Having a Child with Down Syndrome, Part CX: Call It Sleep

For Thanksgiving, we went to visit family. This involved getting packed Wednesday afternoon and taking off on a 3 hour drive. Both kids were super excited. I set up Alice for bed in her room, which had a TV in it. I made it clear that when she woke up, she could read books or play with her iPad, but no TV. Sure enough, Thursday morning and 5:00, she turns on the TV very loud. I got myself in there real fast and turned it off. “Daddy, but why?” I explained and said she could play with her iPad. I went back to bed. “Daaaadddy! Daaaadddy!” Great. I grab my book and head into her room. “I need you here.” Really. I stayed and read while she went back to sleep for a while, but the damage was done to her sleep schedule.

The rest of the day, Alice was not her best (nor was I, but I’m the adult) and I spent most of the Thanksgiving intervening in Alice’s habits which all percolated up to the surface: grabbing things impulsively, touching people without their consent, perseverating, and so on. Guh. It was not pleasant.


Friday morning, Alice slept well and when she did get up, she kept herself constructively entertained. Since nobody else was quite ready, I decided to reward her by taking her out to Pie In The Sky, a nice little coffee shop in Wood’s Hole. Alice had egg and cheese on gluten-free toast. I had a bagel with smoked salmon and cream cheese. Over and over, I reminded her that she was getting a reward for being nice and considerate and doing the right thing.

This morning, up too early, I caught her getting into something she knew was not OK, so back to bed. A few minutes later, “Daaaddddy! Oh Daaaadddy!” I read her the riot act and she went back to bed and to sleep, but again, the damage was done. Another day of suboptimal behavior. For both of us. So much for the positive reinforcement the day before.

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