Friday, March 01, 2013

Systems which encourage failure...

In the process of getting a child evaluated for a behavioural disorder, professionals like to interview the child, the parents and also the child's out-of-home care environment; being it a childcare centre, school or high school, or even extra curricular activity provider. The purpose of this is to show a pattern of behaviour over a range of environments.

I think this is probably best practice, as it rules out some environmental causes, sometimes. However, we have also come a cropper of this.

When Erik was eight and we first sought an evaluation, we were given a survey to give to his teacher to fill out. We had a problem in that his teacher at the time was actually a temporary stand in for his usual teacher who was on long service leave for a term. The stand in teacher had the attitude of not wanting to 'label' children. We had already encountered this when two children attacked Erik in the school yard, and we asked the teacher to investigate and found out later that he had not sent the two child attackers to the principal because, 'They're up there every day, already.' We were outraged that nothing was done about the attack against Erik.

The teacher filled out the form and marked all of Erik's behaviours as being within the normal range of behaviours in class, when we knew categorically that Erik was distractible, had a tendency to day dream, was not able to follow instructions, was slow to start activities and rarely finished them in time. These were issues his teachers had repeatedly mentioned to us.

Because the survey from the teacher and the one from us did not match up, the doctors evaluating Erik pretty much assumed we (his parents) were the one's with the problem - that we had low parenting skills because the teachers seemed to be managing Erik quite well.

Over the intervening 5 years, I have worked very hard with Erik. Partly because I do second guess myself and wonder if I'm not projecting, but also because there comes a point when it is easier to just manage a distracted, forgetful child than deal with the constant stream of complaints from teachers and the child labelling themselves as simply not being able to do what is expected of them.

I read an article this week about parents of children with special needs doing too much for their child. The article really got up my nose, partly because it happen to appear on my timeline on a day when I had been complaining that people often didn't realise how distractible Erik is because we - his parents - constantly remind him and manage him, and so this article felt a bit judgy about us doing this, and partly because, well, what is the alternative?

We don't make Erik's lunches for school, and we don't do his homework for him, but we do push him to do his homework, for example. We remind him, and monitor him.

We have started doing this fairly recently, we didn't used to, but then we realised that instead of learning to do for himself, he had started to simply identify as 'not able to' [fill in the blank]... He didn't strive for anything because he believed himself to be limited. Under his own steam he didn't have enough foresight to initiate goal setting or organise a plan and stick with it and he also could not see the point of doing this. He didn't know what is was to have personal success, but he was becoming quite accustomed to making excuses.

So, we decided excuses were not going to continue. Instead we made a fairly big commitment last year for him to do a painting for the local landscapes exhibition. This was part of a bigger plan to get him into a high school he didn't even want to go to because no one he knew would be there.

Had we just left him to it with the painting, he wouldn't have finished it. He would have dropped the ball - there is no question about this. He wanted to quit many times. He fears failure because he knows it so well, but instead of trying harder, he disengages. He can be the master of, 'I don't care.' It's a defence mechanism and it doesn't serve him or encourage him.

So, we pushed and reminded and made him sit down and work, and slowly, slowly it came together and then people started to be impressed because he really is quite talented, but he didn't even realise this because he had never finished anything in all the time we had just 'left him to it'.

In the end, he had a lot of success, he won an award, and he actually wanted to do another painting. The second painting also required us to sit with him night after night, encouraging him, and sometimes getting quite terse with him because he gets so bored so easily and he still has the reflex of wanting to run from a challenge. He did finish that painting too, and sold it, and bought himself some much wanted Vans shoes.

The taste of success has spurred him on. He got into the high school, and he is so happy there and so grateful despite none of his friends going to that school. He has started planning his third painting, and this time he is taking more of the initiative because he knows he can do it! We know we will still have to remind him to do the work, and many nights will still be spent repeatedly helping him refocus on the work, but maybe a little less than last time.

There are benefits to doing for your special needs child, but it's a balance, knowing when to step in and when to step back.

What really gets my goat is that in order to get professionals to recognise that he has many challenges which will affect his adult life when we are no longer there to be his personal assistants, he cannot have success. He must be failing in all areas of his life to qualify for recognition of his disorder. We are encouraged not to help him, not to try and teach him skills to cope. If we don't though, we are also at risk of being labelled useless parents. The significance of his challenges are no less simply because we are conscientious and want our child to taste success so that he might see the value in striving.

This phenomenon is wide spread in our society - the Grumpy Old Man and I encounter it quite a bit. My brother is struggling at the moment. Things have taken a bad turn for him and he is in financial strife, but Centrelink won't see him for three weeks. He asked them what would happen if he became homeless in the meantime and the answer was, 'Oh, then we can help you straight away.' Fair enough, they need to prioritise who they help, but they unwittingly encourage people to fall apart in order to gain assistance, instead of encouraging them to pull themselves together before their need is dire.

This seems very inefficient to me. Why are people not encouraged when they try to help others help them? It simply makes no sense to me.


1 comment:

carmen said...

We have found similar Sif. Sometimes that knowledge and experience of previous diagnosis isn't always helpful.
Here's to our system getting better and parents being more empowered. x

Good Job!