The following is an excerpt from my upcoming memoir, He’s Not Broken: A Mother’s Journey to Acceptance. My son Jacob was diagnosed with Tourette Syndrome at the age of six, and OCD at the age of eight.
Just when we thought we had seen the worst of Jacob’s urges, a new one emerged that completely changed our passive course of action. We had a wake-up call that brought us to our knees. Our child was sick and we couldn’t help him on our own.
Lately, Jacob had been struggling with a compulsion to put small objects in his mouth, and to touch electrical cords to his tongue. It was as if I had a toddler again. At first he was able to find ways to “trick” the urge by touching the object to his lips.
Although we knew it was something he couldn’t help, we were lost and scared about what could happen, so we reverted to threatening him which only made things worse. With each threat, Jacob’s stress level would rise, which would, in turn, make his tics and urges rise as well.
I walked into his room one night, and was floored by the measures he had taken to protect himself from this thing that controlled him. Sitting on the floor playing with his beloved Legos Jacob looked up at me with his mouth covered in Scotch tape. It took a minute for me to realize why he had done this. I had to walk out of the room so that he couldn’t see me crying.
I went into Warner’s studio where he was working on an illustration of Pablo from the Backyardigans.
“Jacob has his mouth taped shut,” I managed to say.
“What? Why?” he asked.
“So that he can play with his Legos and not worry about putting one in his mouth. He can’t even play like a regular kid, Warner.” I fell apart.