Thursday, September 11, 2014

A Day in the Life--Seriously, Never-ending

6 a.m comes early when you've spent most of the night in theER. And when you're in your forties, serious lack of sleep leads not to the giddiness of your youth, but to a strong feeling of nausea....and of really, really, really wanting to go back to bed. Of course, past 40, the day after not sleeping isn't the worst. It's the two weeks after the day after not sleeping that drag on in torturous exhaustion.

The day after Ren's surgery, I was up at 6, kids fed, lunches packed, and non-asthmatic ones on the bus by 7:35. To work by 8, and all was well until about 3:15 when I got another text from my mom: "Ren's surgery nurse called for follow-up. Concerned about symptoms. Said to call surgeon."

Sigh. The surgeon's office closes at four, so I called right away. After a lengthy game of phone tag, I finally talked to his nurse. 

She promptly sent us to the ER.

After five hours of testing, with very recently post-op Ren resting uncomfortably on a mattress no thicker than three pieces of stacked cardboard, we were sent back home. The worrisome symptoms--his change in voice and shallow breathing--were, get this, A DIRECT RESULT OF HAVING ANTERIOR CERVICAL FUSION SURGERY (gosh, that would've been my diagnosis, too).

We got home at 9 pm. By that time the kids were in bed and I'd spent most of my non-working hours over the previous two days at the hospital with somebody or the other. 

When I sat down at my computer to catch up on work, the first e-mail I opened was from Sky's teacher:
I'm writing to let you know that Sky has had 2 difficult days. I am seeing behaviors that were not exhibited during the first weeks of the school year.  He has been interrupting in class very frequently, has been off task (an example is coloring his pencil with his Sharpie marker) during discussions and worktime, and has not been making the good choices that I know he can.....
This, you guys. This is what stinks about having a kid on the spectrum. When things fall apart at home, they fall apart for my kid with autism, too. Every. Single. Time. 

It's simultaneously heartbreaking and frustrating. Because just at that moment when stuff hits the fan and I really need him to keep it together and maybe even help his younger sibs chill out, Sky will do exactly 100% the opposite. And, not because he wants to cause trouble or because he is seeks attention, but because he Doesn't. Know. What. Else. to do. When unexpected things happen at home, it triggers a cascade of inappropriate behaviors and bad choices for Sky that can take days to undo.

Remember this?

Sky slipped this under my door on the morning of the third day. He knows when he can't keep it together (which is HUGE progress, by the way). He just doesn't quite know what to do about it. Disruptions, big or small, lead to a ripple effect that only intensifies the further it moves away from the point of disturbance.

Sky's teacher is fantastic this year, and his first couple of weeks were the best he's ever had, so I know everything will be okay in the end. I just hate, hate, hate it when we can't keep life stable enough for him. I guess we can only keep hoping that eventually he'll move beyond "I feel like this" to something slightly more proactive.

On the bright side, though: it's been six whole days since I had to take someone to the hospital.

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