Welcome to Holland - a new perspective
Perhaps you didn't know that for five years throughout the summers of high school, I worked as an "Integration Facilitator" for the City of Toronto Day Camps. I fell into this job last minute, by chance, and though I was unsure at the time, it proved to be a very rewarding and educational experience.
In the course of those summers I was often challenged in the attempts to integrate these children into the "Normal Day Camp" experience. Adaptation became key. I carried with me a whole fanny pack (terribly unfashionable I might add) of "transitional items" simply to travel from activity to activity. I learned a lot from that job. I learned a lot about children with special needs. I learned a lot about children in general. I learned a lot about tolerance and I learned a lot about myself. I realized then how difficult life had become for these parents. I couldn't imagine how they got through life, especially when I was having a hard time simply getting through the day. It was nothing short of exhausting.
I guess the reason I am bringing this up now is because something very strange happened today. I'm actually not even sure that strange is the way to describe it. Let me explain a little further. When I was working as an Integration Facilitator I would attend an annual training. It was basically a lot of ridiculous games, a guest speaker, a first aid refresher, etc. It always included a sampling of a "pivotal" scene from Rain Man (the scene in which Charlie attempts to board a plane with Ray, a perfect window into the difficulties of transition for someone with autism), and a binder full of resources to use throughout the summer.
Today, in what I can only describe as "fate-like", one of the handouts I have in my Integration binder, was forwarded to me within an email. It was sent from a friend of a friend - a lovely Mother I have only met once. She thought I might appreciate the perspective and outlook portrayed within the piece. Not once in my years of Integration training had I read it and cried. I remember thinking it was a good piece, a great way to try and explain the feelings a parent has when something happens to their child. I thought I got it. Reading it this evening, I'm starting to think that I never really did. Or perhaps I just have a different understanding now. I'm not really sure. What I do know, is that I read this again this evening, and it meant something entirely different. It meant more.
I can't expect that others will appreciate it the same, or understand it the way I do now, unless of course you are having a similar experience. By this I do not mean to sound some kind of "elitist". I do think, however, that you will perhaps have some insight, as I did so many years ago. Insight into the world that Paul and I are now living, the world where you end up somewhere you never really wanted to go.
For seven weeks I would work in an un-air-conditioned, aging school with children with special needs, including but not limited to Autism, Cerebral Palsy, Downs Syndrome, ADHD, a terribly sweet little boy who was Non-Verbal, Hearing and Visual Impairments.
In the course of those summers I was often challenged in the attempts to integrate these children into the "Normal Day Camp" experience. Adaptation became key. I carried with me a whole fanny pack (terribly unfashionable I might add) of "transitional items" simply to travel from activity to activity. I learned a lot from that job. I learned a lot about children with special needs. I learned a lot about children in general. I learned a lot about tolerance and I learned a lot about myself. I realized then how difficult life had become for these parents. I couldn't imagine how they got through life, especially when I was having a hard time simply getting through the day. It was nothing short of exhausting.
I guess the reason I am bringing this up now is because something very strange happened today. I'm actually not even sure that strange is the way to describe it. Let me explain a little further. When I was working as an Integration Facilitator I would attend an annual training. It was basically a lot of ridiculous games, a guest speaker, a first aid refresher, etc. It always included a sampling of a "pivotal" scene from Rain Man (the scene in which Charlie attempts to board a plane with Ray, a perfect window into the difficulties of transition for someone with autism), and a binder full of resources to use throughout the summer.
Today, in what I can only describe as "fate-like", one of the handouts I have in my Integration binder, was forwarded to me within an email. It was sent from a friend of a friend - a lovely Mother I have only met once. She thought I might appreciate the perspective and outlook portrayed within the piece. Not once in my years of Integration training had I read it and cried. I remember thinking it was a good piece, a great way to try and explain the feelings a parent has when something happens to their child. I thought I got it. Reading it this evening, I'm starting to think that I never really did. Or perhaps I just have a different understanding now. I'm not really sure. What I do know, is that I read this again this evening, and it meant something entirely different. It meant more.
I can't expect that others will appreciate it the same, or understand it the way I do now, unless of course you are having a similar experience. By this I do not mean to sound some kind of "elitist". I do think, however, that you will perhaps have some insight, as I did so many years ago. Insight into the world that Paul and I are now living, the world where you end up somewhere you never really wanted to go.
by
Emily Perl Kingsley.
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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......
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 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 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.
