Wednesday, 14 August 2013

Reasons and random thoughts on diagnosing

I often get asked why we have sought a diagnosis for each of the boys, so in this post I'll explore our reasons.  But first . . .

A lot of people bridle at the thought of "labelling" a child, and their reactions to seeking a diagnosis are tied up in their idea of labelling.  I have an issue with this.  A BIG issue.

The idea seems to be that labelling a child (or person) is inherently bad, and part of that is the idea of a label.  We label things, and then look no further than the label.  To suggest doing that to a real live human being is wrong - BUT (and it's a big but, which is why it's in capitals) that is really not what is going on.  If a person looks at a diagnosis for a child and assumes they know all they need to then the person is in the wrong - not the diagnosis. 

With or without a diagnosis the difficulties, differences, uniqueness's that my children have will still be an inherent part of them.  If those things are unnamed, undefined, unacknowledged it will not make life any easier for the boys, but it may make it harder - for both the boys and those who help them.

A diagnosis is a starting point for leaders of clubs the children go to - it should make the leaders take extra care, extra time, have extra patience.  It doesn't always work like that, but having a diagnosis will let us pull the leaders up short, get them to look at their policies for SEN, and make allowances.

A diagnosis is also a direction to look in for me - it gives me a starting point for information, strategies, support.  It lets me network with other parents, to hear what worked for them, to feel less alone.

A diagnosis is also an explanation for the boys - it has helped L and M to have an idea of what is going on, to understand why they find certain things difficult, to get to grips with differences and challenges.

Eventually a diagnosis should allow us to access help for the boys.  Already L has had "special arrangements" for his exam - extra time and the use of a PC to record answers.

I also hope - perhaps in vain - that a diagnosis might help soothe extended-family tensions, and help them to be a bit more forgiving of my children's difficulties.

I often read that home educating families don't see a need to pursue a diagnosis, that they just bend around the child's differences and go with the flow.  For a long time that was how we did things, but eventually we needed to step beyond that.

With L the need for a diagnosis didn't come until he wanted to do an IGCSE.  We knew there were various accommodations that could be made for his difficulties but we needed an "official" diagnosis of dyslexia in order to access them.  It was pretty straight forward to arrange, we asked the school that he was sitting the exam at (as an external candidate), and they did the rest.  It was no surprise to any of us when the dyslexia was confirmed, but I think it was rather a relief!  Whilst we had "known" for a very long time, there was always a sneaking fear that we were wrong, now it was there in black and white. 

For M we felt the need to ask for help.  Purely and simply we felt out of our depth and that we had done as much as we could and now needed a more expert opinion.  A big driver of that was the fact that we could see lots of indicators for many different conditions, some of which required routine, others spontaneity. There were conflicts in how to deal with things and we just didn't know which way to jump.  At the moment we are still working our way through this process, but we are looking at a whole host of different disorders, so it's no wonder we were confused!

Lastly we come to J.  We had tried to get J assessed previously, but we didn't end up with a diagnosis, just a "not Autism".  The more I read, the more he grew, the more I disagreed with that.  J - as far as I can see - is classically Autistic, potentially trending towards savant syndrome.  I wanted "them" to look again.  So they are.

And that's why - for us - a diagnosis would be helpful, not to limit or pigeon hole the boys, but to help us, them, and the rest of the world understand their difficulties, and maybe even find a few ways to help.

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