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 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 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...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 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.
By Emily Perl Kingsley.
Copyright © 1987 by Emily Perl Kingsley.
Reprinted with permission of the author.
All rights reserved.
Caitlin shares her story and some advice for readers.
Hi, my name is Caitlin. I am 26 years old and I was born with Cerebral Palsy, diagnosed at 18 months. My parents encouraged me to try everything.
I tried Sparks at five years old (Girl Guides) and made it all the way to Pathfinders eight years later. I did my best to get all the required badges and aprticipated in all the trips, with some help along the way.
I took swimming lessons until I was about 13 and I'm comfortable in the water. I started Tai Kwon Do when I was six and I made it to Black Belt at age 16. I started swimming and Tai Kwon Do for therapy but I stuck with them because I enjoyed them.
I went to a regular school until grade six and finished high school with a General Learning Certificate. I then went to college to a disability program to learn more life skills. In high school I did a co-op program at the local grocery store and continue to work there with paid employment today.
I enjoy keeping diaries and scrapbooking here and there. I have a scrap book for every Olympics since 2000. I've always been interested in photography. I guess I got that from my Dad. My Dad and I have done a lot of travelling and photo shoots together and last year we decided to do a photography book. It was published in 2015 and is a big success.
I look forward to what the future holds for me. When I was younger I wanted a mentor who had CP but that never worked out. I encourage every child with a disability to live their life to the fullest and I would love to be a mentor to someone.
Thank you Caitlin! You can find more information about Caitlin's book online.
Andrew D. wrote this essay and presented it to his classmates when he was in 5th grade.
Hi, my name is Andrew, and I'm in the 5th grade. I have something called Asperger's Syndrome, which is a form of autism. We call it AS for short. My family and I found out about my AS when a doctor told my parents around the time I started second grade. Before that, I didn't know why I acted so different from other kids my age. We went to a lot of doctors to find this out.
Having AS doesn't keep me from learning things in school like my classmates, it just means that I learn in a different way, and sometimes need extra help from teachers and aides. There are lots of things I have trouble with, like loud noises or when there are too many types of noises at once, like lunchtime in the cafeteria. It can be really distracting for me, especially if I'm supposed to be paying attention to something. Sometimes I can be distracted by the silliest thing, and it can be really hard to re-focus on what I'm supposed to be doing.
I also have trouble with writing, mainly to get my ideas on paper, which is why Mrs. R. sometimes helps me. Being organized is another thing I have lots of trouble with. This can be a problem when I need to write down homework or pass it in. Mom says I should find a place for everything, and keep everything in its place so I can find it when I need to.
Then there's understanding directions. I have a really hard time if there are too many directions, or if they're not written down. I also have a hard time understanding sarcasm or how other people feel. This sometimes makes me feel lonely, when other people trick me by using sarcasm. Sometimes at recess, I have a hard time knowing what to do and it can seem like I'm causing trouble, but I really just want to be part of whatever game the kids are playing. Mostly, I find it really hard to make friends because the way I sometimes act can seem strange to my classmates. I just want people to know that I do not act this way on purpose. Sometimes I can get frustrated or angry when I have a hard time understanding others or even when I'm trying to explain things to other people.
Having AS makes my brain work differently, and sometimes I can feel like I'm on overload. This means that there might be too much going on around me, and my brain is trying to pay attention to all of it at the same time. I'm trying really hard to learn when I'm being overloaded, or when I'm about to have a meltdown, so I can go to a quiet area and quiet things down a bit. I wish I could control my brain's reactions to these things and I'm trying really hard to be like my classmates.
Some kids might think it's fun to tease the boy with funny hair or make fun of the girl with a lisp, but it's never okay to tease kids just because they are a little different. Mom says that just because you can't see someone's feelings doesn't mean they don't have them. Lots of people have issues, or things that they have to work really hard at. Some things you can see, and others you can't. Some kids have dyslexia, which gives them trouble with reading; some kids think math or science is really hard; other kids might have CP or some other thing that gives them trouble. I'm really lucky that my AS isn't like that. But it does mean that I have to work harder at trying to stay focused in class, or trying to be flexible when playing games at recess. Basically, I have to work harder at a lot of things that most kids find really easy, like sports; some kids are really good at football or soccer, like my best friend. I'm not really good at football or soccer.
There are lots of things I can do really well, like math, reading and playing chess. And of course, playing video games. I really like to learn about the solar system, the stars and the universe, and have been wanting to be an astronaut since I was 3. I could talk about Pokemon, YuGiOh or Power Rangers all day if I had the chance. Another thing is that I can sometimes find patterns in things that most people wouldn't normally see. I'm also good at knowing what the rules are and can sometimes get upset when other people aren't following them. I am like other kids in lots of ways, too; I like to ride my scooter, and learn karate, and be a Boy Scout. Mostly, I just want to do the best I can and make my parents proud just like other 5th grade kids. I really just want to be like the other kids and play and have fun with friends.
I hope this story has helped you to understand me a little better. If you ever have any questions about Asperger's Syndrome, you could ask my mom. She helps lots of people understand it, and would like it if you could understand it, too.
Thanks for listening.
Thank you Andrew!