Wednesday, 11 August 2010

Fighting for your child

I recently met up with a lady who also has a child with autism around the same age as my son. Her son is also starting school this September. However, I found out that her son doesn't have a statement of special educational needs nor are they planning to apply for one. I was quite surprised and asked her why?

Apparently they had been told that their son doesn't need one by the city council and that by law, schools in Coventry are supposed to be "inclusive" and make sure that all kids receive proper education regardless of whether they are with autism or are neuro-typical. She was lucky because the school she plans to send her son to has been really supportive and even going to employ someone new to help her son manage in the school. However, this is an exception rather than the rule.

Well, we had been told the same thing as well - that our son doesn't need a statement as he was not that "severe" but we were adamant that we "NEED" a statement of special educational needs because with a statement, a school would have to provide whatever is set out in the statement.

Afterwards, we were also told that we won't be able to get our son into a mainstream school with a special autistic unit because there was no place. We had wanted to go there because we had heard of so many good things about the unit and about the amazing teacher-pupil ratio (1:1) in the unit. Later on, we were told that there was no way we could get in as the unit was meant only for kids with higher capability and potential to integrate into a mainstream school setting - meaning our son was not good enough. So he is not severe enough to get a statement but too severe to attend the unit. So we wondered who were in the unit?

We definitely didn't want our son to go to a special school even though it looked like a fantastic place and the staff there were really friendly. We then decided that an intensive home based Son-Rise programme was the right choice and that we would be fighting the council to support that in the statement.

A second proposed statement came though the letter box several days back following our meeting with the Education officer SEN and we were left speechless when we found out that our son had got a place in the enhanced resource provision (the special autism unit) in the school. That changed everything and we had to reframe the whole letter we had written asking for funding for the home based programme.

What we want to emphasize is that authorities don't necessarily have the best interest of your child in mind after all it is just another child with autism and not their child. Most of the time, they are more concerned about saving money after all there are a lot of kids with autism and increasingly little money to go round. YOU, the parents have to fight for your child as he cannot fight for themselves. Your are a force of nature and remember that if you do not ask, you most likely won't get. if you think that things are going to fall into your laps then you are most likely mistaken.

I remember someone telling me a real situation whereby two families with autistic children lived under the same council (I can't recall where) but while one family got a funding of more than £30,000 per annum from the council for running their home based Son-rise programme, the other family got nothing even though the latter family had a child with more severe autism. I am not sure about the details but I think the difference was that the first one fought all the way for the funding, probably even going to a tribunal.

As for us, we won't stop fighting ever for Imaan becauase as I mentioned earlier, if you won't, no one else will.

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