Wednesday, 12 March 2014

Assessments, letters, conversations, and more about pee :)

It's been a while . . . there are lots of reasons for that - life has been crazy, but yet there hasn't been much to say, I've not been well, we've dived head first into exam prep, you know how it is, Life just sort of happened and here we are weeks after I last wrote anything.

Of the things that have happened, most have been pretty straight forward :

J: After the appointment with the community paediatrician to discuss frequent "little leaks"  things have gone really well.  J has taken to peeing standing up pretty confidently and that, combined with increased "shaking" has pretty much stopped daytime wet spots.  He is also drinking more, and we are focusing on him drinking cranberry juice or water, and he is able to go for longer in between needing to go.  Biggest of all we are having virtually NO night time issues!  Previously he would have a small accident most nights, and a bigger one every few days.  He *did* have a few nights of proper bed soaking just after we saw the doctor, but within a week those had stopped, and in the month since we've had one night time accident.  Just one!  Yay! 

J also had an ultrasound on his kidneys and bladder, just to check that everything was fine, and it was.

So, *that* issue is pretty much sorted.

We had a response to the letter challenging the report of the last meeting we had at CAMHs (if you followed that!)  It was really just a place-holding letter, saying they would look at their notes and be in touch.  So that one is still on-going.

M: On the 4th of March M had an ADOS assessment.  ADOS stands for Autism Diagnostic Observation Schedule.  He was nervous going in, we couldn't go in with him, but when he came out he was very VERY bouncy.  And really that's all I can tell you.  The two ladies who did the assessment said they'd be in touch, but couldn't give us any idea of when.  So now we wait some more.

L: Well, there are a few points for L.  Firstly he is doing very well with his exam prep, he is getting his head around tricky maths concepts, and remembering more names for Biology too.  He is working his way through the books, and we should be right on schedule for the exams.  What's not so great is that we have gone WAY past my own maths knowledge.  I got a C at school 20+ years ago.  This stuff is a lot harder than I remember and quite a bit of it is new to me.  Still, we're learning together I guess.

In a week and a bit L will be rejoining a local youth scheme that tries out various sports, they are kicking off with a roller disco, but last year they did canoeing, rock climbing and lazer tag (and a pile of other stuff before he joined.)  He's nervous but looking forward to it. It's interesting seeing his attitude to sport (that it's pretty pointless) given that he is probably the most physically able of the bunch. 

The most interesting point though was a random conversation.  L asked me when we first heard of home education.  I had to think quite hard, but remembered it was when I was having trouble nursing L.  For some reason home ed was mentioned on an old Usenet group, though as it was a US based group I suspect it was called home schooling.  So the conversation went on - when did we decide to try?  I explained that we had considered home ed before L went to nursery, but decided to give school a go first.  Things moved on and he wanted to know the reasons - that surprised me, I thought he knew, but he wasn't sure of the details.  He knew he wasn't happy at nursery but couldn't remember why - so we talked about those bits.

L didn't like nursery, he hadn't been keen since a week or so into things, but it just got worse and worse.  He didn't get stressed at being left, he just didn't want to be there at all.  He remembers doing "just enough" so they would let him go off, and that seems to relate to the fact that this particular pre-school nursery only recorded a child as being able to do something if the child did it when they were being assessed.  So once or twice a week they'd get each child to sit with their specific worker and do stuff.  L seems to have disliked performing (!) and so did as little as he could.  That will be why when he left - 8 months after starting - the nursery staff still thought he could only recognise the numbers   1 - 3, but at home he was working with 0-12 . . .

There were lots of other things, of course, specific incidents that stayed with me.  I mentioned one about drawing.  L - being about 3 - had done a drawing that was all scribble an enthusiasm, not so much actual drawing.  He'd shown it to one of the workers and she had said something along the lines of "Oh what a lovely XXX" - I never did find out what she thought it was.  Whatever she said though was NOT what L had drawn.  On the way home he ripped up the picture and threw it away.  He got very angry that he didn't draw what he had meant to draw.  And that was it.  No more drawing from L.  As we were talking I could see that he hadn't entirely remembered the incident, so I asked him what he did remember.  He said he remembers being told his drawing was rubbish, remembers enjoying drawing before that and not feeling confident enough to draw after.  He remembers trying to draw afterwards and just not being able to because he knew it would be wrong.  So he remembers the lingering emotional effects even now - 11 or more years later.  He feels that he would love to draw, but that he has lost years of practise and training muscles to do what he wants.  And it makes him sad.  Very sad.

We've talked it through, and he's going to try a handwriting program that is actually designed to train the hand, brain and proprioceptive system at the same time.  I hope it isn't too late, but I guess we'll see eventually :)

Lastly we have A.  She is bumbling along, mostly happily but every now and then extremely stroppily.  She has just learnt to ride her bike without stabilisers (still a bit wobbly though!)  She can read but is very reluctant to, she can write and is wanting to more and more, and she loves to draw and create.  Not much more to say really!

Maybe tomorrow I'll have a visit to tell you about - if all goes according to plan!


  1. How sad. Really shows how one comment can affect someone, especially a child so deeply. I used to be a primary school teacher,never had much opportunity tp work with very little ones but from the limited experience o had it was to talk to them and find out about them, and to never assume anything x

    1. That's how we've always done it, and to be fair I don't know exactly how it was said - I assume it was meant to be encouraging - but the way it was heard is clear, even at this distance :( similar things happened with painting and colouring.