L's TS story

Posted Mon 2nd Sep 2019 at 06:00
by Caroline

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This blog is an insightful account of the complexities that young people with TS and co-occurring conditions, and their families deal with on a daily basis

L. was diagnosed with TS when he was 5 at his first appointment with the child development clinic (CDC) in Hastings. We had initially asked for a referral as he had had panic attacks over the summer prior to starting school and he struggled with many things, sensory-wise, sleep-wise and with friendships and social rules and more. He was highly sensitive, anxious and not happy in himself. He struggled to settle down and was constantly on the go. He was impulsive and intense. He was also extremely bright and taught himself how to read with a Peppa Pig phonics game at 2 years old.

We had noticed a few tics but nothing major. We had not realised that his snorting and clearing his throat were vocal tics and the paediatrician picked up on these straight away. It was a bit of a shock, in particular when he then said that TS was likely to come with other conditions too.

When we got home, we starting to read more about Tourettes and it all started to make sense. We had been reading for years about different conditions, from sensory processing disorder to ASD, ADHD, anxiety, depression and others. Suddenly, it looked possible that we were not mad in thinking that he might have a number of those.

This felt like an internal implosion. I cried a lot, why was it that my son would have to face so many more struggles. I had a strong feeling of unfairness, I was angry.

In reception class, his teacher managed to deal with L. well, she was a very experienced teacher and she had an autistic son herself. She could see through his behaviour and managed to see the positives in him. She called him her little Einstein as he has always had an incredible memory and thirst for knowledge. He knows more than I ever thought a little boy might do.

Once in year 1, things became harder. He was in a small rural school with little consideration for special needs and the feedback started to become more negative. They were not looking at his needs but only complained about his behaviour, without looking at the reasons behind them. We asked for a number of accommodations such as ear defenders (the class was very noisy which was difficult for him) and a small corner for him to retrieve to when he needed to. After a number of attempts and realising that nothing was happening (and after them complaining that he always had his hand up!), we decided to move him to another school. This time, the school was bigger and renown locally for having a great SEN team. Indeed, within a month, all our demands had been met and more attempts were made to support him. He had been asked to join a nurture group and later a friendship skills group. They had given him ear defenders. The class teacher mentioned that hadn’t she read about his SEN, she would not have noticed it, for he had integrated his class so well.

That year, he also had an ADOS test, and came in slightly positive. The test they had chosen was for older children due to his great language skills, but that made us doubt the results.

In Year 2, somehow his Tourettes seemed to develop with many more tics and this started to become a problem. He could not go through a whole times table without stopping for stretching his mouth and losing count. By then, we joined a number of online forums about Tourettes and heard about Magnesium supplements. Our local herbalist advised a natural version (Floradix) and dosage ok for 7-year-old children. We saw a decrease nearly immediately, with only about 10-20% of his tics left.

L. had never been bothered about having tics but he mentioned a few times that children in his class were asking him why he ticced. I suggested that the teacher did a presentation on Tourette to the class, which he seemed happy about. I put together a PowerPoint and the teacher showed it to his class.  Actually that day, a little girl in his class went home and told her mum that she felt she had Tourettes herself after seeing that presentation, and she has since been diagnosed with TS.

Towards the end of year 2, and with the recommendation of his paediatrician at the child development clinic, L. took part in a cognitive abilities assessment with an educational psychologist. The results were not surprising to us, he had the maximum score for 3 out of 7 competences, classing him as exceptionally gifted. The paediatrician and us together decided not to give him an official diagnosis of ASD as she mentioned he was a very complex child and one that was difficult to understand fully.

Towards the end of year 2, although Tourette’s had improved, other conditions became more prominent, with L. struggling to control his emotions and being anxious, not sleeping well as well as not coping with sensory processing (sound, sand, wind).

He was offered a 6-week programme with an OT giving him and us the language to discuss how to control his emotions. We also got him a heavy blanket to help him settle in the evening.

Over the years, the school has always tried to help him: he joined five or six support groups (nurture, friendship, controlling emotions etc.), sensory gym at the start of the day. They are ever so supportive and send him a very positive image of himself.

The last year has not been easy for him. Last September, L. fell very ill and was hospitalised on our way back from Asia. He had contracted a bacteria and his organs were starting to shut one at a time. L. realised later on that he had nearly not made it through and has been showing signs of trauma since. He had a couple of full on panic attacks about death and dying. We contacted our GP and were referred to CAMHS. We have just received the confirmation that he has been accepted for psychotherapy.

In L.’s case, tics have not been the most challenging. He is very accepting of his Tourettes and does not feel any shame. He happily tics away in class, at school, in public. We have been (and still are) struggling more with other associated conditions, i.e. some of his ASD / PDA traits, his sensory processing difficulties, his impulsivity, his anxiety and lack of sleep.

But we have come a long way as a family and having been diagnosed with a number of conditions has helped us on our way to acceptance. L. is now at the centre of our worries and we do not feel any more anger or unfairness, we just get on with it! We just want to make sure that he is as happy as he can be and that he loves himself as much as we love him. We are very open in our family and we believe raising his awareness helps him better understand himself and accept himself and find strategies to cope with his struggles.

We are quite worried about his mental health and happy to see that our CAMHS keyworker is supportive. She said that his worries are the worries of a 13-14 year old when he is only 9, due to his great intelligence. But at the same time, he has not developed the tools to deal with such worries. She is advising that we try different interventions, starting with the psychotherapy soon.

Although some people might struggle to understand his behaviour at times, our family and friends do and they love him for who he is, an amazingly warm, cuddly, witty, charming, clever and kind little boy. Sometimes, when in the middle of a challenging period, it is hard to hang on to that, or to see it even. But every little change we make that can help him feels like a victory.

Today in gymnastics, he struggled with a child mocking him while he clearly felt scared by the idea of trying a cartwheel on a beam. He cried, but then he got up and tried again. We talked about it on the way home, how wonderful it was to see his resilience and determination. He is not giving up and having had to face those extra struggles earlier on in his life has given him an incredible strength. I feel it is very well deserved!

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