TracyL talked about the following with first- and second-year graduate students at Rutgers University’s Graduate School of Applied and Professional Psychology as part of the New Jersey Center for Tourette Syndrome’s first annual Tourette Syndrome Awareness Week.
I have an 11-year-old son with TS and a 9-year-old daughter who does not have it. With my son, Ethan, we had him evaluated when we started noticing language delays at 3 years old. He also would drop to his knees, then get back up and retrace his steps while walking as a toddler, and also was volatile and challenging. Those were really our only complaints early on.
But it persisted for a few years. Still, Ethan qualified for Early Intervention, made progress for a few years and was put in a regular kindergarten class. But the falling-to-his-knees tic eventually became more aggressive and started to involved jumping. It was at this time that he was first diagnosed with OCD and anxiety.
Since that time, Ethan’s tics have evolved. There’s a lot of eye blinking, shoulder shrugging and shaking of his hands, as well as spitting, which luckily has come and gone. He also has coprolalia and, as much as I hate to say it, he has become quite creative with his curses.
Still, despite all that, Ethan initially did a good job of keeping everything in at school — until a few years ago, when it got worse and he finally got the diagnosis of TS with OCD and auditory processing disorder (APD).
There are a lot of triggers for him, such as his name. We address him without using his name, and his teachers are excellent at being creative about not saying his name. You see him tense up and try to fight off the tics when he hears his name. If you talk a lot, it’s also a trigger. We use a lot of white noise at home, such as the oven fan, and it does help.
What are other kids reactions at school?
The kids he’s in school with now have known him since kindergarten, so they’ve known him a long time and accepted him just the way he is. They don’t notice his tics because he very much involves you in his tics. His OCD is scripted and controlling. He has to do things until it feels just right. He’ll say to his friends, “Put this here. No, now put this here. Put this here again.”
But it’s not fun to be Ethan’s friend, and we are preparing ourselves as much as possible for what’s next when he goes to a consolidated middle school next year. He blends in as much as we can hope, but next year is our worry even though he will be in a regular classroom with an IEP.
What is your experience with doctors?
We have seen a few doctors, neurologists, a psychologist and a therapist (psychiatrist). We even met the psychologist here at the Rutgers TS Clinic. We go every week. We never miss a week. But it’s not something that Ethan responds to (well) at this time. He’s not willing to talk. Forty-five minutes of the hourlong session is for us, and 15 minutes is for him. We’ve tried all kinds of therapy, including Habit Reversal Therapy (HRT). We’re surviving, though, and we at least have strategies to try.
What are your experiences with rage?
You could ask Ethan where his coat is, and it just triggers something and he throws a pencil across the room or something like that. You can’t intercede on his behalf, and you can’t comfort him.
Initially, I thought it was just the terrible two’s and that he couldn’t communicate because of his language issues. But it’s still a problem. He gets very tired from his rage and he admits it. There’s a point of shift in thinking where you work toward finding a cure — wanting it to be fixed. We just want it to be livable and functioning.
We needed therapy, a drug, a place to relax, unwind and be ourselves — like Camp Bernie. There’s no quick fix, pill or magic wand. But then you think, “We have to weather the storm and get him through this — get all of us through this — with as little pain as possible.” If you can get to that point, that’s really powerful.