Greg Palmer IDEA Conference, Spokane, WA January 1999 © 1999 Greg Palmer

Reprinted with the expressed consent and approval of author. This article is copyrighted material and should not be republished or used in any way without the author's permission.

I also cannot give you the benefit of much experience seeking professional help, either with questions about the care and raising of Ned, or about dealing with his parents' emotional upheavals. The fact is that Cathy and I, except on two more or less unfruitful occasions, have never sought professional help, either for Ned or ourselves, except as far as education is concerned. Being in essence researchers, when Ned was born we did a lot of reading about his situation, and we still do, but we decided without much discussion that we were going to do this ourselves. This was deeply imbedded in both our family traditions, and shouldn't be taken in any way as an endorsement of doing it yourself. Get all the help you can wherever you can get it and whenever you think you need it — that's certainly something I agree with. It just doesn't happen to be my experience, in this and most other family-related matters.

The principal conclusion we reached as a result of that initial research was that we didn't need to expand our parenting skills — those skills we had already developed with Ned's older brother Ira —- but instead intensify the parenting skills we already had. A lot of that was finding equivalents for Ned of what we already were doing, and had done, with Ira. For instance, Ira was in his first play group when he was literally three weeks old — and some of the other kids in that group are still friends of his 21 years later. Ned was in his first Infant Stimulation Class at the University of Washington's Experimental Education Unit when he was three weeks old, and some of the other kids he was with are still his friends and classmates too. We started reading every night to both Ira and Ned when they were very young indeed — far too young to understand what was being read — and at least for Ned that continues. About the only difference between them is that there came a point when Ira didn't want Mom or Dad reading to him any more as he was reading the things he wanted to read on his own. Whereas Ned still enjoys reading with us every night, even though he too has his own books and reads them a lot...

Ned is eighteen now. If I had to describe him in one word it would be that he is an historian, especially in matters that he can connect in some way to his own life or personal history. He has long been a fan of old rock 'n roll, an interest he developed when he first learned his late cousin, Jon Felton, was an old rock 'n roll star. (For the ancient in the audience, Jon was the bass singer in The Diamonds, the guy on their hit "Little Darlin'" who says "My darlin', I need you, to hold your little hand in mine..."etc.) Jon was killed in a plane crash not long before Ned was born. He became this mysterious, unattainable figure in Ned's life, and that led to a boy who listens to old rock constantly and can beat anyone I know in old rock "Name That Tune," not only with the title of a song after just a few notes, but the names of the singer, the composer, and the year of composition. He is the same way about anything to do with the Titanic, although there's no family connection there that I know of. When the musical "Titanic" played at the Fifth Avenue Theater in Seattle, they had a huge placard in the lobby listing every passenger on the ship, with asterisks by the names of those who survived. I took Ned, and he studied the placard, and started to tell me what happened to the survivors, how long they lived, where they lived, etc. Eventually a little crowd gathered, and Ned just naturally went into his lecturing mode. People were amazed, I was proud, and Ned took it as just what should have happened. He developed his Titanic fascination long before the big film, by the way, and in fact during the movie kept leaning over to me and whispering, "That's not right," or "It didn't really happen that way." He doesn't make this stuff up, either. He knows it.

His other fascinations are Mt. St. Helens, the history of Seattle — because he is distantly related to the Denny family — ghosts and hauntings generally, the Rolling Stones, dinosaurs, playing his guitar, and songs, which has led to a collection of now more than a hundred well-read song books. In the credits for the documentary on vaudeville I did for PBS, Ned is listed as a researcher, and it's a real credit. He did much music research for that show, and is the person who came up with the fact that "Take Me Out to the Ball Game" was written by a vaudevillian for vaudeville.

He also can be sometimes unbelievably to the point, and in an interesting way. His older brother played on the lackluster Garfield High School football team, and Ned and I went to one of their games, in which Garfield was, as usual, getting creamed. Midway through the second quarter, with the score something like Ingraham 24, Garfield 0, Ned turned to me and said, "This is like the herbivores against the carnivores." I looked around to see where he'd heard that but there was nobody near us, and I don't think he'd heard it anywhere else. It just occurred to him — a line any sportswriter in America would be proud to claim.

That's the good stuff, or part of it. On the less than charming side, he is the most awesomely stubborn human being I have ever known. His stubbornness about some aspects of his life is practically breathtaking. You'd admire it if it wasn't such a problem some of the time. A lot of it has to do with food. The first cookie Ned ever had was a Chips Ahoy. And since that time a decade and a half ago, he has never had any other kind of cookie. He eats Chips Ahoy cookies, and that's it. He's never had a piece of candy, because he has Chips Ahoy instead. For breakfast, for fifteen years, he has two or three hot dog wieners — no bun, just the dog — plus dry Cheerios, milk, two pieces of toast, a glass of orange juice when we absolutely force him, and that's it. Never anything else. I kept waiting for his pediatrician to say such a diet wasn't good for him; his pediatrician never did, and pointed out that Ned's in better health than I am. The only soft drink he drinks is Coke — he has never had any other kind — and there has to be a straw or he won't drink it, no matter how much he wants it. Awesomely stubborn, and set in his ways about some things.

For a very long time he has been a very cute boy, not just to his parents, but to practically everybody he meets. I've never fully trusted people who dislike cats, and I really don't care for people who, at least historically, haven't responded at least a little positively to Ned. But he's 18 now, and increasingly the reaction of strangers is not to step up to him, but to take one step back. He's still a boy, still looks like a boy, but an older teenage boy, and just as they aren't all that cute in the "normal" population, so Ned isn't either. It is, for him, the end of cute — in a general way, at least — and even though his parents see that, I don't think he does yet.

Ned has always been very gregarious. He can work a room like a Kennedy, and fifteen minutes after arriving some place can tell you the first name of everybody in the room, and something about them. When he was younger we encouraged him to do this; it was good for him, and good for the people around him too. An example: He and I usually go to a Memorial Day Service somewhere, and a few years ago there was a bigger-than-usual do at Evergreen/Washelli, the cemetery in North Seattle where most of the Northwest's military dead are buried. That particular year they were re-dedicating a statue of a World War One doughboy that had been forgotten at the Seattle Center and moved to Washelli. When Ned and I arrived, rain was threatening, and we slipped into the covered VIP area. Shortly thereafter, Seattle Mayor Paul Schell arrived — he was one of the speakers. He started working the VIPs, shaking hands, etc., saw and recognized me. He came up and said hello, I responded, and then said, "Mayor Schell, this is my son Ned; Ned, this is Mayor Paul Schell." The Mayor put on his biggest smile, leaned over and said very clearly, distinctly and slowly so fifteen-year-old Ned would understand, "Ned, how are you?" And Ned answered, "Fine, Paul, how are you?" The look on Paul's face was worth the whole day's trip.

He has the unshakable belief that everyone he meets is as interested in the Titanic and ghosts and Seattle history as he is, and if allowed would go on to strangers about these topics until his listeners fell over dead. I find myself now rescuing people from him far sooner than I used to. It's all part of the end of cute. That's not the only change that has come about with age. Some years ago I was one of the contributors to Don Meyer's collection of essays by the fathers of DD kids, titled "Uncommon Fathers." When the book came out, I was surprised Don had chosen to order the essays by the chronological ages of the children being described. It seemed to me there might be other ways to do it, like by the degree of retardation, which can make so much difference in parenting. But now that Ned's older, I can see Don had it right. The changes that happen — to child and caregiver — as the child grows to adulthood are profound, and sometimes profoundly disturbing.

If you look in the dictionary for the word, "retard," at least the first definition is 'slow.' Nothing more. So as the parent of a "retarded" child, especially a mild to moderate child, it's possible to imagine that life is like the New York Marathon. There's always that guy from Sierra Leone who finishes two hours ahead of everybody else, then there's the pack of ten thousand runners, and finally, two days later, coming across the line is the guy who's half dead and panting like a pack mule. He's the "retarded" runner, the slow one. But he crosses the same finish line as all the others; it just takes him a little longer to get there. So it could be with intellectual development, slower going, but eventually achieving the same goals as everybody else.

That's certainly the way it has been with Ned. We've read the same books to him that we read to his brother; we've just spent more time with each level of book. So Ira whipped through those godawful Curious George books, whereas it seemed like I was reading them to Ned for 60 years. But he has certainly advanced. Right now his mother and I alternate nights, so she's reading the Hardy Boys mysteries, apparently every last one of them. And he and I are slogging through "The Lord of The Rings," which I think he understands better than I do, because he can remember all those needlessly complex and similar names and places.

Another example — in the fifth grade Ned was the only nominee from his elementary school for the Mayor's Reading Improvement Award. With 150 kids from other schools, he and I went to a big ceremony in town where he got a certificate and a book for being the most improved reader in his fifth grade class. Ned was two years older than any other winner in the room. But he got the award, and he deserved it. The fact that it took him longer to get to the same place was inconsequential — to me, to his school, to him. He has advanced intellectually, heading for that same finish line.

But the time has come when I have to consider that he's not going to make it; that his finish line isn't the same one; that he's hit a wall in his intellectual development that he can't get past. Last year in high school he was, at our insistence, mainstreamed into The Academy, something all regular education first year people take at his school, combining history, literature, math and science. The homework was a lot tougher than anything he was used to, which is why we almost always did it together. But he got most of it, in large part because of his awesome memory. The same brain that can remember who wrote "Bye Bye Love" and what year the Everly Brothers recorded it can remember facts concerning the Revolutionary War.

One night we were working on a take home quiz, with one of the questions asking him to compare and contrast Tibetan Buddhism with Indian Buddhism. I must have spent 45 minutes going over the reading with him, listing the differences and similarities of the two, talking to him about it, until the time came to actually answer the question. I said, "Ned, do you understand what you have to do?" and he said "Dad, I haven't a clue." It was the first time he ever told me he didn't understand something in a way we both knew meant he would never understand it. No matter how much time we took, how may times we went over it, it would be beyond him. So I have to now accept the fact that there are some things he won't understand, some analytical thinking he will never be able to do.

But that's not giving up, even though, in one sense, his school seems ready to give up. One of our problems now with Ned in a public school is that the Special Education department turns distinctly and then exclusively vocational as DD kids become juniors and seniors. There is, as far as I can tell, not a single literature, history, language, math or science class especially meant for a junior or senior DD student in his high school. But there are lots of opportunities to learn how to clean tables in the lunch room, go to retirement homes and learn how to make beds, clean cages at the local veterinarian's, etc. One vocational person at the school actually told us that the students who cleaned the tables in the lunchroom every day "clean each table twice, so they get twice the experience."

We've informed the school that we don't send our child to high school to learn to wash cafeteria tables. We want Ned to have at least the chance to learn something that isn't vocational scut work. For instance, this year he's taking an American History class that is for English As A Second Language kids. It's a bit harder on the teacher, because most of the homework she gives is language-comprehension based, and that's not what Ned needs. So we have helped her devise home and class work that applies more to Ned. And we're ready and able to do that until he graduates next year. We're not only ready — we insist on it.

Our ultimate goal as parents is to provide Ned with what he needs to be happy for the rest of his life. It's not an impossible goal. As a television news reporter I had the opportunity to spend a day with, as far as I and the National Down Syndrome Congress knows, the only Down syndrome married couple in America. They work together in a sheltered workshop; they have their own apartment, they bowl in a league, a woman comes in a few times a week to help them plan menus and manage their finances, and they are happy. And I've seen the other side too. I did a story about a man who is physically 37 and mentally about six. When he's lucky, he sleeps on a mattress on the floor in the basement of a Pioneer Square tavern and earns food money sweeping the place out. Other than that, he lives on the streets. The homeless shelters won't take him, because the retarded are so frequently victimized by the other residents. Shelters would rather have the mentally ill than the mentally retarded, because the ill scare the other people so they're left alone. So this person, who is a six year old in everything but physical age, is out there on the city streets tonight; cold, alone and frightened, without a friend in the world. I think of him often, and that's why I will do whatever it takes to make sure it doesn't happen to Ned, no matter how long he outlives his mother and me.

The biggest difference between us, the parents of a developmentally disabled child, and every other parent out there, is based in that goal. My older son, Ira, is 21. He's at the point where his happiness for the rest of his life is his responsibility. We've done what we can. We've given him a good and loving home, a good education, the creature comforts that were possible, and, I think, a good sense of honor and integrity, a good sense of dignity. Now he's on his own.

We've given Ned all those things too — the difference is I'm just as responsible as he is for his happiness, and I always will be; not to my death, but to his. None of us parents will ever be empty nesters, because at least emotionally, our nests will never be empty. But we tend to judge happiness on our own terms. If I had the limitations Ned will have as an adult I'd probably go nuts. But maybe he won't — maybe he'll find a happiness that suits him, even if that includes a job washing cafeteria tables. It's only fair to his school to admit that he loves washing cafeteria tables at his high school. He does it voluntarily every day, and frequently the principal, a fine guy named Eric Benson, joins him.

I've actually seen a direct example of Ned's concept of happiness in relation to my own. Two summers ago I got him a job working in the mailroom of our public television station, while I was down the hall working on a PBS documentary. I was frequently miserable, or at least tense, dealing with various problems involved with production. Ned was gleeful every day. He had mail with names on it, mail that went into slots with names on them. He had a lot of visitors every day, people who wanted to schmooze with Ned, who wanted to tell him jokes and listen to his jokes. And I realized something that has been of great comfort to me — that has in fact led me to envy him a little. Everything Ned will need in life he'll be able to memorize. No analysis will be required. Ned will never say about his boss, "I wonder why he said that?" He will live the kind of simple, straightforward life, because he will have no other choice that a lot of "normal" people crave, and go off into the woods to find. Ned carries his Walden Pond around with him. True, such a life precludes a lot of activity that I hate to see him miss, but the point is he doesn't miss it, so he has no regrets. Like driving. When Ira got his license, and his brother was 13 at the time, Ned talked about how he couldn't wait until he was 16 to get his own driver's license. But he never mentioned it again. He doesn't need to drive, because we take him where he wants to go, and none of his friends drive either, so he doesn't even see it as a possibility. He doesn't miss it.

I have an image of Ned's life as an adult that gives me peace — and in one sense he provided it. As I said, we read to him every night, and one of the things he and I have been reading for years is four or five poems a night. We have our favorites. Last year in his English class, one Friday the teacher gave her students the weekend assignment to find a poem that meant something to them, and memorize it to recite in class during the following week. Ned put his hand up, and the teacher started to tell him how he didn't have to do the assignment if he didn't want to. Ned said, "I'm ready now," and she, shocked but expecting something in the "Roses are red, violets are blue" vein, said "Go ahead." Ned stood and recited this, by Georgia Roberts Durston:

When the pale moon hides and the wild wind wails,
and over the tree-tops the nighthawk sails,
the gray wolf sits on the world's far rim,
And howls; and it seems to comfort him.
The wolf is a lonely soul, you see,
No beast in the wood, nor bird in the tree,
But shuns his path. In the windy gloom
they give him plenty, and plenty of room.
So he sits with his long lean face to the sky
Watching the ragged clouds go by.
There in the night, alone, apart,
Singing the song of his lone, wild heart.
Far away, on the world's dark rim
He howls, and it seems to comfort him.

I'm not optimistic about the world Ned will become a man in. Generally speaking, I don't think it is a welcoming place. And the problem isn't the individual bully; he's never had that problem in school and I don't see it happening as an adult. People who work for the preservation of animal species know that it's almost a waste of time, energy and resources to try to save an individual creature. It's the salvation and preservation of habitat that's important. And it's the habitat Ned is inheriting that I think is dangerous.

Some years ago I applied to an organization that funds public television programs. They'd sent out a Request for Proposals for programs about "Cultural Identity," which is grant speak for programs having something to do with minorities. Specifically, they said in the Request that they were looking for series in which, "race, culture, religion, nationality, gender, sexual preference, region, politics, etc. are all fitting subjects for examination." I proposed a series called "Adrift in the Mainstream." I began the grant application form with this introduction:

"'Adrift In The Mainstream' is about the Et Cetera among us — the successes they achieve, and the failures they endure. The series concerns a huge minority population that has experienced as much historic injustice and prejudice as any racial, ethnic or religious group. At the same time the Emancipation Proclamation theoretically set African Americans free, members of this other group were being chained to walls in institutions unfit for dogs, without public protest, due process, or hope. And there they stayed, condemned by a society that thought it was doing them a favor by not killing them at birth. Though conditions have improved immeasurably in the past fifty years, just a few decades ago the sister of a future President of the United States was lobotomized at her father's insistence because she was becoming "unmanageable." For the developmentally disabled, there are still a lot of walls and chains." But what has the public seen recently of this minority group? How has their diversity been presented in popular media? In "Forrest Gump," innocuous simpleton Tom Hanks charms everyone, including President Kennedy — brother of the lobotomized young woman — and succeeds at everything he does. In "Dumb and Dumber," Jim Carey and Jeff Daniels make millions for their studio playing slap-happy cretins. Developmentally deprived Jodie Foster in 'Nell' brings new spiritual meaning to the lives of her caregivers, while autistic Dustin Hoffman in "Rainman" has the unique ability to win big in Las Vegas. On television, one of the most famous Seinfeld shows was an episode in which Kramer, mistaken for a retarded man because he's wearing ridiculous clothes and drooling, becomes the honored guest at a prestigious banquet. What these presentations have in common isn't just that major characters are developmentally disabled adults who overcome challenges to achieve spectacular victories. It is that to varying degrees they are all condescending, insensitive fantasies, either glamorizing the retarded, trivializing them, or turning them into the worst kind of cheap comic relief — intellectually challenged Amos and Andys. "Idiots are hot right now," a film producer recently said, as millions of children come out of "Forrest Gump," wishing they were lucky enough to be just like the title character, smiling benignly through a chocolate box life. Imagine their surprise when first confronted by a real developmentally disabled adult, who isn't necessarily charming or lovable, and doesn't do tricks."

And as far as the organization that funds public television programs? I was told they were thinking of "real" minorities; that a select panel liked my proposal but they weren't ready to let anybody else up to the trough just yet. I pointed out that the first group Hitler rounded up was the retarded, then the Gypsies, then the Jews, but they said when they got around to doing a Request for Proposals for programs about the retarded, I was more than welcome to re-apply. That was six years ago, and I'm still waiting.

I hope I'm preaching to the choir. There can't be many of us parents who think society is doing too much for our kids, that they're getting the respect and the resources they deserve. But the lesson is, we must face reality. The real minority people we care about will never have power. They will never have in their membership a Senator, Congress member, Mayor, Governor, CEO, or big name movie star. We've got no Eddie Murphys, no Chastity Bonos, no world famous dance companies, rock bands or authors. There are no CDs of 'Retarded Music," no Autistic History Month, no Special Ed Pride Parade. Although there are some wonderful organizations that make pockets of the habitat friendlier, we will always depend on the largesse of a community that wonders why our children are alive in the first place, and out among them in the second. All we have is each other, and I would be pleased as punch to be proved wrong. So we sure as hell better stick together...

More than anything else I've learned in the last 18 years, I've learned not to feel guilty about a lot of things. I don't feel guilty that there are times when I just want to get away from Ned for a while. I don't feel guilty that I let him watch the Disney Channel four hours a day, or play video games, as long as he's also reading or playing his guitar some of the other time. I don't feel guilty that he's eaten those damned hotdogs for so many mornings, and never voluntarily drunk a glass of water, that he has to have a straw. Essentially, I don't feel guilty that I've let him be awesomely stubborn about so much of the trivia of his life, because that may be all he can ever control, and he might as well learn how to do it now, and enjoy it now.

Finally, I feel guilty that I haven't taken enough chances with him, that I've underestimated his ability to learn, to enjoy, to comprehend. For the past ten years I've been writing a play about a developmentally disabled nineteen year old, and his fifteen year old brother. It's called "He Canters When He Can," and when I'm going to work on it, I often listen to particular a song first. Like my son Ned, I'm a sucker for the emotional impact of some music. The song is called "The Rose" — it was recorded once by Bette Midler as the title song for an otherwise forgettable movie — and it covers the way I think I should approach helping Ned find his happiness. It's about empowerment, and taking chances. It ends this way, and at least for today, so do I.

It's the heart afraid of breaking, that never learns to dance,
It's the dream afraid of waking, that never takes the chance,
It's the one who won't be taken, who cannot seem to live,
and the soul afraid of dying, that never learns to live.
When the night has been too lonely, and the road has been too long,
and you think that love is only for the lucky and the strong,
just remember, in the winter, far beneath the bitter snows,
lies the seed that with the sun's love, in the spring, becomes the rose.