Making Wrong Right: Tourette Syndrome Is a Disability
Friday, August 1, 2008 at 9:06PM We believe our son was suspended from school because of his disability.
I have waited nearly 10 months to type those exact words and publish them here.
I feel like I can type them now because our son's case has been accepted by the U.S. Department of Justice as a possible violation of Title III of the Americans with Disabilities Act (1990).
Bug has Tourette Syndrome.
This manifests in a variety of vocal and motor tics. Most of what he
struggles with, we never see. The internal flexing of muscles, the tiny
movements and imperceptible sounds.
He also experiences the waxing and waning of more noticeable tics.
These have included everything from complex variations in his
gait--having to march in place for 3 steps before being able to
proceed--to screeching sounds so painful they make him hoarse.
We believe he was asked to leave school because his disability wasn't quiet.
Because it was deemed distracting.
Difficult.
Unfair to others.
Uncomfortable.
Hard to put in a corner.
Now, Bug's voice is being heard. We hope that through his battle,
the voice of others who struggle with invisible disabilities will also
be heard.
Our son did not get to choose his disability. (Short of inflicting
an injury on yourself, I don't know how you would get to choose your
disability.) Bug did not get to pick something familiar or readily
apparent. He got stuck with Tourette Syndrome. Luck of the draw?
Genetics? Either way, it's a neurological disorder, often associated with OCD and ADHD. Nice, eh? Fun. A great way to make friends, blend in, make your life easier. Not exactly.
We are thankful that we live in a country that has seen fit to
legislate common decency, because not everyone sees fit to accommodate
those who are different, those who make us uncomfortable, those who
make us change the way we think about what's controllable.
We are hopeful that we will see true change come about as the result
of what happened to Bug. While it has been a horribly painful
experience for our family, we want nothing more than to make things
better for the next child, because there will always be another child.
A child who did not choose to have a disability.
A child who did not choose which disability to have.
A child whose voice may not be heard.
That child deserves a better world.
That child deserves to be welcomed.
Accommodated.
Understood.
That child deserves to be where other children already are--in
schools, stores, child care centers, theaters, and playgrounds. That
child deserves to be part of everyone's world--where everyone has a
right to be.
We know that if enough of us stand up, speak out, and advocate for these civil rights, things will get better.
If you would like to learn more about Tourette Syndrome, including how to accommodate a child with Tourette Syndrome in your classroom, please visit the Tourette Syndrome Association website.
Reader Comments (23)
One of my on-line businesses is training for preschool and child care teachers, and I will share the link with them.
It truly had not occurred to me that there might also be "unseen" tics experienced by those with Tourette or other similar syndromes, which makes me feel dumb, and I'm glad to have that awareness now. My youngest experienced tics and some OCD struggles for about two years following a serious car accident, so I have a hint of how children struggle and also how they are judged for something that is not in their control. I'm interested to learn more about TS, so thank you for bravely sharing!
The school insanity can't have been easy to deal with. Hang in there!
http://www.wrightslaw.com/
It's absurd for a school to suspend a child for tics. Horrible. Apalling.
Best of luck with the case.
I also know in my heart that in this case, they are capable of change. I've seen them change before, and am cautiously optimistic they can do it again. At the very least, I have to try. It's what enables me to live with myself. It is what I promised to my son.
If we don't educate or advocate, we cannot expect change. Behavior can change in light of new information, especially if there's motivation. Sometimes that motivation comes from within (ideally), sometimes it has to come from the external (unfortunately).
I applaud your post, and wish you the best of luck in the fight!
I have a daughter with Tourettes and two more children who have not been officially diagnosed but exhibit Tourette symptoms.
I saw your comment on Baby Center about wanting to put together a list of blogs that feature Tourette Syndrome. I would love to help you with that. I'm tired of feeling alone.
Besides my personal blog I also write for 5 Minute for Special Needs. I see our badge in your sidebar so maybe you've read some of my posts?
I have struggled with TS and a few more associated neuro problems almost my entire life and as an adult I am just now beginning my own quest to truly learn about it and hopefully find the help I need that my parents didn't have the access to in the 80's.
I rarely leave the house and have slowly decreased my social encounters all because of my tics and my own embarrassment about not being able to control them. Not so much I am ashamed of having it, but even adults can be cruel when they do not understand my problem. A lot of my negative feelings towards my condition stem from my childhood and a lack of understanding by both myself AND society.
I am thrilled TS is finally coming into the light and more is being done about researching and educating on it rather than it only being acknowledged when it is being mocked on TV or a movie as something funny!
I wonder though, how should a teacher handle such a situation? If it would happen that a tic makes it impossible to keep the children's attention on the teacher what should be done?
Alyssa,What's fair is not always equal and what's equal is not always fair. Your employer may need some education about what their responsibilities are with regard to your disability. I would recommend contacting the Tourette Syndrome Association and your regional Americans with Disabilities Act office. Both have resources, often free, available to employers to assist them in being compliant with state and federal disability laws that provide accommodations for individuals with Tourette Syndrome. Let me know if you have any trouble locating these resources in your area.
I would strongly recommend connecting with a local chapter of the Tourette Syndrome Association and also utilizing their online resources. They have a wealth of information regarding the latest in treatment research for TS, as well as information about dealing with employment issues. I have used their Question/Answer services myself in addition to their publications.
I remember one incident in the 2nd grade when I was making squeeking noises during quiet work time, and my teacher came over to me and told me to stop. It really bothered me at the time, obviously. I redoubled my efforts to suppress it, and had limited success. But I got nothing done because I was so distracted.
But in retrospect, looking back as an adult, it's hard to miss where my teacher was coming from. I myself have had to work with annoying noises around me, and it's not easy. So of course my teacher would want to avoid that for her students. (BTW, she was actually quite understanding, for the most part, and is one of my favorite teachers I've had).
It's not an easy problem. I think it's really easy to just say "accommodate at all costs", and especially when I'm the one suffering for it that's certainly how I feel. But I don't think it's really that simple.
Thank you. It was a battle well worth fighting.
I'm so glad that your children have such a fantastic advocate.
*hugs*