1 mum, 2 ticcers and a bumpy journey through education

Posted Tue 3rd Nov 2020 at 10:54
by Kim Xhogu

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Kim Xhogu gives us an honest account of her experiences of supporting 2 children with TS through school.

Hi, so Tourettes Action asked me to write a blog about my experiences of having a child with TS in school.

I’m not sure where to start really! I guess I could tell you a bit about me - I have 3 children, a daughter and 2 sons, both of my sons have Tourette syndrome. I’m a caregiver for a senior care company. A job I applied for 19 months ago (a job I love and has been a godsend!) to get out of the house and be less available to the school. Until then I’d happily been a full time mum for 14 years.

Brandon is 15 now. Diagnosed with TS at 10 and Alban is 11, also diagnosed at 10.

Brandon started secondary school happy, confident and in the higher sets of most subjects. Within months that had changed, he became withdrawn, unhappy and was dropping down sets in most subjects. Towards the end of year 7 I was receiving emails and phone calls sometimes several a day from various staff members. All telling me Brandon was being disruptive, fidgety, refusing to work, walking out of lessons and to inform me of detentions, isolations, internal exclusions and even a 2- day exclusion. Things were so bad that even if Brandon hadn’t received a detention that day he was still sitting one to work off the back log! I lost count of the times I was told to “have a word with him”. Don’t get me wrong Brandon, had a small amount of staff/teachers he could go to, who “got” him and saw beyond what most couldn’t. I will be forever grateful for that handful of people.

The main thing that cropped up time and time again, was that every time a different member of staff called, I had to tell them Brandon has TS, explain how it affects him, explain why he just had to get that calculator out even though he’d been told they weren’t allowed; why he continuously tapped his pen or his feet; why he was making seemingly rude gestures at people (a wrist turning tic); why he felt uncomfortable talking in front of the class; why he was so tired even though he had a sensible bedtime and why he spent so much time in the medical room with aches and pains caused by his tics. Also constantly explaining that yes, everything is fine at home, as if it was something we were doing to Brandon that was making him like this.

I paid to have some leaflets printed and took them in to school, plus information I printed off and even bought them a book I’d had recommended to me.

I’d made sure I had put TS on the school admission forms, I’m not sure if they didn’t see it as an issue or if it was totally missed because after all “it is only swearing”, but when things really went downhill with Brandon’s school work, I called the school to arrange an appointment with the SENCo. I shouldn’t have been surprised when I got there and she wasn’t aware of Brandon or his TS. So, she then started the process of creating Brandon’s “Student voice/ Pupil profile” and gave him a time out card in the December of year 9!

Things didn’t improve, he got detentions for using his card, he got mocked by a teacher and subsequently got excluded for throwing a box of glue sticks at him, and so it went on.

My memory is a bit foggy but this was around the time that Brandon had been to St George’s to see Dr Simmons. She gave me the Tourettes Action and Tourette’s Sussex Facebook page details.

This was like a weight off my shoulders! Finally, some support and contact with people who understood!!
One of the lovely people who offered us support was Lucy Toghill, the Tourettes Action Education Manager. I spoke to Lucy on the phone and I instantly felt better - I/we weren’t alone in all this.

I gave Lucy’s contact details to school and eventually they contacted her. Lucy went into school, observed a couple of Brandon’s lessons, met me afterwards and offered the staff some training to help them understand how/why TS effects learning. Not many took her up on this but it was a start.

Lucy made me realise I had to be Brandon’s voice, say no to the detentions that were TS related and really fight his corner.

Some staff started to talk to me about Brandon differently, like they wanted to help. Others still didn’t seem to care.
Lucy went in another time to do the same thing and offer more staff training to Brandons teachers.

This time, as Lucy had only a limited amount of time, she decided she was going to talk specifically about Brandon and how TS affects him personally. I’m happy to say, this was a game changer.

More staff had turned up and showed an interest. He stopped getting detentions (which was great because I was getting fed up with telling the school he wouldn’t be attending the latest detention) and then his work improved, as did his attitude to school. Things were looking up and not a minute too soon, with him now being halfway through year 10.

Then lockdown happened.

I have to say, although the circumstances were obviously awful, lockdown was the breather we all needed. Brandon went back to school in September into year 11 as a happy and positive student. He’s currently halfway through his mocks and has finally been able to test the extra time and separate room that we’ve been working towards for him. It’s reassuring that when the GCSEs start he will have what he needs in place.

I realise I’ve not mentioned Alban much, that’s because he’s still early on in his TS journey. Sadly, but not surprisingly, from the start of year 6 I started to realise the occasional tics he’d had for a couple of years were probably TS. Certain things he did reminded me of Brandon, together with a difficult relationship with his teacher, lead to a hellish few months for him (and me as I had to constantly defend Alban, explain his lack of work/concentration, fidgeting, poor handwriting and so on).

A change of class and teacher in January this year was what he needed, and along with his diagnosis, although he was a bit upset and confused, he seemed to cope well and until lockdown things got a bit better for him and he got on well with his new teacher.

Alban is now in year 7. So far he’s enjoying secondary school more than year 6!

There have been a few issues, but I am armed with the knowledge and the confidence to fight his corner and fight for what he needs as I have for Brandon. I feel that confidence because I know I have the support behind me. My only wish is that I had been pointed in the direction of Tourettes Action at the point of diagnosis when Brandon was 10. This would’ve saved a lot of stress and heart ache...... but that is a whole new blog!!

I thank you from the bottom of my heart for reading this far..... assuming you got this far! Haha.

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