My name is Cheryl, and I live in the Central Valley of California. I am the mother of one son with severe Tourette Syndrome and another with moderate to severe OCD. They are both now in their late 20s but were diagnosed in fourth and sixth grades, respectively.
My husband and I and our sons have survived the journey with many bumps and bruises along the way…but we did survive and even thrive, even though it wasn’t the journey we expected.
All in all, I believe we raised both of our sons to talk intelligently about their conditions to others (especially authority figures who were always questioning them), have compassion for others with differences (both will take the side of an ‘underdog’ in a heartbeat), and know that home is always a safe place for their tics and routines (despite about a year of all of us wearing ear plugs because of a screaming tic phase. :)
Our youngest with TS still lives with us, but he is working part-time and has a girlfriend. I must say that during junior high and high school, we never thought things would improve for him! There are still struggles with several long-time tics (including screaming and coprolalia) and he has what I call “add-ons,” such as mood fluctuation, irritability and depression. But he is doing remarkably well for the places he’s been!
Our oldest with OCD has excelled after high school. He’s made senior stockbroker in a national company you would recognize — a job he is uniquely suited for! — and is managing his condition moderately well. He is married and has one son who is now 3 years old.
Our boys came by all of this directly from the family gene pool, as my husband has several motor & vocal tics along with ADD and I have mild-to-moderate OCD. Extended family on both sides have obvious (but mostly undiagnosed) TS, OCD, ADD and Autism. And yet, at the time, we were blindsided by the odd behaviors displayed by our children in elementary school. We had absolutely no idea what was going on.
Fortunately, now we know what it looks and sounds like now. Our grandson is displaying transient tics and obvious repetitive routines already at age 3. Mom and dad are very concerned: Dad watched his brother struggle with severe tics his whole life, and Mom — bless her heart — is very worried about what people will think.
We lived through that early phase, too, and I hope we’ve set a a good example by accepting our neurologically challenged family despite stares and comments by others. Should things progress into full TS and/or OCD for him, I’m happy that he will always have a role model for living with it. He adores his uncle and understands that noises and movements are just part of our family. And, of course, he will always have a safe haven at home and at Nana’s house!
If I can be a source of information or encouragement for other TS parents, I’d love to be of help! When our boys were first diagnosed, we got such bad information from local doctors… even neurologists!
It was only through the help of an online neurology board with many participating parents, that we confirmed the “real problem” and our need for second and third medical opinions. I will always be grateful for resources like TSParentsOnline!