Tuesday, February 19, 2008


This post is inspired by Dave Hingsburger who writes about his first time meeting a person with Down syndrome.

I first met Jake when I was about 14. His mom hired me to babysit him one day. I knew Jake had Down syndrome, but she never mentioned it. I guess in 1978 it wasn't as easy to integrate it into every day conversation as it is for me to do now.

Its funny how I can remember almost every detail of that day, more than 25 years ago. Jake was a happy, easy going little boy whose glasses fell to the tip of his nose many times. He would take his chubby little hand and push them back up again, never frustrated at how many times he had to do it.

We decided to play with his fuzzy pumper Play-doh toy, putting the little people on the barber's chair, and squishing play-doh through the holes of their heads so that we could give them a haircut. We made crazy hair styles, and had great fun playing - play-doh is also one of my favorite things to do with my children - nothing gets imagination and conversation going like making "cookies" or people or anything you can dream of.

Looking back, I'm sure we played with play-doh just because we wanted to, not because anyone had assigned the task to help with fine motors skills for Jake. And how nice that it was just a kid being a kid.

I had so little experience with anyone who was different, and had no idea what to expect from Jake. I didn't know what he understood and what he didn't, what he liked and what he didn't. All that I had learned from my own mother was so stereotypical - she used the antiquated words to describe people with developmental delays, and assumed they were all the same.

I remember telling my mother when I got home that day that Jake's hands were really dry and rough, and she told me that "their hands are always like that." For years, whenever I met anyone with Down syndrome, I was very conscious of their hands...always looking for those dry rough hands.

Today, one of the things I love the very most about Paige is her hands - soft and supple and very sweet. How very wrong my mother was.

After his lunch, we went out on their front porch to play. Jake decided to go into the house and when he did, he locked the door behind him. I tried to talk him into unlocking the door for nearly an hour. I teased and pleaded, and then....I knew....

I learned a lot about Jake in that hour it took me to convince him to open the door. I learned that he was sorely underestimated. He wasn't unlocking it because he didn't know how. Oh no...

That big belly giggle as he looked out the window beside the door told me he knew exactly what he was doing. He was in and I was out, and he was going to decide when that changed. He was very clever, and thought it was hilarious that he held the Power of the Door.

He would wander to the kitchen table, where he colored and sat for a bit, and then come back to the door to make sure I was still there. After a while, he tired of being alone and let me back in the house - opening the door lickety split when he finally wanted to.

Many people would read this, and say, "oh, people with Down syndrome can be sooo stubborn sometimes."

I don't know - in a world where everyone is always telling you what to do and when to do it, "stubborn" is probably a very good thing...

Strangely, I don't remember if Jake could speak or not. He was about 9 years old at the time, I think. I don't remember having any difficulty communicating with him, and knowing what he wanted as well.

I don't think Jake ever attended school. If he did, it was most certainly a "state school" for children who were classified as mentally retarded. I'm sure he never received any early intervention services like Occupational, Speech or Physio Therapy.

He lived across the street from the High School's soccer and baseball fields, and often I would see Jake riding his big wheel around and around in the parking lot of the fields when there were games going on.

Everyone knew Jake, and everyone watched out for him.

Last I knew, Jake worked as a janitor at the local high school - a school that would have refused him entry when he was a teenager - a place where he was an outsider at best. He's had that job for many years, and everyone at the school knows him. I hear he loves to get the newspaper every day and look at it from front to back. I'm not sure anyone ever taught him to read; I'm not sure it ever occurred to anyone that he might be able to learn.

I don't know if Jake's family still lives in the big yellow house with the front porch anymore. But if they do, I'd sure love to see Jake again - to sit on the front porch with him, and tell him thanks.

I understand, Jake - sometimes I want to lock the front door and watch the world from the window too. But sometimes, ya gotta take the Big Wheel out for a spin too...


Chris said...

Betsy, I envy you that experience. I am thinking back to when I first learned about Down syndrome. It was probably around 1978 as well. I had the unfortunate experience of being on the grounds of a state institution. I didn't understand what it was. It was isolated, and there were buildings with barred windows. I remember being told that it was a hospital for the mentally retarded (forgive the language--it is the language of 30 years ago.) I remember being scared. It seemed like a horrible place; I couldn't imagine what the people who lived there must be like. I think back of that place now and I get so sad. I think of all of the children like my son who were just left there, such a tragedy...I'm starting to feel the need to write a post about this. Oh how I wish there was a Jake in my childhood.

Shannon @ Gabi's World said...

What a fantastic story! You wrote it really well, too!

Debra said...

Betsy, I so enjoyed reading this. Do you mind if I post it on my blog. You did a wonderful job.

Debra and Hope

Kris said...

What a wonderful story, I really enjoyed reading it!