Since September, Shay has had numerous days of school due to him coughing and having the odd virus. Shay is coping really well with the winter months upon us, it has been a long time since he was in hospital because of an illness.
My priority for Shay at the moment is to work through the red tape for him having an educational statement. Our first attempt was declined and our local education authority turned him down on the grounds of refusal to assess. Utter disbelief after the phone call I received!! So the following few months will see me advocating for Shay at meetings, appeals and if necessary tribunals. Shay is a very bright boy and his general knowledge is incredible to say the least. When it comes to other subjects he is like a sponge but a day later its forgotten. It seems he is able to take in all this knowledge but when he comes to retrieve it he finds this very difficult. I find outside professionals do not understand the syndrome he has especially educational specialists. They need to look at Shay as a whole and not concentrate on the little bits if that makes sense. To me Shay's energy in the playground is amazing, something has to give for this and I think his learning has taken a major knock because of this.
I have spent hours today researching trying to find links with mitochondrial disease and a child's education. There is very little on the net with this and I only came up with a few points to help my case with the education authority.
Shay looking super cool, driving a police digger!!
