How having a child with Tourette Syndrome influenced my journey and career path to becoming a CBiT therapist.

Posted Wed 21st Oct 2020 at 14:11
by Sarah Sharp

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I’d like to start by taking you back a fair few years, I was mum to my first 3 children and worked full time with children who had additional needs, as a registered behavioural therapist.

I knew very early on that there was something ‘different’ about Harrison. He struggled from as young as 2 with change of routine and transitioning, and this resulted in rage episodes almost every time. As he got older, we knew without fail that he would quite literally explode by the time we had got to the car on school pickup and, to be honest, at that time of our lives, I dreaded most days as we didn’t know what to do to help him. He presented with many traits of ASD, so I implemented strategies as best I could to support him, but it was hard.

We had the usual hurdles with school “we haven’t seen these behaviours”, “he just saves his behaviour for you”, “he may have attachment issues because of your past PND” and so on.

Eventually, the SENCO agreed to do a referral to CAMHS, however she made it clear in her referral that they do not see anything and she is sure it is my fault due to attachment issues. (Yes, a huge complaint landed on her desk the next day!)

Fast forward another year of fighting the system and Harrison was diagnosed with Tourette Syndrome, ADHD, anxiety and sensory processing disorder with traits of autism. What a mouthful hey?! The Tourette’s diagnosis was a really hard pill to swallow, I felt grief, I felt alone, I felt very out of my comfort zone, but we finally had some answers and could start to access support for him, or so we thought!

Turns out, support for Tourette’s is really hard to come by. I started educating myself fully about tics and what was and wasn’t available in our area and I quickly learned that ‘anything’ that was Tourette’s focussed (apart from the local Facebook group ‘Tourette’s Sussex’) was essentially none existent.

However, we were very fortunate to eventually get referred to the TANDeM Clinic at St Thomas’s hospital in London.  This was the closest hospital that could help with tics and where he was able to access medication for his ADHD, anxiety and behavioural therapy for tics - this therapy was life changing for him and us as a family. Harrison had access to psychoeducation to build his self esteem, and they used behavioural therapy to teach him skills to help with managing his tics if he desired.

As I said this therapy was life changing for him, he felt empowered and we started to see great changes.

Despite the therapy being so beneficial to us as a family, it was a huge commitment. Weekly train travel from Brighton to London was not only expensive and time consuming but resulted in a full day off school and work, plus I had to sort childcare for my other children too.

This lonely journey inspired me to extend my training with a focus on Tourette syndrome.

Since then, I’ve made it my mission to help families with Tourette syndrome.

I started co-running the local support group Tourettes Sussex with the amazing Lucy Toghill from Tourettes Action where we ran workshops for parents to learn about Tourette’s and to know they are not alone.

I trained in Comprehensive Behavioural Intervention for Tics (CBiT) with Tourettes Action and set up my own company where I offer behavioural therapy for tics along side a variety of other services to support the whole family.

Despite originally wanting to help my local area, which I do, I now also work with families worldwide (remotely) as services are lacking everywhere, not just in my local area.

CBiT is recommended as the first line intervention for tics by the American Academy of Neurology before medication and I love nothing more then helping individuals learn these techniques to manage their tics. These techniques are used to reduce the frequency and severity of tics.

Alongside CBIT, I offer support and interventions to the whole family, in hope that they feel they have a place to turn when they need it. My aim is to support and educate families or individuals, so they feel empowered enough to advocate for themselves and live their best lives possible.

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