A few months ago, I asked if you had any questions for Emily Perl Kingsley, the author of Welcome To Holland. That's the essay she wrote in 1987—the one that so many parents of kids with special needs have read, the one that's given so much inspiration. Emily's son has Down syndrome; she has served on various boards and committees over the years to raise awareness about people with disabilities and encourage inclusion.
Emily is a longtime writer for Sesame Street and has also written children's books, videos and songs that appear on Sesame Street albums. The woman has receive 17 Emmy Awards and 14 Emmy nominations for her work on the program, along with the Secretary's Highest Recognition Award from the U.S. Department of Health and Human Services.
To sum it up: she rocks. And she was kind enough to answer lots of questions:
When and why did you write Welcome To Holland? Was it for yourself or a publication?
I was counseling a new mom who had just had a baby with Down syndrome and it just came out of me as we chatted. I was counseling lots of new moms in those days. When I got home it occurred to me that the metaphor seemed to help her and rather "made sense" so I jotted it down. In the days following I found myself referring to it several times. Before I knew it, I had sent it to a few people and before long it "took wing" and got a life of its own. Ultimately I used it as the final scene in my CBS TV Movie Kids Like These and since then it has been all over the world. It's been translated into dozens of languages and has been reprinted in scores of books, magazines, etc. It has been used as the theme of many conventions, has been set to music in many different formats, has been printed on t-shirts, aprons, greeting cards, calendars, posters, dolls, stained glass, you name it. It's quite overwhelming!
Did you ever imagine it would be this popular?
No, I never imagined it would take off in the way it has! It is quite amazing and humbling. I am incredibly gratified that it seems to have helped so many people.
Do you feel the same way now about the trip to Holland as you did when you originally wrote it? Has anything changed?
It still seems to work. I am reminded of its applicability frequently as different phases of life come and go. I'm gratified, also, when I'm told that it is helpful to other people who deal with other challenges than Down syndrome. It seems to be useful to people meeting many different kinds of situations, in fact almost any type of "change of plans." That was a surprise indeed—and a very pleasant one.
I know you must have gotten such a great response to the piece, over the years. Can you share a couple of particularly memorable responses that were meaningful to you?
I have received so much response to WTH it's hard to enumerate. I think the most incredible outcome is that I know of four actual children in the United States who have been named "Holland" as a result of parents’ response to this little essay and the help or inspiration they felt as a response to it. There is a Daniel Holland, a Paige Holland, an Abigail Holland and a Holland James that I know of. That just blows my mind!!! There is also a theme park in Georgia which plans to have a Welcome To Holland section which celebrates children with special needs. Amazing!!
How old is your son now, where is he living, what does he do?
Jason is now 36. He lives in a small group home in Hartsdale, New York with two roommates who also have Down syndrome. They have part-time staff who help them with activities of daily living (food preparation, shopping, cleaning, etc.). He works in the mail room of our local ARC, participates in Special Olympics and takes classes in music and filmmaking. He loves classical music and Broadway shows, baseball and anything Disney.
Has your son read this essay, or have you read it to him? If so, what has he thought of it?
Jason is familiar with WTH and is proud to be the inspiration for it. He has done a huge amount of public speaking, has been on television shows (Good Morning America, Donahue, many other interview shows) and is a wonderful spokesperson for self-advocacy.
Does life with a child who has special needs ever get easier? As one mom said, "Being three years into this, every day still feels hard and I'm still sad. Does having a child with special needs every feel normal (not to society, but as the mom of the child)?"
It is important to recognize that there are certain painful parts that never go away. That is a part that I emphasize in WTH—that the loss of the dream ("the trip to Italy") is a loss which you will never forget. That never goes away. That is why, when people ask to reprint Welcome To Holland, I make them promise to reprint the whole thing without cutting any parts out. They must reprint it in its entirety, including the part about the pain. But... and this is important too... there are also certain gratifications that are unique to parenting a child with special needs. It is a very mixed experience—different from parenting a "typical" child. Some aspects are easier, some harder. It cannot be boiled down into a simple equation.
What advice do you have on helping transition children with disabilities into adulthood?
The most important thing is to see each child as an individual with individual abilities, tastes, interests, deficits, needs. Children should not be cubby-holed into a one-size-fits-all direction or track because of the label they carry or the diagnosis they bear. They should be part of the planning process and their personal and human rights should be taken into consideration. All people are entitled to live with a certain amount of free choice and fulfillment and personal space and happiness. They should have choices about where to live and work and recreation. This is, sadly, often wishful thinking—but more resources should be put into giving adults with disabilities more opportunities for real life fulfillment.
Some in the special needs community embrace your essay, some do not. What are your feelings about that?
When I wrote WTH, I basically had Down syndrome in mind. The fact that it has been "adopted," if you will, by people with other challenging conditions is very gratifying to me and I'm so very happy about that. That some people feel it doesn't apply to them cannot be my problem or my responsibility. I didn't write it intending it to fit everybody. Some Autism people are upset with me because they feel I didn't make it awful enough. Well... I didn't write it with Autism in mind... and if it doesn't fit, then don't use it. Write something else. I'm grateful that it works as well as it does for as many people as it does.
About your work on Sesame Street, when you were pivotal in introducing kids with special needs onto the program: Were people on the program scared? Unwilling? Were you met with resistance?
The people at Sesame Street have been wonderfully supportive of my efforts to include individuals with disabilities at every step of the way. Nobody was ever scared or unwilling. Occasionally a film would be made by an outside filmmaker who was not as aware of our mandate to be inclusive and the film would be delivered to us without having included any kids with disabilities and I would be disappointed in that particular film. We would contact that filmmaker and instruct them to be more inclusive in future projects. Anything taped in our Sesame studios was always done with our own casting people and they have been fabulous through the years in utilizing kids with a wonderfully wide range of conditions on the show. In addition we have cast celebrity adults like Christopher Reeve, Itzhak Perlman, Ray Charles, Andrea Bocelli and many others through the years. I think that Sesame Street has a better record of inclusion than any other television show in history!
What are three of the most important things you want other parents to know about raising a child with special needs? What has made it easier for you?
(1) Take it one day at a time. If you have a terrible day today, tomorrow may be better. (2) Find support in friends, family and other parents who have been there and know the ropes. Find a parent support group. Go to meetings. If there isn't a parent support group, start one. Nothing helps like commiserating with other parents and sharing experiences, helpful hints, playgroups, support. (3) Don't let anybody talk you out of knowing what's best for your child. You know your child better than anybody. Become a fighter. Become your child's best advocate. Your child's success may ultimately depend on your fighting for his/her access to a good school program, doctor, recreation program, group home, whatever.
What's made it easier for me is the sweetness in the child himself who sends me a Valentine card that reads: "Roses are red, Violets are blue, Sugar is sweet and So do you!"
Gotta ask, have you actually been to Holland?
Actually I have been to Holland and it's lovely. I've been to Italy too and loved that too. I don't have any other birth children so I haven't had that metaphoric experience. Many people... in the Welcome To Holland sense... get to go to Italy and Holland. Lucky them!
My words: Savor whatever experience you are fortunate enough to have. Make the most of the hand you are dealt. Try to find beauty in each day if you can.