Monday, 17 September 2012

I have just lost

almost four years worth of research. No, it was not a computer glitch. It was a human decision - not mine.
I will not bore you with the details but it involved monitoring the communication skills of a number of children who do not speak.  I have been working closely with their parents and their parents are devastated. The children are confused and frightened.
It is not even a "cut in funding". We could understand that - if there had been any funding in the first place. There was not. It was precisely because there was no funding that the project and my research was set up.
I have not yet been officially informed of the "policy change" but the parents were informed on Friday. The children's means of communication were removed during the day - without warning. The research material was apparently removed from the files at the same time. When I tried to access the online material over the weekend it was "unavailable".
The children have been given an alternative means of communication but it will take months, perhaps years, for them to learn to use it. The parents have apparently been told that this is a "much better" way of doing things. It will make their children "more like everyone else".
As one of the fathers in the group said to me, "But our kid is not like everyone else and he never will be."
I am not sure the other parents would say that quite so bluntly but they have all faced the fact that their beloved child is not going to be able to speak and will always have limited communication skills.
At very least, if there had to be a "policy change", the parents should have been involved. I do not expect those responsible would have involved me. They have never been happy about the project. It never involved the state of the art technology that they seem to think is so important. We were working on almost the oldest technology of all - paper, pictures, pens and pencils.  It worked.
I am waiting to be informed about the decision. I expect that, unlike the children and their parents, those responsible will be unable to communicate.
And yes, I am angry - very angry.


Frances said...


virtualquilter said...


How long before pencils and paper are against the law!
Though judging by this incident some think they already are outlawed.

Judy B

Anonymous said...

I would be absolutely fuming! Child abuse! Bob C-S

jeanfromcornwall said...

It is the arrogance of these kinds of decisions that is infuriating to me. The people that make them have no understanding that they are pushing around people just like them- no - not like them: people who know what it is like to be bullied "for their own good".

the fly in the web said...

The arrogance of it...and the hurt occasioned to these children is horrible.

Anonymous said...

Yesterday (in the shower) I was thinking of a physically handicapped man I used to work with, who was provided (by the NHS) with a wonderful machine to help him exercise. A few staff were "trained" in its use - it takes at lest two to help him into and out of it and one to supervise him whilst in it. At the time, mumblings were made (by the lowly workers) about how often this very expensive piece of kit would be used, given that people in wheel chairs rarely left them to stretch out etc which they enjoyed. I left shortly after, but I believe that the machine will be used as a coat rack more often than a therapeutic device.

Anonymous said...

Sorry, my post should have been to point out that often the plain old simple easy-to-work method (that WORKS) is discarded in favour of complicated difficult, expensive methods that don't work or are too complicated to use.

I thought everyone at the day service should have some (simple) physical activity every day before we got to a complicated expensive machine for one of them.


cathyc said...

Is that it, the end of this story? Did you caring or other people caring help go back to what was? I guess not. This is too bad.

catdownunder said...

No, not passed back to me - technically they "own" it and they are not letting go.