My name is Karen and my son Zackary has Tourette’s Syndrome. When Zackary was 5 years old, a neighbor of mine asked me why he squinted so much. My first thought was maybe he needs glasses. As the weeks went by, I started to notice other things: He would clear his throat over and over again, and he would shake his head and extend his arms and shake his hands.
When I asked him why he was doing this, he would always answer with, “I don’t know.” I took him to a pediatric neurologist. Sitting there waiting to find out what was wrong with my little boy was one of the worst moments of my life. When the doctor told me my son had ADHD, OCD and Tourette’s Syndrome, the first question I asked him is now the first question I am asked when I tell anyone about his diagnoses: “Is he going to curse?”
Back then that is all I knew about Tourette’s Syndrome. I left the doctor’s office and immediately set out to change that. I read everything I could about Tourette’s. I did all the webinars I could find. I started keeping notes of his different tics and how long they lasted. I was determined to understand this thing that had taken over my little boy’s body and do anything in my power to help him.
My doctor told me when Zack was diagnosed that it would get 100 percent worse before it got any better. He was right. It has been almost 2 years, and I have watched my son getting worse — sometimes by the day, it seems. He has pulled muscles in his sides from ticking, thrown his head back and forth so hard I was afraid he would hurt himself and become extremely verbal.
I have watched as strangers have stared at my son and pulled their children away from him as if he had something they could catch. Tourette’s has changed all our lives so much. We have had to do things like put a booster chair in our kitchen for when his tics are really bad so he doesn’t hit his face on the table. Stairs have become a constant source of stress; I am always so worried he is going to have a tic and fall down them.
My other children have had to adjust to Zack’s different tics and have learned to be patient with him when he is having a bad day. They calm him down when he is having an “outburst” and are his greatest protectors.
The one thing I always tell people about Tourette’s is it is never the same, not from person to person or day to day. Tourette’s is a constant learning experience for me. Every day brings a new set of challenges.
It breaks my heart to hear what your son had to go through. No child should ever be punished because of something they can’t control. I had a problem almost from day one with my sons kindergarten teacher. She made my son sit on a rug in the middle of the classroom and “tic out”. The other kids thought he was just being bad. Also the touching because of the ocd was a big problem. I forced my school to child study team him and while they were I home schooled him. That was also a problem because when the test came back he tested 2 grades higher then a kindergartner. I fought my school to the state level to not only give my son an IEP but a personal aid. It took almost a year. My son is now in a 2nd grade class, with the help of his aid he is thriving and doing very well. It sounds like your son is in a wonderful place right now. I am so happy for him. Thank you for sharing the links, it is very interesting. I will share it with other TS moms.
Thank you again and bless you and your son!
Karen
I can totally relate! My son, Joshua, is now almost 12 years old and in 6th grade. When he was in 3rd grade his tics were mild and controllable in school. He did very well, was loved by all and had been in regular classes since kindergarten. In 4th grade, things started to change – he was growing and changing and so were his tics. His OCD was difficult to control. He got in trouble for “touching” a girl – because he had accidently brushed her leg with his hand sitting next to her in the cafeteria, he had to touch her again to “even things up in twos.” He also developed coprolalia. The school had NO idea how to handle the situation. The teachers were awful. One teacher from an adjacent classroom marched into Joshua’s classroom pointed at Joshua and told him in front of his peers that he was disrupting her reading class! (the students in class said to themselves “doesn’t she know he can’t help it?” He was humiliated. The parents were awful and wanted Joshua out of that school. This wondeful boy who always went out of his way to help anyone – even volunteering to help take care of other disabled children – was now being relabeled in a very negative light. It was breaking his heart and mine too. He also came home crying and dirty from being thrown to the ground and beaten up because his friends couldn’t understand why all of a sudden he was calling “them” racially inappropriate names (he never did before – so how was this “sudden” manifestation something he coudn’t control? – though I did immediately go out and explain the situation and did not reprimand them too harshly and they were very kind to him afterwards) Anyhow, back to school…The administration quickly (within the month) found another public school with a program for special needs kids and he was placed in an inclusive classroom at that school. This turned out to be a HUGE blessing because this school was fabulous and in a much better neighborhood! And as a result, the middle school he now attends is wonderful and caring as well. His bus ride is almost an hour each way but it is worth it! We found a medication that controlled the coprolalia and the OCD and he was so happy. Also, he is NOT in an inclusive classroom this year. He is back with the regular kids and he loves it.
I wante to share some information with you… I am looking into this for my son right now and hope to have the money to do this soon… please take a look at these videos… it could change your child’s life. I’m hoping it will change mine soon as well!
http://www.tmjstack.com/casereport.pdf
http://www.youtube.com/watch?v=JGlDCyZGkoc
http://www.youtube.com/watch?v=SE2x37pWw88&feature=related
Pricing for the appliance is as follows:
$300 consultation
$4,160 for lower appliance or if also need upper appliance $6,660
$490 for MRI – if no insurance coverage
Monday – 1st visit – Impressions are made and a CLOSED MRI of the TM Joints – Films and reports sent to Dr. for Tues.
Tuesday – XRAYS – Panoramic and 8 Tomographic plus other digital pictures
Wed – Lower Appliance is fitted
Thurs. Morning appt – final check up
Thursday Afternoon appt – Final tweeking of appliance if necessary
CLOSED Fri and Sat.
MRI – (703) 356-4900 – Tyson Corner Diagnostic Imaging
PLUS all additional hotel and air travel expenses
If you consider how much medications can cost over a lifetime, this really isn’t alot. It just is difficult to come up with up front. :)
Thank you for sharing your story…
God Bless!
Sonia
Sonia,
Best of luck with the appliance treatment. Please keep us updated as to how it works out.
Kevin