Mum Paula reflects on a challenging year for her son Ioan, who has Tourette syndrome, and looks ahead to the day he moves on from primary school…
Ioan was diagnosed with Tourette’s syndrome in September 2015. This year has been particularly hard in understanding the behaviours that go along with the Tourette’s, not just the tics. Not only has he got Tourette syndrome, Ioan also has Obsessive Compulsive Disorder, anxiety and is also thought to have Autism Spectrum Disorder. It’s been a long road trying to get a diagnosis for Ioan.
However this year is a big one for Ioan as he is currently in Year Six getting ready for the transition into comprehensive school next year. We have been met with many problems on the way, but with support from the school where he is now, and the new school he is going to, I feel that we are slowly making progress.
We have seen many tics over the years but this last year they seem to be getting more intense and complex. Before, Ioan would have the odd tic here and there, but now they seem to be going into a sequence. For example, he will have a shoulder tic with an eye squeeze whilst grabbing his nose and blowing and then punch his arm out. Ioan can sometimes catch you while sitting next to you with his tics as they can be quite violent. With Ioan’s Tourette syndrome there is an emotional side to it as well. Ioan often lashes out in temper and frustration due to having no control over his own body.
As a parent, the months leading up to Ioan going into a bigger school with new people who don’t know about his condition is very daunting. This does concern me as Ioan can be a target for bullying. Before Ioan was diagnosed, he did go through a bit of bullying from fellow pupils in the school he is in now. But as soon as the school SENCO was aware and made a PowerPoint presentation for the children to understand, it immediately stopped. Yet my fear is that children and adults in comprehensive will not have the understanding of this condition.
- International Day of People with Disability falls on 3 December.
- Action is funding research into Tourette syndrome. You can read a blog about the study here and find out more about Ioan, who is 11 years old, here.