Yesterday was a draining but insightful day. Firstly, I took Jude to hospital to undergo assessments with a paediatrician plus a couple of other SEN professionals to see whether or not he is on the Spectrum (ASD). I applied for this to be done back in October 2015 and a year and a half later we finally saw someone. The frustrating thing is, I initially wanted the tests to be done as I intended to view a couple of ASD only secondary schools but then wasn’t allowed to because he didn’t have that diagnosis. I know I can still change his schooling if I want to but the disruption may not be good plus I have hopes for the one he is starting at after Easter.
Anyway, in a nutshell, Jude has autism. It was kind of funny because they clearly felt the need to gently break the news to me but in reality I knew this already. I think that professionals sometimes don’t give enough credit to a parents level of knowledge both medical and educational. It is so so obvious with Jude, I’m not sure a Paediatrician was necessary for the diagnosis but anyway we now have it. It’s funny because I feel his education and care subsequently has a clearer route to it and without railroading Jude down a stereotypical path, at least there is an element of clarity as to what may or may not work with him. What did make me feel a bit uncomfortable yesterday was the fact the Paediatrician is adamant that Jude does not have Microcephaly. Microcephaly is where the brain is smaller than “normal” and whilst Jude has always been on the bottom rung of the graphs for head circumference, she doesn’t feel his appearance or even measurements lead to a Microcephalic diagnosis. For the past eleven years I have thought Jude has Microcephaly and now he doesn’t, it’s really strange and almost as if I now have a different arena for Jude to experience.
I now feel stupid for not insisting on having this assessment earlier on but I also realise that it isn’t entirely my responsibility. Jude had this assessment done in the US when he was toddler however, over in the UK they deemed his development too immature for the results to be assumed as valid. I agreed with this as he wasn’t even saying any words at the time so it was impossible for them to gauge accurately. However, why has no-one suggested this test between then and now? It’s only over the last two years that I have realised I’m eligible to council funded support so I feel frustrated that Jude has missed out on a whole childhood of help, guidance and family support. But looking forward I feel more able to argue for what he and the family needs. It’s an incredibly complex ride and as I was told by a council worker:
“you’re going to have a fight for this.”
The second part of yesterday was a meeting with the lady from the social care department. We chatted for two hours which was really lovely. She listened to what I want for Jude and we came to an agreement that we will see how Jude goes at his new school as there is no way the council will consider a residential post when he is moving to a potentially suitable school already. I spoke of my inability to go back to work because of the before and after school care required for Jude as well as the nightmare school holiday scenario where, in the summer holidays alone I’d need to find someone to look after him for six weeks! The lady asked about Jude’s father and how much support he gives me. I told her that he doesn’t help at all, he is an entirely inactive parent purely “babysitting” Jude once a fortnight and turning up for the occasional school show to give that appearance of the doting dad. In every way he could help, he doesn’t. I’m at my wits end and that’s why I so desperately call on the council to find me some viable solutions. Unfortunately for Jude’s dad, the “parental responsibility” he insists he possesses is going to take on a larger portion of his life soon as I’m going to demand his help more frequently. I really really want to move back into the working arena and can only do so with all the available support possible including in that list, despite the inconvenience it will cause him, his dad. Why is Jude’s care entirely down to me? It shouldn’t be. And whilst I don’t necessarily think him helping more is a long term solution, it may help for now until I can pursue something better for our whole family.
So there we have it. Jude isn’t microcephalic but entirely an ASD child. It’s weird to say that out loud because, like it or not, a disability does create a part of who you are. It certainly doesn’t define you but it adds an element of cells to your entire being just like gender, race and nationality does. He’s been really funny this morning and in a weird way, I feel more relaxed about his behaviour knowing that it’s largely because of the autism that he now most certainly has. We’re turning a corner at last 🙂
A x
