I was nervous all day. There was no school. Instead, ABA worked with my son trying to prep him for the EEG. The social story was read to him. He wore his little hat and was not allowed to take it off like he usually does.
Close to 2 p.m., out came the Flexeril capsule I was given by the neurologist to calm him down for the electrode placement. I was told to give it to him about a half hour before the electrodes were put on. I broke it open, put it into some applesauce and fed it to him.
Now, here’s the deal. The boy hates anything on his head. He does not like hats, glasses, earphones, combs, brushes, nothing. Nada. He hates having his hair shampooed. He gives me a tirade of baby swear words, “Screwdriver! Let’s count! Hammer!” are his latest swear words during shampoo, towel drying and combing. Get a blow dryer near the boy and he will run to the next county.
So combining the world of wet head and blow dryers with something wrapped around the head was a recipe for certain meltdown disaster. Everyone knew. Thus, the muscle relaxant, the social story and the promise of a toy afterward. Since the hubs is prepping for yet another trial (this one will be without me), Jessica was my backup for today’s festivities. And let me tell you. Jessica deserves an award.
At first, we were all calm and waiting to see if the medication was going to make a difference. I noticed it almost immediately. Jessica poo-poo’ed my observations at first, saying it would take awhile to work. Then, she started to see it too and realized that without the outer coating of the capsule to dissolve, the medication was working a lot faster than expected.
We headed to the local hospital where the electrodes would be adhered to his head. Now, here’s the deal. My son is five (5) years old. He’s big at 50 pounds and nearly four feet tall. As I registered him at the hospital, Jessica took him to the bathroom. (I think he’d been holding it all day). When she came back, we all waited. He started out trying to play his iPad.
Then, he started showing some serious sleepy.
Then, he asked for mama to hold him so he could sleep.
Then, finally around 2:40 p.m., the EEG tech called us back. When we got into the room (I carried the little giant) I laid him down on the gurney and he was totally passed out. Instead of starting right away, the EEG tech got on the phone, yapped to somebody about something completely unrelated to my son, hung up, and spaced out herself, looking at a calendar on the wall.
I suggested she take advantage of my son sleeping to get started. She looked at me kind of funny – almost in a fearful way, and then she started taking measurements and roughly marking his scalp with a green marker. I asked her if that marker was going to come off. She did not explain anything voluntarily. She looked at me like I was an idiot and said, yes, it was a water-based marker. She marked a spot just in front of his ear on each side of his face and then used a tape measure to take a reading from ear to ear over the top of his head. She seemed to have difficulty reading the number. She did it about five times. Then she started marking down his head midway and various spots around his scalp, all over his head.
As she was marking him, guess what? He woke up. And he freaked out. He sat straight up, eyes wide open because he did not know where he was. We spoke gently to him and got him to lie back down.
The little guy, as you all know, has a lot of hair. Made no difference. The tech doesn’t need it cut. She just worked around the hair. She had a bottle of goopy white glue and spotch some out on the areas marked on his head. Then she adhered the electrode, which looks like one of those round little silver batteries that cost a fortune for the 30 cent toy you buy at Dollar Tree. On top of that, she put this piece of gauze that’s been soaked in some kind of clear cold thick goop on top of the electrode. The whole thing touched me a few times as I sought to protect the little guy’s ear. It felt like a cold piece of slimy algae.
Then, as if that’s not enough sensory overload for an autistic five-year old child, she used a tube that blew air and forced the air all over this goopy, stinking mess to dry and adhere it to the scalp.
Repeat. 26 times. Slowly. With screaming, freaking out, sensory overloaded half-drugged with muscle relaxant child. Get right next to his ear so he can freak out extra.
From the time he woke up he was crying, full-on tears, and asking for Mickey Mouse Clubhouse, Wubzy, Dora, and blue, green and orange Camaros and trucks. In between these requests, which I was frantically hunting down on his iPad, he would yell “Clean, clean,” to have Jessica or I wipe away his tears and wipe his nose. At the same time, we were trying to hold down his legs and arms while two EEG techs held his head and only one of the two did the wiring.
Guess what again? Toward the end, the tech said that she could have used a “papoose”. Something hanging on the wall – like an x-ray apron that was heavily weighted and would have held him down. Yeah, thanks a lot. That was fun.
And another guess what? She encouraged his meltdown by asking him about colors when he was repeating colors as a soothing stim in a highly intense situation. She asked, “What color is the sky?” What the hell? If Jessica and I hadn’t been holding down his limbs, I think one of us would have punched her.
The tech attached the wires to the box, two wires to his back, tied the wires together with tape, and wrapped the whole thing, wires, and my son’s head with kind of a gauze stocking thing. The box was placed in a backpack and he has to wear the backpack everywhere until he goes to bed… Who knows what will happen while he is sleeping with it?
The whole thing took from about 2:45 to 4:05 p.m., an hour and 20 minutes. They told us 30-60 minutes. The hat used to prepare the little guy? That was the least of our worries. You want to prepare your child? Put cold goop on his or her head and blow it dry with some tubing next to their ears. Sound like fun? Jessica and I walked out with this look on our faces:
The whole electrode placement has (knock on wood) been the worst part so far. After dropping Jessica off at the local sanitarium to recover, I took the boy straight over to Toys-R-Us. He totally earned his new truck.
He has touched his head probably 10 times in the last four hours, which really has not been bad. Just before 8 p.m., he was sitting at his little table (where I write the blog) with me. He looked at me and said, “We saw the EEG tech today,” He touched his head very gently, like he was patting himself. I wanted to cry. What a beautiful sentence.
Such a brave and sweet boy. After all that, I hope we get answers. I’ll know in mid-October. Hopefully, if anyone else has to go through this with their autistic child, this post will help prepare you. It’s no picnic.