Friday, April 4, 2008

Never Say Never

"It feels like my legs are on fire and a million ants are crawling up my arms," Carly has written about the urge to hit herself.
I watched a recent piece on W5 about Carly. A young girl with autism who, after extensive ABA therapy, finally found a way to communicate. With the use of a laptop.

And although I watched the show with interest, I must admit that it slipped my mind until I read a reference to Carly at Mother of Shrek.

But it's a story that really needs telling.

A 13-year-old named Carly is challenging the conventional notions of autism, demonstrating emotional skills that lay hidden for years, until one day, a computer helped her reveal to the world what it's like to have her condition.

From an early age, it was clear Carly had autism. As a young girl, she would often rock back and forth for minutes on end, flail her arms and hit herself repeatedly. Equally troubling, she never gained the ability to speak.

Never say never. When Carly was 10, after years of intensive therapy, she surprised everyone.

Working with a computer equipped with pictures and symbols, she started typing and spelling words. At first it was just words -- help, hurt, head, teeth -- but soon she was assembling sentences.

She typed slowly, using only one finger, and the words she wrote stunned all who knew her.
As Carly learned to write better, she began describing what it was like to have autism and why she does what she does, such as making odd noises and hitting herself. It's riveting and in many ways heartbreaking to discover what it's like to be Carly, to be in her skin and in her head.

Besides the original story, you can read excerpts from some of Carly's recent conversations with her therapists. Here is just a sample:
My mom asked me a question that no one ever asks me What do I want
I want not to feel whats happening in my body I want to stay at home and not go to the farm I want to be like every other kid But I cant
Because I am carly
I cant sit for long times or even walk past an object with out having figths in my head I no I cant take that but my mind is fighting with me
I want to be able to go to a school with normal kids but not have to worry about them getting up set or scarred if I cant help myself and hit a table or scream
I want to be able to read a book by myself without having to tell my self to sit still and not close the book and follow each word and concentrate
I want to sit at a table with my mom and dad and worry about my body might do that I might not be able to control
I want to be able to talk to people and have them understand me the first time not respell over and over again Its to hard

Would you do me a favour?

If you are fortunate enough to have a 'typical' child in your life, take a moment to stop and reflect. And appreciate, yet once again, what you have. How fortunate you are to have been blessed with what so many take for granted.

And if your life is blessed with a challenged child, be they autistic, mentally or physically challenged ...

Many years ago, a friend made the comment that these kids aren't just 'challenged', they're also 'challenging'. So somewhere in the midst of all that challenging behaviour, pause to take a deep breath and think for a moment about Carly. And what it might be like to be in your child's skin.

And remember ... 'never say never'.


Punkys Dilemma said...

Thank you for reminding me to be grateful. I always am, of my little pumpkin. But reflecting on what she can and can't do is really a blessing.

Casdok said...

As you say its riveting reading.

doorkeeper said...

I hope one day that Carly and her mother or therapists, whoever, write her whole story. There are clues there...I pray the rest of us can find ways "into" the world of our dear ones who cannot yet express themselves.