Parent of child with tics perspective

This post is for a parent coming here because your child has tics. My kid is now a thriving high schooler and I wanted to give my story. I first noticed my kid ticking around age 4. The tics waxed and waned but at times were constant and really concerning. As parents we worried so much. We took him to so many professionals. He tried medications. He tried therapies. We tried elimination diets. We did it all. Very little worked. Most of all we really worried what his future would be like.

The biggest things that seemed to help me/ us were:

- I kept a running note / journal on my phone jotting down what was happening with his tics from time to time. It was helpful just to have somewhere to kind of write it out and get it out of my mind. Looking back now there are clear patterns connected to seasonal allergens, and related to disruption of sleep. The journal also was good to look at when I felt scared bc I could see how the worst stages do eventually pass and life went on

- I made sure to have him around adults (family members / friends) who didn’t comment or react to tics and gave him love and support

- he read stories /books where characters had tics and that was way more effective in normalizing it than anything more direct

- he around age maybe 9-10 he decided he wanted to try to learn how to control his tics. Not something I suggested. So at night we would practice where we would set a timer and play a guessing game or something to mindlessly distract. The first times his goal was to not tic for 3 seconds. We celebrated that and slowly we moved up to 10 seconds, to 30 seconds, etc. all the way to several minutes. He liked learning how to do this so he could employ it if there was a situation where he wanted to suppress his tics for a period. Only if he wanted to.

- we got an official diagnosis and 504 plan which was helpful so his teachers knew eye rolls were not disrespect.

- I worked on my own acceptance and hoped that he would find people who accepted him, and he 100% has.

His tics now are much less and he has a thriving life.