Wondering About My Son’s Future

(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…

and…

Wait.

Myths About Tourette’s Syndrome                                                                                                             

 

 

 

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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10 Responses to Wondering About My Son’s Future

  1. Thien-Kim says:

    Thank you for sharing your son’s story. I think you have the right philosophy. Take things day by day and go from there.
    Thien-Kim´s last blog post ..Keeping the N-Word in "I Believe" By Blessid Union of Souls

  2. Pingback: Book Club Day: Carry Yourself Back to Me by Deborah Reed

  3. Jennie B says:

    I also wonder what the future will hold for my son, who is on the autism spectrum. We work hard for them, love them, but ultimately it is all a matter of time. This book clearly had a very personal connection for you!
    Jennie B´s last blog post ..The Soundtrack of Your Life

  4. Deborah Reed says:

    This post struck me very deeply, and when I read your bio, it struck even deeper. I love how every reader brings her own story to the page and new ideas and thoughts get spun in such unexpected ways. I know two boys who have tics and they are both extraordinary individuals. Growing up can be such a painful time even without adding anything extra to make it more complicated and difficult. Both these boys are wiser and stronger than most. The adversity they’ve faced has somehow made them more compassionate toward others. Life is full of surprises this way. And children are such remarkable creatures.
    On a side note, I too have fibromyalgia. I’ve been living with it for about 7 years now. I’m doing far better than I ever did before and I attribute it to high doses of vitamin D, yoga, and a mainly fresh fruit and vegetable diet with some lean meats. These are fairly simple changes but if you follow them they can make an enormous difference. I went from being nearly bed ridden to living a fairly normal life. This is my hope for you.
    Sending warm wishes and gratitude for the time you took with my novel (knowing what you’re up against) and for the lovely and moving post.
    All best to you,
    Deborah

  5. Lisa says:

    What a strong post. All we want is for our children to be happy, comfortable in their own skin, and at ease when they’re so little. I know that seeing my own son get stressed hurts my heart.

    When I was reading your post I started to recall behavior of some of the boys that I knew growing up… Like snorting and throat clearing. And now I wonder if it was a reaction to stress and nerves. One friend in particular did this a lot and I haven’t seen/heard him show tics like this since high school. Maybe it is a developmental thing after all…

  6. Thank you for sharing your son’s story. I can totally understand why you let him sleep in your room with you! I definitely think parents know their kids best. You’re right, the thing he needs most if for you to love him and do your best.
    Amy from Occupation: Mommy´s last blog post ..Music: What’s your soundtrack?

  7. My son started tic-ing very noticeably this summer. It literally just started one day with this intense head jerk. I cried for almost two weeks when I saw him do it. He has so many other issue he is dealing with that seeing him tic so visibly was just too much for me. The head jerking has mostly stopped, but now he does throat clearing. Even that has diminished though over the last few weeks.

    So yes, I really relate to your post. Is there anything more painful than watching your own child suffer?

    Thanks for the great comment on my post. I actually agree with you regarding your comment about husbands. I wasn’t clear enough in my post, mostly because I know my family reads it and I didn’t want to be too nasty. My mother is whom I was referring to. My dad is the light of her life and always has, and always will come before anything and anyone in her life – to the point that she will support him even if he is wrong. I always knew that growing up. While I’m happy they have such an awesome relationship and share their life together, it still hurts a bit to know I will always come second to my own mother.
    Kristine (Mommy Needs Therapy)´s last blog post ..A book club inspired post – Brotherly Love

  8. Peggikaye says:

    what struck me was your inferrence that Tourette’s Syndrome is a mental illness. It is not. And if the doctors are treating it as such you need to get to a neurologist who knows better. It is no longer in the DSM IV .. it is not, in any way shape or form classified as a mental illness, it IS a neurological condition and they know the function/why of the condition.

    OCD is considered a mental illness .. and often accompanies TS (as it did in both of my sons) I am convinced (and as I go through schooling to be trained as a psychologist, my belief is strengthened) that one day, it too will no longer be a mental illness but classified as a behavioral manifestation of a neurological condition.
    Peggikaye´s last blog post ..Fear

  9. Peggikaye says:

    oh .. and the %age of those who make successes are slightly higher than that of neurotypical kids (working harder tends to lead to greater success) and %age of those who get into trouble is slightly less than that of neurotypical child .. equal to those who make more … a kid w/TS can get into trouble .. but they are no more likely (slightly less likely) than any child.
    Peggikaye´s last blog post ..Fear

  10. A touching post. I too agree that parents do know best. I remember a friend told me how his child got sick and they had him sleep in their bed, then two years later they finally got him out. I just could not believe it, and of course that was before I had my own kids. A friend of mine has some physical jerks and movements the doctors kept telling her parents that it was not just physical, mental too. Her mom knew better and she’s actually quite the genius, one of the first computer scientists. Reading this makes me think your child will do wonders.

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