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When an autistic child grows up Recently, Adam Davis's mom, Nancy, took him to a '50s concert at a country club in the area.  Erika Maynard, Director of Day Programs at the Center of Hope in Southbridge, and Adam Davis share a moment at Elm Hill Farm in Brookfield. At first, Adam appeared agitated. He becomes easily agitated in crowds (elderly folks and children can especially intimidate him); but this time he scored a deck of cards and sat cross-legged on the floor between the dinner tables sorting them. That made him happy for the night, as it often can. For years, cards have occupied hours of his time, and he has some 30-plus decks in his room. If Adam visits your house, he'll inevitably rifle through your drawers and cupboards looking for decks of cards. If there aren't 52 in the pack, someone had better fix it quick. Other things make him happy, too. He'll crack you up with a knock-knock joke he's made up: "Knock, knock." "Who's there?" "Nancy." "Nancy who?" "Nancy Davis!" He'll yell random phrases such as "get out of your pants!" that can bring you to hysterics (or embarrassment). He carries around items such as key chains for weeks on end, sometimes stuffing them into a sock. He loves fans, and turning on lights and clicking on hundreds of files on a computer ("triangles," he calls them). He'd eat hamburgers for breakfast, lunch and dinner if he was allowed to, and he likes cookies and brownies a lot, too. He gravitates to the Catholic mass and cartoons on TV, listens to '80s music and watches the movie The Big Lebowski — which he calls "the fuck movie" because the F-bomb drops so often in it. Recently, he and his mother took a trip to Overlook Farm in Rutland, and he fell in love with the pigs. But keeping Adam happy, and calm, is a challenge; and that is putting it mildly. Watching Nancy interact with her son for any length of time will simultaneously break and warm your heart. Adam suffers from autism as well as mental retardation — plus a few related and unrelated issues that include anger and an inability to control his bowels. His mom has been taking care of him since birth at their home in Charlton, with only a daily 8-3 respite provided by daycare workers. The task is immense and endless, and a glimpse into Nancy's life could make the most highly stressed individual feel guilty for ever having complained about petty problems. Calm, patient to a fault, intelligent and kind, she's grown and adapted to Adam's condition with quiet dignity and silent suffering.  Nancy and Adam Davis at the Hyland Orchard petting zoo. "I definitely do have periods of depression," says Nancy. "I have always had periods of depression. I think my way of coping is to escape mentally. Blocking Adam out is a form of survival because he repeats things over and over and over again. It drives you mad if you don't tune it out. And sometimes it does escalate. It's true." But Adam's 27 now, and Nancy finds herself stepping toward the most major decision of her life. For parents with severely handicapped children, there usually comes a time where they've got to put their faith in another caregiver — when their "kids" have got to move to another living situation for everyone's sanity. Adam has to move on so that Nancy herself can finally live. He is so ingrained in her daily existence that she has little separation from him; and he is an integral part of his sister Sarah's and father Rich's lives as well. "I have been alone for 12 years," says Nancy, who is divorced from Rich, who is remarried with two children. "I had one boyfriend after we got divorced, and to insert somebody in a situation with Adam is very hard. I have no life of my own, and yeah, in order to make a life with someone else it would be very hard on both to learn how to live with each other. I've learned it as he's grown, so I've been able to bend and learn how to deal with things." Sarah, Adam's sister, is 20 months his junior. She slid naturally into a protector/caretaker role with Adam, which laid the groundwork for her own career: She works at the New England Center for Children and is working on her master's degree in counseling psychology at Framingham State College. As with her mom, it's remarkable to watch her interact with Adam. "My mom has sacrificed a lot, and continues to," says Sarah. "It takes an immense amount of patience. My brother is the most influential person in my life just because of the patience he's taught me and I really appreciate the life's lessons I've learned from him about accepting others. It does make me sad to know that my mom doesn't necessarily have a life of her own. She works every day and works more when my brother gets home. She never ever gets a break. We have conversations about Adam because ultimately, when my parents are gone, the role falls on me. And the waiting list for places to live is long. I'm trying to encourage her to start looking for a place for him because finding a good place is difficult."  Adam Davis has had enough of the photographer while at Elm Hill Farm in Brookfield. He can become physically aggressive on occasion, head-butting, punching and biting. Years ago, when a man came to Nancy's house to pick her up for a date, he hadn't been in the doorway five minutes before Adam was in his face, yelling. "He picked him up by the neck off the floor," she recalls. "It didn't end that relationship instantaneously, but I have never forgotten it. I just decided then that I cannot do this right now. It wasn't fair to Adam, and it wasn't fair to me." Just as Nancy can "lose it," so can others who care for him for any length of time. A couple of years ago when Nancy headed to Vermont to visit her sister, who was dying from cancer, Adam was staying at another caretaker's home. He wasn't sleeping, and he was "going nuts," she recalls. "Finally, this person called another person and said, 'Can you please talk to Adam and try to calm him down?' As she went to hand Adam the phone, she said a few choice words to Adam because she was tired and angry. The person on the other end heard it and reported it. I had to come home from Vermont and pick him up. But, I've lost my temper with him, too, and said things that I've regretted. It's human. There was this big investigation and she lost her ability to work with kids in Massachusetts." Adam's inability to truly relate to others' emotions, says Sarah, can often be as maddening as it was on the day of her grandfather's funeral: "I wanted to just say, 'Adam, do you have any idea what is going on? Are your problems so problematic that you can't just put the friggin' gifts up on the altar with me?' Everything is just such a production. But I don't want to paint a picture that he is a monster. He has great qualities. But it's moments like that. The thing with autism is that they are self-absorbed. You might be crying next to them, and they say, 'I'm hungry.'" As a parent, it's difficult enough to even tune in to the possibility that your child isn't developing "normally," never mind accept it when it becomes apparent. Everyone's got a different take on when your little boy or girl should be walking and talking, or how and when they should drool or utter a word. For new parents Nancy and Richard, it would take a good year or so to fully acknowledge there was something wrong with Adam; 10 years to hear the words "autistic tendencies"; 19 years before he was called "clearly autistic." What is autism? While the term "autism" has been recognized as a complex of symptoms for decades, it is only more recently that awareness of its shades and variations has filtered out to the general public. The movie Rain Man portrayed one image of a functioning autistic adult. In reality, there is a wide range of behavioral characteristics and degrees of severity to what is accepted by the medical community as autism. Other diagnostic categories such as Retts Syndrome, Child Degenerative Disorder and Asperger's Syndrome are recognized as closely related or overlapping. The fundamental phenomenon, according to Sue Loring of the Autism Resource Center of Central Massachusetts, consists of a "neurological disorder characterized by deficits in communication, socialization and imitation skills." A number of other traits are also characteristic, such as a severe need for order and routine. The Web site, ourspecialkids.org, expresses it this way: "Autism impacts the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resistance to changes in routines. Individuals may also experience sensitivities in the five senses of sight, hearing, touch, smell and taste." Increasing autism awareness has led to a corresponding increase in its frequency of diagnosis. In 1985, when Loring's son Edward was born, the incidence level of autism was recognized as being about four in 10,000. Five years ago, her organization expressed it as one in 500. "Now, it's one in 150 children who have autism in the country," she says, "and locally, I read recently that in this state it is one in 130." Frustratingly, the diagnosis tends to be largely descriptive, and implications for "treatment" are elusive. Author and animal behavioral scientist Temple Grandin — an autistic adult — has provided great insight into the ways in which she believes her brain processes information differently from "normal" people and has served as an inspiration to those who believe in the potential value to society of individuals with varied intellectual makeup. The normal autistic individual has a more difficult path in life, however, marked by severe difficulties in "functioning." As awareness of the phenomenon grows, and as pediatricians and parents pay closer attention to warning signs, scientists are desperately trying to figure out the cause and agencies are scrambling to keep up with the demand for services and information. Today, Loring says, the Resource Center gets calls from parents of children as young as 13 months old, looking to tap into their resources. "It's getting picked up earlier and earlier," she says, "and it improves the outcome for the child. Studies show that early intervention is your best bet, but it has to be intensive." o |
Nancy endured, as she recalls, a "pretty normal pregnancy." He was overdue by 18 days, however, and when induction failed, he was born by C-section on Jan. 28, 1980. "He was only five-and-a-half pounds," says Nancy. "So they were watching him from Day 1. They put him in an intermediate nursery, and he was having blood sugar issues. He was shaking a lot. My mom told me later that the first time she saw him — she had had five babies, and she knew something was going on." After a week in the hospital, they finally headed home, and the signs that things weren't quite right were apparent to Nancy early on. It was nearly impossible to nurse him; he'd stiffen his body, push straight up and scream. "He was such a challenging baby," she recalls. "He never slept. He had projectile vomiting constantly. He was screaming all the time. I didn't sleep for a long time." That first year revealed more warning signs that are easy to recognize in hindsight. Rich has a small picture of Adam taken at a photographer's studio during that time. His hand is under the blanket holding Adam up because he couldn't sit up. "He was delayed in learning to stand up and walk," says Rich. "He was even more delayed in his speech. This was the more heartbreaking experience over time. There is nothing more frustrating than trying to tell someone something and the person doesn't understand. It was Nancy who recognized his delays over time." Nancy had a book that highlighted developmental milestones, and he was missing them at the same time that she watched her friends' babies hitting them. Adam just wanted to sit on her lap and look around, she says. He didn't roll over, crawl, walk or talk.  At Hyland Orchard "I remember asking if he would catch up," he says. "When the doctor said, 'not totally,' I wanted to know how much he would be delayed. I didn't understand what it would mean for all of us, but I suddenly understood as a parent that not everything is under our control, and that some of our life's plans and expectations hang on assumptions that we probably had no right to make." Nancy wasn't shocked; and was even relieved to receive a diagnosis that finally attached a name to Adam's behavior. While she occasionally battles depression, she tends to have an accepting philosophy about life. "That's how I've always been," she says. "I'm a quiet person and I don't depend on a lot. I guess my expectations have never been really high. .... It's just that I depend on myself — that is what I'm trying to say. I've never had a big plan in my life, like this is what I'm going to do when I'm 30, et cetera." Rich admits to having had a hard time at first, but his denial and depression gradually dissipated. "Later, I became more faith-filled because of the challenges," he says, "but at first, I felt like Adam's disabilities were a punishment for my own selfish attitude toward life." At a year-and-a-half, Adam was able to pull himself up to stand, and by 19 months, he could walk. By age three, he would use his voice to yell and would frequently cover his ears, but he seemed so oblivious to sound that they had his hearing tested. He didn't follow verbal directions and his scores were below a six-month level in language skills. He "prefers solitary play, has a short attention span," reads a report from that time by the Early Learning Center in Sturbridge: "skills are severely delayed, especially cognitive and language skills." His parents wanted him to go to a normal preschool, at first placing him at St. Joseph's in Leicester with his sister. But when they tried to place him in a program at the Mason Road School in Dudley, an arbitration battle erupted with the Special Ed. Director of the school system. Ultimately, the Davises won after a stressful fight. Other programs followed, including the Mercy Centre in Worcester, Dawning Place at Oxford Middle School and a year-round program at the Leicester High School. "He was little and didn't have behavior issues yet at all," says Nancy. "He was really easy-going and fun and happy. He was just slow, and he never played with other kids. That's another trait of autism. They call it parallel play — you know, two kids playing with a truck next to each other but not interacting." Puberty brought a marked change in behavior, however. Once a fairly easy-going kid, Adam turned angrier in elementary school. It was also the start of bowel issues that have gradually resulted in him losing full control of them. He started to suffer seizures as well. "Two things happened after puberty," says Nancy. "The anger increased and the happy kid disappeared. And around 13 or 14 — and this is a little graphic — his bowel movements became huge. He would go longer and longer between bowel movements. They were so huge that they were not flushable. I had to cut them with a plastic knife. One time I was at a party and he had a huge bowel movement in the toilet, and there were no plastic knives to be had, so I had to pick it up and put it in the trash. So I have lost my sensitivity to the whole thing long ago." Although he has "attractions," Nancy says, they could never manifest physically because Adam would never allow himself to get close to a person. "He would never be able to tolerate having someone close to him," she says. "He does like girls better than guys, though. It's so funny — this morning, he's yelling at me when I am getting ready to go. And the woman who picks him up in the morning he loves more than anybody right now. She's a pretty young thing. He's yelling at me as he's going down the steps, and I hear the door open to the van and he goes, 'Hiiii, Melissa.' His tone is so funny." Rich and Nancy divorced in 1992. "Adam became the focus of our family," says Rich. "Sometimes this can be a unifying force and in other cases this can be a separating force. In our case, it did both of those things at different times. Nancy and I ended in divorce, but I don't see Adam as the reason that it happened that way." He says that he would like to see more of Adam than he currently does, but his two young children are fearful of their half-brother. Today, Adam's day starts at 5:30 a.m. He gets up, walks to the top of the stairs and yells, "Bathroom!?" "Yes, Adam, go to the bathroom," his mom replies. If he doesn't ask and she doesn't answer, he won't go (he is able to urinate on his own); and she and his caretakers have to remind him throughout the day. "He understands a lot," says Nancy. "He is more intelligent than he appears. It's hard for him to express himself. He knows a lot. He can operate machinery. Computers. I've been told he's just borderline-retarded. It's the autism that affects his ability to function in this world. I just wish he could find some peace." Linda Cournoyer is the family
support area director for The Seven Hills Foundation, making her the coordinator for Adam's respite program and the flex-funding (the reimbursement for medical supplies and additional respite hours) that Nancy gets from the Department of Mental Retardation. She not only helps Nancy and knows Adam well, but she empathizes with their situation from personal experience: Her own daughter Denise — now 37 — has disabilities, and she had to send her to live in a group home when she was 13 because of extreme behavior issues. "Between the Center of Hope Day Habilitation Program, Seven Hills and the DMR, we give her what she needs to keep Adam home," says Cournoyer, "but we all know that down the road she's going to have to find a living situation for him. That will be so difficult. When Denise went off, it was like nobody needed me. It was devastating. You don't know what to do with your life because your life has been Adam or Denise or any other kid with disabilities." Sarah agrees, saying she sees not only her mom, but many families struggle with the same decision: "Parents could be the parent-of-the-year and still feel like they failed," she says. "They feel guilt that they even had thoughts about sending their child to a residential setting. It just further shows how selfless they are, and what sacrifices they made for their kids. You cannot imagine the accommodations that parents have to make for these kids." Sue Loring, the director of the Autism Resource Center of Central Massachusetts, is familiar with Nancy's dilemma, as she faces it with her own son Edward, who is cognitively impaired and still lives at home at the age of 22. "He'll be in a shared living situation," she says of the likely outcome: "It's where another family sort of fosters them and they become part of another family that isn't worn out and tired. But I just know when I breathe my last breath, I will say, 'Who is going to take care of Ed?'" And that's what Nancy asks. Who is going to take care of Adam? Who is going to understand his quirks and know how to quiet him? Who will deal with administering the frequent cleanings both he and his caretaker have to endure because of his bowel situation? Who's going to care? Waiting lists are long, and options are not plentiful, especially for a hard placement such as Adam. The staff turnover rate at group homes is high, and being in shared living isn't necessarily ideal, either. "I'm going to have to pick one," says Nancy. "And it'll be within the next two years. That's what my plan is. I mean, we do overnights every week and that was a big deal because eight years ago he couldn't tolerate one overnight and now I get them all the time. So I think if we do it gradually, it'll be better. I'd rather do it under my control than having him plunge into that situation." Working at home, which Nancy has done for the past seven years as a freelance graphic artist, has reduced her stress level significantly; but she understands that it is time for her to have a life of her own and believes that it is in his best interests as well. "I can't do this forever," she says, "because I will die someday, or there will be a point where I cannot physically handle it. There have been times where I had pneumonia and I had mono, and it was very hard just cleaning him up in the bathroom. It's normally hard for a parent when a child leaves. But it's going to be doubly hard because I know he doesn't want to leave. He wants his life to stay like this forever."o Charlene Arsenault may be reached at
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