At the very core of who I am as a person (and strongly influencing how I parent) is the sweet face you see above. Meet Jay. Born November 1998 to parents just 19 and 20 years old, he was to change our entire world.
Jay is autistic. I don't like to say 'he has autism' because I've always felt that's kind of like saying 'he has the chicken pox' or 'he has red hair' - things that, given time or circumstances, could be changed. Jim Sinclair, in his essay "Don't Mourn For Us" says it in the most wonderful and concise way:
Jay is autistic. I don't like to say 'he has autism' because I've always felt that's kind of like saying 'he has the chicken pox' or 'he has red hair' - things that, given time or circumstances, could be changed. Jim Sinclair, in his essay "Don't Mourn For Us" says it in the most wonderful and concise way:
Autism is not an appendage. Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say, "I wish my child did not have autism," what they're really saying is, "I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."
Read that again.
This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
I'm not an expert on autism, but as soon as I read that, in that dark, murky period right after we were diagnosed in 2002, I knew it was true.
We are so lucky. It scares me sometimes to think how lucky we are. We know many families living on the spectrum and life really can be deep-in-your-bones, how-are-we-ever-going-to-come-through-this-fire-alive tough. Jay, over the years, has proven all the naysayers wrong - from toilet training (he was finally out of nappies around his 6th birthday), to speech (he said his first discernable word at 2½ and was 4 before he had functional speech, but is now quite the chatterbox!), social interaction (don't believe the media hype - many autistic individuals love interacting with people) and intellect (he has been recognised as high-functioning autistic and on par - or even a little beyond! - his peers academically).
Yes, we have been truly blessed.
But life on the spectrum is never easy. Clicking on "The Mama Bear Files" link in the navbar above will take you to a small collection of print articles and past Lizzie's Home posts about our experiences with a special needs kid. I hope these pieces offer a small insight into the condition, but more than that, I hope that they encourage and build up others who might also be struggling within this world of ours.
Enjoy :)
* And as always, please feel free to drop me a comment on the 'index' Mama Bear Files post in the navbar above, or on any of the individual posts. Love you guys!
We are so lucky. It scares me sometimes to think how lucky we are. We know many families living on the spectrum and life really can be deep-in-your-bones, how-are-we-ever-going-to-come-through-this-fire-alive tough. Jay, over the years, has proven all the naysayers wrong - from toilet training (he was finally out of nappies around his 6th birthday), to speech (he said his first discernable word at 2½ and was 4 before he had functional speech, but is now quite the chatterbox!), social interaction (don't believe the media hype - many autistic individuals love interacting with people) and intellect (he has been recognised as high-functioning autistic and on par - or even a little beyond! - his peers academically).
Yes, we have been truly blessed.
But life on the spectrum is never easy. Clicking on "The Mama Bear Files" link in the navbar above will take you to a small collection of print articles and past Lizzie's Home posts about our experiences with a special needs kid. I hope these pieces offer a small insight into the condition, but more than that, I hope that they encourage and build up others who might also be struggling within this world of ours.
Enjoy :)
* And as always, please feel free to drop me a comment on the 'index' Mama Bear Files post in the navbar above, or on any of the individual posts. Love you guys!
3 comments:
thats the problem with the media portrayal. from what i see on the news/movies, every autistic person sits in a corner rocking and muttering/screaming until they have a sudden burst of mathematical genius that no-one else will ever be able to dupicate, then they go and play beethoven on the piano without ever having played anything before, then its back to the rocking.
people like you and your family help to get the real facts out there so other people know that its not always like that.
and the speech and toilet training.. as far as i know, my critterbug is 'normal', but he didnt fully toilet train until he was nearly 4 (nights dont count. we're still working on that), and didnt talk until he was nearly 2. now i often wish he'd shut up for more than 5 minutes at a time.
Sarah - yes, it's a bit of a problem in movies/TV isn't it? Savantism (Rainman, Mercury Rising) is actually really rare, even within autism circles and people also forget that while there are so many families who struggle with severe autism, most people on the spectrum fall somewhere between the two extremes. But you never see the 'ordinary autistics' on TV. You see the families who DON'T cope. The mothers who flip out and do something horrible and drastic because they're not coping. That english guy. Never kids like Jay. They're cool too! LOL.
We have a son born November 4th, 1998 - our fourth, Sam.
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