The Longest Shortest Time

EPISODE #117: Coming of Age with Down Syndrome

Sophie has Down syndrome. That means that growing up, she had developmental delays. Still, she’s been mainstreamed in public school—and she can do a lot of the same activities as her peers. She loves drama, cheerleading, and swimming.

Sophie’s 13 now, and recently went through puberty. Which, unlike most middle-schoolers, she embraced wholeheartedly. She loves the body changes, the makeup. She loves having a boyfriend (pictured below, on Halloween).

But Sophie’s mom, Amy, feels torn about Sophie becoming a woman. Because Amy knows that Sophie’s mind will never quite catch up with her body. Amy actually wrote a book about this—and about what it’s been like to raise a daughter with Down Syndrome. It’s called My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome.

Sophie likes to wear matching outfits with Amy

Tune in to hear Amy talk about what it’s like to have a daughter get her period, when she still sucks her thumb. And a few thoughts from Sophie herself!

Sophie with her family

Resources for Raising Kids with Down Syndrome

To keep up on the latest with Amy and Sophie, check out Amy’s blog: Girl in a Party Hat. We especially love this recent post on Amy’s Career Day visit to Sophie’s school.

Amy recommends the books Life as We Know It by Michael Berube and Far from the Tree by Andrew Solomon. The latter is about disability in general, but has a chapter about Down Syndrome.

The Global Down Syndrome Foundation is an organization that supports Down syndrome research, education, and advocacy. They have a great news and community section on their website.

The National Down Syndrome Society has articles and webinars for new and expectant parents of kids with Down syndrome all the way up through puberty, transition times, and adulthood.

Terri Couwenhoven is considered the national expert on puberty and sexuality issues for people with Down syndrome. Check out her workshops and articles.

How did puberty throw YOU for a loop?
This could be your kid’s, or your own! Was there an inopportune time you got your period? A particularly misguided fashion choice? Share below!

Our sponsors for this episode are Aeroflow Breastpumps, Crane & Canopy (code LONGSHORT), Sun Basket, Care.com, and Kopari. Use the promo codes at checkout for a special discount.