Well hi. I have no idea how to start this post. I am thrilled to be sharing my experiences on this blog and hope that my perspective as a person having lived with TS since childhood and as a parent will help other families.
I have two boys, ages 2 and 4. It is too soon to tell if either of them will have tics, but statistically boys are more likely to have Tourette’s, so I figure with twp boys we have a pretty good chance.
I was formally diagnosed with TS eight years ago at age 23. While the majority of TS patients see their tics all but disappear in adulthood, mine have stuck around. My motor tics over the years have run the gamut from practically nonexistent (just an eyebrow raise) to severe (violent head nodding and arm waving).
I have experienced bouts of coprolalia (uttering objectionable words or phrases), echolalia (repeating others’ words or phrases) and palilalia (repeating one’s own words). When I was 8, I saw some kids with TS on an episode of Oprah and immediately self-diagnosed. (You might wonder what an 8-year-old was doing watching Oprah. To this day I have no idea, but clearly it was meant to be.)
I have no idea if my parents knew about TS (probably), if they suspected I had it (how could they not?), or if they spoke to my pediatrician about it (doubtful). I only know they never discussed it with me. As a result, I never discussed it with anyone else until I reached adulthood and could no longer reasonably function because of my tics.
Because I grew up thinking it was taboo, I still have trouble talking about it. I hope to change that starting today. Since my diagnosis and getting a handle on my symptoms and co-morbid depression and anxiety, I have felt a lot of resentment toward my parents and even more so toward my childhood teachers.
I wish that one of them had spoken up, approached me or my parents, and at least opened up the lines of communication. That is one of the main reasons I decided to get involved in this blog. I am so glad there are parents out there looking for information to help their kids.
When I did once accuse my mother of “never doing anything about it”, she told me I was a happy kid, so involved and successful in school; she didn’t think I really missed out on anything. At first I thought this was ridiculous. Of course I missed out. Maybe I could have been popular instead of nerdy. Maybe I would have been an athlete instead of the manager. Maybe I could have even been homecoming queen!
As if somehow treating my TS would have made me outgoing, coordinated and shiny-haired rather than shy, nearsighted and freakishly tall. Now I realize my life experiences have shaped who I’ve become and have given me strength, compassion and perspective.
Regardless of the positive or negative impact of living for 18 years with an undiagnosed neurological disorder, I did endure some things I would not wish upon anyone. I’ll share a few in my next post.