Freelance Writer
Raising Adam
11.30.07 | 1 Comment

As it appeared on the cover of Worcester Magazine, August, 2007

Recently, Adam Davis’s mom, Nancy, took him to a ‘50s concert at a country club in the area.

At first, Adam looked agitated, as he can easily become in crowds. Elderly folks and children can especially intimidate him. But 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, 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. 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. 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 you let him, 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 called the “fuck movie” because the F-bomb drops so much in it. Recently, they 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 at once break and warm your heart.

Adam suffers from autism as well as mental retardation, and a few related and unrelated issues that include anger and inability to control his bowels. His mom has been taking care of him since birth at home in Charlton and for a majority of the time. The task is immense and endless, and a glimpse into Nancy’s life could make the most stressed feel guilty that they had ever 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 some silent suffering.

She’s “lost it” a few times with Adam, and knows when it’s escalated to the point where he should stay in his room. It usually happens when she’s overtired, and he just won’t stop yelling in her face. Echolalia, they call it – when you say something and the autistic person repeats it endlessly back to you.

“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. To insert someone new into this situation is much harder than growing with it.”

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. Those “kids” have got to move to another living situation. Adam’s got to go on so Nancy can finally live, as he is engrained in her daily existence so much so that there is little separation; he is an integral part of his sister Sarah’s and father Rich’s 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 20 months his junior, slid into a protector-caretaker role with Adam, which laid the groundwork for her career, as she works at the New England Center for Children and is working on her Master’s in counseling psychology at Framingham State College. Like 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.”

In November, when Sarah gets married, she hopes Adam will be able to be in the wedding. No one can predict if he can fulfill the role he’ll be assigned in the festivities. Last year, at their grandfather’s funeral, instead of bringing the gifts up to the altar for the mass (as was the plan), Adam head butted Sarah in the church.

He can, on occasion, head butt, punch and bite. 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 when Adam was in his face yelling. “He picked him up by the neck off the floor,” she says. “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 caretakers home. He wasn’t sleeping, and “going nuts.” “Finally, this person called another person and said, ‘Can you please talk to Adam and try to calm him down?’” says Nancy. “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.”

His inability to truly relate to others emotions, says Sarah, can be 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.’”

Having afflictions like Adam’s, and anyone having to take responsibility for them hardly seems fair. As anyone with an autistic or handicapped child will tell you, it drastically changes the scope and view of your world – for worse, but for better.

@DROPCAP: It’s difficult to even clue in to the fact 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 realize there was anything wrong, and 10 years to hear the words “autistic tendencies.” Nineteen before Adam was called “clearly autistic.”

Nancy endured, as she recalls, a “pretty normal pregnancy” with Adam. But it was difficult from birth; by the end of January, 1980, she was overdue by 18 days and doctors finally induced her. It didn’t work, and Adam was born C-section on Jan. 28. “He was only five and a half pounds,” says Nancy. “So they were watching him from day one. 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, she, Adam and Rich 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,” says Nancy. “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 question marks that are easy to see now in hindsight. Rich has a small picture of Adam taken at a photographer’s studio during the 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 was also watching friend’s babies hitting those milestones. Adam just wanted to sit on her lap and look around. He didn’t roll over, crawl, walk or talk.

The delays prompted Adam’s pediatrician to set up a meeting with a neurologist before his first Christmas. For Rich, it was startling and devastating when he found out his son was diagnosed with microephaly and was probably going to be mentally retarded. “I remember asking if he would catch up,” says Rich, who was a music teacher at the time. “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; the diagnosis tagged a title to Adam’s actions. She does battle depression, but 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. Oh, that doesn’t sound too good, does it? 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, etcetera.”

Rich admittedly had a hard time at first, but his denial and depression 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 up to stand, and by 19 months, he could walk.
By age three, he used his voice to yell and would frequently cover his ears. But Adam seemed so oblivious to sound that they tested his hearing by calling his name from behind, also ringing bells behind his back. Both times, he responded immediately. But he didn’t follow verbal directions and his scores were below a six month level in language skills. He “prefers solitary play, has short attention span, skills are severely delayed, especially cognitive and language skills,” read a report from the Early Learning Center in Sturbridge.

They wanted him to go to a typical preschool, at first putting him at St. Joseph’s in Leicester with his sister. But when they tried to place Adam at a program at the Mason Road School in Dudley, it erupted in an arbitration battle with the Special Ed Director of the school system. Ultimately, the Davis’s won after a stressful fight. “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.”

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. Puberty proved to be a marked change. Once a fairly easy-going kid, Adam’s nature turned more angry 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, too.

“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 – um, 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.”

Though he has “attractions,” Nancy says for Adam they would never manifest in a physical thing because he wouldn’t allow himself to get close to a person. “He would never be able to tolerate having someone close to him. 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.”

In 1992, Rich and Nancy divorced. “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 I happened that way.”

A doctor finally called Adam “clearly autistic” in 1999, putting further titles on what the Davis family already knew. His “toilet” issues, too, got to the point where Nancy was having trouble balancing work because of such things as trips to the gastroenterologist.

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. 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. When Randy [their dog] had to go to the hospital, I had to get Adam out of bed. I said, ‘We have to take Randy to the hospital.’ He asked me what was the matter. I said, ‘Randy doesn’t feel good.’ Adam stayed in the waiting room there. They took him out of the side door when we left. They wanted to cremate him, but I asked to take him. They wrapped Randy up like a mummy on the gurney and took him to the car. Adam didn’t say anything until we were almost home. He pointed at Randy and said, ‘All gone?’ I said, ‘Yes, Adam, he’s all gone.’ 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.”

@DROPCAP: Servicing people with disabilities, the 7 Hills Foundation is the largest private non-profit agency in the state. Linda Cournoyer is the family support area director for 7 Hills, blanketing the south valley area. That makes her the coordinator for Adam’s respite program and the flex funding (which is 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 can relate. Her 37-year-old daughter Denise has disabilities, who she had to send to live in a group home when she was 13 because of extreme behavior issues.

“Between the Center of Hope, 7 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. 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.”

Services for the disabled after the age of 22 are vastly different than when they are for “education age.” Not only is Nancy craving a life of her own, but financially, she has had to adapt to freelancing (she’s a graphic artist) and gets her health insurance by belonging to the Chamber of Commerce. Adam’s is covered by his dad’s insurance, and MassHealth kicks in when that stops.

Sue Loring is the director of the Autism Resource Center of Central Massachusetts, which is funded by the DMR. The Center is a portal to help those affected by autism sift through services and navigate information. A trained RN, Loring had a long, protracted struggle to get her son diagnosed. Edward, who is now 22, lives at home still because his cognitive impairment is such that he’s eligible for services through DMR. But 22 being the magic age, Loring is seeking a suitable living situation for him.

“He’ll be in a shared living situation,” says Loring. “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 stool cleanings he’s got 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 then having him plunge into that situation.”

Working at home, which she has done for the past seven years, has reduced the stress level greatly for Nancy. But, as she’s given a good portion of her life to her son, it’s time to have one of her own. “I can’t do this forever,” says Nancy, “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.”