(originally written & published on September 23, 2016)
I've been meaning to write this post for a long time now. It's about the strange balance and the weird trade-offs you have to make in your mind as a parent of a kid with both autism and epilepsy.
The idea for this post came about three weeks ago when we were on vacation in Lake George New York.
I think it was the last day of our week long vacation and we were eating breakfast at this restaurant that we have been to three or four times over the week.
And my son was starting to act out in the restaurant.
Let me take a step back and say that as autism parents for 13 years now my wife and I are well trained at restaurant situations.
So much so that as the hostess leads us to our table at any restaurant both of us already doing calculations in our head as to which side would be the best side for the king to sit on, who should sit next to him, do we need to move all of the ketchup and salt & pepper shakers off the table, should we ask for a booth instead of the table they put us at, etc. etc.
At this restaurant, on this particular day, they gave us a pretty perfect table for our situation. :-) A booth where there was no booth behind his Majesty so there was nobody for him to mess with or potentially disturb.
However, there was a couple of paintings on the wall to the Kings right.
And throughout the breakfast between bites of pancakes and bacon his Majesty was trying to happily take the paintings off the wall.
And wifey and I were trying to redirect him back to his chocolate milk and his shows on his iPad.
After maybe the fifth or sixth time of him reaching for the painting wifey said exasperated "dude come on, leave that thing alone!"
And then she stopped and continued by saying
"but it is good to see some of the feisty kid back. It's good to see you with a lot of energy and trying to push mommy and daddy's buttons"
And that right there is the weird balance between autism and epilepsy.
Before epilepsy, when we were dealing dealing with just a kid with autism we basically had a tornado and in our midst.
A high energy kid, bouncing off the walls, who can't sit still, with lots of stims and behaviors, and getting into lots of potentially dangerous behaviors... just your typical flappy autistic kid
That's pretty much what we had before epilepsy came into our lives.
Epilepsy joined the party in 2012 and a lot has changed with my son over the years a bit. In some ways for the better. The king is a lot more mellow since he started having seizures. That could be because a lot of the old-school anti-seizure meds are also mood altering meds that can mellow our kids out which can be a good thing
However, on this vacation in particular what we had was a kid who was having a seizure pretty much every four or five days. A kid who was on two anti-seizure medicines as well as the new addition of medical marijuana.
And so on this vacation we didn't just have a mellow kid, we had a kid who was sleeping way too much... and when he was awake, I hate to admit it but he was a little "zombie like". And I know this won't be popular but I blame the medical marijuana for that.
And when your kid is sleeping 12 hours a night, and then still napping two hours a day, and then kind of "zombie like" when he is awake you long for the days when he's pulling paintings off the walls in a restaurant.
And so towards the middle of that vacation we made an executive decision to pull the plug on the medical marijuana. (Holy crap we still haven't told his doctor about that yet!)
And slowly but surely throughout that week he got some of his energy level back and we got some of that fesisty kid came back and some of his bad behaviors back too.
Yay for bad behaviors!
And by the end of the week he was back to trying to pull paintings off of the walls!
That's about all I've got for this one. This is just a short blog post that's been rolling around in my head since wifey made that comment about 3 weeks back!
I've written a little about this before, about the weird trade offs you have to make in your mind as a special needs parent.
And how you sometimes long for the crazy days, especially if the crazy days was typical behavior for your kid and showed more of your kid's personality, or if during those crazy days your kid was healthier.
Anyway, that's all I've got right now.
And since school started we've got an even better balance going right now. He's awake a lot more, he's got good energy levels, and he's very happy, and he's only having a seizure every 7-8 days. Yay, progress!
So right now we're not wishing for a return of the feisty kid with bad behaviors... but knowing the king's ups & downs, when he has another down turn in a few months I'm sure we will be.
I'm sure in a few months we will be saying...
"Pull those paintings off the wall in the restaurant you crazy nut, be feisty... you've got autism, that's what you're supposed to do!"
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