Our journey with TS started when Ben was very young. I’m not sure that I can give an accurate account of his TS without explaining the other conditions that seem to be part and parcel of his TS.
It is sometimes hard to sort out what category a particular behavior belongs to. In the end, it really doesn’t matter. What I want for Ben (not his real name) is for him to understand and accept who he is, to feel happy and confidant, and know that he can achieve whatever he sets his mind to.
Always a mover and never a sitter, we enjoyed Ben’s playfulness and sense of humor, even as a toddler. He didn’t seem to be able to rein himself in, though, and he spent many a minute in the time-out chair in the kitchen when I just didn’t know what else to do. Once he found out that an ordinary kitchen chair could be used as a jungle gym, he perfected the art of hanging upside down on it.
During his early years, I also had countless positive reinforcement charts for behavior modification, addressing one behavior at a time – brushing his teeth by himself within the third time of being asked, not interrupting his older sister each and every night as she was recounting her day at school so that we could avoid dual meltdowns at the dinner table, earning points for a set amount of TV time so that I could turn off the TV without having him throw a temper tantrum, and so on.
And at the end each day, when winding down was just not an option for Ben, a nice, long bath was always the answer.
In kindergarten, I noticed that he had some difficulty with his letters, and by first grade I pushed for him to have academic intervention in reading. His first-grade teacher was a gem – she would put Ben in the hall and ask him to run 10 of his fastest laps. When Ben would return to class, she would ask him if he was now ready to start math. She modified his work so that he felt success, and he progressed nicely. But yes, still a “bit” wild.
So I brought him to a developmental pediatrician who diagnosed him with ADHD, and we got a 504 plan for him. My husband and I did not want Ben to be thought of as a “bad” kid – he had impulses that he couldn’t control and we wanted the school to recognize that.
In second grade, he developed an allergy to dust mites, which was accompanied by a constant clearing of his throat. At the time, we thought the two were related. He also became a proficient whistler and could whistle any tune and even add embellishments. He whistled all the time, and we enjoyed it. And yes, he could still accomplish acrobatic feats on the kitchen chair.
We also brought him to a pediatric neurologist because he was constantly blinking his eyes. She assured us that a lot of kids did this, and not to worry about it.
In Ben’s third-grade play, the teachers were amazed at how our rough-and-tough, football-loving son could also sing so intensely in the chorus – constantly stretching his neck out further to belt out the tune.
The parents were given DVD’s of the play. We watched as Ben stretched out his neck, and retracted it countless times. We rewatched that part of the DVD many times until we knew that what we were seeing was not enthusiasm, but a tic. That summer, his tics intensified – facial grimacing, head shaking, shoulder shrugging. Our pediatrician told us not to worry, that most kids outgrow this sort of thing.
In fourth grade, the tics were intensifying and morphing into new ones, including sniffing and some rasping sounds that punctuated the ends of his sentences, and we brought him back to the same pediatric neurologist who again assured us that there was no issue. She was not going to put him on medication, she didn’t believe in it, and we should stop being such worrying parents.
I turned to acupuncture and homeopathic medicine. Trying to give Ben the homeopathic medicine was a disaster – he was not having anything to do with dropping liquid on his tongue three times a day, and then not being able to eat for a half-hour afterward. Don’t mess with Ben’s appetite!
The acupuncture, though, really relaxed Ben, his tics almost disappeared and so we thought we had found a “cure.” However, after a few months, he resisted going to acupuncture – he told me it was too much for his busy body to lie still for an hour and begged not to have to go.
We told him it was helping his football – that if he could relax, it would help him on the field. That year, I was told by a fan, Ben had the honor of scoring the most touchdowns of any fourth-grader in our town’s history. He refused to go to acupuncture after football season was over.
By fifth grade, things were not getting better. We told Ben that we wanted to take him to a doctor, that maybe there was some type of medicine that could help relieve his tics. He wanted nothing to do with that.
In retrospect, I don’t know why we listened to him, we were the parents. But he was such a stubborn kid that we knew in our hearts that he wouldn’t take any medicine unless he wanted to. School was still a struggle for him – academically, socially and behaviorally.
By 6th grade, I had done a lot of research on the internet, and with the help of the TSANJ’s website, was able to diagnose Ben’s TS. Ben went to my husband one day and told him that the tics were physically exhausting him, and that if we could get him some medicine to stop the tics, he would take it.
I broached the subject of TS with him before our appointment with a new pediatric neurologist and told Ben we thought that his condition was TS. He seemed relieved that it had a name, and none of use were surprised when the doctor pronounced he had TS. But he also told us that the only good thing about having a name for the condition was that it would help us to get accommodations in school so that things would not be so tough for Ben.
Other than that, he told Ben that he was going to grow up just like any other kid and be a success. “After all”, the doctor said, “I have ADHD and OCD, and look how successful I am!”
He started taking Tennex, gradually increasing the dose with no side effects, and he experienced relief in the frequency of his tics. Ben is in ninth grade now. Thinking back on what the neurologist said, at that time I didn’t know what a long and difficult road it would be, and still is.