We received a lovely email by a young girl called Lucy at the start of this year. She explained what life is like living with Tourette Syndrome and the experiences she has dealt with on a day-to-day basis in the education system. Lucy wants to raise awareness with her book ‘I Can’t Make It Stop’ through a variety of platforms including supply agencies, community halls, etc. We were more than happy to help her with this by inviting her and her family into our office to discuss further ways in which we can raise awareness. Here are just a few of the topics we discussed.
What age were you when you were diagnosed with Tourette Syndrome?
I was 9 years old in 2020, when I started coughing and the doctors thought it might have been croup. It didn’t help that this was the start of Covid, so I wasn’t allowed to go to school in case it was Covid. Alongside the coughing I started making a whistling sound which quickly progressed in to twitching. After several appointments with my doctors and other specialists they soon confirmed that I had Tourette Syndrome. Although, there was support from my GP there was no specialist support for children in Wales and it’s been really difficult in finding the right therapy to help me.
What inspired you to write your book at such a young age?
There were no books that I could read about Tourette Syndrome.My mum researched it but I didn’t understand any of it. I decided to write my own diary which led me to creating this book to raise awareness for other children that are going through the same thing.
What has been your personal experience having support in school and what’s been the most supportive resources the school have provided?
Unfortunately, I haven’t had much of a positive experience with my schools in supporting me until recently. After meetings with the school and my parents, we now have a personal profile pack to give to supply teachers and staff which includes a business card with information on how to help me.
The school have also designated five trusted members of staff that I can go to at any time during my school day for extra support. I really like my French and English teacher because I feel like they understand me.
How can teachers and TA’s support you and others in a school setting?
By reading through the profile pack provided to them and raising more awareness and understanding to other staff members in education.
Have you received any support outside of school?
Yes! Tourettes Action has been a huge help for me and my family. They liaise with my mamand they sometimes contact my school to implement new resources and provide support.
The reviews on Amazon have been excellent – how has your experience been writing your book?
Very good! I have felt supported, and I’ve even had book signings and met other children with Tourette Syndrome which has made feel thatI’m not the only one with it.
After meeting Lucy today, we’ve learnt so much about Tourette Syndrome andwhere to look for further guidance in understanding more about this neurological condition. It affects 1 in 100 children and it is not a rare condition. In Wales alone there is only one specialist so as you can imagine this can be quite frustrating for families in looking for answers and additional support.
Lucy has blown us away today her charming smile and confident attitude. We were impressed to hear that Lucy would like to be a doctor when she’s older. We learnt that Lucy loves art,and you can appreciate seeing her own illustrations throughout her book. Lucy was also a finalist at the National Diversity Awards in Liverpool last year, what an achievement at such a young age!
Education Supply Pool have made a personal pledge to Lucy in raising awareness of Tourette Syndrome. On the Tourettes Action website you will find a free CPD training course about Tourette Syndrome which you’ll receive a certificate for. Here is the link - Tourettes Action eLearning Module (tourettes-action.org.uk)
We would also like to add the link for Lucy’s book which you can purchase on Amazon. Please take the time to read the lovely reviews - I Can't Make It Stop: My Diary On Living With Tourette Syndrome: Amazon.co.uk: Phillips, Lucy Marie, Thomas, Clare: 9798807602022: Books
We wish Lucy the best of luck next week, on St. David’s Day, as she will be meeting with the Minister of Education and two local councillors at the Senedd Cymru.You’re an inspiration Lucy!