The Lucky Few

Show NotesIn this episode of were talking about infantilizing — what it is, how it shows up, and why it matters.To infantilize someone is to treat them as younger or less capable than they are. For people with disabilities, this often shows up in subtle but harmful ways: baby talk, lowered expectations, behavior plans for age-appropriate teen behavior, speaking about someone as if they aren’t in the room, or limiting choices because we assume immaturity.We share real stories:When typical high school behavior is labeled as a disability issueHow communication differences get mistaken for lack of intelligenceThe risk of tying maturity to verbal skillsThe hidden cost of withholding autonomy and choiceHow even we, as parents, have had to unlearn assumptionsWe talk about the radical assumption of competence — and how dignity starts with how we speak.Our kids’ age is their age.Their interests don’t define their intelligence.And adults deserve to be treated like adults.This conversation is nuanced. It’s uncomfortable at times. But it’s necessary.Let’s raise expectations.Let’s offer real choices.And let’s stop talking to adults like they’re toddlers.

In this episode of The Lucky Few Podcast, we continue our What I Wish I’d Known series by talking about inclusion — and being honest about how it actually feels.When we hear the word inclusion, we don’t immediately feel hopeful. We feel heaviness. Process. Fight. Sometimes discouragement.We talk about why inclusion so often becomes a disability service instead of a true community responsibility. We wrestle with school settings, adult programs, housing, and the limited options available once our kids grow up. We name the exhaustion of always being the one advocating — and the toll it takes on our kids to keep showing up in spaces not built for them.At the center of this conversation is this truth:The existence of a person with Down syndrome in the world is their resistance.Our kids take up space. They walk into rooms. They show up in communities that weren’t designed for them. That matters.Inclusion isn’t a program to be applauded. It’s a cultural shift. And while we may feel weary some days, we still believe our kids belong — not as a service, but as neighbors, coworkers, and friends.We see you doing the work. Take a breath if you need to. And keep going.Show NotesFor more thoughtful work on disability, community living, and person-centered inclusion, visit Open Future Learning: https://www.openfuturelearning.org/**Interested in diving deeper?We’ve talked about inclusion before — especially in the context of school, IEPs, and advocacy. If you want to explore more episodes with an emphasis on inclusion in education and collaboration, start here:Episode 78: Building Trust (Not Barriers) w/Your Child’s IEP Teamhttps://www.theluckyfewpodcast.com/episodes/iep-advocacyEpisode 94: IEPs During COVID-19 (ft. Vickie Brett & Amanda Selogie)https://www.theluckyfewpodcast.com/episodes/inclusive-education-projectEpisode 270: IEP Success: How to Plan, Communicate, and Collaborate (w/April Rehrig)https://www.theluckyfewpodcast.com/episodes/270-iep-success-how-to-plan-communicate-and-collaborate-april-rehrigEpisode 272: What Do We Wish We Knew Before Our First IEP Meeting?https://www.theluckyfewpodcast.com/episodes/272-what-do-we-wish-we-knew-before-our-first-iep-meeting-heather-avis-mercedes-laraEpisode 273: Breaking Down Barriers: The Parent’s Role in IEP Success (w/Ashley Barlow)https://www.theluckyfewpodcast.com/episodes/273-breaking-down-barriers-the-parents-role-in-iep-success-with-ashley-barlow

EPs can feel overwhelming, emotional, and complicated—and that’s because they are.In this episode of The Lucky Few Podcast, we kick off our new season, What I Wish I’d Known About…, by talking about IEPs—what we wish we understood from the very beginning, and what we’ve learned the hard way.Fresh off a multi-hour meeting, we share honestly about the exhaustion, the tension, and the “us vs. them” dynamic that can creep in. We unpack how evaluations drive goals, how goals drive placement, and why learning the language of the IEP changes everything. We talk about inclusion, evolving expectations, and what it looks like to follow our child’s lead as they grow.Most importantly, we remind ourselves—and you—of this:Our kids are not problems to fix.The IEP exists to serve them.Whether this is your first meeting or your fifteenth, we hope this conversation helps you feel more steady, more informed, and less alone.SHOW NOTES:For more practical guidance, we’ve learned a lot from Ashley Barlow and her work at Ashley Barlow Co.. She offers clear, actionable resources to help you navigate IEPs, strengthen your advocacy skills, and understand your rights—all in one place.Check out more IEP Episodes:78. Building Trust (Not Barriers) w/Your Child’s IEP Team – IEP advocacy tips.94. IEPs during COVID-19, ft. IEP Lawyers Vickie Brett & Amanda Selogie – IEPs & distance learning.272. What Do We Wish We Knew Before Our First IEP Meeting? – Reflections on early IEPs.270. IEP Success: How to Plan, Communicate, and Collaborate (w/April Rehrig) – Practical IEP strategies.273. Breaking Down Barriers: The Parent’s Role In IEP Success (w/Ashley Barlow) – Parent advocacy in IEPs.CONNECT WITH THE PODCASTWEBSITEINSTAGRAMFACEBOOKCONNECT WITH HEATHER AVISWEBSITE: THE LUCKY FEW OFFICIALIG: THELUCKYFEWOFFICALFACEBOOKI LIKE YOU SO MUCHTHIS IS DOWN SYNDROMECONNECT WITH MERCEDES LARAIG: HOORAY4THELARASIG: HUMANLY.TVFACEBOOKCONNECT WITH MICHA BOYETTMICHABOYETT.COMIG: ACEFACEISMYFRIENDIG: MICHABOYETTLISTEN TO THE SLOW WAYDISCOUNT CODEFriends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off!HELP US SHIFT THE NARRATIVEInterested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!LET’S CHATEmail hello@theluckyfewpodcast.com with your questions and Good News or Shout Outs for future episodes.

We’re bringing back one of our favorite conversations in honor of an extraordinary athlete, mom, and advocate who continues to redefine what’s possible.Elana Meyers Taylor is a five-time Olympian and one of the most decorated athletes in winter sports history. She has earned one gold, three silver, and two bronze Olympic medals for Team USA, and is a four-time World Champion, with two gold medals in both the two-woman and mixed team events. She is also the most decorated Black winter Olympian of all time.But medals are only part of her story.Elana is mom to two boys. Her son Nico has Down syndrome, and both of her sons are deaf. In this episode, she shares what it was like to welcome Nico at the start of the pandemic while continuing to train at the highest level. It’s an honest look at motherhood, elite sport, and advocacy.Elana brings her family with her and uses her platform to speak openly about Down syndrome, ASL, and greater inclusion in winter sports.As we replay this episode, we’re cheering her on — not just for what she’s accomplished, but for how she leads.

January felt heavy. So instead of pretending we had it all figured out, we talked honestly about what we wish we’d known earlier.In this kickoff episode of What We Wish We’d Known, Heather, Micah, and Mercedes reflect on lessons that only come with time, experience, and a lot of unlearning.In this episode, we talk about:Letting go of milestone pressure, assuming competence, and unlearning ableismRethinking inclusion, communication (including AAC), and what real support looks likeIdentity, advocacy, and why the goal was never a “poster child” — just a whole humanThis episode is part reflection and part reset. Whether you’re brand new or years into this journey, we hope it gives you permission to breathe, recalibrate, and keep learning.💛 DM us what you wish you’d known — and what you want us to cover this season.SHOW NOTES Check out AbleNet, an assistive technology company that helps families access AAC devices quickly, often handling insurance and paperwork on their behalf.DISCOUNT CODEFriends, grab your narrative shifting gear over on ⁠The Lucky Few Merch Shop⁠ and use code PODCAST for 10% off!HELP US SHIFT THE NARRATIVEInterested in partnering with The Lucky Few Podcast as a sponsor? Email ⁠hello@theluckyfewpodcast.com⁠ for more information!LET’S CHATEmail ⁠hello@theluckyfewpodcast.com⁠ with your questions and Good News or Shout Outs for future episodes.

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 NOTESVisit 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.SPONSORSign 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!--SHOW NOTESVisit grayspeaktherapy.com Instagram: @downsyndromespeech and @grayspeaktherapySPONSORSign 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 NOTESLearn more from Dr. Karyn Harvey and read her publications here. SPONSORSign 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.---SHOW NOTESLearn more from Dr. Karyn Harvey and read her publications here. SPONSORSign up for Enable SNP HERE.JOIN THE LUCKY CREWJoin 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.--SHOW NOTESLearn more more about Alzheimer’s disease from the National DS SocietyLearn more about LuMind merging with the NDSSFind resources on The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS)Get involved in research with DS-ConnectSPONSORSign 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. SPONSORSign 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!---SHOW NOTESListen 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 CREWJoin 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! --SHOW NOTESFollow Spellers & Brooke on Instagram!Visit spellers.com for more information. Learn more about motor planning from Elizabeth Torres and Dana JohnsonJOIN THE LUCKY CREWJoin 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! --SHOW NOTESFollow Ellie on Instagram!JOIN THE LUCKY CREWJoin 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 NARRATIVEInterested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!

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! --SHOW NOTESIs there a Buddy Walk in your area? Find out here.JOIN THE LUCKY CREWJoin 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 CODEFriends, grab your narrative shifting gear over on The Lucky Few Merch Shop and use code PODCAST for 10% off!HELP US SHIFT THE NARRATIVEInterested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information!LET’S CHATEmail 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 communityOnline 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 NOTESLearn more about the Down Syndrome Diagnosis NetworkJoin a DSDN group online or locallyDownload the DSDN appFind a GiGi’s Playhouse near you SPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods Heroes

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 NOTESFollow Irene @fityourface_ on InstagramListen to 28 Reasons to Nasal Breathe from Ask The Dentist podcastSPONSORSNational Down Syndrome SocietyiCanShine ProgramsDown for GreensRods HeroesJOIN THE LUCKY CREWJoin 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!-- SHOW NOTESListen to The Telepathy Tapes PodcastSPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods HeroesJOIN THE LUCKY CREWJoin 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! --SHOW NOTESPurchase Yellow Flower Gills Me Whole by Sid GhoshFollow @downlikesid on InstagramSubscribe to Sid’s stubstack newsletterSPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods HeroesJOIN THE LUCKY CREWJoin 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 capabilitiesWhen someone is suprised by our strong connection to our childrenWhen someone volunteers for a disabilities organization believing they’re a heroA 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 NOTESFollow @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 LalvaniSPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods Heroes