Pacific Northwest Magazine
Facing It All, Together
COURTESY OF THE PALMER FAMILY
COURTESY OF THE PALMER FAMILY
FRED MILKIE / SERIES IS COURTESY OF THE PALMER FAMILY
ROWLAND STUDIOS / COURTESY OF THE PALMER FAMILY
COURTESY OF THE PALMER FAMILY
COURTESY OF THE PALMER FAMILY
COURTESY OF THE PALMER FAMILY
Excerpted and abridged from the introduction and text of "Adventures in the Mainstream: Coming of Age with Down Syndrome" (Woodbine House, $16.95) by Greg Palmer, chronicling two years of his son's transition from high school to work. Palmer, a former KING-TV reporter and editor, is an award-winning writer and producer of family plays and PBS documentaries. He can be reached at firstname.lastname@example.org.
I grew up on Mercer Island. Then, it was the kind of suburb-to-be where every kid had a collection of Indian arrowheads he found, and Cub Scouts enjoyed almost real "wilderness experiences" in their own backyards.
Nine months of every year, from 1952 to 1965, I usually rode a big yellow bus to and from school. Every day the bus went through one of the island's first housing developments, a place called Mercerwood, where 50 new homes had been laid out on a once-forested hillside. One of the bus ride's regular attractions was there, on the front lawn of a house that was a little bigger than the others.
I have never known his name or where he came from. He was just there one day, and then every day, watching us go by. I saw him first when we were both about 8 years old. I assumed the bus was going to stop for him, that he was just another new kid. But the bus didn't stop. Gordon, the driver, slowed to a crawl, peered through his door at this little kid standing alone, then pulled away. We drove by, for the first time of a thousand times, and left him. That afternoon he was there again, watching us come home. If it didn't seem so crazy, you might have thought he'd been there exactly like that, all day long, waiting for us.
He was the first person with Down syndrome I had ever seen. I didn't know the term then, and it wasn't used anyway, at least by kids. Somebody told me he was a "Mongoloid I diot," a retard, and that's why he didn't have to go to school.
We grew up together, he and I, in the same place but in completely different worlds. It was a rare day when he wasn't there to watch the bus go past. He never smiled, but just stared at the bus with what writer Paul Goodman called "the open look." Goodman was talking about cats and the way they stare at you. But the description certainly fit this kid.
I waved at him a few times that first year. He didn't respond, except to look more directly at me. Eventually I stopped waving because I didn't want him to think I was making fun of him. From then on he always looked in my window, and I always sat on the right side of the bus to see him. I don't really know why. I remember he was always carefully dressed for the weather. Somebody inside that house cared about this boy and made sure he was presentable.
Only once during all those years was I around him off the bus. One warm summer day when I was 15, some friends and I were walking through Mercerwood. I spotted him a block away, just standing there. One of my friends lived nearby. I asked him about the kid, what he knew about him. The answer, to my surprise, was that he knew almost nothing, even though they had been neighbors for years.
"I'll tell you one thing I know," my friend said. "He's the best rock thrower I ever saw. He can hit a mailbox 50 yards away. I've seen him do it. So you don't want to piss him off, because he can get you from a long ways off. His pockets are full of rocks."
My friend laughed. "He could be a hell of a pitcher, if he was only smart enough to learn the game." Then we took off up the hill. It never occurred to any of us to ask him to come along.
My second son, Ned, was born in September of 1981. A few moments after he arrived, as I was counting his fingers and toes, he stuck his tongue out at me, and left it there. At the time I thought it was cute. I was to learn later that it was an "indication."
That afternoon our pediatrician stopped by to see the new Palmer. Dr. Dassel looked at Ned and then came by Cathy's hospital room. He asked us if he could run some tests on our infant son. "I think there's a 30 percent chance he's Down syndrome," Dr. Dassel said matter-of-factly. "And the test results could take two weeks, so we should get started as soon as we can." We agreed to the tests, of course, and Steve Dassel left us sitting alone in that room, stunned and silent, at the beginning of the longest two weeks of our lives.
That day, and many times since then, I've thought about the kid by the side of the road. In 12 years I never heard him speak, or saw him talking to anyone else. He seemed to have no present, no past, and certainly no future.
Cathy and I had an adviser at the time Ned was born, an aging psychiatrist who was an old friend of my father's. He told us to forget our new son existed. We should never see him again, he said, never even think about him. "Have another child if you want to, and get on with your lives. This one will be all right. I can pull some strings and get him into Fircrest."
Fircrest was and still is an institution for the developmentally disabled, north of Seattle. At one time, the place took care of a thousand people, although that number has dropped a lot. My father's friend said that immediate institutionalization was what people did in these cases, if they could afford it.
Cathy and I didn't consider institutionalizing Ned for a moment, even though there were people who told us we would ruin our lives trying to raise him. He is our son, and we have loved him from the beginning with all our hearts. After all these years I still find it appalling that anyone ever thought we could possibly drop him on an institution's doorstep and walk off. And I think of all those infants who actually were tossed away, infants now in their 50s and 60s, waiting to die in the only home they have ever known.
We vowed to keep Ned with us, but we also vowed to make his life as complete and satisfying as we could, given our resources and his abilities. In that, we have been very lucky. Our resources are pretty good, and Ned's abilities are in many ways phenomenal. That certainly doesn't mean it's always been easy.
I've been in Mercerwood only once since leaving the island to go to college. That was 10 years ago, when Ned was 13. He and I had driven across the floating bridge from our home in Seattle so I could show him his dad's old boyhood haunts. We started up Mercerwood hill, and I found myself automatically looking at that house.
I slowed down, but didn't stop. I wanted to explain to Ned that one of the reasons he has a lot going on in his life is because years ago his father knew a kid who stood in front of that house. But I didn't think Ned would understand, maybe because I don't really understand myself. I just know the specter of that boy has both haunted me, and motivated me, since the day Dr. Dassel made his visit. By now that boy by the side of the road would be almost a decade past the life expectancy of people with Down syndrome who were born in the 1940s. I'll never know what happened to him. But I did finally figure out what he must have been doing all day while we were in school.
He threw rocks.
SUITING UP FOR THE NEXT ADVENTURE
Sunday, April 18, 2004: When I was 11, my mother and I went to McCann's Men's Store in downtown Seattle to buy my first suit. I forget why it was decided I needed a suit at that particular moment in my life. I do remember hating the experience and hating Mr. McCann, who looked like Warren G. Harding and had the habit of talking about you as if you weren't there.
The only other thing I remember about suit-buying day was that my parents thought this was a very big-deal event. It was some symbolic rite-of-passage thing for them, a throwback to the old days when a young man's clothing maturation was charted and significant.
It was far from a big event for me, however. Mostly it was a spoiled afternoon. So I felt considerable guilt when Cathy and I spoiled Ned's afternoon. We went downtown and bought him his first suit, just one city block from where McCann's used to be. All I could do to improve the experience over my own 1958 agony was to not make it some big symbolic deal. That was easy, because Ned certainly saw it as nothing but a pain in the tush, even as he supports the reason he needs a suit. The first time he'll be wearing the suit is for his upcoming appearance with the Nathan Hale Wind Ensemble as guest conductor, leading the boys and girls in a rousing rendition of Sousa's "Liberty Bell."
I wasn't present for the actual suit selection. Ned and Cathy did that. It was relatively easy because George the Salesman said the store's "best tailor" wasn't around, so Ned didn't have to endure being measured. They just picked the black suit they wanted, or more accurately Cathy wanted.
I met up with them an hour later for the selection of accessories. It was one of those irritating occasions when Ned without warning turns into a stubborn 6-year-old. He glared at us or stared at his feet, and we had to ask him any direct question three times before he'd grunt an answer that was usually unhelpful. When he's in this mood and forced to answer something simple, like "Do you like this tie or that tie?", he will automatically say, "Yeah, OK," even if one of the ties features hand-painted dogs playing poker.
In one way, this reaction to clothes and the tedious rituals involved with their purchase is our fault. We've always taken the line of least inconvenience regarding his attire, never asking him to wear anything that wasn't very comfortable and easy to put on.
Like pants. If Ned has a pair of regular, zipper-up-the-front, long pants, I've never seen them. Since getting out of diapers, he's almost always worn sweatpants in cool weather and shorts in summer. The shorts do include some standard zipper-and-belt-loop configurations, but the majority of them have elastic waistbands. Although he has some shirts that button up the front, his top choice daily is either a T-shirt or a sweatshirt. Thanks to the miracle of Velcro, he's never had to tie a shoe in his life, and so has never learned how. Ned isn't the only one among his friends whose parents wrap their kids in sweatpants and slip-ons. When you've got only so much time and energy to teach a child to read, write, count and make it to the bathroom in time, why take some of it to teach him how to button a regular shirt when he never wears one?
We are paying for this missing element in his education now. On an otherwise lovely Sunday afternoon, his parents are suddenly asking him about ties, suspenders, belts and shoes heavier and harder than anything he's ever worn. No wonder he wants nothing to do with it. It's like suddenly asking a Hawaiian to pick among an assortment of mukluks and anoraks.
Eventually he'll have to upgrade what he wears if the job he gets is anywhere other than a gym or a sweatsuit factory. So I suppose it's best to go through this clothing catharsis now, when the upcoming event is something he wants to do so much. My fear is that for most of his life we have been too lenient with Ned about some of those necessary skills that are a big part of growing up and operating in adult society. In the daily trivia of existence, Ned eats, dresses and lives as he has for almost his entire life. He exists in a child's universe, with hot dogs for breakfast and toys forever at hand. We, and especially Cathy, have always tried to make sure he's clean, neat and presentable in public. Just because you have a developmental disability doesn't mean you should be shabby, grubby or inappropriately clothed.
But, until now, we haven't concerned ourselves much with age-appropriateness. And if he were going to spend the rest of his life in our home, perhaps it wouldn't matter. I don't want him working in a place where they allow him to slack off in any way just because he has Down syndrome. If the dress code or company style doesn't allow for sweatpants and sweatshirts, then I'll be damned if they make an exception for him. So we may be exacerbating what might already become a difficult situation. Just when he's nervous about starting his first adult job, he will also be upset about starting a new way of living. There's not much in his life he can control, but at least he's had a say in the comfort of his clothing. What happens when that control disappears so he can do something he's going to be ambivalent about doing in the first place?
After haberdashery frolics, Ned and I went to Merle Carey's house. Merle's a jack-of-all-trades crewmember at KCTS. Today is his 60th birthday, and he invited station folk to stop by. When we arrived, there were 10 people sitting around a large table. Besides Merle and one other staff member, Ned and I didn't know any of them. Nevertheless, Ned listened quietly to the conversation, joined in when he had something to say, wished Merle a happy birthday, and we left after a half hour. Nothing special, except that Ned was just another person at the table, and accepted as such after the strangers got over their initial "what's this all about?" reaction to his arrival.
Suit-buying aside, he's grown up now. These days when he switches emotionally from a 6-year-old kid to a 22-year-old adult in a matter of moments, it may whip his mom and dad around like crazy, but he seems to be able to do it easily. The good news is that the 6-year-old moments are diminishing.
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