So we go see the specialist in “augmentative communication.” Fancy words. They try to figure out how to get basic communication going. We first saw them about 6 years ago when she was 10. One of the best hospitals in the country, so they say. They did not help. We went with my daughter, her teacher, a therapist or two, their specialists. It was a party.
It all centered on finding out what my daughter could do, repeatedly and intentionally. That’s an easy one to answer. Nada. Zip. Nothing.
We went again yesterday. This time, a new office, new place, same head guy, a little more eccentric now, new teacher, no mother (couldn’t make it? didn’t bother?), and the head guy’s resident or something. She just took notes. Lots of them.
My daughter? Didn’t demonstrate anything more. There were some helpful suggestions for what the school can do in trying to find a repeatable intentional action. Seems moot to me, but on the other hand, I want this more than anything else. I really do. A simple yes / no. Is that asking so much? “Does it hurt here?” “Are you hungry?”
We generally watch one of two shows a lot around here. CSI: Miami and Spongebob Squarepants. What can I say? I love SpongeBob and she loves that strange guy with the red hair and glasses. She laughs at the gross stuff on CSI. That stuff comes on, she reacts. She reacts differently to different characters on Spongebob … oh, and loves those talking barnyard cows on that other cartoon (me too). My point? She knows what is going on. She laughs appropriately … hence, understanding. But ask if she likes Spongebob or Patrick or Gary … nothing. But say “that’s gross” when CSI shows blood gushing and she will laugh and react.
After a two hour meeting, I turned to the head guy and asked, literally, “So, any chance in hell we’ll get anywhere?” … “Sorry, I don’t know.”
No one knows. Freaking 16 years old and never told me she loves me. Can’t even get a kiss when I put my cheek on her lips. Sixteen years and never a “thanks for stopping that seizure dad.” Hell, I’d settle for a “Dad, you’re such an idiot.”
Gotta go clear my plate for more …