How The Tables Do Turn

Within a week of my arrival home, I happened upon a television film, “Kids Like These”. Although now it would appear extremely outdated, back then – more than thirty-five years ago - it was extraordinary, a first, and to me an absolute inspiration, I was bowled over by it!

But the coincidence of it was overwhelming! Was it an answer to my prayers? I’d certainly done a lot of that in the previous three weeks! How often had I sent my sister to the library to look for books showing photos of these children? How could I have never even seen one myself? They were hardly rare!

But there, laid out before me, were seven of them, all different children – even a new born - playing the role of Alex as he grew, and all of them had that same label as the baby boy I’d just brought home with me from hospital - Downs Syndrome.

The film followed the first twelve years of Alex, the son of Emily Perl Kingsley (a writer and part of the Sesame Street team). It told of her battles with the hospital at his birth, so like my own, and her determination to do everything possible, not only to help her son progress, but also to educate the masses - especially medical staff - on the learning abilities of people with Downs Syndrome. The film ended with her receiving The Woman of the Year Award where her now famous, and very moving piece of prose, ‘Welcome to Holland’, was first aired.

Welcome To Holland

By Emily Perl Kingsley

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

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 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.

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.

She became my inspiration; and I adopted her techniques in my upbringing of Ben - multi-coloured balloons attached to his pushchair, constantly talking to him, explaining everything I did, singing songs and nursery rhymes with him, counting or describing everything we saw or passed... I’d scour charity shops and car-boot sales to find an extensive range of different toys so that he might explore a variety of textures, sounds, images, anything to enable him to encounter as many experiences as he possibly could. Stimulation, stimulation, stimulation!

Throughout his childhood I kept this teaching technique going, and as he grew and I witnessed his remarkable progress, I would send out silent thanks to that amazing woman and her motivational and oh so empowering film.

Would I have taken on that role of a mother lion and fought those constant battles just for him to be able to join local clubs, do judo or become a boy scout like any other kid, be adequately schooled, be accepted, and welcomed even, if I hadn’t been so motivated by her? Would he be the remarkable, able young man that he is now without her inspiration? I don’t know. But I thank her all the same for the gift she gave me, the gift that changed my life - hope.

When Ben was twelve, I set up a website to show the world how wonderful and beautiful our children are. Speaking both English and French had enabled me to join many international online groups and I was in contact with families of children with Downs from around the globe; and I wanted to share and celebrate all of them with the rest of the world. Nowadays there are many such websites, but back then there were none, the idea was unheard of.

Parents sent me photos, potted histories, their children’s achievements, any health issues, what attitudes were like in their countries, what support was available; and I celebrated each child individually with their own page.

In another section I displayed artwork they had created, another their writings and then I decided upon a ‘Poems and Prose’ section to display all the beautiful words from across the world, written about our children…but I knew I couldn’t have such a section without Emily Pearl Kingsley’s ‘Welcome to Holland’ in pride of place.

It took a while, but eventually I managed to discover her email address – I knew her prose was copyrighted and I needed her permission to use it. I sent her a relatively formal email, with a link to my website expecting for it to neither be read nor replied to or, if replied to, by some mere underling in the office.

Three days later I received a reply…from Emily Pearl Kingsley herself! I was ecstatic. But what to reply? Just a thank you seemed rather lame, and besides, I didn’t want to lose her so soon, having only just found her after all these years. Finally, I decided that truth sprinkled with a little humour might work best…

My reply went something like this:

OMG the legendary Emily Pearl Kingsley, writing to me! In person! I don’t believe it! You have always been my hero! My mentor! My inspiration! Don’t go thinking I’m going to let you get away so easily by merely accepting your permission, I have way too many unanswered questions!

Why was there never a sequel of ‘Kids Like These’? What ever happened with Alex? How is he? I’ve been waiting years for the rest of his story! Oh, please do tell all.

And it worked! That reply was the beginning of a daily email exchange that continued for almost two years.

At first we just exchanged and compared life experiences, anecdotes of sticky situations and funny little stories featuring our boys, then as we got to know each other better, our difficulties and frustrations began to emerge. And Emily, who had achieved the world as far as I was concerned, was in a bad place; she was feeling defeated and appeared to be on the verge of giving up hope. Jason (Alex in the film) had moved into his own flat and it wasn’t working; he was finding it all too much and wasn’t able to cope. She felt she had not only failed him, but neither had she achieved her ambition; that of him living an independent life.

I couldn’t believe that someone who had accomplished so much, had immensely improved the lives and opportunities of thousands of individuals with Downs - whose own son had written a book even! - could even contemplate herself as a failure. And I told her so!

I reminded her of all that she had achieved, how loved her beautiful piece of prose was and how thousands of parents still clung to it like a bible, how attitudes had changed, the hospitals, the doctors, schooling – all because of her!

I told her of the millions of other parents who must have been as empowered as I had been by her film – the first to ever use children with Downs as actors (she had told me how she’d really had to fight for that!), the millions of viewers of Sesame Street who watched as children with Downs, and many other disabilities, were brought directly into their own living rooms, learning about them, seeing what beautiful children they are and witnessing their amazing achievements.

And through our exchanges I gradually saw her begin to blossom, to start to believe in herself again and to gradually regain her confidence. How the tables do turn. I was stunned by how our roles could have been so dramatically altered, I the student had now, somehow, become the mentor.

She had given me precisely what I had needed at a time when I so desperately needed it, and now, all these years later, I was so pleased to be able to finally repay her and return to her exactly what she had given to me - hope.