Yesterday I came across a website for a charity called Brainwave based in Somerset. They aim to help children with complex needs like William to achieve their full potentential in a physical and cognitive sense.
How it works is that we would go there for 2 days initially, the first day would be spent carrying out an assessment of William and his current abilities. A programme would then be put together for him which would be explained to us during the second day so that we can go home and carry it out on a daily basis in his home environment. You then return every 4-6 months for a reassesment so they can see whether William has made any progress and adapt the programme accordingly.
Its sounds brilliant, the reviews I found online are all realy positive and it has given me new hope for him! They are sending me the information pack so I can put him on the waiting list, they're currently booking appointments for July so hopefully we'll get in during the summer and can make a holiday of it! It is quite expensive so I can see some fundraising may be required in the future! Sponsored run anyone!!??
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Just back from a check-up with the Paediatrician, she was pleased with Williams progress on the whole, made a few changes to his medications but nothing major so thats good news. She started the chat about education even though he isnt due to start school until September 2013 but because he's going to need a statement of education needs she needs to get him into the system sooner rather than later! She said that we'll probably start work on the statement around September next year - so thats something to look forward to NOT! (For those of you that havent heard of this, its a statutory document that has to be done for any child with any special needs to ensure that they have everything in place when they start in either a mainstream or specialist school. It details all the therapists that need to be involved, equipment etc etc)
The paediatrician also said we should start to think about having a meeting with her without William so we can discuss his future needs, medically etc as she forsees him having more medical problems than other boys of his age as he cannot fight off infections etc. I think its a bit soon to be worrying about things like that when things are going so well but the doctors always seem to bring you crashing back down when you think things are going well. And really, who knows what the future holds, yes I know William is not going to have the same life as an average child but he isnt average, but really we have got enough to worry about without having to worry about planning for things that havent happened yet surely?!
Anyway, enough of my ranting. Thank you for continuing to read my blog, I hope it is of some interest to you. Please feel free to pass it on if you think anyone else would be interested in reading about my lovely boy! xx
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