294. Why Down Syndrome Isn't Something to "Cure"

04/08/25 • 33 min

When we saw this headline, “CRISPR Snips Away Extra Chromosomes, Offering New Hope for Down Syndrome Treatment,” we knew we had to discuss this article together. So that’s what we’re doing today. Here’s what we’re covering in this episode:

The ethics of gene editing - What about other conditions with serious life-threatening effects?
Why do some people assume that we need to “cure” Down syndrome?
What would we do to alleviate some of the medical challenges in the DS community?
The problem with not including disabled people in this conversation

We are really digging deep today! And we invite you to read the article (linked here) and join us for this important conversation.

SHOW NOTES

Read CRISPR Snips Away Extra Chromosomes, Offering New Hope for Down Syndrome Treatment

Keep this convo going with these past episodes: 161. Let’s Talk About Abortion & Disability; 117. Dignity Beyond Accomplishment; 99. The Last Children of Down Syndrome SHOUT OUT: Follow @amyjuliabecker for thoughtful discussions on hard topics in the DS community.

SPONSORS

Learn more about Jack’s Basket.
Learn more about Enable Special Needs Planning.

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!

The ethics of gene editing - What about other conditions with serious life-threatening effects?
Why do some people assume that we need to “cure” Down syndrome?
What would we do to alleviate some of the medical challenges in the DS community?
The problem with not including disabled people in this conversation

We are really digging deep today! And we invite you to read the article (linked here) and join us for this important conversation.

SHOW NOTES

Read CRISPR Snips Away Extra Chromosomes, Offering New Hope for Down Syndrome Treatment

SPONSORS

Learn more about Jack’s Basket.
Learn more about Enable Special Needs Planning.

Previous Episode

293. Potty Training with a Dual Diagnosis

Raise your hand if the thought (or maybe even the memory) of potty training gives you anxiety! This parenting milestone sure brings up a lot of feelings, especially for those of us in the disability community. Here’s what we’re chatting about today:

Micha’s potty training journey (including some behind-the-scenes voice notes and training tips!)
The impact of a dual diagnosis (Down syndrome and autism) on potty training
Dealing with internalized ableism
PLUS: WHY do we actually want certain things for our child? Is it for their safety or for societal expectations?

And also, happy Autism Acceptance Month! Lets celebrate that and remember: learning new things can take a long time. And that’s okay.

SHOW NOTES

Visit successfulpottytraining.net to learn more about Ashley Hickey and her potty training methods
Listen to ep 62. Micha & Ace’s Dual Diagnosis Journey
SHOUT OUT: Follow @learnplaythrive on instagram for neurodiversity affirming therapy strategies!

SPONSORS

- Learn more about Jack’s Basket.
- Learn more about Enable Special Needs Planning.
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!

Next Episode

295. How can I help my child with a disability sleep better?

How many nights per week would you say your child (with or without a diagnosis) sleeps well? We asked our audience and discovered that sleep is a struggle for a LOT of us! So if you’re feeling like you’ve already tried all the online hacks but your child still wakes you up at the same time each night, this episode might have a new tip for you! Here’s what we’re covering today:

What’s the biggest sleep challenge for our kids with Down syndrome? And our kids with a dual diagnosis of DS and autism?
Micha’s sleep journey with her son Ace... Does a gluten-free, dairy-free, additive-free diet actually work? What medications have or have not been effective? What is a sensory diet and does it really help? How has an ADHD diagnosis affected Ace and his sleep?
Audience input! We’ve crowdsourced the best tips from all of you! Learn how other parents have changed their children's rooms and bedtime routines to promote better sleep.

But before we dive into sleep, we’re chatting briefly about the change from Autism Awareness Month to Autism Acceptance Month + the importance of centering Autistic voices in this conversation. For now, wherever you’re at in your sleep journey, we hope this episode helps! You’re not alone out there!

SHOW NOTES

SHOUT OUT: Follow Nicole Adler ( @nicole_for_love), a speaker and advocate for the disability and LGBTQ communities.

SPONSORS

Learn more about Jack’s Basket.
Learn more about Enable Special Needs Planning.

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!