One year on

It has been exactly one year since the word ‘autism’ was first introduced into our lives. Not that the ‘a’ word was actually mentioned- instead my wife was told, ‘he’s in a world of his own’ by the pre-school teacher. We knew exactly what she meant and we knew it straight away. I think that most parents with even the most basic awareness of autism can spot the significance of those words. And dread them.

It’s a good time then, to reflect on the last year. There have, of course, been low points. The diagnosis, the struggle with SALT and school, the MRI results, generally coming to terms with things. Last Christmas day was awful. Family life has been strained. Our marriage has suffered. Crying in the middle of a full staff room at work was a pretty miserable moment for me. And of course, there are the day to day difficulties of raising a child with special needs. B is making progress with his speech and many other aspects but in other ways becomes more autistic every day. I’m still a long way from being the father to him that I need to be. Autism gets the better of me sometimes.

Having a child with a special need has impacted on our lives in lots of ways. I don’t think it would be an exaggeration to suggest that my wife and I almost constantly think about our son and his autism. It’s with me from the first scream in the morning, it’s with me at work throughout the day and it’s with me at night when he’s tucked up in bed asleep. It has pretty much defined the last year for us. It consumes you and defines your life, I think. Where we go and what we do has also changed. B’s needs have to be considered before we head out anywhere and there are certain places and activities that are a no go. We see virtually no-one beyond immediate family. Friends with neuro-typical children are difficult to cope with. I have a friend at work who often tells me about the wonderful things he does with his children. Things we can’t really do. That’s difficult to take.

But I’m not writing this to dwell on the negative aspects of the last year. In many, many ways we have reason to feel positive. Finding out B was autistic did not destroy us. In fact, it brought out in us a strength and an ability to deal with things that I did not know we had. We stepped up. We did everything we could to learn more about the condition. We pushed for a statement even when met with resistance. We pestered and pushed the authority and agencies until they got their arse in gear and provided for him. We fought with the school to let him attend full time. we got the 32.5 hours statement. We got DLA and a blue badge. It sounds like I am boasting but I’m not. I feel proud that we have been able do things for our son, because if there’s one thing that autism does, it’s make you feel useless. I realised relatively quickly that looking for a ‘cure’ for autism was not going to happen. I think you have to accept, quickly, that things are going to be different for your child.

I think we’ve learnt a great deal. Getting the diagnosis certainly helped me to be more tolerant and understanding of my son. I wouldn’t say it was a relief exactly, but it helped explain so much and gave us a focus for moving forward. I wouldn’t claim any sort of expertise on autism, but I’m a long way from the person who wrote ‘What I know about autism’ on this blog back in February. It has helped me understand better the young people I work with too. On the downside, I learnt what a pain in the arse it is to get the right support and the hurdles that have to be overcome in doing so. I’ve learnt to trust my own judgement more too.

I find it easier to look back than to look forward. After the birth of my first son, I found myself thinking often about the future. I had never really done this before, but having a son made me think about all the things we were going to do and all the possibilities life had. Since learning my second son is autistic, I have not been able to do this. I try not to think too much about the future at all. This leaves me open to accusations of burying my head in the sand, but it’s my way of coping. My wife is quite different in this respect. I think her tendency to think about the future has made the situation more difficult for her to cope with. She’s probably much more of a realist than I am, but we all have our own way of going about things.

I prefer to stay in the here and now and just concentrate on what’s going on. I’m at my best when I feel like we’re doing something positive to help B. I think we’re good parents. I certainly don’t think I could love my children any more if I tried. We go to great lengths to do the things that they love and enjoy and are good for them. I think there’s plenty more we could do though. We’re guilty of being over reliant on the tv, DS and Wii to get us through the day and should be doing more focussed activities that help B develop. We’ve been making the effort recently to have family time each day, when we do something together like a turn-taking game.  Most importantly, I think my children are happy and cared for.

The photograph at the top of the page is of a picture that hangs at the foot of my bed. It was given to me by my mother and it was only when I hung it up that it took on a kind of meaning for me. In the foreground, the trees are not too dense and the way through them looks manageable. If you look ahead, the path seems darker and almost impossible to get through. But it’s not. It’s just the same. When you’re there you can get through it, so worrying about it too much is pointless. You’ll be alright when you get there. That’s how I see our situation and that’s why I focus on what’s happening now, rather than worrying too much about the future.

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4 Responses to One year on

  1. Spectrum mom says:

    It will be two years since diagnosis for us on May 28, 2012. We have had a lot of things happen since he was diagnosed. We have learned what a lot of his triggers are and how best to calm him. We have gone through therapists and MRI’s and various other tests. We are in fact products of tv, wii, computer and iPod parenting too. They allow us to communicate with our son who has difficulty communicating even though he is verbal. The first year was the hardest for us.

  2. V says:

    Irony here is that before you commented on my blog I had read yours during lunch and planned on commenting tonight when I put the kids to bed!

    I know how you feel. I used to think about the future and what it would hold for him. Now I stay in the moment. I try not to plan or think about things too far in the future. Once I thought he would play ice hockey with me, but now not so much.

    I’ve heard that the first few years after diagnosis are the hardest and I’m apt to believe it. I’m in the same situation that I rely on other things too much to get us through the day. I want to do more and maybe doing something like you are doing might be helpful to us too.

    Also one last thought. Congratulations on making it through the first year! From what I’ve read you are doing great with B in helping him as best possible at home and school!

  3. Special Needs Mum says:

    You’ve done a GREAT job. NEVER think anything different. A child’s diagnosis is a huge readjustment in parents’ expactations and dreams for their child. I’ve been through it twice but lickuly, my boys are both high-functioning. It’s still early days for you. Look after yourself and look after your wife because if you are both too worn down, you can’t give the best to your children. There are places that you can go where your autistic child will be welcomed such as The Thomas Centre http://www.thethomascentre.co.uk/ Well done for all your hard work for your son

  4. B's dad says:

    Thanks for these words of support x

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