Embracing Holland: Recent Episodes
Angie Auldridge and Megan Barrett
A podcast about traveling the special needs road and discovering the hidden gems and unique finds of a place you didn't think you would be. We share how families are doing amazing things as a result of a diagnosis, and give you a glimpse into the realities of raising children with differing needs.
Christina Adams, journalist, writer, disability advocate, and camel milk investigator, shares with us her powerful early intervention story of her son with autism and how she was able to help him through diet and camels. She outlines what she calls her “crazy camel journey” and how her research and travels to Isreal took her to a place of healing. She shares her website with us as a resource that details how camel’s milk can help several conditions, from allergies and gut issues to neurodevelopmental issues. Join us as we learn about the amazing qualities of camels and how their milk can be a part of your healing journey!
Join us as we talk to Hannah Lowe, founder of the L-CMD Foundation and mother to Austin, who has LMNA-related congenital muscular dystrophy. Like many rare disease families we've talked to, her son's condition was caused by a random genetic mutation. There is no treatment or cure, and given how rare it is, they are unsure about his prognosis or life expectancy, making the mission even more urgent. The L-CMD Foundation she started inspires hope for a stronger tomorrow by seeking treatments and, ultimately, a cure. We talk about balancing grief with action, and Hannah exemplifies this in her graceful and determined approach to saving her son.
If you’ve ever worried about what adulthood might look like after high school or you’ve ever been inspired to create a meaningful space for your child to spend adulthood, tune in to our interview with critically acclaimed author, Cammie McGovern.
Cammie McGovern was awarded a creative writing fellowship at Stanford University, and has received numerous prizes for her short fiction. Her stories have appeared in many magazines including Glamour, Ladies Home Journal, Redbook and Seventeen , and she is the author of another novel, The Art of Seeing. She lives in Amherst, Massachusetts with her husband and three children, the eldest of whom is autistic. She is one of the founders of Whole Children, a resource center that runs after-school classes and programs for children with special needs.
This week we chat with Leylani Cardoso, warrior parent, and mother of Sophia, her daughter with Down Syndrome. Leylani and her family helped Sophia bring her passion for food and entertaining to life by creating the YouTube Channel Cheeky Sassy Me
For this episode, we share with you another Maryland parent and fellow autism mom, Lia McCabe, who started AutismWish.org which seeks to fulfill the wish lists of families across the country without all of the red tape of government programs. She and her husband also host a podcast called Embracing Autism, which is child focus and helps parents to understand and embrace their neurodiverse children. Give it a listen, follow, and subscribe to support their mission of helping families in the face of fear and the unknown.
We talk about:
Neurodivergent parenting
Empathizing with sensory needs
The formation of Autism Wish and the Embracing Autism Podcast
Accepting behaviors that are harmless
How IQ testing is not designed for children who are non-verbal
Maintaining a positive perspective
Growing to understand that a diagnosis doesn't mean future dreams are gone
Lia’s website
Autism Wish
Autism Wish Facebook Page
Lia’s Recommended Books
More Than Words: A Parents Guide to Building Interaction and Language Skills for Children with Autism Spectrum Disorder or Social Communication Difficulties by Fern Sussman
The Reason I Jump by Naoki Higashida
Other books mentioned
Autism Breakthrough by Raun K. Kaufman
An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate and Learn by Sally Rogers
This episode is all about taking care of the caregiver. Rory Lawrence, mother of a child with complex medical needs and staff member with David’s Refuge, talks with us about the organization she works for that pours into parents turned caregivers, and how she and her husband have found meaningful respite. We also talk about practical ways to weave in self-care that don’t require a sitter but can actually make a difference.
Links
Sensory Pathway Booklet
The Intentional Family: Simple Rituals to Strengthen Family Ties
Mae Bae Fan Club - Unique Apparel for Special Kids and Those Who Care for Them
David's Refuge
Rory’s Email - rorylawrence@davidsrefuge.org
David's Refuge Private Facebook Page
Despite ending the year on a turbulent note for our families, we are ending season two of the podcast with our awesome finds that brought us joy this year! We share with you gift ideas, sanity savers and problem solvers that we hope will bring a little joy and make your life a tad easier.
Best wishes for a healthy, uneventful holiday season free from meltdowns and a bright new year sans trips to the ER and calls from your child’s school!
XO XO
Angie & Meg
NillyNoggin Caps - To Improve the EEG Experience
Compression Sheet
Buzzy Personal Vibrating Ice Pack for painless injections
Therapy Sensory Silk Swing
Hand Tally Counter - Best Fidget Ever!
Movement Sensory Sox
Aromatherapy Essential Oil Diffuser Necklace
Hex Lights
Curtain String Lights
Floor Lamp
Plant Therapy Kid Safe Oils - Tummy All Better
Migraine Stick
Sonic Bomb Alarm Clock and Bed Shaker
The Libby App - listen to books for free!
Books Angie loved this year
Beach Read by Emily Henry
People We Meet on Vacation by Emily Henry
Giver of Stars by Jojo Moyes
The Midnight Library by Matt Haig
The Body: A Guide for Occupants by Bill Bryson
Malibu Rising by Taylor Jenkins Reid
Books Angie didn’t love, but a lot of other people did, so you might!
The Grace Year by Kim Liggett
Untamed by Glennon Doyle
90 degree Lightning Cable
90 degree USB Type C Cable
90 degree Micro USB Cable
And if you can only read one book, read this one - Underestimated - An Autism Miracle by J.B Handley and Jamison Handley
In case you’re interested, here’s more info on Spelling to Communicate
Chore Slap Bracelets
Family Devotional - Angie’s weekly ritual and current version of Sunday worship
Foundations - 12 Biblical Truths to Shape a Family
Zenni Optical Affordable Glasses
Hatch Baby Rest Sound Machine - Not the Nest - that's an entirely different device we also love
Microwave Omelet Maker
Microwave Egg Poacher
Microwave Cookware Set
Olive and June - The Winter Collection
YUMILashes Keratin Lash Lift
TUSHY Classic Bidet
Sleep Training Clock
Gel Nail Polish Set
Bidet
Have you ever seen the meme about a special needs parent who fell in a hole? Well, that's where Meg and I find ourselves. When we started this podcast journey our mission was to highlight families with disabilities doing innovative things but to also share the reality of the ups and downs of raising children with disabilities, so this episode is a life update and a peek into where we are in the metaphorical Holland. We hope this brings someone some comfort who may also be in a hole.
We continued our chat about smearing with our guest, Jennifer Sheppard, who created an adaptive clothing line out of a dire need for an alternative to wet suits for her own son who struggles with the behavior. We also shared a bit more of our chat with Genevieve, and our own lessons learned from dealing with poo.
We talk about:
- How we've become desensitized
- What we've found to be helpful in the aftermath
- Ways to clean up the mess
- Specific products and strategies that have been helpful
- Finding adaptive clothing solutions for when you can’t watch your child 24/7
Jennifer’s Adaptive Clothing Line - The Wild End of the Spectrum
Life on the Wilder End of the Spectrum
FB page - The Wilder End of the Spectrum
Products We Reference (not sponsored or affiliate links, just products we’ve purchased and found helpful)
Ruggable - Washable Rugs
Clorox Healthcare Hydrogen Peroxide Cleaners
Bissell Pro Heat Pet Carpet Cleaner
Book
What to Do about Smearing
Fecal smearing and ingesting are taboo topics that often elicit a considerable amount of shame for families. We felt like it was time to give this topic some attention to those who are struggling in the dark and aren't comfortable reaching out for suggestions in the online support groups. In response to very little information openly available to families struggling with smearing and consuming feces (scatolia and coprophagia), Genevieve Engleman, The Remote OT, shares with us the background behind the behavior, information to reduce the stigma, and ways we can try to prevent and address this issue.
We talk about:
- Why mammals may consume their own feces
- History and incidence of these behaviors
- Reducing the stigma and shame associated
- What the behavior may be communicating
- How to address any potential medical problems that could lead to these behaviors
- What do do if and when it happens
- Ways to use OT, and sensory play to meet the needs currently served by poop play
Genevieve’s Website
The Remote OT
This week we chat with Joya Van Der Laan, a functional medicine family nurse practitioner whose curiosity and her own daughter’s autism diagnosis lead her down the biomedical path. We learn how she has used her personal and professional experience to create videos to teach parents how to create their own autism game plan, focused on helping parents address common symptoms and challenges associated with an autism diagnosis. Her videos cover everything from sleep, meltdowns, constipation and seizures to PANS and PANDAS. Tune in to learn about Joya and how her website could help your family!
We talk about:
- How overwhelming it was to face an autism diagnosis even as a medical professional
- Feeling the pressure to “fix” her child
- Using functional medicine to find the root cause of symptoms
- Deciphering between “voodoo” and science
- Creating a resource to quell the overwhelm and ease the burden on parents
- Testing to determine deficiencies and starting with basics like diet
- The importance of sleep for everyone!
- Healing is an artform not an end game
- Watching other children improve while her daughter struggled which led to learning
- How the desperation to help our kids can sometimes cloud our judgement with interventions
- Being methodical with trying new things to determine what’s working and what’s not
- How functional medicine can help parents too!
Joya’s Website
Your Autism Game Plan
Books
How to End the Autism Epidemic
The Explosive Child
The Autism Revolution
Healing the New Childhood Epidemics - Autism, ADHD, Asthma and Allergies
Nutrient Power
Doctors to follow
Dr. Mark Hyman
Dr. Jeffrey Bland
For this episode we speak with Megan Martin, personal trainer, health coach and purveyor of holistic wellness who used lessons learned from her own health journey to help her son with autism. She shares with us what the biomedical approach means and how she used it to address her son’s symptoms, including how she did an at home fecal transplant.
We talk about:
- Personal illness and disease that led to path of holistic healing
- Exploring functional medicine
- Lifestyle factors and diet being the foundation for disease prevention and treatment
- Supporting the entire body to help with brain function
- Addressing GI dysfunction as not just another symptom of autism
- Using diet to address autism symptoms, including eczema
- Naturopathic doctors and what they do
- All about fecal microbiota transplants (currently only FDA approved for C-Diff but many clinical trials in patients with autism)
- Using the AMD Ion Cleanse foot bath for detox and she get her son to sit still
- Other alternative treatments to try
Links
Autism Research Institute - Gi webinar
Arizona State University Uses Bacteria to Improve Autism Symptoms
Stanford University - Microbiome studies
AMD - Ion Cleanse
The Autism Community in Action
Recovering Kids Facebook Group
Detoxing Kids - A Parent Guide to Safe Metal Detox
Autism Effective Biomedical Treatments: Have We Done Everything We Can?
ATEC - Autism Treatment Evaluation Checklist
Personalized Vitamins and Minerals
Does the thought of traveling with your children and family members with disabilities and complex medical needs intimidate you and make you shy away from leaving the house? This is the episode for you! Join our friend of the show and fellow complex medical needs mom Kristy Kargel, as we chat about how to navigate airports, long trips, and making it from point A to point B without excessive stress.
We talk about:
- Finding accessible changing facilities
- Bringing medically necessary items as carry-on items
- Calling the airline two weeks prior to discuss specific travel needs
- Renting a modified van
- Writing into a waiver plan to justify funds to be utilized to cover travel needs
- Shipping supplies ahead of time from a durable medical equipment provider
- Pre-ordering groceries and having them delivered to your destination
- Renting a shower care
- Packing day by day for items necessary for each day
- Providing packets and information for fellow passengers
- Boarding the plane
- FAA approved seat harness available to keep passengers upright
- Noise-canceling headphones (for kids & adults)
- Video and photo social stories
- Bathroom locator apps for accessible restrooms
- The courage to give it a go
- Bed tents
- Free passes to national and state parks
- Beach wheelchairs
- Drive through zoos and safaris
- Accessible parking passes
- Easing into traveling and prepping the whole family
- Lowering expectations
Links
TSA Cares
Mamava
Accessible Travel in Florida
FAA Approved Harness
Autism on the Seas (For autism, Down syndrome and other disabilities)
Best Bathroom Locator Apps
Best Autism Bed Tents
Wheelchair Friendly Lodging in National Parks
FREE Lifetime Pass for National Parks
Facebook page for travel tips
Great travel tips for wheelchair users
Andrea Faris Roberts, renaissance woman, innkeeper, two-time non-profit starter, and mother of two children, including a son with Down syndrome. She graciously invited us to her flagship inn called the Terrace Guest House to tell us the story of its inception and discuss the importance of getting away. Join us as we discover how she created a beautiful way for parents and caregivers to experience true rest, what it took to create multiple sanctuaries for parents to recharge and how important it is to put ourselves on our own to-do list. #getinthecar
We talk about:
- The deep need for sleep
- Creating an organization from personal pain
- Reece’s Rainbow - international adoptions for children with Down syndrome and other disabilities
- The significant impact of caregiving and the unmet need for rest
- Creating a network of partner Inns (B&Bs) to serve families (40+)
- Curating the nation’s first year-round respite inn
- The unique thing about this sanctuary experience that meets unrealized needs
- Recuperative rest, not a vacation
- Putting yourself on your own to-do list
- Wishing that our kids didn’t have to struggle
- The trauma and challenges of raising a child with a disability
- Not “Embracing Holland”
- Her annual “Mommy & Me” trip for parents to get away with their child without a disability, or their own mom, or other special needs mom friend, or by yourself
- Andrea’s advice for new parents
Links
Links
A Mother's Rest
Angie's Blog Post About Staying at the Inn
Brick Fundraiser
Give Monthly to Help Keep A Mother's Rest Open
Social Media
FB - A Mother's Rest - public page
Shelley Kramm went from designer to special needs mom, to advocate then to non profit organization founder, then blogger, and she shares with us how she made her way through each of those roles as she focused on inclusive play and empowering women.
We talk about:
- Finding out her daughter has cerebral palsy
- Her transformation from mom to special needs mom
- Discovering the need for inclusive play spaces
- Putting her landscape design and architecture degree to use
- Deciding to start a non profit so all kids could have a place to play
- Making the connections to make her dream a reality
- Raising a million dollars for her park
- The birth of Hadley’s Park
- How over 50 parks were built in the mid atlantic area to serve everyone
- What exactly an inclusive park is and how it caters to all, no matter the disability
- Pivoting from one organization to another project, The DC Ladies
- Deriving joy from empowering women
- The shock of becoming a single parent
- Creating an online community for special needs moms
Links
Shane's Inspiration - Inclusive Play
Becoming Shelley
Washington Post Article - A Playground for Hadley
I am Able - How Sarah Kramm advocated for her sister
Social Media
IG - @SEKramm
FB - Becoming Shelley
Hadley’s Park - Facebook Page
Special Needs Moms of Montgomery County - Facebook Page
Special Needs Moms of Montgomery County - Private Facebook Page
Jackie Buzek, rare disease mom, doctorate level BCBA, and executive director of the Rise School Of Denver wrote a piece for the Mighty about her follow up on Welcome to Holland, where she shares what life has been like for her in this new, foreign land, so we knew that we just had to have her on the podcast! Join us as we find out how reframing our perspective can help us enjoy Holland!
We talk about:
- Getting a rare diagnosis shortly after the birth of her first child
- What it’s like embark on the journey to Holland after spending a career serving others already there
- Cri du Chat, “cats cry syndrome”
- Finding your people, even if it’s on social media through a hashtag
- Being taught how strong you can be
- The transition from grief to loving Holland
- Surviving the turbulent entry into motherhood
- Writing as a therapeutic outlet to process big feelings
- Living in the moment
- Reframing difficult situations as opportunities to learn
Links
Website - A Different Us
Our Follow Up on Welcome to Holland - MIGHTY article
Social Media
IG - @jackiebuzek
Bekah Bowman, mother, and author with a heart for ministry shares with us what it looks like to do the hard work of stepping into the church community to show them how to love kids with disabilities and to see the incredible gifts God has given them. Bekah continually points to joy in the middle of suffering and discusses how they are often roommates.
We talk about:
- How her world was rocked upon the discovery of her children’s rare disease
- Raising two children with Batten disease, a rare degenerative disorder
- Treatment for her son Ely while grieving the loss of Titus
- The freedom in finding others that understand
- Church life and disability life being at odds with one another
- How people with disabilities belong in church and the body is not complete without them
- Watching her boys teach people things about God that they would have never learned
- Having a painful experience at church and seeking a new church home
- Asking a new church for what she needed
- How healing it is to attend church when the entire family is loved and cared for
- The weakest parts of the church are the most valuable
- Joni and Friends Ministry
- Her book, “Can’t Steal My Joy: A Journey to a Different Kind of Brave”
Links
Website - Bekah Bowman
Joni and Friends
Bekah’s Book
Room For More Ministry - Coming soon!
Social Media
FB - @Team4TitusEly
IG - @bekahsbowman, @roomformoreministry
Related Episodes
Take Me to Church
Groomed for This with Eva Queen
This week we chat with Kalani Brown, mother of a son with Down syndrome and chair of the Maryland Developmental Disabilities Council, among many other roles. She shares with us the importance of inclusion and raising expectations for people with developmental disabilities.
We talk about:
- Receiving a down syndrome diagnosis and discovering support
- Navigating public school to find the balance of support and inclusion
- Shifting the idea that children are “suffering” from Down syndrome
- Launching into advocacy by serving in the community
- How Montessori concepts are designed for children with learning differences
- Changing the narrative about people with developmental disabilities
- Setting high expectations and following the child’s lead
Links
Maryland Developmental Disabilities Council
State Developmental Disabilities Council
Down Syndrome Diagnosis Network
National Down Syndrome Society
National Down Syndrome Congress
Local and National Down Syndrome Support Networks
Down Syndrome publications
Sting Sings Uplifting, Original Tune for World Down Syndrome Day
Books
- Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives – Kathryn Lynard
- Gifts 2: How People with Down Syndrome Enrich the World- - Kathryn Lynard
- Whole Child Reading: A quick-Start Guide to Teaching Students with Down Syndrome and Other Developmental Delays - Nathalie Hale
- Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method – David Stein
This week we chat with Dee Sapp, Executive Director of Accessibility Bridge Corporation, mother of three including an olympic swimmer with an intellectual disability. Dee shares with us how her passion for community inclusion lead to great things for her son and to the birth of an organization that serves to encourage people with all disabilities to integrate into the larger society and connect them with resources.
We talk about:
- Raising a son who is a competitive athlete with an intellectual disability
- Getting a proper, accurate diagnosis before the age of 18 to get appropriate services
- How support decreased after elementary school
- Pushing for inclusion in order to have success
- Getting the IEP team to think outside the box
- Exploring college options for students with intellectual disabilities
- Discovering the Think College resource
- Building the college wish list: social inclusion, academic inclusion, competitive sports
- Finding recognized and accredited programs
- Switching from public school to home school to prepare for college
- Creating a movement to rethink what people with disabilities can do
- Company programs targeted for people with disabilities
- Redefining the end goal, and thinking beyond graduating from high school
Links
Accessibility Bridge Corporation
Think College
Think College Documentary
During this episode, we chat with April Green, author, special educator, minister, and collaborator about raising three children on the autism spectrum and what has risen out of her family’s challenges. She shares the importance of storytelling and how we can tell our own stories.
We talk about:
- Parenting multiple children with autism that vary in presentation
- Reckoning with the perception of autism
- Looking at the total child when making decisions
- Encountering obstacles with the IEP team as a special educator
- Battling the school system to advocate for a diagnosis
- Acknowledging and accepting the call to ministry
- Experiencing church as a family with multiple disabilities and needs
- Being bold to share stories
- Letting it out and letting it flow
- Path to her book collaborations and how she’s helped others tell their stories
Links
Books
It’s Going to Be Aulright
Autism Relationships Matter
Social Media
April Green Facebook Page
April Green Instagram
Podcast
Keeping it Moving with April and Vondell
Related Episodes
Ausome Author and Advocate with Catherine Hughes
Take Me to Church
In celebration of International SCN2A Awareness Day on February 24th, we explore how SCN2A, a rare genetic disease, impacts each child. You’ll hear from four moms with four very different children. They will show us what life has looked like for them since their diagnosis and what they are doing as a result of knowing the genetic cause for their children’s medical conditions.
A BIG thank you to the four parents who shared their voices and stories for this episode.
- Katie Loosley
- Nikki Beasley
- Jenna Puteri
- Kris Ray
Other episodes from SCN2A parents
Seizing Joy and Grace with Tracy Umezu
Growing a Family Gratefully with Rachael Lividini
A Dad's Eye View
The Art of Supporting the Special Needs Mom
Links
FamilieSCN2A Foundation
FamilieSCN2A Global Support Group
SCN2A Related Autism & Epilepsy: The FamilieSCN2a Foundation
SCN2A Australia
SCN2A Insights Podcast
SCN2A Families UK - FB page
SCN2A Europe
Simon Searchlight - SCN2A (Research)
SPARK for Autism - SCN2A
A Walk with Jo Facebook Page
Eye Gaze - Think Smart Box
Look to Learn - Activities for Eye Gaze
Children’s Hospital of Philadelphia - Dr. Ingo Helbig
Children’s Mercy - Dr. Coffman
In this episode, we explore what it’s like to raise a child with Aspergers to be as independent as possible, and how to advocate for and alongside them. Carol is an internal medicine physician who has a specialty practice in non surgical cosmetic procedures. She’s also the host of the Autism Mom MD Podcast, and an amazing advocate for her children and others!
We talk about:
- Raising a son with Aspergers
- Finding the right kind of support for your child
- Learning how to motivate and encourage with the goal of independence
- Navigating driving, medical appointments, college and employment
- Raising expectations and setting the bar high
- Deconstructing and teaching independence skills
- Encouraging self-advocacy
- Partners in Policymaking
- Starting a podcast
- Creating community
- Being an innovator, she is the creator of TheraPearls!
- Creating space for yourself and your marriage
Related episodes
Others who have completed Maryland’s Partners in Policymaking program
Families That Advocate Together Stay Together with Laura Hatcher
An Alternative Approach with Diana Wingate-Gaiser
The World According to Jake's Mom with Jenn Lynn
Groomed for This with Eva Queen
Take Me to Church (Stephanie Watkins)
Guests who have completed PA’s Partners program
Ausome Advocate and Author Catherine Hughes
Changing Spaces and Creating Hope with Christina Abernethy
Links
Autism Mom MD Podcast
Maryland Partners in Policy Making Program
Life 360 - Family Locator and GPS Tracker
Maryland internist finds inspiration in her grocer's freezer
Ark Therapeutic Lip Blok Mouthpiece
Kids Slurp Straw 9 Pack
Stackable Stainless Steel Kids Cups for Toddlers
In this episode, we chat with Lauren Shillinger, a fierce advocate for her children and the passage of Brynleigh’s Act for Seizure Safe Schools.
We talk about:
- Finding a cause of her daughter’s epilepsy
- Tuberous Sclerosis Complex (TSC)
- Traveling to Texas for brain surgery
- Learning to navigate the system
- Turning grief and energy toward rare disease advocacy
- The TS Alliance and her work with the Maryland chapter
- Brynleigh’s Act for Seizure Safe Schools
- Ways to introduce legislation
- Giving back and finding hope
- The joy found in paying it forward
Related episodes
Families That Advocate Together Stay Together with Laura Hatcher
Changing Spaces and Creating Hope with Christina Abernethy
Links
Maryland General Assembly - HB370
Maryland General Assembly - SB225
Find your Maryland Representatives
Kindness is Golden book
Amanda Gorman, Youth Poet Laureate, has speech and auditory processing issues
Low Intensity Support Services - LISS
In this episode, we chat with Aimee Darby, founder of the Eliza Hope Foundation.
We talk about:
- Recognizing and savoring the important moments
- The devastation that is losing a child
- The remarkable way that Aimee has turned her grief into action
- A foundation built to nurture families running to multiple therapies
- Her come one, come all concept that serves all levels of functioning
- Equipping families while they are dealing with a new diagnosis
- Passing it on when its incredibly difficult to do so
- Eliza's purposes and the lessons taught in her four and a half years here
- The ability to celebrate other’s successes
- The critical importance of saying their name, and allowing their memory to live on
Related episodes
Seizing Joy and Grace with Tracy Umezu
Links
The Eliza Hope Foundation
The Pinecone Collection
Custom jewelry with all proceeds benefiting The Eliza Hope Foundation:
Holland
A blog post that Aimee wrote a month before Eliza passed
Eliza Hope
Aimee’s first blog post after Eliza’s passing
In this episode, we chat with teacher, Maura Moore, cheerleader of her students, encourager of those in her life, and developer of the Meep! Maura shares with us her vision to help those who are struggling and ways we can help too!
We talk about:
- Using creativity and crafting to support others
- The creation of emotional support orbs
- Helping others who are dealing with heavy things
- Creating and fueling a movement
- A creative way to connect during the pandemic
Links
All You Meep is Love
All You Meep Is Love Facebook Page
Meg's Favorite Cheap Crochet Hooks
For the last episode of our first season, we bring you a list of our most favorite things that would make wonderful gifts. From adaptive seating to innovative ways to swallow pills, to DIY options for swing, weighted blankets, to a tradition that will help your children focus on acts of service and more! We share product info and our experiences in hopes that these items will bring joy to your friends and family!Quip Toothbrush
Sensory Theraplay Box
Skootle Box
The Giving Manger
Kore Kids Wobble Chair
Little Sleeper Keeper
LED Diffuser
Weighted Stuffed Animal - Happy the Hedgehog
Inflatable Pea Pod
Kids Book Rack
Olive and June Poppy Nail Polish Holder
The Calm App
Book - Unbroken Faith: Spiritual Recovery for the Special Needs Parent
DIY Platform Swing
DIY Weighted Blanket
4 oz. Portion Cups
No-Tie Silicone Laces
No-Tie Elastic Laces
Echo Dot 3rd Gen Alexa
Museum Putty
Shower Dispenser
Wyze Camera
Gel Nail Polish
UV Nail Lamp
Medi Spout Pill Swallowing Bottle Cap
Pill Swallowing Cup
Melissa & Doug Reusable Stickers
Water Wow
Scented Water Activity Books
Waterproof Bluetooth Speaker
Visual Timer
Wool Roving
Beauty Coil Cotton
Bluetooth Headphones
Echo Show 5 Alexa
Food Dispenser
Sliding Door Lock
Ezy Dose Medicine System
Pill Organizer
Kids Foam Armchair
This episode was created in response to a listener’s email wanting to hear about how families make the decision to have another baby following their diagnosis. Rachael Lividini shares her experience of having a baby after having her first child diagnosed with autism and rare genetic disease. This episode is filled with such joy and gratitude, and must-listen for those families considering expanding.
We talk about:
- Navigating the new and sometimes scary world of rare disease
- Awakening of the mama bear mode
- Wrestling with the desire to have another baby
- Genetic and prenatal testing
- Making peace with parenting a child with a disability
- Finding gratitude in the hard places
Links
Have a desire to break your phone addiction? Revelation Wellness Phone Freedom Challenge
This episode is all about attending church with family members with disabilities and our tour guides for this one are Stephanie Watkins and Kris Detrow.
We talk about:
- Finding a church with all of the family member’s needs in mind
- Handling behaviors at church as a family
- Different church models of accommodating children with disabilities
- Communicating your family’s needs
- What makes a church
- Handling hurt within the Christian community
- What makes people walk away from the church
- Alternatives to typical church
Links
Have a desire to break your phone addiction? Revelation Wellness Phone Freedom Challenge
This week’s episode is packed full of wisdom, resources, thoughts, ideas and best of all the treasure that is Ms. Eva Queen. She shares with us the humanity of embracing people who are different.
We talk about:
- Eva’s advocacy work in the disability community that spans decades
- Her mission to bring inclusion to churches
- Dedication to preserving marriages
- The importance of early intervention and racial equity for children with disabilities
- Eva’s journey raising her daughter with a disability
- Tips for newly diagnosed families
Links
For a giggle, especially if you work at a college: Hamilton Higher Ed Parody
Maryland Parent Resources
Eva’s non-profit organization - Community Advocates for You
Kennedy Krieger Institute
Parents Place of Maryland
Eva’s Book! All Things Are Possible by Eva L. Queen
Marriage Ministry for parents of children with disabilities - The Hali Project
Sharing the Gospel with people impacted by disability Joni and Friends
In this episode, we talk about distance learning, homeschooling, unschooling, and all of our feelings and opinions about what the fall may look like.
Some highlights
- IEP considerations for homeschooling
- Maryland’s eligibility requirements for the Autism Waiver
Maryland Autism Waiver Info
- Becoming better school partners as a result of our front-row seat to learning
Homeschool resources mentioned
- AFLS - Assessment of Functional Living Skills
- Teaching Textbooks
- The Good & the Beautiful Homeschool Curriculum
What we talk about…
- Jenn and her son Jake’s work with their local police department on autism understanding and awareness
- Jenn’s pivot from a media career to one of community advocacy for people with disabilities
- Seeing behavior as communication - “Don’t shape by shaming”
- Mental health advocacy
- Adoption
- Being mentored by Temple Grandin’s Mom!
Bio
Jenn Lynn is passionate about helping all families dealing with Autism. She is mother of a teenage son, Jake, with Autism Spectrum Disorder, ADHD, Anxiety Disorder, Mood Disorder NOS, and Executive Function Disorder. Lynn serves on the Commission for People with Disabilities of Montgomery County, All Clear Education Services, the Arc US Diversity Committee, Humana Behavioral Health and collaborates with I/DD professionals and doctors. Ms. Lynn strives to educate, enrich, and empower parents and community members by sharing what she's learned from 4 years training Law Enforcement, 2 years as an ABA technician, experience with PBIS training, first-hand behavior training at the Kennedy Krieger Institute, her work in special education (public/private schools), and her job with adults with special attributes. The former TV news producer speaks and writes uplifting and encouraging stories of living on the spectrum at theworldaccordingtojake.com, is a published author, adoption advocate, is a Director on the Mattie J.T. Stepanek Guild for Sainthood and performs professionally as a flute/piccolo player.
Upcounty Community Resources
Maryland Teen Living With Autism Forms Relationship With Police
The World According to Jake
Council appoints member of the Policing Advisory Commission to improve oversight of the Montgomery County Police Department
Join us as we hear from three fathers who share with us what it has been like to parent children with disabilities, and how their view of their role and their children has changed over time.
We learn about...
- The impact on marriage and friendships
- Division of labor
- Change of parenting
- Civic duty to serve
- Pivoting your goals and dreams
- Reacting to a new normal
Simone LaFray and the Chocolatiers' Ball
This week on the podcast we bring you Tracy Umezu's story of losing two daughters in two years and her resolve to bring joy to others in her daughters' memory. Tracy takes us on a walk through her grief, her experience of seeing heaven, and gives us ideas on how to love others after the loss of a child. Tracy shares her story through her beautiful writing on her site, www.seizeyourjoy.org. Check her out and have a listen, you'll be glad you did.
Seize Your Joy
Today Show Parenting Contributor
Families SCN2A Foundation
Denise Sullivan Near is a Children’s book author who turns her first-hand experience with her sweet little girl into a fun, very simply written, educational picture book. Through “Nessie and Her Tisms,” Denise teaches young children about some of the unique behaviors of children on the spectrum by nurturing their natural curiosity. She is a mother, a wife, a writer, a Dental Hygienist and an Autism Awareness Advocate. She currently lives in Williamsport, Maryland with her husband Seth and three beautiful children, Kynzee, Harper and Duke.
Siblings of the Spectrum
Nessie and Her Tisms
Bath and Body Works Mint Lip Products
This week on the podcast we asked four sisters how their lives are impacted by the important role of being a sibling to someone with a disability. Between a pair of Hannahs and our two sweet little girls, you'll get a glimpse of their wisdom and we hope that you come away with ideas on how to care for, love, and support these special sibs.
Adam's Camp
Special Needs Family Camp
Wisconsibs Siblings of Campers with ADHD
Sibling Support Network
Three different moms of children with disabilities share what it looks like to feel supported through difficult times. If you ever wonder what special needs parents may appreciate tune in. And if you are a special needs parent and aren't sure how to ask for help, most definitely tune in.
Sam shares ways parents can be supported that you may not have thought of, Shelley discusses what it looks like to acknowledge when professional help is needed and how beneficial it can be, and Joyce shares how we need to get over ourselves and make it known what we need.
Image used with permission.
https://www.freepik.com/free-photos-vectors/background
Diana is the mother of two boys on the autism spectrum. She has a vested interest in homeopath and alternative therapy for treating symptoms of autism and the environmental toxicity link to autism including vaccines. She volunteered extensively for six years with Autism Speaks raising funds for the annual walk, recruiting legislative support, spreading awareness within the community and was the District Area Chair for their grassroots advocacy. Diana has spent countless hours advocating, emailing, calling and meeting with legislatures to help mandate insurance coverage in Maryland for children and adults with an autism diagnosis. This includes meeting with the Autism Technical Advisory Group at The Department of Mental Health and Hygiene and The Maryland Insurance Commission. This goal was accomplished through the collaboration of efforts with parents and stakeholders in the community including Pathfinders for Autism. The revised Habilitative Mandate went into effect April 17, 2014. Most recently Diana worked with local lawmakers to pass two very important pieces of legislation; ensuring P.A.N.D.A.S. was covered by insurance and ensuring pediatrics have access to medical marijuana in public and non-public school settings. Diana has 19 years of professional and financial experience with Johns Hopkins University. She is a warrior for her own kids and a dedicated advocate in the local and national community.
Links from the show
Whole Plant Access for Autism - Facebook Group
Maryland Medical Cannabis Commission
Realm of Caring - Cannabis Education Research and Support
The Rogue Map
Rogue Recovery Facebook Group
This week on Embracing Holland we chat about all things stay at home orders, and include resources that may be helpful as you hunker down at home.
Handling working & being home with kids
Schedules
Navigating children’s anxiety
Occupying littles
Guarding our mental health
Home haircuts
...and more!
Mayim Bialik - Some Thoughts From Home video - https://www.youtube.com/watch?v=aUnWJSkHYDM
Kendra Adachi - The Lazy Genius - http://www.thelazygeniuscollective.com/
https://www.youtube.com/channel/UCJDxz7WBmjSpYu4ogFbgxIQ
Cape May Zoo Talks - https://www.youtube.com/channel/UC7NH6m3PG5s6FWn0RRXs1Sw
San Diego Live Cams
https://zoo.sandiegozoo.org/live-cams
*Also recommend the little mini-series Penguin Beach - https://zoo.sandiegozoo.org/videos
Calm Chocolate - https://www.gooddaychocolate.com/products/calm?variant=6932889698369
Creekside Anxiety Comfort for Children - https://creeksidenaturals.com/product/anxiety-comfort/
Joy-Filled by Happy Healthy Hippy - https://happyhealthyhippieco.com/products/joy-filled
Parasympathetic Essential Oil by Vibrant Blue Oils
https://vibrantblueoils.com/product/parasympathetic-essential-oil/
Meditation Quickie - https://avivaromm.com/quick-meditation/
How to Perform 4, 7, 8 breathing - https://youtu.be/YRPh_GaiL8s
Dr. Elisa Song - https://healthykidshappykids.com/2020/03/28/gratitude-coronavirus-resilience/
Autism Homeschool Helper - https://theautismhelper.com/emergency-home-school-kit/
Jessa Seewald Little Boy Haircut Tutorial - https://www.youtube.com/watch?v=NnvaPAoEG1o
Curly Cut Tutorial - https://www.youtube.com/watch?v=ORv2hInGB0Y
Men’s Cut Tutorial - https://www.youtube.com/watch?v=RJk2rHpocP0
Laura is Simon’s mom and the Director of Communications for Little Lobbyists.
Laura believes that, regardless of health or ability, all people have the right to life, liberty, and the pursuit of happiness. She also believes that every person has gifts to share, celebrate, and use to make our world more beautiful.
Laura is a graphic designer, small business owner, and adjunct professor. She believes in the power of great design for great organizations and specializes in communication for education, health care, and the arts. She loves being in the classroom helping creative people turn their passion into their profession.
When she isn’t creating or teaching design, Laura works toward making the world a more beautiful place by volunteering on various board committees that support arts in education and the inclusion and celebration of people with disabilities. She loves being a mom to both her amazing kids, does a lot of yoga, bakes impressive cakes, and really appreciates a nice manicure.
Laura can be reached at laura@littlelobbyists.org
https://littlelobbyists.org/
https://cnd.com.ua/en/products/shellac-peacock-plume
Christina is a dedicated wife, mother of three, and passionate advocate for people impacted by disabilities. She has coordinated events to fund research, supports and service dogs for families. She has served on local committees, coached an adaptive cheerleading team, and won awards for successful fundraising endeavors including those for “Team Bubba,” honoring her son with autism. She is the founder of Love, Hope and Autism and is proud to be the coordinator for Changing Spaces Pennsylvania, a movement to build accessible restrooms with powered height adjustable adult sized changing tables across communities to promote inclusion. She is working with legislators to pass a bill in Pennsylvania that would require such facilities in hospitals, airports, museums, rest stops, malls and more. She also works as a Family Support and Community Engagement Specialist at Achieving True Self, supporting families like hers. Christina is committed to spreading a message of heightened awareness and acceptance of differences, ultimately inspiring hope. For her efforts, she won the ACHIEVA Award Of Excellence for Family Support in 2018 and in 2019 was awarded a medal by the Autism Connection of Pennsylvania. She is a two-time best selling coauthor, most recently including “You Are Not Alone: Stories, Resources and Hope From Autism Moms;” a book that is filled with inspiring stories, helpful resources, and ultimately hope for families to let them know that they are not alone in their journey and that they too were made for more.
Top 5 Tips for Taking on an IEP with Confidence
https://www.facebook.com/watch/?v=329167527805115
You Are Not Alone: Stories, Resources and Hope From Autism Momshttps://www.amazon.com/You-Are-Not-Alone-Resources/dp/1701275155?fbclid=IwAR3IWY6Z6ngb3NsMHq_Qu8vYXgYEgG-oNBDeUe8ESLltBSn233AJSFAr0IE
Tips and Tricks that helped us during the fluhttps://www.facebook.com/LoveHopeandAutism/videos/2599947736900132/
Meg & Angie share their special needs lifehacks
- Surviving medical & blood work appts
- Navigating insurance issues
- Money-saving ideas
- Making mealtime & grocery shopping easier
- Organizing & homes for things
- Taking meds
- Preparing for new things
- Elopement & wandering
- Obtaining medical equipment & fencing
- Technology to keep children safe
- Potty challenges
- And much more!
Tune in and check out our show notes!
Comfort Hold
Different holds for supporting a child during a pediatric procedure
https://www.nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/comfort-hold-techniques
Google Calendar for medical tracking
Each child has a separate calendar, but you could create calendars based on whatever you want to track.
https://lifehacker.com/track-medical-conditions-with-google-calendar-168218
TOILET TRAINING
The best videos ever - https://www.actcommunity.ca/education/videos/toilet-training-for-everyone?fbclid=IwAR1dIvCp_0fFIcADBbp-FZ7OH2BLZT11HfT6PJonayIVRKcieUvYzMI58gc
ACCESSIBLE PARKING
Link for guidelines per state - https://autismawareness.com/parking-permits-for-autism/
WANDERING/ELOPEMENT
Sleep Safe Bed - https://sleepsafebed.com/?matchtype=e&network=g&device=c&keyword=sleep%20safe%20bed&campaign=651802980&adgroup=30470176262&gclid=Cj0KCQiAkePyBRCEARIsAMy5SctAEsnDcZ7NUw61Ve4xokeMg1OhpUCJQqFpPfmZuN__llNGNtmtCcIaArVOEALw_wcB
Door sensor by Smart Things
https://www.smartthings.com/products/-/filter/categories/sensors
Fencing - Apply for grants
https://www.modestneeds.org/index.asp
Locator - JioBit - Real-Time GPA tracker - https://www.modestneeds.org/index.asp
Project Lifesaver - https://projectlifesaver.org/
DIY Swing
Borrow option from Equipment Connection - https://www.equipforchildren.org/
FOOD
Prepdish - fits special diets - https://prepdish.com/
VIDEO SOCIAL STORIES
https://www.lcsc.org/cms/lib6/mn01001004/centricity/domain/21/socialstories.pdf
PICTURE DAY
Download a YouTube video to your phone
https://www.engadget.com/2014/05/28/how-to-download-youtube-videos-to-your-iphone/
Meet Catherine Hughes.Hailing from southeast of Pittsburgh, PA in a small town recently dubbed as "the most boring town in Pennsylvania," Catherine Hughes is the daughter of two English professors. She is a passionate advocate, innovative storyteller, and community strategist.
For over 16 years, she has provided comprehensive support and passionate advocacy to individuals and self-advocates, their families, and surrounding natural supports throughout their communities. She considers herself a servant leader, one who cultivates, develops and maintains relationships with grace and grit in order to create, enhance, and promote services and programs that transform lives. On a personal level, her calling (not a career) allows her to give back some of what has so graciously been given to her family. She proudly serves as the Director of Family Support and Community Engagement at Achieving True Self servicing families across the Northeastern U.S.
Catherine is a best-selling author and editor for multiple books including It's Going to be AUlright: Testimonies from Ausome Women Raising Ausome People, Made for More - Mental Health Edition and You Are Not Alone: Stories, Resources and Hope from Autism Moms. She is set to release several more works in 2020. Catherine manages a blog and social media platforms as The Caffeinated Advocate.
If you were wondering about her caffeine of choice, she's a Dunkin' girl.
Living with her in that "boring" (ok, it's not actually boring) town but not so boring household are Mama Betty, Christian, and their pets Callie, Cookie, Candie, Hannah, Maddie and Raven the Cats and the one and only Abby Dog.
www.thecaffeinatedadvocate.com
Books by Catherine Hughes: amazon.com/author/hughescatherineFacebook: @caffeinatedadvocateInstagram: @caffeinatedadvocateLinkedIn: @catherineahughesAdvocate, Best-Selling Author, Editor, Speaker, and Trainer
Founder of The Caffeinated Advocate
Director of Family Support and Community Engagement, Achieving True Self
Autism Moms Are Beautiful Advisory Board
The ABA in PA Initiative Board Member
Join us as we embark on the Maiden Voyage of Embracing Holland. Before we dive into sharing interviews and topical episodes we thought we would start the journey with an introduction to who we are and how we landed here.
Angie is the mother of three children, a college disability advisor, and wife to her high school sweetheart, Isaac (Ike). Their middle child, Mark (nicknamed Mighty), was diagnosed with autism as well as a rare genetic mutation, SCN2A in 2015. Since this time she has spent the last five years volunteering on multiple community groups and boards with the hope of improving the quality of life and services for people with disabilities. Angie's passionate about creating community, sharing stories and supporting others in the face of fear and uncertainly.
During the time spent driving her son to his medical and therapy appointments, she began listening to podcasts, shows about autism, genetic research, parenting, true crime and everything in between. She fell in love with listening to others share their stories and wished that someday she could do some storytelling of her own in order to provide encouragement and hope to those who are walking alone in the early dark days of a new diagnosis.
On a trip to a special education law conference, she shared her interest to do a podcast with her friend Meg, and very soon after they purchased sound equipment and began practicing recording in Angie's dining room. The goal was to provide a glimpse into the world of parents turning the corner of grief and loss to possibility and ingenuity.
So they began searching for a podcast name and settled on Embracing Holland; a play on the name of the "Welcome to Holland" poem often given to parents of a newly diagnosed child. https://www.emilyperlkingsley.com/welcome-to-holland
As part of Angie's travels, she's met a number of advocates, bloggers, small business owners, authors, speakers, and change-makers all determined to create resources that did not previously exist, advocate for change and use their voices to make a difference in the world, specifically for people with disabilities. And so they wanted to share their stories with you.
You can find Angie on Facebook, Instagram, Pinterest and on her blog, www.mightyandthebean.com.
Find Embracing Holland on Facebook, Instagram, Twitter, and Pinterest. If you have an idea for a show, interview or question, please email us at hello@embracingholland.com
The TED Talk mentioned,
https://podcasts.apple.com/us/podcast/lies-our-culture-tells-us-about-what-matters-better/id160904630?i=1000440683496
If you are encouraged by our podcast please consider leaving a review on iTunes here!
Hi, I'm Angie Auldridge, and I'm Megan Barrett, Welcome to Embracing Holland.
When Meg and I received each of our children's diagnoses, we found ourselves in the land of worry, grief, and unknown, but after a while, when we realized that this excursion was not temporary we settled in and began to see life in a new way.
As a special needs rite of passage we were each handed the Welcome to Holland poem with the intent of showing us that this place is not so bad and in fact can be really beautiful.
Some days are dumpster fires and other days are filled with unexpected joy.
Regardless of the cause of your detour, the struggle to embrace this new life is universal.
Our hope is to share with you how ordinary people on this journey have unpacked their bags and faced adversity with creativity, passion, and determination.
We'll bring you interviews, field trips, cool stuff we find along the way and glimpses into the reality of raising children with differing needs.
Join us as we embrace Holland!