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Tuesday, 29 April 2014

Party time autistic style!

Last year I heard a talk by an non-verbal autistic man. He introduced himself as being non verbal by nature, but he had been told that what he had to say was of interest, and so was happy to share. I am so glad he did, one of the things he said was a typical greeting between 2 autistic people would be to totally ignore each other. That meant that they were each totally comfortable with the other being there. They felt no need for small talk, or any of our social routines. If they weren't comfortable that's when the bad behaviour would come in.

So because of various Edward related issues, we were a bit late to the party. I am so glad we went, because out of the 15 invites, Harry only had 2 friends turn up. They had 3 replies and 1 no show. I am sure this was more of an issue for his parents, because Harry happily played completely independent of his 2 friends, and his friends did the same. They must have only just put the sand out because it still had the moist quality it has straight out of the bag, and Harry was quick to scatter it all over the garden. Edward found the trampoline, and the other boy (how awful - I have forgotten his name!) never left the side of his parents. Harry had a little sister who had a friend over, and she was just as sweet as can be. The parents all spent the afternoon apologising for their children, and the children just did what ever they wanted in their own orbit, other than the sister and friend who played fairy princess. I was so proud that Ed sat and ate some tea while the others ignored it. Over tea and cake we discussed their eating habits, and they were both on the beige diet. I didn't get all alternative on them, because I am beginning to see how unusual I am that I think I can change it. Anyway, Ed ate his tea and then disappeared upstairs and found the hoover. Harry kept taking me by the arm to show me that he wanted me to sweep up all the scattered sand, which I did, and he immediately scattered it again, and then I had to sweep more up and it went on like that till Ed found me walking funny. I knew immediately he needed the toilet which had a lock up high so Harry couldn't flood the bathroom - again, otherwise he would have gone by himself. When we got in I found that Ed had done a pooh in his pants, so thank God for clay because at least it wasn't a runny smelly mess. And so that was our party, 3 apologetic parents, 3 unconnected boys, 2 fairy princesses and 1 pair of pooh pants wrapped up in my handbag. And you know what, I had a great time. Sometimes it helps to see the cards other parents have been dealt, and its always nice to get out and do something normal with him.

But you know the 12 invites that hadn't replied have been eating at me. I just can't figure it out, why would you not even reply? The other family at the party lived in the same village that Ed goes to for his holiday play scheme, and I can tell you those ladies have saved my life many a time. They were unaware that there was even a scheme that would take their boys, and it reminded me of the meeting that I went to where I was the only parent who turned up, 1 parent, 3 professionals. It was there I found out about the play-scheme to include disabled children. As I told them about it they all made up excuses why not to send their children, that they were to difficult etc. And I can't figure it out. And then in the news recently there was that tragic family where the mother has been charged with 3 counts of murder on her disabled children. And I think what it is is that we are drowning not waving. That families with disabled children are so stressed, that the least bit of movement out of their comfort and routine is so stressful that they can't cope. And so their homes become their world, and everything shrinks down to just getting through the day. That I can understand because I was there not so long ago. When your ship sinks you have the choice to sink or swim. The woman who killed her children sank, the families behind closed doors are swimming, and I couldn't face either so I made it to a life-raft. With Gods blessing we will make it to the Island.

So how did I do it? I made the decision to make a change, and I am not alone. Last week I went to a treating autism coffee morning. I thought that it would be full of helpful advice, but most of the ladies were still battling with their children's condition. I had come across a couple of supplements that looked interesting, and this one lady had tried them all and none had worked. It hadn't put her off keep trying. I drove home quite down, can I really do this? And then it occurred to me that while her child may not be a-typical now because of her interventions, she is probably better than she was. Ed is still quite bonkers, but the madness has gone, the self harm has gone, and in his good moments he is a happy, funny little boy, and that is something he was not before. Small steps, small changes in the end will add up to big changes. In the meantime, my heart goes out to that poor mother who saw no other way out other than to end her childrens' lives. Because, truly, until you have walked in her footsteps you can't judge, and for all my brave talk, I would perhaps have done the same thing put in the same situation. XXX





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