Tuesday, 2 November 2010

"There are times when silence has the loudest voice".

On November the 1st, thousands of people, millions perhaps particulate in a thing called Communication Shutdown. The aim of this day was to simulate what it is like to feel shut off from the world around you in a similar manner to someone with autism. The organisers asked people to come out in support of those affected with autism and to show their support by not using any social networking sites like Twitter, Facebook etc. A whole 24 hours without these sites was supposed to create empathy through frustration, frustration at not being able to find out who poked who, who is still in a relationship or how your farm was fairing. Can you already sense from my tone that I don't think that this is a good idea?


Apparently quite a lot of people thought this idea was crap too. One blog ran a 24 hour Communicate to Educate campaign and it sparked a whole host of other campaigns. While any attempt to raise awareness of autism is valid, there has to be some real thought into the expression of it. I, like many parents of autistic kids spend so much time trying to get into the head of my autistic child. I try to pre-empt the best way to communicate, the convey information that will be acceptable to his thought processes. Silence drives me mad and lack of communication with A is a daily struggle. It makes everything difficult. From dressing for school to finding out if he has homework due.

Over at the wonderful Extreme Parenthood blog, they are hosting an Autism Shout Out encouraging parents to come forward and to speak out about autism in their lives and their experiences with it. It seems impossible to write a post about dealing with A's lack of communication for the shout out so I'll write a rather selfish post on life with an autistic child. I've been struggling with a few issues of the last few weeks and in an brutally frank move have decided to dedicate this post to the cause and to talk about what I'm struggling with at the moment. It seems incredibly apt as it is the concept of silence I am struggling with. So silence in its many forms is the theme of this piece.



I don't know about you but sometimes, burning things crop up in my mind and it blocks my writing.  I wrote a post last week about what life is like with a disabled child, how it affects you mentally, physically, socially, financially. I found that emotionally I couldn't get past this piece and breaking my silence had stirred up intense feelings. What I had done was to write out a little bit of therapy and I wondered what I needed to do with it. Not that I take myself that seriously as a writer and the blogs that I subscribe to here are all far better and more eloquent than mine. I had used my blog as my virtual leather chaise but I couldn't post it. I have an amazing relationship with Oh Daddy and we are the best of friends but sometimes there are certain things we don't talk about when it comes to A. Instead of asking him to mentally prepare himself for yet another serious chat about A to discuss his disability and how we are coping, I used a blog post to work though the feelings that I was experiencing. I won't post it here as I worry too much about what people think of me. I might share huge swathes of my life on this blog with you guys about my life but there are certain things I have to stay silent about.  I have to stay silent because some things are just too personal. 

So I have imposed a rule of silence on sharing certain things/topics on here but another type of silence has been imposed on me by others. I've had a pretty awful experience in the past online where an individual I friended through various social networking sites started a vicious hate campaign. Everything I posted, everything anyone posted on any of my networking sites was analysed (always incorrectly) for dirt, for slander, for hateful comments. I was constantly attacked, talked about out loud and in real life people were told of how evil I was. They were told that all the evidence they needed was online except they never bothered to read it or to look for it, just took it for granted that I acted badly. I found myself constantly defending myself to deaf ears. It went on for a year and a half and as a result has made me very distrustful of people's reactions and of my ability to communicate clearly. And so if I feel that something will be taken the wrong way, I stay silent.

I bring up this dreadful experience because a very dear friend told me recently that she had read my blog. Aghast at this news, I was mortified. She commented that unlike in real life, online I am extremely apologetic for my voicing my opinions and views, a quality of mine that she holds dear (I think). I think it has happened because of past experiences, breaking silence on certain topics for me can be uncomfortable. I find it strange as I'm sure that you will, that a blogger who details significant portions of her life, her thoughts via the medium of a blog would actually be a virtual shrinking violet afraid of her voice. That she would log on one day and say 'you know...this X pisses me off' and then the next day would say 'I'm really sorry about yesterday...'.

So let me apologise for my weak constitution and explain something. Break my silence if you will. Something I don't talk about. I get angry very easily sometimes. My anger is a selfish anger and I hate it. It is an irrational anger that crops up from time to time. An anger that silences me.

It is an anger that is born out of raising a disabled child.

There I've said it. In real life I'm very quiet about A's disability. There are certain social groups and certain familial groups where I stay silent about A's autism.  I do not draw attention to it nor to the things that he cannot do and might never be able to. I don't talk about the future because there isn't one. At least one that we could predict. We cannot comprehend what life will be like for in a few years time, we won't know what his adolescence will be like. We cannot make plans for him, for his future. We cannot dream about where he will go in life, where life will take him and what he can and cannot achieve. I get frustrated and then I get angry. I get angry at all the people I see who take their kids for granted. Who use having children as a bargaining chip in a failing relationship. Who have children to simply kill time and raise their kids in the same ignorant fashion that they were raised in. I get angry at the people I know who perform a half-arsed job at being a parent. I cannot ever get angry at him. It's not his fault. Science hasn't led us to the point where we can work out if it's my fault. Was it something I did when I was pregnant? I followed the guidelines to a T. Is it environmental? I should've replaced my old microwave instead of buying baby clothes. My silence about A's autism costs me dear. It costs me connections to people I know. 

I get frustrated that no matter how hard I work at being his Mum, it is never enough. It will never make a difference. I watch others and I watch other children and I find myself resenting them. I get frustrated at irresponsible decisions and the selfishness of adults. I find it remarkably hard raising a child who is limited at every turn by his disability to watch children who could be capable of achieving anything they set their mind to, be limited by the actions of their parents. I am so fearful of A's future that this fear often takes me to a dark place. An angry dark place so it is better to be silent. This is what communication shutdown means for me. 

5 comments:

  1. I'm with you on the 'no communication' thing. I appreciate the idea but don't think it's a very good one.
    Your post touched a bit of a nerve with me. I'm stressing a lot at the moment about what impact Nipper's autism is going to have on his future.It's been upsetting me terribly and if I don't get a grip it's going to make me ill. It's very hard and not something that's very easy to discuss with anyone. Hubby's view is that we should just take it a day at a time, read everything that we can, and do our best to teach Nipper what he needs to know (when we work out what that is of course!). I heard some kids in the playground talking about Nipper (about him talking strange) It's the first time that anyone has 'noticed' and I wasn't sure what to do or say.
    I've been feeling pretty narked at hubby's nephew recently. He's been moaning about his AS level results but he's only got himself to blame. He's bright enough to do well, has his own bedroom to study in, has his own laptop and can get on the internet whenever he likes, etc. If he can't do well then there's no bloody hope for most other people!
    Shame you don't live round the corner Fran, we could have a coffee and perk each other up!

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  2. As always, your support means so much to me Tilly. It's hard to contain the frustration and the anger sometimes so I decided to see what would happen if I let it out.

    Like Nipper, A is at one of these stages in his life and development where it demands attention to the future. The school are focussing on the next stage of his education and we know that the minute he starts high school it will be subject choices, options and all done with one eye on the future. It's hard to deal with when like us you have to take things one day at a time. xx

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  3. Congratulations on a brave and frank post.
    Like Tilly, I appreciate any effort to raise awareness about autism, but instinctively silence doesn't seem the right way to do it. Surely more communication - however dark, painful and angry it is - is better than less.

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  4. Your heartfelt post struck a chord with me too.
    There are posts I've written and not published as I fear offending people.
    But it's a real shame to stay silent as I also find my blog a really valuable way of working out ideas and feelings.
    I guess what you experienced is the horrible down-side of having your innermost thoughts published on a public forum tho. People can interpret what you say in whatever way they wish.
    I thought the whole silence thing for autism was a bit mad myself. Silence won't bring us forward.
    XX

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  5. Big thanks to you both, Ellen and Jean. xxx

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Thanks for taking the time to comment!