Good Luck for then Jbadgirl
My experience was mixed:-
- No genetic results yet (was expecting that to be the case)
- Consultant made a few oblique comments about ds2 playing in an
unusual' manner - he took out lego bricks and placed them on a ledge in her room. I felt that she was flagging up AS stuff by saying that, which may or may not be the case - but my gut feeling is that ds2's probs are more likely to be genetic (with perhaps overtones of autistic like behaviour). For example ds2 has only one kidney and is delayed with his gross motor skills as well as communication issues. Just felt that she was playing a sort of get out of jail card' because nothing else has materialised just yet.
I thought I'd draw her out' by saying - some of ds2's behaviour appears to be a little autistic-like and she said `yes, that is what I was thinking when I mentioned his unusual play'
As I said - if he turns out to be autistic, well he's autistic, I'm not trying to delude myself, its just that I feel that she is clutching at straws because no other sort of dx is emerging yet.
Anyhow, also had a bit of a stand off over something called `Team Around The Child' - which imho is a great scheme in place in Surrey, which gets all the professionals involved with your child around a table to discuss action plans etc..
Well, apparently, the consultant was `miffed' that ds2's SALT had arranged for ds2 to be included in the TATC scheme - he doesnt meet the criteria said consultant. What criteria, I said? Well, because he hasn't got a dx he hasn't got the same needs as say a child with Downs Syndrome. Excuse me, I thought, we are seeing exactly the same number of professionals as my friend does with her little boy who has DS. Well, said the consultant, parents of children with DS and the like (ie diagnosed!!) need more social support - where as apparently we (with undiagnosed kids)need medical support but no social support - BOLLOCKS!!! I couldn't believe what I was hearing!! She also said it was a question of funding - she made me feel like we were receiving something we were not entitled to and yet it wasn't as if we had referred ourselves! Rant Over.
Have calmed down a little since, because having spoken to someone who knows the TATC co-ordinator well, she said that they are actually looking for families to take part in the Scheme and that they wouldn't have accepted a child onto the scheme if they didn't meet the criteria. Also the Scheme is well funded which means there is no question of someone else not getting what they are entitled to!