Beneath The Perfect

When I look at my girl, I’m filled with pride – the most beautiful girl, I have ever seen. She talks about her dreams for the future, and they are wild and wondrous. Too scary for me to even contemplate. She radiates with confidence, and I love that about her. She has learned to love herself, wholeheartedly.

We used to laugh when she was a baby, at her utter disgust of the feeling of grass and sand under her tiny feet. She would lift her legs with fear of even her toes feeling the prickles. A cute little quirk that would later make more sense but for now was no cause for concern.

She had a few little quirks, or personality traits. She liked to know our plans in advance and would ask each day what they were. She would notice when people broke the rules, and she would always let me know. “Mum, that boy is on his own” she would tell me from the back seat of the car. She never forgot a thing. Like the time Dave forgot to wear a hat in the winter and got earache. Everyday after that, she made sure to tell me that she should wear her hat, so that she didn’t get earache like Dave.

When she was six, she got her first tic. Although, I didn’t know that’s what it was until years later.

It started with wriggling her toes and would change after six months to a year. There was only ever one tic present at a time.   From blinking her eyes excessively to clearing her throat frequently. It never crossed my mind that there might be one explanation for these seemingly separate symptoms. As they lasted so long, we attended the GP many times, but we were dismissed.  I turned to Google and that’s where I was met with the term “Tic”.

Tourette Syndrome (TS) is a condition of the nervous system. TS causes people to have ‘tics’. Tics are sudden twitches, movements, or sounds that people do repeatedly. People who have tics cannot stop their body from doing these things. Tourettes remains one of the most complex and misunderstood conditions, even by professionals and it is a lifelong condition.

Tics and associated symptoms are different for each person and only 10% of people with Tourettes have swearing tics.

There are currently no NICE guidelines for Tourettes in the UK, which means that there is no guidance for GP’s to know who to refer to.

I read that tics are involuntary movements and sounds and that if you have multiple tics, for more than a year the diagnosis is Tourettes. I also read that there is no cure for Tourettes and no treatment either, so I held on to the fact that I knew what it was, and I was content that the tics were nothing to worry about. Elise would explain that she had to do the tic to relieve the “itch”. I later learned that this is called a premonitory urge which is a sensory build up within the body before a tic.

As years passed, the tics continued. Still, I didn’t see them as a concern. They didn’t seem to bother her much. Not until, she got an eye rolling tic and a neck tic at the age of ten. They became more noticeable and problematic. They kept her awake for hours at night and she went from having just one at a time to having multiple tics. By this time she was in year 5 and preparing for SATS. The stress and anxiety caused the tics to increase, and her sensory difficulties increased too. I remembered back to her being a baby – the grass and the sand and I realised she’d had sensory difficulties all along.

Like the ‘Princess and the Pea’, she felt every crease, every ripple in the sheets, in her shoes, her socks and clothes. The overwhelming urge to even up both sides if someone as little as brushed past her. Accompanied by sniffing and grunting, throat clearing and blinking, neck stretching, leg stretching, stomach tensing, breathing patterns, knee knocking and repeating words and sounds. Kids at school began asking why she did ‘that with her eyes’. By this time, she’d had tics for four years and no teachers had ever noticed them. She hid them well, turning her head before the tic so that people wouldn’t see. We landed lucky and saw the right person at the right time and Elise was diagnosed with Tourettes.

Sign the petition to help increase funding to provide support and research into Tourettes Syndrome:
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Tics were painful, she felt embarrassed and more than anything she was frustrated that she couldn’t just stop them. As we navigated our way through the diagnosis, I poured my heart into searching for a cure that didn’t exist. I wished I could take it all away and be the one with Tourettes so that she didn’t have to be. After extensive research and a few failed alternative treatments, we accepted the diagnosis was here to stay. Elise made the decision to tell her closest friends. They were accepting. After all, nothing had changed. She was exactly the same person she was before, only now; she had an explanation.

The diagnosis opened doors of support at school, and it meant I could learn everything about it. Not from professionals. There aren’t many in the UK with knowledge of Tourettes. Everything I learned, I learned from other families who are living it just like us. I learned on the job about the suggestiveness of Tics and that just sitting somewhere with no leg room would cause leg stretching tics. I learned that the tic had to create a feeling of ‘just right’ and that if it didn’t, the tic had to be done again, and again, and again.  Even when the tic met the needs, the urge would return within seconds, leaving little rest between.

I’ve learned that Elise’s quirks are associated symptoms of Tourettes, as with neurological conditions, when you have one, you will likely have traits of others as well. I pieced together things I had noticed over the years, and I wrote lists that helped identify exactly what Elise’s difficulties are. Not only does she have motor tics, vocal tics, mental tics, and internal tics, but she also has sensory processing difficulties, OCD, autistic traits, perfectionism, insomnia, zoning out, anxiety, and intrusive thoughts. There are meltdowns and explosions of tics and sensory difficulties that are immediately affected by stress, change of plans or something not going right. Her strength and resilience amazes me every day. Looking in from outside, never would you know what she goes through.

When I look at my girl, I’m filled with pride – the most beautiful girl, I have ever seen. She talks about her dreams for the future, and they are wild and wondrous. Too scary for me to even contemplate. She radiates with confidence, and I love that about her. She has learned to love herself, wholeheartedly.