At 24 years of age, DC started having seizures. **I worried about this when he was younger as I knew autism and seizures often go hand in hand. I had also always heard that in many cases, if your child has seizures when they are younger, they might stop when they hit puberty or if they never had seizures when they were younger, they could very well begin at puberty. I do not know how much truth there is in this but this is what I had always heard/believed, so puberty was my guideline.** (see below)
Once he hit his teen years, seizures became the last thing on my mind, so much so that when he did have his first seizure at 24, I had no idea what was happening.
After the second, he was put on medication and I knew that I was going to have to try to get him to wear a medical alert bracelet.
I was talking to a friend the other day about all of the accessories that DC has been made to wear since the seizures began and she admitted to being very surprised that he agrees to wear any of it, citing our many years of participation in Special Olympics and trying to figure out just what to do with the wrist bands that all of our kids were required to wear during tournaments. Other than the waiting, the wristbands were the biggest hurdle for most of our group.
DC has gotten better over the years about the wristbands. Not that it is still not a little bit of a battle to get him to wear one, but he tolerates it. It needs to come off the moment we leave wherever we were, that required him to wear it the band. THE MOMENT; meaning THE MOMENT. It does not matter if we are in the middle to the road, that wrist band is in my face.
This is the same guy who has no problem wearing 6 to 12 snap bracelets at one time, though.
My biggest fear with the seizures was him falling and hitting his head. He hates wearing hats. He wears them only when he absolutely has to; when it is part of the uniform. He wore a baseball cap when he played and he wears a baseball cap to work when he is working in the green house or on the grounds at his job for protection from the sun. I had to explain that the cap was part of his green house “uniform” to get him to wear it.
I bought a protective baseball cap to replace his “uniform” ball cap to provide some protection if he were to fall at work. I have to say that he has been very good about wearing it, but only at work.
Knowing that the bracelet would be a problem, I ordered some tags from If I Need Help, that have a code that can be scanned with Smart Phone or tablet. I knew I still wanted to try a medical alert bracelet because that is the first thing people look for, but I thought that these tags were a good option in case he refused to wear the bracelet.
I bought the dog tags and the shoe tags. DC also does not like to wear anything around his neck – another flashback to Special Olympics – and to be honest, I am not a fan of him having anything around his neck either. When I was a kid (an infant really), I saw Isadora, a movie with Vanessa Redgrave about Isadora Duncan and that was the end of scarfs or anything around the neck for me – Yes, it IS hard to be me. The chain that came with the dog tags seemed strong enough to keep him from losing it, but not so strong that it would not break if it got caught in something.
He was not having any of it at first, but I explained that it was important that he wore it in case he “fell down” again (he doesn’t seem to remember the actual seizures or he just cannot communicate it to me. He says/thinks he fell down) so people would know how to call Mom. I had to keep it simple. Someone being able to call Mom, did it for him.
Now, on to the bracelet. Since I had the tags that listed his medication (that could be easily changed at any time online), I opted not to list his meds on the bracelet. I knew that many times, the first med does not take or dosages have to be changed. I did not want him to be wearing an outdated bracelet or none at all while ordering and waiting for an updated bracelet to arrive after any med changes, so I just listed: Autism – Seizure Disorder – May Not Respond Properly – with his name on the back side.
And…. believe it or not; just like the glasses that I was sure he would never wear and/or would lose immediately, or the phone I thought he would never keep in his pocket and lose immediately – he proved me wrong.
He takes them off every night and the first thing he does when he gets out of the shower in the morning is put the dog tags on. After he is dressed and comes down stairs, he sits holding the bracelet and will do nothing else until I put it on (he can’t fasten it himself). There have been times when I was preoccupied with something else that I found him sitting with his breakfast in front of him, holding the bracelet, waiting instead of eating. First things first, I suppose. There is one quirk, though. He will not wear it with the text facing out so someone looking at his arm could read it easily. He HAS to wear it with the text facing him. There is no negotiating that point at all.
But go ahead and try to put anything else on his wrist. It still is not happening without drama.
I have written before about the fact that I do try to tell DC about his autism when the opportunity presents itself. I am not really sure that he understands but I do bring it up from time to time. Well, a few months ago, DC decided to read the text on his bracelet. I do not know if that was the first time he had read it or if it was just the first time he read it aloud to me, but he read “Awe-tis-ZUUUUUMMM” – “Is- er Dis-er”- “Does not ‘respend pop-oo-lee’ “, so I took that as another opportunity to talk about his autism.
Me: Autism – that is what you have. Do you know that you have autism?
Me: It is why you have a hard time talking sometimes and why somethings like loud noises bother you. I put that on your bracelet so people will know that you have autism and can not always tell us the things that you want to tell us and that sometimes it is confusing for you to answer questions.
That is about as far as I got before he lost interest and his attention went back to getting his bracelet on.
Since that day, when he is ready to have me put his bracelet on, he will hand it to me and say “Awe-tis-ZUUUUUMMM”, causing me to wonder if he now thinks that is the name of the bracelet.
In any case, we will keep discussing it and we will keep trying….
**I wanted to add a portion of a comment I received as explanation regarding seizures, pointing out that something that I do understand now but failed to explain or clarify properly above.
From C: Please note “that autism itself does not cause seizures. Epilepsy that is co-morbid with autism is what leads to seizures. I say this because not making that distinction leads to a lot of confusion and fear that isn’t necessary.
Some people develop epilepsy in adulthood or they had seizures that weren’t outwardly visible until new ones appeared later after they grew up.”
Thank you and good point!
I have not or will not receive compensation of any kind from If I Need Help for endorsing their product. I just think it is a great idea and a great product.
Please try to remember that autism itself does not cause seizures. Epilepsy that is comorbid with autism is what leads to seizures. I say this because not making that distinction leads to a lot of confusion and fear that isn’t necessary.
Some people develop epilepsy in adulthood or they had seizures that weren’t outwardly visible until new ones appeared later after they grew up.
Btw as an autistic person who also hates certain materials on my wrist– is it possible to get him a medic alert dog tag he can wear around his neck? What about patches you sew into his shirts? Just some ideas.
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Yes, I do understand that. But, I had (without looking into it ) always heard that there was a high occurrence of seizures with autism – so yes, I was one of those confused people that was never sure how true any of it was. But good point, just because I know that I was never sure how true any of the things I had “heard” were, I can’t assume that anyone reading knows that – if you don’t mind, I am going to add the part of your comment regarding seizures as a disclaimer to the bottom of the post. Thank you for your input and bring that to my attention.
I really appreciate you sharing this, you know Cooper didn’t have his first seizure until he was older. Like you, and I think a lot of people, I assumed once we cleared puberty we were safe.
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Yes and I can’t even tell you where I got that idea but that was always what I was told and like you, thought we were safe. Much of DC s youth was before Internet so information was hard to come by.
I guess we do get “comfortable” when some things SEEM under control. It is good that DC is wearing the bracelet and a new door is open for communication with him.
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Yes, that’s exactly it.
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