March 2008 Issue

The Riverbend Down Syndrome Association is a 501(c)(3) non-profit organization and can receive tax deductible contributions. Our Employer Identification Number is: 14-1982424.

The 2nd Annual Scotch Doubles Down Syndrome Awareness Bowling Tournament was a huge success once again. The tournament was on October 20, 2007 and proceeds of a little over $6,000 were donated to the Riverbend Down Syndrome Association. We had a great turnout with only a few lanes open each session. Lots of door prizes to give away and some great baskets to raffle off, and a 50/50 drawing. A silent auction was included this year, which included an autographed baseball by Jason Isringhausen of the Cardinals, six treatments of lawn care, and five reams of carpet, among others. It was a fun time and for a great cause.
My goal next time is to pull in more money and have all the lanes filled. However, I would like to have more parents involved and get to know each other and have the children and siblings meet.
The date has not been set yet for the 3rd Annual but watch for an announcement in future newsletters. I would love to have more families come and enjoy in the fun!

Thank you,
Eric, Joy, Katie and Emily Stemmler, E-mail:

Emmanuel Bishop, Cassie Scott and Katie Stemmler with the signed baseball from Jason Isringhausen.
Emmanuel Bishop, Cassie Scott and Katie Stemmler with the signed baseball from Jason Isringhausen.

Katie with Marti Pluester, who won the 50/50 raffle and donated it back!
Katie with Marti Pluester, who won the 50/50 raffle and donated it back!

Egypt and Alligators by Sue Brown, E-mail:

Did you know that mummies "live" in Egypt in pyramids that were built by hand? Do you know how to spell alligator? My 11-year-old daughter recently shared these and other facts with me. So what is the big deal, you ask? My daughter has Down syndrome and mild autism. You can only imagine my tears of pride when she told me her phone number, followed with "So what you think of that?!"
My daughter Karrie, her teacher, and I have all worked hard to bring Karrie to this point. The learning situation became even more poignant after I worked briefly in a group home/residential facility for adults with developmental delays. I work in Occupational Therapy. Several of my patients in this home have Down syndrome. Most all have not had the benefits that our children with Down syndrome of today have had... early intervention services, therapy at school, inclusionary practices in life in general. These are mostly adults who had/have parents who love them, but believed the "experts" who told them to never expect anything from their child.
moonlight is the newsletter of the Riverbend Down Syndrome Association.

Editor: Victor Bishop
Web Site:

I was driving to work this morning, thinking with pride of how excited Karrie is to learn about Egypt. I was planning on a stop by the library to find books to reinforce what she is learning in school. I had a sudden flash to a day not too long ago, when I saw one of the adult males with Down syndrome at the home where I was working. He was sitting in a wheelchair in a hallway. He was listlessly picking at threads on his pants. He sat there, lined up against the wall with the older people... just sitting, waiting.
Most of us have worked very hard to encourage our child with Down syndrome to learn and to become as independent as possible. We have researched medical issues. We have agonized over IEP goals. We have spent sleepless nights checking and rechecking regulations to ensure our child's rights are protected. Most of all, we have believed in the simple fact that our child can learn, albeit more slowly sometimes. We have nurtured the love of learning in our child. So when our child with Down syndrome turns 22, what happens next? Does this child have what has been termed a "tag-along" life, doing what the parents do, simply because that is all that is available? Does this young adult attend a day program where they spend the day with caregivers, making crafts, coloring, assembling puzzles? Does this young person work in a sheltered workshop where there is very little to no challenge, or more importantly, no opportunity for continuation of the learning process? What about socialization opportunities? What about the dignity of being a contributing member of society?
Have we, as parents, dedicated so much of our hearts and lives to have our young adult with Down syndrome end up like John, the adult man with Down syndrome I spoke of earlier? John, who waits in the hallway, picking at threads..., waiting..., waiting, and not learning about Egypt and alligators?

Local Events

Participants Needed for Down Syndrome Study. Eisai and Pfizer are currently sponsoring a clinical research study to find out whether an investigational study drug (donepezil HCL) will benefit children with cognitive impairment associated with Down syndrome. The study takes place at St. Louis Children's Hospital and the Washington University School of Medicine.
If someone between the ages of 10 and 17 with Down syndrome, residing in the community with a caregiver, and have no unstable health and are interested in participating in this clinical research study, please contact Dr. Dorothy K. Grange or Alison Morrison, CPNP, E-mail: at (314) 454-6093; Fax: (314) 454-2075.

May 12th 6:30 - 8:30 p.m. Pride of Illinois Cheerleading Special Needs Team Open House. Meet Our Super Stars, 2008-09 Season Sign-Ups. Come learn more about our program and staff. Contact: Diane Tye, E-mail: 5300 Horseshoe Lake Road, Collinsville, IL. (618) 345-2555.

May 12-16. Lose the Training Wheels™ Southern Illinois University Edwardsville. The class title is, "Practicum in Adapted Physical Activity." Because children are still in the area schools, we are offering only a limited number of hands-on sessions with children in late afternoon and possibly into the early evening. The professor in charge is Dr. Tammy Burt, E-mail:

June 9-13. Lose the Training Wheels™ sponsored by the Down Syndrome Association of Greater St. Louis. Contact: Jeffrey Pomranka, E-mail:

Friday September 26. Puttin' for Down Syndrome, 4th Annual Charity Golf Tournament and Silent Auction. Clinton Hill Golf Course, 3700 Old Collinsville Road, Swansea IL, 62226, (618) 277-3700. Golf clinic for individuals with Down syndrome will be held from 3-4 p.m. Proceeds benefit St. Louis Children's Hospital Down Syndrome Clinic and the Down Syndrome Association of Greater St. Louis. For information or to register call Tim Nienhaus (618) 236-1850, (618) 799-8515 or

Down Syndrome Articles

Prevention of obesity for children with Down syndrome by Mimi Kaufman, M.P.H., R.D., L.D. Nutritionist, Children with Special Health Care Needs. Texas WIC News, June/July 2005, Vol. 14, No. 2, p. 12-3. Reprinted with permission of the Texas Department of State Health Services.

A variety of factors put people with Down syndrome (DS) at risk of increased weight and obesity (Table 1). As with everyone, the balance between food intake and physical activity can prevent or reduce obesity.

Physical factors
Virtually all infants with DS have decreased muscle tone (hypotonia). Children with low muscle tone tire easily and use movement patterns that use the least energy possible. As children with DS get older and have more therapy, their low muscle tone improves. Enrollment in an Early Childhood Intervention program will provide gross motor therapy and nutrition services for the child with DS at the earliest age.
As a result of their hypotonia, the ligaments along the vertebrae in the neck area are more relaxed in some children with DS. This results in an instability that may increase their risk for spinal-cord injury. Any activities that cause or require significant flexing of the neck should be avoided.
Hypothyroidism is the most common endocrine problem in DS. It is seen in approximately 10 percent of infants and goes up to 50 percent in adults with DS. Inadequate thyroid function contributes to a low metabolic rate that can cause an increase in weight gain.

Infants with DS are generally lighter and shorter than other infants at birth. As they grow, the following differences are seen on growth charts when compared with typically developing children: Children with DS who also have moderate to severe congenital heart defects are also lighter and shorter than those with mild defects. Plotting both mean weight and BMI on growth charts shows that children with Down syndrome tend to be overweight beginning in late infancy and continuing through their growing years.

Table 1. Risk factors for overweight and obesity in Down syndrome
Risk factors Result in
Short stature
Low resting metabolic rate
Decreased pulmonary function   
Cardiac malformations
Tiring easily
Excessive caloric intake
Preference for indoor activities
Apathy towards physical exercise   
Adapted from Pipes and Powell (1996).

Physical activity
When compared with their siblings, children with DS are typically less active and spend significantly more time indoors. Many times children with special health-care needs are less active because of the family and community's perception that the child is unable to be physically active. Physical activity is important to increase lean body mass and, if needed, to decrease body fat.
All children with DS should be encouraged to participate in physical activity to increase their function, improve fitness, expend energy for weight management, and have fun. Each child's abilities and limitations should be considered when choosing activities. A physical therapist can determine appropriate activities based on the child's motor impairment. For very young children, safe play is an activity. As children get older, simple and safe activities that involve their large muscle groups and expend energy include walking, biking, running, playing at the park, and swimming.

Key points: Wellness and obesity prevention in children with Down syndrome
Support families of children with Down syndrome by providing: Adapted from Feucht and Lucas (2000).

Feucht, S., and B. Lucas. 2000. Weight management in children with special health care needs. Nutrition Focus 15(1): 1-6. Pipes, P., and J. Powell. 1996. Preventing obesity in children with special health care needs. Nutrition Focus 11(6): 1-8. Vehrs, P. 1997. Physical activity and exercise for children with special health care needs. Nutrition Focus 12(2): 1-8.

National Down Syndrome Society. Available online at: <>.
Guthrie Medlen, Joan E. 2002. The Down syndrome nutrition handbook: A guide to promoting healthy lifestyles. Bethesda, MD: Woodbine House Special Needs Collection.

A pint-sized ambassador against misinformation by Beverly Beckham, E-mail: The Boston Globe. March 2, 2008. Reprinted with the permission of the author. © Copyright 2008 Globe Newspaper Company.

This is what "internationally renowned" Sherman J. Silber, M.D., writes in his "completely revised and updated" book "How to Get Pregnant," published by Little Brown and Co. last August: "The biggest fear of most pregnant women is that their child will be abnormal, and the most common abnormality they worry about is Down syndrome.... These children are severely retarded mentally, and they usually die before their thirtieth birthday."

He also writes: "We can prevent couples from having to face the horror of giving birth to children with otherwise devastating genetic defects such as Down syndrome, cystic fibrosis, muscular dystrophy, mental retardation, etc., that terrify every woman who ever gets pregnant."

Silber's book has sold more than 400,000 copies. It's been translated into Spanish, German, and Russian. He's been on "Oprah," "Good Morning America," and NPR.

Silber may be popular, but he is wrong.

"Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Some are so mildly affected that they live independently and are gainfully employed," says the National Institutes of Health, the federal agency that speaks with authority on this issue.

"Most of the health problems associated with Down syndrome can be treated, and life expectancy is now about 55 years," says the March of Dimes.

And giving birth to a child with Down syndrome or cystic fibrosis or muscular dystrophy or mental retardation is not a "horror." Not according to every woman I know who has given birth to a child with these disabilities.

It takes a long time to alter public perception, to dispel these untruths. I know. My granddaughter has Down syndrome.

"This is Lucy," I say to someone new and Lucy smiles, or doesn't, because she is 4 and 4-year-olds can be sweet or they can be indifferent and stare at the floor.

But mostly she is sweet and says "Hi" before bolting across a room to wherever she wants to be. Mostly she makes a good impression. And this is important because Lucy may be the only child with Down syndrome this person ever meets.

Lucy doesn't know that she's an ambassador. She doesn't know that how she acts may determine what a person thinks of other people with Down syndrome. She doesn't know that she's up against misinformation and fear.

Lucy frightens no one. She's a pretty girl with light brown hair pulled into two pony tails, sparkling green eyes, and a knack for leaving people who meet her not sorry and sad, but happy.

Amy, my friend Anne's daughter, was the same way. She had cystic fibrosis. She lived for 11 years. Too short a time. But a good time, a beloved time, not a horror.

Efforts to change the way people think about kids with disabilities are slow going because there are not enough Lucys telling the world that they're OK. Lucy is not on "Oprah." Lucy is not an "expert."

But the truth is that Lucy shows people that Down syndrome is not the end of the world.

This truth is in books, too, and in movies and blogs and in other people with Down syndrome. But who in the general population would hunt down "Praying with Lior," a documentary about a 13-year-old boy with Down syndrome who loves to pray? Who would read "Gifts," a collection of stories written by mothers of children with Down syndrome? Who would watch "Down Syndrome - The First 18 months," an educational video put out by Woodbine House?

Who will read blogs about Down syndrome just to learn?

Only people who have reason to learn. The rest of the world learns as they go, believing the facts that some "expert" gets wrong. So misinformation lives and old beliefs endure and negativity reigns.

On paper, kids with disabilities do not make a good impression. On paper, Lucy is all negatives. Low muscle tone. Speech delayed. Cognitive impairment. Slow to walk, to learn, to grow. Even her almond-shaped eyes are a negative, though God knows why. They are beautiful, like her mother's, bright and full of wonder.

But in person? Lucy charms.

In person, Lucy is just a person, 4 years old, saying her hellos, then racing away to discover the world.

Can I Marry You? By Pat Ferguson Hanson. Special Times, Vol. 22, No. 6, November/December 2007, page 7 & 9. Reprinted with the permission of the author.

It came out of the blue. I wasn't expecting it at all. It's not the sort of question one prepares for. I'd had my share of proposals as a young woman. But I'm almost 58 and 22 years married. I just never expected my daughter to ask, "Mom will you marry me?"

"Where do babies come from?", maybe. But "Will you marry me?," never. Molly proposed to me while we were taking a drive in the country last night with her Dad. She's fifteen now but she's developmentally delayed; she has Down syndrome.

"Do you wanted to get married, Molly?" I asked, avoiding her question.

"Yes," she said.

Maya, Tina and Molly

"That's nice; marriage is a good thing," I said, not at all sure it would be in her case. Wouldn't she be in danger of losing her Social Security and other benefits if she married?

She didn't let me off the hook. "You marry me, Mom?"

"No, Molly, I can't marry you. I'm already married to Daddy.

But you'll always have a place with us," I said, nearly choking on my words, since Jim and I had placed Molly in foster care weekdays when she was five years old. We were all as used to that situation by now as one ever becomes.

Where was this new question coming from? Was it because Molly's older sister Tina was leaving for college in a few weeks? Was it because I was leaving for a month in Bolivia the next day? Was it because Molly's foster sister, Jenna, was having a baby soon and setting up house with the baby's father? Who knows? But I truly wasn't prepared. How do you prepare for this kind of question? What was Molly really asking: who she'll live with when her sisters have all left home?

Jim didn't seem to be tracking this conversation, even though he was in the front seat right next to me. I was prepared to cut him some slack because he was the driver. But I wasn't prepared to leave him out of this monumental conversation entirely.

"Did you just hear Molly ask if I'd marry her?"

"She probably said 'bury'," he replied.

"Geez, Him, I don't think so," I said.

Molly clarified things with her next questions: "I marry Maya?" (Maya is our middle child, a year older than Molly. Tina and Maya were adopted from Honduras.)

"No, Molly," I said. "Usually girls marry boys, but both Maya and Tina have said they want you to live with them when you grow up. So, yes, you may end up living with Maya."

"Okay," she said, seemingly satisfied for the moment.

"Wherever we are, Molly, there will always be a place for you," I said, not at all sure what that "place" might be - a foster home, group home, or a church-run residential living facility, with one of us family members remaining her guardian?

"Thanks, Mom. I love you SO much," said Molly.

"I love you, too, Molly," I responded. "I love you, too."

Arthur Miller's Missing Act by Suzanna Andrews, Contributing Editor, Vanity Fair. September 2007. Reprinted with the permission of the author.

For all the public drama of Arthur Miller's career — his celebrated plays (including Death of a Salesman and The Crucible), his marriage to Marilyn Monroe, his social activism — one character was absent: the Down-syndrome child he deleted from his life.

No photograph of him has ever been published, but those who know Daniel Miller say that he resembles his father. Some say it's the nose, others the mischievous glimmer in the eyes when he smiles, but the most telling feature, the one that clearly identifies him as Arthur Miller's son, is his high forehead and identically receding hairline. He is almost 41 now, but it's impossible to say whether his father's friends would notice the resemblance, because the few who have ever seen Daniel have not laid eyes on him since he was a week old. When his father died, in February 2005, he was not at the funeral that took place near Arthur Miller's home, in Roxbury, Connecticut. Nor was he at the public memorial service that May, at Broadway's Majestic Theatre, where hundreds of admirers gathered to pay homage to his father, who was, if not the greatest American playwright of the last century, then certainly the most famous. In the days after his death, at the age of 89, Arthur Miller was eulogized around the world. Newspaper obituaries and television commentators hailed his work — including those keystones of the American canon Death of a Salesman and The Crucible — and recalled his many moments in the public eye: his marriage to Marilyn Monroe; his courageous refusal, in 1956, to "name names" before the House Un-American Activities Committee; his eloquent and active opposition to the Vietnam War; his work, as the international president of PEN, on behalf of oppressed writers around the world. The Denver Post called him "the moralist of the past American century," and The New York Times extolled his "fierce belief in man's responsibility to his fellow man — and [in] the self-destruction that followed on his betrayal of that responsibility."

In a moving speech at the Majestic, the playwright Tony Kushner said Miller had possessed the "curse of empathy." Edward Albee said that Miller had held up a mirror and told society, "Here is how you behave." Among the many other speakers were Miller's sister, the actress Joan Copeland, his son the producer Robert Miller, his daughter the writer and film director Rebecca Miller, and her husband, the actor Daniel Day-Lewis. Miller's oldest child, Jane Doyle, was in the audience but did not speak.

Only a handful of people in the theater knew that Miller had a fourth child. Those who did said nothing, out of respect for his wishes, because, for nearly four decades, Miller had never publicly acknowledged the existence of Daniel.

He did not mention him once in the scores of speeches and press interviews he gave over the years. He also never referred to him in his 1987 memoir, Timebends. In 2002, Daniel was left out of the New York Times obituary for Miller's wife, the photographer Inge Morath, who was Daniel's mother. A brief account of his birth appeared in a 2003 biography of Miller by the theater critic Martin Gottfried. But even then Miller maintained his silence. At his death, the only major American newspaper to mention Daniel in its obituary was the Los Angeles Times, which said, "Miller had another son, Daniel, who was diagnosed with Down syndrome shortly after his birth in 1962. It is not known whether he survives his father." Citing the Gottfried biography, the paper reported that Daniel had been put in an institution, where Miller "apparently never visited him."

Miller's friends say they never understood exactly what happened with Daniel, but the few details they heard were disturbing. Miller had not only erased his son from the public record; he had also cut him out of his private life, institutionalizing him at birth, refusing to see him or speak about him, virtually abandoning him. The whole matter was "absolutely appalling," says one of Miller's friends, and yet everyone probably would have kept silent had it not been for the rumor that began to spread earlier this year, passing from Roxbury to New York City and back. Although no one was sure of the facts, the story was that Miller had died without leaving a will. Officials had gone looking for Miller's heirs, and they had found Daniel. Then, the rumor went, the state of Connecticut had made Arthur Miller's estate pay Daniel a full quarter of his father's assets, an amount that was believed to be in the millions of dollars.

For some of Miller's friends, the possibility that Daniel had been given his fair share brought a measure of relief that, finally, a wrong had been righted. Attention had been paid. The feeling was shared by the social workers and disability-rights advocates who have known and cared for Daniel over the years as it became clear that he had indeed gotten a share of the Miller estate. "An extraordinary man," "very beloved by a lot of people," Daniel Miller, they say, is a "guy who's made a difference in a lot of lives." They also say he is someone who, considering the challenges of his life, has in his own way achieved as much as his father did. The way Arthur Miller treated him baffles some people and angers others. But the question asked by friends of the father and of the son is the same: How could a man who, in the words of one close friend of Miller's, "had such a great world reputation for morality and pursuing justice do something like this"?

What none of them considered was the possibility that Arthur Miller had left a will and that, six weeks before he died, he was the one who, against common legal advice, made Daniel a full and direct heir — an equal to his three other children.

The Power of Denial

In all the public references to Daniel, which appear to be based on Martin Gottfried's biography, his birth is said to have taken place in 1962. As friends remember it, however, he was born in November 1966. Arthur Miller had just turned 51, and he had already written his two best-known plays, Death of a Salesman, which won the Pulitzer Prize in 1949, and The Crucible, which was produced in 1953. Although he did not know it, his best work was behind him. In 1966 he was dealing with the fallout from his most controversial play, After the Fall, a thinly disguised account of his troubled marriage to Marilyn Monroe. Produced in 1964, two years after Monroe's suicide, and greeted with some disgust by critics and the public, it was widely viewed as an attempt by Miller to cash in on her fame. The public outcry had left Miller angry and wounded, and professing not to understand how anyone could have thought that the play was based on Monroe. "There is no better key to Arthur's personality," says a woman who was a close friend of Miller's wife, than "his refusal to acknowledge that people who knew After the Fall, and who loved Marilyn, would be offended. Like all of us, he had powerful powers of denial."

Monroe and Miller had divorced in 1961. A year later, Miller married his third wife, Inge Morath. She was an Austrian-born photojournalist who had studied with Henri Cartier-Bresson and had worked for Magnum, the international photo agency. She met Miller in 1960, on the set of the film The Misfits. Miller had written the screenplay for Monroe, whose erratic behavior almost kept the film from being made. Morath's photographs of Monroe, fragile and well into her struggle with alcohol and barbiturates, would be among the most emotionally intimate pictures taken of the doomed star.

Intelligent and seemingly fearless, Morath had been forced to work in an airplane factory in Berlin during the Second World War, for refusing to join the Nazi Party. After one bombing raid, she ran through the streets of the shattered city holding a bouquet of lilacs over her head. When the war ended, Morath made her way back to her home in Austria on foot. "Everyone was dead, or half dead," she once told The New York Times. "I walked by dead horses, by women with dead babies in their arms." After that, she decided never to photograph war. "Arthur always thought of her as a heroic creature, and she was," says Joan Copeland. "Everything had to be perfect that she touched, and did. And it was perfect, if she involved herself in it."

Arthur and Inge's first child, Rebecca, was born in September 1962, seven months after they were married. From the first, her parents "absolutely doted on her," friends recall. She was, says one, "the precious object. She was stunningly beautiful. Arthur and Inge were not really beautiful people, but they produced this exquisite daughter." Wherever Arthur and Inge went, they took Rebecca — on their trips around the world and to dinner parties hosted by Roxbury friends such as the artist Alexander Calder and the novelist William Styron and his wife, Rose. After Rebecca arrived, it seemed to some friends that Jane and Robert, Miller's children from his first marriage, to Mary Slattery, "were almost never in the picture." Miller loved his older children, his sister says, "but Rebecca was special."

Daniel was born four years later, in a New York City hospital. The Broadway producer Robert Whitehead, who died in 2002, would tell Martin Gottfried that Miller called him on the day of the birth. Miller was "overjoyed," Whitehead said, and confided that he and Inge were planning to name the boy "Eugene" — possibly after Eugene O'Neill, whose play Long Day's Journey into Night, which had won the Pulitzer in 1957, had awed Miller. The next day, however, Miller called Whitehead again and told him the baby "isn't right." The doctors had diagnosed the infant with Down syndrome. Born with an extra 21st chromosome, children with Down syndrome are often recognized by their upward-slanted eyes and flattened facial features. They suffer from hypotonia –decreased muscle tone– and mild to moderate retardation. Many are born with heart problems, and in 1966 they were not expected to live past the age of 20.

"Arthur was terribly shaken — he used the term 'mongoloid,'" Whitehead recalled. He said, "'I'm going to have to put the baby away.'" A friend of Inge's recalls visiting her at home, in Roxbury, about a week later. "I was sitting at the bottom of the bed, and Inge was propped up, and my memory is that she was holding the baby and she was very, very unhappy," she says. "Inge wanted to keep the baby, but Arthur wasn't going to let her keep him." Inge, this friend recalls, "said that Arthur felt it would be very hard for Rebecca, and for the household," to raise Daniel at home. Another friend remembers that "it was a decision that had Rebecca at the center."

Within days, the child was gone, placed in a home for infants in New York City. When he was about two or three, one friend recalls, Inge tried to bring him home, but Arthur would not have it. Daniel was about four when he was placed at the Southbury Training School. Then one of two Connecticut institutions for the mentally retarded, Southbury was just a 10-minute drive from Roxbury, along shaded country roads. "Inge told me that she went to see him almost every Sunday, and that [Arthur] never wanted to see him," recalls the writer Francine du Plessix Gray. Once he was placed in Southbury, many friends heard nothing more about Daniel. "After a certain period," one friend says, "he was not mentioned at all."

Life in the Wards

Marcie Roth remembers seeing Daniel for the first time when he was about "eight or nine." Now the director of the National Spinal Cord Injury Association, Roth worked at Southbury during the 1970s. "Danny was a neat, neat kid," she says, "a very friendly, happy guy." Although there were close to 300 children at Southbury at the time, everyone, she says, knew Danny Miller. This was partly because they knew who his father was and partly because Daniel "was among the more able of the young children with Down syndrome," Roth says. But mainly it was because of Daniel's personality. "He had a great spirit about him," she says. This was no small achievement, because, according to Roth, "Southbury Training School was not a place you would want your dog to live."

When it opened, in 1940, Southbury was considered one of the best institutions of its kind. Set on 1,600 acres in the rolling hills of central Connecticut, it was magnificent to behold, with porticoed, neo-Georgian red-brick buildings surrounded by endless lawns. It had a school and job-training programs, and its residents were housed in "cottages" — with their own living areas and kitchens. Well into the 1950s, Southbury was so highly regarded that wealthy families in New York City would buy country homes in Connecticut to establish residency so that, for a minimal fee, they could place their children there.

By the early 1970s, however, around the time Arthur Miller put his son there, Southbury was understaffed and overcrowded. It had nearly 2,300 residents, including children, living in rooms with 30 to 40 beds. Many of the children wore diapers, because there weren't enough employees to toilet-train them. During the day, they sat in front of blaring TVs tuned to whatever show the staff wanted to watch. The most disabled children were left lying on mats on the floor, sometimes covered with nothing but a sheet. "In the wards you had people screaming, banging their heads against the wall, and taking their clothes off," says David Shaw, a leading Connecticut disability lawyer. "It was awful."

Toni Richardson, the former Connecticut commissioner for mental retardation, who worked at Southbury during the 1970s, recalls that in those days restraints were still used on children who were considered "rambunctious": the strips of cloth used to tie them to chairs or door handles were called "belly bands"; there was also something that "looked like a straitjacket, except that it was made of cotton."

The number of children admitted to Southbury began to taper off in the mid-70s. With federal legislation mandating public education for children regardless of disability, there were more educational opportunities outside institutions such as Southbury. There was also a growing realization among medical and psychiatric experts that children needed to be raised at home. But for those children who remained at Southbury, life did not get easier. Some children never had any visitors. Their parents put them in Southbury and never saw them again. Other parents, like Inge Morath, were dedicated visitors. "They came like clockwork, every visiting Sunday," says Richardson, who wonders how many of them were fully aware of the conditions in which their children were living. "If you were a parent who had left your child in that situation, would you ever want to admit that Southbury was like that? How could you live with yourself? You had to tell yourself it was all right." Inge, however, appears to have seen things more clearly. After a Sunday visit to Southbury, du Plessix Gray recalls, Inge said, "'You know, I go in there and it's like a Hieronymus Bosch painting.' That was the image she gave."

In After the Fall, the character based on Inge has a recurring dream. "I dreamed," she says, "I had a child and even in the dream I saw it was my life, and it was an idiot, and I ran away. But it always crept onto my lap again, clutched at my clothes." Miller wrote those lines several years before Daniel's birth, and Joan Copeland says, "That's the first thing I thought of when I found out about Daniel." She believes the dream speech may have been a reference to their cousin Carl Barnett, who also had Down syndrome. Barnett, who was a few years older than Arthur, was the son of his maternal uncle, Harry. At a time when babies with Down syndrome were almost always institutionalized, Barnett was raised at home, and the Miller children saw him often. In Timebends, Miller referred to Barnett as "a helpless mongoloid" whose mother was given to "mocking his fluffy speech to his face" and "flying at him in a rage."

Miller's memories of Carl Barnett may have influenced his decision to institutionalize his son, but he also would have had the support of doctors, who in 1966 were still advising parents to put their children away. "Babies with Down syndrome are absolutely the most adorable children," says Rich Godbout, a social worker who knew Daniel for 10 years. "I can't imagine giving up a child like that, but it happened." Still, by 1966, large numbers of parents of Down-syndrome children were ignoring their doctors' advice and keeping their children at home. It wasn't easy. Even the most intellectually able Down-syndrome child requires a tremendous amount of care and reinforcement.

But there are huge rewards, too, which Arthur Miller seemed not to see. As Joan Copeland remembers it, her cousin Carl was anything but a burden to his family. They "adored him and they spoiled him," especially his two younger sisters, who took care of him throughout his life. "Never, for a minute, did anyone in that family ever think they could live without Carl," says Copeland. There were many things Carl couldn't do, she recalls, but "he wasn't helpless." Although doctors told his parents he probably wouldn't live past the age of 7, he lived to be 66.

"I think Arthur saw, in the Barnett family, how it just played into everything," his sister says, "how the presence of this brother" affected everyone. He also saw the sacrifices that Copeland made in caring for her own son, who was born with cerebral palsy. "I think when he saw the adjustments that had to be made in [our] lives because of [our child], he didn't want to have anything to do with that," she says. Miller, says one friend, may have been afraid — "ashamed" is the word another uses — of the genetic problems in his family. Some believe Miller may have feared losing Inge's attention to a needy child; others suggest that he simply didn't want anything to interfere with his work. All agree that the issue of Daniel was extremely painful for him, and that he did not deal well with emotions. His plays were often acutely psychological-tackling the complicated relationships between fathers and sons, the corrosive effects of guilt and fear, and the price of self-deception — but in his personal life he could be shockingly devoid of emotional understanding. He was not cold, however. Although few people knew it, Miller did visit Daniel at Southbury on rare occasions. That he never acknowledged him as a son, though, is something friends find almost impossible to comprehend or accept. The author Donald Connery, who worked with Miller on the Peter Reilly wrongful-conviction case in the 1970s, says, "I speak with great affection for Arthur, and with admiration for all the good things he did in his life," but whatever led him to institutionalize Daniel "doesn't excuse painting his child out of his life."

"Arthur was detached, that's how he protected himself," says Copeland. "It was as though he thought if he didn't speak about it, it would go away."

"He Really Had Nothing"

In the early 1980s, when he was around 17, Daniel was released from Southbury. According to Jean Bowen, a prominent Connecticut disability-rights advocate, Daniel's social workers and psychologists were eager to get him moved into a group home, but they were afraid that his father would object. Many parents did in those days, fearful for the safety of their children. As bad as the conditions were in many state institutions, they offered parents the assurance that their children would be taken care of for life. Determined to get Daniel out of Southbury, his social worker called Bowen and asked her to put together a report for Miller.

Bowen recalls the first time she met Daniel: "He was just a delight, eager, happy, outgoing — in those days even more so than now, because of his isolation." He showed her his room, which he shared with 20 other people, and his dresser, which was nearly empty, because everyone wore communal clothing. "I remember very clearly trying to respond with happiness, but it was very hard, because there was nothing there," she says. "He really had nothing. His sole possession was this little tiny transistor radio with earplugs. It was something you'd pick up at a five-and-dime. And he was so proud to have it. You couldn't help but think, This is Arthur Miller's son? How could this be?" Bowen wrote up her report, and then the staff met with Daniel's parents. The result stunned everyone. "I was told that the meeting went beautifully," says Bowen. "Miller didn't say much but ultimately did not object." Daniel was free to go, and "for that he owes his father a great thank-you," she says. "There are so many people left at Southbury whose parents won't let them go. So he couldn't connect with his child emotionally, for whatever reasons, but he didn't hold him back. He let him go."

In 1985, the U.S. Department of Justice sued Connecticut over the poor conditions at Southbury. The following year it ordered the state to close Southbury to new admissions. By then, Daniel was living in a group home with five housemates, and making huge strides. He had a lot to learn — how to live on his own, how to use public transportation, how to shop for groceries.

Experts say it is difficult to measure how much Daniel had been held back by years of living in an institution. Early-intervention programs, nurturing families, and special-education classes — all of which Daniel missed out on — have contributed to a 15-point rise in the I.Q. scores of Down-syndrome children in the last 30 years, says Stephen Greenspan, a professor of psychiatry and former president of the Academy on Mental Retardation. Today, many higher-functioning Down-syndrome children can read and write; some graduate from high school and even college. Chris Burke, the actor with Down syndrome, who played Corky on the television show Life Goes On, lives in his own apartment in New York and commutes to work. Daniel, by contrast, had to learn basic reading skills. He had to work on his speech, and people say it is still difficult to understand him unless you know him.

Even so, Daniel didn't seem to be scarred by his years at Southbury, according to one of his social workers. He had none of the odd behavioral tics or bouts of severe depression that afflict many people who have been raised in institutions. "He was amazingly well adjusted," the social worker says.

Daniel was still in a group home when his father's memoir, Timebends, was published, in 1987. In his account of 1966, Miller wrote that he felt "uplifted by what was clearly a new life being born around me" — referring not to the birth of his son that year but to the expansion of PEN. There are hints in Timebends that Miller was struggling with his guilt about Daniel. He wrote at length about his own father's abandonment by his parents, and said that Marilyn Monroe, who was raised in a foster home, taught him to spot an orphan in a crowded room, to recognize in his or her eyes "the bottomless loneliness that no parented person can really know." He repeatedly addressed the subject of denial. "Man is what man is," he wrote, "nature's denial machine." There were those who read his memoir and sensed that he was trying to tell the truth, without saying it out loud. It was "as if he wanted to be outed," says one friend.

A Public Encounter

By the mid-90s, Daniel was doing so well that he was enrolled in a state-financed "supported-living program" that enabled him to stay in an apartment with a roommate. He still had someone looking in on him once a day, helping him to pay bills and sometimes to cook, but otherwise he was on his own. He had a bank account and a job, first at a local gym and then at a supermarket. He went to parties and concerts, and he loved to go out dancing. He was also a "natural athlete," says one social worker. He learned to ski, and competed in the Special Olympics, in that sport as well as in cycling, track, and bowling. "Everyone loved Danny," says Rich Godbout, who ran the supported living program. "His greatest joy was helping people. He would insist. If someone needed help moving, Danny was always the first guy to volunteer to help." Daniel also joined Starlight and People First, two "self-advocacy" groups that promote the rights of disabled people to govern their own lives. "He wouldn't miss a meeting," says Godbout. In 1993, Daniel attended a ceremony to celebrate the closing of the Mansfield Training School, Southbury's sister institution. Three years later, Southbury came under a federal contempt order, and the question of whether it should be closed became the subject of a fiery political debate that continues today. Jean Bowen, an adviser to People First, remembers hearing Daniel speak out at meetings about his desire to see the institution shut down.

In September 1995, Daniel and Arthur Miller met for the first time in public, at a conference on false confessions in Hartford, Connecticut. Miller had come to the Aetna conference center to deliver a speech on behalf of Richard Lapointe, a man with a mild intellectual disability who had been convicted, based on a confession that many people believed was coerced, of murdering his wife's grandmother. Daniel was there with a large group from People First. Miller, several participants recall, seemed stunned when Danny ran over and embraced him, but recovered quickly. "He gave Danny a big hug," says one man. "He was very nice." They had their picture taken together, and then Miller left. "Danny was thrilled," Bowen recalls.

The following year, Rebecca Miller married Daniel Day-Lewis, whom she had met on the set of the movie adaptation of The Crucible. Day-Lewis, says Francine du Plessix Gray, "was the most compassionate about Daniel. He always visited him, with Inge and Rebecca." Some say he was "appalled" at Miller's attitude toward his son, and it is possible that Day-Lewis influenced Miller to make his first appearance, sometime in the late 1990s, at one of Daniel's annual "overall plan of service" reviews. The meeting was held in Daniel's apartment and lasted about two hours, Godbout recalls. As Arthur and Inge listened, the social workers who worked with Daniel discussed his progress — his job, his self-advocacy work, his huge network of friends. Miller "was just blown away," Godbout recalls. "He was absolutely amazed at Danny being able to live out on his own. He said it over and over again: 'I would never have dreamed this for my son. If you would have told me when he first started out that he would get to this point, I would never have believed it.' And you could see his sense of pride. Danny was right there, and he was just beaming."

Miller never went to another meeting, and he apparently did not visit Daniel again at his apartment. But every now and then a social worker would drive Daniel to New York City to see his parents.

It was around this time, one close friend says, that Miller told a guest at a dinner party that he had a son with Down syndrome. The guest was a total stranger, "someone Arthur would never see again," but his friends were amazed all the same. Miller had still not spoken about Daniel in public or to any of them, but he seemed to be wrestling with things. He began to ask his sister about her son, wanting to know if he could read and write. The questions "astonished" her, because Miller should have known the answers. Her son had worked in the mailroom of a company for 17 years by then. But it gave Copeland an opening to ask about Daniel, whom she had never met. "I asked him, 'Does he know you?' And he said, 'Well, he knows I'm a person, and he knows my name, but he doesn't understand what it means to be a son.'"

By then, one social worker says, Daniel did not really think of Arthur and Inge as his parents. The people who played that role in his life were an older couple who had met Daniel after his release from Southbury. "They were the ones you called when Danny needed anything," says the social worker. "Money, anything — and you'd get it. We always assumed it came from the Millers, but they weren't the ones you talked to." Daniel spent holidays with the couple. Inge would visit, sometimes with Rebecca, and then return home to Roxbury to celebrate with friends and the rest of the Miller family. On Christmas of 2001, after years of noticing that Inge would disappear for several hours on weekends, Copeland finally asked where she was going. "To see Danny," Inge said. "Would you like to come?" "I said, 'Oh, yes, I would love to,'" says Copeland. "So I did see him, and I was very, very impressed." Five weeks later, on January 30, 2002, Inge died of cancer at the age of 78. When Miller spoke to The New York Times for her obituary, he appears to have confirmed that she had only one child, Rebecca. When Daniel did not appear at the funeral, friends assumed that Miller's attitude toward his son had not changed.

A Dramatic Gesture

By the spring of 2004, Miller's own health was beginning to fail. He was 88 and lived in the Roxbury farmhouse with his girlfriend, Agnes Barley, a 33-year-old artist he'd met shortly after Inge's death. Miller was also putting the final touches on Finishing the Picture, a play based on the making of The Misfits. In April, a Roxbury neighbor named Joan Stracks, who knew nothing about Daniel, phoned Miller to ask if he would speak at a fund-raiser for the Western Connecticut Association for Human Rights — the disability-rights organization that had helped get Daniel released from Southbury. Miller agreed without hesitating. It's impossible to know if he was considering breaking his silence about Daniel, because in October his office called to cancel. He was battling cancer and pneumonia. Toward the end of the year, he and Barley moved into his sister's apartment, off Central Park. The papers reported that he was receiving hospice care.

Arthur Miller signed his last will on December 30, naming as executors his children Rebecca Miller Day-Lewis, Jane Miller Doyle, and Robert Miller. Daniel was not mentioned in the will, but he was named in separate trust documents that Miller signed that day, which are sealed from public view. In those, according to a letter from Rebecca Miller, Arthur bequeathed "everything left over after taxes and special bequests to his four children. This includes Danny, whose share is no different from mine or my other siblings."

It was a dramatic gesture, and one that almost no attorney would have encouraged. To receive state and federal funding, people with incapacitating disabilities must maintain assets at or below the poverty level. Any amount above that is often claimed by the state to pay for their care. To protect their assets and to get the maximum public funding, most wealthy parents of disabled children leave their inheritances to other relatives or create a "special-needs trust."

By leaving the money directly to Daniel, Miller made him too wealthy to receive government assistance — and left the Miller estate open to being hit up by the state of Connecticut for everything it had spent on Daniel's care over the years. Which is exactly what happened. Shortly after the will was filed, Connecticut's Department of Administrative Services "issued one reimbursement claim to Danny Miller," according to the estate's lawyer, for a "portion of his care when he was a minor." That claim, the attorney says, is now in the process of being settled.

What Arthur Miller's intentions were at the end of his life remain a mystery. Did he ignore his lawyers' advice? In choosing not to establish a special-needs trust, did he want to free Daniel from the limits of government funding, to provide more for him than he would get from public assistance? The only person in a position to answer these questions is Miller's daughter Rebecca, but she refused numerous requests to be interviewed. In response to a lengthy list of questions about her father's decision to institutionalize his son, his relationship with Daniel, and his 39-year effort to keep his son's existence a secret, Rebecca Miller, who also has never spoken publicly about Daniel and would not permit him to be interviewed, wrote: "The only person who can truly answer your questions is my father, and he is dead."

It would be easy to judge Arthur Miller harshly, and some do. For them, he was a hypocrite, a weak and narcissistic man who used the press and the power of his celebrity to perpetuate a cruel lie. But Miller's behavior also raises more complicated questions about the relationship between his life and his art. A writer, used to being in control of narratives, Miller excised a central character who didn't fit the plot of his life as he wanted it to be. Whether he was motivated by shame, selfishness, or fear — or, more likely, all three — Miller's failure to tackle the truth created a hole in the heart of his story. What that cost him as a writer is hard to say now, but he never wrote anything approaching greatness after Daniel's birth. One wonders if, in his relationship with Daniel, Miller was sitting on his greatest unwritten play.

Today, Daniel Miller lives with the elderly couple who have long taken care of him, in a sprawling addition to their home that was built especially for him. He continues to receive daily visits from a state social worker, whom he's known for years. Although his father left him enough money to provide for everything he needs, Daniel has kept his job, which he loves and "is very proud of," according to Rebecca, who visits him with her family on holidays and during the summers. "Danny is very much part of our family," she said, and "leads a very active, happy life, surrounded by people who love him."

Some wonder why Arthur Miller, with all his wealth, waited until death to share it with his son. Had he done so sooner, Daniel could have afforded private care and a good education. But those who know Daniel say that this is not how he would feel. "He doesn't have a bitter bone in his body," says Bowen. The important part of the story, she says, is that Danny transcended his father's failures: "He's made a life for himself; he is deeply valued and very, very loved. What a loss for Arthur Miller that he couldn't see how extraordinary his son is." It was a loss that Arthur Miller may have understood better than he let on. "A character," he wrote in Timebends, "is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remorse."

Web Wanderings

Torment not Treatment: Serbia's Segregation and Abuse of Children and Adults with Disabilities. A report by Mental Disability Rights International. November 14, 2007. URL:

I walked into one room after another, a ward for children 4 to 7 years old. It was the middle of the day and children were confined to their cribs. There was no staff in any of the rooms, no toys, no music - nothing. One boy with Downs Syndrome was hitting his head over and over against the metal crib. Another was tied to the crib in 4-point restraint and still another, with a deep gash on his ear, had his arms tied to the side of the crib - MDRI investigator. [...]

MDRI investigators found this young child with Down's Syndrome, in Subotica Children's Institution, restrained to prevent "self abuse" - a product of mind-numbing boredom and lack of human contact. Photo MDRI 2006.   Rows and rows of neglected children alone in cribs at Kulina. Photo Marc Schneider 2007.
MDRI investigators found this young child with Down's Syndrome, in Subotica Children's Institution, restrained to prevent "self abuse" - a product of mind-numbing boredom and lack of human contact. Photo MDRI 2006. Rows and rows of neglected children alone in cribs at Kulina. Photo Marc Schneider 2007.

One unique characteristic of the population [at the Kulina facility] is that fully one-third is Down's Syndrome, including children as young as 3 years of age. Although this is a frequent cause of mental retardation, it is rare to see more than 5-10 percent of an adult population in congregate care in the West today. When these youngsters are raised in a loving family, most of these individuals can become fully independent for the majority of their adult life. IQ scores from those raised in institutional facilities will fall 40 or 50 points below their home-raised counterparts, not to mention the difference in social skills. When any child is deprived of the attention of loving caretakers, the IQ is invariably affected. [...]

Father's Journal by Dr. E. Duff Wrobbel

For years now — since before my daughter was born — I have been reading this newsletter. Each time, the Father's Journal gets under my skin because I too am a Father, but I have never kept a journal. I wonder if this means I am dealing with my status as a special-needs Dad so much better than other Dads, or if I am just denying my own circumstances? Should I feel proud that on most days, I do not feel the sorts of struggles that need to be worked out on paper, or am I failing to connect with my daughter? Am I failing my daughter? I would ask her, but this is not yet a question she could understand, much less answer.
The Father's Journal haunts me, and I wonder what this means.
In the first unit we visited, there were about 25-30 youngsters. Two children were restrained in poorly fitting wheelchairs. The staff told us that these youngsters would engage in "self-aggression" if they were released. The first of these two was a very pretty 7-year-old who was very thin. She had the vacant eyes of a child who has never been nurtured and eventually disengages from human interaction. She did not respond in anyway to my attempts to engage her. When I released her arms and legs from the restraints, she merely tried to hit herself in the face. When I asked how often someone might take this child into their laps and cuddle her, I was told that there was no staff in the facility with time for anything but basic care. While I was working with this little girl, a 3-year-old toddler with Down's Syndrome scooted over on hands and knees and crawled into my lap, where she proceeded to wrap her arms and legs around me and cuddle for dear life. [...]