Having a Child with Down Syndrome, part LXXIII: Oh Sleep, How I Miss You

Copyright © 2015 Stephen Hawley, all rights reserved.

Last night’s dinner menu said simple, “SURPRISE!”. E and I agreed to go out for dinner with the kids to Chili’s. We bring a gluten-free hamburger bun for Alice and it works out well for everyone. As we arrived, I enjoyed looking at the sky with Stuart and we spotted Venus, Mars, Jupiter, and the moon (and Earth, but that was easy). Dinner went well and the kids were reasonably well-behaved. I wondered idly if it was time to upgrade our standard from “a modicum of civilization” to “a moderate amount of civilization”.

At around 3:15, I woke up from a dream wherein I was searching in vain for a bathroom. This is never a good sign and it makes me wonder why our brain wants 8 hours of sleep, but we don’t get an 8 hour bladder. After successfully finding a bathroom in the waking world, I went back to bed, hoping to drift off. Ha. I should know better. Click. Creeeeeak. Pad, pad, pad. That was Alice getting up with hopes of watching TV. I stepped out of my  bedroom and saw Alice one step downstairs. I pointed towards her room and she shook her head ‘no’. I pointed again and signed, ‘now’. She went back to bed.

Unfortunately, now I was up for the duration. My eyes were too tired to read, but my brain was too awake to sleep. This is the worst. I went through all the code I had been working on on Friday and figured out how to narrow down the cause of the bug I was looking at 10 hours earlier, but my mind still wouldn’t let go. Oh well. I guess Alice is not the only one who perseverates.

Alice didn’t sleep either and this is not good. We can tell when Alice hasn’t had a good night’s sleep because the next day she will be a total space case. Things that she normally does well, she has a great deal of problems with. It took Alice close to an hour to take a shower because of her failing to concentrate on the task at hand. I dreaded going shopping with her when I too 5 reminders for her to come down with a sweatshirt and her usual clipboard, glasses and ID badge.

The shopping went reasonably well. Big Y had fresh roasted turkey breast, which looked like a good lunch. They also had a sale on grape tomatoes, so I got some of those and some small mozzarella balls and some pickled cherry peppers. When I got home, I cut up the turkey and made a nice salad from the tomatoes, cheese, and peppers with some olive oil, herbs, and vinegar. I called everyone for lunch and Alice looked at her plate and said, “seriously, dad? Salad?!” “You don’t need to eat, Alice. Do you want me to take it away?”

Later in the afternoon, she and her brother were watching some TV and Stuart called me saying that Alice was stripping down to nothing. I called her up and she refused, so I gave her the choice of coming up on her own or coming up with a swat on the bottom. She refused again. I went to get her and made it clear that her behavior was not an option. She refused again so now I physically moved her and added a swat on the bottom.

Everyone is tired.

Anyone want to bet that she’s up again at the same time?

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