Down syndrome and Puberty: Here Goes

posted Thursday September 5th, 2013

Note: Apparently the link in this post to Pink Slip is broken. Here’s one that works for part one and one for part two

Sophie’s bra collection is far more extensive than my own — a fact that will likely make you smile, if you’ve met both of us.

As of this morning when I dropped her off in the carpool lane at school, she had not developed a bit.

That’s fine with me. But Sophie can’t wait. She waves her bare chest in the air, but so far the only thing sticking out is the bump of bone over the scars from two open heart surgeries. The boob thing’s been going on for a while, and she’s been demanding her own stick of deodorant for years (when I run out I always know to look in Sophie’s room — she hoards it).

Then this summer she upped the ante by announcing she had armpit hair.

I held my breath and looked carefully, ultimately announcing (to great protest) that all I could see was shadows. Someday, though, Sophie will get armpit hair. And boobs. And all the rest.

And so when I got an email from a local Down syndrome support group advertising a seminar called, “Bodies, Boundaries and Puberty,” I forwarded it to Ray.

I figured he’d say it was way too soon. Instead he said, “Let’s sign up.”

And so tomorrow at 4, Ray and I will go to a seminar “designed to help parents and/or professionals become more comfortable and confident addressing sexuality issues across a variety of ages and stages.”

Now is where I admit that I have never, once, in 10 years, attended a Down syndrome support group seminar of any kind. Not that I couldn’t have benefitted, I just didn’t feel comfortable. But in this case, the subject matter trumps comfort.

Gulp. Sexuality. From the time she was born, I’ve quipped that I want Sophie to grow up and have great sex. But that was just a quip. Now it’s real life. Well, not for a while. But still. This is the beginning. Almost the beginning.

And we’re one step closer to “Pink Slip.” I’ve mentioned it here before — it’s an instructional video about how to teach a developmentally disabled girl about her period, made and shown in schools several decades ago. Back in my carefree, kid-free, un-P.C. days, a friend found it in a video store in L.A. (this was long before YouTube) and showed it at parties. I always laughed the longest and hardest.

“Remember who never did think ‘Pink Slip’ was funny?” Ray asked the other night.

So my husband (then future husband) was (okay, is) far more evolved. In any case, now it’s time for karmic payback, since Part Two of the sexuality seminar is a mother/daughter workshop on Saturday “designed to help pre-adolescent students who experience cognitive disabilities learn about how their bodies will grow and change during puberty and how to manage these changes.”

So forgive my black mood this week. Yes, I’m struggling to finish “Best of Phoenix” — the bane of my professional existence and always completed in the hot end days of summer (forecast for today: 109 degrees) — and trying to figure out what the “D” in math on Sophie’s mid-quarter “progress report” means and trying to avoid carbs while editing a food blog.

But really, what’s got me down is Down — and the next chapter.

“What are we doing this weekend?” Annabelle asked when I picked her up from school yesterday.

I ticked off the events — First Friday art walk, dance class, Sunday dinner with my parents. “Oh, and Sophie and I are going to a seminar about Down syndrome and puberty on Saturday,” I said.

“Why?” Annabelle asked. “Is puberty different when you have Down syndrome?”

Good question, I thought, wondering if she imagined green menstrual fluid and odd-shaped boobs.

“No,” I said. “It’s just that it’ll be harder to explain it to her than it was to you.”

“Yeah,” Annabelle said. “Boobs and armpit hair are a lot easier to understand than periods.”

Yeah. I’m thinking I might have to have “Pink Slip” on hand as a back-up plan.

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Tags: Filed under: Down syndrome by Amysilverman

4 Responses to “Down syndrome and Puberty: Here Goes”

  1. You can’t believe how relieved I am to know that I am not the only person who viewed that film clip at the “showing” of a yukking crowd. A former roommate owned the movie and while I don’t remember laughing, per se, I do remember gawking and thinking the video was “so weird.” I have felt guilty about that for 6+ years. Also…I still can’t believe you have never gone to any support groups. I must be a joiner!!! And…full report, please!

  2. Right here with you – only the other sex. C is proud of his 12 or so pubic hairs sprouted this summer, but all I can think about is how we are going to explain certain other realities of adolescent boyhood. Let me know if you hear anything worthwhile about THAT.

  3. The link on your web page is broken. I found the video on Youtube. The link is (part 1) and (part 2). I loved your interview on “This American Life”. As bad as the videos are, someone tried very hard to explain something very important.

  4. Just listened to your wonderful interview on Saturday’s This American Life. I will be posting to the Dot Girl Facebook page today. Best of luck as you help Sophie navigate puberty and periods.

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