Saturday, May 25, 2013

On Reading the Label

Ryan has officially been diagnosed with Asperger's Syndrome.

Why we don't take the kids out to eat much!

"Good news," texted Catherine, "Now you can get the help you need."

The psychologist showed me preliminary results from cognitive and academic tests, all of which were just fine, and then the test that screens for autistic spectrum disorders (since they are taking Asperger's out as an official diagnosis, Ryan will now be considered high-functioning autistic). 

Even I was surprised at how high she scored.  99% in most things.

So, yeah, we're pretty sure she's on that spectrum.  (The preliminary tests showed she IS on the spectrum, further testing in two weeks will show how impaired she is by it.)

Serious study of Schleich horse catalogue while wearing her self-knit rainbow scarf.  In the car. In 30 degree weather.

In filling out further questions on Ryan's behaviour, it is more and more unbelievable to me that the psychologists in Germany missed such a pretty straight-forward case.  (Although I've just learned my cousin's child has been diagnosed as well, and in Germany, so they HAVE heard of it!)

We are so fortunate to be here.  Not only are there provisions in place for dealing with special needs children in the mainstream schools, but there is government help for families.  And there is a general acceptance of everyone's uniqueness that includes a genuine acceptance of - not just sympathy for - people with disabilities and special needs. 

There are no horses in AFL football!

"How do you feel?"  asked the psychologist.


I do get teary eyed every so often as I consider that my child has autism.  My beautiful baby girl has something going on in her head that makes life harder for her.  It keeps her from organising her thoughts, from self-motivating, from starting, seeing through and finishing projects, from remembering basic maths concepts, from tying details up into a big, coherent whole.  It makes it hard for her to get up out of bed in the morning.  It keeps her from making friends.

I would have been devastated if I had known this when she was first born.  Or worse yet, in utero.  My perfect child is well, frankly, less-than-perfect.  My baby girl is less.  I figured my skills at parenting would be to show the world to my child, to have her soar and excel, to rise above, sail beyond, offer her all the opportunity to soar.

I didn't think it would be reviewing basic maths facts again as she glowers at me with dislike.  Sitting in silence next to her waiting for a dance performance to begin, while all the other families around us chat and laugh with one another.  Because Ryan doesn't want to speak to me - she is concentrating on the show - and cringes when I put my arms around her.  Or teaching her how to shave her legs, something I learned with my best friend, Jenny.  Because I am her best friend.  I am her only friend.  And the enemy that makes her get up in the morning at the same time.
Miley Cyrus impersonation in Caboolture
It's also hearing how brilliant she is when she goes for her weekly riding lesson, how mature and motivated and responsible.  Uh yeah, she can't fit in with people her age at school, but I bet she can get a job working with horses the minute she hits legal age! 

It's watching her belly dance at a seminar with about a dozen other people, all women older than she is, and many of them professional dancers.  And holding her own.

It's enjoying her bond with her flute teacher at her weekly lessons, quietly, through their shared love of the music.

It's allowing her the time to sketch, and watching that talent grow.

It's realising that the silly little book she has been reading on her tablet - My Little Pony -  is actually written on an adult reading level!  Even if it is about Celestia and the Magic Kingdom.

It's understanding that her love of these shows - including all her horse shows - is also the way she navigates human relationships.  That she relates to the gang on "Friends" as friends.  That she learns her life's lessons from "Heartland" and "Twilight" and "Saddle Club" relationships.

It's acknowledging that maybe this is better than the crap she would be picking up at high school!!!

It is knowing that I am going to be leading her on this journey for longer than most parents, and be more integral to the success of that journey.

It is the awareness that her specialness is a gift to us both, that it has made me stop and reevaluate what I had always taken for granted:  that one needs to struggle, to push, to excel; that one has to fit in, do what everyone else is doing, be what everyone else expects you to be. 

It is learning that I am not in control, that I am dust in the wind, blown about by the universe, that nothing is certain and nothing is permanent.

It is letting go and letting life take us all wherever it will, not where I am trying to push it to.

How do I feel?

Those test results are no surprise.  We knew she was different.  We knew she was struggling.  A diagnosis helps us explain this to any one else in her life who needs to know.  (Although, I find, now that we have the diagnosis, I feel less of a need to explain.)  It helps us get some support - both for home schooling and health care needs - that not only helps us financially, but gives me some validation that I am doing something of value, a job the government sees as valuable, that home schooling a child with special needs IS hard, is valuable and is every bit as worthy as re entering the workforce as a veterinarian.  (I know I shouldn't need this but.....)

Most importantly, it gets us help if she does choose to go back to school at some point, even a few days a week.  It gets her help at university.  It gets us both help now, in learning how to cope, how to learn, how to grow, and how to stay happy.

We are happy.  And we have been doing quite well.

I don't think much will change in our daily lives just because of the diagnosis.

It's just nice to finally have it acknowledged that there IS something going on, that it isn't my fault, or Ryan's fault, or some flaw in my parenting or our home life.  That Ryan doesn't need to buck up and fit the system, toe the line, get with the program.

And yes, this is what I heard in Germany.  And sorry, dear friends in English Group, I know you cared about us, but I heard that this is what you had been saying.  It hurt me.  And it made me isolate myself, at the end, from a great bunch of ladies who got me through the darkest times of my life.  You were there when I was depressed, you were there when I went into the loony bin, you were there through the miscarriages. 

I don't think any of us understood at the time - and it was the months before we left Germany too - that I was fighting for my child, that my anger was a result of the helplessness I felt in the face of a system that just wasn't going to help her.

How do I feel?

Exhausted.  I feel like I am at the end of a huge struggle that started when Ryan entered first grade.

Vindicated.  That I was fighting for the right thing.  That what I felt - and did - was right.

Sad.  That there was so much anger in me.  Sad that it did cost me the closeness of friendships I valued.

Hopeful.  Because we are on the right path.  And because anything is possible.

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