22 October 2010

I am humbled by the amount that I don't know. Listening to a lecture today about what I was complaining about this morning. Testing, diagnosis, evaluations, prodromes, biological markers, symptoms. And then about insurance, the waiver program, policy. Watching a video of the administration of an evaluation, and I am sucked into the kid's world.

I am ready to cry out, why did it take so long to learn about this world?

Okay, somewhat dramatic.

Because of the reading and the lecture, I now see why Julia was so hard to test. Not being an English speaker and more, having a shaky grasp of Western family life, had the potential of squewing the results. Culture and language are hard to factor in -- and what had she been taught. That we will never know. A child who has never been played with, has never shared attention with a caregiver, or who has never been rewarded with smiles for eye contact or cooing, how can this child be judged at all. What score makes sense? We were lucky. We had no idea how lucky that Julia was diagnosed and that therapy was what she needed. She had some very lucky stars in her corner. No other way to describe it.

I am excited by the possibilities. Still too new to make any decisions or see the clear directions, but very happy being carried along by the current. Absorbing what I can and knowing for sure that I will have to revisit much of the material that I am reading. I just don't understand it on any deep level at all. It is as if I am skimming and at times I do because my grasp of the material is so shallow.

Hopefully, I will be able to see one or more evaluations in person. Hopefully, I will soon find a policy to work on. Hopefully, I will soon have a grasp on how my leadership project will be shaped.

There is a new online course on ASD that anyone can watch. I want to watch it right away but I have to finish my SW course before I start. I can't take on more right now. But maybe I can preview it a bit and see what I can learn there.

And Julia: She is feeling a bit better. Her cough, though still sounding awful is less, and her spirits are definitely higher. She went on a class trip today and I got an email report which sounded good. Julia did need to leave a space when the music was too loud. I want to find out whether she asked to leave or just acted like she couldn't stand the sound. I have to ask. Right now, she and her therapist are working on a 300 piece puzzle which has been worked on over the last two days. It will take a few more to finish it. Julia has given full attention to the work but has also transitioned out of the work when asked to.

I write of all these successes. And I am so happy about them. But I know she still has so far to go. I do dare to dream that one day she will "catch up" and join her peers. I do dare to think about her future.

And of course, then I hear the shouts of "No-o-o-o" from downstairs.

Good reality check.

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