The Boy’s World









These are some of my favorite photographs I’ve ever taken. How predictable they are of my son. I took these just days after getting my new digital camera, and I was experimenting with all the different settings on the thing. These were taken with the rapid action settings, the multi-burst setting I think it is called.

The reason I like these photographs of my son so much is not because they are particularly good, or because they were taken with my new shiny camera, it has more to do with the fact they so perfectly display what it has been like to be with, be around, raise my autistic child.

My experience with autism is limited to raising my son, who was diagnosed as having asperger’s syndrome about the age of five. I also did some para work for DPS where I met and helped with some other autistic children that had different functional levels. I am not an expert. I’m barely informed on the ever changing trends, but I try to keep up.

My son is very bright, that often comes with asperger’s but he is different, and over the years, people have asked me questions, like ‘What is it like raising a disabled child?’ or ‘How does that work for you guys?’ Since he is mostly functional and I’ve never really had to deal with a truly disabled child except when I worked at various medical jobs and when I was working at DPS, I’m always at a loss how to answer. I have a friend that is a twin and when people ask her what it is like having a twin she always answers ‘I’ve never been anything else, how am I supposed to answer that?’ I’ve never had any other children, I have no basis for comparison.

If I were to have an answer, it would look a lot like these photographs. He lives in his own world, a world that we all seem to be stumbling around in and bothering him on occasion. He had his own language as a child, and it was a huge struggle to get him to speak english. So in these photos, to see him telling me about his day, laughing and expressing everything that happened to him, and he remains slightly out of focus of the reality he has been forced into, that is what is like to live with, to raise my autistic son. Some days it is dramatically hard to understand and see him, and other days, like in the sixth and seventh shots he almost falls completely into place and I can totally understand him and you can see he gets the world – even if he is a little blurred on the edges.

Maybe I’m unfair, maybe we are in The Boy‘s world and we’re the ones out of focus.

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6 Responses to The Boy’s World

  1. sooz says:

    over the last year or so i’ve been considering the possibility that i may be somewhat autistic in the manner of asperger’s syndrome. my mother said that i almost never spoke as a child. she said when i was 5 years old she and my dad were beginning to wonder if i could understand english.

    my kindergarten teacher wrote in my report card that i never participated in class activities and that she wondered if i even understood what was expected of me. my dad in his ignorance simply took this to mean that i had gotten a “bad” report card and i was punished for it.

    personally i resist the idea of autism being called a “personality disorder” or a “disability”. it has nothing to do with the level of one’s intelligence, it’s merely a different way of interacting with the world. (this is not really addressed to you or anyone in particular, it’s just a general complaint i have about the elitism and prejudices people show toward things that are different from themselves and things they don’t understand.)

    in any case i must commend you on how well you’ve raised your son. the love and care that exists between you and him clearly reflects in the photos and experiences you’ve shared. kudos. 🙂

  2. girlzoot says:

    Testing is a good idea, and the two links I have are good for resources. It isn’t precisely like they have meds, although there are a lot of movements towards “curing” autism which I’m not sure I really agree with – but that is neither here nor there.

    The big thing with being tested and diagnosed as an adult is they can get you resources, and help you with coping mechanisms.

    I know that for a long time I wasn’t certain that his diagnosis and his placement in the disabled classrooms when he was younger was the right idea, but as he was able to learn and function better and be moved more and more into the average classrooms, the path seemed like the right one.

    I’m flattered at your praise of my photographs, thank you.

  3. girlzoot says:

    Oh, and you can check this site:

    http://www.autism-society.org/

  4. sooz says:

    ever since i first read about asperger’s syndrome about a year ago, i’ve been trying to figure out how to proceed from here. thank you very much for sharing this info and i will most definitely be looking into getting tested. cheers, sooz

  5. Susan Senator says:

    I LOVE how you have illustrated your take on your son’s world by these slightly unfocused photos. Your empathy for his viewpoint is wonderfully poignant and admirable. I have a sixteen-year-old with autism and I,too, believe that he finds happiness in his own perception of the stimuli-laden world around him, and I try to respect that more and more, rather than intrude with rules of how he should be. When we need to connect, we do, and that feels like a gift to me, something I never take for granted anymore.

  6. girlzoot says:

    Susan

    Thank you – there are times when I wonder how to make sure I can keep him moving forward in life without destroying him and his world by having him intereact with ours.

    With your book and your son you know these challenges never seem to end.

    I’m pleased you like the photos.

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