When you find out you’re pregnant, you are the best parent you will ever be. Everything you do will be perfect, your child will be well behaved with good manners, an excellent student, an athlete, president of the student council, or join every club you did.
The first time I felt Jacob kick I knew that was my little soccer star. As I planned out his childhood while pregnant, he continued kicking and pushing on me. The first time the doctor put him on my chest, I felt fear like I have never known. How do I keep this baby alive, much less turn him into the soccer star I imagined?!
Today, I got mad at Jacob for repeatedly telling me the same story I told him last week. He always repeats my stories back to me several days or weeks later. I used to think he was searching for validation or something like that. Now I know he just can’t help but do it, no matter how many times I tell him to stop.
I have to remember to breathe, tell him it’s OK, but no, it’s really not a good time to rehash my latest story. I close my eyes and remember the first time I saw him in the delivery room, how perfect he was, and how everything changed for me. Little did I know that he would eventually change me in ways I could never have imagined.
His first year was a blur. He was so busy, always moving, laughing, kicking, wiggling, and entertaining us with his silly ways. He was adorable and sweet but BUSY. He has never been still. He eats well and always has. He was spirited as a toddler. We did the terrible two’s for two years with him. When he was almost 3, we had our second son.
Jacob was loving with him after getting over a bit of jealousy. But it took another year for his behavior to improve. He wouldn’t sit still for story time and hated being read to. He wanted to be up and playing. He wouldn’t stop to color. He slept pretty well but that wasn’t surprising because he was always going when he was awake.
Around the age of 4, I started noticing things — little oddities here and there that I couldn’t put together. There was just something different about him that I couldn’t put my finger on.
He was always in trouble at daycare and despised nap time. Once his brother was a toddler, there was no denying that something was different about Jacob. He had always been different from other kids but seeing our other son act the way he did only highlighted how different Jacob really was.
Kindergarten was rough. His teacher described him as impulsive, out of control, and defiant. She stated in October that he was in danger of being retained in kindergarten if his behavior problems continued. He was hitting, kicking, biting, spitting, not listening, talking excessively, and refusing to do what he was told. They started learning sight words in January. That changed him.
He loved reading and turned himself around, eventually winning the reading award for his class. First and second grade would continue to bring improvements but something was off. During an evaluation in kindergarten the psychologist suggested that he was ADHD and on the autism spectrum. Those diagnoses didn’t fit. We moved out of state and gave up on getting answers.
One day a commercial came on for a new TS medication that promised to control tics and associated problems. I distinctly remember a little girl on the commercial saying that she just couldn’t stop talking until she took whatever the medicine was. I filed that away for later.
Jacob played baseball for a few years. When he moved up to machine pitch, he had a pattern of actions that included scratching his nose, chin, and pulling his shirt off both shoulders before he was ready to take a pitch. It happened on almost every pitch. The coach asked what it was and I said it was just nerves. I filed that away with the excessive talking.
We went on a trip to Disney World in early 2012. He was uncontrollably excited and developed a bizarre ritual of putting his fingers in his mouth in the same order, biting his thumbs, and adjusted the tongues on his shoes. That was when I knew he had TS.
He had vocal tics for a while, including sniffing even when his allergies were controlled, the excessive talking that was only getting worse, and now this motor tic on top of the baseball tic that was still present. When we got back from Disney, I started the process for diagnosing his TS.
As much as I knew he had TS, I didn’t try to work through it right away after he was diagnosed. It was more shocking that he was having absence seizures. I just figured TS was the tics. I began researching and was consumed with guilt. Everything I thought was intentional bad behavior was probably because of the TS.
I cried myself to sleep for weeks because I thought I had broken him by being so strict when he couldn’t help the things he was doing. I read everything I could find about TS and spent hours replaying his behaviors in my head.
Fourth grade was terrible. His teachers made no effort to educate themselves on him and what they could do to help him. They consistently made him feel bad about himself and did nothing to protect him from the bullies in his class. He gave up telling on them because nothing ever happened to them. The teachers were quick to send him to the office for minor infractions but never did they do anything to the kids picking on him.
This past summer Jacob went to Camp Twitch and Shout for the first time. It changed his life. He now has confidence in who he is, he’s comfortable in his own skin (tics and all), and he’s made some great friends. He knows he’s not the only one and he’s not a bad kid. Even though his tics are worsening right now, he doesn’t care.
We just want him to be happy. He’s looking forward to camp next summer already. Camp changed our whole family as well because we see the impact on him and have found support groups on Facebook where we can ask the questions that had no answers last year. We have become more open about his TS and found that two coworkers have older children with TS.