Now Reading: Why We're Stuck In On a Sat Afternoon — "you're not allowed to have any fun at home" :)

Why We're Stuck In On a Sat Afternoon — "you're not allowed to have any fun at home" :)

It’s so frustrating. It’s Saturday at 2:41pm. The weather is gorgeous and we are stuck in the house with his majesty. 

Why, you ask?
Bad behavior?  Nope
Seizure activity?  Not that we saw…
For me to tell you the reason that we are home you need some backstory 
So this morning Kyle had his regular Saturday schedule. Special needs swim at 10:30 and music therapy at noon. 
During music therapy he had a pretty amazing moment. It’s a 40 minute session. According to his therapists he had a great session for the first 35 minutes then got up and said “Ka ka” and headed towards the door. 
They came out and told us that and I said maybe he had to go “kaki”
(that’s what we call poop)
And sure enough he had to poop. 
“Good job getting your point across buddy!”
After music therapy we went to a diner to eat and then after we were going to do something to take advantage of this beautiful weather (either visit our friends 75 minutes away or maybe go to a more local beach)
But towards the end of the meal Kyle looks exhausted and Wifey says “damn… The same thing happened last Saturday. After music he shows signs of needing a nap and we get stuck in all afternoon…”
Then the desert part of his kids meal came (chocolate ice cream) and he perked up again and seemed more awake. 
And Wifey then said “if only you could tell us what you want to do…Kyle listen to mom, do you want to go out now and do something fun outdoors or do you want to go home and take a nap”
And with that he put his head on my lap in the booth and tried to curl up. 
“well he answered your question” I said 
So we came home. 
As we’re walking in the house Wifey sys
“Ok buddy, you look tired, take a nap right now and as soon as you wake up we’ll go out and do something fun in this weather. 
We walk in the house and he immediately starts bouncing on his big green ball and wifey says “oh no you’re not allowed to have any fun at home”
But now an hour has gone by and he keeps threatening to nap but then he’s up and bouncing  and watching tv and we are stuck in…
And guess who’s asleep? Wifey!
And the reason why we don’t just force the issue and bring him out even if he’s tired…
Well if he didn’t have epilepsy on top of his autism we probably would. 
But with epilepsy the naps could be a sign that he had a teeny seizure that we didn’t see…
and also some of the seizure meds can make him tired…
and then some epileptic people are prone to have more seizures when they are overtired and “denied” sleep…
So that’s a vicious trifecta. 
So we are trapped in our house on a gorgeous Saturday afternoon…
But there was two nice positives with the “kaka” and telling us what he wanted to do at the diner. 
So on this day I won’t say that autism sucks I’ll instead say that epilepsy sucks!!

Written by

Frank 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” :-).

Conversation (2)


Leave a Reply

Your email address will not be published. Required fields are marked *

2 People Replies to “Why We're Stuck In On a Sat Afternoon — "you're not allowed to have any fun at home" :)”

  1. Gotta celebrate what you can! 😉

  2. Same here, just trying to make the best of it!