By Carolyn Swanson

One day this winter, at about 5 o’clock, three roommates had arrived home from work and were getting ready to sit down for dinner at their new apartment on the second floor of a house owned and managed by HARC. David was unwinding in front of the TV. Saarin greeted her mother who had just stopped in for a brief visit. Pretty soon everyone joined Lewis in the kitchen where he was talking with Sarah, the program coordinator, as she cooked.

It takes less than five minutes of talking with David, Saarin and Lewis to see how happy they are to be here, how proud they are, how much they like each other and Sarah. And in case you hadn’t been able to see it, they tell you, "We love it here."

David, Saarin and Lewis are the first to participate in a new concept in supportive group living developed by HARC, that offers a level of support not typically available for an apartment situation. Dr. Stephen Becker, executive director of HARC, explains how it works, "This program comprises two apartments in a two-family house in West Hartford. On the first floor are two individuals with rather substantial support requirements, but who are better suited to a small environment than to a 5 or 6-person group home. The program was initially conceived to meet the needs of these two individuals, by the way.

"On the second floor, we have people who are rather skillful, but at this point lack the independence to be on their own in an apartment with part-time help.

They need to have people around. They’re not yet ready to be alone at night. So we have staff there before work, after work and on weekends, and when help is not available upstairs, the 24-hour staff downstairs serves as a back-up for them.

Dr. Becker, adds, "We try to group people with like abilities. Many parents who feel their child needs a lot of supervision ask for a placement in a group home. But group homes are tending to accommodate people with greater levels of disability."

Late in 1999, the Department of Mental Retardation, in consultation with HARC, identified three HARC clients as good candidates for the second floor apartment in this program. Suddenly three families had decisions to make.

Lewis S. first moved into a HARC group home back in the early 1980s, and since then has lived in various supported living situations. Lewis’ mother is now elderly, and his sister has taken on the role of Lewis’ guardian. For her, the decision to move to the new apartment was an easy one, "He actually has more assistance than he had before."

David was quite content living at home with his mother, Patty. He was very active and, with his strong verbal skills and sociability, enjoyed many friends. "It took forever to get out of the grocery store," says his mother, "because David always meets people he knows." But about moving, she says, "I’ve always wanted David to live as independently as possible. It came a little sooner than I expected, though. As with a lot of big events in life, I don’t know if you’re ever particularly ready."

Saarin also was living at home with her mother, Diana A. "Over the past year," Diana says, "I was noticing that in various ways, Saarin was asserting her independence and wanting to do things for herself. She was becoming an adult.  Saarin is 22. I had been expecting it would happen later."

Diana continues, "Just a few months earlier, I would have said that I saw Saarin in a group home, and, like most parents I know, I wanted lots of supervision. When I heard that she was a candidate for this new apartment, I said ‘I don’t know that I think she can really do that. I’m not sure she’s ready for that. . .or if I’m ready for that.’ But I started thinking about it."

"No one ever feels really ready," observes Dr. Becker, who understands that this is a normal emotion for parents.

Lewis’ sister recalls that every time Lewis has moved over the years, his initial reaction has been, "I’m not moving." But she also recalls that with a little reassurance, he got used to the idea each time. She seems able to take this process in stride.

For the parents whose children were still living at home, the situation was more emotional. At one point, both had made the decision to say yes to the new apartment, but neither had told her child. "This was the hardest part for me," said Diana. "It was very hard. Because in my mind, I really thought Saarin saw herself living at home for the rest of her life very happily with me. I didn’t know what her reaction would be, and was worried."

Patty was also worried about telling David. "He had been the focus of my life for a long time, especially since my husband died. We were like Frick and Frack. Oscar and Felix. David had talked about moving into an apartment, but always as an abstract for the future. Yes, I was anxious about it. Would he think I was abandoning him?"

And what would either of them do if their child said no?

Diana didn’t want to tell Saarin too far ahead of the move. She found herself pointing out the new house and leaving broad hints. "Finally I couldn’t stand it anymore," said Diana, "I drove with her over there and said, ‘Remember how I told you HARC owns this house? Well guess who’s going to live here . . . You!’" And a celebration of excitement and hugs broke out in the front seat of the car.  "I had been sitting there chewing my knuckles. Her reaction was a total surprise to me. Later she would say ‘I’m a little nervous,’ but that day it was ‘I’m so excited!’ I was thrilled."

"One of the things that has astounded me," continues Diana, "is that Saarin always seems ready to take on the next step and, while she may be unsure or a bit daunted in a new situation, she never lets that set her back in any major way. Her attitude remains positive. She really has a wonderful self-image."

Patty opened her conversation with David by reminding him of when his older brother had moved into an apartment, and she explained that now it was time for him to take that step. To Patty’s great relief, his initial reaction also was great excitement. "He told his brother and sister-in-law ‘I’m a free man now.’ He was very excited. But then after the excitement, he became anxious. He was scared, and I had to reassure him. We talked about his fears, and as it got closer to the move, I thought he was doing better than I was!"

Dr. Becker confirms that discussing the move out of the home  is one of the hardest things for parents. "They think their children will feel they’re trying to put them away," he says. "The reality is that most clients themselves feel very good about it."

Leading up to the move, staff worked with the families to help prepare them. Dr. Becker led two group sessions during which he asked them to share their fears and anxieties. He explains, "It was very important that the anxieties come out. We get all of their worries out on the table."

"We could verbalize our anxieties no matter how stupid we thought they sounded," said Patty, "and then you realized someone whom you know and respected was thinking the same things you were."

The list went from the general to the specific. Will they get along? Will they get proper nutrition? Will they have accidents? And what about privacy and boundary issues?

Dr. Becker asked each of them to rate their anxieties from the highest to the least important. Then he gave them each their own sheet with their hierarchy of worries. "We like to have people measure their anxiety. It adds a perspective that helps them to regulate."

Dr. Becker continues, "We do this because at the moment of separation, you can be ready, ready, ready, but the underlying fears and anxieties are right there no matter when it is. Parents have to be willing to tolerate a certain amount of anxiety."

"I didn’t know I needed this," says Diana, "but it was very helpful."

Lewis' sister also participated, bringing her own experienced perspective but understanding what the others were going through. "It’s scary. You don’t know how it will be. In the past, I worried that something could happen during the night when there was no staff there. Or that he could burn himself using the stove."

However Lewis' sister found herself offering reassurance to the others. "I had no concerns," she said quite sincerely. "The difference is that with all the things I worried about over the years, nothing ever happened. So I learned that I shouldn’t have worried, and it eased my mind."

Everyone had at least some nervousness leading up to moving day.

Lewis' sister  helped him overcome his fears of going to a new, unfamiliar place. "I had to coax him. We talked about all the people he knows who have moved, and pointed out all the things that would be familiar about the new place. Sarah, the program coordinator, had been on the staff at his previous residence, and that probably helped most of all. After a while, it’s as if Lewis mulls these things over and finally says ‘It’s not so bad.’ By moving day, he was ready."

Diana looks at Saarin’s excitement over preparing to move as a measure of just how ready she was for this next step. "Saarin took a big interest in preparations like decorating her room," says Diana. "One day we went to pick up a Venetian blind. Saarin insisted on carrying it and we had to take it right over to her room. She was taking part like she’s never taken part before."

Nevertheless, once Saarin was all moved in, it was difficult to say goodbye to her daughter that first night. Thankfully, sensitive staff helped ease Saarin over that first hurdle.

For David, Patty kept the mood low-key at home in the weeks before the move. Some days he expressed feeling nervous and she didn’t want to heighten his anxiety. "Moving day was difficult," says Patty. "David’s brother and his wife came to help and we enjoyed the day together, but David was nervous. He was anxious to get there, and when we said goodbye, there was a look in his eye for a second. He looked a little scared." 

"The next morning he called and said ‘I did it!’ He was proud of himself. "I didn’t sleep all night," she said.

Dr. Becker emphasizes that it’s a painful process these parents are going through and that Lewis’ parents went through almost twenty years ago. "No matter at what age the separation occurs, families go through the exact same thing," he says. "Moving from the home brings the parents back to the point of diagnosis and all of the sadness of it."

When David went on vacation to Florida, his mother said he had a great time, but couldn’t wait to get back. And his roommates missed him too. She adds, "Recently David was scheduled to go to a program activity, but he decided instead to go to dinner with his friends. How wonderful for him to have that choice. Now he tells me ‘I’m my own man, Mom.’"

All three roommates have responsibilities, like helping with laundry or meal preparation, which give them opportunities to learn new life skills.

"Saarin already thinks of the apartment as her home," says Diana, "and she’s having to do a lot of new things. When she lived at home, I couldn’t get her to talk on the phone. After she moved, immediately she was talking on the phone to me and to others. She was even answering the phone!"

"Lewis enjoys the camaraderie of having two roommates," says his sister, "and he also visits with the tenants downstairs. It’s very homey for him here."

She recalls how Lewis’ life changed when he first moved into a group home in the early 1980s. "He became much more active and even took off the extra pounds he had put on up to that point. Another thing — Lewis has a checkbook. Back when he was living at home, I don’t think my parents would have thought of that."

Two weeks after moving into the apartment, David went skiing at Ski Sundown and had a minor accident. The chair lift hit him, and while he wasn’t hurt badly, he was taken to the hospital to make sure he was alright. Patty received a call from Sarah, the program coordinator and immediately headed for the hospital.

"HARC staff was there before I was," she said. "This was an eye-opener for me. I saw that the system worked. I realized that HARC staff think of him as their responsibility."

Patty added, "Just realizing there is someone else to pick up the slack, to share the responsibility… it relieves a tremendous anxiety."

It’s also a relief from the day-to-day demands of being the parent of a child with retardation. "I put in a lot of time and energy," says Patty, "David was very busy and I was very busy creating opportunities for David."

Diana agrees, "I had felt for very many years, ‘I can do this," but I realized that I was getting tired. Not of Saarin, but of the constant maintenance, keeping track of a huge number of details, and creating and implementing her social opportunities."

However, there’s another side to the realization that you’re not in charge any more. Dr. Becker explains, "Now parents are asked to tolerate a certain level of anxiety over not being there to take care of their child the way they always have. Are they eating well? Is their hygiene good? Are they having to cross the street by themselves? "

Diana admits to some of those anxieties. "I was thrilled and I continue to be thrilled to see my daughter move on to the next step and to see how great the staff is. But I don’t feel completely at ease yet. I think that will take awhile - just as it will to learn how to work as a team with her staff"

All three families feel fortunate to have a placement in this program.

"I advocated for David for years," says Patty. The people at DMR knew me. My caseworker advocated for David and so did Steve Becker. I know that t aren’t enough places for people. I consider myself very lucky."

Diana agrees, "I contacted DMR when Saarin was just a small child. When Saarin was thirteen,

I made sure her name was on DMR’s residential waiting list. It has also helped me tremendously, to be involved with HARC. It started as a desire to come to terms with this disability in as full a way as I could, and my involvement with HARC has helped me to do that in a multitude of ways."

Diana encourages other parents, if they haven’t already done so, to get in touch with DMR. "Parents need to let people know what their needs are and what they want for their child."

Whatever sadness they have dealt with, all three families emphasize their hopes for a happy life for their family member. Patty: "He’s blossoming. I’m so happy for him because he’s going to have the fullest life he can have. That’s what makes me happy." Diana: "I’m thrilled to see my daughter taking on this challenge, and doing it and being so happy." Lewis' sister: "I feel very good about Lewis’ situation. I can see the program works. And the staff has been wonderful to him. His job coach has been wonderful. I can’t say enough about how great they are."

That winter day when everyone was gathered in the kitchen, Sarah began talking about the party they would have this spring. A party! The excitement level went up a few notches as they thought about all the friends they’d invite and the good time they’d have. It will be a celebration to look forward to, and one they have earned. And this group loves a party.