Through the eyes of my Tourettes child

Posted Fri 12th Feb 2016 at 16:00
by Keeley Cruickshanks

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A mother gives her perspective on a typical day in the life of her daughter

Through the eyes of my Tourette's child...

Waking up angry every morning, not just because I'm tired from a late night unable to sleep, but also the idea of getting dressed is too much. The clothes burn me inside out; screaming with irritability my mummy understands me.

Trying on every pair of underwear and throwing them at mummy who is trying to help me, before I find the perfect pair for the day - which still annoy me. It makes me so angry I sometimes hit my mummy, but I never mean it to hurt her.

I just don't know how else to tell you how much discomfort these normal every day things bring me. Brushing my teeth is always too much for me, I can't do it so I run away or hide. I get easily distracted by everything, it may even seem as though I'm not listening to your instructions because I often drift off into my own world and I'm unaware of when I am in my own world.

It may take ten times or even a wavey hand to get my attention before I can hear you and register your instructions to put my shoes and coat on. I'm aware of everything touching me, my underwear, my socks and even your breathing is making my blood boil, "your swallows are too loud, stop breathing!! I hate you" but my mummy knows how to fix me, with bubble lights, vibrating toys, full body massages, and head rubbies are my favourite.

During all of this, I have random tics to add into the mix. I twirl, I jump, I grunt, I say things that upset people, I don't have time to think, I do strange noises, I do things with my face and hands that may annoy people but they annoy me more. I have to wash my hands a certain amount of times every time, not just once. I have to avoid cracks in the pavements, every noise in the world is too much for me to take in at once.

The indicator in mummy's car is annoying but I can't help but copy that noise, I do it in class and the other kids get mad at me. The teacher tells me to stop making noises but I can't. It makes my whole body tingle and boil inside if I keep the tics in. I know I get out of my chair at school and bug people, I even tell the teachers to stop breathing and to go away but I can't stand the noise! It makes me angry inside and then I turn to shouting.

My occupational therapist and senco have given me exercises to desensitise myself but I can't focus and concentrate when people breathe so loud. I often fall out with friends because I like things a certain way and I don't understand the concept of people's personal space.

I can't handle it if a rule is broken and even the simplest thing like someone pushing in line, this brings my whole world down around my very eyes and I cannot cope. By the time mummy picks me up from school I'm so angry.  I talk to her mean but mummy still loves me. I try to argue and fight about bedtime because I hate changing and I hate my covers touching me, it's too hot all the time and mummy often finds me rocking in the corner of my bed naked because it's all too much for my brain to process the sensory.

I get mad and sometimes hit mummy, I hate reading to mummy because she breathes too loud, it makes me so angry but I don't want to be angry. Sometimes I meditate with mummy, with calming music before bed and use precious stones from my favourite crystals shop to help me sleep. I can never just turn off my mind, it never stops, every noise and my tics keep me awake, so I just lay there awake until 11 most nights even though mummy tucked me into bed at half 7.

I can see mummy feels bad for me because I can't sleep and mummy can't fix it for me. I wish I didn't have Tourette's or sensory processing disorder. My ocd and anxiety disorder make my life harder too. I know I'm hard work but my life is hard to live in this body, I know I've sworn because of my Tourette's and shout random things sometimes, do random things and collect shiny rubbish under my pillows but I am a lovely, caring affectionate little girl and I am so generous.

I have a heart of gold and my mummy loves me no matter what I get like. I feel safe enough to hit my mummy and know my mummy won't hurt me back. I'm sorry for my mummy but my mummy wishes she could make it stop for me as much as I do. I can't stop the horrible stuff but I know I'm loved and I am different. My mummy told me I should be proud to be me because I am amazing for coping with everything so well, mummy thinks I'm brave and perfect just the way I am and that helps me.

I'm Etnie and I love my mummy, I love my sister and I love shiny things. I have a sensory room and I have many fun days once I am dressed. I am also the best big sister ever and Adelaide is just as lucky to have me in her life, as I am to have her in my life. for me my Tics aren't the worst part of having Tourette's.. It's the comorbids that tag along with it, the SPD is my toughest fight everyday.

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