I Don't Have Tourettes!

Posted Thu 13th Jul 2017 at 12:00
by Rachel Miles

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Rachel Miles, mum to 8 year old Shae, tells us how TicFest South was a life-changing weekend for her family.

I DON'T HAVE TOURETTES!

My son, Shae, is 8 years old and has been diagnosed with Tourette Syndrome since the age of 6. He also has severe anxiety, OCD and Epilepsy. He has always struggled to interact with other kids and has a total lack of self-confidence when it comes to socialising with peers. We take him to every Tourettes Action gathering and he stands with us, refuses to join in, and has complete emotional and aggressive meltdowns each time!

So why do I take him? I take him in the hope that it won't always be like this for him, I take him in the hope of normalising TS for him and in the hope of him finding acceptance. He would tell everyone that he didn't have Tourettes and even told one of the TS staff at one event "Why am I here, I don't have Tourettes".

We then get an email about an upcoming event called 'TicFest' in the South East and without a blink of an eye I put our names forward for it. Then an utter dread washed over me.....a whole weekend of interaction! Shae wouldn't cope, it would be horrendous. But, as parents, we decided we had to try it! When we told Shae about the event we knew what was coming - the mother of all meltdowns!! We had tears, threats, aggression, pleading for us not to take him. To see him like that broke our hearts and I cannot begin to tell you how close we were to unpacking the car and not going. But we stayed strong and suggested we just go for the first night and if he really hated it we would come home. By this point we were all feeling sick, anxious and at an all-time low.

We arrived at the Scout Site and after what seemed like a lifetime, we managed to entice our little man out of the car. We put our stuff in our room and headed out to the communal green area where all the kids were playing together and all the adults were chatting and enjoying the mood. Shae had a face of misery, a face of despair and mine and his dad's didn't look much better! "I want to go home" and "I've got no one to play with" came next. We offered to help him interact but he was having none of it. My husband and I just looked at each other as if to say “What were we thinking?”

After what seemed an eternity, a young lad called Femi came over to us and said "What's your name?", his reply was a very meek "Shae". Femi then asked Shae to come and play football with him. My heart was racing, leaping out of my chest, anticipating the "no" that was bound to follow. To our utter surprise, Shae gingerly walked off to play football, looking and checking we were still there, but he went nonetheless.

I felt myself welling up instantly. Please understand that, for us, this was more than just a relief, it was an absolute miracle and a day that I couldn't have been any prouder of my son. My husband squeezed my hand tight as I wiped away tears and for the first time......and I truly mean the first time, I felt everything was going to be ok for Shae. He played all night and made more friends. Every adult and child was amazingly supportive of our son. We went to all the activities and although Shae didn't participate in all of them, he did some without too much fuss, which was fantastic progress for us. He played football the whole weekend we were there, even rushing through dinner to get outside with his new friends. He laughed and played around the campfire with new friends and was totally relaxed as were we.

He watched and took everything in, every motor tic and every vocal tic and at the end of a very long day when we got back to our room he sat next to me on the bed and said "I'm not the only one that tics am I mum?". He got the biggest hug of his life that night!! The following day he asked to buy a Tourettes Action T-shirt which he proudly wore all day.

So why am I telling you this? Partly to brag about how great my kid is and how immensely proud we are of him, but mainly I want to urge anyone that has the chance to attend these events to go! The support and feeling of a family environment is overwhelming - you know you are all in this together. The experience of not being judged by anyone and feeling utter relaxation, and the life lessons learned are second to none. The amazing help by talking through your situation with other parents who freely give help and advice is priceless.

Since returning home Shae's tics have been off the chart and his vocal tics have increased immensely. For once I see this as a positive as I feel he's comfortable with himself for the first time in a long time and he understands that it's ok to express himself.  He openly tells people now that he has Tourette Syndrome and truly embraces it. What a difference a weekend makes!!!!

The work that the charity does and to the amazing volunteers that worked around the clock that weekend and always......I want you to know it's worth it!! You changed our lives that weekend and you allowed my son to gain acceptance for having Tourettes, acceptance that it's ok to be different and acceptance that he can achieve anything. And for that we are, and always will be, truly thankful!

By Rachel Miles, proud mum of Shae

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