Tag Archives: Tourette Syndrome

Tic Tic — Tourette Syndrome, Part 5

This is Part 5 in a series about Tourette Syndrome. If you haven’t read the prior four posts, you can catch up on them HERE

sleeping

(Road Trips with tics can be especially challenging. A sweet, quiet moment of rest on a Road Trip in 2011)

As I began writing this series about Tourette Syndrome and my family’s experiences with this neurological condition, I was very intentional about consulting my children and enlisting their help. I especially wanted you to hear directly from them. To tell you the truth, I had a couple motives for this. First, I think it’s important for you to read the first-person account of what it’s like to live with Tourette’s in order to better understand what TS is all about. So your education and information was one of my motives. But just as importantly, I asked Rachel and Silas to participate in this conversation because it is important for them to practice articulating what Tourette Syndrome is, because they are learning to be their own advocates.

From the very beginning when Rachel was diagnosed at age five, Patrick and I clearly explained Tourette Syndrome to her. She knew something was going on with her body. She is the one who had tearfully told me she had to blink the beat to music. She knew she was twirling around in circles when she was excited or nervous, not because she wanted to, but because she felt compelled to. She knew she was sitting in a neurologist’s office for a reason. I had typed up a list of all the quirky behaviors so he could read them rather than detailing this laundry list of weird behaviors right in front of Rachel, but she still knew something was up. And because Rachel had to endure an EEG and an MRI and I know that sometimes children’s imaginations can be far worse than reality, we wanted to reassure her with the facts. We were eager to explain Tourette Syndrome to her, and she seemed relieved to know that all of her spinning and stuttering and blinking and sniffing had a name, that she wasn’t the only person ever to do this.

Right away, we equipped Rachel with facts. Believing that prejudice or teasing or bullying stems from ignorance, we aimed to arm her with information in a way she could easily articulate to others. Within weeks of being diagnosed, Rachel was asked by one adult if she needed a tissue, if she had a cold. “No,” five-year-old Rachel replied, “I have Tourette Syndrome and sniffing is one of my tics. I can’t really control it.” 

On another occasion, I heard her explaining to someone, “You know how when you need to sneeze, you just sneeze. You can’t really help it. That’s what tics are like. My body just moves on its own. I can’t really stop it.” 

When she was in first grade, a classmate was annoyed with this little grunty noise Rachel made. The little girl insisted Rachel had to stop. But Rachel just shrugged and said, “I can’t help it. I’m sorry it annoys you, but I can’t stop. It’s a tic.” Her extremely understanding and Tourette’s-educated teacher quickly stepped in to explain the concept of tics to Rachel’s classmates.

On her first or second day in public middle school, Rachel encountered teasing or bullying for the first time. A classmate Rachel had never met came up to her, pointed to a group of students and said, “You make weird noises and faces. We’re all over there making fun of you.” Then she proceeded to re-enact their mocking of Rachel’s tics. Rachel thought it was incredibly stupid both to make fun of a stranger and to straight up tell the stranger you’re making fun of her. Because she’s a lot like me, Rachel’s facial expression probably revealed these feelings. As she has done since she was five, Rachel looked at this would-be bully and said matter-of-factly, “I have Tourette Syndrome. These are my tics. I can’t help it.” And she walked away.

Those kids never made fun of Rachel again. That would-be bully was in her art class and actually went out of her way a week or so later to stop by Rachel’s table to tell her, “Hey, you’re a good artist. I think you’re the second-best artist in the class.” As she recounted this at home after school, Rachel laughed about the “second-best” compliment and chose to view the odd comment as a sort of apology from the girl.

This past school year, Silas feared his tics were disturbing his classmates, so he was holding them in. As I explained, if he holds in tics, he can only think about not ticcing. So Silas was not getting much work accomplished at school. I offered to go to the school and help Silas explain Tourette’s to his classmates so he could stop worrying about ticcing at school. To be honest, part of my motive was purely selfish — I did not want to spend hours each evening helping him with work he should have completed at school.

Rachel asked if I would check her out of school early so she could come along. Silas was very excited to have his big sister come with us to talk to his class. That afternoon, the three of us explained Tourette Syndrome to both Silas’ class and the neighboring buddy classroom. Silas and Rachel handled the Question and Answer segment like professionals!

When I met with Silas’ teacher to discuss accommodations (like chunking tests, allowing him to walk to the restroom or water fountain to release tics, permitting him to keep a stress ball in his desk, etc.), Silas came along and participated in the conversation. I encouraged him to tell his teacher what would help him and what would not. You see, my job as a mother is to work myself out of a job, so I am teaching him to be his own advocate, to understand his needs and express them clearly.

At the same time, we have been straightforward with Rachel and Silas from the very beginning that Tourette Syndrome is never an excuse. I told them each right away, “I will be your greatest ally, your best supporter, your advocate. I will go to bat for you. So you must be honest with me. Never say something is a tic if it isn’t because I can’t help you if you aren’t honest with me.” And they certainly aren’t perfect and I’m sure there are times they have not been completely honest with me about some things, but I believe they are honest with me about this one thing because they know how important it is. So when they are making annoying noises in the van and I say, “Is that a tic?” they tell me the truth. And if they say yesthen I suck it up and endure. And if they say no, then I tell them to knock it off because they’re driving me batty.

During especially hard times in school, I have told Silas that he will just have to work harder than his classmates to pay attention and focus and get work done. That’s just the way life is. We do not view school accommodations as a way to make things easier or to get him out of work. We view accommodations as strategies to help him be successful in school. My job is to help him figure out those strategies to equip him to succeed, and his job is to work hard and not let Tourette’s be an excuse for failure. So far, we’re both holding up our end of the bargain.

When Rachel was first diagnosed with Tourette’s, I grieved and sobbed. My greatest fears were that she would be different, that she would be made fun of. We have learned that confidence and straightforward information most often dissuade teasing or mocking. As for being different — Tourette’s has made Rachel and Silas different. They have learned a strength of character and self-confidence and self-awareness that they may not otherwise have known. They are both empathetic toward others with differences. Tourette’s has made our entire family different in some ways. The clicking and grunting and singing and howling and repeating, the snapping and tapping and stomping are teaching us all patience and tolerance and grace.

Not everyone has tics annoying her or distracting him, but everyone has something to overcome. Everyone has something he must work harder for. Everyone has something she needs the patience and understanding and grace from others for. Tourette’s is just our family’s daily reminder to give that patience and understanding and grace to ourselves and others.

Tic Tic — Tourette Syndrome, Part 4

This is Part 4 in a series of posts about Tourette Syndrome. If you want to catch up, you can read Part One, Part Two, and Part Three.  

My son Silas is ten years old. He has been ticcing since he was four. This is what he has to say about Tourette Syndrome, as dictated to me.

soccersiTics are kind of an annoying thing to have. Especially when you get in trouble at school for making weird noises or stomping your feet too loudly.

When I don’t take my medicine, it feels like I can’t control my body. I get mad easily, and I don’t have a lot of self-control. My body feels energetic or hyper, constantly moving. I feel like I wouldn’t be able to really be around people because I feel like I’m going crazy. My body moves without me controlling it.

I can’t really remember a time before tics.

Sometimes when something isn’t that big a deal to other people, Tourette’s makes me feel like it is a big deal to me. Like if my brother accidentally bumps into me or accidentally kills me on a video game, then it is a big deal to me and I feel almost out of control of my anger. My medicine helps me have more self-control.

Some of my tics are clicking with my mouth, stomping my feet, shaking my head, flapping my arms, drumming with my fingers, bending my knees. If I’m walking and one foot goes left a little bit, then I have to go left with the other foot and then go straight.

At school, tics sometimes distract me. I might put the wrong answer down. Or I get stressed out about how long a test is and I just kind of freeze up. I need my teacher to break up a big long test into small parts.

Before, I’ve had to check math work over and over and see if it’s the right answer. I would be afraid I didn’t do it right, so I’d check it again and again and again. Or sometimes if I’m pressured and have only a certain amount of time, it stalls me up and I can’t do as good a job as if I have as much time as I think I need.

Sometimes I try to hold in noises I have to make or tapping my feet or something, because I don’t want to disrupt my classmates. That distracts me from doing my work.

Tourette Syndrome is a very difficult thing to have. It distracts you from doing things you’re focusing on. Sometimes when you lose self-control, you regret what you do or how you act. I need patience and encouragement from other people so I can do the things I need to do. I need teachers to chunk my tests or help me stay focused so I can do my work.

Nobody has ever made fun of me or tried to act weird to make me feel bad. Only once or twice in school someone said, “Can you stop?” so I tried to stop ticcing.

Tourette’s isn’t all I’m about. I have other abilities. I don’t have to keep thinking about Tourette’s all the time. I’m a normal kid. I do what everybody else does. I play sports during recess just like everyone else. I play video games. I play soccer. I’m going to be on a traveling soccer team in the fall. So Tourette’s doesn’t get in the way of things I do in life.

homeworkSilas

Tomorrow, in the final post, Part 5, I will share how I’m equipping Rachel and Silas to be successful in school, advocate for themselves and educate others about Tourette’s. 

Tic Tic — Tourette Syndrome, Part 3

This is Part 3 in a series about Tourette Syndrome. You can read Parts 1 & 2, here and here

Though the genetics of Tourette Syndrome is not completely understood, medical professionals do agree that Tourette’s does have both genetic and environmental components. Often, Tourette Syndrome runs in families. We fall into that majority, with more than one ticcing family member.

When Rachel was seven and her little brother Silas was four, our family was preparing to join a missions organization as support staff missionaries. One Sunday morning, Patrick and I were speaking in a small church in West Virginia. As I stood before the congregation talking about tribal missions in remote places, I looked back and saw little Silas stretching his face and rolling his eyes. I assume my mouth kept talking about missions, but my brain and heart were thinking, “Oh, no!  Here we go again!”

SillySilasinhat

(Silas chose this photo for me to put with this post. He’s a nut!)

At first, we weren’t sure whether Silas was merely imitating his big sister or whether he was truly ticcing on his own. When he began ticcing in ways Rachel wasn’t ticcing, I figured he would eventually be diagnosed with Tourette’s as well. In addition to the facial stretching, Silas also began making this really cool noise with his mouth. It was sort of a clicking noise, but it wasn’t the usual tongue on the roof of the mouth clicking, this noise was different. None of the rest of us could make this particular noise. But Silas made it all the time. Seriously. All.The.Time!

For a few months, Silas’ tics came and went, fading in and out — lasting a day or two or maybe a week, then disappearing for a while before returning. Half-way through his kindergarten year, we moved to Florida to serve with the missions organization and enrolled Silas in a small, private school. The stress of leaving the only house and town and church he had ever known, living in an apartment, starting school in a classroom setting for the first time — you know, having his entire life go topsy-turvey — brought on the tics with full force.

Living in an apartment and trying to balance respecting our neighbors with allowing my children to be at home in our house was extremely stressful to me. I was constantly reminding them that people lived under us and across from us, that people could hear them screaming or stomping or wrestling. It was absolutely the worst time for Silas to develop a very loud screeching tic. But that is exactly what happened. And the more I tried to shush the children, the more he would screech.

Kindergarten was only half a day, letting out at noon each day. I would walk to the school and as I approached the classroom door to get him, he would run out, screeching loudly, shaking his head from side to side. Bless his heart, he would hold his tics in all morning; then when I showed up, they would all come out at once! Most every day, he would tic and tic and have a huge meltdown as soon as we got home. I would carry him to his bed and hold him and pray with him until his rigid body relaxed. Then he would take a nap. Many days, he didn’t even eat lunch until mid-afternoon. Being in the classroom for half a day wore him out.

Often, but not always, Tourette Syndrome is accompanied by some other neurological issues, like ADHD, poor impulse control, OCD, etc. Though Rachel has some OCD tendencies and occasional impulsivity, the co-morbid issues seem far more noticeable with Silas. Once he progressed to full days of school, we really began to notice the impact of Tourette Syndrome. He struggled in the classroom. If he held in his tics, he thought only of not ticcing. That meant he couldn’t think of math problems or comprehend anything he read because his entire brain was focused on not ticcing. If he let himself just tic, then he got in trouble for tapping a ruler on his desk or tapping his feet on the floor or making noises.

His teachers, most of whom were old-school classroom teachers and firm disciplinarians, did not understand Tourette’s and struggled to believe that he really wasn’t just being a naughty, squirmy boy. He regularly felt like he was in a no-win situation at school, so he began to shut down and give up. In math class, if he tapped his foot or bopped his pencil on his desk, his teacher gave him dirty looks or shushed him. But if he held in tics, he couldn’t get his math assignment completed. His teacher would see him sitting at his desk doing no work, assume he was defiantly refusing to attempt his assignment, and send him to the office to work beside the principal. His regular classroom teacher expected neat handwriting on every assignment – a ridiculous expectation for a child with tics. A child cannot write neatly while shaking his head, blinking his eyes, stretching his fingers and bringing his knees up to touch the underside of his desk – all as quietly as he can so as not to disrupt his classmates.

School was torturous for Silas. My attempts to advocate for him were often viewed as causing trouble or stirring up dissension or complaining. It soon became clear that we needed an official, formal diagnosis in order to press for Silas’ educational needs to be met. An excellent pediatric neurologist quickly gave us the diagnosis we needed and recommended a medication he thought would be helpful to Silas with minimal side effects. At first, we resisted the medicine.

When Rachel was first diagnosed, we had tried a medicine for her, but the side effects were much, much worse than any of her tics. So we stopped medicine and decided the tics were a mild annoyance, not worth any of the side effects. We planned to follow that same tactic with Silas. However, it became apparent that tics are not the same in every person and a one-size-fits-all strategy would not be the wisest approach.

As Silas continued to struggle in school, accomplishing virtually NO work at school, spending up to or in excess of three hours doing homework each evening, we knew we had to change the course. He began taking Intuniv, the extended release form of guanfacine, a medication that has been shown to help with ADHD and reduce tics. His first week on the medication, Silas was a walking zombie. His eyes were stuck at half-open, half-shut that entire week. He fell asleep at school. His entire personality was dulled. It was tempting to quit the medicine. But we knew we had to allow time for him to adjust. After those first few days, we saw great improvement. We first noticed a difference on the basketball court. Whereas before, he would rapidly run around the court waving his arms wildly, sort of spazz-like, the week after he started Intuniv, Silas was focused and more calm and controlled on the court. He scored several baskets; he stole the ball from opponents; he dribbled with greater control. We also began to see improvement at school. Though he still struggled to work independently and stay on-task, he ticced less and did not fall as far behind in his work. Even with the medication, the teaching strategies and classroom structure at the small school were not ideal for Silas and his needs. That much was clear.

Through a long series of events, I homeschooled for one semester before our family moved to Virginia and we enrolled the children in public school. Silas adjusted very well to homeschooling, much better than I had expected. He excelled with one-on-one instruction and paced himself through his work each day. We gave him noise-cancelling headphones, and I created a private workspace for him with a trifold display board. He could tic as much as he wanted because he was in the safety of his own home, among family. To my surprise, he also adjusted extremely well to the public school classroom. His first public school teacher was a perfect fit for him. She would be the first to say that she has a bit of OCD, and her highly-structured and organized classroom was exactly what he needed. For the first time, Silas was enjoying school!

Fourth grade brought some growing pains, and we had to learn some new strategies. Let me just say – fourth grade is hard! Most likely, we will need to work with his teachers to develop a formal 504 plan next year in fifth grade. I want to ensure he will get the help and accommodations he needs in order to be successful in school.

In some ways, Rachel’s tics are more noticeable than Silas’, so it has been surprising that Silas’ tics have been more difficult to overcome in a classroom setting. Neurological disorders are tricky like that – they don’t manifest exactly the same in any two people. Having experienced TS with Rachel has not made me any more of an expert in handling TS with Silas. There are certainly some similarities, but there are many differences in the way TS has affected them.

My twelve-year-old son Caleb also has some tic-like behaviors, though he has never been officially diagnosed and his tics are not interrupting his daily life. My younger boys have had some mild tics come and go, though so far they have not demonstrated vocal and motor tics for a solid year, and their tics would probably not be noticed by someone without a heightened awareness of Tourette Syndrome. I do have a nephew who has been diagnosed with Tourette’s and who has some OCD tendencies as well. So if you know anyone doing a doctoral dissertation on genetics and Tourette’s, we are probably a case study waiting to happen. (I should say – if you know anyone PAYING participants in a study, we’re a case study waiting to happen. We’ve gotta pay for college for all these kids somehow!)

Up next in Part 4, Silas will tell you about his experience with Tourette Syndrome in his own words. 

Tic Tic — Tourette Syndrome, Part 2

This is Part 2 in a series of posts about Tourette Syndrome. If you missed Part 1, you can read it here

My daughter Rachel first started ticcing when she was only three years old. Throughout the years, some tics have come and then completely gone while others have consistently stuck around. Some tics have been just plain annoying, and some tics have been so absurd we’ve had to laugh.

From passing comments to long, tearful conversations, I’ve heard Rachel talk about Tourette’s many times over the past nine years. This week, I asked her to write a bit about it for you. So — in Rachel’s own words, this is what she thinks of Tourette Syndrome.

rachelumbrella

Tourette’s can be really annoying. The tics can make concentrating nearly impossible. When I’m working, my tics are like a person screaming noises at me. They get worse when I am tired, frustrated, excited or anxious. They also get worse when I think about them. If I just try to ignore the tics, they don’t bother me as much.

Tics are always with me — when I’m awake or asleep. *[Most information I have read insists that people with TS do not tic when sleeping, but we have seen Rachel ticcing in her sleep.]

Some tics are worse than others. Some are just little noises, but others can be painful! I used to gag myself. I still chew on the inside of my mouth when I am tired. Some tics can be funny. I make the Spanish “r” sound sometimes, rolling my tongue. And I sing.

But no matter how annoying, painful or frustrating my Tourette’s is, it teaches me not to let anything get in the way of what I love. If Tourette Syndrome doesn’t stop me from doing what I love, then nothing can.

I believe that my Tourette’s is just as much a part of me as my arms, legs or my brain is. Tourette’s is what makes me ME, special.

In Part 3, we’ll talk about the tendency for Tourette’s to run in families and when I first started seeing symptoms in my son, Silas. 

Tic Tic — Tourette Syndrome, Part 1

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.

rachelgradWhen 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.
Follow up with Part 2, Part 3, Part 4, and Part 5.

Giving Up The Dream Of Normalcy

ThingTwo

“Does your daughter have allergies?” The speech therapist asked.

ThingTwo was five and doing kindergarten at home with me, but we took her to the speech therapist at a local elementary school because of some severe stuttering that had developed over the summer.

“We thought she did,” I began. “But she’s been on allergy medicine for over a month, and she’s still blinking and sniffing a lot. I plan to call our doctor about it.”

The sweet speech therapist encouraged me to call our doctor sooner rather than later. “I don’t think she has allergies. Maybe you could call your doctor today.”

So I called our family doctor as soon as I got home and got the children settled. I had been a secondary education minor in college. I’d taken a class on The Exceptional Child; I’d blocked in a resource classroom. My mind leaped to the possibility of Tourette Syndrome. Over the phone, I described the blinking, the sniffing, the odd throat-clearing. I detailed all the other behaviors I had noticed – her twirling when she got nervous, the foot-stomping as she struggled to get words out, the bedwetting that had come out of nowhere in recent months, the impulsive bonks on her brothers’ heads with stuffed animals. And I held my breath, hoping our doctor would reassure me that these were all normal phases she’d pass through. I wanted him to laugh warmly and tell me she was fine, perfectly normal, that she’d be OK.

Instead, he said, “I really think you should see a neurologist. This is beyond my area of expertise.”

As the phone call ended, my tears began to fall. I trusted God. Mostly. And I wanted to believe that whatever happened, He would see us through and use it for good. But in that moment, my dreams for my daughter began to unravel a bit.

Later that day, on the phone with my mom, I sobbed, “I don’t want her to be different. I don’t want people to make fun of her. I don’t want life to be extra hard for her.”

When glowing young women rub their pregnant bellies, none of them hope and dream of days in neurologist’s offices, EEG’s, special teacher conferences, and a life of being different. Gradually, I had to let go of my dreams for ThingTwo, let go of my expectations, and accept a new reality.

As time has gone by, we’ve gotten used to Tourette Syndrome and it’s annoying interruptions – not only in ThingTwo, but also in ThingFour and a little bit in ThingThree. The throat-clearing, the eye-rolling, the face-stretching, the nose-scrunching, the arm-flapping, the foot-tapping, the shoulder-shrugging, the weird compulsions and lack of impulse-control, the blurted words and bursts of song – all of these are just part of our lives now.

We have bad days that bring tears. When someone in a church service or a classroom or a movie theater gives my ticcing child a dirty look. When insensitive middle schoolers mimic tics. When my son’s mouth hurts and he can’t eat because he can’t stop chewing on the inside of his cheeks. When my daughter has a horrible headache because she can’t stop rolling her eyes. Those are bad days. Those are the days we hate Tourette Syndrome. Those are the days I still grieve the dream that had to die, the dream of normalcy.

But there are days that aren’t so bad. The tics are harmless, maybe even funny – howling, opera singing, speaking in an accent, whispering the word perfect over and over and over. There are moments when we catch a glimpse of the good that can come from this crazy neurological misfiring. When ThingTwo’s experiences with Tourette’s cause an immediate bond with a new friend who also has neurological issues. When ThingFour wants to speak to his class about Tourette’s and educate them. When other parents email or call asking for information or advice, and our experiences can benefit someone else.

One of the very best days was when ThingTwo was only eight years old. She was frustrated with Tourette’s; her tics were awful; she came to me sobbing, “Why would God let me have Tourette Syndrome anyway?” That was a question I had hurled to Heaven on more than one occasion. I didn’t have an answer for it yet. Not knowing what to say, I pulled my girl onto my lap and held her while silently praying for wisdom, for an answer to give my daughter.

Immediately, a story flashed into my brain. I grabbed my Bible and said, “Listen to this!” Turning to John, chapter 9, I read ThingTwo the story of Jesus’ interaction with a blind man. Jesus’ disciples asked Him why this man had been born blind – did he sin in the womb? did his parents sin?

Jesus answered, “Neither. . . . this happened so that the work of God might be displayed in his life.” And then Jesus healed the man.

Another version words it this way – “this happened so the power of God might be displayed in his life.”

I hugged ThingTwo tightly, “Sweetie, you have Tourette Syndrome so that the glory of God, the power of God, the work of God will be displayed in your life.”

Later that evening, over dinner with a family friend who isn’t a follower of Jesus, ThingTwo retold that story from the book of John. Punctuated by eye-blinking and throat-clearing and lots of sniffing, she joyfully told this man, “I have Tourette Syndrome so the glory of God can be shown in ME! Isn’t that cool?”

That is a new hope and a new dream far better than any dream I could have had for her! Who wants to be normal anyway?

Head-Shaking, Arm-Flapping, Test-Taking ThingFour

He squints his eyes and shakes his head rapidly back and forth. He lifts his knees to touch the top of his thighs to the underside of his desk. He lifts his toes up and down inside his shoes. Discreetly, he tries to turn some arm-flapping into a stretch. And every time he reads a cool word, his brain repeats it, rolls it around and around in his mind, silently focusing on every syllable.

The head-shaking, knee-lifting, arm-flapping tics are repeated over and over again as he tries to listen to his teacher, remembers not to repeat any cool words out loud -only inside his head- and makes sure his arms don’t actually hit any kids sitting near him.

ThingFour has Tourette Syndrome and some mild OCD. And while it’s often an annoyance, it usually isn’t horribly disruptive to life. There are worse things, we remind ourselves.

But during state standardized testing days —– Well, Tourette Syndrome and standardized testing aren’t the most compatible.

The compulsion to repeatedly check and recheck and recheck every answer has tripped him up on tests before.

Reading test questions, looking at maps, lining up math problems while squinting up his eyes and shaking his head from side to side can be especially challenging.

Holding in tongue clicks and remembering not to whisper-repeat any fun-sounding words, like Ponce de Leon and Antarctica, requires mental energy that could be put toward answering test questions.

So today and on the other test days, I’m praying for ThingFour and for ThingTwo, his ticcing sister. I’m praying for focused minds and calm bodies. I’m praying for understanding teachers and neighboring classmates who are not easily distracted by knee-lifting and head-shaking.

And I’m bracing myself for some serious opera-singing tics when ThingFour gets home from school. After holding in tics and focusing on test-taking today, Tourette Syndrome will probably really let loose when his school day is over. Anyone have any song requests?