Sunday, February 20, 2011
So, we have a diagnosis, of sorts.
First, let me just say what a pleasure it was to go to these assessments. Everyone there was so caring and attentive and treated us so well. What a wonderful departure from what we're used to in the medical system where we often feel like a number to get through. These people looked our file before we even arrived and knew what they needed to know. That was really nice.
A lot of terms were thrown around during our time there... "disorder" not delay. Finn's learning and behaviour is disordered. "Dysregulated". Her emotions are dysregulated. "Gorgeous". Don't forget that one... she really is the sweetest little thing. And we got this one too... "I dunno".
One of the neurodevelopmental pediatricians that saw Finleigh really isn't sure what's going on with Finleigh physically. We'll be seeing the Sr. physician in her department in June. With 30 some odd years experience, he will have hopefully seen what Finleigh has before. Some possibilities? Congenital Stiff Man syndrome or dyskinetic cerebral palsy. But these were not given to us in writing and are still up for discussion. Hopefully we'll know more in June.
She does have a severe communication disorder. A suspected severe motor speech disorder (suspected since she didn't let the speech pathologist see enough to be a definite). Her adaptive skills are at about the 24 month range. They couldn't test her IQ because she wouldn't let them. Severe emotional behavioral dysregulation. She has self abusive behaviors. She's impaired in social interaction and communication. She has increased muscle tone and decreased range of motion.
No big surprises there. Though kinda shocking when you see them all written together like that.
So, the diagnosis? Autism Spectrum Disorder.
The good news in all this is that we finally have a name for it. Not that it's adequate because it doesn't really explain everything that is Finleigh, but what it will give us is more support. I can't tell you how excited I am to have that extra help. Behavioral help. Speech help. Recognition that this is more than a simple delay. That's good.
We're also sad. It's not a fun diagnosis. It's hard to believe in some ways, yet not totally unexpected since it's been in the back of our mind for months now.
So that, my friends, is that. It's what we know and now we move ahead to try to get her (and us) as much help as we can possibly get.