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When Your Child is Nonverbal and You Don’t Know What’s Going On

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As I type this, I’m currently looking at a monitor of my 8-year-old daughter in her bed sleeping. It’s 12:48pm on a Wednesday. She was supposed to be in her 3rd grade classroom about to eat lunch. She has her clothes on, her bow is tied, her shoes on her feet, and her backpack is ready.

At 7:00 this morning the day began as normal. I administered meds and fed her breakfast through her feeding tube, packed her lunch box, and got her dressed. Around the time I was lifting her into her wheelchair to head to the car for our weekly feeding therapy appointment, she finally woke up. Hmm… She was groggy-eyed but aware as we rolled down the highway. But then at the appointment she became more and more tired. Hmm, again. On our drive from the clinic to school, I kept checking the rear-view mirror to see her head hanging lower and lower. I turned on the radio, and from her wheelchair in the second row, I heard a few giggles as Lizzo sang, “I’m like chardonnay, get better over time…” (good sign) - but, after that- she was asleep.

Since it doesn’t feel like a good parenting move to roll your child into school snoring, I drove home and got her back into bed.

3 hours and 20 minutes later, she’s still snoozing and I’m left wondering: is it because she’s sick? Is it because she didn’t sleep well and I somehow missed it on the monitor? Is it because her seizure meds and sleeping meds are suddenly too much? Is it because, is it because, is it because…

All parents wonder about their children, but when your child has profound special needs the "what if’s" can be an endless cycle. Add in the nonverbal component and the average stomach ache can have you wondering if a tooth is coming in, if something is making her sad, or if there’s a reason you need to rush to the ER.

As her mama, I’ve learned to read her cues. This cry means tired. This grunt means boredom. This stretch means reflux. This, this, this. And for the second day in a row I’m scanning my memory for clues, while checking my gut like it’s my job. Because it is.

Tomorrow will likely bring another day at school, a smaller nap than today, a good evening ride on her favorite horse, and a decent night’s sleep. I hope.

But today I’m twiddling my thumbs wondering if all is well. And secretly wishing I could be in the car headed to get a vanilla latte. Maybe I could put her in her chair asleep. No I won’t. But maybe I could. I won’t.



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