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posted Wednesday February 3rd, 2016


Yesterday I ran into the vice principal at Sophie’s middle school. I adore this woman, who ushered my tiny girl into cheerleading and is one of many who look out for her every day. After we had such an incredible experience in elementary school, I never thought I’d get comfortable with these people at this big, scary junior high. But they love Sophie and I love them.

“I’m so excited!” the vice principal told me. “Sophie’s gonna let me do her hair the Friday before Valentine’s Day!”

She explained that she has already bought fancy hair ties and ribbons, then asked, all casual, “Can you send the brush and detangler to school with her that day?”

I smiled and winced, picturing Sophie’s hair that morning when I dropped her at school — snarled, all over the place, a “style” that could (very) kindly be called bed head.

I love the bed head look.

It’s pretty much my only fashion statement and the day I realized 20 plus years ago that my wavy/curly hair looks best if I don’t touch it was a great day. No more curling irons, blow dryers and cowlicks. Wash and wear, with the right product (that last part is key). I haven’t brushed my hair on a regular basis in years; currently I haven’t touched it in months.

Ray doesn’t brush his hair, either. Annabelle, who has a better version of my hair, pretty much shakes hers after the shower  – and goes.

Sophie’s hair is different, fine and stick-straight. It’s gorgeous hair, hair that needs to be brushed all the time.

As you might imagine, she prefers the dad/mom/Annabelle method. Hence, the near-dreadlocks.

As I sit here in the living room, typing, the house is still quiet. I need to get up and make coffee, let the dogs out, urge the others out of bed. Annabelle and Ray won’t need much coaxing, and they’ll be out the door soon. Sophie will require cajoling, begging, bribing — her Carnation Instant Breakfast shake and thyroid pill delivered in bed and a toasted bagel with butter and cranberry juice at the coffee table; then frequent sweetly worded reminders (then yelling) to get her to put on the clothes I put out for her. Then more yelling to get her to brush her teeth, to find her ID and glasses, to quit digging for more mechanical pencils (she sneaks and chews the erasers), and to stop switching out backpacks as we are walking out the door with seconds to spare.

More often than not, I catch a glimpse of the crazy-messy back of Sophie’s head as she’s climbing out of the car and that’s the first time I realize I haven’t even tried to make her brush her hair.

It’s a big deal. It’s important that Sophie look her best (that we all do, but particularly a kid with special needs, who has enough to deal with already) and once again, I’ve failed her.

But her head is extra-sensitive (thanks, Down syndrome) and more than that, it’s just one more thing she has to endure that the rest of us in the house don’t.

The vice principal grinned. She has a vision of making tiny buns all over Sophie’s head, shaped like a heart for Valentine’s Day. I grinned back, thinking, “Good luck with that.”

All hair advice is welcome. I’ve tried everything from olive oil to fancy brushes to threats of haircuts and bribes. Sophie insists that she wants her hair to look like mine, that I don’t brush it and why should she. It’s hard to argue with the logic. And hey, it’s a nice compliment.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit and here’s a book trailer.

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6 Responses to “Tangled”

  1. Your honesty is disarming. Your wit is priceless. Your enormous heart and love for your family keep you focused on life’s priorities. You inspire me, Amy! And, once again, you started my day with a smile!!

  2. What a lovely piece. Always nice to hear that other parents struggle with the same feelings of failing our kids. It takes a Village.

  3. I didn’t realize head sensitivity was a Ds Thing! My poor kiddo has the hardest time with haircuts (which I make him do regardless). Anyway, my daughter also has fine, straight hair and the absolute best thing I did was buy her a satin pillowcase. It has totally eliminated the back of the head rat’s nest in the morning. Good luck…and maybe tell the VP she might want to have a cute headband as back up ;)

  4. This Vice Principal sounds Awesome. My sister had issues with her hair near that age or older. She used straighteners and had no luck. Tell the VP that she is Awesome for doing this for Sophie. Perhaps everybody has issues with hair at that age.

  5. I’m a head shaker too but Kenz with her CS is sporting a mohawk at best – one that defies hair clips . .Great how all these syndromes come with their own hair variation . . .one more huh!) .Maybe it’s a gift . .these kids are just soooooo wondrous that the world SHOULD take note. Truly the magic is in the eyes and grin . I say let her just shake it . . brushes are over rated but I’m all for those colored ribbons . .shes gorgeous in every way! xxx sam

  6. I really like the “wet” brush. You can get it at target, walmart, etc. The detangling one has made combing my long, straight, perpetually tangled hair so much easier.

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.


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