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Robin is a 42 year old developmentally disabled adult living in a group home in Connecticut. She has lived there for 20 years. At ten months old we were told that she would never walk, talk, read, or write. She was diagnosed with cerebral palsy, and seizures. She has walked - in fact was special olympian of the year during her high school years. Doing what? Running the 400 meter. As to talking, don't get her on the phone. Reading and writing - yes she reads over your shoulder if she thinks she might be interested in your personal business. Her seizures have been the biggest handicap in her disability line up. She has smiled her way through her 42 year journey, has been at deaths door at least 4 times in her life, but got through it all pushing to come out in the sunshine of life. She is tough as nails. Falls - never said she was graceful, bring her back on her feet, and on to what is next. Seizures, uncontrolled, bring her to what she was taught through it all - everyone has something, and we do what we can to make it better, and there is no choice but to keep moving. She is aging, and dealing with more and more equipment to keep her on her feet. As to the seizures - she can cope with the fact that they continue to happen, but the injuries are getting harder to accept. To some her up, one of her uncles says that what he loves best about Robin is "6 times down, seven times up." Her self motivated resilience just keeps her going. Obviously, she is loved, and she knows it.
As to why you might want to know her story, we've learned some things that might help you as you work with your own developmentally disabled family member. We don't have all the answers, and just maybe you will share your journey, and we'll learn new things together. I've always said that Robin has brought more smiles than tears. She has been one of my life's biggest joys, and yet, my largest concern.
Why was Robin's blog, edited by her loving mom, and legal guardian developed? I've started the story a million times, and backed off. We have a lot to discuss, share stories, and learn from each other. I had to get it started today. There is an immediate crisis that threatens her home - the place she has called home for over 20 years, and her very safety and health. What is more important is that we need your help and support. No, it isn't a call for donations. It is a call for action, and help getting the story out, that is dismantling all that Robin has over come. Our next posting will set the stage for what we can do to help Robin, and maybe a lot of families facing the challenges of loving, and planning for our very loved developmentally disabled children.
EDITOR'S NOTE: I do all things on the run, including my blogging. My hope is to share information. I love that. I run with my thoughts, and don't worry about my punctuation, and if spell check misses something, that's just the way it is. So don't get out your red pens. .