About two and a half years ago Diva Girl was diagnosed with Childhood Disintegrative Disorder. I remember going home and Googling and thinking "That's it? That's all the information there is?" because it was the same three to five paragraphs over and over again. The information was brief and the prognosis was grim. For the first time in my life, research had failed me.
For the most part, we tell people Diva Girl has Autism. The symptoms are similar, they are under the same "umbrella" of disorders, and it's easier for people to understand. We take her to an autism center, all of her friends have autism, and there are even doctors that we see that just consider her a child with autism. But always in the back of my mind there has been this knowledge- she has CDD. We've known that it makes a difference, even without understanding how.
Recently a therapist that has worked with her for a few years told me that after all the kids that she has worked with on the spectrum, Diva Girl is different. She told me it was time to dig a little deeper to find some possible explanations for what we are seeing. So I went home and started looking. And again, research failed me.
I got mad.
And apparently when I get mad I do things that I would NEVER do.
Like email the Yale doctor who is the only one doing research on CDD.
And then call him when he asks to talk to me over the phone.
I thought I was going to hyperventilate. I don't even like talking to people I know on the phone. So talking to a guy who is pretty much THE authority on CDD had me going into full freak out mode.
In the end, I think it is possibly one of the best things I could have ever done for Diva Girl. I finally feel like I understand her, for the first time in over two years. I finally get why she does some of the things she does. I learned about how her brain works and why she has these periods of time when she becomes fearful and emotional.
Knowledge. It's a beautiful thing.
Knowledge. It's a beautiful thing.
I'd love to know more about CDD, please (shame on me for not knowing since I work with children w special needs and went to school for it). I also appreciate that when you talk about your little lady you still refer to her with 'has Autism' rather than 'is Autistic'. I've been in a couple of debates about the appropriate usage with some people.
ReplyDeleteRenee, sorry for the delayed response! I have been busy making tweaks to the blog, and then decided to move it, and forgot to reply to this!
DeleteHonestly, there isn't a lot out there about CDD because there aren't very many people out there with it. Most people can work with children with special needs their whole lives and never meet a kid with CDD, so don't feel bad that you don't know about it! the main difference that we see between it and regular ol Autism is that she deals more with continual, serious regressions. And fear is a huge issue as well. This is a great article with some researched insight: http://yaledailynews.com/blog/2012/02/07/imaging-tech-helps-clear-up-a-cloudy-disease/
And this gives you a bit more info with the basics of it: http://childstudycenter.yale.edu/autism/information/cdd.aspx
And yes, I tend to use people-first language. But I actually have met people with autism who prefer to be called Autistic, so I think that it can be tricky. I don't take issue with people who don't use people-first language if their intent is good, you know? But at this point, when I talk about my kids, I tend to say that they "have Autism" or "are on the Autism spectrum".
I hope you continue to follow me over at my new spot (flappingspinninggrinning.blogspot.com)! Thanks for commenting!