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Has autism touched your life?





Some other time, some other place, and things would be different, maybe.
You might even know my name. You might even love me.
But if you'd let me share your world, I promise I could make things right.
So won't you let me share your world?
Won't you let me in? 

I wrote those lyrics in 1998. Back then, my 3-yr-old twin daughters lived in their own separate little worlds. Nobody else was allowed in.

Before I had children I didn't know much about autism. I'd seen Dustin Hoffman in Rain Man, but that was about the extent of my 'knowledge' on the subject. Of course, that all changed when the girls were diagnosed in '97. Senior Management and I soon discovered the diagnosis covers a wide range of symptoms. Mr. Hoffman's portrayal was by no means a blueprint of what we could expect.

Over the years we've come across a lot of people whose lives were touched by autism in some way. Some have children who managed to graduate from college despite being considered autistic. Others are still coming to terms with a recent diagnosis, resetting their hopes and expectations while grieving for the life and future their child will never have.   

Our girls are sixteen now. Sad to say, there'll be no college education for them. No marriage or children. Years ago we accepted (and started to prepare for) the fact that they'll never lead anything like a 'normal' life. In fact, it's the main reason we moved to America.
 
Even so, my daughters have changed since I wrote that song. They still don't really know my name, but they know I'm 'Daddy' and while we don't have full citizenship in their worlds, they long-since granted myself, my son and Senior Management a sort of occasional Green Card status. 

In the between times when when they're not pretending we don't exist or driving us to distraction, they laugh a lot, and we get lots of hugs. I know my girls are happy and when all's said and done, isn't that what we want most for our children?

How about you?

Has autism touched your life?
  

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Comments

lyonesse
Apr. 27th, 2011 03:34 pm (UTC)
i'm autistic. i was diagnosed in '74 or so? fortunately my family of german speakers had access to asperger's writings (not yet translated into english) so they didn't presume i would be kanner-esque, which was kind of an issue in way back then.

i don't consider it a disability at my level; it's more like a part of a personality. i have friends with recently-diagnosed kids who i have set myself as an example for -- they're my friends, they can deal with me, thus they can deal with their kids. it's harder for them of course bc of the emotional investment, but i truly think it pays off.

i am so glad your girls are happy, and that you appreciate that in them!
jongibbs
Apr. 27th, 2011 05:14 pm (UTC)
I hope he's not reading this comment, but I'm 99% certain an excellent guitarist I know is on the spectrum somewhere.
lyonesse
Apr. 27th, 2011 06:29 pm (UTC)
....you hope he doesn't read this why?
jongibbs
Apr. 27th, 2011 06:32 pm (UTC)
Because I don't think he knows he's on the autistic spectrum and I wouldn't want to embarrass him.
lyonesse
Apr. 27th, 2011 06:38 pm (UTC)
er. it's really not that embarrassing.
jongibbs
Apr. 27th, 2011 07:00 pm (UTC)
Trust me, I've known him over twenty years. He'd be embarrassed, and probably a bit miffed.
lyonesse
Apr. 27th, 2011 07:25 pm (UTC)
*shrugs* well, thank you both for perpetuating a social stigma.
jongibbs
Apr. 28th, 2011 12:05 am (UTC)
Social stigma my... bottom. He just wouldn't like the fact that I was talking about him behind his back :P

Things What I Wrote and Other Stuff

No longer in print but there are still some copies floating around out there


No longer in print but there are still some copies floating around out there















 











THE MEAGER PUDDLE OF LIMELIGHT AWARDS


Books by my writer friends - compressed

NJ Writing groups - compressed

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