So my campaign to raise awareness is moving slowly, but surely. I have been in touch with Tim Howard (Everton FC Goalkeeper) who has Tourettes Syndrome and he is keen to help.
I have also met with my local MP, because while on this journey I discovered like many I am sure, that you have to battle to get the support needed for Tourettes. I am putting this down once again to awareness.
Although my daughter got a diagnosis for Tourettes we were not offered any CAMHS support. I had to ask and this was only because Tourettes Action mentioned it to me. This really surprised me because if I got a diagnosis as an adult for Tourettes I would have a real hard time accepting this. So for a child to get a diagnosis, why wasn’t this support offered?
Now although we are getting this support I still think that the therapist doesn’t fully understand what she is meant to be treating. If my daughter had an eating disorder or had been through a harrowing ordeal they would be better prepared. So once again I feel I have to become ready for a battle.
Another thing I have discovered is that when I am reading about peoples stories, so many of them are saying that they were not diagnosed until their teens or later. Is this because parents aren’t bringing this their symptoms with a doctor, do they even know enough about Tourettes to link the two together?
I know now that Charlie has had Tourettes since she was 3 years of age and she got a diagnosis when she was 8. I didn’t link her symptoms with Tourettes until 2 weeks before the diagnosis. I knew a little bit about the condition but that still didn’t help me make the connection. If there are parents out there like me, would it not be easier to raise awareness in schools than expecting the whole population to be educated in Tourettes. Just like the way ADHD or ADD is flagged up in school, could the teachers not be educated and know what to look out for.
The reason I though of this is because I read an article about a young boy who got diagnosed in his teens, but by that time he was in secondary school and had been identified as ‘naughty’. So he wasn’t seen as a Special Educational Needs (SEN) child, had not been put on a school action plus programme and had not got a Statement. A Statement tells a school all SEN for that child so they are fully aware of the condition; this would prevent a child being labelled as naughty and stop them getting excluded, like this child had.
I have highlighted all these points with my MP and he is working on bringing this to the attention of the Health Minister and the Education Minister. I will keep you posted.