Thursday, 15 August 2013

for the newly diagnoised

As we are coming to the end of summer, we seem to be plauged by wasps. I just had the wasp man out about 3 weeks ago to get a nest right under Toms window, they were getting in under the lead flashing and at night when all was quiet you could hear them eating away at the ceiling. I thought it was a neighbour who had another nest, but no its us again. This time they are in the roof and back under the lead flashing. So anytime we leave the back door open in they come, big nasty things that kinda face you down. I have a technique where I summon up the godess in me ( a technique the dog whisper uses!) and shout 'out!' at them pointing to the door. Mad as this seems, it works 9 out of 10 times. Yesterday I was there in the kitchen shouting 'out!' in my most commanding voice, when a little peewee voice starts up. It's Ed, saying out and pointing at the door! He was copying me, and I really felt a connection with the little chap. Generally he suits himself, we all fit in round him as he wanders round in his own little Ed world filled with all the mad stuff he likes and does. But for that small moment we were together 'outing!' a wasp, and I felt like it was another step forward for him away from the nightmare place we started from.

One of the men that Richard works with asked him if I would mind speaking to a friend of theirs who has just had their eldest child diagnoised at two and a half, they have just had another baby. In his words they are 'devastated' and he wondered if I could help them. Of couse I said yes, though I doubt they will contact me. I spent the last weekend wondering how was the best way to go about talking to them, and remembering how it was for me, and even though its a few years ago and we are on a road to recovery, I don't mind telling you the tears flowed again. How do you tell someone to kiss the life they once pictured for their child and themselves goodbye and face down the spector of autism? How do you tell a young mother with a new baby that she is going to have to dig so deep that there will be little left of her, that she has the fight of her life on her hands - that she has to fight it and win it? How do you do that and give her hope that it can be done and it is within her to do it? Well I have been pondering that for days now and still have no answer, but these early weeks of having a diagnoisis I think are so important. Its a time of greiving for the life lost, and planning for the life given - and there is no doubt in my mind that the 'state' needs to do so much more at this time than they do at the moment.

I absolutley believe that we are all stronger than we can imagine. I always knew I was a strong person, but autism has shown me just how strong I am emotionally. Ed is fiercely strong physically, I often contemplated what made him SO strong and my conclusion is that he doesn't know he is not. Because he doesn't think like us, if he wants to move something he does it without thinking that he can't. Have you ever watched the pictures of those great big men climbing Mount Everst, and how pleased they are with themselves? Have a look behind them and you will see men half their size climbing that mountain with a mountain of gear on their backs that those great big fellas are unable to carry. How is this possible? I think it's just because they believe they can do it and those big fellas think they can't. Henry Ford had a saying "If you think you can do it, you probably can. If you think you can't do it, you probably can't." In those wise words you have a blueprint for life. Because most medics think that autism is genetic, there is nothing to be done about it. Those that do nothing, get the same back. Those that believe they can do something - and do it, get something back. Its all in your attitude and action. So, my advice for newly diaganosed is 'Educate yourselves' there is a lot you can do, but what you do needs to suit you and your family and the needs of your autistic child - which just to make things more difficult, are all different. And in your quest for knowledge, don't just believe anything, test it. Does it make sense, does it feel right, does it make a difference, and if so do it. Pray for guidance, this thing has come to you and you can find a way through. You know this week has not only seen Ed "out!" a wasp, but he has started singing, the noises are the same that you'd expect from a baby, or maybe a zombie movie, but there is no doubt that he is singing. Can't wait to hear what he has to say. x

PS Spell check isn't working so sorry for the mistakes x

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