Ten

Anger is not a feeling I like to have, so I'm writing about it to get it out of my system. I've learned over many years, with many experiences, that anger makes you sick, and generally not a nice person. Let it go Janeaney, let it go.

Sometimes I get sick of having a child with autism. Actually, that's not true. I'm sick of it ALL the time, I've just learned to cope with it, to go with the 'cards I've been dealt' mentality, and to make the most of my special and beautiful little man.

But I defy anyone with a child who has a disability to go down the 'I wouldn't change him for the world, he is perfect the way he is' with honesty in their heart - because if *I* was able to take Will's autism away from him, I would. It's plain and simple. For him, for me, for a taste of 'normality'.

Please, no questions about what 'normality' is. I'm not talking about the minor differences between people. I'm not talking about the old 'Yeah, but what is 'normal' anyway?' kind of philosophy.

I'm talking about what we all know to be normal

I'm talking about taking an eleven year old to KMart to spend his birthday money WITHOUT the risk of him going into an absolute meltdown, threatening to kill and hurt me, then attacking me with his nails, then screaming obscenities at the top of his voice, then screaming and crying about how he wants to kill himself as he feels the remorse of his actions and can't understand why he explodes like he does. All in the middle of our local KMart/Coles complex.

I'm talking about NOT having to remind this eleven year old child to say 'hello' when he walks into someone's house, and 'goodbye' when he leaves someone's house. I'm talking about not having to finish wiping his backside after he has a go, because he is so paranoid about the leftover 'mess' that he can't reach or whatever it is that he's worried about. I'm talking about not having to convince him that he even needs to go to the toilet in the first place, after a five day hiatus while still being on treatment for his constipation.

I'm talking about the repetitive playing with something that spins. Most of the time I can cope, sometimes I just think "Will you stop spinning that goddamn thing just for a minute", but it relaxes him, it fulfills some kind of sensory thing for him, so I learn to deal with it myself, because I know how he will be if I deprive him of it.

I'm talking about not having to be one step ahead of him ALL THE TIME, in regard to what may set him off down a path of anger, screaming, swearing, and (as was yesterday's case, albeit a rare occassion) physical violence. All at the age of eleven, which when seen in public appears as nothing more than a spoiled child whose mother is hopeless at controlling her kid.

Oh yes, I WOULD take all of that away....in a blink.

There is a story that many parents of autistic kids know, it is a parable of sorts, where a woman talks about her trip to Rome, and finds out that she's on the wrong plane and ends up in Holland. She's really disappointed at not getting to be where she wants to be, but in time learns that Holland is a beautiful place and comes to appreciate it for what it is. So she missed out on Rome - so what? Holland is beautiful, and she is grateful to have experienced the things she wouldn't have had the chance to experience in Rome.

The analogy (if you haven't already seen it for yourself) is that those of us with kids with a disability have not been given what we had expected - 'perfect' children - but that our experiences with our special kids are wonderful just the same, and that sometimes we experience things that other parents don't. Such as first words etc, which can sometimes be taken for granted I guess, when the milestones are reached at an appropriate level. Or toilet training or whatever. For us, these are huge events, they are also very joyful.....but it's tiring that it has taken soooooo long to get there, and the hard work that goes with it.

I do love my special man for who he is - he does have a great sense of humour, and the fact that he takes everything so literally is often cause for laughter. He brings me much joy, there's no doubt about that.

But after days like yesterday, I really do wish to be able to just take him somewhere without feeling stressed, without walking into a room and checking out the lighting, or the crowd, or the level of the music. Without wondering who in the room, or in the public area such as the shopping centre, will judge him (or me) this time. Without having to watch as mainstream kids shun him because he is just that little bit different.

I love him so very much, as a mother does, and I guess this is also why I would take his autism away if I could - it's so hard to see him suffer as he did yesterday, feeling horrible about what he did and how he acted. But I was a prisoner too - trying to teach him right from wrong, trying to explain that the emotion he was feeling was remorse, but knowing somewhere deep down that he just doesn't get it, or have the ability to always control it. Trying to teach him what may be the unteachable.

Lately he has been saying "I just want the anger to stop Mum", and it breaks my heart.

I want it to stop too.

Talk tomorrow (Happy Fathers Day to any of the dads reading this)

Janeane
xx