We are infinitely more than our limitations or our afflictions
—Jeffrey R Holland
We interviewed several occupational therapists recently and three asked: Can you tell me the story of Creative. Why did you start it?
One of the reasons was the Kiles.
I first met and become friends with the Kiles over 30 years ago when I lived in Edgewood, Pennsylvania, a near suburb of Pittsburgh. The Kiles had two daughters, Sally and Suzy, who were about the same age as my youngest daughter, Dawn, and they all played together.
Suzy was a child with Down Syndrome. One day Suzy’s mother Ellen told me what had happened when Suzy was first diagnosed.
The doctor was a well known expert in his field practicing at the prestigious University of Pittsburgh Medical Center.
That doctor told the Kiles that Suzy “wasn’t going to make it.”
Ellen looked right at him and said: “Suzy is my daughter and she will make it. I will make sure of that.”
Not only did she make it under Ellen’s care, but Suzy flourished.
I was fortunate enough to get to know Suzy. I used to take my children on excursions to museums and other places of interest. One weekend Dawn asked if we could take Sally and Suzy. I said it should be okay but I’d have to check with Ellen.
I went to the Kiles’ house and asked Ellen:
“I’d like to take the girls to the Carnegie Museum. I know that Suzy has a shunt. Is it okay that I take her? Is there anything I need to look out for?”
I’ll never forget Ellen looking at me, staring silently for a long time. I thought I might have said something inappropriate, crossed a boundary that I wasn’t aware of. Finally, she said:
“I’m sorry. I was never asked that question and never thought about it. No one has ever asked to take Suzy anywhere.
“It will be fine. If something happens all you or me or anyone can do is call 911. And it’s very unlikely.”
Time to time through the years Sally and Suzy and Dawn and me had fun excursions. Suzy was thriving, loving, and curious, a joy to be with. Eventually I moved away and lost touch with the Kiles, but they will always be in my heart, inspiring me. I often think of Ellen’s response to the doctor and the excursions with Dawn and Sally and Suzy, the sweet girl no one thought to take anywhere.
The Kiles are my heroes and one of the reasons I co-founded Creative. Here we affirm the unlimited potential in each of us.
By the way, we hired one of those therapists, a wonderful OT named Liz Souza (no relationship to and spelled differently than John Philip). She’ll start at the end of the month.
(The names of the family were changed for their privacy. The story is true.)
My next article on this theme will address the dangers of pejorative terminology.
— Richard Feingold, Co-founder