Tuesday, October 03, 2006

Assessments, Cakes and Cars

Thank you all for your thoughts/vibes/prayers. Our bus journey to the assessment centre took over 1 1/2 for various reasons, but we made it with 15 minutes to spare (good job I allowed so much time for the 1/2 trip!). Samuel was seen by a paediatrician for his basic initial assessment - past medical history, that kind of thing.

I found it very hard at one point, when I had been explaining to the dr how Samuel struggles to express himself, and she then turned around and asked him a question in an obvious attempt to "test" that. Samuel was well aware that he was being assessed (even if he doesn't know the meaning of that word, he certainly understood the set up...) and I could see that he was trying really hard to find the right words, without giving in to any of his "coping" methods or usual ways to get out of such an awkward situation. I watched him struggle, eyes down, trying hard not to cry, and my heart broke. I stepped in and answered for him, as she'd let the silence go on for nearly 2 minutes and I thought enough was enough.

My only reason for seeking assessment is so that I can find a better understanding of how Samuel views the world, and how I can best help him in the ways that he needs to deal with it, and so that I can make life easier and happier for him. He is now old enough to be distressed and confused himself by some of his own actions and I want him to have clarity.

I'm not seeking labels, and I'm not really expecting any official "help" as things progress (I certainly don't want to deal with Bromley SEN as the dr suggested to help "get him back in school"). What I want is to be made aware of the correct issues, so that I can then continue to look into things myself - getting help and guidance from the families on the HE Special Needs list, from others in the HE community, from the internet etc. I know my child better than anyone, and I have my instincts to follow, but I need the knowledge and background information in order to do the best I can for my son.

On a bright note, in the afternoon the family got together to have a meal for Mum's 64th birthday. It was a bitter sweet time - these birthdays are harder without Dad and the emotions are very mixed. On top of that, my brother had confirmed this morning at his doctors that he does indeed already have coeliacs. More mixed emotions - if Dad hadn't have been ill and we'd found out about his undiagnosed coeliacs then my brother would never have been tested - and he too could have potentially become that ill and faced the cancer too. Poor Dad, it feels, in a way, that he sacrificed himself so that my brother had a better chance...

So now I have got two cookery books for gluten free from Amazon, and I'm going to be practising even more. I was pleased that my cake for mum came out ok, if crumbly, using more or less my usual Christmas cake recipe. I'll practice some more than upload the final gluten free recipe in time for Christmas!

Frustratingly, our 7-seater died on us totally yesterday. We've had an intermittent fault - that has now become permanent! However, we can't afford to call a mechanic out until the house sale completes.. Thank God that we have a second car (Dad's old one) but now it means having to run Roarke to and from work if I want to use the car, and all of those sorts of plans. Most annoyingly, I always try to give lifts to HE families in our group who don't have transport, as I usually have 2 or 3 seats spare. This now means I can't do that and will have to work something else out.

The recording of the overnight BBC Learning Zone is still working well, with Joshua enjoying watching the programmes and getting a lot out of them.

2 comments:

Anonymous said...

I hope the assessment process is not to stressful for you. It seems to have changed since my twins had theirs judging by the HESP advice I have been reading- We only needed a paed's opinion and one other - either an EP or SALT. ( we had SALT) They confirmed the paed's findings not the other way round. We got their dx by letter - job done. This was only a year ago.

Amanda said...

I am on the waiting list to get J assessed, have no idea what will happen or when. best wishes


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