At the start of lockdown I was sent a short story about the experience of growing up with a parent with Tourettes by a young writer called Yaska Sahara. I found the piece incredibly moving and it was a perspective that I hadn’t encountered before so I reached out to Yaska asking if she’d be up for writing a guest post about her family’s experiences. I’m excited to say that she was and that this beautiful and thoughtful post is the result.

 

I don’t have Tourettes Syndrome and yet here I am on the Touretteshero website. My Mama has Tourettes Syndrome.

So what do I remember about being raised by a mother with Tourettes Syndrome? How did I feel? And did I even know?

The voice of children whose parents have Tourettes has not really been heard, so I’m going to tell our side of the story.

My mother is a strong British-Kenyan-Indian career woman of 51 who has raised two children. My brother and I are 22 and 20 respectively. Having a mother with Tourettes Syndrome means I’ve grown up with it my whole life and have an intimate familiarity with it, despite not having it myself. My brother and I don’t bat an eyelid at our mother’s growling (yes, she growls like a wolf) or her Maasai high jumps.

It’s just normal.

However, despite my literal lifetime of experience, it’s taken me quite some time to collect my thoughts and write this post. This is because my familiarity with the situation means that I don’t actively consider it or think about what she and those with Tourettes Syndrome go through.

When I was a child, I didn’t realise my mother made odd sounds and movements. They weren’t odd. They were just Mama being Mama. Mama still fed us, played with us, answered our annoying childish questions and told us bedtime stories. Then it was pointed out to me that the sounds she made were ‘weird’ or ‘different’. My attitude was “Ok, so she’s weird, but she’s my unique and strong mum”.

I remember I was around 8 years old when I learned Mama had Tourettes Syndrome. I don’t really remember how it was discussed, or the first time it was mentioned explicitly. But there was always a reassurance that Mama was still the same Mama. So I never really gave it too much thought until I got older. From when I was around 11 years old, Mama talked about it with us so that we could explain it to other people. Then in our early teens, she told us about the challenges she experienced as a result of her Tourettes. It was hard not to worry at times, and it still is, but I saw that Mama was still Mama despite hardships and that she was very resilient. All my brother and I could do was be there for her wherever possible.

Childhood-me had no idea my mother had been beaten for being ‘disruptive’ with her tics and that her throat growl tic was not natural but trained over many years to avoid inappropriate verbal tics. I stared at her without words when she told me she was hit by a priest to be exorcised, how people made fun of her, how her knees and joints were in constant pain, how she had actively hidden from us some of the effects on her health that Tourettes Syndrome had, so as not to upset us. I only learnt recently how it’s impacted her long-term mental health.

With Mama’s Tourettes being part of my whole life, it’s difficult to know what to focus on, but I’ve decided to talk about intellectual versus instinctive knowledge of Tourettes, and about some particularly poignant memories. Spreading awareness on a personal and wider level will give a view of what it’s like to be raised by a parent with Tourettes, and how in some measure it’s been an advantage and privilege.

Up until recently, I knew very little about Tourettes, its background, or its community. But I could always recognise it and I was never surprised by it, even when I witnessed tics in people completely different from my Mama’s. Her tics are part of my relationship with her – one could almost say I have a relationship with all the tics she’s ever had, has now, and ever will have. I can sometimes predict certain tics and, without thinking, help lessen their damage. I know where to massage or where not to put pressure because I see the parts of her body that are about to fly off into a tic, or ones that look like they’re causing pain or are being strained by some tic or another.

I’ve been told by people with Tourettes that they understand what I mean, that family members who have grown up around particular tics become completely familiar with them. There’s a high level of subconscious awareness, and it gives the person with Tourettes a lot of comfort. Conversely, my brother and I are fortunate to have this intrinsic knowledge and can apply it to other areas of our lives.

I have many experiences and memories to talk about, but here are a few that give an insight into what someone of my mother’s age and background will have faced and how a child may have adjusted to them.

One constant experience is trying to be careful around Mama and loud music. Contrary to many other people with Tourettes, music makes her tics worse. The tics set her off on a rhythm that turns her into a puppeteer’s doll, with the music being the puppeteer. As a child, I wasn’t quite aware of this but as my brother and I grew older we noticed it, so we started wearing headphones. “It is a remarkably quiet home for teenagers,” remarked people who visited. We fairly quickly and easily developed an intuition for these things. For example, I can tell if the music in a restaurant is too loud as soon as we walk in and can notice if it’s bothering others too. I often ask staff to turn it down because Mama doesn’t like to trouble the staff herself. It can be tiring for her having the same conversation over and over, explaining Tourettes, explaining that music worsens it for her, having to control her tone to ensure she’s polite even if she’s overcome with tics and frustration. So I try to do it for her. She will smile and nod gratefully. She notices.

I have many beautiful memories of Mama making light of her tics in a beautiful way. She sometimes has a tic where she jumps slightly and we call it her jumping tic and we would dance with her, and she would laugh. The same goes for dancing tics! She’s not a good dancer but she’s a great ticcer! She has a throat tic that can sound like growling, as I’ve mentioned before, and we would joke that she’s a protective Mama bear or a powerful dragon. I very much admire Mama’s ability to laugh through her pain like that. Humour is often a good coping mechanism and she seems to have found a balance between being serious about her mental and physical health, but also not letting it get her down constantly.

I remember one day my mother came into school to talk at an assembly about having Tourettes. She explained what is known about it and how it affects her life. I was sad to hear someone joke about Tourettes a mere two days later, saying that it was what someone had because they made a funny movement. This was when I learned that unfortunately, one information session, while it may spread awareness, simply isn’t enough to create proper understanding and empathy. It wasn’t intended maliciously, but it still hurt me. Empathy for other’s perspectives should to be built into how we are raised and educated.

One of my clearest memories regarding Mama’s experiences was a conversation we had about how her Tourettes had been handled in the past. We were travelling through our ancestral homeland and had stopped at a temple my mother rather liked. We stood in the middle, where people would normally pray, but at that time of the day it was empty. There were a few people in the temple courtyard. I was observing everything and Mama said, “You know what, I was exorcised here.” I wasn’t sure if it was a joke as it was so far from what I expected to hear! An exorcism, really?! She went on to explain how some aunts had taken her there to get the ‘spirit possessing her’ out. A priest hit her lightly to get it out. And my small but strong young mother whacked him right back. She told me. “They were so excited, thinking that my hitting him meant that the spirit was coming out, acting through me.” She then laughed, “But of course if someone is going to hit you, you are likely to hit back in instinct to stop more of an onslaught. There was no ghost, it was my Tourettes”. We then went back to where we were staying and had a nice dinner of homemade Kutchi food. And that was that. She spoke about it as if it were a dark comedy, matter of fact, sad, yet hilarious as only my Mama can!

This was when I really noticed her incredible ability to add perspective and laugh at her difficulties. She explained that the whole thing seemed preposterous and that the idea was funny when she thought about it. She also added that these relatives really thought they were helping. It’s incredible to think how far we’ve come and how drastically the world and our experiences of neurodiversity have changed within half a lifetime. On the other hand, Mama works in education, amongst many other things, and says there’s still a long way to go. “Even psychologists and doctors don’t quite understand,’’ she says.

Another incident I remember clearly was my mother accidentally injuring herself while I was away at school. I wrote a story about it and also used it as a starting scene for a novel in which a protagonist has Tourettes Syndrome. So even though my mother is more than her Tourettes, it inspires me in so many ways. And oh, does she have a sense of humour! And it’s one which my brother and I have built upon.

I remember many humorous situations with her. We were crossing over the bridge at the Embankment in London when she ticced a funny jumpy sideways kick, almost like Charlie Chaplin. A young boy of about 7 stopped and stared at her. When she was back on balance and still again, she waved and winked at this boy with such a friendly demeanour, that he waved back, smiled and went on to chat to his dad about what he’d just seen. These small exchanges are so common with Mama. She communicates with people subtly to dissipate both her own discomfort and theirs. I’ve found these events so interesting and I realise that I too have developed this ability to quietly communicate with strangers, albeit in different situations.

Growing up with my mother means I can often spot not only Tourettes, but other neurodiversity in people around me. My mother’s Tourettes has made me more empathic, partially through being around her but also because she made a conscious effort to teach us, sometimes through her own experience, that mental and physical disabilities aren’t always visible.

She showed us that it’s important to notice even slight indications and to act correctly, not to draw attention to them but to show understanding through acts of kindness. Small things, such as holding doors open, providing the comfier chair, explaining on their behalf if they have obviously had enough, so they don’t need to explain themselves, and so much more. My brother and I often connected with children on the Autism spectrum more easily than others. In fact, my brother has such a kind and gentle approach that people, and indeed animals, are easily attracted to him. Because Mama had always felt left out as a child, she deliberately taught us not to leave people out and to be more mindful. This has helped us immensely in communication and frankly in so many other facets in our life.

Another way in which we benefited from Tourettes is Mama’s quick and open demeanour. Some would say we talk too frankly but it serves us well. Mama calls it her Tourettes tongue and those of you with the syndrome will know exactly what she means! Luckily, our dad has a candid and open communication style too, so it works. We say things others just would not, too embarrassing or frank.

There are still times, though, that I feel helpless and see Mama feeling despair too. I’m at University in the Netherlands and once when Mama was visiting me, a lady at the supermarket was visibly angry at her for ‘coughing’ on bread, when she was actually ticcing. Mama was lost for words as the lady had spoken in Dutch and I, not being quite fluent in it, was tongue-tied. Mama was visibly upset, and we soon left the store. I always vow to educate people but don’t always manage, and occasionally it gets exhausting to have to explain that she’s my mum and just happens to tic. A definitive part but not all of her.

Disabled people do have children and we generally don’t even realise that our experience is different from those of others. Tourettes has caused many adversities in Mama’s life but for my brother and me, it’s mostly been a gain. To all the parents with Tourettes out there, you’re all heroes to me. For those of you who have parents with Tourettes and may want to look for creative ways to deal with the reactions of others, my brother and I are happy to chat. So are many others in the Tourettes community.

Neither I nor my brother have Tourettes Syndrome. Research shows that there’s a genetic component to it, but nobody quite knows what’s what. It’s complex and there’s still has much to discover. But the main take away is that people with Tourettes Syndrome not only survive, but thrive and children like us gain immeasurably from the unique ways in which their brains work.

 

Reading Yaska’s post I found myself nodding vigorously in agreement several times. I particularly recognised the incredible feeling of intimacy and love when a family member has a deep understanding of your tics and body.

If you’re a family member of someone with Tourettes looking for more information then check out our FAQ page or get in touch.

Yaska’s post left me feeling hopeful and proud, so thank you to Yaska and her family for sharing their experience so openly.