Wednesday, February 29, 2012

Goals and how we try to reach them...

This question was asked yesterday, in a fantastic online support group for ASD families- How do you talk to your child and siblings about their autism, if at all? 

This is a significant issue in our house at the moment because both ASD kids seem to be going through really obvious social awkward stages at present. Here is the answer I posted:

This is a hard one for me, and I find it more difficult the older they get actually. I absolutely HATE pulling out the "you need to be aware of your siblings 'disability'" card on my kids. I try to talk about it only when everyone is calm and not in the middle of an argument/misunderstanding, BUT invariably it gets brought up. They say things like "just because he has Aspergers...." and it's always a complaint about how unfair it is to them that the sibling is different. It does my head in some days. It's a raw topic for me at the moment because of a huge fight between my 2 boys that involved throwing metal trampoline legs at each other (!!!). Previous to my recent frustration about this topic, we hadn't had to talk about it much for ages. Before that, when the boys were 8 & 9 we had to discuss it as the younger one (NT) was growing up socially faster than the older (AS) and it was getting obvious to them both. That was hard too because AS boy felt dumb and friendless and NT boy felt confused and guilty. SO difficult. Anyway (putting on my trying to be helpful hat now!) I try to talk in terms of explaining each child's experience to the other to try to encourage empathy. We never talk about disability, only differences, and for every negative we must mention we also mention a positive. We talk about the difference between a reason and an excuse and make it clear that nothing is an excuse for bad behaviour. We talk about how sometimes the consequences for each child might look unfair, but that they need to trust that I know what I am doing and that things are dealt with fairly in respect to each child's abilities. We also talk about how we shouldn't judge people who have different experiences than us because we can't understand why they do things if we aren't them. Of course, these conversations have to be age appropriate and look very different if aimed at my 16 yr old than my 6 yr old! It sure is a tough one though, and I'm certain later on I'm going to realise how many mistakes I've made in this area.

Since posting that answer the topic has played on my mind a lot, and it kept me awake for a while last night too! I came to the conclusion that as hard as I try there is no way I can possibly get this completely right, and I went to sleep. But I'm thinking about it again today! 

There is a branch of psychology that employs a technique called Narrative Therapy.  Narrative Therapy talks about dominant and alternate stories. The dominant story is the one that we focus on and talk about and reinforce in our lives. It can be for some a very negative one that has unpleasant expected outcomes based on remembered negative experiences (real or perceived). The alternate story is one that the therapist helps a person draw out of their memories by revisiting good things that have happened or been said, successes achieved, and the like. It is of course, much more complicated than that, but for the purpose of you understanding my thought process that should do!

Even though it irritates me that my "normal" kids feel grumpy/resentful/inconvenienced by the complexities of living with the ASD kids, I totally understand their viewpoint. It does suck. It is a bit unfair. I get that. But there is nothing to be done about it. And as hard as I try I can't make it any easier for them really. I can attempt to help them understand each others viewpoint, and that is about it. The fact is that ASD is a reason for a lot of things in our household. But it is still not an excuse to be used when things are hard. The goal for all my kids is the same, ASD or not. I aim for them to be able to live well without me by the time they are adults. This requires different strategies for each of them. For my ASD kids it will require them to deal with their ASD and the challenges it throws them in ways that are socially acceptable, regardless of how I feel about social norms and their cruelty. I just hope that in my efforts to achieve this goal for all my kids I end up with ASD kids who can deal with "normal" people well and "normal" kids who are better at dealing with different people better than the average.  I try to achieve this by attempting to draw out that alternate story for each of my kids. That is why we mention a positive for each negative- more than one if we can. We talk about our successes. We discuss what went wrong and frame that discussion within the context of putting together a plan for how we can make things go better next time. We remind ourselves and each other of the things we did well and how we felt proud of ourselves. 

I am determined that the story many expect to be told in the lives of my kids will not be the one I see. I plan towards achieving an alternative story- one where my ASD kids learn all the skills they need to have to enable them to go out and live independently, to have a job that they love, and enjoy mutually beneficial relationships with others.

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