T21Mom.com: Recent Episodes
T21Mom.com
A family podcast about Down syndrome, single parenting, special needs, and pretty much everything in between.
Thinking of travelling with your child with Down syndrome but feeling a little overwhelmed? You're not alone!
In this episode of the T21Mom podcast, Mary is sharing everything she has learned from travelling internationally as a family. As Mary prepares for her third European adventure-this time to beautiful Italy, she looks back on what worked, what didn't and the lessons she has learned from her trips to Paris and Prague.
From navigating airports and surviving long-haul flights to packing essentials, sightseeing and embracing the unexpected, this episode is packed with practical tips and encouragement for families considering their own adventures.
Mary also shares a few recent family updates, including her second annual T21Mom Mingler for moms raising kids with the dual diagnosis of Down syndrome and autism, and her annual Ups and Downs BBQ.
If you've ever wondered whether travelling with your Rockin' kiddo is possible, this episode is your reminder that it absolutely is! It may not always be perfect, but the memories you'll make together are worth every challenge.
What happens when a viral story about Down syndrome reaches millions of people-but leaves out the voices of those who actually live it every day?
In this episode of the T21Mom podcast, Mary is joined by fellow rockin' mom and advocate Misty Snyder for an important conversation about a recent viral YouTube video that has sparked strong emotions throughout the Down syndrome community.
Together, they discuss why this story resonated so deeply with parents, self-advocates and families; the impact of fear-based messaging and misinformation; and how language shapes public perception of people with Down syndrome.
Most importantly, this episode is a reminder that people with Down syndrome are not diagnoses, statistics, or assumptions. They are individuals with dreams, personalities, relationships, challenges and extraordinary contributions to makes.
Whether you're a parent, family member, educator, advocate, or someone who simply wants to better understand the Down syndrome community, this conversation offers perspective, compassion and hope.
MistyCoySnyder.com
After a little post-Christmas hiatus (and recovering from hosting 26 people...send help :), Mary is back with a life update, and wow, there's a lot to share!
In this episode, Mary catches you up on what's been happening in her world, from holiday memories and reunions with dear friends, to big transitions at school and the emotional rollercoaster of navigating challenging behaviours, and of course, World Down Syndrome Day!
Last year was, quite honestly, one of the hardest that Mary has ever had. Between intense behaviours, constant dysregulation, and just trying to keep it all together, it pushed Mary to her limits. But something shifted and she wants to share that with you, because if you're in a season of hard right now, you need to hear this.
The holidays can be magical-and complicated-especially when you're parenting a child with Down syndrome. In this heartfelt and lightly funny episode of the T21Mom podcast, Mary is joined once again by fan-favourite guest Ron (and his Dollar Store bells!) for the annual Christmas show.
This episode explores what Christmas with a child with Down syndrome and the dual diagnosis of autism, really looks like-from changing traditions and Advent cookie calendars to headless gingerbread men and quiet Christmas mornings. Mary shares an honest look at special needs parenting during the holidays, including the joy, the grief that can quietly creep in, and how both can exist at the same time.
You'll hear conversations about:
- Navigating holidays while raising a child with disabilities
- Finding joy when traditions change
- Quiet Christmas mornings and realistic gift-giving
- Community, connection, and supporting other special needs moms
This episode is for anyone looking for an honest Down syndrome parenting podcast, a reminder that they're not alone, and encouragement that it's okay when your holiday season looks a little different.
So grab a cookie (or three) pour yourself something festive, and join Mary & Ron for a Christmas conversation that will make you laugh, reflect and find meaning an a beautifully imperfect Christmas.
It's the annual Rockin' Mom Retreat episode that was held at the beautiful resort called the Callaway Resort and Gardens in Pine Mountain, Georgia. Mary shares the challenges of going away for a few days-from lunches, to Pro D days and early dismissal and how much it means to her to get away. From guided hikes, to a murder mystery (so much fun) to golf carts, beach parties, a cottage pub crawl, pajama parties to emotional guest speakers (hint, Ruby's Rainbow), it was a fun filled and emotional retreat. The Haunted Rockin' Moms had their own Murder Mystery in 80's style and Mary chats with lots of Rockin' Moms about what the retreat means to them. Listen to hear from amazing women from all walks of life who are on a similar path of raising a child with Down syndrome and what it means to find a tribe and a community that supports you.
In this episode, Mary shares memories from a magical summer adventure in Prague, Czech Republic with Ainsley and Dennis. From wandering cobblestone streets to surviving the metro with a stroller, the magical scenery, the wild water slides and meeting up with an old university friend, this trip was one for the books!
Join us as we chat about:
Old Town magic-astronomical clocks, the Powder Tower, the John Lennon Wall and why Prague looks like a fairytale you accidentally stepped into
The Beer and Beer Spa-nothing beats a cold beer on a summer day or bathing in it!
Getting around-metros, trams and a little confidence
Our top family moments-including what Ainsley loved most (it was a "wild" ride!)
Whether you're planning your own European getaway or just listening with a cup of coffee in hand, this episode is warm, funny and honest peek into our summer abroad and travelling with our rockin kiddo and a family that loves to explore!
Summer may be over, but the new school year is just beginning-and for Mary and Ainsley, that means BIG transitions. In this episode, Mary shares the highs and the lows of saying goodbye to daycare after eight years (yes there were tears), their fun-filled trip to the PNE, and what it was really like starting Ainsley's first week of high school.
From emotional goodbyes, daredevil rides, and locker practice, to the ongoing saga of the 45 minute two block school bus ride, this episode is a mix of laughter, nerves and love.
If you've ever faced a big transition with your kiddo, you'll know exactly what Mary means. And if not-well, you'll probably laugh with her as she navigates this new chapter.
What stories or topics do you want more of on the podcast? Visit T21Mom.com to send a message or even a voicemail!
In this milestone 150th episode, Mary takes us on a rollercoaster of emotion, celebration, and cookie-fueled chaos as she shares all the beautiful-and bittersweet-moments from Ainsley's final days of school. From surprise awards and handmade cookie trays to an incredibly thoughtful gift from Ainsley's EA (spoiler: tears were shed), this episode is a love letter to growth, community and motherhood.
Plus, Mary dishes on the epic summer BBQ for her parent support group (water balloons + gourmet burgers = perfection), and gives a sneak peek into their upcoming trip to Prague-castles, Gravol and all!
In this fun, heartwarming, and very real catch-up episode, Mary shares what life has looked like lately-spoiler alert: it includes a lot of cookies, a masquerade-themed "non graduation" and yet another pair of Ainsley's glasses lost, this time to the deep, blue sea.
Mary chats about:
- Ainsley's upcoming transition to high school(!)
-Midnight cleanups and post-celebration tummy troubles
-Fundraising in a monsoon for the Run Up For Down Syndrome
-Hosting her first ever T21Mom Mingler
-The epic Boat For Hope even (and how glasses and water still don't mix)
- Summer adventures, Prague plans and podcast reflections
It's funny, honest, chaotic, and full of heart-just the way life is
Listen now on Apple, Spotify of wherever you get your podcasts!
In this episode, Mary is joined by child author Jeana Atkison to talk about her new children's book How to Eat a Cupcake. They discuss the inspiration behind the story, how it subtly and beautifully includes characters with disabilities, and why representation in children's literature is so important. Jeana shares her thoughts on integrating inclusion naturally through storytelling and the message she hopes kids and families take away from the book.
Order your copy of How to Eat a Cupcake at paperseedpress.com
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In this deeply personal and heartfelt episode of the T21Mom podcast, Mary opens up about a heavy season filled with hospital visits, health scares, and the current challenges of parenting. But through it all, one thing has kept her going-her tribe of Haunted Rocking Moms.
These incredible women, all moms of children with Down syndrome have wrapped Mary in love, laughter, and support when she's needed it most. From surprise gifts to heartfelt messages, they've reminded her that she's never alone.
This episode is a love letter to her tribe-a warm thank you and a reminder of the power of community when life gets hard.
Please subscribe and leave a review!
In this heartfelt episode, Mary chats with Cathy Middlestetter, mom to 27 year-old Cassie, who has Down syndrome. Cathy received a prenatal diagnosis just 11 days before Cassie was born-without the support of social media or online communities.
Mary loved hearing Cathy's journey-how her strength, determination, and how she found connection in those early days. From breastfeeding to inclusion, Cathy was a true trailblazer for the Down syndrome community.
Tune in to hear a story of courage, love and finding your people.
Connect with Mary: T21Mom.com Follow, subscribe and leave a review to support the show!
Happy World Down Syndrome Day! Today we are celebrating the incredible individuals who rock that extra chromosome-and yes, we're also rocking our mismatched socks! In this episode we dive into the fun and the real talk of World Down Syndrome Day.
World Down Syndrome Day is a day for joy, advocacy, and raising awareness, but let's be real-it can also be a tough day for some parents. Whether you're dancing in celebration or feeling all the emotions, this episode is for you!
So grab you mismatched socks, hit play, and let's celebrate together-whatever that looks like for you today.
Be sure to give a rating and leave a review!
Hey friends, it's your friend Mary, and yes-I'm back! Life threw a few curveballs (because of course it did) and I needed a minute. But I missed you all, so let's catch up!
In this episode, I'm sharing all the chaos, laughs, and real talk about what's been going on. From my aunt's health scare, to Dennis bravely tackling Costco (on a Saturday no less), to Ainsley's latest adventures -including her ongoing mission to break every iPad screen ever made.
Tune in to hear:
- Why my house feels like a circus with aging parents, Ainsley and family responsibilities
-Ainsley's ever-changing vocal stims (from wailing on a plane to grunting-I'll take it)
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How we accidentally joined Special Olympics and why I'm so glad we did
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The very real anxiety of high school transitions (spoiler: there are zero childcare options)
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Some unexpected wins-like Ainsley rocking swim physio, actually wearing goggles, and improving her reading skills!
My attempts at self-care (running, reading and knitting my "Paris socks"_
Let's be real-some days are just HARD. But there are always bright spots and I'm holding onto those.
Links & Resources:
Book I'm reading: I Don't Do Disability and Other Lies I've Told Myself by Adele Purdham
Have topic ideas or want to share your story? Leave me a message at T21Mom.com
Thanks for listening-l love you all! Keep on lovin' on your rockin' kiddos and I'll see you next time!
Please like and review the T21Mom podcast on Apple or Spotify!
It's the most wonderful time of the year, and we're back with the annual T21Mom Podcast Christmas Special! I'm Mary, mom to Ainsley, my amazing 12 year-old with the dual diagnosis of Down syndrome and autism, and I'm thrilled to share all the holiday fun, chaos and traditions with you in this episode.
This year's Christmas season has been a mix of festive joy and well, exhaustion! Between tackling 72 Advent Cookie Boxes (yes 72!), decking the halls a bit last, hosting our 2nd annual Haunted Rockin' Moms Christmas Zoom and gift exchange (which included wine, laughter and more wine), there's never a dull moment.
We also carried on our beloved traditions, like our annual cookie decorating party, which has grown to include nieces, nephews, friends and even Zahra, who insists it's now part of her tradition, too! I love seeing how these little moments become cherished memories for everyone.
In this episode, I also share some of our favourite holiday traditions, like Christmas Eve mass, a visit to my friend Marcie's for food and wine, and one of my favourite parts of the season-seeing the dazzling light displays at Capilano Suspension Bridge and Trinity Street.
We also chat about gift-giving struggles (anyone else have a kiddo who's tricky to shop for?), how Canada Post's strike led to creative Santa letter solutions and a bit of reflection on the podcast's future as we head into the new year.
So grab your Christmas bells (do you have them?!) and join us for some holiday cheer, heartfelt memories and a little holiday hilarity.
What are your favourite holiday traditions? Let me know-I'd love to hear how you celebrate!
Please leave a rating or a review on Spotify and Apple Podcasts.
Join Mary for another heartfelt chapter in the Down Syndrome Diaries: Diagnosis Stories. In this episode, Mary sits down with Rockin' Mom Colleen Johnson who courageously shares the raw and emotional story of her son Luke's diagnosis.
Colleen opens up about the grief that consumed her in the early days-grief so profound she wondered if she'd ever be able to "not see ." But through time, love and the unwavering support of her family, Colleen found her way to an unshakable bond with her son and a profound appreciation for the joy he brings into their lives.
One of the most touching moments Colleen shares is her mother's immediate acceptance of Luke's diagnosis. Her mom's calm reassurance and steadfast love became a guiding light for Colleen, reminding her that Luke was, above all else, her baby, a gift to love and cherish.
Be sure to follow Colleen and her family's story on Instagram at "Our life with Luke."
Thank you for tuning in to the T21Mom podcast. If this episode touched your heart, please share it with others who need a little inspiration today.
Please rate and leave a review on Spotify and Apple Podcasts!
Hold onto your wine, because this week Mary takes us to the Rockin' Moms Retreat in fabulous Las Vegas! It's an episode filled with friendship, laughter, and just a little bit of ghostly mischief.
Mary spills the tea (and maybe some cocktails) about how taking time away with her Haunted Rockin' Moms crew is the ultimate reset. Think poolside relaxation, late-night heart-to-hearts, and plenty of shenanigans that only a Vegas trip could inspire.
Highlights include:
Zak Bagans' Haunted Museum: Where Mary stared fear in the face...and probably laughed nervously.
Tiny Jesus: A small statue with a big story that will leave you inspired and giggling.
Hell's Kitchen: A dinner so amazing, even Gordon Ramsay might approve of the table manners.
Moms Night Out: Glamourous outfits, unforgettable memories, and zero regrets.
The Legendary Haunted Rockin' Moms Pub Crawl: Because what happens in Vegas stays...mostly in this episode.
There's laughter, inspiration, and maybe one or two questionable beverage choices-because let's be real, it's Vegas, baby!
Tune in for the fun, stay for the feels, and don't forget: what happens in the podcast might just stay with you forever.
Join Mary, Ainsley and Dennis on an epic journey to the Paris Olympics! This week's episode dives into the highs (and hurdles) of making it to Paris, from battling extreme motion sickness to a last-minute dead iPad. But once they arrived, the Games were an unforgettable adventure!
From the pool to the trampoline, and track to race walking, Mary covers it all! Get an insider's view on a jam-packed schedule that brought her up close with the world's greatest athletes. Hear Mary's thrilling accounts of iconic races, including the electric men's 100 metre final, Canada's unforgettable gold in the 4x100 metre relay, and cheering on Canadian stars Mo Ahmed and Marco Arop in track.
When they weren't at the Games Mary, Ainsley and Dennis explored some of Paris's most iconic sights, including the Eiffel Tower and the Champs Elysees. Mary describes seeing the iconic Mona Lisa up close at the Louvre and other memorable moments around the city of lights.
In this episode of T21Mom, Mary opens up about the significance of "Rocktober"-a special month for Down Syndrome Awareness. She discusses her personal approach to celebrating this important month and candidly shares the struggles she faces, including feeling guilty for not being fully engaged in the festivities. Despite her deep passion for advocacy, Mary talks about the exhaustion that sometimes comes with it, and how advocating can feel like a never-ending journey.
Mary also highlights some of the amazing ways other Rockin' Moms are celebrating and advocating during Rocktober, offering inspiration and ideas for those looking to get involved. Tune in to hear how you can make a difference this month, whether you're fully embracing Rocktober or finding your own unique way to contribute.
For more details, visit T21Mom.com
Join Mary in today's episode as she shares her personal journey through challenging times and the importance of self-care. In this episode, Mary opens up about the struggles that she faced when Ainsley started kindergarten, managing difficult behaviours and how she found her way back to focusing on her own well-being. Discover the tools that helped Mary through her hardest moments, from therapy to her "happy pill," and hear her heartfelt message to other special needs moms-you are not alone. Mary talks about the power of connection, sharing her experience with the Rockin Moms Retreat and how it transformed her life by bonding with other moms. She shares the importance of finding your community, whether in person or online, and how it can make all the difference on this journey.
In today's episode, we hear Melissa Miller's emotional story of how she received her son Hunter's Down syndrome diagnosis, which had a heartbreaking beginning. A doctor stood at the door of her hospital room , told her the news in the most impersonal way, and even suggested that no one would judge her if she left her baby at the hospital. This shocking experience was just 10 years ago, and sadly, similar stories are still happening today. But Melissa turned this negativity into strength and love for her son and hear how this negative experience lit a fire under her.
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Become part of the community at T21Mom.com
Thanks for listening and being part of the Tribe!
Summer is over and school is back in session! Mary shares about the return to school and Ainsley going into grade 7-her final year of elementary school. Mary talks about their wins, but also her trepidations and anxiousness over the coming school year and beyond.
In an intimate conversation, Mary sits down with Sandra Di Curzio, who opens up about the emotional journey she embarked on after her daughter Chiara's birth diagnosis. Sandra's story is one of raw honesty about post partum depression, guilt, and learning that life can still be beautiful while exploring the complexities of motherhood when life takes an unexpected turn.
Mary dives into an exhilarating conversation with John and Nicole Vester. From the very beginning, John was ready to document much of the pregnancy on his blog. Initially expecting twins, to later finding out there was only one heartbeat, the emotional rollercoaster didn't end there. As if decoding the NIPT results weren't challenging enough, they found themselves navigating the confusion that arose from Nicole initially carrying twins. Despite these issues. the odds of their baby being born with Down syndrome were low. However, when their son was 5 days old, they received the news that their son, Finn, was born with Down syndrome. For many, this might have been a turning point, but for John and Nicole, it was simply part of their incredible journey. Down syndrome didn't change their love or commitment, but rather strengthened their bond and their new resolve to give Finn the best life possible.
Their story is an inspiring testament to the power of love, patience and perseverance. The Vesters show us that no matter the challenges, with a heart full of love and a spirit of determination, anything is possible
Mary sits down for an enlightening conversation with Christiana Thiessen, a courageous Canadian who along with her husband moved to Jordan to assist with the Syrian refugee crisis. Just a year and a half later, Christiana discovered she was pregnant with her first child. Joy quickly turned to uncertainty when she learned that her baby would be born with Down syndrome. Facing this challenge in a foreign country was daunting.
Yet , Christiana's journey to acceptance was swift and profound. Within 24 hours of receiving the diagnosis, she embraced her baby's future with unwavering love. Despite facing skepticism from doctors and advice to return to Canada due to limited support for her baby in Jordan, Christiana and her husband made the brave decision to relocate back to Canada within six days of receiving their baby's diagnosis.
In her conversation with Mary, Christiana shares a powerful message: a Down syndrome diagnosis is not the end of the world. Instead, it opens up a path of different, yet equally meaningful experiences. Her story is a testament to the resilience of the human spirit and the boundless power of love and acceptance.
In an incredibly raw and often heartbreaking conversation, Mary sits down with Puja Mehta to delve into the story of her son Aaryav's diagnosis. Puja, who currently resides in India, spent several years in the United States, where she gave birth to both her children. She recounts the experience of a medical system that failed her long before Aaryav, who was born with Down syndrome, came into the world.
From the beginning, red flags were missed. Markers on her ultrasounds, indicative of Down syndrome, were overlooked. When Aaryav was born, Puja immediately sensed something was different-he didn't resemble either her or her husband and he struggled to latch. Despite these signs, no doctor followed up on one doctor's suspicion of Aaryav having Down syndrome that was noted in his chart.
Puja describes this period as an emotional time. It wasn't until a lactation consultant, four weeks after Aaryav's birth, congratulated her and remarked how beautiful Arya was, that Puja began to see a glimmer of light. This moment marked the beginning of her journey from shock and confusion to acceptance and love.
It's the end of the school year and Mary shares about the type of year it's been with another new EA for Ainsley. She shares Ainsley's successes and what it means to have a good team to support your child. Mary also talks about a great day at the PNE where Ainsley rode the big roller coaster for the very first time (she wasn't one bit scared) and their big plans for the summer.
In a heartfelt conversation, Mary sits down with Kim Revai, who shares the incredible and emotional story of her son Jace's birth. Kim's journey is a testament to the strength and resilience of a mother facing unimaginable challenges. Jace entered the world at an astonishing 26 weeks and one day, far earlier than expected. Kim, living far from her family was told to go directly to the hospital and prepare for his birth, plunging her into a whirlwind of fear and uncertainty.
Despite his very premature birth, Jace has defied all odds. Initially doctors believed he would need heart surgery and a tracheostomy, yet Jace has triumphed without either. Kim's narrative is one of enduring courage, demonstrating that even in the face of the hardest of trials , one can persevere and do hard things.
Admist the trials, Kim and her family have held onto their dream of RV living and making it a reality. This dream symbolizes not just the desire for adventure, but their relentless hope and faith in the face of life's toughest moments.
Mary and a group of her Haunted Rockin' Mom friends meet and go to the 150th Kentucky Derby. These women all met on a haunted pub crawl back in 2022, and have forged an incredible friendship. They pack in a lot over the Derby weekend, including a bourbon tasting, scooter escapades, the Thirsty Peddler and of course, the exhilaration of the Derby itself.
Mary sits down with Sabine Kussman, who recounts her poignant journey of her son Kian's diagnosis and her family's courageous path forward. From a heart-wrenching beginning, where two weeks passed without a single medical professional congratulating her on son's birth, to facing discouragement about breastfeeding, Sabine learned to trust her instincts. Despite therapists' negative predictions, Kian defied the odds, walking at 14 months , riding a bike and even mastering downhill skiing. Sabine passionately shares how her family, guided by unwavering expectations and love for Kian, does everything they dream of. In a deeply moving moment, Sabine remembers when her two year old son, with innocent wisdom, reassured her, "don't worry mommy, everything is going to be fine!" And indeed it has been-more than fine!
Mary has an engaging and heartfelt conversation with Shiloh Carte who shares her not very typical, diagnosis story. In fact, Shiloh predicted her child with Down syndrome! Over a year before she was even pregnant, Shiloh had a dream that was so vivid and so powerful that she knew with all her being that it had to be true-she dreamt that she was going to have a baby with Down syndrome and it would be a girl! Hear how Shiloh shares her vision with her husband, family and even medical professionals and how her dream came true!
Mary chats with fellow Rockin' Mom Stacey Herncane who shares her diagnosis story. Stacey waited in limbo for a week until she was given a definitive diagnosis for her son. From grief of thinking "why her" and how this just wasn't a possibility in her and her husband's lives, to taking lessons from third graders and learning to celebrate Down syndrome, Stacey goes through all the emotions. And sometimes the greatest lessons come from kids.
Mary's heart-to-heart with Dorothy reveals the power of faith and resilience in the face of life's challenges. Dorothy's journey from miscarriage to pregnancy is a testament to the human spirit and the importance of holding onto hope. Twenty years later, she recalls receiving the diagnosis news of her daughter Faith with such vivid detail, showing how these moments shape our lives and stay with us forever.
Mary's conversation with Kellie Anderson reveals a powerful story of resilience and hope. Despite Kellie's Rh factor creating obstacles during her pregnancy, she remained determined and inspired. When her baby Raina was born with Down syndrome, Kellie's husband provided unwavering support and reassurance. Kellie's message to new parents is one of positivity and courage, reminding them that everything will be alright.
Mary engages in a heartfelt conversation with Shelli DeGroot delving into her remarkable journey of diagnosis and resilience. Shelli recounts the unexpected twist of a pregnancy even after having her tubes tied, followed by the surprising news of her baby having Down syndrome. Through it all, Shelli finds solace in her faith, believing that her son is destined for great things. She reflects on the impact of a book she read during pregnancy which unknowingly prepared her for her son's birth diagnosis. Shelli's story is a testament to the transformative power of love and strength, as she shares how her son has not only enriched her life but also made her a better, more compassionate individual. Through her journey, Shelli reminds us that we possess untapped resilience and love, far beyond what we may believe possible.
Mary chats with mom Keller Kuhn for the first episode in the diagnosis stories series. Keller is Mom to Timmy, who is almost 22 years old, and she shares how she actually prayed for a child with extra needs, what prompted this and how she felt when her prayers were finally answered. Keller raised five children, including Timmy who has Down syndrome and the dual diagnosis of autism, as a single parent. She shares her wisdom from her journey and says she is not "super duper special" and that we have all been chosen because of what our kids have to offer us.
Mary shares her personal experience on this past World Down Syndrome Day and cool experience after wearing her "Love Down Syndrome" shirt. She also shares that even though this day is important, that this year she didn't do a whole lot other than wearing mismatched socks and her Down syndrome shirt and her subsequent feelings about this. And Mary also has some big news about her Haunted Rocking Moms and some exciting summer plans!
Mary chats with Lauren Zwick, mom to Emma and Lily who are identical twins with mosaic Down syndrome-a true rarity! Lauren shares the uniqueness of her twins and how their mosaicism affects them differently. It is a fascinating and intriguing conversation about twins, mosaic Down syndrome and Down syndrome. Lauren's daughter Lily makes an appearance and shares what it means to have Down syndrome and being an identical twin to her sister, Emma.
For more information on mosaic Down syndrome, visit imdsa.org
Mary shares her personal story of being a single mom by choice and receiving a prenatal diagnosis that her baby would be born with Down Syndrome. She talks of her intense feelings of grief and sadness upon learning of her baby's diagnosis, but also how she came to acceptance of the diagnosis and when her baby was born, it was a true celebration.
Mary chats once again with toileting expert Katie Rinald. Katie answers some of the most commonly asked question from parents who are toilet training their child with Down syndrome. Everything from when to start, is your child ready, how to get your child to initiate, even dispelling myths of toilet training. And Katie even answers the question about how to get your boy to pee standing up (her answer may surprise you!) and so much more.
Poop Teaching 101 Course
Videos From ACT (Autism Community Training)
Mary shares about the recent snowfall and how Ainsley actually enjoyed it. She also talks about what is happening at school, how Ainsley is participating, and her recent gains in speech. And finally, Mary talks about how you can be a part of an upcoming show!
Christmas traditions and how Christmas may look different for our children with Down Syndrome.
On today’s episode Mary talks with Ron about some of her favourite Christmas traditions, how she has learned to appreciate the “moments” and not worry about having the Hallmark Christmas. Mary also shares some other Rockin Moms Christmas traditions including Christmas Eve jammies and the White Elephant.
Be sure to check out Burnaby Village Museum
Jingle Bells by Kevin MacLeod https://incompetech.com/ Music Used under Creative Commons CC BY 3.0
On today’s episode, Mary shares the best birthday gift ever! Putting into Ainsley’s IEP “fostering friendships” turned into a heartwarming birthday card and a beautiful note by Ainsley’s EA for her birthday. She talks to how our kids, even those with the dual diagnosis, can still have genuine and meaningful friendships.
T21Mom.com
On today's episode, Mary talks with Carissa Carroll, founder of Jack's Basket. When her son Jack was born with Down syndrome, no one congratulated them and the delivery of his diagnosis by the health care provider left much to be desired. Carissa felt this had to change. What first started as leaving two baskets at the hospital, has led to Jack's Basket, a non profit organization that has delivered 8,000 baskets to 41 countries across the world! Carissa wants all our children with Down syndrome to be celebrated and the parents congratulated.
To order or receive a basket go to JacksBasket.org
On today's episode, Mary talks about a successful Halloween and an interesting trick or treat experiment involving a potato! Mary also shares how she was pleasantly surprised with Ainsley''s memory of her music therapy teacher. Mary also met Madison Tevlin-one of the stars from the movie "Champions" at the 321 Summit-a wonderful afternoon event. And she was very surprised to learn that Ainsley's new EA is in a book!
Rainbow Puppy Daycare Link
Mary heads to San Antonio, Texas for this year's Rockin Moms Retreat. Listen in as Mary chats with other moms, hears their stories, and learns what the Retreat means to them. There's another Haunted Rockin Moms pub crawl that may have been more sinister than ghostly, plus lots of wine, love and good times.
Plus a former co-host visits to hear the stories.
In today's episode Mary shares this year's IEP experience, which went pretty well! She also talks about Ainsley's new EA, how keen he is, and how he wants to make things more inclusive for Ainsley. Plus she has an update about Ainsley's palette expander (it's not good news), what she is doing for Rocktober, plans for Halloween, and a little story about how her advocating has really resonated with another mom.
T21Mom #T21Mompodcast #Rocktober #IEP
On today’s episode Mary talks with Patrick Cadigan and Megan Smallwood of the Post Secondary Transition podcast. They discuss the role of a Transition Coordinator, how to involve your child in these decisions, and the complexities of the post secondary transition.
Check out their websites at Postsecondarytransition.com and p2transition.com.
Mary shares her thoughts on the coming school year and how she is hopefull and optimistic despite all the changes. She also talks about how pleasantly surprised she was, when they all went out for the afternoon and Ainsley walked for hours with no complaint!
Mary chats with Dorothy Gazzola about how to prepare for your child to transition out of high school-it can be overwhelming! Dorothy is a wealth of information and talks about the different steps to take so that parents and your child are prepared. It’s never to early to start! As Dorothy was going through the whole transition with her daughter, Faith, what she wasn’t prepared for was the emotional side of it. Check out the notes below to learn what you need to do at different ages for you and your child to have a successful transition from high school onto their next journey.
Transitions Timeline
Mary talks about Ainsley's palette expansion and the challenges they are facing. Also, Ainsley had her first "official" salon visit and how that all went down!
On today's episode, Mary talks about her recent vacation and how it was so successful. Hint - it involves a large water slide. She shares some of the other fun and adapted activities that they did. She also talks about how she is creating her own Down syndrome community by hosting a BBQ for her parent support group that included a water fight, a cookie buffet and fun in the pool!
Mary talks with returning guest, Christine Wiebe, about homeschooling kids with Down syndrome. Christine believes that anyone can homeschool their child, you just have to have the desire and motivation to do so. They talk about the myth that homeschoolers lack socialization, the benefits of homeschooling and lots of tips and tricks to get you started or to help you on your journey. Several links were talked about during the podcast and you can find them here:
Homeschooling regulations in Canada Homeschooling regulations in Canada
Homeschooling regulations in the USA Homeschooling regulations in the USA
DSRF learn at home resources DSRF Learn at Home Resources
Homeschooling and Down syndrome Facebook group Homeschooling and Down syndrome Facebook group
Homeschooling Support and Down Syndrome (DSDN) Facebook group Homeschooling and Down syndrome Facebook group
Handwriting Without Tears Handwriting Without Tears
Teaching Reading to Children with Down Syndrome
In this episode Mary talks about her grief and some recent challenging times. She shares some of the tips she is using for self-care, including flowers and knitting. She admits she is not a fabulous knitter, but enjoys it anyways. And she chats about her upcoming getaway that includes wine.
Although the isolation is real, know you are not alone.
Mary talks with Rocking Mom, Stephanie, about Childhood Apraxia of Speech, also known as apraxia. Stephanie shares her journey about her son Odin, who likely has the diagnosis of apraxia of speech and how she has had to fight for services for her son. Stephanie talks about what to look for if you suspect your child has apraxia, and the different types of therapies her son needs.
For more information go to ASHA.org.
If you would like your own Characteristics of Down Syndrome picture, please contact Stephanie on Facebook at Advocate, Celebrate, Educate: Down Syndrome Awareness.
Mary shares about the end of the school year with Ainsley and some of the challenges this past year has brought, the dance recital, and Challenger baseball. She also talks about the ever increasing gap between Ainsley and her peers, and how that has affected her, but also shares her plans for the summer (it includes wine!)
The Essential Guide for Down Syndrome Families. Mary chats with rocking dad and author, Steve Friedman, who wrote “The Essential Guide for Down Syndrome Families.” This Guide, as Steve likes to call it, is an excellent resource for all families who have a loved one with Down syndrome and how to create a life of independence, regardless of how old your child is. As Steve says, it’s never to late to start!
To order the Guide go to BeyondDownSyndrome.net
Mary talks about her success at the Farmers Market selling cookies of course, and why she didn’t get a table next to Starbucks at the "Run Up For Down Syndrome". She also talks about the the Boat for Hope, an annual event, put on by Variety, the Children’s Charity, and how much they have done for Ainsley.
Mary talks with her friend Katie De Nardi Grant, a travel agent that specializes in creating vacations for families that have a child with special needs. Katie travels a lot with her daughter Sloan, who has Down syndrome and some other medical issues, but this has not stopped her. If there's a trip you want to take, do it, and Katie shares how. Katie provides lots of tips on how to navigate flying and to make it less stressful and anxious for everyone, and also talks about the different types of trips a family can take with their child with Down syndrome, including Disneyland, cruises,resorts and even dude ranches! Find Katie at unlockingspecialneedstravel.com
Today is another mini episode and Mary talks about the Run Up For Down Syndrome and her cookie fundraising for the event. She also talks about the Adaptive Dance that Ainsley has been going to since September and some of the ongoing challenges with that and her lack of participation. And of course, there's talk about cookies! DSRF.org
Mary chats with Melissa Hart about her recently released book “Daisy Woodworm Changes the World”, and about growing up with a younger brother who has Down syndrome. Melissa is a strong advocate for highlighting people with Down syndrome in various media and believes that people with Down syndrome add so much to families and friendships. And find out what happens when her brother Mark meets movie star Sandra Bullock! You can find her books at MelissaHart.com.
This episode has some audio issues and we apologize that we can't fix them.
This is a mini-episode of Mary sharing what's been on her mind. She talks about Challenger baseball, Mother's Day, some behaviour issues Ainsley is having at school, and trying to have some success gardening (Dennis is unsure of her success!).
Mary talks with Brady Murray of ROD's Heroes-an organization that is dedicated to helping children in orphanages that have Down syndrome and other disabilities, find their forever homes. Hear what happens when Brady decides to do an Ironman and allowed to let miracles happen! ROD's is an incredible organization that believes all children deserve a loving, forever home and to have the chance to sing the song they are meant to sing. Find out how you can become an Unstoppable Advocate, and perhaps you might find it in your heart to adopt one of ROD's Heroes. To find out more check out their Instagram at RodsHeroes and at RODS.org
Mary chats with Darcy Day on how she learned that her 18 year old son Brady, who has Down syndrome, was able to communicate through spelling! It is a fascinating and heart warming conversation about always assuming competence on our kids. Darcy is on a mission to help people with Apraxia find their voice through spelling to communicate (S2C). To find out more or to contact Darcy, go to Brand New Day.
Click here to learn more about Spellers - The Movie
Mary chats with Cristin Condon who is a life coach, meditation teacher and a Marie Kondo professional organizer. Cristin is a single mom with three kids including her son with Down syndrome and understands how important self-care is for parents of children with disabilities. Cristin has created a plan that helps parents deal with burnout and how we can enjoy our life again without sacrificing our child's needs. There are eight areas that Cristin focuses on for self-care for special needs parents, and they are all very doable and achievable. To find out more about Cristin and the types of programs she offers, visit CristinCondon.com
Mary talks with Rose Reif, a Licensed Clincical Mental Health Counsellor, about a topic we don’t hear about too often-grief. Rose provides insight and tips on how to handle and manage the grief of our child’s diagnosis. Rose talks about several things around grief-including that your grief does not mean you don’t love your child and why it can be important to schedule time to be sad and so much more. To learn more about Rose, visit RoseReif.com
We apologize for Mary's mic problems at the beginning of the interview. It couldn't be fixed "in post".
Mary has an eye-opening conversation with author Meeka Caldwell about her "My Friend Anian" book series. When Meeka couldn't find any books about Down syndrome and a black family, she decided to write her own. It's an open conversation about race, Down syndrome and having representation. Find Meeka's books at BrownBaby321.com or any online retailer.
In this last episode of Season 4, Mary and Ron have a chat about what Christmas will look like this year.
Sleigh Bells SFX Courtesy: License: Attribution 4.0 International (CC BY 4.0)
Music Attribution
Jingle Bells CC Commons LicenceJingle Bells by Kevin MacLeod | https://incompetech.com/Music promoted by https://www.chosic.com/free-music/all/Creative Commons CC BY 3.0https://creativecommons.org/licenses/by/3.0/
Mary talks with filmmakers Olivier & Hilda Bernier. The Bernier's have created a film documenting their son Emilio, who has Down syndrome, and his struggle with inclusion in the school system.
Mary tells tales from the 2022 "Rockin Moms Retreat" in Washington DC.
Make sure you have snacks and beverages, it's a long episode!
Mary talks with Dr Jonathon Santoro, Medical Director, Neuroimmunology and Demyelinating Disorders Program Attending Physician, Division of Neurology at Children's Hospital of Los Angeles about regression.
Mary talks with Sara Peralta, a Behaviour Analyst at the Down syndrome Resource Foundation.
Down Syndrome Resource Foundation
Mary talks with Dawn Barclay, author of "Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse".
Dawn Barclay's Blog
Amazon Link to Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse
Mary has a fascinating discussion with Dr. Vaish Sarathy about functional nutrition.
Functional Nutrition Website
Dr. Sarathy's Functional Nutrition Podcast
Mary has a fascinating conversation with Dr. Liz Head, Professor, Vice Chair for Research in the Department of Pathology & Laboratory Medicine at the University of California - Irvine, about research into people with Down syndrome and Alzheimers.
Canadian Clinical Trials
United States Clinical Trials
Mary and Ron catch up on how busy they have been over the first part of the summer.
Apologies for Ron's mic
Mary talks with Liv Meriano, a Speech & Language Pathologist at the Down Syndrome Resource Foundation.
Down Syndrome Resource Foundation
Mary talks with Ebonie Shaniece and Corinne Turrini about diagnosis and treatments for Infantile Spasms.
Mary talks with New York Times best selling author and podcast host Heather Avis of The Lucky Few.
HeatherAvis.com The Lucky Few Foundation The Lucky Few Podcast
Mary talks with Daria Kolmiiets about leaving Ukraine for Canada back in 2019 and her experiences in Ukraine as the mother of a special needs child, and more.
Donation Link for "The Red Cross For Ukraine" Campaign
Donation Link to "Ainsley's Army" for the Run Up For Down Syndrome
Mary has a conversation with Toilet Learning Specialist Dr. Katie Rinald.
Blackbird Toileting Website
Chummie Bed Wetting Alarm
https://toilettraining.thinkific.com/courses/poop-training-101
Poop Training 101
Toilet Training for Everyone
Katie's Instagram - Toileting101
Mary talks with Rockin Mom Falon Griffin about the adventure of delivering her daughter at a Chick-Fil-A restaurant.
Mary talks with Dr Gretchen Good about her life in New Zealand, and who has two adopted children with Down syndrome.
Mary talks with Megan Libassi about her birth diagnosis while working overseas, and about her fitness and wellness program designed for Special Needs Moms.
https://oxygenfitcoach.click/stayhealthy
In the Series 4 opener Mary and Ron catch up on what's happened over the show's hiatus, and where the new series might go.
Mary and Ron have a chat about how Christmas 2021 is shaping up for them and how they're looking forward to the New Year.
In this last episode of Series 3, Mary and Ron talk about the guests and topics that stood out to each of them through the year, and a brief look ahead to Series 4 starting in late January of 2022.
Mary has a kindred conversation with fellow cookie baker and T21Mom Miranda Klinger. The conversation wanders from baking and work spaces, to the hopes of developing real world skills for their respective daughters.
Instagram @21treatsyqr
21 Treats Contact 21 Treats
Mary has a conversation with Down syndrome community activist Josh Derrick about the multitude of ways he contributes to the community.
Josh Derrick Facebook
Mary has an illuminating conversation with Jolene Philo, co-author of "Sharing Love Abundantly in Special Needs Families: The 5 Love Languages for Parents Raising Children with Disabilities".
Different Dream Living
Jolene Philo's Blog
Book - Sharing Love Abundantly in Special Needs Families: The 5 Love Languages for Parents Raising Children with Disabilities
Mary chats with Inclusion Specialist Sara Jo Soldvieri about how to talk about inclusion, what it is, and what it looks like.
Sara Jo on Facebook
Mary talks with T21Mom Amanda Caffrey, mother of Rosie, about her New Jersey school district's refusal to let Rosie ride the school bus with her brother and care aide.
Link to Public Facebook Group "Let Rosie Ride"
Mary talks with Nashville based photographer Stephanie Mullowney who specializes in portraits of children with Down syndrome. Stephanie is also a single mother of a 7 year old daughter with Down syndrome.
Paper Dolls Photography Website
Mary talks with Lindsey Strickland, founder of "Worth The Conversation" about sexual abuse in the Down syndrome community. They discuss tips on prevention, how to talk with your kids about it, and recognizing the signs of abuse.
Worth The Conversation Website
Mary talks with Dr. Brian Skotko, founder of the Down Syndrome Clinic To You (DSC2U). DSC2U is a groundbreaking web portal for information and consultations on Down Syndrome.
DSC2U Website
Mary talks with Ella Cullen, author of "Breastfeeding and Down Syndrome: A Comprehensive Guide for Mothers and Medical Professionals", and founder of Julia's Way a resource group for mother's of children with Down syndrome who are having difficulty breastfeeding. Joining the discussion are Jill Rabin, a certified lactation consultant and Rachel Murphy, a mother who has succesfully used the techniques discussed.
Julia's Way
e-mail love@juliasway.org
Mary interviews Lauren Costabile. Lauren is the founder of Hearts Of Joy International, an organization that arranges heart surgeries for children with Down syndrome in less developed countries.
Hearts Of Joy International
Mary has a conversation with inspirational16 year old Reilly Cate who runs a non-profit that delivers gift baskets to families who have adopted children with Down syndrome
The Trium Tribe
Mary welcomes back Behaviour Analyst Katie Rinald for a conversation about toilet training techniques for older kids.
Blackbird Special Education Website
Katie can be reached at katie@blackbirdse.com
Special Warning This program involves a very frank discussion of human biology, puberty, and sexual development. Personal discretion is advised.
Mary has a very frank discussion with Andrea Lee of the Down Syndrome Resource Foundation about special needs kids and issues around puberty and sexual health.
Teaching Children with Down Syndrome about their Bodies, Boundaries, and Sexuality: A guide for Parents and Professionals – Terri Couwenhoven The Girls Guide to Growing Up – Terri Couwenhoven
The Boys Guide to Growing Up – Terri Couwenhoven
Talk Sex Today – Saleema Noon and Meg Hickling (I don’t think I actually mentioned this but it’s a great book that gives scripts for parents to talk about these things with their children, including a chapter on talking to your child with disabilities)
Sex is a Funny Word – Cory Silverberg
LINKS:
Circles of Intimacy – learning about different relationships
Real Talk – relationship and sexual health education for folks with cognitive disabilities. Lots of great videos to watch that would make for great starts of discussions.
Jessy Wollens – Special educator and sexual health educator
Lindsey Strickland – sexual abuse prevention worker and Down syndrome parent and advocate
Zones of Regulation
Ron and Mary talk about her recent fall that broke her foot, displaced her fibula and badly sprained the other foot. And about the "Mom Community" that came together to help her in a time of need.
Mary talks creativity and much more with dancer, choreographer, T21 Mom, and cancer survivor Starr Muranko.
Raven Spirit Dance - Chapter 21
Chapter 21 - The Documentary
Firehall Arts Centre - Chapter 21 Tickets
Mary chats with Scott Howe, Health Stakeholder Engagement Consultant for Special Olympics BC, and Susan Wang who is a Special Olympian and a Bronze Medal Winner at the 2017 Special Olympics held in Austria.
Special Olympics British Columbia
Special Olympics Canada
Special Olympics Worldwide
Mary and Ron talk about this year's World Down Syndrome Day, the video love letter Mary has made for Ainsley, and where to find it on our new YouTube Channel - T21Mom Podcast.
For Ainsley - World Down Syndrome Day 2021 on YouTube
This is the 50th episode of the T21Mom podcast! Mary and Ron take a look at past shows, how we've grown, and some former guests check-in.
The Low Down Podcast at The DSRF
Baskets Of Love
Mary talks with Amber Gale about the "MORE For Caregivers" program.
More For Caregivers Website
Mary talks with author Ashley Asti about her book "Up: A Love Letter To The Down Syndrome Community" and her work as Social Media Director at "Brittany's Baskets of Hope".
Brittany's Baskets Of Hope
Ashley Asti Web Site
Ashley Asti Instagram
Up: A Love Letter To The Down Syndrome Community at Amazon
Mary and Ron chat about the past few months and what's coming up in Season 3 of the T21Mom Podcast.
Mary and Ron chat about a much smaller Christmas 2020 and what it might look like.
A Hand For Mrs. Claus - Idina Menzel feat. Ariana Grande
Group Hug Apparel - Andrew Banar
Mary and Ron talk about what happened in the podcast’s second season including guests, highlights, working from separate locations, and a look forward to Season 3.
Doctor Susan Fawcett of the Down Syndrome Resource Foundation returns and talks to Mary about the current pandemic situation and the importance of mental health in our kiddos.
Down Syndrome Resource Foundation
susan@dsrf.org
Zones Of Regulation Website
Mary talks with Kim Storey, mother of 13 year old Kitty, about a dual diagnosis and their YouTube Channel "Cooking With Kitty".
"Cooking With Kitty" YouTube Channel
Mary and Ron talk about Mary's recent experience with Ainsley's daycare sending her home to isolate because they detected a rise in temperature, and a cough.
Mary talks vision care with Maria Dellapina of Specs4us.
Specs4Us
College of Optometrists In Vision Development
Mary talks with Teresa Unnserstall about her book and journey as a mom of a child with a dual diagnosis.
teresaunnerstall.com
Mary talks with her friend, Lisa about leaving Alaska for Portland, Oregon to get treatment for her daughter Sarah's Leukemia.
Instagram supersarahk
Facebook: Story Of Sarah
Be The Match (United States)
Canadian Blood Services
Mary and Ron talk about the overwhelming personal load on a special needs parent during the current state of affairs.
Mary talks with her daughter Ainsley's Educational Assistant, Roni Webster about the role and function of an EA.
This Is Ella by Krista Ewert
We'll Paint The Octopus Red by Stephanie Stuve-Bodeen
Mary talks with her friend Frank Bath about his daughter Ellie's open heart surgery. It's a poignant look at the process, and the toll of major surgery on children and their parents.
Mary talks with home schooling advocate and practitioner Christine Kasper Wiebe about tips and insights for parents who now face the prospect of educating their children at home.
Welcome To Mrs. Brown's House
Mary and Ron chat about creating their first show from separate locations as they engage in physical distancing. Then, Mary talks with Dr. Erica Peirson of the Peirson Center For Children about looking after children with Down syndrome in these health challenging times.
Peirson Center For Children
Systematic review and meta-analysis shows a specific micronutrient profile in people with Down Syndrome: Lower blood calcium, selenium and zinc, higher red blood cell copper and zinc, and higher salivary calcium and sodium
Zn2+ Inhibits Coronavirus and Arterivirus RNA Polymerase Activity In Vitro and Zinc Ionophores Block the Replication of These Viruses in Cell Culture
Vitamin D for prevention of respiratory tract infections: A systematic review and meta-analysis
Mary talks with John and Mark Cronin about John's online sock business, John's Crazy Socks. It's an inspirational and entertaining story about their company's mission to spread happiness.
John's Crazy Socks Webpage
John's Crazy Socks on YouTube
Mary talks with Reading Therapist Eleanor Stewart from the Down Syndrome Resource Foundation about helping special needs kiddos learn to read.
Reading Rockets
Down Syndrome Resource Foundation Videos
DSRF Video Playlist on YouTube
Down Syndrome Resource Foundation Web Page
Mary talks with her good friend Sharon, from England, about the Rockin' Mom connection that spans oceans. The two met while at the Rockin' Mom Retreat in Phoenix.
Mary talks with Kristy Fuller about her son, Karver who has mosaic Down syndrome.
International Mosaic Down Syndrome Association
Mary talks with Dr Susan Fawcett of the Down Syndrome Resource Foundation about the challenges of a dual diagnosis of Down syndrome and Autism.
Article : Putting The Pieces Together - The Down Syndrome Autism Connection
https://www.dsrf.org/
Email - Dr. Susan Fawcett
Building on her appearance in Episode 17, Katie Rinald returns to chat with Mary about steps and techniques for potty training.
Katie Rinald, BCBA Co-Director Blackbird Special Education
Chummie Bedwetting Alarm
Ikea - Lilla Children's Potty
Toilet Training Video
Mary talks with Sinead Quinn, a wellness coach who specializes in the care of Special Needs Moms.
Grateful Wellness Website
Grateful Wellness For Special Needs Moms Facebook Page
Link to "We Call B.S." Podcast
In the opening episode of Series 2 Mary and Ron talk about frustration, tears, and how to recognize when you've "maxed out" as a special needs parent.
The Headspace App
The Calm App
Mary and Ron discuss Christmas traditions and how she includes Ainsley in all of them.
Don't forget to send an e-mail to info@t21mom.com to enter the contest to win one of two Sm:)e Band Christmas CD's.
The Sm:)e Band Website
Trust - by The Sm:)e Band
Munchables Chewelry
Pop-Up Pirate
In the last episode of Season 1 Mary and Ron talk about how it all started. From our favourite episodes, where the show might go in Season 2, what we're doing on the hiatus, and some possible forays into other media streams it's a broad ranging discussion. There is wine, beer, and Miss A's Cookies to help us along.
T21Mom.com Web Site Design by Doug at Doug Murray Productions
Theme Music by Nam Kyo Kim at Skylark Therapy
For more resources:
Down Syndrome Resource Foundation
Down Syndrome Diagnosis Network
Variety, The Children's Charity
Mary and Ron talk about her recent trip to Nashville for the Rockin Mom Retreat. Mary talks to a number of of the Retreat guests about where they're from and what they do for self-care.
Head on over to the T21Mom Facebook page for some pics and videos. A word of caution - wine may have been involved.
For more on musician Luke Bryan
For more on musician Mark Wills
Mary talks with Dr. Karen Bopp about a dual diagnosis of Down syndrome and Autism, something previously thought impossible. They also talk about therapies, diagnosis methods, and support networks.
Links mentioned in the show:
BRITISH COLUMBIA LOCAL INFANT DEVELOPMENT PROGRAM
AUTISM SOCIETY OF BC
AUTISM INFORMATION SERVICES OF BC
DOWN SYNDROME RESOURCE FOUNDATION
Mary and Ron discuss the need to build a group of friends and family for emotional support.
Mary talks about her experiences with creating an Individualized Education Plan for Ainsley and the struggle of getting the school to play a positive role in the process.
Link to the One Pager
Mary talks with Katie Rinald of Blackbird Special Education about her approach to intensive potty training.
Blackbird Special Education http://blackbirdse.com/ Katie@blackbirdse.com
Chummie Alarms https://chummiebedwettingalarm.com/
Mary talks with Jen Ghioda, an Early Intervention Support Worker, about her role in finding and securing resources for families of children with DS.
Mary talks at length with Susan about 10 strategies for dealing with behavior challenges, including the dreaded “drop and flop”.
Down Syndrome Resource Foundation https://www.dsrf.org/
10 Positive Behavior Support Strategies
1) Down syndrome-specific setting event strategies. 2) Environment-specific setting event strategies. 3) Effective requests. 4) Offering choices. 5) Visual supports for behavioural expectations and predictability. 6) Incorporating preferences. 7) Safety signals. 8) Functional communication training. 9) Positive reinforcement of desired behaviour via praise and other rewards. 10) Actively ignore and positively redirect minor problem behaviour - Stone Face.
Here is the article Susan talked about: Patel, L., Wolter-Warmerdam, K., Leifer, N., & Hickey, F. (2018). Behavioral characteristics of individuals with Down syndrome. Journal of Mental Health Research in Intellectual Disabilities, 11(3), 221-246. Google scholar link: https://www.tandfonline.com/doi/abs/10.1080/19315864.2018.1481473
Actor, Producer, Director, DS Advocate, and Motivational Speaker Brian Donovan has an in depth conversation with Mary and Ron about his sister Kelly. The conversation roams from Brian & Kelly’s inseparable relationship that he documents in the film “Kelly’s Hollywood”, to his advocacy work, motivational speaking, and growing up in a very special neighbourhood in the ‘60s and ‘70s
Brian Donovan Web http://www.briandonovan.org/
Kelly's Hollywood http://kellyshollywood.com/Welcome.html
Brian Donovan - You Can Change The World https://www.youtube.com/watch?v=Xj9TkAwc6-0
Mary talks with Jen Jacob, Founder of the Down Syndrome Diagnosis Network, about their work with health care professionals so they better understand Down syndrome, and issues such as the impact of delivering the diagnosis. They also talk about the increasing success of the Rockin’ Mom’s Retreat.
https://www.dsdiagnosisnetwork.org/
Mary talks with Jenna about a form of Down syndrome called Translocation that can be inherited under certain circumstances. It’s a fascinating and easy to understand look at the genetics of Down syndrome.
Mary has a wide ranging discussion with Cally Wesson, CEO of British Columbia’s chapter of Variety The Children’s Charity. Cally explains the history of Variety, services that they provide, volunteers, and events they put on, including the annual Show Of Hearts Telethon. Recorded on location at the Variety offices in Burnaby B.C.
https://www.variety.bc.ca/
https://variety.org/
Mary talks with Physiotherapist Brenda Horton about how she helped Ainsley, and other children with Down syndrome, learn to walk, run, and swim.
T21Mom – Episode 9 : Hina, the Down Syndrome Resource Foundation’s Occupational Therapist joins us for a conversation about how children with Down syndrome can learn to understand and control their body’s feelings and movements, and why the term “Occupational” is a bit of a misnomer.
Understanding Sensory Processing - https://www.spdstar.org/basic/understanding-sensory-processing-disorder
Developmental Progression Pyramid - (the pyramid is included in these presentation notes that can be found on the DSRF website)
https://www.dsrf.org/media/Lille%20Ryan%20and%20Hina%20Mahmood%20Increasing%20Independence%20in%20School%20Aged%20Children%20with%20DS%20FINAL.pdf
When to Consult an OT - Document that outlines what types of skills OTs can work on with kids.
http://www.dsrf.org/media/When%20to%20consult%20an%20OT.pdf
The Down Syndrome Resource Foundation's Speech Pathologist, Riley, joins Mary for an in depth and wide ranging look at the work required to help kids with Down syndrome learn to communicate.
Here are some of the links mentioned on the show. For more links to studies and tips on speech and communication, please check our Facebook page "T21Mom".
Apraxia Kids – organization and web resources supporting people with Childhood Apraxia of Speech (CAS): https://www.apraxia-kids.org/
PECS – Picture Exchange Communication System - https://pecs-canada.com/pecs/
Signing Time - https://www.signingtime.com/
Signing Savvy (video dictionary of signs): www.signingsavvy.com
Touch Chat website – website for the AAC program Ainsley currently uses: https://touchchatapp.com/
Down Syndrome Resource Foundation (DSRF) - www.dsrf.org
Mary talks with Danielle Gibbons, founder of the non-profit Baskets Of Love. Baskets Of Love delivers baskets full of information and goodies to new parents of babies with Down syndrome. They also talk about the Tea21Moms event.
Links:
Baskets Of Love Contact www.basketsofloveds.com E-Mail - info@basketsofloveds.com
Instagram - @basketsofloveds Facebook - Baskets of Love Down Syndrome Support Society
Tea21Moms Contact www.tea21moms.com E-Mail - Tea21Moms@gmail.com Instagram - @tea21moms Facebook - Tea21Moms
Mary talks to Ron about the challenges and struggles of life as a single mother of a special needs child. Her labours to find suitable daycare, travelling to and from specialist appointments, finding time for the basics like groceries, and extensive efforts to work with her employer to understand her unique circumstance.
Mary talks with the amazing Kelci, a mother of eight who's family chose to adopt another two babies with Down syndrome. Check out her Instagram at BF_BROS.
Mary talks about life as a single mother of a special needs child. Mary's experiences as advocate, parent, doctor and therapist make for a lively discussion.
Mary chats about the annual Run Up For Down Syndrome event at Swangard Stadium in Burnaby, BC, her fundraising efforts, and the Down Syndrome Resource Foundation.
Mary talks about her experience receiving Ainsley’s Down syndrome diagnosis through pre-natal testing, and her process of acceptance.
This is it! The very first episode of T21 Mom! Sit back, relax and meet Mary (and Ron).