Understanding Tourette Syndrome: A Mother's Perspective

Hot on the heels of the ASD diagnosis, Jamie was diagnosed with Tourette Syndrome a couple of days before Christmas 2022. Today is Tourette’s Awareness day so it seems an appropriate time to share our experience of life with Tourette’s, a neurological condition thought to affect 1 in 100 people. I say “our’,  but in truth I can only really share my experience as the mum of a child with Tourette’s. This is Jamie’s story more than mine and I can only share what he is comfortable with. I also couldn’t and wouldn’t even attempt to describe how it must feel to actually have Tourette Syndrome. 

I remember contacting our health visitor when we noticed the first vocal tics at just two years old. Over the years they continually evolved but every time we spoke to his teachers they reported witnessing none in school. We now understand that he was suppressing his tics during the school day and only releasing them once he escaped school. However, Jamie’s tics really started impacting his life in early 2022 during his final months at primary school. We now know that this is a common age for tics to become more prominent. I recall asking him if one particular tic (a violent and repetitive head jerk) was hurting him and he explained that it hurt more to suppress it. As we witnessed the rapid increase in frequency and severity of both motor and vocal tics my biggest fear, based on TV documentaries, was that he would develop coprolalia (“the swearing tic”). Jamie is a stickler for rules, he has always lived in fear of getting into trouble and has never uttered a sweary word. I was so worried about how he would cope with this affliction. However, it turns out that coprolalia only affects around 1 in 10 Tourette’s sufferers and it’s not something that has occurred for Jamie. 

Tourette’s is an inconsistent and fluctuating condition. Jamie can have spells where his tics are all consuming to the point of debilitating, causing pain and injuries, but then have some days where we hardly notice them. Tics can also be transient so just as we get used to one, it settles down and is replaced with another. Tiredness and stress play a part and given that tics are contributing factors to tiredness and stress, that can be a vicious circle. Prior to educating myself post diagnosis my understanding of Tourette’s had come from TV documentaries which mostly portrayed people swearing and saying offensive things in the street. It was shocking and upsetting, I guess that’s what a lot of documentaries are striving to be. What these documentaries didn’t share was the sheer exhaustion, physical and mental, of being subjected to tics. 

Having watched these documentaries, I was unaware of the coexisting conditions which often come hand in hand with the condition. In our case they include autism, severe anxiety, disrupted sleep and traits of obsessive compulsive disorder. A hell of a lot for a 12 year old boy to contend with. And a lot for us as parents to get our heads round. The iceberg illustration with only the tics showing above surface level was hard hitting and certainly rang true for us. 

I’ll be forever thankful to Tourette Scotland for the education and support they provided.  We were living in crisis mode when I turned to them and it was such a huge relief to find people with lived experience of Tourette's. Taking part in their General Awareness training session felt like being swept up by a lifeboat in stormy seas. Everything they were describing resonated with me, everything the trainer described made me want to shout, “Yes! That’s what Jamie does and now I understand why!”. 

Following the training session I committed to learning all I could about Tourette’s. That was helpful and empowering but where I felt the real challenge lay was in making other people understand. It was so important to me that everyone who has the honour of spending time with Jamie should understand what he is experiencing. I wanted his teachers to understand the pain of trying to suppress tics while he was in school and to know that an hour of this was so exhausting he would have to go home and sleep. In partnership with Jamie, James and myself, a Tourette Scotland advisor produced a Personal Profile which would do just that - it clearly explains what Jamie’s strengths are, what he finds difficult and what can be done to support him. We are able to share this document with school and with anyone else Jamie wishes to share it with. Tourette Scotland also offered to attend meetings and train school staff. 

“Grateful” doesn’t even begin to cover how we feel about these people. The support we have received from Tourette Scotland is the kind of support that I would wish for anyone who is experiencing a challenging time. To have someone say, “I’ve experienced that too” and explain to us how tics can impact on life as well as how they can be managed was what we desperately needed at that time.  While we’re grateful to all the professionals who have supported us over the years on this journey, these Tourette Scotland volunteers were the first people who had actually lived through what we were facing as a family. That is invaluable. They weren’t horrified when we told them that Jamie was only managing half an hour in school or that sometimes he didn’t sleep at all. They’d seen it all before. Tourette Scotland hosts monthly online groups for parents and hearing other families’ experiences was so helpful. Through these sessions I have heard of the uphill battles some have fought to get a diagnosis and I’m grateful that this was not the case for us. Earlier this year I listened to the training session again while it was being delivered to James and his colleagues. Once again, I was overwhelmed by the feeling that everyone who knows Jamie should take part in this session and gain the insight I now have. 

Sharing this post is one small way to try to explain to people the impact on our family but also to highlight the fact that this amazing charity is available and invaluable for anyone who may come into contact with a person with Tourette’s. It’s not a condition I would imagine anyone would choose for their child. However, Jamie himself has told me if he had a choice he would choose not to have it but he’s accepted that he does have it, it’s part of who he is and he’s OK with that. 

Since his diagnosis we have heard about heart surgeons, musicians and artists who have Tourette’s and lead fulfilling and successful lives. I have no doubt that whatever hurdles he has to jump, our boy is going to do something brilliant with his life. At the age of 13 he is already identifying activities which can give temporary relief from tics such as photography, reading and playing the piano: all of which require concentration and focus. Having a sense of humour is a big help (now that we’re more accustomed to the tics) and as a family we can sometimes joke about them. 

As I mentioned, this story belongs to Jamie (he has given this post the all clear!) so this is very much a brief depiction of Tourette’s in our house. Maybe one day Jamie will want to share more of his story but in the meantime I make no apologies for shouting about how proud I am of him, sporting my Teal for Tourette’s shoelaces and shouting about what an amazing charity Tourette Scotland is! If you’d like to read more about Tourette Syndrome and the support available check out https://www.tourettescotland.org/ and https://www.tourettes-action.org.uk/ .

#tourettes #tourettesawareness #tourettesawarenessday #tourettescotland #tourettesaction

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