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"I don't know where we're going." Marital problems and the young family.

"I don't know what happened," Frank Jones, a short and slender man in his mid-twenties, said quietly. "I just don't know where to begin.

"I guess it all starts with our son, Frank Jr., who just turned three. He was born with serious problems. Last Sunday we celebrated his third birthday and we had Jean's family and mine over. It seems that whenever we have the families together, it's very tense. When everyone went home, we cleaned up and we sat down just by ourselves, I started to cry. I don't think I have cried since I've been three years old. I just don't know what we have for a life. I don't know where we're going and I don't know what we should do. Sometimes, I wish we could start over.

"I find myself resenting attention that anyone gives Jean or my son. I also have begun to envy my friends whether they're married or single. These thoughts make me feel terrible, but I can't stop them. And, last Sunday I felt I'd reached the end of my rope. Jeanie told me she also felt discouraged but couldn't talk to anyone about how her life is going. She suggested that we come to you to see whether you can help us make sense out of what's happened to us and what our life can be.

"I can still remember when we got married. I met Jean when I was 20 and she was 19. I had just finished at community college and I didn't know what I wanted to do. Jeanie was starting a nurse's training program. We went together a couple of years. We had a great time together. We talked a lot about what we were going to do and what kind of family we were going to have. When Jeanie had one more year to go at nursing school, we decided to get married. She finished school, and a week later little Frank was born two months early

"We were looking forward to a child and thought we'd have a big family. I still remember the look on the obstetrician's face when he came to see me. He told me that Dr. Ellison was going to see Frank Jr. and would tell us what the score was. Dr. Ellison told us there was a lot of brain damage. He wasn't sure first whether Frank would live and, if he were to live, how well he would do. He was going to get a specialist in babies to look at Frankie. And it seemed that life, a part of my life, ended right then and there.

"We were both upset. I guess I showed it more than Jean. I tend to get very agitated when I can't settle something. No matter how hard we try, neither of us can remember that first week. Jean really took care of Frankie and I guess, me, for a while. From that time on, we've been surrounded by Jean's family. She has two older sisters who live not too far from us. It seems they're around all the time. It's unfair to look at it that way, I guess, because they have been very helpful and try to do what they can to help Jean. At this time Frankie can do so little for himself. He requires constant attention. But I haven't had any privacy - we haven't had any privacy since then. I began to wonder whether I really will ever have a wife again, or what kind of a wife and husband we're going to be.

"For about a year after the baby was born, our sex life was almost nothing. And I guess that was both of us. Jeanie certainly is, as I am, concerned about what would happen if we had another child - would the same thing happen? Since then, that part of our life has not been very satisfactory. Sometimes it's because Jean is tired, sometimes it's because I'm tense. At Frankie's birthday party there were no little kids his age except his cousins. I really began to wonder, who do I belong to? Who belongs to me?'

"My family has tried to help some, but they always criticize jean. They worry a lot about me. They want to know why I'm not being taken care of and why I don't look happier. And it's almost as if it's a constant criticism of Jeanie. I think I feel the same from her parents, although they don't say it: `Why aren't I a better husband?' And I began to say to myself, `I'm still young. We never go anywhere.' I can't remember the last time we took a trip together. I get confused about how I even feel about Jean from time to time. And then I feel terrible. There's got to be some better way and I just don't know what we should do."

"I feel some of the same things that Frank talks about." Jean Jones , a short, dark-haired woman in her mid-twenties had flecks of gray in her hair, making her look older than her age. "The thing I miss most is that before Frank Jr. was born, we would talk a lot. We looked forward to seeing each other - I certainly did - at night. And we would talk about our plans for the future.

"We don't do much anymore. We had a lot of friends. I had a lot of friends at nursing school. And slowly but surely, we see fewer and fewer of them. I still see some during the day. Sometimes, when my friends have odd shifts, they'll come over in the afternoon. Most of them are getting married now. Many of them are having children. I feel terrible because, like Frank, I feel jealous. I feel happy that they're having such a wonderful time. They seem so enthusiastic. And then I feel jealous that the ones that have had children are so happy afterwards. I feel terrible about that, and I think the way I feel has meant that I've lost these people as friends also.

"When we first got married, we certainly spent some time each weekend with our families. But we were independent of them. We could go away on a weekend occasionally. Ever since Frankie was born, I feel more like a daughter than a wife. Every day either my mother or one of my sisters comes to help. There is so much to do - special feeding, physical therapy, seizure meds and doctors visits - it seems neverending. I've tried doing it alone but then I'm so tired. I don't know what needs to be done about the marriage or how hard the work is. But when Frank started to cry the other night, I thought it was time to find out what kind of a marriage we have, what kind of a marriage should we have, and what's possible under these circumstances. I don't want to wind up blaming anyone for what's happened. I certainly don't want to wind up blaming Frankie. Because I think what happens is, when we turn to that, then we both feel terrible. I know there's something that can be done. What is it? I'm willing to try anything; I think Frank is, too. I wish I could say clearly that we love each other right now, but I don't know. But I do know that we once loved each other."


The Jones came to discuss their concerns about their marriage. They traced their marital problems to the birth of their son, Frank Jr., who was born with severe disabilities.

Mr. and Mrs. jones had just celebrated Frank Jr.'s third birthday When the party was over and their families had gone home, Mr. Jones began to cry. He told his wife that he did not know where their marriage was and what he could do.

Mrs. Jones agreed that their marriage had drifted over the past three years. She felt that the problems stemmed from their involvement with their own families. After Frank Jr. had been born, needing a great deal of help, they turned to their own parents and siblings. Although both of them were uncomfortable about the daily contact, neither had an idea about how to make any change.

The birth of a child is a time of special stress for all parents. When the first child of young parents is born with severe disabilities, the stress on the family is multiplied. They are faced with many questions about the short-term and long-term future of their child; questions they had not been prepared to ask and for which there are few certain answers. Dreams and expectations parents had imagined for their unborn child are suddenly lost, and parents must mourn these losses. At the same time, the daily care of the child requires a great deal of time and energy. The challenges may exceed the financial and emotional resources of the parents.

The impact of stress is shaped, in part, by the stage of family life of the parents. In the Jones family, Frank Jr.'s birth came early in their life together. When young adults marry, they need time to develop patterns of interdependence. They must move beyond their old network of relationships with family and friends, so they can devote themselves to finding ways of sharing their lives. They have to find comfortable ways of doing things together as well as areas in which they may continue to do things by themselves.

One aspect of this change is that young adults have to learn to turn to each other for solving the problems of living rather than turn to the more familiar patterns of turning to parents, siblings and friends. In stressful times, people often turn back to old familiar ways of handling crises.

The continuous stress associated with caring for Frank Jr. seemed to have prevented the Jones from developing new ways of working together on behalf of the child. Married for only a short time, they were still developing their own style of living together as a couple when they had to turn to their families for support. Soon, they found themselves sharing more with their own families than with each other. Although both felt comforted by these experiences, each one also felt uncomfortable about a sense of isolation from the other. Neither felt he or she had a clear sense of direction as to how to meet the needs of their child or how to meet their personal needs together.

Because Mrs. Jones received a great deal of support via her continuous contact with her own family, Mr. Jones had felt her family had taken control of Frank Jr.'s life. The continuous presence of family made the Jones feel more like children than adults.

They were encouraged to find time to visit each of the specialists without their families, in order to define the questions they wished to ask about the child's current program and the expectations of the future. The jones then discussed what they heard together before they shared any information with their families. They were surprised and delighted when their own parents praised them for these new efforts at independence. As they began to do this they felt emotionally closer to one another and more like husband and wife.

After a year they began to discuss a topic they had been avoiding having another child. Like many people who have had a child with a disability, the Jones had found it difficult to go back and review with the obstetrician their concerns about having another child.

They also began to define with their parents and families the kinds of support they wanted and how they might use the free time this produced.

For the first time in three years, they were able to take a week's vacation, as they arranged support and respite with their parents. Meeting once a month, they were able to begin to discuss issues that needed to be settled for them to plan ahead for an expanded family.

This case has been selected from private practice and consultation files. The names and circumstances have been changed to preserve confidentiality.
COPYRIGHT 1991 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1991 Gale, Cengage Learning. All rights reserved.

Article Details
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Author:Schleifer, Maxwell J.
Publication:The Exceptional Parent
Date:Jun 1, 1991
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