Tourette's - An Insider View

Editor & Founder of Conditional Publications, Vrinda Pendred, discusses how to talk to teachers about your child’s Tourette’s, and how to deal with bullying.

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. I also talked about the grief process and how it relates to Tourette’s, and the fear your child might feel on diagnosis. If you missed any of these articles, please click one of the links above to read them.

Last time, I promised to talk about the challenges your Tourettic child might face at school, with other children and even teachers. Serendipitously, the day after I wrote that article, my 11-year-old son told me sometimes his tics get him into trouble. For example, he was told off for ‘doodling’ in class, when really he had felt an insuppressible need to stab his notebook with his pen. But he felt unable to say, ‘I can’t help it; it’s Tourette’s,’ because that would mean talking about it in front of his classmates, and he doesn’t want to get bullied.

It’s also worth noting that at his previous school, I asked them to apply for Percy to be allowed extra time for his SATS (an important placement exam here in the UK), just in case stress made his tics flare up and prevented him from being able to write. The Head of Year shrugged it off and told me it was ‘unnecessary’. This same teacher told Percy in no uncertain terms that he was using Tourette’s as an ‘excuse’ to be noisy in class. When I cornered a much more sympathetic teacher on parent-teacher night and asked her about applying for extra time, she immediately agreed to it, and I could see the other teacher staring daggers at me with her eyes.

Any of this sound familiar?

Despite having Tourette’s myself, I can only partly relate to my son’s predicament. I remember being teased by other children (although not as many as you’d think) and being afraid to tell people about my condition; but I don’t recall my teachers over in Arizona, where I originally grew up, disbelieving me or punishing me for tics. In fact, when I was about 12 and OCD started consuming my life to the point where I had full-blown panic attacks every time my maths teacher, for exam days, moved the desks into cheat-proof rows, surrounded by empty space – he allowed me to sit my tests in his adjacent office, surrounded by comforting clutter.

Was I Just Lucky?

No. I got such support because my mother was behind the scenes (probably much more than I realised, as a child), constantly communicating with the school about my needs; and my teachers listened – as any good teacher ought to do. Jump ahead a generation, and here I am, behind the scenes of my son’s educational experience, constantly communicating with the school.

How Do You Discuss Tourette’s with Your Child’s Teachers?

I think it’s important to remember that, as long as it’s a good school, your child’s teachers want to help they just don’t always know how. Tourette’s is a rare condition (affecting less than 1% of children in the United States and perhaps 1-10 in every 1,000 children worldwide); and what is ‘known’ about it (from the media) does not provide an accurate picture. Unless you have known someone Tourettic, and maybe read several dozens of books and articles on the subject, and maybe even gone out and met other people with Tourette’s to compare notes, you can’t really understand Tourette’s. So, don’t expect your child’s school to ‘get it’ straight away.

My approach was first to talk to the Special Educational Needs Coordinating Officer (SENCO) before my son started at the school. After he told me he was getting in trouble for tics in class, I wrote an email to the Head of Year. Below are the most relevant sections of that email. If you’re struggling to think of how to approach the subject with your child’s school, feel free to take inspiration (or even lift whole paragraphs) from this email.

I hope you’re well. I would like to talk to you about XXXXX’s Tourette’s. I’m happy to discuss this with you over the telephone, but I thought I’d first write it all down, so you have something to add to his student file for other teachers to view, especially as he moves up through the years and meets new teachers for the first time.

I specifically discussed XXXXX’s Tourette’s with [the SENCO] back in July. But now XXXXX is reporting that there have been times when he has been told off for making noise in a lesson, he has been unable to stop making those noises because they are uncontrollable tics, he has tried his hardest to suppress the tics but this only makes them explode even more violently, and he then gets told off more and receives a detention.

XXXXX has felt unable to tell the teachers what is really going on, because it would mean explaining in the middle of lessons, in front of other students; and in XXXXX’s words, ‘I don’t want the other kids to make fun of me for it more than they already are.’ On that note, XXXXX is getting mocked and insulted for his tics on a daily basis.

I don’t know what can be done about other students’ reactions, but certainly teachers should know better. Punishing children for their tics is the equivalent of punishing a child in a wheelchair for being unable to run laps in PE. If some of the teachers don’t really understand or know how to recognise Tourette’s, there is a training need. I am very active on the Tourette’s scene and can recommend a number of resources.

Meanwhile, I can sum it up like this: 

  • If XXXXX is saying full sentences when he should be silent, yes, he is talking in class. 
  • If XXXXX is making random noises, or repeating words or syllables, or tapping his fingers or feet, or pushing things repeatedly or for extended periods of time, or staring at seemingly random things for a long time, or anything else that sort of resembles one of the items just described – it’s Tourette’s. 
  • If a teacher tells him to stop it, it will make the tics worse and more disruptive. No doctor / researcher understands why, but it is a known fact that’s just how Tourette’s is. 
  • There is no medication that can safely be given to XXXXX (particularly at this age) to make this condition go away. 
  • People with Tourette’s very commonly experience extreme depression because of the way other people treat them for it. At the less severe end of the emotional spectrum, they struggle in insecurity, self-esteem issues, self-consciousness, etc. 
  • The best thing a teacher / classmate can do for XXXXX is to ignore the tics entirely, unless he chooses to talk about them first. 
  • I have personally never seen XXXXX’s tics become loud enough to be truly disruptive, but if that is ever the case, punishments or discussions will only make it worse. Teachers should find a way to redirect his attention onto something else, and the tics might ease off naturally.

A Follow-Up Letter to the School

I also replied to a very kind email from our son’s English teacher discussing recent behaviour problems, which was copied in to the Head of Year. I wanted this additional information added to our son’s student record, for other teachers to refer to. Again, I have not copied the full email, here:

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My husband and I have observed that although XXXXX has always had concentration issues, the really serious behaviour issues he currently displays only started about a year ago.  Looking back, this coincides exactly with the time his Tourette’s started.

I have Tourette’s myself, so I understand how hard it is for him; although I first developed it when I was much younger, maybe four years old, so I think it came as less of a shock to me than it has to him, being diagnosed with a lifelong condition at the age of ten.

I took XXXXX to the CAMHS [Child and Mental Health Services] psychologist last week.  We’ve been on a waiting list for over a year, after further years attempting to get this support for him through other routes and just not getting anywhere.  I’m now waiting for a date for his first therapy session, to teach him coping techniques for Tourette’s, as well as anxiety and depression. At home, he regularly bursts into tears, calls himself names and says he wishes he had never been born. 

XXXXX tells us nearly every day that he is very, very angry about having Tourette’s.  He feels like he is being disabled from many things, even handwriting.  He frequently feels the need to stab his pen at the paper, and it prevents him from writing clearly.  He pounds violently on the keyboard, if he types (he did his last piece of English homework on the computer, by the way, because it was impossible for him to do it by hand – I hope that’s okay).  The worse it gets for him, the worse he feels, the angrier he feels, and the stress makes the tics worse – it’s a vicious cycle.  It also keeps him from getting to sleep, because he can’t stop jerking around, and I don’t think the exhaustion is helping things.  We also have to be so strict about his food and things like computer use, because he is so easily triggered by sugar and flickering screens.

My husband made an insightful observation, today – something even I hadn’t thought of.  He said, from XXXXX’s perspective, why should he even try to control himself if he lacks so much control over his body?  Not that we’re advocating that XXXXX not try to behave.  More that…maybe on a subconscious level, that’s how he feels: like giving up because he’s become a prisoner in his own body.

Another point worth mentioning is that Tourette’s is always worse during puberty / adolescence.  The chemicals involved in the disorder are directly linked to testosterone, oestrogen and progesterone; so, boy or girl, when you’re a teenager the tics just seem to explode, and it is awful.  It got much easier for me when I was in my mid-20s, as I expect it will for XXXXX – but that is a long way off!

How Did the Teachers Respond?

The English teacher telephoned me, and we had the most reassuring conversation. She was grateful for the insight into our son’s situation, expressed sympathy and understanding, and I came away hoping our son has her again in future years.

I was also invited into the school to meet with the Head of Year and discuss things face-to-face. He described for me all the strategies being implemented to help our son do well in school (some I had suggested, some the school had thought of), and they seem to be working. My husband commented that the school have gone above and beyond anything his school would have done back in the early 1990s so that is definitely positive.

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On the other hand, the Head of Year suggested maybe they could remind our son not to perform his tics, and hopefully he would get the hang of it one day. I said, NO. This is not like ADHD, where, for instance, with much time and practice, our son could probably learn techniques to stop himself from calling out in class. This is a physical problem that absolutely cannot be controlled. There is no appropriate treatment for him right now. The most that can be done is he can be trained (over many years) to find new ways to redirect the energy into ‘substitute tics’, e.g. instead of hitting his paper, maybe he could press his hands into his leg instead, so it’s less messy and disruptive.

In the Head of Year’s defence, he took on board this information and said he would ask the SENCO for more information on the subject, so he understands it better. He also had the creative idea of perhaps giving our son a sponge to stab, rather than his notebook – which I had to smile at! So, I don’t want to rag on the school. I just think this raises the point that, as with any uncommon medical condition, you can’t go in there expecting all the staff to be fully informed. Until the media catch up and start presenting Tourette’s in a truthful light, and until teacher training thoroughly covers this condition, you have to give the staff that information. The sign of a decent school is not that they instantly know about these things, but that they listen when you tell them, and then act appropriately.

What About Bullies?

Dealing with other kids is much harder than dealing with the school. Teachers should step in, if there is obvious bullying; but it’s very hard to control general teasing. It’s also worth bearing in mind that your child would probably get teased even if he/she didn’t have Tourette’s. Unfortunately, that’s just how it goes. So, Tourette’s or not, it’s something all parents must find a way to deal with. I have no one magic solution to offer you.

I have told our son to blow off any idiots, but not be afraid to talk about his Tourette’s with good friends. I assured him that the day I started talking about it was the day I learned they either hardly noticed it, or they thought it was (in the words of my dear friend Tara) ‘cute’! Not one of them judged me for it.

Our son took my advice and started telling friends. Guess what? They all said they hadn’t noticed. Even now that the tics are becoming more obvious, his friends all ignore it. They see through the tics to the person they know is inside.

Blowing off the idiots is proving harder. But, in a way, this is an important life skill he just has to learn with age and experience – because, let’s face it, you still have to deal with idiots even as an adult.

Closing Thoughts

I hope this article has been helpful for anyone struggling to know what to do about problems their child might be facing at school. I won’t lie: it can feel like a constant battle to defend your child. I said to my husband today that I can’t imagine what it must be like for those poor parents whose children have coprolalia (offensive language tics) but an IQ of, say, 140 – children who are too intelligent for a special needs school, but any mainstream school would probably refuse to have them in class. What other choice would those parents have but to home-school? How does it affect the child’s social life? What impact might it have on careers and household income? Disability benefits don’t provide much (in the UK, they seem to be cut every year). If this is you, my heart truly goes out to you.

Please do share your school experiences in the comments box below – and be sure to subscribe to this blog so you don’t miss our next article, when I’ll be talking about the effects of hormonal changes in adolescence on your developing Tourettic child.

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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