Friday, July 3, 2009
Who is this thief that sneaks into Grace's life and steals her away from normalcy?
Wednesday was a heart-breaker and a heart-maker, all in the span of two hours. She had speech therapy with Rebecca. I took the kid and read in the waiting room until she was done. Afterward, Rebecca walked her out and revealed to me (and other people around us) that Grace performed well on her speech in a controlled situation. But in a pragmatic setting, she cannot seem to get the words out. In other words, she lacks the words necessary for social dialogue. She couldn't answer the question: What kind of furniture do you have in your bedroom?
Well, Grace looked at the floor, shuffled her feet. This all seemed so familiar to me; a year ago at Geissinger the doctor asked Grace why fire was dangerous. She looked around, pointed at the ceiling sprinkler and said: "Look, water!" There was a connection, but it was more of disconnect.
So here she is, a year later, and Rebecca brings this up in front of the kid and in front of strangers. Feeling sorry for her as we walked to the car, I said: Hey, guess what kind of furniture I had in my room? I have a computer, a desk, a tv, a chair... Well, with that, she let out a big little-girl sigh: "I'm not smart, Mom. I'm dumb." My heart sank. I felt horrible. I talked about her grades, her ability to do math, to write her name, to read some words. Nothing except the same response: "I'm not smart, Mom. I'm dumb." But by now, it was followed by tears and head that hung so low. She was like a young Cindy Brady, blonde innocence and no front teeth and all lisp.
I could not say or do anything to change her mind. Instead, I stopped trying to convince her. As I drove on the highway, I reached behind to the back seat. She found my hand, latched on tightly, and we headed home in silence.
Fast-forward two hours.
By now, she had quietly recovered. We headed to the Lehigh Parkway to watch Mark run a 5K. She typically seems to ignore him at races and, instead, looks for rocks to skip in the creek, much to the annoyance of the fishermen. But this day was, indeed, different. As we stood on the footbridge, she stopped and watched for him. As he passed beneath us in the lead pack, she yelled: "Go Daddy, go Daddy. Run fast..." She scurried to the other side of the bridge to watch his back. We then walked to the other side of the path where he'd pass on the Two Mile mark. She waited for him. As he eventually ran toward her, she yelled: "Go Daddy. You're the best daddy in the world. I love you, Daddy." She beamed as she watched him forge ahead in the evening humidity.
Eventually, he headed up to the end loop and returned toward the finish. And she waited a third time. And again, she shouted words of encouragement, more than anyone else was yelling for their runners. The people around her smiled. I'd like to think she noticed their approval, but I'm not certain.
Autism is a strange creature. It has robbed her of so many options in life, perhaps even the ability to live on her own some day. But it has done one thing: it has made us acutely aware of all of her actions and all of her words. We pay close attention to her because we have to help her feel successful, help her feel supported, help her recover from her pitfalls. And in turn, maybe she has learned to support others in the process. Perhaps she is not as GraCentric as we think. And that is a wonderful thing.