Monday, March 21, 2011

An interview with the author of Welcome To Holland

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.


  1. Amazing woman! So glad you got to speak to her. When I first got the Dx for Racer someone referred me to that poem, some days it has made all the difference.

  2. This is incredible, and I hope she sees the comments that I'm sure will follow mine... someone gave WTH to me when my son was born 3 months early and I was mourning my lost trimester... it's applicable to just about anyone who experiences life different than what you expected.
    I'm thrilled to have gotten to "meet" her, and to say this: Thank you. Your words got me through more than a few very dark days when my Max was first born. Thank you.

  3. As always, thanks Ellen and a big thank you to Ms. Kingsley! You have heard many thanks, I'm sure (as has Ellen), so here's another one. WTH helped me so much in the first year of my daughters birth. I had no words -- it helped give me beautiful words that had intense meaning and clarity. Five years later I still get chills when I read it.

  4. A friend of mine named her little girl (who has Down Syndrome) Holland, because of this precious lady's book. :0)

  5. Love Welcome to Holland! Thanks for the lovely interview! Needed to be reminded of that last part! :)

  6. I'm not one of those people who found WTH particularly comforting, but I know so many who do so so I read this interview with interest until I got to the sentence about autism and awful. I really don't think this was a sensitive or good way to phrase things. As an "autism parent" with a kid on the lower-functioning end of the spectrum, many days are frequently very challenging but I would not characterize them as "awful" and my not loving the poem has far more to do with my own personality/gallows humor than her writing. I do love that Sesame Street is one of the few programs that features children with disabilities in a positive way, and if that's due to Emily, then thank you to her.

  7. Thanks for this Ellen -- I've posted at BLOOM to encourage readers to come by.

  8. Do you by anychance know the theme park in Georgia she is talking about? I live in Georgia and would LOVE to go...thanks!

    1. I saw signs for it as I drove through Atlanta recently.

  9. I respect Ms. Kingsley for having written something that reflected her experience of disability. I am another who finds the poem completely inappropriate to describe what life is like with a child who has severe multiple physical and cognitive disabilities. The problem isn't the poem, it's the fact that it gets shoved in front of every parent of a kid with challenges, repeatedly, for years, and we're supposed to be ever so appreciative and comforted by it. Sorry...not in my world.

  10. Just awesome! After these past six years, it is wonderful to read Kingsley's words and to see the more personal side of her prolific essay! Thank you for doing this!!!

  11. Thanks Ellen I recently came across WTH it was very enriching for me it was a unusual way to sum up how it feels to have a child with special needs. Although sometimes it does feel a lot more painful then the poem describes it, it is nice to have the poem to remind of us of how the special needs journey feels sometimes. Ok enough of that, I would really like to know what special needs amusement park she is speaking about I would love to take my five beautiful children. I tried to look it up and found a park by the name of Lake Winnie in the Georgia area would this happen to be the park ? I would love to go I already wanted to take my children to the Atlanta Aquarium this would add icing on the cake for my little ones.....

  12. While I am also one of the people who aren't in the total appreciation camp, I will say this...her no bullshit answer on the question of whether everybody embraces it was freaking COOL with me.

    In a way she is saying hey...don't be mad at me for CREATING the thing, here's why I wrote it and I stand by doing it for my circumstances. I can't help that you may have received it or perceived it in whatever way you did. That's out of my control. If it doesn't apply to you then don't use it and 'then write something else' that does.

    I respected the answer, a LOT.


  13. Great interview!

    I'm with Claire. I appreciate where the author is coming from, but have been emailed this piece so many times I've lost count. Having a child with Autism is no Holland.

  14. I can't remember when or where I first read Emily's essay, but it was when Max was very young, and I found it comforting and relatable. Since then, I've also been emailed it a lot. I've never minded that; I don't feel anyone is trying to tell how to be comforted. It's just something to share, in the same way that we share posts from other blogs that are helpful.

  15. Ellen, I really needed to hear the part about fighting and advocating and never letting other people tell you what is best for your kid. Thank Ms.Kingsly so much for me!

  16. Not a fan of the poem but her son's book Count Us In was one of the first books I read as a new Mom. I would say that since my son has DS and Autism and he was adopted that is why the poem never really fit me. I went to Russia instead. Great interview. Had no idea that the author of that poem was Jason Kingsley's Mom.

  17. Very interesting interview. I remember receiving that poem from a friend after she found out my daughter has cp. It did give me comfort. Also, I've always been appreciative of the fact that Sesame Street has children with special needs and it's nice to know who was responsible for that.

  18. Someone told me about "Holland" when my daughter was in the NICU at birth. I did enjoy it then because I appreciated the positive spin on an unexpected turn of events in life. My daughter is now 8 and is doing really well in many ways (she has Down syndrome), but we struggle almost daily with behavioral challenges that test the limits of my appreciation for a rosy outlook on a change in my life's journey. I totally get why people might be put off by the piece because it doesn't (cannot) speak for families caring for children with far more complicated and challenging concerns than her son has had; but it is still a good poem for many families just beginning to cope with their child's diagnosis, and I feel it does more good and harm.

  19. Wonderful read! Can you find the author of Holland, Schmolland and get her view too? :)
    Thanks, Lovethatmax, this was great.

  20. I am definitely more in the "Holland Schmolland" camp, but nonetheless I appreciate her being upfront about the fact that her poem is not *supposed* to apply to everyone. As another commenter wrote, I think what upsets some of us more is that so many people say "Oh, you MUST read Welcome to Holland!" without realizing that the essay simply does not apply to many situations where a child has major medical, psychiatric, or behavioral issues, for example. It's not the author's fault. It's just the sad truth that many SN parents could only dream of a place like Holland.

  21. Awesome interview, Ellen. Thanks for taking the time to share this amazing story with us!

  22. What a great interview! I didn't know the history of the poem, and have a new appreciation for it. I have mixed feelings about how it has related to my experience, sometimes preferring the "Welcome to Beirut" spin on things. But I appreciate the idea that this is our family's life, and that I can spend my life looking at where everyone else is going or choose to try to be happy here and now.

  23. Ellen - Would it be OK to put a link on my blog to this posting? his is so wonderful.

  24. Feel free to link, Vanessa—glad you like this.

    Joanna, I've had a couple of friends with so-called typical kids send this essay to me. I think they sometimes can't find the words to say and sending this to me has made them feel like they are able to do do something. This essay has comforted THEM.

  25. Thank you, Ellen. This was lovely!! If she only knew what a difference that poem made to me...and still does. :)

  26. I cannot tell you in words how much WTH meant to me. I remembering reading it very soon after my daughter with DS was born. It was a complicated delivery ending in an emergency C-section. My daughter was whisked away to the NICU and I had not really even gotten to touch her because the epidural had spread upward a little too far and my arms were paralyzed. I was physically and mentally hurting. Everything seemed unreal, black, and distant. This was the worst time in my entire life. That poem was my lifeline. It told me in just a few words that it was ok to mourn but that in the end life would still be life and worth living even if different from the way I would have planned it. I cannot thank you enough.

  27. I recently shared Welcome to Holland with parents who were in a NICU as their baby had several surgeries already had never been out of hospital. They really were in a foreign place they never expected and there are lots of words/phrases/terms to learn.
    I have always found it such a well written analogy of how quickly things change and how we end up somewhere unexpected. I have raised my own 2 boys with disabilities and would not have done things any differently.
    Recently I found a letter talking about being in Holland for a while now as a response (Parent to Parent Handbook) to Emily's letter and it was wonderful as well. Thank you for sharing your letter with others it has been very helpful.

  28. When I was in college, studying to become an elementary school teacher, I remember reviewing WTH in my (one) special education class. I never intended to (nor did I) teach special ed, but the poem just *stuck* with me. It was very touching to me, and I felt a certain ache that I didn't quite understand. It was one of the few pieces of paper from college that I filed away instead of just tossing. I never thought of it again.
    Fast-forward 11 years. It was an hour after giving birth to my second son, and my doctor broke the news to me that he has Down syndrome. My world (so I thought) was shattered. WTH was in the packet that I receieved from the hospital. As I laid in my hospital bed, physically hurting from my C-section, and emotionally hurting from the death of life I had my heart set on, the ache that I had once felt from reading the poem returned tenfold. But WTH, to me, is so true and so comforting. My second son (I have three now) Benjamin turns three in three weeks, and he is my heart. My life has been so enriched because of him. Does it still hurt? Yes. Do I still wish he didn't have Down syndrome? Yes. But I try to live my life by the last words of this great post:

    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.

  29. Upfront, I want to say that I am not the mom of a Holland-SN child. But I would like to give the point of view of someone from "Italy" on the WTH story. Before I had children, I got a job at an ARC. I guess I grew up in the non-inclusion era, because I had never really been exposed to anyone with SN. Getting my Masters degree in Psychology was the extent of my knowledge of people with SN. I was given WTH to read when I got the job at ARC. It helped me so much. I'll be brutally honest here, because I suspect you have all encountered people with the same attitude I used to have. When I saw those with SN, I secretly felt pity. I felt glad it wasn't me or my family. I felt sorry for them and what their parents must go through. Reading WTH changed that for me. Suddenly I got it. Those who were different were not "broken". Their families were not to be pitied. They might face different challenges and many difficulties, but that was mixed with different joys and adventures, which I came to understand much more as I directed our programs for persons with developmental disabilities and one for supported living for adults with mental retardation. I loved my clients and their families, and became much like a mother or beloved aunt to many of them. I know many people can relate to Beruit or Schmollad better than Holland. That is the nature of analogies. They work for some people or situations, not for others. But I think the WTH poem works especially well for "Italians" who may not have any experience with Holland. It gives us a new perspective, and I was very grateful for it. I hope I haven't offended anyone with this post. I thought it might help some people understand the view of non-Dutch. Our attitudes usually come from non-exposure and ignorance, not malice or any intention to offend. It's easy to do something inappropriate when visiting a new country. Blessings to you all.

  30. I think that the big difference between the author's experience and those who don't appreciate it is the severity of the child's cognitive and social skills. My daughter has cerebral palsy and PDD-NOS, but is very loving and playful while still having some characteristics of autism. I have always thought how grateful I am that while she has many, many challenges, she expresses her love verbally and with affection every day and that gives me a lot of strength that not all parents of kids are lucky enough to experience because of the severity of their child's disability. And remember, there are stages of grief and we are definitely different people at the different pages. Reading this article when my daughter was two was not nearly as comforting as when she was five I had dealt with my denial and anger. Also, for me, part of the loveliness of Holland is how my daughter's needs have made me and my entire family more compassionate, considerate and loving people. A painful way to learn these lessons, but it is true that I appreciate people and savor my blessings much more than I ever did before my daughter was born. I have also met amazing people and met people who I know will be life-long friends and I never would have known them without my daughter. Does that mean I am glad my daughter was born with a disability......of course not! Would I give up all these life-changing experiences to let her have typical health and development, of course. However, I have to find meaning in this journey as it can be overwhelming a lot of the time.

  31. Imagine you are at the airport on your way to Italy but get on the plane to Holland. You stow your baggage, sit down and talk to another passenger about your trip to Italy. They reply that this plane is going to Holland. What do you do? Do you say that it is too late because you have already boarded the plane or do you get off and go board the plane to Italy.

    How long after boarding the wrong plane are you committed to arriving at the unintended destination?

    With pre-natal testing for Down Syndrome and abortion have you just boarded the plane or have you arrived at the unintended destination? If you test and abort then you can try again for a healthy baby.

  32. Sesame Street may have a track record of encouraging diversity and inclusion, but they are still one of only few shows that refuses to provide captioning on their webcasts. They similarly do not respond to emails inquiring about captioning. The Linda the Librarian days are over. Perhaps if you are still in touch with EPK, you could ask her why deaf kids are a demographic Sesame Street does not care about including anymore.

  33. Thank you for posting this wonderful interview. I referred to it (and to your "words of wisdom") in a post I published today on my blog, Koogle's Korner. :)


Thanks for sharing!

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