0

‘Worst fears’ and feelings of denial are common with Tourette

I’m a 45-year-old mother, wife and school counselor.  I’ve been married for 19 years and have two children.  My oldest child, son Will, is 14 and in his freshman year of high school. My youngest, Lilly, is 11 and in 6th grade.

Will was about 18 months old when we noticed he was stuttering and stammering.  My mother was a speech pathologist in her professional life, and her advice was to allow Will to speak as he needed and not to address the stuttering with him.

People would often try to be helpful and say, “Just take your time, Will”.  My mom told us we needed to gently request that people not address the stuttering at all.  It was heartbreaking to hear my little boy ask me a question which began “M-m-m-m-mommy?”  But like my mother predicted it most likely would, the stuttering passed.

In time, the stuttering was replaced with eye blinking and squinting.  This lasted for a few months and would kind of come and go.  When Will would get a cough or cold he would clear his throat many times a day.  Then, long after the cough and cold had cleared up, he would continue to clear his throat.  Both of these activities could certainly have been attributed to other causes such as vision problems or allergies.

There was something predictable about the patterns, though.  Having a background in counseling and mental health, I knew in the back of my mind that these were tics.
Still, we took Will to the family doctor.  He diagnosed him with Transient Tic Disorder and explained that in some children it disappears and in others, it simply doesn’t.  It didn’t in Will’s case.

Soon we began to see head jerking and shoulder shrugging.  And there were always behaviors that were difficult to explain and pinpoint. Will was smart, friendly and sweet, but terribly annoying to other children.  He had a difficult time staying focused, doing what he was told, transitioning between activities and his mood fluctuated often.

When Will was 6 years old, we took him to a neurologist who diagnosed him with Tourette Syndrome.  This neurologist explained that what Will had would be more bothersome to others than it was to Will and that we could consider medication at some point if we wanted.  He gave us some literature and directed us to some websites that would provide more information.

I left that appointment with two feelings.  One was a sinking feeling, my worst fear having been confirmed.  The other was a firm feeling of denial.  It wasn’t true and it didn’t matter.  Will was going to be OK and he was “normal” (so funny now, thinking back, what in the world is “normal” anyway?!)

Since that time Will has seen another neurologist, a psychiatrist, an acupuncturist and two psychologist/learning specialists. We now have five distinct diagnoses for Will and they help us to understand him better and to help him to be successfully socially and academically.

I am not a fan of labels, but what I’ve found these labels or diagnoses do for us and for Will is that they give us a better understanding of who Will is and how best to help him.  They also give us resources.  I had to push myself past the “label phobia” to get to the heart of each of the disorders and it all makes more sense now.

Will has the following:  Tourette Syndrome (the tics), ADHD severe, combined type (why he “wouldn’t” listen), Dysthymia (the mood fluctuations), Dysgraphia (writing disorder, common in kids with TS) and he is on the PDD scale, barely, but he’s there.  PDD, or Pervasive Developmental Disorder, is part of the Autism Spectrum, which I have to admit strikes the most fear in me.  But it explains why Will annoyed other children, he didn’t pick up on their social cues.

We’ve tried many different meds through the years, but nothing works well enough to justify the side effects.  We all wish for a magic pill to take it all away but there really isn’t one.  Will takes .25 mg daily of lexapro mostly to combat the Dysthymia; he is much happier on it.

It has been a long and bumpy road raising Will but he’s an amazing kid.  Conversations with him are entertaining and interesting.  There were times when he had zero friends who would call or come over.

Right now, though, he has two buddies here with him and they have been having a good time playing video games and baking and eating cookies for hours!  His grades are decent and he seems happy.  Although this hour may be a good one, I know tomorrow will be another battle but we’ll get through it.

I’ll keep you posted…

0 Comments

  1. Hi,

    I’m curious about Dysthymia. My son is 12 and they say he has a “mood disorder” simply because they don’t want to put the bi-polar label on him just yet because of his age.

    Kyle doesn’t have a good hour/bad hour kind of thing but more a few good weeks to a month or two bad. He can be very sad and very hard on himself. How about Will? I’m curious as to his moods and how it affects your family. I know he has the ability to “control” almost every event we do together. Thankfully, my other two boys (20 and 18) don’t get upset but I do because although he can’t control it I feel like I have to come up with some way get around that. To, let’s say, take that control back. If we were anywhere from a wedding to a summer bbq and he was in a mood, we might just as well not have gone. Kyle takes zoloft for the moods and they just had to increase it to 100mg. He is going thru puberty and it has gotten mean. lol.

    Anyway, write when you can and thanks for your time.
    Lynn

Leave a Reply

Your email address will not be published. Required fields are marked *