Monday 10 May 2010

Journey to Statement - 2.2

I found the time and head space to do an update email to our keyworker and L's nursery head teacher.
The former came straight back volunteering to do the request for the Ed Psych assessment and drop off the forms.  The latter did what she does so well, which is honestly and without pussyfooting, state her thoughts and get things organised.
Today's thought was a little update on his toileting, as the example of this still being the only thing that she and her staff find makes L stand out and seem not quite "typical".  He's beginning to be unwilling to be changed, noticing no matter how sensitive the staff, that he's the only one having to be pulled away from fun things to do that.
obviously that makes me feel emotional, because it feeds into my fears on that basis.  At a party at the weekend I found myself tucking in his top into his trousers, so that the nappy wouldn't be seen.
I hate that I did that.
I hate that he feels different in any way that isn't in front of me which means I can't help him to make that difference look and feel magic and special.
I also don't know if I'm holding him back on toileting or reluctant to rush because I think we need to carry on at this slow and steady pace.  He's doing so well, his body is being trained by our routine and his mind and nerve endings are slowly following suit.  I'm so proud of him and I've been reading posts from the C18 lot recently about all of this that make me very very reluctant to rush because he's already exceeding expectations in that forum.
Gosh it's hard sometimes.
I feel so emotional at the moment, trying to turn off my crystal ball that sees all these problems ahead of us and challenges for him before they even present themselves.
I know it all feeds into this journey of the statement.  I have to present my views of my child with a calm unemotional head.  I have to enjoy hearing that he is seen as typical and able and bright, but balance it with my fear of nursery being for 3 hours a day and school will be all day.  I know it's over a year away and a lot can change but I still see things that hurt my heart a bit in the clues they give me.
I have to listen to her opinion because she's seen so many children through those doors, but I also have to listen to what my head has been saying while observing him in his peer group recently.  The speech that is great but not moving forward on clarity as I'd like.  The behavioural overwhelmed thing he did at home with new kids around at the weekend, and also at a party in a familiar place.  The things I thought he knew that he doesn't anymore.  Basic stuff that I think is giving me a clue in order for me to pay attention and watch closely.
What's amazing at the moment is the fact that D and I are engaged together on this, and he said something wonderful tonight.
We have to be thankful that we're even having any of these conversations.  His great progress.  His under the radar status.  Just think how lucky we are and how great that is because none of it was assured.
He also said the magic words.  We have to move forward now because we can and he is able to.  If at any point or with anything we can't, then we'll deal with it then.
I feel so filled up with a pessimism that I hope is just that and not something prescient.
I feel like the minute I think of any of this, I am immediately filled with tears that sit waiting to be allowed to come out.
I need to get a grip.

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