The game is 'how does my kid compare to the other kids?'
Sometimes, in autism (NT) mother world, usually when one of us has a particularly bad day, the photos come out.
We share photos of our kids, especially when they were newborns. We talk about the time before the 'a' word, before we were counting words and checking waves and points for true reciprocity. We ponder the time when we clicked away with the camera, thinking our little one was just like all the other kids.
It's like ripping band-aids off or eating an entire family block of chocolate in one sitting. You don't want to do it, but you need to do it and it feels good, bad and painful on both physical and emotional levels.
I think, seriously, it's a kind of therapy we have inadvertently invented for each other. We laugh, we cry, we rage at the fates and then... we're done for a while. We climb down from the peak of crazy mummy mountain and re-join the herd.
This week, I believe I hit a turning point in myself. I think I've reached some kind of plateau, and I'm going to have to sit up here for a while. Because if I venture down, I'm likely to hurt someone.
I'd love to go into detail here and wallow in the reality of it. But I don't want to alienate people, and more than that, I really think wallowing could drown me completely.
It's about school. It's about Billy. It's about him being different (not in that good inclusive fluffy bunny kind of way we like to use that word these days).
It's about equality, and how it's based totally on the perceptions of the people with all their capacities intact, and so people with disabilities will always come up somewhere short of 'equal'.
It's about the fact that autism is a subtle companion, in so many ways.
Humour me. I promise, it will make sense (in an obscure kind of way).
It's so easy to make completely incorrect readings of an autistic child's behaviour. I'll give a little example.
BEHAVIOUR: 'He doesn't follow instructions.'
INTERPRETATIONS: 'He's being stubborn'
'He's not interested'
'blah, blah, blah'.
First, let me be clear, I'm not talking specifically about a specific Billy-related incident at the moment. But if I was, I would like someone to understand that he doesn't follow directions because the instructions are impossible to follow. Walk with me while I explain...
- He doesn't follow directions because the instructions are impossible to follow.
- The instructions are impossible to follow because they are too long.
- They are too long because they contain a lot of information that must be understood in a sequence.
- He got the first piece of information, maybe some of the second, but you were still talking.
- He tried to get the third, but you were already finished.
- He tried to remember the first one again.
- Then everybody started moving and doing stuff and he had no idea why or what.
- So, he wandered in the direction of the quietest possible spot.
- And was distracted by a puddle or a pile of sand.
- So he sifted the sand or stepped in the water, much simpler than that long string of instructions.
Following me? Keep up, while I come up with some solutions.
- Think before you speak.
- Break up instructions into doable actions - step by step.
- Write step by step instructions in the same place every time.
- Make a smaller version of those steps (laminated paper and white board pens are good)
- Give that small set of instructions to him.
- Talk it through.
- Make sure he understands.
- Make sure he has all the resources he needs.
- Stay with him if you can, but if you can't...
- Tell him you'll be back to check in.
- Make sure he has begun the task before you leave.
- Come back to check in.
- Mark off each step as it has been completed.
- Direct him to the next step.
- Celebrate each step.
- Have a party on completion.
Sounds a little intense, huh? Well, welcome to our lives.
Our lives that we share with a bright, funny, charming, engaged little boy who would still be sifting sand into puddles of water if we hadn't learned how his mind works and changed our behaviour.
We didn't ask to be here. We didn't make it happen. We are not trying to make your life hell by asking you to understand.
We are trying to direct our son towards the future he deserves.
Just like all the other kids.