Welcome to Holland: a parent’s perspective on disability

We’ve met some fantastic new friends through our Asperger’s parents network – if you don’t have a network in your area, I really encourage you to start one of your own. Our psychologist helped get us started by asking parents if they’d like to participate and another Mom and I just took it from there!

I love these parents so much – their humour, their ideas, the stories they tell about their kids and themselves – they really energize me. I have learned so much from each of them. Recently, a mom in the group sent me Emily Perl Kingsley’s well-known explanation of what it’s like to give birth to a child with a disability and asked me to share it on my blog, since it really spoke to her. I’m reprinting it here and wanted to share an interview with Kingsley that appears on a blog called Love that Max. Kingsley, a multiple Emmy-award winning writer for Sesame Street, has a son with Down Syndrome, who is now 36-years-old.

I’d love to hear your comments on this piece…and I should say right away that tulips are my favourite flower.

Welcome to Holland: by 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, Michelangelo’s 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 stewardess 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 flight plan. They’ve landed in Holland, and there you must stay.

The most 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 guidebooks. 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 awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland 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.”

The pain of that will never, ever go away, because the loss of that dream is a 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.

 

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1 Comment

Filed under Celebrating Difference, Diagnosis

One response to “Welcome to Holland: a parent’s perspective on disability

  1. Sonia

    Thank you for posting this beautiful note! Raising a child is not easy, as I like to tell people around me: “If they came with an instruction book it would be awesome, but since there’s no manual…I try to do my best, and nobody is alowed to judge my job!!”

    Having a group of persons to share and laugh with, makes the journey lighter and brighter, the one sad part is the wait beetween each time we see one another! That’s why it’s important to include a broad group of support: family, friends, co-workers…It kind’of gives them an ownership and understanding of life and people around them.

    After posting an event on Facebook that happened with Maryse, my aunt sent me a message thanking me for sharing our life with Maryse, has it happens. It’s very comforting to know that my aunt (and maybe somebody else?) can learn from little messages like the ones I’m posting on FB for the month of april.

    Take care! See you soon AM!
    Sonia

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