The Short Bus Diaries » Confessions About Life With an Autistic Son

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From the Autism SOP: Getting an EEG

I love my little boy.

So much.

He was UNBELIEVABLY tolerant and patient when he spent 24 hours at the hospital while enduring an overnight EEG test. This poor kid had to walk around with his head wrapped up like a mummy and weighted down by a box of EEG “shtuff”, while his entire body was tethered to a very complicated looking machine that monitored his brain activity and trained a camera on him. My poor boy (and I) were trapped in a hospital room overnight, while this machine mapped his brain waves and I prayed that he didn’t completely lose it.

And he was an angel.

He only tried to leave the room a few times and he did so in this way that was like “hey Mommy. Why don’t we go for a walk? Wouldn’t that be nice?”, rather than in a “I’mma bust out of this joint as fast as I can and yank that damned machine behind me, if that’s what it takes” kind of way. Seriously.

Some parents swell with pride when little Johnny hits a baseball for the first time with his bat, or reads his first book at age five.

I tear up and applaud when my little boy sits on a hospital bed, hooked up like a machine, to a machine, and he looks at me and says “up?” to basically ask permission to stand up and walk around the room.

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Taking your kid in for some sort of EEG and/or sleep study is pretty standard operating procedure for autism families. The numbers vary across studies, but somewhere between 20 and 30% of autistic kids suffer from epilepsy. I am guessing that they won’t find much in the way of seizures happening in my son’ brain, but perhaps they’ll notice some “abnormal brain activity”. Either way, we’re checking the box and getting a baseline of his brain activity.

I had dreaded this day, because my son doesn’t really “play” with toys, nor does he watch TV. I had fully expected to inform the hospital staff, a few hours in, that this whole test was pointless, since we could not control our son and they could therefore not get the data that they needed. I brought a suitcase full of every toy in our house that made noise, and I bought two giant bags of candy and plenty of Cheez-its that I figured I would need in order to buy a least an extra hour or two.

But in the end, I only cracked open the candy at 9pm at night, when I was trying to get him to drink his medicated milk so that he would fall asleep and I could get a few hours of sleep myself on that crappy hospital sofa bed. In the end, my son won the award for one of only two kids on the floor who kept their sensors on their head all night long. WHOO-HOO! I’LL TAKE A VICTORY WHEREVER I CAN GET IT.

The only part of the day where things got a bit dicey was after he woke up from being anesthetized (they knocked him out so that he would not be aware of all of the electronics being glued onto his body). He was pretty pissed off when he woke up, groggy, with a bunch of strange adults staring at him. We had to restrain him briefly, and the hospital staff (bless their hearts) wheeled in a nifty “soothing machine” into the recovery room.  It had mirrors and little ropes that changed colors, and it projected underwater images on the ceiling, while playing music and making “water sounds”. They also gave us these handy blue splints that prevented him from being able to bend his arms and mess with all of the very scientific stuff that was glued to his head. The combination of all of this, along with a sippy cup full of milk (the poor kid was starving at that point) did the trick.

And because I’m never in the photo and a nurse (or maybe it was the anesthesiologist) offered, we took a truly authentic family portrait (photos are out-of-order, because this obviously happened before they wrapped him up).

By the time the morning rolled around, I couldn’t help but smother my boy with kisses and praise him for doing such an unexpectedly great job of staying calm and not removing any of the sensors from his head (or yanking out his IV port). Perhaps he understood that we were there doing something temporary and important, and that, because his Mommy and Daddy were there with him, he was never in danger. I have no idea if the tests will yield any useful data, but in its own way, the entire hospital stay was a sort of test unto itself…at least for me. It’s clear to me that my son has changed recently, and possibly matured and/or reached a level of cognitive understanding of “the rules”. He worked so hard to do what was asked of him and obey all of the requests and limitations placed on him during our stay in the hospital.

I am so very proud of him.

Natalie Blais Hjelsvold - July 26, 2013 - 3:22 pm

Yahooooo!!! Victories, great and small are spectacular!!!!

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