While poking around the Wondertime Magazine site yesterday (and NOT looking for mentions of my upcoming story, because that would be narcissistic and weird, right?), I came across the story that had originally attracted me to the magazine in the first place. "A Different Kind of Normal", by Charlotte Meryman, detailed the story of the Foard family, of parents Michelle and Jim and their son Jimmy, who suffers from an extremely rare chromosomal disorder called Alfi's syndrome. The story ran in four parts (which was a little maddening since at the time, Wondertime only ran four issues a year), and it's an excellent exploration of the issues that face special needs families, particularly ones where communication is an issue. It's not an exaggeration to say that Meryman's story had a pretty profound influence on how my own book turned out.
What I hadn't seen before, however, were the accompanying videos, which may have been produced after the series ran. Go watch the complete four webisodes. At one point you'll see Jimmy using a slightly older version of Schuyler's Big Box of Words.
The world is full of stories like Jimmy's and Schuyler's. They deserve to be heard.
You always find the coolest stuff. Thanks for sharing with us, RRH.
ReplyDeleteHey - I'm new to your site and just read the article in Good Houskeeping. I just wanted to tell you that I REALLY needed to hear Schuyler's incredible story today. It hasn't been the best day for me, but hearing about her precious and incredible life helped me to see how selfish I am and to be thankful for all that life is. My husband works with "special needs" kids in schools and he will be the first to tell you that there is nothing more rewarding in this entire world than to watch first hand a child that can live life to the fullest even though he/she can't do everything that most people can do. I know that nothing can prepare you for what you've had to face, but thank you for sharing your life and your daughter's life with others. You will probably never meet me, Schuyler will never even know that I exist....but she has touched my life and reminded me that life is good and worth living every moment (even the less than good ones) to the fullest. Thank you, Schuyler. You and your dad (and I'm sure your mom, too) are extrodinary. I hope to hear more from you as you you grow older...and I hope that you will always remembe that you don't have to speak to touch a person's life and change it for the better.
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