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INTERVIEW WITH EMILY PERL KINGSLEY AUTHOR OF WELCOME TO HOLLAND

Emily Perl Kingsley talks to CreativeParents.com

Emily Perl Kingsley wrote "Welcome to Holland" in 1987. Since that time, "Holland" has been translated into numerous languages, reprinted regularly in Dear Abby, and published on scores of websites. Emily has been a writer for Sesame Street since its earliest years.

When her son Jason was born with Down syndrome in 1974, Emily and her husband Charles became activists, educating the public and developing resources to help Jason and other kids with special needs fulfill their potential. Jason and co-author Mitchell Levitz wrote "Count Us In: Growing Up With Down Syndrome,"a book about their own lives and experiences.

Why do you think "Welcome to Holland" has had such resonance, for so many people?

EPK -It's about a lost dream, any lost dream. Any change from the original plan. It says that it's okay to continue to feel the pain of the loss; that it's legitimate pain. It says that you're entitled to be disappointed -- which then allows you to go on and enjoy what you did get.

How did you come to write "Welcome to Holland?"

EPK- I was doing a lot of counseling of families with new babies born with Down syndrome. When our son Jason was born the obstetrician told us he would never walk or talk -- that we should institutionalize him and tell family and friends he'd died in childbirth. After we got the doctor's gloomy prognosis, we nevertheless decided to give it a try.

Jason turned out to be so different from what the doctor predicted that we determined to try to prevent other parents from believing doctors who were not up to date in the new treatment protocols for these babies. We wanted to urge other parents to give their babies an investment of some of their time and energy and see how it turned out - see for themselves, not go blindly according to a doctor's obsolete information.

It was the fact that raising Jason turned out to be a special kind of reward and joy (not, perhaps what I had expected - but rewarding just the same) that I was inspired to come up with "Welcome To Holland. " I felt that if we could save just one family from being discouraged, from getting the kind of bleak prognosis we had, we would be doing a lot. Sitting by the bedside of a new mom I found that the words about Holland just came out of my mouth. Later I wrote them down. "Welcome to Holland" was part of the final scene of my movie, "Kids Like These." I'm not quite sure how it emerged into the larger world.

Have you had any more contact with that obstetrician?

EPK- No. But on page 27 of Jason's book "Count Us In" he conceptualizes a face to face meeting between him and that original doctor. Jason just wants to tell the doctor about the new advances and the new things kids with Down syndrome can accomplish -- so the doctor won't discriminate against people with disabilities again. And then, Jason says he will be a better doctor.

Were you surprised by the response to "Welcome to Holland?"

EPK- I was absolutely surprised. All sorts of things have developed out of the piece in the intervening years. Two people have set it to music. There were several conferences organized around "Holland." In one of these the decor started off in Italy (checkered table clothes, chianti bottles, etc.) When people came out of their workshops the decor had been changed to blue and white delft pattern with pots of tulips all over.

I get reprint requests every day. When one family got the prenatal diagnosis of Down syndrome, they said that Welcome to Holland had helped them adjust to the situation so well that they decided to name their child Holland Abigail if they had a girl and Holland Alexander if they had a boy. The father made tulip-design stained glass windows for the baby's room. They had a girl and I have the photo of Holland Abigail right here.

How did you learn what to do -- how to support Jason's progress?

EPK - Almost immediately we plugged onto resources. We were pioneers. At that time infant stimulation programs were cutting edge; they were experimental and controversial. The people and programs gave us a tremendous amount of hope. Jason showed us near the start that he was bright. But there were very few people to look ahead to. Mitchell Levitz, who is a few years older than Jason, was the first kid in Westchester County to have infant stimulation. Jason's own progress helped keep us going. Everything then was a challenge.

How have things changed over the years?

EPK -There have been enormous changes in the last 20 years. We now take it for granted that kids with Down syndrome will read. Jason started to read at age four. The prevalent attitude back then was that kids would be able to learn to zip a jacket and wipe a table.

Now there is often full-inclusion of some children with Down syndrome into classrooms with their non-disabled peers. Before, they were lucky to be in the same building. Many kids with Down syndrome are in regular classes. It doesn't work for everyone. You need to go on a child by child basis. Some do better in an inclusion setting -- some don't. Inclusion works best with an excellent support system. Where a school is willing to work to make it successful, it almost always is.

Is it very different now that Jason is an adult?

EPK- As before, everything is new. We don't have role models. Jason has become bright enough to conceptualize his own disability. He's aware of his own limitations and realizes that the future for him is not the same as for others. He's been able to live independently, amazingly, but it can be lonely. There aren't a lot of jobs for kids like these, and he still runs into prejudice.

If you could make a wishlist, what would it include?

EPK -I'd like to see more opening up of the workplace and more recreation programs. These young people don't drive, so their lives can be isolating. We need more transportation services so they can partake in the programs that do exist. They need more social opportunities, both integrated with other young people and within their own group. When Jason was a teenager, we parents of kids with special needs organized parties for them since they were not invited to the mainstream parties.

What would you like people to know about "kids like these?"

EPK -I'd like people to know that these are people with the same feelings, hopes and dreams as anybody else. They are individuals - with individual ideas, opinions, tastes and capabilities. They want to be respected. They want to live and work in their communities and live regular lives.

Read Welcome to Holland

 

Count Us In by Jason Kingsley and Mitchell Levitz is published by Harcourt Brace &Co. It is available at most major bookstores or through the publisher.

For information and resources on Down syndrome go to http://www.ds-health.com/ds_sites.htm#natl

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