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.
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.
Unfair to others.
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
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.
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.