WHAT HAPPENS TO CHILDREN NOBODY WANTS?
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public
Sometimes they end up with an elderly blind woman.
May 1997
Text by Marilyn Johnson Reporting by Jen M.R. Doman
Most of them are gone. The days when there were seven or eight handicapped children at a time under Norma Claypool's roof in Baltimore have passed. Last year there were five: Richard rocking back and forth, Kent clapping his hands compulsively, Evan banging his head against a chair, Dawna lightly slapping herself and Jamon fluttering his delicate, exquisite hands for hours. Now only Dawna and Jamon are left.
Richard, 19, went to college last fall, just like other bright young men with girlfriends and a passion for music and computers, except that he is blind and has had, as Norma Claypool says, "many, many, many, many, many surgeries" to try to smooth out his facial deformities. Kent, seven, and Evan, five, were sent to a family in Washington State that had already adopted two of Norma's older children. Dawna, who is 15, is at this very moment braying from behind the locked door of her room. Jamon, nine, scoots around on his back, licking cushions and admiring the way his hands float out in front of his scarred and flattened face. The sound of Dawna and the sight of Jamon are powerfully distracting to someone who has never been here before, but their mother also commands attention. Norma Claypool, 67, sits on a stained couch in pink sweatpants and a blue oxford blouse, her gray pageboy framing her blue eyes, which seem locked on the visitor's. They're made of glass; she has been blind since she was two. "Believe me, I see a lot of things," she says.
She is sitting in a bleak six-bedroom house on a corner lot in a modest neighborhood. There's a For Sale sign in the yard, and a plaque with a quotation from Joshua on the door: "As for me and my house, we will serve the Lord." Though it's furnished and decorated, after a fashion, the house is on its way to being empty. One window in the living room is bare; Jamon has pulled down the curtains. Crooked seascapes and clocks and a framed finger painting by Kenny, who died at age nine in 1983, decorate the walls. A newspaper clipping with a photo of a younger Norma surrounded by children of numerous races and disabilities is framed at the bottom of the stairs. "It's a Wonderful Life," its headline proclaims. Next to the couch is a card table overflowing with books on tape-novels, history, religion-and classical music cassettes.
Norma wants to move back to her hometown of Pittsburgh with Dawna and Jamon. These may be the last months in Baltimore for this extraordinary family and the woman who created it by bringing 15 hard-to-adopt children into her home, becoming their mother, then giving more than half of them away. Now she is settling in with a cup of Earl Grey tea, ready to talk.
Dawna bangs on her door with a camel bell; it sounds like she's rattling her chains. "She's good in her room, and it's safe there," Norma says. Jamon undulates up the steps, then howls and scrapes at Dawna's door for more than an hour while his mother holds court downstairs, delivering her stories with the polish of a former college teacher. She tells of heroic rescues, diagnoses she beat the doctors to, midnight vigils at the hospital. She offers funny stories and sweet, extraordinarily sweet, recollections, particularly of Sean, whom she used to take to the Salvation Army for religious services, and whom she once quieted before surgery with the promise of a tape of Bach. He died three summers ago when he was just four, after the shunt that drained fluid from his hydrocephalic brain cracked. Every day she misses him.
She often quotes Richard, her golden boy, and says she is dedicated to getting him through college. And she lavishes upon the visitor the triumphs of "my Jamon," the terribly damaged boy she salvaged and nursed through reconstructive surgeries and illnesses after his parents abandoned him at birth. "You can do quite a bit with plastic surgery," she says proudly. She calls the children with facial defects "unfinished" and says that helping to remake and remold their heads is gratifying, even if she can't see the results. "I just like the boys better," she confesses. "And I guess, in many ways, Richard is my favorite." Richard the college boy, blind and smart.
As she mines her list of adopted children, it becomes clear that for every child Norma loves and brags about, there are others who've disappointed her. Kent, a blind black albino who looks speckled, was given to Norma when he was seven months old in 1990, shortly after baby Sean's arrival, and he suffered by comparison. Sean was so calm and easy "you hardly knew he was there." Kent screamed "three years' worth," Norma says, still annoyed about it. He also clapped compulsively. It would be hard to find anyone who would want to live with a screaming child who repeatedly slaps his hands together, but it's disconcerting to hear his ex-mother dismiss Kent as "the child who never connected with me." Once, Norma told Kent to do something and he stamped his foot. She grabbed him by the arm and said, "Don't you answer me back, boy! "--a poignant story when you realize that Kent is mute. He was Norma's son for six years before she gave up on the relationship. Her last word on Kent: "At least I knew enough not to batter him."
Norma calls the profoundly retarded Noel, whom she adopted at three and a half in 1981, "one of the big mistakes I've made." The problem was that Noel "never made up to me." Norma first let an even older woman take care of Noel, then had the girl institutionalized. She finally sent her to Washington to live with the Cornyn family, a haven for children Norma can't handle.
Daniel was a violent and dangerous child from the moment she got him in 1984, according to Norma. She locked him in his little room in the basement so he wouldn't attack the others. Daniel was the only one of her children she ever took for counseling. He was, evaluated for three months, after which time, she says, the psychiatrists declared she could handle him better than they. The source of her power was physical domination: "I literally picked him up and slammed him down on the couch hard enough so that he knew I meant 'Sit there,' and I said, 'Don't you move!' And he froze." Daniel spent four years in Norma's house before she dropped him off at a Baltimore residential facility on Christmas Eve, 1988. Meredith McArdle, Daniel's teacher at the Maryland School for the Blind, where he now lives during the week, describes the boy as "just a really happy kid, a good kid" who can throw tantrums when frustrated, and even bite, but whose greatest problem seems to be that he craves attention. He is still a Claypool, but Norma hasn't seen him in nine years.
Then there was Evan, her most recent child. Lutheran Social Services of the National Capital Area, Inc., which gave Evan to Norma in 1992, didn't tell her the baby had, among other problems, cerebral palsy--an affliction Norma can't deal with, since arthritis makes it difficult for her to lift a rigid body. She knows she shouldn't have taken Evan, who lived in a crib for four years, his sleeve safety-pinned to the mattress so he wouldn't batter his head, with no wheelchair and no schooling, an object of pity to visitors. "She knew she had to give him up," Linda Cornyn, his new mother, says. "She did a lot of praying about it, and then began detaching. It was very, very difficult for her." Last year Evan and Kent were sent crosscountry to join Noel and Kevin, a brother who was given up in 1990. None of these children, Linda says, grieve for their former mother.
"She is realistic," says Maureen Kenny of Lutheran Social Services, who has worked with Norma for a dozen years, approving her for the last seven adoptions. "She was realistic when each of the children came into her home, and she is able to say when she has done everything she can. I know her well enough to know that the decisions [to give away her children] were not made without a lot of agonizing." Norma says, "Some of them I probably shouldn't have taken, and yet, what would have happened to them? I don't have any guilt feelings about it because they're probably better off than they would have been." That's the assumption most people make about multihandicapped children, that any home that takes them in is better than a state or private facility, and that any time these children spend in family care is better than nothing. Is that true? One could ask Kent, Noel, Daniel and Evan, but they can't tell us how it felt to live in Norma's house. None of them can speak.
The fairy tale of a blind woman rescuing unwanted, damaged creatures and transforming them into princes and princesses--the all-powerful mother who takes the painful and ugly messes of the world and turns them into heartwarming triumphs--has preceded us. The Baltimore Sun has extolled the family, and it's their photo of children of many races and afflictions gathered around the "courageous, capable and loving" Norma Claypool that is framed in her living room. Woman's Day said in 1984, "This is clearly a happy home, with a doting mother and children who are having fun. " In 1987, McCalt's urged its readers to "consider this story a gift to you from Norma and her children; a gift that comes wrapped in love and tied with courage." There are documentaries, one produced by Dutch Television, one by a Christian network, of Norma Claypool caring for her disabled children. The films feature prominent professionals and devoted volunteers who bear witness to her ambition and achievement as a mother. "Norma Claypool is someone whose blindness shows forth the glory of God." "She is one of the most exceptional people I have ever known." "She can diaper better than I can."
Nobody wants to attack an aging blind woman who embraces children with oozing heads and missing features. Norma collected them from private adoption agencies (a Catholic charity; two Lutheran organizations), none of which wanted to discriminate against her on the basis of her age or her handicap. Word spread that she was looking for multihandicapped children, especially those with birth defects--the least adoptable--and that she was willing to take on a number of children. The agencies began calling. The one that gave her Evan, she says, begged her to take him. For each adoption, she was supposed to be observed and evaluated in a home study and then supervised for six months. But many of the rules are negotiable if you're taking a hard-to-adopt child, and a couple of Norma's home studies were waived. As for the visits, "sometimes they don't bother," Norma says. "They phone it in."
"I don't think the system doesn't care," says Casandra Fallin, former adoption program manager for Maryland's Social Services Administration. "Maybe the system is relieved when someone else takes over in what are very difficult situations."
This particular home, where so many of those "very difficult situations" came to rest, was observed by a continuous stream of speech therapists, occupational therapists, home nurses and teachers, and not all of them saw a home that was fun. Chris Regusters, who worked for Norma for five years, until 1996, says that the diapers that went on the children at nine at night, just before she went home, were often unchanged when she returned 20 hours later. Jamon's teacher from 1992 through '94, Connie Harris, remembers "Norma sitting on the sofa playing Scrabble or solitaire or listening to tapes. She'd say, 'He's in the other room. ' It was all business. Other than lip service, I didn't see a whole lot of interest." The teacher so pitied Evan and worried about his lack of stimulation that she used to include him in Jamon's lessons. Eunice Bottom, an aide in the home for eight years, says that at first she thought Norma was "wonderful." She later changed her mind: "I realized that she had the ones she loved the best. Some of them, especially the black babies, weren't getting the love that they needed." "I don't think I ever made a difference because of their color," Norma responds matter-of-factly. "I truly don't."
As in any household, corners sometimes had to be cut. When Norma stayed at the hospital with one of the sicker children (for 66 days with Sean, for "fifty-something days" with Jamon), she had to find someone to care for all the others. Her blind daughter, Garnet, would be put in charge; or her blind teenage son, Richard; or an aide--who would sleep sitting up in a chair, keeping unpaid vigil. Staffers from Johns Hopkins Pediatrics at Home filed a complaint against Norma for leaving so many handicapped children in Richard's hands. The Baltimore County Department of Social Services told her not to do that anymore, then dropped the complaint. "If they really thought the children were being neglected, they should have taken them," Norma says.
Professionals have expressed dismay at the lack of stimulation, and at Norma's habit of locking children in their rooms. But the truth is, a blind woman caring for a child who has a mental age of two and could turn on the stove or jump on her younger, more fragile brother is going to find any way she can to keep that child out of trouble. How do we think a blind woman took care of so many acutely needy children, five or six or seven at a time? Those of us who can see and find it a challenge to keep a couple of healthy children out of danger can't imagine the difficulties of running this home. "It was out of control," says a Johns Hopkins home nurse. Says Norma: "I know I've had criticism for locking Dawna up. I'd like to know how anybody with more than one child would handle it. If you can do better, go ahead. You do it. I'm wearing out."
Even some of her critics sympathize with Norma. Chris Regusters shrugs when asked why she didn't complain. "At least she took them in, when even their own mothers wouldn't," she says. The agency that gave Norma baby Jamon in 1988 (when she had seven other handicapped children) and baby Evan in 1992 (when she had seven others and was 62 years old) defends its decisions. "Initially, we did not believe Evan would survive very long," says Anita Greenberg, supervisor for Adoption and Fostercare for Lutheran Social Services. "[But] children placed with Norma who had 'do not resuscitate' codes in the hospital have done extraordinarily well. Her love has brought these kids through." Maureen Kenny, also of the Lutheran organization, adds, "I would see children who were blossoming--kids who had come to her with terrible prognoses, a child who was expected to die in six months or a year, a child who was expected to be a vegetable."
Think of Evan as an example. He is a child with the following afflictions: cerebral palsy, hydrocephalus, seizure disorders, SIB (self-injurious behavior), cortical blindness and cognitive delays. Who can take on the job of raising such a child--and there are tens of thousands of them in this country--handling the demands day to day, feeding him, changing him, dealing with his medical problems, seeing that he's stimulated, loving him? The person who does is a saint, no matter how human she turns out to be.
Norma Claypool was not a welcome child. She was the youngest of six, born to a 40-year-old homemaker and her ironworker husband in Pittsburgh during the Depression. Her mother didn't bother to name her, Norma says, leaving that job to another daughter and her boyfriend. She describes her parents, who were fundamentalist Christians, as "firm," "somewhat chilly," "rather demanding" and "so rigid it was funny."
At two, Norma was found to have retinoblastoma, a type of cancer, and had two surgeries to remove her eyes. She was sent to a boarding school for the blind at five, "just too young, and I think it did affect me."
The school was ruled by partially sighted girls who were cruel to her and by teachers who never bothered to ask why she was taking a secretarial course instead of the college prep course she was suited for.
As a young woman supporting herself by typing from dictation, she worked for the welfare office in Pittsburgh; she rescued her first child, a little blind girl almost two years old, from a home for unwed mothers. Norma named the girl Elaine; the girl would change to Garnet when she got older. Norma went back to school, completing everything toward her doctorate in special education but a dissertation on "Aspects of Play." She accepted a job teaching in the education department of Coppin State College in Baltimore. There, in 1979, she began collecting children. Two years later she retired on disability--her throat muscles are too weak to sustain a career lecturing, she says--and used her retirement money to pay the adoption fees for her fifth handicapped child. She found she could live on pooled Social Security checks, which she and the children receive not because she is blind but because she has a weak throat. These days she collects $2,541 a month, she says: $969 for herself, $484 for Richard, $380 for Jamon and $708 for Dawna, "our rich child," who was born in Baltimore and is subsidized by the city. Her house payments are $762 a month. She is trying to pay Richard's tuition. "I think we can do it as long as we skimp on a few other things," she says. "I tease Richard and tell him, 'You better be glad your brother and sister pay for your food."
In seven years, from 1979 to 1985, Norma, already the mother of Garnet and Kenny, adopted seven more kids: Richard, Jothi, Noel, Dawna, Tommy, Daniel and Carol. Then she got Gayle in 1987, and Kevin and baby Jamon in '88. She sent Kevin on to the Cornyns two years later and within months took in babies Sean and Kent. Evan arrived in 1992. She never considered giving birth herself because retinoblastoma is inheritable. She kept her children home from school as long as possible--Richard off and on until he was 11, for instance--and held their hands during their "many, many, many, many, many surgeries." "This is going to hurt, sweetheart," she would tell them. "I'm sorry, but you have to have it. Scream all you want. Mother will stay right here with you."
It's late in the afternoon, time to give Jamon his fourth feeding of the day. Neocate Infant Formula, the substance that goes into his feeding tube, looks like orange juice and would cost nearly $500 a month if Norma had to buy it. She shakes a can, transfers it to what looks like a big baby bottle and leads the way upstairs to where Jamon has been scratching and wailing for Dawna. Norma settles down outside Dawna's room, unhitches Jamon's overalls and begins squeezing the liquid into Jamon's feeding tube. She rests against Dawna's door, and Jamon rests against the wall, which has been raked and scarred by his fingernails: a peaceful family scene. Suddenly the door Norma is leaning against jumps, kicked from the other side. "All right," Norma says as Dawna hurls her body at the door, howling. Jamon, who is deaf, giggles. "He loves the vibrations," Norma says.
After Jamon has ingested his meal, Norma stands and opens the door, and there, in faded red one-piece pajamas, vigorously banging a string of snap-on blocks against the linoleum, lolls Dawna, 15 going on two. The area around Dawna's mouth is a red chapped muzzle, the result of her sucking continuously on her own face. Next to her on the floor there is a pile of perhaps a dozen stuffed animals, the camel bell and a few key chains, one of them featuring her passion, the artist formerly known as Prince. "Hello there," Norma says. Dawna scrambles to her feet and, scratching herself, lumbers after her mother.
Norma walks through the room to show Richard's bedroom, which is adjacent. Richard is away at Lebanon Valley College and has taken his Casio keyboard with him. But his large, sunny room still holds furniture, a computer, a shortwave radio, a stereo, an electric guitar and his own telephone. Norma carefully shuts the door. "Let's get you the rest of your applesauce," she says to Dawna, and Dawna shambles downstairs, where Jamon is tossing cushions from the living room chairs. Dawna lives on pureed food, but her favorite thing to eat is soap.
Norma leads Dawna into the kitchen, gets eyedrops to treat the girl's glaucoma, then stands behind her, four foot eleven to Dawna's five foot one. Dawna throws back her head, exposing her throat to the ceiling. Norma stands on tiptoe and with just a little probing, opens Dawna's lids and squeezes the drops, without spilling them or jabbing her daughter's eyes.
Norma has made no provisions for when she dies. She thinks Dawna would be sad if she were gone but would handle it. Jamon is a different story. "I don't think Jamon would live long without his mother," Norma says.
There they are in their own house, two children nobody else wanted, being cared for by a woman nobody wanted. Who cares if the woman overestimated her ability and a strapped bureaucracy gave her too many children, not enough supervision, too little support? "I'll tell you," says Norma Claypool. "I'd take another baby with defects right this minute."
What is the right kind of family ?
Norma Claypool has always had the sense to pass along those children she wasn't right for. She sent Gayle, a microcephalic with severe cerebral palsy, to a family in Pennsylvania. She sent Jothi, her only healthy child, whom she had adopted as an 11-year-old from India, to live with a neighbor because of "rebelliousness," she says. "And the Cornyns have four of my children--what were my children." Linda Cornyn, who had been referred to Norma by a friend in Maryland, flew east to pick up the profoundly retarded Noel in 1987 and then got Kevin, who has fetal alcohol syndrome and is microcephalic, in 1990. Linda picked up Kent and Evan last year. The Cornyns thought Kent Cornyn sounded great, but Evan has been renamed Simeon, just as Kevin had earlier become Kevyn. 'We feel they need a new beginning and a fresh start," Linda says.
The Cornyns are a family the size of a small village. There are currently 42 children living in the 14-bedroom, seven-bath house, many of them with severe emotional, mental or physical problems. The Cornyns began their career in adoption as a military family stationed in Korea, and believe God sends them these children. They have an amazing support team, enjoying close ties with the local food bank, the Korean church community, four local doctors and eight helpers who come in daily. The older, healthier children help care for the younger and more disabled ones, and with Bob's army pension, the children's Supplemental Security Income payments and adoption subsidies totaling more than $8,500 a month, there is food and clothing for all.
The Cornyns and Norma Claypool are unusual, but not alone, in their adopting. "There are all kinds of people who have embraced children who have serious problems," says adoption expert Casandra Fallin. "The challenge is to find them." David S. Liederman, executive director of the Child Welfare League of America, estimates there are 250,000 handicapped children in foster care in the country, a minority of them in family situations, the large majority in group homes or residential programs--what are usually known as "institutions." Liederman feels that group care, with its infrastructure of support, works better for children with multiple handicaps than does family care. "Some of these kids are very hard to handle," he says. "It's not just three meals and a cot. You've got to have social workers, psychologists, a medical program. But wherever they are, whether they're in a family or in a group home, you want them to be extremely well taken care of. Bottom line. End of discussion."
Other experts say that family care is almost always preferable. A child's "potential for development cannot be realized in an institution," says Marshall D. Schechter, M.D., professor emeritus of child psychiatry at the University of Pennsylvania and coauthor of Being Adopted. He adds, "Have you ever visited any of these places?" And Joe Kroll, executive director of the North American Council onAdoptableChildren, has seen the most severely handicapped children cared for in families very well. There's someone holding that child, caring for that child--the kind of care you'd never get in an institution. The thing you've got to make sure of is, you have to have the right kind of family."
Linda Cornyn feels Norma Claypool provided that kind of family. "She's as close to a saint as I've ever met," says Linda, while adding that she believes Norma is increasingly aware of her own limits. "Why else would she have sent these children to us?"
Most of them are gone. The days when there were seven or eight handicapped children at a time under Norma Claypool's roof in Baltimore have passed. Last year there were five: Richard rocking back and forth, Kent clapping his hands compulsively, Evan banging his head against a chair, Dawna lightly slapping herself and Jamon fluttering his delicate, exquisite hands for hours. Now only Dawna and Jamon are left.
Richard, 19, went to college last fall, just like other bright young men with girlfriends and a passion for music and computers, except that he is blind and has had, as Norma Claypool says, "many, many, many, many, many surgeries" to try to smooth out his facial deformities. Kent, seven, and Evan, five, were sent to a family in Washington State that had already adopted two of Norma's older children. Dawna, who is 15, is at this very moment braying from behind the locked door of her room. Jamon, nine, scoots around on his back, licking cushions and admiring the way his hands float out in front of his scarred and flattened face. The sound of Dawna and the sight of Jamon are powerfully distracting to someone who has never been here before, but their mother also commands attention. Norma Claypool, 67, sits on a stained couch in pink sweatpants and a blue oxford blouse, her gray pageboy framing her blue eyes, which seem locked on the visitor's. They're made of glass; she has been blind since she was two. "Believe me, I see a lot of things," she says.
She is sitting in a bleak six-bedroom house on a corner lot in a modest neighborhood. There's a For Sale sign in the yard, and a plaque with a quotation from Joshua on the door: "As for me and my house, we will serve the Lord." Though it's furnished and decorated, after a fashion, the house is on its way to being empty. One window in the living room is bare; Jamon has pulled down the curtains. Crooked seascapes and clocks and a framed finger painting by Kenny, who died at age nine in 1983, decorate the walls. A newspaper clipping with a photo of a younger Norma surrounded by children of numerous races and disabilities is framed at the bottom of the stairs. "It's a Wonderful Life," its headline proclaims. Next to the couch is a card table overflowing with books on tape-novels, history, religion-and classical music cassettes.
Norma wants to move back to her hometown of Pittsburgh with Dawna and Jamon. These may be the last months in Baltimore for this extraordinary family and the woman who created it by bringing 15 hard-to-adopt children into her home, becoming their mother, then giving more than half of them away. Now she is settling in with a cup of Earl Grey tea, ready to talk.
Dawna bangs on her door with a camel bell; it sounds like she's rattling her chains. "She's good in her room, and it's safe there," Norma says. Jamon undulates up the steps, then howls and scrapes at Dawna's door for more than an hour while his mother holds court downstairs, delivering her stories with the polish of a former college teacher. She tells of heroic rescues, diagnoses she beat the doctors to, midnight vigils at the hospital. She offers funny stories and sweet, extraordinarily sweet, recollections, particularly of Sean, whom she used to take to the Salvation Army for religious services, and whom she once quieted before surgery with the promise of a tape of Bach. He died three summers ago when he was just four, after the shunt that drained fluid from his hydrocephalic brain cracked. Every day she misses him.
She often quotes Richard, her golden boy, and says she is dedicated to getting him through college. And she lavishes upon the visitor the triumphs of "my Jamon," the terribly damaged boy she salvaged and nursed through reconstructive surgeries and illnesses after his parents abandoned him at birth. "You can do quite a bit with plastic surgery," she says proudly. She calls the children with facial defects "unfinished" and says that helping to remake and remold their heads is gratifying, even if she can't see the results. "I just like the boys better," she confesses. "And I guess, in many ways, Richard is my favorite." Richard the college boy, blind and smart.
As she mines her list of adopted children, it becomes clear that for every child Norma loves and brags about, there are others who've disappointed her. Kent, a blind black albino who looks speckled, was given to Norma when he was seven months old in 1990, shortly after baby Sean's arrival, and he suffered by comparison. Sean was so calm and easy "you hardly knew he was there." Kent screamed "three years' worth," Norma says, still annoyed about it. He also clapped compulsively. It would be hard to find anyone who would want to live with a screaming child who repeatedly slaps his hands together, but it's disconcerting to hear his ex-mother dismiss Kent as "the child who never connected with me." Once, Norma told Kent to do something and he stamped his foot. She grabbed him by the arm and said, "Don't you answer me back, boy! "--a poignant story when you realize that Kent is mute. He was Norma's son for six years before she gave up on the relationship. Her last word on Kent: "At least I knew enough not to batter him."
Norma calls the profoundly retarded Noel, whom she adopted at three and a half in 1981, "one of the big mistakes I've made." The problem was that Noel "never made up to me." Norma first let an even older woman take care of Noel, then had the girl institutionalized. She finally sent her to Washington to live with the Cornyn family, a haven for children Norma can't handle.
Daniel was a violent and dangerous child from the moment she got him in 1984, according to Norma. She locked him in his little room in the basement so he wouldn't attack the others. Daniel was the only one of her children she ever took for counseling. He was, evaluated for three months, after which time, she says, the psychiatrists declared she could handle him better than they. The source of her power was physical domination: "I literally picked him up and slammed him down on the couch hard enough so that he knew I meant 'Sit there,' and I said, 'Don't you move!' And he froze." Daniel spent four years in Norma's house before she dropped him off at a Baltimore residential facility on Christmas Eve, 1988. Meredith McArdle, Daniel's teacher at the Maryland School for the Blind, where he now lives during the week, describes the boy as "just a really happy kid, a good kid" who can throw tantrums when frustrated, and even bite, but whose greatest problem seems to be that he craves attention. He is still a Claypool, but Norma hasn't seen him in nine years.
Then there was Evan, her most recent child. Lutheran Social Services of the National Capital Area, Inc., which gave Evan to Norma in 1992, didn't tell her the baby had, among other problems, cerebral palsy--an affliction Norma can't deal with, since arthritis makes it difficult for her to lift a rigid body. She knows she shouldn't have taken Evan, who lived in a crib for four years, his sleeve safety-pinned to the mattress so he wouldn't batter his head, with no wheelchair and no schooling, an object of pity to visitors. "She knew she had to give him up," Linda Cornyn, his new mother, says. "She did a lot of praying about it, and then began detaching. It was very, very difficult for her." Last year Evan and Kent were sent crosscountry to join Noel and Kevin, a brother who was given up in 1990. None of these children, Linda says, grieve for their former mother.
"She is realistic," says Maureen Kenny of Lutheran Social Services, who has worked with Norma for a dozen years, approving her for the last seven adoptions. "She was realistic when each of the children came into her home, and she is able to say when she has done everything she can. I know her well enough to know that the decisions [to give away her children] were not made without a lot of agonizing." Norma says, "Some of them I probably shouldn't have taken, and yet, what would have happened to them? I don't have any guilt feelings about it because they're probably better off than they would have been." That's the assumption most people make about multihandicapped children, that any home that takes them in is better than a state or private facility, and that any time these children spend in family care is better than nothing. Is that true? One could ask Kent, Noel, Daniel and Evan, but they can't tell us how it felt to live in Norma's house. None of them can speak.
The fairy tale of a blind woman rescuing unwanted, damaged creatures and transforming them into princes and princesses--the all-powerful mother who takes the painful and ugly messes of the world and turns them into heartwarming triumphs--has preceded us. The Baltimore Sun has extolled the family, and it's their photo of children of many races and afflictions gathered around the "courageous, capable and loving" Norma Claypool that is framed in her living room. Woman's Day said in 1984, "This is clearly a happy home, with a doting mother and children who are having fun. " In 1987, McCalt's urged its readers to "consider this story a gift to you from Norma and her children; a gift that comes wrapped in love and tied with courage." There are documentaries, one produced by Dutch Television, one by a Christian network, of Norma Claypool caring for her disabled children. The films feature prominent professionals and devoted volunteers who bear witness to her ambition and achievement as a mother. "Norma Claypool is someone whose blindness shows forth the glory of God." "She is one of the most exceptional people I have ever known." "She can diaper better than I can."
Nobody wants to attack an aging blind woman who embraces children with oozing heads and missing features. Norma collected them from private adoption agencies (a Catholic charity; two Lutheran organizations), none of which wanted to discriminate against her on the basis of her age or her handicap. Word spread that she was looking for multihandicapped children, especially those with birth defects--the least adoptable--and that she was willing to take on a number of children. The agencies began calling. The one that gave her Evan, she says, begged her to take him. For each adoption, she was supposed to be observed and evaluated in a home study and then supervised for six months. But many of the rules are negotiable if you're taking a hard-to-adopt child, and a couple of Norma's home studies were waived. As for the visits, "sometimes they don't bother," Norma says. "They phone it in."
"I don't think the system doesn't care," says Casandra Fallin, former adoption program manager for Maryland's Social Services Administration. "Maybe the system is relieved when someone else takes over in what are very difficult situations."
This particular home, where so many of those "very difficult situations" came to rest, was observed by a continuous stream of speech therapists, occupational therapists, home nurses and teachers, and not all of them saw a home that was fun. Chris Regusters, who worked for Norma for five years, until 1996, says that the diapers that went on the children at nine at night, just before she went home, were often unchanged when she returned 20 hours later. Jamon's teacher from 1992 through '94, Connie Harris, remembers "Norma sitting on the sofa playing Scrabble or solitaire or listening to tapes. She'd say, 'He's in the other room. ' It was all business. Other than lip service, I didn't see a whole lot of interest." The teacher so pitied Evan and worried about his lack of stimulation that she used to include him in Jamon's lessons. Eunice Bottom, an aide in the home for eight years, says that at first she thought Norma was "wonderful." She later changed her mind: "I realized that she had the ones she loved the best. Some of them, especially the black babies, weren't getting the love that they needed." "I don't think I ever made a difference because of their color," Norma responds matter-of-factly. "I truly don't."
As in any household, corners sometimes had to be cut. When Norma stayed at the hospital with one of the sicker children (for 66 days with Sean, for "fifty-something days" with Jamon), she had to find someone to care for all the others. Her blind daughter, Garnet, would be put in charge; or her blind teenage son, Richard; or an aide--who would sleep sitting up in a chair, keeping unpaid vigil. Staffers from Johns Hopkins Pediatrics at Home filed a complaint against Norma for leaving so many handicapped children in Richard's hands. The Baltimore County Department of Social Services told her not to do that anymore, then dropped the complaint. "If they really thought the children were being neglected, they should have taken them," Norma says.
Professionals have expressed dismay at the lack of stimulation, and at Norma's habit of locking children in their rooms. But the truth is, a blind woman caring for a child who has a mental age of two and could turn on the stove or jump on her younger, more fragile brother is going to find any way she can to keep that child out of trouble. How do we think a blind woman took care of so many acutely needy children, five or six or seven at a time? Those of us who can see and find it a challenge to keep a couple of healthy children out of danger can't imagine the difficulties of running this home. "It was out of control," says a Johns Hopkins home nurse. Says Norma: "I know I've had criticism for locking Dawna up. I'd like to know how anybody with more than one child would handle it. If you can do better, go ahead. You do it. I'm wearing out."
Even some of her critics sympathize with Norma. Chris Regusters shrugs when asked why she didn't complain. "At least she took them in, when even their own mothers wouldn't," she says. The agency that gave Norma baby Jamon in 1988 (when she had seven other handicapped children) and baby Evan in 1992 (when she had seven others and was 62 years old) defends its decisions. "Initially, we did not believe Evan would survive very long," says Anita Greenberg, supervisor for Adoption and Fostercare for Lutheran Social Services. "[But] children placed with Norma who had 'do not resuscitate' codes in the hospital have done extraordinarily well. Her love has brought these kids through." Maureen Kenny, also of the Lutheran organization, adds, "I would see children who were blossoming--kids who had come to her with terrible prognoses, a child who was expected to die in six months or a year, a child who was expected to be a vegetable."
Think of Evan as an example. He is a child with the following afflictions: cerebral palsy, hydrocephalus, seizure disorders, SIB (self-injurious behavior), cortical blindness and cognitive delays. Who can take on the job of raising such a child--and there are tens of thousands of them in this country--handling the demands day to day, feeding him, changing him, dealing with his medical problems, seeing that he's stimulated, loving him? The person who does is a saint, no matter how human she turns out to be.
Norma Claypool was not a welcome child. She was the youngest of six, born to a 40-year-old homemaker and her ironworker husband in Pittsburgh during the Depression. Her mother didn't bother to name her, Norma says, leaving that job to another daughter and her boyfriend. She describes her parents, who were fundamentalist Christians, as "firm," "somewhat chilly," "rather demanding" and "so rigid it was funny."
At two, Norma was found to have retinoblastoma, a type of cancer, and had two surgeries to remove her eyes. She was sent to a boarding school for the blind at five, "just too young, and I think it did affect me."
The school was ruled by partially sighted girls who were cruel to her and by teachers who never bothered to ask why she was taking a secretarial course instead of the college prep course she was suited for.
As a young woman supporting herself by typing from dictation, she worked for the welfare office in Pittsburgh; she rescued her first child, a little blind girl almost two years old, from a home for unwed mothers. Norma named the girl Elaine; the girl would change to Garnet when she got older. Norma went back to school, completing everything toward her doctorate in special education but a dissertation on "Aspects of Play." She accepted a job teaching in the education department of Coppin State College in Baltimore. There, in 1979, she began collecting children. Two years later she retired on disability--her throat muscles are too weak to sustain a career lecturing, she says--and used her retirement money to pay the adoption fees for her fifth handicapped child. She found she could live on pooled Social Security checks, which she and the children receive not because she is blind but because she has a weak throat. These days she collects $2,541 a month, she says: $969 for herself, $484 for Richard, $380 for Jamon and $708 for Dawna, "our rich child," who was born in Baltimore and is subsidized by the city. Her house payments are $762 a month. She is trying to pay Richard's tuition. "I think we can do it as long as we skimp on a few other things," she says. "I tease Richard and tell him, 'You better be glad your brother and sister pay for your food."
In seven years, from 1979 to 1985, Norma, already the mother of Garnet and Kenny, adopted seven more kids: Richard, Jothi, Noel, Dawna, Tommy, Daniel and Carol. Then she got Gayle in 1987, and Kevin and baby Jamon in '88. She sent Kevin on to the Cornyns two years later and within months took in babies Sean and Kent. Evan arrived in 1992. She never considered giving birth herself because retinoblastoma is inheritable. She kept her children home from school as long as possible--Richard off and on until he was 11, for instance--and held their hands during their "many, many, many, many, many surgeries." "This is going to hurt, sweetheart," she would tell them. "I'm sorry, but you have to have it. Scream all you want. Mother will stay right here with you."
It's late in the afternoon, time to give Jamon his fourth feeding of the day. Neocate Infant Formula, the substance that goes into his feeding tube, looks like orange juice and would cost nearly $500 a month if Norma had to buy it. She shakes a can, transfers it to what looks like a big baby bottle and leads the way upstairs to where Jamon has been scratching and wailing for Dawna. Norma settles down outside Dawna's room, unhitches Jamon's overalls and begins squeezing the liquid into Jamon's feeding tube. She rests against Dawna's door, and Jamon rests against the wall, which has been raked and scarred by his fingernails: a peaceful family scene. Suddenly the door Norma is leaning against jumps, kicked from the other side. "All right," Norma says as Dawna hurls her body at the door, howling. Jamon, who is deaf, giggles. "He loves the vibrations," Norma says.
After Jamon has ingested his meal, Norma stands and opens the door, and there, in faded red one-piece pajamas, vigorously banging a string of snap-on blocks against the linoleum, lolls Dawna, 15 going on two. The area around Dawna's mouth is a red chapped muzzle, the result of her sucking continuously on her own face. Next to her on the floor there is a pile of perhaps a dozen stuffed animals, the camel bell and a few key chains, one of them featuring her passion, the artist formerly known as Prince. "Hello there," Norma says. Dawna scrambles to her feet and, scratching herself, lumbers after her mother.
Norma walks through the room to show Richard's bedroom, which is adjacent. Richard is away at Lebanon Valley College and has taken his Casio keyboard with him. But his large, sunny room still holds furniture, a computer, a shortwave radio, a stereo, an electric guitar and his own telephone. Norma carefully shuts the door. "Let's get you the rest of your applesauce," she says to Dawna, and Dawna shambles downstairs, where Jamon is tossing cushions from the living room chairs. Dawna lives on pureed food, but her favorite thing to eat is soap.
Norma leads Dawna into the kitchen, gets eyedrops to treat the girl's glaucoma, then stands behind her, four foot eleven to Dawna's five foot one. Dawna throws back her head, exposing her throat to the ceiling. Norma stands on tiptoe and with just a little probing, opens Dawna's lids and squeezes the drops, without spilling them or jabbing her daughter's eyes.
Norma has made no provisions for when she dies. She thinks Dawna would be sad if she were gone but would handle it. Jamon is a different story. "I don't think Jamon would live long without his mother," Norma says.
There they are in their own house, two children nobody else wanted, being cared for by a woman nobody wanted. Who cares if the woman overestimated her ability and a strapped bureaucracy gave her too many children, not enough supervision, too little support? "I'll tell you," says Norma Claypool. "I'd take another baby with defects right this minute."
What is the right kind of family ?
Norma Claypool has always had the sense to pass along those children she wasn't right for. She sent Gayle, a microcephalic with severe cerebral palsy, to a family in Pennsylvania. She sent Jothi, her only healthy child, whom she had adopted as an 11-year-old from India, to live with a neighbor because of "rebelliousness," she says. "And the Cornyns have four of my children--what were my children." Linda Cornyn, who had been referred to Norma by a friend in Maryland, flew east to pick up the profoundly retarded Noel in 1987 and then got Kevin, who has fetal alcohol syndrome and is microcephalic, in 1990. Linda picked up Kent and Evan last year. The Cornyns thought Kent Cornyn sounded great, but Evan has been renamed Simeon, just as Kevin had earlier become Kevyn. 'We feel they need a new beginning and a fresh start," Linda says.
The Cornyns are a family the size of a small village. There are currently 42 children living in the 14-bedroom, seven-bath house, many of them with severe emotional, mental or physical problems. The Cornyns began their career in adoption as a military family stationed in Korea, and believe God sends them these children. They have an amazing support team, enjoying close ties with the local food bank, the Korean church community, four local doctors and eight helpers who come in daily. The older, healthier children help care for the younger and more disabled ones, and with Bob's army pension, the children's Supplemental Security Income payments and adoption subsidies totaling more than $8,500 a month, there is food and clothing for all.
The Cornyns and Norma Claypool are unusual, but not alone, in their adopting. "There are all kinds of people who have embraced children who have serious problems," says adoption expert Casandra Fallin. "The challenge is to find them." David S. Liederman, executive director of the Child Welfare League of America, estimates there are 250,000 handicapped children in foster care in the country, a minority of them in family situations, the large majority in group homes or residential programs--what are usually known as "institutions." Liederman feels that group care, with its infrastructure of support, works better for children with multiple handicaps than does family care. "Some of these kids are very hard to handle," he says. "It's not just three meals and a cot. You've got to have social workers, psychologists, a medical program. But wherever they are, whether they're in a family or in a group home, you want them to be extremely well taken care of. Bottom line. End of discussion."
Other experts say that family care is almost always preferable. A child's "potential for development cannot be realized in an institution," says Marshall D. Schechter, M.D., professor emeritus of child psychiatry at the University of Pennsylvania and coauthor of Being Adopted. He adds, "Have you ever visited any of these places?" And Joe Kroll, executive director of the North American Council onAdoptableChildren, has seen the most severely handicapped children cared for in families very well. There's someone holding that child, caring for that child--the kind of care you'd never get in an institution. The thing you've got to make sure of is, you have to have the right kind of family."
Linda Cornyn feels Norma Claypool provided that kind of family. "She's as close to a saint as I've ever met," says Linda, while adding that she believes Norma is increasingly aware of her own limits. "Why else would she have sent these children to us?"