Tourette's - An Insider View

Editor & Founder of Conditional Publications, Vrinda Pendred, reflects on what it’s like to be a child diagnosed with Tourette’s, and why it’s so important for parents to bear in mind.

So far in this series on Tourette’s Syndrome, we have discussed what Tourette’s is, the causes and triggers, key medications (including anti-depressants), as well as alternative treatments, such as diet and vitamin regimes, and even more extreme measures. Last time, I wrote about the grief process and how it relates to Tourette’s. If you missed any of these articles, please click one of the links above to read them.

Today, as promised, I want to begin talking about what it’s like to be a child with Tourette’s. Most of the books on Tourette’s (and many other related conditions, such as autism) focus on children – so much so that you might be forgiven for thinking perhaps there’s no such thing as an autistic or Tourettic adult. Yet, all of the books I have personally come across are written from the perspective of a doctor or parent. I have yet to read anything for children with Tourette’s by adults with Tourette’s.

This is a huge, dangerous omission in the market. In my opinion, it gives parents a skewed view of what their children might be going through. Certainly, when I was growing up, I always felt like I was surrounded by adults (doctors) who wanted to tell me what I was feeling, while other adults (parents) would attempt to represent me to those doctors and inevitably get it all wrong – how could they not? I recall getting frustrated when my experience was misrepresented, and even more frustrated at being too young to know how to correct everyone’s mistakes; I was too young to form the right words to express myself accurately.

One thing I want to make clear is that each and every person out there is unique, and that means each and every child’s experience with Tourette’s will be unique. However, there are some commonalities that bear discussion, and that’s what I want to begin talking about in this article. So, if you’re reading this as a parent, please remember I am in no way attempting to represent your child’s experience; but I have lived with Tourette’s for over thirty years, now, and I want to share some of what I’ve concluded along the way.

The Terror of Tourette’s Syndrome

I think the most important thing to emphasise is that Tourette’s is scary – for the family, certainly, but especially for the person with Tourette’s. No one expects to have it; often, the parents won’t have it, although there may be a family history of other related conditions. So, when it hits, it feels sudden. Without warning, your child has ‘picked up an odd habit’ that just won’t go away. Without warning, your child is unable to control him/herself. Without warning, his/her life is turned upside down – and there is very little you can do to fix it for them.

To try to see it from your child’s perspective, just imagine how frightened you would be if you woke up tomorrow and suddenly couldn’t see, or couldn’t hear, or you couldn’t feel your legs. If you’ve ever broken an arm or a leg, think about how sudden and unexpected it was, and then imagine if someone had told you there was no way to mend you; you would be crippled for the rest of your life. Imagine living all those years thinking you are fit and healthy, and then one day you’re not, and you have to adapt. You have to find ways to live in spite of the discomfort and pain – discomfort and pain no one could have predicted.

Would you accept that? Would you try everything in your power to change things? Would you be angry? Would you cry endlessly?

Well, that’s what it’s like to be told you have Tourette’s. It comes out of the blue and you can’t change it. This is just who you are, now. And it doesn’t matter how young the child is when Tourette’s typically first strikes. My mother always says time shortens the older you get; likewise, the younger you are, the longer a year or even a week feels, because it represents a larger percentage of your life so far. So, if a child is diagnosed with Tourette’s at age seven, that means he/she lived about 85% of his/her life tic-free before suddenly being given a life sentence with no right to appeal.

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The Crippling Effect of Tourette’s

Now remember that Tourette’s is often disabling. To give some personal examples, I originally grew up in the desert climate of Arizona. Naturally, I loved nothing more than swimming. There was a time when I could hold my breath underwater for over a minute at a time; I was quite an adept swimmer. But when I was maybe fourteen, I developed a tic where I had to exhale heavily every time I went in water (almost like daring myself to expel all the breath I was holding), which made me choke enough times to scare me off proper swimming for life. To this day, I can’t bring myself to put my head underwater.

I also spent much of my childhood riding around on my bicycle. It gave me a glorious sense of freedom. But, again around fourteen, my eyes were darting so much that I could no longer see straight, which made cycling impossible. The last time I got on a bike, I was out riding with my then-boyfriend, Joe, and my vision went entirely black from optic nerve strain – at one of the busiest crossings in the city – while I was halfway across the road. I screamed in panic, and Joe came back for me, making the traffic wait while he guided me to the safety of the pavement on the other side of the street. If I had been cycling alone, I could have died.

The eye-darting also made it impossible for me to wear contact lenses, back before I got laser surgery in my late twenties (I can’t tell you how beautiful it felt to have my eyes paralysed by anaesthetic drops in preparation for that operation). The lenses would fall right out of my eyes. The optometrist suggested my eyes were too dry, and made me guzzle water all day. Not even I understood what was really going on. But eventually, I had to go back to wearing glasses, despite having a near-blind prescription that meant ultra-expensive glasses that shrank my eyes down to pins, so I despised my reflection in the mirror.

But perhaps the most heart-breaking moment came when I was twelve and had to give up baton. I loved – and I mean, loved – baton twirling. I was really good at it, too, and was accepted onto an elite team, a long goal of mine. There were lots of reasons for finally quitting (can anyone say ‘Dance Moms’?), but the final straw was my Tourette’s. One day, I was learning a move called The Bow, where you toss the baton up into the air, take a dramatic bow, look up and catch the baton. Well, my eyes were darting so much that I couldn’t see the baton and it hit me square in the eye. I was wearing contact lenses at the time, and the lens actually sliced open my right eye, not to speak of the bruising caused by the thick rubber end of the baton. I had to go to A&E and get patched up. When people asked me what happened, I made up a story about getting my timing wrong on the trick. I was about thirty before I finally admitted to anyone that the accident was caused by tics.

It’s hard to express how hard it was for me to make the decision to give up baton, after pouring my heart and soul into it for seven years. I think the biggest reason I couldn’t admit Tourette’s had led me to quit was that I didn’t want to admit it to myself. It would have meant acknowledging something bigger: that Tourette’s was disabling me from lots of things, not just baton, and there was nothing I could do for it.

At that early age of twelve, I found myself looking down into my future and seeing myself elderly and crippled by tics, possibly falling over a lot because of muscle spasms, breaking limbs, maybe even tumbling down the stairs and breaking my neck. Even a simple routine visit to the dentist leaves me temporarily depressed, because despite never having a cavity in my life, the enamel is cracking and breaking off due to grinding my teeth. The dentist tells me I really should stop that nasty habit, or I might destroy my teeth in old age. I think, Believe me: I would if I could.

Maybe your child hasn’t yet hit the point of thinking this way about his/her future with Tourette’s. Maybe it’s not even that bad for them – and I really hope it’s not. But if it is or ever gets that bad, these are the kinds of thoughts your child might be having. It’s just too frightening to put into words and verbalise it to you or to any doctor.

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To Speak or Not to Speak

Now comes the really difficult part: please don’t try to force your child to talk about their experience with Tourette’s. They may not be ready to face the facts. Speaking personally, I couldn’t bring myself to speak the word ‘Tourette’s’ until I was nine, and even then, I actually confessed my diagnosis to my dear friend Katie, in a late-night game of Truth-or-Dare. That’s how (rightly or wrongly) ashamed and frightened my diagnosis made me feel.

Not only that, but talking about Tourette’s can (for reasons no one can explain) inspire the tics themselves. So, if you say to your child, ‘I’ve noticed you’ve been jerking your right arm a lot, lately – is that painful?’ you are likely to see your child jerk that arm a lot more, at the mere suggestion of the tic. In other words, by talking about it, you could make the problem worse.

For all these reasons, I urge you to wait until your child brings up the subject, first. Then, make sure they know they have a safe space in which to express themselves without judgment, and with only support and love. But always privately bear in mind all the things they may not be saying to you about what they are experiencing since being diagnosed with Tourette’s.

Closing Thoughts

I hope this article has given you some food for thought.  Again, I do not propose to represent your child’s experience with Tourette’s.  I am simply sharing my personal insights into life with this condition.  If you have any thoughts on the subject, I’d love to hear from you in the comments box below.

In our next article in this series, we’ll be discussing bullying, not just from peers but from teachers who just won’t (or refuse to) understand. Be sure to subscribe so you don’t miss out.

Finally, if you’d like to read a detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app.  US Readers  UK Readers

Until next time….

Vrinda Pendred - Editor & Founder of Conditional Publications

Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.

Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder.  In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.

She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladderinspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.

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