Wednesday, 29 October 2008

Autism Speaks are here in the UK

Bob Wright from Autism speaks US has landed in the UK. For those living here you may have seen them on BBC breakfast time in The Telegraph and The Times.
Autism Speaks attended the inaugural Annual TreeHouse Lecture, entitled “Are we Ambitious Enough about Autism?” and have already met with some of our MPs. Action for Autism has also blogged about their arrival.

So my UK blogger friends - what are your first impressions?
And my US readers - we would love to hear your thoughts!
So - Does Autism Speaks speak for you?
And i am very happy to report that C's home have much improved. Thank you for your support and some excellent suggestions. :)

Monday, 13 October 2008

When labels don’t help

Every week C‘s home send me a photo.
This one sent a few weeks ago - Cs finger speaks volumes! (even though it was inadvertent)
I haven’t written much about Cs new home as things have not been going to well. I expected settling in problems, but not the ones that C ended up facing.
The home I spent 2 years searching for, the home I felt had the right attitude and would be right for C has totally let both C and I down. I have been gutted. C's last 2 visits home I haven’t wanted to take him back. (Note to self. The Managers of these places do a good PR job but its the hands on staff who do the actual caring, and can be a different story)

As C does not speak or sign all I have had to go on his appearance and body language (which I am very good at). And what the staff tell me - which hasn’t been much.

I was very concerned about what I was seeing. I thought the staff were trying to get away with as little as possible. Neglecting him and not taking care of his basic needs and welfare. But in reality what I found was that staff were taking the line of least resistance/avoidance as they were frightened of him. (Shrek lives up to his name!) Not a good start. (Note to self - trained staff does not necessarily mean confidant staff. )

The labels that preceded C to the home have not helped. Low functioning. Challenging and self injurious behaviour. And of course they would have read all his reports and spoken to staff from his school who would have told them some horror stories.
So they were seeing his labels and not C as a person first. Putting mountains in the way that need not have been there.

But after making some ‘big’ complaints and much talking with the home with the help of my Case Manager I think we have sufficiently kicked them up the back side and things have thankfully started to improve for C.

Many thoughts have been going round my head through all this (especially at night) if this was the best home i found -what must the others be like. And my concerns about what will happen when i am no longer around to keep on top of things have quadrupled. So i need to work harder on encouraging and supporting them (!!) instead of being upset with them. (Note to self. Research back up plan if it doesn't improve enough and i feel i need to take him out)

And I was also shocked and find it hard to believe to be told that I am 'rare' as a parent. That not all the people in C's home (and other homes) have concerned parents who take an interest and want to be involved for a variety of reasons. I find this very sad. But it is also no excuse for them to do their best. (Note to self. Offer to adopt one of the other residents who has no one looking out for them)

I came home to a parcel yesterday a ‘framed’ photo of C in the homes sensory room, laying on a vibrating mat, listening to music and watching a bubble tube, looking happy and relaxed. I took this as an apology from the home and trying to show me that C is ok.
Its going to take a lot more than that to regain any trust. But at least I feel they have got to message, and i appreciate the sentiment.

Actions speak louder than words and they are at last making the right actions.
Time will tell.
I hope my next post will be more cheery!