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.
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.