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What I Get Used To When I’m Not There To See It…

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.

Kyle had the VNS Surgery in August of 2013 and for the first 6-7 months it drastically reduced the amount of seizures he had, but then around March they started to creep back.
And now not a day goes by when he doesn’t have a few small ones.  So he’s on more anti seizure meds.  And those meds affect his appetite and make him sleepy.  Some of the seizures also make him sleepy.
So throughout his summer school and now throughout the first few weeks of regular school he’s been in a pattern of us waking him up around 7:30am and then him taking a mid morning nap…whether the naps are seizure induced or because of the meds isn’t always clear.
But it’s just funny what you get used to and what you are ok with when you are not their to witness it.
Every day for the past few weeks I’d text the wife to check in and see how Kyle’s school day was.  And every afternoon the report was pretty much the same…  
Basically the gist each school day was…
he had a few small seizures that they saw, took a 30-90 minute nap at school, but was pleasant & cooperative the rest of the day, and is doing good work when awake…
And I would be pretty fine with these reports…  Sucks about the seizures, but a 30-90 minute nap aint so bad and glad to hear he was so cooperative and doing good work…
And all week this week when I got home he was a DELIGHT…  very happy & related & engaged & not holding his breath as much!
So since it’s a Saturday and he doesn’t have any activities until the afternoon we let him sleep later this morning (a) because why not and (b) because there’s a part of us that thinks that maybe if he sleeps later  he won’t have his morning seizures and won’t need his late morning nap.  You see in some people with epilepsy being awaken before they are prepared to get up can be a trigger for seizures.

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 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” :-).

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9 People Replies to “What I Get Used To When I’m Not There To See It…”

  1. Anonymous

    It's funny in a way that it's an impulse to talk about what your are dealing with and then realize hay I have time for myself. I have to take advantage of it. No matter how little of time to yourself you have. But it's very important not to forget you time…With that said…..I hope you enjoyed time to yourself after this post.

  2. Anonymous

    Dear Anonymous. I work with many students with ASD and seizure disorder and what you are describing is illegal. I am sorry your district has done this.

    Have you had your child's neurologist or pediatrician write a note that your child requires a daily nap or a nap post seizure? It should then be added to his health care plan. Then it would become an accomodation that can be added to his iep. If the nap gives him the break he needs to continue with his day, then they absolutely should staff and accommodate it. Otherwise the school is not designing an appropriate individualized education plan. That would be like requiring the parent to take a child home for her insulin shot everyday. Absurd.

    I dont know state you are in but you could consider filing a complaint (an email, letter, or phone call) with the office of civil rights in your state if your child can't access their education because of his disability.

    Good luck.

  3. I'm sure you've looked into it, but just wanted to mention that the Ketogenic diet worked wonders for our son's seizures. He was having 15-30 tonic seizures a day when we started the diet – down to 2/day by the end of the first week, and after the first month, they were gone! Been on it for about 2.5 years now and still seizure free on just the diet (after failing many meds). The first month is VERY tough (major metabolic change as their bodies switch from burning carbs to burning fats!) Our son is severely delayed overall, but we're happy for the seizure control! Then again….the Keto diet is extremely low on carbs, so that might not bee such a good idea with Kyle's popcorn addiction! 🙂

  4. Anonymous

    They allow him to sleep ! every time my son fall asleep I get a call to pick him up. They don't have the staff to watch him sleep while they go to specials. Try to fight it but they won saying he should sleep at home not school plus they cannot pay staff for babysitting a student to sleep.

    1. Anonymous

      Agree. They CANNOT send him home for that

    2. illegal! Get an advocate and call an IEP meeting. Any behavior (naps included) that is a result of the disability cannot be punished and a child certainly is not to be sent home!!

  5. I know this wasn't the point of this post, but it's also amazing what you can get used to when you ARE there to see it. It's interesting to me sometimes how I'm so used to my son and our routine that it doesn't seem bizarre to me at all, but then people ask me questions and they say things like, "Wow" and "You're a saint" or whatever. And I don't feel like I'm that fabulous, it's just my life. But anyway, like I said, not your point. I also know the feeling you're feeling and I know you wrote this post just to get it out and off your chest because it's better than repeating it over and over in your head. I'm glad you got it out. I hope the best for you and your family.

  6. As always a great post. It seems to me that you are right in taking advantage of the situation to reconnect with wifey and maybe do some things you haven't been able to do before. Thanks again for sharing 🙂

  7. You are amazing. That is all.