It's Time

Well, this week is finally upon us.
I knew it was coming. It's been scheduled for two months. The date and time (May 30th at 9am) are burned into my brain at this point.

It's evaluation time for Vlad! Yep, this is the big one. Diagnostic evaluation. The One that will give him the official title of Kid With Autism. How can I be so sure? Well, read The Questions if you want to know the reasoning behind my absolute confidence of what the results will be. Nothing has changed since I wrote that, not really.

This week is all about coping mechanisms for me. Tonight we will watch the new Arrested Development season until my eyelids can't stay open anymore. Tomorrow The Husband and I are having a wonderful date.   Tuesday and Wednesday are looking a bit fuzzier, but I'm pretty sure I'm going to fill my time with friends, frantic cleaning, and funny movies. If you'd like to hang out with a somewhat manic version of me, just say the word.

Yes, the anxiety (read The Line) will reach its pinnacle this week. But I'm more concerned about the aftermath. Even though I know what's coming...how will I feel on the other side? I knew with Rascal. I kind of knew with Diva Girl. But there is a difference between "knowing" and seeing the diagnosis, under your child's name, in black and white. So final.

How will I cope then? I'm not entirely sure. If I can get the funds together, I'd love to get a tattoo. No puzzle piece for me, thank you. Just a little something to remind me to be strong, to remind me that I'm not alone and even to remind me that my kids are amazing.

There is something that many of us say, that I have always said, about the act of getting a diagnosis. We say "It doesn't change the child, they are the same today as they were the day before the diagnosis. Now you just have a label that gives you access to services and a way to better help them." And it's true. It won't change him a bit. But here's the thing- It changes me.

Maybe it shouldn't. Maybe there are some parents who bounce back just fine, armed with the knowledge and ready to celebrate. But for me, it's the beginning of a path. Truth is, until the professional sits me down and tells me that it is Autism, there is a part of me that still lives in denial. The moment that back door of "Well, maybe it's just...." closes, I begin the real path to acceptance. I can go through the stages of grief (yes, grief is an appropriate word.) And I can help him discover his strengths and his joys, and begin to see a whole new future and world of potential that awaits for him.

What will happen on that path? Not entirely sure. It may involve a tattoo. A little overeating. A night with one of my best friends, sitting at Sonic, sucking down an Oreo Blast. A coffee date with a couple of girlfriends who have been here before. Maybe a few coffee dates (I really love my mochas and lattes.) Probably most importantly, it will involve holding hands with The Husband. Crying with him and laughing with him.

Coping. Accepting. Embracing.

More than a Number

I've been sitting on this post for a few days. Letting it marinade a little bit. Had to change it up a bit, but she's pretty enough to share now.

A few weeks ago, Diva Girl and Rascal had evaluations. Rascal gets a free eval as part of being a guinea pig for research (it's a study on siblings of children with autism, and it has been a wonderful experience!) For Diva Girl, the same team just flat out offered to do out of sheer curiosity, having never evaluated a child with Childhood Disintegrative Disorder. We figured it was worth it, seeing as she hadn't been evaluated in three years. Plus, her diagnosis is about to be absorbed into regular ol Autism, and we didn't want to be left with a diagnosis that doesn't exist- who knows what kind of issues could pop up because of that. 

So, I took her in. Watched her from my side of the two sided mirror. Saw her largely ignore her evaluators, except to try to force them to sit under the table with her. Laughed at how she was clearly running the show, refusing to cooperate but wanting to play HER way. Answered lots of questions about her development. 

I walked out feeling drained and dreading the results. I know that what I saw as funny and charming does not translate so well into a measure of her IQ. I know that her refusal to cooperate and talk means that her language scores would be horrible. But still, I did not expect what I saw in the report.

The report was brutal. Yes, they talk about how sweet and pleasant she is. Yes, they point out that the testing was probably not an accurate measurement of her capabilities. But when I saw the numbers...it felt like a sucker punch to the gut.

Diva Girl is six years and three months old. She did not test higher than 17 months in anything.  In one of the tests (they use several different ones) she came out as below the first percentile in everything. That doesn't even seem possible. I mean, the girl is potty trained! She can spell over a hundred words! She is wicked smart! But that's not how these tests work, I know. They take that 2 hour snapshot and determine where she is lacking and then blow up those problems until they are all you can see.

Yes, I cried. My heart broke a little.

But I know the truth. She's more than a number. She's more than the words in a psychological report. She's my Diva Girl....with a big smile, a big heart, and a penchant for acting like a cat.

I can't help what the numbers say. And I can't stop people from looking at my little girl and only seeing her "faults". But I will do everything in my power to let her shine, so the world can see that she's so much more. And you'd better believe that during next weeks IEP meeting, if they try to act like those numbers are the entirety of her abilities, I will show them that they have another thing coming to them. Mostly, she will show them.

She'll blow them all away.