Elle Cosimano

What Makes You Tic? — Part I

Yesterday marked the beginning of Tourette Syndrome Awareness month.

I was sad to see James Durbin leave American Idol last week. His talent has opened so many eyes to Tourette’s, but I’m optimistic that he’s peaked some curiosity out there, and that his fans will take a step deeper into his world by learning more and spreading awareness.

If you know me, or you’ve followed my blog, then you know Tourette’s awareness has a special place in my heart.  I thought long and hard about the kind of contribution I could make toward TS education.  Book recommendations seemed like the obvious choice.

So this month, I’ll share a few of my favorites books featuring characters who suffer from Tourette’s (Children’s, MG, and YA), as well as links to organizations that provide resources for families, teachers, and friends of children suffering from tic disorders.

(Click on the blue banner below to learn more about the Tourette Syndrome Association.)

What Makes You Tic?

 

My first recommendation this month is an outstanding fictional novel for young adult (and adult) readers.

Jerk California

JERK, CALIFORNIA by Jonathan Friesen– Available from Penguin/Speak

Winner, ALA 2009 Schneider Family Book Award~”Best Book for Teens”

 

“Sam Carrier is one confused kid. The high-school senior has Tourette’s Syndrome messing with his body, Naomi Archer messing with his heart, and a dead dad messing with his mind.

Sam takes off on a road-trip to California looking for some peace. Each stop brings Sam and Naomi (yep, she comes along) closer to a truth Sam doesn’t want to face, but can’t run from anymore. It’s the adventure of a lifetime, and his last chance to find out whose he really is.”  — http://www.jonathanfriesen.com/


I’m not going to spoil the book by revealing too much of the plot, except to say that the author takes his character on a remarkable and inspiring journey of self-discovery.  Sam Carrier’s cross-country search to uncover his family history mirrors an internal journey as he grapples to understand and come to terms with his Tourette’s.

There are two reasons I love this book. First, Sam’s symptoms are woven into a broader plot arc. His tics (and all the baggage that come with them) are part of him, as they are part of the story.  But they are neither all of him, nor all of his story.  There is a greater overarching story than a boy overcoming the challenges of his TS. It’s about families and love, secrets and acceptance. Sam’s character and his journey are layered deeper than you might expect.  The same is true of people with TS.

Which brings me to the second reason I love this book.  Sam’s voice is compelling and believable. The author drew me straight into his character’s mind and heart.  Too often, people recognize Tourette Syndrome by what we see on the outside.  But so much of TS happens on the inside.  Friesen takes us, through stunning prose and poignant memorable scenes, into Sam’s head — his obsessive thoughts, reactions, frustrations, and shame.  Not just the physical pain, but the battles inside as he struggles to find happiness and sense of belonging. Through them, we discover a bright, courageous and likable young man… who happens to have Tourette Syndrome.

Jerk, California is high on  my list of favorite YA novels. It’s thoughtfully crafted, emotionally evocative, and tells a beautiful story.


Tale of a Reluctant Reader

My 8 year old son was a reluctant reader. A VERY reluctant reader. But he also has some VERY unique challenges.

My son has Tourette Syndrome, which causes his body to experience frequent motor and verbal tics. He is unable to control or stop the blinking, facial grimaces, eye rolling, loud and persistent sniffing, shoulder shrugs, leg squats, hand motions, toe curls, and abdominal crunches. Nor is he able to silence the constant repetitive counting and intrusive thoughts inside his head.

Given all that, could you really blame him for not wanting to sit still over even the best of books?

I was beginning to wonder if he would ever enjoy reading. If he would ever curl up in a sunny window with a favorite book and escape for hours into his imagination, as I often do. Or if he would always dread it as though it were some torturous punishment he was forced to endure. The very thought of all he’d be missing broke my heart.

One day, on a whim, I picked up the first three books of The Magic Tree House series by Mary Pope Osborne. The chapters were short, the print was large, and the subjects were fascinating and diverse. The covers promised intriguing tales of mummies, dinosaurs, and knights. Magic and mystery all woven into simple stories with likable heroes. He read the first one — reluctant and slow — and actually came back for more… on his own!

Eureka! I’d found books he liked enough, even for all his discomfort, to READ!

As luck would have it, he’d just been assigned his very first book report. He chose to do his report about The Knight At Dawn (Book 2 of the Magic Tree House series). My mother spent hours laboring over his book report with him. We made him color-coded flashcards, and colorful props, and listened while he practiced in front of our family. Speaking in front of a group (as you can imagine) is no small challenge, but he was proud of his book report and tackled the presentation with a knight’s poise and a hero’s courage.

Bag and Props

And he still wanted to READ!

I decided to strike while the iron was hot. I googled the author, the series, and even fanned them on Facebook. We found the tour dates for The Magic Tree House Passport to Adventure. It was coming soon to our state! So I did what any overzealous Type A mother would do… I scheduled a field trip.

It was a long journey to the big city where Jack and Annie, the main characters in the series, were scheduled to appear. In preparation, we downloaded four of the Audiobooks so we could listen together in the car. And we drove two hours to Fairfax, VA, to meet Jack and Annie in person!

Jack and Annie

Connor and his Book

The actors performed a few musical numbers for the kids, and talked with them about the joys and benefits of reading. The children were told they could all take a Secret Oath, committing to do three simple things in order to become Reading Ambassadors:

  1. Read 5 books in the next 30 days
  2. Carry their reading passports with them and record the books they’ve read
  3. And help someone else learn to read

 

Great lessons, even for adults. What I heard was:

  1. Set a goal for yourself
  2. Measure and keep track of your progress toward that goal
  3. And help others along the way

 

Suddenly, reading was full of texture and color and sound and movement. It was meaningful! There were real faces he could associate with the story, and they were standing close enough to touch him!

At the event, I purchased my son the newest release in the series, a beautiful hardback book with a colorful jacket. The actors signed his book, presented him his passport, and allowed us to photograph him with them. He was so thrilled (and not just because he thought Annie was beautiful or because he thought Jack was actually Daniel Radcliffe!)

Signing

My son has since informed me that he plans to read the entire series… all 45+ books… himself. And I couldn’t be happier about it.

He loves to READ!

There is hope for even the most reluctant reader. And I am eternally thankful to the children’s authors whose creativity makes reading an enchanting experience for my kids. Extra special thanks to Mary Pope Osborne, Jack and Annie, and the bookstores who support events like the Passport Adventure! You truly put the magic in the Tree House stories!

… Who Shall Not Be Named

“Call him Voldemort, Harry. Always use the proper name for things. Fear of a name increases fear of the thing itself.”

— Albus Dumbledore

There is power in a name. Ask any faerie. To know a faerie’s name is to wield immeasurable control over him. He will not give it to you willingly.

Why? Ask any student of Hogwarts and they will tell you the story of “He Who Must Not Be Named”. The Dark Wizard’s name invoked such terror, other wizards dared not speak it, fearing it might invite evil upon them. Yet Harry Potter, the boy who lived, confronted his enemy. Harry called him by name. He spoke it aloud. Voldemort! And by doing so, claimed control of his fear.

And sometimes — in our less than supernatural world — we must do the same. By naming our enemy, we solidify our understanding of it. We give it shape, identity, and definition. We take smoke and fear and confusion and we ball it up in our hands until it is something tangible. What we can touch, we can influence. What we can hold, we can control.

A year ago, my oldest son was diagnosed with Tourette Syndrome. A neurologist (who will not be named… I know, I know… but it’s a necessary concession to the dark powers that be) told us we would be better off if we didn’t diagnose him at all. In his professional opinion, Tourette Syndrome carries too many stigmas for an eight year old boy to bear. He felt it would be better not to call it Tourettes. We should simply tell people that he has tics. Perhaps he would outgrow them, he’d said.

We tried this route for a while. It hovered over us, casting dark shadows, an evil without a name. It had no definition, and because there was no definition, there were no answers. When my son asked, “Why does my body do these things?” I had no response. We were grasping thin air. We had no finger-hold. No way to contain or control the enemy that caused my son’s body to perform embarrassing movements and noises. Because we couldn’t explain it, no one else could understand it. Fear and prejudice were born of ignorance, and the teasing began. By denying the name of our enemy, we left our son without a weapon. He had no tool to control his fear, or the prejudices of others who couldn’t understand why he made strange faces and why he couldn’t sit still.

So we changed battle strategies…

We told our son that he has Tourette Syndrome. We armed him with information and facts. We consulted teachers like Brad Cohen, authors like Dylan Peters, listened to speakers  like Marc Elliot, and other kids with TS. We educated his peers, his teachers, and his friends about it. We gave our enemy a face. We gave our son back his courage and his pride.

Now, my son is surrounded by friends and teachers that support him. They clearly identify his enemy and they’ve got his back every day. He is a member of his school’s Distinguished Honor Roll. He says he doesn’t notice his tics anymore, because he’s too busy and having too much fun to care. My son is the boy who lives.

In our home, we call Tourette Syndrome by its name. And we control our fear of it. If you know a child or parent that needs help understanding and educating others about Tourette Syndrome, the Tourette Syndrome Association can help.

Dec

10, 2010 |

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