I am the mother of three teenage boys who have Tourette Syndrome. They also have the co-morbid conditions of OCD, ADD and anxiety disorder. Prior to being diagnosed with TS, all three of my boys were diagnosed with Asperger’s Syndrome.
It took time for me to embrace that diagnosis when the boys were 4 & 6, but I must admit, I more readily accepted and embraced the Asperger’s diagnosis than I did the Tourette Syndrome diagnosis.
In fact, when Jack was diagnosed, after having had a tic disorder diagnosed a year earlier, I did the safe thing and took a long trip on the River Denial! When I finally diecided to get off the boat and embrace Jack’s Tourette Sydnrome with the same energy that I had their diagnosis of Asperger’s Syndrome, I got ran over by Colin’s diagnosis.
Who would have thought that the horrible sniffing that he had been doing since he was around 6 actually had a cause or a reason. Imagine my shock when we were at a neurologist appointment and I kept telling Colin to stop sniffing and blow his nose and the doctor responded “Really, Mom, you don’t know what is going on here? Really?”
Thank goodness he said it with love and respect … that is when I realized that Colin’s head flipping and sniffing was more than him just trying to make me crazier than I already was.
At the same time, Anthony’s tic disorder was diagnosed. It certainly wasn’t long before I was back at the neurologist pleading for help. We have our nightmares … rage attacks, total OCD, complete meltdowns, debilitating anxiety and bullying … but nothing we have encountered has been quite as hard as the troubles we have had with school.
Oh, I take that back, the only thing quite as bad as school are the “friends” and family members who want to second guess the diagnosis or tell me what I am doing wrong.
In addition to my three boys, I have a daughter who is now 7 years old. Does she have TS? We know that at times she mimics her brothers’ behaviors, but no, I don’t think she has TS. In fact, if she does, for now I am happy cruising back on the River Denial.
As a family, we are also struggling with my health. In 2008, I had my first stroke. They found a congenital heart defect called a PFO, which they closed shortly after. During the medical process, they also found a tumor on my auditory nerve, which for now we are just monitoring. In October 2011, I had a second major stroke.
Every day that I wake up and open my eyes I give thanks to God for giving me the chance to be here and be a champion for my family. During this entire process, my husband opened his own business — a wonderful art and ceramic studio. We are having a great time … though the workload is at times overwhelming.
We are proud to host special events for children with Asperger’s and TS, as well as events for stroke survivors. As my husband says, Autism Speaks, but in our house Tourette Syndrome snfifs, barks, claps, whistles, buzzes and twitches! We love our children and will continue to do the very best for them.
Your courage in coming forwards is remarkable. What your art studio offers is wonderful. Keep on keeping on! Your family has great strength to have arrived at this point in time intact. Of course all the other choices you could have made would not have been so helpful, right? I hope your own health has stabilized so that you and your husband can continue on this lifetime adventure together raising your family. Kudos to all of you!
Great post Patricia! … and I love your husband’s saying. Made me laugh.
God bless you Patricia!! Talk about a full plate!! You certainly are an inspiration. I wish you and your family all the best.
Patricia – Wow, you’ve been through so much. I am supporting you from California! I am proud of you – you give me strength to keep on going!