Today we’re diving deep into the way our children communicate! We’re asking some difficult but important questions about how we support their speech and language.
How do our kids feel when people cannot understand their speech? How do they feel when we, as their parents, cannot understand their speech?
How are we supposed to implement all the speech therapy tools? When is it time to just focus on one area of growth for our kids?
How do our kids use “self-talk” to share stories and self-soothe?
And that’s a wrap on this season focused on brain health and Down syndrome! We hope you learned as much as we did from these last 10 episodes. We’ll see you again in the new year!
SHOW NOTES
Visit our Therapist Directory to find mental health support for your loved one with a disability.
Fill out THIS FORM to be added to our therapist directory.
SPONSOR
Sign up for Enable SNP HERE.
Jennifer Gray is a certified speech-language pathologist with over 20 years of experience working with the Down syndrome community. Today we’re asking her all the questions we’ve forgotten to ask our children’s own speech therapists.
When should speech therapy start for individuals with Down syndrome? (Hint: Jennifer says research shows it can be helpful before age 1)
What makes speech more challenging for individuals with Down syndrome?
Can individuals with Down syndrome experience speech regression?
What is self-talk?
We hope you learn something from this important conversation about communication for people with Down syndrome!
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SHOW NOTES
Visit grayspeaktherapy.com
Instagram: @downsyndromespeech and @grayspeaktherapy
SPONSOR
Sign up for Enable SNP HERE.
Last week we sat down for an interview with trauma expert Dr. Karyn Harvey and today the three of us are unpacking all of our feelings about it. We’re asking ourselves some pretty heavy questions about trauma and intellectual disability.
Do our kids really encounter trauma every time they step out the front door?
Are we holding our children to unrealistic standards and expectations for behavior?
Do the benefits of an inclusive education outweigh the trauma that comes with it?
Why have our kids never been offered mental health support at any of their regular screenings?
Here’s what we know for certain: our children with intellectual disabilities understand when they are being excluded. And it’s our job to remind them just how incredibly lucky this world is to have them in it. Friends, we hope your children receive the mental health support they need so they can become exactly who they are meant to be.
SHOW NOTES
Learn more from Dr. Karyn Harvey and read her publications here.
SPONSOR
Sign up for Enable SNP HERE.
Dr. Karyn Harvey is a psychologist, author, trainer, speaker, and EXPERT in the field of psychology, intellectual disability, and trauma. Have you ever thought of the trauma that individuals with intellectual disabilities face each day? The examples are endless.. a negative diagnosis experience, being excluded, or even being placed in an institution. Today Dr. Karyn Harvey is on the show to teach us:
How does trauma influence behavior? What do symptoms of trauma look like in people with intellectual disabilities?
Can we assume that all individuals with intellectual disabilities face trauma?
What does therapy look like for an individual with an intellectual disability?
We’re also breaking down a few real-life examples of incidents in our child’s lives. This episode is full of wisdom for all of us who wish to support individuals with disabilities and their mental health.
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SHOW NOTES
Learn more from Dr. Karyn Harvey and read her publications here.
SPONSOR
Sign up for Enable SNP HERE.
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Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Last week we had an important conversation with Dr. Michael Rafii all about the link between DS and Alzheimer’s disease. If you’re still processing everything you learned from that interview, that’s okay. Sit down with the three of us + our good friend Kandi Pickard (CEO of the National DS Society) and we’ll talk through it together!
How do we confront medical discrimination?
Where can we get involved in research?
What does it mean that the NDSS has merged with LuMind? (hint: its a great thing for Alzheimer’s research!)
We know this isn’t an easy topic but this episode is full of hope. Remember, there are medical experts (like Dr. Rafii) and organizations (like NDSS) doing all that they can to improve the future for your loved one with Down syndrome.
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SHOW NOTES
Learn more more about Alzheimer’s disease from the National DS Society
Learn more about LuMind merging with the NDSS
Find resources on The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS)
Get involved in research with DS-Connect
SPONSOR
Sign up for Enable SNP HERE.
As we continue this season on brain health, its time to dive deep into the link between Alzheimer’s disease and Down syndrome. It’s not an easy topic.. and that’s why we are so grateful to have Dr. Michael Rafii with us. He’s a physician-scientist whose research focuses on developing treatments for Alzheimer’s disease, including a genetic form that occurs in people with Down syndrome. Dr. Rafii is breaking down these topics today:
Alzheimer’s 101: How does it progress over time? How many people with and without DS are likely to develop Alzheimer’s disease?
The science: What gene is responsible for causing Alzheimer’s?
Current breakthroughs: More people with DS are involved in the research and Dr. Rafii is focused on developing research methods that work for individuals with intellectual disabilities.
Take some notes, friends. This is an important one.
SPONSOR
Sign up for Enable SNP Today HERE.
Last week, we heard from motor planning expert, Brooke Poston, so today the three of us are diving deep into our experiences of apraxia with our own children! Here’s what we’re chatting about:
When are children aren’t cooperating, is it actually a behavior problem or an apraxia challenge? Do they need ABA therapy or motor coaching?
How can we implement these motor planning techniques all day every day?
Knowing what we know now, how can we offer more grace to our children when they appear dysregulated and/or uncooperative?
Make sure you listen to last week’s episode with Brooke first so you understand the basics of motor planning and apraxia before we dive into our personal examples!
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SHOW NOTES
Listen to last week’s episode with Brooke Poston for more information on motor planning.
Follow Spellers & Brooke on Instagram!
Visit spellers.com for more information.
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Have you ever found yourself asking your child to do the same thing over and over again? Why won’t they just stand up and put their shoes on? Why do they hit so often for what seems like no reason? Today is your crash course in motor planning and apraxia, where we’re diving deep into how the brain + body connection impacts behavior. We have Brooke Poston (Clinic Director and Spellers Method Practitioner) on the show to answer all of our questions:
What is the difference between apraxia, incompetence, and defiance?
How can a parent implement motor coaching techniques for children with DS? (hint: Start with the eyes! Use the motor coaching formula)
What should we do when our kids “flop and drop?”
How do we respond to injurious and out of control behaviors?
Get ready to take notes and pass this one along!
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SHOW NOTES
Follow Spellers & Brooke on Instagram!
Visit spellers.com for more information.
Learn more about motor planning from Elizabeth Torres and Dana Johnson
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Ellie Goldstein is the first person with Down syndrome to ever be on the cover of British Vogue. She’s also the first person with DS to ever be on the show, “Strictly Come Dancing” — basically UK’s equivalent of “Dancing With The Stars!” Naturally, the internet has A LOT of opinions about it. Today we’re diving into a Facebook post full of ableist comments disguised as empathy. And we’re wondering:
Would these comments be made about a celebrity without an intellectual disability?
What is the difference between supporting someone with DS and infantilizing them?
How do we change people’s minds about this?
This is a good one, friends! We’d love to hear what you think!
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SHOW NOTES
Follow Ellie on Instagram!
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
HELP US SHIFT THE NARRATIVE
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Welcome to a new season of the podcast and happy Down Syndrome Awareness Month! Or should we say DS Acceptance Month?! The advocacy language has definitely changed over the years. Lets talk about it. Here’s what you can expect this week:
How did DSAM become a thing? (Huge shout out to all the advocates who blazed a trail back in the 80s!)
What are we doing to celebrate this month? (Hint: not much!)
What is the difference between wanting to improve our kids lives and wanting to take their diagnoses away?
What are our advocacy goals for this month?
No matter how you’re celebrating (or not!) this month, we are cheering you on! Remember that your existence is your advocacy. And we are cheering for you!
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SHOW NOTES
Is there a Buddy Walk in your area? Find out here.
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
DISCOUNT CODE
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HELP US SHIFT THE NARRATIVE
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LET’S CHAT
Email hello@theluckyfewpodcast.com with your questions and Good News or Shout Outs for future episodes.
Today we’re talking about the people and places where we can keep our shoulders down and know that our children with Down syndrome will be accepted no matter what. Join us as we chat about:
Our stories of how we first connected with the DS community
Online connections vs in-person connections (Why does this one feel so much harder sometimes?)
Why is it important to build relationships with other families in this space?
We’re so grateful for organizations like the Down Syndrome Diagnosis Network (DSDN) who make connections between families based on age, location, culture, and more. If you’re searching for community, let the DSDN app be your first step.
SHOW NOTES
Learn more about the Down Syndrome Diagnosis Network
Download the DSDN app
Find a GiGi’s Playhouse near you
SPONSORS
Having a child with Down syndrome means you’re always learning about something new! And today’s topic is: oral facial myofunctional therapy.. a technique used to improve the way our mouth and face muscles work! We have Irene Iskander (dental hygienist + lucky mama) on the show today to answer all of our questions:
Why is mouth breathing so common amongst individuals with DS? What are the long term effects of mouth breathing?
What can we do at each age to strengthen mouth and facial muscles?
How is myofunctional therapy different than speech therapy or feeding therapy?
We didn’t realize how important this information was until we chatted with Irene! So tune in and take notes, friends!
SHOW NOTES
Follow Irene @fityourface_ on Instagram
Listen to 28 Reasons to Nasal Breathe from Ask The Dentist podcast
SPONSORS
National Down Syndrome Society
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Friends! Have you listened to The Telepathy Tapes Podcast? In this show, creator and host Ky Dickens explores the “profound abilities of non-speakers with autism - individuals who have long been misunderstood and underestimated.”
Let’s talk about it:
Have we experienced a shared consciousness with our own children? Is telepathy possible?
Why are people having such a hard time believing the stories from the autistic individuals and their families who claim to communicate with telepathy?
How has the disability community responded to the show?
We don’t know a lot for certain, but we do know this: Our children have shifted our paradigm and opened us up in ways we cannot explain. And we value the stories of non-speaking autistic individuals who communicate with OR without telepathy. Go ahead and listen to The Telepathy Tapes and let us know what you think!
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SHOW NOTES
Listen to The Telepathy Tapes Podcast
SPONSORS
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Sid Ghosh is 18 (going on 81) years old and he just published his first full length book of poems with a major poetry company. He’s been given extraordinary praise from renowned authors, and us too of course! Here’s what we’re talking about today:
Sid’s poems about his profound experience the world, as an autistic adult who has Down syndrome and uses a communication board (Spellers style!)
Why it’s important to challenge our comfort zones to get a glimpse into a more fully profound way to be human.
What the publishing process was like + where and when you can BUY this book!
There’s a lot of talk about energies, frequencies, and connectivity in this one too. We hope you join us for this incredible interview with Sid Ghosh, and his mother, Dr. Vaish Sarathy!
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SHOW NOTES
Purchase Yellow Flower Gills Me Whole by Sid Ghosh
Follow @downlikesid on Instagram
Subscribe to Sid’s stubstack newsletter
SPONSORS
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Oxford Dictionary defines ableism as: “discrimination in favor of able-bodied people.” And on today’s episode, we’re defining ableism with our own examples:
When someone is shocked by our child’s capabilities
When someone is suprised by our strong connection to our children
When someone volunteers for a disabilities organization believing they’re a hero
A lot of ableism is just actions and systems that we may have never questioned.. until being affected by disability. So what do we do when we experience ableism in our communities? Lets unpack it in this week’s episode.
SHOW NOTES
Follow @open_future_learning on Instagram!
Follow @ndss on Instagram!
Follow @shaneburcaw on Instagram!
Disability Euphemisms video from @blairimani
Listen to 172. Defining Ableism, Allyship & Advocacy + Redefining "Inclusion" - ft. Dr. Priya Lalvani
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After so many years in the Down syndrome community, we’ve had our fair share of surprising and even disappointing experiences with other advocates. The more we put ourselves out there, the more opportunity there is for disagreement. So what happens when there’s division amongst mothers in the Down syndrome community? Join us for a chat about:
Unwritten rules and competition.. what happened to collaboration?
Managing intellectual property.. what belongs to the individual vs the community?
Social media stand-offs.. how do we engage in productive conversations?
Ironically, the DS community doesn’t always feel inclusive. So what can we do to support the bigger picture even if we disagree on smaller things? Lets start by assuming the BEST in each other.
SHOW NOTES
154. Community Over Competition ft. Chantele Holm
SPONSORS
Summer isolation for our kids with disabilities.. It’s not fun to talk about.. which means we probably should. Lets unpack it:
Why is no one reaching out to our children to hang out over the summer?
What happens when full inclusion during the school year still doesn’t foster meaningful friendships for your child?
What do we do with these feelings of loneliness? How do we talk to our kids about this?
With our kiddos growing up, we’ve noticed huge changes in the social dynamics that have left our kids with disabilities feeling lonely over summer break, especially when compared to their neurotypical siblings. If you’re a parent to a child with a disability, you may have noticed this as well. We might not have all the answers but we want you to know: we see you and we are cheering you on in this!
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SHOW NOTES
297. Extracurricular Activities and Inclusion: How to Make it Work for Our Kids with DS
213. The Beauty and Challenges of Adaptive Programs
164. Choosing Your Summer Battles
SPONSORS
National Down Syndrome Society
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
In this current political climate, one of our goals is to keep you all up to date on the legislature that impacts our community. So friends, its time to talk about the “Big, Beautiful Bill” and how it will affect individuals with Down syndrome. We are SO grateful for an incredible guest to help us out. Sean Feely is the new Director of Advocacy and Policy at the National Down Syndrome Society and he’s here today to answer all of our questions..
We’re also asking the productive questions.. What can we do now? What sources can we trust? Grab a pen and get ready to take some notes!
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SHOW NOTES
Sign up for the National Down Syndrome Society’s newsletter HERE.
Listen to our episode with Charlotte Woodward about organ transplant discrimination HERE.
SPONSORS
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
We’re talking about a not-so-fun part of summer today.. summer school! Specifically, extended school year (ESY) for our children with Down syndrome.
This is an interesting conversation about what it means to be a student with a disability, why inclusion during the school year is an important set-up for summer success, and how privilege plays a role in all of this. We think you’ll learn a lot from this episode, friends. Enjoy!
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SPONSORS
JOIN THE LUCKY CREW
Join us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Welcome to a new season of The Lucky Few Podcast! We’re starting off strong with an episode all about… diversity, equity, and inclusion. Because these are more than just buzz words, friends. Let’s talk about it:
We’re also introducing our guest host for the season.. Brandy Coleman! She’s an advocate, educator, wife, and mother of seven - including her daughter with Down syndrome! Brandy works with the Down Syndrome Diagnosis Network to make sure all families feel seen, heard, and supported. She’s a fierce advocate for BIPOC families and we’re SO grateful for her perspective this season.
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SHOW NOTES
Follow Brandy’s Facebook page: “Tiny Treasure's Trisomy 21 And CHD Journey”
Learn more about the Down Syndrome Diagnosis Network
Download the DSDN app
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