Tuesday, March 20, 2012

running for a cause

when jordan was about five we mentioned to his pediatrician that he was making some repetitive motions.  sometimes clapping or jumping.  sometimes moving his head or blinking.  we thought it was strange.  we thought it was voluntary. we wanted him to stop. 

she said that tics are very common in boys especially around 6 or 7 years old.  it will come in waves.  but it should go away.

they stuck around. sometimes they were big and sometimes they were small.  we also started noticing some compulsive behavior sniffing things, wanting to touch things on the stove, doing things in a numbered fashion.  it was bothersome to have to see it over and over. and we would get frustrated not really knowing what was causing them.

i remember asking him if he noticed the tics.  he said, "yes, but it's something that my body wants to do."

every time we mentioned it to the dr.  she said they were common.  but if we noticed vocal tics that lasted more than six months we should let her know.  it would require more investigation.
over the years the tics changed sometimes having more than one at a time.  and then we started hearing the vocal tics; throat clearing, clicking his tongue, grunting.   we talked to his teachers who said that they noticed the vocal tics but his classmates were never bothered by them or asked him to stop. it was just part of who jordan was, and everyone was ok with that.  but we knew that the addition of the vocal tics meant something more serious.

after putting it off and hoping for the best it was time to see a psychiatrist for an official diagnosis and maybe some help.  the dr. talked to us about his symptoms, his behaviors and how he was doing in school.  he talked to jordan about his tics, his friendships and his feelings about what was happening.

in the end the dr. said there really wasn't anything we should do.  maybe some breathing exercises to calm his anxiety, watch his ocd and if we felt it was causing problems, which it wasn't, to bring him back.  there was no need for medication.
we all breathed a sigh of relief.
i remember saying, "oh wow, we thought it might be tourettes."
and the psychiatrist saying, "it is."
yes, he has tourettes, but it's mild and he's doing great and it will get better.

and that was that.  we left the office with an answer.  maybe not the one we were hoping for, but it actually didn't seem so bad.

we've already been through a lot with him.
jordan had amblyopia and had to patch his eye.
he had surgery to remove a bone in the roof of his mouth.
he has hashimoto's disease and has to take medication everyday.
he was almost born at 24 weeks.
but he made it through.

so, we didn't cry.
we didn't get angry.
we just moved on.

what else could we do?  he was in the best school where we knew he was cared for and they would intervene if any of the kids every teased him or made him feel bad.  jordan was aware of his tics and knew that it didn't make him weird.

he told me once that he wished he didn't have the tics.  so do i.  but if that's the worst of his problems, we'll take it.
jordan is a straight "a" student.  he plays sports, has lots of friends and is a very confident young man.  he can stand in front of a large group of people and participate in a spelling bee, a mock trial or sing in the school musical.  he plays the drums and has read more books than i have in my lifetime. he is compassionate and loving and kind.

and he has tourette syndrome.
but that doesn't change a thing about who he is.

on may 12 i am running the santa inez 1/2 marathon.  i am choosing to run to raise money for the tourette syndrome association.  you can read more about the organization here.  and you can sponsor me in my run here.
we are so lucky that we have been able to get through this without medication or other intervention.  it was "mild" enough that it hasn't affected his behavior, his academics or his self esteem. we feel like the worst is behind us and he will only get better from here. but there are many people, kids, parents, friends who are dealing with this issue.  and we want to help in any way we can.

thanks for letting me share our story.


Mackenzie said...

We love that boy just the way he is! Beautifully written, Betty! And thanks for sharing his story.

Sharon said...

wow...I almost don't know what to say...life sometimes deals us a heavy hand and I have always felt that God is not so concerned with our circumstances but more so as to how we conduct ourselves through those circumstances. With parents like you two and a positive attitude Jordan can overcome!

Kate said...

Thanks for sharing this story with us, Betty. Beautifully, lovingly written. With such a loving family, Jordan may have struggles, but will always thrive. Good luck with your half marathon!