When you see Crystal, Jordan or Paul walking down the street, you know
there is something different about them.
Crystal dresses with a lot of metal. She isn't a punker or anything,
and she doesn't have braces on her teeth, either.
Crystal uses leg braces and crutches.
Jordan has a great set of wheels!
It's not a bike he rides, but a wheelchair.
Paul is special too. He walks with a cane, but not like a rich person
does, and not because his legs have something wrong them. Paul calls his
cane Rodney and tells everyone that Rodney is his very bestest best
friend. Paul is blind and has a very hard time walking without Rodney.
When Crystal has a hard time picking up her pencil, her EA (a fancy way
of saying "helper") is understanding and gives her more time to do it,
or else she'll do it for her.
When Jordan takes 10 minutes to get ready at his desk, my teacher says
that his wheelchair gets in the way, and is harder to move around than
our bodies are.
When Paul has to put his things away in the same place everyday, the
kids in class say that it's because he can't look for his stuff. When he
walks in exactly the same places all the time, I'm told it's too hard
to remember more than one way to go to the same place when you can't see
around you.
Tyler has a wheelchair in his head. By the way, I'm Tyler. You can't
see me wheelchair when I'm walking down the street, but I do have one! My
wheelchair gets in the way of me doing stuff. Sometimes I can't get
started and I take longer to sit down at my desk, you know, like Jordan.
Only instead of my teacher saying "take your time, Tyler", she gets
'xasperated and tells me that I'm trying her patience and I'd better hurry
up or else I'll be in the hall agaqin.
When I walk in exactly the same places, or put my stuff in exactly the
same places, the kids say that I'm weird. If something is moved on
Paul, he gets very upset and sometimes even cries. The kids are always
asking him if they can help to put things right. When I get upset,
sometimes I can't stop crying, even when everythings back where I need it to
be. The other kids say that I'm a baby, trying to get more attention.
When Crystal can't pick up that pencil, it's because her muscles don't
work right. No one gets mad at her. When I can't pick up the pencil,
it's because I'm being "goofy" and I shouldn't fool around.
At least, that's how it used to be. My mom took me to a special doctor.
I call her Dr. Apples, because they're my favourite and she gave me one
as soon as we met. After she asked us alot of questions, we all sat
down. She used words that are hard for me to understand. I have something
called "Tourette Syndrome" and "Obsessive Compulsive Disorder". At
first I was scared that I might die or something, or that I'm crazy and
might be a psycho and get locked up in a hospital. Dr. Apples said that my
brain doesn't work like most peoples. It won't kill me, and I'm not
crazy or stupid. Whew! What a relief! She said that lots of kids and
Adults have it. She said that us that have Tourettes are different, and
that's what makes it so hard to find out what it is.
Tourettes or TS for short, makes me move my fingers and make sounds.
This is called "tics". Sometimes they look like habits, but they're not.
Because I move my fingers all the time, it's hard for me to pick up my
pencil. My hands are sore at bedtime, too. I'm not making sounds to be
goofy, I can't stop them, at least not for long. But when I'm working
really hard they stop. Mom says it's kind of like a hiccup that doesn't
go away, no one can control it, except maybe for a few minutes, but
usually they come back worse if you try! My tics are kinda like that. Dad
says I shouldn't worry about them, and I don't need to hide them. He
says it's better for me to tell others about it and how I can't help it,
instead. Dr. Apples said that sometimes it might go away for awhile,
like putting a lightbulb in a lamp, but not all the way, sometimes it
shuts off, but really it's always there. Just like I change and grow, my
tics could change, too.
My Obsessive Compulsive Disorder (OCD is easier to say) makes it harder
for me to get ready and sit down at my desk. You see, I can't sit down
until I look in my desk for spiders, three times. Then I have to count
all the desks two times before I can sit down. This takes more time
than just sitting down. OCD is why I walk in the exact same places and why
I have to have my stuff "just right", too. I have to keep doing it
until it feels right.
I have a special person helping me now. Joe says when I'm crying and
can't stop, even though everything's okay again, it's because I'm
"Looping". I'm stuck in a circle and I have to find a way to break out of it.
It's his job to show me how I can do that. He's helping me so I don't
get really really angry, and start breaking things, either. Sometimes
that's part of TS too.
Joe and Dr. Apples are part of my team to help me, my family, and my
teachers to understand and learn how to help. You know, so no one's
getting mad at me all the time for stuff I can't help doing. They're MY
team! They're on MY side! Mom 'splained to me that TS is like having a
wheelchair in my head. No one can see it, but it makes me special too. It
means I have different needs.
Joe says that I have a job to do too! It's my job to tell others about
it, so when you see me walking down the street you might not see
anything different about me. But when you get to know me, I want you to be
able to see under my tics and OCD's, not just the zany stuff I do.
Sometimes that's really hard. When someone is in a wheelchair, you know it's
there, but you try not to look at it and you concentrate on the person
instead. So, if you can remember that I have a wheelchair, than maybe
you can stop looking at it, and see the person that's the real me.
To Preston: This one is yours, my little Angel
For Camp Winston: Thanks to Denise for giving me the idea, and to Howard and Sherri-Anne for helping me to restore my faith in my own abilities. Following my heart is not easy, but you taught me that I'm doing it right. Candy and Carolyn: Thank you and God Bless.
To Sue, Allison, Jim, Lorraine and the rest of the BMSW #9. I still don't understand why I inspired you, but your support has made this story possible. Perhaps together we have inspired and helped others, but especially for the kids.
It was initially published in the 25th Anniversary Edition of "The Green Leaflet" spring 2001: Vol. 25: Issue 1, published by "The Tourette Syndrome Foundation of Canada".
And Reprinted with Permission in the "Today's Kids in Motion" Fall 2002: Vol. 3, Issue 2 published by BCS Communications Ltd.