Cook please

Maggie was in her chair with her communication device hooked up and I was working on the computer when I heard the computerized voice say:

“Cook, please”

No. I would rather not. It is three in the afternoon and I am trying to finish this project.

“Mom, cook please”

Maggie, I can’t right now. It’s not time to eat and we are hanging out in here doing this.

“Mom, cook please.”

I look at Maggie and finally get that she is trying to tell me something. I ask her, “Do you want to go in the kitchen?” Her hand flies up to her mouth – her sign for “yes”. Ok, kiddo, let’s go.

That exchange happened sometime this summer. It was a huge breakthrough. Maggie was using her communication device to express something she wanted without prompting. And she improvised using the limited choices on her talker. There was no place to say, “I want to go in the kitchen.” Therefore, she got her point across using the “cook” button.

You have to think for a minute about how smart that is. Those of us who speak, read and write do things like that all the time. We take them for granted and do not realize what a complicated cognitive functions they require. It is automatic for most of us. It is not automatic for Maggie. Every step of that process is difficult and deliberate. It is amazing.

Maggie’s frame of reference is very different from yours and mine. She doesn’t eat regular food; she is fed a special prescribed medical food through a tube in her stomach. She does not cook and she does not generally even watch anyone cook. She does not spend much time in the kitchen because of the configuration of the house and the difficulty of maneuvering the wheelchair. Nevertheless, she had to employ and improvise on all those concepts to put together that particular string of words to convey her message.

Now we hang out in the kitchen a lot. I get her into the kitchen and she “cooks.” Of course, that word means something different to her than it does to me. Maggie “cooks” by opening and closing the refrigerator a hundred times and by opening any drawer she can reach to pull all the contents out. (We keep her away from the knife drawer). Before we “cook”, I have to push everything breakable or dangerous well out of her reach.

It is entirely possible that Maggie has been using her communication device to express her wants and needs for some time and I am only now noticing it. Communication by definition is a two way street. One party has to be open and receptive to the communication. In this scenario, that is my job. I need to listen closer and perhaps translate a little. What else is she trying to say to me?

Maggie may be brilliant, but her mom is a little slow on the uptake. “Mom, think please.”