You might remember back in May, when I took Cordy for a 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.)
I’m so sorry you’re having to fight for what you know as a mother to be true. Health care would be a lot less expensive if doctors would just learn to listen to mothers.
Big hugs to you. I know this isn’t easy.
Sweetie, I’m sorry you’re having to travel this path, but know this: the best thing your daughter has going for her is YOU. I have ADHD and dyspraxia, and my parents stood by me and fought for me every step of the way when I was a child, and it meant more than I can say to know that my parents supported me like that. Your daughter is a lucky girl to have you.
Sputtering with rage over the “untreatable condition” thing.
Also aching to hug you guys, confident that this diagnosis will lead to Good Things for Cordy, and vanish into a fat folder of Old Stuff for her later.
To see how much progress she has made since I started reading your blog, I’m sure that you will tackle whatever comes next and succeed. She will succeed. She’s lucky to have you as a mom.
Well, imagine what her “scores” might have been if you had accepted her behavior as “untreatable” four years ago when you began to notice it. Imagine where she owuld be without such a fierce and loving advocate. And now go ahead and imagine where she will be five, ten, twenty years from now with all of us raising hell to get therapies for autism spectrum kids available and affordable. She is AWESOME.
An untreatable condition??? What the hell? That is just wrong on so many levels and completely infuriating.
You’ve been such a fierce advocate for Cordy. I know it’s exhausting but you’re doing such a fabulous job. It’s really inspiring.
Momma Bear you got this covered! I know you … you are head stong and you will prevail! I know that what every your Cordy needs you will get her – head up and know I pray for you all often!
PS Congrats on the GOOD that came out of the testing! “She, however, also displays very strong cognitive skills and expressive language skills.” that is GREAT!
“Untreatable”?!! Are you freakin’ kidding me? Looking forward to that rant and encouraging us to all change that harmful lie.
I can only echo Amelia and Amalah. That you’ve tackled so much and that in knowing, your sweet Cordy will get everything she needs – and more.
I’m a (retired) special education teacher and a parent of an now-adult child with special needs. It is very difficult to see your child broken down into a series of dispassionate statements, but it the neccesary evil of getting all the information that you can so that you can fight like crazy for your daughter.
I always tell people to be very well armed with information and to seek out the medical or educational professionals that she might need.
Consider all areas…educational, physical therapy, occupation, speech and language…everything.
I volunteered as an advocate for children with special needs and their families dealing with schools for over 10 years. I had to stop when my health declined, but I will tell you what I always told them.
Make them want to help you. Present your child as someone who deserves to achieve to her highest level. Always be polite. Always, no matter what. Present yourself in a calm, pleasant, yet firm manner. Getting upset gives people an excuse to tune you out.
Remember, you are the best advocate that your child has and you know your child best..And the notion of ‘normal’ is only a word, not a reality. We all have unique talents that might not fit in with everyone else, but that is their problem, not yours…Michelle
–Michelle–
Argh, untreatable? So not true. if they could see where DuckyBoy and his PDD classmates were 2 years ago when they started kindergarten and where they are now, they’d know there are plenty of things that HELP and WORK. Cordy is going to do great. We have square pegs in a round-hole school system, but they’ll get by, learn to deal, and be terrific people.
BTW the wording of her dx sounds a lot like what DB’s said.
Having it broken down for you is weird, isn’t it? I am still resistant to the letters attached to Justin’s name. The evaluations can’t give them or me a full picture of who he IS. Maybe of what he “has” but not of him as an individual.
Anyway. Glad they FINALLY sent the reports in. Is she still able to qualify for extra help?
I wish you, and her, much luck and support.
Keep up the great work you do, Christina. You’re truly a fighter. SO sorry for what you have to endure with Cordy, but I’m sure as she grows perhaps things will get easier. She has already seemed to grow a lot from the posts I’ve read over the last year or so.
“Incurable?” For now. So is type 2 diabetes, and we still treat that. Insurance companies make me scream.
I read your blog but don’t comment as frequently as I should. I want to echo the comments about your ability to mother Cordy. You have done an incredible job and I don’t see that changing. Stay determined for both of you. Much love and hugs to both of you. If there is anything I can do to help advocate changes in health care policy for autism please don’t hesitate to reach out to me. I may not know you and Cordy personally but whatever this momma can do to help another momma and her child I’m on board.
I don’t know if it helps you to see how other moms react to coming face to face with diagnoses and the like, but I’ve been battling the reality check myself. http://gas-food-lodging.blogspot.com/2009/08/shes-not-disabled-were-just-visiting.html
We will make it and so will our girls because we will make it all happen. We will.
It’s so hard to process those big packets of paper that come in the mail. Even now I sometimes don’t open the envelope right away. You and Cordy are really lucky to have each other.
That is why I H A T E insurance companies (for the most part.) Infuriating.
I admire you for being proactive, despite the fear and dread that can accompany that mindset.
She is and will be all the better for it.
xo