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Tourette Syndrome Awareness Month: One for the ticcer

This post is for my son, Jacob, who happens to have Tourette Syndrome, and he happens to be one of my greatest teachers. May 15-June 15 is National Tourette Syndrome Awareness Month. Pass this blog along to one person and help us create a chain of awareness and compassion.

Things happen for a reason. Even the “bad” things. We just have to be willing to search for meaning in the chaos. It’s there.

When Jacob began to show signs of being “different,” I panicked. None of the books that were on my shelves told me what to do. The books were meant for the mainstream mom, the mom whose kid tended, more often than not, to follow the “rules” of what it means to be an infant, toddler, preschooler, etc.

Jacob was never that kid. Ever. Some of the unexpected was easier to embrace then others. He walked before he was 1 year old. He was reading by age 3 1/2. But by age 5 some of the things I wrote off as eccentricities that I was certain only accompanied genius, started to take a turn more toward the bizarre.

Loud sounds would cause meltdowns. Strong smells would cause meltdowns. Sudden (or even not so sudden) changes in plans would, you guessed it, cause meltdowns. And all of these were quick to happen and not so quick to dissipate.

Beyond that he began to exhibit some strange, ritualistic behaviors that really scared me. They scared me because they weren’t as easily explained away as the tantrums. Tantrums could be written off as he’s just had a long day or he must be coming down with something.

But how do you explain it when your child starts punching himself in the stomach repeatedly? There’s nothing in the books about that. And trying to figure out why your child sticks his finger down his throat hundreds of times a day is not as easy as thumbing through the index in the back of some book.

What I needed was a book called What to Expect When Everything You Expected Isn’t What You Got. Sadly, no such book exists.

Fortunately, what did exist for me was a strong sense of who Jacob was aside from the oddities that defined him for others. Even after the diagnosis of Tourette Syndrome and OCD, I knew that those labels were only parts of the whole and that the whole was the only thing that mattered.

I’d love to tell you that I knew that from the get-go. But I spent much of the first five years of Jacob’s diagnosis living as the mother of a child with Tourette’s instead of simply living as Jacob’s mother.

And through it all, Jacob never once stopped being amazing. More often than not, it was Jacob who comforted me on the days when his tics were high.

The same kid who caused me such worry and pain, has taught me that life has so much more to offer us if we learn not to dwell on the bad stuff and stop letting it define our present and our future. When I stopped seeing Jacob as the son with TS, I was finally able to see him as the blessing that he is.

Jacob taught me that the meaning in the chaos for me, was finally having a greater purpose in life. He helped me evolve into a kinder, more compassionate person than I ever was.

Without Jacob I never would have had a story to share. I hope and pray that my book, He’s Not Broken, will help other parents embrace the child they have been given and live in the moment, no matter how difficult it might be, knowing that, although he may not be the child they wanted, with an open heart and mind, they will soon realize he is just the child they needed.

0 Comments

    • Michelle, you are the bomb already! We could post some of those older TS stories if you’d like. Then you can write new ones as you see fit. Does that sound good?

      • Wow, well thanks Jeff. I’ll pick a couple of posts from The Tic Dock and put them up here in between any new ones that I come up with. And I will work on the one about the petition as well.

  1. Excellently written! Your story is pretty much our story too. We are blessed to have a son with Tourette Syndrome, OCD, ODD, SPD and more, and he is the sweetest little guy! I guess God thought we were up to the challenge.

    • Hi Sara,
      I thought for so long that I wasn’t up to the challenge at all. Jacob proved me wrong. I’m such a better person because of him. Thanks for reading and taking the time to comment.

      Light and love,
      MIchelle

  2. Thank you so much for sharing your heart warming story. My nephew Matthew is 11 yrs old and was diagnosed around age 5. It has been such a difficult road for those of us who love him, but even more so for him. He feels so alone and hasn’t met another living soul that has TS. I am heart broken for him. He is the bravest person I know because he deals w/ it everyday. Some good days and most seem unbearable. He is incredibly smart too. I wish Jacob the best and I hope a cure is found someday and that I live to witness it.

    • Barbara,
      We went through the same thing with Jacob for a long time before he finally went to a TS camp and met some other kids with TS. It’s hard being different alone. Please tell Matthew that Jacob would be happy to talk with him any time – via FB, email or phone – just let me know and I can pass along the info. Jake is really great at talking to other kids who have TS. He’s got a huge heart and comes from a true place of understanding.

      Thanks so much for reading and taking the time to comment.

      Light and love to you and Matthew.
      Hang in there,
      Michelle

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