My oldest daughter was diagnosed with Tourette Syndrome two years ago at the age of eight. Her first tic, sniffing, began when she was six but at the time we had no idea it was a tic. We assumed she had a cold or allergies. Her constant sniffing was annoying at times so we were constantly getting after her to blow her nose or insisting she try to not do it so often. I feel bad about that now. We had no idea that she couldn’t help it. Then the tic just stopped one day and was forgotten. Several months later the eye blinking tic showed up. She was on a swim team at the time so I assumed the chlorine was bothering her eyes except her eyes weren’t red and she didn’t have any discomfort. In fact she was unaware that she was blinking excessively. I began to wonder if the blinking was a tic so I did what most parents of the 21st century do when they have medical concerns and googled childhood tics. I read that up to 18% of school age children have tics and having tics doesn’t necessarily lead to a Tourette Syndrome diagnosis. It was certainly in the back of my mind but I kept thinking, Not my child as if I could ward off bad Tourette spirits with my thoughts. Then the blinking tic vanished and I put it out of my mind altogether. I convinced myself that her tics were due to stress since our family was going through a crisis at the time.
Shortly after that Madeline started second grade and was struggling. Her teacher was rigid and had a low tolerance for her hyperactivity and impulsivity. She was having trouble grasping math concepts and getting her to do homework was a nightmare. Most homework nights ended with either a tantrum or me yelling. It was so frustrating. Many nights I cried myself to sleep not only because I felt bad about losing my temper but also because she was so disruptive to our home. She monopolized so much of my time and I felt resentful that she was taking that time away from my other children.
During this time of great stress was when an explosion of tics returned. We were watching a movie together in my bed when I noticed that she was repeatedly scrunching up her face. It took me by surprise and I asked if she was okay. She was embarrassed that I had noticed and explained that she has to do it to feel okay. Of course I told her it was okay and that I love her no matter what but inside I was screaming. This was not supposed to happen. I had prayed for the tics to stay away. I was so overwhelmed with a fourth pregnancy and dealing with Madeline’s intensity that I felt like I couldn’t take on anything more.
Later that night I hid behind the bedroom door where Madeline could not see me and watched my beautiful daughter repeatedly scrunch up her face and roll her eyes. And I cried. She’s a little girl. Life shouldn’t be this hard and all I could think about was how these tics were going to doom her to a life of ridicule.
Not my child.
The tics weren’t the only thing roaring its ugly head. Obsessive Compulsive Disorder and anxiety issues also made an entrance into Madeline’s world. She was so fearful of everything from going to bed at night to riding elevators. Disney characters, clowns, and Chuck E Cheese sent her running as if she was being chased by a masked man with a chainsaw. She sniffed everything and had a ritual of touching her forehead, cheeks, chin, chest, and nose with her food before she could eat it. She did this with every bite and it was very noticeable. Her siblings, friends, and some adults would question her about it. She would just reply that she didn’t know why she does it but that she has to do it or she feels icky.
Not my child.
She was never tic free over the next few months but her tics would change. With every tic that disappeared I held my breath in anticipation for the next one. I was so fearful that the next tic would cause her to recite curse words or harm herself. Thankfully cursing has not happened but she has had some tics that cause her harm and others that are socially unacceptable. She had a motor tic of jumping and kicking her bottom with her heels. I didn’t realize how hard she was kicking herself until I saw the circle bruises from her heels on her bottom. A lot of her tics involve sniffing or rubbing objects on her nose. We wouldn’t let her drink anything from a can out of fear that she would cut her nose since she had to rub her nose on the opening prior to every sip. The tic I had the most trouble with was when she would cough up whatever was in her throat and spit it out. I avoided taking her anywhere until that tic disappeared. Thankfully it was a short lived one.
That winter Madeline had four strep throat infections within five months. Although excessive, it was not unusual for Madeline to have frequent bouts of strep. According to Dr. Google there is a theory that tics can be triggered by strep throat infections. This gave me hope that maybe her tics were triggered by bacteria and not inherited from me. I come from a long line of mental illness and prior to meeting my husband I swore off having children because I feared I would pass on a neurobiological condition. There I was with four children and my firstborn exhibiting signs of my worst fear. I was not coping well.
Not my child.
Antibiotics for the strep throat infections didn’t seem to have any effect on her tics but we did notice a marked improvement after her tonsillectomy. Or we just got used to her tics. Maybe we saw what we wanted to see.
Our pediatrician was hesitant to diagnose Tourettes or ADHD so he referred us to a pediatric neurologist who gave us our official diagnosis. Turns out it wasn’t the crushing blow that I expected. We had been living with these conditions for several years and it had been okay. Sure, some days are really difficult but Madeline’s quirkiness is part of who she is. It really isn’t that hard to look past her tics and see the sweet, loving little girl she is.
Yes, my child.
