What I Get Used To When I’m Not There To See It…
October 4, 2014
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Now Reading: What I Get Used To When I’m Not There To See It…
October 4, 2014
It’s a rainy Saturday at 11:13am. Wifey is at a yoga class. And I’m watching the king take his mid-morning nap and I’m on the lookout for any big seizures.
As you all know Kyle has hard to control epilepsy on top of his severe autism. He’s going thru a great phase lately with his behaviors. His autism is better, but his epilepsy has gotten worse.
But with the king there are no clear triggers that we can see. So we let him sleep late, and at around 9:45am I kinda roused him. He’s been asleep for 12 hours now, that’s enough I thought to myself.
So he got up, and was in a pleasant mood. I made him some waffles & bacon and he had a pretty good appetite this morning and ate 2 1/2 waffles and 4 pieces of bacon along with a mug of grape juice.
I thought to myself maybe we’ll bypass the mid-morning seizure then nap. And then a few minutes after breakfast he went into his playroom nook to look at some books.
The next thing I hear a little thud…and there he was having a medium sized seizure, one big enough that his head fell back and thudded against the wall…but small enough that he was still pushing me away when I came over with the VNS Magnet.
But I knew that this would be a big enough seizure to bring on a nap. So less than an hour and a half since he woke up from the night he is back napping.
And the same thing happened last Saturday. And after the 60 minute nap last Saturday he was up and had a great rest of the day.
And the whole point of this post is that the same thing happens at school almost every day. And when I am not there to see it, it makes it less of a big deal in my mind I guess.
Hearing he had a 30-90 minute nap after a few seizures but had a great rest of the day sounds like a pretty good report.
But the same thing happened today, and last Saturday and I’m sitting here feeling like crap because I was there to witness it.
Watching him sleep 12 hours at night, then get up for 90 minutes have breakfast, then a seizure, and then a 30-90 minute nap has a whole different feel to it then getting a 3:30pm after school text from wifey saying “They said he had a few small seizures when he first got in, then he took a 60 minute nap, but they said he did great work the rest of the day”
And I’m not sure which feeling is correct.
We need to solve these seizures we know that…but it’s not easy, and adding a new seizure med into the mix or increasing a dose will only make him sleepier… and removing a med or lowering a dose might bring on more seizures or bigger, longer, scarier middle of the night seizures and we don’t want that either…
And maybe some of his sleep patterns are not because of seizures or meds. On paper he’s only 11, and I don’t write about this much, but he’s going thru puberty early. He’s been sorta diagnosed with “precocious puberty”. So maybe some of the extra sleep can be chalked up to the typical growing pains of a teenage boy.
So for now, we are standing pat. And I need to just accept that this is the way things are for now. And I need to realize that it could be better, but it could be a whole lot worse.
Basically, I should be happy that for the 11-13 hours that he is awake each day he is quite happy and content and calm.
And wifey and I need to take advantage of the 11-13 hours of sleep he’s giving us and she & I need to do fun things during his sleep and/or catch up on some shows that we’ve been meaning to watch…because we know his sleep schedule can change at any time and we can be back to the days when none of us got any sleep…
And then we need to make sure that we show him a real good time during his awake hours…
Like during this nap right now, she’s at a yoga class and I’m writing this blog post while Kyle sleeps on the couch…
And later this afternoon we plan to show him a good time by taking him to “open swim” at the Y.
Wait why am I writing a blog post about autism & epilepsy while he is asleep? That’s not taking advantage of the situation! Wifey is enjoying herself at yoga and I’m writing a blog post?!
Screw that! Blog post over! I’m gonna watch something on HBO GO! Maybe finish Season 2 of “The Newsroom”
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).