Free e-book giveaway!

LWAAS 3d book coverFor a limited time the ‘Life with an Autistic Son’ e-book is available for free via Amazon. The book has been very well received, with several five star reviews already posted on the book’s Amazon page. I hope this free promotion will give as many people as possible the opportunity to read the book and continue to raise autism awareness.

Get it here (Amazon UK) and here (Amazon US).

Many thanks.

B’s Dad

Posted in autism | 3 Comments

More reviews for ‘Life with an Autistic Son’

LWAAS 3d book coverThe ‘Life with an Autistic Son’ e-book has received some more great reviews this week, most notably this one below from the amazon.com site:

Life With An Autistic Son by B’s Dad is a true masterpiece of authenticity. If you are looking for a book that shares in depth gut wrenching emotions about living in the same house with an autistic child, this is the book you need to read. B’s dad inspires, yet also makes it real the good and the bad of the roller coaster life of parenting an autistic child. What makes this book special is that as you read it, you are watching the transformation in a father’s thinking of how he reacts to his son with autism.

B’s dad does not claim to be an expert so you are not pressured in anyway to understand big jargon analysis that many books on autism seem to convey. This story is personal to the core. For example, Life With An Autistic Son is written in short story fashion due to the fact much of what you are reading was presented in a blog. As a follower of that blog, I was introduced to B quite awhile ago. The genesis of this book is a father coming to grips in his own way with the unthinkable life with an autistic child. B’s Dad is a teacher so he has wonderful skills in writing in my opinion, and he is also sensitive to the nature of issues that arise in the teaching field when it comes to children with autism.

The question arises about how folks in the author’s life interpret if autism is truly a disability. It surprises you to find out that some people do not view autism as a disability. Another point of interest was the author’s expressions concerning the diagnosis of his son:

“…it seems obvious that we were dealing with autism. At the time we resisted the assumption, in the hope that it was simply a brief developmental delay… we seemed constantly to focus on what my son couldn’t do, as opposed to what he could.”

As a mother of a 20 year old autistic son, I can remember the day like it was yesterday when I was told that there was no hope for our disabled son. This was in 1994 at a huge University Hospital I will not name. In reality as a parent, I found hope where hope could be found as B’s dad did. You look at the good of what your child can accomplish and not focus constantly on the negatives. It is the best way to survive as the book conveys. It does not mean you do not work on trying to find new and creative ways to assist your child to be successful in something he can not do like a normal person. As parents like B’s dad, we learn to find accommodations and adjust accordingly.

One of my favorite little chapters (as this book is broken down into very small chapters for easy reading etc) is titled Flying In The Sky. This title came from B trying to understand where his pet dog had went to after dying. It was poignant in that B really had no sadness to speak of even though you know the boy loved his dog. It is as if the wired brain of an autistic child just does not process sadness or death like we “normal” human beings do. It seems like a good thing to me to be honest with you. B is free at least from the one thing that bothers the rest of us and that is the death of a loved one. His mind does not think about it the same as we would. It does not mean B is not sad, but he just lets it go and moves on with his life. I would just like to tell B that I really like that about him. It is OK to be different and I like that too.

If you want to be inspired, pick up this book today for an informational and liberating view of a life touched by autism— thanks to B’s dad.

The e-book is available here (Amazon UK) and here (Amazon US).

Posted in autism | Leave a comment

Scope Face 2 Face Befrienders Scheme

Scope-logoI can still vividly remember the feeling, three years ago, when I stepped out of the paediatrician’s room and back into a world that had changed forever. When I stepped inside, there was still the (remote) chance that our son was not autistic, that a diagnosis would not be made and that, given time, everything would work out the way we had planned it.

When the diagnosis came, and we stepped out into our new world, we were unprepared. Of course, I had thought at length about how things might be, how we would respond and how we would feel, as well as what it meant for my son. What I hadn’t counted on is how utterly isolated I would feel.

Perhaps if we had left with an information pack, a reading list or a leaflet I would have at least had something to (literally) cling onto. A starting point. Instead we left the doctor’s room with our hands as empty as our hopes. No one told us what we should do, who we should talk to or how we should feel. Even with my wife on my arm, I have never felt so utterly alone.

What followed was silence. I went to work but didn’t talk about it. I saw friends but didn’t talk about it. And even though my wife and I were completely consumed by it, we did not share enough of how we were feeling.

Thinking I should be accepting the arrival of autism more readily, I began reading whatever books I could get my hands on. Frequently they were written by people full of positivity, who had turned their ‘journey’ into the most positive of experiences. That didn’t sound like what I was going through.

My wife felt the pain and isolation even before the day our son was diagnosed. She told me: “I would sit at work where colleagues would sit and chat about their three year olds; silly comments that had made them laugh or surprised them. I was unable to join in the conversation. It was like a knife in my heart every day, and I held it together in the office but cried every day driving home.”

Eventually she was able to reach out to other mums in similar circumstances, something that helped her a great deal: ” I have a good friend at work, and she has a child with Asperger’s. I told her and cried to her over coffee in our local cafe. She kept me sane, told me it wasn’t my fault and I couldn’t change it and held my hand. It was a relief to talk to someone who just ‘got it’, no explanations needed. Someone who knew it was one of the worst feelings in the world to be a mum with a child with a disability, and had also asked the question ‘what had we done wrong?'”

In the months after diagnosis, when we felt strong enough, we sought out local support groups. Sometimes it was hard, to look at other children and think ‘will my child be like you? Be disabled like you?’ Some groups worked for us and others ran their course but the one thing that we kept going back for was the chance to talk to other parents. That alone was the thing that kept us going back week after week.  We were lucky to meet some friendly people who just accepted us, accepted our son and accepted and understood what it is like to have a child with a disability.

My wife made good friends with one particular mum, they still meet regularly with and without kids for coffee and a natter. This has led to connections with other families and we are hopeful that further friendships may blossom. My wife says: “Without my SEN mumchums I honestly don’t know where I would be. They keep me sane, laugh and cry with me and make me realise I am not alone in my new life as a SEN mum.”

A key factor that has defined life with an autistic son has been the struggle to find understanding. Particularly difficult has been getting people to understand what the implications were for my son and for us as a family. Some people close to us, we realised, will never understand. Even those who desperately want to understand, to help, to try and make it better can never really come close, because it is only when your child has a disability that you can really, truly understand.

The charity Scope recognises and understands this.

I was contacted recently by them, and learnt about their Face 2 Face befrienders scheme. They match parents with disabled children with trained befrienders, with the purpose of helping parents feel less isolated and letting them know that others have gone through the same experiences. The role of befriender is not about ‘fixing’, but listening – and drawing upon a shared experience. The Scope Face 2 Face training develops the skills that are so important in befriending: how to listen without judging, how to empathise, re-stating what the other person has told you to ensure you’ve correctly understood, offering and discussing solutions and acknowledging where formal counselling may be more beneficial.

The purpose of this blog post is help promote and raise awareness of Scope’s Face 2 Face befrienders scheme. Regular readers will know I no longer write weekly posts, but I felt compelled to make an exception by writing this. You can learn more about the work done by Scope here. You can also help out by writing a blog post, using social media and just generally spreading the word. Scope have an information pack for bloggers available from their site.

Three years ago, when our world was falling apart, a helping hand from someone in the same boat would have gone a long way towards getting us through. Please take the time to share the valuable work done by Scope, so that others can get that guidance and support that is so often in short supply for families.

Posted in autism | 3 Comments

Reviews of ‘Life with an Autistic Son’ e-book

LWAAS 3d book cover“Honest and thought provoking” (5 stars)

“I would recommend it to anyone who has been touched by autism” (5 stars)

“Written with great honesty but at the same time great humour” (5 stars)

“refreshing honesty, laugh-out-loud humour and intelligent grace” (5 stars)

“Human, witty, insightful” (5 stars)

A huge thank you to everyone who has supported the e-book of ‘Life with an Autistic Son’. Posts that were featured on this blog can now be viewed via the book, alongside some exclusive content.  The book is available here (Amazon UK) and here (Amazon US).*

If anyone would like a free review copy of the book, just email me at bsdad@hotmail.co.uk All I ask in return is that you post a review on your blog or on the Amazon site.

Many thanks

B’s Dad

LWAAS 3d book cover

*also available in other territories

Posted in autism | 2 Comments

Life with an Autistic Son- now available as an ebook!

LWAAS 3d book cover‘Life with an Autistic Son’ is now available as an ebook from Amazon. Posts that were featured on this blog can now be viewed via the book, alongside some exclusive content. Please help raise autism awareness by taking a look at the book, spreading the word and maybe even writing a review on the Amazon page. Your support is greatly appreciated.

Amazon UK: here

Amazon US: here

(also available in other territories)

Posted in autism | 3 Comments

Autism Parenting

cover_8_1This month’s Autism Parenting Magazine features an article from ‘Life with an Autistic Son’ on the summer holidays. The magazine is well worth a look and a free issue can be downloaded from the website. I’m on page ten! My wife and I would like to point out that we look exactly like the beautiful couple on the cover. That doesn’t look much like the West Midlands though. Anyway, please support the magazine by taking a look and maybe even subscribing if you like what you see. Have a good Summer.

B’s Dad

Autism Parenting Magazine

 

Posted in autism | 2 Comments

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.

Posted in asd, aspergers, autism | Tagged , , , , , | 41 Comments