June 12, 2010

Moving Forward


Days blend into weeks, and now a month. Getting caught up in the daily routines and successes-and a new work plan which will allow me to spend more time at home during the day with Amelie. Suddenly, it dawns on me that I have not spoken to Whitney from UCSB's Koegel Center for weeks since our Autism Evaluation. Though, at this point in my research and Ami's development, I have ruled out Autism all together in my mind, I still want to follow through. I call her and we schedule a phone conference for the next day, wherein I will hear the results of their research on my daughter.
It's the most bizarre feeling- one that, as parents, we surely face over and over again- watching helplessly as your child is observed and put under the microscope. So, I play out all of the scenarios in my head before I go to sleep that night- imagining the "worst" (Amelie is diagnosed with Aspbergers, I will call Tim and we will talk quietly, cry and make a plan. I will listen supportively to him despite my emotions. I will not be sad, but find strength in this)... to the "best" case scenario (Amelie has developed so fantastically during the last 2 months that she is deemed on-track and we can move forward into the bright future as a "normal" family. 'This was just a little developmental delay...a bump in the road!' Hell, I would even delete this blog. Case closed).

Well, like most "worst case, best case" scenarios- it did not turn out as expected. She has been identified as exhibiting enough symptoms of Autism, not Aspbergers, to require further evaluation and treatment. Since Autism is such a big umbrella these days, it seems like anything can fit under there. Looking at the 4 pages of notes I took while on the telephone with Whitney- it's literally there in black and white, though. Ami's odd and sometimes anti-social behavior... "delay and lack in expressive language" which sometimes leads to her barking like a dog to strangers or alone in the middle of the playground; "inflexible adherence to specific non-flexible routines" which almost always lead to a power-struggle and meltdown with both parents.

After I hung up the phone, I did call Tim and he came to pick me up immediately. We sat in the van and hashed out the notes from Whitney, our thoughts and fears around it and our plan. I'm not sure how it happened, but I had literally prepped myself for this the night before. I imagined the best way that Tim and I could possibly have taken this news (together, with no arguing or denials) and we made our own best case scenario happen together. He hugged me- so strong and assured that I was reminded why I chose him to be my child's father in the first place. We talked about the plan going forward, then we went and picked up Amelie in the middle of her school day just to hang out. It was nice to have a few bonding hours with our family together. I hugged her and her little hot head on my chest and cold fingers around my neck sealed the deal. We are going to be o.k.

As we were leaving, I told Donna about the call from Whitney. She said, "It's just a label. Now you know how to move forward".

I am numb, yet there's a strange feeling of relief. I see these things in her and I worry. People frequently try to assuage my apparent concern with their denial or explaining away of her odd behaviors. Unfortunately, this doesn't help the situation. It just opens up the anxiety doors for me and at the same time builds a wall. At least now I feel that my parental intuition was correct. We have our plan and can get on a sure track of "recovery", instead of this nebulous searching for some kind of answers on what's happening with our little girl. At times, my worries have manifested into the most frightening diagnoses (brain tumors; un-named, yet scary, degenerative development syndrome). Now I have a shred of a plan- upon which we can build a foundation and get her the kind of help that will really make a difference.