Affirmative action

My wife is a woman on a mission. Dissatisfied with waiting for September to roll round before B gets some support, she has taken it upon herself to learn how best to help him. Since getting the diagnosis, there has been a remarkable lack of… anything really. SEYS are still involved, as are SALT, but have not recently carried out observations or made appointments. So you get the diagnosis, your lives take a knock, and then you’re left to fend for yourselves. No one tells you what to do next or where to look for help. Come September, Autism Outreach will be involved and the school will take over B’s IEP. But for now, there’s this big silence.

In truth, we are desperate for help. Getting a diagnosis changes how you look at things. The rules are changed. With a child who thinks, learns and behaves differently, raising them is different. We can’t expect to be able to do what we did with our older son. So how do we go about raising an autistic child? What do we do between now and September to prepare him for school? There’s no one there to tell us what to do. Parenting doesn’t come with a handbook, I know, but this is another level of parenting. We can’t sit back and wait for support that might not actually ever materialise.

Perhaps it’s a coping mechanism, but feeling we are doing something, being pro-active, is vital. Hence my wife’s recent efforts to get things moving. It’s been good to see her move from being devastated and a bit beaten, to being determined and strong and, as I said, on a mission. So far the ‘mission’ has mostly involved looking into ABA (Applied Behaviour Analysis). It seems that every time I check our email, there is another ABA book on its way to us from Amazon (this is probably an exaggeration). There are books on ‘Son Rise’ and dvds from people we know with autistic children. Today, she made many phone calls to many different organisations. She received an email from The National Autistic Society with 22 attachments. There are messages on the answerphone. A great deal of effort is going into doing something to give B the best possible chance at this stage in his life.

As I write, we are very much at the finding out stage, particularly about ABA. I will, I’m sure, write an entry about it at some point soon, but for now we’re still learning. Last week I read my first book on ABA that ‘demystifyied’ the jargon involved in the therapy. Actually, it re-mystified it for me. I feel more confused than when I started, but that probably says more about me than the book I read. We have a lot to learn but are keen students!

Your kids are, of course, the centre of your life. But now I feel so much more of the focus of our lives is on our son. This is how it should be. He needs us and we will do everything we can to be there for him. There’s still the balancing act of our working lives and our personal lives to manage. Neither of us has been at our best at work recently, I suspect. Work is important but it is not what is most important. My wife’s focus and determination is inspiring. B is a very lucky boy, as am I.

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