A moment that for me was a big slap in the face, came when difficult child 3 had just been tentatively diagnosed (he was barely three) and we finally had a piece of paper to begin the process of application for an aide in pre-school. Normally it takes months or more - you have to apply the previous year to have a chance. But a boy who had funding, was moving interstate. This boy was a neighbour or ours, a lovely kid who had been perfectly okay until an accident left him brain-damaged. I had been there supporting his family since the accident; we were friends, had welcomed them when they moved in to the neighbourhood. I was chatting to the mother and told her how her son's aide would continue to have a job, because the funding was being transferred to difficult child 3 when her son left. He had funding in place for his new placement, all was okay, I thought. Then this mother turned to me. "Don't worry about your child," she said. "There's nothing wrong with him. He's just a naughty little boy."
There was nothing I could say. Her son's disability was profound, but I had been one of the first to identify that he was intellectually unimpaired - the boy was locked in, doctors were despairing of his chances and whether it was worth trying to help him. I helped her fight for him. I couldn't say anything and she drifted away, unaware how much she had just hurt me. I never did tell her - she had enough on her plate. Normally I would have defended my child. But coming from her - first it was a shock, then it was, "How can you say anything to HER? After all she's endured in the past year?"
Looking back, I tell myself that she was trying to make me feel better, to tell me not to consider my son disabled, but just that he was being a bit stubborn. English was not her first language and she had been more immersed in her first language since her mother came to stay to help. The boy had been bilingual before his accident, then lost all his English, which is why doctors had considered him unresponsive. What were my concerns compared to hers? How could she understand, when she was dealing with profound physical disability in her son, that my boy, who could run around and climb trees, could not relate to other kids as well as her boy? Her son was completely aphasic, but he had language. He had regained his English (or relearned it) and was responding appropriately in social situations. My boy was echolalic and could not interact with other kids in anything other than running around; could not sit still during story time or sleep time or table tasks; the one thing her boy and mine had in common, was love of computers.
Sometimes there is nothing you can say.
The only other time I've had anything close to this level of slap in the face, I have been able to respond. One day at an after-school sports event, the kids were unsupervised and running amok. There were parents there doing nothing. I chided a group of kids who were in the toilets stuffing them with paper towels and flooding the place with water, and a parent walking past told me to look to my own kid who at that moment WAS behaving; she said I couldn't be critical of other kids if mine was such a problem. "Let the kids enjoy themselves," she said. "Any problems - they'll fight it out amongst themselves." Again, this was from a woman I had been friends with since our older kids were babies. Interestingly, in the years since, her sons have been a huge behaviour problem.
My response this second time - I knew her well enough to not bother to change her mind, but I did say, "I cannot let difficult child 3 loose around such behaviour. He does not understand and when he tries to join in, he makes a mess of it. I will be spending my time with difficult child 3 watching the match from the other side of the field today."
Something I realised early on, is our kids have a higher standard of behaviour to adhere to. And it is not fair. I have said this to my boys - "the world will not give you the breaks that it gives to other kids. That is not fair, but you do have to live with it, so accept it. Just make sure that you work harder than the other kids, to ensure no blame can be applied to you."
I am now noticing this in my dealings with adults with Asperger's - they tend to be more scrupulously careful to avoid giving offence, they tend to be more correct and sometimes formal in their social interactions and conversations. They rely on logic in arguments and scrupulously avoid personal attack and invective, even where it has been directed towards them. They feel very exposed when they reach out to other people and can be easily put off if it backfires. Tomorrow I have to cooperate with an adult Aspie bloke who is just like this - we have to work as a team but also do it with no advance planning together. But I know him well enough to know how he functions, and I am confident it will go well.
So there is hope - as they grow, they can turn into wonderful human beings. It's just getting them there that is such a huge task!
Marg