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.
It will take time to get used to this diagnosis, but remember that Finleigh is Finleigh! No label can chance that!
ReplyDeleteI'm glad that you will be getting more help now. That's one plus side of getting a diagnosis!
That's great about having some good doctors and appointments. And a relief to hear that they have at least a partial diagnosis for Finleigh. Hopefully that will help you get some more of the help and support you need for her. And, I agree she IS gorgeous and cute as can be.
ReplyDeleteGlad to hear there was some news after all this time.
we love you guys. xox
ReplyDeleteI am the mother of a 28 y/o with severe autism. We had success working with some of the ABA type programs. Unfortunately, these programs were not introduced to us until he was age 10. We believe he would have done better had we started at an earlier age. Do not give up. Do not believe the naysayers. Take the help that is offered. Be consistent in all areas. Your daughter can be much more than some will tell you. Best of luck.
ReplyDeleteWow, those are a lot of terms to take in. I'm so glad that you are starting to get some answers, which will also mean that you can start to get the help that you need too.
ReplyDeleteYour daughter is beautiful! My son also was diagnosed with ASD last year at almost age 4. It's a range of emotions when getting this diagnosis, I know. The behavioral therapy is wonderful and has made significant changes in my son. I hope your continued journey goes smoothly.
ReplyDeleteYour daughter is beautiful! My son also was diagnosed with ASD last year at almost age 4. It's a range of emotions when getting this diagnosis, I know. The behavioral therapy is wonderful and has made significant changes in my son. I hope your continued journey goes smoothly.
ReplyDeleteI don't know you, but I will pray for you. It must be a difficult diagnosis, but you are fortunate to have one. Friends of ours have a 9 year old with Autism, and the "experts" keep dancing around the diagnosis. Thus, they don't get the help that they deserve. You are blessed to have the support you need.
ReplyDeleteSOOOO glad that the appointments were encouraging overall this time around. Glad to for a diagnosis - if all it can get for you is a bunch of help it will be so worth it!!
ReplyDeleteAnd its true, she is gorgeous!
love you.