Rage, Autism & Epilepsy: Why There’s Not Much Progress Around Here
May 6, 2016
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Now Reading: Rage, Autism & Epilepsy: Why There’s Not Much Progress Around Here
May 6, 2016
The king is going thru a mini “spring of rage” 🙁
Back in 2011 when I first started the blog I wrote often about his “summer of rage”. Well, he’s made a bit of a triumphant return to his raging days…and he’s taking it out most on his teachers, therapists, and aides at his school…
I’ve written before that he normally has a rough last couple of months of each school year where his bad behaviors escalate… but this time it seems a little bit different, it seems like he can’t control it…
He’ll be doing fine and then it’s like somebody flips a switch and he just becomes a bit of a wacko… biting, kicking, spitting usually with a smile on his face and very often with a maniacal laugh which makes it all a bit more infuriating…
Sometimes it seems that his eyes become dilated before these rage episodes**
Unfortunately, there’s really not much we can do about all this. And this is a case where managing his epilepsy trumps managing his autism.
As I mentioned a week back or so, he’s still having one BIG, SCARY seizure a week, so we have to focus most of our energies there. We had a neurologist appointment 2 weeks back and they increased one of his meds. And maybe that increase is causing the rages?
But not having seizures is more important that all of it. I wrote a post way back in 2012 called “I’ll Take Aggression Over Seizures Any Day” and I still feel that way. It sucks that we have to have one or the other… but sometimes it feels like that is the case…
Again, we have no f$$king clue what’s causing the rages. Other times in the past, it was more obvious that he was hitting or biting to get out of doing something. However, as I hinted at earlier, with these ones recently it almost feels like he’s having an out of body experience. He’ll be cuddling with you one minute and then that switch will flip and he’ll hit you.
I think we just have to ride it out and hope that it’s just a phase and hope that his teachers, therapists, and aides remember the sweet boy they had for the first 7 months of the school year. Hopefully that buys him some good will. 🙂
Seriously, I have no doubts his school staff can handle him and love him, but when he gets on one of his rages it can be tough so I’m worried for them a bit because he’s gotten a lot bigger and stronger over the past few months (thanks to peanut butter!) 🙂
What really sucks about all this is that it prevents him from making any real progress at school (or at home)… and this has been the case for quite a few years now, but lately I’d say it’s mostly because of the Epilepsy.
Over the past few years his time at school has been filled with lots of sleeping due to seizures or seizure meds making him sleepy.
And now we are finally at a stretch where he is not napping as much at school, but instead he is raging.
And both sleep and raging prevent any significant “school work” from happening…
When he is sleeping he is obviously missing school work and the routine of the day… and when he is raging focus and attention to any tasks is difficult for him and they need 2 staff members on him for huge chunks of the day to protect the other kids.
So when I see the IEP Goals each year, and then I see how he barely met any of them, I know what to blame… Sleep and rages… There’s just not enough hours in the day sometimes when you’ve got sleep and/or rages to contend with…
And again, these rage episodes seem to happen more at school, and when he is not raging or sleeping he is himself and is pretty happy go lucky… but he still sleeps too much.
Anyway, that’s all I got. I just wanted to update you all on what is going on with his majesty because I’ve been re-posting a lot of old blog posts lately, but haven’t given you any new updates on the king…
That’s it. THE END
** = I hesitated to write that sentence about his pupils being dilated because I know I’m gonna get a ton of comments with explanations for what that means and I know some will scare the sh&t out of me. Just know that, of course, I’ve googled it and I know all of the things that it could mean. So please think before you comment about that and please don’t scare the sh&t out of me! 🙂
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” :-).