Saturday, May 29, 2021

The Trials of Parenting a Tourette's Child


NOTE:  Here is a continuation of an excerpt from a book I'm working on, called "Far From Magnolia Drive."  It's a story of a mother and her family, echoing some of my own experiences, but not a memoir.  If you want to read the first excerpt, it's in my archives.  Hopefully, there will be more chapters to come.

Lying sleepless in bed, she listened to Rick snoring softly.  The sound didn’t really bother her.  She was just envious that he was asleep.  Her mind was whirling around, trying to pray, but her thoughts kept wandering.

Turning onto her right side, produced an angry meow. 

“Sorry, Tiglet,” she whispered.  “Didn’t know you were there.”

The tiger-striped cat they’d been given last year curled up between her knees and arms, in the hollow made by lying on her side.  They had always been cat people, so after Rick’s first cat Tiger died, all of them longed to have another brown-striped cat.  Since this one was a kitten, the name Tiglet came naturally.  He felt warm and cuddly, and the sound of his purring began to relax her.  Still the thoughts kept flowing:

          She remembered when they first noticed Jay squinting his eyes and blinking a lot in kindergarten.  Sometimes his mouth twitched, too.  When they took him to the eye doctor, they learned he did need glasses, but glasses didn’t stop the blinking.  When they asked the pediatrician about it, she said he’d outgrow it.

          The next thing that came along was the constant throat clearing, with clicking sounds interrupting his speech.  About this time, she saw a feature on Tourette’s on one of those news shows, probably Sixty Minutes. That’s when she began to wonder, but no one else noticed.  Maybe I’m being paranoid, she told herself at the time.

          Next they took Jay to an Ear, Nose, and Throat doctor, who said his noises weren’t caused by allergies, and maybe he was becoming a stutterer.  This turned out to be another dead end.  She decided God was making her work too hard at learning patience.


How she wished she could go to sleep, to keep these thoughts from carrying her away.  They just wouldn’t stop tonight--like a dam had burst in her mind, with all kinds of old suppressed feelings flooding out.  She kept petting the cat, and he purred.  But her mind reeled on:

          By second grade, Jay’s vocal noises were a disruption in class.  The teacher sent him to the school counselor, who suggested getting a full psychological evaluation.  The nearest child psychologist was over sixty miles away.  Though their health insurance didn’t pay for any of this, they went through with it, wanting to help Jay as much as they could.

          After the psychologist’s long session with Jay, he sent them to a neurologist.  When were they going to get any answers?  The neurologist did a battery of tests, too, including an EEG.  They had to drive over an hour to the doctor’s office for each test.  Jay was deathly afraid of needles, and by the end, he didn’t like doctors either.  After all that, the neurologist said Jay probably had Tourette’s Syndrome. 

If only they’d explained beforehand that there’s no definitive test for Tourette’s, but all they can do is rule out every other possibility.  What an ordeal! she sighed. I’m not sure who it was harder on, Jay, or Rick and me.  I still hadn’t learned enough patience apparently, for this was only the beginning.  The neurologist said we had to wait a year before trying any medication.  I guess they were waiting to see if anything else showed up.  

She knew she’d been hoping for some miracle drug that would make things all better.  But there never was one for Jay.

          Denial set in, especially on Jay’s part.  He wouldn’t even let them use the word Tourette’s around him. She and Rick had to meet with his teachers every year to explain Jay’s condition, to let them know that Jay wasn’t being intentionally bad. 

There are so many misconceptions about Tourette’s.  It was barely even mentioned in the psychology courses I took for my teaching certificate.  She mouthed these words to the cat.

Still stroking Tiglet’s head behind the ears, where he liked it best, she mumbled aloud, “I wish I was a cat.  My life would be so much simpler—just eat and sleep.” 

Almost as though he heard her, Tiglet put a paw on her hand.

At this point in her life, she felt a desperate need to get all these scattered memories collected into some kind of order.  Maybe it was a symptom of aging, this need to look back, to try to convince herself that life had been worthwhile.

Right now, the memories bounced around in her mind like popcorn flying out of a pan with the lid off.  Somehow, she must corral them, maybe try to put them on a string, like the popcorn garlands they used to make for the Christmas tree, when Amy and Jay were young.