Are we all ready for this snow to melt, or what?
My youngest certainly has spring fever. Once it warms up outside, you may see us out and about around Bangor or Brewer quite a bit but during the winter, we hibernate. Every year, when the temperature starts to go up and it gets a bit brighter outside, my Bear gets restless.
Meet Sarah, my beautiful 11 year-old daughter. She has a rare genetic disorder called Ring Chromosome 22.
Up until about spring forward time, Sarahbear was sleeping peacefully through the night. I don’t know if it’s the time change, the brighter skies, the change in air pressure or what it is that throws her sleep pattern out of whack, but it is definitely seasonal.
Lately she’s up at least once in the middle of the night, which is to be expected with toilet training, but I didn’t find out until I got up this morning that she had been up most of the night.
My much-more-patient-than-I-am husband had been up with Sarah off and on since about 2:30 am.
When Sarah gets up, she has no awareness that it’s the middle of the night and she should be courteous to everyone else in the house. She doesn’t know how to tiptoe or whisper. She may throw the door open and stomp down the hall giggling or sometimes when she gets up, she just pushes her curtain to the side and pounds on her window. Other times she sits in her bed clapping her hands and squealing.
Last night, I slept through it all.
I had a quiz, exam and part of a project due by midnight so I didn’t turn in until I got all of that done. Then I listened to some music on YouTube to unwind a bit before playing 6-Hour Sleep Music for Easy Lucid Dreaming. Tell you what, that stuff works. I’m not sure about the lucid dreaming, but I didn’t wake up once last night. My other daughter slept like a rock too, but she’s a teenager and I’m pretty sure she’d sleep through the apocalypse.
My husband is a saint for letting me sleep, considering he had to work the 11-8 shift today. He did just have the whole week off though, so there is that. He went back to bed for a bit when I got up and took over,but I don’t think he got much more rest.
If you see a man in khakis and a blue button-down shirt sleepwalking around the Wal-Maht today, his name tag probably says “Ronald”. Please be nice to him. He had a rough night.
Sarah is beginning to get restless during the day, too. And this is the time of year she tends to develop any combination of obsessions that last for weeks, even months. In past years, she has had times when she would do nothing but walk. Or jump on her trampoline. Or bang her head on the walls and windows. Smack her face. Walk circles around the kitchen table and knock chairs over. Throw anything in reach. Smack people. We haven’t had to deal with anything quite like this so far this year.
Sarah’s mouthing things a lot right now. Stuffed animals, books, “chewys”, blankets, shoelaces. This morning, completely out of the blue, she grabbed my coffee cup, chucked it across the kitchen. She doesn’t usually mess with our coffee cups. She always has access to a cup of her own and she knows the difference. The few times she’s dumped coffee, it has been completely by accident trying to reach for something else. This morning, she was deliberate and she laughed.
I realize none of this is newsworthy. I’m not posting an event, a review, or political commentary. This is just a slice of life of having a family member with special needs. If you have a child like Sarah and can relate, maybe you’ll feel a little less alone. If you know someone who has a child like her but you don’t necessarily see their day to day struggles, here is your inside scoop. Having a child with special needs can be isolating. We can’t wait for sunshine and long walks.
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