Sometimes you just need a break from autism. I believe it’s called ‘respite’ or ‘time off in lieu of good behaviour’. Whatever it’s called, it’s been in short bloody supply lately. And much needed.
Forgive the cynical tone but we’ve just experienced the effects of my son spending two weeks at home, stuck in the house. Following his appendectomy, my son suffered a couple of days feeling quite unwell. This was to be expected- when my wife had her gall bladder removed in April she felt seriously ill for a few weeks. But by day three B was back on his feet and by day four was climbing the walls (literally) and feeling normal (not literally- that doesn’t happen).
Despite appearing back to his version of normal, B still had to take it easy. He may have been unphased by the two inch incision in his stomach, but we weren’t. The result was no visits to the playground, no trampoline and none of his usual adventures in mayhem. Being contained like this is not good for my son. He needs an outlet for his energy and staying couped up in the house is not it. And when that energy is not released through being active, it invariably materialises as difficult behaviour.
Really difficult behaviour.
Levels of screaming have been at an all time high this last week, as has my son’s refusal to comply with just about anything asked of him. Most requests are met with a cry of “I’m in charge!” Even poor Nanny was on the receiving end of a death threat when she tried to get him to sit and eat his dinner. And Grandad has still not recovered from giving him crackers with cheese on. B doesn’t do cheese on crackers and he made sure Grandad knew about it. Like I said, a difficult couple of weeks.
Last weekend, my wife once again questioned how we would cope with this as he gets older. It’s difficult to know the answer to that, but perhaps respite will be an important part of the way my son is cared for. I hope not. I’d like to think that we have the resources and the energy to be able to handle whatever his condition throws our way. We need to make sure we’re in good condition ourselves, if we’re going to.
Though we have the odd weekend away, and a few rare nights out together, we don’t really take time out from the boys as a couple. I think it has taken its toll on us. I can’t speak for my wife, but I know the boys do not get the dad they deserve, because he would be more attentive, more full of energy, more patient and less inclined to be grumpy. He would see the pleasure in our lives together, rather than focusing on the problems. He would kick autism’s ass, not let it hammer him into submission.
For my wife, there is no let up. For various reasons, she does not have an escape from some of the difficulties we face, unless you count work. And as that work often involves helping children with asd, I’m not sure it does count. But things could be about to change. This week, my wife re-negotiated her hours of work, meaning that she will have more time at home, to herself. She needs this time, and space. Life for her is a constant treadmill of work and full-on family duties. She does not have that all important outlet. Hopefully with more hours in her week she will find it.
I am better at taking time out from autism than my wife. I have a (sometimes twice) weekly evening out with some guitar buddies. It’s a chance to relax and be something other than B’s Dad, whilst murdering whatever song it is we’ve decided to play that week. It’s guaranteed fun, which is not something I can honestly say about family life. That’s a terrible admission, isn’t it? What I mean to say is, for all the joy my family brings into my life, it’s not always easy.
Work is also an important sanctuary for me. I have no doubt whatsoever that if I was home more, I would be hellish to live with (or more hellish, as my wife would say). But having work to worry about gives me a different focus and in many ways is an aspect of life that I have a little more control over, so in that respect is good. I also encounter children on the spectrum but not in a way that makes me feel I cannot escape from autism. Work, for me, is my time away from autism.
But even that’s been under threat recently. Last week I picked up a book called ‘Al Capone Does My Shirts’, by Gennifer Choldenko. It’s that time of year when teachers start planning for the next academic year, and I decided to put down the autism books and read a novel that I might base my first term with Year Eight around. I was also reading it for my own pleasure- a nice bit of escapism involving a tale about families living on Alcatraz in the Thirties. And nothing to do with autism at all.
More fool me. A central character in the book is Natalie. And guess what? Natalie is autistic. In fact, the whole book is essentially about autism and the way in which Natalie’s brother copes with it.”Is there no escape?” I asked myself. “Is every fucking thing about autism? Am I some sort of autism magnet now?” Couldn’t I, just for once, have some time out from it?
Of course, I read it. It’s a great book with an unusual premise and the portrayal of the girl’s autism (though never named) is well handled. It did present a dilemma though. Teaching the book would inevitably mean helping the students learn about autism, and it’s obviously a very personal subject for me. I just wasn’t sure if I wanted to be spending time at school talking about it. Moreover, it was difficult to see how I could teach it without mentioning my own connection to the condition.
Until recently, I had never told a class I teach about my son. It’s private and I like my privacy. However, during preparations with my form group for a charity event, I discovered that one of the recipients of raised funds would be a group we attend. There was suddenly a moment when telling them about B seemed completely appropriate. So I did. My class’s response was fantastic- they were mature, interested and caring. It didn’t feel intrusive and, if anything, has improved my relationship with them. I think they perhaps see me in a different way, and hopefully what I have told them about autism will de-mystify it for them and lead to more open-minded, accepting attitudes.
Perhaps I will teach that book in class after all.
So now even my work life seems to be wrapped up in autism, and the boundaries between different parts of my life suddenly seem blurred.
Sometimes, even B takes time out from autism. Or so it seems. These are the occasions when, out of the blue, he will behave in such a neuro-typical way that it takes our breath away. Usually it involves him asking a question or making an observation or responding to another person. At times like these, it’s almost as if B was just pretending all along to be autistic. I imagine him shouting, “Surprise! It was all a big joke! Grandma was right after all!”
But most of the time, my son does not have time out from autism. Here I am complaining about not getting a break, when my son lives every day of his life with a condition that utterly defines his thoughts, his actions and his ability to function in the world. How can I even dare to yearn for time out knowing that he can never have it? My son doesn’t have autism, he is autistic. It’s what he is. All of the time.
The saving grace of our lives together is that, although the autism never goes away, for the most part B is the most amazing, beautiful child. Forget all my moaning. These last two weeks have been difficult because there have been additional pressures on my son’s life and his balance has been upset. When we get the balance right, when B is happy and settled and in a routine, he is a joy. He is the best thing in my life- an incredible child who has changed the way I look at the world and taught me that different is good. I am lucky to be his dad and should not be complaining about having no time out. I should cherish every moment I have with the little bugger.
But as I said, sometimes you need a break from autism. I think I’ve spent a long time being an autism dad, perhaps at the expense of being just a dad.
As a result, I have decided to make this the last ‘Life with an Autistic Son’ post. I still have a couple of product reviews to post but as far as weekly bulletins from the autism front-line go, that’s it. I always knew the right time to wrap things up would come. Now is that time. I have told my story and lots of people have shared in it. Some may even have benefited from the words I have shared. I hope so.
I ‘d like to thank everyone who has followed my tales of life with an autistic son. Your comments and support have made this a wonderful experience and I will miss sharing my life with you.
But now I’m off to concentrate on being what I’ve always wanted to be- the very best possible father to my boy. He deserves nothing less.