Thursday, November 09, 2006



WHEN REALITY BITES

The other day I was sitting in the doctor’s office for what seemed like a million years (I think it’s in the Hippocratic oath to make your patient wait at least 45 min’s past their appointment time). I could get into a whole other story on that medical appointment alone; but I’ll spare the details since none of it was monumental. Anyways, a middle-aged woman comes in with her daughter, who looked to be about 11 or 12 years old. From the moment she walked in, I could tell she wasn’t a typical child. It wasn’t something you could easily define; you could just tell that she had a disability. Being a parent of a disabled child, I feel drawn to other parents and their children. It’s like an unspoken connection. But I also know how it feels for people to stare, so I kept to myself. Then I heard the mother softly tell the receptionist that her daughter was autistic. All my common sense knowing that I shouldn’t stare went out of the window right then and there.
I have had the opportunity to see many autistic children in the past few years. Most of them have been pre-school age, and most of them boys. However, I have never met an autistic girl that was pre-teen or older. Mostly because it’s rarer in girls; and also I haven’t had much exposure to older children or even adults with autism. I’ve always been the minority parent in that aspect. All the other autism mom’s have sons.... and most schools or programs get really excited when a girl is added to the mix (as weird as that may sound). To them, a girl is a trophy they don’t get very often. At this age, being a parent of a girl or boy with autism is kind of irrelevant really. They are all just little kids with their own little quirks. Most of the time, we just talk about diagnoses, therapy and all the rimaramole associated with it.
It has been two years since Kierra was diagnosed with autism. It’s something I’ve grappled with for a long time, but I’ve come to terms with it and have, for the most part, accepted it. But seeing that girl gave me a window into the future. It was almost uncanny really. She was tall and had pretty blonde hair - just like Kierra. It was like at that moment I could identify all those autistic characteristics and see them plain as day. Just her inability to attend to the situation reminded me of what we work daily in therapy on with Kierra. Of course I had Karis with me, since the twins were at school, and she was wandering about the office. There is a huge aquarium and Karis wanted me to show her the fish. As we stood there, the girl came over to the tank to see the fish as well. Karis kept telling her about the fish in her squeaky voice. I think the mother wasn’t sure; and so she came too and stood there awkwardly. Neither one of us looked at one another. Just kind of both stood there absently as our children looked at the fish. Part of me wanted to tell her it was fine, I understood. But I couldn’t stop stealing looks at this girl, who watched the fish and then just looked at me and gave me this huge, shy smile.
After a while, they were called into their appointment, I was sitting there with Karis. I kept thinking of the mother and how emotionally drained she looked. I wonder if that’s how I look to other people. I wonder what her experiences these past years with her daughter have been like for her. I wonder where my journey with Kierra will take me. I mostly thought about the biggest realization I’ve had about Kierra since we was diagnosed. It was the realization that no matter what we do, no matter how hard we work... I can never take autism out of Kierra. I can’t cure her. I can only do the best I can as her mother and hope it’s enough. I guess any parent would say that about any child. But I wonder if there will ever come a time when it all comes to a head, and we’ve done all we can and have to let her use what she’s learned. Thinking like that makes me feel useless and somewhat stupid. Like I’m wallowing in self-pity about something I can’t control. When I could feel that burn of tears in my eyes, I knew that maybe I’m not as "over" what’s happened to our daughter as I thought I was. I think it’s a lot about fear: the uncertainty of her future. I love my daughter forever and a day. She is part of my being that completes me. I can only wonder if in 10 years, I’ll be somewhere with her and there is going to be another mother of autism, who is crying inside too.

2 comments:

Anonymous said...

Elle you are a wonderful loving mother and your beautiful girls..all 3 of them will go out in this world and achieve everything they want because you will have made sure they have learned to go for their dreams and goals. You are one of the strongest mothers there is out there.

Elle said...

Kris, I love you! You just know how to say the right thing to make me feel better. MWAH!