This is the finale of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son. You can read part 1 here, part 2 here and part 3 here.
I have learned a lot when it comes to how individual-based Tourette’s can be. Though there may be many common denominators, the tics and disorders vary with each individual. My son’s current tics are knuckle cracking, toe cracking, shoulder shrugging, eye flinching and tapping or touching. He also has a hugging tic. He only does this tic when he is around people he connects with.
He also has three very odd, but very real daily tics of “I love you mom,” “You are so beautiful” and “You are the greatest.” It is absolutely a great thing that it is not Coprolalia. If you were around us in a room, you would see the hug in combination. Yes, they are confirmed tics and he has had them for a few years.
His little sister is not happy about his tapping/rubbing on the top of her head made just for her. I feel very fortunate that his tics are mild in comparison with how challenging and difficult other people with TS are faced with.
I threw myself into educating and advocating when my son was diagnosed. I volunteered to open up a stagnant support group under the Tourette Syndrome Association Northern California and Hawaii Chapter. I have been the organizer and leader of the Greater Sacramento Support Group for just under four years.
The empowerment I have had since his TS diagnosis has made a big difference in getting the support and resources my son needs. I am very appreciative of the support I have from the Tourette Syndrome Association. I take every opportunity to bring awareness with Tourette’s any opportunity I have.
I am often met with surprise when they know Spencer has TS because of all the stigma. Often the media portrays Tourette’s with the more extreme cases of complex tics and nothing more. This can be very frustrating with my son because there are some who don’t take it seriously or get it.
My motto that I often quote is “Tourette’s is much more than just tics.” I am aware tics can be very disabling, but it is not the only challenge those with TS have. Every day can be very challenging for the one fragile nerve I have left.
I live day to day doing the best I can with the circumstances given. I have accepted and am okay with my not being nominated for the “Best Mother of The Year”. I do believe I am the best advocate for my son and will fight for him like no other can.
We have been raising our son (13) now with tourettes with absolutely no support or understanding from the outside (sadly..family included) We have basically erected walls of protection around him and shut out all ignorance. I pulled him out of school in the 5th grade to be home schooled and dysgraphia is making him miserable in terms of school work. I would love for my son to meet other kids that have TS but there just doesn’t seem to be a support group in Sacramento?