We took Ryan to the neurologist this week. It was Veronica’s idea, but I was fully on board. (You were right, honey — it was your idea. Please remember that I admitted it.) We needed a neurological opinion about Ryan’s ongoing facial tics, now frequently augmented by a nasal snorting sound.
It’s an issue we have addressed with a behavioral therapist, a psychologist and a psychiatrist since it became frequent last spring. We made the decision to take him completely off medication for a month to see if the meds were causing the tic, but it remained and we heard from teachers that his focus and attention in school suffered as a result. So he went back on the meds. The psychologist suggested to Ryan that it was a habit, one he could control.
The idea of it being a habit resonated with us. Throughout Ryan’s life, we have dealt with some challenging habitual behaviors, many of the oral variety. He chews on collars, on jackets, on gloves. We have a closet full of coats where the upper few inches of the zipper is destroyed. Four or five years ago, we dealt with perhaps the most difficult challenge we’ve faced. Ryan stopped swallowing his saliva. Instead, he would spit if he was outdoors, or sort of blot it on the front of his shirt if he wasn’t. It got to the point we had to send him to school with a change of shirts every day. We were very worried about this becoming stigmatizing, and sought to address it with all manner of methods. We tried “chewelry“. We had a private behavioral evaluation. Nothing seemed to work, until his brilliant aide, who was tasked with tallying the frequency of the behavior, decided that it might work better if Ryan kept the tally himself and set a decreasing goal each day. The behavior all but disappeared within a few weeks.
We hoped a similar approach might work this time, but the behaviorist pointed out that having him keep a tally of a behavior as a sixth-grader might be stigmatizing in itself. We tried tallying at home, but nothing seemed to reduce the overall frequency. After the psychologist suggested it was a habit, the frequency did drop very suddenly, giving us hope this was something Ryan could control. We encouraged him to do so and reminded him of what the psychologist had said, but the frequency soon returned to its previous level.
As our frustration mounted, we decided we had to try something else. In a middle of the night conversation, we agreed to seek a neurology consult. And that’s how we ended up in Dr. S’s office this week. Veronica knew him and called him for a recommendation for a child neurologist. He suggested himself. He was amazing. He took the time to ask Ryan and us questions. We had a lengthy and very honest conversation, the kind you never get to have with a doctor these days.
He confirmed that the tic is neurological and a common part of autism spectrum disorders. He did think Ryan could exercise some level of control over its frequency but made it clear that he’s not going to stop entirely just because we ask him to.
It was something we needed to hear from a neurological professional.
Of all the questions he asked, the one that stuck with me was this:
“Who is this a problem for?”
Veronica looked at each other, and answered simultaneously.
It’s true. The behavior bothers us because we fear it will further isolate Ryan socially. We hate that it is yet another challenge he has to overcome to fit in with his peers. But it is not a problem for Ryan, at least not now. According to his teachers, it is not a problem in school. And if it’s something his peers mock him for, we have not yet seen it.
No. The problem is ours. At least right now.
With that, Dr. S agreed. He was adamant he would not treat the tic with additional medication, something we were relieved to hear. It took us roughly eight years to try medication for the first time. It was not a decision we came by easily, and one we still struggle with. The last thing we want to do is add another med to the mix.
But Dr. S also pointed out that if Ryan were 18, he might approach it differently. The point was not lost on us. If it were more socially stigmatizing for Ryan and he wanted to do something about it, it might shift the risk-benefit ratio to the point that additional medical intervention would be warranted.
With that leaving a heavy feeling in our hearts, we took Ryan to the drive-thru at McDonald’s and took him home rather than rushing him back for the last hour of school. He asked us several times if a truant officer would find him. He held on to the doctor’s note he asked for and received directly from Dr. S.
Veronica and I both spent the rest of the day in somewhat of a funk. Fortunately there were no family fireworks in the evening as had happened several times this week. We gathered as a family to watch the Devils play on TV until Ryan insisted he was tired and wanted to go to bed shortly after eight. We let him, but he heard the Devils “goal song” just as he was heading into his room and ran down the stairs, made us rewind to the goal, and shouted along with the “Hey, you suck!” cheer that he loves. His grin was irrepressible. It was the last image we had of him to end a difficult day, and it somewhat salved the wound the neurology visit had inflicted.
That’s not to say we were disappointed with Dr. S. On the contrary, he was fantastic. We took our son to see him, and he ended up treating all three of us. Ryan charmed him throughout our time together, and he made sure we knew it. He told us to call him anytime.
We didn’t really learn anything new, but sometimes you need to hear it from a different perspective. A much as I wanted Dr. S to tell us this is a habit Ryan can break, I needed to hear him tell us it wasn’t. I will think of that the next time I feel the urge to remind Ryan how frequently the tic is occurring.
That alone made the visit worthwhile — especially since we got a three-for-one deal on treatment.