This is Part One in a series of posts about Tourette Syndrome.
Because people know that some of my kids have Tourette Syndrome, I get a lot of email and Facebook messages that start something like this – My son has started doing this weird thing with his head. Or In the past few weeks, my son has been making this noise with his throat and blinking his eyes a lot. Or This girl in my class sometimes nods her head in a strange way and flaps her arms at odd times.
The messages generally end the same way, asking how I knew my children had Tourette’s, what the first signs were, how the diagnosis was made. I think most people are looking for some reassurance – either that their children’s symptoms and behaviors don’t match up (Whew, it’s not THAT!) or that they do match up and answers may finally (Finally!!) be on the horizon.
Since I’m asked these questions so often, I thought a blog post (or two or three) may be helpful. I am not a healthcare professional. I’m just a mom who has lived with some ticcing kids day in and day out for more than 9 years. The things I write are not meant to be taken as medical advice or as some sweeping commentary about Tourette Syndrome in general. I’m just telling you our stories with the hopes that our stories can encourage or educate someone else.
When Rachel was three, she started stuttering. At first it was mild, coming and going depending on how tired she was. Then it went away altogether. But after she turned four, the stuttering started up again. Soon, it was very severe. Trying to get out a word became a full-body experience. She would bend at the waist, slap her thigh, stomp her foot, bob her head. Still, she would often have a total block, unable to make a sound come out of her little mouth. Though I did not associate the behaviors, she had also started twirling in circles when she was excited or nervous.
The summer before she turned five and we would begin doing kindergarten work in homeschool, I met with the man at the local school board office who oversaw homeschoolers in our town. He helped me create a 504-plan that would enroll Rachel in speech therapy once a week at the nearby public elementary school. We hoped the speech and language pathologist would help Rachel overcome the debilitating stuttering that often left her in tears. Much like me, Rachel is a communicator (A fancy way of saying we both talk A LOT!), and stuttering was especially frustrating for someone with so much to say!
The speech therapist was just about the nicest lady in the world! We LOVED her! She taught Rachel this strategy of turtle-talking — slowing down, drawing out her words, taking her time and relaxing. It was like magic. We even had a hand signal the teacher and I could use to silently remind Rachel to turtle-talk. Around the time the school year began and speech therapy started, Rachel showed some allergy symptoms — blinking, sniffing, and this cute this little throat-clearing noise. After seeing the doctor, we started her on Zyrtec. I figured the speech therapist and Zyrtec would have my little girl back to “normal” in no time. Little did I know, the definition of “normal” would forever be changed for us.
After a month on Zyrtec, the allergies were not improving and the cute little throat-clearing noise was sounding more like a wheeze. One Wednesday evening, the AWANA leaders at church were worried Rachel was about to have an asthma attack during game-time, so they made her sit on the sidelines. The wheeze was that noticeable! Finally, one day the speech therapist met me at the door to ask if Rachel had allergies. I explained that she had been on Zyrtec for a month, but the symptoms were worse, not better. The speech therapist encouraged me to call Rachel’s doctor right away and explain every symptom we’d been noticing. “I don’t think it’s allergies. Tell him EVERY symptom,” she encouraged.
As an education minor in college, I had taken a class on The Exceptional Child. Plus, I knew how to Google. I already suspected Tourette Syndrome; and I knew in my gut that the speech-language pathologist was also suspecting TS, though she couldn’t really come right out and say so. That evening, without mentioning Tourette Syndrome, I told my church ladies’ group about Rachel’s stuttering and allergy-symptoms and the speech therapist’s suggestion to call our doctor, asking them to pray. Immediately, a seasoned teacher in the group spoke up, That sounds like it could be Tourette Syndrome. You should call your doctor.
I knew. I can’t explain it any other way. I just knew. That night, I made a list of all the things I’d noticed in recent months — extreme sensitivity to textures, scratching and picking at skin, blinking, sniffing, nose scrunching, throat clearing, wheezing, twirling, stuttering, head bobbing, body bending, foot stomping, an overwhelming impulse to bop her brothers on the head, the day she impulsively bit me on the shoulder and seemed shocked at what she’d done. As I finished my list, I included Rachel’s latest complaint as we drove through town in our big, black Surburban, “Please turn off the music, Momma! When I hear the music, I have to blink the beat and my eyes are tired.”
Looking at the list, I was shocked. I hadn’t put it all together in one concise train of thought until that moment. Of course this was more than just a stuttering phase or seasonal allergies!
The next day I spoke with our family doctor on the phone. He did not even want us to come into his office. “This is definitely outside the realm of my speciality. I will refer you to the pediatric neurologist and set up an appointment.”
And so began our education of Tourette Syndrome. By the time we saw the neurologist, the list of quirky behaviors had grown in length. He explained that to receive an official diagnosis of Tourette’s, a person must demonstrate some vocal tics AND motor tics for at least a solid year. These don’t have to be the exact same tics for a year, but some sort of vocal and motor tics must be present for a year. So after a sleep-deprived EEG ruled out seizures and an MRI ruled out any sort of brain tumor, Rachel’s initial diagnosis was Unspecified Tic Disorder. We would have to wait several months for the magic one-year mark in order to get the diagnosis of Tourette Syndrome.
We quickly learned what sorts of things tend to make tics worse — exhaustion, sickness, anxiety, bringing attention to the tics. We learned that impulsivity can go hand-in-hand with TS, so Rachel carried a stuffed animal or doll around for when she had that overwhelming urge to bop or poke something. This kept her little brother’s heads and tummies safe from random bops and pokes.
We learned that little hands cannot create papers of perfect penmanship while the body is ticcing; and that, this truth combined with OCD tendencies, meant handwriting and schoolwork could quickly become sources of major emotional meltdowns. So I learned to strategize for that in our homeschool days.
I searched for socks without seams or figured out ways to forego socks altogether. I learned that letting Rachel wear fancy white gloves to church prevented her from picking her white tights to shreds on the short drive to and from church. We learned that falling asleep could be especially difficult as one tic after another would startle Rachel from near-sleep, only to start the entire falling asleep process over again each time. So we became MUCH more patient at bedtime. Or at least, on our good days, we did.
And I quickly realized that, though Rachel’s tics sure could annoy the ever-living daylights out of me, I could walk away, step onto the porch, close my bedroom door, lock myself in the bathroom, whatever — but she could never, ever get away from the tics. So during the most frustrating moments of hearing her whisper the word perfect over and over again or snapping her fingers or grunting non-stop, I would remind myself that it was far more frustrating for her. I still sometimes have to remind myself of that now, 9 years later, when she is singing for hours on-end or making some other noise with her throat or mouth.
We chose early on to be up-front and straightforward with people about Tourette Syndrome. I figured if I made it out to be some secret, Rachel would infer TS is something to be ashamed of. It’s not. Tourette’s is simply a fact of life for our family, just as my husband’s Type 1 Diabetes is also a simple fact of life. Her brain releases dopamine irregularly; Dad’s pancreas doesn’t release insulin at all. Sometimes some people’s bodies just function a little abnormally, so we deal with it. We accommodate when and how we need to; we educate ourselves and others as best we can; and we go on with life, choosing to view Tourette’s (like Diabetes) as one aspect of life, not as the defining, final say.
Coming up in Part 2: In her own words, Rachel describes what it’s like to have Tourette Syndrome.