For those of you who are just joining us...

For those of you who are just joining us...

Here's the latest on the girlie, aka 'squirrely-girl' 'monkey girl' 'goofball' and sometimes just plain 'Tesla':

Girlie is now 4.3 years old. We're seeing an immunologist next week to go over some blood tests we took not long ago and hopefully we'll get some insight to T's recurrent low-grade fevers. We know there's still a problem, but we don't know what it is.

The real problem we often face with doctors who see her is disbelief. They shake their heads, or shrug their shoulders when we say that at 19 months she was clearly 'autistic'. "Well," they say, "maybe some kids just out-grow that sort of thing."

This, from a highly trained, well-paid professional. I could get that kind of assessment, FREE, from family members, thanks.

Kids don't outgrow autistic behaviors. Their bodies may heal, their immune systems may strengthen, they may be naturally bright and respond well to their remediative therapies--but they don't "outgrow" their illness.

To insist on that conclusion also denies the efforts parents put into researching and implementing those therapies, which may be anything from simple speech therapy twice a week to a complete lifestyle rennovation that transforms every aspect of family life--from the food we put on the table (and where it comes from!) to how we shop, when/where we go to church, mow the lawn, wash the clothes...

So back to now.

T is now considered by most who see her as having PDD-NOS. This is short-hand for Pediatrician Didn't Decide-Neurologically Odd (S)Daughter. I call it 'the Noddies'. This means she doesn't qualify for the most obvious signs of autism--the lack of reciprocity in any form of communication, or lack of eye-contact, repetitive behaviors, etc. She's just obviously delayed in language and social skills, prefers interactions with adults to her peers, and has problems with sensory processing. PDD-NOS is really just a diagnostic dumping ground for kids who aren't really autistic or ADHD, just odd.

And that's odd in itself. That science, which loves precision, would have such an imprecise description of my girl.

It's frustrating, let me tell you. We love to name things, contain them with our words, but some things and most people can't be controlled like that. I can say that T is PDD-NOS, but that doesn't really describe her. I can say that she's a year and half delayed in every aspect of her development except that she's good sized and can read and count like a kid half-way through kindergarten, and she's yet to officially start preschool--but that still wouldn't describe her. But to get the help we need, we must name and describe and quantify the girl.

Last week I spoke to the supervisor of the before/after-care class at g's elementary school where she is now enrolled through a state program. I wanted T to have some extra time about three days a week, to play at school with other kids. As an extroverted kid (yes, one of my newest discoveries), and an only child, she craves attention and loves school, so I thought this'd be a great idea. And she's doing soooo well in her preschool class with all the other 'regular' kids.
But no. This is not to be. The supervisor said T would need a full-time aid, and they just didn't have one. Sorry. But she'll tell me if they get one...But there might be too many kids in the class, anyway...

I can read body language; I can read unspoken messages. This woman does not want to deal with T.

I went home a bit sad, and more than a bit frustrated. But I didn't cry like I did last spring when the play gym called and politely explained that T could not continue in the class without an aid. I was so hopeful and excited for her; we had come so far...but no.

Will we be in this place, this "I don't see what your problem is" but "I can't handle your child" place for long?

I look back over the last 2.5 years and see a lifetime of differences. We began in anger and fear, dispairing for our future with a child who could not understand language in any form and who shrieked at night and wouldn't look at us--only at videos. And yet here we are now--laughing and joking with T, watching her true personality emerge as she feels better and better, reveling in the joy of her love of learning.

We have come so far. Too far to be believed, and yet but not far enough for some.