A Mommy Story

You might remember back in May, when I took Cordy for medical evaluation to determine if she really had an autism spectrum disorder, or if the educational evaluation she had at three years old was simply a bad, bad, bad day.

I was supposed to receive the results in a month. It took two and a half months, due to a slight processing error in payment from the Franklin Co. MRDD board. (Yes, they paid for it, and they recommended it. Thank you, citizens of Franklin County – it was a far better use of your tax dollars than some of the projects out there.)

Eventually I stopped wondering when the results would arrive. Maybe Cordy did such a good job at her evaluation that they saw no point in wasting a stamp? Maybe they laughed so hard at my worries that something wasn’t right with my child that they forgot to send the results?

Then, just a couple of days before I left for BlogHer, a thick envelope appeared in our mailbox. And while I read it that day, I’m mentally and emotionally still processing what that envelope contained, even now. It’s hard to see your child broken down into a series of behaviors and scores. It’s hard to read the words of how your child is different from others, not sure of what challenges will you both face in the future.

I’ll share one part of the summary for all of you. These are the words that occasionally float through my head, leaving me wondering what our next steps will be:

Cordelia is a nearly 5-year-old girl classified at school as having PDD-NOS. She has a history of social deficits, adaptive behavior delays, and sensory regulation difficulties. Her cognitive scores indicate average cognitive ability. Her autism screening scores indicate that Cordelia does display many characteristics consistent with an Autism Spectrum Disorder, such as PDD-NOS. Cordelia’s scores consistently show difficulties with sensory issues, social pragmatic difficulties, resistance to change, emotional and arousal regulation difficulties, and social approach difficulties.

She, however, also displays very strong cognitive skills and expressive language skills. Many of her scores on the ADOS and PDDBI (screening tests) indicate difficulties that are indicative of a pervasive developmental delay but not specifically indicative of (classic) autism. Thus, at this time, it seems a diagnosis of PDD-NOS is most appropriate.

They want to further evaluate Cordy when she’s a little older, thinking that she may eventually fit into the Aspergers label, and possibly ADD, too. Lots of new therapy ideas were thrown around, too. Expensive therapies. Therapies not at all covered by my new health insurance, who tells me that autism is an “incurable, non-treatable condition”. But that’s a rant for another day…

A few of the special needs bloggers got to hear more about this while at BlogHer. I needed to tell someone outside of family – someone who would understand that anything I said at that time wasn’t necessarily what I really meant, but was instead a reaction I was still working my way through – and they were the ones who were most likely to understand.

So at the point I can’t fully express what’s in my heart. I don’t even know what’s fully in my heart. But last week I attended the kick-off for the Columbus Walk Now for Autism event, listening to other families bravely speak to a room full of people about the challenges they’ve faced and also the joys they’ve experienced. I cried. A lot. And I’m already signed up to walk again this year. I want my team to raise $1000 this year, doubling what we raised last year.

This much I do know: Cordy is on the autism spectrum, and once I organize my thoughts, the mama bear in me will be fired up again to fight for anything my little girl needs.

(And thank you, thank you to all of you who have provided me with so much support as we’ve gone down this road with Cordy. Your comments, your e-mails, your words of love have carried me through to this point, and I don’t know what I would have done without this community. You’re all lovely.)