Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

The Autism Dream

with 6 comments

Last Day of KindergartenWork.  Work is busy.  Work is…American.  This is the American Dream.  You puts in hard efforts, and you gets big rewards.  We all buy that, right?

I remember when we first got Pudding’s autism diagnosis (actually, Asperger’s diagnosis, but I’ll come to that) how I thought that we could extend the American Dream to apply to this situation.  The Autism Dream.  I was a new immigrant to this unfamiliar land, you’ll forgive me.

If I worked hard enough, if we did enough therapies.  If we tried this therapy, or bought this app.  If we just put in enough efforts, we’d get the rewards we deserved.

And what would those results be?  TIme has changed my answer to that, like it has so many values I took as sacrosanct.  But back then, I hoped for results and improvements, measurable values that we can find in the world of work, but impossible to apply to my daughter.

Still, I had ambition, and I was prepared to graft.

Then yesterday came the results of our reevaluation, which were at once completely expected, and a shock that has left me reeling.  We need to do frequent reevaluations to apply to international schools and set up our therapeutic programs.  That whole free and appropriate education provided by law just doesn’t apply to us overseas.

And so now we find that the Asperger diagnosis, doesn’t apply to Pudding, and should never have been given to her.

“Her language skills did not continue to develop as expected.”

Rather, she meets the criteria for the new DSM-V Autism Spectrum Disorder, with the following additions:

– Language Disorder, Not Otherwise Specified

-Disorder of Written Expression

-Learning Disorder, Not Otherwise Specified

and maintaing her Motor Coordination Disorder and ADHD diagnoses.  Just words in stark black and white.

According to the American Dream, we would work hard and overcome these obstacles, not face more and more challenges as time goes on.  As happens every time I read one of these reports, I’m heartbroken at the difference between the way we view the same child.

Am I not working hard enough to make things better for her?

Hours after reading this report, I placed my girl on the bus for her last day of Kindergarten, and I saw the contrast I needed from the cold and clinical report.  She made an incredible achievement this year.  She has learned to read and write, advocate for herself, make consistent progress, and graduate from kindergarten.

She has gained the affections and support of her peers and teachers.  She has faced the challenge of a new environment, and excelled there.  She has earned her spot in a school, and a place in the community.  She has made me proud every single day.

And that is The Autism Dream for us.  It isn’t that we can work away her challenges, it is that she can grow and develop and match them.  On paper, she doesn’t look good.  In person, she is incredible.

I’d be lying if I said this was easy.  I’m crying as I type.  But I know there isn’t a report that could be written which could ever capture how amazing this child is.  I know, because I’ve written about her for years now, and I’ve barely scratched the surface of everything I could say about her.

The Autism Dream has never been about changing her to fit in, but revealing this world and our societal standards for the imperfections that they are.  She shows me truth, joy, and love.  She shows me what is truly importantl, and I never want to wake up from that dream.

 

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Written by Spectrummy Mummy

May 31, 2013 at 3:50 pm

6 Responses

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  1. THIS: “…there isn’t a report that could be written which could ever capture how amazing this child is.” This is the crux of it. Keep writing, keep watching her blossom and sharing the journey with us. She’s a beauty in every sense. xo

    Niksmom

    May 31, 2013 at 4:01 pm

  2. Pudding is a treasure… and so are you. xx

    Bright Side of Life

    May 31, 2013 at 6:22 pm

  3. Watching her blossom and live life her way means everything. Even though it’s hard to remember that (I know how hard it is to look at the awful “paper”) it’s what we need to hold onto..because, like you say, our kids are so incredible and amazing,and that damn paper can’t possibly capture who they are…

    Lisa

    May 31, 2013 at 7:05 pm

  4. Hello I’m new but this post is so true and beautiful. Papers be damned. My Soapster doesn’t look good on them either. On papers she is globally delayed, non verbal and severely autistic. On paper she apparently has nothing valuable to offer. Well outside of papers she is a joy, a sweetie and a cheeky little monkey. I know how those words hurt (when the neurologist used the words low-functioning I felt my heart break), but people need to label, to put others in neat little boxes. Our girls don’t fit in their boxes and so they keep slapping more and labels on hoping they will stick. Much love to your precious daughter she looks a sweetie.

    Sophiestrains

    May 31, 2013 at 8:35 pm

  5. Great post. I totally hear you!

    Jackie

    June 2, 2013 at 8:04 am

  6. Beautiful. You are a wonderful and loving Mummy. Hugs from America, work, work, work.

    Full Spectrum Mama

    June 17, 2013 at 5:07 pm


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