Label Matters by Karen Alaniz
My son’s struggles began on the baseball field but they had nothing to do with baseball. The sport itself was not new to him. He’d been playing for a few years. But something happened that year. He was in the third grade. Caught up in the controlled chaos that surrounded each game, I was only vaguely aware that Jeremy was having trouble. In fact, I gave no conscious thought to it at all. But his grandma did.
“I’ve been meaning to ask you,” my mom said one day. “What’s wrong with Jeremy’s neck?”
“Nothing,” I said. “What do you mean?”
She looked across the ball field, in his direction.
“Well, it looks like his neck hurts or something,” she said.
I watched him more closely then. Whenever he was in the outfield or was waiting for his turn at bat, the ritual began. He’d shrug his shoulders forward a few times, and then tilt his head slowly to one side and the other. And finally, he’d roll his head around in circles. When he got home, I asked him if his neck was alright.
“Does it hurt?”
“No.”
“Does it feel tight?”
“No.”
“Then why are you rolling your head back and forth all the time?”
“I don’t know.”
It didn’t seem important. The baseball season came and went. But the head-rolling continued. He was doing it 50 or 60 times a day, maybe more. But when I questioned him about it, he was nonchalant.
Then he adopted a new behavior. Again, I really didn’t notice at first. But gradually an awareness came over me. This time it was more noticeable because it involved his face. He scrunched up one side of his face, as if in a half-smile. And again, it occurred many, many times a day. When he started to complain that his neck and jaw were hurting, I told him it was probably because he was scrunching up his face and rolling his neck all the time.
“Just stop doing it and you’ll feel better,” I said simply.
When the behavior continued, I even offered a bribe.
“I’ll give you a dollar if you go an hour without doing it,” I said.
I really thought he could control it. And he did too. But after a few minute the behavior resumed. I knew I should call the doctor, but I also knew it could mean a diagnosis. And a diagnosis would mean a label. By taking him to the doctor, I could be putting a label on Jeremy that would stay forever. It could affect his relationships with teachers, family and friends. It could change him forever. Still, what if there was something simple that could help Jeremy? In the end, I picked up the phone and prayed I was doing the right thing.
I felt silly making an appointment for him to see his pediatrician. When the receptionist asked what he needed to be seen for, I stumbled over the words. With no time to think it through, I said, “He’s making faces and rolling his neck all the time.” If the receptionist thought it was strange, she didn’t let on.
We sat with his doctor for over an hour answering questions. When did the behavior start? What seems to make it worse? What makes it better? Is there a history of tics in your family? Wait a minute I thought. Tics? Is that what this is?
When we left the pediatrician’s office that day, we finally had an answer. He was diagnosed with Simple Tics. Tics are a repetitive behavior that a person is compelled to do. The prognosis was mixed- fifty percent would outgrow them by adolescence and for the other half, the tics would get worse. Of those, a handful would develop vocal tics. When simple tics are paired with vocal tics, the diagnosis is Tourette syndrome. For now though, the news was good. The repetitive motions were causing pain, but that could be controlled or alleviated by rest and ibuprofen.
But just a few months later, Jeremy began having vocal tics and I knew right away, that his simple tics were now full blown Tourette syndrome. I was devastated. I recalled dramatic shows on television that showed people with Tourette swearing uncontrollably. I imagined people staring and pointing at my son. This time, the diagnosis brought no comfort. It brought only pain and uncertainty. Jeremy’s vocal tics never involved profanity; something that I would learn was actually quite rare.
Trial after trial of medication, helped to decrease the frequency of the tics, but there was a high price to pay. The sedating drugs left Jeremy so tired that he slept through most of the next year. I educated myself, learning everything I could about Tourette. I learned about the social and educational impact of his condition. I met with his teachers to talk about accommodations. Jeremy didn’t qualify for an Individual Educational Plan (I.E.P.), but he did qualify for a 504 Plan.
The 504 Plan was designed to keep kids from falling through the cracks of the school system. Jeremy’s academic skills were too high for an I.E.P. but he needed accommodations in order to fully participate in his education. Most of the accommodations were designed to alleviate anxiety, which made the tics worse. With the 504 Plan, he would be able to leave the room when anxious. He needed to be able to take tests in a smaller environment, and work on assignments in a place free from distractions.
The label of Tourette syndrome, though devastating, was necessary. But honestly, it may have helped me, more than my child. I don’t know whether that’s good or bad. The label meant I had a place to look for information and support. It gave me an answer to the question I couldn’t even formulate in the beginning, what is wrong with my child? Some parents spend years and a small fortune looking searching for that answer. Jeremy’s diagnosis gave me a quick, pat answer when friends and family wanted to understand.
But in the end, the label didn’t matter at all to Jeremy. In fact, it wasn’t much different than the other labels he’d attained thus far. Life experiences create labels, and Jeremy had plenty of them. He was an athlete, a caring little boy, and an artist (just to name a few). The label of Tourette syndrome wasn’t any different. After all, a label does not define you; it’s what you do with the label that matters.
