Thursday, 29 April 2010

Journey to Statement - 2.1 - and the disappearing "u"

Slight change of plan following a chat at J's school today with the headmaster and inclusion teacher/SENCO.
They are delighted that we're so ahead of ourselves and were kind and generous with their immediate engagement and offers of help.  They think that instead of doing a parent request for a statutory assessment, that we should work on what we have already in our locker.  Something we have the time and ability to do because we're so ahead of the curve.

So we need to get ourselves an Educational Psychologist assessment and see if our current Kindergarten setting are willing to co-ordinate the Statutory request, adding in their own report, the paediatrician's medical report, our keyworker and whatever the Ed Psych says, alongside our parental letter.

It was a great meeting with this school that I know will be as wonderful for our complicated L as it is for our typical J.  I talked, listened, and wrote a few things down on the fat and ominous envelope I trudge around with me in my handbag.

But I'm also quite sad writing this, and seem to be doing quite a good job of half remembering and mainly forgetting some of the stuff that perhaps was a bit upsetting to hear.

The kind of comments that come from my mind and mouth, but that I'm not sure I really believe even though they're part of my patter.  Things that secretly I've been saying without huge inner conviction because they kind of break my heart.

"He may not always be this good".  "He may stall".  "He's a genetic timebomb and I'm just waiting for the bad stuff to start".  "He might not always be this lucky"

These are the perils of a parent of a child with a "disability" who's not yet shown how it will really manifest itself.

This lovely experienced SENCO seemed to think that these things I say are actually on the button and probably in our future.  We matched speech patterns as polite strangers do, me talking in such an informed and matter of fact way, which allowed her to reply in kind, believing I was all I seemed.

Right now a tear is trickling at the confirmation of my concerns about retention.  L has a wonderful brain and learns when you show him, but struggles to discover and possibly has flaws in his longterm memory.

Like recently, he's lost the "u" from his name when I ask him how to spell it.
It's just disappeared.
It's not a big deal, it's not a disaster, but it's a portent of something darker for me and one that again buts up against the tough stuff.

The fact that he needs more than even the "more than normal" stimulation we try to ensure. Perhaps more than I can give working full time and more than a life lived by remote control during the daytime can offer.

It's so hard not to jump too far ahead, but I know I have to help myself by not letting the fear in.  By opening my eyes, seeing it and then stopping being frightened, returning to the safe place that is loving him for what he is, what he has and all he can be.

But on his terms

And in his time

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