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Friday
Aug012008

Making Wrong Right: Tourette Syndrome Is a Disability

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.

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    [...]califmom - Califmom - Making Wrong Right: Tourette Syndrome Is a Disability[...]

Reader Comments (23)

I'll stand by you! FTW!

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!
August 1, 2008 | Unregistered CommenterDeb on the Rocks
You go girl! DOn't mess with a momma bear and her cub er bug.
August 2, 2008 | Unregistered CommenterAdrienne
I came for photo hunters but I am a retired special education teacher and this stuff makes me so angry. Good for you that you are fighting. Tourettes is so misunderstood. They really suspended him? That makes me furious...
August 2, 2008 | Unregistered CommenterMichelle
This is the single best resource for information on educational rights. The husband is an attorney and the wife is an advocate. It is chock full and easily applicable...



http://www.wrightslaw.com/
August 2, 2008 | Unregistered CommenterMichelle
I'm sorry you've been going through this. It's amazing with all the advances, what our kids still have to put up with due to ignorance, in the school place no less.You're a tough cookie. Good for you for advocating for him.
August 2, 2008 | Unregistered CommenterZip n Tizzy
From a mom with a son with Aspergers and ADHD and a few other abbreviations, it horrifies me to hear of other kids treated like your son was. I just found your blog. I'm looking forward to reading more. It sounds like we have a lot in common!
August 3, 2008 | Unregistered CommenterKristine
School is one of the worst places for someone with Tourette's Syndrome. But it does end, eventually.

It's absurd for a school to suspend a child for tics. Horrible. Apalling.

Best of luck with the case.
August 4, 2008 | Unregistered CommenterColin
A small warning. Allow people to be idiots. They'll never stop, they'll never change. So you might have to change. You might have to accept many people's insensitivity in hopes that a few of them might be able to accept Bug.
August 4, 2008 | Unregistered CommenterET
ET,I think I'm more okay with people being idiots when their actions impact a fully-formed adult. I'm not too keen on it when my child is involved.

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).
August 4, 2008 | Unregistered Commentercalifmom
I'm absolutely fascinated by differences of this kind, especially in children, and I'd love to hear more about it. I feel like all children should be allowed to be Who They Are, truly. I dream of a world where differences are cherished.
August 16, 2008 | Unregistered CommenterAspieMom
It is very sad that things like this happen to our children. At Jaysen's school, they were willing to "accept" Jaysen's tics/stims as long as they were "unobtrusive". Somehow I couldn't find a way to tell Jaysen he has to only do his quiet stims/tics at school...*sarcasm*

I applaud your post, and wish you the best of luck in the fight!
August 18, 2008 | Unregistered Commentermommy~dearest
I'm so glad I found you! I was in the special needs session at BlogHer and wanted to introduce myself after it ended but it ran over and I had to be somewhere else.

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?
August 29, 2008 | Unregistered Commenterslackermommy
I am SO excited that I stumbled upon your blog while blog hopping. I am in shock and very PO'd at reading what happened to your son and also admire you for standing up for him at such great lengths!!

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!
September 3, 2008 | Unregistered CommenterO'Neal
The school knew he had Tourette's and still suspended him? That's messed up.

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?



October 6, 2008 | Unregistered CommenterKayla
I, myself have tourette syndrome. I am 20 years old so i have made it through most of my school years, and they learned to accomodate me after years of fighting with the administration. my problem now is in the workplace. where i work we revolve around a point system and missing work accrues points. i have had many bad spells lately and have gotten written up a few times for it. Unfortunately, unless you have been at my place of employment for over a year you are not eligible for FMLA to cover my tourettes! They have told me that they have to treat everyone the same, only not everyone IS the same. and i have brought that to my supervisor and manager's attention many times. i believe we all should be treated FAIRLY...but there is a big difference in treating someone the same, and treating them fairly! i would really appreciate any advice you could give!
January 31, 2010 | Unregistered Commenteralyssa


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. 
January 31, 2010 | Unregistered Commentercalifmom
califmom,I appreciate that your so willing to help! I actually went to my HR department and both my manager AND my supervisor got in big trouble for what they were doing to me! I ended up being the "Grand" exception for my place of employment to get on FMLA before being there a year, and they made many accomodations for me after that. I was able to take a break when needed without being timed or getting in trouble. Unfortunately, I ended up having to quit due to my tics getting HORRIBLY worse day after day. My job was about 40 miles away from where i live and it wasnt worth it for me to go in and only be able to work an hour a night because i would have an attack every night! I have been hospitalized recently for my Tourettes and have made many trips to the emergency room! within a 10 day time period i was hospitalized after sitting in the e.r for 7 hours with nothing able to calm me, and then two more trips to the e.r...all within that 10 days! I really dont know what to do anymore to calm them and I cant seem to find a job because Im usually ticking whenever I go to an interview and they always tell me they have found better applicants. When i have a feeling they wont hire me because of my Tourettes, but I have no proof!
May 20, 2010 | Unregistered CommenterAlyssa
Alyssa,



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.
May 20, 2010 | Unregistered Commentercalifmom
Yeah, this is one of the tricky things.I have tourette's syndrome, and it was pretty bad when I was a kid (I'm now 25, and things are pretty well manageable).

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.
May 26, 2010 | Unregistered CommenterCessen
Califmom: It makes me so happy to see that you are standing up for your son and fighting the good fight. I have suffered with Tourette's Syndrome since the age of 5 (I'm now 40). It breaks my heart to hear stories about children who are discriminated against because of this condition; I guess because I can truely relate to what they are going through. It also makes me sad that so many adults live with this condition and feel that they have to hide in their homes and withdraw from the world. I am a succesful executive in the healthcare industry...despite having Tourette's Syndrome. Sure, people have complained (it's "bothersome", "disruptive", "scary" (I even sued one of my former employers over it); but these narrow-minded people are not going to stand in the way of me doing what I want to do in my life. All of those complaints are personal issues that THEY have; not my issues to deal with. As my mom always told me "if they don't like it they don't have to look at it"! I commend you for supporting your son's struggle; know that you are doing the right thing and you are a great mother to your son!
July 23, 2010 | Unregistered CommenterJohn


Thank you. It was a battle well worth fighting. 
July 23, 2010 | Unregistered Commentercalifmom
I knew you homeschooled, I'm not sure if I knew you'd been forced into it by a school that couldn't/wouldn't help.

I'm so glad that your children have such a fantastic advocate.

*hugs*
September 30, 2010 | Unregistered CommenterAl_Pal
In my family we have a full variety of mental and learning disabilities that make succeeding in school very difficult. I think the biggest problem with loud and obvious Tourette's is the cruelty of school age children not understanding what is different, but also the distraction and difficulty in other students being able to learn with noisy distractions. For instance, a kid with Attention Defficent would have a very hard time coping in a noisy classroom that prevented them from being able to focus. So, is one child's disorder more or less important than anothers?
February 1, 2011 | Unregistered CommenterAudi

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