(I read Carry Yourself Back to Me by Deborah Reed as a member of the From Left to Write Book club. I was given a free copy of this book. This post was inspired by the book.)
The thing I like most about our book club is that you do not write a review of the book, but must write a post about what the book makes you think about. As soon as Annie Walsh’s brother, Calder, was introduced, within the first dozen pages or so, I had my inspiration. I caught on right away that something was not “right” with Calder, as the author and Annie noted his tics, and that they had started again.
Tourette’s Syndrome. My son has had it since he was two and a half years old. Yes, you read that right, two and a half. There is a family history of mental illness, including OCD. Males are affected three to four times more often than females. And after extensive trauma in his life and being bullied by his former friend in daycare (yes, bullied), my son was a trussed up target for Tourette’s.
I’ll never forget the first time I saw it. Tyler kept blinking his eyes, hyper-blinking. I thought at first “allergies”, but he had no other symptoms. We then took him to an opthamologist who prounounced his vision better than most toddlers his age. We were baffled.
But then we began to notice sniffing, throat clearing, heavy breathing and yawning. I called the pediatric nurse a couple of times in a panic only to be told if my son was having trouble breathing he would be “laying like a wet towel on the couch.” Tyler was not only NOT sitting around, in fact, the blinking, sniffing, coughing, etc. seemed to get worse when he was active.
Finally at three-years-old, a Pediatric Neurologist diagnosed my child with Tourette’s, along with Obsessive Compulsive Disorder. I did not want to believe it; just because my three-year-old put together a puzzle in a certain way, he had OCD?? Maybe he was just smart!
But sure enough, the OCD has also manifested itself in my son.
I think in my child’s five years of life, the worst time with the Tourette’s was when he started coughing uncontrollably when we would try to put him in his “big boy” bed. Tyler was so scared about being left alone in a room (and STILL is) that he would begin to cough. “I can’t stop coughing,” he would tell me, and I would try to rub his back to soothe his anxiety. Finally, after this going on for a couple of weeks and him not being able to sleep, every night to midnight or one ‘o clock, I took him to bed with me, where, being with his Mommy, he was finally able to stop tic-ing and rest peacefully.
Between sleeping in a sleeping bag by my bed and being in bed with me, Tyler spent almost two years in my room, with Grant forced to sleep on the couch.
A lot of mothers said it was the wrong thing to do, but I say until you live it, until you helplessly watch your child cough so much he can hardly breathe, then you can tell ME what I should do.
And now he has come to the age where he realizes that sleeping with Mommy is not the right thing to do. He is still too scared and anxious to sleep alone in his own room and so he has graduated to the love seat, where Grant still sleeps on the couch. Someday I believe I WILL have my husband back!
With Tyler’s form of Tourette’s, he is mostly able to hold back his tics during the school day. As soon as Grant would pick him up from pre-school he would start to tic. Like many children with Tourette’s, he feels comfortable enough with Grant and I to “let loose”. He has only been in kindergarten for a few weeks but even through pre-school, the Tourette’s never affected him “academically”.
At Tyler’s age, it is common for the tics to wax and wane, and for many months now, except for a few weeks when he was very nervous about starting kindergarten, we have noticed few tics. It is indeed possible that he does not have true Tourette’s; that this is just developmental, and that he could stop tic-ing altogether.
But I can’t help wondering…will he be able to make something of himself like Calder was able to in Carry Yourself Back to Me, or will his Tourette’s lead him to trouble, like it also does with Calder? I worry about him being teased in school. I have heard all of the great success stories of kids who had Tourette’s and grew up to be extremely successful and then I have heard the stories of kids who fall in to drugs, get in to trouble with the law, and wind up living with their parents in their adult years, unable to even get a job.
As a parent, all I can do is to do my best to educate myself, to observe, and give Tyler the help he needs. At this time Grant and I are looking for a child psychologist for him.
And I can love him…
Myths About Tourette’s Syndrome
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