Time Out

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.

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41 Responses to Time Out

  1. Mike says:

    Thank you for all your posts, and telling your story – as another father with an autistic son they have definitely helped me. I will miss your posts, but fully understand your reasons for doing so.

    All the best, Mike

  2. Louise says:

    Thank you for all your posts, they have been so helpful and I will miss them as I look forward to reading them each week but understand why you want to stop. Best wishes, Louise

  3. dug4000 says:

    I’m so sad to hear this is your last post. My wife and I have found comfort in your entries here, as they seem to parallel what we’re going through with our own 6 year-old autistic son. It has been a great reminder that we’re not the only ones going through it.

    Thanks for what you have written so far. If you ever decide to come back to it, we’ll be reading.

  4. Rich B says:

    Mike has summed it up perfectly, best wishes. our lives seemed to have a lot in common as we look after our 4 yr old boy and learn to help him live with autism. My wife & I enjoyed your posts.

  5. April says:

    It’s late at night and I may even have a few glasses of wine to blame, but I’m actually teary at the discovery that this is your last post. Ridiculous I know. But yours was the first blog I found after my son’s diagnosis that I really wanted to read. And read and read. I have since met a number of ‘autism parents’ but when I first encountered your blog I hadn’t actually met any. So it meant a lot. Always excellent, considered, beautifully written and enormously comforting. Apologies for the gushing (I blame the aforementioned wine) but I’ll miss it. All the very best to you and your family! X

    • B's Dad says:

      Thank you April. You don’t know how much it means to be told that the blog helped. Thanks for reading. Mind if I join you in raising a glass?

  6. Lydia says:

    Having followed your blog for some time, often taking comfort from the many similarities in our situations, my first (very selfish) thought was “oh no”.
    But having taken a second to pause I wish you & your family all the best.
    I’m sure B will continue to frustrate & astound you on a regular basis but the humour you have shown in your writing will see you through any rocky phases.
    Thanks for sharing so honestly & please be assured that you have helped.
    Lyd

  7. StephsTwoGirls says:

    Oh no!! Please don’t go!! I’ve loved reading every bit of what you’ve written. You’ve frequently cheered me up and you’re the one blog that I always read!! Will miss you lots. Maybe make it just a break instead?! Or write a book – even a non-autism book?! You’re too funny to keep quiet :) hope I can get back in touch a few years down their and see how you and B and the whole family are doing… Take care x

    • StephsTwoGirls says:

      That should have said down ‘the line’ not down ‘their’… Definitely not blaming it on the alcoholic slush puppies which have been consumed tonight… ;)

      • B's Dad says:

        Steph, you’ve been a big supporter of my blog for a long time and I’d like to thank you for your many comments (always interesting ) and the plugs on your blog. And you’re still the only person I’ve ever met who knew I wrote the blog! You and my wife! Be assured I’ll be reading your blog (you’re not allowed to stop). Let’s keep in touch.

  8. Life&Ink says:

    There must be something in the air as I wrote this week too about needing to take breaks from autism and allowing yourself to just be. Perhaps you will find your voice as dad rather than autistic dad and want to write from this new perspective, you will find that out. Life is an evolving adventure, where we are today is not where we were yesterday or will be tomorrow. 18 years with autism and I barely mention to people anymore that Ted has Asperger’s. Not because I am ashamed, because not once have I ever been ashamed, but because the line is just so blurred now. Ted and autism have simply morphed into one and he is just Ted.

    Enjoy the adventure. :-)

  9. Marie-Claire Norman says:

    I am also so sorry this is your last post. I have followed from the beginning as your son and my daughter are of a similar age and you have always been a couple of weeks ahead of us in the autism support cycle (statementing, parent’s evenings etc).

    However, I am pleased for you that you have found the right time for you to end it. I am sure you will have many happy opportunities to think past the autism. I completely understand needing a break from it all on occasion.

    All the best for the future. Maybe you should consider compiling all that you have written already into a book. You write beautifully. Thank you again.

  10. mp says:

    Whilst I understand completely the reasons I’m gutted this is your last post because for the last 6/7 months I have really, really looked forward to seeing a each new posting and read some of your older ones quite a few times with great interest. Its helped me confirm, understand and push for a diagnosis for our own 5 year old son which we are still “waiting” on but also to stay positive. We wish you and your family the very best wishes and have a fantastic summer break. Thank you so much!

    • B's Dad says:

      I’m so glad the posts have helped you. Best of luck with your son’s progress. I’m sad to be finishing but have lots of reasons and know that the time is right. Hopefully people will still find their way to the posts, and though it’s not a weekly bulletin, I think the posts stand up as an account of what those first few years are like.

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  12. Alan says:

    Hi,

    Thanks for the blogs and for the honesty. You have inspired me somewhat to blog myself. If I do would you mind sharing the link with your followers? I can’t guarantee it would be as good but would certainly be honest and hopefully helpful to others. All the best, I hope you come back to blogging after a decent break from it. Alan.

    • B's Dad says:

      Go for it Alan! I’ll look out for that one! I’d recommend doing it. Lots of people have told me the blog helped them, but I don’t think it helped anyone as much as it helped me. It has been a life line. It got me through the worst period in my life. I’ll miss it. So yeah, there’s a gap out there for an autism daddy blog!

  13. Dezza says:

    A brave decision and a good one. You’ve been a tonic over a difficult few months for me but your family needs you. Thank you and I wish you all the best.

  14. Al says:

    Your blog has seen me through referral, assessment, diagnosis and statementing over the course of 18 months. Tbh, at times, it was the only thing that saw me through. The timing of some of yor blogs has been spot on too. I’m gutted you are not blogging any more but I can understand it too. I’m going to check back from time to time, in case you change your mind! Thank you :-)

  15. ASD Dad says:

    Many times you’ve written on your blog what I’d hoped to have written on my own, and often done so with greater humor and tenderness than I would have managed. While I’m very sad to hear this is your last post, I also completely understand your reasons; there is never enough time in the day as it is.

    I hope at some point you will feel yourself in a place to pick up again, but even if you don’t, the stories you’ve shared thus far are a comfort and inspiration to many.

  16. R says:

    This is so sad. Will keep checking just in casex

  17. bluejays93 says:

    thanks for the blog. i just started to follow it and its been a pleasure to read. good luck with everything. i know its hard to get away from autism. im a single dad dealing with it on my own everyday. i used to complain but now i fully embrace it. yes its hard to read or watch anything without autism coming up. strange how when its in our life we do become magnets for autism. i think its the way we percieve determines how we feel about that happening.

  18. Beth says:

    Wow!!! That made me sad and also made me laugh out loud…. I have valued your posts so much and was honoured when you posted my message in past blogs – it allowed my family and friends to see how I really feel about what autism has brought to our lives. I wish you a happy life…. I know there will be tough times but I hope you know there will always be those of us out there who know and in part share your story and experience. All the very best to you and your wife and your wonderful boys – always treasure them. With fondness and deep gratitude for the voice you have been in our house for so long – Beth x

    • B's Dad says:

      Beth, the contribution you made was one of my very favourites, so thank you for that. Your family are very lucky and I wish more people could be as aware and accepting of autism as you are. Take care.

  19. Alenka says:

    Your posts have been my comfort and friend over the last year. They have kept me sane when I felt that no one understood or was listening. Sharing your story has had a profound effect on my life & I am sure many other families. Thank you for sharing. I will miss your posts a lot. All the best. Alenka

  20. B's Dad says:

    Alenka, thank you x

  21. Peng says:

    Hi B’s Dad, I’m a reader from Singapore. I was desperately searching information about autism when my son was diagnosed with it. And I chanced upon your blog. It is always a pleasure reading your writing as you always write so beautifully. Truly appreciate your frankness and humour. It is sad to know that you are discontinuing your blog. Well, everything will end sometimes, someday. Thank you for the wonderful sharing and ALL THE BEST to you, your wife, dear B and his brother :)!!

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  23. Ellie says:

    Our daughter is not autistic, but she does have Kabuki syndrome and some autistic traits. I have absolutely adored your blog. Sometimes I’ve howled with laughter as it’s seemed you have a camera on our lives, other times I’ve felt really sad for you, and other times still I’ve learned some really useful stuff. Best wishes and good vibes to the lot of you. And thanks.

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