No one told me that about 25% of teenagers with Autism have seizures.
No one told me what to expect.
What to do.
How to survive.
How to sleep at night.
How not to jump at every sound.
No one told me…
And yet there he was. My precious Matthew writhing on the floor, his head thrown back, eyes rolled back in his head, foaming at the mouth, and growling like a mad dog.
It was over five years ago but I can close my eyes and see it like it is happening now. We were attending Special Olympics state games in Long Beach. Matthew was on the Track Team and I was there as an Assistant Coach. All of the Athletes and Coaches had congregated in the hotel dining room for a buffet breakfast. Matthew had just gone in to sit down and I was getting orange juice.
Someone, I don’t remember who, came in and told me that Matthew was having a seizure. I remember thinking, “Matthew who?” My Matthew was the only Matthew on the team and he didn’t have seizures. But somewhere in the back of my mind reality hit hard and fast. I don’t remember what I did with my breakfast tray. I just ran into the dining room.
It was surreal.
There was this boy writhing on the ground with 3 Marines leaning over him.
No kidding, 3 Marines.
I had never seen someone have a Grand Mal seizure and I didn’t know they were common in Autistic Teens. As I watched Matthew I knew he was going to die. My precious baby was going to die right there.
And then I looked up at the 3 Marines and I remember thinking, “No, it’ll be alright, the Marines are here.” Then I remember thinking, why are they here? Aren’t they supposed to be storming a beach somewhere? Odd what goes through your mind at these times.
Matthew’s Dad, Stepmother and Sister were still in their room and I remember someone handing me a phone. I suddenly no longer knew how to use one. Someone else had to call them. Someone else called 911.
And all I could do was hold Matthew’s head and tell him I loved him.
One of the other coaches told me later how much they admired how calm I was and how well I handled the situation.
I think I was just too stunned to get hysterical but trust me, inside I was completely hysterical.
Slowly Matthew’s eyes started searching around the room, unfocused but not rolling back in his head. He said, in a rather weak voice, “Mom?”
It was the most beautiful sound in the world! And I knew everything was going to be OK. He was really groggy. If you didn’t know what just happened, you might have thought he was drunk.
The paramedics arrived about this time and I remember the Marines calling out respiration and pulse numbers and other info. I remember looking up and seeing the rest of my family walk in looking stunned. But we were on our way back to OK at that point.
The calm efficiency of the Marines and the Paramedics really helped me keep it together and somehow I got up and walked out to the ambulance for the ride to the emergency room. Directions to the hospital were given to Steve, Matthew’s Dad, and plans were coordinated and it was all a bit of a blur.
But coming back into focus a little.
And then I knew all was well…
I was riding in the front of the ambulance and two paramedics were with Matthew in the back. One of them asked him to do something and he replied, in his normal, enthusiastic voice, “Yes, Sir.!”
We all laughed and I told the Paramedics, “He’s back. He’s OK. That’s my Matthew again.”
We still spent a nerve wracking morning in the ER while they did an MRI and blood tests and other stuff. The Doctor explained that since this was Matthew’s first seizure they couldn’t know yet what it meant long term. All they could do was rule out things like a brain tumor (What?!?!) and then wait to see if he had another one. He didn’t say anything but I could tell by the look on his face that he was stunned and a bit angry that no one had ever warned us about this. He was an ER doctor but he was aware that this was not uncommon in teens with Autism.
You’d think between doctors, special ed teachers, speech therapists, behavioral therapists and case managers that someone might have mentioned something. It would have saved me a lot of stress and fear. You can’t prepare emotionally for it. If you’ve never seen someone have a Grand Mal Seizure all I can tell you is that it is completely terrifying. And I would still have been terrified as it was happening but I would also have known that it’s not the most horrible thing that can happen. That it’s a manageable situation.
And that Matthew was not going to die.
My Matthew is an amazing spirit. He had a great time that afternoon at the Olympic Village and ran his events (he’s a distance runner) the next day. He brought home a silver and a gold – very precious metals!
Matthew has had four more seizures since that day but now we have them under control with medication. Until we were confident the medication was working we definitely made some lifestyle changes. And it took me a while to sleep well and stop jumping at every sound (the joys of a 2 story house and a crazy kid who likes to jump down from a bunk bed!).
The fear with those seizures was not the actual seizure but the fall. Matthew is over 6 feet tall and when his body seizes he doesn’t just fall, he is literally thrown to the ground. He has had some nasty bumps on the head and twice we were worried about concussions.
Each time he had a seizure I was freaked out. It’s just how he looks when he’s having one. But at the same time, I wasn’t as terrified as I was the first time. I knew what to do and what to expect and I handled it.
But I wish someone had warned me…
Don’t panic if your child starts to have seizures. From our experiences and from what I have learned it is usually something that looks a lot worse than it is.