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 here:
- 3rd grade — A boy in my class asked if I had a nervous tic. He was very nice about it, saying, “I’m not making fun of you, we are just curious.” I had no response. What would I say? As far as I knew it was something to never be mentioned. So I just shrugged and said “no” and walked away.
- 6th grade — While apple-picking with my family and some friends, I was having an unusually high tic-ing day. My parents’ friend looked at me and said, “Oh my God. Wow.” I turned and ran.
- 10th grade — I’m taking a math test and just tic-ing away. At the time, I was experiencing some serious complex tics — vocal and motor. So there I am, jabbering to myself, stuttering, calling out numbers and tapping my pencil on my paper, and my teacher looks up and says “Alison — Shut Up.”
Today, I am a stay-at-home mom, and I own a small store. The tics do wax and wane, as you have likely seen in your kids. At their worst, every day is an exhausting struggle — tic, pour the juice, tic, put the cap on, tic, put it in the fridge, tic, tic, tic. The tics just add more and more movement to my everyday routine and are both mentally and physically exhausting.
Just recently, my 2-year-old has started mimicking some of my tics. This is both entertaining and heartbreaking. I hope that he will not develop TS and have to live with an extra challenge in his life. But I know if and when either boy exhibits symptoms, I will try my best to be open and honest with them and to get them any help I can.
Whether it is medicating or special accommodations in school, I want more than anything for them to avoid the stresses that I endured. If I could change anything, it would be to communicate more and hide less. I look forward to hearing others experiences and sharing anything that might be useful.