Table of Contents

The arrangement of interviews is, in some ways, arbitrary.
Each individual spoke about many topics.
The Tourette Association of America (www.tourette.org) is the new name for the organization that provides public awareness, research funds, and support for individuals and families dealing with Tourette syndrome. The Association’s name changed while I was conducting the interviews, so most people use the old appellation, Tourette Syndrome Association (TSA).

Foreword

Paul Devore, former Chairman of the Board, Tourette Association of America

Introduction

Chapter One — My Story

Chapter Two — Romance
Annie and Oreya, 31 and 35 years old
If it wasn’t for Tourette’s, we wouldn’t know each other.


Chapter Three — Mothers and Children
Laura and Nevin, 14 years old
As a mother, we hold the family together.
Kathy, about her son Matt, 33 years old
It’s so easy to think you’re a bad parent.
Rosemarie, 45 years old
I hear a lot from people, “I don’t like my Tourette’s.” Well, no one says you have to like it, but you might as well accept it.
Jeanne, Rosemarie’s daughter, 21 years old
Mom always told me, “Don’t let anyone bother you.”
Tori, about her son Ian, 25 years old
You don’t have to feel bad if your kid has these problems.
Yvonndy and Richard, 19 years old
I have a mother’s heart.
Rosie, about her son Javier, 23 years old
Hardly anyone understands this position, being the mother of a Tourette syndrome child.
Jen, about her son Jacob, 14 years old
I think of my son as the face of hope.
Michelle, about her son Anthony, 6 years old
The behavior is bad and the child is good.
Meg and Ben, 17 years old
Everyone looks up to you for your courage.
Also see Lynn and Andrew (CBIT) in Chapter Ten


Chapter Four — Disability and Society
Bill, 48 years old
As a doctor, my prescription has always been to treat Tourette’s by treating society.
Andrew, 37 years old
Tourette’s is a disorder of other people’s perceptions.
Matthew, 45 years old
There’s so much more to a person than the immediacy of tics.
Jaesy, 28 years old
I’ve wished society were more inclusive. I guess that’s our goal, to change it.


Chapter Five — Tourette Syndrome Camp
Sydney, 21 years old
Tourette camp was a life changing experience for me.
Molly, 24 years old
That’s what I’d recommend to any kid with Tourette’s—go to a camp.
Scott, 51 years old
One week at camp and kids get fifty-one weeks worth of confidence.
Shayna, 24 years old
We are a tribe.
Jonathan, about his son Sam, 13 years old
Having faith and taking the long view is key.


Chapter Six — Education, Advocacy, and Activism
Kevin, 44 years old
Everybody should do their part raising awareness.
Chris, 38 years old
I’m on this Earth for a reason.
Daniel, 43 years old
Everybody has some thing in their life they struggle with.
Leslie, 17 years old
If you feel awful, and you hear some else’s story, you might not give up.
Lynda, 45 years old
I believe people should look at the whole person, not just the disability.
Guy, age not stated
It’s refreshing to talk to young people because they’re so open for ways to work with Tourette’s.


Chapter Seven — Misconceptions
Rose, 19 years old
It takes strength to have this strength.
Arthur, 30 years old
People don’t realize that Tourette’s isn’t just hootin’ and hollerin’ and moving around. It’s very painful.
Britney, 24 years old
You have to look past the tics.
Jonathan, 61 years old
Empathy is much better than sympathy.


Chapter Eight — Creativity
Jamie, 20 years old
I perceive the world in a way other people can’t.
Carrie, 28 years old
When you get picked on, when you get laughed at, when you get mocked, it forces you to build character.
Sutie, 33 years old
There’s a lot to admire about our resilience and strength.
Gary, 76 years old
Now I have lots of friends with Tourette’s.
Chelsea, 23 years old
My reflexes scare me they’re so fast.


Chapter Nine — Change
Sharon and Jad, 13 years old
When you see someone like that, it’s like he’s telling all the children and people out there to never give up.
Sharon and Jad, 20 years old
I could finally say, “You know what? I have Tourette’s. You got a problem with it? I don’t really care.”
Maria, 18 years old
I don’t want to do something just because it’s easy.
Maria, 19 years old
I didn’t feel safe.
elsie, 58 years old (she prefers her name lower case)
Tourette’s has me.
Elsie, 59 years old (she now prefers her name upper case)
I now have an experience of possibilities, of hope, of things that can change.


Chapter Ten — Alternative Treatments
Carlie, 28 years old (Deep Brain Stimulation surgery-DBS)
I still think, “How is this possible?” It’s such a gift.
Kevin, 33 years old (Deep Brain Stimulation surgery-DBS)
I’m finally at that stage where I know who I am, and I’m comfortable in my own skin.
Kayley, 20 years old (Deep Brain Stimulation surgery-DBS)
The most important thing you can do for yourself is be engaged in life.
Lynn and Andrew, 11 years old (CBIT and mouth orthotic)
We’re in a perfect place to say we can handle it.
Shayna, 24 years old (Service dog)
There are so many tasks a dog can be trained to do to improve my life.
Jodi, 47 years old (Service dog)
People do not appreciate the strength it takes for us to make it through the day.
Rachel, 35 years old (Meditation)
I found my way to meditation out of necessity.
Joanne, 53 years old (Meditation)
I meditate on my own almost daily.
Craig, 55 years old (Biofeedback)
Not too mad, not too sad, not too glad.
Samantha, 58 years old (Homeopathy)
Tourette’s just happened to me. It was not due to anything I did. Why should I be ashamed of it?
Brynne, 25 years old (Homeopathy and Noise-Cancelling Headphones)
When I suppress my tics I feel like I’m denying myself.
Also see Elsie (body work) in Chapter Nine.
Also see Mori (DBS) in Chapter Eleven.


Chapter Eleven — Faith
Fish, 38 years old
Our words have power and if we decide that we’re broken, then we’re broken. If we decide that we still have a lot to offer the world, then we do.
Albert, 40 years old
Unconditional acceptance is ultimately the best thing to help a child succeed with overcoming their Tourette’s.
Mori, 44 years old
The worst thing is to believe someone else’s idea of what you can do.


Chapter Twelve — Worldview
Stephen, 57 years old
You come to recognize the power within your own being, that is shared by everyone, to create and see your world.
Lauren, 33 years old
Have a little hope.
David, 25 years old
Giving up was a mistake.
Bob, 67 years old
I feel I’m isolated but I’ve come to accept it.
Ken, 43 years old
Don’t let Tourette’s stand in your way.
Alma, 40 years old
The whole point is to know I’m a good person.
Jonathon, 34 years old
You gotta get to tomorrow.

Appendix A: List of Tourette Syndrome Camps in the United States.
Appendix B: Useful information drawn from the interviews.
Resources:


© SQ Press, Larry Barber, 2016.