Thursday 22 November 2012

I am an Advocate for my Child

Having a child with special needs is like being dropped off on a remote island with no equipment and expected to "get on with it". You are either going to flounder hopelessly, or quickly acquire the necessary survival skills. Or, perhaps a bit of both!

Its not as if someone hands you a big book with everything you need to know. You pick up information as you go along. Strange code words like SEN, IEP and big words like "pragmatic semantic", start to make sense over time, but sound like a different language when you first hear them.

I wish I knew everything I know now back when my son was small. I would have almost certainly pushed harder for a statement of special needs back when he was in Reception, still in nappies and scribbling indecipherable babble, whilst all of his classmates wrote their names neatly in their books. But I didn't. This was because, at the time, I had never heard of a statement of special needs. And now I am in some sort of educational limbo, or as it is more commonly known, School Action Plus.

School Action Plus is when the school know your kid has special needs, but do not get any extra funding to support them. Staff are stretched, and unless you make a big fuss, they will presume everything is alright.

Case in hand. Birds in a nest......

You know on those nature documentaries where the baby birds are in the nest and the mom comes with the food? They all start chirping and flapping. The big fat noisy one gets fed and the little runty one usually gets nothing, withers away and dies. That's life. You have to be big, fat, noisy and flappy to get anywhere with school staff.

I was talking to one of the other moms at the school who also has a child with aspergers. I asked her how she felt the school coped with her daughters disability.

"Do you want the truth?" she whispered.

"Terrible."

She went on to explain how she had to fight to get everything for her daughter. If she went quiet, the school would presume everything was fine and do nothing.

Fight. That is a word I hear all of the time.

Every parent I know with a disabled child has had to fight for their child's education. Fight with staff, fight with the Local Education authority. Fight with school governors. That's a lot of fighting. And the fighting doesn't stop there.

I found an interesting document online, which was about making every school a good school for people with autism.

It made a statement that really got me thinking. Basically, it said that lack of progress is cumulative over many years. The current year teacher may not notice, but the parents will.

This is a scary thought. My son's brain is still making connections. If the education system is failing him now, then he will fall further and further behind.

I was speaking to a friend who has an autistic son who has recently taken his GCSE's. He got mostly A grades. She said that there was no way he would have acheived this is they had not fought for a statement when he was young. It was only because of the extra support that he had received in class that he did so well.

That scares me. My son has no support.

I spoke to his teacher this morning about me going in and helping him in class a few days a week. She was really enthusiastic about the idea.

I know it will help, but I can't help feeling like I am doing the school's job for them. If I am in class helping my son, there is less incentive for them to do anything about the situation.

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