An Acronym That Works: SPHERE , founded in 1987 by a group of parents in the town of Ridgefield, Connecticut, stands for: Special People Housing Education Recreation Employment. And Wow, they are special! Last night I attended the yearly performance of SPHERE’s theater group. This year, for the first time, the group made a movie, an adaptation of Romeo and Juliet, based on the bard’s original play but adapted by Sphere’s president Valerie Jensen and fellow board member Emily Pambianchi. It was hysterical! The movie is available on DVD.
Awesome Is The Word: 1987 was the dark ages of special needs in this country and probably throughout the world. Even now, many would tell you that is still the case but there has been much enlightenment since then. When these families bonded together to fight for their children, you can be sure they were on their own. The children of those original founders are middle-aged now and quite a number have significant challenges in the areas of language and mobility. The range in age amongst SPHERE members is probably over thirty years and is matched, to some degree, by the range in disabilities. Yet, no matter the language or cognitive differences, this is a strongly connected and deeply loving crowd. AWESOME.
Love That Laughter: This humorous take on the English language’s greatest romantic tragedy is based on a coloring book written by Ms. Jensen that is available on Amazon.com. Humor is the word that I use to describe living and working with special needs. What I mean is that taping into the playfulness of people with challenges, and most importantly, joining in their willingness to see the humor in themselves and others, is one of the true silver linings of living in that world. Valerie, Emily and the other SPHERE leaders who lead this band of actors capture this joyously in their movie.
Humor Glued Us Together: There are many bonds between parent and child. But for our family, shared humor was and is the glue that got us through the “challenges.” What I saw last night from the second row at the Ridgefield Playhouse, packed to the balcony, spoke volumes on that subject.
Postscript: Our daughter called just as I completed this post, quoting a line from the new Johnny Depp movie that she saw last night. “I laughed my head off.” She has a Johnny Depp poster on her dorm door and a new Johnny Depp tee shirt, one of several, in her dorm room drawer. She totally gets him, gets his humor. Has for years. Humor is the glue. She cracks me up, that girl.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Susan keyes says
Im a mother of a 21 yr old w/ special needs. My son is wonderful. We live in Lake County Florida. I feel like Alice falling down the rabbit hole trying to find services or a job program for my son. Please can anyone help with advice or tips.
Susan, your image of Alice down the rabbit hole captures that state of bewilderment, what direction to go in. Does your son have a case worker? What entitlements does he qualify for? Is there a service agency in your area of special needs, or disabled. An ARC or some other group. What does your school district suggest? If you can give me some more information, perhaps I can make some suggestions.