In two earlier blogs (September 13th, 2008 and March 6th 2009), I mentioned this gem of a book by Greg Palmer. At that time I wrote:
“A second good look at life of a young adult (older teen) is Adventures in the Mainstream by Grg Palmer.(Woodbine House -2005 – ISBN 1-890627-305) First, this book is interesting just by itself. In addition, in its pages you see how even a high functioning teen like the author’s son, Ned , have their own quirks that the parent really is not able to control. And how this child can be helped to succeed and prosper.”
“On the topic of Snow White: Greg Palmer, in his book Adventures in the Mainstream makes a very interesting evaluation of Snow White and the seven dwarves. (I know that sounds weird, but see below, and you’ll se that it is not so strange.) His book is published by Woodbine House, but is already out of print, unfortunately.* This book is very worth getting on an inter-library loan, even if you don’t have a child with special needs. It is a very fascinating look at two years in the life of his son, who has Down syndrome. I promise you, it’s interesting.On Mr. Palmer’s web site ( http://www.gregpalmer.com/ ) I found that he has noted this about the alternate version (of Snow White) that he has authored:‘SNOW WHITE was written in response to extreme dissatisfaction with the Disney version, which reinforces the idea with young people that what you look like is very important - it is, after all, why the Dwarfs save Snow White, why they don’t bury her, why she eventually defeats the Queen; because she is indeed the fairest in the land. And then, after the Dwarfs have taken such care of her, she rides off with the first handsome prince who comes along, even though she has never exchanged a single spoken word with him. There is also the Dopey problem; the Disney character being an obvious developmentally disabled adult who is continually abused physically and verbally by his "loving" brothers. My Snow White makes an intelligent decision about who she loves, and why (it’s the Grumpy equivalent) and the youngest Dwarf is named Peg. She is a developmentally disabled adult as well, but is treated by her siblings with love and respect.’ “
Over the last few days I have been rereading this (Adventures in the Mainstream”) book. Four years ago, when I first read it, Ricki was all of ten-eleven years old, and was still in her previous school. (Which had a very imperfect inclusion, and a lot of people who thought I was crazy.) The view of this teen who can carry a tune, play guitar, and recite poetry seemed like a dream to me.
In some ways it still is. Ned Palmer has been given many opportunities Ricki has never had, and his parents can rightly be proud of his progress.
And yet, as I read this book, I am suddenly noticing a lot of things I am doing right. A lot of points that Greg Palmer makes about things his son needed, or needs, are things that I am doing already. Maybe I subconsciously remembered the ideas from 2005, but I don’t think so. I think that it has a lot more to do with picking up the attitude that your child is an individual, that he needs independence, that he deserves respect. If you believe these things, you are apt to make different choices than you would otherwise.
I also noticed that I am more able to deal with the reality of the “quirks” that show up in Ned’s life, than I was 4 years ago. However, when I see these types of things in Ricki, like talking to imaginary friends, I still try to limit them... although INTERNALLY I am less bothered than I once was. The point that is striking me the most this reading is the need to make a “community” of (non-disabled) friends. Ricki, as Ned was years ago, is leaving inclusion. Her possible exclusion from all “normal” friendships bother me as much as it did Ned’s father a few years ago. Ricki, however, has the advantage of a big family with many siblings. But the re-reading of this book is a wake-up call to me that her family connections may not be enough.
As I finished this post, I decided to go to the Palmer website and see if there was anything interesting there. It turns out that Greg Palmer died about a month ago. All I can say is that I am gratefull for the material he wrote, and saddened for the advocacy lost.
* PS On the website, this is written:
Though Adventures in the Mainstream (Woodbine House 2005) is currently out-of print, a limited number of copies are available for purchase at the reduced price of $10 from: Island Books: 3014 78th Ave SE, Mercer Island, WA 98040; (206) 232-6920
* Adventures in the Mainstream, under the title Ned & Me, has just been published in Hebrew by Yessod Press of Jerusalem. For more information, contact Yesod at www.yesod.co.il
I urge those of you with children with Down syndrome to grap it up while you can.