May 30, 2000
A FUTILE SEARCH
PARENTS OF SEVERELY RETARDED BOY WOULD GIVE ANYTHING FOR THE RIGHT HELP FOR HIM
By Dana Damico
Ten-year-old Elliott Cone lives in Maryland – 400 miles from his mom and dad and other relatives in North Carolina who love him; from his dog, Margaret, who shadows him endlessly and nips at his shirttail; from his bedroom packed with stuffed animals and painted with Disney characters; and from the doctors and nurses who have cared for him since he was a toddler.
Elliott lives at a special-education school on Maryland’s Eastern Shore. This breaks his parents’ hearts.
It makes them angry. They cry.
“There’s no place in this state for people like Elliott or people who are even similar,” Elliott Cone Sr. said.
“I hate that he’s up there. I want to be with him.”
Elliott is autistic and has cerebral palsy and fragile X syndrome – an inherited genetic disorder that disrupts normal brain function – so he needs intensive educational and medical therapy. He needs round-the-clock care. His parents have spent years fighting for their son – first to find what was wrong, then to find treatment for him – but don’t consider it a victory that Elliott now lives so far away.
The problem is that mental-health services for children in North Carolinaare in crisis – resources are limited, and services are shrinking, said Dr. Ave Lachiewicz, a developmental pediatrician at the fragile X clinic at Duke University Medical Center.
The needs of about 1,000 developmentally and mentally disabled children are not being met – or they are being met only by services provided outside of the state, she said.
And as the Cones have learned, the pain of discovering that a child is mentally disabled is compounded by the frustration of how little help is available and how hard it can be to find.
Elliott Sr. started keeping a journal several years after his son’s birth, after the multiple diagnoses for his son’s unusual behavior started pelting the family from all directions. He started writing to make sense of what he was hearing. He started from the beginning.
Noticed problems early
“The human brain is the most complex. Sometimes it goes like clockwork sometimes it does not.”– Elliott Cone Sr.’s journal
When Nancy and Elliott married in 1989, the couple lived in a large waterfront house in a pricey neighborhood of Charleston, S.C. She worked as the vice president and general manager of two radio stations. He worked as an investigator for a law firm.
They had three children from previous marriages who attended private school. The family was close. They took trips to Disneyland, went boating, and Nancy and Elliott regularly attended the children’s soccer games.
“We had a lifestyle that we just really, I can’t believe we used to live,” Nancy said.
They weren’t trying to have a child. But three months after they married, they were surprised to learn that Nancy was pregnant.
They also were worried. They were in their mid-30s, and Nancy had been taking medication. They thought about the risk of the child having Down syndrome.
They went to the Medical University of South Carolina, where doctors investigated their medical histories and those of their extended family. The doctors took a snip of the placenta to check the health of the baby.
The doctors said not to worry – they had a normal, healthy boy.
Elliott Jr. was born May 8, 1990, with a massive tumor on his side. At 5-weeks, he underwent surgery to have it removed. Doctors also removed some muscle where the tumor had spread, but tests showed that the tumor was benign.
The doctors wrapped Elliott up, with the bandages keeping his arm extended and his hand near his face, and sent him home.
The cancer scare was behind them, but the Cones began to notice oddities in their son’s behavior. He cried uncontrollably. He couldn’t sleep more than two hours. He had problems sucking. His eyes quivered.
Elliott continued to hold his hand near his mouth even after the bandages were removed. At 7 months, he still couldn’t sit up. He suffered chronic ear infections. He couldn’t be comforted.
The Cones were sure that something was wrong.
“We knew how hard it was for him to eat. We knew how hard it was for him to just have peace,” Nancy said.
And so began a maddening series of doctor visits that offered few answers. The Cones started to feel that others considered them to be imagining problems where none existed.
Elliott ‘s brain scans appeared normal. A neurologist at Duke University Medical Center patted Nancy on the back and told her that she had a normal 1-year-old son.
The Cones didn’t believe it, and they were angry. They were frustrated.
“We knew something was wrong before anybody else did. That’s the strangest part of it,” Elliott Sr. said. “And nobody believed us.”
They began to hear such diagnoses as ocular albinism, a condition in which a lack of pigmentation in the eye leads to ultrasensitivity to light, and attention-deficit hyperactivity disorder. Later they were told Elliott had cerebral palsy.
But the Cones felt that none of those diagnoses matched the problems with their son’s behavior.
Caring for Elliott took its toll on the Cones . They tried to put him in day care, but the noise and lights bothered him. He cried madly. They hired a nanny, but still Elliott ‘s needs occupied all of their attention. He squirmed. He flailed his arms.
They missed work often. They felt as though they were hanging on by their thumbs, just waiting for divine intervention, Elliott Sr. said. They couldn’t afford to keep their house and the nanny and also spend so much time caring for their son. So they moved to Archdale, to the house where Nancy had grown up.
“We had no choice,” Nancy said. She recalled thinking: “Well, we need to do this because we’ve got to take care of Elliott , Elliott ‘s needs.”
Finally, a diagnosis
“At a glance, you may not notice much difference between my child and any normal child. . . . At times when I look at him napping I can not see the Fragile X. I can see the other child in him. The typical child, and by God he is handsome.”– Elliott Cone Sr.’s journal
Fragile X syndrome affects 1 in 1,000 to 1 in 4,000 boys. It affects fewer girls.
The Cones learned in January 1993, after visiting 22 doctors in the Carolinas, that their son had the disorder.
Fragile X is caused by an abnormal gene on the X chromosome. Those with the disorder can exhibit what Elliott Sr. calls a smorgasbord of other disabilities, including autism, learning problems, speech impairment and hyperactivity. It is the most common cause of inherited mental retardation.
Some people, including Nancy, carry the gene but show no sign of the disorder. Others have symptoms, but the severity varies widely.
Only one of Nancy’s four siblings carries the gene. Her 24-year-old son does not. A niece does. When blood tests confirmed the doctor’s diagnosis, Nancy was ashamed to tell her family.
“I thought: `Oh my God. It was me. I caused it. I should have known there was this monster lurking in our family,’ ” she said. “It’s such a beast.”
At the fragile X clinic at Duke, one of only a handful of such clinics in the country, the Cones learned that Elliott is moderately to severely retarded and is autistic too. Autism is a developmental disorder characterized by repetitive behavior and problems with social interaction and communication.
The Cones didn’t know what to do next. “You’re just going in 10 million degrees at once, and you don’t know what you’re doing,” Elliott Sr. said.
Because of the severity of Elliott ‘s problems, one doctor said that the boy might some day have to be placed in a long-term residential treatment center. The couple wouldn’t hear of it. Not yet.
“As long as we have a breath of air in our body, that child will be with us,” Nancy thought. “Nobody will get Elliott .”
No support system
“I do not profess to know what is going on in my son’s world. . . . I am not sure what he sees or how he sees; what he hears or how he hears; what he smells or how he smells; how he feels or what he feels. He and I seem trapped in two different worlds and we both are desperately struggling to be in one world together.”– Elliott Cone Sr.’s journal
Sometimes Elliott is gentle.
He smiles and moves around a lot. He swings doors open and shut, open and shut, open and shut until something diverts his attention. He plays with a motorized car and laughs when the engine goes “vrroom.”
But sometimes Elliott is dangerous. He hits and kicks and bites and bloodies himself and those who try to help him. His parents call these moments “crises” or “meltdowns.” And they are scary.
Lachiewicz has seen Nancy come to the clinic with bruises up and down her arms. Aggression is Elliott ‘s biggest obstacle, she said.
“He’s a very complicated kid,” Lachiewicz said. ” Elliott is probably one of the more difficult kids who came here with fragile X. . . . He overloaded as fast as any kid I ever saw in my life.”
Early intervention is crucial for special-needs children. A window of opportunity exists to help them. But that window slowly shuts, and the longer treatment is put off, the less effective it is.
Knowing that, the Cones often felt pushed against a wall in their search for services for their son. They were fumbling around without a support system.
They attended frequent meetings with Randolph County school officials to develop plans for their son’s education. They questioned what was being done in the classroom. They called in doctors to outline Elliott ‘s needs. They had their son transferred to a new school in the county.
They sought entry to a federal Medicaid program to help cover Elliott ‘s medical and therapy bills, as well as the cost of workers to care for him at home.
It was a frustrating, protracted process that left them bitter about local mental-health officials and the dearth of information on help for special-needs children.
Finding a proper place
“I personally felt I was drowning in a sea of confusion about what to do next. As a parent, it is my responsibility to figure out how to do the right thing and just what is the right thing to do. The problem is you are charting a course through unfamiliar terrain for yourself and your child.” — Elliott Cone Sr.’s journal
When Elliott was 7 1/2 , he had a severe meltdown. Elliott Sr. laid atop his son to keep him from hurting himself as Nancy called 18 hospitals, trying to get him admitted. None would accept Elliott because of his autism.
The next day Nancy signed commitment papers to have her son admitted to John Umstead Hospital, the state psychiatric hospital north of Durham.
She said that a mental-health official assured her that if the family did not like the hospital, they could take their son home. But once at Umstead, the couple learned that they could not simply remove Elliott , and they were told that sheriff’s officials would get involved if they tried.
Nancy weeps when she recalls the story. She calls herself stupid and blames herself for allowing Elliott to be placed there. “The whole thing was like a sick joke,” Elliott Sr. said.
Elliott was transferred to the Murdoch Center in Butner the next day, one of four centers in the state designed to offer medical care and treatment for the mentally retarded. He stayed 70 days. His parents visited every other night.
Elliott stayed in a room large enough for a dresser, a bed and a chair. The surroundings were stark. Elliott was surrounded by older adults who were severely retarded and in varying states of illness, Elliott Sr. said.
Elliott Sr. recalled thinking, the first time he approached the center: “My God. If this is the best the state of North Carolina can offer a 7 1/2 -year-old kid, there’s something really sick.”
“It didn’t look like anything from this country,” he said. “There was an insanity to try and walk in there. How did it come to this? I fought so desperately hard. I never knew anything like this existed.”
When Lachiewicz of the fragile X clinic dropped by Murdoch to see Elliott , she found him sitting on his bed staring at a spinning toy. An assistant sat nearby watching television, she said.
It was all wrong – children like Elliott need to interact with others. They need to avoid solitary, twirling-type activities.
After Elliott returned home, the Cones hired mental-health workers to stay at the house 24 hours a day. They also cleared furniture from the downstairs and moved a microwave oven and mini-refrigerator to their bedroom. They tried to give the mental-health workers as much room as they needed to help Elliott .
But the care structure soon crumbled. The mental-health workers gradually came by the house less frequently or sometimes not at all.
The Cones had Elliott admitted to Amos Cottage Children’s Rehabilitation Hospital in Winston-Salem on June 15, 1999. Amos is a hospital that offers short-term, inpatient care for “low-functioning” children, including those with autism. Unlike other psychiatric programs for children and adolescents, Amos can care for those with severe disabilities, said Dr. Kurt Klinepeter, the medical director at Amos and an associate professor of pediatrics at Wake Forest University School of Medicine.
Elliott ‘s stay at Amos was supposed to last about 30 days. It stretched to eight months. Elliott arrived at Amos agitated, disruptive and destructive, Klinepeter said. But Elliott grew accustomed to his schedule there. Elliott learned how to put on clothes, how to wash, how to tolerate small groups and how to communicate.
The Cones were happy with Amos, but Elliott couldn’t stay there. Nancy was told that Elliott needed more care than she and her husband could provide, and that community-based treatment – where services are brought to the family’s house – wouldn’t work either.
It was then that they started to look for a long-term residential treatment center.
The decision was devastating, said Marilyn Harmon Byrd, the Greensboro lawyer who represents the Cones . “They had fought so long and so hard to keep their child at home,” she said.
Need for intensive care
“It’s kind of strange, but since I have to deal with so many varied issues with Elliott and the impact he has had on my family a lot of things that used to matter and maybe even should; don’t. . . . I don’t care if people like me, but only care if it impacts my ability to provide something to my family and more specifically, Elliott .”– Elliott Cone Sr.’s journal
North Carolina operates four psychiatric hospitals, 39 community-based mental-health offices, several substance-abuse centers and four intermediate-care centers for the mentally retarded.
Separate from those, the privately run mental-health-care system in the state encompasses 10 psychiatric hospitals, 49 acute-care hospitals with psychiatric units and 3,400 group homes and mental-health centers.
But Klinepeter said that the number of programs geared toward children falls far short of the number of children who need them. Waiting lists are long. Younger children and those with more severe disabilities have even fewer options.
And North Carolina continues to shift its focus and resources from institutional care toward community-based treatment. Such in-the-home programs are not designed to be round-the-clock, Klinepeter said. The programs also call for families to rely on qualified workers, but often the agencies that hire such workers have high turnover, offer low salaries and don’t attract the most qualified people. In rural areas, there are few candidates for the jobs.
The general philosophy of caring for mentally and developmentally disabled children has also shifted to focusing on less restrictive care. But Klinepeter said that for about 1 percent to 2 percent of children who are “multi-impaired” – those who need ventilators, respiratory support or have severe autism – less restrictive care might not work.
“To be adequately cared for, some children need more care,” Klinepeter said. If society wants to commit to taking care of needy children, it must have a place for children who need highly intensive care, he said.
North Carolina is struggling with a limited pool of resources, however, and mental-health issues aren’t at the forefront.
“It’s not a priority to take care of those kids,” Lachiewicz said. “It’s not something that people are out there rallying for. . . . I don’t think it’s something that really hits people’s consciousness.
“I don’t think we’re hitting the nail on the head in terms of meeting these kids’ needs,” she said. “There really have been shrinking services in this state.”
Elliott ‘s family and those working on his behalf looked into public and private hospitals and group homes in North Carolina, searching for a place that would meet his educational, therapeutic and medical needs.
They looked outside the state too, to private hospitals in Florida, Massachusetts, Ohio and California. They felt that the Benedictine School for Exceptional Children in Ridgely, Md., best suited his needs.
Outside the state
“If I lose my son to this vulgar genetic hell I feel I will have lost myself.”– Elliott Cone Sr.’s journal
Built in 1959, Benedictine serves multihandicapped and mentally retarded children between the ages of 5 and 21. The majority of the 102 students who attend the school are from Maryland. Others come from outside the state or even outside the United States. Elliott is the only student from North Carolina.
Some students’ families pay the full tuition. Others get money from their local school systems and their social-services or mental-health departments, said Cindy Thornton, the school’s admissions director.
Elliott ‘s tuition for one school year at Benedictine is more than $100,000. He has an assistant assigned to him throughout the day and evening. He receives occupational and physical therapy, attends class with five other students, and has access to a speech therapist, psychologist, nurse and other health-care workers.
Randolph County school officials have maintained that they can meet Elliott ‘s educational needs. But Elliott ‘s doctors disagree. The Cones ‘ attorney helped broker an agreement between the county schools and the state health-and-human-services department in which the agencies split the cost of sending Elliott to Benedictine.
Mental-health advocates say that although such an arrangement is not unheard of, it is uncommon. “It’s not something that a local education authority wants to do,” said Karen Murphy, an advocacy administrator with the Governor’s Advocacy Council for Persons with Disabilities. “To hear of a school system giving in means that this case is indeed unusual and severe.”
Seven students from North Carolina currently participate in the out-of-district placement program run by the Department of Public Instruction, said Valerie Herndon, a consultant in the department’s exceptional children’s division. The program assists local school systems by covering up to 50 percent of the cost of sending a student outside the state to ensure that the student’s educational needs are met.
Of the seven, five are learning-disabled, one is autistic and one has a “health impairment,” a category that covers such things as a heart condition, tuberculosis or asthma.
Two students who go to school outside their home district but within North Carolina also participate in the program.
The Department of Public Instruction tracks only the number of children who receive money to attend school outside their school district. The department has no figures on how many others there are who don’t get money.
Dave Richard, the executive director of the Arc of North Carolina, a nonprofit advocacy agency for the mentally retarded, said that it is ridiculous for parents to have to send children outside the state for treatment. It should not be the only option, he said, and North Carolina should figure out how to take care of its own – it has the resources.
“To have to send a child away from home is just a horrible solution,” Richard said. It strains the family and the child. “Bottom line is that children should be educated in their home community. Bottom line is they ought to be close to their moms and dads.”
Elliott ‘s parents agree.
“If there’s only one Elliott in North Carolina that needed a special facility or whatever, then we owe that to our children. You don’t separate a family,” Nancy said. “What are we saying? They’re too severe? They’re not worthwhile? We can keep the tax dollars and build a facility here.”
Murphy understands the Cones ‘ passion. But she said that though it would be ideal for the state to meet every child’s needs, it’s not realistic. “I’m not sure every state has facilities to meet every person’s needs,” she said.
Worth Hatley, the superintendent of the Randolph County Schools, said that it would be more cost-effective for the state to build regional schools designed specifically for severely handicapped students.
“This situation and situations similar to this across the state are a real problem for public schools to deal with,” Hatley said. “I just wish there were really wonderful facilities in the state where they could go.”
Hatley pointed out that the school system and the Cones have spent a lot of money on lawyers in addition to the continued cost of keeping Elliott at Benedictine.
“Can anyone tell me that we can’t take that much money and serve 10 children if there was a place for them to go?” Hatley said.
Toward the best he can be
“I hope that at some point in my life or death I can really have the ability to enter his kingdom or domain.”
— Elliott Cone Sr.’s journal
Elliott won’t grow up to be a rocket scientist. Or a doctor, teacher or lawyer. Elliott ‘s parents know this. They want for Elliott the most basic thing that parents want for any child: for Elliott to be the best Elliott that he can be.
They hope that he can learn a vocation, learn to be semi-independent, learn to live in a group home.
They are encouraged by the progress that Elliott is making at Benedictine. His teachers say that Elliott is learning to communicate, can work at a table and is banging his head less often and less dangerously – small steps that are monumental to the Cones .
On a recent trip home to Archdale at Easter, Elliott used a communication book developed for him at Benedictine to interact with a health-care worker at the house.
Elliott twirled his lunch plate on the kitchen table, picking at a hamburger from Wendy’s. The worker asked Elliott to take a drink. Elliott dutifully slurped from his cup. The worker showed Elliott a series of cards with logos for such fast-food restaurants as Pizza Hut, Kentucky Fried Chicken and McDonald’s. The worker asked Elliott where his food came from. Elliott pulled the Wendy’s card.
Elliott moved around the kitchen, alternately grasping the worker’s hand, pulling at the refrigerator door, twirling his plate.
Finally, he pushed his plate away and pointed to a square on a specially designed placemat. Pointing to the square signaled that he was finished.
The worker complimented Elliott .
About a week later, on the morning that Elliott was scheduled to return to Maryland, he started to breathe in stressed, heavy bursts. He knew that his mom and dad were getting ready for a trip and that he would be leaving.
He sat on the couch and watched as they ferried suitcases from the bedroom to the front door and checked twice to make sure they had packed his medicine.
Elliott grabbed at his mother’s shirt, her face, her hair – but tenderly, groping for attention instead of lashing out in fear.
Tears welled in Nancy’s eyes.
On the way to the airport, Elliott cried. Nancy did too.
As painful as the separation is, the Cones believe that Benedictine is the best place for their son now. And they will fight to keep him there.
It won’t be easy. Or cheap. They have spent $15,000 so far on lawyers. They recently learned that they owe $50,000 more.
“We do have a battle in front of us,” Nancy said.
The agreement that allows Elliott to stay at Benedictine must be reviewed every year. His placement there could be revoked.
“You have to fight for something that you absolutely don’t want,” Elliott Sr. said. “That’s the insanity of it.”