Coming of Age with Down Syndrome


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.

17 thoughts on “EPISODE #117: Coming of Age with Down Syndrome

  1. I loved hearing Amy’s take and appreciate her honesty about her mixed emotions, which was peppered along the entire podcast. You can hear the push and pull of Amy wanting everything for her daughter. I loved hearing about Sophie’s headstrong, yet self-aware, sense of self. I wish everyone could be that intentionally honest. Thank you for sharing.

  2. I loved this one! What a wonderful, illuminating piece. Sophie sounds like a total badass and I wish I’d had some of her confidence and spirit when I was in junior high. While I’ve heard broad generalizations before about strengths that people with Down Syndrome possess, I’ve never heard anyone highlight the kinds of strengths that seem to give Sophie super powers in that most challenging of stages: eighth grade. I love Amy’s honesty and I look forward to checking out her book. Another writer who blogs about raising a daughter with Down Syndrome i s Kelle Hampton, and I really enjoy her writing (kellehampton.com). It’s also worth mentioning Ruby’s Rainbow, which is a wonderful organization that raises money to support young adults with Down Syndrome achieve their dreams of attending college. https://rubysrainbow.org/

  3. Hi
    Just listened to the episode. Loved it. Wanted to mention my period story. But before that, growing up in the seventies(I’m in my early fifties) my mom was a special ed teacher. She taught teens and young adults with various needs. Many were Down’s syndrome. Looking back, I remember the amount of unconditional love they gave my mom, and myself when I would come to her school. It was overwhelming at the time. I wasn’t used to such overt emotion. We weren’t that kind of family. As a parent, I strive for that level of expression.

    On to my period story. When I got my period at age 12, my mom gave me a box of pads and a belt. Although stick-on pads and tampons were available , she was still using the belt system.
    I probably used it once, and then after some thought told my mother that there are pads out there that magically stick to your underwear! So as a team we ventured into the 20th century. About a year later, I discovered tampons-which I dubbed the best invention ever. I took my mothers hand as we ventured once again into uncharted territory. Life would never be the same.

  4. Amy, Sophie and Hillary, thank you so much for sharing. The week this episode posted, I received the results of an abnormal prenatal blood test/screen, indicating my unborn baby is at high risk of having Down Syndrome. We are waiting on the results of a genetic test now, but I know we will be fine whatever happens, and we will find the blessings among the challenges (as we do with any child). This episode really lifted my spirits.

  5. As a father of a Down Syndrome daughter, who is rapidly approaching puberty, I REALLY needed to listen to this episode. Amy, I commend you for not pulling punches…Sophie (as my own daughter, Philippa) is totally fearless in going after what she wants…never thinking about what others might construe about her, but grabbing what she’s capable of and showing people that she’s not someone to be trifled with.
    I DO worry about her future (and people taking advantage), it just seems amplified in the case of a ‘Downie’ (still not sure if that could be considered a slight…probably…). My major wonder is how she views herself compared to others not so afflicted…I honestly think she doesn’t give a shit one way or the other, and just gets on with living her life…
    Thanks for sharing!!


  6. Amy, thank you for sharing your story! These are the stories I love to hear.

    As to puberty for me, my first period occurred the day before my grandma’s, my mom’s mom, funeral. This was the first big loss in my young life. Did I mention that my mom had had a full hysterectomy years prior so we had NO personal products in the house? This meant that while my mom was dealing with the loss of my grandma, my dad and I were going to the store to try to figure out what I needed. Needless to say, I may or may not have ended up with Depends for my first go around.

  7. This is my favorite podcast episode ever! Your daughter, Sophie, is wonderful and I was so inspired and touched to hear your story. Thank you!

  8. Loved this episode!

    I forgot to carry pads with me to middle school (I still do sometimes!). One day the red menace came and streaked the back of my shorts as well as my underwear. I had no back up panties or shorts. Girls kept coming up to me to tell me to go to the nurse’s office because she had pads available, but I just shook my head, unable to use words to explain it wouldn’t help the shorts situation. The end of school didn’t help things either because I had volleyball tryouts after school. Not liking to change in front of people meant I had not brought a change of clothes, thinking I could just wear what i’d worn to school. That year was also the one and only year a boy had decided to try out for the team. The coach asked us to do a stretch that involved lying on our backs with our legs in the air. I was absolutely mortified, but refused to ask for any special consideration and just did it. I remember coming down out of the stretch and the boy staring at me with such horror and confusion on his face.

  9. This beautiful story was so well-timed for our family. The episode came out only a day after we received a screening result that our baby was at high-risk for Down Syndrome, and we have recently had this diagnosis confirmed. It sounds like I will really need Amy’s book in the coming months, and I’m so thankful for LST posting other resources. I am also feeling encouraged that perhaps our little boy will one day be as fearless and badass as Sophie.

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