Guest guest Posted May 11, 2003 Report Share Posted May 11, 2003 I found this article today and thought it might be of interest..... The Following article is from <A HREF= " www.bergen.com " >The Bergen Record</A>: Teaneck woman's mission in life is caring for autistic son Sunday, May 11, 2003 By Lindy Washburn STAFF WRITER } Photo by: DANIELLE P. RICHARDS Aquilino staring out the window of his room on a sunny morning. For months, the autistic teenager refused to leave his Teaneck home. Beyond the half-open Dutch door of his room, Aquilino sits cross-legged on the bed, a strapping 13-year-old with jutting knees, tousled hair, and a pacifier in his mouth. Lunch will be here soon. Nick tucks his head, rocking gently forward and back. His soft hands swirl a cloth rattle. Its beads make a soothing sound, like plastic maracas. The rattle is meant for a baby, but this is the 12th whose cloth covering Nick has worn to a frazzle. The boy's voice rises and falls, an open vowel with no words, like a tired singer warming up. He has not set foot outside his house in months. Brain-injured at birth, severely autistic, neglected and mistreated at a group home, he came home in June. Months later, in the dead of winter, he sits on his bed and will not leave. If pressed to move toward the door, Nick resists with every muscle in his body, hitting, scratching, biting, kicking. He cannot explain. He has no words. The neighbors on this leafy Teaneck street almost never see Nick. Yet he poignantly personifies some of the most difficult social issues confronting this community, or any community. Deprived of oxygen for hours during his botched delivery, he is one of medical malpractice's worst cases - a " bad baby'' in lawyers' slang - grown up. He is autism's older face, a child beyond the age of early intervention. He is a survivor of neglect and abuse, an alumnus of a group home where he and other boys were restrained and " taken down,'' or wrestled to the floor - a controversial behavioral remedy now the subject of legislative debate in Trenton. He is the public schools' challenge. He is the taxpayers' burden. More than anything, he is a reminder of the limitless obligations and limited power of a mother's love. Medical science and special education offer Nick no answers, only possible suggestions. Since coming home last summer, he has slipped further and further inside himself. School buses for special programs have come, waited, and left, their contracts canceled because Nick won't leave his room. His slip-on shoes lie unused in the front hall, gathering dust. The two women who care for him - his mother, , and his caregiver, Sylvia Armstrong - are bruised and battered by his resistance and no longer try to force him out. But he can never be left alone. They trade shifts in 24/7 tedium. He has become, it seems, both prisoner and jailer - prisoner to his condition, jailer to them. In these narrow confines, hope is small, the effort to sustain it large. " We feel like there's no light at the end of the tunnel,'' says , a 51-year-old dentist and medical librarian with no occupation now other than the care of her son. hopes Nick will settle down enough to want to go out again, if only for a ride down bustling Washington Avenue in Bergenfield. That he will stop hurting himself and her when he's anxious, and learn other ways to express his anxiety. That one day he'll go willingly to a school or sheltered workshop. That a group home might be found where he won't be held down or tied up. On this ordinary street, clings to hope while her options run out. She walks in from her daily trip to the fast-food takeout window, loaded with bags of food: chicken nuggets, fries, and orange soda for Nick, salads and yogurt parfaits for herself and Armstrong. It's the high point of the day. Nick begins to rock more quickly. He takes out the pacifier, voice oscillating up and down in an open-throated Ooooh. Time to eat. What is it like to be Nick's mother? How can you mother a boy like Nick - a boy who doesn't want to be touched, who cannot talk to you, whose anxiety leads him to scratch you, grab you by the throat, and bite your arm so hard it draws blood? A boy who watches " Sesame Street'' while getting a shave? How can you be the best mother you can, when you've been kept awake night after night by your son's perverse schedule, controlled as it is by unknowable biologic imperatives, and you are tired, so, so tired? How can you be that mother when there is no day off, no weekend down the shore, no Christmas dinner with friends and family? When you fantasize about just a few hours browsing in a bookstore, and can't manage even that? When it's a major accomplishment to get to the dentist for a tooth that aches, and your glasses have been held together with tape for months? How can you mother a boy who can't tell you he's hungry or his throat hurts, who doesn't recognize the danger of an oncoming truck or the damage of his own fists pounding on his head? How can you mother a boy who lives only in the present, content for hours with an endless video loop of Elmo, and cannot express the memories that apparently bubble up when he cries for hours, or when he cocoons himself in blankets, with only a tiny opening for breath, or when he flinches, protecting his head, when you wake him? How can you mother a boy who never asked for any of this, whose thick brown hair and broad nose and fleeting smile remind you so powerfully of your husband, his father, who died way too soon? Aquilino loved Nick. Nick was just 5 when lung cancer killed , who had stayed home to raise him. asked you never to put his son in an institution. But in desperation, you did. Afraid Nick would hurt you - and himself - you found the best place you could, hoping its well-regarded program would address Nick's changing hormones and evolving needs and get him on the right track to adulthood. It didn't. So now you've brought him home. And you're trying, God knows, you're trying. You're trying because this is your son, the baby brought back from the brink when his birth went wrong, the infant who survived. You're trying because you can see the life force coursing through him when he jumps up and down in happiness, shaking the house. You can see it when he jiggles to the beat of the Dixie Chicks. You can see it, too, when he resists the things he fears, fighting as if his very life depended on it. You're trying because you remember how Nick laid his head on his daddy's shoulder, and relaxed in his daddy's lap. You're touched by his simple desire for companionship, when he steals into your study in the evening and plops into your armchair as you work at the computer. He sits near you for hours, listening to his music. His eyes flicker over you. He watches. You're trying because you believe that the measure of our society, of our civilization, is found in the care we provide our most vulnerable members. And you're trying because you know other mothers who don't have their sons anymore ... and you have a chance. You can help him to trust the world again and to know happiness and contentment more hours than not. And that is your purpose. So you hold everyone who deals with Nick to account. Educators, group-home operators, politicians, bureaucrats, lawyers, doctors, reporters - you prick their consciences and hold high their ethics and demand the best of their professions and their character. You may make them angry. You may seem relentless. You are just trying to be a good mother. Despite everything, says she's lucky. Lucky because she has no other children to worry about. Lucky because the $2 million malpractice settlement from Nick's birth provides a lifetime annuity for his care. Lucky because she could bring her son home. When Nick was living at Bancroft NeuroHealth's Dunhill Group Home in Voorhees, was the classic involved parent. She visited each week, knew the staff by name, and eventually rented an apartment nearby. But she pulled Nick out in June, afraid he would pay the price for her complaints. She couldn't escape the mounting signs of trouble: Bruises on Nick's arms, with apparent teeth and finger marks. There were no injury reports of the incidents, as required. Shaved heads for Nick and the four other boys in the home. The reason became apparent when a dead louse dropped into the bath water a few days after he got home. New staff members, replacements for others who had been fired, dispensing powerful prescription medicines to boys they didn't know, who couldn't even say their own names. When Nick's psychiatrist asked them to evaluate the effects of a new drug, they were unable to do so. Nor did they know the plans to toilet-train Nick and manage his aggressive behavior. Little food in the home's refrigerator and no " pull-up'' diapers for the boys when visited one weekend. Staff told her they didn't have access to money to buy supplies. couldn't reach a supervisor. learned Nick had been taken to the doctor for a sinus infection, as she had requested, but inexplicably had also been referred for a " possible circumcision.'' She also was told the staff had made plans to teach Nick how to masturbate using a model, without her knowledge or consent. The 13-year-old brought home was bald, wearing diapers, and ravenously hungry. She complained to the Teaneck school district, which had a contract with Bancroft for Nick's education and care. After a visit to Dunhill, Sheila Pozensky, the district's director of special instructional services, wrote that she was " appalled'' by Bancroft's " apparent mismanagement, lack of responsiveness to a client, and the total lack of knowledge and supervision'' of the group home. 's complaints to the state Division of Developmental Disabilities about abuse and neglect were also validated. The chief of the division's special response unit issued seven recommendations regarding Dunhill. The division has no authority to levy fines, however. Bancroft's spokesman, Healy, acknowledges " there were issues at the group homes'' and some staff were disciplined. " When these issues were brought up, we addressed them,'' he says. Bancroft has no record of any complaint involving circumcision or masturbation, he says, and allegations that the children weren't receiving enough food are " completely false.'' " At no time did we believe that anyone's health or safety was at risk,'' Healy says. 's complaints about the group home paled, however, amid news emerging from Bancroft's main campus in the Philadelphia suburb of Haddonfield, N.J. - news that convinced she'd been right to bring her son home. A week after getting back to Teaneck, received a Bancroft yearbook and found inside a dedication to Goodman, a 14-year-old with severe autism who had been together with Nick at The Lindens, a special unit that stabilizes patients in severe behavioral crises. Nick had moved on to a less-restrictive setting. Matt had died in February. His death, after months in arm restraints and a helmet, prompted the state to launch a top-to-bottom inspection of the Haddonfield campus. In June, the health department imposed the largest penalty ever levied in New Jersey against a long-term care institution, $127,700. Bancroft appealed the fines and the findings, " strongly denying'' the allegations of abuse, its spokesman said. The appeal is still pending. [see Monday story about the maelstrom that arose around Bancroft after Matt's death, and his mother's trauma.] had looked upon Bancroft as a potential lifelong home for Nick when she left him there at age 11. Now she concluded she could never take him back. Her life had changed course twice - the day Nick was born, and the day her husband died. Now it turned again. She wrote in her journal: " What will we do with Nick at home?'' At home, the boy who had slept soundly now startled and woke at the least sound. The boy who had dozed through his fingernail trimmings now attacked anyone who even attempted it. hired a carpenter to build Dutch doors throughout the house so she could safely watch her son but keep him at bay if he became violent. Nick can't open a locked door. And the trips to 's that had been a pleasant routine, first at home and then when visited Dunhill, now sparked rage. One day, on the way home from the drive-through, Nick burst into loud, angry sounds and twisted his fists into his forehead, as if they were screwdrivers. The next day, going to the drive-in, he hit his head hard with his hands. He bit Armstrong when she tried to undo his seat belt. He kicked so hard, he broke off a toenail. A week later, the trip provoked a crisis. 's logs describe him repeatedly slamming his body against the seat belt. He stomped his feet. Then he started pounding his head - hard. When put her hands between his fists and his head, Nick gouged her arms, then bit her over and over. Armstrong drove straight to the hospital. Her son's bites didn't need stitches, but a doctor prescribed antibiotics. What was in Nick's mind? He couldn't say, and they couldn't know. But a psychiatrist who has treated Nick since early childhood made a presumptive diagnosis: post-traumatic stress disorder. After that, neither woman forced the issue. Nick handed them his shoes a few more times, a signal he wanted to go out, and those trips were uneventful. Gradually he stopped asking. The last time he left the house was mid-November. The question she had asked in her journal - " What will we do with Nick at home?'' - became more desperate. What is going on in Nick's mind? What is it like to be autistic? Anyone who has spent time with Nick, and caught a shy sidelong smile, is intrigued. Clearly, he's not empty inside. Most experts regard autism as a disorder affecting many physical systems, with manifestations far beyond the popular view of a child who avoids eye contact and social interaction. Many people with autism have problems sleeping, eating, and maintaining a constant body temperature. Some don't react to sensory signals the way others do; for example, pain may not produce the desire to stop it. Nick doesn't seem retarded. He may have hearing or vision problems, but it's impossible to tell - he won't sit still for an examination. He evidently remembers how people look, because he recognizes them years later. When he was 3, he could say " Baby mad!'' " I eat fries,'' and " No meat!'' but the language " seemed to burst from him'' in emotional situations, rather than intentionally, according to old records. He loved " Sesame Street " ; his vocabulary included the names of Ernie, , Elmo, Grover, Telly, , Harry, Bob, Alice, and Owl. Now Nick doesn't say anything. But he does communicate. At least a dozen times a day, he lopes into the kitchen, barefoot in a bright turtleneck and elastic-waist pants, in search of a pacifier. His moves are agile, his long fingers nimble. When he can't find a pacifier in the usual place, he proffers the laminated picture of one his mother has stuck to the shelf with Velcro. When he wants cereal, he presents a bowl and spoon. When the video needs rewinding, or the CD changing, Nick gently tugs at 's or Armstrong's hand. With his medications fine-tuned, Nick has become better at ordering his thoughts. He is mostly toilet-trained again, but when he wets himself, he remembers to take off his clothes and get new ones. He needs help to put them on, because he is not good at two-handed tasks. " He doesn't speak our language,'' says his grandfather, , a retired pediatrician, " but the thoughts have to be in some kind of language.'' Nick was affectionate as a young child, he says, and would climb into his lap. Now " living with Nick is like a roller coaster,'' his grandfather says. " Nicky is going to need care all his life, and can't do it. It would destroy her life.'' Nick adores his grandfather. When he visited in December and sat talking with a guest, Nick interrupted three times. First he brought saltines and a bowl, and handed them over expectantly. His grandfather put a few in the bowl for Nick to eat. Nick shifted from foot to foot, watching the conversation and chewing his crackers, before asking for more. Then he went to the kitchen and came back with a box of oyster crackers. In the evening, as his grandfather lay on the pullout sofa, Nick came and sat in a nearby rocking chair. The old man dozed and woke up again, and Nick was still there. Beneath the furrowed brow, his dark eyes kept watch. At the end of last summer, needed a plan for Nick. And he needed more than custodial home care. In New Jersey, every child, even one as handicapped as Nick, is entitled to a " free, appropriate, and public education'' until he turns 21, at taxpayer expense. Teaneck had terminated its contract with Bancroft but was still responsible for Nick's education. In August, enrolled Nick in a special program for adolescents at the s Center for Developmental Disabilities at Rutgers University in New Brunswick. It specializes in tough cases like his. One key to working with such children is to understand what they're trying to communicate through their aggression or self-injury. They may be trying to get someone to leave them alone, or to get away from demands made upon them. Alternative communications, such as gestures, pictures, or devices that actually speak for the child, can be developed. But opinions diverge on how to handle the violence until the alternatives are in place. Some favor physical restraint. They stop the violence by overpowering the child, using bearhugs or even " four-man takedowns,'' in which one person holds down each limb. Or they block the injuries with immobilizing splints or helmets. They may also use " aversives,'' intentionally unpleasant consequences, when the behavior starts. Nick received many takedowns at Bancroft, which the school says had approved as part of his " treatment plan.'' acknowledges that when Nick was younger, she had used aversives - squirting his mouth with lemon juice - to try to stop Nick's biting. Another approach relies on positive techniques, not force or restraints, to encourage good behavior. For anything except a dire emergency, the caregiver backs off, leaves the child alone, or tries to redirect him. " This approach trusts that Nick is doing these things for a reason, not to be 'naughty' or to intentionally misbehave,'' says Dana Henning, an education specialist who has been a consultant on Nick's case. " He should no more be punished for aggressing than a person in a wheelchair would be punished for not getting up and walking. They are both responding to a disability.'' Nick's fearfulness and anxiety, felt, were a result of previous attempts to force him to do things or to punish him for not doing what was wanted. As she learned more about Matt Goodman's death after months in restraints, she became more committed to using the positive approach with Nick. His first visit to the s Center lasted one hour. He appeared to enjoy himself. But for that precious hour, and Armstrong spent three hours cajoling, tempting, and finally forcing him into the car. Then he turned and tried to claw his way back into the house. Armstrong ended up covered with bruises. The round trip to New Brunswick was his last drive for months. The next day, he resisted even more fiercely. Rutgers sent staff to the house, hoping to ease Nick's transition. They taught him a gesture - arm flung out, hand up like a crossing guard stopping traffic - to signal " go away.'' Nick adopted it readily. They tried to entice him out with french fries. No dice. Finally, they urged to empty Nick's room of all the things he enjoys - the video, the blankets, the pacifier, the food - so he would have no reason to stay inside. She objected. It was the only place he felt safe, she reasoned. How could she take that away? Next, Teaneck lined up a school bus. For several October mornings, the yellow bus pulled up outside, with a driver and an aide ready to take Nick to the s school. Nick saw it through his bedroom window. But even if he remembered how he'd once enjoyed riding the bus to school, it didn't matter. He wasn't going anywhere. Neither Armstrong nor the Rutgers staff could induce him. Nick was intractable. He bit his hands, hit his head, and lunged at those who would force him. Once, he smacked a s staffer who failed to acknowledge the " go away'' gesture. The contract with s was terminated for lack of attendance. then asked the district to provide instruction for her son at home. If he wouldn't go to the teachers, she reasoned, the teachers could come to him. The doorbell rings at 7:30 p.m. It is a blustery winter Thursday, with spaghetti and pizza from the Coliseum diner on the menu at the household. Nick has spent the day in the living room, spinning his rattle and keeping an eye out the window. His swirling beads and open-throated groans create a steady drone. Now he sits in his bedroom, occasionally taking a bite. works on her salad and ignores the doorbell. The bell rings again. Then comes a knock. sits, still and tense, at the kitchen table. This is supposed to be the start of Nick's in-home instruction, the resumption of his education after the problems at Bancroft and s. But has no confidence that Teaneck's teachers will use the approach she wants. She refuses to allow the teacher into her home. A day earlier, the school district's psychologist had visited with two young men hired to teach Nick. , a small woman, says they intimidated her. When they entered Nick's room as a group, touched his hand and arm, and followed him to the bathroom, they showed their insensitivity to his needs and educational recommendations, says. She later tells police the teachers looked like thugs. " Nick seemed paralyzed with fear, his eyes black with terror and repeatedly darting from one man to the other,'' she writes later. She is troubled by their promise to get Nick out of the house within a week. She says they didn't answer when she asked where they would take him once he was out. When one teacher described injuries he'd received while removing another child from his home, 's worries grew. The evening hour for instruction was also unorthodox, she thinks. Through her attorney, she'd requested more time before home instruction started. Nevertheless, the doorbell rings. The next morning, Armstrong finds the gate in the back fence ajar. panics. She sees her worst nightmare. The district, she fears, intends to remove Nick and put him in another residential school where he can be tied down for aggressive behavior. That will be a death sentence in his fragile mental state, she feels. If she doesn't go along, she fears, they will tell the Division of Youth and Family Services that she is neglecting Nick and have him forcibly removed. In 's isolation, has the line between protectiveness and paranoia become blurred? " I am shocked,'' Pozensky, the Teaneck special services director, says when told of 's fears months later. " Under no circumstances is this school district going to - or would any school district - attempt to force or in any way harm this child. Absolutely not.'' That Friday, visits the police and tells them of her fears. She tries to contact her attorney. Puffy-eyed from crying, she seeks help at Assemblywoman Loretta Weinberg's office. She phones and visits The Record. The weekend passes without incident. But after the police invite school officials to the station to discuss the situation, the district threatens with a defamation suit if her " extraordinarily inappropriate actions'' do not cease. considers filing her own complaint. It is a bitter impasse. She disenrolls Nick, thinking she will home-school her son and bypass the district, then changes her mind. She considers moving, but isn't certain that would improve their circumstances. She writes scores of letters. Nothing changes. No teacher has tried since then to engage Nick's attention. He has stayed at home - spinning his rattle, watching his videos. In the high-ceilinged hearing room of the State House in Trenton, sits in the front row of spectators. Two Assembly committees, meeting jointly, are to vote this winter afternoon on two bills that would limit the use of physical takedowns, splints and ties, face squirts, and other similar techniques to control autistic and brain-injured patients. One bill is called " 's Law'' - named to honor the boy with autism whose life ended a year earlier. His mother, Janice Roach, has become a close friend of 's. They sit together, awaiting their chance to testify. 's crisis with Nick has linked her to a larger cause: eliminating the use of restraints and aversive treatments in everything except emergencies. And her struggles to care for her son have connected her to other parents. The tight group of mothers who've shared parenting's worst experiences embraces her as she arrives. The huge turnout catches the Assembly staff by surprise. Lobbyists and advocates clog the aisles and line the wall. Several adults in elaborate wheelchairs attend with their aides. Parents wear buttons with photos of their disabled children. Amid the hubbub, looks serene, almost nun-like. Her gray hair is clasped in a ponytail, and she studies the legislators quietly. She's nervous, but has planned her remarks carefully. She is introduced by Weinberg, the Teaneck Democrat who chairs the Assembly Health Committee. " I owe a personal sense of gratitude to Dr. ,'' Weinberg says. " She did more research and turned up more inappropriate actions than the bureaucracy did. She helped steer us onto this course. Thank you for the education you've provided.'' tells the panel her son " has been subjected to restraints and aversive techniques since he was only 3,'' and they have never decreased his aggressiveness or self-injury. " What do restraints teach? They teach terror to already terrorized individuals. They also teach helplessness, hopelessness, powerlessness, intense frustration, and rage,'' she tells the legislators. " I've seen all these feelings in the eyes and the face of my own son.'' The techniques used on Matt and Nick, she says, " are not permitted to be used in any other living population - not political prisoners, not even animals.'' Without legislative action, " the lives and well-being of those with disabilities will continue to be in great jeopardy.'' She closes with a plea to the Assembly members to pass the more restrictive of the bills, so that restraints will not be used in everyday situations. The hearing continues for hours, through dozens more witnesses. Several parents speak emotionally in favor of restraints, saying it is the only way their autistic children's behavior has improved enough to let them live outside an institution. At its conclusion, the lawmakers approve the weaker of the two measures, which permits continued use of restraints in treatment of the developmentally disabled. is disappointed. The decision, she says, sends New Jersey backward. Her friend, Matt's mother, decides not to allow the new measure to be called " 's Law.'' Nick " is in a very difficult situation,'' Dana Henning, the consultant, writes in a report summarizing his medical and school records and making recommendations to Teaneck for his educational program. " He is like someone who has painted himself into a corner and cannot get out. .... It is difficult to imagine the frustration of being in ' situation and not being able to tell people what you need or 'what hurts.''' His developmental disabilities and his autism may be compounded by such common mental conditions as depression, agoraphobia, or obsessive-compulsive disorder, she says. He is wary of contact with more than one person at a time, because he needs to watch each one. He reacts poorly when he is kept waiting. He is not very trusting. And he's growing. Over the winter, his voice started to deepen. They celebrated his 14th birthday with balloons and cake in January. Armstrong estimates he is now 5 feet 6 inches tall - and bigger and stronger than his mother. Armstrong, who at 5 feet 8 is bigger than the two others, still handles most of Nick's daily care, helping him bathe and dress, crushing his psychiatric medications and stirring them into baby-food plums. Her Quaker patience and tolerance help get her through each day: She musses his hair, tickles him, and gives him a friendly pat when he does the right thing. is not as physical. She cares for Nick through her advocacy, spending much of her time alone at her computer and telephone. The months of inactivity, with no effort to compel Nick to leave the house, seem paradoxically to have benefited him. He's calmer now. In mid-March, when a visitor stopped by for 's 52nd birthday, Nick walked out to the kitchen to see who it was. said she couldn't remember the last time he attacked her or Armstrong. Nick probably will never be a " productive member of society.'' Yet he raises some of life's most profound questions, without ever saying a word. What is it to be human? What makes a life worth living? What are our obligations to our children? For , Phil Coulter, an Irish folk singer, offers some answers in a song about his own mentally retarded son. She listens, as she drives to Hackensack's fast-food outlets to pick up lunch: " Scorn not his simplicity " But rather try to love him all the more. " Only he knows how to face the future " Hopefully, surrounded by despair. " He won't ask for your pity or your sympathy, but surely we should care.'' On the second warm day after a hard winter, the sun is melting piles of old snow. Armstrong is alone at home with Nick when he comes into the kitchen looking for crackers. She takes a minute getting to him, and his eyes drift out the back door, which has been left open to let the sun stream through the glass storm door. He walks over and stares out at the yard, with its bird feeders and ivy-covered fence. Then he rattles the handle. Armstrong lifts the latch and holds it open. Barefoot and pale, Nick walks out into the back yard. It is his first step outside in four months. He sits down on the glider. He glances around. He feels the breeze. And then he shakes his head quickly, as if in disbelief. The world is bright and new. Nick smiles. TOMORROW: Respected treatment center shaken by child's death. Lindy Washburn's e-mail address is washburn@... 6376985 Quote Link to comment Share on other sites More sharing options...
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