In 1974, Emily Perl Kingsley and her husband welcomed a son, Jason, into the world. Jason had Down syndrome, and the dire predictions of medical professionals in the 1970’s left little hope for the Kingsleys. Thirteen years later, Emily Perl Kingsley wrote her essay, “Welcome to Holland”, about raising a child with a disability. Her experience was vastly different than anticipated, and she wanted to share her feelings as a parent of a child with a disability to correct the misconceptions often associated with having a child with special needs. Through the metaphor of an unexpected change to vacation plans, Emily Perl Kingsley shows that raising a child with a disability is different than rearing a typically developing child, but it is equally rewarding and fulfilling.
Kingsley begins her essay by comparing having a child to planning a vacation to Italy. The eager traveler prepares for the vacation: “You buy a bunch of guide books 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” (Kingsley). This is precisely what most expectant parents do: they buy baby books instead of tour books, learn a new language of feeding, diapering and nurturing, and plan for all of the exciting and amazing moments they will experience with their little bundle of joy.
Unfortunately, this plane doesn’t reach its intended destination. Instead of landing in stimulating, sophisticated Italy, the jet touches down in peaceful, picturesque Holland. Dismayed, the vacationer exclaims, “‘I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy’” (Kingsley). The feeling of forfeiture and incredulity is the same felt by mothers and fathers who anticipate a typically developing child, but unexpectedly receive a child for whom they are woefully unprepared. There is disbelief and overwhelming dismay at the prospect of facing a new, uncertain future.
Alone in this new place, the stunned tourist becomes prepared out of necessity. Kingsley writes, “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.” This, too, is true of the parents of babies born with disabilities. To care for the child they love, they immerse themselves in the study of physical, intellectual, and emotional development. Medical specialists and special educators become part of daily life. These professionals speak in a foreign tongue of acronyms and technical jargon, and sometimes even misinformation. The parent becomes the child’s strongest advocate and must speak fluently and confidently to protect the little one’s best interests. Conversely, there are new friendships with other families, sprouted from the seeds of a unique and shared experience. These relationships provide friends and allies in a time when new parents often feel alienated from their normal circle of friends.
At last, after this whirlwind of education, the transplanted traveler has the opportunity to realize The Netherlands is indeed unlike Italy in many ways, but not necessarily displeasing: “It’s slower-paced than Italy, less flashy than Italy…. you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts” (Kingsley). Parents of youngsters with disabilities watch their progenies develop at a slower pace than others, and often celebrate small endeavors overlooked in the average tot. Yet, each milestone or achievement is still beautiful in an uncommon or unpretentious manner – like the unusual shape of a tulip or the simple, powerful turning of a windmill. Every accomplishment is more appreciated because of the extensive time and painstaking effort applied to complete it, much like an exquisite painting. “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,” explains Kingsley, because raising a child with a disability is not awful or unbearable.
Legitimately, Emily Perl Kingsley addresses the loss felt by this unforeseen itinerary change and the cultural differences that will forever separate the Hollanders from the Italians. “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’” (Kingsley). This also rings true for parents of children with disabilities. They lost a child – the typical child they imagined and anticipated – and the pain of that loss never dissipates entirely. In spite of never having embraced or encountered that fantasy child, there is still a void in the soul where that child was meant to reside. Sometimes, watching other parents with their typical children exacerbates this sense of loss, because it is a reminder of that dreamed child.
Kingsley completes “Welcome to Holland” by sharing that “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.” For parents of children with special needs, this is sage advice. A child with a disability is still first and foremost a child, offering the same gifts of love and joy as all children. Granted, certain experiences are lost, but others are gained. These new experiences may not be the expected, but they are no better or worse – just as Holland is neither superior nor inferior to Italy – just different from the norm. Kingsley assures that although these gifts are obtained via a different route than expected, they are equally precious. It is important to see beyond the shock of diagnosis to the unique, inspiring blessing that is each child.
Kingsley, Emily Perl. “Welcome to Holland.” Our-Kids.com. Emily Perl Kingsley, 1987. Web. 7 Nov. 2012.