Friday, 22 November 2013


This Wednesday I went to the monthly Space meeting, it's a self help group for careers/parents/anyone interested, of disabled persons. I have to confess that I don't really like going there, they come from a different place to me, although I am not dissing them, the service they provide it's great if that's what you want. Now that sounds terrible - what I mean is, they listen and understand, and then give you hints to deal with whatever situation your in, so that's great, it's also where it ends. But where I differ, is the why? and what to do about that. They are all coping with their situations and God I admire them for that because you see, I can't spend my life just coping, and that's what has sent me on the mission to find out the why? you see, when you know that, sort that out, then your situation is changed - does that make sense? Anyhow, they have a great resource of books, so I turn up and borrow them.

So, I had borrowed a book just before the summer, and needed to return it, and on the day I turned up, they were doing a show and tell, where anyone confident enough told their story. By the end of it, I felt so sorry for these women ( where are the men?) just as I had at the early bird session I attended at the beginning when Ed was newly diagnosed. None of their children were in special schools, and all their woes were from lack of understanding from school - and lack of their understanding that schools just aren't geared for their children. Their children weren't half as mad as Ed, they didn't have half the problems I have, yet, I felt sorry for them. Ed is 'bad' enough to warrant a place at a special school where he gets all the understanding and support the state can provide, their children slipped through the cracks, and ended up at schools where they are causing havoc in the classroom and then bringing that home - but are just about coping with the academic burden. So, this Wednesday, this lady plain out asks for help. Her son has just moved up to secondary school, sounds like a nightmare, has put two children in hospital, she and her daughter are scared of him, he barley sleeps and is in a constant state of agitation, yet all the professionals have nothing to offer - except pharmaceutical products. And she isn't willing to give them to him!! So here is her dilemma, there is obviously something wrong with her boy, but until she knows what it is, she has nowhere to start to help him, and she has no idea where to turn for help because she has no idea what it is that needs help, a vicious cycle if ever there was one.

When Ed was two and a half, he started pre-school at the same sweet place I had sent Tom. He was a nightmare to leave, the staff had to peel him off me. He rarely settled, I remember turning up an hour early. I was going to have a walk, but when I drove into the playground, he was stood by the door, just looking out for when I arrived. There was also a time, he got the key and let himself out, thankfully, another mum found him and brought him back inside! He played with the toys in an inappropriate way, was unengaged with the staff and children, was completely non-verbal (except for no and mum) and it was obvious that all was not well in his garden. It wasn't till he was just gone four that we had a diagnosis, though looking back it was as plain as the nose on my face. It wasn't till I said to the paediatrician "Do you think that he could be autistic" that she replied 'Well if it looks like it and smells like it, then it probably is" and that was that, diagnosed and rubber stamped and all the services that he had needed from the get go were in play. Now sure, that word brought me to my knees, or rather the 'its genetic, he'll be like that for the rest of his life did,' and I spent the following months weeping on the sofa - but! It gave me answers. When he melted down at the playground I could say to the disapproving faces 'Sorry, he is autistic' and those faces changed to understanding. I could do the same in the supermarket and so on. The label also, when I was ready to stare it full in the face, gave me a place to start. Any weird behaviour he had like toe walking, went into google 'autism and toe walking' and so on, till I reached that place where I finally feel like I KNOW what happened, what is happening to him and what I can DO to reverse it - which is what I have done. And while he is still as mad as a box of frogs, he is a million miles away from the poor little thing he was. And every now and then, I am getting little glimpse. You know this week, we haven't had an angry front door slam, the telly slam, he hasn't hit anyone, and last night - please God don't jinx this - he slept right the way through and woke up in his bed - happy.

There seems to be this 'thing' that labels are bad, but you know sometimes, labels are good. As long as the label isn't written in permanent marker pen, they can be really helpful for all of us. x

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