Today we went to yet a couple more follow-up doctor's appointments (this is what you do on school breaks when your kid has multiple medical issues).
Anyway, one of the exams was an eye exam where the doctor was trying to see if Ellie could see some squares filled with increasingly thin and close stripes. I wasn't sure if he wanted me to prompt her or what I should do. I could tell that Ellie wasn't sure what he wanted because he was just flashing these things in front of her face trying to see where she was looking. She was looking at him. At one point she laughed because he looked like he was playing peekaboo behind the card as he shifted from side to side to look at her face (Ellie was checking out all the gadgets - because she is a gadget girl and loves all things electronic). He didn't even crack a smile. And when Ellie laughs and you don't it is truly indicative of a limited sense of humor. She has the best laugh.
So when he was switching cards I said, "I think she is unsure of what you want her to do (because you haven't asked her to do anything!). Do you think it would help if we asked her to point to the picture?"
His response was, "She could do that?!"
Me, "Yes, that is how she communicates with us by making choices and spelling everything to us all day."
Dr., "Oh great."
The good news is that after that, Ellie picked out quite a few of the pictures resulting in better vision than the last time. The assumption he was making after reading Ellie's diagnosis, before meeting her, and neglecting to ask me what her skills were, and because she was silent because she is still under the weather, was that she didn't have the cognitive abilities to pick out a picture image on a page or communicate in a way that would be meaningful. That may seem like a leap, but after he saw Ellie respond appropriately to her requests he used her name more, he looked at her more, and overall waited for her responses and ques during the exam. Good for him shifting gears. I wonder if the next time he reads about a kid with brain damage, PVL, CP, acquired Hydrocephalus, etc, etc. he will remember Ellie and not judge them by their medical history. Ellie could use the benefit of the doubt and so can anyone who is different than the norm.
As a parent I realize that I am still Ellie's best advocate (i.e. Warrior Mama!). I had to advocate a lot for her today. The good news is it's not so difficult anymore or as tiring. It's just par for the course.
