So we had the first annual review today since James' was first given the elusive Statement of Special Educational Need. There were positives and negatives as I knew there would be and a long discussion about the difficulties James currently faces in school. Academically he has done well and progressed beyond all expectations in both numeracy and literacy. At the age of almost 9 he can now read - hesitantly and with lots of pauses but a world away from where he was a year ago. Thank you Mediknet for the change there.
On a negative note J's Personal, Social and Emotional development has not progressed and his attainment there is still measured in P-scales (recorded when a child is still working towards National Curriculum level 1). Although this was not a surprise to me given J's recent difficulties, it was still hard to see written in black and white.
We discussed J's ability to remain in mainstream education right the way through his school years and like everything else there are fors and againsts. On a positive note he is achieving academically now and remaining in mainstream education with children who do not have his difficulties will be excellent preparation for life in a mainstream community as an adult.
On a negative note there is the risk that J will become more isolated with time as the gap continues to widen between him and other children of his age. Currently he has many friends in the playground but generally these friends are girls. The girls (and especially his close friend M) tend to mother him and he thrives on this. They also invite him to their parties while the boys do not - this is good but there will come a time when inevitably the girls will cease to invite him as well. If this is to be the case then an education in a non-mainstream school geared up for children with ASD and co-morbid conditions might give J more social contact.
Thankfully it is a year before I will need to really consider this and in the meantime I have been encouraged to visit the secondary school which J's primary one feeds into and also the two local special schools which would see him through to age 16.
It has all left me feeling both positive and also a little sad. Without a doubt J is struggling at the moment and although I would not swap my lovely, funny and special little boy for anything in the world, there are times when I wish I could take away the difficulties he has, remove the autistic brain which makes his life hard and replace it with a neurotypical brain which would allow him freedom. But then I guess J would not be himself if that was to happen and I love him as he is -I just wish his life was easier for him, I wish the labels didn't itch, the noises didn't distress, the changes to routine didn't upset. I wish he could settle in the evening and fall asleep with ease but that's just not how it is and all I can do is find the right support to help him cope with these things.
So onwards and upwards, a CAF to be completed, the Aiming High for Disabled Children service to contact and a major strop to be had with the PCT which after a year and a half STILL has no real Occupational Therapy service for autistic children with sensory issues despite letters promising parents that this was being developed.
Watch this space.