Affect Autism: We chose play, joy every day: Recent Episodes
Affect Autism: We chose play, joy every day
David Raphael is a social worker and was the co-founder of the former Floortime Foundation, a national organization advancing relationship-based interventions. He is here to discuss his first book, A Miracle of the Heart: A Father and Son’s Autism Journey, co-written with his son Jacob and published on July 1 of this year. He has published essays on his family’s experience of autism in the peer-reviewed Zero to Three journal, and has delivered keynote presentations at national gatherings of autism professionals, educators, and parents, and has met with multiple parent groups on autism advocacy, DIRFloortime®, and finding meaning through caregiving.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2026/08/07/miracle-of-the-heart/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
DIR-Expert Jackie Bartell returns this episode to discuss how to provide expectations for children with developmental differences in order to foster independence and developmental progress using a Developmental, Individual differences, Relationship-based (DIR®) approach. I present a few challenges we are currently facing at home and Jackie coaches me on how to implement some straight-forward practices to provide some relief for our family.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2019/08/19/fostering-independence/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
AUTISTIC Viewpoints is a podcast hosted by Turrell Burgess and Daria Brown. On Episode 13, Turrell and Daria welcome extraordinary autistic guitarist Zayne Harshaw, leader of the band, Blue Spectrum, to discuss his autism journey, teaching himself guitar, discovering his musical gifts, and how music transformed his life from feeling like an outsider to finding confidence, community, and purpose. Along the way, they explore favorite guitarists, perfect pitch, improvisation, and the power of following one's passion.
Learn more at https://affectautism.com/autistic-viewpoints/
Timestamps:
0:05 Introduction
0:32 Welcoming special guest Zayne Harshaw
1:01 Meeting Zayne at the ICDL DIR® Conference
2:30 Zayne's musical background and accomplishments
4:17 Turrell's admiration for Zayne's guitar playing
4:42 Growing up autistic and discovering differences
6:06 From trumpet to teaching himself guitar
7:03 Guitar Hero and learning to play by ear
8:38 Feeling like an outcast in school
9:15 Using his guitar as a comfort object
9:41 The high school talent show that changed everything
10:53 Forming Blue Spectrum and writing "Outcast Blues"
13:13 Why the band is called Blue Spectrum
14:13 Favorite bands and Nirvana discussion
14:58 Guitar heroes and musical influences
16:42 Promo for Turrell's podcast "Under the Lights" on the Autistic Culture Podcast Network
17:28 Learning guitar
19:02 Realizing music could become a career
21:28 Discovering perfect pitch
24:35 Favorite songs and artists to play
25:40 Canadian fun fact
25:48 What Zayne loves and still finds challenging about being autistic
26:56 DIRFloortime® connection: music, improvisation, and development
28:42 ICDL music and Floortime courses announcement
30:18 Feeding off the audience's energy during live performances
31:08 Learning by watching great guitarists perform
32:17 Blues musicians, concerts, and dream collaborations
33:37 Performing for large audiences
35:18 The latest "hot ticket" Canadian Quebecois duo Angine de Poitrine
36:43 Finding belonging through music and community
38:22 Turrell reflects on autistic gifts and inspiring others
39:17 Where to hear Blue Spectrum and closing remarks
Resources:
- Blue Spectrum Band website https://bluespectrumband.com/
- Blue Spectrum Band Facebook page https://www.facebook.com/BlueSpectrumband/
-
Blue Spectrum Band Instagram https://www.instagram.com/bluespectrumband/
-
Yngwie Malmsteen https://en.wikipedia.org/wiki/Yngwie_Malmsteen
- Under the Lights on the Autistic Culture Podcast Network hosted by Turrell Burgess https://shows.acast.com/under-the-lights-podcast
- Bohemian Rhapsody by Queen https://youtu.be/fJ9rUzIMcZQ?si=LjJ8qhEfFEbHCmWu
- Wayne's World movie https://en.wikipedia.org/wiki/Wayne%27s_World_(film)
- Course for practitioners: DIR 433 - Using Music in Floortime: Promoting Development through Music https://www.icdl.com/courses/433
- The Rebecca Center for Music Therapy https://www.therebeccacenter.org/
- Course for parents: DIR 110 - Using Music in Floortime: Promoting Development through Music https://www.icdl.com/courses/dir-110-using-music-in-floortime-for-parents
- ICDL's Courses: https://www.icdl.com/courses
- The Meters - Cissy Strut https://www.youtube.com/watch?v=MXI5Nuz6OHg
- Zayne's favorites: Stevie Ray Vaughan, Eric Clapton, Carlos Santana, Jimi Hendrix, Joe Bonamassa, and Kenny Wayne Shepherd
- Zayne has met Eric Gales, Christone "Kingfish" Ingram
- The movie Sinners https://en.wikipedia.org/wiki/Sinners_(2025_film)
- Quebecois Canadian band Angine de Poitrine https://anginedepoitrine.com/
-
Primus (band) https://en.wikipedia.org/wiki/Primus_(band)
-
Angine de Poitrine photo credit: https://www.cbc.ca/music/angine-de-poitrine-quebec-band-kexp-9.7120120
-
Thank you to Hungarian recording artist Post Analog Disorder for the intro/outro music permission: https://postanalogdisorder.bandcamp.com/album/still-i-rise
This episode features three psychologists from Rebecca School in New York City who discuss how psychological assessments can better reflect the true abilities of neurodivergent children when viewed through a DIRFloortime® lens. They explain that traditional testing often measures a child’s ability to tolerate unfamiliar environments, demands, and sensory challenges rather than accurately capturing their cognitive strengths. Our discussion challenges long-standing assessment practices and offers a more respectful, relationship-based alternative.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2026/07/24/assessments/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Occupational therapist and Developmental, Individual differences, Relationship-based (DIR®) Floortime Trainer Keith Landherr of Little Buddies Pediatric Therapy in the Vancouver suburbs joins us this episode to discuss what sensory integration is and why emotional attunement and respecting the child's sensory experience is essential to it with helpful tips for parents.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2021/02/27/sensory-integration/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support
This episode we're discussing supporting regulation through the body first versus leaning on cognitive strategies to support children with pediatric occupational therapist and Advanced DIRFloortime® provider Stephanie Gagnon.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2026/07/10/body
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
The topic of this episode is trauma through a DIR® lens. Maude Le Roux recently did a course on this topic through the International Council on Development and Learning (ICDL) and here she covers how to work with trauma clients through the Functional Emotional Developmental Capacities (FEDCs). This complements the previous trauma-related podcast episodes I’ve done with Galina Itskovich, and Erin Forward and Taylor Anderson, and focuses on the DIRFloortime® aspect of the work.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here:
https://affectautism.com/2024/08/16/trauma-dir-lens
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Kieran and Michelle Rose return to the podcast to discuss their new community at The Autistic Advocate and Kieran's latest book, Autism – A Collection of Essays. They reflect on nearly a decade of advocacy, how the autism landscape has evolved, and why meaningful change depends on compassion, connection, and a willingness to keep learning.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2026/06/26/essays/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Licensed Clinical Psychologist, Alex Klein, joins us this episode from Oakland, California where he is both in private practice and works at the Kaiser Oakland Medical Center assessing and providing therapy to both children and adults with neurodevelopmental differences. He trained with Dr. Stanley Greenspan, Jake Greenspan and Tim Bleecker, and also with Dr. Gil Tippy and Tina McCourt at the Rebecca School, where he was a Head Teacher and Floortime Coach before moving out west for graduate school. I invited him to share his presentation from the Rebecca School DIR® NYC Conference on Neurodiversity-Affirming Care.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: http://affectautism.com/2021/04/10/neurodiversity
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
AUTISTIC Viewpoints is a podcast hosted by Turrell Burgess and Daria Brown. On Episode 12, "Don't Stop 'Til You Get Enough," Turrell and Daria cover Michael Jackson: the new movie, the songs, the fandom, his intersection with DIRFloortime (what?!) and a few more surprises! Enjoy our special episode on the occasions of AUTISTIC Pride (June 18) and JUNETEENTH (June 19)! We hope you like it as much as we enjoyed making it!
Learn more at https://affectautism.com/autistic-viewpoints/
Timestamps:
0:14 Introduction
1:56 Turrell's first memories of hearing Michael Jackson
2:27 Daria's first memories of hearing Michael Jackson
3:07 The Jackson 5
3:45 Why the beginning of the movie Michael made Daria so emotional for more than one reason
5:50 Turrell's reflections on the movie Michael
7:05 Turrell's early experiences listening to Michael Jackson growing up
7:29 Daria's real-time experiences of listening to Michael Jackson growing up
8:28 The album OFF THE WALL: our impressions and memories
9:45 The album THRILLER: our impressions, including from the movie, Michael, and our memories
11:57 Thriller in the movie, Michael
12:17 Turrell's favourite songs from Thriller
12:40 Daria's favourite songs from Thriller
13:18 MOTOWN 25 and the movie
14:13 The album BAD: our impressions and memories
15:04 * AUTISTIC Pride tribute *
15:38 Turrell's Fun Fact and Daria's reflections on Bad's impact
16:23 The album DANGEROUS: our impressions and memories
18:10 Daria's concert book from the Victory Tour
21:55 Concert talk
22:50 History and Invincible and the Michael Jackson Experience video game
23:46 Memories of Michael Jackson's death
24:32 The movie's foreshadowing
25:23 What the fans wanted
27:43 Jaafar!
28:16 The movie's success
28:28 Michael Jackson Cancun show
29:52 * JUNETEENTH tribute *
31:07 Canadian connection!
31:46 DIRFloortime connection!
33:25 ICDL connection!
34:50 * Turrell's SPECIAL ANNOUNCEMENT! *
36:27 Closing remarks
Resources:Wylie Draper: https://www.instagram.com/p/DSgOQKskT5x/ and https://www.instagram.com/p/DW7tFjija-o/
- Thank you to Hungarian recording artist Post Analog Disorder for the intro/outro music permission: https://postanalogdisorder.bandcamp.com/album/still-i-rise
My guests this episode are Gwen and Gene Harshaw. At 4 years old their son Zayne was diagnosed with autism and his parents were told that he would never be able to read, button his shirt, zip zippers or tie his shoes, or connect with other people. His parents found strength through Zayne’s gifts instead of focusing on his weaknesses. Today, Zayne is a member of the band Blue Spectrum, which is the ICDL’s house band. The Harshaw family are autism acceptance advocates through their public speaking engagements and volunteer roles where they offer guidance, provide hope, and build families’ confidence and capacity, and a “vision of possibility.”
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2026/06/12/possibility/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Thank you to Toronto recording artist Ayria for the intro/outro song permission.*
AUTISTIC Viewpoints is a new podcast hosted by Turrell Burgess and Daria Brown. This episode, they discuss the Autistic Culture Podcast's 10 Pillars of Autistic Culture!Learn more at https://affectautism.com/autistic-viewpoints/Timestamps:00:32 10 Pillars of Autism03:27 Pillar 1: Bottom-Up Processing 11:34 Reference to Dr. Stephen Shore mentioning "extremes" (in this podcast episode: https://affectautism.com/2025/08/01/pda/)15:49 Pillar 2: Rhythmic Communicating22:55 Pillar 3: Norm Challenging28:43 Pillar 4: World Building36:52 Pillar 5: Pattern Matching39:19 Pillar 6: Game Changing Innovation40:07 Pillar 7: Boldly Creating42:36 Variations in support needs but still Autistic44:33 Pillar 8: Predictably Comforting48:10 Pillar 9: Justice Seeking 51:29 Pillar 10: Passionate Superfanning 56:41 Wrap-Up57:54 Kasheena MomentLinks/Resources (not endorsements; no commission was received for any of these links):
- Turrell Burgess on Instagram: https://www.instagram.com/tmauronthespectrum/
- Daria Brown on Instagram: https://www.instagram.com/affectautism/
- The 10 pillars of Autistic culture: https://www.autisticculturepodcast.com/p/autistic-podcast-pillars-of-autistic-culture
- Bill Gates is Autistic: https://www.axios.com/2025/02/03/bill-gates-interview-autism-spectrum
- Mexican Onyx Figurines https://www.therockwarehouse.com/assets/MEX_1142_800.jpg
- The AV Logo behind Daria's head looks like Princess Leia's hair from Star Wars https://www.theorysabers.com/article/princess-leia-quotes
- Darth Vader from Star Wars: https://wallpapers.com/darth-vader-pictures
- 1980s Strawberry Shortcake Toys: https://www.instagram.com/p/C8GJtpqvmJq/
- Michael Jackson album Thriller: https://en.wikipedia.org/wiki/Thriller_(album)
- Thriller music video: https://geekmamas.com/2021/08/30/thrilling-the-world-with-the-thriller-dance/
- Michael Jackson's Beat It video: https://www.billboard.com/music/pop/michael-jackson-beat-it-youtube-billion-views-club-1235515822/
- The Electrifying Mojo Detroit 1980s Radio DJ: https://en.wikipedia.org/wiki/The_Electrifying_Mojo
- The Moon Walk https://abcnews.go.com/Entertainment/michael-jackson-learned-moonwalk/story?id=55336603
- Nirvana rock band https://en.wikipedia.org/wiki/Nirvana_(band)
- Marvel Universe https://en.wikipedia.org/wiki/Marvel_Universe
- DC Comics https://en.wikipedia.org/wiki/DC_Comics
- Comic-Con https://en.wikipedia.org/wiki/Comic_book_convention
- Kobe Bryant https://en.wikipedia.org/wiki/Kobe_Bryant
- Kobe Bryant Tragic Death https://abcnews.go.com/US/dead-helicopter-crash-southern-california/story?id=68545466
- 1984 Jackson Victory tour https://en.wikipedia.org/wiki/Victory_Tour_(The_Jacksons)
- The Pontiac Silverdome, former home of the Detroit Lions NFL and Detroit Pistons NBA teams https://en.wikipedia.org/wiki/Pontiac_Silverdome
- Lollapalooza Music Festival https://en.wikipedia.org/wiki/List_of_Lollapalooza_lineups_by_year
-
DIRFloortime https://www.icdl.com/dir/floortime
-
Thank you to Hungarian recording artist Post Analog Disorder for the intro/outro music permission
This episode features a new empowering podcast called The Affirming Village which focuses on creating more neuroaffirming spaces for neurodivergent and disabled learners--a topic that comes up regularly at ICDL's parent support meetings. Dr. Destiny Huff, LPC and Educator Lisa Baskin Wright talk about their personal experiences as neurodivergent mothers advocating for their children in ableist school settings, about their professional work in this area, the biases families face, and their new podcast that provides a neuroaffirming space to discuss these issues.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/10/03/the-affirming-village/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
AUTISTIC Viewpoints is a new podcast hosted by Turrell Burgess and Daria Brown. Two autistics, very different, yet aligned on many values. Join their conversation by tuning in to hear their viewpoints on topics from DIR® to professional sports, food, and pop culture to neurodivergent relationships and more!
Learn more at https://affectautism.com/autistic-viewpoints/
Timestamps:
00:00 Welcome and hello
00:37 Introduction to our guest, Khylil Robinson
01:35 First topic: Dealing with awkward situations
02:48 Turrell's dating mixer and football game
07:35 Meet-up experiences and Khylil's audio hyposensitivity
15:58 Driving and loud music
20:05 Board games, arcade games, bowling alleys, night clubs and socializing
29:25 10 Pillars of Autistic culture from the Autistic Culture Podcast
29:52 Food!
39:07 Ausome Ambassadors
48:38 Canada Fun Facts!
Links/Resources (not endorsements; no commission was received for any of these links):
- Turrell Burgess on Instagram: https://www.instagram.com/tmauronthespectrum/
- Daria Brown on Instagram: https://www.instagram.com/affectautism/
- Khylil's organization: https://www.spectrumsuccess911.org/
- Khylil on the WE CHOSE PLAY podcast:
- Part 1: Taking that Step on the Red Carpet: https://affectautism.com/2022/11/05/step/
- Part 2: Bridging the Gap in Understanding: https://affectautism.com/2022/11/12/bridge/
- Hiki neurodivergent dating app: https://www.hikiapp.com/
- Battleship game: https://en.wikipedia.org/wiki/Battleship_(game)
- Jenga: https://en.wikipedia.org/wiki/Jenga
- Neurodivergent therapist Zoe Darazsdi: https://www.zoedarazsdi.com/
- Sad and Boujie Party - Philadelphia: https://www.instagram.com/sadandboujeeparty/
- Migo's song Bad and Boujie: https://youtu.be/S-sJp1FfG7Q?si=YwTHzohWqYhyTUhs
- Boat where "Sad and Boujie" event was held: https://www.moshulu.com/
- Khylil's Driving Blog: https://asdnext.org/blog/drivers-story/
- Loops Ear Plugs: https://www.loopearplugs.com/
- King of Hearts game: https://store.steampowered.com/app/2566650/King_of_Hearts/
- Dance, water, dance!: https://www.youtube.com/watch?v=rdPjTocVPhQ
- Sexy Nerds events: https://sexynerds.net/
- Tattooed Mom Philadelphia bar: https://www.tattooedmomphilly.com/
- The Curious Incident of the Dog in the Night-Time story: https://en.wikipedia.org/wiki/The_Curious_Incident_of_the_Dog_in_the_Night-Time
- Wind-up flipping frogs: https://playfulmindstoys.ca/products/wind-up-flipping-frogs?variant=42483235619072
- Dum Dum Pops: https://www.dumdumpops.com/
- 10 pillars of Autistic culture: https://www.autisticculturepodcast.com/p/autistic-podcast-pillars-of-autistic-culture
- Buddakan restaurant in Philadelphia: https://buddakan.com/
- Ausome Ambassadors in Philadelphia: https://www.spectrumsuccess911.org/charity-organization-programs/ausome-ambassadors
- Next Ausome Ambassadors offering through Drexel University Autism Institute: https://www.facebook.com/AJDrexelAutismInstitute/posts/the-community-wellness-hub-and-spectrum-success-911-are-hosting-ausome-ambassado/1208335408000369/
- Niagara Falls, Ontario, Canada: https://globalnews.ca/news/8450380/mayor-niagara-falls-something-for-everyone/
-
Turrell's book: https://affectautism.com/2022/06/04/turrell-burgess/
-
Thank you to Hungarian recording artist Post Analog Disorder for the intro/outro music permission
This episode features Kelly Bron Johnson in Montreal and Anne Borden King in Toronto. Kelly is a non-binary, Autistic, and Hard of Hearing (HoH) self-advocate and founder of Completely Inclusive, a social enterprise consultancy devoted to inclusion and accessibility in the workplace. Anne is the co-founder of Autistics for Autistics, Canada's autistic self-advocacy organization, and the host of Noncompliant: A Neurodiversity Podcast. Both guests are mothers of autistic teenage sons and authors. We are chatting about their journey and Canadian disability advocacy.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/09/26/action/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
This episode I'm airing a year-old presentation made by the late, great DIRFloortime® Expert Training Leader and phenomenal educator, Kasheena Holder. I hope you will enjoy the tips she provided our DIR® Parent Network with regarding bridging the gap between home and school.
For those who knew Kasheena, this will be a wonderful reminder of her warmth, wisdom, and dedication to families. And for those hearing her for the first time, it’s a chance to be inspired by the passion and insight she so generously shared.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/09/26/school/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Thank you, Floortimers, for the years of learning! This episode, number 290, the first episode of Season 11, features Sophia Ashman, a DIR practitioner in Los Angeles, California who currently works in preschools and provides in-home therapy. She has been a Floortimer for 25 years and was one of my son's first therapists at his school which is how we met, but we quickly became friends and I miss her tremendously and want her to move back to Canada! The philosophy that she strongly believes in is that the children she works with need to be seen, be heard, and feel understood.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/09/19/essential-floortime/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Carolina Sosa Carrero es educadora en música, movimiento y lenguaje, con una maestría en intervención temprana y desarrollo infantil. ¡Es la primera Líder de Capacitación Experta en DIRFloortime® en Ecuador! Gaby Cabezas tiene un título en Comunicación y Literatura, además de una maestría en Lengua Inglesa. Actualmente trabaja como profesora de inglés y escribe ciencia ficción. Caro y Gaby son ambas neurodivergentes y muy entusiastas del DIRFloortime®. ¡Su objetivo es difundir DIR® al mundo hispanohablante a través del trabajo de Caro y de su nuevo pódcast, Ecos Neurodivergentes!
Enlace a la publicación completa del blog, con vínculos a los puntos clave de la conversación y otras maneras de ver o escuchar el pódcast aquí: https://affectautism.com/2025/09/12/ecuador-es/
Cuidadores: Consideren unirse a nuestra Red de Padres DIR® para recibir apoyo de una comunidad de Floortimers con intereses afines aquí: https://www.icdl.com/parents
Carolina Sosa Carrero is an educator in music, movement, and language with a Master’s degree in early intervention and child development. She is the first DIRFloortime® Expert Training Leader in Ecuador! Gaby Cabezas has a Communications and Literature degree with a Master’s in English Language. She is currently working as an English teacher and writes science fiction. Caro and Gaby are both neurodivergent and very enthusiastic about DIRFloortime®! Their goal is to spread DIR® to the Spanish-speaking world through Caro’s work and their new podcast, Ecos Neurodivergentes!
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/09/12/ecuador/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
AUTISTIC Viewpoints is a new podcast hosted by Turrell Burgess and Daria Brown. Two autistics, very different, yet aligned on many values. Join their conversation by tuning in to hear their viewpoints on topics from DIR® to professional sports, food, and pop culture to neurodivergent relationships and more!
Learn more at https://affectautism.com/autistic-viewpoints/
Timestamps:
00:17 Introductions
02:58 Explosion of Neurodiversity
03:48 Our Podcast Content
09:30 Our Health Issues
11:39 Canada Fun Facts
14:08 Sports
16:22 DIRFloortime®
26:12 Reflections
31:40 Podcast Dedication
37:38 Wrap-Up
Links/Resources:
Neurotribes by Steven Silberman
Turrell's past podcast with Daria
Khylil Robinson podcast episodes: Part 1 and Part 2
Kasheena's podcasts: Here and Here
- Thank you to Hungarian recording artist Post Analog Disorder for the intro/outro music permission
Here is the trailer for our upcoming podcast, AUTISTIC Viewpoints, hosted by Turrell Burgess and Daria Brown. Two autistics, very different, yet aligned on many values. Join their conversation by tuning in to hear their viewpoints on topics from DIR® to professional sports, food, and pop culture to neurodivergent relationships and more!
Learn more here: https://affectautism.com/autistic-viewpoints/
#AutismAcceptance #AutismCommunity #AutismSpectrum #AutismEducation #AutismFamilies #AutismKids #AutismMoms #AutismParents #Neurodivergent #NeurodiversityAcceptance #DisabilityAwareness #DisabilityAdvocate #DisabilityInclusion #DevelopmentalDisabilities #DisabilityServices #actuallyautistic #WeChosePlay
Dr. Angel Belle Dy is a DIRFloortime® Expert Training Leader in the Phillippines who started The Growing Brain PH, a DIR® accredited clinic that began as a social media page. She is a medical doctor who has a background in public health, community-based programs, and program development and fell into the world of infant mental health and parent coaching through finding Floortime. She teaches both online and on site courses for the International Council on Development and Learning.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/08/29/medical/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
This marks the first edition of Autistic Moms Chatting from Affect Autism. This episode features two autistic mothers and autistic advocates living in the United Kingdom. Autistic Moms Chatting is an addition to the usual podcast episodes.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/08/26/creating-community/
This marks the fifth edition of DIR® Dialogues from Affect Autism. This episode features Practitioner Panels–this one featuring five Speech-Language Pathologist DIRFloortime® Expert Training Leaders exploring Gestalt Language Processing. DIR® Dialogues is an addition to the usual podcast episodes.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/08/15/dialogues-5/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Thank you to Danish recording artists Тhe Foreign Resortfor the intro/outro song permission.
Returning guest, Clinical Psychologist Dr. Robert Naseef, and first-time guest, Autistic Self-Advocate and Professor of Special Education at Alephi University, Dr. Stephen Shore have recently published an article in Autism Spectrum News called Reframing Pathological Demand Avoidance: A Neurodiversity-Affirming Perspective which we discuss.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/08/01/pda/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Maythe Martinez es una Líder Experta en DIRFloortime® en Mérida, México, donde fundó una escuela acreditada en DIRFloortime® llamada Senderos. Maythe es licenciada en psicología, tiene una maestría en Desarrollo Infantil y también es especialista en salud mental de la primera infancia. Senderos es una escuela bilingüe (español-inglés) de nivel preescolar y primaria que actualmente está organizando sus actividades para el campamento de verano y aceptando inscripciones para el próximo ciclo escolar.
Enlace a la publicación completa del blog, con vínculos a los puntos clave de la conversación y otras maneras de ver o escuchar el pódcast aquí: https://affectautism.com/2025/07/18/senderos-es/
Cuidadores: Consideren unirse a nuestra Red de Padres DIR® para recibir apoyo de una comunidad de Floortimers con intereses similares aquí: https://www.icdl.com/parents
Maythe Martinez is a DIRFloortime Expert Training Leader in Merida, Mexico where she opened a DIR-accredited DIRFloortime school called "Senderos" which means "path" in English. Maythe is a licensed psychologist and an early infant/early childhood mental health specialist as well. Senderos is a (Spanish-English) bilingual preschool and elementary school currently planning their summer camp activities and accepting students for the upcoming school year.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/07/18/senderos/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
This marks the fourth edition of DIR® Dialogues from Affect Autism! This episode features practitioner panels–this one featuring five DIRFloortime® Expert Training Leaders exploring considerations around setting limits and boundaries with our children in Floortime. DIR® Dialogues is an addition to the usual podcast episodes.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/07/04/dialogues-4/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Thank you to Ukrainian recording artist ШТАДТ (STADT)for the intro/outro song permission.
This edition of Parent Perspectives features a full-time mother, passionate advocate, and deep thinker, navigating life through the lens of a late ADHD diagnosis with her neurodivergent family. We discuss her family’s experience at their Floortime intensive at ICDL’s DIR® Institute.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/06/20/parent-insights/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Thank you to Toronto recording artist Ayria for the intro/outro song permission.
This marks the third edition of DIR® Dialogues from Affect Autism! This episode features practitioner panels–this one featuring five international DIRFloortime® Expert Training Leaders discussing moving from being someone “doing Floortime” to becoming a “Floortime therapist.” DIR® Dialogues is an addition to the usual podcast episodes.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/06/06/dialogues-3/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Thank you to Ukrainian recording artist ШТАДТ (STADT)for the intro/outro song permission.
This episode's guest is Tammy Bishop in Florida who has been an occupational therapist since 1999. She operates a service called Bicycle Lessons 4 All where she teaches autistic kids and individuals of all abilities to ride a bicycle. We met in a Praxis course at the STAR Institute and I like the idea of including a Floortime-adjacent topic on the podcast from time-to-time.
Link to the show notes with links to key discussion points and other ways to view or hear the episode here: https://affectautism.com/2025/05/23/bicycle/
Consider joining our DIR® Parent Network or becoming an Affect Autism member for bonus content and support from a like-minded community of Floortimers here: https://affectautism.com/support/
Photo by Ketut Subiyanto**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
Brookes Barrack is a Speech-Language Pathologist and DIR-Expert Training Leader who has a clinic just outside of Kansas City, Kansas with Occupational Therapist Emily Tritz called Kansas City Developmental Therapies where they offer DIR services. This summer they became an official accredited DIR Organization. She originally trained in Floortime at “the Bunker” with Drs. Greenspan and Wieder in Washington, D.C. and in the PLAY Project with Dr. Rick Solomonback at his home. This episode we are discussing Gestural development : The D, The I, and The R.
Gestural Development: The ‘D’, the ‘I’, and the ‘R’by Affect Autism
https://affectautism.com/wp-content/uploads/2025/09/2024-09-27.mp3Bonus Insights
DIR Parent Network click HERE
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Setting the Stage
I set the stage for this episode by referring to the podcast I did with Gene Christian on Preverbal Affective Signalling and how important it was to Dr. Stanley Greenspan in his teachings of DIRFloortime. Brookes says that gestural communication is something she barely touched on in graduate school. Until she had the gift of Floortime training, especially with her mentor Sherry Cawn, doing video reflections she truly didn’t understand the importance of gestures.
Brookes’ mentor would always say, “Tell me about his gestures” and she would wonder why it was so important because for years, as a working speech-language pathologist, she would check off the boxes on a standardized assessment or during a language assessment and talk to families and hear that kids weren’t waving or pointing, but didn’t do anything with that information. It didn’t lead her to further wonderings until Brookes started diving deep into DIRFloortime.
Brookes slowly realized that she was missing so much by excluding gestural communication and even now in her practice, she has a lot of field work graduate students who also say they haven’t learned much about gestural development. A lot of caregivers tell her this, too. They notice that their neurodivergent or autistic child wasn’t gesturing in the same way as siblings, for instance. Brookes says that looking at gestural development can help us support language because there’s a lot that gestures do for communication, and also to support working memory and long-term memory.
What are Gestures and How do they Develop?
Brookes explains that a gesture is just a movement of the body or limbs that expresses or exercises a feeling or idea. It’s an image in material form and she wants us to remember that definition for later. In predictive development, Brookes explains, it’s at between around 7 to 9 months when we see babies starting to gesture. Gesturing is easier for the body than the more coordinated motor plan of speech. If they’re representational gestures, we tend to see speech coming about 3 months later for that gesture.
These gestures also bring in the ‘R’ (Relationship), too, because gestures develop with a caregiver. When a baby wants to be picked up, they reach both arms up and have a lovely back-and-forth with an attuned caregiver who picks up the baby. So the baby starts to learn that they have agency in this world. And so the more we as caregivers are responding to this development of gestures, the more we get the gestures back, Brookes explains. This is in the third Functional Emotional Developmental Capacity (FEDC) in the Developmental, Individual differences, Relationship-based (DIR) model. We always talk about how important this preverbal communication is before speech and language develop, and, of course, some children do not develop speech and language, but communicate in so many different ways.
Individual differences impacting Gestural Development
I shared that when I was getting questionnaires about my autistic son who’s now 15 and they asked if he points to things and look at you to show you what he’s looking at, I said that he did not, and then it must have been 4 or so years later when he started pointing at things. So a lot of times with this developmental model we see development unfold in these ways, but it might take longer in some kids and in my son, it’s been a lot longer of a process. But it still follows this developmental trajectory, even though it might look different. Brookes responded that we want to look at how a person’s ‘I’ (Individual differences) impact the developmental capacities.
Brookes went back to the example of the baby lifting up their arms for their caregiver to pick them up. Some kids, though, might not have the postural control, or the ability to sit up. Some may need both hands on the ground to be able to sit up, but you can’t have both hands on the ground and also bring them up. That doesn’t mean the child didn’t have the idea to reach for the parent, though, but at that time, this individual differences impacted the baby’s ability to do it.
This was a significant shift for Brookes in her thinking as an SLP, she shares. So if you answer on a questionnaire that your child is not pointing, then what do we do with that information? We want to wonder deeper about individual differences, Brookes states. It’s not that a child doesn’t want to communicate, Brookes says. It’s not that they don’t want to be part of a shared world with the rapid back-and-forth interactions. Something might be making that harder for them, so we want to know how to support it as caregivers.
Relationship impacting Gestural Development
That’s where the ‘R’ comes in. When practitioners see some of these differences early on, then what can we do to support parents? Maybe we can see that they moved their eyes, but can’t yet move their whole hand. First, a baby moves their whole hand to point to something and then eventually you get that lovely distal point where it’s just the one finger, Brookes explains. If they can’t do that but they’re sharing some eye gaze, we as parents can then model it for them and interpret for them. So the more we can understand what gestures develop when and why, and for what purpose, then, the more we can help support parents and help support our own kind of therapeutic goals, Brookes states.
In his radio shows and writings, Dr. Greenspan talked a lot about how parents can think that their child isn’t interested because they’re not showing the development as expected, and so you kind of get this snowball effect where the parent stops engaging so much with the child, and then a child doesn’t get that interaction. And that can be like a self-fulfilling prophecy where the child doesn’t interact with you. What Brookes is saying is that we can educate parents and explore and be curious together about what the child is doing or not doing and notice those other cues like their eyes going up because they couldn’t move their arms up.
My little guy was a little butterball, just all rolls of chubbiness and cuteness. If I look back at old videos of him now maybe I see some signs of having a harder time doing certain things. The Occupational Therapists (OTs) always said he had a weak core because he was W-sitting instead of being able to have that strength to sit up. It’s different than strength because I could hold his feet and he could do a wheelbarrow walk, yet he slouches all the time. There are so many individual differences, Brookes says, that can impact gestural development. We want communication to be easy. Brookes is not looking for perfection.
My goal as a Speech-Language Pathologist is that every kid or team that I see feels like communication is easy and that they’re understood. Those are the primary things we should be working on.
Brookes Barrack, DIR SLPBrookes is looking for meaning, and thinking about how to support children in their bodies and their ideation, and everything else. Motor planning and praxis affects our ability to gesture along with postural control and visual-spatial skills because if we’re not watching others, it’s hard for us to take in that information because we can’t track. Think about parent attachment as well. If you have an insecure or avoidant kind of attachment, that child might be gesturing, but the parent might not respond, so the child stops gesturing. There are so many pieces that impact gestural development, and we can help parents understand what it is that the child is doing in a communicative way.
Holding Gestures Longer
Brookes says that if a child isn’t gesturing, we can hold our gestures longer. When playing with the child and you don’t know, you can hold your hands up and shrug for a long time. Another piece about gestures that goes so well with Floortime is that you have to use affect. You can’t really gesture without using any kind of affect. It all goes together. Brookes says that sometimes people get confused with sign language and gestures and they’re very different, because sign and speech are stored and used in the same part of our brain, whereas gestures are in a different part.
Gestures allow us to fire up more of our brain, Brookes says. She took years of sign language as a student and worked in a deaf hard of hearing classroom. There was a teacher of the deaf who was deaf and one of the best paraprofessionals was a child of deaf adults. They were part of the deaf culture, and signers as their first language and Brookes could sign proficiently with them. When they told a story or read a book, they use more of a gestural type of communication and due to that affect, Brookes didn’t even need to know all the signs because the gestures helped her understand.
It’s not just the child gesturing for communicative intent, Brooke says. When we gesture, it helps the child process language better and process communication better, so we’re supporting their understanding, not just their expression, Brookes declares.
Related PodcastsThe Importance of Preverbal Affective Signalling with Gene Christian
Pre-linguistics are Pre-Social Abilities with SLP Mary Beth Stark
The Building Blocks of Motor Planning with OT Maude Le Roux
All About Praxis Part 1 and Part 2 with OT Joann Fleckenstein and LPC Mike Fields
Physical Therapy Part 1 and Part 2 with PT Mary Beth Crawford
And Interdisciplinary Approach
Brookes is so aware of so many factors as an SLP which speaks to the fact that this is an interdisciplinary approach that really helps parents. As a parent, I commented that not many parents have an education on child development. I have one child and I’ve only ever had one child, so I watched my child develop, and didn’t know if it was different than other kids or not. I could see that my child was fussier than the other kids in my mother’s group. I knew he needed to move and later learned that his vestibular system really needs that input and his proprioceptive system needs input, so it’s so helpful to have this knowledge through a DIR approach.
DIR practitioners look at the why behind the behavior presume competence, so wonder what’s preventing them from doing something like communicating through gestures. Brookes says that often the Speech-Language Pathologist (SLP) is the first therapist who is contacted because parents want their children to speak. Often she will look at what needs to be done first developmentally, and sometimes her clinic takes a lot of Medicaid and insurance families, so they have to justify their therapy to those insurance companies. If families have to choose between therapies, sometimes Brooke will advise that they choose Occupational Therapy or Physical Therapy first.
The other therapist may need to look at what is happening with the motor planning system and the whole body picture. Thinking about what we do to help support parents, Brookes continues, oftentimes depends obviously on individual differences, but as a whole, she wants to look at the deeper why about why she thinks they’re not gesturing.
Supporting Parents
Brookes will educate the family on typical gesturing and have them do bigger, whole body gestures. She’ll get them to do many different kinds of gestures to begin with that grab attention, called deictic gestures. These are simple gestures such as when you look at the light, point to the light, and then label the light, or when you go outside and the dog walks by and we point to the dog and label it. The toddler may then start to point and say “dog” and eventually two-word phrases.
Those kinds of gestures start first, Brookes explains, and then we go into more representational or symbolic gestures like putting your finger up to your lips and saying, “Shh” or when you change the baby’s diaper you wave your hand in front of your nose and say, “Whoo, it’s stinky!” Those are more symbolic, so we want them understanding how gestures develop what they look like as they develop. Next, Brookes continues, we want them understanding their child better to know what is happening.
Brookes will also introduce a beat gesture where you’re talking and emphasizing language with your hands. The research on beat gestures says that when children use them, they show better narrative skills later. Watching the child gives Brookes information about where to support the parents whether it’s using more gestures or modelling gestures for them, or holding that gesture for longer. Parents tell her it’s working when they try, but they feel silly going around the room and/or outside pointing and holding a gesture using that affect while waiting.
Brookes reminds us of the definition she shared earlier about a gesture being an image in material form, because once you speak, it’s gone and you have to mentally picture it. A gesture, on the other hand, can stay, so that’s one way we can support this is by telling families to use gestures more. Also, she helps them interpret what the child is doing with their body to communicate in order to interpret their gestures and make them meaningful to the parent.
Gesturing Supports Academics
What Brookes finds so interesting about gestures is that they support us across a lifetime and we know this because they also there’s been lots of research that shows gestures can help support working memory and also can support long-term memory. We even know that if teachers are using more gestures when they’re teaching, it can support reading comprehensions and even mathematic learning. This is so interesting because by holding the gestures and making the communication more meaningful with the affect, it helps the child make the connection and remember it better.
I’m willing to bet that a lot of kids like the teachers who use a lot of gesturing and affect, especially when they’re younger. Brookes shares that there is research using fMRI that demonstrated a change in the brain after implementing the Visualizing Verbalizing curriculum. Parts of their brains were talking to each other that weren’t before. It’s a reading comprehension approach to help support concept imagery, Brookes explains. When reading, you should be making a movie in your head.
It goes back to meaning making and how we have to have this imagery in our head, and then we get to play around with that imagery. It’s what locks us in and we can be in a different place, yet still remember. One way you can tell if a child is using concept imagery is that they start gesturing, Brookes shares. The research shows we are using a different part of our brain when we’re visualizing information and using a visual motor representation, which is a different part of our brain than speech. We need to activate working memory. A gesture allows us to hold on to the image and that’s what long term memory is, she says.
If we can use more gestures as parents or ask our kids to, we can see it having a role affect working and long term memory. In fact, there’s research from SLP Sarah Ward in Boston who is an expert in executive functioning. You can tell a child to go upstairs and to put their pajamas on. If you instead ask them to ‘show and tell’ you their plan, they have to gesture it. They need to repeat back that first they are going to take their clothes and throw them in the hamper, then shower, then get their clothes out for the next day, put them on their bed, and get ready for tomorrow. This is different and they’ll probably remember it better because it’s firing up a different part of the brain.
Neurodivergent Parents
I asked Brookes about neurodivergent parents who may not gesture and so their children not only don’t have the same predisposition, but also aren’t getting that gesturing from the parent. Is it ableist of us to tell them they need to gesture more or are we just promoting gesturing to support their communication? We know that the neurodiversity movement is so relatively new and evolving since Neurotribes came out, and there’s so much information now on neurodiversity-affirming care, but there’s not a lot of research on autistic development, per se. We hear self-advocates saying that they develop differently. Is development just development for all humans?
In DIR we tend to believe that it can look very different for different individuals, and even so, that we all go through the same developmental process, although this is still to be determined in the research field. We believe it is neurodiversity-affirming in that we are respectful and do not force anybody to look neurotypical, respecting individual differences and wanting to empower everyone to communicate more readily. Brookes says that her goal is communication as an SLP. She will take any communicative effort she is given and say it’s intentional and meaningful.
If she has a child who is nonspeaking using a device, she won’t make them use her conventional gestures. They may struggle with praxis and use gestures of their own. She believes it is up to her to understand the client’s gestures and the meaning behind them through a strong Relationship. She honours that, and in that way she is being neurodiversity-affirming, she says. And when she talks about using gestures for working and long term memory, she can suggest to just try it. Even for caregivers, Brookes continues, she can suggest using more gesturing and just seeing how it feels.
Executive functioning is big now, Brookes continues, and we want to think about how to support that as well, she says. It’s just another modality and another piece of the gestures. The more we can give supports in visual form to everyone, the more we’re supporting their comprehension, which is support for regulation, she says.
Everyone wants to understand what’s going on in the world, and if we don’t we tend to dysregulate.
Brookes Barrack, DIR SLPDIR and Gestures
Brookes believes that the best part of DIRFloortime is that the evidence is not just rooted in blind studies, but it’s looking at all the other research that support it. When she looks at therapeutic goals and supporting parents, she examines what she is doing to support imagery throughout development, and supporting it through gestures is just one component. If she uses it in the earlier Functional Emotional Developmental Capacities (FEDCs), it will support her clients in their higher capacities. Holding the gesture longer, and using affect to hold that space is a part of that piece of emotion driving development, she says.
I shared that when I think about holding gestures for a longer time, I think of Dr. Gil Tippy putting his hands out to promote the child coming up with the next thing. Let’s all think developmentally about that deeper why, Brookes says. Thinking about that gestural development helps us chase the why and look at those individual differences and keeps us neurodiversity-affirming since all individuals are so unique and bring different things to us, Brookes says. I added that you you can’t teach developmental capacities as skills. I love how this model pulls so much from different disciplines into a theory that guides how we use all the information. And this podcast episode certainly gave me another way to think about it.
This week’s PRACTICE TIP:This week let’s practice gesturing with our children using a lot of appropriate affect.
For example: Let’s try to point to things, gesture getting undressed and dressed, washing our body, and eating by bringing our hands to our mouth like we are putting a spoonful in our mouth. Let’s match our affect to co-regulate appropriately. That is, if our child is too upregulated, let’s exaggerate slow, quiet affect. If our child is not as responsive, let’s get bigger and a bit louder while still being slow and intentional with our gestures.
Thank you to Brookes for covering gestural development with us in such great detail and with such great tips for caregivers! I hope you found it as helpful as I did and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
Photo by Gustavo Fring**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Guest
Kerri Ciskowski is a DIR-Expert Occupational Therapist in central New Jersey who does in-home support through her service Therapy Keeper for families who are typically raising autistic kids. She is a happily married mother of 3 boys age 12, 10 and almost 8. Today we’re talking about in-home DIR/Floortime coaching which supports parents in unpacking ‘behaviours’ and finding connection and joy with their neurodivergent children.
This Week’s Topic
Parents learning about Floortime often say that they understand the theory, but are still unsure about how to handle their children’s ‘behaviours’. There is no ‘prescription’ in Floortime, though, as each child and family are so unique. We discuss how you can figure out what to do in a great follow-up to the recent podcasts on Intentionality, FEDC 4, and FEDC 4 into 5.
DIR/Floortime In-Home Coaching Supports Familiesby Affect Autism
https://affectautism.com/wp-content/uploads/2024/09/2024-09-13.mp3Bonus Insights
DIR Parent Network click HERE
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Setting the Stage
I set up a scenario that a family comes to Kerri’s service and she has to figure out how to support them. Kerri, I presume will be talking about that Floortime mindset where we look for the ‘why’ behind the behaviour, avoiding ‘teaching’ and ‘directing’, and looking at the sensory processing and individual profile of the child. Kerri says that what’s important when she meets a family is that she wants to set the stage before she even visits the home because it’s different than anything else they’ve experienced.
Kerri lets the family know that if the child is super interested in her when she arrives, and she establishes a great connection, she will run with it in the moment. She lets the parents know that they are a part of that process and if they have any questions, to write them all down because they’ll process it afterwards. The DIR model puts the child and family in the center. She’s never going to tell you what you need to do nor ask your child to perform. What she’s after–what families are always after–is the connection and the joy. This sets the stage for what the initial interactions are about, she assures us.
Appreciating Trauma
A lot of families are coming with so much trauma, including a lot of ‘icky’ experiences, Kerri says. She always wants it to look and feel like an environment where everyone is heard and loved. While this is typical for the Floortime community, Kerri continues, so few outside of it have experienced this. So when Kerri talks about the ‘I’, she wonders what that parent individually needs to have the capacity to even see the magic that’s unfolding in front of them.
The experience of trauma is as wide the individual differences can be, Kerri explains. I shared with Kerri how my son had a massive seizure and another 12 hours later, ending up in emergency, connected to so many contraptions that I didn’t know if he was going to die or if we’d be going home the next day. He was there for 3 weeks, then in a rehabilitation hospital for 3 more months. There, I saw children with very complex disabilities and felt guilty for feeling sad about what happened to my son.
It took me about four years to get over that post-traumatic stress without feeling guilty for feeling sad. I eventually realized that my son had many sensory differences from birth, and was born autistic. He is just like me. We have the same personality. Other parents face traumatic experiences with children who are banging their head or melting down a lot, and parents don’t know what to do to support them. Some children run off when in public, and sometimes you may lose your child, as discussed in this past podcast.
Meeting Families Where They’re At
Kerri concurs that when we realize that our child is not like other children we are overwhelmed. I shared that many find themselves in a behavioural setting like I did at the rehabilitation hospital where my 2-year-old was being strapped in a chair being asked to do menial tasks, and I hated it. It drove me to find Floortime.
Kerri says that Floortimers do an amazing job of holding space for this reality with parents. It’s such a big part of the story, she says. She loves working in homes to see the dynamics between the family members. It’s so organic in that way, she says. She prioritizes the individual profile, and often the conflicting profiles among family members, and she uses the word ‘trauma’ very carefully in a sensitive way, being sure not to project it on anyone.
Kerri and her team recently created two documents in Canva for families: Potential Triggers for a Parent of a Neurodivergent Child and Potential Triggers for a Neurodivergent Child which have both been very helpful for families to see because many people process things more visually. At Therapy Keeper, they are always meeting families where they’re at, but I asked what that looks like?
Wondering Together
If she has a mother who comes in with a fair amount of trauma and a child who is being triggered by something, Kerri looks at the ‘R’ (the Relationship) and the ‘I’ (Individual differences) of the Mom and why she’s feeling what she’s feeling, then separately looks at the child’s experience, the child’s individual differences and for patterns that often occur in autism, and then figures out in real time what’s happening.
If a Mom is saying, “Let’s go brush our teeth” and the child is in the middle of an activity, the child didn’t know they had to brush their teeth, they’re a Gestalt Language Processor (GLP), they don’t like brushing their teeth in the first place, or maybe their expressive language is very robust and they want to negotiate why they shouldn’t have to brush their teeth, this demand that the mother is putting on the child will not go well. It might be her childhood experience. She might be flooding the child with questions.
Kerri would say, “Here are the things that I’m wondering…” She says that her responsibility is to the family, wondering with them, about them, about the child, and getting the parents’ wheels turning as to why things might be falling apart. Kerri says that what might seem simple to a Floortime practitioner might be mind blowing to some parents, such as them asking a lot of questions when the child is dysregulated.
Kerri uses a lot of video footage in her practice without it feeling ‘icky’ or without parents feeling put on the spot. She also uses a lot of home cameras where behaviours might happen, such as during meal times, then they can go back and analyze it later. That shift–something that might feel so foreign to a family, yet is a standard tool for Floortimers who see it so clearly–might be something a parent has yet to see. When you make those simple shifts, Kerri emphasizes, it makes such a huge difference.
Without wanting to sound like a saleman, Kerri has literally seen this shift transform families. She tells people as one Mom to another Mom, whether you engage in her services or not, she needs you to know about Floortime!
Setting up for Success
I provided an example of what I do at home with my child who is verbal. We build structures into the day so every day is as predictable as possible. We get up, eat breakfast, go to school, come home, ‘relax’ on the iPad while I prepare dinner, eat dinner, play boardgame, have a bath, read a few books and then go to sleep. I shared that many families use visual schedules to show their child what’s happening which can help during transitions.
Kerri says that predictability affords a child the capacity for something else. They have a certain energy or battery capacity for the day. We’re making their day so predictable to reserve their capacity to problem solve things that come up that will challenge them, Kerri explains. Kerri aims to set a family up for success and finds that she can often see where minor shifts can help a family, such as the predictable routine.
Schedules are critical components. But she’s also looking at how they handle transitions and she’s looking at the profiles of the parents. Many parents struggle with their child not wanting to leave their screen to come upstairs to brush their teeth, for example. Her team recently did a social media post on double standards that helps the parent take the child’s perspective.
Kerri asks parents if they’re watching TV would they want to stop watching mid-show? She also thinks about parents being on autopilot, always in a go-go-go mode. Often families have something planned out in their head, but haven’t conveyed that to their child, she explains. In the brushing teeth example, she says, the plan wasn’t shared with the child, and the mother had beautiful reflections about it afterwards.
Parents’ plans aren’t transparent. She encourages them to share them in a clear and kind manner. Floortime is relationship-based. There’s nothing more than having solid relationships, including your relationship with yourself, Kerri says. She likes to help parents with having a schedule, visuals, and doing a lot of reflection about how transitions are being managed every day. Kerri created a document of 20 different transitions that parents may not even think of that she used with one client (some of which are documented here).
People moving into your space is a transition, for example. A child might find someone coming into their space to be very disruptive. Kerri continues that in standardized testing, the number one executive functioning challenge that comes up is shifting from one activity to another.
Kerri looks at all of the intricacies–which is what Floortime is, she adds–wondering about it together, and helping a family move away from the medical model, cookie cutter version of things. She instead gets them to think about where their child is getting caught up and struggling.
Kerri aims to figure out why parents are showing up the way they show up and what experiences brought them to where they are. She helps parents hold space for not judging that and empowering them. She says that we can all make a conscious decision to how we show up for ourselves and to others.
Tips for Parents
I asked Kerri that I can still hear parents asking, “What if I shared the plan with my child and they just won’t go along with it?” Kerri asks if it is a child who is aversive to demands (i.e., a PDA profile, aka Pathological Demand Avoidance, aka Pervasive Drive for Autonomy)? Kerri says that that can be an entire different case, but try to infuse a bit of humor, which can be hard at the end of the day as a parent.
She suggests giving autonomy to the child by asking things with tons of affect like, “Should we fly to the bathroom sink or march like soldiers?” Always gear this to the child’s interests so if they’re into sharks, ask, “Should be go like a hammerhead shark or fly like a great white?” Some kids might like a race to the bathroom, but it might trigger others. The child might prefer using one bathroom versus another. Think of what will peak their interest.
It might be sequencing that helps, Kerri continues. You might have to say that first we’ll brush teeth and then race cars to the bedroom. If kids are interested in books, she’ll suggest social stories. In a social story, she’ll start with a positive thing, then the experience of the child’s experience, such as “I might feel frustrated“. Next, you give them options like, “If I feel frustrated when mom asks me to brush my teeth, I can…”
I shared that Dr. Karen Levine said that the part where the child is scared is always left out of typical social stories! Educator Jackie Bartell always says we have to set the expectation, for example, “We have to brush our teeth.” In social story, Kerri says that what it’s doing is giving meaning to the social experience. Having meaning behind why the expectation is important then they might be more willing to do it.
You could also watch YouTube videos of what you want your child to be able to do. Dr. Karen Levine suggested doing this with my son around clipping his toenails, and he absolutely loved the video and asked to watch it repeatedly. Kerri asks who is the favourite aunt or uncle? Get a picture of them brushing their teeth, she said. I said you could also brush teeth together with your siblings or parents. Kerri said they also use dolls and brush their teeth.
Regarding giving agency, Kerri says that if they like the cartoon Paw Patrol, get them a Paw Patrol toothbrush. Also, beware of the flavours in case they don’t like mint, Kerri adds. The message here is to stay hopeful, Kerri encourages parents. Stay curious and you will find something that works. Sit in the space of “I’m going to figure it out“, she urges.
What to do about Screentime
Parents continually share that they struggle to get their child off the screen. Kerri first tries to understand the family’s opinion around technology. Some say it’s ok and it’s regulating, so there’s no limit. Other families see that the more screentime the child has, they have less opportunities for play and their instinct as parents is to get the child off the device. Kerri wonders how polarized it is between the different caregivers and wonders about what that looks like.
Research supports the claim that screens are wildly addictive, Kerri adds, and quotes Dr. Stuart Shanker who says that you can’t have self-control if you don’t have self regulation. She says that also Dr. Stanley Greenspan talked about the developing mind pointing out the importance of whether or not the child has the capacity to easily move away from a screen. Kerri reframes what that could feel like for a child.
For some kids, she explains, it’s a certain amount of time they’re allowed to use their screen. For some, the limit is one show. For others, it’s the type of show. A YouTube clip has a new screen cut every two to five seconds, but if you can find a show that stays with a plot, maybe that’s a better fit and can make for an easier transition away from it. Maybe you only make screentime available on the big television so the parent has control of the remote, she suggests.
Kerri has worked with bridging where she’ll have a picture to colour from the show they watch so when it ends she’ll stick with the content of what they watched by transitioning to colouring the picture. You can also use a step-away process where first a sound or a timer goes off, then you lose the picture. Next, you lose the sound. She says that you have to know your child and be willing to try things.
What is a brilliant game-changer strategy for one child can cause another child to melt down, Kerri emphasizes. Doubling down on outdoor time is an underutilized strategy, as well. Get out in nature with the sun on you, moving your body, away from constant stimulation inside walls with a lot of sounds and music. Sometimes our kids need to experience that. Kerri adds that if a child starts to understand what it feels like to be outside on a trampoline, on a scooter on a nature walk, or in the pool, and those neurochemicals start to feel really good, they might be more willing to put the screen down.
I also suggested making the screen a shared experience where you’re watching a show together and connecting around it, when you have time, but once you’re in the meltdown or struggle, it’s too hard to figure it out. Kerri likes the idea of stepping back and reflecting on it and how to make changes going forward. I’ve also heard that when a child has visual-spatial challenges, sometimes screentime can make it worse because we want them to see things in three dimensions, interactively in movement.
Being Prepared
Our brains are very nuanced, Kerri says, so let’s refer to the Floortime concept of attunement and look to our child’s cues to attune to them to figure out what feels like you’re moving in the right direction. And just like a child uses scripts, parents have to have their scripts, too, Kerri says, like a bank of things to say in that heated moment.
Your child might have a hard time to do some things spontaneous. Kerri has a Commonly Used Phrases document that parents can put on their phone and inside their kitchen cabinet or where they keep their glasses, to have it handy when you need to use it. These are things parents can say instead of asking a lot of questions, Kerri shares.
Kerri likes to talk about a sensory lifestyle where families are prepared, knowing the things everyone’s body needs to stay regulated. Kerri has tools to up- or down-regulate. To down-regulated an overstimulated child, she suggests reducing your pacing, anchoring yourself in space, and lowering your volume.
I shared that for transitions my son’s preschool had a soothing song “Tidy up… tidy up… everybody tidy up, let’s go” clapping to the slow rhythm that helped keep the children regulated. Kerri says that we always want to start the transition saying something the child likes in a calming way in the regulation and pacing in a way that works for your child.
Non Speaking Children
I asked Kerri how she works with families who have non speaking children who may have apraxia of speech and motor challenges. Kerri will demonstrate herself how to be with the child to take the pressure off of the parents for a moment. She wants to show how you get that shared social engagement and connection in a way that you presume competence and build beautiful reciprocity–a fundamental thing in early communication.
Kerri says that some families said to her that she came in and didn’t bombard them with a million questions and just connected with their child so they got to see her do it in real time. This is one of the best ways she says that they can support a family. She also notices another theme that comes up when a child isn’t talking. The family stops talking back, especially if there’s a verbal sibling. There’s not an intentional ignoring happening, but it ends up being that the non speaking child is ignored.
Kerri says that you have to think about creating opportunities for communication. Build reciprocity even if there isn’t a verbal output. I shared that the podcast on Preverbal Affective Signalling I did and the podcast on nurturing intentionality might be helpful where we discussed how holding that space with your child to see what the child does is so important, versus feeling the pressure to do something. Kerri stresses that a child can get used to nobody responding them so give up trying. Keep persisting and trying.
Floortime is about Shared joy
Kerri says that you are the toy for your child, and there are some toys that change the chemistry between you, such as blowing up a balloon or spinning toys. Sometimes having a ‘thing’ helps when parents say the child isn’t responding or initiating and they are stuck. The toy isn’t the answer, but it might be the spark, Kerri explains. When the parent sees the interaction, it ignites a bit of hope and less defeat and you can build from there.
When parents aren’t using a Floortime lens, they’re looking at things differently. I talk about looking at the strengths in the We chose play documentary. We were in the Hanen program and I’m blowing up a balloon and letting it go. My son had these beautiful strengths in his early Functional Emotional Developmental Capacities (FEDCs), but I didn’t have the DIR lens yet and only saw what he wasn’t doing. Since discovering Floortime, I’ve watched these FEDCs bloom in my son.
Look at your child’s strengths. Kerri often tells families to measure backwards. For families who really need to see that evidence, you can then see that in November the child wasn’t doing x, y, and z, but in July they are. They wouldn’t have believed it back in November. It’s powerful in the reflective process to look at how far you’ve come. You always want your child to be seen, heard, and loved at their fullest potential. It’s ok to want more, but celebrate where you are at.
Kerri's Resources Potential Triggers for a Neurodivergent Child * Potential Triggers for a Parent of a Neurodivergent Child * Commonly Used Phrases * Resource on Double Standards * Resource on Common Mistakes for Transitions * Therapy Keeper Instagram account This week’s PRACTICE TIP:*This week let’s think about the points Kerri shared with us and reflect on minor shifts we could make to help our connection with our child.
For example: Are you sometimes in too much of a rush and directing your child when your child has ‘behaviour’? Let’s think about how we can slow down, share our plan, use a visual schedule, and/or incorporate something your child likes into the transition using fun affect.
Thank you to Kerri for sharing her resources and telling us how she works with families in such great detail. Please visit her blog, her fabulous Instagram page, and resources at her website. I hope you found it as helpful as I did and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
Photo by Tima Miroshnichenko**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Episode
ToniAnn Loftus is DIR Expert and Speech-Language Pathologist. She trained at the Rebecca School and now owns and operates Seaport Speech and Feeding, a clinic in Manhattan. Today we are discussing inclusion in schools with a specific focus on speech and language and how she can bring the Developmental, Individual differences, and Relationship (DIR) Model into the classroom to make it accommodating for all students. This is a nice follow-up to my podcast with Kim Kredich who, along with her family, was a keynote speaker at the March DIR conference in New York City.
Bringing DIR Into the Classroom to Accommodate Communication for Allby Affect Autism
https://affectautism.com/wp-content/uploads/2024/08/2024-08-30.mp3Bonus Insights
DIR Parent Network click HERE
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Seaport Speech and Feeding
ToniAnn’s practice includes children from age 1 to 10. Depending on their needs, ToniAnn works with neurodivergent and neurotypical children at home and communicates with the school on their behalf. Sometimes does in-service work at the school where she’ll talk about what communication looks like, what development looks like, what sensory looks like, and how different communications come out, which can be through behaviour.
ToniAnn also sees children in her local community within the classroom. She’ll work with their Special Education Itinerant Teacher (SEIT 1:1 aids) and Occupational Therapists (OTs) to make sure their day is enriched with speech and language, such as joining their morning meeting or a cooking activity, and bring visuals for the classroom. She finds that the teachers will use the visuals for all of the kids in the classroom and continue to use them when her in-service is done.
Buy In from Classroom Teachers
I asked ToniAnn if she does a follow-up with the teachers. She finds that 99% of the teachers do follow-up and ask for more because maybe they have a child in their class who is on the quieter side and because of the changes they made after ToniAnn’s training, that child now feels like they have a voice using a visual aid in the classroom. She can also help the teacher take any book and help make it a Floortime experience for any class.
Many teachers and directors request learning more about sensory systems and Floortime after ToniAnn’s coaching and ask how to incorporate moving in their preschool. I commented that she must be thinking about movement so much due to her interdisciplinary work at the Rebecca School where she learned so much about the sensory system. Indeed, she says. She points out that you get a lot of buy-in from teachers when they recognize behaviours of children as sensory challenges or communication.
Movement and Meaning Making
After my DIR 202- The DIRFloortime Certificate of Proficiency Course, I had mentoring with an OT in Hawaii named Kiegan Blake who drilled that point into me about bringing what you’re playing into three dimensions. When my son was sliding down into the ‘water’, I used our blue lycra sheet as the water. It really helps with regulation at the first Functional Emotional Developmental Capacity (FEDC 1) and following the child’s interests if they like water.
Bringing the play into movement helps to solidify the concepts so the learning sinks in and motivates the child to communicate more since you’re using multiple parts of your brain, ToniAnn explains. Kids are more motivated to talk and communicate because they feel more successful, she says. They feel like they can point and gesture to communicate, even if their voice is failing them or they can’t get their words out due to apraxia of speech, for instance.
Toni Ann will ask children to show her what they want and if it’s a cup she’ll say the word ‘cup’, smiling. The child then gets to hold the cup to get the touch and feel of it and they’ll smile feeling understood. This motivates them to communicate more because they were understood. That joy at the second Functional Emotional Developmental Capacity (FEDC 2) makes them want to communicate more, ToniAnn explains, because you’re helping them form meaning.
Holding up a cue card of an apple doesn’t teach you about an apple as much as biting into an apple does, tasting it and feeling its weight, as Dr. Stanley Greenspan would describe. ToniAnn said that Dr. Gil Tippy explained to her when she first started working at the Rebecca School that if you haven’t heard the roar of the crowds, tasted the hotdog and felt the ketchup drip down on your chin, how can you be a Yankees fan?
When I joked that this is a very American example and that I didn’t like hotdogs nor ketchup, ToniAnn pointed out that even tasting the hotdog and not liking it is an emotional experience! ToniAnn added that many toddlers will eat something and make a yucky face while saying, “Yummy“. She will comment that it doesn’t look like it’s yummy. I shared that my son does the opposite. He says he doesn’t like it but then tastes it and wants more.
What about AAC?
Many parents in ICDL’s parent support group that I facilitate use Alternative and Augmentative Communication (AAC) devices with their non speaking children. ToniAnn said that she will introduce AAC to classrooms as many teachers are not trained to use AAC. She will often use visuals in classrooms for teachers first. It only helps communication. She will typically just observe the classroom for the first day to see how they’re phrasing what they’re saying. Are they making demands or just inviting comments?
ToniAnn tries to have them wonder how they can pay attention to everyone using AAC rather than centering out that one child who uses it. Everyone can use AAC in a functional way. I brought up how Andrew Klein brought up in our recent podcast on Reflective Practice about modelling and how this also came up in my Parent Perspectives podcast with Cass Griffin Bennett, who modelled both low and high tech AAC with her daughters.
I wondered how receptive teachers are to using AAC devices. ToniAnn explained that it’s tough on the teachers if they’re not supported. Most of the teachers have a general education background, but not working with special education needs. ToniAnn would rather they tell her that they have no knowledge about it upfront so she can support them. Getting the kids excited and involved in it helps them understand that it works for everyone, she shared.
Many of the students feel excited that there’s opportunities to learn within the context of their classroom when they can use AAC. Teachers see ToniAnn use it during morning meeting then are excited to use it the next day themselves. It’s like learning a new motor plan, ToniAnn explains. Having someone model it for you makes it easier and as they do it more and more, it becomes a new part of their day and doesn’t feel like a daunting new task.
Speech is a Fine Motor Skill
Speech is the finest motor task there is, ToniAnn explains. When we think about learning something new for the first time, speech is like a motor plan. We have an idea in our head, we want to execute the idea, and move our mouth in a coordinated way to produce speech, she continues. If we learn the word ‘cup’, for instance, we want to be able to say ‘cup’ every time. Joleen and Lynn’s course on praxis and motor planning for speech is one ToniAnn recommends to practitioners.
ToniAnn talked about how when you start with gross motor movements so kids have to think less about their movements, their fine motor will eventually improve. Let’s teach kids how to use words while they run and jump first, ToniAnn suggests. We want to think about how you can break it down and make it easier. If you work more on gross motor, kids feel more successful, then eventually you move on to the fine motor skills, she says.
It’s not just about the sensory system and vestibular on the swing and then their sensory systems are awake you talk more, ToniAnn said. It’s about the mechanics of their mouth, how they move, and how your brain works, she explained. I shared how we had worked with Occupational Therapist Maude Le Roux going to her clinic’s intensives and my son had a phase where he started licking everything, starting with licking his dad’s face, then his friends at school.
Maude’s theory was that because he had gone through a round of Tomatis listening therapy to effect auditory processing, she believed his mouth was starting to awaken and feel new sensations to clarify how he spoke. Although I could mostly understand him, others couldn’t. Toni Ann said that it’s all interconnected. It’s all the brain processing information. His brain was trying to gain more information Licking felt good and gave him more information. Every child is different.
Development Doesn’t Skip Steps
When our kids are developing and not on a neurotypical pathway, they do things that neurotypical kids do years later, such as mouthing objects that babies do. My son did that when he was 3 or 4. Gene Christian talked about children grabbing parents’ glasses. Babies reach for their parents’ face and our kids are doing it later. My son started pointing at things about four or so years after they were asking me at appointments if he was pointing.
Development doesn’t skip steps, Toni Ann, says. Everything builds on everything else. That’s why she loves Floortime. Everyone follows a developmental plan and everyone will go at different rates. Toni Ann’s 4-year-old son burnt his tongue on hot soup and couldn’t tell her, so he looked at her and licked her hand. He was trying to get whatever was going on with his tongue off. It clued Toni Ann in to the reason and she realized he burnt his tongue and was able to tell him what happened to him.
A Focus on Communication
There are children on the autism spectrum who don’t start speaking at all sometimes until they are 6 or 7. ICDL’s board president Emile Gouws did not speak until he was 15. People didn’t think he would ever talk. There will be some autistic individuals who will never speak. They will use AAC devices to communicate. Dr. Joleen Fernald said that she’ll never make a prediction again about which children will or won’t speak after being wrong about it in the past.
I asked ToniAnn how we approach this with parents or teachers. She asks them how they feel when they are given a question in a crowd. Would it make them more or less likely to be able to respond? They maybe never thought of it as feeling like a quiz, she says. There’s talking versus communication. ToniAnn focuses on communication and how we can enhance it. After a few sessions with her, she can say, “Look how much better they are motor planning and letting us know what they want.“
We are always looking to improve a little bit more, ToniAnn says. We want to think about how we can support our child to feel heard. Let’s give the child space to show us how they feel most comfortable communicating. This will be a lifelong process, ToniAnn stresses, figuring out how they want to communicate. She has met kids who are poets, but don’t use verbal speech. Let’s celebrate each child as an individual, she emphasizes again.
Things are Slowly Changing
The world is slowly starting to understand that different children communicate differently, ToniAnn believes. Now people understand that each individual is different and the way we each learn is different, which makes it harder for teachers, but it’s starting to be recognized. Ideally we want teachers to notice “That’s different. Let’s celebrate it and support it” versus saying “I can’t do that!“
At the Rebecca School, ToniAnn shares, they would take the students out into the community and one time at Trader Joe’s a student started throwing apples. Her regulation plummeted along with the child’s. A worker there recognized them and introduced himself to the child and asked his name. He explained that we can’t throw the apples and asked him to help pick them up. It was so kind and supportive, letting the child have the time he needed to pick up the apples and put them back.
Process over product, ToniAnn says. That person could have been angry at Toni Ann or the child, but was instead supportive. Toni Ann taught a DIR 101 Introduction to DIR and DIRFloortime course in Heber Springs, AK where people from the entire town came to learn: the Walmart greeter, a police officer, teachers, parents, the librarian–they all came to learn how to interact with autistic kids in a way that’s productive for families versus being punitive and were there to learn how to support each other.
How do we have a sensory space in the library to support the children during storytime, for instance, was a wondering. A bunch of them then took the Basic Certificate Course, DIR 201 with ToniAnn and a few went on to the next course, DIR 202, as well, with another trainer. It was such a great experience for ToniAnn to see this community’s dedication.
Promoting Communication
Autistic self-advocates advise providing AAC as early as possible while children are learning, even if they do end up speaking. Even if they do end up speaking, some individuals will prefer texting over speaking verbally. ToniAnn says she, herself, prefers texting so she can think about her response. By asking adults how they communicate, it gives them insight into how their child might communicate.
Toni Ann shared her use of low tech AAC with her son on her Instagram account. She put pictures of the snacks that were in the cupboard. Her son would point to what he wanted, then open the cupboard and get it. It helped solidify the meaning of what each picture meant until he could speak, ToniAnn explained. If she had drilled him to say that he wanted a ‘bar’, it would have made him feel anxious. She is more interested in overall communication. The nonverbal comes before the verbal.
We talked about recognizing cues our children provide which is their way of communicating if they can’t make their body or mouth work how they want. ToniAnn shared that Dr. Gil Tippy presented a talk called, “What are you doing?” to the Rebecca School staff about how you walk into a room and read the cues of everyone to figure out how to enter the space just ‘being’ versus ‘doing’, gauging the environment before engaging in big affective communication.
ToniAnn will observe how a parent is interacting with their child and see if it’s a match. Video recording is so helpful so you can see how far a child has come, but also so you can see how you are at reading their cues. The way a child reacts might tell you that you’re giving them too much information with your face, affect, and volume, for instance, ToniAnn explains.
Too Much Communication
I asked ToniAnn about kids who talk a lot. Toni Ann says it’s serving a purpose. It could have to do with liking the auditory input. If you are in a home where the TV is always on in the background and people are talking, that input feels good to you. If the classroom is quiet, maybe they are talking to get that feeling. It ‘could’ be a reason why. How can we give that child more input to make them feel more comfortable?
Maybe you can start with every child having a chance to give a shout out to start the day, ToniAnn offers. Reframing is always helpful. You can reframe what a student is doing. They’re seeking auditory input or more movement, so think about how we can help them get that in different ways.
More Helpful Tips
Use visuals, ToniAnn stresses. Visuals are simple. You can use your mobile phone to take photos of places you go, your child’s school, and things they do around the house so they can visualize what’s happening. Having a red circle on the floor where they sit during morning meeting can support them going to morning meeting. Having a rolodex of things in their classroom that can help, ToniAnn suggests.
ToniAnn also suggests using picture boards on the back of their IDs for when they’re out in the community. It’s one thing to say we’re going to a new park today versus showing a photo of where you’re going and saying that it’s a new park. Take the time to explain and show the visuals because it is very helpful, she says.
Working with the deaf and blind community, ToniAnn has also learned about backgrounds. A black background with white print is easier to see than black type on a white background. You can label pictures with words. Think about things as a whole in the classroom that we can then use for everybody, ToniAnn suggests.
At Seaport Therapy, ToniAnn can help parents wherever they are, virtually. Sometimes it just takes a tiny little tweak to make a big difference. She learned so much at Rebecca School working with Dr. Gil Tippy, Toni Tortora, Andrew Klein and so many more. She is grateful for all of the training that lead her to where she is today.
Floortime is for Everyone
Floortime is for everyone, ToniAnn shares. It helps understand how we are learners. Getting DIR into more schools and to more teachers will open doors. Floortime is not just for kids with specific challenges and support needs. ToniAnn is excited to share that with others. They’ll start to think about things they can ask Occupational Therapists (OTs) and bring them into the classrooms. They’ll consider how to support kids on the patio and kids jumping all over each other. OTs should be in every school. If we start looking through this DIR lens, schools could be more inclusive, ToniAnn concludes.
This week’s PRACTICE TIP:This week let’s use visuals with our child, if we don’t already, to provide alternatives to communicating and be mindful of not being too demanding with questions.
For example: Take photos of places you go to regularly and/or items around the home that you use, and show them to your child to inform them of where you’ll go frequently before you go, and/or giving them choices between items you have in the home–whether toys, food, clothes, or something else.
Thank you to Toni Ann Loftus for taking the time to record this episode with me about promoting communication for all in the classroom. I hope you found it helpful and insightful, and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
Photo by NEOSiAM 2024+**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Topic
The topic of this episode is trauma through a DIR/Floortime lens. Maude Le Roux recently did a course on this topic through the International Council on Development and Learning and here she covers how to work with trauma clients through the Functional Emotional Developmental Capacities (FEDCs). This complements the previous trauma-related podcasts I’ve done with Galina Itskovich and Erin Forward and Taylor Anderson and focuses on the DIR/Floortime aspect of the work.
This Week’s Guest
Our returning guest, DIR Expert and Training Leader and Occupational Therapist Maude Le Roux has a DIR/Floortime clinic, A Total Approach, just outside Philadelphia, and a satellite location just outside Allentown, PA. She is an international trainer in many other modalities as well.
Trauma through a DIR Lensby Affect Autism
https://affectautism.com/wp-content/uploads/2024/08/2024-08-16.mp3Bonus Insights
DIR Parent Network click HERE
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Trauma and Autism
Everybody’s talking about trauma and there are so many podcasts, blogs and articles about it. I haven’t felt worthy of covering this topic for a long time in a head-on way, but Maude is joining me this episode to take a DIR lens to the topic. My son’s medical trauma and the trauma I still face when I think about what happened to him, being in the hospital for four months following severe brain inflammation at the age of two, is one type of trauma. Autistic self-advocates talk about the trauma they face from attempts at being normalized by adults throughout their childhood.
Maude begins from the platform of an autistic individual having trauma. She points out that there are a lot of pieces to consider. Trauma is housed in the brain, even if we don’t recall it everyday. Trauma in an autistic’s life can be very different from other types of trauma, she says. They might be going through trauma, but because somebody says to them, “This is our secret“, they keep the secret. It will come out behaviourally, perhaps through stimming, and it’s just labelled as autistic behaviour. We may be missing the cues when autistic individuals are going through trauma, which is very tough.
In trauma you have the same structures that may be enhanced, like in the amygdala, that are enhanced in autism as well. Then, the biggest intervention in trauma is talk therapy. How can you do talk therapy with someone who doesn’t understand how to describe the emotions they are feeling? There are so many things to think about, Maude continues. The experience of trauma is very real. The numbers of trauma and anxiety are staggering, Maude says. Exponentially, autistic individuals are four times more likely than the neurotypical population to experience trauma when looking at the ACES data (Adverse Childhood Experiences).
At FEDC 1
Since the beginning of being asked to work with teams around trauma, Maude has used DIR/Floortime because it just fits her and the way she likes to work with anyone. It’s respectful and makes sure you are harnessing the individual differences. When considering the first Functional Emotional Developmental Capacity (FEDC 1), Self-Regulation and Interest in the World, we want to think about what self-regulation means and what having a regulated system means, Maude asserts. It’s a safety system.
The Functional Emotional Developmental Capacities (FEDCs) in DIR/FloortimeFEDC 1: Self-Regulation and Interest in the World
FEDC 2: Engaging and Relating
FEDC 3: Intentionality and Two-Way Communication
FEDC 4: Complex Communication and Shared Problem Solving
FEDC 5: Using Symbols and Creating Emotional Ideas
FEDC 6: Logical Thinking and Building Bridges between Ideas
FEDC 7: Multiple Perspectives
FEDC 8: Gray Area Thinking
FEDC 9: Reflective Thinking and an Internal Standard of Self
When you’re looking at trauma and FEDC 1, regulation is about getting into that safe zone so you can comply to the rigor of everyday life and meet performance expectations, Maude explains. When you’re looking at regulation in trauma-informed care, you’re looking at how to create safety and providing that container within which the individual can find a ‘place of landing’, having an anchor to co-regulate and pivot around to create this order of safety.
When you’re working with trauma in autism, Maude continues, you have to know that the regulatory system will keep resurfacing even more when you’re doing the trauma work. If you’re talking not autism, every single FEDC capacity that you’re climbing is going to be a place where dysregulation can happen at a much more rapid rate. The trigger of the super vigilance of the sympathetic arousal is so high in individuals who are trauma survivors, Maude explains.
So when you’re looking at FEDC 1, you may see in a non-autistic population, that they’re highly verbal and in the emotional phases at FEDC 5, but needing the safety of FEDC 1 throughout the entire process. You’re not looking at them as ‘levels’ of a step ladder. Regulation is always a consideration. The concepts of Floortime (co-regulation, wait-watch-wonder, pacing at their pace, joining them where they are at)–all of these wonderful, golden techniques–are so instrumental for trauma survivors.
The Safety Principle
The first thing that came to my mind as Maude and I were talking was an autistic child whose parents put their child in an intervention that tries to normalize them and every time the child sees that person, they’re going to get dysregulated. It may take them hours to calm down and feel safe again after being with that person who is making them do things that are unnatural to who they are.
Maude says that’s why it is so critical with the lens we are operating from. Yes, there’s the trauma lens, but what are our own biases and frames of reference, Maude wonders. It doesn’t matter what population we are serving. Safety becomes the therapy she insists. We have to beware of violating that safety principle.
If you look at the work of Dr. Stephen Porges on social engagement and the ladder that’s climbed from the ventral vagal, dorsal vagal to sympathetic arousal and the beautiful work of Deb Dana, Maude continues, we know about that co-regulation response from that neuroceptive “am I safe here or not” feeling. When you add in these components, Maude says, you can realize that you might be working at FEDC 5 to 9, but you still need to be working on safety with trauma clients.
If the safety is violated by a particular technique, Maude continues, that will add on to what has already happened to them, she asserts. In trauma-informed care, besides creating that safe ‘container’, thinking of the use of self in co-regulation, looking at not only the individual differences as the profile is now, you also have to remember that the trauma is never over when it’s over. The trauma trigger can be just as alive and real even if it’s years later, Maude states. The past becomes the present. You are re-triggering and re-traumatizing the individual.
Talk therapists are shifting in their dialogue from wanting survivors to talk through their trauma, and focusing more on working on the body and how it’s holding and keeping the score, as Bessel Van Der Kolk says. As therapists, it’s a serious consideration: Am I adding to the trauma, or am I allowing the person to be who they need to be in this moment? So, in therapy, Maude says, it’s essential what kind of a framework you choose.
Lingering trauma
A few thoughts came to me. We can think about a child or pet who was abused by a man and they are then scared of all males. The trauma stays alive and comes back when they see men. When my son had brain inflammation, I was an emotional wreck and my husband said to me, “Do you like being depressed? Why are you watching all of these stories of people who went through what we did?” while I was wondering why I never saw him cry about what happened to our son.
Then my mother-in-law had a conversation with me saying that everyone processes these experiences differently. When she is sad, she likes to watch a sad movie to cry to so it comes out. At some point days later, I came home to my husband telling me he watched a sad movie about a man who cared for an autistic son then found out he was dying and he said that he balled his eyes out. I realized that this was his way of letting out the grief of what happened to our son.
Trauma doesn’t have to be physical or sexual abuse or something super horrific. There are so many types of trauma. When we moved out of downtown Toronto to be closer to our son’s school, I was out for a run and saw young boys playing baseball and was struck with sadness from out of the blue, realizing that my son would never play little league baseball like my brother and I did growing up.
Trauma can hit us when we don’t expect it. Many parents of autistic kids have these experiences, and this gets into the concept of Ambiguous Loss that I discussed with Dr. Robert Naseef.
The Traffic Circle of Frustration
Another thought I had about what Maude said was that Dr. Gordon Neufeld talks about emotional playgrounds. One thing he finds astounding is that people avoiding emotional healing, which is the way around everything: to soften the heart and feel these emotions, which means feeling that sadness about things you can’t control. That emotional release is what helps your brain adapt and move forward with resilience, he states.
His whole definition of resilience is to have the tears (physically crying, which contain cortisol the stress hormone), or sadness about realizing that there’s nothing more you can do versus being stuck in that traffic circle of frustration and anger where you circle around and around trying to change stuff that you have no control over. In his work he talks about that shift from being in that traffic circle to adaptation.
Think about how frustrating and traumatic it must be to be in a body that doesn’t do what you want it to do when you have severe co-occurrences with autism. We are hearing now from autistic adults who have learned to spell or communicate in other ways that they understood everything happening in their childhood but couldn’t communicate that.
Feeling ‘Felt’
As a therapist in the room, Maude says, we are resonators of feeling felt, heard, and seen because when you’re a trauma survivor you feel like you don’t have a rightful place and feel unworthy. Any trauma is not chosen. It happens to you and you have to wonder why it happened, Maude says, and everybody struggles with that. This changes the way you build your self-identity.
All of us wish to get around these struggles versus going through them. This is not the talk for today, though, Maude insists. The issue is that every experience that we have depends on our own temperament and resilience that we have, and as Neufeld says, we are too focused on the end product in which we lose the process of how we get there.
The truth of all the empathy research is that we need to have empathy for ourself as a trauma survivor, Maude explains, and then empathy that we can then shape to feel for someone else, too, so the community at large can have compassion for each other. This is a very different animal. That comes only from that processed orientation to emotion.
The DIR Way
Maude often says to families when someone important passes away that you should bring the child to the funeral. You need to find a way for the child to express the fear and anxiety, rather than avoiding it to ‘protect’ the child. A lot of the work in trauma, too, lies in FEDC 5 when we’re trying to get some symbolic understanding of what the trauma means to my life, how do I embody what has happened to me, how do I figure out where I stop and where someone else starts, and that I have an identity and it’s not broken.
Something happened, and it’s hard, but I’m not broken. I’m here. When we, as therapists, Maude continues, in DIR/Floortime show the client that I’m here for you and you matter, that my time with you is a worthy time spent, and that I find myself valuing our time together–when we give that message–the client gets it, Maude says. That’s the Floortime way. We’re going to be together. We have this time where we can value each other. At the end of the day, we know that being with each other matters, Maude stresses.
At FEDC 2
This is where the Floortime perspective and the use of self comes in so much, Maude insists. When we look at FEDC 2 (Engaging and Relating), it’s a crucial place for a trauma survivor because what they want to do is disengage or dissociate. They want to go through the motions, but don’t really want to be in the moment because ‘in the moment’ may bring them too close to feeling what they don’t want to be feeling–the triggering, the flashbacks, or that the therapist is going to expect more of me than I’m prepared to give.
Maude specifies that we’re not talking about the same engagement challenges from an autistic individual that is avoiding because of individual differences or not understanding the moment in a fragmented moment of time. It’s a different flavour when you’re working with trauma, Maude says, and the combination of trauma and autism can be really hard. When you’re working with a trauma survivor on engagement, you’re working on messaging. Whether the client shares the details or not, we’re stressing that you matter enough for me to engage with, Maude explains.
Maude says that we can say to parents, “This was hard.” There’s nothing we can do to change it. It is what it is, but we can say that we want to spend time with you and make it happen for you and take this journey with you, together. When you do this, in the DIR way, the family feels at home. It opens up and enlarges the picture. It’s not just a bubble around them that’s feeling so hard. As a therapist, you can expand the bubble to include one more in the family’s village to take this journey forward. It is powerful.
The Safety is the Therapy
If I think about my son’s experience, as I mentioned in the podcast about medically complex children, whenever my son sees someone with a band aid on, he gets triggered. He had numerous IV changes and blood tests in the hospital when he was 2 years old. He is so concerned when he sees a band aid or ‘boo boo’ on others. In a Floortime way, we can explore that.
Maude says that there’s so many things about fear and in psychotherapy they can do exposure therapy. But what we often see, Maude explains, is that when you create the safe space, children know themselves what they need to work on. In trauma, she’s seen it over and over. When a band aid is an issue, it will come up. She doesn’t even have to initiate it.
When the safety is there, they will face their fears, but without the safety, there’s no holding them because they can’t face it alone. This is why she says that safety is the therapy, and the playful approach is the approach that provides the safety. Maude gave an example of a child who played with having predators in a jungle, with all of them facing towards the middle of the scene. The child played, talking herself through it, making the animals come closer then go back.
Then, the child took a little toy toilet and put it in the middle of the play. The child wants to do a sleepover so badly, but wets the bed. The toilet went in the middle of the scene and she didn’t touch it as she played with the predator animals around her, representing the threat of the bed-wetting issue. The therapist didn’t say anything about the toilet. The child needed to face the threat and be the animals and also be the victim.
Two weeks later, the child stopped bed wetting. They didn’t even talk about it. It’s the beauty of the Floortime method, Maude says. The child knows where they need to go. Some of it is hard stuff, Maude says, but when you create this safe container, the healing starts from within. And it’s their process. I mentioned that in Maude’s trauma course, the example was a child who had experienced intense trauma and Maude showed how they went through the FEDCs in their play with the child.
The Brain Doesn’t Forget
It makes me think that that’s why my son is so interested in people getting hurt in shows he watches and playing with figures having broken limbs, putting a cast on them, and going to the hospital after all of his fears around having been in the hospital when he was two that are probably subconscious at this point. Even going to the dentist can be traumatic when strangers come at you wearing a mask and gloves, carrying tools, for a child who’s had medical trauma.
Maude brought up another complex case she worked on where a girl seemed completely fine except that she could not handle buttons of any kind. They had to do a lot of hard digging. They found that the child was in and out of the hospital as an infant and the nurses would lay her against their chest where there were buttons on their shirts. That feeling of buttons brought back the trauma and was part of the trauma trigger. It was such a learning curve to figure out what it was because there was no tactile defensiveness. The brain doesn’t forget, Maude says.
At FEDC 3
The way memories are laid down is through the sensations of the moment and the emotions associated to those sensations, Maude explains. Anyone working with sensory or emotional trauma clients could trigger them, Maude says. That’s why DIR is such a safe method, with regulation, engagement, then working on the two-way discourse providing a medium of safety.
The activity doesn’t matter. There’s a rhythm of back-and-forth. Eventually up pops the thought from the client, Maude shares. In trauma, you have to be careful with that because in Floortime you’d usually say, “Hmm… I’m confused” whereas in trauma, you don’t, Maude asserts. Maude explains that if the client is already at FEDC 5 and 6, her and her team are just adding the foundation at FEDC 3 and 4 to give the client a better time at FEDC 5 and 6.
In trauma, they’d just keep the back-and-forth going at FEDC 3 because you know the memories are coming up in fragments. When you dream at night, it’s not really sequential, Maude says. It’s fragmented. It’s also what happens when these fragments of memories come through in therapy, she explains. You just accept it. If you said, “Wait, I’m confused” they’d shut down. So you just go with it in trauma, which is different than working at FEDC 3 with autism, Maude explains.
At FEDC 4
Maude continues that at FEDC 4, having the structure is as important as with anyone. Depending on when the trauma occurred, the client may struggle with the stages of structure–building enough of the amygdala, the praxis, and motor planning in getting there. The client’s nervous system got stuck at the time that the trauma occurred.
Then the development that had to come after that which is still part of myelinating the brain, Maude says, doesn’t happen at the stage or age that you want it to be, so you have to re-structure FEDC 4 and spend a lot of good time there to help them find a place where the emotion can land, Maude explains. They create many, many stories.
Another thing that’s different from autism, Maude continues, is that when a client is building their structures of stories in FEDC 4 in Floortime, we tend to put playful obstruction in there to get the sequences out in that problem-solving, but in trauma you don’t. You will do the whole thing about role play and make sure they’re taking in your role, as well as their role, and you don’t challenge as you might in FEDC 4 in autism.
Instead, you work on constructive problem-solving from their notion and their perceived reality, Maude stresses, because their perception of the reality is going to be very skewed, based on what they’ve experienced, and a lot of that reality distinction doesn’t happen until FEDC 6. But in FEDC 4, you’re putting down the structure on which that reality base can land later to improve their perception that this present moment is the present moment and the past is the past, Maude offers.
At FEDC 5 and 6
You are creating experiences in FEDC 5 and 6 where the client is having many more positive experiences around the same emotions that, over time, can replace the bad memories associated with the same triggers, sensations, and emotions, Maude continues. The more you’re building those positive experiences with the same emotions and sensations, the further away you can move away from being triggered, even though you can’t forget. It’s about decreasing the impact of the trigger, Maude shares.
I shared that if anyone hasn’t yet listened to the previous three podcasts, and especially the last podcast where Maude talked about building the structure at FEDC 4 for FEDC 5, please go back and look at it so you can better grasp what Maude is talking about.
Parent Regret
What I heard Maude say answered the question I had in my mind. Parents often regret giving their child an intervention that may have caused their child trauma thinking that their child will never forget and be triggered by them. Maude just said that we can work through those experiences in play and work through the FEDCs to recreate a new, safe environment that can slowly overshadow the old experiences.
Maude says that you only know what to do at the time you know how to do it. What you did at the time is what you thought was best, so be kind to yourself. Our brain is plastic until the day we leave this earth, Maude states. You can change any brain, despite the child’s age. Can we say perfection? Nobody’s perfect. But we can make it functional and we can decrease the triggers over time when we apply safety and security, she says.
This is where we need to know who is in the village around you. Are they speaking the same language? One thing that DIR/Floortime gives us is that the social worker can do it, the speech therapist can do it, the educator can do it, the occupational therapist can do it. They all talk the same language, which is so much less confusing for the child.
When we all do that, one is not doing exposure therapy while another is doing injection therapy and vagus nerve stimulation, another is doing DBT, and another CBT. Is the team all using the same sense of safety? Maude has had sessions where she simply sat on the couch watching YouTube videos with a client. She’s seeking a sense of connection because the child isn’t willing to give. She’s trying to enter the child’s world to be able to bring them into her world to show the child it can be safe.
Parents, let the bus of the past go by, Maude suggests. She knows it’s not easy. You did the best you could at the time. Every decision you made, you made because you thought it was good for your child, and that must be ok. Maude hopes that families choose DIR.
Magnitude of the Trauma
Trauma is such a loaded word. When you talk about the ACES (Adverse Childhood Experiences) such as poverty, war, divorce, abuse, etc., these can all be labelled as trauma and everyone experiences trauma differently. But, there is a feeling out there that some traumas are worse than others, so I asked Maude what the idea of little ‘t’ is where there’s a bunch of little traumas that add up over time (versus being raped or watching your parents getting murdered or some horrendous trauma).
Maude says that it’s only the perception of the child at the time. What might look to us as a little ‘t’ trauma, may have been big in the child’s perception and that memory stays big until they get through it which is until we can get through it in a way that can transpose of the magnitude of the event. The perception of the trauma survivor at the age and stage that it happened is what is the magnitude of the trauma, not how we as adults look at it, Maude says.
The parent or adult can think that the child is being overly sensitive. It may be a little ‘t’ for us, but in the child’s perception, if it was a huge piece for them, then we better take it seriously, Maude cautions. If the perception is the bigger piece of it, we need to really consider that even the small ‘t’ can linger for a very long time, and it does in Maude’s experience. It therefore behooves her to really look at it without regard to how big or small the event was in our, the adult, perception.
Stimming and Trauma
I asked Maude about what she meant when she said earlier that some autistics who have been through trauma might stim more. She said that you need to pay very close attention to stimming if there has been trauma. Most Floortime therapists don’t call on stimming. We know the client’s individual differences and that their vestibular system needs support, and perhaps they’re trying to access vestibular input through their visual system, for instance. There is a reason for it. Always give space for the stimming.
Maude says that she is trying to figure out why the individual needs to stim right now. What happened just before this? Maybe this was a release after a hard activity. She will allow them to release the tension then redirect to a movement activity to allow them to release it through the movement. Maude starts to see that the client gets relief from the movement activity, such as going on a swing, for instance. Where there is stimming from trauma or a sensory need, it’s the same, Maude says, but she might give it a bit more time, depending on the individual’s profile.
DIR is a Valid Approach for Trauma
DIR is a valid method for trauma in many ways, Maude says. The DIR/Floortime approach is a respectful, warm, embracing way of helping somebody feel that they’re worthy and that “I want to be with you and I want you to be with me and I want you to feel felt and feel me. I want you to see my kind eyes and voice so you can reach within and bring yourself in the moment.” Maude hasn’t found another method that works as well.
Plus DIR is developmental. Plus it’s respectful to the unique individual differences. Plus it enhances the family and brings the parent to a place where they can connect with the child. Floortime just gives you this fullness that can reach out at so many different levels and bring peace, Maude shares. If we do this, tomorrow will always be there. Maude always says that today is the scaffold for tomorrow.
If I harness this moment today, Maude continues, then tomorrow already looks brighter because I use what I have. This is what I have. I can’t control what happened in the past, but I can work on what I have now. Making today count is so helpful to decrease the anxiety about tomorrow. I added that all of this is through the power of relationships and through connection with each other.
This week’s PRACTICE TIP:This week let’s practice creating and/or maintaining that place of safety for our child.
For example: Are we putting extra demands on our child that we need not be doing? Let’s attune to our child’s emotional state to make sure they are not shutting down in response to us by ‘collecting before directing’, joining them in their interests and sharing joy together at their pace for as many moments of the day as we can–especially on the weekends.
Thank you to Maude for this informative podcast that really was helpful for me in understanding how to use the DIR lens in thinking about trauma. I hope that you found it as helpful as I did and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
Photo by cottonbro studio**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Topic
The topic of this episode is to give an overview and review of the fourth Functional Emotional Developmental Capacity (FEDC 4) of the Developmental, Individual differences, and Relationship (DIR) Model from last episode, an overview of the fifth FEDC, and to discuss how one moves through FEDC 4 into FEDC 5.
This Week’s Guest
Our returning guest, DIR Expert and Training Leader and Occupational Therapist Maude Le Roux has a DIR/Floortime clinic, A Total Approach, in Glen Mills, PA, just outside Philadelphia and a satellite location just outside Allentown, PA. She is an international trainer in many other modalities as well.
Developing Through FEDC 4 into FEDC 5by Affect Autism
https://affectautism.com/wp-content/uploads/2024/08/2024-08-02-FEDC5.mp3Bonus Insights
DIR Parent Network click HERE
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!The Fourth Functional Emotional Developmental Capacity (FEDC 4)
Two episodes ago, we talked about the third Functional Emotional Developmental Capacity (FEDC 3) and moving into FEDC 4. Last episode we dove into FEDC 4, and this week we are recapping FEDC 4 and bridging to FEDC 5 in the Developmental, Individual differences, Relationship-based (DIR) Model. Maude says that everyone always asks if their child is there yet, about FEDC 4, and the bridge between FEDC 3 and FEDC 4 is a huge bridge to climb.
The Functional Emotional Developmental Capacities (FEDCs) in DIR/FloortimeFEDC 1: Self-Regulation and Interest in the World
FEDC 2: Engaging and Relating
FEDC 3: Intentionality and Two-Way Communication
FEDC 4: Complex Communication and Shared Problem Solving
FEDC 5: Using Symbols and Creating Emotional Ideas
FEDC 6: Logical Thinking and Building Bridges between Ideas
FEDC 7: Multiple Perspectives
FEDC 8: Gray Area Thinking
FEDC 9: Reflective Thinking and an Internal Standard of Self
FEDC 4 is the structure on which everything lands, Maude explains. It’s the whole social-emotional understanding of having a social discourse and problem solving around a social-emotional level of being. If I want you to understand my thoughts without me always explaining them, then we need to have FEDC 4 in place, Maude explains. Theory of Mind–understanding another’s perspective–is where we get that ‘shared’ part of problem solving. The important word there is ‘shared’, Maude continues.
It’s not cognitive problem solving. How do we help each other to understand my thoughts versus your thoughts, and my opinion versus yours? How do we negotiate now that I will pretend to be Captain Hook and you’ll be the pirate, and then we’ll switch around? When we understand standing in another’s shoes, the beautiful work of empathy starts, which is the food of shared problem solving, Maude says. Maude says it’s emotional. It’s cognitive. It’s language. It’s practical on a praxis level. That’s where the depth of FEDC 4 really lies, she says.
We can construct what the jail will look like, how many bars it will have, that it will have a key, and we figure out how to build and structure it from our mind. We have to negotiate if we now have the praxis piece of the sequence of the structure, then how do we lay the sequence of pragmatic speech on top of that, then how do we take both of those constructs and put the story onto it that develops from the beginning, middle, and end, that contains visualization, ideation, imagination, and creativity.
When we then bridge into FEDC 5, Maude continues, the sympathetic arousal that comes with emotions has a place to land. If FEDC 4 is not in place, there’s no place for the emotions to land, and there’s no construct to hold them, and no container to understand them. There’s only a fear that the emotions will be overwhelming. When we have FEDC 4, then when we get into the true depth of the plot and understand what each emotion is, then we have to be sure that the child has the capacity to hold and contain it and not feel overwhelmed, Maude explains.
Bridging into FEDC 5
When I started learning about Floortime, Dr. Gil Tippy told me the biggest leap is that jump from the concrete world to the abstract world, which he felt happened at FEDC 5, whereas Dr. Greenspan thought that happened at FEDC 4. Once you can co-regulate off of another person, you no longer need to have catastrophic emotional reactions. I like the way Maude described that the emotions have nowhere to land without FEDC 4.
I couldn’t wait for imaginary play to start in my son and many starting out place imaginary play in FEDC 5, but it actually starts in FEDC 4. Maude says that at a rudimentary level, which is representational–the child represents what they see people in their life do and put that into some frame of understanding for themselves in their play, or imitate scenes they see in a movie–imaginary play starts in FEDC 4. A child will stay with what they’ve seen.
It’s only when you start expanding away from that, by adding more complexity with more emotionality that you bridge into FEDC 5, Maude says. There is an emotional component in FEDC 4, for sure. Dr. Stanley Greenspan used to say that the only way you get to FEDC 5 is if you have 60 or more ideas in one session, Maude recalls.
That ideation doesn’t mean it has to be full-blown emotional recognition. It means there’s a bridge that collapsed, and I can make a plan to fix it, Maude explains. I don’t have an airplane right now, but I can make this cell phone look like one in my mind.
A ‘Container’ to Fall Back Onto In FEDC 4, Maude continues, you start to visualize and put things to the concrete in front of you that don’t have to be completely concrete. Visualization is a structure from visual-spatial skills and FEDC 4 is where that happens, she says.
When you have an emotion, you get a sympathetic arousal. How do you discern the emotion so you don’t become overwhelmed if you don’t understand what’s happening when you get the physical response from it and don’t have anywhere to place it? Social becomes a scary world here, Maude cautions.
In FEDC 4, when things come a bit more contained for you, you can start to make sense of why Mommy is giving the soother to your sibling and you want her to spend more time with you. You can wonder what the limits in this preschool class are. If you don’t have a structure, it remains scary and something to be avoided, Maude explains.
If kids can’t bridge into FEDC 4, they want to skip FEDC 5, and use cognitive logic and cognitive ways of becoming more left-brain, systemizing problems into certain categories, and if it doesn’t fit, they’ll avoid it, because the emotional grayness that we need in FEDC 5 is not available. There’s not enough structure for it to land, so they pull away cognitive skill from their structured executive, praxis ability.
As it pulls away more and more, the disconnect between mind and body grows, Maude explains. The big piece we need to take that executive function to a place where the emotion can feel safe enough to explore is FEDC 4, so it’s crucial. Don’t rush it. Stay with it. The sturdier it is, the more we can do in FEDC 5, Maude encourages.
Staying at FEDC 4
I remembered my son being at Maude’s clinic wanting to build a big wall out of the firm, colourful pillow gym blocks. Maude said he had the ideas, but didn’t have the motor planning to build it himself, so he’d tell others to do it. He would place a triangle piece down on the tip so it would fall over. Motor planning comes in FEDC 4.
Maude also talked about beginning, middle, and end, and having timing and sequencing in FEDC 4. There’s so many aspects in FEDC 4. My son’s been in FEDC 4 for the better part of 7 years. Maude says that for some kids it does take longer. This is often where they see a lot of compassion and empathy for their families at A Total Approach, Maude shares, because things aren’t happening in the time frame parents expect because of how society tells parents that their child is delayed. It’s so important to support parents through these phases where it looks like their child isn’t developing.
There are many nuances to FEDC 4, but in it, an individual is working on praxis, language, visualization, and ideation, so it’s very important for clinicians to let parents know and help them understand that ‘FEDC 4’ is only the category of a wide range of things to be explored. Autistic exploration often lands up in single files, Maude believes, so it can take awhile for the single files (of praxis, language, etc.) to come together, then be translated into play.
It’s not that the child is not moving forward, Maude reassures us. It’s simply that FEDC 4 is a complex capacity so they have to focus on the different components of the capacity. It can feel like the child is plateauing and it can feel like you need to change therapists, but Relationship is so important, and we don’t want to send the message that relationships are not permanent and not to be trusted.
If you feel like a child is staying at the same place for too long, remember that if the child has a good relationship with a therapist, this is such an important piece. Maude talked about how going slower is how we move faster in a previous podcast. Maude says that without FEDC 4, it’s impossible to get to FEDC 5.
What FEDC 4 Imaginary Play Looks Like
I explained how my son’s play went from enacting a PJ Masks scene with PJ Masks characters years ago to now watching Curious George and enacting the scenes from it with Super Mario characters, or using a LEGO cart to be an ambulance in representational play, which is more complex than before. We can’t force our kids’ development. It comes from them when it comes. We can just provide ideal conditions, Maude stresses.
Maude says that the complexity is increasing. If your child takes the characters they like–whatever has foundation for them and their curiosity and what is comfortable to them–and if these characters start completing different scenes from what he has seen before–creating a novel storyline or creating a calamity that they have to solve, which is completely unique to that story–this is when FEDC 5 is emerging.
Maude continues that this is why Floortimers say to expand the play, along with promoting circles of communication. When you start seeing scenes like my son is doing–crossing over from one character series to another–then you can say, “I’m so scared…what am I going to do?” Once he starts putting his own story line with those characters with a production of a beginning, middle, and end, he’s emerging into FEDC 5.
When he is facing me with an emotion, he has structure–visualization and imagination in order to say, “It’s going to be ok!” Then you can reply, “I don’t know… I’m really scared“. Then he can say, “Come under this pillow!“, figuring out that when I’m scared, I can feel safe under the pillow and that safety will feel better. I get safety and now I get my play partner’s part, and now we’re negotiating both.
Bringing Reality into the Play
I found rainbow colours of painter’s tape and made a spider web across the banister at home for my son. My son grabbed his plastic Super Mario figures and stuck them to the tape. Then, I put a piece of tape joining two of the pieces of tape, from the higher one to the lower one, and my son made one of the characters slide down it yelling, “Whoo hoo!” I thought this was a bit more novel than other things he’s done in play.
I shared with Maude, though, that I haven’t seen him enact scenes from his typical day with parents, with friends, or at school. There could be a variety of reasons for that, Maude responded. She’d encourage him to take his characters to school and also add a piece of reality into his current play. If you went to the museum, for example, enact going to the museum with his characters. Bring in those pieces of reality so it becomes part of the fantasy play, she urged.
Maude wouldn’t push the fantasy in the play, she said, because that comes later. It’s not really FEDC 4. Instead, bring reality into the fantasy play so there’s more material of things your child has to make sense of, that they have to generalize from one thing to another. This brings the visualization to life, which is really important, she asserts. This ‘practice’ is essential for solidifying the foundation for the next capacity.
There’s still work in FEDC 4 with my son, Maude explained, because in FEDC 5 we have to start making emotional sense of things, which is the integration that FEDC 4 creates for us to build the material where we can land emotions and thoughts on later in FEDC 5.
What is FEDC 5?
The fifth Functional Emotional Developmental Capacity (FEDC 5) is called Using Symbols and Creating Emotional Ideas (earliest emergence 18 to 48 months). We’ve already said that the emotional piece must land on the structure of FEDC 4. This emotional piece is a crucial place where the sense of self comes into a place where one can understand interoceptively, cognitively, and emotionally what their emotions feel like, what they’re going to label them, and how they’re going to be dealing with them, Maude explains.
You can label emotions cognitively in FEDC 4, Maude says, but if my Mom is playing sad in FEDC 4, I want to go make my Mom smile by putting my fingers on her mouth to make her smile. At the end of FEDC 4 where they have cognitive empathy, they can start to handle you being sad, Maude continues. You can say, “I’m so sad. My doggy is sick.” They might kiss you to start, but when they are doing that real empathy, they can suggest putting a blanket over the doggy so he’ll feel all better. Then you can problem solve how to put the blanket on the dog because you’re out on the street, for instance.
The more you’re sad, the child tries to figure out how they can help your sadness and solve it in FEDC 5. Deeper in FEDC 5, they’ll come sit beside you and just hold your hand saying something like, “I know you’re sad” like when Sadness from the movie Inside Out put her hand on BingBong‘s knee when he lost his van. Empathy shines thorugh. Empathy feeds that sense of self in who we are, and our productivity and capability of actually dealing with someone’s emotion and leaving it separate from our own emotion is the depth and breadth of FEDC 5, Maude explains.
What about Empathy?
A lot of autistics say they have more empathy than others because they feel so much. Some autistic kids seem to be more overwhelmed by emotion than neurotypical kids. If you see sad things on TV, neurotypical people tend to think it’s cognitively sad, but it’s not the same as their own family. However, many autistics feel as affected as if it were their own family. What I hear Maude saying is that it’s not that the empathy isn’t there. It’s that there’s so much feeling that they don’t know what to do with it until they get to FEDC 5, whether you’re neurotypical or autistic.
Maude points out that in FEDC 1 we feel emotion, but you’re not able to label it, understand it, or be anywhere close to dealing with it. You’re just feeling dysregulated by it. You’re a victim of the environment. So it’s not that emotions aren’t there from the get-go. Empathy is built from the minute you are born when your mother ‘coos’ with you, Maude asserts. It used to be said that there were no mirror neurons in autism, but this is not true, however, they might be underdeveloped or underutilized, Maude says.
This is why we love to sit across from the child in Floortime, which makes the mirror neurons four times more active, Maude says. Iacoboni’s research on empathy says imitation is the place where empathy starts in our brain. Maude continues that you build the type of parent you’re going to be from the way that you were parented. It’s not what you say with kids, it’s what you do. As they pick up your response and empathy, that’s where empathy will land.
It is not true that autistics don’t have empathy, Maude stresses. Empathy, as it lands on interoception in the body, she says, can overwhelm the interoceptive system, and can lead us to shut down the interoceptive system if we don’t know what to do with it. This can then also lead to other problems, Maude explains. There’s a lot of adults who still struggle in FEDC 4 when you’re under stress, I pointed out, but we’re talking about the development of these capacities.
The Development of Self
Maude says that there’s a line that walks through the Functional Emotional Developmental Capacities (FEDCs) and that’s the personality. We’re born with different temperaments. Maude gravitates toward the nature-nurture theories that nurture shapes the personality. As we go through these capacities, a little ego is developing and becoming autonomous. Feeling that sense of “I can” is developing through these capacities.
All of us need to know that the moment you’re an entity as a baby, you have the full capacity in your nervous system to have the things in place you need to have, Maude asserts. Your nervous system is hard-wired to develop. You don’t tell a baby when to crawl. They naturally do that because we are pushed towards development. But when one part of development isn’t happening the way it needs to, then we turn into avoidance, she explains. We avoid the things that make me feel out of control, which is what causes the delay.
The experiences you need to become praxis-oriented, to build vocabulary for language, to put your language to what you’re doing, and applying yourself to it in play gets missing, so you don’t build the constructs that you need to. A model like the DIR model is one model of explaining how these things have to follow on each other, but it doesn’t mean the availability isn’t there from the beginning, Maude insists.
From the moment you see your mother’s eyes or hear her voice, you are feeling something, but being able to capitalize, understand, and organize those feelings comes with time, support, and containment, Maude continues. Any developmental model provides the timeline, but it’s not about one step at a time. In the podcast conversation, Maude says, her and I are doing the first six FEDCs at once, thinking of what we’ll say next to help others understand.
In DIR the ‘I’ is for Individual differences, and we like to focus on the individual profile over a diagnosis because everyone is unique in their development based on their unique profile. The whole emotional piece that is such a big piece in this developmental model is what we focus on, Maude says.
Final Thoughts
The fifth Functional Emotional Developmental Capacityis where we can work against polarized thinking, Maude says. If an individual can understand the range of emotion in themself and where it lands, and understand that another goes through something too–that is, if I can get you and you can get me–then we actually have a place where we can have a debate.
It’s an organizational structure on which I can trust you and where you’re coming from, and you can respect me and where I’m coming from, and the fact that we may differ in opinion doesn’t make it wrong or right. That ultimate respect lies in this model. It brings about so much healing that our world needs right now, Maude reflects. FEDC 5 provides the room in which me and you can be in a space that corresponds and keeps us co-regulating each other so we can both grow, Maude concludes.
This week’s PRACTICE TIP:This week let’s practice meeting our child where they’re at, and fully working on making that capacity robust.
For example: Are they having robust circles of communication? If not, go back to watch this podcast from last month. If they are, let’s start enacting their favourite scenes with their favourite characters or stuffed animals. If they are fully doing representational play, start playing the role of one of the characters and have those emotions like Maude talked about. Let’s be a part of the drama they create.
I thank Maude for taking the time to record this podcast and I hope that you found it as helpful as I did in really getting a deeper understanding of FEDCs 4 and 5! Please consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Developing Through FEDC 4 into FEDC 5 appeared first on Affect Autism: We chose play, joy every day.
Photo by Mikhail Nilov**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Topic
The topic of this episode is the fourth Functional Emotional Developmental Capacity (FEDC 4) of the Developmental, Individual differences, and Relationship (DIR) Model based on the presentation our guests in March at the New York City DIR/Floortime conference called, The Spectrum of FEDC 4.
This Week’s Guests
Katie Shepherd is a DIR Expert and Training Leader with the International Council on Development and Learning (ICDL) and a Speech-Language Pathologist in Chapel Hill, North Carolina. Sanette Louwrens is also a DIR Expert and Training Leader with ICDL and owner of Sensorium Therapy Inc., a DIR Occupational Therapy practice in Redding, California. Sanette completed the Napa/UC Davis Infant Parent Mental Health fellowship in 2022. Reflective practice development in DIR is one of her passions.
FEDC 4: Complex Communication and Shared Problem Solvingby Affect Autism
https://affectautism.com/wp-content/uploads/2024/07/2024-07-19.mp3Bonus Insights
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!The Spectrum of FEDC 4
I asked what made Sanette and Katie choose this topic to present at the DIR conference in March. Sanette says that Katie and her taught DIR 201- The DIRFloortime Basic Certificate Course together, and had such a wonderful synchrony, that they wanted to present together. They chose FEDC 4 because it is so complex. It’s called Complex Communication and Shared Problem Solving. It is such a shift in the child’s affective development and the development of ‘self’, Sanette says. It’s an incredibly foundational shift.
They called their presentation The Spectrum of FEDC 4 because you have an imagery of a white light lighting a prism and then radiating the colours of the rainbow. That is how FEDC 4 is. Everything is stepping up. The regulation is stepping up, the communication is getting more complex, and there’s more nuances. They were trying to capture this complexity in the title. They want this to be a resource for people so they can dig in and have more wonderings about FEDC 4.
You have an imagery of a white light lighting a prism and then radiating the colours of the rainbow. That is how FEDC 4 is.
DIR/Floortime Occupational Therapist Sanette LouwrensWhen Katie and Sanette teach DIR 201, it covers the first four Functional Emotional Developmental Capacities (FEDC 1 through 4), and then in the Certificate of Proficiency course, DIR 202, they cover FEDC 4 through 6, so FEDC 4 is visited twice. Then, as they did their literature research and also looked at what Drs. Greenspan and Wieder have written about FEDC 4, Sanette says that her and Katie both expressed awe and humility in the breadth and depth of this fourth capacity and how beautiful this DIR model is at meeting every child and family.
Diving in to the Fourth Capacity
I referred listeners to our last podcast on the third FEDC with Naomi Wong and Andrea Snyder and Katie said that she attended their presentation at the DIR conference right before presenting hers and Sanette’s, which really helped because you can’t really think about one capacity without considering the earlier ones. Katie added that in the DIR model, she doesn’t think Dr. Greenspan intended on any of us to only work on only one capacity at a time. We’re always thinking about all of them.
Complex Communication As an individual is moving from the third to the fourth capacity, their back-and-forth interactions are becoming longer and more complex. These long chains–affectively charged and continuous–of circles of communication create a flow of communication. As the interaction progresses, these circles of communication become more complex. It also involves the use of many communicative signals such as facial expressions, gestures, all forms of body language, vocalizations, and/or words to communicate increasingly more complex ideas.
An Interactive Experience As a DIR 201 instructor, Katie values and celebrates the preverbal experience. The non speaking communication is so important to promote and encourage communication, she emphasizes. Individuals express more complex ideas gesturally with vocalizations or sound effects as well. We also want to highlight how this is interactive, Katie says. You’re interactively solving problems with a sense of ‘we’ in the fourth capacity. We think of the development of these interactions in this capacity.
Maintaining Regulation Another component is that we need to maintain regulation while maintaining a broader range of emotions, which is something we really want to focus on, for longer periods of time, Katie continues. Through all of these rich interactions, we establish a sense of self and this understanding of a ‘you’ and a ‘me’. An individual can begin to advocate for themselves and say ‘no’ when you have a sense of self, Katie shares.
Motor Planning We want to support an individual’s pursuit to lead reciprocal interactions and sequence and execute action plans, Katie adds. This is where the recognition of patterns comes in. All of this is interactive with a communication partner, even under healthy levels of stress, Katie adds. I shared that in ICDL’s parent support meetings, parents are learning the FEDCs and it took me years to even remember what they are, even having read about them numerous times.
Continuous Flow I pointed out that the developmental capacities are like a spiral. They are not stages or steps where you master one and move on to the next one. We’re working on this all the time. I highlighted Katie’s point about the flow of communication being continuous. This is different than start-stop interactions where you may ask a question that your child answers, then ask another question, etc. Or your child asks you a question or sends communication to you, and you answer, then you change the topic.
Broader Range of Emotions I also wanted to highlight Katie’s mention of maintaining regulation through a broad range of emotions. In my Floortime series, ‘We chose play‘, you can see my son starting to demonstrate this when his father presents a symbolic idea of the train putting out the fire which my son protests, but he stays in the interaction and his distress lessens because he is so motivated to continue playing trains with Dad.
Co-Regulation I didn’t realize at the time all the developmental capacities he was showing, even though he still had constrictions in his capacities. When he was younger than that, he would have got up and walked away, but he stayed in the interaction. I pointed out what Dr. Stanley Greenspan would say about reaching the point where one can co-regulate with another person using those affective signals versus having ‘catastrophic emotional reactions’. Getting to the point where your child feels safe enough so they can co-regulate with you through those dysregulating moments is a part of this fourth capacity.
The Genuine Relationship
Katie pointed out that the Relationship is so important in my example, and my son was motivated to continue being in that relationship with his Dad. She also wondered about the affective signalling Dad was providing in that interaction. I replied that Dad’s affect was pretty neutral and he was more focused on his agenda, as he was newer to Floortime then, but acknowledged Katie’s point that the child is affected by the parent’s affect and how I would have been much more reactive to my son being upset than his father was; he was always much more calm and chill.
I shared how important it is for parents to be able to find their genuine affect with their child because you have to be comfortable interacting with your child versus following how someone else is doing Floortime. Katie also highlighted that I said my son isn’t having catastrophic reactions much as he did when he was much younger. It’s because of the rich emotional interactions and emotional signalling, which helps a child learn to tame their own emotions.
Shared Problem Solving
Sanette added that in the train example, my son could stay in the interaction through distress. The individual’s regulation has more stability in the fourth capacity, whereas in the earlier capacities (FEDC 1 to 3) you have to work a lot harder at co-regulation, she explains. There was a ‘problem’ or ‘challenge’ created that had meaning to the child, so that was affect-mediated problem solving. Problem solving in FEDC 4 isn’t just having a problem in the play, Sanette continues. It’s about having meaning to the child, and in that meaning the child will negotiate and navigate through affect.
It’s interesting to reflect on how the circles of communication in the third capacity help the child realize they have an impact and influence through their initiation and gestures. It helps them figure out cause-and-effect, whereas in the fourth capacity, they realize the world is their oyster. This concept of signalling, negotiating, and navigating makes them realize they can resource the other in the problem, and the problem has meaning to the individual.
When you have the flow with interaction, you don’t have to do too much to regulate and bring a small challenge, Sanette continues. In order for this to be in the fourth capacity, we want to see that it’s affect-mediated and meaningful to the child, and the child resources you to solve the problem with them through their communication system, Sanette stresses again.
Many times when we do playful obstruction, Sanette says that we’ll use ‘magical’ problem solving: “Whoops! The fire is out!” or when playing with cars, you’ll say, “Oops! My car stopped!” The child might come and pretend to put gas in the car and ‘magically’ solve the problem instead of seeing the sequence of needing to call a tow truck so you can figure out what happened to the car. When you do playful obstruction, make sure the challenge has meaning for the child, Sanette stresses.
I shared that Dr. Gil Tippy really stressed with me in the past that any so-called ‘intervention’ can bring a child to FEDC 3 but DIR/Floortime stands out because getting a child to those higher capacities is where we see thinking emerge. I added that this is where the praxis piece comes in, too, because if you aren’t yet capable of planning, initiating, and executing your ideas, it’s a struggle in this fourth capacity to problem solve with someone.
Katie points out that’s it’s so important to realize that problem solving is so much more than verbal negotiation. There are so many ways to communicate with your body language what to do with your car during playful obstruction, for instance. You are seeing if the child can make sense of the vocal and social action patterns of the play partner’s movements of looking, showing curiosity, and wondering together, without words, really leaning your body in there and make meaning of whatever the solution is going to be.
Promoting FEDC 4
I stated that in FEDC 3 we start by initiating circles of communication then eventually the child begins to initiate. In FEDC 4, we might suggest a solution first, such as going to get gas for the car that stopped, but I shared that perhaps the child will just repeat, “Go get gas” every time after that, without thinking of another idea. Sanette responds that we want to bring the thinking to meet the child’s ideation where it’s at. We want to support the child’s ideas.
One of the big components of FEDC 4, Sanette repeats, is that non verbal, gestural communication. That system is so foundational across the lifespan. It’s the glance of your eye, the way you place your head, or where your body is. It’s a mind-body system that is foundational on your interoceptive ability. The interoceptive system makes sense of what’s coming in from the outside. Sanette shares that her granddaughter had the raise of an eyebrow as a baby that had so much communication contained in it. As you develop this, you bring so much more of yourself into the play.
Let’s say that in play, Sanette explains, you make the noise of a car running out of gas (e.g., “putt, putt, putt…“) and gasp, this is way more inviting than asking, “What do I do now?” When you use these non verbal gestures in this way, you are giving the child feedback. The child has to use their eyes and ears to take your gestural system in, in a multi-system way. It’s a feedback loop that modulates and regulates the child. It provides the regulation to support ideation, Sanette explains.
An example of FEDC 4 in playKatie shared an example of playing with a little girl who loved to play firefighters. They were putting out fires together. For one of the fires, they were too late, and the house was full of soot. They were trying to get the soot out. The girl was doing a lot of imitation of Katie. Katie had a sponge and ‘by accident’ got a hole in her sponge. The girl was magically fixing it. Then, the girl had a hole in hers. There was a lot of back-and-forth in capacity 3.
Next, Katie was standing, and the girl asked her to come over to her, but Katie asked if the floor was stable because she was scared the floor was going to fall. The girl said that it was fine, but Katie hesitated and showed on her face that she was afraid, without words. The girl lifted up her toe to test the floor without saying anything, and together they were figuring out this problem. Katie and her together put their toes down hesitantly to see if the floor was stable.
There was social referencing as they looked at each other, there was affective signal exchange with their facial expressions, and they were sharing the emotion of being nervous. Then, they tried it together and there was a sense of relief that the floor didn’t collapse. That moment of shared, social problem solving was done with their body language, Katie explains. It’s just about figuring out what to do next. It doesn’t have to be a grand, elaborate problem to solve.
One mistake I made early on was creating too many problems too quickly, instead of staying in the moment and using that affective signalling. Katie adds that it’s also important to support the child’s pursuit to lead. They will tell us what to do next. Follow their lead. I added to slow down as well. Slow down, then slow down more, then when you think you can’t go any slower, slow down ten times more than that. When you watch videos of yourself, you realize you didn’t wait at all for the child to jump in with an idea.
Sanette added that as Katie was recalling that experience, in her FEDC 4 example above, she was glowing. To bring in reflection as a source of information, we can think about the warmth, pleasure, and joy in the second FEDC. There’s a quality, too, of the collaboration as the ‘I’ and ‘me’ become a ‘we’. The quality of engagement and collaboration of doing something together is something you can sense, which is just beautiful.
Katie adds that this goes to the ‘R’: the relationship. Katie adores this little girl and has a wonderful relationship with her and her family. There’s a trust and co-regulation because of the relationship. The pacing and engagement also supported the interaction. It had so much to do with the relationship, though, Katie stresses!
Those Individual Differences
I highlighted paying attention to the child’s Individual differences. I shared an insight that my son’s speech-language pathologist had about how, despite him not having seemed to be a Gestalt language processor, she noticed that when she altered the way in which she spoke with him–the way she would with a Gestalt language processor–she could see him move up in his developmental capacities.
She was supporting him by taking into account this individual difference. Katie agrees that communication is such an important individual difference, and perhaps we are noticing that my son might be a bit of both an analytical and a Gestalt language processor, which many people are. Sanette continues on another individual difference–that of ideation. She said that we want to figure out how to support ideation so the idea can come into the individual’s body and they can express it in the sequencing and timing, then watching how it’s getting executed, and the feedback it gives to the body.
In thinking about how we support this in the interaction through the relationship, Sanette reflects on Katie’s example. The child had a dyspraxic profile, and the way Katie positioned her body, the way they were referencing one another, and the minimal language and use of affect, it gave the child feedback and scaffolded the child’s interaction. It goes back to how important it is to hone this skill as a Floortime play partner, Sanette says, when you are supporting the fourth capacity.
Even just the breath is a gestural signal, Sanette continues. You’re signalling to the child in an interoceptive, affective way, embodying emotion with that non verbal gestural system. It enables the child to truly feel the emotion, and helps the transition from emotion, into ideation, into symbol formation into FEDC 5, which is what we want. It’s the feedback they get through the eyes and ears–a multi-system feedback–in that continuous flow that is paced. Yes, you’re in the moment, but you’re also in an analytical place thinking about how you do all of this, Sanette insists.
Limit Setting
Limit-setting exampleA huge topic in this fourth capacity is limit setting. Katie gave an example of a little boy who could climb across the monkey bars, but was not allowed to go up the ladder in a Floortime session. They used humour and affect to communicate the limit setting. They would sing, “No climbing on the ladder!” The child would test the limits to see what they would do.
Through the interaction that they stretched out about not climbing on the ladder, the child loved the affective exchanges they were having and understood the limit, while being silly and hinting to test it. They’d say, “I know you want to go on that ladder!” and if they used a firmer tone, the child understood and followed the limit.
Using the humour and through the relationship and affective cues, the child made a game of it, so they gave the child time and space and stretched it out as much as they could to get that continuous flow, and made meaning of what was happening. Sanette comments that there’s regulation that has a stable quality so the child could be more flexible in his ideation and engagement, which allowed a reciprocal interaction that had flow.
Sanette added that the affect was what the child needed to process and understand the limit. The child was developing and fortifying his sense of self by testing the limits, as kids do in FEDC 3 and 4. You have to understand that someone has an idea that’s different than yours. You have to have the capacity to receive and hold the space that someone has ideas different than theirs, but instead of it being a threat, it becomes a resource. The child was working on this in a very engaging, multi-system, supportive way.
I asked what to do when the child makes a repetitive game of testing those limits to get that reaction out of the parent that is so gratifying–the emotion-seeking–such as dropping things from the top of the stairs that they’re not supposed to do, to see what you do. They might be doing that cause-and-effect ‘object’ play that comes after ‘sensory’ play.
Once it becomes a pattern, our kids will often stick with the new ‘game’ or pattern that then is very difficult for the parents if they are more mischievous or dangerous, and in school, might be disruptive. Sanette says that they are many aspects to limit-setting. There are different qualities and needs to limit-setting and there’s definitely a requirement to set limits when there’s danger and risks, for instance. We want to be able to set safe limits.
As we are putting down our limits, we don’t always have the time to do playfulness around the limit, so we should set aside time to do this so children explore when an adult says ‘no’ and understand what it feels like. It’s important that they experience emotions in their body in a shared environment. But hearing ‘no’ puts them in a negative range of emotions. They might get frustrated and angry, which is so hard.
You need to play through how we are ‘together’ during these negative emotions. Sanette also adds that DIR is a developmental model. Limit setting is a threat for some children, depending on your developmental capacities, she explains. When you are threatened, you become dysregulated and it’s a matter of survival in terms of a physiological response.
There is a place for limit setting, but Sanette says let’s look at the shared world and look at what the interaction looks like. Sanette is saying that we should bring it into playful setting where we can act these limits out so the individual gets practice with them, when we aren’t rushed and have time. Katie adds to also connect before redirecting. ‘Connect before you correct’.
In play, when exploring a broad range of emotions, sometimes mischief and aggression come out, Katie adds. The more comfortable we, as care providers can feel playing with those emotions, the better children will understand the broad range of emotions and the limits we set.
In Summary
Besides strengthening the third capacity, which is always the answer, Katie says to create extra steps in your pretend play. Be animated, and use your affect through your facial expressions, gestures, and vocalizations. Deepen the plot rather than entertain the child, like it says in The Child with Special Needs. Stretch out those gestural exchanges, she encourages.
Sanette adds that when you’re working on problem solving, sequencing is involved, so think about how you can scaffold and support the child, looking at breaking down the solution into parts to figure out what part you can do so the child can do the next step. Use a variety of gestures because that is the feedback system for the child. Pair your gestures with your vocalizations and actions, and adding vocalizations and gestures to the child’s actions to strengthen the feedback loop.
We also want to be aware of counterbalancing the child’s regulation, Sanette adds. If the individual is more agitated, we’re more soothing. If they’re lethargic, we’re more energizing. If they’re impulsive, we’re more containing for them. If they’re fragmented–especially if the problem becomes dysregulating–think about how to scaffold and support their organization. That counter response is a way to build their range of emotion, Sanette explains.
This week’s PRACTICE TIP:This week let’s practice focus on what Sanette stressed so much: strengthening the feedback loop to our child through our gestural, affective signalling.
For example: Position your body close to the child in their range of vision and at their eye level, use facial expressions, vocal intonations and gestures to indicate that you are eager to be a part of the interaction, and hold that space where they see you are waiting for them to initiate.
This podcast was long overdue, and I want to thank Sanette and Katie for taking the time to cover this vast fourth capacity with us! I hope you found it as helpful and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post FEDC 4: Complex Communication and Shared Problem Solving appeared first on Affect Autism: We chose play, joy every day.
Photo by Anna Shvets**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Topic
This episode we are discussing intentionality in the third Functional Emotional Developmental Capacity (FEDC 3), which is Intentionality and Two-Way Communication in the Developmental, Individual differences, and Relationship (DIR) Model, and moving from FEDC 3 into FEDC 4, Complex Communication and Shared Problem Solving. Our guests presented on Intentionality and FEDC 3 at the ICDL DIR Conference in March and you can watch that presentation here as an introduction to this podcast episode.
This Week’s Guests
I have two first-time guests today. Andrea Snyder is an Occupational Therapist and DIR Expert and Training Leader in Colorado Springs who sees clients in the home setting and teaches certificate courses for the International Council on Development and Learning. Naomi Wong is a Speech-Language Pathologist and DIR Expert and Training Leader in Singapore who owns a clinic called Speech Therapy Adventures helping parents and children navigate their developmental adventure together.
Nurturing Intentionality as a Bridge to FEDC 4by Affect Autism
https://affectautism.com/wp-content/uploads/2024/07/2024-07-05.mp3Bonus Insights
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!The Early Social-Emotional Capacities
To begin, I asked Naomi to describe the first three Functional Emotional Developmental Capacities in the DIR Model, even starting with what Colette Ryan called ‘FEDC 0’ last episode, or that ‘felt’ sense of safety. Naomi shared that in the first FEDC, Self-Regulation and Interest in the World, we transit from a sensory realm into an emotional realm and experience sensory integration. If you can integrate your senses well, she explains, you then have the emotional availability to attend to someone and communicate and interact with them.
In the 2nd FEDC, Engaging and Relating, we think of the ‘gleam in the eye’, or the capacity to have a simple back-and-forth circle of communication with someone. Picture a baby who coos at their caregiver, the caregiver smiles, then the baby smiles back. These first two capacities after that sense of ‘safety’ are about feeling regulated and ok in your body so you can attend to others in a social sense, Naomi explains.
I complimented Naomi on her eloquent description of FEDC 1 and she said that she started using this definition because when she would refer clients to Occupational Therapy, parents would ask why their child needed it? All they wanted to work on was the communication bit. Once Naomi explains it, they are happy to go for the sensory integration component of their child’s program.
The third capacity is about having that idea to want to communicate. Naomi and Andrea themed their New York City ICDL DIR conference presentation, ‘Intentionality’ because they wanted to think about the child having to take the initiative to communicate. To do this, you have to give the child a purpose, because having a purpose and having something to share is the very first step to meaningful communication, Naomi explains. So, if you want intentionality to come on board, you want to ‘woo’ the child to have something to really want to communicate with us.
Mismatched Communication-Action-Affect
Sometimes the children we work with have mismatched words, gestures, and affect. Naomi shares an example of a client who would jump on the sofa at her clinic saying, “You cannot jump after you eat“, but he would keep jumping. That is what his parents have been saying to him, and he repeats that script whenever he jumps on the couch. Conversely, Naomi continues, he was then taking a transparent bottle of Naomi’s, shaking it intently and staring at it, fascinated by it. He wanted to get the beads out of it. He said, “This is not a real bottle. It’s a fake bottle.“
If you compare both sentences, the shorter sentence, “This is a fake bottle“, it makes a lot more sense, with intentionality, and conveys a lot more than the longer sentence about jumping on the couch, Naomi explains. There are also examples of mismatched gestures where a child might be pointing to something, but their eyes are looking at something else. You have to watch their eyes to see where their intentionality is.
Sometimes parents get really frustrated because they are keen to listen to the words, but not read the body language. In Floortime, we used to talk about W-A-A (Words, Action, Affect) which we now refer to as Communication-Action-Affect where we can watch how they communicate, whether it be with an AAC device, with words, or with gestures and affect.
I highlighted what Naomi said about how parents can miss cues children send, such as their eyes looking in a different direction. I gave the example of my son playing Monopoly with Mario characters as the game pieces. He loves to change his character between each turn, so as he begins counting spaces to move his character after his dice roll, he counts corresponding to the spaces for a few spaces, and then miscounts as he moves his character forward.
Another player noticed and pointed out to me that his eyes wander to the pile of characters when he loses his counting correspondence, so I now alert him to watch where he’s moving his character, or to start over. Some parents are better at picking up their child’s cues than others. Naomi says that it is natural for us to tune in to what is verbal, and not look and listen to the body language. Most of our communication is non verbal rather than verbal. We are not cueing into the non verbal language sometimes.
Nurturing Intentionality
Andrea highlighted that my example speaks to my son’s intentionality when he is so excited to change his Monopoly character when his turn ends. He’s going through the actions, but his true intrinsic intentionality is what he’s focusing on with his eyes and body–not his motor actions that he’s passively going through in order to get to what it is that he’s intentionally interested in interacting with. I said that his intentionality has been strong in him for years; it’s the sustained back-and-forth that is still challenging to maintain.
I shared how in my Floortime documentary series ‘We chose play‘, I talked about how when my son was much younger, it didn’t seem like there was intentionality, which can be hard for parents. You’re trying to get that engagement. You might have to initiate the circles for the child to respond before the child starts initiating. Getting this going is really strengthened, Naomi says, when that engagement is more robust. As Dr. Kathy Platzman has said, when you work really hard on FEDC 1, you get FEDC 2 for free. When you work really hard on FEDC 2, you eventually get FEDC 3 for free, and so on.
The Transition into FEDC 4
When our children are entering the fourth capacity of Complex Communication and Shared Problem Solving, we begin to see representational play come out, Andrea says. An individual starts playing different themes that they experience on a day-to-day basis: of going to school, of caregivers going to work, or of caregivers making dinner. One of the big shifts we see moving from FEDC 3 to 4, she continues, is that emotional quality.
This is where we really see emotions come into their interactions–different feelings and experiences–contrasted from the third capacity where we’re getting that robust back-and-forth together and are emotionally connected, but are not emotionally expressing our internal feelings like when we move into the fourth capacity.
Naomi says that in their presentation on Intentionality at the ICDL conference in March, her and Andrea spoke a lot to taking into account the Individual differences of the child. In Naomi’s example of the child with the bottle, the child loves music. Anytime there’s a musical instrument and they’re singing, you see the gleam in his eye, so Naomi uses that through the first two capacities and then, using support, moves in to the third capacity.
This support helps the child navigate into the third capacity and stay there, Naomi explains. It’s about following the child’s interests, whereas in FEDC 4, you might not need as much support to keep the circles of communication going, and you might not need to follow their interests as much as you need to in FEDC 3.
Following the Child’s Lead
Considering the individual’s differences includes honing in on what is intrinsically motivating to the child, so practitioners should have materials out that support their play preferences, their sensory preferences, and their motor preferences, Andrea explains. By supporting these, it allows the child to have the intrinsic freedom to fully express with us what it is that they want to play with and how they want to play with it.
With Naomi’s client, Andrea continues, Naomi will have toys or items to support that music desire/motivator, since she knows he loves music, and through that, it allows him that intrinsic freedom to open up that intentionality of interaction and communication with Naomi. So let’s talk about how to do this.
I shared that when we read the descriptions of the capacities, it’s describing neurotypical development and what ‘the baby’ does, but parents say, “My kid isn’t a baby. He’s 8.” They don’t know how to interpret it. I want to see that my child is intentionally communicating with me and responding to whatever communication I’m sending back.
So in Naomi’s example, she might hold up the ‘fake’ bottle, for instance, in anticipation, and the child looks. Then, Naomi can make a noise such as “Ahhh!” and the child smiles back. Right there, that’s two circles of communication. When we get more and more of these ‘circles’ and have this robust back-and-forth, with dozens of ideas, you approach the fourth capacity.
Naomi continues that when you are holding up the bottle, she is looking at the quality of the child’s communication, affect, and gestures and if they are intentional. She wants to see that all three align nicely for that communication purpose. As the communication goes back-and-forth, she might drop the bottle and it might roll somewhere else and she can use affect, saying “Whoops! Where did it go?“
When is it Time to Challenge?
In a good Floortime session, Naomi continues, there’s always the engagement, and there’s also a little challenge that creeps in. Will they go look for it? We want to challenge a little to know if the individual is ready to move forward, or if they would lose that interaction because it’s too difficult for them to continue.
I shared that when I visited Jake Greenspan some years ago, he saw all six capacities in my son, but said that the tree trunk (referencing The Learning Tree) was very narrow and we want to work on widening that tree trunk by making the third capacity more robust across situations, environments, and caregivers. This is what we’re talking about.
Andrea said that it is part of the challenge of parents when we really do want to see our children move from capacity 3 to 4. We want to move to that next step, but it’s so important to sit in capacity 3, Andrea stresses. We want it to be robust. It’s so tempting to throw in some playful obstruction when we get a few circles. We want to see that intention with a variety of toys, in a variety of settings, with a variety of people.
It’s hard not to want to jump into capacity four, Andrea continues, but we want to sit and hold capacity 3 for as long as we can which will set up our child for success to move into capacity 4 so they can have that intentionality when there’s a challenge. If they don’t have that robust intentionality yet, the child will just walk away.
You could say, “Uh-oh! Where did the bottle go?” as a little test to see if the child is ready for us to stretch a little bit because it’s a small challenge. We want to start with that super small challenge, Andrea asserts. That’s how we know when our children are ready. When they take our small little shift, they figure out what comes next with us, their play partner.
Stick with a Small Challenge
Naomi stresses that it is a very small shift. In her example, the bottle might roll slowly towards the couch so the child sees it and can track where it has gone. It’s a simple challenge. If they are not ready and their eyes don’t follow the bottle, it is our queue to stay with FEDC 3. Andrea repeats that the small shift still includes the play partner. We want the child to figure out where they bottle went jointly with the caregiver, not on their own.
In DIR, it’s all about the Relationship. We don’t want to lose that relational quality of finding that bottle together. We want to see the child maintaining their intentionality with their play partner in that little shift. It’s about that relational-conversational-interactional quality versus solving a problem by yourself. It’s about doing it all together. It’s a shared experience.
If you make the challenge too big and the child walks away, that behaviour is the clue that the challenge was too hard. I shared that in my Floortime documentary series ‘We chose play‘, I shared a clip of a consultation I did with Dr. Gil Tippy where we watched a clip of my son playing trains with his Dad, but then Dad uses a crane in a symbolic way and our son throws his hands up in the air and leaves the interaction with a scream.
Dr. Tippy asked me why my son left the interaction. I replied that he didn’t like what Dad did. Dr. Tippy said it wasn’t just that; it was also that the play was functionally, emotionally, developmentally too far ahead of where he was at that time for where he was developmentally in that moment. Many times, parents don’t know what to do when the child walks away. They think the child isn’t interested in playing with them.
Sometimes, the child walks away and comes back. My son would do that to regulate and then return to the interaction. And sometimes we challenge too much. In Season 1, Episode 6 of ‘We chose play‘, Colette Ryan is coaching me retrospectively about a 7-year-old Floortime video where my son was 5 years old and I was challenging my child way too much and trying to teach my child.
What stood out for me was Dr. Tippy saying to me once that if you change one little thing, stay with it for three months. In the video with Colette, I stayed with a change for about 3 seconds! Dr. Tippy said 3 months! When you’re teaching and challenging, you’re forgetting about keeping the back-and-forth interaction going.
Holding that Space
Andrea says that we feel stuck in the play as parents, feeling like we’re doing the same thing over and over, and that we should be doing more. But with the DIR Model, Andrea asserts that we’re intrinsically giving our child that freedom to want to continue through these developmental capacities, and our children show us when they’re ready for us to give them that expansion. We’re doing everything we should by following the lead of our child and waiting for their cue that they’re ready.
We might take it too far and challenge too much, and that’s ok because we can always repair the broken interaction, Andrea assures us. When there’s a rupture, we re-initiate that interaction, which sets up our child for future experiences where they might experience a rupture in the classroom, and now they know how to repair it. By returning to that interaction by re-joining and re-following, we are strengthening their intentionality in FEDC 3 and waiting a couple more weeks to try that little shift or challenge again.
I used to find myself in ‘performance’ mode when doing Floortime and I didn’t know how to self-regulate when I was frustrated in the interaction. Waiting in that moment is so important. We want to focus on ‘being’ over ‘doing’. It can be uncomfortable to sit and wait on the child’s cues. It’s a real art, and it’s always changing as our child continues to grow and develop. Naomi says that when we are able to wait with our child and engage them in a relaxed interaction, having that just-right challenge and having fun, without having to push for another goal, this interaction can be very regulating for both the parent and child.
When we talk about co-regulating, Naomi continues, the interaction is rejuvenating for both the parent and child. This is the sense of ‘being’ together. This helps build the relationship and keeps us together over time in our bond and intimacy, which is what we want for parent and child, versus a parent taking on too many hats being a teacher and a therapist, too. Know when is the time to just ‘be’ with your child, and when you are playing and doing Floortime, still ‘be’ the parent in that interaction.
Inserting the Pause
Andrea adds that parents can keep in mind the power of ‘the pause’ to actively be in the interaction while our worlds are moving so quickly. We tend to constantly think about what’s next, but the pause allows our child the opportunity to show us what’s next because they have that idea, but sometimes they need that extra time from that processing, from a motor planning, or from an initiation standpoint.
Being in that connection with our child gives our child so much power to figure out the next opportunity, Andrea adds. They feel that intrinsic, “I got this” versus them needing to respond to what the caregiver gives next. It allows that true active ‘being’ in the interaction. Naomi says that in a course her and Andrea taught, there was a parent who just sighed, breathing out, as a pause, and after that the interaction was so much better.
Dr. Gil Tippy did a video series during Covid called For on the Floor about waiting, and how when we’re rushing, the child ends up thinking there’s a right answer and that there’s a demand on them. They’re eager to please so they don’t think but just respond, so I love what our guests said about taking that pause. We so naturally direct our children all day long and at school they’re always being directed. We want to give them the time together to just sit back and let them show us their ideas.
I gave an example that parents can do with their child on the weekend when there’s no rush to go anywhere. Say that it’s time to get dressed and then wait. See what they do. Then you might say, “shirt?” and wait, or “pants?” and wait. It might take two hours to get dressed. You give subtle hints to see if they take the initiative. When you have a sock see if they know what to do with it. You could even put it on their hand and see if they protest that it doesn’t belong on their hand.
Andrea says it’s so easy for us to say that it’s time to get dressed and disengage. In my example, she said, we are holding the space affectively, being curious and wondering, sending that emotional experience of anticipation with the child. It’s holding the emotional space, which is so powerful. Andrea might affectively say, “What are we going to play today?” and look around the room with anticipation. If they’re stuck, she’ll give them a nudge to see if they come up with the next step.
Slowing Down to Go Faster
She’ll affectively hold that emotional space in excitement and wonder, which motivates the individual to have that space to figure it out. I reiterated how important it is to slow down, and when you think you’re going slow, slow down even more. When you think you can’t go any slower, slow down even more. If you film yourself doing Floortime and watch it back, you can see how quickly we tend to go, leaving our children lost in the interaction.
Naomi said that the paradox is that we are slowing down to speed things up. When we slow down we give our child the chance to make a choice, and to be intentional and initiate. If we are rushing and entertaining them and not giving them that space, we rob them of the time for them to think and figure out and process the next step. I shared how Mike Fields called that being an ‘opportunity thief’. We are robbing them of their third capacity, Naomi says.
This week’s PRACTICE TIP:This week let’s practice sitting in the moment with our child and holding the space for them to initate their ideas with us.
For example: Find an activity your child loves to play, such as blowing bubbles, and just enjoy being with them holding the bubbles, waiting for them to initiate that they want you to blow the next bubble.
I am so grateful for Andrea and Naomi’s podcast this week! I really learned so much about supporting my child at FEDC 3 to strengthen it in order to strengthen FEDC 4. I hope you found it as helpful and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Nurturing Intentionality as a Bridge to FEDC 4 appeared first on Affect Autism: We chose play, joy every day.
Photo by Ketut Subiyanto**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This week our topic is one that is a top request by parents: sleep. I covered it a bit with Dr. Joshua Feder in a previous podcast. Although neither this episode’s guest nor I are sleep experts, we want to come at the topic from a Floortime lens and present some helpful information. My guest is Colette Ryan, an Infant Mental Health Specialist, who is finishing up her PhD with Fielding University on the topic of parent self-efficacy–which we will podcast about in a few months. She is a DIR Expert and Training Leader with The Interdisciplinary Council on Development and Learning and has just accepted a new position starting a new Floortime Reggio Emilia school with a group in Tokyo, Japan!
A DIR Lens on Sleepingby Affect Autism
https://affectautism.com/wp-content/uploads/2024/06/2024-06-21.mp3Bonus Insights
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Which part of sleep are we struggling with?
From ICDL’s parent support meetings that I facilitate, parents come with all of these struggles: My child has difficulty falling asleep, staying asleep, or waking too early. I shared how my son breast fed every 2 hours until he was in the hospital at age 28 months and then continued to nurse until age 5 and a half, because it was the one sure way I could help him stay regulated. Even though it was no longer every 2 hours, I did not get a full night of sleep that entire time, and he didn’t sleep through the night until at least a few years after that. It was exhausting!
Colette added that 50 to 80 percent of autistic individuals have sleep challenges. Is it that the problem is falling asleep? Colette wonders if it’s the person’s sensory system? Is it difficult for that individual’s sensory system to calm down? What about staying asleep? Is it that the person is going through the sleep cycles and waking in the middle of the sleep states? And if an individual has a hard time waking in the morning, at what point in their sleep cycle are they? There are four points in the sleep cycle and we need the restorative sleep for our cognitive and mental health, Colette says.
Colette continues that there are other children who wake up much earlier than we want them to, and this is many children–not just those with a diagnosis. Their body doesn’t allow them to know that if it’s still dark, they should go back to sleep. This logical thinking is a higher capacity of ‘if…then‘. “If my caregivers aren’t awake yet, I shouldn’t get out of bed.” Sense of time is also in the sixth Functional Emotional Developmental Capacity (FEDC), so if you wake up and it’s 4:30AM, that might not mean much to the individual who has not yet mastered this capacity.
The ‘I’ impacts sleep
Individual differences will impact a child’s ability to fall asleep, stay asleep, and wake too early. These include arousal level, and their tactile, proprioception, and/or vestibular systems. Colette says we don’t need to be an Occupational Therapist to see how these factors can affect our child’s sleep. Colette says that some children need to move to stay regulated and by attuning to the child in front of us, we can figure out if our child maybe does need to run and jump or move around in order to be regulated enough to settle in order to go to sleep. Even with sleep, we need to attune to what the child needs. Use aromatherapy–if that’s what your child likes. Dim the lights–if that’s what your child needs.
Screen Time
Screen time needs to stop fairly early before bedtime, too, Colette states, because using screens activates that pleasure centre of the brain, and if you don’t know when to stop, you get over-aroused. I mentioned that I had heard that screentime stimulates the visual system, and that makes you crave more visual input. This is hard for parents because screens are what give us a break to do the dishes or other things. And we know from my podcasts with Occupational Therapist, Maude Le Roux, that the visual and vestibular systems are very much connected.
And screens aren’t going away, Colette says. When is it appropriate to watch the screen? What are we watching on the screen? How long are we watching the screen? And there’s passive and active screen watching, as well. If we can do active watching with our children, we’re still using the relationship piece to comment and use our affect about what we’re watching together.
Sensory considerations, Regulation, and Attachment
Next, we talked about tactile input. Perhaps our child doesn’t like the texture of their pajamas if they’re picky, or a tag is bothering them. Maybe the sheets or blanket don’t feel good against them. Maybe it’s their pillow. I shared that my son always kicked off his blankets and still kicks them around in his sleep today. Colette says it could be the feel of these things, the smell of them, or the type of pillow.
What we know about sleep is that we need restorative sleep, Colette repeats. If we don’t get that, we see more dysregulation the following day. We could have behavioural issues because of not getting that sleep. Dr. Gordon Neufeld talks a lot about the need for a sense of safety and the attachment piece as the pre-eminent need, even before hunger. Colette says that we are wired for it. You could also put Mom or Dad’s shirt next to the child when they sleep so they feel safe when they wake between their sleep cycles to help them fall back asleep.
Colette brought up secondary altriciality and how we come into the world needing someone to take care of us, so those first relationships are about survival and are born with attachment-promoting behaviours. After that, it’s about really liking the feeling of being with the person. We talked about separation anxiety that our children can go through in transitions, and sleep is a transition from being in the comfort of our caregiver to having to regulate ourselves to sleep, which we may not be developmentally ready to do.
How do you perceive the world that you are in when it’s time for sleep and does it feel safe for you?
Colette Ryan, Infant Mental Health SpecialistColette also stresses that we’re talking about a perceived sense of safety rather than physical safety. It could be that the sheets feel funny, so I don’t feel safe, or it’s too dark, or not dark enough, or I can still hear people talking, but can’t process what they’re saying, so I don’t feel safe, and can’t fall asleep by myself. This makes Colette think about Dr. Stephen Porges’ Polyvagal Theory.
Sleeping next to our children
Next, we talked about how many parents of autistic children find themselves needing to sleep with their children in order for the child to fall asleep. This was true for me for many years. I recall hearing a presentation at the DIR conference in New York in 2020 by two staff members of Threshold Community Program in Atlanta when a staff member of the Rebecca School asked about how to help parents who are sleeping next to a child who is already in puberty.
I cautioned parents listening who still sleep with their children to start the process of getting them used to sleeping in their own bed earlier than I did. We need to set firm limits with our children and when we don’t, our children feel unsafe because they don’t know what the limit is. Dr. Neufeld talks about this, and Colette says that Dr. Greenspan has a great radio show about limit-setting (discipline) on ICDL’s website where he stresses that you can’t set a limit on somebody who you don’t have a relationship with.
With sleep, Colette continues, we get into patterns. We get into patterns with everything we do. Sleep is something that both parents and children need, though, so many parents are doing whatever needs to be done in order to get a good night sleep. But for some people it’s not a good sleep because they’re sleeping on the floor or in a twin bed with a ten-year-old. When you set a limit of sleeping in your own bed, it will be difficult for several days, until the individual finally realizes that this is a new pattern of behaviour. The parent will then continue to let the child know that they will provide what the child needs to feel safe.
Setting Limits
I shared that Dr. Gil Tippy gave me a reality check when he told me that if I wanted my son to sleep in his own bed, I should prepare to set the limit when I can plan to go 3-4 days or up to a week with no sleep. You set the limit and you let the child have the tantrum and stay firm that this is the parents’ bed and that is your bed. This brought up the topic of tantrum versus meltdown where I brought the example of my son as a baby crying and escalating to the point of vomiting if I left him in his crib to sleep. I wouldn’t do that to a baby.
Colette points out that as a baby, he wasn’t there yet, developmentally–the ‘D’ in the DIR Model. We would want the child to be developmentally ready to have that limit of staying in their own bed. It is a trial and error because if it is a meltdown with an older child, you would have to know if it’s a tactile issue that is causing it, for instance (or something else). There is no prescription. It really is an individual journey that is trial and error to determine what works best for your unique family circumstances.
I confessed that I just didn’t have the energy and just gave up and would lay next to my son until he fell asleep. But sure enough, exactly what Colette described would happen: he’d fall asleep and I’d be awake. As soon as I fall asleep, he squirms and wakes me out of my sleep cycle. Colette mentioned that not getting a good night’s sleep impacts our self-efficacy as parents. Do we feel successful if we did not get our restorative sleep and are overly tired, finding it hard to regulate and co-regulate?
Interoception
When we think about Individual differences, we also have to think about Interoception Colette wonders if there is a constipation issue? Is there a reflux issue? Laying down to sleep when you have reflux is painful, she says. What about headaches–especially during allergy season? You might need to have a pillow that raises the child’s head higher. Another thing that effects autistic children is seizures. My son has an irregular EEG and is at risk for seizures, which he has had in the past, and there are parents in ICDL’s parent support group have children who have seizures. This is something that is really out of our control as parents, and can make us feel so helpless, I tell Colette.
Colette says that this is another thing we have to attune to. We figure out what our child needs to feel safe which includes their sensory system and that interoception piece. I talked about that interoception piece of feeling when you have to have a bowel movement that can also impact the ability to fall asleep. Colette brought up children who may not feel when their body is tired and requires sleep. If you don’t understand that signal, the idea that you need sleep escapes you.
In the long run, it’s so much benefit for everyone in the family if you take those difficult 4 or 5 days, or weeks, to make that new routine of everyone sleeping in their own bed, so that everyone can get that restorative sleep and be able to function at their best each day. Colette also talked about research that suggests many with an autism diagnosis may not have that memory piece that helps them recall what it feels like when they were tired last night and went to bed. It’s like it’s a novel task each night to go to sleep (Neil et al., 2016; Pellicano & Burr, 2012).
Regulation
Amy Lewis and Heather Spann teach us through Powerfully You about regulation, breath control, and staying regulated within your window of tolerance, Colette says. If you’re not in that window, you might not be able to fall asleep. It made me think of the frantic nature of bedtime and how we use a lot of words and a more firm tone, which can throw our children out of their ideal regulation window. We always say that we want to slow things down with our kids who may struggle with processing things quickly in real time.
I brought up having structure and predictability for bedtime, and setting expectations. A predictable schedule really helps children, then within that structure we can expand and stretch through play. Even if our kids are not yet interoceptively aware of the sense of time, knowing what’s coming up in a schedule supports their regulation. At my house, we have bath be at bedtime, which gives a lot of proprioceptive input, having water around the body, which supports calming down before sleeping.
Following bathtime, we will look at a few books, then do lights out. Proprioception is very organizing, Colette says. By attuning to our kids and helping them organize–using the relationship that creates a routine with the favourite books–it forms a nice pattern for bedtime, she adds. Dr. Gerry Costa talks about needing ‘A.G.I.L.E.’ (Affect Gestures Intonation Latency Engagement). We can use our affect to support the regulation that’s needed to fall asleep. The ‘L’ is for ‘latency’ and Colette says that Dr. Costa says “Less language, longer latency“. That is, let’s use our affect rather than our language. Affect is a great motivator.
Follow the Child’s Lead
This discussion around affect made me think about how we follow the child’s interests. Recently in the ViSPA podcast, with the free, 150-page PDF download, my son and I started doing the ‘Magic buttons’ game Toni Tortora described at bedtime, as well. My son really looks forward to doing this activity. We can figure out what works for our child based on their developmental capacities, their interests, and their individual differences.
In Functional Emotional Developmental Capacity 3 and 4, this is where play is about playing out what a child has seen on a show, for example, Colette explains. Getting into a pattern of acting out a bedtime scene from the show ‘Peppa Pig’, for example, might be an idea that supports a child’s sleep. There’s a lot we can suggest, but think about what they like. What helps them relax?
There’s the Qigong massage that works well to support sleep in some individuals, Colette continues. I shared that Occupational Therapist, Maude Le Roux, talks about giving deep pressure massage when they wake up and when they go to bed and I did that instinctually with my son when he was a baby, and he still enjoys leg and foot massages at bedtime. Colette adds that maybe you do olfactory support before bed. Colette is confident that parents can figure that out.
Nightmares
When our children get symbolic, they may begin to have nightmares. Colette says that a Floortimer is the only person who will cheer when you tell them this, because they are excited that the child is becoming symbolic. Your brain will have storylines in your head when you get into a certain cycle of sleep. When kids wake up and don’t know what to do about it because they had a storyline and are suddenly awake, Colette prefers to talk about it.
Colette suggests asking your child about what was happening in their storyline. Suggest writing it down or drawing it out. It helps them make sense of them. If they had a dream about Marshall and Chase from the show Paw Patrol, Colette suggests playing it out. Even if it’s a negative storyline, she continues, you can say, “Wow, that must have been hard for you. Do you want to tell me about it?” Or, you can simply say, “That is a big feeling!” We address storylines differently depending on where your child is developmentally, and Colette gives an example for FEDC 4, 5, and 6.
Other Concerns or Setbacks
I mentioned how there’s always something that comes along, and a new routine that’s working may not last forever. Things change. Routines change. T. Barry Brazelton’s work on TouchPoints where he talks about things falling apart for a little while and building up resiliency before things come back together again, is helpful, Colette says. I mentioned my podcast about Developmental Growth Spurts that talks about this, as well.
Is the individual having ‘bad’ dreams or do they have bedtime separation fear? Fears from being alone or doing the hard thing of going to sleep by yourself can be overwhelming, Colette says. She sometimes has parents put one of their worn (and unwashed) shirts on the child’s pillow, so as the child is going from sleep state to sleep state, they can sooth with the scent of a caregiver rather than waking up with the fear and alarm of being alone.
Sleep cycles can become disrupted for many reasons, and Colette prefers melatonin to medication if possible. Many times the individual needs to get back into a cycle that fits the family’s needs and the melatonin can support getting into a better cycle, she suggests.
Does the family have a bedtime routine with visuals? It really does not matter if the time changes for when a child goes to bed, Colette says, as long as the routine is the same. Remember that some kids have decreased meaning making for words, so just talking about the routine is not always enough. The visual representation can be really helpful, Colette adds.
Another Sleep PodcastCheck out this sleep podcast from Toronto’s Holland Bloorview Kids Rehabilitation Hospital on autistic teenagers and sleep.
This week’s PRACTICE TIP:This week let’s think about our child’s sleep and wonder about their individual differences and their impact on the child’s sleep.
For example: Does your child have a hard time calming down to fall asleep? Do they have sensory considerations that impact their ability to feel safe in bed?
Thank you to Colette for our candid discussion about DIR considerations around sleep. We hope you found it very enlightening and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post A DIR Lens on Sleeping appeared first on Affect Autism: We chose play, joy every day.
Photo credit: Giant Steps Autism Centre
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
I’m speaking with Marla Cable, the Assistant Director of the Resource and Training Centre at Giant Steps Interdisciplinary Autism Centre in Montreal, Quebec, which houses the developmental approach, individualized private school in the public interest with both English and French instruction, serving students aged 4 to 21 with an autism diagnosis. We heard about the school just over a year ago, but they have now moved into their new facility and Marla is here to tell us about the new Autism Centre.
Giant Steps Interdisciplinary Autism Centreby Affect Autism
https://affectautism.com/wp-content/uploads/2025/06/2024-06-07.mp3The New Location
The new Giant Steps Autism Centre opened in August of 2023 after being a project in the making for over 5 years, Marla shares. It’s located in the Angus area of Montreal, which is in the Rosemont neighborhood–a neighborhood that’s very pro-inclusion, so they were really welcomed with open arms, Marla says and they’re no longer just a school. Giant Steps has been around for about over 40 years, but now in the new Centre they also have a Resource and Training Centre, adult education, and a research pillar as well.
I commented how it must be great to finally be in the new location. Marla says that just having air conditioning has been wonderful. Giant Steps is a private school, but they’re publicly funded by the Minister of Education in Quebec, so there is no tuition fee for parents to send their children to their school, Marla says. If you watch the YouTube video of our podcast, above, you will see the photos of the neighbourhood, with a lot of construction, and the incredible backyard with the splash pad.
Marla says that the difference they see here in the new large outdoor space where students can run around and play is that the kids are occupied. They’re busy doing things now, whereas, in the old building there was a little bit more pacing and just being off in a corner. Now, Marla continues, there’s so much more for them to do and explore, so it’s really lovely to see them outside in the playground.
There’s a garden and different music instruments, including a xylophone, chimes, drums, and all sorts of things they can play with. There’s stairs that lead up to a slide and various climbing structures, swings, and areas where they can go. Marla says that the photos don’t show it, but on the back fence there are sensory walls all along there and a communication board. In addition there’s an outdoor classroom area with a blackboard and logs to sit on.
A Tour of the Centre
Next, Marla showed us one of the 15 classrooms, of which 11 are open right now. They’re opening the 12th next year. The other 3 classrooms are currently used for overflow. There’s a nice reading nook that’s in the wall in the very back, and large windows that bring in natural lighting. The building doesn’t have any fluorescent lighting because it can be often challenging for autistic individuals. All the cabinetry is built-in, so they can reduce a lot of visual stimuli, as well, Marla says.
Next, Marla showed us another example of a classroom from a different angle. Each classroom has a communication device, kind of like a newer version of a PA system, so they can communicate with departments, or floors, or specific people, and each department also has a smart board. Next we saw the art classroom that all the students in the art pillar attend. Then Marla shared the incredible sensory gym, which is the large occupational therapy room, or the gross motor room. They have another room that’s somewhat similar to this, but on a much smaller scale for kids who may get a little bit overwhelmed by the size of the gross motor room.
The school has in-house occupational therapy and speech-language therapy. Marla says that they really want to recognize the whole student, not just academics. They have a computer class, a social skills class, art class, and a gym class. They’re really looking at the whole person and making sure that they’re supporting the individual so that they’re ready to go once they move into adulthood.
Next, we saw a picture of music therapy which is about your relationship to music as there’s a lot of sequencing and patterning in music which leads to the basis of math skills. Music therapy also touches on our emotions and emotional regulation, Marla explains.
Next, Marla shows us the computer lab, not only learning how to use a computer but also about their relationship to technology, including teaching them how to navigate the internet and keep themselves safe. They’re also looking at finding different programming to support students in their IEP goals. They have academic objectives, but they’re also looking at what they’re interested in and how they can explore that through technology to help them blossom in their interest, Marla explains.
Next, on the main floor they have a kitchen that the school uses to learn cooking skills, which helps with learning math skills right with all the fractions and measuring everything, language arts by reading a recipe, and life skills activities as well. The photo Marla shared is of their industrial kitchen, used in the adult pillar for adults over 21 and replicates a kitchen you would see in a restaurant.
The Centre has several partnerships with different restaurants and their hope is that their adults will learn the skill sets and then hopefully go off and do internships, then get jobs in different kitchens, based on the skills that they’ve managed to learn at Giant Steps.
For instance, they have a partnership with the chicken restaurant chain St-Hubert. In the beginning, Marla explains, it was more about the client experience in the restaurant, so through the Resource and Training Centre, they were really helping and supporting them, making sure that the restaurants are welcoming and are inclusive to all individuals, so that they can go to a restaurant. They went through and did an audit of the restaurants and suggested perhaps the music needs to be a little bit lower. Maybe the lighting needs to be a little bit stronger or softer here and have more natural lighting there, etc.
Marla’s team helped them support customers with sensory bags and communication boards so the restaurant can lend them out to people coming to the restaurant. St-Hubert also had sensory-friendly periods on Sundays. They also provided training for the management staff and created online videos they can use for their personnel to learn a little bit more about autism and how they can support autistic individuals in the restaurant. Now they’re working with St-Hubert on hiring autistic individuals. Marla says they have been really on board with all of the steps.
Giant Steps also has a grocery store in the school. Giant Steps did work with the city of Laval who had named themselves the first city in Canada to be inclusive and they’ve been doing a lot of work with the city of Montreal. Giant Steps is very open to working with anyone who wants to become more inclusive. Marla says that in the beginning of her career in the resource centre, it was more about just sensitizing people to autism, but now it’s much more than that; it’s making sure that they are fully inclusive and a lot of organizations are coming forward with this.
Marla shared the photo of the Center’s mini Maxi which would be known in other provinces as Loblaws. Giant Steps has been working with them for a very long time helping autistic adults learn the skill sets to work at the grocery store, whether it’s managing the stocking of the items or working in the back warehouse. Giant Steps actually has a functioning cash register so they can learn how to do the whole cash process right at the Centre.
Across Canada, Loblaws has hired just over 200 autistic individuals, so that’s a huge success. And that’s with regular pay and regular benefits, which is what they’re really pushing organizations to do, because they’re able to do the work.
I commented that I hear Marla saying that she’s noticed this trend from having to really educate people on how to make sure that they’re accepting of autistic people to really embracing inclusion. Marla says that yes, it’s what’s happened.
Next, we see a picture of the new gym facility which is also an event room. In 40 years, Giant Steps has never had a gym, so Marla says that they’re very excited about the gym and that it was kind of the big reason for building the new Centre, and so they can use the gym for events as well. It has all the facilities so that they can hold banquets. They have tables and chairs and there’s a kitchen nearby, so if someone wanted to cater an event, they could do that as well, Marla says.
At the beginning, there were a lot of inaugural events and the premier of Quebec came to do a big celebration of the new Centre. They also had a couple of conferences and some people from the outside have rented out the room for parties and events as well, Marla shares. For the students, they have a gym teacher who is actually able to help and support them in their physical education.
Next, we see the Resource and Training Centre, which we talked about in the first podcast, Marla’s mandate is to help and support organizations, and individual businesses on the outside of Giant Steps. They have a lending library with lots of different books and teaching materials, so anyone from a school to a parent can come and borrow any items or they can come just to search for ideas if they need help and support creating visuals or social stories or anything like that, Marla explains.
The Resource and Training Centre
The Resource and Training Centre also offers workshops, conferences, and trainings and invites the public to attend, or a group can contact Marla directly and ask for a training for their group. They also offer consultations so that if a school that has tried to help support a child and they just need a little bit more help, Marla will go in and observe and help their team find strategies to better help support that child in that environment.
They can do this consultation outside of Quebec as well as they want to spread their knowledge and help in any way they can. The other big part of the Resource and Training Centre is to help different organizations. They have a partnership with the Montreal Canadians NHL (National Hockey League) team in the Bell Centre in Montreal exploring ways in which they can become more inclusive. Marla’s team has helped them create communication boards and sensory bags that they can loan out during games.
They’ve trained all of the heads of the department so they can help their workers understand autism and how they can support autistic individuals who come to the game. As an exchange, the Canadiens hockey team has given them tickets for some of their families to go and watch a game on International Autism Day this year, and they actually provided a skate day where students could go and skate on on the ice with the mascot, Youppi!, so that was fun.
They do a project with the Pierre Elliott Trudeau airport where families go through the whole process of flying to learn about what areas their child or the autistic individual may have a harder time dealing with, so they can be better prepared for the actual travel date. Another great project that they are really proud of is working with the police force and the new police chief for Montreal that is a 5-week immersion program where he requires all of his new recruits to do this program before they actually start working on the streets.
The police recruits go into a whole bunch of different organizations to learn about all sorts of differences about vulnerable people so they can be better skilled and knowledgeable about how to support all sorts of differences in the community. Most of their recruits come and spend a day at Giant Steps to learn about autism. Marla has heard nothing but great things from their recruits. They say they’re really well empowered that they had these tools and strategies that they could use to help and support the person.
Reception to the New Centre
I asked Marla how the reception has been since they opened. It’s a process, Marla says. They have had a lot of media so that many people have learned about who they are, so it’s been very busy. Of course, they have a ways to go and they still need to educate people and they still need to get out there and help with support, Marla says.
Adult Education Pillar
In terms of the adult pillar, Marla says they did have classrooms for the past few years at another center and now they’re at Giant Steps, which is a department that’s growing, so they’re still figuring that out. The adult pillar is through a partnership with the English School Board in Montreal, and it’s really education-based. They teach work skills, but it really is an adult education department and is offered in both French and English, and in Quebec, when you’re an adult, you don’t have to belong to a certain school board to go to the Centre.
The Research Centre
The Research Centre is focused on how to do research that will improve the quality of education and life for the students and is mainly through McGill, called TACC (Transforming Autism Care Consortium) that has many different researchers so they can apply if they are interested in doing research with Giant Steps, and then there’s a team that will read their file and decide if it’s accepted or not. Marla said that they do accept researchers from all the major universities within Montreal so if they want to do research that will help their staff in their ability to help and support the students, they can apply.
Adjustment of the Students
I asked what it was like for the students moving from their old school to the new Centre? Marla said there were lots of social stories, lots of calendars to count down, and their neighbour next door allowed them to put a live camera on their balcony, so they had live feeds where they could actually watch the building as it was being built. Then, in the summertime they had several days where the building was open, so families could actually come and visit with their child just to get a feel for it.
Marla said they also always recommended to the families to drive by, go for a walk in the neighborhood to show the kids that this was going to be their new school. The students really didn’t have any difficulty making the switch over to this new building, Marla said, and after all, it’s tailored for them.
Input from Autistic Self-Advocates
Giant Steps also had input from autistic self-advocates as much as possible to always include the autistic voice in anything they do, including any training, any workshop, or project. Marla has given several tours of the new Centre and several with autistic individuals and they all love it.
Floortime at Giant Steps
Giant Steps school uses a developmental approach, taking input from different approaches, and one of those approaches is DIRFloortime. We were fortunate to have Richard Pare, an educator at the school who has training in Floortime and he shared how Floortime is incorporated at Giant Steps.
Richard is doing a pilot project with one class, picking 5 students and seeing how they can implement Floortime into the school environment. He does one-on-one sessions for 45-minute periods once each week with each student, working with the behaviour success team. It’s part of the prevention approach. They figure out what’s going on, taking the DIR philosophy to try to figure out what the student is experiencing and if there is some sort of difficulty.
They contact the parents and have a specific protocol on how to assess where they’re at, asking about what’s going on at home and if there’s certain things that can be causing them to be having a hard time at school. Richard develops a relationship, sharing and communicating everything that he’s learned with the team.
Richard aims to bring the Floortime perspective by using the children’s interests in the classroom and in his sessions. Beginning with the team and with the families, he wants to meet them where they are at, developmentally, and get on the floor with them to play, developing that relationship, and scaffolding from there.
Richard has learned the value of reflective practice and videotaping sessions, so he tries to do that as much as possible because they’re lucky enough to get the permission from families to share it with the school and their classroom team, as well as with all the staff members of Giant Steps for professional development so he can do workshops on Floortime, talking about what he’s doing, why he’s doing it, and why they should be doing it in the classroom.
Floortime Sessions
Richard says that the students love the area near the window, so he has a big mat to play on. He has toys and items to make an obstacle course to give the kids movement, taking into account their individual differences and what they might be needing in that moment from a sensory perspective. They also play in the hallway because there’s a couple of things students love to do in the hallway where they have seats and areas for the students to relax.
With one student, Richard continues, he had that gleam in his eye as they began to play. Richard went on the floor with him and imitated him and the child seemed to feel that Richard understood him. He was running and jumping then sliding on his knees to get that proprioceptive feedback. He would look back at Richard and Richard started getting that back-and-forth as the student was looking at him and laughing. He took Richard’s hand and brought him to do the same, which was just incredible to have that moment with him, Richard shared.
I told Richard that he made the student feel comfortable enough where he was comfortable initiating, which is what we see once the circles of communication get flowing. They start their initiation, and then you can start to work into the fourth Functional Emotional Developmental Capacity.
Richard continues that they go in the hallways, in the schoolyard, and in different environments that really set the children up for success. He shows us the sensory bin with fun toys and talks about how he will get lots of fun back-and-forth around these toys, such as when they fall, which creates a problem. They’ll look and sometimes it falls underneath the tables and then they have to wonder where they went.
Richard says that they will have fun closing the blinds to make the room darker with the light-up today and he’ll put in a little bit of a playful obstruction by taking out the batteries and wonder what they’re going to do together. And of course, he says, that they have sensory play, including balloons. Different children will communicate in different ways wanting him to blow up the balloons for them. Some will bring it to him, and another signs to him.
Implementing Floortime
Richard also tries to implement AAC as much as possible. One student has an iPad. At Giant Steps they use TD Snap and have been able to get donations and grants to give iPads to students and teach how to use it in the classrooms. They’ve seen really great outcomes from this, as it’s so important to be able to communicate, Richard says. And for the younger children, they’re not teaching or expecting them to use the AAC yet, but they are just modeling it to have them get used to it.
Looking and reflecting, as well as communicating and sharing with the school, Richard’s been figuring out the best way to implement Floortime in the school environment as working one-on-one is tricky. They’re trying to think outside the box to have it in the school system, such as thinking about how they’re interacting and setting up the environment, and how to include families.
Richard says that a big learning experience for him is really thinking about what we’re saying that we’re doing, including how to present ourselves. The self-reflection helps him think about how he’s feeling and if he’s able to attune to the students rather than thinking about all of the responsibilities and everything else he forgot to do. If you’re in your head, Richard says, you’re not in the moment with the students.
Richard is really enjoying the constant progression and the new centre which is meeting a lot of the students’ needs. It’s a lot more spacious. The gymnasium is incredible so when it’s very cold in Montreal, it doesn’t mean just staying in the classroom anymore. They can have fun and run around in the gym to get that energy our. Then, the students are more prepared to learn in the classroom afterwards.
Thank you to Marla and Richard for sharing the story of this incredible new centre and how they do Floortime with us. We hope you found it interesting and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Giant Steps Interdisciplinary Autism Centre appeared first on Affect Autism: We chose play, joy every day.
Photo by Christina Morillo**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
Andrew Klein is a DIR Expert and Training Leader and a pediatric Occupational Therapist at Emerge Pediatric Therapy in Durham, North Carolina where he has a specialized role in facilitating reflective supervision with his colleagues. He is also a certified trauma professional through PESI. He started his career at the Rebecca School in Manhattan where his Floortime journey began and he is the father or two active young girls. The topic for today is Reflective Practice in DIR.
I’ll refer listeners to the podcast I did with Dr. Gerry Costa on Formation and training practitioners in this field, which included a discussion around reflective practice.
Reflective Practice in DIRby Affect Autism
https://affectautism.com/wp-content/uploads/2024/05/2024-05-24.mp3Bonus Insights
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Andrew’s Journey to Reflective Practice
I asked Andrew how he became interested in reflective practice. Andrew likes to paint a picture of his journey. He says that reflective practice was created for practitioners but it can be so helpful for parents and families, too. He was lucky enough to begin his career at the Rebecca School, an incredible place where there is a practice of recording and reviewing videos together, with permission of families, for the purpose of bettering the practice for everyone. He probably took it for granted, he admits.
When he moved to Durham, North Carolina to work at Emerge Pediatric Therapy, there was a wonderful culture of supporting a strengths-based approach and the DIR model. He noticed that the practice of watching video to absorb what happened in the sessions wasn’t there. They would sit and talk about cases, but it would be more about analyzing it from one of their frameworks. Something was missing without the video piece. It happens in Floortime courses, but to have it in your work every day is something special, he says.
To further his role as a specialist on the team, he began doing reflective supervision, which he could have also called Floortime coaching, but he liked the idea of calling it reflective supervision because the team sits together and reflects on video. He wanted to gather more information on what this means to professionals. Him and his colleague, Dr. Kavitha Krishnan did a single subject six-week reflective supervision treatment phase, then six weeks of a non-treatment phase.
Fifty percent of participants showed improvements in the treatment phase and afterwards on therapeutic use of self metrics (the P-CAM and the CASI) from the University of Chicago, and on the Reflective Practice Questionnaire which which included things like reflection ‘in action’, ‘on action’, confidence and comfort in the work they’re doing and how they’re using themselves in treatment.
Having Others Integrate Reflective Practice
Andrew soon realized that the next step is to have others integrate reflective practice into their own practice. The first step in his study was the literature review, which helped him deepen his understanding of reflective practice and reflective supervision. He realized that to support other professionals in this, it goes beyond watching then reflecting on video, then asking reflecting questions.
There’s a whole depth in reflective practice and reflective supervision developed by those in the fields of infant mental health and nursing, Andrew continues, but there’s relatively little for Occupational Therapists, Speech-Language Pathologists, and Physical Therapists. It’s simply mentioned how valuable it is. When you submit to have research done, you have to submit it through an IRB, the Institution Review Board, which is the organizational body that controls research and is the gateway to publication.
The process to be compliant involved hours of blurring faces in videos and was a lot of work. Their next steps are to broaden this for others, Andrew explains. They recently created a class on Reflective Practice to broaden interest in this alone. Andrew says that because he loves the research on Floortime and the beautiful works on the value of Floortime to families, he wants to look at the value of reflective practice to practitioners and how it helps practitioners in their work settings.
Reflective practice is a beautiful subcurrent in the Floortime model, but it has a whole world of literature that lives on its own, and I think helping people focus on that, specifically, has its own merit. And, our hope is that if people are interested in this, we can continue to further our research into reflective supervision and create a follow-up course on reflective supervision and gather data on that on its own, which again would be really valuable.
Andrew Klein, DIR Occupational TherapistThe Value of Reflective Practice
I recently re-took the Advanced Certificate course with ICDL, DIR 203 as an auditor, to refresh my learning, and what I took away was the value of reflective practice for parents. I have done a number of podcasts on Self-Reflection, the 9th Functional Emotional Developmental Capacity in the DIR Model, with Clinical Psychologist Andrea Davis. It’s the first thing I tell parents to do: to review video of themselves playing with their children, and it’s the most avoided practice!
I expect an equal amount of apprehension on the part of practitioners to recording themselves on video, even though you do have to share videos in ICDL’s DIR Certificate Courses. Rarely, though, do they make it part of their everyday practice. Andrew says that the beauty of reflective practice is the autonomy piece on the caregiver and therapist level. The reflective realm is one of the most powerful places to find that, Andrew continues, but it’s hard.
Obstacles to Reflective Practice
Andrew talked about obstacles to reflection in his presentation at last year’s International DIRFloortime Conference. One is that it can also mean a few different things in our Floortime world, he says. Capacity 9 is Reflective Thinking and an Internal Standard of Self, and that’s that is an important starting place, Andrew said, because it also reminds us how much we have to have in place to be in our reflective space. We have to be well regulated. We have to have a lot of things going on in place to really be in a reflective mode.
Andrew says that reflection is not something that comes easily it’s also elusive and abstract. So one of the things he’s been trying to do is to bring some vibrancy and joy around reflection. Bringing warmth and attention to reflective practice is really so valuable, he continues.
Defining Reflective Practice
Andrew says that we define reflective practice by the process of reflecting on one’s actions in order to facilitate a cycle of continued new learning. This can be broken down into reflection ‘in action’, which occurs during the therapy process, and reflection ‘on action’, when the reflective practitioner looks back on events. These definitions are derived from Donald Schon’s book, The Reflective Practitioner, which is similar to what Engaging Autism is in the Floortime world. It is a seminal work, Andrew states.
Reflective Supervision is a process for supporting and developing Reflective Practice through supervision. There are three core elements: reflection, collaboration, and regularity, Andrew explains. That definition is by Rebecca Shahmoon Shanok from the world of Infant Mental Health where they’ve really created a robust framework for Reflective Supervision, Andrew says. He became super interested in how it exemplifies the art of practice that’s the most beautiful thing to him. It really resonated with him.
Art and Science
For a long time in his work, Andrew continues, he looks at it as a complicated fusion of using something that is scientific with something that is artful. In terms of obstacles, Schon talks about how this is something that’s really challenging for us in our culture where it is believed that scientific theory will always guide us to an answer, Andrew says. We believe in something until we can disprove it, so we are locked into a very scientific way of thinking, so it’s hard for people that are professionals to believe in something that’s ‘artful’.
For a long time in his work, Andrew continues, he looks at it as a complicated fusion of using something that is scientific with something that is artful. In terms of obstacles, Schon talks about how this is something that’s really challenging for us in our culture where it is believed that scientific theory will always guide us to an answer, Andrew says. We believe in something until we can disprove it, so we are locked into a very scientific way of thinking, so it’s hard for people that are professionals to believe in something that’s ‘artful’.
But Andrew believes that you can use your intuition and, in the moment, reflect on what you’re doing, then use that to pivot, think flexibly, and paint pictures of what’s going right. It’s the art of practice. He also learned to reflect on what’s happening in the moment and it makes him think about the tools we use in Floortime, such as when we talk about wonder and being curious. Seeing the big picture, looking outward and inwardly, and then being comfortable with uncertainty is a big piece, he says.
We can go with the current and as things continue to grow and change, Andrew continues. I shared that from a parent perspective, we have this idea that our children get diagnosed and we go to the experts and they can help us. That’s sort of like the scientific method that Andrew is talking about here. There’s a way that things are supposed to be done and the other piece is more subjective, and more flexible. The intuition is driven based on experiences and what you know.
Parents can think we feel more comfortable when we go to see an experienced professional because they have that experience and they’ve seen so many children, so they can draw these experiences. With Artificial Intelligence that’s coming, that will impact it because you’ll go to the doctor and A.I. will have millions of cases to draw from to predict what is going on.
But, I added, there’s a saying, ‘brains over bots’. Our brains have something that can beat A.I. because of this piece that Andrew is talking about. It’s so elusive, Andrew says. A machine is not going to be able to interpret in an artful way. It’s always going to go back to its data and use that data instead of using all of our ability to really think creatively. The human mind has capacity for that, Andrew believes. DIR is about that nuance, he says.
The Generative Metaphor
Andrew believes that this reflective practice is really about just being comfortable setting the problem, and being able to to describe and create what the problem is in our minds, instead of jumping to the solution because we’re so solutions-driven. We can analyze the problem, know what it is, and understand it so we can describe it in itself. This is incredibly powerful, Andrew believes, because not all problems are solvable.
Andrew talked about the ‘generative metaphor’ that is a really powerful tool that generates reflection. He says that the metaphor, “It’s raining cats and dogs” probably is not a generative metaphor because it doesn’t help you understand the rain any better. It’s just a silly way of describing rain. On the other hand, saying, “He’s going from 0 to 60” about a child you’re observing might help you see that there’s a rapid trigger, so you can figure out how to gain some space in that moment.
The Learning Tree
Andrew always talks about The Learning Tree in his classes because he thinks it is such a powerful generative metaphor and helps frame the way people think about childhood development. I explained that The Learning Tree was Dr. Stanley Greenspan’s last book before he passed and that his son, Jake Greenspan does have a good video describing it. In a podcast I did quite a few years back now, I talked about how I brought my son to Jake Greenspan who shared something very powerful that has stuck with me about the learning tree.
I was waiting and wondering if my son was ever going to reach the fourth Functional Emotional Developmental Capacity (FEDC). Am I ever going to see imaginary play? What’s going on? And Jake described that he saw all 6 FEDCs in my son, but that the tree trunk is very narrow, so we need to widen that trunk. In certain conditions, we might see peeks into the 5th and 6th capacity.
He told me that now we needed to widen that trunk by making sure he can have these capacities shine in different environments, with different people, in different situations, when he’s distressed as well as when he’s happy, etc., and that really helped me reframe that whole concept of the tree. Andrew says that it didn’t really solve a problem for you, but it painted a picture that gave you a path forward. It made Andrew think of reflection ‘in’ and ‘on’ action from Schon’s framework.
Reflection ‘in action’
It’s really about action, Andrew explains. He says that one reason we tend to knock reflection is because people think you’re just getting stuck in your own head. You’re not doing anything. But this framework really gives us our path forward. This could happen very quickly, he says. Reflection ‘in action’ is usually the idea that we kind of bring that voice of what we’re wondering about to life.
I pointed out that Dr. Andrea Davis described it as picturing yourself wearing a GoPro on your head and watching yourself as you’re doing Floortime, having that in mind while you’re also staying in the moment, which is tricky. We do it a lot in the Floortime, Andrew says, but you have to be in the right space for it, or you have to have the right people around you in the right environment. That’s the idea of reflection ‘in action’: being able to be patient being patient.
So there’s ‘in action’, Andrew continues, where we can reflect and choose what we want to do instead of either feeling pressured to act or feeling paralyzed to act. That’s the power of reflection in the moment. It can also happen over the long-term, he says. If you have an ongoing problem, it still would technically be a reflection ‘in action’ because you are thinking about how to solve that problem that is still happening.
That could be something like working with a child for whom transitions are really hard, he suggests. It’s still an ongoing problem and you might reflect on a particular transition, Andrew continues, but you still are reflecting on how you can continue to support that problem.
Reflection ‘on action’
Reflection ‘on action’ is really looking back at events, Andrew states, but still thinking about how you can refine what you’re doing to support each other in the future and that’s the beautiful vessel for the video that we talked about, he says. I pointed out that you remember in that moment what you were thinking when you watch video. The value of it for me is seeing what you missed. I saw so many cues that my son was giving me and I just ignored them because I had my agenda in my head.
Especially when you’re a new practitioners learning, you’re so focused on that you learned and wanting to put it into practice and they’re thinking about that so much, that they miss what’s right in front of them sometimes, and that’s okay because that’s the thing about reflection. It’s okay to acknowledge it and you want it in your awareness because it’s a process we’re all working on. Andrew agrees, saying it’s a practice.
In Floortime, we are firm believers in this as a process and a practice and not something you can just learn and then be done learning because it is incredibly fluid and dynamic, so it has so much depth. So, Andrew says, he is really a big fan of integrating reflection into the work. He gave an example of when he was working at the Rebecca School, immersed in such a beautiful, reflective culture.
Andrew doesn’t think he had the subcurrent of understanding reflection well yet. He would have moments where he was really trying to integrate something he learned from coursework into his practice. He was really trying to integrate his sensory integration learning. He had taken a class that talked about the arousal states, how alert we are, and how it is not always correlated with how active we are.
A child who is seeking consistency and rhythmicity may be over-simulated overall and seeking novelty, or may be under-stimulated trying to seek some novel stimulus to get himself more alert, which in some context is super accurate. He went so far during one of their weekly Greenspan case study meetings as to describe a child who was frequently falling asleep in class as being aroused because he could be rigid and find it difficult to accept change, and looking back at that afterwards, that doesn’t make sense.
Andrew wondered why he would say that, but he was trying to draw from a very specific scientific framework instead of simply observing and thinking. So, he says, dynamically, there are a lot of complexities with arousal level right from how well we sleep at night to how well we are responding in a particular context or environment, etc. The child was probably overwhelmed with transitions, but it would be very hard to describe that state of arousal as consistently hyper-alerted.
For Andrew, this was a great example of if he had had a better reflective framework at the time, he could have painted a picture of what’s going on in this whole child’s life instead of focusing on something so specific. He is happy to talk about his own past shortcomings and in and acknowledging this is how we learn and how we continue to reflect.
Over Analysis?
I wanted to talk to Andrew about his point about people saying that reflective practice is getting stuck in your head. I’ve been on a mailing list of Arnold Schwarzenegger’s new pump club and he talks about how for workouts, people over analyze. They think they’re not working out enough, and wonder if they should so something this way or that way, or in the morning or in the night, and wonder how much protein should they eat. He said, at some point, it doesn’t matter. Just do whatever you can do, which is better than doing nothing.
That’s not exactly equivalent to what we’re talking about, but I said I can imagine that there might be some people who get stuck in the reflection and over-analyzing which might impede them from just being in the moment and attuning to somebody. Andrew says that the difference, though, between reflective practice and just getting lost and stuck again, is painting a picture of your situation and just figuring out how to play and engage and connect with a child in the way that supports their fluctuating arousal states, in the moment.
If we’re really being a reflective practitioner, Andrew continues, it’s about having a space for reflective practice. And we call it reflective supervision, which is when you have that partner. Then you’re able to do that regularly, and that partner is just someone that’s there with you, not to critique or supervise you. I asked Andrew if he thinks that making a plan is part of reflective practice. Andrew says it can be if it’s not prescriptive.
Andrew believes that a plan of action can be helpful if it is derived from a reflective thought process. He thought of a student in a certificate course he taught whose client struggled with free play and required some structure to stay regulated. They came forth with a plan from their reflection. They decided it would be really helpful to start their session with the child by creating a visual schedule, and then still incorporate all kinds of wonderful Floortime in the session.
This plan was derived from a reflective process and that plan should also be dynamic, as it goes on, because if our goal is to really create wonderful Floortime sessions, we probably want to continue to work on scaling back some of that structure to get that child more comfortable with uncertainty and ambiguity, so having a plan is great, as long as that play continues to be dynamic, Andrew concludes.
We have Flexibility
For that I’ll refer people to the 2-part podcast I did with Joann Fleckenstein and Mike Fields on praxis because sometimes parents say their child doesn’t want to play and just keeps running around. In that case, yes, it might be more helpful to have a structure because motor planning and praxis might play into it. The important point here is that Andrew said the plan is always dynamic, so we’re always kind of reflecting in the moment, asking where the child is developmentally, today. How are the individual differences impacting them today?
How is the relationship going today? Does the parent have something on their mind and they’re coming in with a different affect that’s impacting the way the child is reacting? All of these things come into play and there’s so many variables every single day. You can never just pin it down to one or a few things, which is why Floortime is so difficult for a lot of people, because there isn’t a prescription. We have a framework, but we have so much flexibility and it really comes back to practice, so that’s what’s so great about it, Andrew concurs. It’s a beautiful model.
Andrew Klein's Reflective Practice CourseCheck out Andrew’s course Reflective Practice in Peds: Becoming your most confident practitioner-self, a 3.5-hour self-paced course that is a nice starting point for reflection focuses on the reflective components works on refining the idea of reflective practice as a study point. It’s on the Therapeutic Edge collective.
This week’s PRACTICE TIP:This week let’s pause to reflect about our work–whether as a practitioner or as a parent with our child.
For example: Video tape your play and as you watch it, reflect on the points Andrew talked about. Are you in the moment? Are you emotionally with your child? Are you supporting your child’s regulation? What did you miss that you can keep in mind for next time you play?
Thank you to Andrew for sharing his work on reflective practice with us. We hope you found it very enlightening and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Reflective Practice in DIR appeared first on Affect Autism: We chose play, joy every day.
Photo by Nicola Barts**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This week’s podcast features DIR Expert Erin Forward, a speech-language pathologist and certified lactation counselor at Cincinnati Children’s Hospital. She is a part of their interdisciplinary feeding team and their outpatient setting. Erin has advanced training in pediatric feeding and swallowing disorders, early language, AAC, and trauma–specifically for medically complex children, is an Advanced DIR®Floortime Provider, and a TBRI® Trained Practitioner (Trust-Based Relational Intervention). She is also the regular co host of the podcast First Bite with fellow SLP Michelle L. W. Dawson.
Taylor Anderson is a pediatric speech-language pathologist in Tampa, Florida, who is passionate about neurodiversity-affirming care, interdisciplinary collaboration, and a play-based approach rooted in relationships. Taylor is a Basic DIR/Floortime Provider and a TBRI®Trained Practitioner. Our topic this week is DIR/Floortime in medically complex children, based on Erin & Taylor’s recent presentation at the 2024 DIR conference in New York City.
Healing-Centered EngagementNote: After we recorded this podcast, we saw this article about replacing the term Trauma-Informed Care with Healing-Centered Engagement.
DIR and Medically Complex Children: Trauma-Informed Careby Affect Autism
https://affectautism.com/wp-content/uploads/2025/05/2024-05-10.mp3Bonus Insights
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Trauma-Informed Care is Aligned with DIR
Taylor starts us off by explaining that the focus of trauma-informed care very much aligns with DIRFloortime: Connecting with a child, giving them autonomy, and building collaborative goals (Collin-Vézina et al., 2020), and doing this all in the mindset of what the child’s been through up until then, what systems they’ve been involved in, who is part of their care team, and making sure everybody is on the same page. Erin adds that you can’t have trauma-informed care without also being neurodiversity-affirming because that is a culture and experience that somebody has, which also has to be recognized.
In any hospital setting, Erin continues, you have to overcome traumatic experiences that a child has been through. There’s a lot Erin tries to do, as a clinician, to help a child feel safe in a setting that is likely to invoke trauma. She can’t know everything they’ve been through, but she knows that experiences in the hospital are very traumatic. I shared my experience of being in the hospital with my own son for four months when he was two years old and how traumatic that was.
I asked if she is only specifically referring to that hospital trauma. Erin said that they treat trauma as all-encompassing no matter the little or big ‘T’ trauma that refers to the ‘ACEs’ (Adverse Childhood Experiences such as violence, abuse, neglect) that children have been through. All trauma and experiences are valid, Erin says. We don’t have control over the way our body reacts over trauma, she says. She uses the metaphor of the rings of a tree. We may not always see it. She will always assume there is some trauma there and use trauma-informed care with new families. The focus is always on the family, Taylor adds.
‘Felt’ Safety
Erin says that the goal is always to have the client have a sense of ‘felt’ safety. Karyn Purvis–who developed the TRBI–talks about how a child can feel unsafe long after the trauma, even if their current physical environment is safe. It takes time to get to know the family to understand this, Erin says. I pointed out that my son may not remember his hospitalization, but his emotional system has stored that fear of bandaids.
See these podcasts on raising a child with a disabilityI wanted to point caregivers to my podcast with Dr. Robert Naseef on Ambiguous Loss, which certainly comes into play with a child who has complex medical concerns. I also did a podcast with Stephanie Peters on the realization phase and a podcast with Dr. Joshua Feder about supporting parents in the process of accepting reality that both get into this adjustment for parents of having a child with a disability.
Accepting All Forms of Communication
Erin and Taylor are both speech-language pathologists so I asked them about communication including presuming competence, promoting autonomy, and the concept of dignity of risk. Erin says that with her medically complex clients, who often spend years in the hospital–whether they’re getting a transplant or something else–they don’t have control over what happens to them. The medical team is trying to save them. We want to provide a sense of autonomy with trauma-informed practice, she explains.
We know that children who have medical disability have a higher risk of abuse, so when they say, “No“, we want to honour that. Erin noticed that a client shut down every time her and the mother started talking–even if about the weather, and the child said, “All done. All done.” Even though it was only 10 minutes into the session, Erin suggested they end so the child would be more likely to come back next time.
Especially with individuals who have motor challenges and/or cannot speak with words, Erin says we have to make sure that every way that they communicate is being honoured and valued. This is where circles of communication play a huge role, Erin says. Communication starts as involuntary behaviour when babies flail their arms or grimace. We honour it and build attachment and attunement. For us to help expand a child’s world, that’s when we work with communication to build off of their ideas so we can help them with what they imagine. They deserve to experience the world in the way they want to.
Autonomy versus Independence
Taylor continues that if we want a child to be independent, without support, using a communication system such as an AAC device, we might limit what they have access to. Maybe on their own, she says, they can access this, but with a partner, can they access more vocabulary and expand on this if we’re not so focused on removing supports so they can do things independently.
Autonomy has to do with a person’s ability to act on their intrinsic motivation and their own drive.
Taylor Anderson, DIR SLPWe can better support the person if we are supporting autonomy, Taylor says. As a Speech-Language Pathologist, her role is helping the person communicate by saying whatever they want to say, when and how they want to say it, with whatever supports are required. They are no longer writing goals for communication without supports. Requiring support to accomplish a task is not a diminishing factor, she insists. Knowing who you are and being able to ask for the supports you need is powerful, she adds.
Presuming Competence
I asked how Erin and Taylor help parents presume competence and gave my example of being so traumatized by my son’s experience in hospital as a 2-year-old, that I have just done everything for him because I never wanted to see him suffer again, and how that has robbed him of the dignity of risk and being more autonomous, now that he is a teenager.
Erin said that, as an SLP, she never fully realized that how we talk about a child and how we communicate with a caregiver affects mental health. Although she hasn’t experienced what the caregiver experiences, many have shared with her their experiences of being in fight-flight-freeze about making sure their child is safe. Erin says that her number one job is to understand a child and a family. She spends most of her time during the sessions to do that.
She shared a story about a mother just wanting to hear her child say that she loved her. Erin pointed out that while the child may not say those words verbally, the child reached out and touched the mother’s leg, and that is one way that she communicates her love. It doesn’t have to be through words.
The Importance of Play
Play is so valuable because you can release some of that anxiety about your child’s safety through play and being silly. You can give your child the experiences and emotions of going through situations in play, while the demand is less intense, without having to go through them for the first time in real life.
Parent-Child Attunement
Parents also feel defensive about justifying why they are helping their children when others judge that they are ‘babying’ their child. It’s important to educate and advocate for your child’s needs and why it might be important that you are supporting your child in ways that others don’t see as necessary. Parents often know when their children need support better than others looking in.
Taylor adds that this goes back to attunement. Parents are attuned to what their children need, and this can lead to helping to foster their child’s autonomy as well. I pointed out the whole idea of individual differences, as well, where each individual child has different needs and you don’t treat every child the same way.
The Functional Emotional Developmental Capacities in the DIR Model – FEDC 1
FEDC 1: Self-regulation and Interest in the World Erin points out that regulation can change from hour-to-hour with any of us, depending on our sensory input, the environment, our engagement, etc. Children’s regulation is affected by their medical etiologies. One of Erin’s clients has a cardiac condition with gut issues. If the child’s stomach is bothering him, she won’t get the same engagement with him that she might on another day. We have to think about the environment, our therapeutic presence, and what supports we are providing, Erin says.
We have to learn to trust the children that we work with, Erin says. If a child comes into a session more dysregulated, Erin isn’t thinking they have to push harder. This is information. She has to wonder what happened today? She works with where the child is at in the present moment, and doesn’t expect that they will carry on from where the last session left off.
Another big piece of regulation with medically complex children is the ones who have low arousal due to their motor differences or experiences, Erin says. Her cardiac patients might fatigue more easily, for instance. She still wants to work with them to have desirable experiences. Regulation does not mean calm, she asserts. It means that my body is ready to engage with the task that I want to engage with.
A child may want to do something that requires higher arousal, but that requires trust, Erin explains. So many people touched their body in a medical setting. The child may require tactile support to have those desired sensory experiences, so Erin will build in some experiences of positive touch first, and see their reaction to it. These are just some considerations, she says.
I mentioned another presentation at the DIR conference in New York in March by Occupational Therapists Amy Lewis and Gretchen Kamke where they talked about an ‘adaptation window’–a better way of looking at regulation, based on the latest neuroscience. You could have two children looking calm where one is under-aroused and one is over-aroused. You can’t necessarily tell by looking at the child.
Children are no longer labelled ‘sensory seeking’, for instance, because in some situations they might be sensory seeking, while not in others. OT Virginia Spielmann described this as a control board at a radio station where everyone has different levels of arousal in different environments. I also brought up the interoceptive awareness that can affect regulation.
My son can now tell me when his stomach hurts and he might be about to have a bowel movement, whereas when he was younger he would get very aggressive and couldn’t articulate why, and then he would have a bowel movement. Erin says that sometimes doctors will say that a tube in the child’s nose shouldn’t bother them without understanding how it affects the child’s sensory or regulation piece.
Erin gave an example of a mother saying that her daughter was pointing to her leg and asked the doctor to look into it, even though the doctor was brushing it off. The mother trusted her daughter and they did discover that one leg was longer than the other and it created a lot of discomfort. The mother’s advocacy helped her daughter get the required help because the mother trusted the daughter’s communication cues.
The Functional Emotional Developmental Capacities in the DIR Model – FEDC 2
FEDC 2: Engaging and Relating Taylor says that we have to keep in mind that the way a child might seek love, connection, and/or attention may look different depending on their individual differences. This is why we attune to their unique communication style and way of communicating with others. We want to pay attention to their communication cues and their way of relating with others. How is this child in this situation right now? How are they lighting up with excitement?
What does it look like when your child is engaged with you? When do you feel the most connected with your child? What does that look like? How does that feel? What are their cues? In this capacity we want to set aside our agenda and follow their lead by entering their world and seeing what is important to them. We might need to support them to get there, while maintaining their autonomy, Taylor says.
This is why Erin loves the DIR training, because you really get to see what is so hard to describe. From a trauma-informed lens, you have very little control. The medical team is making the decisions. Even Erin has a hard time, as a clinician, speaking up to a doctor so for a parent, who doesn’t have the same health literacy as she does, she imagines it can be hard.
The Functional Emotional Developmental Capacities in the DIR Model – FEDC 3
FEDC 3: Intentionality and Two-Way Communication Erin’s goal is to help the parent and child feel as connected as possible. Once a caregiver understands that that’s your goal as well, it helps them drop a wall of defensiveness. Erin doesn’t take things personally from caregivers because they come in in the best way they can in that way. She gives them grace. Karyn Purvis talks about trying to say as many times we say ‘yes’ in a day rather than saying ‘no’.
We probably say ‘no’ way more than we realize, Erin points out. How many choices are we making for our child that we don’t realize? For instance, Erin does a lot of feeding therapy and maybe she’s always giving the child the blue spoon. Maybe she will offer a red and a blue spoon, and they might choose the red one–perhaps due to a vision impairment or a preference. We want to provide every option for autonomy.
It’s so important to acknowledge every communication effort that’s being made, even if it doesn’t seem purposeful, because that builds the attunement and relationship. It’s harder to access symbolic language when a child is in pain. Also, parents will often say that the child doesn’t communicate as much at home, but Erin points out that when they’re struggling so hard to communicate all day with people who aren’t understanding them, they may just want to relax at home, because we know that our caregivers understand us best.
Children know that their caregivers understand them best and may choose to communicate by touching your leg instead, for example. Practitioners need to give caregivers permission to allow their children to communicate in whatever ways they want to, Erin says. Language doesn’t always expand connection. Sometimes it does, but this intentionality and two-way communication is where we can start to build this trust in communication.
Less language doesn’t (always) mean less safety. Sometimes it means more.
Erin Forward, DIR SLPA client would come to Erin’s sessions with an idea, and one day he came with a piece of paper. It took them 45 minutes, but they figured out what he wanted to do. It was because of the time they spent in FEDC 3 with the communication that they were able to move into that shared problem-solving at FEDC 4.
I shared an example I found interesting. We recently went to a very familiar water park with another family who were coming for the first time, and they took my son on the water slides while I stayed and watched everyone’s stuff. The other mother later shared with me that when they approached the slide, my son knew to stand in the line up to get a raft before going up the stairs to the slide, but he never communicated that with them. They had to ask questions to get that out of him.
I had shared that example with DIR expert Jackie Bartell who wondered if it wasn’t because our kids are always being so guided by the adults in their lives, that they never have to communicate! The adults do it all for them! It reminded Taylor of going into schools where sometimes she’ll see an autistic child get up to go do something, and the teacher will say that they need to communicate why they’re getting up and what they’re doing. It just might not occur to them to do that, Taylor shares.
The Functional Emotional Developmental Capacities in the DIR Model – FEDC 4
FEDC 4: Shared Problem Solving Taylor says that we think about sharing ideas, giving choices and the potential for building autonomy in this capacity. The child’s number of communication circles are growing because they’re regulated, engaged, and have that intentionality. This is where we are starting to see their creativity so we want to follow their lead in play, give them choices, expand, and stretch their capacities.
Taylor continues that we want to see if they’re able to communicate their intentions and that we are attuned to those communication attempts. We can model for them. We want to help them show us their ideas and build on them. Erin continues that a child with Downs Syndrome, a feeding tube, cardiac conditions and more really loves vestibular input, but he needs support from Mom to get the amount that he wants.
They have built this beautiful routine where she helps him rock because if he rocks back and forth himself, he could hurt himself. He trusts his mother to support his body. This is also where communication devices are really helpful as well. There are kids who find something on the device because it’s something they’ve seen or want to experience. Erin will honour that. To end off, Erin shares a nice story about the son of a fellow Floortime SLP at Play Spark Therapy.
Erin Forward's FIRST BITE podcast and coursesCheck out Erin’s co-hosted podcast First Bite about feeding here. If you scroll down to the bottom of that page, you will see the list of courses they offer as well. Taylor appeared on the podcast they did on mentoring, as Erin was Taylor’s mentor.
This week’s PRACTICE TIP:This week let’s think about experiences that our children have experienced that are traumatic and how it has impacted their experience of ‘felt safety’.
For example: My son is completely aversive to band-aids because of his early experience in the hospital for four months when he was two years old and endured many intravenous changes and bandages on his arms.
Thank you to Erin and Taylor for sharing their work with medically complex children with us. We hope you found it very enlightening and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post DIR and Medically Complex Children: Trauma-Informed Care appeared first on Affect Autism: We chose play, joy every day.
Photo above: The Kredich boys performing at school.
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This week’s podcastfeatures Kim Kredich who has served as a volunteer advocate for hundreds and hundreds of students with disabilities in East Tennessee, working with families to help their children gain rightful, supported inclusion in the general education environment in public schools through the IEP process. She has worked closely with attorneys in Tennessee to promote systemic change and awareness of the rights of people with disabilities.
Kim is a wealth of knowledge about inclusion and the law. She knows IDEA (Individuals with Disabilities Education Act)* as this is all she’s done for the last 20 years. Kim is not an attorney and does not give legal advice, but knows about inclusion in the United States public school system.
Kim’s family found DIRFloortime very early on when her son was 2 1/2. She wrote a Floortime song CIRCLES AROUND THE SON over the span of 20 years that was recorded in 2021 when her son, Ben, had come full circle into a life of independent living with supports, having job opportunities, and having attended 4 years of college in the University of Tennessee Future Program, an inclusive, post-secondary opportunity for students with intellectual disabilities and autism.
Sadly last summer Ben, at the age of 24, was killed instantly from behind by an impaired driver while walking on a sidewalk towards downtown Knoxville. If you haven’t already, please view the family’s website dedicated to Ben where you can view the recorded live stream of the Celebration of Life and hear the family’s heartfelt descriptions of their life with Ben, which was so influenced by Floortime–especially Kim’s talk, which described the Floortime journey and introduced her Floortime song, Circles around the Son.
- In Canada, education is under provincial jurisdiction. See the Special Education Policies in Ontario, Canada here.
Advocating for rightful inclusion in schoolby Affect Autism
https://affectautism.com/wp-content/uploads/2024/04/2024-04-26.mp3Bonus Insights
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!What is Inclusion?
Kim says that inclusion is really just about the law, whether it’s The Americans with Disabilities Act (ADA) or IDEA, where IDEA is specific to public schools from age 3 to 22. IDEA has a least-restrictive environment provision which is essentially a student’s right to be educated alongside their typically-developing peers (i.e., those without an IEP) for the school day to the maximum extent possible, with a full range of supports and services, including a one-to-one aid, pull-out to a resource room or push-in by a Special Education teacher, related services such as Occupational Therapy (OT), Physical Therapy (PT), Speech and Language Therapy (SLP), or Music Therapy. She challenges anyone to find anything that couldn’t be included in the general education setting.
While there are many alternative placements, there tends to be a push to segregated classrooms. Perhaps it’s about their funding, or they don’t know, but it is a student’s right to be included in the zone school with a full range of supports and services before considering a more restrictive environment in a different school. I asked Kim what parents do when their school just says, “No“. She said that certainly happened to her and you realize that many teachers and staff just don’t know the law.
Kim had to quit her career to make sure her son was included. Kim had twin boys in 1999 with one being autistic, and a third son in 2001. It was important to her family to have the twins together in the same class so their family wasn’t pulled apart. While it might not be another family’s story, it is her story. When she was told by the school that they didn’t have the resources, she had to educate them. You soon realize it’s a systemic issue and you have to insist that you have to do this, to follow the law. Once staff sees the impact on inclusion not just for her son, but for the rest of the class, hearts and minds were changed, Kim states.
When a student with a pervasive disability is included with their peers, it creates a beautiful learning environment and research shows that the test scores and outcomes including empathy and other measures of typical students improve when they are educated with their peers with disabilities. It is every child’s right to be educated alongside their peers–disabled or not, Kim emphasizes.
Myths about Inclusion
One myth that Kim has heard over and over is that a one-on-one aid is the most restrictive environment. That’s just not true. It can’t be true, because a one-on-one aid is actually part of IDEA as a way to support the least-restrictive environment in a general education setting. If they say that they restrict the student or hover over them, you say that that’s not on the child, Kim insists. That’s aid training.
Another big myth is that your child can’t keep up with the rest of the class. That means that you can modify the content, even to the point where they take an alternate assessment. This applies to about one percent of the population. Kim’s son was on modified content and received a Special Education diploma. Kim felt that he was on the same track as his brothers who do not have disabilities. They all had the right to public schooling and the tenets of IDEA. The three tenets of IDEA are further education, future employment, and independent living.
Ben and his brothers all moved through school in the same way, Kim explains. Modified content is going to look different for every student with an IEP, but that’s the purpose of IDEA,: to move towards those goals, how ever it looks. Ben moved through with a Special Education diploma. He had further education in the University of Tennessee Future Program, put up his hand and answered questions in classes of 400 students, he went to football games, he lived in the dorms (due to Ben’s advocacy in front of the Senate Education Committee).
He played piano at assisted living centers, using public transportation to get him to and from work, so he was independent from his mother driving him. He lived a mile away from his parents. They took him out to get groceries, but he could also order his dinner online. This is an example of the parallel paths of a student with disabilities. He had all three tenets. I responded that we are advocates for our children with disabilities and Kim has laid such groundwork for other parents who don’t have the time or resources that Kim had.
Steps You Can Take
I shared that in the weekly parent support meeting I facilitate for the International Council on Development and Learning (ICDL), there are many parents who are immigrants with English as a Second Language who seem to be getting talked down to by their children’s schools. Kim said it was so hard for her, even as an educated native English speaker. She was treated terribly. It has more to do with the systemic denial of student’s rights, in her opinion. The parent is the expert on their child, Kim says.
With DIRFloortime, while you can’t gear your child’s IEP to a certain methodology, you can create a DIRFloortime IEP through accommodations, Kim explains. You have the right to request an accommodation to follow the child’s interest and to use the child’s interest. They had an accommodation for her son, Ben, to utilize musical and rhythmic strategies. This is on top of your related services that can also help with the individualized plan including OT, PT, SLP, music therapy, art therapy, dance therapy, etc. You can really ensure that the IEP team is listening to you.
Kim would always bring a friend, and for the sake of the record and the school district, get used to recording your IEP meetings. They will do it, too. It’s just a good thing to establish, Kim says, especially if English is your second language. If a relative can’t come to the meeting, they can listen after. A recorded device should not be seen as adversarial. You want to work collaboratively with the school at all times, ideally. If you put it out there that this is to help your understanding and to help you focus on the meeting.
There are wonderful resources in many states, and one of the best is Council of Parent Attorneys and Advocates (COPAA) which has resources, knowledge, chat groups, etc. all centered around parent and student’s rights. It’s a very glued-together community of people representing the rights of students with disabilities. It’s such a small membership fee for so much, Kim stresses. It’s hugely discounted if you’re a parent or student. Get yourself a friend and work together with people in your community, Kim says.
Kim has now seen groups of parents attending each other’s IEP meetings in her community now. Then, you get up in front of the school district and talk about the systemic issues and you put forth a collaborative mindset, look at the numbers, and in that way, Kim explains, you’re really reaching out to the greater good. Of course you are always looking out for your own child, but by your child getting what they deserve under the law, you will essentially be pushing for the greater good because more teachers, administrators, and other families will see how it’s supposed to work. You get a larger community advocating for everyone else.
Look at their Inclusive Rights First
I asked Kim about one-on-one aids. I have heard schools saying no to the family’s home aide. Also parents can’t afford attorneys and what do you do if the school just keeps saying, “no“? Kim says it’s very hard to afford an aid. There are now outside service providers who go into the school that are covered by insurance for behavioural support. Kim says you actually want the school system to be providing that person. The way that you communicate how that support is delivered is to talk about that child’s unique needs. That’s where the parent has the power. You can advocate for the child needing that relationship.
You can also show videos of what works at home. When the school system says they will use their own aid, and if it works, great! If the school says that your child won’t do their work, then maybe it’s not being modified appropriately, or the aid is not doing all they could that would support that student’s learning. If you show a filmed DIR session and say that this is how you can do it. When they say, “Can’t… won’t…“, you say “Does… will“. You don’t want to be adversarial. Show support for the teacher and support for the school.
Kim says look at their inclusive rights first because in a segregated setting, this is where things can get chaotic and they don’t have enough support because it’s multi-grade in one setting. It’s not set up for success for anyone. You have to look at whether your child can legally be, under the basics of the law, included in the regular education setting with the appropriate support, with modified content if needed, with breaks, alternative work space, etc. You first need to know what’s available. A lot of it is on the internet.
You can also get in front of the school board and suggest bringing in organizations that partner with school districts to provide best inclusive practices such as Inclusive Schooling in Syracuse, New York, or the Maryland Coalition Inclusive Education (MCIE). Maybe you have to do a Request for Proposal for that, Kim says. You can also file an administrative complaint through COPAA. You do not need an attorney to do that. COPAA provides examples and you can take seminars. Vanderbilt has an advocacy seminar in Tennessee and you can get scholarships to take that. You need a group of people who are comfortable doing different parts of it. Team together.
It is a Process
It’s overwhelming. Kim wants people to understand how hard it was for her. She calls the early days, ‘the dark days’. While Ben ended up being very conversational and independent. He was a joy. He was social. He still had his challenges, but she says in the early days it was so hard. There was a lot of head banging. She can’t emphasize how hard it was facing the realities of autism.
Luckily, they found DIR/Floortime, but it doesn’t change overnight. It takes years and years. You see the results bit-by-bit, then in totality. So, doing that while having to go up against a school system can be devastating. On the five year anniversary of Ben’s diagnosis day in 2006, Kim and her husband talked about which was harder–autism or the school system? The school system, of course, her husband said. It was so hard. The battle took so much of her energy and her soul, she says.
Kim says she fell short everyday. Many days she could barely fit in one 20-minute Floortime session. But then she realized that her son’s play with his siblings and schoolmates counted as Floortime. I shared that we tend to, as parents, hold ourselves to such high standards when it comes to Floortime. Doing something at least as often as you can is better than nothing.
Many of us have neurodivergences–diagnosed or otherwise–so we feel overwhelmed and sometimes don’t know where to start. Taking little steps help. First step, look up COPAA. Maybe that’s all you do in the next week! Take one more step the next week, such as contacting one other parent. In one year, each little steps add up and you’ll be surprised about the things that can progress. Kim says that in her specific case, she had to fight for inclusion to get the natural Floortime opportunities that schooling had for Ben all day long.
Meaningful Progress
Kim continued that if your child is nonspeaking, being in an inclusive setting is a good way to have a lot of good and reliable eyes on your child. Other parents and especially the other kids can be the best advocates for your child. The general education and special education teachers see the benefits and can be advocates. The team members become believers in the right thing.
Due to your child’s individual differences, you can add in the Floortime breaks, including sensory breaks. You can make them meaningful, such as walking to the office to deliver an faux envelope, which allows you to get in that motor movement. Get to know your zone school where your legal rights are the strongest, Kim says. There are only two requirements to being satisfactorily educated as a student with a disability, Kim says: to be educated with their peers, and to make meaningful progress on the IEP goals.
You can always change the goals, Kim says, and they’re supposed to be calculated for the child in order to make meaningful progress. This needs to be first and foremost in an inclusive setting, and only if there’s data to show that you cannot make meaningful progress in IEP goals and get access to the general curriculum do you even consider moving them, Kim asserts. Resource room is a supplementary service. Technically, the resource room is only for students with IEPs, but here’s a different rung for a ‘special class’.
The rungs for alterative placements include ‘regular class’ with a full range of supplementary supports and services, to include one-on-one aid, pull out to resource room, and push-in, called itinerant instruction. These are examples of supplementary service. The rung of the ‘special class’ is only if the former doesn’t work. There’s been slippery language to say they’re both special education settings, so the school can do either.
They start the child in resource, then the next year they are in a special class that the school says is just a ‘special education setting’. It is not resource. It’s a multi-age class using an alternative curriculum. You have to be weary. Go with the language of the law and question it. Take a look at your zone school and research the possibilities for your child. Ask around, Kim says.
Your child doesn’t need to be at grade level. They can have modified content and have extra support brought in. This supports all students. You can go out to the playground to do math through hopscotch. This is a different environment. Utilize the child’s interests. This is all available under IDEA, Kim said.
She also gave an example of the lesson on irregular verbs such as hide/hid, fly/flew, and how a child with Downs Syndrome, on modified content, was able to put on a cape and fly and then talk about how the child flew, and how he went to hide under a desk and talk about how he hid under a desk. He had pictures to look at. He could listen to School House Rock on the topic of verbs, for instance. It gets things ‘cooking’ in the classroom, as Dr. Stanley Greenspan would say, and is engaging.
The Rights of Students Without Disabilities
Kim says that the students without disabilities also have the right to be educated with the students with disabilities for a more inclusive society. Who usually goes on to have kids with disabilities? People without disabilities! What’s so important to learn in school is an inclusive environment. School lays the foundation for an inclusive society where everyone can contribute and is benefitting from that basic right from the time they get early intervention, then through their education from age three to twenty-two, unless they get their diploma before that. This includes all children.
The Use of Alternative Communication
I asked Kim about a parent who said their school district refused to use the device that the child was most comfortable with at home. Kim says this falls under an ADA law. Students have a right to their preferred communication. Kim warns not to embarrass anyone by saying you know the law and they don’t. You can just point out that under ADA it says that the student with a disability is entitled to their preferred method of communication. Often, this will go up through the school district. You want to give them an ‘out’ and do the right thing.
I gave a theoretical response of the school saying that is the parent’s preferred method and not the child’s. What do you do? Kim said you can show a video of your child using their preferred method in the community. Often the child can say their preferred method, too, Kim says. Show them what works. In January of 2024, there is new incredibly detailed guidance about AAC devices that just got published from Office of Special Education Populations (OSEP). It will put everyone on the right path. It includes questions like whether training is required under IDEA. Yes, it is.
Take advantage of this information, Kim says, and bring it nicely to your district. And I added that self-advocates are advocating for preferred methods of communication and inclusive education, as well. Kim adds that when someone is able to advocate for themselves, as many new spellers now are–those who used to be considered incompetent–we have to listen to them. Parents should try everything out to see what your child gravitates towards in terms of alternative methods of communication.
Kim shares that it was the scariest thing when her son regressed at around 18 months and, although he could label things, he could no longer say juice purposefully to request juice. Floortime helped them so much, and it was right for their family. Kim read The Child with Special Needs and she followed the example of putting Ben’s toy car in the pocket of her cardigan. Ben slapped her hand. The second time she did it, she saw the gleam in his eye. DIR/Floortime insists that you go outside of yourself to follow your child’s lead, and it works.
Modified Content
I shared how I assumed that my child couldn’t be in public school because he is so far behind his same-age peers, academically. A segregated program has worked for my child, for my family’s specific circumstances. I encouraged people to find a way for your own child. You need to find that for yourself, with the support of others. Kim is merely giving an example of what worked for their family.
I asked Kim what modified content means. It’s crucial, Kim shares. She says that it has to be prepared. Maybe there’s a consult support district and if there’s not, make one. Maybe there’s a curriculum bank. Many states will have examples and exemplars of what that can look like. Kim says that when you think of algebra. You use things that you know to find the things you don’t know in algebra to find x. You might be in eighth grade and you can draw a rainbow with the colours red, orange, yellow, green, blue and purple. Beside it you have red, orange, clear, green, blue, and purple. You put x in where yellow should be then try to find x.
You can use construction paper and cut with scissors to work on these other skills, too. Don’t use the fact that the child can’t add or subtract as an excuse to not teach algebra. Everything can be modified to an individualized level so they can gain access to that. With Kim’s son, Ben, they used music. He was so good at music and rhythm, so they’d put a 1/4 note + a 1/4 note + a 1/8 note + x = a whole note.
I shared the example of my son’s modified content during Covid when they gave us a grid and tried to teach addition and subtraction. My son was not interested. So, I grabbed his Super Mario Hotwheels cars and put them on the grid, which I called a ‘parking lot’. Then 3 cars drove away. How many cars are left? My son was able to add and subtract. You need to follow their interest.
Kim spoke on the parent panel at the 2003 ICDL DIR/Floortime conference when Temple Grandin was the keynote speaker. She loved horses. Make everything about horses! Temple said use what the child loves to help them learn. This is how you reach them and teach them, Kim says. You can get a neighbour to play with your child around their interest.
In 2nd grade, Kim said that Ben liked dinosaurs, so Ben would play with dinosaurs. As the other children finished their worksheets, they would get to go play dinosaurs with Ben and this was working on his goal of turn-taking. This teacher was wonderful, Kim said. It’s Floortime. It’s bringing the students into Ben’s world in their interactions–their circles of communication. Kim says that Ben’s siblings were the ones who had the best ideas for Floortime.
The Beautiful Floortime Life
Kids are natural Floortimers if you encourage it, rather than allowing them to look at your child as weird and decide to bully them. That’s why you have to have the birthday parties and reach out to your community. Go out of your comfort zone to engage and showcase everyone’s individual differences. Kim said that her family did that, and it lead to a beautiful life for Ben, and for their community.
Kim never intended to find herself in her shoes, but she doesn’t regret a second of it. She looks back on Ben’s life and it was a beautiful life that extends beyond the physical life. It’s the impact and the philosophy: the impact of the events that occurred that will go on to change more hearts and minds. Public education can be that beautiful Floortime life.
Resources Council of Parent Attorneys and Advocates (COPAA) * Office of Special Education Population (OSEP)* * Individuals with Disabilities Education Act (IDEA) * The Americans with Disabilities Act (ADA) * Inclusive Schooling * Maryland Coalition Inclusive Education (MCIE) This week’s PRACTICE TIP:**This week let’s think about taking a step towards including our child in their community or school if you are at that stage with your child’s education.
For example: Do you have contact with other parents in your community who have children with disabilities? Did you check the links that Kim provided and take notes about the steps she suggested, modified to your child’s situation? Can you find out who to contact in your zone school district to get the conversation started on inclusive education?
Thank you to Kim Kredich for sharing her incredible experiences and resources that can help your child be included in a school setting. Please feel free to share this podcast and blog, and other helpful related resources on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Advocating for rightful inclusion in school appeared first on Affect Autism: We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This week’s podcast features DIR Expert Nagwa Khedr, who is an early intervention specialist in Cairo, Egypt. She’s been practicing DIR/Floortime since 2014 and was involved recently in opening a DIR/Floortime Center there called Etwasel, which means ‘Connect‘ in English. We met in person last year at the in-person DIR International Conference in New York City and have been planning to do a podcast ever since. Our topic is affect and regulation in the Middle Eastern culture as part of the ‘I’ in the DIR Model, Individual differences.
Affect and Regulation in Middle Eastern Cultureby Affect Autism
https://affectautism.com/wp-content/uploads/2024/04/2024-04-12.mp3Bonus Insights
D = DevelopmentalI = Individual differencesR = Relationship-basedDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!‘Fluorescent’ Affect
Nagwa says that in the Arabic culture, in general, the affect is big! The voices are loud, and people use their hands, facial expressions, and gestures when talking. They are very emotional and are very close to each other, physically. In DIR, affect can be changeable, Nagwa explains. You don’t always have to use affect the same way. This was a challenge when learning about Floortime, she admits. To them, affect is about praise. Affect is about the way you praise a child such as saying, “Well done! You did a great job!” with positive enthusiasm in your voice.
Nagwa explains that in DIR you tailor your affect to the child’s D and I, so it’s not a generic way of interacting with everyone. This was a challenge to adapt to in their culture. It is a challenge explaining it to parents, she says, how you can change your affect depending on your child. I shared an example of an Arabic mother from Lebanon I knew who held a very firm affect with her children that was a very limit-setting type of affect that I admired.
Parenting Style
Nagwa says that this is very similar to the culture in Egypt. She says that in Middle Eastern culture there is even a joke about this: you give the child ‘the stare’ to make them comply, but this lacks the R component of DIR, the Relationship, she explains. It’s not about connection, but about looking at the child and expecting them to stop what they are doing. Parents there get frustrated when they do ‘the stare’ and the child doesn’t stop, Nagwa shares.
This is the way that many were raised in her culture, Nagwa shares, and if your child isn’t listening to you or stopping when you do ‘the stare‘ it reflects on you as a parent–that you’re doing something wrong. It’s a very prevalent parenting style, so she has to begin to explain how to interact differently to parents.
Focusing on the child
Nagwa starts by having the parents look at their child as a unique individual with their own strengths and challenges that need support. She explains that you can’t just having a generalized way of parenting or having a generalized affect that will work with anyone. She will look at the child’s individual profile and have the parents in the session with them, seeing them play with the children, modelling how affect could look like, and having them reflect on why their child does certain things in play. Just telling the parents to “stop it” won’t help, just as staring at the child won’t make the child stop, Nagwa asserts.
Family structure
Nagwa explains that the family structure in the Middle East is very different than in Europe or North America, with the extended family being more involved. Even though the caretaking does mostly fall on the mother, it’s not just children and their parents. The grandparents, in-laws, and even aunts, uncles, and cousins are all together. Many families live in the same building and go in and out of each other’s homes. The pressure does fall on the mother, though, as their role is the most powerful for the children and their progress.
Supporting Regulation
When Nagwa tries to coach the parents, which is usually the mother, it’s hard because when they go back to the big family, they expect the child to comply. People still believe that regulation is compliance. If the child is not complying, behaving, or sitting still, it means they are dysregulated and needs more discipline. I asked Nagwa how she supports the mother’s regulation. They created a course for mothers to look at their own individual profiles, since they always speak to them about their child’s individual differences.
It’s never because you’re a bad mother, or too busy. You need to regulate first. We can’t regulate our children if we, ourselves, are not regulated. They try to let mothers know that they need regulation as well. They explore what makes them regulated and what triggers dysregulation? Do they have a co-regulator like a pet or a friend to help with their regulation? I wondered if maybe that can be easier in a collectivist culture since the mother has a larger family support system.
Nagwa says that while it can be a blessing because so many people will come to help and support you, many parents say that they wish they had more space for themselves so they can establish a routine for themselves since they are a very behaviourally dominated country. Explaining to family members about sensory and other needs can be very hard, because the family might believe that the child is just being spoiled. It can be hectic to have everyone involved in their lives.
Nagwa finds that the best method is to help parents to be more reflective in their own way. They can figure out why they did something, which is better than her just giving them ‘strategies’. Again, it is mostly the mothers, even though the fathers sometimes come in for the meetings. When you see a playful father, people often envy the mother for having such a helpful husband since the father is usually working while the mother takes care of everything else.
Focusing on Affect and Attunement
Nagwa tries to fit the affect with the child’s individual differences. It might mean speaking more quietly or slowly. It might be adjusting their cadence. It’s about taking the cues from the child. If the child is withdrawing from the interaction, figure out how to entice them back in by experimenting with your affect. Parents often tell her that they are doing it, but it tends to just be them praising the child rather than connecting and interacting with the child. She tells them to pause and observe.
Attunement in their culture, Nagwa explains, is different. She finds that when a mother is very attuned to her child and a good advocate, people tend to judge that the mother is making excuses for her child. People don’t really ‘get’ attunement. Mothers hear from other therapists that they, the mothers, don’t really know–that they, the therapists know better and the mother is just spoiling the child or making excuses. It causes the mother to not trust her own intuition, Nagwa suggests. She thinks that maybe her child is just being manipulative.
I commented that this must produce feelings of guilt in the mothers, and shared that I covered this topic in my podcast with Dr. Kathy Platzman, Avoiding the blame in Floortime.
Schools
Most schools there are behaviourally-based, Nagwa shares, and that most kids have an aid with them in the school. Nagwa tries to foster good relationships between parents and school personnel. She also explains that how we say things impacts another’s understanding. When we don’t have strong relationships with schools, things can fall apart, she says. Even when people are convinced, the teachers might say, “But it takes longer“. It may take longer, but the results are amazing, Nagwa reflects.
When they focus on connection and regulation, they see that it makes sense. Many of the teachers have taken DIR 101: An Introduction to DIR and DIRFloortime.
Making Sense of the Model
Nagwa says that the people in her country are very emotional, so it helps when they learn about the Functional Emotional Developmental Capacities (FEDCs) in the DIR Model because it makes sense to them. They want their children to have these emotional capacities. They tend to open up and share many things with others in the culture. Nagwa tells them to share their emotions with their children and to let the children see their emotions when you’re playing and interacting with them. It isn’t just about being happy all of the time.
Nagwa says that it’s about how they guide parents that makes the difference. Many parents have had other therapies before with their child that have taught them not to show emotions and to just give praise. When she explains fostering emotion, it makes sense to them not to ignore emotions. I asked if it was socially inappropriate to be that way in school or in public. Nagwa says that lately they have done awareness campaigns, but the stigma of having any diagnosis is still there.
Nagwa tries to foster a strengths-based approach. Still, mothers report a fear of being in public with their children with their friends because they’re embarrassed if their child has a meltdown, wears headphones, or stims. Everyone is involved in each other’s life so you will get a lot of stares and questions from others. Nagwa focuses on how to support each other versus judging each other, because they often like to tell each other what to do.
Etwasel
Opening their DIR centre, Etwasel, was a challenge at first because people wanted to ‘fix’ their children versus looking at the children holistically, Nagwa shares. They are seeing parents who are getting the idea and are more committed. They are taking baby steps, and like Special Educator, Jackie Bartell says, they are doing it one-by-one-by-one.
Research on Autism and the Middle East
I mentioned that the OCALICONLINE conference last November, there were a few studies on parenting and autism in a few middle eastern countries (here and here) and I wondered if Nagwa knew of any research going on there. Nagwa says they have been supporting research going on there and have flyers for their clients to participate. There is a current study on attachment they are recruiting for that is developmental in nature, while most of the research in the country is still behavioural in nature.
The Parent Journey
Nagwa recalls a family who embraced Floortime and how she started playing with a child who had strong emotional reactions and with whom the parents struggled to interact with. The mother noticed that the child was interested in Nagwa when they were playing together. It hooked the mother into Floortime. There was a lot of focus on emotional regulation, which is hard when they typically focus on cognitive or sensory strategies. The mother attended the sessions and started playing herself because she saw how much the child enjoyed the sessions.
The mother became very interested in DIR and read Engaging Autism. She would share what happened in school and share how it was going at home. When she saw the spark in her child and the progress, she was convinced about using DIR/Floortime. Nagwa says it’s about celebrating the process. When they shift from goals and outcomes to noticing how much the children can do and the process, they start to appreciate it and realize the approach is working. At that point, family members come on board, too.
Services in Cairo
Nagwa says that there is Occupational Therapy (O.T.) there, but there is not a school for it, so many of the O.T.s are Jordanian, Palestinian, or Lebanese. The norm when a child is diagnosed is to get a behavioural therapist. O.T.s are not as much a part of it as it should be. They do have an O.T. at Etwasel. They see the children who require O.T. services, especially in the schools. They also have many speech therapists.
Nagwa teaches the introductory course to DIR in Egypt person because most of the teachers and parents prefer to be there in person to meet others and to ask questions. She also taught the course in Jordan, as well. It’s typically O.T.s and SLPs who take the courses, she says.
Presence of Self-Advocates in Egypt
Nagwa says that there are a few Instagram accounts by self-advocates that are in Egypt, but not many. They are very helpful, especially to parents, to see examples of adult autistics.
This week’s PRACTICE TIP:This week let’s think about cultural differences and how they can impact our interactions with our children.
For example: Does your culture expect compliance from children over all else? Academics? How does the affect within your culture vary from where you live if you are living in a country different from where you had your childhood? Do you have cultural expectations for your child that make Floortime challenging?
Thank you to Nagwa for giving us insights into practicing DIR in the Middle Eastern culture. We hope you found it very enlightening and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Affect and Regulation in Middle Eastern Culture appeared first on Affect Autism: We chose play, joy every day.
If I Need Helpby Affect Autism
https://affectautism.com/wp-content/uploads/2024/03/2024-03-29.mp3This Week’s Guest
For this podcast, I step outside of the DIR/Floortime world to showcase If I Need Help, a non profit that reunites those who might become lost, disoriented, or need assistance in a critical moment with their families, loved ones, and caregivers using modern technologies in practical, accessible, and affordable ways–so providing assistance for our loved ones with communication differences. I have purchased their products since 2016 and I welcome Bruce Wilson today to tell us more about If I Need Help.
Peace of Mind
When Bruce and Erin’s son was non speaking in elementary school, he was left outside at school. Another mother saw him and brought him inside and told Bruce and Erin. The school never told them. They realized that there was a need for a product to help reunite children with their caregivers. It’s a career that chose them, rather than the other way around. Each day, they speak with parents whose children have been found after being missing who are grateful for being reunited with their child.
REGISTER HEREThe Products
Whether it’s a tag on someone’s shoes or an ID card in someone’s wallet, If I Need Help makes many products that people can use at their discretion. There are safety kits that people can buy as well, that group many items together, or you can browse through their single products:
- shoe tags
- ID cards
- pendants
- T-shirts
- patches
- bracelets
- fidget blankets
- street signs
- alerts (for hotel doors, for instance)
- …and much more! Who are they for?
The products can be helpful for children with disabilities such as Autism, Downs syndrome, Angelman syndrome, and others, but can also be used for adults with Dementia or Alzheimer’s. The individual wears or has the item on them and if they are missing, a stranger can see the tag and help reunite you with your loved one.
How it Works
Most of the products have a QR code that people can click on, or a url (on the bracelets, for instance) to link to a website profile that lists information about the individual that you have access to, where you can add as much information as you want, including a photo, or information about medication. It’s a caregiver-controlled registry. On the items themselves, you can add text such as a phone number, name, or label, such as ‘Autism’. I own patches, keychains, and the seatbelt tags, myself. I suggested to Bruce to send out an email once per year to remind customers to update their registries in case they moved or if the information about their loved one has changed.
Get the products funded!
Where you sign up there’s an area called “Additional funding companies” where you can choose the funding agency and service coordinator to have them fund the products for you. The service coordinator gets an email to start the process. If your area is not funded, you can put in an additional funding agency and put in your service coordinator’s email address and select the products you want and explain why, and an email will be sent to the funding agency requesting them to fund the products.
Free Giveaways
In order to help the most people possible, If I Need Help also has grants that allow them to give away products every year, which you can find out about via their social media or from their email list.
If I Need Help social media:
REGISTER HEREThis week’s PRACTICE TIP:This week let’s take some time to put some safety contingencies in place, even if it’s unrelated to today’s podcast. Sometimes we forget about safety issues and that a teaching a few precautions can alleviate potentially harmful situations or conditions.
For example: Does your child know what to do if they are lost? If they find themself at home alone with an incapacitated parent? If they start to choke? If there is a fire?
Thank you to Bruce Wilson for providing this service with his wife, Erin, and for taking the time to do the podcast this week. Please visit the If I Need Help website and share it with others and consider sharing this blog post and podcast on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post If I Need Help appeared first on Affect Autism: We chose play, joy every day.
Photo credit: Kat Wilcox
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This week’s podcast features returning guests, Special Educator Jackie Bartell and Speech Language Pathologist Bridget Palmer who are both DIR Experts and coaches in ICDL’s DIR Home Program, and who both teach courses at ICDL. Amy McMunn is the mother of two young adult autistic sons and a Spelled Communication Practitioner. Today’s topic is presuming competence, one of the pillars of the DIR Model and DIR/Floortime.
Presuming Competenceby Affect Autism
https://affectautism.com/wp-content/uploads/2024/03/2024-03-15.mp3Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Autistic Self Advocacy Network Guide for Parents of Autistic ChildrenI started the podcast by reading some excerpts from the Presuming Competence section on page 18 and 19 of the Autistic Self Advocacy Network’s Guide for parents of autistic children:
- Presuming competence means knowing that your child has thoughts and feelings. It means knowing that your child can understand and learn new things.
- Presuming competence also means having high expectations for your child. Your child has the potential to live a happy and full life. That potential hasn’t changed because of getting an autism diagnosis. If your child shows interest in doing something, you should help them explore that interest. You should help even if others say it would be too difficult for your child to participate. Work to make sure that your child gets the same opportunities as other kids their age. What does Presuming Competence mean to you?
To Jackie, presuming competence is an evolution. It used to be about being nice and including someone in what everyone was doing, but Jackie realizes it’s much deeper than that. It has more to do with presuming that the person in front of you has something to share, has an idea, and has an amazing capacity to experience this world, and share that with you. As a practitioner, you have to open your ears and eyes in a different way, she says.
Bridget presumes that everyone she’s with understands, and that she’s part of the relationship with them. She thinks about her facial expressions, her affect, her intonation, the words that she uses verbally or via an Alternative and Augmentative Communication (AAC) device. She wants to be attuning to the communication partner she’s with. If they’re understanding her intent to communicate, she wants to understand their intent to communicate. How are they communicating?
We are all communicating in different ways other than verbally all the time. We never want to think that because someone isn’t talking that they don’t have something to say, or that they don’t have desires, wishes, and ideas. There’s lots of ways to convey information, Bridget says. How does someone let you know what they understand and let you know their ideas?
Bridget’s presuming they can be a communication partner, a friend, and be in the world as themselves the way they are, respecting who they are, and she’s listening to adult self-advocates, whether they’re typing, using AAC, or using spoken words. She will listen and presume their competence in their relationship with her.
The Lived Experience of Presuming Competence
I am thrilled to have Amy on today since I feel ill-equipped when I discuss non speaking individuals or AAC because I don’t have experience with it, as my son has almost always been very verbal. Amy starts by thinking about the topic of presuming competence. She says that thinking back on her journey, this was the last thing that parents were told to do or taught to do. It was the last thing that was every modelled.
Amy spent most of her son’s younger years trying to ‘fix it’. It was in the early days of Defeat Autism Now (DAN). There were DAN doctors, allergists, nutritionists. She saw them all and tried everything. They didn’t tell anyone their son was diagnosed so he wouldn’t be labelled. They piled on therapies and interventions to change and get them out of the situation.
More recently, Amy’s sons have come into young adulthood and have developed their own identities. One of her sons is a proud member of the neurodivergent community who educates her daily on her missteps and she is so grateful to have a different perspective on it all. Along with the diagnoses, Amy continues, there have been problems because her sons have been made to live in a world that didn’t presume competence, did not understand their diversity, and didn’t respect them as individuals.
Amy’s older son is a nonspeaker and communicates using a letterboard. She didn’t think he could do that. She didn’t dare hope. She had glimpses of it when he was 11 or 12 years old. Their old school speech therapist told her that if you boiled speech down to very basic elements of Yes and No, you could get communication, and she did with Amy’s son. She gave Amy a list of questions she asked her son and the answers he gave her using the Yes and No cards. He knew what a checking account was, who the president was, what yellow fever was, and knew geography. Amy got into her car and cried.
Amy was eager to try it herself and went upstairs one day after school. She wondered what to say for the first time to her child. She asked if he was happy. He said yes, maybe more to brush her away. This was the beginning. A couple years later they found their way to Spelling to Communicate. He’s had a long road, Amy laments.
Living in the Damage
Amy asked him what her older son would want to say on this podcast and he gave her permission to share this information about him. She feels part of presuming competence is about not oversharing information without his permission. He said that he is traumatized. He doesn’t feel as though he’s capable of anything or been successful in anything in his life. He has a bleak look of the future.
Amy’s trying to help him with processing two decades of being told where to sit, where to stand, and how to feel. He wants people to know that everybody deserves a chance, a voice, a future, and a right not to be left in the corner of the room to rot. Amy feels that this is his experience, unfortunately.
When he graduated at age 22, after having an extra year due to Covid, Amy was at the school. As his teacher was gathering his things, she told him he needed to “go potty“. Part of presuming competence is not telling a 22-year-old they need to go ‘potty’, Amy says. She stood there horrified as 5 to 10 people were in the room and he was being told where to go, what to do, and to sit on the toilet, completely exposed in front of these people. She vowed that over her dead body would this be the rest of his life. We’ve gotten it wrong, Amy says.
Amy now sees her son in burnout with mental health and self-confidence concerns, all because of the way society has programmed him. To her, presuming competence is a very personal thing. She’s watched the story play out in front of her and seen her own role in it–her evolution in it. Right now, they’re living in the damage of it, she admits.
Opening that Space for Presuming Competence
I feel for the situation that all of Amy’s family went though. I feel for Amy as a mother wanting to do what she thought was best, not knowing how, not being equipped, not being supported, and obviously for her son who has been in the circumstance that she described. I feel grateful for the neurodiversity movement that has taught us so much. I feel fortunate that my son was born later and that we have access to this new information.
In ICDL’s parent support group that I facilitate weekly, there are parents of very young children using AAC as very young children, which is a newer thing that is slowly becoming more mainstream. I know and see many kids who are my son’s age who are nonspeaking who have never been introduced to AAC. I struggle with that–who am I to tell them what to do? At the same time, I think they would appreciate the information.
Jackie says that a space has been opened because of the neurodiversity movement, and because of this opportunity to be able to communicate with her son and the embracing of ‘he can’–a space that might otherwise not have been opened up. Without the notion of presuming competence, that may never have happened.
When Jackie interacts with neurodivergent individuals, she has to work really hard with herself to remember that the person before her has the capacity to communicate and deliver ideas, and she has to change what she’s doing to receive that information. How do we attune to that person so we give them the space? She can be in a position to be comfortable to say, “I don’t know, but I can be with you so we can figure it out“. She has to change what she’s doing. That’s the important piece. That’s when we start to move forward.
Presuming Competence in Communication
Bridget thinks about communication and each of the parents she’s spent over 20 years with. They might not yet know how to build a communication system to support the family, but we know we can support communication. There’s lots of ways. You can use a voice output device, photographs, sign language, pointing, leading by the hand, watching eye gaze, tuning into what they’re going. A multimodal communicator–which is what we all are, all of the time–is what we want to encourage, Bridget says.
If we don’t know what those systems are, we can be curious and explore, Bridget continues, but we first observe what the person is interested in, what are they doing, how are they responding to you, and what they are letting you know. They’re letting us know and we tune in to what that is. Let’s think about the opportunities of what systems are available and how we can use them and really be available to be a communication partner, understanding what it is like to be in communication with someone else.
How do you tune into the other person, respond to them, build reciprocity, and get into that opportunity for shared social problem solving? What do I do if I don’t understand Jackie’s message? Bridget says that she’s going to stay with Jackie until they get to a place where she can understand, or they both decide something together. You do that by being engaged, connected, persistent, and by presuming competence. We also respect when someone doesn’t understand us and wonder how else we can convey this message and clarify, Bridget says. How can we think about the opportunity for repairing the communication?
Autistic Masking and Neurodiversity
I referred back to the autism masking podcast with Kieran Rose and Dr. Amy Pearson. They talk about a lot of what our guest today Amy discussed: burnout, mental health issues, trauma, and the cost of not presuming competence and not supporting autistic people. It really strikes me how much this impacts people –having the ability to communicate. Communication is certainly a large part of presuming competence.
Today’s day in age, Amy loves that there is a change in the wind in the neurodiverse community where they are taking ownership and pride in their neurodiversity. It’s such a change from doom and gloom. We have so many examples now of neurodivergent individuals–struggles and all–exuding pride, and she is so happy her sons will come into their adulthood into this new world.
Spellers
Now that Amy is a Spelled Communication Practitioner, she’s sharing what she’s learned and helping others. Her caseload mostly consists of adults in their 20s and 30s. The parents were told all the same things that she was, and yet, they found a way. You find a way, Amy says, like Bridget said, to communicate. Whether it’s taking your hand and leading you, or some other way. Amy loves watching the love between caretakers and the neurodivergent individual in their lives.
It’s been an extreme joy for her to help her clients show that they are thinking and have lots of opinions and abilities. The world has gotten it wrong, Amy declares. She considers this opportunity a very special place. It’s a full circle moment as someone helped unlock her son’s thoughts and taught her to approach him differently. She can now do that for other families.
Jackie says the notion of presuming competence plays across everyone involved, including for the caretaker to communicate with their loved one in a different way. It’s been a beautiful thing to watch.
Changing Ourselves
Jackie mentioned that presuming competence is more about changing yourself and it’s been what I’ve been working on with my own son who is a teenager now, but whom I’ve continued to think of as a younger child. Like many parents of children who have gone through medical trauma, I just want to do everything for him and not see him struggle, but it’s doing a him a disservice to not foster independence.
I also wanted to bring up the topic of boundaries, and having a way to set boundaries in an appropriate way. Jackie says what’s important here is that we don’t want to force people to do things they’re uncomfortable with. That is part of the presumption of competence. We want to assume competence about intellect and emotional competence: that the person before us has the capability to articulate their emotional experience and that we have to honour and respect their emotional experience even if it doesn’t fit with what our bigger plan was.
Skewed Expectations
Jackie warns that if we’re not careful, what Kieran Rose and Dr. Amy Pearson shared with us can happen–that we can be forcing people to be doing things that are very icky and painful. This brought Amy to discuss her younger son who is 20 years old. He has a lot of great and articulated speech, ADHD, and a profile called Pathological Demand Avoidance (PDA). A lot of PDA individuals have trouble with school and don’t attend school. The traditional school model doesn’t work for them.
Talking about presuming competence, this was not a matter of him ‘not liking’ school, Amy states. It was a matter of his nervous system not being able to do this. She watched the sparkle in his eye and the joy for life that he had be extinguished. He’s so damaged from it. He went into burnout. He researched it and told Amy about it. It didn’t fit in her plan to be a homeschooling mother, but that’s where they ended up. She’s been homeschooling him for over a decade.
Presuming competence, Amy continues, looks different with each of her sons. While it’s the same thing, it looks different. The labels of ‘low or high functioning’, ‘profound’, or ‘severe’ are so damaging. Imagine being in the label ‘low’, ‘severe’, or ‘unable’. Imagine what that does to a person. Her younger son is in the category of ‘high’ and everyone assumes that because he’s ‘high functioning’, he should be able to do x, y, and z. The pressure is incredible to him, she shares.
Presuming competence is to say that we expect someone to know their own limits, and if something is crushing to you, then I will validate that, and we will find a way, Amy says.
Understanding our child’s limits
It’s not about “I don’t want to” but it’s rather, “I literally cannot do it“. I wondered how a parent teases apart what our child can do but just doesn’t want to, versus when they actually really can’t, and as Jackie said, you can’t always trust the speech as kids often say what is expected of them. I think the clue is in the behaviour.
Bridget says that there are situations where neurotypical people don’t want to do something which is a very big difference from not being able to because your sensory, emotional, motor, or communication system is actually inhibiting or interrupting you. There are adult autistic people who say they lose the ability to speak or use their body. If we’re presuming competence, we’re attuning to someone, we’re respecting them and listening, watching, and noticing, Bridget repeats.
Bridget says that there’s a reason for school refusal. We know that there are systematic things in school settings that don’t support our neurodivergent loved ones. The systems are flawed. If we are listening, observing, and attuning to the people we love, they are telling us. If they have a stomach ache every day, there’s a reason they have a stomach ache every day, Bridget continues. Relationships build on security and safety. These safe relationships might be at home or in another learning environment. Trusting what the person is telling you is important.
That’s where there’s a fine line, I added, and a danger in the term presuming competence because we don’t want people to have the idea that you are competent and can do it the way people assume that someone labelled as ‘high functioning’ has competence and ‘should’ be able to do something. Although presuming competence means that someone has competence and the capacity to have feeling, thoughts, wishes, desires, and abilities, we don’t want to be the one who commands that on demand. We want them to have their own agency.
Amy says that it’s establishing that intuitive connection with another person. That is what she’s doing with her boys in their different situations. Validating who they are. It means listening, Jackie adds, in all of the components beyond just what they say. That’s why this is not a ‘do this’ or ‘do that’. It’s understanding who the person in front of you is and understanding their entire profile. There’s so many facets to how they communicate. It’s understanding that the other person has an emotional life, and that I’m going to be respectful of that.
The Process
As I’ve discussed in other podcasts, we talk about process-oriented learning in DIR. It’s so important to involve our children in the process. Presuming competence doesn’t mean we don’t offer support. We empower somebody with support. We support our child’s potential, but this will look very different depending on the child’s age, individual differences, and their developmental capacities.
Jackie says that sitting down and having a conversation is such a lovely way of presuming competence. You’re opening up a space to understand what’s happening. In the podcasts about feeding we covered how you can involve your children in meal planning so that when you have the meal and they say they don’t want it, you can say, “Hey, wait! You picked this out!” versus doing everything for them. Involving our children in planning their own lives and making decisions about their own lives is part of presuming competence.
Amy says the skills questions in a test she’s done with her 22-year-old have never been asked before in his life. They include such questions as, “Who is your support system?” The curriculum leading up to his graduation was, “What kind of clothes do you wear in winter?” There was nothing about planning your own life, Amy shares. The first time he had to answer these questions, he didn’t know what to do. He shut down. We are living in the trauma now, Amy said, because of the lack of presumption of competence.
When I interact with the parents of children 10 years younger than my son in ICDL’s parent support group, I tell them what I would have told myself 10 years ago. I brought up how Dr. Gil Tippy talks about how he sees such blossoming in young adults in their 30s and 40s. There’s always room for potential and growth.
A Strengths-Based Approach
The trauma piece is something that’s very, very difficult. I’ve not done a podcast about it yet because I feel like I’m not worthy of having that discussion, but it is important to go through these things. It’s something that will be a long journey to unpack, building the golden building blocks of who you are, what you feel pride in about yourself–working from strengths and building from the strengths. It’s a good place to start. Bridget says that when we think about bringing out the best in someone, it’s presuming competence.
If you’re holding confidence, comfort, control, communication, and connection in mind, Bridget continues, and you’re in a relationship with someone else where they feel safe and secure, then you can have those conversations. You will have the opportunity to think about connection and what it feels like to be understood, take a risk, try new things, and do the things that you do so well. When Bridget shared ‘presuming competence’ with a mother of a 3-year-old client, the mother said that nobody ever shared that with her before. It had felt like a lifetime to that mother where nobody had said that to her. We can say, “I see you. I can’t wait to hear what your ideas are.“
Points to Remember
Speaking to someone as if they’re still a young child tends to be what people tend to do with different types of disabilities. Being able to educate people on speaking to others as equal human beings is important. Jackie adds that it’s important that we reflect back on ourselves about why we infantilize others. She thinks it has to do with discomfort, lack of understanding, and a need for control. In her profession, teachers are supposed to teach, and children are supposed to learn by being compliant about what the teacher decides what is important.
The teacher is the controlling force. If she lets go of that control, there’s potential for chaos, from some people’s perspective. But Jackie says that this can be a space for people to learn and grow together. She suggests asking ourselves what need we are meeting by interacting in these undesirable ways? It sits in that space of control, she believes.
Amy adds that one of the important principles she learned when training to be a Spelled Communication Practitioner is that when presuming competence, you should apply the least dangerous assumption. When there is an absence of conclusive data, you make decisions on the assumption that if you are incorrect, you will have the least dangerous effect on the person’s mental health and ability to function.
She is learning it every minute of every day, she says. There’s no ‘a-ha’ moment. She’s learning along the way. She is reminded everyday that she is not neurodivergent, as she is reminded by her younger son. He says to her, “Are you sure you aren’t approaching that in a neurotypical way?” Bridget loves this and will hold this in mind.
This week’s PRACTICE TIP:This week let’s stop and reflect on how much we presume about our children. Are we presuming independence and providing agency? Are we presuming competence?
For example: Let’s make an assumption that our child can do something that we did not imagine or think to presume and look for signs that it is possible. Let’s attune to them and change what we are doing, ourselves, to receive their ideas. Let’s be comfortable in sitting with them to figure it out.
Thank you to Jackie and Bridget, and especially to Amy and her sons for sharing their story to help spread information to others about presuming competence. We hope you found it very enlightening and will consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Presuming Competence appeared first on Affect Autism: We chose play, joy every day.
Photo credit: Vika Glitter
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This episode, returning guest, Occupational Therapist, Stephanie Peters, DIR Expert & Training Leader and Clinical Director with Kinder Growth discusses the developmental considerations around sharing.
A Developmental Perspective on Sharingby Affect Autism
https://affectautism.com/wp-content/uploads/2025/03/2024-03-01-Sharing.mp3Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!A Closer Look at ‘Sharing’ Goals
The idea for this podcast came up when Stephanie’s more behaviourally-minded friend was visiting Stephanie’s two-year-old and asked her for the crayon she was holding. Stephanie’s daughter clammed up a bit and held her it, not wanting to give it to her. The friend responded with, “Aww.. I’m so sad!” When the child finally gave her the crayon, the friend said, “Thank you for sharing!” and said it again when she left and said good-bye, adding, “It made me so happy!“. It made Stephanie think about the social expectation that we have for kids.
When we teach social skills, in general, Stephanie says, there’s generally a sharing goal, but the whole experience just felt so ‘clunky’ that she needed to look at it with her DIR lens. I shared how I went through Dr. Gordon Neufeld‘s courses when my son was young, and that’s one thing that was stressed all the time: meet children where they are developmentally. You can’t expect a two-year-old to share. Sharing comes later. They’re still forming their sense of self at two years old.
It got Stephanie thinking about what is tricky with this. The notion of teaching sharing by saying you’ll be sad if you don’t share, and happy if you, do creates a system of feeling like if you don’t share, the adult will be mad at you or not like you, and happy if you do. It made Stephanie wonder about many things:
- What about what the child thinks about sharing?
- Why does the child need to share?
- What’s going on in the child’s mind?
- How can we connect with someone if you don’t want to share?
- How can we set boundaries if we have to share?
- How can we be more developmentally-minded to support someone intrinsically being interested in sharing with another human being? The Emotional and Praxis Components to Sharing
I shared how Dr. Gordon Neufeld talks about how young children are really only experiencing one emotion at a time until their prefrontal cortex starts to kick in. Then you can begin to mix your emotions, but that’s comes in the later Functional Emotional Developmental Capacities (FEDCs), along with theory of mind. At age two, you might still be all only in your own mind, not able to take another’s perspective. Stephanie adds that the child might see that you’re mad if they don’t share, but do they understand how that affects them? In DIR terms, there was only one circle of communication expected which was asking for a turn, then the child giving you the object. There was no space for emotional processing.
When you ask the child to share in this way, there’s no time given to process the cue, Stephanie continues. And what about praxis: supporting the child’s plan? How do we help the child figure out how to respond to you? What does the child do next once they give you the object? Sometimes we hold on to something because we don’t know what to do next, in general, in life, Stephanie emphasizes.
When someone asks you to share and forces you to share, you’re not supporting the person. We’re not supporting that they might feel confused or stressed, or are holding on to the object because they don’t have a plan and it’s grounding them in the moment, Stephanie says. Once you take it away, the child is left with no plan, they think you are mad at them, and they will be stuck and more disengaged.
The Relationship Component to Sharing
There’s so much more that needs to happen in that moment, Stephanie continues. As a parent, trusting that if they don’t share this time, it’s not setting the expectation that they’ll never share. There’s a fear that if you don’t share, you’re teaching them it’s ok not to share. It’s exactly what parents are worried about, I responded. We’re also worried about judgment from other parents that I’m not teaching my child how to share!
In the moment, Stephanie’s friend asked for a turn, but Stephanie’s daughter had a stress response. She didn’t want to give the crayon to Stephanie’s friend. Stephanie thinks about so many things: Why do I have to give this to you? I don’t want to give it to you. I don’t know what to do next. I’m not ready to give it to you. Give me a second to process what I’m doing so I can think about a plan. If we don’t give that processing time, Stephanie urges, the child may clamp on tighter and get dyregulated, disengaged, maybe cry, and disconnected.
Then what do we do? We say you have to give it to me, Stephanie says. We are basically telling them that they have to have discomfort in the comfort of giving your things away! While there is power in building comfort in the discomfort, Stephanie stresses, it has to come with the foundation of connection to ground you, otherwise you’re teaching the child that the world is unpredictable, you will never feel safe, you will constantly be ruptured in your relationships with no option for repair, you’re not understood nor supported, and your stuff gets taken away! Your response will have to be a fight/flight/freeze response!
And what does this do to the Relationship? Not unique to Dr. Neufeld as it’s just developmental psychology, he says that you really are rupturing that relationship when you are essentially making threats like implying that if they don’t give you their toy, you’ll be upset. Stephanie agrees as she imagines being in that position. Why is this person doing this to me–taking away my prized possession? It must come from connection.
What does it mean to share?
There’s so much to unpack about sharing for a child. If we think about meaning making, understanding what sharing involves includes understanding the perspective of another person, which only just starts at the fourth Functional Emotional Developmental Capacity (FEDC). Yet, Stephanie adds that if you look at every social skills section of any IEP, there’s always a sharing goal. It’s a way to measure someone’s capacity to be social, but it’s a very black-and-white way of thinking about it. It’s very complex.
When we teach somebody to share, Stephanie says, we can instead help somebody think about connection and what it looks like. We can talk about sharing experiences, things, attention, smiles, moments with someone. If you get two people in a room, especially two two-year-olds, there are bound to be some conflicts, but we can support that experience by having a million different moments that will lead us to understand that there is a reciprocal nature to interaction, Stephanie offers.
If someone wants something from you, you can say, “No“. You can say, “I’m not ready yet“, “I’m still playing with this“, “Give me a minute“, or “I’m really enjoying being with this. Do you want to look at it with me?” It doesn’t have to be that I give it to you and I’m alone in this moment, Stephanie explains. There’s a huge gray area that supports healthy relationships in the long run, she insists.
The goal is to share moments of connection with somebody.
Stephanie Peters, DIR Occupational TherapistHow to Foster Sharing
You can certainly do a lot more with a child who is further along in their developmental capacities, I added. You can negotiate: “Your friend really wants to play with this, too.” With a younger child, maybe they can’t understand that. I asked Stephanie what to do if parents have a child who refuses to share and maybe there are conflicts with siblings when they want the same toy. How can we foster sharing?
Certainly when we’re promoting our child’s FEDCs, it will come in time, but it made Stephanie think about a client of hers. There may be two siblings in the room who have two different profiles. Thinking about the first FEDC, Self-Regulation and Interest in the World, we can wonder what is making it so tricky. There’s probably a very long list, she says. First, as an Occupational Therapist (OT), she thinks about how praxis–the ability to come up with a plan and figuring out how to interact and connect with someone–is a big thing.
An adolescent would take his two-year-old sibling’s toy and it would end up with them arguing and became more physical, Stephanie explained. The parent said that they can’t keep separating the kids or taking away the toys. So in that situation, thinking about the first FEDC and supporting ideation, Stephanie took away the pressure of ‘toys’ that required more ideas (i.e., more pretend play type of toys that require a lot of praxis energy because you have to think about what you do with it, what comes next, how to involve somebody else, how to share your ideas, etc.) and said we lean more towards tactile sensory play where there are multiple ‘things’, and the fun and the play becomes experiencing it together.
The shift is that it’s not about separating; it’s about how we get everybody closer together. And how do we support more connection, which will allow for more opportunities to feel comfortable and build safe Relationships when we’re in the same space, getting used to somebody’s individual differences, getting used to how they send cues, and feeling like we can be successful together.
Stephanie Peters, DIR Occupational TherapistRather than sharing the item, we’re sharing the moment, and connecting in the joy of how this feels in our bodies. The parent said that it’s actually working! Stephanie says that it’s hard to do because it takes a lot more planning. It takes time and energy to set up and put in place. It takes time and effort to support the interaction between the siblings, but it was helpful and set up the regulation pattern for the rest of day.
The Experience of Connection
We talk about different stages of play where babies will start with sensory experiences by putting things in their mouth, and some of our kids do that well into elementary school years. Then we get into object play where it’s about cause and effect. Let’s throw things off the bed and see what happens. Let’s pop the water balloons and watch them splash. Then we get into imaginary play where we start with simple sequences, which then develops into more emotional themes, bridging sequences in their play, but that experience of sensory play doesn’t mean you’re going backwards if you’re already in symbolic play.
It’s fostering an experience of connection where you’re learning to be with another person–with whom maybe you’ve had a hard time being with–so that two siblings can enjoy something together rather than fighting with each other. Once they realize they can have fun with each other, they will likely want to replicate that experience.
Stephanie says that everybody needs that experience with another person, unless we’re developmentally moving backwards. If she had to do her taxes with her husband everyday, she might feel stress with him and feel like it’s hard all the time to just be with him. Play is how our nervous system feels safe, aligned and connected. It shouldn’t always feel like work to do. It may take a lot of effort to ‘take it down’ to where we want to just feel good with somebody, she says, but that’s the joy of connection.
Even in businesses, they do team building activities all the time to foster this connection, I added. Stephanie responded that in a work situation, it’s really important to see someone else’s perspective, to share ideas, and to share the things that are really important to you. There are conflicts all the time in the workplace. The higher developmental capacities (FEDCs 4, 5, and 6) require the ability to feeling safe with someone, knowing that you can work something out with them in order to take their perspective so you can see what they want you to be doing without feeling like you are in shut down or being misunderstood, Stephanie explains.
That doesn’t come just because you’re a grown up and your brain is mature. It comes from a million micro-moments of getting to know somebody, and setting that culture of figuring it out, understanding each other, and being with each other, Stephanie continues. It seems straight forward when we think about it in our own experiences with other adults, I shared, but we somehow forget about it when we think about children, because we are always thinking about teaching them so they can learn. We forget that idea of process-oriented learning that can take years.
Walking through an example
Stephanie shared another example. A family was able to put a swing in their home, but there were two kids. There were a lot of opportunities of what to feel when both kids wanted the swing at the same time, Stephanie explained. There is no right or wrong answer. The thing that experience offered Stephanie, she said, is the necessity sometimes for grown-ups to be the anchor, or the safe person to set boundaries, to help everybody feel heard and understood and help everybody figure out what the best solution is. In thinking about a swing, it’s about helping somebody identify why you need the swing, why the other person needs the swing, and validating that the child seems to really, really want the swing.
You can say something like, “I wonder if I could…“, giving the child a different plan in order to feel connected and supported in their regulation while we’re waiting for someone else to finish on the swing, Stephanie offered. I shared that this is where my son is at. As long as he’s engaged, socially–and he’s very social, all is well. It’s when that attention is diverted to someone else at school–because he is an only child and gets all of my attention at home–that he doesn’t know what to do and that’s when we will see some behaviours such as knocking something over, or taking another child’s object.
OT Maude Le Roux had shared with us that this is when we can give him a task while he’s waiting because it’s that down time that makes it hard for him–that praxis component. Give him a job to do so he has something to be focused on. I asked Stephanie what another way to do that is, especially with non speaking children or children who may not understand how to process why they or the sibling needs the swing. Stephanie says that if one person is playing with something and it looks like fun, everybody wants to do it.
Co-Regulating Through Connection
The challenge of sharing, especially with someone who has challenges with coming up with ideas, Stephanie points out, is that when they see someone doing something, that gives them an idea. They see how the other child did it and they want to do it, too, coupled with the memories that it makes their body feel good. So, Stephanie explains, they meaning of this activity is that they have an idea. They’ve done it before.
They know it feels good, so their mirror neurons are firing as they see the other child doing it. They make a plan. That’s what they want to do. When that stops because someone else is having their turn first, they fall apart because they’re not supported in the other areas, Stephanie explains.
Stephanie offers that it’s a combination of acknowledging the child’s plan. This was your idea. I see you looking at this person. They have this toy. They’re swinging. You look so excited to do it. Despite the spoken language capacity of the person we’re talking to, Stephanie explains, you can still validate their idea, what they’re thinking and feeling, and slowly shift towards offering a new idea and experience–that you can hopefully think of on-the-fly–that supports their body, knowing that this is also going to feel good, and give them something to have a new plan for, until this other option becomes available again.
So, if the swing isn’t available, maybe we can experience the disappointment, the frustration, validate the plan, and then offer space and connection, Stephanie continues. “I wonder about (doing this task)“, “I noticed that…“, or, “I wonder if we could dance together instead“, thinking about what feels good to them. We tailor the next idea to support their regulation, which will help them be able to wait longer, come up with their own idea, stay available for connection, and initiate a circle. Maybe when they notice the other child coming off the swing, they can go try it, or maybe have a different idea of what to do, Stephanie shares.
Providing Comfort through the Discomfort
I offered a few ideas, such as having a transition song if your child is musical or enjoys songs. You can sing a song while the child is waiting, so now you have two things that are fun: the swing, and singing with the adult while waiting for the swing. You can use visual prompts that can help the child understand that first it’s your turn, then it’s brother’s turn, or whatever, representing it visually. You can have stations of activities that are fun, set a timer and making it fun by shouting, “Switch!” in a funny way when it’s time to transition between the stations. Putting in structures can help make it more predictable for them, I suggested.
Stephanie agrees that we can add fun and give off the vibe that we’re going to work it out and that this is our system. But Stephanie advises practitioners and parents to slow down on offering the solutions. Our solutions can go really fast, she says, and that doesn’t help. The child is still thinking about what’s happening over there. How do we support their bodies so they can process what’s going on? You can try, “Come sit next to me. What’s going on? I noticed that you’re really excited about that swing. Not yet, but it’s almost time for your turn!” Give them time to process what they want to do, Stephanie urges, because that is more time for us to stay connected.
I said that it’s especially helpful to slow down for older children because they’ve had patterns for years. Helping them get to that understanding might take a bit longer, breaking out of old patterns. Stephanie emphasizes that FEDC 1 is about getting to a place of being curious about the world. We get dysregulated because our plan is stopped and we don’t know what to do next, and that doesn’t feel good. But when we can be grounded in our relationships and our connections, and be able to stop and stay curious about what’s happening, that will allow someone to get another idea, or stay comfortable, Stephanie says.
It’s having comfort in the discomfort. “I don’t have another idea but it’s ok because I’m still processing what’s happening. When I’m ready, that idea will come.” Then they’ll be in a place to pay attention when the adult might suggest, “Let’s go jump on the trampoline while we wait!” It’s understanding that someone’s telling me something to begin with (versus not hearing them or processing what we hear when we’re still dysregulated).
Stephanie summarizes by saying that we want to focus on connection, keep in mind those Individual differences–especially around praxis, and work on slowing down–especially when our children are calm and regulated. Allow them to sit in that stretched rubber band challenge just enough to get used to that discomfort and what we can do about it. By working on this when we are calm and regulated, we have more experience with it for the times when we’re dysregulated.
This week’s PRACTICE TIP:This week let’s foster connections around shared experiences.
For example: Does your child seem ‘possessive’ of their toy? Let’s foster connection around their toy by joining the child, showing interest in the toy, and if possible, grabbing our own similar toy to play together to share the experience of the toy with them.
Thank you to Occupational Therapist, Stephanie Peters, for sharing her thoughts and insights on a DIR perspective of sharing! We hope you found it very enlightening and will consider sharing this post on social media!
Until next time, here’s to choosing play and experiencing joy everyday!
The post A Developmental Perspective on Sharing appeared first on Affect Autism: We chose play, joy every day.
Photo credit: Tara Winstead**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This episode, Speech Therapist, Sabrina O’Keefe, DIR Expert & Training Leader, discusses Gestalt Language Processing within a Developmental, Individual differences, Relationship-based (DIR) framework, which listeners have been requesting for a long time!
Gestalt Language Processing and DIRby Affect Autism
https://affectautism.com/wp-content/uploads/2024/02/2024-02-16.mp3Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!What is Gestalt Language Processing?
Gestalt Language Processing is synonymous with the terms scripting or delayed echolalia. Sabrina says we’re learning more about it as we are privileged to hear the lived stories of autistic adults who are talking about how they developed and learned language. The term is not new, Sabrina continues, as it was talked about decades ago by Dr. Ann Peters, followed by Dr. Barry Prizant and then Marge Blanc. It’s a way of naming how someone acquires language, Sabrina explains. You can either be a Gestalt Language Processor (GLP) or an Analytic Language Processor.
Scripting is pretty self-explanatory. A child will use a script from an emotional meaningful experience, which can also be from movies or videos they’ve seen. As Dr. Barry Prizant says on his Uniquely Human podcast regularly, scripting cannot be dismissed as meaningless speech, which was kind of the norm still when my son was diagnosed over a decade ago. Scripting is meaningful communication.
Echolalia has two forms. The first is immediate echolalia where you say something, and the child says it back. Typically, Sabrina explains, when a child communicates like that, we tend to wonder about comprehension. A delayed echolalia occurs when a child pulls an echo of something they heard before into a current situation. It’s the unit of language that was important in that moment of life to represent that feeling, Sabrina says. That is a delayed script, a delayed echo, or a ‘gestalt’ that they pulled out to talk about what is happening here and now.
I wondered if there were different types of scripting, too. My son recites lines from the Super Mario movie playfully, repeating lines from the movie to connect, or to amuse himself. Other children, some who may be non speaking, will recite a movie script. If the parent attunes to that script, they will realize that it’s a line from something that happened that has the same emotional content to what’s happening in the current situation.
The ‘Gestalt’
Sabrina says that the idea is that you pick up these units of language, these ‘gestalts’, from your environment. The current language environment is media and media scripts, whereas in the 1970s you were typically drawing language from interactions with family, from peer play, or from observing the environment. Dr. Ann Peters would say that a ‘gestalt’ is a unit of language, Sabrina continues, which can be simply one word, or up to a 5-minute dialogue.
When a ‘gestalt’ is being used meaningfully, it’s usually a way to connect with another person, Sabrina says. We want that reaching out/engagement/connection, and we have to be good detectives to figure out where it is coming from, and what emotion is connected to that, she continues. But we do want to move those kids forward from using those long media scripts, or ‘gestalts’, because they’re tough to carry around and use as you grow, she explains. Why GLP is so exciting now is that parents and therapists are learning about how to be the best language providers for kids.
Marge Blanc’s Natural Language Acquisition (NLA) describes a way of moving a child from delayed echolalia, or the use of ‘gestalts’, to the use of spontaneous language, so we take that script and make it spontaneous, Sabrina explains.
Assessment of GLP
When Sabrina first gets a client, she puts on her DIR/Floortime glasses and waits, watches, wonders, and listens to see what Individual differences the child in front of her presents with, and one of those Individual differences is how that child is acquiring and using language. She also pays close attention to the child’s parents who might say things like their child likes nursery rhymes, that they love the intonation patterns of songs, or it sounds like they’re jabbering away to themselves. Sabrina calls GLPs ‘intonation babies’ who are drawn to the rhythmic nature of language.
It sounds like they’re having a conversation with themself, but when you’re little, you don’t really have an understanding of language or word boundaries, so you try your best to copy what you hear, but you don’t necessarily get it all, she explains. These bits of history help Sabrina figure out what the child is responding to and what models light that child up. That bit of history guides her thoughts on figuring out if they’re a GLP, an analytic language processor, or a bit of both.
An analytic language processor is typical language development where a toddler will start referencing and will say, “Mommy” as they point, for instance, Sabrina explains. Then, as they grow, it will become, “Mommy… sock” and then as they grow again, it becomes, “Mommy… sock… me!” That sentence keeps growing, whereas the GLP won’t use single words in a referencing kind of way. They’ll tend to use intonation patterns, or longer ‘gestalts’ that can be socially completely functional. We use them all the time: “Hey! How’s it going?” or “How are you?” It’s a great chunk of language we can use, Sabrina explains. Sabrina says that she pays attention, plays, plays, and plays, and keeps listening, listening, and listening.
I asked Sabrina how we differentiate non speakers from early speakers and those who might become verbal later? She said that there is a big movement about providing GLPs with appropriate messaging on their devices such as phrases, rather than combining words to form a sentence. Instead, give them a larger amount of language which matches their learning profile. Sometimes we might try something for a long time and it’s not working, so we might try to go a different way. There’s always clues about how the child’s interacting at home, if they’re drawn to melody, etc. Maybe this is how my child is acquiring and processing language. It’s worth wondering about, Sabrina says.
The Stages of Language Development
When you have an analytic language processor starting with a single word, adding a word, then growing, this is Stage 3 in Natural Language Acquisition (NLA), Sabrina explains. The first stage of the GLP is the use of the ‘gestalts’. A client of Sabrina’s stage 1 ‘gestalt’ was, “Mama called the doctor and the doctor said“, which was his way to communicate that he wanted his Mom’s phone. The problem is that it’s pretty long, Sabrina explains. In Stage 1, we want to give children ‘mitigable gestalts‘, which means breaking them down into simpler ‘chunks’. If the ‘gestalt’ isn’t mitigable, it is really ‘Stage 0’ and we have to teach them a new one in Stage 1 that is mitigable, or break-down-able, Sabrina says.
Sabrina might say something like, “Let’s find it!” or “Let’s look!“, which is something that can be broken down so that in Stage 2, you can mix and match them. “Let’s find it!” becomes, “Let’s buy it!” or “Let’s play with it!” or “You find it!“. You get more flexible so that you can then get to Stage 3 where each word becomes meaningful and “let’s” can stand on it’s own, “find” can stand on it’s own, and “it’s” can stand on it’s own. Here, we start to see the similarity between the GLP and the NLA and can reference the “sock” in their environment, Sabrina explains.
Promoting Language Development
The tricky part is that we have GLPs who are amazing at saying things like, “I want” where rote language has been taught and memorized, Sabrina continues. They have a bevy of single words that they can’t do anything with. They can want something but it doesn’t break down to anything else, so they are stuck with their stuck language patterns. Here is where you have to go back to Stage 1 and 2 in the Natural Language Acquisition (NLA) to give them more vocabulary, so they can mix and match to then combine the single word with grammar to then become spontaneous in their language, Sabrina explains.
No two children are alike, but there are the general trends that Sabrina mentioned. There are children who chunk words together in a script, they ‘mark’ it with an emotional meaning, then match it to something in the present. We want to have them be more flexible with their language in order to help them communicate, Sabrina says–the goal of speech therapy.
Give them more vocabulary, or building blocks. Sabrina says it’s about increasing the flexibility and use of different types of language across environments, and with different people, to be understood. We always want to expand and grow so you can interact with more people in different environments, Sabrina continues. They can continue to use ‘gestalts’ as they get older, but as they move forward, they’ll start to look more like analytical language processors.
Determining Where the Child’s Language is At
There’s always going to be a mix of being both a GLP and an analytical language processor, Sabrina explains, just like if you are a Stage 2 in language development, you’re not 100% in Stage 2; you’ll be ‘primarily’ in one stage. When a client has enough ‘stuff’ in one stage, Sabrina will start to model the next stage for the client. It’s all about the partner and about the input that we’re giving with our language, she says. Also, there’s no demand for the child to repeat. It is just a matter of giving them the next type of language for their vocabulary brain to start to organize and use, so that when it’s appropriate, they can use it powerfully and spontaneously in environments that make sense, Sabrina shares.
This is not that dissimilar from DIR, where we’re not necessarily in one Functional Emotional Developmental Capacity (FEDC) or another–we’re jumping around–but, we are primarily in one as we continue to progress. When you’re older, you have the flexibility to go back and forth up and down the capacities. The onus is on us when they’re younger. We want to foster that foundation early on. We all script as adults, but we have the flexibility to use more typical language as well.
Sabrina says you have children who might be ‘stuck’ regurgitating memorized remote words or phrases that they may or may not have meaning for, along with the scripts they use. It might be harder for these children to progress versus when the child has adults around them who understand that the child scripts meaningfully when interacting and who can, accordingly, help the child build their vocabulary with ‘mitigable’ phrases so the child can communicate more as they get older.
Matching our input to the child
Sabrina says that in a DIR world, you want to provide the correct input to match the Individual differences of the child. Maybe you’ll be most regulated when you’re moving, or in a swing. It will vary for each child. We are always looking for the inputs that we can provide as a co-regulator to extend interactions, so similarly as a language user, we want to provide input that will extend the interaction as well, Sabrina explains.
If Sabrina is working with a child and they’re coming in with some ‘gestalts’, she wonders what will serve the client. She might take the girl who is scripting, “It’s raining!” to “I’m scared!” or “That’s loud!“. That’s language that the girl can then take to others to communicate, Sabrina explains. We’re looking for phrases that are fairly neutral and fairly flexible, she continues. Things that start with “We” or “Let’s” are great go-to words. “We did it!“, “Let’s go!” or “Let’s find it!” are great phrases as is language for transitions like, “How about…?“, “It’s time for…“
Sabrina says we can also talk as a child, using “I’m” in ways like, “I’m hungry” or “I’m tired“. Sabrina likes the word ‘another’ versus ‘more’ such as, “another one“, “another turn“, “another cupcake” which gives you a way to have more neutral, flexible language. “Another“, “it’s time to“, “it’s so fast“, or “it’s a car” are great types of contractions to use. You wouldn’t say “It is a car” because that’s worrying about grammar. That comes later. “It’s” and “That’s” is what we will model, Sabrina explains. “I’m gonna go!” and “Wanna play?” are other good phrases that GLPs can grab on to and use flexibly in their play and these phrases describe what the child’s longer ‘Gestalt‘ might be meaning.
Following the child’s interest
Sabrina says that it’s all about seeing what the child is interested in. Sabrina will wait, watch, and wonder, and use comments to see what the child is doing and support the interaction in this activity. It’s about attunement and providing good models in an activity or an interaction where the child’s engaged in reciprocal communication and in a position to be able to learn so you’re setting them up for success, and providing the right kind of language models that they can then mix and match later. The session looks like a big, fun play session, Sabrina says, but it’s very mindful. It has to match the child’s agenda so she can join and be welcome.
I shared that Sabrina’s sessions are indeed playful and enjoyable because she is my son’s SLP, and her and I presented at the ICDL NYC conference in 2021 showing a speech therapy session with my son from 2020, which was super playful. She makes it really fun for kids and my son always looks forward to his sessions with her!
Parent Questions
I couldn’t help but think of questions parents would ask Sabrina: How long am I going to be modelling phrases like, “Let’s do that!” before my child starts using them? I also wondered about parents who are worried about their child is using improper pronouns, since Sabrina said that grammar comes much later. Sabrina said that she is more worried when a child comes up to her and asks, “Do you want a snack?” when they really mean, “I’m hungry” because they’ve heard someone asking that question, and it’s followed by getting food. In this case, Sabrina will speak as the child, saying, “I’m so hungry!” which allows the child to navigate their way much better.
Two- and three-year-olds should not be asking questions in reverse order, Sabrina continues. They don’t speak like that. If children are mixing up their pronouns, don’t worry about that, she says. It’s a later stage. If kids are mixing up their “I“s and “You“s, it’s a sign that they’re not yet ready to figure that out yet. As for the question of how long a child will be at one stage, Sabrina says it takes as long as it takes. The goal is 50%. You can take language samples by taking down what the child says spontaneously, she explains. You then rate what stage each utterance is at. When you are spontaneously using 50% of a stage, that tells her that they’re ready to move on to the next stage, so she’ll change her language input. Sometimes a child is at a stage for a significant amount of time, and sometimes they’re through it in a few minutes. It really depends on the child.
More about GLP development
I asked Sabrina if neurotypical children are GLPs, too. She says that most autistics are GLPs, but GLPs don’t have to be autistic. There’s no harm in trying this type of approach if you’re working with an autistic child, she says. You can wonder if this is the way that they’re acquiring language. You might start using the mitigable phrases with the child, along with nursery rhymes, for instance. I also asked Sabrina what age categories she tends to see, or if there’s a developmental timeline for GLPs.
In Sabrina’s practice, what’s happening is that she’s getting a host of four- and five-year-olds who have been in ABA for a few years or other types of intervention until the parents get on Instagram and start to wonder if their child is learning and processing language in this way because when they were younger they were singing to themselves with sounds playfully. The longer you are using your current language system, Sabrina explains, it might take longer to change to something new, but it can also be very quick because finally someone is giving you something you can work with. It takes lots of observations.
Parents usually know how their child is attuned to music, language, and tone. As children age, even teens or adults who are more analytic still rely on those ‘gestalts’, and can be living in the Stage 1 or 2 ‘gestalts’ as their primary way of using language. Once we get to grammar in Natural Language Acquisition, they do look at developmental norms, she says, but it’s less about age and more about readiness within the stage and going on a developmentally appropriate path.
Developmental Differences
It’s an important point that development, in general, tends to follow a process. It may be atypical, but follows similar patterns and has similar building blocks, but might look different. Sabrina says we know how grammar develops, typically. We know the grammar forms that come in developmental order. Same thing for play. If you’re not at FEDC 4, 5, or 6, we’re not going to play symbolically with what makes sense for that child, thinking and wondering and wanting to stay in play with us. We support them in their own path, giving them that ‘just right’ challenge. Sabrina says we have to always walk along side who you’re supporting, going at their pace, and find that edge where you can bring them something new and interesting.
A GLP is not a delayed language user. They’re a different language user. It is not a ‘developmental disorder’ or ‘delay’. This is at the forefront of those teaching and using this model: They’re on a different path. They’re not delayed. They’re just doing things differently.
Sabrina O'Keefe, DIR Speech and Language PathologistGetting Parents on Board
There are still many parents who are stuck on their ideas of the way things ‘should’ be. I asked Sabrina if children of the parents who are ‘on board’ develop more quickly? Her simple answer was, “Yes“. One parent said to Sabrina, as their son was lying in her lap, “It’s all about the engagement and regulation, isn’t it?” Sabrina said yes. Unless we’re engaged and regulated, we don’t have the capacity to hear and listen to those language models, Sabrina says. Sabrina says it’s a real privilege to be a part of a family’s journey. After 22 years, she doesn’t take this for granted and feels very fortunate to be a part of this experience with families for years.
I asked Sabrina how she can get parents on board, and she said that she doesn’t pull out a norm chart! She talks about how excited she is to see them and how much she enjoys playing with their child. She will make a lot of comments about what the child is doing. You start to form relationships with humans, she says. It’s what’s shifted in her career. You need a balance because the Speech Therapist kind of has the upper hand in that relationship. Sabrina wants to even out that balance so you’re on the journey together and that the therapist is a safe person who loves that child so the parents feel more relaxed.
She lets parents know that it’s ok to feel what you feel and play with the same dinosaur for the whole time. Parents know when you meet another adult who gets your kid. It’s a weight off their shoulders, she shares. They don’t feel judged or like they’re being told what they should be doing. I shared that Mike Fields talked about that experience of being drawn to Floortime because they talked about his child’s strengths. When parents see how much fun their child is having and they’re excited to meet with Ms. Sabrina, it helps them relax.
DIR and NLA
Sabrina says that Marge Blanc speaks so much about how NLA and DIR are such good friends. As a speech therapist, Sabrina says that to have a social-emotional model match her language model, it’s so empowering. She encourages parents to get curious about their child’s language acquisition, and take good notes about what movies those scripts are coming from! Be great detectives. Sabrina loves DIR and she knew that it went together with GLP and NLA went together, but she wasn’t able to figure out how to conceptualize them together for a long time.
She was trying to fit the language models into FEDC 3 and just couldn’t figure out where to put it within the DIR model, but once the light bulb went off and she realized that this is an Individual difference, she was able to then support the child in front of her, knowing that this is an Individual difference being presented. It wasn’t about jamming a square peg into a round hole. She can now speak with confidence and passion about GLP.
Sabrina suggests the website Meaningful Speech as a resource on this topic.
This week’s PRACTICE TIP:This week let’s pay attention to our children’s communication!
For example: Does your child seem drawn to the rhythm of speech? Do they speak in scripts from emotional scenes in movies they’ve watched? Let’s figure out what they are trying to communicate with us and provide the new Gestalt’s that Sabrina suggested to let them see that we hear them and get what they are communicating with us.
Thank you to Speech Therapist, Sabrina O’Keefe, for bringing us how DIR, Gestalt Language Processing (GLP), and Natural Language Acquisition (NLA) fit together and complement each other! We hope you found it very enlightening and will consider sharing this post on social media!
Until next time, here’s to choosing play and experiencing joy everyday!
The post Gestalt Language Processing and DIR appeared first on Affect Autism: We chose play, joy every day.
Photo credit: James Gana
What is DIR?What is Floortime?DIR GlossaryParent Perspectives: Navigating Our Different Support Rolesby Affect Autism
https://affectautism.com/wp-content/uploads/2024/02/2024-02-02.mp3Parent Perspectives
On this edition of Parent Perspectives from Affect Autism, we have a discussion with a mother and grandmother of an autistic son and grandson about navigating her support roles. Parent Perspectives is an addition to the usual podcasts.
This Week’s Guest
This edition of Parent Perspectives features returning guest, Michele Abraham-Montgomery, who specializes in Family Services, Autism Resources & Advocacy, Peer Family Coaching, Peer Best Practices, Modeling Play Therapy Techniques and IEP Reviews and Preparations. Her and her autistic son, Khylil, whom we podcasted with last year, and with whom she will be presenting at ICDL’s upcoming DIR Conference, created Spectrum Success 911, a nonprofit organization, connecting families with community resources and organizations of support. Chele also provides programming and resources including Autistic Ambassadors, a virtual support group called The Ausome Movement and more! She is also now the supportive ‘glam’ mom of an autistic grandson as well and today we will be discussing navigating advocacy from the backseat and all the different support roles we play.
ResourcesChele is fun! ‘Glam’ mom refers to a short form for ‘glamorous’ (like in the song The Glamorous Life by Sheila E, written by Prince–see a podcast about this song here). Chele likes to refer to herself as a ‘glam’ mom instead of a ‘grand’ mom (grandmother). She talks about maintaining her ‘glam’, which is about maintaining her state regulation.
Autism the Second Time Around
The beauty of everything the second time around, as a ‘glam’ mom, Chele begins, is identifying the behaviours that she didn’t recognize the first time around with her son, Khylil, such as when he wants those deep hugs. She never knew what Khylil was doing, but now she understands what her grandson is doing. She is recognizing her grandson’s non verbal cues. The phase of acceptance begins with rejection. In the beginning, the parents have a hard time accepting that their child has a diagnosis. They get to acceptance and eventually get to embracement. With her grandson, she is now really embracing.
The phase of acceptance begins with rejection.
Michele Abraham-Montgomery, autistic parent and grandparentNavigating from the Back Seat
Chele says that her daughter has come in and gained her crown as an Ausome mom from the very start of Chele’s autistic grandson. Chele’s daughter remembers the services she’s getting for her son from when she was younger and her brother was receiving services. Chele says that she has to navigate from the back seat as a grandmother, allowing her daughter to have that space to come and ask her questions, as opposed to pushing information on her daughter.
Listening to her daughter engage with the services for her grandson really makes Chele see how much her daughter was paying attention, and her daughter was the baby of the family. Chele says that she unintentionally made her daughter a co-taker of her brother by saying things like, “Make sure you take care of your brother“. In doing so, her daughter became the ‘big’ sibling, in a sense. Chele sees that her daughter really was paying attention and absorbed everything with her brother. I pointed out that she had a good role model in Chele.
What about when she’s not catching things that Chele notices? Chele says that social media is prevalent now, which wasn’t around when Khylil was young. Her daughter will go to TikTok and Chele will wonder why she’s not asked, but she has to bite her tongue and be there with the safety net if her daughter comes to her with her struggles. Chele allows her daughter to have that space to make her own errors. She says you have to stay in your supporting lane and wait until they come to you, then be ready to ‘brush them up’ with love, which, of course, is easier said than done.
Acknowledgement of the Parent, First
Chele had to learn from the start to acknowledge her daughter–her ‘baby’–first, even if the grandchildren are running to her. She’ll love her daughter first, and then love the grandkids. She is seeing on TikTok now that adult children are complaining that their parents let the grandchildren ‘get away’ with things that they, themselves, never got away with growing up. Chele says we have to make sure we don’t make our children feel invisible once the grandchildren come. She keeps her daughter as ‘her baby’ first and foremost.
I commented that it must need to be something very intentional because it might not come naturally. Chele said that if the grandchildren run to her first, she’ll pick them up and run to her daughter and have a group hug. I love how Chele has the insight of how she’s being received. Chele says that she has learned to accept that her own parents did the best they could with what they had. Being aware of her mother’s undiagnosed bipolar disorder has helped her understand why her mother did what she did, and helps her to recognize behaviours in her daughter due to her daughter’s diagnosis. It allows Chele to help her daughter to cope.
Breaking the Generational Cycle of Behaviours
Chele also added that she remembers feeling invisible and unloved as a child. As she got older and more educated, she realized that her parents did the best they could with what they had at the time. Her mother had her own background with her own parents. Chele talks about breaking the cycles of generational behaviours and starting new ones with her own daughter, which has been hard, but is necessary. The end of her mother’s life was the best six months of Chele’s life because she finally felt seen by her mother, who was wanting to draw close to Chele and her siblings.
Chele’s mother gave her so many ‘gems’. Chele said it’s important to collect these gems and pass them on to her children and grandchildren. Her mother would tell Chele’s children how much she loved them all the time, even though she never told Chele much that she loved her. Chele decided to make sure she told her children how much she loves them so they know. I referenced Dr. Ira Glovinsky’s discussion about Selma Fraiberg’s term ‘ghosts in the nursery‘. I also love how Chele ‘presumed competence’ in her self-reflection (FEDC 9) in her parent’s ability to do the best they could.
Hearing the Voices from her Different Support Roles
As a peer professional and now supervisor, Chele wears a lot of hats, so as she works with peers, they share stories. As they are venting, she’s taking on their emotions and it’s important for Chele to be able to expel that with another support person for herself. Chele was talking to her therapist talking about how she felt like she was losing her mind because she was hearing voices and she was trying to block them out. Her therapist told her to record what she’s hearing or write to it down. As she’s working as a system partner, a Mom, or a resource person, Chele said that as she’s talking, another ‘hat’ will step in and give her the answer.
Her inner voice was giving her the resources that the other hat she was wearing required in that role. Chele was trying to suppress it, but her therapist encouraged her to realize that her brain is constantly working, and information is coming to her from all of her different support roles. She will now jot down notes as these ideas come to her when she’s in her different roles.
Setting Boundaries
Chele talked about the boundaries she has to navigate. It’s about learning how to respect space–especially during conversations–which she does in mock sessions with her children that included writing down your thoughts so that you can wait until it’s your turn to talk and then say what you wanted to say. Many people say that autistics talk and talk and don’t let you get a word in. Doing a back-and-forth is a skill, she emphasizes. She uses the ping pong example and how she’s waiting for the ball to come, figuring out how to position herself to hit the ball back, similar to a conversation. Dr. Ira Glovinsky also used the ping pong analogy, in the context of back-and-forth interaction with children.
Even now with peer coaching, Chele teaches people how to set boundaries. People treat you the way you teach them to, she says. If someone pushes, you can push back, otherwise they will push further and set the boundary for you. She also teaches this to the young adults she works with as part of Navigating Safe and Healthy Relationships. When our children are younger, we want them to be communicative and social with others, but we also need to realize that they will become young adults who will need to self-advocate and set boundaries.
Chele teaches her son and others how to date intentionally, especially with diagnoses. If you trigger each other in a dating relationship, you have to know how to de-escalate yourself and then de-escalate with your partner, including taking preventative measures. You can also identify social cues and be able to say when you’re not comfortable. Chele wants them to know that is ok and they can still have integrity and dignity.
We want to be intentional and cognizant of not shaming, blaming, or judging others.
Michele Abraham-Montgomery, autistic parent and grandparentValidate Another’s Perspective
Chele also had an example of when an autistic young adult had the opposite thing happen where the he was not communicating what was happening. His caretaker was making assumptions about it, and not presuming competence. Chele was able to meet the young adult where he was at and was able to find out that the individual wasn’t drinking water because he feared that the water filter wasn’t changed, and that he wasn’t eating because he didn’t know if the caretaker had washed their hands. Chele said this individual had very logical reasons for his behaviour, even if a bit obsessive with regard to cleanliness.
Chele says that you always have to validate what individuals say, even if we don’t see or understand what they’re saying–even if it’s not real, because it’s real to them. We don’t want to downplay what’s going on with them. Chele pointed out that when we order a burger at a restaurant, we don’t know if a fly landed on it. Even if someone saw a fly land on their burger and chooses to eat it anyway, it’s not right or wrong, necessarily. Some people are more cognizant of details than others. It’s an individual preference. Chele said that we can’t make people feel that their perspective is wrong.
Staying in Your Lane
Staying in the back seat and maintaining our ‘glam’, Chele continues, we have to make sure that we don’t co-parent with our children. Chele’s responsibility as the ‘glam’ mother is to love the grandchildren and support her children and their families. It’s her children’s responsibility to discipline and care for her grandchildren. She thinks of the traffic light. As long as we stay in our lane, we stay green, but when we start going into territory that’s ‘iffy’, now we’re yellow: proceed with caution. If you’re still going forward with yellow, you will hit the red, and maybe you’re in a space you’re not supposed to be in.
That yellow light is your warning to ask yourself if you’re staying in your lane and if you’re maintaining your ‘glam’, Chele explains. You have to ask yourself that question and pay attention to your child’s cues. If her daughter invites her to attend an appointment with her grandchild and their supports, Chele has to follow her daughter’s cues to support her, and to ask permission versus just speaking her mind. We’re so used to telling our children what to do, Chele continues, but she has to respect her daughter’s position as an adult now and ask permission to share her opinion with her.
A New Take on Fight, Flight, or Freeze
Chele points out that she also has to set an example for her children. If they’re out and someone makes a comment, Chele wants to set that example to show that you can keep your ‘glam’ because our children might be quick to defend. She will smile and thank someone who makes a comment for their interest, but reassure them they’re ok. Chele changed the narrative of fight, flight, and freeze for herself. She will use her words wisely to fight, versus using her hands. In some situations, she doesn’t need to run to put out every fire. She’ll let the younger ones take care of it. She will navigate when to move in. She’ll freeze a lot more now, too, rather than run to fix things, high on adrenaline. Now she’ll freeze and wait for the opportune time to step in.
Maintaining your ‘Glam’
To our ‘glam’ parents, Chele announces, first and foremost, maintain that ‘glam’. Don’t let your children or grandchildren push you to a space where you can’t be glamorous. It’s ok to step back from a situation and collect yourself. We learn how to empower others with what we say, and we want to drop ‘gems’ now when we speak. We want our ‘blows’ to land by being cognizant of what we’re saying and how we’re presenting ourselves, Chele continues. Sometimes it’s ok to freeze and wait for the opportune time to jump in. You don’t have to move when everyone else is moving. Maintain your glam, she insists. To me, ‘maintaining our glam’ is about maintaining our state regulation. We talk about balancing our Functional Emotional Developmental Capacities (FEDCs) with the person we’re interacting with, and we can do this with our children, too.
You don’t have to be a therapist to do something therapeutically.
Michele Abraham-Montgomery, autistic parent and grandparentThank you to Chele for sharing her insight and wisdom–all of her ‘gems’–in this new phase of her life as a ‘glam’ mom! I hope that you learned something valuable and will share it on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
Thank you to recording artist Ayria for the intro/outro song permission.
The post Parent Perspectives: Navigating Our Different Support Roles appeared first on Affect Autism: We chose play, joy every day.
Photo credit: Ketut Subiyanto
What is DIR?What is Floortime?DIR GlossaryParent Perspectives: Parent Self-Regulationby Affect Autism
https://affectautism.com/wp-content/uploads/2026/01/2024-01-19-PP.mp3Parent Perspectives
On this edition of Parent Perspectives from Affect Autism, we have a parent discussion with an autistic parent of two autistic daughters about parent self-regulation with some great examples. Parent Perspectives is an addition to the usual podcasts.
This Week’s Guest
This edition of Parent Perspectives features Cass Griffin Bennett in Washington State, who is the mother of two girls, aged 6 and 4, both autistic. Cass was diagnosed with ADHD as a young adult and since her girls were diagnosed, found out that she is also autistic, which has helped with her insight into her daughters as she realized that the things that helped them, helped her as well, and vice versa. Her youngest is non-speaking and began robust high-tech AAC at age 2.
Highlights
- Modelling the use of low tech alternative communication with no expectations sparks curiosity in our children
- DIR is really about the parents changing to support your child
- Parents have different levels of support needs themselves
- You can’t dwell on what you didn’t do in the past and you can’t blame yourself for what you cannot do in the present
- There can be competing sensory needs in families
- Supporting your own regulation is a constantly evolving process that helps us find that calm center and de-escalate as we learn to support our own nervous system
- Children seeing how we support our own regulation helps them
- It’s not realistic for our children to think that we are always regulated
- Accommodations are helpful for everybody
- Different bodies need different things
- Learning how to support your own needs while being in community is a real social skill that takes the self-awareness of what you need, being intrinsically motivated to be in community, and realizing that everybody has different needs
- Letting our kids know and realize that other people experience the world in different ways is a real way of developing theory of mind as well and promotes the learning of the need to self-advocate
- Cass knew how important co-regulation was, but hearing how important it was over and over made her feel like a failure because she was told to do self-care which was either was not realistic, or didn’t help her in the moment
- Inserting the pause, as Dr. Stuart Shanker says, might just be enough to help you regroup and self-regulate when with your child such as pausing to say, “Whew, you’re asking a lot of questions right now.“
- Cass has a few velcro picture cards that say, “I need to press PAUSE” up around the house that she can see to reminder her to pause–not to be used as a threat, but to be a self-regulation tool for herself, that she is also modelling to her children
- Modelling using the communication pictures helps her children to see that they, too, can figure out their own self-regulation tools; they have their own backgrounds on their strips that they chose to personalize, where they stick their own picture cards
- If you are struggling with self-regulation in one situation, always remember that you can do it differently next time (i.e., we can’t get caught up in the ‘shame spiral’) A lot of times, we don’t give our kids that direct chain of what we’re doing when we’re self-regulating. And for autistic kids, in particular, the more of those little insights into how we’re keeping our cool when we’re keeping our cool, so to speak, the better off they’ll be with experimenting with strategies themselves to see what works for them.
Cass Griffin Bennett, autistic parentBy modelling what works for you, and that you’re a person who’s always trying to figure out better ways of meeting your own needs, you’re also showing them that being in community requires understanding that everybody has different needs, which is a building step towards being in community.
Cass Griffin Bennett, autistic parentThinking more about experimenting and being curious about regulation tools for ourselves is one of the most meaningful things we can do as parents to support our own health and then to support our children learning those skills themselves.
Cass Griffin Bennett, autistic parentIf there’s something you need to hear daily on your parenting journey, put it somewhere where you can see it.
Cass Griffin Bennett, autistic parentResources Alternative and Augmentative Communication (AAC) * We chose play Floortime documentary series * The Autistic Self-Advocate Kieran Rose* Thank you to Cass Griffin Bennett for sharing her wonderful self-regulation tools that help her and her family! Please feel free to share this podcast and blog, and your own techniques you and your family find helpful, on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
Thank you to recording artist Ayria for the intro/outro song permission.
The post Parent Perspectives: Parent Self-Regulation appeared first on Affect Autism: We chose play, joy every day.
Photo credit: Royal Opera House**
What is DIR?What is Floortime?DIR GlossaryThis Week’s Podcast
This episode, I bring you the live recording we did at the International Council on Development and Learning (ICDL) 2023 International DIRFloortime Conference where I interviewed Dr. Ira Glovinsky who is a Clinical Psychologist in Michigan at The Glovinsky Center for the Child and Family, using a Developmental, Individual differences, Relationship-based (DIR) framework. We discussed the component parts of a Relationship, including the interoception that accompanies the development of a Relationship, and how disruption or discord in any component aspect of the Relationship influences its development, and how to tune into these inner signals, including the role of sensory experiences in this process.
Revisiting the ‘R’: Hidden regulators in the development of relationshipsby Affect Autism
https://affectautism.com/wp-content/uploads/2024/12/2024-01-05.mp3Bonus podcast:
Post-Presentation Q+A
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!How does a Relationship develop?
The ‘R’ in the DIR Model stands for Relationship. Ira began by describing that the Diagnostic and Statistical Manual (DSM V) will describe behaviours or characteristics that categorize people into diagnoses, but that each person may only have a subset of these characteristics. Yet, all people in a particular category are ‘treated’ in a similar manner.
If you look up the word ‘Relationships‘ in the Research Domain Criteria (RDoC), you will find a matrix that starts with genes and goes to molecules to cells to circuits to physiology to cognition to emotions to social to developmental and to environmental, Ira shares. This is how a Relationship needs to be looked at, Ira posits, but we’re not there yet, he says. He would love to get this into training programs because we need to understand a lot more to understand the people we work with, he states.
Ira also talked about a Relationship starting with an instantaneous feeling that you have in the presence of another person. Your body is giving you signals, he says. It is a visceral feeling.
In the absence of Relationship
Next, we viewed this video of ‘Genie’. She was a girl who was raised without human contact, and you can see the odd characteristics she developed. We also referred people to google René Spitz videos on hospitalization and Romanian
orphanage videos for more examples of what happens in the absence of Relationship. Ira stated that these are extreme examples and that, of course, in most of the cases we witness, you do not see someone this extreme.
Components of Hidden Regulators
Ira shared that he thinks about Relationship in the same way that he thinks about attachment. In referencing the work of Myron Hofer, M.D. at Columbia University, he described the umbrella of attachment that has the following spokes: body temperature, mother giving milk, activity level, etc. that regulate the baby. Similarly, he thinks of the hidden regulators as the spokes of the Relationship umbrella that include Attunement, Synchrony, Contingency, Co-regulation, and Marking.
Ira thinks about how these components affect our sensory experience including our Interoception. You can be on or off in any of these components and it affects the development of the Relationship, he explains. We tend to use language and focus on the cognitive concepts explicitly with words, rather than getting concepts from our inner experiences in a Relationship. We miss the ‘body’ piece, Ira says. We miss the part about the visceral experience.
Examining the Relationship
Dr. Glovinsky illustrates his point by sharing part of a video of Swan Lake where two dancers demonstrate all five components of the Relationship that he described earlier. Ira talked us through the entire video and said that he shares this with parents in his practice. At first, parents often wonder what this has to do with their child. Once Ira talks them through it, as in our podcast recording, they understand his point.
Ira shares that people tend not to look at all of the components of a Relationship at the same time. They might read a chapter on just Attunement, or one on Synchrony, for example. We want to look at all of the components when examining a Relationship, he says.
Accessing the ‘R’
Developmentally, when in utero, the fetus senses the mother’s diet, movement, noises, and voice, etc. It’s in infancy where the spokes of the Relationship come up. In childhood, the child is adapting the environment to their Individual differences (‘I’ in DIR) when it is not meeting their needs. Our Individual differences help us find a sense of safety, Ira says, and is relative to each person and each body.
Ira also discussed the importance of touch and the early body relationship between the mother and baby, which is like the ground floor for what a Relationship will be like for that baby. That initial touch experience gives both partners signals of tension, stress, calm, and comfort to start the Relationship, Ira explains.
A Sense of Safety and ‘Signals’
Dr. Glovinsky also talked about how considering the spokes of ‘safe’, there’s nobody on this planet who can tell someone when they are safe. You feel safe when you feel safe. Our autonomic nervous systems register if we feel good around someone else. Ira had read a book, years ago, edited by Dr. Joan Borysenko that spoke about Relationships and the effect of stress, and ‘auras’ that are around us. It talked about how we pick up chemical/electrical signals from people who we are with.
Ira’s first response was that he should put this book down because it was way out there, but then he read the book The Chemistry Between Us that talked about how there is a chemistry between two people that is felt. You can feel very authentic around one person, where with another, you just don’t ‘click’. We have to pay attention to this in our Relationships, Ira says.
This gets into Selma Fraiberg’s work of Ghosts in the Nursery. Each of us carries our history with us 24 hours per day, Ira explains. When we interact with another person, our histories are interacting with their histories, and that’s translated into body signals that we may not have paid attention to that will affect how we relate to this other person, and to how we parent our children. Our histories affect the Relationships we are in, Ira restates.
Bodies and cells talk to each other, and we feel things viscerally that get translated into thoughts, Ira explains. I added that Autistic Self-Advocates often say they are only disabled by their environment, and ‘environment’ can be the chemistry they feel with another person they’re interacting with.
How do you foster a better relationship?
Ira says that when you look at a Relationship, you want to identify at which of the component parts the problem is at. Each of the component parts of Attunement, Synchrony, Contingency, Co-regulation, and Marking each have spokes themselves: rhythm, tempo, pacing, intensity, etc., and he referred to the Pas de Deux example.
Ira continued that we run into the same problem with ‘Relationship’ as we do with ‘Attachment’. He talked about holding Co-regulation in mind rather than flooding a child with input or not giving enough input. We remember experiences by highlighting them (i.e., Marking).
Relationships are Complex!
In summary, Ira states that we can’t put people into boxes. Talking about ‘Relationships’ or ‘Diagnoses’ in isolation is limited in helping us understand complex human behaviour, so let’s instead use the term ‘Complexity’, he says.
This week’s PRACTICE TIP:This week let’s pay attention to the components in our Relationships with our children!
For example: Do you notice if something feels a bit off? Go through the components of attunement, synchrony, contingency, marking, and co-regulation to see if you can tweak and of them.
Thank you to the International Council on Development and Learning (ICDL) for allowing me to publish our presentation from the 2023 International DIRFloortime Conference and to Dr. Ira Glovinsky for being my guest for this live recording of the Affect Autism podcast! We hope you found it very enlightening and helpful in your relationships with your children and/or clients. Please consider sharing this post on social media.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Revisiting the ‘R’: Hidden Regulators in the Development of Relationships appeared first on Affect Autism: We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryParent Perspectives: Parents Listening to Autistic Self-Advocatesby Affect Autism
https://affectautism.com/wp-content/uploads/2023/12/2023-12-22-PP.mp3A New Podcast!
This week is another edition of Parent Perspectives from Affect Autism! I thought it would be helpful for parents and practitioners to hear some of the things we discuss at ICDL’s parent support meeting, which happens Mondays at 1pm Eastern time, and in the evenings as well at 9pm once each month. Parent Perspectives is an addition to the usual DIR-related podcasts. I hope you will enjoy them!
Today’s Content
Today’s edition of Parent Perspectives covers content discussed in ICDL’s parent support meeting from Monday, October 2nd, 2023 with guest Autistic Self-Advocate, Kieran Rose. Kieran fielded questions from parents, providing a self-advocate’s perspective, which the group found very helpful and empowering. I invited autistic parent, Cass Griffin Bennett, who attends the parent support meetings regularly to join me in relaying what was discussed at the meeting. I hope you enjoy it!
ResourcesIn this week’s edition of Parent Perspectives, I referred to the following resources:
- Kieran Rose podcasts:
- Redefining the Autism Narrative: Part 1
- Redefining the Autism Narrative: Part 2
- Good Intentions Creating Unseen Stigma
- Part 1: To Whom Should Parents Listen?
- Part 2: Adult Diagnosis and What it Means
- Kieran Rose’s The Inside of Autism course
- Theory of Mind is Developmental podcast
- IEP podcast
- Neurobears
- The Autistic Self Advocacy Network (ASAN)
- Parent Perspectives: Retrospective Perspective
- The Little Scientist podcast
- Ambiguous Loss podcast
- Kristen Neff’s Self-compassion
- Casey Elhrich
- At Peace Parents
- Uniquely Human book
- AAC podcast Thank you to Cass Griffin Bennett for joining me for this podcast! A huge thank you to Kieran Rose for his guest appearance in ICDL’s parent support meeting and for giving me permission to publish this blog post about it. Please consider sharing it on social media and let us know if you found it insightful, helpful, or informative. Stay tuned for the next podcast in two weeks!
Until next time, here’s to choosing play and experiencing joy everyday!
Thank you to recording artist Ayria for the intro/outro song permission!
The post Parent Perspectives: Parents Listening to Autistic Self-Advocates appeared first on Affect Autism: We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryThis Week’s Guest
Developmental, Individual differences, Relationship-based (DIR) Expert Training Leader and Clinical Social Worker in Psychotherapy Private Practice, Galina Itskovich, is the Director at the Psychoanalytic Psychotherapy Study Center (PPSC) Refugee Support Project “On The Move“ and recently presented “AFTER TRAUMA: Promoting co-regulation through parent-child play” (which can be viewed until December 10th, 2023) at the International Council on Development and Learning (ICDL) DIR/Floortime conference in October.
This Week’s Topic
Today we are discussing grounding techniques, using emotionally meaningful objects, affect cueing when we’re grounding and being aware of ourselves so we can co-regulate to down-regulate our partner, and setting our expectations, all in the context of trauma. Galina Itskovich shares her experiences working online with refugees of war and parents in Ukraine, giving us tips and techniques when dealing with trauma with our own children–whether it be a life-or-death scenario, watching news stories about war that produce anxiety in our children, or other forms of fear-provoking situations.
Regulating through Traumaby Affect Autism
https://affectautism.com/wp-content/uploads/2024/12/2023-12-08-Trauma-Regulation.mp3Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Where and How to Begin?
Terrible events happen to everyone. It’s what we do with that that’s important. It’s good when we have somebody by our side to help us go through it in one piece, physically and emotionally. Thankfully, the physical part of the war will come to an end one day, but the emotional part will stay with us for years. We need to figure out how to go through it in the moment, how to live through it, how to deal with the chronic stress and constant anxiety, and how to make sense of it after it’s over. It’s really a lot.
I asked Galina how she begins a conversation with a family going through war. She said that she starts with herself. She needs to calm down. She cannot work with them if she is stressed. She can’t breathe nor attune to their stress if she is deafened with her own stress, she explains. Stress is something that’s in our bodies a lot and we feel it right away.
Just weeks before the Ukrainian war, Galina was in vacation in Quito, Ecuador. She was standing on the balcony appreciating the view when an earthquake started. She experienced what her clients experience in that moment. Time started moving very slowly, she said. She felt like she was in slow motion. The stones of the building started falling and the bell tower started chiming. She was in her own movie realizing it was an earthquake when someone came for her and she moved just in time. Time is very slow during trauma, she shares. Our decisions are ‘off’.
Regulation Techniques
So, the first thing you do is to un-traumatize yourself. You use whatever tools you have, Galina says. We don’t apply any technique in isolation. It needs to make sense.
Crossing the Midline You can hug yourself which is your arms crossing the midline of your body. Brain hemispheres communicate with each other. When you have a child next to you, you can hug the child as well and the child can hug you, if you get the child’s permission.
Breathing Next, you can breathe a full, deep breath. You put the air into your stomach and feel your rib cage expand. If you have time you can do a visualization, following the air flow into your rib cage by putting your hands on your stomach to watch your hands rise as the breathe comes in.
In Dr. Stephen Porges’ Polyvagal Theory, Galina shares that your response depends if you learn about something on the news or if you are in danger and need to run. If you learn about something traumatic on the news, you need to calm down first. But if you are in imminent danger and need to run, you need to get into a ventral vagal state where you are ready for action. You need to be ready to run, but not be anxious, which causes mobilization.
Anxiety is good, Galina shares. It prevented us from getting eaten by wild animals by noticing danger. We survived because of that. We need to be present and help each other to survive, so we need to co-regulate with a scared child.
Grounding If you want to do a little grounding, you need to use your environment. See where you are, how safe is it and what you can do. In cases where refugees are in very crowded spaces, all you might have is the ground and the floor. You can shift your weight and pay attention. Shift your weight from left to right. You need to move, but you can’t take a walk if it’s not safe, but you can shift your weight.
Muscle Release You can release your neck and jaw muscles. You can release your neck muscles as you shift your weight from left to right. As you pay attention to parts of your body, you will see if you need to tense up or release. You feel it tense up and then release it. If you try to tense up but have nowhere to go, you will realize that you have been too tense all along.
Emotionally Meaningful Objects You can use emotionally meaningful objects or transitional objects–things that remind you of your home. It can be your favourite pen or the key to your house. One of the refugees had this idea to hold onto their house key while doing the grounding exercises because it felt good. I wondered if it could be more anxiety provoking if you’re thinking about going home, but your home was destroyed. Galina says that maybe it wasn’t destroyed and you have hope. Or you could imagine a door that the key will open one day.
I asked about soothing stones, which you can hold in your hand and feel the smooth surface of the stone to calm yourself. By focusing your attention on the object, you can help calm anxiety. Galina painted a fish on a stone that she found and now it’s meaningful to her (meaning making) and she can hold on to it.
As a parent, you can encourage your child to use a favourite object, Galina offers. This is good for early separation from the primary attachment figure, the parent, for instance. For a child separating from the parent for the first time, it’s very scary and difficult, especially if you don’t have object constancy yet. The child doesn’t know if they will ever see the parent again. I shared how Dr. Gordon Neufeld talks about objects to preserve attachment such as putting stickers in the child’s lunch bag so your children hold on to you while at school (as one example).
This is even more meaningful, Galina responds, because now it’s your safety object. If you’re worried too much about what’s happening, hold on to the rock, or the key, or the pendant we made together. Hold on to that. Can you feel it? Is it smooth? Is it cold? Is it soft? Is it hard? Is it warm? While you’re thinking about the object, you are no longer thinking about when your parent will return.
Mind-Body Connection
If you shift your cognition, Galina explains, you can shift your emotional attention. You cannot be tense and relaxed at the same time, she adds. If your mind relaxes, your body will follow and if you relax your body, your mind will have to follow as well. It’s really important to understand this connection and see how it works.
Our Emotional Immune System
Don’t work against common sense, Galina adds. She has seen this with some refugees who say that their child didn’t experience any problems because they shielded the child from the horrors going on, then they don’t understand why the child is showing so many symptoms afterwards. As she then works with the child with different media such as kinetic sand or drawings, horrible content starts coming out. This was a child dealing with multiple fears and the child’s imagination drew things even worse than what was going on in real life.
During Covid you had people in full isolation for over a year or longer, Galina says, and when they come out, they caught every virus that came along. We have to take care of our emotional immune system, and when you lie too much, it really affects the Relationship, she adds. It’s not a good idea to lie to kids. It’s important to find meaningful, appropriate language, she asserts, and it’s important to figure out how to emotionally express how you actually feel.
I brought up the movie Life is Beautiful and Galina shook her head. Forget this movie, she said. Whatever experience you go through, it needs to be real. We don’t want to present this additional challenge on our children in real life, Galina says. It’s important to be together, to be co-regulated, and to share. If your child caught a glimpse of what was happening, it’s ok to say, “I’m scared, too” rather than deny the feeling. We have been teaching them to name feelings. If they observe us being upset and we say we are happy, it adds confusion.
Ukrainian Story Book with Children’s Drawings
An art therapist in New Jersey was working with some of the children who were producing drawings that are shared in a book, which is in Ukrainian, and available for purchase via PayPal to Galina’s email address. The book displays drawings of the enemy, a big spider who has captured a fly. The spider is the symbolic representation of what was happening to them because they are no longer in their country. The spider is there.
Setting Expectations
As adults in our higher Functional Emotional Developmental Capacities (FEDCs), we are dealing with multiple realities, Galina begins, and multiple timelines, whereas kids are dealing with the immediate timeline, depending on where they are at developmentally. We need to have the perspective of what’s going to happen next and we have to have a plan. When we lose control it’s a very painful, mindboggling situation for us, as capable adults. It’s a huge blow, so going back to the hugging exercise is the space that you can control. As a therapist, Galina can’t control that step for anyone, but she can stand right in front of them.
She had very moving feedback from someone in the war zone. A parent and child heard blasts and ran to each other and held each other. Galina said that this was a misunderstanding because in that situation, they needed to run. These are multiple perspectives and multiple expectations, Galina says. You do need to comfort the child as a parent, but as the adult you also need to know that you need to run and take action.
Galina can set expectations with the adults, which would be different from the expectation she would have with a child, and with the expectation they have from her. The mental health professional cannot perform magic and shield anyone from their experiences. But, she can give them tools that have the potential to work and work for other people. That’s all she had, so setting expectations correctly can help diminish disappointment.
Affect Cueing and Co-Regulation
We usually say that self-regulation stems from co-regulation as you first co-regulate with parents and eventually learn how to self-regulate. At the ICDL DIR/Floortime conference, Galina gave a different spin on this when she said that the parent needs to focus on self-regulation first before co-regulation–but she meant with themself. That is, an adult must be self-regulated before they have the capacity to co-regulate with a child. In this case, we’re not talking about development, but how an adult can have the capacity to co-regulate.
Humming Galina says that you have to focus on your breathing and your own body in space, your ability to relax, and use your vocal cords to relax your vagus nerve, such as by humming.
Cold water You can put your face in a bowl of cold water, or hold onto an ice cube and rub it in your hand or in your face. You can use the ice cube as a visualization object by imagining that as the ice cube melts, so does your anxiety.
Square breathing Breathe in on 4. Hold for 4. Breathe out for 4. Hold for 4. Repeat it many times.
Squeeze and release You can do this for up to 300 times per day, Dr. Porges says, as you breathe, Galina reports. Galina was demonstrating this by squeezing her fingers and saying to be aware of your surroundings. If you are anxious, you move into the headspace, she alerts us, so you see, but you do not see. You focus on what you see, which allows you to forget about the present moment for a second, but you can still see where you are going. This can help you stay active, but calm.
Locating your Stress in your Body Try to figure out your feeling, name it, and locate your feeling or stress in your body. Some people feel a knot in their stomach, some people feel constricted breathing, some feel a burst of blood in their head, and some feel weak arms and legs. It’s important to know where you feel your stress, and you can then ask your child where their stress is. What does it feel like? Where is it?
Repetition as the Learning Medium I asked Galina what to do if the child can’t answer or doesn’t know how to answer. She said that you keep asking and repetition becomes the learning medium. I proposed that the child might just repeat what you say as a script, without actually having that interoception yet. Galina said that you can rub your stomach and say, “Ahhh, that feels better. What about your tummy?” If the child is in the sympathetic state of stress, you can ask if it’s ok if you touch their tummy. And you can breathe together.
It’s all Play
Play is not an isolated event we do when we feel good. We play when we’re sad and anxious, too. We may play differently in those cases, but we will be playing together, nonetheless. Whether it’s playing with our breath, or with our transition objects, with each other, or with our ideas, see where the child takes it, meeting them where they are at. Galina says you can have a simple dialogue about why we are here and wonder what is happening, asking the child, “What do you think is happening out there?” Kids sometimes ascribe meaning from video games or other experiences. We can follow it, or we can distinguish between the video game and real life.
Many parents relay to Galina that in stressful circumstances that their kids on the spectrum became little adults with no more tantrums, disagreements, or insistence on the routine. Our job is to make it easier on them and to not let them go through it alone. Be with them, whatever their experiences are. Galina says it’s important to be real. It’s important to be available to our children, and it’s important to play through whatever happens to us–and that play is a very broad definition.
This week’s PRACTICE TIP:This week let’s practice self-regulating with the calming techniques that Galina suggested when we find ourselves overwhelmed when with our children.
For example: Do you have a soothing object that you can keep in your pocket to provide grounding when you feel overwhelmed? Can you focus on your breathing? You can model these techniques for your child, as well.
Thank you to Galina Itskovich for her gracious and heartfelt volunteer work with parents and children affected by war, and for sharing her experiences with us. Please consider sharing this post on social media, and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Regulating through Trauma appeared first on Affect Autism: We chose play, joy every day.
The post Autistic Masking or Impression Management? appeared first on Affect Autism: We chose play, joy every day.
The post Parent Perspectives: Retrospective Perspective appeared first on Affect Autism: We chose play, joy every day.
The post Visual Spatial Planning and Assessment (ViSPA) appeared first on Affect Autism: We chose play, joy every day.
The post Visualization leads to Imagination appeared first on Affect Autism: We chose play, joy every day.
The post Parent Perspectives: Relationships, Play, and Growth appeared first on Affect Autism: We chose play, joy every day.
The post Parent Perspectives: Navigating our Health and Education Systems appeared first on Affect Autism: We chose play, joy every day.
The post Harnessing the Power of Narratives to Impact Development appeared first on Affect Autism: We chose play, joy every day.
The post (Non)Compliance does not equal (Dys)Regulation appeared first on Affect Autism: We chose play, joy every day.
The post A New Community-Created Resource: SLP MAPs appeared first on Affect Autism: We chose play, joy every day.
The post Parent Support: How Do We Handle Fears and Anxiety? appeared first on Affect Autism: We chose play, joy every day.
The post Spiral Praxis and Movement for the Bodymind Process appeared first on Affect Autism: We chose play, joy every day.
The post All About Praxis: Part 2 of 2 appeared first on Affect Autism: We chose play, joy every day.
The post All About Praxis: Part 1 of 2 appeared first on Affect Autism: We chose play, joy every day.
The post A Floortime Approach to Fears and Phobias appeared first on Affect Autism: We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryPhoto: Annie Spratt
Floortime Coaching for Different Parenting Stylesby Affect Autism
https://affectautism.com/wp-content/uploads/2024/05/2023-05-12.mp3This Week’s Guest
This week I welcome Gabriela Michaca who is a licensed school neuropsychologist and also just received her Masters in Occupational Therapy. Developmental, Individual differences, Relationship-based (DIR) Model Expert and Training Leader in Los Cabos, Mexico. She recently presented at the International DIR/Floortime Conference in New York City about parenting styles and how to apply Floortime coaching with each style. As a parent advocate and with so many listeners of this podcast coaching parents when they do Floortime with their clients, I thought, what a great topic!
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!A Parent’s Developmental Capacities Affect Their Parenting Style
Parenting styles have effects on the relationship between parents and children and qualify their interactions during play and other family activities of daily life, Gabriela starts out. Depending how much energy you have and on your own emotional development, you will tend to have a particular parenting style, she says. She aims to figure out which one makes you feel more secure. When you’re stressed you can become more permissive, or go the other way and become more rigid, aggressive, or behaviourally-driven, she continues, which puts a lot of stress on both parent and children.
That is, depending on our own regulation as parents, our parenting style can change, Gabriela says. So not only are we are impacted by our Functional Emotional Developmental Capacities (FEDCs), but we are also impacted by the FEDCs of our children as well. It’s a dynamic system. You cannot look at the child in isolation nor the parent in isolation, Gabriela asserts. Parents also like different types of play. Some parents find sensory motor play dysregulating, Gabriela continues, while others find being seated and doing pretend play dysregulating. That’s why it’s important to set the type of play to both the child and parents’ FEDCs.
Parenting Style: Authoritarian
Baumrind (1971) described authoritarian parents as controlling and desiring behaviour according to the parent’s beliefs, having absolute expectations and having theological motivation. They value obedience. They favour punishment. The child’s actions are judged and the parent likes to feel respected by the child. Authoritarian parents don’t encourage dialogue and feel the child should accept their words as correct. They are prescriptive and give few alternatives. They use their power and firmness and give few explanations. They are rigid. They will withdraw love with discipline, Gabriela explains. She’s interested in knowing what brings this type of parent into dysregulation.
- FEDC 1: The parents focus on their expectations and don’t take into account the child’s perspective.
- FEDC 2: This parent is always trying to show you how much they know. They are inconsistent in withdrawing affection to obtain obedience. They either have an aggressive or a poker face affect.
- FEDC 3: They are very verbal and initiate most of the interactions and pay little attention to the non verbal cues of the child and this makes for them being obstructive during play.
- FEDC 4: If the child doesn’t do what the parent says, the parent becomes very frustrated. They become very verbal and rigid and try to solve the problem. They don’t give time to the child to solve a problem. If they don’t like the play, they end the play.
- FEDC 5: If the parent has an idea in mind, such as stacking coins, they won’t allow the child to play the game a different way. They don’t recognize their own emotions so they project them on the child in the play. They talk about the consequences of not following the rules. They won’t allow the child to share their own experience.
- FEDC 6: As we know, children need a lot of narrative to understand what they’re doing. These parents, though, become very frustrated and become polarized in their judgments. They make a lot of judgments. They struggle to understand the child’s behaviour or intentions and they tend to lecture the children.
- FEDC 7: The parent will project their emotions into the play.
- FEDC 8: The parent tends to be a black-and-white thinker with polarized views.
- FEDC 9: The parent is not able to self-reflect. Parenting Style: Permissive
The permissive parenting style is not punishing, affirmative to the child’s impulses, and accepts the child’s wishes and actions. They give a lot of explanations. They avoid exercising control. They don’t motivate the child to obey and don’t define standards of conduct. They give a lot of opportunities for dialogue and are lax in rules. They are variable in their affect. The child doesn’t know what to expect because of their inconsistency. The parent projects their own experiences on the child and doesn’t provide questions to understand the different perspective of the child. They can interrupt the play because it goes against the natural consequences of intense emotions.
- FEDC 1: They tolerate the child’s regulation difficulties without containment. They are not able to co-regulate. They may lack energy and be distracted.
- FEDC 2: The parent is consistent in withdrawing affection, gives more autonomy, and has an indifferent affection towards the child’s needs of closeness. They might not be aware of what’s going on around them and their arousal might be frozen or dissociated. They are in a stressed state.
- FEDC 3: They are not contingent on the answers in the play and/or their answers are not logical. They receive the non verbal cues but don’t know what to do with them.
- FEDC 4: They allow intense emotions from their child. They don’t challenge the child or motivate them to solve problems together.
- FEDC 5: They do not bring new ideas to the game nor expand on what the child brings to the play.
- FEDC 6: They are unable to use the just-right challenge for the child.
- FEDC 7: The parent will project their emotions into the play.
- FEDC 8: The parent will dissociate and tend towards polarized thinking.
- FEDC 9: The parent is not able to self-reflect. Parenting Style: Authoritative
An authoritative parent respects the child’s lead and supports the child’s activities. Their level of arousal is more flexible. It’s a more co-regulated parenting style. They value expression, autonomy, self-determination, and discipline. They are not punitive with the child. They are more mindful. Sometimes if they are tired, stressed, or have a lot going on, they can’t be, though, Gabriela explains. This style of parents is easier for practitioners, because there is less to coach.
- FEDC 1: Parent is able to provide predictability and is aware of how they modulate their regulation including their breathing so they are more present and are able to wait and follow the child’s lead.
- FEDC 2: They show closeness, empathy and affective resonance so they are more flexible. They know when to increase or decrease the affect and when to use anticipation.
- FEDC 3: They create pauses and allow for the child to respond and pay attention to the child’s verbal and non verbal cues and are more contingent to the child’s interactions. They can use obstructive play in a timely manner. There are less barriers to communication.
- FEDC 4: The parent usually generates an environment of trust and will stay solving the problem with the child, including scaffolding their activities. They allow time for turn taking.
- FEDC 5: They understand the child’s idea, or if they don’t, they can wait and wonder about the child’s intentions. They use language appropriately to build on different ideas in the child’s play. They are empathetic and flexible to simulate ideas and emotions in the play. They won’t get mad if the child’s play becomes more aggressive.
- FEDC 6: They’ll allow aggression in play, but in a constructive way by understanding cause-and-effect relationships and understand the child’s perspective, understanding that play is fantasy where we are allowed to make mistakes. Everything is allowed in play because we know we are just playing.
- FEDC 7: Not only can they tolerate intense emotions, but they can mimic them, and support natural consequences in the play. They stay in the play and respect the individual differences of the child.
- FEDC 8: They are able to stay regulated under stress.
- FEDC 9: They are more able to reflect and their communication is more assertive. They can learn from their child. Coaching Different Parenting Styles
We need to be sensory- and trauma-informed when we coach parents so we can stop being judgmental and help them to understand themselves. We want to promote something different in them, but have them be mindful about who they are and why they are that way. It’s how we address and sustain them and how we can relate differently with them so they feel safe and secure with us as coaches.
Parenting Styles in a Floortime Framework
Gabriela says that these parenting style concepts come from more of a behavioural point of view. By reframing them through the Functional Emotional Developmental Capacities (FEDCs) and the Individual differences of the DIR Model, we can start to understand what’s happening under the surface. When coaching parents, they may not be in a space for self-reflection, she continues. You have to meet the parents where they are developmentally, as you do with the children, but in a different way. Bringing it into the Floortime framework allows us to understand how to coach the parents.
An Open Dynamic System
The process is not a developmental ladder, but a system. This is based on Dr. Stuart Shanker’s self-regulation paradigm. The parenting style is just an occupation and it depends on how much emotional and cultural support parents have, and on how much energy they have. If they have hidden stressors such as not sleeping or eating well, they won’t have energy to play or meet the child’s need for play. We might be asking too much from the parents, in this case.
When we think about co-regulation, we wonder if the parent is able to ask for support. Sometimes we have to ask them how they were raised so we can understand their core values and their own attachment styles. This is how they learned to be parents and we have to respect that. We can then see if the parent has problems with non verbal communication. How aware are they of how they express their emotions? It will affect back-and-forth communication and shared problem solving. If we understand their individual differences, it will help us plan how to coach them. Being self-reflective requires that they have this awareness, Gabriela continues.
Click on the above image to open it larger in a new window
If we see a more rigid style, such as an authoritarian parenting, we won’t see emotions. The permissive type will be overwhelmed. If we help them understand how their individual differences work, they will feel felt by us and start to understand what is happening with their child. All of the orange variables in the diagram impact everything blue in the middle of the diagram. This frame of reference has a lot of theory from Dan Siegel’s work of interpersonal neurobiology, Gabriela says. A lack of integration will affect how you will remember things, your emotion, and your sense of self, she continues, and how you use projection in playing with your child.
Seeing Another Perspective
Gabriela says that she would always respect the parent’s ideas, but she’ll also ask them to show her an apple. She’ll say tell me about an apple and a parent might reply that it’s green and round. Gabriela points out that that concept is only in your head. That’s an idea and ideas are always truth. That’s when the parent starts reflecting. “Ahhhh!” She will ask them how much they will live on their ideas? Then they realize that ideas are just a way to understand reality. That it’s your own interpretation of reality. Another reality might be that my apple is yellow.
Also, we have different interpretations of language. If I say you are ugly, can you tell me where the ugliness is? Gabriela says that she can say that I have on a black jacket and a blue shirt, but she hasn’t touched it nor seen it, so doesn’t know if it’s comfortable. She doesn’t know how I experience wearing them. We often assume things, she explains. It’s why we start wondering as practitioners and as parents, she says. It’s about wondering about the experience in other people’s minds.
This leads us to the Double Empathy Problem, Gabriela continues. The way that one person processes information might be different than how you do. What one person puts relevance on might be different than what you do. Who is not understanding whom? The therapist, the parent, or the child? We are an open system, she says.
A Non-Prescriptive Approach
There is no one prescription in DIR/Floortime, Gabriela states. Parents look for the answer to ‘fix things’, but as you learn more about Floortime, you see that it’s a larger dynamic with so many variables that all have moving parts. It is a complex system. We can simply add guidelines and put a framework around it about how to support parents and how they can support their children, including reflection to help ourselves as well. It’s very complex to understand, Gabriela says.
When we start Floortime, we need to be rigid around the Functional Emotional Developmental Capacities (FEDCs) because we need to understand the model. But once you learn more, you learn more concepts that you need to integrate in order to figure out what the family needs in that moment. It’s not a prescribed intervention, she asserts.
Dr. Neufeld said that a developmental approach is an insight approach, not a strategy-based approach. It’s about making people start to understand who they are, Gabriela suggests. We hold their hands and help them find their way, she says. It’s not my way; it’s their way, Gabriela says. We are trying to meet neurodivergent development, which is expressed differently and looks different than neurotypical development, she explains.
Tips for Parents
For parents who don’t have access to a coach and want to reflect on how they’re feeling when they play with their child, Gabriela suggests being mindful to yourself. Look at yourself with softer eyes, she says. We don’t have the perfect parenting style. This moves through time. If you need to eat, sleep, or exercise, take care of yourself otherwise you won’t face the stress you have in your daily life appropriately. Be kind with yourself, she says.
Also, be flexible. This is a learning process, Gabriela assures us. We’ll make a lot of mistakes before we find something that ‘works’. We look for our stressors. Also, be aware of the language that we use. Be careful of what you think, say, and feel, because sometimes the use of a lot of judgments will have a big impact on your emotions and thoughts, she says. Guilt is not useful, either. Give yourself time to learn, she encourages us. It’s not an easy approach. Enjoy the process. Be patient with yourself and with your child.
This week’s PRACTICE TIP:This week let’s reflect on our own parenting styles when interacting with our children.
For example: Do you notice you change parenting styles when under stress? Be mindful of when you need to take a break to regain energy and what support you require to apply more of an authoritative style.
Thank you to Gabriela Michaca for helping us understand how to meet parents where they are at by respecting their individual parenting styles. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Floortime Coaching for Different Parenting Styles appeared first on Affect Autism: We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryPhoto: Annie Spratt
The Somatosensory System and Tactile Perceptionby Affect Autism
https://affectautism.com/wp-content/uploads/2023/04/2023-04-28.mp3This Week’s Guest
Occupational Therapist Maude Le Roux is back again this week to discuss the sense of touch, or tactile perception, part of the ‘I‘, Individual differences. Maude is a Developmental, Individual differences, Relationship-based (DIR) Model Expert and Training Leader and has a DIR/Floortime clinic, A Total Approach, in Glen Mills, PA, just outside Philadelphia where I’ve brought my son many times. She is a trainer in many other modalities of remediation and can be found training at her Maude Le Roux Academyboth online and in person around the world.
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!The Somatosensory System
The somatosensory system includes components of the tactile system. It is such a very big cue for many other pieces, including how we experience ourselves as a body, or the body awareness piece, Maude says. Part of it is that you have an exterosensory system where sensory input comes in, touching on you. This alerts you that someone has touched you, or that there’s a fly on your leg, for instance. Then, there’s the proprioceptive system, which we talked about a bit in our last podcast about the vestibular system, which also plays a role in the somatosensory system. Then, there’s the interoceptive system which also plays a very significant role, Maude continues.
As an aside, Maude likes to think of the term ‘neuroception’ as used by Dr. Stephen Porges in the Polyvagal system as ‘interoception’. Dr. Porges discusses the way that the body experiences the social engagement system as the way that the body responds from the vagus nerve. Interoception is all about the vagus nerve, Maude says.
The touch system has countless receptor fields across the body, Maude continues. It is incredibly emotional. It harkens back to the in utero period with the amniotic sac around the body, she says. As the baby kicks, the baby is practicing proprioception, which is the way that your body tells you in your joints where it is and how it’s moving through space. Exteroception is all of the influences coming from the outside. For instance, if you touch your child from the side and your child yells, “Don’t touch me!“, it’s a modulation response to the system. It’s a very crude pathway, Maude explains.
There’s three big pathways in the brain for touch, Maude explains, and the ‘crude’ pathway is the one that is the more ‘tactile defensive’ pathway, and it’s used when the child hasn’t yet developed the fine discrimination pathway. Often, kids who are not finely discriminating their touch system will present with a tactile defensive system, Maude says. It doesn’t always have to, but we tend to see that frequently, she clarifies.
Discrimination
Discrimination changes the way that you look at objects, Maude explains. At the beginning of life, the baby explores everything that is within reach through the mouth. What that exploration tells the brain is incredibly important, she continues. When you have a child with touch issues, give them time to explore any object that is new, Maude advises. Let them explore the properties of it and feel what it feels like in their hands. All of that exploration is feeding that discriminatory system to understand that when they see it in the future, they can feel the touch of it.
That connection of what you’re seeing and what your touch system is doing is at a specific place in the brain called the superi colliculi and this is why when you touch something, you don’t have to see it, because you know in your mind’s eye what you’re seeing. If you don’t have that, it’s difficult for you to use a new tool in a practical way, Maude explains.
Touch, Proprioception, and Mouthing Objects
I wanted to clarify the points Maude made so far. I explained that when my son was young he craved proprioceptive input and would squeeze his body between tight places, loved being in the pool, and loved feeling snug in a lycra swing–all proprioception, involving a touch component (since these things would touch his skin). If you just take the touch piece, that’s exteroception, but if he then pushes against it, that goes into proprioception, Maude explains.
Next, a lot of parents notice that their autistic kids put everything in their mouth. Maude explains that it’s a very important phase. We wonder if it’s a negative behaviour. It has many different origins. Because touch is so connected to the emotional centers in the brain, Maude continues, putting something to the mouth, can be a reminder of Mommy’s breast or the pacifier that they used to soothe them when they were babies. They might put things to their mouth when they are stressed to self-regulate.
Maude says that if you treat mouthing, such as biting your shirt collar, as a ‘behaviour’ and try to stop it, you’ll see it pop out in a different way. Instead, think about what other soothing behaviour or activity you can replace it with. You can also work with an Occupational Therapist, Maude explains, to get the need for that behaviour to decrease over time. When you do bottom-up sensory integration therapy, you see that the child naturally starts decreasing the need to go there. Most parents that Maude sees will have already tried to stop the behaviour with some kind of behavioural strategy, but if the child gets the message that something they’re doing is ‘wrong’, Maude explains, or ‘not pleasing’, it almost increases the anxiety and the need to do it.
So, I wanted to again clarify that our children will explore objects through their mouth and put things in their mouth to self-regulate, but also do so when they are teething, and again when their adult teeth and molars come in. In addition, I asked Maude to explain what she told me at some point when my son’s speech was starting to come in more and that his senses in his mouth were awakening, so to speak, thus causing him to seek oral input yet again. This is the discriminatory part, Maude says.
There are so many proprioceptive inputs in the mouth and jaw area that give you the discrimination to speak in an articulate way, Maude explains, which calls on a lot of input to make it work and operate. Maybe your oral awareness has been limited in your development because your speech is delayed, or you don’t chew the same way that other do, or you haven’t yet developed the required postural control for the jaw to then have control to articulate (since feeding and articulation go hand-in-hand). It’s the same as fine touch sensors on your hand, Maude offers. When you are listening to your own voice and feeling the feedback when you say “p“, or “t“, it’s the same as body awareness as you feel where your tongue is.
When you start becoming more aware, the system wants to be fed.
Maude Le Roux, Floortime Occupational TherapistRegressions of Old Behaviours
Maude says that parents panic when behaviours that were gone return. The brain always remembers, she says. Regression is only possible with a blunt force brain injury or if there’s a diagnosis there that causes regression. Neuroplastic brains only move forward, she emphasizes. It’s not that you lose the skill. It’s that it goes into recess–into the subconscious–while you’re learning the newer skills. This old behaviour is coming back to support the new growth, that is also stressful to the nervous system, even though it’s positive growth.
Maude says that when we see what we think of as regression in our child, think about what has changed. Is there a new teacher? Are they sick? Are they teething? Did we lose a grandparent? Was there some additional growth? What else is happening? Your interoceptive system connects all of these experiences in the brain which gives you the emotional connection you give to the experience, Maude says. The only way our kids can understand what their body is experiencing is by going through older behaviours again, checking in if they will still be helpful. They can’t tell us, “Mommy, I feel so nervous today” Maude emphasizes.
The system is creating an adaptive response to the environment all the time.
Maude Le Roux, Floortime Occupational TherapistAn Emotional Experience
Typical children often learn to say their first words before they start moving, Maude says. Then, when they start walking, they stop talking as their body figure out this new feeling of ‘being upright’ and using their body to move through space.
And, I add, feeling their feet touching the ground: if they’re wearing socks or are barefoot, if they’re on concrete or on the grass, etc. Information that’s touching from the outside helping you move, to help you motor plan, connects to your interoception, to know how your body connects to emotion, Maude explains.
The somatosensory system is the encasement holding the body together as a unit.
Maude Le Roux, Floortime Occupational TherapistMaude shares that Dr. Ruth Lanius is a psychiatrist who does beautiful webinars on trauma, explaining this whole piece on the embodied self where she explains that your skin is your container and your separateness from others. Looking at the somatosensory system, Maude summarizes, you can look at kids who are tactile defensive, and those who are not developing enough fine discrimination to use utensils or a pencil properly, for instance, but remember that the touch system is very emotional so you’ll often see inconsistency. For instance, today the child is playing in the mud with their full body, then tomorrow they won’t play with finger paints. There’s other things at work at the same time which fools us into thinking that it’s ‘behaviour’ and that the child is not wanting to do what we, or the teacher, says.
It’s not really the messy play, it’s the representational piece of the emotional system to the messy play.
Maude Le Roux, Floortime Occupational TherapistThe somatosensory system is the one most connected to the emotional piece directly due to the link with the interoception, so we must be very careful before we judge, Maude shares. Body awareness is also the piece that takes us into self-awareness, which is both physical and emotional, and between the physical and emotional is where we get our social awareness, she explains. I told Maude I loved that she brought in the emotional component as I’ve touched on this in a few of the recent podcasts, namely with Dr. Neufeld and with Mary Beth Crawford last podcast. Emotion was the component brought in by Dr. Greenspan that is so essential to development.
A child doesn’t choose how the nervous system is going to respond. The nervous system responds because the environment is providing certain information. If the environment is providing information that feels safe and secure, and I had a good night’s sleep, and I went off to school today in a very good space, and I had a good enough nutritious breakfast, I can feel in a space where I can do things today for you which I wouldn’t have done yesterday (and the same thing in the opposite direction).
Maude Le Roux, Floortime Occupational TherapistExperiencing the Body
This somatosensory system is a beautiful system for us to harness, Maude shares, to get a child to a place of “Where am I? Who am I?” and, “Where do I belong?” Working with adult autistics, Maude works a lot with vibrations and tactile massage, with rhythm in an enveloped touch circumstance (such as in a lycra swing), and working with rhythmical movement in that ‘simply feeling’ from the vestibular into the somatosensory, into the rhythm piece (i.e., just experiencing the body). These sessions tend to be very quiet because she’s not putting in that audio and visual that often takes over everything else, but just giving the experience of the body to the individual.
Maude says that if you take the autistic who is severely impacted by some of the symptomology that we can find associated with autism, she’ll see them often on the periphery of the room, looking with a sideways glance, and they often have low muscle tone, which increases the possibility of decreased registration of somatosensory information. Their sense of body is not really separated unless they put physical space in between them and a group. It’s about finding a way in, and the somatosensory system is a huge doorway in to those client profiles, Maude asserts, as it is with everyone else, too. We all have the desire to connect, but some of us can’t communicate that as easily.
I shared with Maude that this reminded me of my case study I presented when she taught my DIR/Floortime® Basic Certificate course. I presented myself doing Floortime with a little girl in a lycra swing where I was driving a little wooden choo choo train along her back and she was so calm, enjoying the sensations, asking for more. I commented that I didn’t know anything about all this somatosensory stuff at the time. Maude says to parents listening that you don’t need to know all of this.
If you follow their lead, are queued in to what they’re giving you, and you’re queued in to following their interest, it’s a gift that keeps on giving because the child responds to what you are putting in to the Relationship. That’s why it’s so important to follow the child’s lead because they will tell you through their cues what they enjoy and want. The touch system is an intimate system. It’s a system that gives you a beautiful sense of being in this world, physically as well as emotionally, Maude concludes.
Floortime and the DIR model should be the love language of every therapist.
Maude Le Roux, Floortime Occupational TherapistThis week’s PRACTICE TIP:This week let’s be curiosity about our child’s somatosensory system and utilize deep massage to help them with their body awareness.
For example: Do you have a sheet of lycra to hang for them to swing in (or two parents each hold one side and swing the child)? Try deep massage, avoiding the joints, upon waking and going to bed at night to calm the body during the day.
Thank you to Maude Le Roux for sharing her knowledge about the somatosensory system and its importance. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post The Somatosensory System and Tactile Perception appeared first on Affect Autism: We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryPhysical Therapy is Enhanced Using a Floortime Lensby Affect Autism
https://affectautism.com/wp-content/uploads/2023/04/2023-04-17.mp3This Week’s Guest
Mary Beth Crawford is a licensed Physical therapist and Developmental, Individual differences, Relationship-based (DIR) Expert Training Leader who founded Baby Steps Therapy in 2008. Mary Beth regularly provides lectures and in-service training to numerous parent groups, and medical professionals and allied health groups on the foundations of motor development, and on her unique approach to pediatric physical therapy. She is here to expand on how Physical Therapy is enhanced using a Floortime lens.
Mary Beth was mentored by Occupational Therapist Maude Le Roux early in her career, who introduced her to DIR/Floortime. It gave her the science to the instincts she always had about development, individual differences, and relationships. Again, as said in Part 1 a few months back, her lofty goal is to bring the Floortime approach to more developmental pediatric Physical Therapists. In Physical Therapy (PT) they focus on affect, sensory, and motor. All of these synchronously develop together to optimize a child’s motor development, Mary Beth states.
Bonus Insights
DOWNLOAD KEY TAKE-AWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!The Floortime approach informs pediatric Physical Therapy and pediatric Physical Therapy can support the DIR model’s higher developmental capacities. Just like in the Floortime model, there’s some beautiful reciprocity when there is that relationship between the two approaches, married together to support development and growth for everyone.
Mary Beth Crawford, DIR/Floortime Physical TherapistJoy in Movement
Movement often brings joy to children. Mary Beth thinks about movement and Physical Therapy. The joy in a shared world where a child and adult are regulated and connected is foundational, Mary Beth emphasizes. Often we see adults come in and try to control a child’s environment by having them sit down and be sedentary, she says. If a child is seeking movement, let’s bring it in!
Research on Mirror Neurons
In our last Floortime and Physical Therapy podcast, we hit on Dr. Greenspan‘s concept of the foundation for the DIR/Floortime approach of bringing three pathways together: our motor, our sensory, and our affectual-emotional pathways. What we didn’t talk about, Mary Beth offers, is the newer research in mirror neurons which looks at the mirror neurons in our motor cortex having a relationship with the understanding motor patterns and learning motor patterns, as well as the intent and where that affect of the observer is. Triggering their mirror neurons is linked to lower brainstem levels where intent is being encoded. If we really think about that piece, Mary Beth postulates, it’s synchronous to Dr. Greenspan’s theory in the sense of how our motor and our emotional intent bring together that body awareness piece.
We know from research that kids who have regulatory challenges or who are diagnosed on the spectrum or identify as autistic have decreased mirror neuron activity, Mary Beth says. One of the things she wants to emphasize as part of the foundational capacities in Floortime and Physical Therapy is that there’s a lot of research in the Physical Therapy world about how the vestibulo-ocular reflex (VOR) and gaze stability vestibular rehab exercises can support gaze and that that gaze stability, in turn, has the capacity to support mirror neuron activity.
VOR and Gaze Stability
The vestibulo-ocular reflex (VOR) is a reflex of our vestibular system, Mary Beth explains, which is in our inner ear mechanism which includes semi-circular canals that detect rotary movements and gravitational, body/head-in-space awareness. It’s one of our major senses, she says. It’s an integrator of all of our senses. It has ascending and descending tracks, connected with our arousal, emotional regulation, and our eye muscles. So the VOR is a reflex that develops. It’s not a primitive reflex that gets integrated. It’s a different type of reflex that stabilizes our gaze as we move through space.
What the research shows now, Mary Beth says, is that kids who have regulatory challenges and/or kids who might be relatively shifted into hyperarousal (fight/flight), have more challenges with their gaze stability. If we think about that, Mary Beth suggests, marrying that with some vestibular rehab might really support the child’s capacity to take in that nonverbal/preverbal emotional cueing, which we know–as Floortimers–is so foundational to all of the higher capacities, especially in the fourth capacity where we start to use our preverbal communication and some words might start to come in.
Synchronizing that emotional signalling in a shared world is the foundation for developing motor sequencing and developing the capacity to hold on to our ideas while we’re processing the ideas of our play partner, and while we’re navigating emotional reactivity associated with some boundaries, all while maintaining our regulation while we’re negotiating the play partner in capacity four, Mary Beth says. All of this requires a lot, and one of the foundations is having the gaze stability and that intact vestibulo-ocular reflex (VOR), which supports this process.
VOR Rehab Exercises to Support Gaze Stability
Mary Beth says there are VOR rehab exercises such as holding your finger in front of your face and turning your head left to right while keeping your gaze on that finger. In many of our kids prone to hyperarousal, the eyes and the head move together. This means that when you’re moving in space it leads to a couple of things, Mary Beth explains. First, you might have an under responsiveness to the vestibular system. These kids need a lot of movement. So, one of the first things is, she continues, to provide a lot of opportunities for movement because that’s what’s going to harness that connection and that relationship, which is a critical piece to expand into our higher capacities. So, join in the movement, she says!
This is where it gets tricky, Mary Beth suggests, because a Physical Therapist might say to do 50 repetitions of a gaze stability movement, which works if two people are having fun in a shared world and it’s not triggering a stress response. With our kids, to work on the VOR, we might want to come in and tailor the environment, as a Floortimer, to set up some swing activities or some bean bag games where there’s a lot of crossing the midline, and tracking activities with blocks.
Mary Beth shared a video at the recent ICDL conference, where she presented on this topic, of a little guy in a swing where he was well supported and getting a lot of movement. She set up blocks on either side and he was able to turn around and have a great time tossing the blocks off the swing and not knowing that at the same time he was really working on his gaze stability with this really fun activity.
Gaze Stability and Eye ContactWhat’s the relationship between gaze stability and eye contact? Mary Beth says we need more research on it. There is a study showing that atypical gaze patterns are linked to decrease mirror neuron activity. By conjecture, if we strengthen the ability to hold gaze while moving in space, maybe we can support the mirror neuron activity. The best way to support it is through our movement, through our affect, and through activities which will give a positive feedback system in developmental growth. We connect with one another through our eyes, ears, and feeling one another. It’s why we follow the lead to get that emotional interest so we practice all these skills when the child is interested to facilitate and support the development of these skills.
Gaze Stability and Emotional Signalling
I asked Mary Beth if gaze stability improves with practice. She believes that it does, but there isn’t a lot in the literature on VOR rehab on kids with regulatory challenges or autism diagnoses. There is a lot of research on gaze stability being improved with vestibular injury, concussion rehab, and central nervous system challenges that includes working on the gaze stability and the ocular motor musculature because the muscles around the eyes can be strengthened.
Over time, these exercises can be supportive of the emotional signalling piece and having an improved gaze. It’s an area that needs more research for our kids, but from Mary Beth’s clinical observations, working on gaze stability and being cognizant of supporting that, while supporting foundational capacities, can support that ability to emotionally signal, and develop the theory of mind piece, in terms of understanding our own selves, our own bodies and motor planning, and then being able to understand our play partner’s.
The Use of Affect
I wanted to emphasize a couple of things Mary Beth said. Often we bring our kids to appointments and tell them to do something and they don’t want to do it. That’s why in Floortime, we make it fun to do. That’s supporting the early capacities of regulation, engagement, and circles of communication. If they get distressed, they’re not having fun. So, like Occupational Therapist Keith Landherr shared with us, you don’t just put a kid in a swing; you interact with them and make it fun, which supports those early capacities.
Mary Beth also talked about emotional signalling, which is one of the key components of Dr. Greenspan’s theory. Gene Christian and I did a podcast about preverbal affective signalling that gave Mary Beth words to what she believed, and now, she says, we have science to support it with the mirror neurons research that supports that brilliant hunch that Dr. Greenspan had. In his books, Mary Beth says, he talks about how somehow there was a disconnect of the emotional intent, and meaning fell off the motor pathways. They weren’t synchronously developing together.
Dr. Greenspan believed, and Floortimers believe, too, that with the right approach, and with our attuning and supporting these individual differences of our play partners, that that intent can meet the praxis piece. This was his Affect Diathesis Hypothesis, I added, which was my first ever blog post and why this site is called Affect Autism. Unless you can understand what’s going on in yourself and your intent, it’s very difficult to understand that in someone else, Mary Beth asserts.
Theory of Mind
As an aside, when Dr. Simon Baron-Cohen said that autistics don’t have theory of mind, it was very controversial and many autistic self-advocates said that was not true and in fact it’s the neurotypicals who often don’t show theory of mind in understanding the autistic experience–which I totally agree with. What Mary Beth and I talk about here is that this process–regardless if you’re autistic or not–is developmental, as I discussed with Occupational Therapist Maude Le Roux in another podcast. If our children are not understanding in their own body what they are feeling, and their intent, they will be delayed in developing theory of mind compared with others who are typically developing.
I shared how my son is almost 14 and will interrupt me when I’m talking to him with something completely unrelated, and is not expressing that he understands when I am angry or grumpy unless I explicity use affect, and state that I am feeling angry. He loves that affect piece when I do express it and he’ll ask, “Are you angry, Mama? Be angry!” and then enjoys me expressing that I am angry. Mary Beth said that we need to stay there with a child in that emotion. You have to feel and experience anger to know what it is. You can’t teach it. It has to be mirrored by us by our co-regulator, Mary Beth states.
Co-Regulating
For kids to really experience what’s going on, as the co-regulator in Floortime, what we want to do is match to a degree–not in a scary way that triggers fight-flight–their intense emotion. We don’t want to say, “There, there…it’s ok“. That is confusing for a child who is feeling overwhelmed by their emotions. We want to genuinely match the affect with, “Arg! You’re feeling so scared!” without telling them how they are feeling, and then say, “and that’s ok” and co-regulate. We don’t want to co-regulate before we match it, Mary Beth suggests. She says we might also want to match it and say, “I’m scared!” so the child can start to understand through our mirroring what’s going on with their feelings. Then we co-regulate.
If the child’s gaze isn’t stable, Mary Beth says, they’re not really taking in our emotional signalling in the non-verbal sense, so it might be confusing for them, and perpetuate this challenge with feeling and experiencing because they’re not really hitting those mirror neurons enough when we’re mirroring. They might need us to hold the facial expressions for a lot longer, and use more exaggerated affect as they’re developing this, because their mirror neurons are firing, but it’s at a lower amplitude in the firing. Let’s stay in this experience, Mary Beth suggests, and provide the movement piece needed to get there, and let’s harness all the pathways together.
We do presume the highest competence, Mary Beth asserts, and we do listen to self-advocates who have tremendous empathy and say that they shut down because they are feeling too much and need to take some time to process it all. I added that when I do hold a negative emotion, my son will sometimes get agitated and wants me to be happy and says, “Be happy, Mama!” Mary Beth said that he’s potentially not comfortable with his own anger. You can then punch a pillow or scream outside. If he’s really there with me, this shows him the process of then feeling, “Ahhh, I feel better.“
Let’s bring the motor piece back
He is starting to label his feelings, though, and he’ll now say, “I’m getting angry, Mama! I want to hit you” so I’ll say, “Arrrrg! We can go hit a pillow or stomp our feet!” as I’m aggressively stomping my feet to show him. That is where motor, sensory and affect meet, Mary Beth says, where you bring in the movement piece to express your emotion. It helps the child make the connections. It’s hard for all of us to process our emotions without movement. There are motor patterns wired for all of us to express our emotions. It helps our kids feel and experience the emotions when we bring in the movement.
My son is starting to use affect in his voice and on his face when he expresses his anger, along with using motor expression of slamming his fists down, or sometimes throwing or breaking things. I will say to him that it’s ok to feel angry, but it’s not ok to break things and then demonstrate how to punch a pillow or stomp his feet, so I wanted to emphasize that Mary Beth said to demonstrate the motor movement for them. Also, though, when my son is excited he will flap his arms vigorously which is a motor expression of his positive emotion.
I also wanted to point out the confusion when we talk about Floortime being joyful and what we’re saying about negative emotions. When we look at the Basic Chart of the Functional Emotional Developmental Capacities (FEDCs),–acknowledging that we are all managing our capacities all day long as we move back and forth from being dysregulated when we get cut off in traffic, for instance, to being regulated and functioning in our higher capacities–we want to know if our children can maintain connection when they’re distressed. Many parents say their kids meltdown when distressed and they can no longer maintain engagement or a back-and-forth interaction.
When we talk about shared joy and making it playful, I wanted to stress that we aren’t trying to suppress negative emotions. I think that sometimes confuses people who think it always has to be fun and happy. As Dr. Gil Tippy says, Floortime isn’t always joyful. We have to work through the negative emotions, but as I discussed with Dr. Gordon Neufeld a few podcasts ago, bring it into a playful realm. When you can bring it into the mode of play, it can make it less distressing. Mary Beth says this speaks to the newer science of motor learning in physical therapy and what parts of the brains are activated in the phases of motor learning.
There are strong links between our vestibular and limbic systems, she states. Being engaged and sustaining that attention is part of the novel motor piece. If we’re experiencing those big emotions, we’re probably not learning a novel task. Choosing play is more foundational to novel motor learning experiences, however adaptation of our motor learning and planning, or the generalization of our new skills, doesn’t come until we have experienced the full wide range of emotions with these novel motor plans, Mary Beth explains.
Higher order capacities
Moving from FEDC 3 where you have joyful reciprocity to being able to handle boundaries in FEDC 4, and the reality principle that Dr. Greenspan talked about, is moving towards the symbolic. The only way around FEDC 4 is through it, Mary Beth says. You have to experience–and feel, Dr. Neufeld would say–a wide range of emotions when all these things come up, and feel validated for those emotions. You have to experience the capacity to feel regulated first in co-regulation, then in self regulation. That is the way to go from FEDC 4 into that symbolic thinking realm in FEDC 5, Mary Beth explains.
Expressing “I’m angry” has a symbolic meaning because you are using words as symbols (as long as you are not just repeating by memory without experiencing the feeling). You are sustaining affect, co-regulation, and the interaction to create the higher level thinking capacities, Mary Beth asserts. I mentioned that early on in Affect Autism I did a series of blogs of stumbling blocks. Dr. Greenspan really gave us tools of how to strengthen the capacities. Every single one said to strengthen the previous capacity to get better at the subsequent one. Each capacity will be so much more robust when the earlier capacities are strengthened.
The capacity to develop novel motor learning requires an awareness of the new task, Mary Beth says. That’s why in Floortime we talk about regulation and co-regulation. We can access those higher brain centers much more readily when we’re regulated. We can learn the new novel task. Once that motor plan becomes automatic, then less cognitive resources are required as we use implicit knowledge.
Sleep
What’s interesting with the vestibular rehab and eye movement activity is that we know that motor learning and sensory processing continues while we’re sleeping, Mary Beth says, and that sleep is an important aspect of the consolidation and retention phase of motor learning. It makes Mary Beth wonder about kids who struggle to fall sleep or stay asleep and struggle to keep motor plans they’ve learned over time. A big part of sleep is the phases of sleep including rapid eye movement (REM). Mary Beth wonders how robust the eye movements are during sleep for a child who doesn’t register vestibular movement when they’re awake.
As an aside, Occupational Therapist Maude Le Roux and I talked about developmental growth spurts and how when you’re synthesizing new learning, our other skills might temporarily be lost.
Reflection
Autistic self-advocate Mickey Rowe mentioned in the last podcast that because he needed lots of vestibular input when he was younger, he loved walking on stilts and how going to the theatre he was able to witness rich, emotional interactions that helped him develop his own capacity to act. When we’re able to process emotions at a bit of distance with stuffed animals, too, in play, Mary Beth says. Processing the gamut of our emotions in FEDC 4, she says, is giving space to process those emotions. Whether it’s ‘up high’ space (i.e., upregulated), ‘no response’ space, or ‘the distance’ space in play, and not internalizing it, can all be great for emotional processing, Mary Beth says.
Because he didn’t speak, Mickey also said that people talked to him like he was a baby, but at the theatre, people spoke to him the same as they did to other people. We still want to interact in a natural way with our clients in Floortime, especially when children aren’t toddlers anymore. Mary Beth says that we all would benefit from Improv classes. Also, she says that the more we reflect on our own practice, the better we get at it. We don’t always get it right. It’s a constant process of giving it your best shot then reflecting. We all benefit from reflective practice.
Floortime Helps you Meet your Physical Therapy Goals
Mary Beth wants all pediatric Physical Therapists to know that using the DIR/Floortime approach is the way for you to meet your goals such as bike riding, stair climbing, etc. Understand the ‘I‘ (Individual differences) of your clients and use the tenets of DIR/Floortime. When you attune to yourself, you attune to the child and create a Relationship with the client and the family, and truly join the child in their interest. These are the ways to meet your goals through Physical Therapy including the bilateral integration and jumping jacks.
Science has fully backed the notion that newer models for motor learning include affect states. No affective states were involved in understanding the science of motor learning when Mary Beth went to school, but now there’s a new model: Optimizing the Performance through Intrinsic Motivation and Intention for Learning theory combines social, cognitive, affective, and motor behaviour, which Floortimers understand. We now have research now on the importance of incorporating affective states when you’re learning new motor tasks!
The science of motor learning really does support using a Floortime approach to Physical Therapy, meaning being aware of and validating affective states–not discounting or ignoring them–especially when it’s difficult, Mary Beth says. It’s really important to perseverance, even though it might involve more tantrums, more self-awareness and more co-regulation. Staying with those feelings and those challenges will get us into those bilateral tasks that are challenging, Mary Beth encourages.
Mary Beth continues that there’s so much research now that shows that coordinating the two sides of the body really coordinates the two sides of the brain to activate learning memory and other higher brain processes including linking bilateral integration in the body, supporting visualization in space, and developing and linking logical bridges in higher capacities. When the body is crossing the midline and doing these higher level coordination tasks, science shows that it supports the higher level cognitive skills that teachers and parents are looking for.
Mary Beth believes that it is the responsibility of all the pediatric Physical Therapists to be aware that these are skills that are foundational for all the foundational capacities–not just for the motor track. It’s about the affective, sensory, and motor pieces all working all together, she says. Mary Beth likes the analogy of trying a Calculus challenge if you can’t add or subtract. You need all three systems working together.
Mirror neuron research has shown that in the premotor cortex of the brain, the same area lights up when we’re doing or watching someone do a motor activity. So, when we are modelling and making things look fun and showing things in a fun way, we’re also working on connecting the awareness of our motor task with what our intention is. We need to go back to our building blocks. Jumping jacks might be challenging for a child, so developmentally you might go down in your demands on the gross motor skills.
We don’t ever ever want to force or push because the truth is that when you’re using this model, kids reach their higher capacities when they’re supported at the foundations of their sensory, motor, and emotional systems.
Mary Beth Crawford, DIR/Floortime Physical TherapistSummary
Mary Beth emphasizes that in Floortime, we understand all behaviours as communication and respect someone’s agency in communicating with their body or their words. When they are ready, making things fun like Freeze Dance, Simon Says, and other games, makes those higher level bilateral activities instrinsically more fun, she says. Every child is so different, so understanding each individual difference and how to attune to, and be curious about, each child you have the honour of playing with will have a profound impact of a Physical Therapist’s awareness of their own practice and their outcome. Creating those ‘just-right’ interactions is what we’re doing as Floortimers.
This week’s PRACTICE TIP:This week let’s model expressing our emotions through movement for our children.
For example: If your child is angry, demonstrate being angry by stomping your feet and exclaiming slowly, “I’m so angry!” with an angry face. If they are excited, you can smile and show a lot of positive affect and jump up, and down if you would like, saying, “I am so excited!“.
Thank you to Mary Beth for elaborating in more detail how Physical Therapy is enhanced by using a DIR/Floortime lens and approach to look at overall development of the affect, sensory, and motor systems. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Stay tuned for the next podcast in two weeks.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Physical Therapy is Enhanced Using a Floortime Lens appeared first on Affect Autism: We chose play, joy every day.
Our Differences are Our Strengthsby Affect Autism
https://affectautism.com/wp-content/uploads/2023/04/2023-03-31.mp3Bonus Insights FREE this week!
This Week’s Guest
This week I’m speaking with autistic self-advocate, Mickey Rowe, who has had a prolific and varied career as an actor, director, consultant, and public speaker. He is autistic and legally blind. He believes that our differences are our strengths. Mickey was our keynote speaker at ICDL’s 27th NYC Conference last month and he blew me away with his nuggets of wisdom and inspiration. I’m thrilled for you to get to know him a bit on this podcast!
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Free this week! Just enter your email.
Who is Mickey Rowe?
Mickey was the first autistic actor to play Christopher Boone, the lead autistic character in the play The Curious Incident of the Dog in the Nighttime. He says that he was always really drawn to theatre, playing characters, and putting on costumes growing up. He would frequently wear costumes every time he left the house. He does really well when he has really clear roles and guidelines telling him how to behave and what’s expected of him in any interactions, so doing a podcast or a keynote speaking is super easy for him since the rules are very clear, logical, and laid out versus if he ran into me on the street spontaneously.
Mickey says that when he got to dress up in a costume, it gave him a lens through which he could see his interactions.
The Curious Incident of the Dog in the Nighttime.Chele and Khylil talked about The Curious Incident of the Dog in the Nighttime in our recent podcast.. It’s a fun fictional adventure story, Mickey says, but don’t take it as a story about autism because it’s written by someone who wasn’t autistic and said they did no research into autism. It’s about a 16-year-old boy who found his neighbour’s dog dead, having been killed with a pitchfork. Since he’s there petting it when the police arrive, and because he’s autistic and is acting in ways that are different, the police blame him. His special interest is Sherlock Holmes, so he decides he’ll become a detective and figure out who killed the dog. It becomes a huge adventure that takes him all over England on trains and on the tube in London and learning surprising discoveries about his family.
He became obsessed with stilt walking in elementary school and it lead him to theatre. Everyone knew that stilt walking was his thing, so he tried out for a stilt walking ostrich role for The Magic Flute at the Seattle Opera. He probably only weighed 50 pounds at the time, and he did not get it, but it was the start to his acting career. Mickey says his body needs lots of extra proprioceptive input, so he always sleeps with a weighted blanket, for instance, to help his body know where it is in space. Stilt walking did that for him because every single movement was such a big sensation.
His Love for Theatre
Mickey was in Special Education with speech therapy and occupational therapy. He had no friends. He spent all of his breaks pacing the hallways, not knowing how to approach people or how to start a conversation. He would throw away his packed lunch and pace until lunch break ended. I asked him if he was hungry. Mickey said he guesses he was, but he didn’t know what to do. He couldn’t figure out where to sit or who to sit with to eat his lunch and nobody ever invited him to sit with them. So he did that all through high school.
Mickey’s grandmother had a subscription to Seattle Children’s Theatre. He didn’t have many social interactions growing up and because people could tell he was autistic, they would raise their voice really high and talk to him like he was a young child. When he saw shows at the theatre, though, he got to witness all of these rich social interactions in a way that felt really safe for him. Nothing was being asked of him. He just had to sit and passively got to be a part of all of these rich, nuanced social interactions, he shares.
Also, Mickey adds, when the actors spoke to the audience, they spoke to him like they spoke to everyone else, so that made theatre feel like a safe, special, magical place for him. The social interactions in theatre made him feel like he was participating. The audience is welcomed into the social interactions, lives, and experiences. I commented that I should bring my son to some theatre and Mickey agreed!
The major thing he hears after speaking with parents at sensory-friendly theatre performances is how parents would have never brought their child if not for the ‘sensory-friendly’ performance because they would have been so scared. Mickey jokes that the sensory-friendly performances are really for the parents and other people attending than for the autistic folks who will stim and do what they’re going to do regardless of the type of performance.
Mickey says at one of the performances he was at, a non-speaking autistic audience member was so riveted by the performance, that he spoke more than anyone had ever heard before. Mickey believes it’s because of what he heard at our recent DIR conference: that the safe, structured environment could contain his heightened sensory experiences without him being overloaded or feeling threatened.
Mickey’s Childhood
Mickey was non-speaking when he was younger. He lived with his grandparents for much of the time, and he loved interacting with all of the sea animals, including the river otters that lived under the porch. Rather than non-autistic people modifying their communication, Mickey finds that pressure is often put on the autistic person to communicate in a way that makes it convenient for the neurotypical person. He had pressure on him to communicate in this way and people around him felt they couldn’t connect with him if he didn’t communicate like that. But the river otters and other animals felt connected to him whether he spoke or not.
Mickey started speaking in elementary school in a way that only his grandparents could understand, so he started speech therapy at school and he hated it. It was really hard and challenging and not fun for him, but things started to click around fourth or fifth grade, he shares. He also had a lot of Occupational Therapy during middle school. But, his parents never told him he was autistic because they felt so much stigma around the label. He had an IEP with accommodations related to autism, but his parents told him that he just had his IEP only for his eyesight.
Mickey’s Autism Diagnosis
When Mickey was in college where he studied theatre, there were no more services. He had a therapist asking him if he was autistic. They referred him to the University of Washington Adult Autism Clinic where he received his diagnosis. Most places don’t have something like that, so he feels lucky that he was able to get that diagnosis. They also let him know that he likely wasn’t receiving speech and occupational therapy for his eyesight.
It felt really good to get his diagnosis, he says. It’s not like he didn’t know he was different, that he was in special education, and that others spoke differently to him than they did to others. He just thought it was him and that he was stupid or bad. The diagnosis validated who he was and it freed him up to start learning about himself more. It made him realize there are others in the world like him.
Talking to Your Child about their Autism
Parents often ask Mickey if or when they should tell their children that they are autistic. Every family is different, but Mickey suggests mentioning it in small nonchalant ways frequently so it never had to be this big conversation. An example Mickey gives is when his autistic child came inside and said that he really likes playing soccer with his brothers, but he really hates how much noise they make.
Mickey acknowledged that that makes so much sense because he is autistic and sometimes they experience sounds in a more extreme way than others do. Mickey asked, “You know those headphones you have upstairs because you’re autistic? Why don’t you go put those on and then you can go back out there and play soccer with them?” This makes it easier, Mickey explains, than sitting them down one time. You can also discuss what things will be challenging for them and talk about what they’re good at, Mickey says.
Our Differences are Our Strengths
When we don’t realize that our differences are our strengths, Mickey says, or when we forget that our differences are our strengths and that the things that make your neighbour so different from you are his strengths, and when we don’t celebrate that, the alternative is that we feel sometimes shame around the things that make us different, or we feel maybe like the things that make us different can be burdens, Mickey continues. He thinks this truly leads to so much genuine, real harm and danger.
The Danger in Shame
Growing up, Mickey’s mother and grandpa would always tell him he’d be really lucky if he found anyone who would want to marry him. When his mother would talk to friends on the phone she would say that the first pancake never turns out, about Mickey being the older child. When you hear this your whole life, Mickey says, you internalize these things. He believed that he’d be lucky if anyone wanted to marry him. So when he was 23 and someone did express interest in wanting to date and marry him, he thought this was the only time it would ever happen, so he said yes.
This lead Mickey into having an abusive relationship, and having to escape that abusive relationship in the middle of the night with his autistic kid in hand. When the abuse was just on him, he thought it was just something he had to accept and what marriage was for him, and that this is why you make commitments to people. You put up with things. But when the abuse turned to the younger child, that was when Mickey realized he had to get out. Mickey now has a very busy house with his new wife with two children each in their blended family and is very happy.
It’s just so important to remember that kids are always listening to the things we say, and that there’s truly so much real danger and real harm in ever making people feel shame around their differences or making people feel like they are burdens because of their differences, and there’s so much to be gained by celebrating our differences and by celebrating all of the things that make us different from each other.
Mickey Rowe, Autistic Self-AdvocateProblem-Solving and Executive Function
I asked Mickey about helping our kids learn how to problem solve. He mentioned throwing out his lunch in high school everyday and just pacing the hallways because he didn’t know where to sit to eat his lunch or how to ask anyone to sit with them. In DIR/Floortime, the early intervention is really about getting that engagement and circles of communication in a way that suits the child, and we’re always following the child’s lead on that, but really, the heart of Floortime is pushing past that and getting into the higher capacities of thinking and problem-solving. I asked Mickey when his self-awareness kicked in and when he understood that he could figure something out.
It depends on the day and the situation, Mickey says. When he was performing with The Curious Incident of the Dog in the Nighttime, he lived in a hotel with the rest of the cast and they had a company car or two for the cast, but he didn’t have a driver’s license. He was in his late 20s. He was working six days per week and Mondays were the day off, he explains. He would go with the cast to the grocery store and he would tell himself to get one week’s worth of food and leave with a box of Oreos, two apples and a box of granola bars, then realize that was not a whole week’s worth of food. The same thing happened each week. He’d get one Trader Joe’s frozen dinner, a box of Oreos, and something else.
Knowledge about yourself is power, and there is a place for everyone in this world.
Mickey Rowe, Autistic Self-AdvocateExecutive function is one of the biggest challenges in Mickey’s life right now, he says. He hires cleaners to come to the house to accommodate him and his family to function at their best. When he was acting in The Curious Incident of the Dog in the Nighttime, he realized that he functioned best by buying a $5 sandwich for breakfast and lunch at Starbucks every day. It relieved so much stress and pressure for him trying to worry about that executive function to then be free to do other things. Something that has helped him immensely as an adult, he continues, is to say that if he’s still struggling with these things now, it’s alright to find other workarounds instead of trying to force his brain to do something it’s not good at, even if it costs more money.
It’s expensive being disabled, Mickey shares. The unemployment rate for disabled people is about 85 percent and even if you can get employment, there is no federal minimum wage for a disabled person. You can legally be paid as little as a few pennies per hour in many states if you have a developmental disability like autism. Hundreds of thousands of disabled people in the United States are paid sub-minimum wage and the average is about a dollar an hour. So they’re less employed, paid less, and it’s more expensive being disabled, Mickey laments.
Advocating for what we need
This reminded me of another quote from from Mickey’s ICDL’s Conference presentation: “Always feel confident in asking for what you need. When we advocate for ourselves, we are actually helping everyone.” Mickey says that when we advocate for ourselves or our kids, it can feel like we’re being burdens or being selfish. We are not being a burden or being selfish when we advocate for ourselves or for our kids, Mickey assures. The deaf and hard of hearing community had to advocate so hard for captions to be put on YouTube videos. It makes it easier for everyone, Mickey continues, because we can all now watch a video without headphones and know what’s happening.
It makes everyone’s lives easier. Curb cuts in the sidewalks for those with mobility disabilities make our lives easier if we are pushing a child in a stroller, for instance. Neurodiversity is the same way. If we can make spaces feel safe and accessible for autistic people, it will only help everyone. Things that help autistic people make things easier for everyone. We feel so much discomfort around disability, he says. There’s nothing bad about the things that make us different. We can collaborate better with those who are different who will think about things from different angles and think about how to approach a problem differently.
There is so much danger in feeling that your differences are wrong.
Mickey Rowe, Autistic self-advocateFeeling Valued Every Day
Mickey asked at ICDL’s Conference, “How can we make sure that our students feel valued every day?” He worked for four years in college to get rid of the tension and movement in his hands otherwise he was told he’d never get hired. After four years he got pretty good at it, but when he got the role in The Curious Incident of the Dog in the Nighttime, he got to be himself and could let that tension back in and he was being valued for being him.
Listening to Self-Advocates
I asked Mickey about his opinion on self advocates speaking for autistics who can’t speak for themselves, which some people refer to as ‘low functioning‘. Parents sometimes say that they don’t speak for their children. Mickey would encourage those parents to take to TikTok and Instagram because there is such a large community of self-advocates who wouldn’t have had platforms before. Follow a bunch of non speaking autistic self-advocates, he suggests. They are doing awesome work.
The autistic community tends to say the same things and agree on most things, Mickey states, but it’s good for parents to hear things from someone who more resembles their child. We’re all on the same team, trying to accomplish the same goals, he asserts. Also, he warns, be careful about comparing your seven- or eight-year-old to what a thirty-year-old self-advocate is doing. If people were not autistic, Mickey would not go up to a forty-year-old and say that you are nothing like my five-year-old. Know that every autistic child is going to grow up to become an autistic adult, Mickey says.
When your child is an autistic adult, Mickey continues, I think you would really want your child’s voice to be heard when they speak about their lived experience and have people value what they’re saying. When we listen to autistic adults we show them that their voices are valuable and valued so when your child is an adult, they will realize their voice can be listened to as well, Mickey says. It’s so powerful for autistic young people to see their parents listening to autistic adult voices, whether they’re speaking or non speaking adults, Mickey assures.
Presuming Potential
When Mickey was non speaking, people assumed he couldn’t understand so said things about him that weren’t flattering in front of him. Always assume competency, Mickey says. Today, those using AAC all say the same thing: that they could understand everything people said around them. Value your child and set that expectation of value for them so that when they’re an adult they won’t let others speak for them, Mickey advises. To be a parent of an autistic child, it is a valid identity, Mickey says, but it is not the same lived experience or identity as your child. They’re two different hats, Mickey says.
It’s not devaluing how valuable your role is as a parent of an autistic child that you know your child more than anyone else, Mickey states. But being autistic is another identity. For parents of non speaking children who are young, Mickey says to assume they understand, encourage them to find alternate communication, and validate that communication to be as valuable as spoken English! Find them AAC and help them learn it to communicate. It’s just as valid as spoken communication, Mickey asserts.
Mickey has heard from parents how scared they are when their non speaking children start to use keyboards to speak. When you don’t assume competency then see the child speaking, it can be terrifying, Mickey says. It was more hurtful for the parent to realize how intelligent the child is and that they missed it, he believes. Language is so important for all kids to be able to communicate their thoughts, so start with AAC or a keyboard or something, he says, whether it’s sign language or pointing at things.
Mickey says to find a way you can communicate with your child and value it–not as a temporary thing until they speak verbally. That is, don’t treat the AAC as a lesser than/secondary stop on the way to the end goal. Treat it as equally valuable.
Do You See the Potential in Your Child?
This brought me to the last point I wanted to make that I brought up in my presentation with Emily Gouws–who didn’t speak until he was 15–and ICDL’s CEO, Jeff Guenzel at the recent ICDL Conference. I asked is we, as parents, see the potential in our own kids. Do we? We’ve heard so much about their deficits, sometimes we can internalize that. Mickey also mentioned how much he liked the points brought up at the conference around moving towards the social model of disability. He says that we just need society to be more accessible and supportive rather than thinking autistics need to be ‘fixed’.
I was happy Mickey enjoyed hearing about DIR/Floortime and all we’re doing to make the things he’s advocating for a reality, and Mickey acknowledged that we are doing just that. You can learn more about Mickey, his work, and how to hire him as a speaker or consultant at his website.
This week’s PRACTICE TIP:This week let’s realize that our children are listening to everything we say and intentionally make an effort to be cognizant of what we say in front of them or about them.
For example: When speaking about your child in their presence to others–whether it be therapists, teachers, friends, or family, think about how we are making our child feel. Speak about their strengths, acknowledge the supports they require versus talking about things they cannot do or face challenges doing. Be the enthusiastic cheer leader that your child needs to realize they are valued by you for who they are.
A big thank you to Mickey Rowe for speaking with me to share his life experiences and nuggets of wisdom with us, including his advice to parents. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Our Differences are Our Strengths appeared first on Affect Autism: We chose play, joy every day.
Photo: Rhendi Rukmana
What is DIR?What is Floortime?DIR GlossaryAutism and Medication: Part 2by Affect Autism
https://affectautism.com/wp-content/uploads/2023/03/2023-03-18.mp3This Week’s Topic
We’re back this week with Dr. Joshua Feder, a child and family psychiatrist in Solana Beach, California.
We did a podcast on autism and medication a few years back and this is part 2 because there is a new Child Medication Fact Book for Psychiatric Practice, Second Edition that just came out.
Dr. Feder is here to tell us the purpose of the book and to walk us through the medication algorithms in it.
This Week’s GuestDr. Joshua Feder is a child and family psychiatrist using the Developmental, Individual differences, Relationship-based (DIR) model as an DIR Expert, and an advocate with the DIR Coalition of California. He has conducted neutral, non-industry based pharmaceutical research funded by the National Institutes of Health (NIH), and is editor and chief of the Carlat Child Psychiatry Report, a non-pharma and transparency-based newsletter and continuing education vehicle for child psychiatrists, helping craft training for child psychiatry in the use of medications.
Dr. Feder is also an adjunct faculty with Fielding Graduate University in the PhD program in Infant and Early Childhood Development where he also heads up the Infant and Early Childhood Development Research Incubator. His latest role is the Medical Director of Positive Development, which we also did a podcast on!
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!The New Child Medication Fact Book
The difference between the Child Medication Fact Book for Psychiatric Practice, Second Edition compared to the one that came out a few years ago, Dr. Feder begins, is that they don’t use the term ‘Autism Spectrum Disorder’ and only use the term, ‘autism’ because instead of talking about ‘treatment’, they talk about ‘support’. Dr. Feder acknowledges there are mentions of disorders in the book such as Depression or Obsessive Compulsive Disorder (OCD) and Attention Deficit Hyperactivity Disorder (ADHD), which he thinks should fall more under neurodiversity rather than a disorder, but he couldn’t get that past the publisher.
I mentioned the podcast I did about ADHD, a VAST topic, given that Dr. Ned Hallowell would like to change the label of ADHD to VAST, and Dr. Feder shared that he interviewed both Dr. Ned and Dr. Russell Barkley about ADHD for the CARLAT podcast (which is now up to 3 million downloads) within a few months of each other for one of the issues of the child psychiatry report. Dr. Ned was very positive and optimistic talking about making it all work by partnering up with the right person so it all works and things like that while Dr. Barkley was more doom, suggesting that if you don’t treat it, you’ll have a higher incidence of diabetes, obesity, and hypertension, etc., and your lifespan will be significantly shorter. It was such a contrast from Dr. Ned’s outlook, Dr. Feder shared.
Dr. Feder says we’re talking about diversity that impacts quality of life which affects autism as well, and getting back to medication, this new book puts treatment algorithms in for whoever is diagnosing–whether it be doctors or nurse practitioners, etc.–to give them an idea of what might be a good path to follow. It’s not a cook book, because everyone is different, but what Dr. Feder didn’t want people doing was jumping right to the FDA approved medications for irritability and autism without considering other options.
The Current Situation
Most autistics have some sort of irritability, because it’s hard to be an octagonal peg fitting into round holes all day, Dr. Feder jokes. But if you go to a doctor, all they have is what’s legally marketable for the problem of irritability and dysregulation, which is Risperdal or Aripiprazole, and that’s what insurance will pay for. Sometimes they’re very helpful, and even life saving, but the side effects are very serious, including neurotoxicity, Dr. Feder warns.
You do have brain changes over time with these medications, Dr. Feder explains, and you have to watch for that. Some of these changes can include catatonia or a muscle stiffness, neuromalignant syndrome which may be associated with Catatonia, Tardive Dyskinesia, which causes new or weird movements that don’t go away, which isn’t good either, he says, or more commonly, weight gain which can lead to early onset diabetes or hypertension. And while they can do things to prevent some of these side effects, shouldn’t we be trying to prevent them, he asks. And that’s the point of the algorithm, Dr. Feder states.
Most of the algorithms in the book start with non pharmacological things you can do.
Dr. Joshua Feder, Child PsychiatristThe Alternatives
In our case with autism, Dr. Feder says we need to look at sensory motor and communication difficulties first, and use developmental, relationship-based approaches where we’re using ourselves and our relationships to help people to be calm, connected, and in a reasonable flow of meaningful interaction that helps you build your problem-solving skills so you’re not as irritable as much of the time. And even if you’re going to a doctor to get something to help you out, Dr. Feder says there are supplements that can sometimes be very helpful and there are milder medications that are often helpful.
For example, he offers, many people on the spectrum have ADHD symptoms and the most recent research shows that most ADHD medications work just as well for autistic people as for non-autistic people for attention and focus, which can help you be a lot less upset, irritable, or dysregulated when you are able to focus on stuff. And the side effects profiles are the same as well, he adds. The medicines certainly have side effects, and you have to watch for them, he highlights, but it’s certainly better than the anti-psychotic class medication which have much bigger, potential side effects.
In sum, using milder medications, and treating co-occurring conditions is preferred, he says, including sleep problems. Like with sleep problems, you shouldn’t go to medication first if you can help it, he insists.
Why the Algorithm?
The Child Medication Fact Book for Psychiatric Practice and their algorithms are their way of telling the medical community that there is a better way. They want to change minds about how we support autistic people, Dr. Feder says. The audience for the book is indeed prescribers, but it’s also for families because you want to be an informed consumer of these medications.
Dr. Feder says to consider a very busy prescriber in an office who doesn’t have a lot of time and wants to give you something that works. They prescribe you and anti-psychotic and it works, so everybody’s kind of happy at first. But months or a year later it’s taken its toll. Dr. Feder says we want people to be thinking of non-pharmacological things they can do first.
In addition, he continues, 9 out of 10 psychotropic medication prescriptions don’t come from psychiatrists, but come from non-psychiatrists, including pediatricians, physician assistants, nurse practitioners, and others, so how do we get these people the best tools instead of just the pharmaceutical companies pushing medications on them and making a lot of money from them?
Dr. Feder says you have to sometimes be an ‘RPM’, as Dr. Greenspan used to say (a ‘Really Pushy Mom’) and use ‘we’ language, as Dr. Dan Siegel suggests, by saying, “Maybe we can look at this” showing them the new book rather than using accusatory language or putting the onus on them.
Health Care Professionals Still Don’t Know the Options
Dr. Feder is pleased that the American Academy of Pediatrics has encouraged pediatricians to get good at doing the basics for depression, anxiety, and ADHD as well, and he believes that they should include autism, too. I brought up how what is still so lacking is the knowledge about DIR/Floortime and developmental approaches. Doctors still just talk about ABA because that’s what they’ve heard. Dr. Feder says that this is due to the dominance of the traditional ABA approaches.
There has been a lot of talk about the Naturalistic Developmental Behavioural Interventions (NDBI) that are out now, which are the ‘kinder’ and ‘gentler’ models, including the Denver model, but they are very short-term, Dr. Feder explains. It doesn’t last very long, so the next phase tends to be ABA, because the ABA committees are using that as their entry. So, it’s really important for other health care professionals who are working with autistic kids and families to know the differences between the traditional ABA, the NDBIs and the Developmental, Relationship-based approaches because–if for no other reason–the approaches to an upset child are so radically different, Dr. Feder shares.
In Floortime, we lean in to somebody who is upset, speak softly, and empathize with intensity, whereas ABA tends to psychologically abandon the kids by ignoring them to get it to stop, and it works. It stops people from responding. They give up trying to get help, which doesn’t help, Dr. Feder explains. It just gets you to comply to what other people tell you to do, which isn’t very safe. It’s neglect and abandonment, emotionally, Dr. Feder says. He would rather deal with somebody who’s feisty and negotiate with him rather than just does whatever he says.
The Algorithms
You will have to purchase the book to see the algorithm, but Dr. Feder can talk us through it and talk about some of the approaches in there. Dr. Feder began by starting with the co-occurring conditions including sleep difficulties, anxiety, depression, and ADHD.
The Algorithm: Sleep
Starting with sleep, there’s an assessment phase, Dr. Feder explains. Sleep itself could be an entire podcast or course. A lot of our kids don’t sleep very well. We try to figure out what it is, he says. Are they getting too much blue light from screens, are they not getting enough exercise during the day, or are they frightened at night? Sleep hygiene is an important thing to do such as putting screens away a few hours before bed, avoiding caffeine and foods that can get you amped up before bed including Salicylate containing foods (e.g., Feingold diet), etc.
But if you give people a sleep hygiene sheet, most people know these things already. You have to take the time to break down what bedtime is like. Work on the problems bit-by-bit. You have to problem-solve each sleep hygiene idea, Dr. Feder explains. There are even some more milder behavioural type strategies you can use. Dr. Feder says that if someone is having trouble getting to sleep because they’re scared and want you to sleep next to them, you can gently over time get further and further away so they can track you knowing where you are from a distance, for instance.
Some people use melatonin then say it doesn’t work but then you find out they were using 10 to15 mg when you only need 1 to 3 mg, Dr. Feder says, but you have to give it about 1.5 hours before they go to sleep. And, he says that most of these melatonin supplements are short-acting so they don’t work when the child wakes up as part of a normal sleep cycle. He doesn’t want them using sleep drugs, ever. They’re not even good for most adults, Dr. Feder insists.
The side effect he worries most about it is the child waking up while on them and doing whatever their emotions tell them to do without any judgment, he warns. And, he shares, they’re not approved by the FDA for kids. Some people use milder drugs like Benadryl which is very problematic long-term. He says that if you are using sleep medications, start to wean them gradually when you have a good sleep pattern established. Dr. Feder doesn’t like to use the sedating anti-psychotics either.
Other medicines you might hear about for sleep, Dr. Feder continues, include Clonidine, which a lot of pediatricians use. It’s an old high blood pressure medication and is pretty safe, Dr. Feder says. In high doses you can get dizzy, he warns. If you’re on it for a long time for irritability and suddenly stop it, your blood pressure could go up more, but usually this doesn’t happen in kids or teens, he says. Guanfacine is another similar drug that is like Clonidine’s cousin.
The Algorithm: Depression and Anxiety
If we’re talking about depression, Dr. Feder continues, a lot of kids are suffering because the world is a tough place, which wears you down, and you don’t feel good about yourself, the world around you, or your future. Sometimes kids feel like life isn’t worth it anymore, so we need to be screening people for suicidality, he suggests. For autistic kids, though, there isn’t a lot of research on it, Dr. Feder shares. The most commonly used suicide screen in children and adolescents is the Columbia Suicide Severity Rating Scale (C-SSRS) which is pretty long and verbally complex so we would like to simplify the language for our kids.
You might prefer to use the Ask Suicide-Screening Questions (ASQ) and for treating depression, we’re back to non-pharmacological things like DIR: calm, connected, relationship-based flow of interaction, being heard, being seen, and being felt. That’s the mainstay of what we try to do. Physical activity is so helpful: keeping people active and engaged during the day in meaningful activities that work your body, Dr. Feder continues. We tend to crave fat, salt, and sugars when we’re down, so try to eat more protein and less of the simple sugars, he says. Get more complex carbohydrates. Use these things first.
If you’re going to use a potion like St. John’s Wort, they can work, but there’s so much variability between pills that it’s hard to rely on that. Dr. Feder says that not only might each pill not have the same dose in it, but not even the same stuff in it because there’s no oversight so it’s hard to trust the ingredients. Sometimes people have trusted sources of herbal supplements, Dr. Feder says, but there’s no real oversight on that and when you see studies of people opening up and measuring the amount of St. John’s Wort inside each pill, it really varies. It’s problematic.
Melatonin is also not monitored, but it’s not as big a deal, but with a supplement that’s mimicking an SSRI, it’s a more serious problem. Another supplement, SAM-e, has similar issues, Dr. Feder shares. When you get to anti-depressants, Dr. Feder continues, the bottom line is that there are a couple SSRIs that have the studies that show that they sometimes help, but not reliably, and not the same as the anti-anxiety medications. Neither have a lot of research but anxiety is more responsive to these medications, he states.
Fluoxetine and Prozac have been out since 1989 and are pretty robust for anxiety problems–maybe not as strong for depression, but they have the most evidence of any anti-depressant. Zoloft (sertraline) is another one. Dr. Feder gave a couple more examples. He says that every other anti-depressant doesn’t have good research and all anti-depressants have about a 1% chance of new suicidal thinking so you need to monitor for this, he warns. Most of the time, though, he continues, kids feel better on anti-depressants and the suicidal thoughts go away.
The only other medication that helps make suicidal thoughts go away in people with mood problems is Lithium, Dr. Feder says, but that’s a lot more complicated, which is not a topic for this podcast. For both anxiety and depression, Dr. Feder says, therapy works. He said what type depends on the family and child and how much you’re able to use speech and have complex thinking. DIR does not require abstract, complex speaking, he explains, so there’s a lot more breadth and mileage you can get out of DIR, he states.
The Algorithm: Non-pharmacological approaches
What also is so helpful for our kids, Dr. Feder explains, is good sensory integration, occupational therapy. Sensory experience impacts our entire life, no matter who we are, Dr. Feder continues. Paying attention to that can help you feel better, whether you’re depressed, anxious, have ADHD, or are a neurodivergent autistic person. Improving the breadth of your level of comfort through a DIR approach where you do meaningful things that might not be as comfortable, but you’re improving the things that you can tolerate, whether it’s food and feeding, or the sticky stuff on my desk, or being out in different kinds of weather. It may be hard, but because you’re doing something that’s really fun you’re able to tolerate it a little more and get used to it enough so it’s not such a bad thing.
And then, how can you not talk about social communication when you talk about autistic diversity? Dr. Feder says to find people who understand you and can coach you as a parent to be able to hear and understand your child better and hear, understand, and catalogue their intent, whether it’s what they’re showing on their face–or not showing–and what their behaviour is communicating, so you can communicate with them in a shared way.
The Algorithm: Pharmacological approaches
Only after that do we get to the heavier medications, Dr. Feder says. Low dose Naltrexone is one to discuss. It’s been used in the opioid epidemic. The theory, that hasn’t yet been tested, is that there may be some differences in the opioid systems of autistic individuals that has something to do with them being a little bit less responsive in some ways to the world around them. Naloxone and Naltrexone can reverse that. That, Dr. Feder doesn’t know. But what he does know is that on low dose Naltrexone (3 to 5 mg or even less, contrasted with 50 mg used for treating alcohol-related problems), some people feel a lot better, and it’s pretty safe. In the higher doses, they do liver function testing, he explains.
Propranolol is an old high blood pressure medication, different from the last one Dr. Feder discussed above, which keeps your heart from racing. So instead of being anxious before giving a speech, you can take this. A lot of autistic kids do better on this, too, he says. Some of our kids won’t show on their face that they are upset and maybe their heart is racing. When they finally get overwhelmed, they get demonstrative in their upset. It’s pretty safe stuff, but if you have asthma it might make it worse, so you have to watch for that. If you are an athlete, it could prevent your heart rate from getting up to where you need to be to perform, so it’s not ideal.
If none of these are working, there are also anti-convulsant/anti-epileptic drugs, Dr. Feder offers. If you have a seizure disorder, you need to be treating that first. A 24-hour EEG can help find out if there is seizure activity that needs to be treated. And seizures peak around middle childhood and adolescents. Dr. Feder names a bunch of them that are all very different medications. First, he talks about Gabapentin, sold under the brand name Neurontin. The hard part is knowing how much you need and it can also combat some anxiety as well and rarely do people get addicted, but it’s possible.
Another anti-convulsant is Oxcarbazepine, sold under the brand name Trileptal is also pretty safe, but you have to watch blood chemistries especially if the child is sick. The main thing is finding the right dose, Dr. Feder explains, and also people sometimes get clumsy on it. Valproate (Depakote) is a really good anti-convulsant. If you have someone who is really aggressive and has ADHD, the first thing is to use stimulant medications because 60 to 80 percent of the time, you try stimulant medications like Ritalin or another type like Adderall.
If these don’t work, then you go to Depakote or the anti-psychotic, Risperdal, which we’ll talk about below. Depakote works pretty well for aggression, though, Dr. Feder says, but you have to watch blood levels and liver function. This would be the next level for a very dysregulated autistic individual before going to the anti-psychotic medications. Next, Dopamax, or Topamax, is one of the few medications in psychopharmacology where you tend to lose weight instead of gain weight and it might even prevent weight gain with the anti-psychotics, so sometimes they are given with them. It tends to help irritability in most kids. It’s hard on your cognition if you go up too quickly on it. Like Naltrexone, it reduces cravings for alcohol and stuff like that.
The Algorithm: The Anti-Psychotics
When all else fails and there’s irritability, dysregulation, and dangerous aggression, that’s when you start thinking about anti-psychotics, Dr. Feder says. Here you think about Body Mass Index (BMI). BMI was created by actuaries and has nothing to do with your health. It’s been misused in medicine. It’s wrong, Dr. Feder asserts. However, with the use of anti-psychotic medication, it can help guide you to which ones you use.
Dr. Feder does warn that everything he’s talked about so far is off label and not FDA approved for marketing, except for Risperdal or Aripiprazole. If you have a very low BMI below 25, Risperdal or Aripiprazole may well be the best go-to because they have the best research, but you want to think about using it with Metformin, an anti-diabetes medication, to reduce the chances of weight gain, Dr. Feder explains.
If you’re between a 25 and 30 BMI, you might try using Lurasidone or Ziprasidone. Dr. Feder says that they’re not as reliable as Risperdal or Aripiprazole, but they don’t put weight on you. You have to look at EKGs, but it’s worth looking at. If you’re above a 30 BMI, you again can look at Lurasidone or Ziprasidone. If you are thinking of Risperdal or Aripiprazole, you want to think about the new medications that help make your appetite go away, which Dr. Feder lists, but getting them paid for might be a problem. But you do want to forestall some of that weight gain, he stresses.
Nothing Worked!
Still irritable? Dr. Feder suggests that this is when you might consider whether this is Catatonia and discontinue your anti-psychotics. This is a whole other talk and you might try a different anti-psychotic as well, he says, or other combinations.
Summary
Whatever you do, Dr. Feder says, use the non-pharmacological approaches first whenever possible to reduce the use of medication. And if you’re using anti-depressants, remember to talk about the rare, but very serious risk of suicidality, and behavioural activation. Sometimes people get very bouncy. With the anti-psychotics, you have to watch weight and check labs for lipids and sugar metabolism at baseline, 12-weeks in, and every year or sooner depending on what’s going on, and check for new and abnormal involuntary movements about every six months, or sooner if you need to, and consider getting an EKG at baseline and maybe annually as well.
For any of these medications, if you’re stable for 3 to 6 months, think about gradually discontinuing the medication, Dr. Feder strongly suggests. Yes, some of the kids get bigger and they seem to grow out of the medicine and we raise the dose, but a lot of times they don’t, and if they’re doing really well with their developmental approaches and other non-pharmacological things you’re doing, you can relieve people of the burden of being on these medications, he explains. The medications may be helping for a time, but they don’t necessarily help forever.
UPCOMING COURSEDr. Feder will be doing a course for ICDL for parents on medication in May or June which he’s looking forward to, since it will be interactive. Keep your eyes open for the announcement by joining ICDL’s mailing list here!
Explore all non-pharmacological options first!
I wanted to stress that Dr. Feder recommends trying all non-pharmacological options first. If your child is being aggressive because of something that’s happening in their life that’s making them be aggressive, that’s not a reason to put them on medication. Dr. Feder gave an example of an aggressive patient in the past who was on a lot of medication, but he realized that in school the IEP has him sorting silverware in school. He doesn’t want to do that. He liked to pick up trash off the floor and they were trying to stop that. They changed his job and took him off of a lot of medicines, and he was doing a lot better. See what people like to do, partner with them in that, and help them do what they like.
This week’s PRACTICE TIP:Let’s focus on non-pharmacological approaches to the struggles we have with our children.
For example: When your child is aggressive, look for the ‘why‘ behind the behaviour. What has been happening in their environment that might be upsetting to them? Do Floortime everyday to playfully create connection and interaction with your child. Set up the structures and routines that make your child’s environment predictable so they can thrive in their developmental capacities.
Thank you to Dr. Feder for updating us on the latest algorithm for medications in autism and for stressing that the non-pharmacological approach is always the one to try first! I hope that you learned something valuable and will share the new factbook and this post on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Autism and Medication: Part 2 appeared first on Affect Autism: We chose play, joy every day.
Emotional Playgrounds Foster Emotional Well-Beingby Affect Autism
https://affectautism.com/wp-content/uploads/2023/02/2023-03-04.mp3This Week’s Topic
This week I am over the moon excited to have Developmental Psychologist Gordon Neufeld as my guest to discuss emotional well-being (versus ‘mental health’) and rethinking ‘play’ in terms of emotional playgrounds–the heart of a culture of well-being.
I attended the virtual Neufeld conference last May and wanted to discuss these two topics that stood out to me in that they are so relevant to what we aim to do in the Developmental, Individual differences, Relationship-based (DIR) model and Floortime.
This Week’s GuestDr. Gordon Neufeld is a developmental psychologist from Vancouver, British Columbia. He is the author of the book Hold on to Your Kids: Why Parents Need to Matter More Than Peers (co-authored with Canadian physician, Dr. Gabor Maté). Dr. Neufeld’s theory of attachment includes six stages in the development of the capacity for relationship. He is the founder of the Neufeld Institute based in Vancouver, which provides education and training for parents and professionals based on his theories, where I’ve taken countless courses.
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Dr. Neufeld’s work
I started taking courses from the Neufeld Institute after my son was born, over 13 years ago. Everything resonated with me in terms of parenting, and after his autism diagnosis, I caught a spot on The National about DIR/Floortime, a new, developmental approach to autism. I knew about the developmental approach from Dr. Neufeld’s work and this made sense to me. Fast forward to today, I’m still taking his courses, and mention his insights in my blog posts all the time. When you see things through a model of attachment, everything falls into place.
Dr. Neufeld agrees. He calls his theory an insight-based approach, which many are not used to because they’re used to strategy-based approaches. It’s all about making sense of a child from the inside out, and from that place, finding ‘the dance’. That’s what we do in Floortime, too. Before we got into the topic of ’emotional well-being’ versus ‘mental health’, Dr. Neufeld wanted to provide some history and context.
Neufeld Institute ResourcesSee the Neufeld Institute PLAY AND EMOTION course
See the Neufeld Institute PLAY AND ATTACHMENT course
Free Resources from the Neufeld Institute
The History of ‘Mental Health’
The construct of ‘mental illness’ was a revolutionary construct to humanize the treatment of the insane (i.e., the mentally ill)–those who were unable to function and couldn’t find their bearings. The idea of ‘illness’–that they couldn’t help it–was a metaphor that was used by those who were tying to humanize the treatment, Dr. Neufeld explained. He noted that this was reserved to individuals who have lost their bearings, and who have suffered some loss of identity so they cannot locate themselves in time or space, or at least not consistently.
One of the unexpected effects of this, he continues, is it put these people in the hands of doctors who knew nothing more about it than anybody else did–and they still don’t (psychiatrists are not trained; it’s just a residency with somebody else)–rather than about a concern about humanity and the nature of suffering. Two things happened as a result once the doctors began to treat the syndromes–of which there are now almost 400 in the Diagnostic and Statistical Manual (DSM):
- First, everything in that syndrome is called a mental illness where this was only reserved for those who lost their bearings, the insane, and so on, Dr. Neufeld explains. It means that everybody now is in the hands of doctors, who hand it over to the pharmacists to treat the symptoms of it. We can’t go around talking about mental illness, so they flipped it around to ‘mental health’ which was a way of euphemizing it.
This gives rise to the idea that it has to do with a problem of the cerebral cortex, rather than with the limbic system and gives rise to the idea that it is an illness, Dr. Neufeld warns, but it’s not a virus or an illness. It’s just that we should have compassion rather than judgment. The whole infrastructure is wrong, he emphasizes.
Now, according to statistics, 60% of us are mentally ‘ill’, so there’s no more differentiation between different so-called ‘illnesses’, Dr. Neufeld states, and now we try to reduce the stigma around it. Now we hand over our children, who label as mentally ill, so they can get access to the experts to get treatment, who don’t know much about it, and pharmacology is the way they handle it to reduce suffering.
- Second, at the same time, Dr. Neufeld continues, emotion was thrown under the bus by John Locke who said that women and children are too emotional, and the only reason children should be spanked is if they’re too emotional. Emotion and all inner springs of movement were thrown under the bus, but all neuroscience and developmental psychology are all about the inner springs of movement. Only in the last decades have we realized that emotion is not a left over part of our animal nature. It has a purpose, Dr. Neufeld emphasizes.
Emotion comes along with attachment, a pre-eminent need. The way we’re designed is with a drive for togetherness, which is how nature takes care of us, Dr. Neufeld posits. With togetherness, we take care of each other. Emotion has a purpose, even though we don’t know that purpose, he suggests. It’s deeper in the brain. It exists in other animals that don’t even have a cerebral cortex.
The Problem with Behavioural Theory
Dr. Neufeld says that the problem is that the blank slate theory evolved into behavioural theory that evolved into cognitive theory which now goes again to the idea that it’s in the head. So if you think right, you’ll feel right. In actual fact, he continues, it goes the other way around. Neuroscience shows there’s bigger pathways going from the limbic system and from an evolutionary view, the cerebral cortex came later on so we could interpret and make meaning of experience, Dr. Neufeld explains. If we have a different interpretation of our experience, we’ll be affected differently to a certain extent, yes, but these aren’t the things that get us into deep trouble, he points out.
What gets us into deep trouble, Dr. Neufeld asserts, is when we have emotions that aren’t able to work properly. One of the keys to emotions (i.e., primary emotions of frustration, alarm, and pursuit) is that they are commissioned to fix a separation problem. They’re pre-wired. The brain doesn’t know when to stop. It can’t stop feedback from an emotion with the thinking part–the cerebral cortex, Dr. Neufeld explains. It has to feel its way through. It’s feedback from an emotion.
Dr. Neufeld says that we have to feel an emotion and feel the futility of the fix. Sadness is the most important way a brain realizes that we can’t get through that way (i.e., that that fix isn’t possible), so emotions stop. Most of the trouble we have is due to stuck emotions that have not come to an end, Dr. Neufeld believes. What is missing is sadness, but that’s been pathologized by mental illness as being indicative of depression, he says.
The whole contruct of a disorder is basically arrogant physicians saying that the brain is a mess and there are almost 400 things that can go on with the brain, whereas the developmentalists say that the brain has its reasons. There is a purpose. There is order. We don’t talk about disorder, we talk about what the brain is trying to do. What message is there? How can we help it? We wonder rather than saying something is wrong, Dr. Neufeld explains. These days there are a select few psychiatrists deciding what the disorders are, and there’s no wisdom behind it, Dr. Neufeld complains. And now anxiety is considered a mental illness, he says.
Dr. Neufeld was giving an address to about 2000 mental health workers and asked how many of them are mentally ill. Two put their hand up. He stated that they didn’t even believe it, so wondered why they are practicing this. It’s in our language now, he resigns. When he is invited to large international conferences on mental health, he can’t say he doesn’t believe in it. He has to go and work within it. He’s been languaged out. Common sense has been languaged out, he says. Children have now been given into the hands of people who don’t know what to do with them, he laments.
The ‘Why’ Behind Behaviour
Those who have taken any of Dr. Neufeld’s courses will recognize that there’s so many layers and context to almost every phrase Dr. Neufeld is using in this podcast, but a couple of things jumped out at me: Looking for the ‘why’ behind the behaviour is the first. Dr. Neufeld jumps in and points out that first of all, to ask ‘why’, you have to believe there is a ‘why’. ‘Mental illness’ is still the idea that it’s cognition and there’s no inner springs to behaviour. The inner springs are that which moves us, he explains. Emotion literally means ‘to move’. So when you ask ‘why’, he explains, it is assuming that the inner movements are where it comes from.
For example, if a child erupts in attacking energy in some way (e.g., hitting their head), when you come with the idea there are inner springs to movement, you look for the primary movements, Dr. Neufeld explains. What are the primary movements? When frustration turns foul, it turns into impulses to attack. We’ve known this since the Frustration-Aggression Hypothesis in 1939, he states. Now, Dr. Neufeld continues, if you add consequences to that by sending a child away from you, you are playing with the most provocative thing of all: facing separation.
Does this increase or decrease the frustration? It’s like saying, “Would you like to have some more frustration with your frustration?” All you have to do is to go where all of neuroscience has already gone to: there’s inner springs to behaviour, Dr. Neufeld explains. If there’s no inner springs, you would reinforce behaviour by rewarding it, and discourage behaviour by some adversive consequence. But if there are inner springs to behaviour, then everything depends on the insight you have as to where that comes from, Dr. Neufeld explains.
Is the child alarmed? Are they in high pursuit? Are they frustrated? Is the child shy–to be reserved only for their people? Is it an instinct to pursue proximity? Has that flipped (i.e., defensive detachment)? Are they now resisting all proximity (which is very characteristic in autistic children)? Is it an alpha instinct to always have to control things? When something isn’t working, you would have high frustration, high alarm, and high alpha instincts, and a preponderance of the instinct to detach–to resist contact and closeness where you’re pursuing it, which is pretty synonymous with classic autism, Dr. Neufeld theorizes.
Autism/’Hypersensitivity’
Dr. Neufeld believes that the main problem in hypersensitivity is that there’s more input into the brain than can be interpreted and given meaning. Dr. Neufeld says that the estimate is that only 3 to 5% of information is let in to our brains because they have never evolved to be able to deal with more than that. The sensory gating system controls the input and is letting in more than that in hypersensitivity, he continues. The more that’s let in, the less meaning can be made of it. The solution is to slow things down, Dr. Neufeld suggests.
Dr. Neufeld suggests that the more you can bring it into the realm of play, the better because play draws in information according to interest. The whole filter system of the brain is different in autism, he continues, and they can have a better chance of being able to do those things that don’t count for real. The brain rests from the major dynamics of attachment, which are always the most urgent, and you get play in the system where the brain has more plasticity and can find workarounds, Dr. Neufeld explains.
Dr. Neufeld says that the reason why little things would be highly overwhelming is because they are! Way too much is getting into the brain for the brain to have to make meaning of it. Everyone does best when things are slowed down, when the stimulation is lowered, and when there’s space in the music, for instance. We all do better this way because there’s less of a load on the brain, he says. When input increases, our brain comes with blinders and filters, and it’s these things that are not working the same way in a hypersensitive brain, causing information overload, Dr. Neufeld says.
Play and Rest
Play and rest are two major concepts that Dr. Neufeld talks about in his courses. The child needs to have rest from pursuing attachment, he says, and if they’re feeling that their primary caregivers are not giving that invitation to be in their presence, and if they don’t feel safe and don’t feel loved, they’re in pursuit of that attachment, and you need to have the rest from that attachment to grow, he claims. Everything does, Dr. Neufeld says. The child grows during sleep physically, the brain repairs, and puts memory into place, etc. Everything happens in the rest mode, he affirms. Everything else in the brain is trying to work for the moment. Any growth whatsoever happens in the rest mode.
The most important work is the work of attachment–pursuit and proximity–to be able to have a home base. Play is a state of activated rest where the other agendas are temporarily suspended because it doesn’t count for real. The brain is in a state of repair, recovery, memory, and growth, etc. even though you’re awake when you play. To enter play you need a secure connection/home base and plenty of opportunity for ‘true play’. Screen time, sports, or playing a music instrument are not examples of ‘true play’ because they are outcome-based. ‘True play’ is play for play’s sake when it doesn’t count for real. It’s for anyone. When anything goes wrong, you retreat to the basics.
Dr. Gordon Neufeld, Developmental PsychologistThe more things are not functioning optimally, Dr. Neufeld continues, the more important it is for the brain to find the rest mode. Someone needs to step up to meet those basic attachment needs of ‘holding’ on to the child (not literally, but holding that invitation to exist in your presence), finding an anchor point, and the play, he says. No strategies. Everything should be reduced to these simple, obvious ideas, he claims.
Dr. Neufeld had an opportunity to address Ukrainian teachers and mothers recently, and in both cases, there was nothing else to talk about except emotional first aid: play and connection. If you’re going to talk about trauma: play and connection. If you’re going to talk about optimal ways kids should learn at school: play and connection. It’s really quite simple, he concludes.
Parents are the Answer
The problem is that we’ve gotten lost in the details, Dr. Neufeld continues. Play as a construct does not exist in the medical world or in the construct of ‘mental health’. And attachment is rarely used as a construct, he says. It’s rarely said that the parent is the answer to the child. They get it all wrong. The parent is always the answer. The expert can work through the parent, but the parent is the answer, he insists. In Floortime, we’ve got that idea right. The parents are not always the source of the problem, but they’re always the answer, he assures us.
And so many of today’s ‘treatments’ go against this, I pointed out. Dr. Neufeld said it wasn’t long ago that in Vancouver the only children who could attend full-time Kindergarten were those who had diagnoses and disabilities because it would be assumed that they needed to get to school to have access to the experts and the programs. Everything is the opposite, he asserts. The construct of ‘mental health’ seems innocent enough, but it’s one of the worst turns we have made in contemporary society because it’s taking children away from the very adults who are meant to be their answer.
Follow the Child’s Cues into Play
In DIR/Floortime we say to play and connect with the child and a lot of parents don’t know how to play. They think it’s about playing with toys or teaching, but the child might just want to climb on a chair, go under the chair, or behind the chair, as Dr. Glovinsky described in this podcast. Dr. Neufeld says that when you can’t make sense of something, you’re always best taking your cues from the child as to where to go. It’s sad if adults don’t play because playfulness is the number one indicator of emotional health and well-being, he says.
We know this intuitively, Dr. Neufeld shares. Part of the problem is that we don’t properly invite children into play. You have to give a play signal that something has altered: whether you put on a cape, put on a silly voice, wink your eye, or some other kind of signal. Play is always a defined time. You have an entry and a way out, but you have play signals as dogs and cats do, for instance. Children cannot resist a little bit of silliness on the part of an adult that is being able to be seen as silly, or a change of clothing that signals we’re now in pretend.
The instinct to play is so important, Dr. Neufeld continues. It’s right next to the instinct to breathe, it’s so important, he insists. If the conditions are conducive, if you hold the space, if there’s some certainty and security, and if the ritual is there–generally speaking, if you take care of these things and suspend trying to change the child and do the work–and if you’re holding the space, your child will give you a cue.
Where’s the energy going and how can I make it playful?
Dr. Gordon Neufeld, Developmental PsychologistA lot of autistic kids like to spin things, Dr. Neufeld says. He would get out his fan and the things that twirl, listening to the noises and he never had a child who watched him play didn’t want to also play. He’d put himself between the child and the fan to get the child to have to come through. There’s always a way, he insists. You start in play. It’s engaging, but you walk the maze. That’s when the brain becomes plastic. You can never strategize it because it’s not the way it works, Dr. Neufeld says. As Dave Nelson said last podcast, “You have to anticipate and guess, but you just don’t know what things are going to be like.“
Getting Stuck
I described a situation to Dr. Neufeld when our kids can be inappropriate, but are still being playful. Some might go to discipline. I gave the example of my son yelling, playfully, “Mama, you suck!” or, “Mama, you’re stupid!“, experimenting with phrases he’s heard somewhere else. I can tell he’s being playful and probably doesn’t understand what he’s saying. Most parents might yell back, “Don’t say that!” which might be important to say, but I asked Dr. Neufeld what his thoughts were.
Dr. Neufeld said that if it’s perseverating or is stuck, there might be attacking energy and the safest place to attack is me, Mom, his safe person, which is something Dr. Neufeld would see as positive. Dr. Neufeld would calmly giggle and say in a jolly voice, “Oh boy, you’re feeling like you want to call me names right now!“, putting on my ‘play hat’ and then have fun insulting each other. Play with anything that there’s not room for in real life because it would hurt feelings or would break the rules. You have to make room for it in play, he explains. If it really is a more upsetting sentiment towards me, Dr. Neufeld suggests I can say something like, “I think maybe you’re upset with me now. That needs to come out…let’s think of a way.“
It’s always facilitative, Dr. Neufeld continues. There’s so much frustration wherein the brain isn’t able to do it’s job of keeping the information out, so you have flooded frustration. Therefore, if there’s any safety whatsoever, there’s going to be attacking energy, he explains. The issue, then, is making plenty of room for that attacking energy to come out in play. That’s where emotions need to find room to play because (a) it saves relationships when it comes out in play and (b) it’s only in play that you can feel an emotion to its degree of intensity. We think they our kids are feeling their emotions, but often they don’t–nor do we.
‘Emotional’ playgrounds
The whole purpose of the ’emotional playground’ to get something expressed, otherwise you’re pushing it back in and it will come out in some other way, Dr. Neufeld insists. When you bring it into the play mode, you get your child to feel the impulse. You can’t manage or fix anything that you can’t feel, Dr. Neufeld explains. It’s EMOTIONAL play. You need to know that what’s moving your child is emotion and instinct (not a purposeful ‘will’). Emotions need to be felt to be able to foster maturation and growth, he states. Play becomes our way through. Everyone’s thinking about physical playgrounds, which are important, but we’re talking about emotional playgrounds, Dr. Neufeld says.
Emotion takes care of us, and play takes care of emotions.
Dr. Gordon Neufeld, Developmental PsychologistThe brain is busy creating white noise to be able to decipher signal from ground, Dr. Neufeld explains. Automatically if you suspect hypersensitivity, put white noise in your life to help your brain decipher signal from noise, but in a playful place because play allows for the plasticity of the brain to figure out why, he says. It’s the emotional play that’s important. It’s the alarm that needs to be taken to play. Alarming games like peek-a-boo or monster in the context of safety are perfect. The emotional playgrounds are where the brain will find its workaround, Dr. Neufeld says.
Whether it’s music, dance, theatre, drawing, sculpture, or other areas of the arts in culture, these are the traditional playgrounds of emotion, he offers. Play is for everyone, not just children. Woodworking is an emotional playground that Dr. Neufeld, himself, enjoys. It’s the emotional playground that helps you manage your emotional well-being. Music is perfect, Dr. Neufeld says, because there’s a beginning and an end. The most important music is music that can grab some sadness. Sadness is where the brain is plastic because there’s a sense of letting go when the brain is sad, he explains.
The lullaby is structured in a minor third and is slow and intimate. It’s set so you want to rock. It’s like you’ve discovered the key to sadness, he explains. If you think about a two-year-old wanting to hold on to the day, an intuitive mother would sing a lullaby to evoke a sense of sadness to let go instead of thinking of all the agendas. Through an emotional playground, Dr. Neufeld continues, you’re accessing a bit of sadness, making it safe to feel for just a little bit of time so the brain can do its job. One of the most important instruments of dealing with hypersensitivity whatsoever would be the lullaby, he suggests.
Walk the Maze
I asked Dr. Neufeld what to do if your child yells back to stop singing. He said that if the brain is feeling too sad, or it’s too overwhelming, you have to tone it down. The whole thing is indirect, he explains. If the child is going to feel manipulated by the song, you have to walk the maze and find your way to it. You’re on the right track, but ease it up. Maybe a bit of sadness in a story will get you there instead of by singing. The brain has to feel a bit of sadness for the plasticity to get out of the neurological ruts that are forming–the perseveration–to deal with an overwhelmed brain.
You begin to look for the emotional playgrounds that will deliver what you need to deliver, but you’re going to try to help the brain, help the emotions, and help the feelings do what they do, Dr. Neufeld explains. The answers have always been there. The best way to find a way to be the answer to a child who is highly challenging is simply to feel sad about what is not working along the way, because your brain lets go of it, and avoids perseverating, then comes up with another idea. If we continue to say, “Stop hitting!” then Dr. Neufeld asks, who has the problem?
The ‘Experts’ are NOT Experts
When you turn to experts, Dr. Neufeld asks, would they ever prescribe a lullaby? When you realize that there’s something RIGHT with us, and how the human brain works, and that we’ve been here for tens of thousands of years, and that the hypersensitive have also been here for tens of thousands of years, you realize that our challenge is to put our child into the hands of nature. Play is nature incognito, Dr. Neufeld says, to create a womb of attachment. If there’s movement within it, we continue to hold on, he explains. These have always been our challenges.
When we look outside ourselves, Dr. Neufeld insists, we lose our way, because the ‘experts’ don’t know. We’re better feeling our own way through, and feeling our own way through is to feel sad about the things that are not working, he explains. It’s hard to unstick your child when you’re stuck yourself. When we think emotionally, Dr. Neufeld says, you get out of your head and into your heart. Instead of something being wrong, there’s something right, he says. We know we must feel. We know there must be a melancholy thread in there somewhere.
Neuroscience has all the evidence we need to back this up and restates the obvious, Dr. Neufeld discloses. If we come to a situation saying, “I need to be the answer to this child. I don’t know what the hell I’m doing, but I need to step up to the plate. I need to feel along the way what needs to happen because I need to compensate for a brain that is being overwhelmed. How do I begin to do it?“, Dr. Neufeld really believes that we would find our way through far more than leaning on the so-called ‘mental health experts’.
This week’s PRACTICE TIP:This week let’s try to touch the sadness around things we cannot change to help our brains move forward with adaptation.
For example: In a moment of dysregulation for you or your child, don’t try to solve anything. Realize something is not going right and frustration needs to come out. Use a sad tone, with the child or to yourself, like Dr. Neufeld suggested, and playfully tell yourself or the child that their frustration needs to come out, and figure out how you can get it out–gently and maybe indirectly, if need be.
I can’t thank Dr. Neufeld enough for taking the time to discuss these topics with us today. How enlightening! I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Emotional Playgrounds Foster Emotional Well-Being appeared first on Affect Autism: We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryCuriosity as a Driver of Connection and Interaction in Adolescenceby Affect Autism
https://affectautism.com/wp-content/uploads/2023/02/2023-02-18.mp3This Week’s Topic
In our last podcast together, back in 2019, Dave Nelson and I discussed puberty and how we can best support our kids in a respectful way using a developmental approach. Today we want to continue on that topic by touching on the developmental way to support our adolescents in taboo areas.
This Week’s GuestDave Nelson is a Licensed Professional Counselor (LPC), a DIR Expert Training Leader, and the Executive Administrative Director of the Threshold Community Program in Atlanta, Georgia.
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!There are no definitive answers
In our last podcast, Dave said that the Developmental, Individual differences, Relationship-based (DIR) model and Floortime give us a way to think about and approach issues because we’re not going to have the answer to every problem that comes up, nor will we necessarily be able to plan in advance and that this helps us start to think about issues in an anticipatory way rather than being reactive.
Dave says that this is a challenge of being a parent of any kind. You have to anticipate and guess, but you just don’t know what things are going to be like. Supporting the emerging sexuality and sexual identity of a child is challenging, regardless of a child’s profile. It’s about supporting the individual, Dave says, into a functional, happy, safe adulthood. There really are no definitive answers for this stuff, he reiterates.
Perceptions of Others
Since Covid, my son has grown to almost my height and is now 13 and a half, but developmentally he is not where a typical 13-year-old would be and academically he is at about a Kindergarten or grade 1 level, in the early stages of reading and writing. When people see him, they might expect him to be like a neurotypical 13-year-old, but notice he talks loudly and a lot, and might talk nonstop whether someone is listening or not.
This might cue them that he might be neurodivergent. I asked Dave about this and about the cap that gets put on our kids resulting in them being put in a ‘life skills’ program/path versus moving them along the developmentally, including academically. He might be considered to have an intellectual disability–it could be delayed, and he might have an intellectual disability still in 10 years–we don’t know–but in DIR, we always want to assume that the potential is there.
Dave gave an example about a very tall girl on a teen volleyball team who was only 8 years old. Everybody who saw her would assume she had a certain level of maturity and capability so when she got upset and cried people looked at her judgmentally, not knowing that she was only 8 years old. It’s hard for us as humans to resist the temptation to make conclusions about somebody based on how they look, Dave offers.
DIR encourages us to look at people based on their Individual profile. DIR practitioners are going to be more comfortable supporting an adult who still likes kids’ shows. Meeting someone where they are means meeting someone where they are cognitively and emotionally. ‘Presume competence‘ has become a buzz phrase in different years. The underlying idea is valid in that we don’t want to put a cap on what somebody is capable of. While this is essential, it also creates a bit of a challenge. How do you meet them where they are based on what they’re presenting to us and how do you not overshoot, Dave asks.
Meeting someone where they are at
One of DIR‘s early lessons for Dave with his own son was not to overshoot just because a person can talk and talk at great length about dinosaurs or trees, for instance. They might not have the same emotional and cognitive development of someone else their age, Dave explains. Yes, leave the door open to the top for independence or going to college, but also meet them where they are without filling them with our own hopeful expectations. It’s an important part to meet someone where they are. If they are showing us a certain set of ideas or interests, we have to accept that.
It’s about understanding that continuing to do the Floortime, meeting them where they’re at, and gently challenging and expanding over time as they move up developmentally. That trajectory is unknown, but in the moment you have to meet them where they’re at and use the ‘just-right challenge’.
Safety comes first
Dave says to bring it back to supporting budding sexuality, we have to be concerned with safety first and foremost. The term ‘presume competence‘ is frequently used with the community of those who use an AAC Device because they don’t use spoken language. Dave’s concern is that we still need to lean heavily towards safety and protection for those who aren’t able to easily advocate for themselves.
We need to support them to make sure that they know what it is that they think and feel and to help them have ways of navigating the world safely. Not everybody is in a position to know that and be able to reflect on that. We all want everyone to have as much autonomy as they can, but we all know stories where people have gotten themselves into difficult situations because they haven’t acted on that autonomy in a safe way. When you’re talking about supporting someone into puberty and adulthood, we can’t forget those basic protections.
What do you do when kids say inappropriate things?
A parent recently brought this concern to me: “As my son’s social development has blossomed, he picks up on phrases and words that make other people laugh or blush. And then HOLY MOLY… there’s no stopping him based on context! Part of that is that he doesn’t know what he’s talking about because we haven’t had ‘The Talk’. Part of that is his desire to fit in and belong and not having a social filter. So educating him on the information BUT trying to support him on when and where this is discussed is really beyond me.“
Dave gave an example of a 15-year-old in his community school who started taking pictures of women’s butts at school. Dave said that it was safe in the sense that the teachers understand our kids, but of course they still don’t want their photos being taken–especially when they’re inappropriate. I said how this, in an innocent way, is just his curiosity, but as an adolescent it’s completely inappropriate, so what do we do?
Dave says that this is the tight rope we have to walk because we absolutely want to be validating their curiosity about sex and sexuality and their desire to be socially connected, so we don’t want to shut down attempts to make social connections. At the same time, however, we have to figure out how to articulate and set limits on behaviour and communication–and this is difficult for DIR practitioners.
We can’t endorse or endure every kind of behaviour. It gets really hard to navigate both of those ideas, Dave says. Dr. Greenspan was masterful at this idea of not being offended or put off or stopping it, but use it as a driver of connection and interaction, Dave continues. So much of the focus in Dave’s training was on early intervention with young children, so it’s tricky as kids age. We still, though, have to validate the curiosity and attempts to communicate and to express those limits on that communication.
How to set the boundary
We have to come up with ways, using affect and our words, to say that you’ve entered a difficult area here and it’s not working, all while validating their curiosity and attempts to connect. For parents who find setting that limit difficult, Dave suggests replace whatever that thing they’re doing is with some explicit kind of hate speech. You’d be much more comfortable stopping that. If they ran out onto a busy highway, you’d have no problem physically stopping them.
How you limit set will differ based on the person you’re supporting in terms of how complicated the language they can understand is, or how much behavioural control they have. You want to start using affective or other signals that convey that they’ve entered a ‘red zone’ or that they’ve entered ‘a private conversation only’ and then come up with ways to support that conversation, Dave advises.
Reflecting on his own experience learning how to follow somebody’s lead, Dave says you need to be non-judgmental nor overly reactive to unusual or provocative things. This is a bit of an adjustment because you’re saying, “Hold on! You’ve crossed a line.” If we’re trying to help people be a safe, productive, happy member of a society then we have to help them learn some of these things. How we do it depends on their ‘D’ and their ‘I’, Dave explains.
Part of what you want to do, Dave explains, is to start to define some of these difficult areas with your child. You have to come up with that language yourself. Whether it’s “this is private talk” or “sex talk“, we have to have some limits over where and when we can do these things. Over time, it will be easier to help somebody be aware of what’s happening and stop them, but when you’re talking about someone who finds it difficult co-regulating with others and gets upregulated as they have these ideas, and says these things to get a reaction, it sometimes means you are going to have to separate people and co-regulate them in those Floortime ways.
By the time a child hits adolescence, parents want to be out of the playroom and want to have dinners with family members on holidays. Calm them down, re-engage them and work them back up developmentally. Separating, calming and re-regulating gets difficult as our kids get older, but we don’t want to punish or chastise them for being in these taboo areas. We want to re-engage in ways that work for them so you can then talk to them more reflectively about those ideas.
Play is the best, most effective place for us to help people experiment with difficult or complicated feelings, whether it’s aggression or sexuality or something else provocative topics.
Dave Nelson, Licensed Professional CounselorBring it into play
Dr. Gordon Neufeld talks a lot about how important play is to channel frustration. He suggests putting on a ‘play’ hat, so to speak, whether it’s a different playful voice or change in affect, so you can work it out through play which is a defined, pretend space with no consequences that allows you to work through the emotions. Dave loves that. Putting it in a context of play does put a bubble around it, but also, within that bubble, gives you more freedom to act, react, and respond in a supportive, collaborating way, Dave explains.
If someone is obsessed with butts, you can explore that in the play bubble: “What do you find so interesting about butts? If you could take pictures of anybody, who would you take pictures of?” But by being very explicit about the play bubble, you can then limit it effectively when you’re not in the play bubble. That would be a place where it comes easy to talk about play or explore these things.
Being somebody with either a lot of sticky thoughts, or someone who doesn’t communicate their ideas easily, must feel like they’re getting corrected and chastised a lot, Dave says, so we want to give them a lot of opportunity to expand on their ideas so they can come more reciprocal and more connected to the ideas of other people around them, and at the same time learn to manage those impulses when they’re not in those safe spaces.
We don’t want to censor ‘play’
In my Basic Certificate DIR/Floortime course, one of the case presentations was about a child who was playing jail with the therapist and said, “I’m going to arrest you!” and Occupational Therapist, Maude Le Roux, said it’s so important to let the child enact what they’re imagining in play so it gets resolved. Allowing kids to play it out helps them to process it and understand why it wouldn’t work in the real world. Dave says that in general, for somebody who tends towards rigid thinking or black and white thinking, or who hasn’t reached multi-causal thinking yet, that process of play isn’t just a one-time thing.
They may need to play it out 1,000 times. You can then offer them 100,000 different responses to that so they can build a conceptual understanding versus a rigid, “I can’t talk about that” understanding, Dave explains. We think that someone we’re interacting with has a nuanced understanding about something then you realize that they think that if they do this thing or that, they’ll go to jail. The recurrence and repetitiveness of play is an important part of helping someone develop shades of gray, multi-causal thinking, and these higher capacities.
I wanted to make the distinction between playfully playing with ideas versus entertaining ideas of what could become criminal activities. A parent shared at ICDL’s parent support meeting that their young son is sniffing his older sister’s butt and giggling, but the sister doesn’t like that. It’s silly but at the same time, they want to affirm to the sister that it’s not ok to let boys sniff her butt. Dave says that this is a great example because yes, other people are affected by this as well.
Even if you have some idea of the best way to support the child who’s sniffing butts is to be playful, you can’t ignore the fact that somebody else is being subjected to something they don’t consent to. We need to support that.
Whatever limit-setting you do, you have to realize that it’s not the primary way they’re going to learn something. The way they’re going to learn something is by that active, engaged, reciprocal, play-based, or a conversational back-and-forth.
Dave Nelson, Licensed Professional CounselorIt’s how we gradually develop the nuance and sophistication of perspective and points of view. So the limit-setting is important in keeping people safe and communicating to that sibling that their bodily integrity is matters, but it’s not going to teach that child self control. That comes in a different context. It’s hard at every age, and maybe gets harder in adolescence when you can get arrested or get in trouble.
Positively engage while setting limits
It’s one thing to understand that you have to set a limit, but what happens when you’re not there to set the limit, I point out to Dave. That’s ultimately what you’re working towards, Dave assures me. Having worked with so many adolescents and adults, he says that what we’re working towards is for people to be safe and functional individuals in the world to make decisions, even if they can’t be fully independent. You have to be playing the long game from the beginning, he insists.
Even if you set a rule that “we’re not going to sniff butts in this house“, it’s not necessarily addressing the underlying developmental issue that we will need to have a better decision-making going forward. That’s where the curiosity and judgment comes in. Is this a sensory stimulation thing? Don’t most people think that farting is hysterical? There’s lots of contexts where that’s perfectly acceptable and normal, Dave asserts–maybe without quite the filter that we would expect or the self-restraint. It’s not like we’re going to purge these ideas or thoughts from the person, so we might as well embrace it or figure out how to use it in a safe and functional way.
Maybe it is exploring different kinds of smells or doing pretend play around farting or butts or poop, Dave suggests. That, then, may also come along with specific limit-setting about what you can and cannot do with other people, but you have to stay curious about what’s driving those behaviours, Dave explains.
What do we do when kids catastrophize?
“My son gets stuck in a ‘negative brain’“, a parent recently shared. “Everything is bad, awful, and scary. His amygdala flips out on what-if questions and we do a lot of work to not deny those things but to bring him back down to that’s not happening right now. So, part of educating him is also educating him on safety and boundaries BUT not flip his brain into all the bad things that can happen. Not just to him… but to understand how he needs to respect others and not violate their boundaries.” I asked Dave for his thoughts.
Dave says it’s a great follow-up question to everything we’ve been talking about because when we’re talking about separating someone to calm them down–co-regulating and re-engaging with them–a challenge is that we may have a child who is just very hair-trigger reactive, overstimulated easily, an anxious type, and/or quick to get into this global negative thinking. Whether you’re on the spectrum or not, it’s challenging and affects your behaviour, the decisions you make, the things you watch, and careers and friends that you choose, Dave explains, because if you’re spending a lot of your energy avoiding being in fight or flight and worse-case scenarios, then it’s going to be hard to take the emotional risks that we need to connect with others and learn and grow.
Going back to the DIR concept, it’s not just about the profile of the child, but also of the profile of the caregiver and how it matches up. If you’re a very sensitive, reactive, control-oriented parent and you have a very sensitive, reactive, control-oriented child, it’s going to be harder for you to work that out, Dave suggests. Ultimately, he says, what you want to do–how ever narrow it may be–is find that band where your child is a little dysregulated, a little anxious, and/or a little concerned, but still able to open and close circles, and to maybe laugh or be challenged in the context of play or in Floortime.
Otherwise, Dave continues, once they get in to that rigid, catastrophic thinking, you’re not going to be able to use logic or information to help them, in most cases. You’ll have to go back to Capacities 1, 2, and 3: calming, soothing, re-regulating, re-engaging, interacting and working back up to that cognitive level. That’s where medication, or Occupational Therapy, or however you construct your environment, can give people as much latitude as you can without getting people into a flight or flight, catastrophic reaction.
Collaborate with the person you’re trying to support
Dave gives the example of being afraid of dogs. You can’t just throw someone in with dogs. It will take many positive, supported experiences with dogs, talking cognitively about dogs, and more. There’s not one thing that will fix it and it’s not always totally fixable, but with gentle, nurturing support you can integrate that part of yourself into your life so you can function. So if you’re someone who’s quick to get anxious–whether it’s time-anxious, or social anxiety, you’ll have to do a lot more anticipating and preparing and approaching things gently, and not staying in them too long, then processing and reflecting on the positive experiences.
A lot of our kids really do get stuck. Individual profiles who don’t shift gears easily take recognition of the people around that person that there’s going to be individualized things that work when that person gets stuck. As much as possible, you want to collaborate with the person you’re trying to support. You can say to them that there might be times where you harp on something and I’ll just say, “Snap out of it!“–not to be judgmental, but just to help you, so it can become a collaborative self-aware experience over time.
You won’t do this with a 3-year-old, but more with a 7-, 10-, or 13-year-old. Slowly bring them in to the process of what you’re going to do to help them. Over time that will help them get better at saying, “Actually that’s not helpful. Let’s figure out a better way.” You want the person you’re supporting to gradually become more self-determining so that means working with them, and getting them more engaged in helping you support them.
Being the Parent
I mentioned to Dave that I am still clipping my son’s toenails while he sleeps because trying to do it while he’s awake drives him straight into fight or flight. I had met an acquaintance’s 25-year-old autistic son a few years ago and asked him about the experience of getting his nails clipped. He described to me how aversive it was to him and that helped me have empathy for what my son experiences in those moments of attempted foot grooming.
Re-iterating both for yourself, I’m the mom here, I have certain responsibilities, I’m not doing this to make your life miserable. This is something that has to be done. There’s a cognitive override that says you need to do this and it’s ok. Having a clear sense of I’m a mother and this is my job, it makes it easier. Other times, you can say, Ok I think this is my job, but is it really important. Sometimes the answer will be yes and sometimes will be no.
For all parents and all parenting, Dave says, but especially for our kids, you have got to be consulting with other people and have a support network of other outside people who you can talk this stuff through to get some outside grounding. The more you’re in the bubbles with your child, it’s hard to know if you’re doing the right thing, Dave suggests. Dave gave an example of a young man he knows who leaves his nails about half an inch long and is now in college.
There are social implications to not cutting nails, but it’s a gradual education and a self-awareness project, being attuned to how others will react to that. This young man’s parents have said, “This is your decision.” It wasn’t worth going to war over. These are the complicated, individualized decisions that we always have to make, Dave continues. Is this the place where I’m drawing the line? When will you fight a battle and when will you let something go? The larger goal is the autonomy, safety and purposefulness of an adult.
Dave says that you have to keep returning of the guiding principles of what you’re trying to doing in supporting your child in becoming an adult and deciding what’s important because you believe it’s important or figuring out if it’s only important because of an external cause or reason.
Symbolic thinking
I asked Dave about symbolic thinking and abstract concepts such as ‘love’ or ‘relationships’. Dave says that he likes to use language. It’s comfortable for him to speak in complex language. But whether you’re interacting with young children or individuals with developmental challenges, you can’t speak from your comfort zone. You have to meet them where they are developmentally. When you’re talking about issues of behavioural control, and particularly sexually, if someone doesn’t have symbolic thinking, you’ll have to create behavioural control and set physical or other limits to keep people from doing things they shouldn’t be doing and you can’t always explain why, Dave explains.
This brings us back to play and why it’s so important. When you see something in a visual domain and represent ideas with other things, it will help you develop the language ability to do that. How do you communicate with people without using a lot of language? Visual pictures or picture or simple books are great and are important to take advantage of, but it doesn’t mean that the symbolic understanding is there, necessarily.
Aconcept like love is very abstract, but Dave says let’s consider how Dr. Greenspan would use the example of how we learn what an apple is. It’s not just a red ball. It’s invested with emotional meaning such as how it tasted when you bit into it or what it felt like when you threw it at your brother. Love is a million different things, Dave says. You want to start putting things in the category of ‘love’. Baking cookies for somebody is an act of love, he says. Putting somebody to bed is an act of love, Dave says.
Dave says we can help somebody to have experiences and then gradually categorize those experiences. Dave made a timeline like a calendar and he’d talk with a client about things that happened each week. Gradually through play and interaction and the support of the visual timeline, they’d put a stick figure picture on each event on the timeline ,and over time they would categorize these things so you could point to all of the things that were fun, that were not fun, etc. It helps someone think of more things, more conceptually. You can begin to build the conceptual out of the specific.
This week’s PRACTICE TIP:This week let’s see if we can engage in our children’s curiosities, even if they say something ‘taboo’.
For example: When your child says something you don’t want them saying in public, label that as a ‘home only’ or ‘private topic’ (or the word of your choice) and engage them with curiosity, wondering what it is they like about that word, that object, or that idea. See if you can interact and ‘play’ with the idea for a number of circles of interactions.
Thank you to Dave Nelson for discussing these difficult topics that come up with puberty in our children, through a DIR/Floortime lens. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Curiosity as a Driver of Connection and Interaction in Adolescence appeared first on Affect Autism: We chose play, joy every day.
This Week’s Topic
This week I welcome Eric Goll, the creator of Empowering Ability. I regularly watch Eric’s weekly 5-minute video tips, attended his free life plan workshop and took his online course, realizing it was what I needed for where I was at with my son entering adolescence. I still do almost everything for my child and it’s time to begin fostering his independence! I was happy to see that many of Eric’s principles are completely in line with those of the Developmental, Individual differences, Relationship-based (DIR) Floortime approach.
This Week’s Guest
Eric Goll offers online courses and training to support our loved ones with developmental disabilities to be valued citizens and create their own Awesome ‘Ordinary’ Life. He is located right near west of Toronto, Canada. His experience with his own family sparked his desire to bring what he’s learned to the masses.
Empowering Abilityby Affect Autism
https://affectautism.com/wp-content/uploads/2023/02/2023-02-04.mp3Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Eric’s Story
Eric always knew his family was different from other families. As the younger brother of a sister with a developmental and physical disability, he was defensive when others stared, and aware that his sister was different. But he wasn’t really directly involved in his sister’s life, per se. He went off to university, got his own place and a job and received a call at work one day from his mother who said, “I can’t do this anymore. Sarah needs to move out.” His mother had caregiver burnout. She had done everything for his sister for 30 years and couldn’t do it anymore.
Eric says that while his sister was now a young woman in her thirties, his parents were still treating her like a child. Their thinking hadn’t evolved and they still did everything for her from planning her day, preparing her food, getting her to social activities, lifting her, etc. Eric had a decision to make. Did he want to get involved and help or leave them to figure it out on their own? He decided to help and so they first looked into the service model which was not very helpful. They had to look at alternative options. They started to look at what a more ‘ordinary’ life would look like for his sister.
A ‘Special Needs’ versus an ‘Ordinary’ Life
Eric says that a typical ‘special needs’ life is someone living at home and going to a day program, or living in a group home. But Eric explored another path of his sister living a more ‘ordinary’ life. What would it look like for her to freely build new relationships? To become more capable? To live in her own home, maybe with a supporting roommate? To explore paid employment? Yes, there’s a ton of things to figure out, Eric explained. They began to envision what this could look like and then she moved in with Eric for two years. This is when Eric learned about the capability stuff and became a Certified Life Coach.
Next, Eric’s sister moved out on her own and the plan was for her to have a neurotypical roommate to have someone else there who could be there to make decisions and meals together, etc. But his sister wanted to live on her own. They figured it out and she’s doing great for about three years now. Five years ago her mother was doing everything for her. Today, she gets herself up in the morning, gets herself ready, makes herself breakfast, prepares herself a lunch, and has paid support to help her with self-care and dinner. Before the pandemic she volunteered at the YMCA, she has a support circle with relationships. Her life is pretty awesome now.
Eric's Empowering Ability Links12 Top Secret Independence Tips
5-minute Independence Tips Videos
The Life Plan Coaching Program
Seeing Capability
I shared with Eric that I think a lot of parents are scared to let their kids do things on their own for fear of them failing, hurting themselves, or being laughed at and we are also creatures of habit so we keep doing what works. We forget that our child is growing and developing and has so much capability than we give them credit for. This is what spoke to me with Eric’s work. It’s a big step to realize that our loved one is capable and one that we wouldn’t consciously think we’re not doing until we really think about it. Eric says this is a mindset.
The challenge, Eric continues, is that the societal dialogue and thinking is that people with developmental disabilities are incapable, and because of that, low expectations are put on them. We adopt that thinking as families. The medical system tells that to families, too. We believe it, but it’s likely not true, Eric reassures. The school system also reinforces these expectations. It’s up to us to see the potential because it’s likely that others won’t. I added that people around us get cues from us based on how we treat our children as well.
Eric’s tips include ‘See Your Loved One as Capable’, ‘Stop Directing and Telling’, and ‘Support Decision Making’, to name a few and in DIR/Floortime we also try to get away from a compliance model and inspire relating, communicating, and thinking as Eric does. Eric also takes about letting your loved one lead, as we do in Floortime as well. Eric also says to go at your loved one’s pace as we talk about meeting your child where they are developmentally and slowing down. He also talks about taking small steps and about routine and repetition.
Let Them Fail
Eric says that so often we are protecting our loved one, but the problem with that is that one of the main ways we learn is by trying things and seeing a result that won’t always turn out how we want. If we always intervene and interrupt the natural consequence, it breaks the learning cycle and our loved one learns that someone will always step in and save them. Eric brings up the concept of the Dignity of Risk first outlined in 1972 by Robert Perske where taking the right amount of risk is a key way in which we grow.
It’s about leaving an open space and invitation for our loved one to attempt to figure it out, which means we have to be comfortable with the uncomfortable moments that this can bring up. Eric says it’s such an important skill as well to teach our loved one to ask for help. We often see what our loved one wants and we do it for them instead of giving them that learning opportunity. Your loved one has learned that we will look at them and figure out what they want or even speak for them when people ask them a question. Give them the chance to communicate and ask for help themselves in case we’re not there one day.
I described how I enable my child in many ways that I could start doing in a different way to facilitate his learning. For example, someone might ask my son how his weekend was and he might respond with something completely seemingly unrelated by going on about Toad in a Kingdom and I will always bridge the gap by jumping in and saying, “Oh he’s telling you about the video game he played this weekend“. I jump in all the time. But I do sometimes say, “Wait a second. They don’t know what you’re talking about! What’s that?” and he might say the name of the video game.
As he develops Theory of Mind and the capacity to see another’s perspective in the fourth Functional Emotional Developmental Capacity, he may not pick up on the cues that another person doesn’t understand his response. I also gave the example of him struggling with something and giving up when he is capable of solving the problem himself, such as when his toy needs a new battery. Often he’ll default to, “Help, Mama! I can’t do it!” and by the time I walk over to help, he’s changed the battery himself. I will say to him, “You can figure it out!” but saying that cognitively is very different than him feeling that he can do it himself.
I also am weary of saying things like, “Good job! You did it!” because you don’t know if the child is just doing it to feel that approval from you versus having that intrinsic sense of accomplishment from doing something themselves. Eric says that he coaches families to ask, “How do you feel about what you did?” so that it stems from an internal sense versus an external motivation from us.
Focusing on Development
Most of the families Eric serves have a loved one who is transitioning into adulthood or is an adult. Eric doesn’t talk about diagnosis because his approach is to focus on helping the loved one continue to develop, and that is an individualized process. Eric also wants to look at the social side of disability, and how to freely build relationships. What are the ordinary good things in life, and how can our loved one have more of these things? The earlier you start the better because in my case, if I start this while my son is 13, he’ll be in a better place when he’s say, 18, or 20, versus starting when he’s 18.
Eric also talks about developing and maintaining these freely given relationships. The earlier you can start this, the more relationship-capital you can get out of it, he stresses. I talked about how common it is for caregivers to beat themselves up for not doing enough earlier, but how we have to accept that we are doing the best we can as we have the information we need, and that everyone is in a different place with different resources and capabilities themselves.
The Life Plan Coaching Program
Eric says that the best thing to do is download his free guide on his website. He offers two courses. The one he focuses on the most is the Life Plan Coaching Program, which is a 10- to 12-week online course that focuses on building a life plan that isn’t a ‘special needs’ life but an ‘ordinary life’ around six key areas, or life domains, that are really important to all of us that we all need to think about, even if it seems unrealistic at this time:
- Capability – that independence piece
- Relationships – developing and maintaining natural relationships
- Contribution – building valued roles such as employment and contributing in ordinary community places
- Creating Home – what would the best home look like that isn’t a group home and how would you feel living in that home
- Support and Finance – what type of paid support and other support will your loved one need? how will your loved one manage money and wills, trusts, etc.
- Awesomeness – all the other things we want including fun, adventure, romance, spirituality, culture, etc.
Eric then walks through areas of preparation as well such as our emotional readiness as family members. If Mama Bear isn’t ready, for instance, Eric explains, then the loved one won’t be ready. He also talks about learning about the ordinary possibilities. What are other people with disabilities doing? Where are they living? What are their jobs? What are their roles in the community? What are the relationships they have? How have they grown their capability/independence? It helps to see other examples of this even if their disabilities are different. It expands our thinking.
Eric shares with families that it’s important to always be taking small steps. Even if you only take one small step per week, that’s 52 steps in a year, and if you look back to where you are at the end of the year, you will notice the difference in both you and your loved one. Don’t skip over the importance of the small steps and celebrate them, Eric stresses.
The Independence Coaching Program
Eric uses the terms ‘independence’ and ‘capability’ interchangeably. He is careful with the word, ‘independence’ which can imply that you do everything on your own, and family’s think that won’t be for their loved one. Eric instead talks about helping our loved ones do more everyday things and having the motivation to do them, and that can be with some support. The Independence Coaching Program is around 6-7 weeks and focuses on step-by-step process to help their loved one grow their capability.
This course includes the inner work we need to do as family members to start to shift the decision-making or power dynamic in our relationship with our loved one to distribute the power more equally, and giving our loved one more agency. As they develop more agency, they’ll start making more decisions and be more intrinsically motivated to do things on their own. The courses have video lessons and an accompanying workbook. It comes along with three group coaching calls once per month as well. Eric gives you the tools, but you have to do the work yourself and implement it because nobody can do the work for you.
Examples of Small Steps
I asked Eric how I could start taking small steps with my son around preparing food for himself. Eric says it really depends on where your child is developmentally. He says it also depends on what skills they have in the kitchen. I mentioned that I’d also want to help them make healthy choices versus just eating something unhealthy that they like over and over again. Eric says he would start with something more simple such as breakfast or lunch before tackling a more complex meal like dinner. But even before that, he says, he would ask what you think your loved one would be interested in learning.
Maybe they have to wait for us to do certain things and it’s frustrating, so it might benefit them to start it on their own. For instance, when Eric started out, his sister was interested in making her own breakfast or doing her own laundry. It’s a win-win for us if our loved ones learn these skills because they become more independent and we don’t have to do it. First, start with asking them to enter in to a conversation. Ask if you could find some solutions together. It would be really helpful if they could help out and would they be open with that versus telling them they will be doing this new task, Eric says.
You can ask if there’s one thing they can think of helping out with. This will increase their motivation. They might say they don’t know if they’re not used to having agency. You can offer a few ideas and have them pick one. You can say that you know they get frustrated waiting around for breakfast and ask if they’d like to learn to get their own breakfast or that they might want to have their clothes washed sooner and would they like to learn how to do the laundry? Let them pick.
Tackling our Extreme Worry
I asked Eric how we begin to overcome excessive worrying about our loved one’s safety. I’m worried about the stranger that comes to the door, or letting someone in that they shouldn’t, or an issue with toileting and personal hygiene. Eric says it’s important to get specific about the worry, then you can safeguard the vulnerability that the loved one has. There are developmental safeguards (i.e., what can our loved one learn to protect themselves in that situation, such as training around door safety like not letting anybody in unless you see them and recognize their voice), and protectionary safeguards (i.e., what other people can be put in place to keep our loved one safe, or technologically, externally).
For Eric’s sister, there’s the step of opening the front door of her building from her apartment, then seeing who’s there when she arrives at her door through a screen that allows her to see who’s there. That device also takes a photo of who’s at the door. You can also then think about the people such as your loved one’s neighbours who keep an eye on people coming and going, for instance. Eric says that you also want to find a balance between your loved one’s privacy and their safety. Eric always encourages families to talk about these things with their loved ones rather than just tracking them. Respect your loved one.
This week’s PRACTICE TIP:This week let’s take stock of the things we do for our children that they are capable of doing themselves. Think about how we can start to facilitate their independence.
For example: Can we show our child how to get dressed themselves or prepare themselves a snack? Can we get them to help with laundry or other household chores that will help them become more independent in the future?
Thank you to Eric Goll for telling us about the amazing courses and videos he provides. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Empowering Ability appeared first on Affect Autism: We chose play, joy every day.
Photo by Photo Credit: Markus Spiske on Unsplash
What is DIR?What is Floortime?DIR GlossaryThe Dynamic Process of 'Transitions'by Affect Autism
https://affectautism.com/wp-content/uploads/2023/01/2023-01-21.mp3This Week’s Topic
This week I’m pleased to welcome Helen Groth as my guest to discuss the dynamic process of ‘transitions’ in autism. Helen gave a fabulous presentation on Transitions at the International Council on Development and Learning (ICDL) 2022 Virtual DIR/Floortime Conference that I took so much away from and I am so excited to welcome her this week to share her presentation material with us!
This Week’s GuestHelen Groth is a British trained, dynamic special educator currently living in Milwaukee, Wisconsin who has a private practice called Play Potential. Although she hails from the United Kingdom, Helen spent many years living and working in Singapore. Her work is rooted in relationships: building trust with families through respectful interactions. She is a life-long student who is always reading and learning through additional training and mentorship.
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!What is a ‘Transition’?
When Colette Ryan presents, Helen starts, she always starts with a definition. The dictionary says that a transition is “the process or period of changing from one state or condition to another” or “the act of experiencing a change“. Helen finds that looking at synonyms can also be helpful: flux, growth, switch, shift, adjustment, adaptation, transformation, or evolution. For Helen, a transition involves two things: the capacity to stop what you’re doing currently, and the capacity to start doing the next thing.
This process can seem simple, but it can stir up such strong emotions in our kids, such as at school drop-off. Autistic self-advocate, Kieran Rose discussed in a past podcast how neurodivergent individuals get immersed in what they’re doing and it’s like having to suck them out of a black hole and having to focus on something else. At my son’s nursery school the teachers used a catchy song whenever the kids had to transition–a tool to aid with the transition.
Helen asks what it is that causes that dysregulation in a child after being so calm in their activity? Think about the example of enjoying a playground (having fun moving and swinging and sliding) and then what happens when you have to leave and get into your car seat (which restricts your movement so much). What about new shoes or new clothes? It can even simply be that you washed the leggings and now they’re more snug, Helen continues.
One phrase Helen used during the presentation that stuck with me was the description of a transition being “moving from the known to the new“. Many of our children cannot picture what is not right in front of them and they are living in the moment, so they are doing something familiar and organizing then suddenly have to move on to something they have no concept about, which is very dysregulating for them.
Transitions as Stress
Helen recalls that at the ICDL Conference last October, Stuart Shanker defined ‘stress’ as anything that causes us to burn energy to maintain the body’s homeostatis. We turn this stress off for children through our Relationship, Helen explains. We don’t want anyone to be doing this transition independently, Helen says. We want them to be doing it interdependently within that relationship with their caregiver, with their teacher, etc. so they have that support in place to move from the known to the new.
While novelty and ‘the unknown’ can often cause great stress to our kids, some kids can feed off of novelty as well. My son loves going out to restaurants and going to hotels, which are different every time experiences and if around his area of interest, he loves going to new places. It’s part of the frustration for parents that our kids are fine doing some things, but not others. We often wonder what’s going to set off my kid today? And being tired, sick, or hungry, among other things, can affect how they react to transitions as well.
That’s the ‘I‘, Helen points out. It’s the individual characteristics of our children in each moment. It’s about us being able to read their cues, she explains, and about supporting our child to be a strong cue sender as well. Novelty creates alertness in their system, captivating them. Without that novelty, Helen says, some children can quickly get bored. But with our Floortime eyes we can see the safety in predictability. Some people can see that as rigidity, but it can be regulating and organizing, Helen offers. We need to be in the moment and be present to what’s happening, keeping our calm and cool.
I asked Helen what’s happening in the brain during transitions. It depends on which state you’re in, Helen answers. How can we use ourselves to turn the child’s flight or fight response off by being with the child in a very gentle and soft way, having an invitation to engage, reducing that threat level to get back to that safety zone for them. We’re not adding another demand on them, Helen outlines.
Referring to the slide from Helen’s 2022 conference presentation seen here, if the child is feeling any of the things in the left column, it is threatening to them. The child gets a sense of safety from things on the right side of the slide which support this ‘felt’ sense of safety, rather than a ‘don’t touch it because it’s hot‘ safety, Helen clarifies. It’s an internal radar, or a neuroception that Stephen Porges talks about which is a subconscious sense that we are safe and that the Relationship we are in is nurturing and pleasurable to us. We can thrive and move from one thing to the next thing when we’re in this sense of safety.
How can we support and scaffold transitions?
If a practitioner has a 45-minute appointment with a child and the child screams for 20 minutes, the therapist feels they can’t do what they want to do in the session, and the parent is frustrated they paid for a full session but lost half of it. Helen says we need to drop that agenda of our own to give the child what they need in the moment by supporting them. Instead, we need to modify ourselves and our Relationship, building the capacity to shift from one thing to the next. There’s a learning opportunity for everybody to be in the moment together, to learn together, and co-regulate together. Get rid of the need to move on, Helen stresses.
Helen says it’s about just ‘being’ with somebody, honoring that person, and connecting with them. We need the whole range of emotions. Some emotions are easier for a parent and some are less easy, Helen offers, but children need the experience of having a challenging moment and knowing they’re cared for and valued through all of these emotions, Helen assures. This is something a lot of people overlook, I add. ‘The work‘ is the meltdown. It’s the most stress I’ve experienced when my son is stressed. What better way to lower our stress than to learn how to deal with what to do when we are stressed?
What can we do for both of us to get regulated again? Helen says it’s about the capacity to stay in the moment, whatever the moment is, whether we’re experiencing pleasure eating ice cream or when we hear the ‘shark music’ from Circle of Security. We’re giving our children opportunities to practice with us when they are disorganized and dysregulated, Helen says, because it’s scary feeling disorganized and dysregulated with unfamiliar adults. We are giving them repeated experiences, safely. There’s no rush in Floortime. “You’re creating an intentional pause that feels like an invitation.” Slow down and stay in the moment, she suggests.
And sometimes our kids will mask in front of strangers because it doesn’t feel safe to meltdown, so the parents experience all the meltdowns, I add. We’re creating a space for them to initiate into, Helen repeats. It’s not us leading with our agenda, but us creating that pause–that safe landing space–and waiting for them to initiate, as suggested in my ‘Going slower to move faster‘ podcast. When we provide that gift of time, Helen continues, it gives us the opportunity to adjust, shift, and reconnect. Then the child can adjust and shift in their body and find meaning in it. We always feel like we have to solve it, I add. They have to learn to solve it for themselves with our help. We want to be that safety buffer while they figure it out.
Wondering questionsThese are ways of adjusting ourselves and ways of being with our child, Helen suggests. We can also ask ourselves wondering questions to support ourselves in the moment, to have a curious mindset, and to be non-judgmental to guide your thinking in the moment. You might do this when watching a video of a recorded session, she continues. Frame the self-reflection with wondering questions. If we think about the Floortime model, to frame all of our thinking, we want to look for their strengths and wonder how we can build from those to support vulnerability:
- What’s disrupting the interaction?
- What are the child’s vulnerabilities and what we can do to scaffold and support them?
- How can we adjust and attune ourselves so we can support the child and ourselves in this moment?
- What will it take for this individual to feel safe in a new situation?
- How do we create safety for them? What will they need?
- What does this individual find comfort in?
- How big is that transition for the child? Is it a big moment or a smaller transition moment?
- What is their experience with transitions? Have they had moments where they’ve experienced support, scaffolding, empathy and respect? Or have they had stressful moments of being hurried with an adult’s agenda because sometimes we have to get to the dentist or to school?
- Is there a motivator I can harness or a de-motivator I can evaporate?
- If these difficulties are happening in a session, how is the parent feeling in the moment and how can we support them as well?
- What’s the meaning for the child in the transition? Be Playful
Helen says that we can create fun in the movement from A to B such as a transition song, or by using scooter boards to experience fun during the transition, as Gretchen Kamke says. We’re not looking for an answer, Helen states, but we are supporting our own regulation. We add the cognitive piece where we can try to scaffold our thinking and ways of being through considering different aspects of the transition moment, she says. Floortime is all about the playing. There’s so much complexity supporting play in our ways of being with that other person.
Our playfulness supports the foundation of safety, Helen states. It supports the brain to function as an integrated whole so we don’t lose the brain-body connection that Mona Delahooke talks about. Through our playing and depth in it, it’s through our therapeutic use of self and in the intentional decisions we’re making in the moment to support the child, informed by self-reflection and wondering questions, Helen says. We come along side the child, following the child’s lead, be together, join the child’s world rather than pulling them into ours to follow our agenda, pause and wait–actively waiting posing the wondering questions to ourselves internally, being fully available and in the moment, matching their affect and energy and shift.
From there, we’re building rhythmicity, supporting and scaffolding so they can reach that homeostatic state again, building bridges for the child to use, adding structure they can use to support themselves to get to the next spot, and always joining the child first so we can create that shared world and connection. We’re not imposing or directing them, and not controlling or diverting them. The range of emotions is what we need to feel, Helen continues. Consider what’s the right challenge in this moment or the right invitation to create that ‘just right’ success for the child to move through this to get to the next thing that’s creating their uncertainty, Helen says.
Interoception
Staying in the moment and joining the child is so often overlooked. It’s really about empathetically looking at the child and wondering what the child is experiencing right now. It seems abstract. It’s overlooked all the time. Everybody’s trying to rush to the next thing. Sitting in the moment and literally doing nothing but experiencing the child without trying to fix it is difficult for caregivers to do, I state. It’s not something to fix, Helen responded. This moment might be more difficult than the last or the next, but it’s nothing to move away from. It’s just an aspect of life. To experience the joy of life, we have to experience those difficult moments. We have to embrace all of them, Helen insists.
This is the distinction of feeling the transition versus a cognitive memorization of coping through it, I added. Feeling the disappointment of not wanting to leave and being scared that something is about to happen that I don’t want, and being mad that my caregiver isn’t stopping it and being mad at the person who’s making me do this is a process. It gets into the interoception piece. We’re constantly building up a library of experiences that feel safe or not, and we want children to notice what is a good experience and what feels less comfortable for them.
This is important information that keeps our children safe, Helen adds. We want them to know this about themselves and have that internal sense and interoceptive awareness of what feels good to their body and their mind and what feels less good to them because it makes you vulnerable if you don’t know these things about yourself. We want them to have resilience and to have tools for every moment, and to be able to set boundaries for themselves. In a past podcast we talked about the importance of having the opportunity to say ‘no’.
We use our own therapeutic use of self in alliance with the activities the child chooses to set the stage to create that entry point.
Kim BarthelCanadian Occupational Therapist
Trauma
Sometimes our children’s reactions to transitions could be a result of trauma. We may have no idea what a child has experienced in the past. Transitions cause uncertainty, which is disorganizing for the body and the brain, so we lose that brain-body connection and don’t feel safe. In that sense, transitions can be traumatic for a child. The core of a traumatic moment is that sense of ‘I don’t feel safe‘, Helen explains. It doesn’t have to be a big event or a repeated small event over time, Helen argues. They can be your own body that is a traumatic experience on a daily basis for people. Trauma can be anything that overwhelms your nervous system and we can see there’s big overwhelm in the emotions we see our children experiencing.
The D.I.R. Model
R: We talked about how the Relationship supports transitions. Occupational Therapist, Dr. Virginia Spielmann talks about this saying, “The art of over time modifying the relationship to build each individual’s empowered sense of autonomy.” It’s the individual’s sense of what creates meaning or purpose for them, Helen says. What do we need to do to support somebody to have agency in their transition? It’s not a compliance of ‘just do it’, Helen explains. We want to support them to move at their own pace for their own purpose so their body is organized for that purpose. I add that once you have those ‘pennies in the bank‘ with somebody, a sense of safety comes with that.
I: Individual differences. Helen talked about children’s sensory systems causing them to feel trauma that many of us don’t notice whether it’s flickering lights, or hearing every noise without filtering out irrelevant sound input, or tactile sensitivities. But our own individual differences come into play as well. Helen showed a couple of slides in her conference presentation about ‘ways of being’ shown here. How we can be all of these things for the child depends on our own ‘I‘ in how we can get into a state where we can be any of these ways. I’ve talked about in the past how if I was outside on the grass in the summer with bees, my capacity for being this way would be much lower.
How we’re positioning ourselves, our facial expressions, etc. all contribute to our emotional tone to the child feeling us, Helen explains. We’re supporting and scaffolding them in the moment. What configuration of these ways of being do we need in any one moment to support the child and ourselves through those transitional moments? The most effective tool in Floortime is ourselves, Helen says. We create that intentional pause for ourselves to be in the moment. These are all tools to create that transition more smoothly. They are ways to hold the space and offering an invitation to the child, Helen says.
D: Developmental capacities. We will cover this in the case study section below.
An ‘Invitation’ Approach
In her conference presentation, Helen had talked about the concept of ‘curiosity’ and “an invitation approach”, defining curiosity as a “lack of hope and expectation” (Frank Ostaseski quote). It’s a ‘just-wait-and-see’ approach, as an observer. It’s ‘wait-watch-wonder’, as we say in Floortime. Curiosity is just essential for Helen, she says, and harnessing that power of curiosity. It’s not judgmental, there’s no agenda to it. It’s information seeking to support. It has a sense of compassion to it and is respectful because you’re not diving in and doing anything, she explains.
We talked about the wisdom quote above that Helen had presented at the conference. Every parent wants the tools and instructions, but it’s important that while you have ideas of what you can try, it’s so important to not put that in between you and the child, otherwise you’re not really in the moment. For Helen that humanity is the respect and curiosity. It’s being with somebody without trying to fix or change anything. It’s much easier said than done, but it’s a take-away for this podcast.
Case Study
A little girl gets very upset, throws toys and pushes other children when the teacher says it’s time to clean up and come to circle time. When the teacher comes to her, she starts screaming and says she’s not ready yet. Many would see the behaviour and say it has to stop. Helen says we need to stop and breathe, and have compassion for this child. It’s a difficult moment, so how can we scaffold and support the child? We need to acknowledge to ourselves this is difficult. Let’s think about how happy she was playing and how absorbed she was in that activity. Pulling her out is causing her intense stress.
Helen says we all do our best in the moment, but in reflection, after the fact, we can do better in the next moment, then the next day we can give more cues and warnings, geared to her. Maybe it’s gently coming over to her personally, maybe it’s giving her a tidy-up job, or maybe it’s 1:1 support from another adult in the room. How can we use this information from this chaotic moment to help us be wiser in another moment in the future? We can’t join this chaos and dysregulation. In the podcast on Self-reg and Floortime, and in Season 1, Episode 3 of ‘We chose play‘, Dr. Stuart Shanker said once you’re in that moment, there’s not much you can do. You can look at what happened just before that moment, then plan better for next time.
The ‘D‘ in DIR/Floortime dictates how far you can challenge someone helping them through the moment. You can come along side and mention what’s coming up and just saying, “Hmm… you don’t want to. We have a problem” and wait. I can do so much more with my son than I could 10 years ago when he was 3. He is able to have back-and-forth interactions while he’s upset now and socially problem-solve. It’s about getting through that moment and thinking ahead until the next time, keeping the child’s ‘I‘ in mind and using that ‘R‘.
There’s such complexity, Helen says. There’s so many aspects of their attention into the activity that they’re doing. Kieran Rose talks about the monotropism of the full focus where there is so much energy and depth of thinking going into that activity and then having to switch. Even with what we’ve covered today, we’ve barely touched on so many aspects of transitions, but I hope the audience has some take aways about staying in the moment, respecting the other’s experience, using the Relationship as a vehicle to transition, and allowing the child time and space to initiate some kind of adaptive response that we can scaffold through the transition.
The Tips and Tools
Helen wraps up with the tips and tools discussed today:
- Don’t be directive or push children through a difficult transition
- Reframe what you think needs to be done
- Think about the child’s experience
- Notice the cues in advance for next time
We get so used to doing things a certain way and our children get used to that and may become reliant on that, so in times of stress when we can’t do those comforting things, then we second guess ourselves. It’s such a dynamic process because not only is every transition different, but we change as our child is also growing and developing as well. It’s about having the capacity to be able to regulate ourselves in whatever moments we find ourselves in as a model for them to be able to regulate themselves in whatever moments they find themselves in.
And what’s too much comfort? Helen says that as much comfort, support and scaffolding as we can give to each other is to be respectful and authentic, and it supports somebody to find their own authenticity, agency, and way of doing something. If you don’t have that sense of comfort, where do you move from? Helen says that having those experiences of safety allows for that spring board. I gave the example of how by the second or third week of school, our children are more used to separating at drop off. So, go at the child’s pace and join them, Helen says. Appreciate where they are, developmentally, and what their journey is.
DIR is a lifespan model, Helen reminds us. There’s no rush in Floortime. There’s no right way or one way, she says. These are just ideas and suggestions to probe our thinking to reflect and invite a different response for next time.
This week’s PRACTICE TIP:This week let’s practice that intentional pause in moments of dysregulation with compassion and empathy in the safety of your relationship that presents the invitation to engage for the child.
For example: In a moment of dysregulation, stop, come to the child’s level and let them know with your body language and facial expression that you are there with them through this discomfort but stay quiet and calm. Imagine in your head what the child is experiencing, think about what just happened to make them distressed, and don’t try to solve the problem. Just wait, watch and wonder. See if you notice the child move through their dysregulation without you having to do anything for them.
Thank you to Helen Groth for discussing the dynamic process of transitions in autism with us, through a DIR/Floortime lens. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post The Dynamic Process of ‘Transitions’ appeared first on We chose play, joy every day.
Giant Steps School in Montréal, Québecby Affect Autism
https://affectautism.com/wp-content/uploads/2023/01/2023-01-07.mp3This Week’s Topic
Today I’m speaking with Marla Cable, the Resource and Training Centre Coordinator at Giant Steps School. Giant Steps is a developmental approach, individualized private school in the public interest in Montréal, Québec with 93 students aged 4 to 21 with an autism diagnosis. They have both English and French instruction and students are grouped by age clusters. Their school was visited by DIR/Floortime creator, Dr. Stanley Greenspan, in their early days and recently had Dr. Gil Tippy speak at their professional development day. They are now in the process of building their new facility that will open in the summer of 2023.
What is Giant Steps?
I asked Marla to tell us about Giant Steps. She said it all started with a music therapist working with a few kids with developmental disabilities and a demand from the parents wanting more. The therapist created a pilot project, called it Giant Steps, and got funding, and so it started from there, Marla explains. From the beginning it’s always been very innovative using a lot of the arts and social-emotional learning, and really looking at the interests and strengths of the kids and using them to support their challenges.
Although Giant Steps is not a DIR/Floortime school, it is influenced by the Developmental, Individual differences, Relationship-based (DIR) model, Relationship Development Intervention (RDI), and other developmental approaches. They borrow from a lot of approaches to meet the needs of their students. Each student’s program is very individualized. They’re mandated by the Québec Minister of Education to follow a certain curriculum and guidelines.
A Day at Giant Steps
Each day is very different for the students, but their week is similar. The kids in the school belong to a classroom, separated by age clusters. There are 93 kids from age 4 to 21. They move up as they age. Within the school they have 3 speech therapists, 3 Occupational Therapists, 2 Music Therapists, and they have developed other classrooms based on the needs of their students. There’s a life skills class, a class based on transitions out of school, a social skills classroom based on social-emotional learning, and a computer class. Students will attend their classes in blocks.
A Private School in the Public Interest
In Québec, the Minister of Education gives funding for the schools for the children who are coded with a diagnosis, so Giant Steps gets that full funding for their students. A typical private school may only get 60% funding from the government so they will charge the other 40% to the parents. Since Giant Steps gets 100% funding, they cannot charge a tuition fee. They have regular school fees that cover supervision fees during lunchtime or other fees like typical schools.
Due to their high ratio of adults to students and therapists, their funding does not come close to covering their costs so they have an active Foundation that is constantly fundraising to find the balance of the money they need. The students at Giant Steps learn in their mother language. They have an English sector and a French sector. In Québec, the children are required to learn the other language as well so Giant Steps also has these language classes.
The Classrooms and Staffing
In the classrooms, there’s anywhere between 8 and 12 students, depending on the age and the needs of those students, Marla explains. Giant Steps used to have a 1:1 ratio of student to educator, but it was not financially sustainable. Marla adds that each classroom has a certified teacher in charge, 1-2 educators, and 1-2 attendants as well. There’s generally about 4 adults in each classroom.
The educators generally come from the college program in Québec called Special Care Counselling, which is a program that teaches people how to be educators with a variety of different clientele in their learning process, to provide autonomy, and to deal with problem behaviour, etc. The attendants at Giant Steps, who on paper only need to have a high school education, tend to be highly trained and knowledgeable when it comes to autism–with experience and/or the educator qualifications–as they wait for a job opening at the educator level.
There is a huge amount of staff who have been at the school for 15 years or more and a large amount who have been there less than 5 years. Marla thinks it’s good to have senior and junior staff because the senior staff bring their expertise and knowledge that they can share with the newer staff, while the newer staff come in with their ideas, new experiences, and different ways of thinking that can be very beneficial as well.
The Inclusion Program
Giant Steps believes that any individual who can be in an inclusive environment should be, Marla affirms, so they have an Inclusion Program. They bring a child to a regular classroom in their own neighbourhood school with a support staff person with the hope that they will learn strategies and supports to be able to transition back to the school board without the support of Giant Steps. So, some students stay with Giant Steps temporarily and others stay longer, including until they’re 21.
Admission
Giant Steps has 93 students. Each year they can have anywhere from 1 to 10 new spots available. They survey their families each year to see who’s coming back, who’s aging out, or transitioning out to determine availability for the upcoming school year. They then look at the files on the wait list to see who fits the age bracket in the language of instruction. They then invite in about 3 children for every spot available and have a multi-disciplinary team evaluate them to determine who would best fit the program and to whom they can offer a spot, which is a difficult job to do, knowing they cannot help everyone.
There are about 350 individuals on the waiting list. The large wait list was one of the main reasons why Giant Steps created their Resource and Training Centre. They wanted to at least offer something to support families while they are on various wait lists since there are so many families who won’t be able to benefit from their child attending Giant Steps school on a daily basis.
Resource and Training Centre
The Resource and Training Centre at Giant Steps works to support professionals, teachers, families as well as the autism community across Québec. It has three mandates. First, it’s to help the Giant Steps community by supporting staff, students, and families. They have a room where they warehouse all of the supplies and supports used by the school which is a type of ‘lending library’ so people don’t have to recreate things that already exist, Marla explains. The Centre supports all of the staff in their professional development. On professional development days they bring in guest speakers, or offer readings or show videos. The field of autism is always changing and maturing so they have to keep up to date, Marla says. This is the internal resource centre.
The second mandate is that the resource centre is open to the general public and if they want to make or create teaching materials, Giant Steps can do that for them. They also offer courses, workshops, and conferences and either Giant Steps organizes them and they can attend, or sometimes other places (e.g., schools, daycare, organizations, sports facilities) request Giant Steps staff to come and present for them, both locally or over Zoom in places that aren’t nearby. They also offer consultation. For example, if a school has tried what they can and it’s not working with an autistic student, Giant Steps can send someone in and observe and give them strategies on how to support that individual.
The third mandate is a social mission, supporting schools and cities about what autism is and how they can be more welcoming to those with autism. This involves making sure the environment is autism friendly, Marla explains, or that their interviewing and job setting is welcoming to autism employees, for instance. The list has been growing whom Marla has been helping and supporting. They’ve done a lot of work with police officers, firefighters, museums, theatres, orchestras, community groups, and swim and skating instructors.
They also do a huge project every year with the Montréal airport where the families go through the whole process of flying and travelling. Families are at the airport for about 5 hours. They board a plane and go through the entire experience so they can be better prepared for the actual travel day. All of these services are offered in both French and English. All of these service reminded me of what KultureCity is doing where they train staff at large sports events and police officers, etc. It’s great to see it happening in Canada with a Canadian organization, too.
Insights from Training
I asked Marla if she can share any eye-opening experiences about what those trained learned, or about the lightbulbs that go off during these trainings. She gave the example of their huge programming with first responders that any police agency in Canada can access. In putting it together, what stood out to Marla was how Giant Steps was trying to get the officers to change all of their behaviour to support autistic individuals, but they realized that the police officers have their own mandate of rules and guidelines that sometimes as the general public, we’re not aware of.
Upon this realization, they made a section for officers, but also for teachers so they know what to be teaching their students. They made another section for parents and another for autistics so as a community, everyone can understand what types of behaviours they should and shouldn’t be doing if police officers are around to keep yourself safe. Similarly, the officers section covered what police officers should be doing to be supportive so situations don’t escalate. The police had a lot of ‘a-ha’ moments and it was eye-opening for them as well, Marla shares.
Marla found that insights also came up when she was training the orchestra in understanding how vast autism is and the strengths that come with it. I referred to the podcasts I did with self-advocate Kieran Rose about the myths of autism and the autism narrative and how everybody branches everything under autism, as Marla was explaining.
Fundraising
The Giant Steps Foundation is incredible and Marla gives hats off to them for how they’ve been able to raise about a million dollars each year, even through the pandemic, to provide Giant Steps school with the funding they need to function. It’s not cookie sales. It’s massive campaigns, she explains. They have a large auction every year. That’s one major event. They have companies and patrons who have been with them for years who are very generous and for whom they are extremely grateful.
Giant Steps Autism Centre
The new Giant Steps Autism Centre is in the process of being constructed. It’s a $52M project, which the Foundation has had to raise about half of. It’s a huge undertaking. The new Centre will be a new building in the centre of Montréal. It will have four pillars. The first will be their school. Their student body will increase from 90 to 120 students. The Resource and Training Center will also expand to include a community-like centre to support families during the evenings, weekends, and also during the day. It could include renting out the gym, parent or sibling classes, or social events, for instance.
They’ve also partnered with local universities to have researchers do research to impact how to support their students. It will be a way to get more cutting edge and new applied research studies to inform instruction and to make the lives better for autistic individuals, Marla says. It would be great if the autistic students can be a part of the research and learn to become researchers themselves, I added. Marla says that is indeed their goal and that when they did the first responders program they did include autistic adults in their program decision-making.
The fourth pillar will be adult services. Once students reach the age of 21, there is often no more services available to them, so if they are not employed, it can be tough for them. The new adult services will aim to fill that gap.
Employment
Giant Steps has a Polaris Enterprise employment experience where they’ve partnered with the grocery store, Loblaws. They have a practice supermarket so students learn all aspects of working at a grocery store from being a cashier, to stocking the shelves, etc. so they can eventually be hired as full-time employees with the same salary and benefits as any other employee, Marla explains. They’ve also worked with hotels in Québec and St-Hubert chicken restaurant who have started hiring autistic individuals as well.
Feedback from these employers is positive. They are blown away and don’t realize how successful it could be with a few modifications for employees. The employees are so proud and it changes their quality of life, Marla shares. Everyone ends up benefitting from the program. Marla adds that they aren’t limited to Montréal or Québec. If anyone in another location wants their help, services and support or tips, they are open to that. They really believe in sharing what they do, she says. They take in many interns from many colleges and universities because they do want to teach others to make life more inclusive for autistic individuals.
Marla adds that Giant Steps has also partnered with The Royal health organization to offer a free, 9-week caregiver program for parents of young children whether diagnosed or not to support them. They provide phone check-ins, Zoom home check-ins for coaching, etc. The coaching is provided by Giant Steps staff but the goal is to have a master trainer and facilitators who will provide these services on an ongoing basis to Canadian families. Marla says it’s filling that gap because families are always on waiting lists and want to know how they can help and support their children and help them communicate and develop skills.
Thank you to Marla Cable for telling us all about Giant Steps Montréal and the fabulous programs they offer to families. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Giant Steps School in Montréal, Québec appeared first on We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryPart 2: Adult Diagnosis and What it Meansby Affect Autism
https://affectautism.com/wp-content/uploads/2022/12/2022-12-17.mp3This Week’s TopicThis week, in Part 2, Kieran Rose and I will discuss late diagnosis and what it means. In Part 1 last week, we discussed a number of topics around neurodiversity including who to listen to as parents when our child is diagnosed with so many opinions out there, and the balance between what we want as parents for our children and what our kids actually need.
If you missed it, please check out our podcast which covered many topics including functioning labels and why they are not helpful, how people can be internalizers or externalizers, how Neurodivergence is in his infancy, Theory of Mind, and how context is so important when discussing anything.
Kieran was also my guest on a two-part podcast last year with Dr. Virginia Spielmann where we discussed redefining the false autism narratives including many topics such as Kieran’s personal history and diagnosis, building on strengths, ableism, the social and medical models of disability, learning from autistic self-advocates, and much more.
This Week’s GuestI’m pleased to welcome back autistic self-advocate, Kieran Rose, who is a published author, speaker, consultant, trainer, researcher, and neurodivergent educator in the United Kingdom who is the father of three neurodivergent children and has spoken with thousands of autistics over the last twenty years, both in a personal and professional context.He offers online learning about understanding autistic experiences for the public, as well as offering training for organizations. His course, The Inside of Autism, is a very popular course that parents from ICDL’s parent support group that I facilitate have attended and found extremely helpful.
Bonus InsightsDOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Wondering about being neurodivergentKieran was diagnosed at age 23 then the past made so much sense to him, as he explained in this podcast. I asked Kieran, “What makes someone think they need to get a late diagnosis? Why does it help?” and told him the story that Dr. Kathy Platzman shared in this podcast about how if everyone in your family has the same type of neurodivergence, you don’t realize it until you dine with a different family over the holidays. I told Kieran how I started to wonder about my own neurodivergence when I began reading tweets of self-advocates and realizing that I was just like them and did the same things they described as a child or in the present.I gave an example of how I tend to ruminate on all potential outcomes in a negative way, but that for me it is not about worrying. It’s rather just about feeling prepared in case they should happen. Kieran told me in the past that this is what neurodivergent people do and that it’s called ‘circumstance extrapolating’. Kieran says that we do it with positive things as well when we are happy and looking forward to something. You know you’re heading in to a certain situation so you extrapolate all the possible outcomes. It’s quite an autistic and ADHD thing to do, Kieran says.My whole life everyone has always said to me, “Stop overthinking!” or “Stop overanalyzing!” Kieran says that this must have come from previous experiences where I have thought about something and it turned out to be true, so it’s kind of a rational response. When it gets more extreme it can lead to rejection sensitivity. If you are neurodivergent, you’re processing a lot more information than other people around you, so you need to think about all the possible outcomes to sort it out. When you’re monotropic and focusing on certain things and your interest and attention is driving you, you need to think through the logical steps.Others, neurotypical folks, frame thinking like that as anxiety and overthinking, but it’s just my brain doing what it needs to do, Kieran explains. Calling it anxiety or overthinking is giving it a negative connotation, but you’re planning ahead. You’re looking for danger. You’re being hypervigilant, Kieran adds.Watch what you ‘feed’ your childWhat Kieran said to me stood out: that our past experiences fuel our current extrapolations. This means that what we do with our children feeds their experiences going forward. If we’re doing things that are invalidating who they are and make them feel like they’re a problem or that they have control over their behaviour, it’s feeding that experience, which is their trauma.Kieran agrees and adds that if you think about all of the people who have unhealthy attitudes about their bodies and think negatively about their bodies, usually that stems from people making comments or jokes about their weight. Individually, each comment doesn’t make much of a difference, but collected over time, they give us messages and become our own unconscious thoughts.Really, we’re talking about PTSD (Post Traumatic Stress Disorder) and cPTSD (Complex PTSD) on a minimal scale that cause reactions in us. When we have conversations about our children in front of them, our kids hear them–even when they’re not being derogatory about them.Why get an adult diagnosis?I asked Kieran how getting a diagnosis as an adult who didn’t have the same challenges as our children growing up, such as motor planning challenges and needing 1-on-1 support due to regulation issues at school, for instance, is helpful and what is the purpose of it? Kieran says that for many people, it is a validation. You don’t necessarily need the medical diagnosis. For some people, reading the experiences of adult autistics that resonate with you is enough to validate your past experiences, he shares. Kieran explains that for those who do get the formal diagnosis, it might be the first time in their life that they’ve been formally validated after a lifetime of being ignored or invalidated by others.It’s about wanting to be recognized and be seen, and giving yourself permission to not blame yourself for everything that’s gone wrong in your life. That’s not to say that you then blame the diagnosis for what’s gone wrong in our life, but it helps you–if you’re guided in the correct way–to reframe everything so that you recognize that not everything was your fault, Kieran explains. Other people have taken part in you having an unhappy life, or difficulty at home or work, etc. It can take a lot of guilt away from yourself, but there is a lot of stress in getting the diagnosis as well because it is quite a process.What a diagnosis does for youOn other levels, depending on your diagnosis, medication might be a route you can go down if you get diagnosed with ADHD, for example. The medication that you give people who are bipolar is effectively a bit of a tranquilizer to calm them, but for ADHD you need more of a stimulant to allow your brain to hyperfocus and be monotropic. There can be a stigma around medication, but there are many neurodivergences where medication can be an important tool.Another part of getting a late diagnosis is that some people struggle with self-identifying. Going and getting that medical diagnosis can be a way of saying, “This is my badge which gives me permission to talk to others with this badge.” You shouldn’t have to have that badge to discuss it, Kieran emphasizes, but some people need that. It allows for new connections.How can you compare an adult diagnosis to who our children are?What about a child who had other disabilities, I ask Kieran. How can we compare someone who is a parent, like me, for instance, to a child who struggles with many challenges and needs a lot of support. How can we both be called, ‘autistic’?Kieran says that your child is not just one thing. The children we’re talking about here have other diagnoses which they’re never given because they’re never looked at and shoved under these umbrella labels, so they’re not supported in the right ways because nobody goes looking for the things they need support for. They just call it ‘autism’.How can autistic adults help autistic children?Kieran says that an adult of his age can offer a parent of a young child many things including that he used to be that child, even if not exactly the same. They share a lot of what’s going on. Kieran can speak now, but people only see snapshots of him at a conference or training. Outside of that snapshot, they don’t see what Kieran struggles with and how he masks to get through situations that are an enormous drain on him.Regarding the example that I gave of a child struggling with motor planning, Kieran says that a dyspraxic person is a dyspraxic person whether they’re age 5 or 50, and there’s a reason why he doesn’t drive. This stuff doesn’t go away, but with scaffolding in place, these things don’t visibly has as much impact. Sometimes they are masked, and sometimes they are right in front of people but people don’t see them due to the lens they’re looking through. Due to what we’ve been told, having not been informed, and that people haven’t sat down with you and talked to you about this properly, we don’t see them, Kieran suggests.Getting the support you needIt’s good to identify the ways in which children need support, Kieran says. I encouraged people to go back and listen to the previous podcast with Kieran where we talked about functioning labels. In talking about Executive Function and ADHD as Kieran mentioned earlier, I suggested that if I am diagnosed with ADHD, for instance, I don’t think I would need medication, personally, but I do need supportive tools. I gave an example of how I will often start to cook something then get absorbed in something else and completely forget until I burn it by accident. So I set a timer in order to not forget. That is a supportive tool for me.Similarly, I set alarms on my calendar for everything so I don’t forget to pick up my child from school on time. I set events in my calendar so I don’t forget that I have a podcast recording scheduled, for instance. If not for these tools, these things could be a serious problem for me. Kieran says this brings us back to what we talked about in previous podcasts which is around disability. He said that I just described a disabled person who needs aids to do the things they need to do, even if I don’t see it that way. Both of us wear glasses. Without our glasses, we would be disabled, he explains.It comes back to disability not being a dirty word, Kieran suggests. He continues that there are others who might have the same problem as me but also forget to set their calendar, so they might need medication to remember to do so, which is an extra level of support. It’s a neurodivergent experience–an ADHD example–that I gave, he insists. Someone looking in from the outside might say that I don’t need a diagnosis to be able to set a calendar, but that’s one tiny snapshot of a lot of different things, Kieran explains, and he points out that I keep repeating that I never struggled growing up, yet I just gave an example of a struggle.I laughed and shared how I was always late for everything. Kieran says that the more I relate to other people’s experiences, the more memories like this will come back and I’ll realize that my childhood was not a neurotypical childhood and that I was not a neurotypical child who didn’t struggle. I was an ADHD or neurodivergent child who did struggle, but I had a supportive family around me who put things in place and had platforms and scaffolding around me and if any of those things were taken away–all of those things that neurodivergent children don’t need around them–my life would have been very different.I share that I had a very hypervigilant mother who constantly was on top of me asking if I had any homework, and what I had to do. We laughed that without that I may have been a sludge on the floor, as Kieran put it. I also mentioned that as I have aged, I have noticed I struggle with needing more supports. Perhaps it was after having a child with his own support needs and the added the stress of having to remember everything I need to do for him, on top of my own needs that overwhelmed me. Kieran concurs that the older we get, we get more tired and when you’re living a neurodivergent existence, you’re carrying around the accumulated trauma and workload of masking. All of this adds to our weight we carry.Kieran says that they used to say Executive Function was a core feature of Autism and ADHD, but he sees it as a symptom because it’s everywhere. Anyone who’s carrying stress experiences executive dysfunction. The more you meet your own needs as you age, the more control you’ll have, Kieran says. Kieran says that the bodies and brains of neurodivergent people burn out because we’re working so hard to sustain ourselves in a world where we’re surrounded by people whose needs are more met than ours.We don’t know anything about aging and neurodivergence, Kieran says. There’s a lot of conversations, focus, and research that need to be had around the anecdotal correlation between neurodivergence and dementia. Masking and burnout play a major role in that, Kieran believes.This week’s PRACTICE TIP:Have you noticed that your child has many of your traits? Perhaps you were a lot like your child when you were young? Use this to fuel your connection with your child!
For example: When your child’s behaviour might trigger you, step back and take a breath. Put yourself in your child’s shoes and try to remember being in a similar situation when you were a child in order to empathize with what your child is going through. Be there for your child in a compassionate, understanding way and let them know you felt that way, too, when you were young and you’re there to be with them and help them if they need help.
A huge thanks to Kieran Rose for sharing his knowledge and informed thoughts with us! I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Have a wonderful holiday season, and the podcast will be back in 2023.Until next time, here’s to choosing play and experiencing joy everyday!
The post Part 2: Adult Diagnosis and What it Means appeared first on We chose play, joy every day.
Part 1: To Whom Should Parents Listen?by Affect Autism
https://affectautism.com/wp-content/uploads/2022/12/2022-12-10.mp3This Week’s Topic
This week, in Part 1, Kieran Rose and I will discuss a number of topics around neurodiversity including who to listen to as parents when our child is diagnosed with so many opinions out there, and the balance between what we want as parents for our children and what our kids actually need. In Part 2 next week, we’ll discuss late diagnosis and what it means.
If you missed it, please check out our previous podcast which covered many topics including functioning labels and why they are not helpful, how people can be internalizers or externalizers, how Neurodivergence is in his infancy, Theory of Mind, and how context is so important when discussing anything.
This Week’s Guest
I’m pleased to welcome back autistic self-advocate, Kieran Rose, who is a published author, speaker, consultant, trainer, researcher, and neurodivergent educator in the United Kingdom who is the father of three neurodivergent children and has spoken with thousands of autistics over the last twenty years, both in a personal and professional context.
He offers online learning about understanding autistic experiences for the public, as well as offering training for organizations. His course, The Inside of Autism, is a very popular course that parents from ICDL’s parent support group that I facilitate have attended and found extremely helpful.
Kieran was also my guest on a two-part podcast last year with Dr. Virginia Spielmann where we discussed redefining the false autism narratives including many topics such as Kieran’s personal history and diagnosis, building on strengths, ableism, the social and medical models of disability, learning from autistic self-advocates, and much more.
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!There is No One Expert
With so many therapies available, what is the best course for parents? Who are the people offering these therapies? What do they know about autism? Kieran emphasizes that it comes back to context. There are many people out there who are just out there for your money, unfortunately. It’s difficult to advise parents who to listen to because everyone takes different things from different people. If we just think about autistic people for the moment, Kieran says, there are a number of self-advocates whom you can listen to. Kieran stresses that you need to think critically about whom you go to, about where you get your information from, and about what you take from people, too.
Kieran always says that he doesn’t want people to 100% agree with him. The work he does is informed by his professional career, his longstanding in the autistic community and the time he’s spent talking with other autistic people, from his own experience as an autistic person, and from his experience parenting autistic children, but he doesn’t know everything and doesn’t pretend to, he insists. He doesn’t like the word ‘expert’ because nobody knows everything about anything. So while he loves for people to listen to him, he doesn’t want people to agree with everything he says.
You can’t know everything because the autistic community is made up of millions of people, Kieran says. There is no one explanation of what autism is or what an autistic experience is. It’s about finding people with whom you relate, he offers. It’s about finding information that you find useful. It’s about finding people who are honest about what they know and don’t know. It’s about that critical thinking, he says. He sees a lot of autistic advocates who have a fan following as if they’re a celebrity. While Kieran has followers on social media because he is straight talking and knowledgable, it’s always about thinking critically and listening to multiple sources.
Kieran continues that you might listen to two different people say things that contradict each other and want to take what’s useful about what they both said and figure out what you can use and what you can disregard. It’s the same with therapies as well, he says. What’s useful and whose purpose does it serve, Kieran asks. We’ve discussed behavioural therapies and leading children and adults down a path of neuronormalcy, he continues, and insistence on doing things a certain way to fit in to society, when society isn’t that way and is supposed to be accepting. If you go to someone who is trying to change your child in some way to make it easier for them in the outside world, i.e., if we change your child in certain ways they’ll be accepted more, then they are saying that who your child is right now isn’t good enough, Kieran asserts.
Does your child need therapy?
Kieran says that especially in the United States when there is a diagnosis label, parents are told their children need many therapies, but they might not need any, he offers. They might just need a loving home where people are going to validate them, accept them for who they are, and encourage and enable them to be authentic, he suggests. So again, Kieran continues, it’s about thinking critically and not looking at people as experts, who might have some useful information but might not have useful information.
They might just need a loving home where people are going to validate them, accept them for who they are, and encourage and enable them to be authentic.
Kieran Rose, autistic self-advocateI pressed Kieran to elaborate on the topic of maybe not needing any therapy because so many parents–who may indeed be neurodivergent themselves–worry so much when their children don’t meet milestones and meltdown so much. They panic and go into ‘fixit’ mode. What does Kieran mean by ‘letting them be themselves’? Kieran says that one of his favourite books is the comedy science fiction novel, The Hitchhiker’s Guide to the Galaxy by Douglas Adams and on the front of the book are the words, “Don’t panic“. That needs to be drilled into every parent because you can’t predict the future, he insists. There are millions of autistic children in the world who didn’t speak as children who speak now as adults, he explains, and those who speak and communicate in other ways, whether it’s through AAC or sign language, etc.
Look at the Environment
Speech is not ‘the be all and end all’, Kieran states. It’s usually where the panic is for parents, along with meltdowns which are very visual, graphic, and distressing for not only the child, but also for the parents witnessing them. But that can change as well, Kieran offers, as children grow and learn to regulate–especially if you develop your understanding of what your child needs and help your child understand what they need as well. As they grow older, these things can dissipate as they get more control and autonomy over their lives and you recognize what distresses them and what doesn’t distress them, Kieran explains.
There is a wonderful lecturer in the UK named Dr. Luke Beardon who has a golden equation:
ENVIRONMENT + AUTISM = OUTCOME
See Dr. Beardon’s book Autism in Adults here.
Kieran explains that we tend to focus on our children so much and forget that they do not exist in a vacuum. We exclude everything that’s going on around them. Sometimes when we’re a bit more informed, we think about the sensory environment, but often we do that in a very superficial way, Kieran suggests. We think about sensory systems in isolation when in fact, everything is sensory. So when we start to understand things more, we can start to recognize the impact that the environment has on our children–and not just sensory or the room they’re in, Kieran warns. The environment includes the people in the room and the emotional signals and behaviours of the people in the room. Everything gives off electrical energy and we interact with it.
Autistic people tend to have much higher aroused nervous systems, so are processing more information, Kieran continues. If you imagine all the signalling and electrical energy around them, autistic people are often emotional sponges. It’s a lot to process and can be overwhelming to process the emotional energy of others on top of their own emotions which autistics also struggle to interpret. They become more informed about themselves as they get older and emotionally develop in order to handle all this stuff, and they rely on their family and the people around to make those environments as lowly arousing as possible to help navigate this stuff, Kieran says.
Get Informed
When we’re not informed and panicking, people around us are telling us our kids shouldn’t behave like that, and we’re getting pressure from professionals, the child is feeling and experiencing all of this pressure as well, Kieran cautions. From the moment our children are born, the are invalidated, and people often don’t believe sensory experiences. From birth, there’s people in your face, bright lights, and numerous distressing sounds if you’re born in a hospital. Nobody anticipates that you’re going to struggle to interpret it all, Kieran says. As you grow older, you learn to express what you experience differently and you’re invalidated, he continues. Then, those who are fortunate enough to speak are shown that they don’t communicate appropriately! All of this is stigma, pressure, and stress is being applied to children, Kieran stresses.
As parents, it’s ideal to be informed of all of this and put things in place to mitigate it all. It’s important to make sure our children are informed as possible as well, that their sensory environments are rich with the sensory information they need, and that their school systems don’t invalidate them, Kieran offers. When we’re not informed, we don’t realize that all of this is going on with our children and all we see is distress. What we see is trauma expressing itself through meltdowns, Kieran explains, but we’re told it’s behavioural stuff which causes us to panic even more. So we take our kids to people who teach them how to mask that behaviour, which is not really bad behaviour in the first place; it’s distress and trauma, Kieran expresses.
What we need to do is look for positive sources of information, Kieran says. Seek out what’s useful and forget about social conformity. We need to find our own path–what works for us–and stick to it, he asserts. I expressed that I hope that parents will really ask themselves, “Am I actually doing this?” because there are many parents who believe they are doing this but they’ll talk about therapies they’re doing and say things like, “they’re doing so much better now” right in front of their kids.
Parallel Play
I brought up that it’s tough for parents when our children do things like whip metal toy trains across the room. In the podcast I did with Dr. Virginia Spielmann about my son being a little scientist we discussed the type of play that my son was doing and while we want to give our kids the experience of being themselves, at the same time we don’t want our house destroyed. My basement has a zillion knicks in the wall from trains being thrown and scraped against it. Kieran explained that DIR/Floortime has the part of just getting down on the floor and playing with children, which is the most fun thing.
Kieran stressed that co-regulation is so important and said that it comes from doing what our kids do. If they’re a scientist, you are a scientist, too. Parallel play is the way that autistic children learn how to play, he emphasizes. They don’t learn by confronting other people and other people confronting them, Kieran explains. They learn by watching and observing, and by doing things while other people are doing them. They learn best, Kieran continues, and develop really strong relationships by having people sit down next to them and do their own thing while they’re playing. If they’re throwing the Thomas train, throw it with them.
Yes, you don’t want marks on your walls, but it’s just cosmetic. If it means that your child is going to grow up happy and mentally well, and develop in the way they need to develop, that means that you–as a parent–have done an amazing job, Kieran asserts. You brought a child into this world because you wanted them to grow up and be happy, but if you’re worried more about the cosmetics of your house than your child, it’s a problem. What else matters, he asks.
Setting Boundaries
Next, I asked Kieran that even if we are on board with letting our child play in non-conventional ways, what about grandparents or extended family who might not be ok with trains being thrown across the room at their place? Kieran replies that you need grandma and grandpa on board. He has met many grandparents who are incredibly supportive and often recognize their own narratives in their grandchildren. Some will never be on board, and maybe that’s when you have to consider boundaries. You have to think about strong boundaries with people if they are insisting you conform in certain ways, Kieran adds.
Other people’s social rules don’t apply to Kieran. He said it’s taken him a very long time to get to that place. And, he acknowledges that it comes with privilege when I bring up cultural traditions that make it difficult for some parents to set boundaries. From a privileged white background we have an element of choice and flexibility that other cultures may not have, Kieran acknowledges. For some, there is resistance if you don’t conform, he continues. If you come from a culture that’s subjugated by another culture, it’s more impactful to make the choices to set boundaries. It’s difficult because the problem is the culture.
The Parent Journey
With some cultures putting such an emphasis on academics, for instance, it becomes more of a journey for the parent. It can be a very hard pill to swallow for some parents that their child might not be at the top of the class or succeed at academics. It’s amazing the journey our kids bring us on, and in fact, sometimes I think that this process is really more of a journey for parents than for our kids. Kieran nods in agreement. Some parents find it a struggle to face the realities of raising an autistic child.
I told Kieran the story of the concierge at my old building after my son’s diagnosis and how much he loved my son and was such a natural Floortimer with him. One day I was agonizing about my son’s future, describing all of the therapies we were doing and not knowing if we’re on the correct path. He looked at me and said that anything can happen any day and I should look at that beautiful child in front of me who is just fine! It really stuck with me and I’m grateful to him for that message. We can get so overwhelmed with what we should be doing that we forget to just enjoy and appreciate the child we have.
Kieran’s youngest was really struggling in the school system so they were headed towards taking him out of school. Kieran hates the term ‘school refuser’ and prefers the term ‘school-induced trauma’. He was speaking with a friend who said that you have to make a decision that’s right for RIGHT NOW. There will be an impact of that decision down the line, but that’s a decision for a later version of you. You have to make a decision for right now. Kieran and his wife pulled their youngest out of school and he’s been the happiest he’s ever been being home for over two years, thankfully.
Sometimes we’re so embedded in what we see as a problem that we can’t see what’s in front of us and what’s most important for the person. Think about the right now rather than ‘what ifs’ of the future, Kieran advises.
Find the ‘Why’
What we as parents want for our children and what they need might not be the same thing. I gave an example about many parents who are really concerned about teaching their child more words. Once they hear a few words, they want to teach them sentences. Or the parent who really wants their child to sit at the dinner table with the family. I say that you can teach them words to memorize but they’ll learn to communicate by the parent playing and communicating with them and pairing words with action and affect (i.e., W-A-A). Kieran summarizes that parents want their child to fit into social norms. He says it’s less important to think about what’s important than to think about why something is important.
When Kieran digs deeper with parents about this desire, he’ll hear things like, “Well, that’s what I did” or “That’s what expected.” But why, he asks. Why is it imperative to your life that they sit down and eat their dinner? Why do you have to sit together? The more rules you put in place, Kieran states, the harder it is. The more autonomy you give, the more someone will follow the rules you have in place, he suggests. Kieran never enforced that rule to have everyone sit at the table.
Him and his wife interact with his children in places that aren’t the dinner table. The two oldest children now tend to join Kieran and his wife at the table but they didn’t when they were younger. The youngest rarely joins them but when they do, it’s a celebration and something to enjoy. Kieran has no fond memories at all about sitting at the table on a hard, uncomfortable chair. He does have great memories of sitting together in the living room with a buffet on Boxing Day and enjoying his family’s company.
When we have neurodivergent children, we have to rip up the rule book and that’s really difficult for some people to do. But no matter how difficult it is, we still have to do it because that’s what our children need, and that’s more important than what we want.
Kieran Rose, The Autism AdvocateMaking the Tough Decisions
Parents often ask about a holiday dinner at a relative’s house and everybody sits at the table except your child (same goes for birthday parties). I often want to ask in return, “What’s your question? How do I get my child to act like everyone else?” I tend not to take the judgment from extended family personally anymore because they literally do not understand what I go through. Kieran says there are various ways you can look at it. He’ll now address the elephant in the room and say, “Who wants to ask me a question about why my child isn’t sitting at this table?” and talk about it.
Here is a child with a disability and this is their disability presenting itself. We talk about this stuff as ‘invisible disabilities’ but they’re not invisible and this is a way it’s presented, Kieran explains. Kieran would also question what you are getting out of that relationship with your family if they already know after you’ve explained, yet are still acting that way? You may have to put boundaries down. There might be relatives who don’t accept the disability and think your child is just being naughty. Many autistic people have to come to terms with creating boundaries. Is it better to conform?
The opposite happens, too, I add, when everyone in the family is invited except for you and your child. Sometimes it’s not intentional negativity, Kieran suggests. It’s people who don’t know better. If they aren’t invited, they don’t have to feel obligated, and it saves them the stress, the person might be thinking. It comes down to communication, Kieran says. Boundaries and communication are things that families are really bad at. Kieran reminds us that we don’t bring up children, we bring up adults. We want our children to have boundaries and agency, authenticity, and autonomy. Everyone struggles with relationships and boundaries because we weren’t ever taught them, he continues. It’s us as parents that stop our children from growing up into that because we weren’t taught it.
This week’s PRACTICE TIP:This week let’s think about how we talk about our children in their presence.
For example: Are you using language like, “They’re doing so much better” or discussing their therapies with others in front of them? Let’s try to include our children in the conversation or if very young, at least not discuss what others might perceive as their challenges in front of them and instead focus on their strengths. Most importantly, let’s not panic and accept them for who they are and support their needs.
A huge thanks to Kieran Rose for sharing his knowledge and informed thoughts with us! I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Stay tuned for Part 2 next week where we’ll discuss adult diagnosis and what it means.
Until next time, here’s to choosing play and experiencing joy everyday!
The post Part 1: To Whom Should Parents Listen? appeared first on We chose play, joy every day.
What is DIR?What is Floortime?DIR GlossaryThe Process of Parenting our Neurodivergent Childrenby Affect Autism
https://affectautism.com/wp-content/uploads/2022/11/2022-11-26.mp3This Week’s Topic
This week we’re discussing the parenting process, the intersection of the parenting experience and Nicole Mank’s professional world, and how one shaped the other. Nicole discovered Engaging Autism when her son was seven which shaped how she parented her autistic child.
This Week’s GuestNicole Mank is a Licensed Marriage and Family Therapist and Certified Child Life Specialist in Davis, California where she is the parent of two neurodivergent young adults.
Bonus Insights
DOWNLOAD KEY TAKEAWAYSKey Takeaways PDF for MembersWe will never share your e-mail.
DownloadSuccess!Nicole’s Professional Roles
Nicole’s roles are serving children and families. As a family therapist, she works with children and their parents in private practice using the modality of play therapy to engage with her clients, and parent education is a big portion of how she supports families. As a Certified Child Life Specialist she was in a hospital setting at UC Davis Medical Centre, supporting the psychosocial needs of children and their parents in medical settings which involves working with a neurodivergent population. Since she has now left the hospital setting, she plans to share her knowledge with families and train hospital staff on working with this population as the systems that our families are in–education and the medical world–are a few steps behind.
Her Work is Shaped by Her Parenting Experience
Nicole is the mother of a 19- and a 17-year-old. She was a professional working with children and families prior to becoming a mother, and was quickly humbled by her parenting experience. She felt like she was supposed to know more about how to support her child who had very intense sensory experiences. She went on a search and because she had knowledge of child development, she could sense that something wasn’t right when her son had an almost panic response being around other babies and the sounds that they made. She reached out to her pediatrician and others and it was a very isolating experience to understand why it was so hard for him to be in the presence of others.
After a few years and contacting many professionals, Nicole discovered the sensory world and Occupational Therapy and found there still wasn’t enough information about how to potty-train her son and how to make the very loud world–as he describes it–bearable for him, including how to be in the same room as his younger sister who was on the other side of the sensory continuum to him. Nicole’s daughter came into this world loud and sensory seeking, opposite to her brother’s aversion of noise and touch. Nicole knew she wanted to attend a conference to get information because her Occupational Therapist was telling her that her son’s aversion to washing his hands was a control issue and this didn’t sit right with her. It didn’t fit. Something else was happening, but she didn’t understand it.
Nicole found the Sensory Processing Disorder clinic and Lucy Jane Miller and told her husband she was flying to their conference as it was the closest thing she’d found to describing what was going on with their child. He came with her and they felt like they found their people–those who could describe their child to them, without having met him! There were professionals there who could teach her how to help their son because their social world had shrunk. They had difficult experiences in preschool, going to the grocery store, or visiting other people’s homes. They decided to get him treated at the STAR Institute in Colorado for two summers and that’s where they learned about sensory processing. Autism was still not completely clear at that point.
The social world got very small for what he could tolerate.
Nicole Mank, Licensed Marriage and Family Therapist and Certified Child Life SpecialistEmbracing Neurodiversity
Nicole’s son received many different opinions from many professionals from Pervasive Developmental Disorder (PDD) to Not Otherwise Specified Disorder (NOSD). Her son’s verbal skills were very good and he had very engaging eye contact with adults, so an autism diagnosis came much later. But Nicole is trying to change her language around diagnosis to move away from the medical model of disorder and move towards embracing neurodiversity where brain wiring is just different.
It was at the STAR Institute where Nicole learned about the book Engaging Autism. The title scared Nicole. She had worked with autistic children prior to having her own, and it didn’t seem to fit with what she knew for her child. She had even done Lovaas behavioural training with an autistic child as an undergraduate intern. It didn’t fit for her. It didn’t fit how she wanted to engage with children.
Nicole’s child seemed to be confusing to professionals because of his ability to speak and engage with adults. The nuances of his profile were not well understood at the time. He had his diagnosis at age 5, but at the STAR Institute when he was 7, they were thinking that it was Sensory Processing Disorder (SPD) and at the time they were still hoping to get SPD into the Diagnostic and Statistical Manual (DSM).
It was about getting services when they got back home and in their child’s school. Embracing the term ‘autism’ came much later when he was more of a ‘tween’ when the gap of how he engaged with peers and how his peers engaged with peers was more pronounced and this brought more struggles. She thought this must be more than sensory processing.
Who cares what it’s called. It’s about accessing services.
Nicole Mank, Licensed Marriage and Family Therapist and Certified Child Life SpecialistAdvocating for your Children
During this time, so much of Nicole and her husband’s focus as parents was on their son due to his fear of the world and his anxiety. Their daughter’s adaptability made it easy to just move along. She was in a play-based, parent co-op preschool that was child-led and engaging, so they kept her in for an extra year since she was thriving. The preschool had a big, open yard, so she spent all of her time running, riding bikes, and spinning on a tire swing, getting all of the input she needed.
Nicole knew that Kindergarden would be tough having to sit in circle time and attend to the group. The challenges with her were more school-based because of her anxious response and her sensory profile. She presented more how the gendered view of little boys is: not wanting to sit still and needing to move their bodies, but she was pretty compliant so she wasn’t disruptive.
Nicole’s daughter moved along until about 5th grade where Nicole knew her child needed more support. Nicole proposed that she had ADHD (like her father) and it was accurate. It became a full-time job and her professional work world became secondary. She ran into many blockades despite having done the research and supporting her children, so it drove her current professional life.
When Nicole’s son was diagnosed, all they could do was give her the number to their regional centre and a photocopy of resources that she might seek out and to say that she could let her child’s school know about them (even though he had gastrointestinal (G.I.) issues and anxiety that were not being recognized in the medical world, struggles that neurodivergent kids have). Then, the school was saying he wasn’t disruptive, so his behaviour wasn’t warranting much attention.
Nicole had to advocate strongly for the fact that engagement is part of education and that her son was challenged on how to engage. Elementary school curriculum was easy for him. His challenges were engagement and sensory issues, including the numerous drills they would have at school that are so noisy. She had sat at the IEP meetings as a school councillor before becoming a parent so she knew that process, and her husband was a teacher and knew that process, so they were shocked when they weren’t met with open arms or a collaborative spirit.
If I have foundational knowledge, and I’m hitting walls after walls, this is not a fair system.
Nicole Mank, Licensed Marriage and Family Therapist and Certified Child Life SpecialistNicole and her husband really had to push, advocate, and educate. She had to go to the district level to ask what can be done for parents who are exhausted on even any given day, and don’t have the reserves or the financial capacities to hire attorneys because they’re all paying privately for Occupational Therapy and other services. They were met with blank stares as well. They were offered aids on the playground, or that their child could just come sit in the office during recess. That was not an appropriate accommodation but that was what was being suggested, Nicole continues.
As a parent, Nicole figured that he wasn’t the only child struggling so she volunteered twice a week for a few hours at the school, trying to fill in the holes in the systems that were lacking in understanding and resources. The systems still have a long ways to go, she asserts. They weren’t getting the help they needed through their medical insurance model and so they chose to get their services privately. The team at the STAR Institute showed them how to support their child and Nicole wanted to bring that back to her community, so she started an SPD (sensory processing disorder) parent connection group and helped facilitate that for a couple of years.
Adolescence became another time when Nicole had to stop working again with the demands of parenting her children and a need for advocacy. She had heard the quote that parenting is the perpetual state of letting go with each stage of development. It’s hard when you’re in the role of being the co-regulating parent. We take more of a primary role than other parents have to with their children in helping the sensory system feel safe. When our kids start to separate and individuate, which is developmentally appropriate, it looks and feels different than it does in neurotypical kids, Nicole says.
When you’ve been co-regulating to make the world tolerable for your child, many professionals don’t understand how development looks different for our kids.
Nicole Mank, Licensed Marriage and Family Therapist and Certified Child Life SpecialistMentoring the Next Generation of Parents
I share with Nicole that her and I bring with us this experience and empathy that we can relate with other parents in our professional roles, even though our experiences are all different. I shared how I can struggle going back to an earlier stage I went through with my child without wanting to provide solutions to parents in the parent support meetings I facilitate. I forget that it took me a long time to get used to all they’re going through. Nicole says that in her training, accepting people where they’re at has helped her.
Nicole continues that her parenting experience of complete compassion for the challenges that neurodivergent kids experience for themselves, and the impact on the whole family, and the amount of compassion she feels for the process, makes her realize how important it is to extend as much grace as possible because she, too, rejected the label of autism due to getting mixed messages of what that label meant. She also teaches undergraduate Family Studies at Sacramento State University. One of her leading points is to suspend judgment on parents who are doing the best with what they know at the time.
DIR Model Supports Families
Nicole asks herself how she can use her skill set and background to support the next generation of parents coming up. She would have loved to have those people living ahead of her more than she had. That’s why she reconnected with The Interdisciplinary Council on Development and Learning (ICDL), thinking about Floortime because she’d like to get trained in Floortime to offer it in private practice as a Family Therapist because she believes that parents are the key to supporting their kids.
She has more capacity right now to share with others, so she took my BE S.U.R.E. course from ICDL where she learned about more resources that weren’t available on her journey. There’s so much information out there, it’s overwhelming, she states. She needs to weigh what the professionals say with what her gut says as well. Then she needs to see what her partner thinks about it, then decide what they want to support as a family and how their child will interact with it. It requires a lot of patience and sensitivity to the process and there’s no one right way despite how much we all want to have the prescriptive instructions to follow.
Listening to the Voices of Autistic Adults
Next, Nicole talked about how she found out how important it was to listen to the community of autistic adults. She really sought out support when she was struggling with how to parent an adolescent from this community because she realized she viewed the world so differently from them. She wanted to know how to co-regulate an adolescent when she didn’t necessarily need to co-regulate.
I asked Nicole if there were certain places she went to, seeking the voices of self-advocates? I’ve had Kieran Rose on the podcast whose work I’ve personally found extremely helpful. Nicole found self-advocates on Instagram using the hashtag #NothingAboutUsWithoutUs after her child wanted to be on Instagram. She reached out to a few who offered to support parents and had phone conversations with them.
Parenting an Autistic Young Adult
She also found the AANE (Asberger Autism Network) on the east coast which has a coaching program that she’s encouraging her young adult to consider taking. One piece of advice a parent at the STAR Institute gave her was that once a child reaches a certain age, your level of influence as a parent drops drastically. It’s so hard as a Mom, Nicole says. She just can’t sign him up for something. He has to want to do it. I stated a disclaimer that Nicole doesn’t mean she should run the show for her child and drag him to any appointments she thinks he should have!
Nicole and her son have had conversations about autism. He felt he learned about it too late and rejected it because his understanding of it was that it was someone with higher support needs than he had. He wants to be like his peers. How do you balance and support that, too, Nicole wonders. For one of her children, it’s easier to advocate than it is for the other. Nicole is trying to boost the child who struggles with it. For Nicole, it was also a huge adjustment as a parent to lose the line of communication of talking to her son’s providers, without his permission.
The process, emotionally, as a parent of having to let go needs more attention, Nicole believes. It’s hard for parents to step back and do a step-back consultation. I add that we’re so worried about our children that sometimes we control every aspect of their lives because we feel like we have to to protect them. We do our best to take good care of them and do so much for them but as they grow, we want to promote independence and agency. We need to learn how to do that.
And we need support to do that, as parents, Nicole says. For her, when she struggled at home she used the DIR Model to remember that at all costs, maintain the Relationship. That pushing and pulling that happens in adolescence is more pronounced with a neurodivergent child. At the end of the day, Nicole wants to have a connection with her children. It’s a constant practice, she admits.
Normalizing Neurodiversity
We’re hearing more and more about neurodiversity, I continue, but it’s not mainstream yet despite Steve Silberman’s Neurotribes in 2016. There are also now more and more neurodiveristy-affirming, autistic-led facilities opening up offering supports and treatments for autistic children and young adults. Nicole does trainings with child care staff including HeadStart and Crisis Nursery and she asks if they’ve heard the term and mostly it’s ‘no’. It’s a paradigm shift that can help make our world better, Nicole says, if we have an appreciation for how brains are wired differently. There’s no right or wrong. There is momentum now with the neurodiversity movement, she adds.
Conformity is not the answer, but connection is the most important piece.
Nicole Mank, Licensed Marriage and Family Therapist and Certified Child Life SpecialistThe medical community doesn’t embrace neurodiversity, Nicole says. A lot of the research grants getting funded are medical model based, looking for genes and medication, missing the social support, accommodation, and remediation pieces such as Occupational Therapy services for motor planning challenges, or sound therapy for auditory processing. There are so many supports we can put in place that are neurodiversity affirming to support the disabling aspects of autism, Nicole adds.
Even the Center for Disease Control in the USA just published revised milestones from age 0 to 5 years, Nicole says, and she sat in on a call with someone who was still speaking about a cure for autism. Nicole mentioned to those on the call, “What about the idea of neurodiversity and supporting families with this belief system that is different than the medical model of diagnosis/cure?” So, as parents we’re still having to constantly figure out where do we stand, how do we support our child and how do we empower them, Nicole adds.
Nicole’s kids hate the word ‘disorder’. How do we be mindful of language? Nicole says she still catches herself. I acknowledged that, too, and offered heartfelt apologies to listeners if even in this podcast Nicole or I said anything that made listeners cringe. We are still parents learning ourselves, and the last thing we want to do is say things that offend anybody. Nicole says that she really likes the idea of having compassion for parents who are trying to do the right thing. That’s why she really wants professionals to stand up and take responsibility for the role they play in influencing parents.
Parents look to professionals for the answers when we are lost. So many professionals aren’t taking that responsibility and listening to advocates or learning what they need to learn to be more current, whether it be nurses, pediatricians, mental health professionals, or others, Nicole explains. There’s a shift happening, and it’s an important one, and it’s neurodiversity affirming (which is always the better way to go, Nicole states). Nicole is always reminded of how far we have to go when she interacts with professionals who still say, “I’m so sorry” instead of looking at the gifts and differences and looking at the complexity of humanity, which parents so desperately need, Nicole stresses.
Some parents and Nicole are starting a neurodiversity network for parents whose kids are past high school and need a new kind of support for one another. One thing they discuss is how it would be so great if parents could be given the permission to delight in their child after learning that they are neurodivergent. It’s hard when we’re constantly looking for what we can do to help, Nicole explains, and the media is very strong in how that is shaped. It can and needs to be so much better, Nicole states.
What about ABA?
I asked Nicole if her family had experience with ABA (Applied Behaviour Analysis), given that she was a behaviour aid before having children and is now a relationship-based professional. Nicole says that they never did ABA. It was never something she considered with her focus on Relationship. Her family saw Occupational Therapists at the STAR Institute and psychologists who worked on emotional aspects of development. These professionals helped guide how her family proceeded.
It was the early 2000s, and ABA was not the billion-dollar industry that it is now, Nicole explains. It concerns her that ABA is mostly what parents are hearing about today in that it’s not for everyone. She hopes that DIR/Floortime gains more traction in the insurance world and medical community. I took this as the perfect opportunity to point listeners to the DIR Coalition of California which advocates for DIR/Floortime at the state level.
This week’s PRACTICE TIP:This week let’s have compassion for our own journey as parents and reflect on how we can maintain the relationship with our neurodivergent children.
For example: Find moments of joy every day to share playful experiences with your child, focusing on the relationship.
Thank you to Nicole Mank for sharing her experiences of her parenting and professional journey with us. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.
Until next time, here’s to choosing play and experiencing joy everyday!
The post The Process of Parenting our Neurodivergent Children appeared first on We chose play, joy every day.
The post Part 2: Bridging the Gap in Understanding appeared first on We chose play, joy every day.
The post Part 1: Taking that Step on the Red Carpet appeared first on We chose play, joy every day.
The post The Complexity of Vision and Visual Processing appeared first on We chose play, joy every day.
The post Kinder Growth DIR/Floortime Medicaid Services appeared first on We chose play, joy every day.
The post The INAS 2022 Neurodiversity Conference appeared first on We chose play, joy every day.
The post The Impact of Vestibular Processing on Development appeared first on We chose play, joy every day.
The post Good Intentions Creating Unseen Stigma appeared first on We chose play, joy every day.
The post Parents can Connect with their Children Through Musical Interactions appeared first on We chose play, joy every day.
The post Your Growth is your Child’s Growth: Strength in Relationships appeared first on We chose play, joy every day.
The post The World’s First International Concert to Celebrate Neurodiversity appeared first on We chose play, joy every day.
The post Gauging our Developmental Capacities: Part 2 appeared first on We chose play, joy every day.
The post Gauging our Developmental Capacities: Part 1 appeared first on We chose play, joy every day.
The post DIR/Floortime and Physical Therapy appeared first on We chose play, joy every day.
The post Creating Opportunities for Co-Regulatory Support appeared first on We chose play, joy every day.
The post Access and Choice in NY State for Autism Supports and Services appeared first on We chose play, joy every day.
The post A Developmental Approach to Toileting: Part 2 appeared first on We chose play, joy every day.
The post A Developmental Approach to Toileting: Part 1 appeared first on We chose play, joy every day.
The post Gross Motor versus Fine Motor Functions appeared first on We chose play, joy every day.
The post The Impact of Cognitive Load on Relating, Communicating, and Thinking appeared first on We chose play, joy every day.
The post The Rubber Band Metaphor in Floortime appeared first on We chose play, joy every day.
The post Sensorimotor Profiles in Floortime appeared first on We chose play, joy every day.
The post Identity Exploration and Finding Your Voice appeared first on We chose play, joy every day.
The post The New Co-Reg Community appeared first on We chose play, joy every day.
The post Critical Core: A Tabletop Role-Playing Game appeared first on We chose play, joy every day.
The post KultureCity: Sensory Accessibility and Inclusion appeared first on We chose play, joy every day.
The post ‘DIR’ Child & Family Counselling appeared first on We chose play, joy every day.
The post Creative Arts Through Music and Drama appeared first on We chose play, joy every day.
The post Constrictions in Developmental Capacities appeared first on We chose play, joy every day.
The post Redefining the Autism Narrative: Part 2 appeared first on We chose play, joy every day.
The post Redefining the Autism Narrative: Part 1 appeared first on We chose play, joy every day.
The post Virtual Floortime Coaching for Parents appeared first on We chose play, joy every day.
The post A Parent’s Experience of DIR/Floortime appeared first on We chose play, joy every day.
The post Am I Neurodivergent Like My Child? appeared first on We chose play, joy every day.
The post Creating Opportunities in Floortime appeared first on We chose play, joy every day.
The post Words-Action-Affect (W-A-A) in Floortime appeared first on We chose play, joy every day.
The post Examining the Experience of Autistic Students in Higher Education appeared first on We chose play, joy every day.
The post Alternative and Augmentative Communication (AAC) Devices appeared first on We chose play, joy every day.
The post The Power of Purposeful Communication appeared first on We chose play, joy every day.
The post Enriching Sensory and Motor Experiences at Home appeared first on We chose play, joy every day.
The post Sensory Ingredients and Dynamic Responsivity appeared first on We chose play, joy every day.
The post Floortime is also Adolescent- and Adult-Led appeared first on We chose play, joy every day.
The post Affect Depends on Interoception appeared first on We chose play, joy every day.
The post Fostering Friendships Virtually Using Games appeared first on We chose play, joy every day.
The post Approaching Pre-Academics with Floortime appeared first on We chose play, joy every day.
The post Combining DIR/Floortime and Sensory Integration appeared first on We chose play, joy every day.
The post Co-regulation is the Driver for Sensory Integration appeared first on We chose play, joy every day.
The post Emotion seeking and saying “No!” appeared first on We chose play, joy every day.
The post Supporting Parents in the Process of Accepting Reality appeared first on We chose play, joy every day.
The post A Self-Advocate’s Inspiring Journey appeared first on We chose play, joy every day.
The post Good Autism Education is just Good Education appeared first on We chose play, joy every day.
The post Building Relationships in the Practice of Palliative Care using DIR/Floortime appeared first on We chose play, joy every day.
The post The Heart of DIR/Floortime: The ‘R’ and Genuine Affect appeared first on We chose play, joy every day.
The post Facilitating Emotional and Logical Thinking: Part 3 appeared first on We chose play, joy every day.
The post Facilitating Emotional and Logical Thinking: Part 2 appeared first on We chose play, joy every day.
The post Facilitating Emotional and Logical Thinking: Part 1 appeared first on We chose play, joy every day.
The post Recognizing and documenting our children’s communication cues appeared first on We chose play, joy every day.
The post How do we best prepare our multidisciplinary professionals in the field of autism? appeared first on We chose play, joy every day.
The post My Biggest Revelations from being a Floortime Parent: Part 2 appeared first on We chose play, joy every day.
The post My Biggest Revelations from being a Floortime Parent: Part 1 appeared first on We chose play, joy every day.
The post Support for Fathers of Children on the Spectrum appeared first on We chose play, joy every day.
The post The Future is Here: Fostering Neurodiverse Students’ Media Literacy appeared first on We chose play, joy every day.
The post Art with Heart: An Open Studio Approach to DIR/Floortime appeared first on We chose play, joy every day.
The post Navigating our therapy teams and social circles appeared first on We chose play, joy every day.
The post Supporting Parents in DIR/Floortime appeared first on We chose play, joy every day.
The post Research Supporting DIR/Floortime appeared first on We chose play, joy every day.
The post Floortime in the Pool: A Deeper Dive appeared first on We chose play, joy every day.
The post Individual differences and Floortime in the Pool appeared first on We chose play, joy every day.
The post Attention and Executive Function appeared first on We chose play, joy every day.
The post Interoception: What is your child feeling inside? appeared first on We chose play, joy every day.
The post Online Schooling and Services during a Pandemic appeared first on We chose play, joy every day.
The post What to Expect from a Developmentally-Based Speech and Language Pathologist appeared first on We chose play, joy every day.
The post Polyvagal Theory and Regulating our Bodily State appeared first on We chose play, joy every day.
The post Pre-Linguistics are Pre-Social Abilities appeared first on We chose play, joy every day.
The post Strategies Don’t Support Growth appeared first on We chose play, joy every day.
The post Promoting Symbolic Thinking in Small Group Settings appeared first on We chose play, joy every day.
The post From Ambiguous Loss to Acceptance appeared first on We chose play, joy every day.
The post Incorporating DIR Goals into the Individual Education Plan (IEP) appeared first on We chose play, joy every day.
The post Regulation Challenges through the Developmental Capacities appeared first on We chose play, joy every day.
The post The Importance of Preverbal Affective Signalling appeared first on We chose play, joy every day.
The post Floortime with Family and Small Groups appeared first on We chose play, joy every day.
The post The Move Towards Developmental Approaches appeared first on We chose play, joy every day.
The post FOODTIME: A developmental approach to picky and rigid eating appeared first on We chose play, joy every day.
The post Sensory and Developmental Poetry Workshops appeared first on We chose play, joy every day.
The post A review of Developmental Social Pragmatic interventions appeared first on We chose play, joy every day.
The post Remediation versus Accommodation appeared first on We chose play, joy every day.
The post Dirty Hands Developmental Alliance appeared first on We chose play, joy every day.
The post Supporting the Development of Self-Regulation appeared first on We chose play, joy every day.
The post Theory of Mind is Developmental appeared first on We chose play, joy every day.
The post Self-Regulation Starts With Us appeared first on We chose play, joy every day.
The post Affect is your #1 resource to connect with your child appeared first on We chose play, joy every day.
The post Circles of communication in Floortime appeared first on We chose play, joy every day.
The post Why ‘challenging’ and ‘expanding’ are essential for human growth appeared first on We chose play, joy every day.
The post Early Social-Emotional Capacities appeared first on We chose play, joy every day.
The post Floortime through Music Therapy appeared first on We chose play, joy every day.
The post The Little Scientist: Progression of cause-and-effect play appeared first on We chose play, joy every day.
The post Can visual prompts about time promote understanding in Floortime? appeared first on We chose play, joy every day.
The post Avoiding the blame in Floortime appeared first on We chose play, joy every day.
The post Maude Le Roux’s new Functional Developmental Autism Assessment Protocol appeared first on We chose play, joy every day.
The post Promoting Capacities 4 and 5 with Floortime appeared first on We chose play, joy every day.
The post How a caregiver’s regulation affects the child’s regulation appeared first on We chose play, joy every day.
The post Repetition in autism therapy: A closer look appeared first on We chose play, joy every day.
The post Facilitating process-oriented learning with developmental level in mind: the just-right challenge appeared first on We chose play, joy every day.
The post Process-oriented learning inspires relating, communicating, and thinking appeared first on We chose play, joy every day.
The post Applying the DIR Model in a Public School appeared first on We chose play, joy every day.
The post Threshold Community Program: DIR for adolescents and young adults appeared first on We chose play, joy every day.
The post The Rebecca School: Relationships are the Foundation of Learning appeared first on We chose play, joy every day.
The post Foundation Academics: What is it? appeared first on We chose play, joy every day.
The post Developmental growth spurts: What to expect appeared first on We chose play, joy every day.
The post A Developmental Approach Overview appeared first on We chose play, joy every day.
The post The Building Blocks of Motor Planning appeared first on We chose play, joy every day.
The post Moving Up and Down the Developmental Ladder appeared first on We chose play, joy every day.
The post DIR/Floortime as a comprehensive developmental approach appeared first on We chose play, joy every day.
The post A User’s Guide to the Developmental, Individual differences, Relationship-based (DIR) Model appeared first on We chose play, joy every day.
The post Starting DIR/Floortime with your child: Where is your child developmentally? appeared first on We chose play, joy every day.
The post Starting DIR/Floortime with your child: Step 1 is the sensory processing profile appeared first on We chose play, joy every day.
The post Floortime as a Family Approach appeared first on We chose play, joy every day.
The post The ‘R’ in the DIR model: Relationship-based appeared first on We chose play, joy every day.
The post The ‘I’ in the DIR Model: Individual Differences appeared first on We chose play, joy every day.
The post The ‘D’ in the DIR Model: Development appeared first on We chose play, joy every day.