Friday, May 13, 2011

A late Mother's Day wish...

After almost eight years of being a mother, I've had lovely breakfasts in bed and chocolates and magazines. This year, I have a couple of other wishes.

There's rarely a chance to express wishes like these, and I know I'm preaching to the choir here, but just in case anyone's got a giant glittery wand, here goes.

Living a life with autism means that other people's behaviour has a huge impact on you. Not just in that, 'wow, what an obnoxious family' kind of way - in an actual, screw your entire day, give up your plans or endure a truly crapola experience kind of way.

So, in the spirit of including people with autism in your behavioural code... here are some suggestions I have for the neurotypical among us. I am going to try to be pleasant about it, but seriously, some days it's like being forced to spend time with the leader of the political party you don't vote for. It saps our faith in the future, and sucks every last moment of fun out of the present.

1. In public, deal with your crying child
If you choose the 'cry it out' method, you are made of stronger stuff than me, that's for sure. Please, though, do it at home. Do not walk away from your crying child at the supermarket, in the park, at a theme park. Why? Because me and my autistic child are somewhere around you, and we have spent two years building to the point where we can be here. It has taken a lot of time/therapy/reparation/courage/learning from us, and one hysterical child is enough to send us backwards. Not only is an uncontrollable crying child going to end our visit today, it's likely to stop us from being able to come back here for a long time.

I get that you need to handle your child's behaviour too. I totally understand that kids are challenging and you are trying to make the right choice to end the unpleasant behaviour. But if you can, put the needs (even the needs you may not anticipate) of those around you ahead of your own frustration. Find a spot away from the crowd to talk to your child, handle it at home, talk to a behaviourist... it sucks, but it will not only help you and your child, it will protect your fellow park goers/shoppers/fun seekers.

2. If you have a dog, train it.
Superman had cryptonite. Many, many autistic people are debilitated by barking dogs. Some with just dogs in general. For us, it's the noise - surprise! Barking dogs annoy most people. Barking dogs turn my child catatonic - frozen to the spot, crying, hands over the ears, likely to run in the opposite direction even if that opposite direction involves four lanes of speeding traffic.

It is not OK to let your dog bark uncontrollably. It is not good for your dog, and it's not good for those with the misfortune to be near your dog. Train your dog, socialise your dog, initiate strategies to keep your dog amused and engaged when you are out, block your fence so they don't bark at every single person who has the audacity to walk past your house. It is possible. There are trainers that can help. It could make the difference between alive and not, for a person on the spectrum.

3. Cough quietly if you can.
Winter is approaching here in Sydney, and with it comes the inevitable coughs and sneezes. It's totally understandable, people need to cough and sneeze when they have a cold. Sometimes, people need to cough and sneeze when they don't have a cold.

Now, we can do something about avoiding the babies and the dogs, to an extent. We have become masters of holding in/masking/re-directing our own respiratory expressions, without blowing out our eardrums. We cannot avoid the sudden cough or sneeze from someone else. If you are someone else, is there any chance you could reduce the volume of your coughing? In the spirit of reducing the spread of germs, if nothing else. Cough into a handkerchief. Sneeze into a tissue. Use your sleeve. Use your breath control... keep it to yourself. It's a natural biological reaction, I get it. But it doesn't need to break the sound barrier.

As I write this, I know it sounds whiny. It is whiny. But it's our life. It's the one thing that's hard.

Billy's repeating is handleable. His need to charge about and crash into things for some part of the day is fine. The flapping and the occasional toe walking, no problem. We are developing some great strategies to help him learn easily, we're working on the gut issues with some heartening early success, we're building a bank of great friends and social strategies.

As a parent, though, it is not even remotely pleasant seeing your child shocked into tears multiple times a day by stuff he can't either control or anticipate. It makes it even harder when you realise that those things can be controlled, to a degree, at the source.

Now that Billy's able to reflect and talk about his interactions, it's hard to not speak out with him. He says hearing a dog bark is like being hit in the side of the head. He says the worst part about kids crying is that they might never stop. He says coughing hurts his ears like when you fall over and cut your knee.

I'm thinking, it wouldn't be OK to deliberately hit him in the head or push him over, so it shouldn't be too hard to try and control the volume of the sounds he hears.

I understand this because I am his mother, and I know I can't expect the whole world to 'get it'.

And even if you don't get it, feel free to give me the chocolates anyway. I'll share them, I promise.

1 comment:

Lisa said...

Oh gawd. What if they're in the same house? What if Child One wears a t-shirt saying 'The sun is trying to kill me' and hides from noise, and Child Two has 30 minute screaming fests if you say No when he wants to do something?

I'm amazed I survived. But I did.
Child One is now better at choosing when to leave, and Child Two has learned to use regular-volume words when the world is against him.

A very spacious house helped.
Leaving the house was not really an option - for either child. Dealing with both their needs in public was just unimaginable.