Educating the Educators

Posted Tue 1st Sep 2015 at 12:49
by Sophia

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Sophia speaks frankly of how she had to take responsibility for her education by enabling the educators around her to understand TS and work with her to ensure a supportive, successful education

It was the 8th of March 2012. I woke up and began barking and jerking violently.
I remember so clearly thinking ‘What’s happening to me?’. I was absolutely terrified!
All of sudden, aged 16, I’d lost control of my movements and vocalisations.
I didn’t know it yet, but I had Tourette syndrome and here was its first appearance.
I tried to go to school as normal, whilst also attending lots of appointments to discuss this sudden onset of complex tics, but things had changed dramatically.
No longer did I blend into the background, away from any attention that would make me feel so very uncomfortable. Instead, people could now hear me before they saw me, and I hated it. I hated not being able to walk into a room without everyone turning around to look at me.
That being said, I knew the staring was just out of curiosity. Yet, how could I possibly explain what was going on, when I didn’t even understand it myself?
Things were rapidly deteriorating. I was struggling to attend lessons. I was ticcing constantly and would spend hours pacing up and down. I was exhausted. Sitting was difficult, writing was difficult, and I was at great risk of failing my exams.
Although my teachers provided invaluable emotional support during these times, there were no practical strategies. Nothing to help me continue learning and studying, which is something I love deeply.
I realised very quickly that my teachers simply didn’t know how to help me. They were great at accommodating the difficulties I experienced due to being autistic, and having OCD, but Tourette syndrome was different. It was just as new to them as it was to me.
So I decided I would need to educate my educators, but first I would need to figure out how the condition affects me personally, and be able to explain that to others.
Often I felt excluded because of a neurological condition I couldn’t control. I spent the majority of my time sitting in the dining hall or in the Special Educational Needs department, because I was struggling to cope.
I started to open up, to really go into detail about my tics and how I felt inside, both physically and emotionally. Those around me eventually began to ignore the sounds – they became background noises. Everyone had adapted, and they didn’t always notice my vocal tics. I wasn’t a distraction, which is what I worried I’d be.
I worked with my teachers to think of, and implement, some strategies. One strategy was being allowed to write in pencil instead of pen. My OCD wanted everything to look perfect on the page, but my arm tics had other ideas! Writing in pencil stopped me from having to keep rewriting my work.
My seating arrangement meant that I had enough space around me to move, and I was close to the door. I could leave if things got too much, and return when I was ready, without causing any disruption.
These small adjustments allowed me to reintegrate into all of my classes, and most of the time, just knowing I could leave if I needed to, resulted in me staying for the duration of the lesson.
Through educating my educators, I was given the opportunity to be just as successful as my classmates. They, too, benefited from being on the Tourette journey with me. They learnt to be empathetic and understanding. They went from avoiding me, to talking to me, and offering a reassuring smile from the other side of the room.
Tourette syndrome is a learning experience for all who are around it, including those who have it. It is not something that should be feared, but instead embraced.
Now, I attend university where I continue to educate those around me. Surprisingly, despite there being thousands of students, I am yet to meet anyone else with the condition. It saddens me, as it makes me wonder just how many students decided not to further their education as a direct result of their school experience.
By educating the educators from as early on as possible, we can ensure that students with Tourette syndrome are included, supported appropriately, leave school with positive memories and the confidence to pursue their dreams.

You can read insights from Sophia on her blog 'From Struggle comes Strength'

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