In early January, the results were back. There was increased abnormal activity in the left temporal lobe. The report called it “stable abnormal activity” which seemed just the epitome of ironic phrases to me.
The first EEG showed left temporal lobe seizures. The second EEG showed no seizures on the left. The most recent, in January, showed a reemergence of left temporal lobe seizures again.
Since his seizures are “silent”, I’m left assessing things as an “outsider”. I see things that I can chalk up as silly behavior or as warning signs. Underlying it all, I have this constant fear over what makes him do some of the things he does. When he laughs hysterically, with no external cue, or when I must repeat the same question over fifteen minutes with no response, I worry whether he is having a seizure or how extensive the damage from it may be.
But even if I did know, so what? It’s not like I can reach into the medicine cabinet and give him a bandaid to stop or fix it.
When I was younger, I had a persistent nightmare. I’d need to dial a telephone number because there was an emergency. No matter how hard I tried I never could get through. I supposed back then that making a call in time, could always solve a problem. But that was wrong. And here I am. I call the neurologist and explain how my son’s behavior says something is worsening – but my call can’t fix it. I can’t stop the electrical battering to my child…
I deeply love a child whose level of disability rises and falls unpredictably. One minute he’s winning the class spelling bee, playing with friends, hugging his mama. The next, he is completely nonresponsive to everyone, or laughing hysterically like he’s being tickled to death.
At minimum, I’m on yellow alert.
A week ago, I took him to school. A classmate asked him to play and the two of them wandered away. I’m on Cloud 9, as I’m trying to keep track of him through the crowd. But then his teacher approaches. She pokes a hole in my cloud. He’s taken another reading test, she says, and he tested at a 9 month level. I don’t understand what that means. She says, “Don’t be shocked, when you see the results,” “He must’ve been having an off-day,” and “I’m going to let him take it over again.”
This had been his strength. When he started the school year, he tested in the highest five percent of all kids who took the test, across the country. Now? Not even close. I call the ABA staff. The new senior tutor agrees to be the one who supervises the retest. He takes it over. He doesn’t do much better.
The problems are quite defined. There’s just no real answer. No solution – no fix.
He’s crashing. I’m dialing. The neurologist cuts a dose of one med, orders another blood draw to check the levels of medication in his blood. His ABA team talks -formulates a plan. But I’m tired. There’s always a “plan”.
I want answers. I want it fixed. Too bad for both of us. And lately, I’ve seen faces, relatives, acquaintances, who give me looks of pity. I’d rather they despised me than pitied me. So, I just have to take it. From both ends. I call, let the “team” speculate and experiment on my son… and I have to accept that.
I’ve never accepted that. I doubt I ever will. I know there has to be a way and someday it will be found for someone.
I buy reading comprehension books. He reads a paragraph and responds to the multiple choice questions perfectly without a prompt. I have him do an online spelling test. He gets 100 percent on his first try.
Then, we sit back to read “Owl at Home”. The first story is about winter knocking at Owl’s door. He has no clue what “winter” is. He’s nearly 7 years old. Even after I explain it to him, he tells me you wear shorts in the winter. After five minutes, he is gone, though sitting right next to me. I tell him to go play. I head back to buy new materials to teach him about the seasons.
The other night, he was struggling to get through his homework after school and OT testing. He wanted to give up. I told him that a lot of times, he has to work harder than other kids because he has autism. There was a pause, and then he said, very clearly, “I don’t want autism.”
I answered, “Autism is not just about things being hard – it makes you who you are – you’re sweet, and good, and everyone loves you, and part of all that good is autism too.” He was quiet, and gave me his tilt of the head, as though he was weighing what I said. Then, his lips began to move with no words. He started to echo.
And before I knew it, he was gone again- even before his body got up and he ran off to play.