Shortly after we received Cedar’s Down Syndrome diagnosis, a young lady doing hospital rounds with the physician group shared this poem with me. It was a profound moment, because I felt like the words gave place to all that I was feeling.
Welcome To Holland
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
How old were you when gave birth to your son?
I was 34 years old.
Did you know he had Down’s Syndrome before he was born? Can you share a bit about the diagnosis phase for you?
I did not know. I was offered an amniocentesis – but I was not in the high-risk age range (over 35). Also, at that time there was a one-in-ten change of injuring the baby in the uterus so I elected not to have the test.
What year was it and what kind of information was provided to you about what life would be like having a child with Down’s Syndrome?
It was 1973-1974. Information was rather primitive. All books described children with DS as being severely-profoundly mentally retarded with life expectancy of about five years.
How were things different then for you versus moms starting this journey now? There was a tremendous stigma. No integration or mainstreaming. Most children were routinely institutionalized at birth.
How did you and your husband process, did one come to acceptance before the other and how has it affected your relationship?
The obstetrician gave us very negative information about our son’s prognosis and assumed that we would institutionalize him immediately. He gave me medication to dry up my milk so that I would not get engorged because he assumed I would not be nursing my child. He kept the baby in a separate nursery and did not encourage me to see him or hold him.
On the third day a social worker came in and informed us that there were some new theories called Early Intervention. Some people believed that if you worked with these children, gave them a very enriched and stimulating environment with lots of education, they could perhaps learn some very fundamental simple skills. They suggested that we might want to take the child home and try.
This appealed to us and we tried, with great apprehension, to take our child home and try these early techniques. We were very nervous and it took us a while to fully commit to belief in our child and his potential to learn.
Did you know anyone with Down Syndrome prior to having your son?
No. It took us four months to meet any other families with children who had DS. We finally located a parent group and started to meet other families. This was extremely helpful.
Can you share a bit about your son now, his abilities, challenges and what life is like now (including his current age)
It was very soon that Jason demonstrated that he was extremely bright and responsive. He started to learn at a very early age. He was learning letters and numbers at age 3, putting simple words together at 4, doing simple math at 4 and 5.
At 7 he could count to ten in twelve foreign languages. At ten years of age he acted in a one-hour TV show, memorizing a 63-page script. He wrote a book with another young man with DS when he was 19 [COUNT US IN : GROWING UP WITH DOWN SYNDROME] which was published by Harcourt Brace and is still in print.
He is now 42, lives semi-independently in a small group home with two roommates, with part-time staff. He works in a mail-room for a good-size nonprofit agency, rides public transportation, and has quite a full life.
What was the impetus for writing “WELCOME TO HOLLAND?”
I was sitting on the bedside of a mom who had just had a new baby with Down Syndrome. I found myself telling her what it was like and out came this spontaneous analogy…. “Welcome to Holland.” When I got home later I thought about it and realized that she had responded to our conversation and it had a positive impact on the new mom and it worked for her, made her feel a little better. I said to myself, “that’s not bad. I ought to write that down.”
I did and mentioned it again to another new family a couple of weeks later. Shortly after that I was writing my CBS Movie-of-the-Week KIDS LIKE THESE and decided to use it as the concluding scene of the movie. After that it sort-of “went viral,” as they say, and the rest is history. It just “took off.”
Where was it first published?
I don’t have any idea where it was first published but it just took off on its own and started showing up in newspaper articles, DS parent newsletters, hospital parent packets, greeting cards, etc. People started asking me if it was OK to share it, reprint it, etc. I always said yes.
Problem was that people often reprinted it without asking permission and they frequently changed it, added stuff to it, left stuff out – didn’t realize that it was a copyrighted piece. So I started asking people to ask my permission before they reprinted it because it was copyrighted and I wanted people to reprint it accurately, using a correct version and not changing any of the content. It was important to me for people to reprint it correctly and not leave anything out or change the meaning of it.
Do you have any idea of the impact it has had on the entire DS community?
I can only imagine from some of the things I have heard or seen. I know that it has been reprinted many, many books, articles, newspapers, parent packets, hospital brochures and leaflets. It has been reprinted in Dear Abby every year for many years. It has been the theme of many disability conferences, printed on t-shirts, hats, aprons and wall hangings. It has been set to music in many different styles – a ballet, a concert band piece, a folk song, and many other venus.
It is very humbling to me to think of the many ways in which it has been interpreted and utilized to be helpful and inspirational to people.
Have you had lots of parents reach out to you over the years, what was the best/worst experience you have had with that?
There have been some negative reactions from some people in the disability community who felt that it was sentimental or too optimistic, not negative enough in representing the challenges of raising a child with a disability.
My feeling was that I included the paragraph about the pain of the experience covered that aspect and it was necessary to include that as part of the experience. Sometimes people left that out and if they did, that would certainly not honestly describe the totality of the journey.
In addition, when I wrote Welcome To Holland, I was describing the experience of raising a child with Down syndrome. There are certainly experiences that people have raising children with conditions that are more serious or more challenging than DS and perhaps Welcome To Holland does not work as well or as specifically for them.
I’m sorry if it doesn’t work as perfectly for them but my intent was not to write something that necessarily works for everybody. There are some websites on the Internet that take issue with Welcome To Holland and they are free to express their opinions. I am glad that Welcome To Holland is as helpful for as many people as it is.
Tell us a little about your work trying to promote inclusion (If I remember reading correctly, you have worked for Sesame Street for years and worked to have them include children of all abilities?)
I retired from Sesame Street in 2015 after working for them for 45 years (!). I started including individuals with disabilities in the very beginning (Season Two) when I started writing material for the Little Theater of the Deaf, writing for actors who were hearing impaired. That was delightful and we got a lot of positive feedback. Soon, we started including a lot of sign language on the show and even started having a sign language word of the day. We soon hired Linda Bove, a deaf actress, to become a regular member of the cast. We started including deaf curriculum – teaching kids about what it is like to be deaf and make accommodations to the environment – like modifying your alarm clock, your doorbell, etc. when you are deaf. we wanted to show how Linda could be a regular fully-functioning beloved member of the Sesame Street community, a good friend.
In the process, I got to be good friends with Linda and the other deaf actors in the LTD troupe and became familiar with some of the political issues that are common to people who are deaf or are disabled. This was my first introduction to disability issues.
Several years later, my son, Jason, was born – with Down syndrome – and those issues came into sharp focus for me when I became acutely, and painfully aware of the absence of individuals with disabilities in the media – including on my own show, Sesame Street.
A few years later, when it was becoming apparent that Jason was very bright, that he was learning letters and numbers and was putting together simple words (at age 3) I felt it was important to show the world that a child with Down Syndrome was able to do these things (in sharp contrast to the information that had been given to me by my early obstetrician). I had an opportunity to put Jason on Sesame Street and demonstrate what a child with DS was capable of doing!!
The producers were very responsive to the idea and we began showing Jason at age three – doing letter identification, reading simple words, and other academic tasks. The feedback we got from the viewing audience was phenomenal! Mail poured in from grateful viewers! We were encouraged to do more and more. And also to include children with other kinds of disabling conditions. Parents were so grateful to see children with disabilities represented on television!!
So we started including children (and adults) with all sorts of disabilities…. and we continued doing so throughout my 45 year career. We also talked about different disabilities – we answered kids’ questions – up front and honestly. We talked about crutches and wheelchairs. We talked about service dogs. It was very exciting.
What is life like now as the mom of an adult son with DS?
Jason is now 42 years old. He lives in a small group home with two wonderful roommates and part-time staff. He is quite self-sufficient. He works in the mail room of a large agency. We see each other when we feel like it. I took him and his roommates out for dinner last night and we had a very jolly time. I sometimes take him to doctor appointments if something serious is going on but most of the time he is on his own or goes with a staff member.
Are you still working on projects regarding DS awareness?
I have been doing some public speaking recently which I enjoy very much. I have been talking to some DS parent advocacy groups and telling them about my life and my work in inclusion and the media. But, at 77, I’m taking it a bit easier.
If you could, for a moment, bend the ear of a new mom with a child who has DS, what would you say?
I think I’d say “take it easy, catch your breath, meet a bunch of other families, other children….don’t worry…. it’s going to be OK. This is the same child you would have had anyway….with all the things he or she would have inherited from you and your husband…. take one step at a time…have fun…learn…laugh…love….cry….whatever you feel….it’ll be OK. Find some other moms who are going down this road with you. Your baby will teach you the way. Lots of hugging, lots of singing, then lots more hugging.” I would also add that although Jason’s accomplishments were pretty impressive (starting to read at an early age, acting on television, writing a book, etc. ) All of that is NOT IMPORTANT AT ALL – and should NEVER be seen as a yardstick against which you should ever measure or compare your own child.
The ONLY thing that is important is that your child should be encouraged to do whatever YOUR child is capable of. Your child should be educated and stimulated to learn and grow and realize whatever is YOUR child’s potential! Celebrate and enjoy all the development and all the achievements your child accomplishes. That’s the only thing that counts! The more fun you have with your child, the better your child will do.
Emily loves music, mostly classical and Gilbert & Sullivan. She loves to travel and yes, she has been to Italy AND to Holland! (She loves them both!!) The tulip is now her motif found on her cards, stationery, etc. Emily adores tulips and pasta as well!
Emily shares about her son’s book:
- It covers lots of topics that many people think that people with DS don’t know about or care about or aren’t able to discuss. They talk about politics and world affairs and religion and school and family and girls and sex and marriage and so on and on and on. It’s pretty deep.
- It’s been constantly in print since 1997 – that’s a long time. It’s sold about 40,000 copies! It’s used as course material in many college courses and in many universities and medical school to illustrate what individuals with DS are capable of.
- After being in print for many years, the publisher came to Jason and Mitchell and asked them if they would add an additional chapter from the adult perspective now that they were grown up. So a new edition was put out in (I think) 2008 or something like that with a new cover photo and it just kept selling and selling. If you order it nowadays, you get the newer updated edition.
I do encourage you to get the book. It’s terrific and funny and uplifting and educational. It has a bunch of great photos in it too.
On a personal note, after initially reading, “Welcome to Holland,” I asked Emily’s permission to reprint her work on jewelry that I would gift to very new moms on this journey. She said yes and that line of “Touring Holland” necklaces are provided as a gift in several NICU locations as well as through Early Intervention services.
And don’t forget to check out our children’s Picture book!