Editor and Founder Vrinda Pendred discusses taking a more positive approach to Tourette’s Syndrome

Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, being a parent with Tourette’s and being a woman with Tourette’s. If you missed any of these articles, please click one of the links above to read them.

and making friends. If you missed any of these articles, please click one of the links above to read them.

At last, we have reached the end of this series, and I’d like to conclude by stressing the importance of taking a more optimistic look at having Tourette’s Syndrome.

Exploitation of the Media

When I see TV programmes about Tourette’s, they are always dramatic presentations of ‘sufferers’ on the brink of suicide, unable to function in their daily lives. Perhaps they punch themselves in the throats every few seconds, or swear and shout racial slurs over and over. I used to watch them, when I was in my late teens, still trying to figure myself out. I don’t watch them anymore. Why? They’re depressing. Worse still – they’re exploitative. TV largely makes its money by tapping into people’s voyeuristic tendencies. People love to be shocked, disgusted, horrified. I think it’s our way of consoling ourselves that all the terrible stuff happens to ‘other people’, to imagine we’re safe – like why we watch horror films. Misery sells, so TV producers go out of their way to deliver it to us.

The truth that such programmes don’t tell you is that most people with Tourette’s find ways to function in society. I say this as someone with quite a severe case of it. The last time I bothered to count my tics, I had over 40 different ones, bleeding into each other, connecting in painful, lengthening sequences. More have developed since then, but I no longer count them all. It’s not a competition. I am fortunate that I don’t swear uncontrollably or say any other such obscenities against my will. My vocal tics are more chirping and echolalia (though I suppose that could change, one day – they evolve all the time). However, on a physical level, I live in constant pain. There are many things my tics prevent me from doing. Parts of my body (my left arm, in particular) are permanently weakened / damaged. And I’m currently 37 – supposedly we’re meant to outgrow the tics in adulthood, but mine got worse. And yet I still function. I’m happily married with two children, plenty of close friends, my own home, and a really good career.

And I’m not the only one. I mentioned in the previous article that I went through a period of attending meet-ups with other Tourettics. One such gathering ended with dinner at a popular restaurant in Central London (where you see all kinds of people). One of our group that night is well-known in the UK Tourette’s ‘scene’. She runs her own organisation for helping kids with Tourette’s, got a book published (endorsed by Stephen Fry), and has been interviewed in mainstream newspapers and on TV. She has the swearing tics, and has learned to embrace and laugh about them.Another member of our group was featured in a documentary on Channel 4. Another recently won the first heat in a battle of the bands, with a chance to win the grand prize of playing at the annual Bloodstock metal festival up in Whitby. (Sadly, COVID-19 lockdowns put that to a grinding halt.)

Every one of us in that room was fully functional. It didn’t matter how severe the tics – we all had good lives. We were all what I would call ‘normal’. And after a while, I didn’t even notice the swearing, because the conversation was good and the laughs kept coming. I reckon other people would have the same experience if they gave such people a chance. And if more people gave others that chance, I think you’d see fewer people sobbing on the brink of suicide, unable to leave their house for fear of public abuse.

Because I know that fear does exist. I know because that same evening, the restaurant staff moved us to a private table in the basement room, away from the other diners. I kind of get it. If there were children, you wouldn’t want them hearing random obscenities, even if they weren’t intentionally spoken. Still, the experience of blatant, undisguised segregation really hit me. Little did the restaurant know they were sending a minor celebrity to eat in the basement!

But looked at another way: we got a private room and could be as noisy as we liked! And this is my point. My personal experience is that these days most people with Tourette’s learn how to live with it. We’re a remarkably resilient, adaptable lot. I think it’s one of these things, like trauma, where it either makes or breaks you. In my case, and in the case of many others I have met or spoken to online, it certainly did not break me.

Elegant Variation

If you look online, you can find all manner of studies suggesting that people with Tourette’s have impaired cognitive functioning compared to ‘healthy’ control subjects. (What does that even mean? I ask.) I don’t buy this. My son and I have both been invited to sit the official test for membership in MENSA. On the other hand, I have heard some people with Tourette’s complain that they’ve heard suggestions that the condition is linked with higher IQ and yet they feel pretty average, or maybe they’re even struggling in school.

There are also plenty of suggestions that Tourettics tend to be highly creative. I think there must be some truth in this, as everyone I’ve ever met with Tourette’s fits this stereotype – writers, musicians, artists, and so forth. However, I’m sure there are Tourettics out there who would find this stereotype frustrating, if they aren’t personally very creative – and, of course, there are plenty of creative people out there who don’t have Tourette’s!

Tourette’s is also one of these things that can make a person deeply introverted, hiding themselves away for fear of judgment. For others, the phrase ‘if you can’t hide it, decorate it’ seems to apply – they integrate their tics into their daily mannerisms and are extroverted as can be. Some of us even learn to laugh about our tics – for instance, there are plenty of tweets and social media comment threads full of people sharing their most hilarious shouted-out expletives.

What does all this tell us? That people with Tourette’s are as varied as people without Tourette’s. All that said, I do think Tourette’s comes with (or leads to) a certain personality profile. I don’t mean we’re all the same. I mean having Tourette’s shapes each of us as individuals. My unique chemical makeup affects more than my motor movements; it affects my emotional responses, how I think, who I believe I am. And now that I’m an adult, the experience of having Tourette’s has played a key role in shaping how I think, feel and react.

Final Thoughts

The medical world is determined to find a cure for Tourette’s. Worryingly, I’ve even heard talk of locating the Tourette’s gene – something that could only lead to things like Tourette’s tests on developing foetuses, and genetic modifications to remove the gene. Eradicating what is perceived as disability can be dressed up in any fancy language you like, but it’s still eugenics. I would not be who I am today without Tourette’s. If we found a cure tomorrow, I would not take it – because I like who I am, and that ‘cure’ would kill the person writing this article. Likewise, there is no way to know just how much we might change the whole of society if we were to isolate and eradicate the Tourette’s gene for all time.

There are those out there who will disagree – who would absolutely take that imaginary cure. That’s fine. Like I say: we’re a varied lot. And don’t get me wrong: there are some people out there genuinely on the brink of suicide because of their condition. But television programmes showing only the bleakest, darkest side of Tourette’s help no one. They don’t teach the world what Tourette’s is really like. They don’t encourage parents coming to terms with their child’s diagnosis. And they certainly don’t help that child accept their situation and themselves.

It’s time to start showing more people who have integrated Tourette’s into their lives and been just as successful as their non-Tourettic peers – because there are loads of us. Tourette’s doesn’t have to be a disability. For some, it may be. For most, it can be lived with. I don’t say that as a detached doctor or a parent who has watched it all from the outside. I say it as someone who’s done it.

At long last, we’ve reached the end of this series! As we come to the end of what has been an incredibly strange year (2020), I want to wish you all well and best wishes for a significantly better 2021. Be sure to subscribe to this blog so you don’t miss any future articles.

And 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 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 Ladder, inspired 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.

Editor and Founder Vrinda Pendred discusses the highs and lows of making friends when you have Tourette’s Syndrome

Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, being a parent with Tourette’s and being a woman with Tourette’s. If you missed any of these articles, please click one of the links above to read them.

This month, I want to spend some time talking about making friends when you have Tourette’s Syndrome.

Being the Only Tourettic in the Village

When I was a child, I didn’t know anyone else who had Tourette’s. I felt like that character in all the YA books / shows, who spends all their time pretending to be like the other kids – you know, ‘normal’ – because they fear that when the truth comes out, everyone will look at them differently and reject them. Only, I didn’t have a super power like Buffy the Vampire Slayer or Spiderman. I couldn’t see any way things could ever turn out okay.

As it happens, they did. I’ve said before: my friends didn’t care. They didn’t look at me differently at all. They had hardly even noticed my tics. I had built it up into a teen drama in my head, but it wasn’t as bad as that – in my case. If I had been the kid who had to do cartwheels all day, or punch himself in the throat repeatedly, or swear constantly…the story would have been different. I can’t begin to imagine how hard that must be – because there are kids out there just like that. They don’t have the luxury of keeping it secret and ‘pretending they’re normal’, like I did.

I’m not sure which is worse. On the face of, I guess you’d say having it out in the open is harder. In many ways, I’m certain it is. But the ones who keep it secret are hiding a fundamental part of who they are and exhaust themselves pretending it isn’t there, terrified of their secret getting out. It’s hard either way.

I grew up in the 1980s/90s, when Tourette’s wasn’t really something people knew about it. There’s still limited understanding of it today, but at least when you say the word, there’s a basic awareness of what you might mean. There was none of that, when I was a kid. There were no charitable organisations or Facebook groups arranging meet-ups. There was no real way for me to meet anyone else who faced the same challenges I did. I was just that lone weirdo at school or jerked around, blinked too much, and chirped.

If I’d known other kids with Tourette’s, I think that would have made a huge difference to my upbringing. I don’t believe your only friends should be others with the same diagnosis. However, knowing even one other child, my own age, who could relate to what I was going through likely would have helped me feel less weird, more able to talk about it, and more acceptant of myself. At the very least, there would have been someone to open up to when it all felt like too much – someone who knew exactly what I meant.

Searching for ‘People Like Me’

In my 20s, we had this magical thing I never had as a young child: the Internet. This was when social media as we now know it was only really just getting off the ground, so outlets were limited. However, I managed to find online forums for adults with Tourette’s.

With some trepidation, I signed myself up to attend a meet-up. My husband came with me for moral support. I was terrified, the way I always had been about meeting new people (I’ve since got over that fear, but it was severely debilitating when I was younger). About half the attendees were parents with children with a diagnosis, while the other half were like me – adults who had been diagnosed as children, or maybe in later life, but had never known anyone else who ticced.

That day was eye-opening. You probably expect me to say it made me feel like I belonged, at last – but it didn’t. In fact, what hit me most was how different we all were: that having Tourette’s didn’t unite us the way I had dreamed it might.

I came away from that meet-up feeling like maybe it was me. As I say, I was so bad at socialising, back then. I had obviously done something wrong, not made the most of the experience – something. So a few years later, I attended further meet-ups. This was around the same time that I joined a social media site for OCD and met others suffering with the same kinds of anxieties I always had, not to mention the same kinds of mood swings / depressive phases.

That was a crucial turning point for me. It was a time to indulge in all my worst thoughts, and all my worst feelings about myself. I realised I had been carrying so much ‘clutter’ inside me, and I needed to throw it all on the floor, pick through it, decide what to keep and what to throw away forever.

When I’d finished, I realised I didn’t want to be stuck in that place anymore. I didn’t want OCD or depression or Tourette’s to define me. For the first time in my life, it sank in that I wasn’t any of these things – I was Vrinda. And Vrinda is not the same as everyone else out there with a diagnosis.

I Already Had Friends

In time, it dawned on me that I didn’t need to find friends ‘like me’ – because I already had them. They didn’t have Tourette’s, but they were still more like me than anyone I had met who did. After all, does everyone who has diabetes feel an instant connection with each other? Of course not. They can share certain experiences, but that doesn’t guarantee they a lifelong bond.

Tourette’s can feel like such a huge part of your life that it’s easy to believe it must form a key part of your identity. And I guess in a way it does. I’m certain I wouldn’t be the same person if I hadn’t grown up with such a condition – and I’m wary of what it might do to me if someone magically found a cure tomorrow. I don’t think I’d take that cure. I put a lot of hard work into learning to love myself, and I don’t care to undo that.

But Tourette’s isn’t who I am – it’s something I have. And learning the difference is what made me feel settled in my skin at long last.

Final Thoughts

Yes, it’s important to meet others with Tourette’s, so that you don’t feel alone while you’re unpacking the experience, particularly when you’re first coming to terms with your diagnosis – no matter how long that may take.

But Tourette’s doesn’t need to be the centre of your life. You are so much more than your tics. We all are. So after you’ve unpacked everything, the way I did, it is so important to remember to look for all the other things that make up who you are and let them anchor you in the world beyond Tourette’s.

Next time, we’ll be talking about taking a more positive approach to having Tourette’s. Please be sure to subscribe to this blog 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 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 Ladder, inspired 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.

Editor and Founder Vrinda Pendred discusses what it’s like to be a woman with Tourette’s Syndrome, riding the hormonal roller coaster

Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, and being a parent with Tourette’s Syndrome. If you missed any of these articles, please click one of the links above to read them.

Today, I’ll be talking about what it’s like to be a woman with Tourette’s. As you’ll see in this article, this is a subject that does not get nearly as much attention as it deserves. As a woman myself, I think the neurological / medical community needs to put much more work and energy into this area to improve understanding and support. For now, the most I can offer is a starting piece to get the conversation going.

Monthly Cycles

I have previous explained how dopamine is a key component in learning, memory, concentration, mood stability and motor control. Too little dopamine and you can become moody, unfocused, unsettled, depressed, disinterested in life or, in extreme cases, catatonic. I have also discussed how dopamine goes hand in hand with serotonin, which plays a key role in mood regulation, emotions, sleep and appetite. Low serotonin levels are linked with eating disorders, loneliness, depression and self-harm – not to mention insomnia, panic attacks, anxiety, obesity, OCD, digestive problems and pain. This is especially hard on girls, as serotonin and dopamine are closely linked with oestrogen, which rises and falls every month, right through to menopause.

During a typical menstrual cycle, oestrogen levels rise twice and fall twice: they rise in the build-up to ovulation, then drop off sharply before rising again a few days later, and falling once more in the lead to menstruation. Alongside this, progesterone levels skyrocket after ovulation and then drop off just as dramatically after the egg is released. Speaking from personal experience, this means females with Tourette’s can experience periods of sharp mental acuity, good sleep, healthy appetite, feelings of confidence, and more settled bodies, including relatively minimal tics…alternated with periods of restlessness, insomnia, self-doubt, irregular appetite, and more dramatic tics. Bear in mind this is during a typical cycle. If you have irregular periods due to other underlying medical conditions (or simply stress, which is increasingly common today), the hormonal roller coaster can feel more extreme.

This can be especially hard during adolescence, when you’re trying to work out who you are but identity seems to be fluid; and you’re trying to come to terms with your medical condition, but the severity of your tics seems to change every week. Even now, at 37, I still feel this. I’ve just been on that ride so long that I’ve accepted it – but at 17, it was hard to take. It means I have spent years investigating the myriad ‘solutions’ on the market to address hormonal fluctuations, including oestrogen cream. However, when you read other women’s personal stories (and I believe it is so important to do this), it is quickly apparent that there is no ‘right’ level of oestrogen for all women. It entirely depends upon your individual body chemistry: what helps one woman could have disastrous results for another. I have never personally found a ‘solution’ I have felt comfortable with.

Contraception

I believe it is fair to say that most sexually active women today (in the Western world) will use some form of contraception, most of which are hormonal. Typically, they work by flooding the body with synthetic oestrogen and / or progesterone, to prevent conception. As you can imagine, this will impact upon conditions such as Tourette’s.

If low levels of dopamine and serotonin are connected with Tourette’s, we might predict that such contraception reduces symptoms – although, on the other end of the spectrum, too much dopamine is linked to paranoia, suspicion, aggression, wild mood swings and social withdrawal (symptoms of schizophrenia) – as well as OCD and ADHD. Again, it likely depends upon the individual.

Unfortunately, when conducting a search for this information today, there is absolutely nothing out there. As I said at the beginning of this article, this is a sorely under-investigated subject, and if any neurologists are reading this article, I humbly request that you please consider undertaking such a study, as data is badly needed.

As an aside, the non-hormonal copper coil (intra-uterine device) should not, on the face of it, impact natural oestrogen / neurotransmitter levels. Instead of introducing artificial hormones, the presence of copper in the uterus thickens the uterine wall, which interferes with the movement of sperm and therefore prevents conception. However, this thickening can cause the body to respond hormonally (for example, the coil is known to cause heavy periods – I once woke up so soaked in blood that it had somehow reached head level and drenched my pillow), which means for some women this could interact with tics (not to speak of other biological processes). Again, there appears to be no meaningful published research into this, to date.

Pregnancy

This is an interesting area, as oestrogen levels rise dramatically during the first trimester of pregnancy, and then gradually continue to rise right to the end. Such elevated hormonal levels must then drop off after the birth. If we consider that reduced oestrogen is connected with lower levels of dopamine and serotonin, it is unsurprising that so many women struggle with postpartum depression and anxiety (and this is before we even consider the hard physical work the woman has just undertaken, and the work she must continue doing now that the baby is born).

Again, there is just not enough research into this area, in relation to Tourette’s. However, I can share anecdotal evidence: with both my boys, my tics seemed to vanish by the end of each pregnancy, and they returned in full force after the birth (worse than they had been since I was a teenager, even) – along with extreme OCD and low mood. This was compounded by my time spent breastfeeding, as oestrogen levels are generally lower while feeding. I know some women take to pregnancy and breastfeeding like a duck to water, but this was not me. I found that whole time indescribably difficult and only truly enjoyed motherhood once breastfeeding was behind me. There were times during the first few months of my sons’ lives when I had to hand them over to my husband because I was in danger of pressing in the babies’ skulls with my finger tics. As I discussed in the previous article, this had emotional repercussions, as well as physical. With my second child, I was mentally prepared for this. With the first, I had no warning, no frame of reference, and it was devastating and terrifying.

Menopause

I have long had a great fear of menopause – purely due to my medical conditions. The whole point of menopause is a gradual and permanent reduction of oestrogen and progesterone. It does not happen in one steady fall, rather in stages, until eventually your hormone levels flatline and should never rise again.

We all have rather unflattering, unsupportive ideas of menopausal women – of them being moody, irrational, forgetful, and so on. In many ways, it can replicate symptoms of ADHD. Again, there is a frightful lack of research into the interaction between menopause and Tourette’s. A quick online search predominantly brings you to women’s personal blogs about the experience, but this too is limited. However, we can make an educated guess that tics must worsen (or perhaps rise and fall and rise and fall again) during this time. My hope is that by the time one’s hormonal levels stabilise, so too do the tics.

I would be deeply interested to hear other women’s experiences with this. However, even as recently as my own childhood, Tourette’s was a largely misunderstood condition with a low diagnosis rate, which leads me to guess that we might not hear such stories until my own generation goes through the menopause ourselves and we begin to speak out.

Online searches do produce results of some women enquiring about the use of HRT (hormone replacement therapy) to treat fluctuating tics during menopause. However, there are many potential side effects of HRT, and so this unlikely to be a solution for all.

Final Thoughts

As warned, I’m afraid I haven’t provided much in the way of hard answers. The purpose of this article is mainly to open up discussion on a much-ignored subject that I feel quite passionately about.

I also invite everyone to be supportive and understanding of the girls / women in their lives who are struggling with Tourette’s. Hormonal changes are a fact of life. There is no getting away from them. Perhaps all we can do is remember what our daughter / sister / wife / friend is going through, be there if she wants to speak about it, and support her through it – the way I would hope we would do for anyone with Tourette’s, but acknowledging that for females, that waxing and waning can present itself still more dramatically.

Next time, we’ll be talking about making friends when you have Tourette’s – particularly, the pros and cons of finding other people who have Tourette’s themselves. Please be sure to subscribe to this blog 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 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 Ladder, inspired 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.

Editor and Founder Vrinda Pendred discusses what it’s like to be a parent with Tourette’s Syndrome – especially when your child inherits the condition

As promised, my goal tracker app shot up an alert this morning to say it was blogging time, and here I am!

So far in this series, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, and how Tourette’s affects self-esteem. If you missed any of these articles, please click one of the links above to read them.

Today, I’ll be talking about what it’s like to be a parent with Tourette’s Syndrome – especially when your child develops tics / Tourette’s themselves.

Birth and Infancy

This is a bit of a heart-breaking subject, for me, which I have to break in two parts. I’ll start with the birth of our eldest son, back in 2006. I was just 22, going on 23, and my tics were at their peak. They had never been (and never were thereafter) as bad as they were during that time. I expect due to hormones (something we will discuss next time), after the birth all I wanted was to be unconscious to escape the living hell in which I now found myself.

Every time I tried to hold my beautiful new baby, my hands seized up, consumed by a terrible electric need to press my fingers as hard as I could into my baby’s body – often his head, I think precisely because it was the softest, most fragile and important part of this new developing creature over which I suddenly had so much power.

There was an element of OCD in this, too. It is extremely common for new mothers to develop symptoms of post-partum Obsessive-Compulsive Disorder. The sheer thought of how responsible you now are for someone’s whole being can lead to some awful thoughts. Fears of hurting the baby can quickly morph into visions of actually doing the very things that would hurt him, and those visions can be so intense that you might worry you’re actually going to do manifest them.

Naturally, you never would. That’s why the visions are so frightening and terrible, maybe even sickening – because they conflict so strongly with your sense of ethics and love for the child. But fear and logic have never been good friends. Fear is a bully that beats logic out of the schoolyard, and before you know it, you’re in a state of perhaps physical panic at the thought that you might actually want to harm your baby. Worse still, you’re terrified to admit this to anyone, out of yet more fears, this time that someone will decide you’re unfit to be a mother and take your baby from you (which I’m sure used to happen before we understood as much as we do today about psychology). All of this means it is common to suffer in silence.

I went through this with both my children. Thankfully, I was educated enough on the subject to understand what was happening and know this did not make me an unfit parent. Unfortunately, Tourette’s is not as easy to control, although it often seems to have similar triggers to OCD. I didn’t just have visions of hurting my son – my hands would feel a physical craving to press and squeeze him in ways that really would hurt him.

I tried to do it gently enough that it would feel affectionate. But my brain didn’t accept that. I had to find other objects to press (so hard that my fingers went white) as a substitute, but even that didn’t feel right. It got so bad that I often had to hand my son over to my now-husband because I didn’t feel able to handle our baby safely. I can’t adequately express the depression that came over me in having to accept that sometimes I just couldn’t hold my new son.

The Toddler Years / Second Child

All of this passed once our son was older and sturdier, more solid and less fragile. It also wasn’t quite so bad with the second child, born when I was 33. My tics had settled much more by that age and my body was not subject to quite the same hormonal fluctuations I experienced when I was younger. I’m not sure if this is 100% down to age, or if it’s also because I changed my entire diet and lifestyle over the years. For example, I cut out all cow milk about two years before our youngest was born, which I’m certain had an effect of some kind.

The OCD was just as bad with both boys, regardless of my age, although it got better as they grew more independent. Even so, this lasted many years, and I would advise any parent in my position to avoid the news if they’re struggling with this kind of thing. As soon as you have a baby, it seems all the headlines are about the horrors that can come to small children. Some still haunt me 14 years on.

With both our children, there has been a sad sense of wishing their younger years away because I found them so hard to cope with. I don’t feel I have ever been able to enjoy the pregnancy / new parent experience in quite the same way as many other new mothers – but I’m sure many other women would say the same, even without Tourette’s. Much of that may simply come down to modern life and cultural pressures making us feel we’re failing to meet expectations. Even so, Tourette’s and OCD added a fear factor no other mother I know is able to relate to.

When Your Child Develops Tourette’s Himself

Statistically, most children start showing symptoms of Tourette’s between the ages of 5 and 9. For example, I was diagnosed at 7, and showed signs of it much earlier. So, imagine my shock when our eldest son began ticcing for the first time at the age of 10.

I confess I had that age statistic in the back my mind pretty much since our son’s birth. Part of me watched him like a hawk for any sign that he might have inherited my condition. When he turned 10, I was very openly relieved he had apparently escaped my personal fate. Then, some months later, I saw his first tics – and I denied them. I rationalised them with other possible explanations, because I couldn’t accept what I was seeing. Finally, he broached the subject, as they were causing him a great deal of discomfort, and I could deny it no longer.

I went through the grief process all over again, but this time over my child. I had got used to living with it and that had somehow become okay. To watch my son go through it was another thing. I couldn’t stand the idea that he was saddled with this incurable condition that I knew would impact every aspect of his life, cause him pain, and potentially prevent him from doing many things he formerly loved.

So much worse was the idea that I had done it to him – I had passed it on. I felt inundated with a deluge of guilt that would not abate. I spent a long time begging (whom I don’t know) for it to pass, just for him – for it to be a temporary response to stress, perhaps. I pleaded for it not to get any worse than it was. I felt furious (with whom or what, again I don’t know) that this had happened to my child. I kept thinking my beautiful boy was now marred by this awful thing and there was nothing I could do to stop it from happening. I went through a similar experience when he briefly needed eyeglasses (another thing I felt I had passed onto him). I couldn’t stand the thought of putting something over his beautiful face. It all felt so wrong. I was utterly powerless to protect him from the cruelty of genetics.

As it happens, I think the tics were largely brought on (or at least worsened) by stress. He was going through an extremely difficult time, in school and in life, with his Year 6 SATS coming up and a new brother on the way. When he moved up to secondary school later that year, his tics got worse still. Over time, he was placed on ADHD medication for about 9 months and they made the tics unbearable; he could hardly function. We took him off the medication and the tics seemed to settle. These days (touch wood), I forget he even has Tourette’s. I have sometimes wondered if it simply vanished, but occasionally he will mention that the tics are giving him a hard time, so I guess it’s still there. Even so, he’s nothing like I was at his age, so I guess someone listened to my pleas after all.

As I write this, his brother is 3 years old. This time around, I have forgotten to watch out for things like tics. I’ve learned the value of just letting life play out as it will. Otherwise, I’ll waste these years in a state of stress and anxiety, rather than cherishing this brief moment of time while I have it.

‘He’s so lucky to have you as his mother!’

With our eldest, I have lost count of how many times people have said to me, ‘He’s so lucky to have you as his mother. You’ve been through it yourself, so you know what he’s going through.’ I always tell them: actually, I don’t know. Sure, there are some things I can relate to, and my awareness is a definite advantage, as it means he never has to live in confusion about what’s happening to him; and I can step in to provide more education for some of his teachers or other parents, if there’s a problem. But as he loves to remind me, he is not me, and we are on very different paths. Despite my own diagnosis, in many ways I am just as clueless and helpless as my own parents were with me.

I have tried to encourage him to blog about it – to share his own experiences and get the information out there to everyone, while letting out the frustrations he feels at the same time. He did this for a time but didn’t keep it up. I believe he keeps a personal journal, which serves the same purpose. He might decide to speak up about it more when he’s older. The school often tell us stories about him stepping in to support and mentor other children struggling with stress or unhappiness or feelings of not being good enough. I take this to mean he is finding ways to channel his own experiences in a positive way. Whenever he has dealt with bullies or ignorance about his diagnosis, I have encouraged him to tell people openly that he has Tourette’s, and teach them about it. I am a strong believer that knowledge and education is the best defence. Otherwise, I can only do what my parents did for me: let him find his own way.

Final Thoughts

I hope this has article has been helpful in some way. It’s not a topic I’ve seen much written about, and I hope that starts to change. Next time, we’ll be talking about something else I never really see people discuss: what it’s like to be a woman with Tourette’s. The female hormonal system and its interaction with neurotransmitters (and therefore Tourette’s and other related conditions) presents a whole set of additional complications and challenges that boys / men will never have to deal with, and we need to get it out there in the open.

Even if you’re a man, this is an important topic to help you understand your daughter / wife / girlfriend / friend / sister / mother / cousin dealing with the condition, so please be sure to subscribe to this blog 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 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 Ladder, inspired 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.

Editor and Founder Vrinda Pendred discusses how living with Tourette’s Syndrome can impact on self-esteem – especially during adolescence

I need to begin this article with an apology. I began this series whilst on maternity leave in 2017. I returned to work in the second week of January 2018. The last blog article in this series was published on 30^th January 2018. Trying to juggle a baby, a teenager, the school system, commuting, a day job in the financial services industry, over a year of intense finance exams, and a personal life (ha!) was challenging and something had to give. Unfortunately, that ‘something’ was blogging. But I’ve downloaded a goal tracker app (to be discussed in a future ADHD article!) and my plan is to publish one article a month. Wish me luck!

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. We then talked about the grief process and how it relates to Tourette’s, how being diagnosed can be scary, having to deal with bullying and teachers, and surviving adolescence when you have Tourette’s. If you missed any of these articles, please click one of the links above to read them.

As promised over two years ago, this time we will be talking about self-esteem. This is a loaded subject even without medical diagnoses. As a child, if we lack nurturing from our caregivers, this can have lifelong consequences on our development and sense of self. Even if our home environment is loving and supportive, school can be a stomping ground, where peer pressure, bullying and exams hold the potential to damage our confidence. I don’t believe anyone makes it to adulthood without at least a few battle scars, and for some it’s worse than others. For those who have a harder time, they might find ways to heal and move forward, or they might get stuck. The shaping of identity is never straightforward, and the outcome never certain.

My personal path was a hard one, but it ultimately led me to a good place. I underwent many traumatic experiences during the first twenty years of my life, some of which were medical in origin. In a previous article, I talked about a psychotherapist who told me there was nothing wrong with me – I simply needed time to process and overcome the trauma of living with Tourette’s. I have also shared that I was afraid to talk about my diagnoses. Needless to say, this kind of thing affects one’s self-esteem.

Body Image

Teenagers (and many adults) often battle with body image, and I was no exception. For years, I found it almost physically painful to look at myself. I hated mirrors because when I checked my reflection, I would see myself tic and it looked ‘ugly’. I also hated watching myself in home videos. I had less ‘control’ over the tics during adolescence and they were much more extreme than they appear today. I have videos where my head is jerking violently, my eyes are darting and squeezing shut so hard that my whole face is contorted, my nose is twitching, my mouth is pulling from side to side, my head is straining to reach my shoulders – and that’s not to speak of what the rest of my body is doing. But it was my head tics that most upset me. Living with it is not the same as watching yourself do it. When you’re inside your body, doing the ticcing, you can almost forget about it. It might be painful, but after a while it becomes so commonplace to you that you do it without thinking about it. But when you’re forced to see it for yourself, the thought hits you: ‘This is what others see.’

In fact, when I ‘came out’ about it at thirteen (I.e. when I started openly speaking about it with friends for the first time), all my friends told me they hardly noticed it. I may have already said this in a previous article, but one of my best friends in the world said something like, ‘Oh, you mean that little twitch you sometimes do? I’ve always thought that’s just that cute thing Vrinda does.’ Maybe it’s a bit like having an eating disorder: everyone tries to assure you that you look great, but every time you look in the mirror, all you see is fat. For me, everyone tried to assure me that they hardly noticed the tics, but when I was forced to confront myself, I saw a twitching, writhing mess. If I’m being really honest here, I thought I looked ‘like I had mental problems’. I felt like an imposter, pretending to a normal girl, when in fact I was the crazy person you tried to avoid on the street. Having OCD didn’t help these thoughts!

Have you ever visualised yourself and what you might look like? Try it now. Wherever you are, look away from this screen and up at nothing in particular. Try to get a sense of yourself, an idea of your appearance. Examine what you look like, but from the inside out. Then look in a mirror or your phone’s camera feature. Does it match your visualisation? Mine never did. Not even close. It was heartbreaking to think that what others saw was something not real, not really me. I spent years feeling like there was a real person inside, trapped in a body that didn’t reflect the truth within. I tried to console myself with the thought that anyone who truly knew and understood me would see through the surface to the person I visualised myself as – but it was impossible to know for sure. (Remember – OCD!)

This, combined with the eye tics, made it extremely difficult to hold eye contact with anyone. I couldn’t bear the thought of them staring at a face I didn’t want to look at myself. I was forever projecting thoughts onto others, imagining I could read their minds and see myself through their eyes, their perspective – and that perspective was never good.

Dating

As I moved into the arena of dating, this hatred of my face, in particular, gave me new reasons to feel bad about myself. I felt ‘ugly’ and didn’t believe anyone would ever find me attractive. I felt I made up for it with a big personality (although I struggled with insecurities about this, too), but that ultimately no one would ever think I was truly beautiful. It didn’t help that I ripped up my fingernails and pulled out my own hair – not classically ‘feminine’ traits! I have also always found it difficult to hold hands. It triggers my fingers to spasm and press against the other person’s hand. Hugs do this too. There’s no way to hide the tics when they’re digging your fingernails into someone else’s skin. As a teenager, this meant having to explain myself to people, and that meant admitting I was a ‘freak’.

Physical Disability

Then we get into physical ability – or lack thereof. Seven years twirling baton, finally at a competitive level, ended after tics made it impossible to twirl safely. (Tip: Don’t toss a baton in the air and then catch it with your eye – especially whilst wearing contact lenses!) It would have ended anyway, as competitive sports are not for me. But the suddenness of my exit, and the reason for leaving, was upsetting. I recall lying about what had happened. I didn’t want to acknowledge it was tics that had got in the way. I blamed everything on not finding classes fun anymore, when inside I was devastated at the turn of events. Likewise, when breathing tics made swimming impossible, I lied and said I just didn’t feel like swimming anymore – but that was ridiculous. I was made for water.

Confronting Myself

My eldest son (who is now fourteen) was diagnosed with Tourette’s when he was ten. I hope he doesn’t think of himself as ‘ugly’ like I did, but he does find it next to impossible to look at himself in the mirror. I’m not sure if this is due to a simple feeling of awkwardness (staring at yourself can be a strange experience if you’ve not done it much before) or lack of confidence. He’s still too young to explain it fully. All I know is he doesn’t like it.

He has his own battles with self-doubt, like we all do, but I think things are improving. In terms of Tourette’s, he’s one of the lucky ones: his tics have reduced greatly (coming off ADHD medication helped hugely with that). But for some children (like me), that miracle doesn’t come. How do those kids overcome the ‘trauma’ of having Tourette’s and learn to like themselves?

I believe the answer lies in acceptance.

I was also diagnosed with autism. This, combined with years of depression, meant that when I smiled for photographs, the pictures showed me I wasn’t smiling at all. I looked downright miserable and didn’t seem to know how to smile. The canyon between my outward appearance in my inner self seemed to be widening with age and I needed to do something about it before I lost all sense of connection to myself.

So, in my twenties I started practising smiling in the mirror each night before I went to bed. For the first time, I faced myself.

The smiles were forced, in the beginning. I studied them and memorised the feeling of my facial muscles when I truly smiled, so I could replicate it without the mirror one day. Over time, the smiles became real. I grew used to greeting myself and bidding myself goodnight. I became familiar with my face and I accepted it. At some point, that face became my image of my self.

The vital point is that rather than turning away and denying the tics, I stayed with them and watched them happen. I allowed myself to think all the hateful things I thought about them, and I stuck with them, night after night after night. After a while, it got boring. The tics were just tics. They weren’t ugly anymore: they were what they were.

You Are Not Alone

Just as important, I made an effort to meet others who had Tourette’s. For the first time, I watched others who were like me and realised I wasn’t some lone freak. And if I didn’t think other were ugly for it, and I didn’t think they looked crazy, why would anyone think that about me? Maybe some will – but those types of people probably aren’t anyone I would like to know, so why should I care what they think? It was time to stop assuming the thoughts of others and start listening to all the nice things they actually said.

Regaining Confidence

My adolescent fear was wrong: I married someone who has called me ‘beautiful’ many times. We now have two beautiful children, and people say they look like me, so that must also say something about me. I have a successful career, proving I am capable of quite a lot, after all. At work, a colleague recently commented that he had never noticed me tic – ever – and he has known me over thirteen years. I am actually still ravaged by tics, but again, I must see them more than others do, and I have finally accepted that. I can also watch myself in home videos (even ones from my teenage years, when the tics were visibly at their worst), because I now know Tourette’s does not define me – it’s just that cute thing Vrinda sometimes does.

Just last month, one of my oldest and closest friends (an ex-boyfriend from high school, in fact) told me I’ve become prettier with age. He said it isn’t anything physical – it’s something about how I now carry myself. I found my inner spark. As a child, I think I had that spark, but I lost sight of it as a teenager. Feeling disabled and ‘freakish’ made it hard to see all the things I could do and be. But literally facing myself time and time again, and learning to accept my limitations and oddities, helped me see those positives again. These days, I still end my nights smiling at myself – but it’s no longer a test. I just think it’s important to smile at your friends before you say goodbye for the day.

I can’t tell you how to find that inner spark, or how to help your child find it. Everyone has to find their own way back to themselves. But what I can say is that the only way to heal from any trauma is to look it in the face and accept it as a fact of your life. How you take that step, and what you do afterwards, is down to you.

Next time, I’ll be talking about what it’s like to be a parent when you have Tourette’s – whether your child has Tourette’s or not. Please be sure to subscribe to this blog so you don’t miss out – my goal tracker app says I will be publishing the article next month!

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 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 Ladder, inspired 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.

Editor & Founder Vrinda Pendred shares a letter written to her local MP urging attention to be given to child & adolescent mental health.

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. We then talked about the grief process and how it relates to Tourette’s, how being diagnosed can be scary, and having to deal with bullying and teachers. If you missed any of these articles, please click one of the links above to read them.

I am so sorry for taking so long to write the next instalment in this series, but it’s been a difficult time, personally – for reasons directly relate to the series. On the back of that, I thought today I would share a letter I am sending to our local MP regarding our situation. If any of this resonates with you, I would urge you to take action wherever you are, too. If you’re in the UK like me, please click here for ways to contact your local authorities.

Dear ……….

I am writing regarding the shocking lack of care and support for children with special needs in the Stevenage area.

My son X is now 12 years old. He was diagnosed with autism around the age of 6. During that assessment process, the specialist at the Child Development Centre (CDC) told me it was ‘obvious’ that he also had ADHD, but NHS policy is that he can’t be assessed for two things at once, so they put him on a waiting list for a separate ADHD assessment. We waited and waited. It’s now been about 6 years and it still hasn’t happened.

Meanwhile, his mental and emotional health has tumbled year on year. By age 7 he was nightly having violent fits of rage at home, screaming, slamming doors, throwing and breaking things, slamming his head repeatedly against walls, screaming that he wanted to die, over and over. Still, we received zero support. The primary school he attended had placed him with a teacher who thought it sensible to throw him out of class every day rather than help him. She was fired and replaced by another teacher who did the same thing. She was fired and finally he was placed with a teacher who was simply nice to him and could see his potential and he did quite well.

There were then ups and downs over the years depending on teachers’ attitudes. In year 6, all the teachers had no time or patience for him and it got back to the stage it was at age 7. X actually began self-harming, ripping literally all the skin off the back of his hand, or his whole cheek, and gushing blood everywhere, then scabbed over for weeks and weeks. Much of this came down to him developing Tourette’s syndrome and OCD. One of the teachers flat out refused to listen to any of my insights about Tourette’s (I have it myself). She rejected my request to apply for him to have extra time on his SATS due to the distraction of tics and ADHD issues. I had to go behind her to the Deputy Head to arrange it.

Things got worse and worse and, as I was then on maternity leave for a year, I took him out of school for the final months of year 6 and home schooled him. The result was that he did so well on his SATS (112/120, with 100% on one of the maths reasoning papers) that he was placed in the top set for everything at secondary school. I tried to apply for him to have an EHCP through the local authority, to give him a positive start to his return to school. This application was previously made by the primary school. Both times, he was rejected on the grounds that he’s ‘too intelligent’. They disregarded all our points that intelligence doesn’t matter if you can’t make it through a lesson and learn any of the material.

Secondary school has gone horribly wrong. X was getting thrown out of class and sent to detention every single day until I made the school understand that it was ineffective on him because he was being punished for things often beyond his control and he just needed patience and understanding. Within the first month of school, the head of year told me maybe X didn’t belong in mainstream school. But there is nowhere for him to go unless a) we can somehow send him to private school or b) my husband or I can quit our job and homeschool for him, which I don’t think would benefit him. We can’t afford either option. The schools for children with special needs are all for kids with learning disabilities. X got placed in the top set for all classes. The SENCO agrees he doesn’t belong in a special school. She agreed there is nowhere really for kids in his position.

The head of year also told me X ‘just needs to learn to control the Tourette’s’, demonstrating a total lack of understanding of this condition. When I explained that is like saying a diabetic just needs to learn to control their insulin reactions, he didn’t understand how it was related, convinced Tourette’s is a psychological issue one can train oneself out of. I actually rang Tourette’s Action for help and they said they could give the school staff training. I’ve told the school. I don’t know if it’s being taken up. And for the record, X isn’t yelling swear words in class. He’s jerking around physically and can’t stop it, and then being yelled at by school staff and thrown out of class for being ‘disruptive’. Then he gets angry and he’s told his anger is unacceptable. Most of the staff won’t listen to anything I have to say regarding their attitudes to his condition, or his heightened anxiety and self-loathing being at the heart of every scenario. In fairness to the staff, I appreciate X can be challenging – but he is also a wonderful boy at the heart of it all, a boy who is struggling in a system he can’t fit into. That’s not necessarily the school’s fault – but it does demonstrate why he should have had intervention all those years ago when we first started applying.

When we first tried to get X diagnosed with Tourette’s to make it official with the schools, the GP decided he was an expert and that X didn’t have it and needed no referral. We had to fight to get the referral to the paediatric neurologist at the hospital, who said it was ‘obvious’ X had it and needed help and they were shocked at the attitude we had faced with it from other professionals. They then referred X for support at the Children and Adolescents Mental Health Services (CAMHS). That turned into a review meeting with a different person at CAMHS, every few months, telling the story from scratch each and every time and being told each time that we’d have regular sessions set up soon. After over a year had gone by, I got quite frustrated and was finally told they had no doctors. They were trying to interview for the position and not getting anywhere. After about 15 months, a temporary doctor was brought in from London and saw him six times and then said she had to ask permission for more sessions, after not addressing anything we initially sent him there for. She has said we really need to get him that EHCP but can’t try applying again until we have that ADHD diagnosis in writing.

We had a review meeting at the hospital regarding the Tourette’s. I took that time to ask yet again for the ADHD assessment to be done. This doctor at the hospital was also temporary and admitted she knew nothing about the local system. She sent a referral to the CDC, who wrote to me to say it had been ‘refused’ due to needing information from the school. Why can’t they just contact the school!? The GP rang me and said they had a copy of the letter and yes, the school need to do the referral. The GP said they personally have no involvement in the process. I asked the school and they said they never make such referrals and have no permission to do so and it needs to go through the GP. I rang the CDC again and was told to speak to someone who never answers her phone and won’t return my calls.

It has been SIX YEARS. Every single institution has failed us – the schools, the GP, the hospital, the CDC, CAMHS, and the local authority. Who cares how smart my child is if the teachers tell me he can’t make it through a single lesson without support that they can’t afford to give, and so he’s being kicked out of class left and right and spending most of his days in learning support not being taught anything. He is failing all his classes. Each report card is worse than the last. He is gaining a bad reputation that has led many parents to talk about him and stop talking to me, and led many children to walk away from him so that he’s losing good friends and falling in with the misfits and getting into terrible trouble. He’s only 12, so there is still time to turn it around before he’s at an age when things like drugs and alcohol abuse come into the picture. My child has so much potential and everyone is just leaving him to the most awful fate I can imagine. Moreover, my husband is a social worker and we have identified that X displays every warning sign for potential suicide. I keep saying if he really were in that position, he would probably be dead by the time any of these institutions took the time to intervene.

And X can’t be the only one. There must be other children lost in this outrageous system, simply because a bunch of adults think it’s somehow more important to fill in such and such form than to help a child in crisis – which is exactly what my child now is. Even if he somehow comes out of this okay, he can never get these precious years back. He will never be a child again. He is so angry and depressed and hates himself so much and thinks so badly of himself. It is beyond heartbreaking to see and hear. This is going to impact him forever, one way or another. This system CANNOT go on the way it is. It’s actually criminal. You see all these NSPCC adverts about children being abused at home. What about the abuse and neglect they suffer from government-funded institutions?

This NEEDS attention NOW.

Thank you for your time,

Vrinda Pendred

In our next article, we’ll be talking about how Tourette’s affects self-esteem, especially during adolescence. Please be sure to subscribe to this blog 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 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 Ladder, inspired 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.

Editor and Founder Vrinda Pendred discusses how those ‘raging hormones’ in adolescence can make Tourette’s Syndrome worse – and how to cope.

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. We then talked about the grief process and how it relates to Tourette’s, how being diagnosed can be scary, and having to deal with bullying and teachers. If you missed any of these articles, please click one of the links above to read them.

We all know about ‘raging hormones’ in adolescence. I think most of us are aware that the key hormones involved in puberty are oestrogen (for girls) and testosterone (for boys), the production of which increase dramatically within the body during that difficult time. But what’s not often talked about is how those hormonal changes affect neurotransmitters – chemicals in the body that pass information from one neuron to another – particularly, dopamine and serotonin.

The impact on these neurotransmitters during adolescence means it is likely to be an especially challenging time for a child diagnosed with a condition like ADHD, OCD, autism or, of course, Tourette’s Syndrome. No one told me this, when I was a teenager, but it is such an important topic and one that is not commonly understood by parents and teachers alike, so I want to spend some time discussing it here.

Rising Dopamine Levels

Dopamine is a key component in learning, memory, concentration, mood stability and (of most direct relevance to Tourette’s Syndrome) motor control. It also keeps us motivated and raring to go. Too little dopamine and you can become moody, unfocused, unsettled, depressed, disinterested in life or, in extreme cases, catatonic.

Adolescents face the opposite problem: dopamine levels rise during this time of life. This leads to a low boredom threshold and a keen desire for thrills and instant gratification, not to mention periods of elevated mood and poor impulse control – essentially, a feeling that they can do anything and somehow they’ll get away with it. For some, it can be a dangerous time. Thankfully, for most of us, this feeling eases off in our late teens, as we move into adulthood and develop ‘cognitive control’.

Notably, Tourette’s is all about being unable to control yourself; and studies have shown that Tourette’s typically ‘calms down’ in late adolescence / early adulthood, the implication being that tics are at their worst during adolescence – when hormones are at their most chaotic. But how can someone with an uncontrollable nervous disorder develop that ‘cognitive control’ needed to stay calm and safe? There’s no simple answer, but I would say it comes down to finding healthier ways to channel the tics, or ways to distract yourself from them.

To give a personal example, I’ve always found dance to be a positive release of the nervous energy surging through me much of the time. I also love nothing more than to lose myself in a good book, which takes me away from my immediate surroundings and, after a time, makes me forget about my body…and miraculously I ‘forget to tic’ for a time. This gives my body time to calm down and heal itself, so it isn’t quite as ravaged by the tics when they return later. Similarly, my husband and I have noticed that our 11-year-old son ‘forgets to tic’ when he’s absorbed in a video game or drawing. It gives him a little time of reprieve, so he doesn’t kill his muscles with uncontrollable spasms. Scientists can’t explain why this happens, but it does.

Dopamine, Addiction and Medication

On another note, increased dopamine increases our susceptibility to addiction, which I think may tie in with the repetitive behaviours involved in Tourette’s. The body feels a nagging need for the tic, just as bad for you as any drug. This is also why I think it’s wise to proceed with caution when considering Tourette’s medication. My personal experience was one of my body developing a dependency on the drug; and during such key formative years in my life, I’m certain this played a part in shaping my adult brain. I don’t know exactly who I would be today if I hadn’t spent three years on mind-altering prescriptions. I’m not saying don’t try them – just: proceed with caution.

Dopamine Overload

On the more extreme end of the spectrum, too much dopamine is linked to paranoia, suspicion, aggression, wild mood swings and social withdrawal (symptoms of schizophrenia) – as well as OCD and ADHD. This can be induced with drugs such as amphetamines (historically used to treat ADHD) or very high levels of Selective Serotonin Reuptake Inhibitors (commonly prescribed to treat anxiety and depression), but it can also occur naturally within the brain. For instance, schizophrenia is a genetic condition one can have without any history of medication. There is also a modern argument that bipolar disorder and schizophrenia may actually be the same disorder.

In any event, no two people have the same level of dopamine (or any other bodily chemical, for that matter). Some have more, some have less. In my case, I think I have naturally elevated levels of dopamine, because my experience with antidepressants used to treat my Tourette’s induced symptoms of schizophrenia. I suspect our eldest son may have elevated dopamine, too – and now that he is entering puberty, I can see that dopamine has shot sky high in his body. It manifests in extreme mood swings, where he is the model child one moment and then suddenly he’s screaming, slamming doors, kicking his desk and throwing things, before collapsing into hysterical fits of tears. He also has moments when he is convinced virtually everyone in the world hates him, before finally remembering he’s actually very popular. He has been known to imagine his father is giving him weird looks, and to react accordingly. As you can imagine, it doesn’t make life easy.

How does this relate to Tourette’s? Because Tourette’s, like any health condition, is worsened by stress – and all of this is highly stressful! To give a concrete example, the other day our son had to do some maths homework. He went into it in a bad mood and returned the homework to me covered in scribbles, which he said were caused by tics. I tried to tell him that wasn’t just tics, that was rage, but I didn’t get to speak much before he was screaming at me again. The fact is, I believe it was tics – but it was caused by unnecessary anger launching him into a state of extreme stress. Later on, he understood this and was quite regretful of his behaviour. I tried the maths with him again the following day, when he was in a better mood. Guess what? He finished it in about five minutes, with a positive attitude and perfect handwriting, no scribbles to be seen.

This is tricky because in school, he often marks up his work with scribbles and pen stabs and dots, and some of the teachers don’t believe that it’s tics and therefore unavoidable. I can’t help but notice this only happens in certain classes, where I know our son doesn’t like the teachers. In other classes, where he loves his teachers, his work is strong and easy to read. What does this come down to? How relaxed, focused and engaged he feels in the lessons. The more bored, the less he is able to control the fidgeting (ADHD) and tics. I relate to this. Force me to sit through a long seminar and I end up ripping up all my fingernails because I simply cannot sit still – and I’m not an adolescent anymore. And that’s not just ADHD; some of that is Tourette’s.

Serotonin – the Highs and Lows

Dopamine goes hand in hand with another key neurotransmitter, serotonin, which plays a vital role in mood regulation, emotions, sleep and appetite. Serotonin levels fluctuate dramatically during adolescence. This is especially hard on girls, because serotonin is so closely linked with oestrogen, which rises and falls every month, right through to menopause (a topic for a future article).

Low serotonin levels are linked with eating disorders, loneliness, depression and self-harm – all commonly associated with adolescence, especially girls – as well as insomnia, panic attacks, anxiety, obesity, OCD, digestive problems and pain. In today’s world, such symptoms are usually treated with prescription medications – but in my personal experience, these problems naturally ease off as you move into adulthood. If you believe in evolution, there must be some reason these hormones and neurotransmitters shift in this way, at that period of life; we just aren’t channelling it the right way in modern society. We aren’t nomadic, we no longer settle down with someone at 15 and immediately start having babies, we do not hunt for food, etc. Our stress does not come in the form of threats from another tribe or a dangerous wild animal; it comes from final exams and the fear that we don’t wear the ‘right’ clothes to be considered cool.

And once again, all this stress worsens Tourette’s – not to mention associated conditions. It’s hard to separate labels like Tourette’s, ADHD and OCD at this age (or, maybe, at any age). They seem to bounce off each other until you feel like you’re going to lose your mind. I remember how hard it was, when I was younger, but at 34, it almost feels like it happened to another person and I just inherited her memories. Watching our son go through it is another matter.

I have faith that, as difficult is it is for him now (and as difficult as he is for the school and for us), he will sort of ‘grow out of it’, in time. I’ve had a motto since he was about seven: ‘He’ll be fine when he’s 25.’ People usually laugh when I say that, but I mean it – because I started to feel okay around that age. I never thought it was possible to feel as settled as I do today, but it really did somehow work out in the end – and I know it will for our son, as well.

Closing Thoughts

The point of today’s article is to emphasise that, if you have a teenager/pre-teen with Tourette’s, not only are they dealing with all the ups and downs of adolescence, but they’re dealing with the exacerbated medical symptoms associated with those ‘raging hormones’. That means it’s especially hard for them, right now – but it also means it will get better, for them and for you.

But if your child is not yet 12, like ours, the journey to adulthood can seem a long way off. While you wait, you might try encouraging your child to get plenty of exercise, to lift those serotonin levels, ease the stress with natural endorphins, sleep better, and channel the energy in a healthy way. Stretching is also great for similar reasons: it relaxes the body, allows time for meditation, and it can loosen muscles that have been tensed all day from tics.

Make sure they eat well, partly because they just should, but also because conditions like Tourette’s are influenced by diet. You may also consider giving your child supplements to help them along, especially if, like us, you can’t get them to eat properly at school. Bananas are great for increasing serotonin. I’ve also just today discovered the world of herbs that naturally reduce dopamine levels. I’ve done some personal research and started up a collection of strange sounding herbal remedies from all over the world. If any of it works for our son, I’ll be sure to share that experience, but for now, I encourage you to do your own research and find what works for you.

In our next article, we’ll be talking about how Tourette’s affects self-esteem, especially during adolescence. Please be sure to subscribe to this blog 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 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 Ladder, inspired 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.

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:

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.

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 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 Ladder, inspired 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.

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.

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.

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 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 Ladder, inspired 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.

Editor & Founder of Conditional Publications, Vrinda Pendred, discusses the grief process, from denial to acceptance, and how it relates to Tourette’s Syndrome.

So far in this series on Tourette’s Syndrome, we have discussed:

1. What Tourette’s really is, from an insider perspective.
2. The causes and triggers of Tourette’s.
3. Prescription medication for Tourette’s.
4. The use of anti-depressants in treating Tourette’s.
5. Alternative treatments for Tourette’s.
6. Extreme treatments for Tourette’s.
7. Diet and vitamin regimes used to treat Tourette’s.

If you missed any of the above articles, please click one of the links above to read them.

In each of the previous articles, I have sought to outline the basics – what Tourette’s is, the possible causes, and the seemingly endless ways people have attempted to treat it, in their desperate search for relief.  I have talked about my own search for a ‘cure’, and at the end of the last article (Tourette’s – Diet & Vitamin Regimes), I shared a story about accidentally overdosing on niacin and learning what it’s like not to have Tourette’s Syndrome – with the knowledge that it would be dangerous to repeat the exercise and all my symptoms would return in full force as soon as the niacin wore off.  That was a turning point in my life, because it marked the moment I stopped searching for cures and realised I needed to take a more philosophical approach to my condition.

The Trauma of Tourette’s Syndrome

Around the same time as that niacin episode, I happened to be seeing a psychotherapist for recurring episodes of depression; we met once a month for about a year.  In our final session, after unloading all the old emotional baggage I had been carrying for so long, she looked at me for a while and then said something to the effect of:

‘There’s nothing really wrong with you.  You’re married, you’re a mother, you have a stable job that you enjoy, you have plenty of friends.  You’ve done well for yourself, despite any childhood setbacks.  At this point, I think your biggest problem is the Tourette’s.  It has disabled you from doing so many things, growing up.  It causes you great physical pain and discomfort.  It makes you self-conscious.  And there is nothing you can do to stop or even help it.  I think this depression is post-traumatic stress resulting from your lifelong condition, and you probably just need someone to talk to about what you’re going through, so you don’t fall apart.  Unfortunately, I can’t give that to you forever.  The NHS won’t fund it.  But I think it would help a lot if you started talking more about your Tourette’s with family and friends.’

I was stunned.  I had lived with Tourette’s ever since I could remember.  It was as much a part of me as breathing.  It had never occurred to me that it might have traumatised me.  But the therapist had to be right, because as soon as she suggested talking about my Tourette’s with family and friends, I felt myself physically seize up.  I told the therapist:

• ‘If I talk about it every time it causes me problems, I’ll be talking about it all the time.’
• ‘I’ll just annoy everyone.’
• ‘They’ll find it boring.’
• ‘They’ll get sick of me.’
• ‘No one wants to hear me moan all the time.’
• ‘I’m trying to be positive.’
• ‘I don’t want to scare or upset anyone with the crazy thoughts I’m having.’

Yet as I talked with the therapist, it became clear that I was just making excuses because I’ve always been afraid of being vulnerable with people.  I’ve also always found it difficult to support others when they come to me with certain types of problems, and I think it’s because I find it hard to talk about my own.

The Grief Cycle

That was years ago, and I never saw that (or any other) therapist again.  In her absence, I took her advice and made that leap: I risked talking to the people who really mattered.  Even now, it’s not always easy.  Often I still keep my thoughts and feelings about living with Tourette’s to myself, because I don’t want to moan all the time, and I am trying to be positive.  But when things get really hard and I need to let it out…I do.

And when I learned to do this, I realised that for more than twenty years, I had been caught in the first of the five stages of grief, as outlined in Elisabeth Kübler-Ross’ 1969 book On Death and Dying: denial and isolation.  I had also privately spent a lot of time in stage two: anger.  I had spent years pretending to myself that there was nothing wrong, that I didn’t need help, and that because there was no problem, there was no need to reach out to anyone.  And when something forced me to acknowledge my disability, I railed at nature, at God, at my ancestral genetics – at everything that might have put me in that position.  Neither state of mind did me any good.  Rage, just like repression, only makes you feel sick inside and causes greater stress – worsening the problem.

This inevitably led to stage three: bargaining.  I would think things like:

• If only I could just finish this one tic and then never have to do it again, or
• If only this one tic would go away, then I could deal with all the others.

This was nonsense, because that one tic would eventually fade (remember, tics ‘wax and wane’), but whatever tic replaced it would be just as awful, and I’d find myself making the same bargain.  Sometimes that bargain would be worded as a prayer.  When this prayer went unanswered, I would fall into depression – stage four in the grief cycle.  I felt empty and helpless; and as I stared into the future and considered the fate that awaited me – the reality of this condition continuing until my death and potentially causing real crippling damage as I grew older and frailer – I confess I often wanted to die.

Remember there are five stages in the grief process; but I cycled through these first four time and time again, throughout my formative years.  The difficulty was that no one had died; there was no one-off event from which it would simply take time to move on.  The trigger of my grief was always happening, and would keep happening for the rest of my life.  Similarly, you can’t really call it post-traumatic stress if the source of trauma is still present.  So, the question is: in such circumstances, how on earth do you heal and move on to the final stage of the grief process – acceptance?

The answer for me was: through surrender.

Getting Off the Emotional Roller Coaster

In 1838, Edgar Allan Poe wrote a ghost story called Ligeia, inspired by the gradual death of his wife – so gradual that he couldn’t stand it.  He told people that as much as he wished he could keep her alive, he just wanted it over because he couldn’t stand being on that emotional roller coaster anymore, repeatedly getting his hopes up, thinking she might survive, only to be disappointed again.  To give a more modern example, think of the 2017 film A Monster Calls and the book from which it was adapted.

Ligeia resonated strongly with me, when I first read it, because I had been on that emotional roller coaster all my life.  As much as I hoped for a cure for my condition, I had come to realise that for me, at least, there wasn’t one.  The endless treatments I had tried were just keeping me strapped into that roller coaster chair.  So, it stood to reason that if I wanted to get off, I needed to quit the treatments.  In other words, I had to give up searching for a cure and surrender to my situation.

Sometimes when I talk to people about this, it upsets them, or they accuse me of being pessimistic.  Usually, these people are either caught in the first four stages of grief cycle themselves (either as parents or as Tourettics themselves), or they have no experience with Tourette’s and don’t know what I’ve been through.  And that’s okay.  If someone had told the fifteen-year-old me that I needed to give up searching for a cure, if I wanted to feel better, I would have been upset too.  But at thirty-four, I can say that surrendering to my fate was what finally got me to that final stage: acceptance.

How did I get there?  Ironically, it was mostly down to my traumatic experience with medication.  As I described in a previous article, long-term use of sertraline led to a negative feedback loop in my brain.  Every time my doctor increased my dosage, my brain would compensate by adjusting my natural levels of dopamine and serotonin.  The doctor’s solution was to keep increasing that dosage.  After more than two years, my solution was to quit the drugs.  Looking back on that experience, I found myself reflecting that maybe that was my brain’s way of saying, ‘I don’t want this.  You’re fine the way you are.’

I was also struck by how much taking those medications changed my personality.  They flattened me, deadened my spirit, sucked away my interest in life, drained me of my passions, and destroyed all my creativity.  In fact, there’s much evidence to suggest high levels of intelligence and creativity often accompany a diagnosis of Tourette’s – so to cure it might mean to lose all those wonderful ‘side effects’ of the condition.

I concluded that it didn’t matter whether the drugs helped the tics or not – because I was no longer me.  And despite far too many phases of insecurity and self-loathing as I battled through these experiences, I came away from the medication with a huge sense of relief to have found my way back to me again.  There was a time when I was genuinely frightened the drugs might have changed me forever.  When I felt like myself again, I suddenly appreciated who that person was.  For the first time in my life, I wanted to develop a deep loving relationship with that person – tics and all.

Acceptance

Reaching that crucial fifth stage in the grief cycle didn’t happen overnight; it took many years.  But the more I learned to talk about what I was going through, the more I came to accept that this is who I am.  I have Tourette’s.  I jerk my muscles and my head, and strain my eyes, and make silly noises, and all the rest.  I can’t help it, so why should I be ashamed?  Why should I hide it or pretend it’s not there?  If someone has a problem with it, it really says much more about them than me.

I knew I’d finally achieved true acceptance one day when I was at work, uncontrollably chirping at my desk, and a colleague asked what that sound was.  Even just a year earlier, I would have made up some excuse or tried to convince that colleague he was hearing things.  But that day, I said, ‘Oh, that’s actually me.  I have Tourette’s.  I can’t stop chirping.  Silly, I know.’  And you know what my colleague did?  He grinned, and then laughed – not at me, but with me.  I joined in, and it felt so good to laugh about it.

Since then, I’ve made a point of telling everyone I have Tourette’s, if it’s relevant to the situation / conversation.  Every time, I feel a weight lift higher and higher off my shoulders.  But perhaps more incredibly, I experience the beauty of the people around me accepting my Tourette’s, too.

Don’t get me wrong.  Sometimes I still double backwards and return to some of the earlier stages in the grief cycle.  But it doesn’t happen often, and I find my way back to that final stage soon enough.  Because fighting it won’t change things.  This is who I am.  I have Tourette’s, and that is never going to change.  And maybe that’s okay.

Is This Approach for Everyone?

My eleven-year-old son only received his diagnosis earlier this year.  He’s just at the beginning of the grief cycle; and I suppose, in a way, it’s started a new cycle for me.  I’ve accepted my own condition, but I haven’t yet accepted what I’ve passed on to my beautiful little boy.

A few times, he’s asked me, ‘Will it always be this awful?’  And I’ve had to tell him honestly that it might get better.  He might even grow out of it.  But it might get worse.  Alternatively, maybe he’ll learn to integrate it into his life so thoroughly that he’ll hardly notice it anymore – like I have.

He once asked, ‘Do you think there will ever be a cure?’  I said, ‘If there were, I wouldn’t take it.’  He was understandably confused, so I explained that the chemicals involved in Tourette’s Syndrome are also tied up with so many other things, like creativity and dreams and emotions, that to remove the tics would be to change who we are.

He then asked, ‘So if there’s no cure, and there’s no good way to treat it…how do you deal with it?’  I said, ‘That’s a very personal thing.  But for me, I felt better when I finally accepted my Tourette’s.’

He said, ‘But I already accept mine.  I know I have it.  That doesn’t make me feel better.’  I smiled and told him, ‘That’s not real acceptance; that’s acknowledgment.’  The fact is: as long as you continue to fight your own body, you’re going to hurt for it.  And we all know that any attempts to suppress tics only make them worse.  But I can’t force my child to give up that fight.  He has to find his own way – and it won’t necessarily match my own.

Nor will yours!  Nonetheless, I think acceptance is a key part of any Tourette’s ‘recovery’ plan.  Even if you find physical relief from medications or diet and vitamin regimes, or exercise, or meditation, or whatever – you’re still devoting energy to attempting to tame a wild beast bursting out from within.  You’re still dealing with a very real and very painful physical condition, not to speak of all the social problems it might cause.  And just as my old therapist said, that is bound to be traumatic to some degree.

So, treating Tourette’s is not just about reducing tics.  You have to heal your heart, too.  And in doing so, I guarantee a weight will lift away, allowing you to breathe again; and that in itself will help ease the tics, just by easing the stress.

Closing Thoughts

I hope you found this article helpful, or at least informative.  Please remember I am not trying to push my views on anyone, or advocate for or against any kind of treatment.  I am simply sharing my personal experiences in living 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 looking at how to help our children with Tourette’s, as they embark upon their own journey through the grief cycle – made more difficult still by bullying, teachers who just don’t (or refuse to) understand, and raging hormones making tics worse.  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 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 Ladder, inspired 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.