Tuesday, April 22, 2008

A good path

An article that I just wanted to put out there....

“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 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.”

I first heard this piece by Emily Perl Kingsley when I was going through an orientation at my first job working with people with disabilities. The social worker read it to us, and it grabbed my attention. I was just looking for a summer job between my junior and senior years of college, and the spot in a group home would fit my schedule well. I really had not thought about it much more than that. But this, well, it made it real. I worked that summer in the group home where nine adults with developmental disabilities lived, and it became more real. I got to know the people behind the diagnoses, beyond the files I had read. I got to “travel in Holland” and see things through the eyes of those who had lived their whole lives in this very different place.

After I graduated from college I came back to the group home, and I worked with the folks there for several years. I eventually got promoted up and left the home, working in coordinating services for individuals living out in the community, but I kept in contact with the residents back at the house for a few more years. One of the men, George, took pictures for me at our wedding, rigged up with a camera operated by his pushing a button with his foot. One of the ladies, Susan, was the one to catch my bouquet; it flew right into her lap as she sat in her wheelchair.

I worked in service coordination for a few years, and became familiar with a lot of different disabilities that I had never heard of before. I became connected to a lot of people, those disabled and their supports, that I probably never would have met without that job. I had a degree in Psychology, but most of my learning happened after school ended. I have traveled an interesting and varied path since I left that job.

In the Service Coordinator position I had come across a huge need for appropriate and accepting child care for kids with disabilities. I took coursework to become a licensed childcare provider, and opened up a small day care in my home. I planned to focus on providing individualized care, especially for children with disabilities, and sent flyers out to all of the local agencies. Nothing.

My day care did get up and running, but it was filled with plain old, “regular” children. I was disappointed, but again was educated by the experiences in my life. I learned that rather than viewing disabilities as a cut and dry line that some children fell into and others did not, we all live on a continuum of sorts. We all struggle with with our own set of difficulties, some of which can be easily spotted and identified as disabilities with names such as Down Syndrome, autism, and ADHD, and some which a professional will never categorize or label. We all have strengths and we all have weaknesses.

I am now a homeschooling mom, with two daughters who have stretched, and rewarded, me in ways I never could have imagined before parenthood. As I help them to learn their schoolwork, we also learn together how to live our lives. We learn together how to take the strengths and weaknesses, the abilities and disabilities, that we have been given, and to do our best with them. We have recently added a foster child into our family, and he has helped us to see how each and every person has so much to offer, regardless of what labels have been applied to them. He has helped us to realize firsthand that even when the journey of life takes us down an entirely path than we had planned, it can be an amazingly wonderful path. Even when the path is not easy, it can be good.

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