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"I get upset when I see the kids playing with Jimmy;" when should siblings help out?

"I get upset when I see the kids playing with Jimmy"

"We're fighting all the time and I don't know how to stop." Mary Costa, a short, slender, blonde-haired woman in her early 30s, cried softly as she spoke. "Last week we got a note from the nursery school teacher that our four-year-old daughter, Julie, seemed very worried at school. Jim shouted that this was the last straw. We have a year and a half-old son, Jimmy, who was born with severe physical disabilities. Ordinarily, I have my six-year-old daughter, Jane, and Julie help with minor chores while I get dinner ready.

"I had just asked Julie to go over and play with the baby, and Jim told her to stop. We have been having arguments about how much our daughters should help with Jimmy. Ordinarily, I don't do anything when Jim tells our children what to do even if I disagree, until they go to bed. And then we air our disagreements and arguments begin. It keeps taking longer and longer for me to get over these painful discussions.

"Sometimes we hardly talk for days after one of these encounters. But yesterday I just broke down and started to cry in front of the children. Jim proceeded to take the two girls out to a fast food place for dinner, and I stayed home with Jimmy.

"I think Jimmy should be included as a member of the family just as our daughters were when they were babies. He didn't complain when Julie helped me with Jane. We've gotten into an awful trap that I think neither one of us can get out of by ourselves. We try to have some discussion after an argument and we swear that we are not going to fight again. But within a week, we go back and do the same thing. The major disagreement we have is about what the girls should do for Jimmy.

"My husband feels that the children should be spared. He says that Jimmy is our problem and that although we may have to pay a price, we should not rob the children of their own pleasure and fun in growing up. They'll have plenty of time to take on burdens when thay are adults.

"I disagree. First of all, I'm the one at home. There is an awful lot to do. The kinds of things I ask them to do are appropriate for most four and six year olds--especially if they had a baby brother. I cannot do everything, particularly around dinner time. Asking them to set the table or try to amuse Jimmy is not inappropriate. He is delighted with their company and very happy when they are available.

"Maybe there are times when I want my daughters to do something with Jimmy and as a result they cannot go out and play with their friends. My husband and I differ in the way we were brought up. When I was growing up, I was expected to help. Both my parents worked. I was the oldest of six children, so life could not go on if I did not help around the house.

"Most of the time I enjoyed it. Sure, there were times when I was a teenager that I felt I was being taken advantage of. Sometimes, I couldn't go out with my friends to parties because I had the responsibility to take care of my brothers and sisters. They in turn took on responsibility when they were able. Everyone was expected to help as soon as they could put away their toys. But overall, we grew up liking each other even with our family arguments. And today I know that I can count on them.

"Here we have another difference of opinion. After Jimmy was born, my husband was reluctant to ask our families to do very much for us. I was so numb for the first few months; I really don't remember what went on. For that period of time, I found it hard enough to do things by myself; involving other people was just more than I could manage.

"My oldest sister offered to take the girls on the weekends. On occasion we let them go visit her, but this seemed to bother Jim a good bit. He felt that my family was intruding, that they commented on the way we were doing things, and almost everything they did for us he saw as a criticism.

"Finally, it became easier for me to keep them home than to let them visit. At the same time, Jim has a sister who lives near us and I have never heard from her. In his family, she was the oldest and she was never expected to do anything for anybody but herself. That's the way they are. In fact, my family cannot understand why we have not been more involved with Jim's family. I think his mother and father greatly disapprove of the way that I have asked Julie and Jane to help out.

"Sometimes I think that we will never be able to get along again. I wonder whether we will ever have any fun together again. When I really get down I think back to before Jimmy was born and what a wonderful time we had. I remember how much I enjoyed being with my husband and how much fun we all had together with the children. Sometimes I dream that Jimmy hasn't been born and we're back together again. To be honest, the dream of life without Jimmy sometimes gets me through the day. And then when I think that's what's done it, I feel ashamed of myself."

"What Mary doesn't understand is how confused I am by this whole thing." Jim Costa spoke quickly. "Mary is terrific. She has been a saint. She has done more things for all of us than any wife could ever have done for any family. I admire the amount of time and energy that she devotes to various medical programs to make sure Jimmy has the best chance growing up.

"She spends two mornings a week in a hospital doing physical exercises with Jimmy and then one morning a week the therapist comes to our house to do the exercises. We're also supposed to do some of the things ourselves. I work awfully hard. I get up early in the morning; I work all day; I come home. I try to get home before 7 p.m., so I can at least see the kids. Then we argue about whether I help out enough.

"I feel I do a lot more than Mary gives me credit for. I do a lot of the shopping. I pick up the things that she leaves lists for. Mary's so tired by 9 that she's often asleep while I'm still up doing things. I don't think I get credit for any of that. I'm also working overtime to pay our bills.

"But it is true that I get upset when I see the kids playing with Jimmy. It's all right if they do it by themselves, but I feel it is wrong to ask them to take over these responsibilities. We try to discuss how much Julie and Jane should get involved with the exercise program. One time when I met with the therapist who comes to our house, she made it clear that she thought everybody should be involved. She thought it would be wonderful if we could include the grandparents. It seemed that she wanted to make it a circus.

"Look, growing up was no picnic for me. My sister and my mother argued with each other as long as I could remember. She resented anything I asked her to do so I stopped asking. My parents didn't get along with their parents or my uncles and aunts. I grew up as if I were an only child--without anyone but myself.

"When we first got married, I loved her family. They were so open and generous. I don't know what has gotten into me that I seem to resent them so much. They make me feel like I'm a lousy father.

"Talking to my family makes me feel worse. I can't bring myself to ask them for anything. And I can't bring myself to tell Mary how critical they are of the way we are bringing up our children and what we do with Jimmy. I also think it is very helpful for kids to grow up and take care of their own business, and not necessarily get involved with the matters of other members of the family.

"I really want Julie and Jane to have a good time growing up. There has been an awful lot of sadness. I just don't want to see them as sad as Mary and I are sometimes. We are stuck, and I am not sure where we can make a beginning, but I know we can."

The Costas came because of their disagreement about the role their young daughters should pay in the life of their son Jimmy, who was born with severe physical disabilities. Mr. and Mrs. Costa had disagreed about the extent to which Mrs. Costa involved her daughters in his play as well as care. Mrs. Costa's belief was that their son, Jimmy, should be included as a member of the family, as any other baby would be. They had no difficulty when their youngest daughter was born having their oldest daughter Julie play with her and help mommy feed her. The problem between them had increased during the previous month. The last straw for Mr. Costa was when they got a note from the nursery school teacher, indicating her concern about how upset Julie seemed to be at school.

Mr. Costa considered the note evidence that proved his case--that too much was expected of the young girls and that it was time to change. Mrs. Costa focused more on their relationship as the central issue.

Mrs. Costa had been surprised at how irritated her husband had been toward her in all areas of their married life, not just in relation to their daughters. Mr. Costa admitted that he found himself shouting or being angry in ways that he had never expected of himself. They both were particularly surprised by their current unhappiness because they both had thought that their married life had been very good.

Husbands and wives have images of the kinds of parents they are going to become even before the first child is born, as well as how they will live together as a family. Parents comes to a marriage with their own set of family experiences that shape these images. During the marriage, these images become modified by the realities of the actual relationship between the husband and wife, and the actual behavior of their children.

Mrs. Costa had grown up in a family in which all the children spent much of their time together, playing with each other and working with their mother around the house. She came from a large, extended family group, who spent much of their spare time and vacation time together. She expected that her own family would behave in a very similar way and had high expectations that she would continue a lifelong association with her siblings and her parents. She had admired her husband when she first met him because of his own independence. She found that he was able to make decisions without being overly encumbered by the attitudes of other people. This, she felt, was a weakness in herself, and an admirable quality in her husband, Jim.

Mr. Costa grew up with a sister who was considerably older. In his family, there was little expectation, because of the sex differences and the age differences, that they would do very much together. In fact, Mr. Costa felt more like an only child as he grew up. This was magnified by the fact that his family did not live near any relatives and spent much of their time doing their own work. Just as his wife had been attracted by his ability to make decisions without considering everyone around him, he was attracted by Mrs. Costa's large, warm, interrelated family. He saw himself as the father who would take care of the needs of his wife and his children as well as being an active participant in Mrs. Costa's family. They both were happy during the early years of their marriage and were heavily involved together and with Mrs. Costa's family.

Life dramatically changed with the birth of their son, Jimmy. Nothing in either of their experiences had prepared them for the anguish, the disappointment and the concerns that they had.

During stressful times, families have a style of working together. Mrs. Costa expected to turn to her own family for support and had received a lot of help from her mother during the first year of her son's life and some support from her siblings. Part of the disagreement with her husband began with his feelings that her family was now intrusive. He was not sure that he wanted them to spend so much time in the care and nurture of his own children and to make so many decisions about rasing them.

At the same time, he found himself less available. Because of the large medical bills and incidentals that were not covered by their insurance, he found himself working a greater number of hours. At the same time, he had little support from his own parents or sister. When he called them, he found that they were critical of the kind of advice he and his wife had been getting from specialists.

Both Mr. and Mrs. Costa found themselves behaving in ways that they were unhappy with. They began to criticize each other at times when they both knew that they shouldn't.

Parents whose children are born with disabilities are unprepared for the amount of time and energy this stressful period will take. In the first phase after the birth, their energy is taken up as they try to absorb the meaning of the event and sort out what role it will play in their lives. Time and energy are spent reviewing and re-reviewing the experience to make some sense out of what has happened. This was a period of time that the Costas both describe as feeling numb.

During this time, people are most vulnerable to their own inner most concerns and fears. They both recalled how helpless they felt and wondered whether they were ever going to be able to summon the time, the energy and the courage to continue.

At a time when parents need to work together, the stress that they experience usually complicates their ability to communicate their own needs clearly. Unable to turn to one another, parents often struggle with their own needs for care and support. They often see themselves or the other partner as being selfish and are not sure how to change this behavior, either in themselves or in their spouses. The Costas knew they were doing things that they did not want to do but did not know how to stop. The more they argued, the more they stewed and each felt rejected and misunderstood.

People generally underestimate the time and energy that is required for parenting. This is considerably underestimated for the care of a child who has complications in growing up. All parents need to find ways of taking care of each other's needs as well as finding times to replenish their own emotional supplies if they want to meet the demands of continously understanding and meeting the needs of their children. Parents do this by finding various ways of continuing aspects of their own social life; such as going out evenings or taking small vacations. The presence of a child with a severe disability who requires special attention can seriously impede the ability of parents to support one another and to supply the nature and the respite that both need.

The Costas quickly related to their own need to spend time together alone. Each had thought about it independently; but whenever it was broached, it took place within the context of struggles about how to care for their son, Jimmy. The solution that was most readily available was to use members of Mrs. Costa's family to care for Jimmy while they found time for themselves. It also became clear to them that they had to do this not only so they could be better parents, but to preserve their marriage.

Parents commonly try to protect children from difficult experiences. They often believe that if they do not discuss their concerns the children will not know about them. In fact, children are aware of when their parents are troubled. When thay do not know why, their own concerns can be exaggerated. They can also believe they are at fault.

When children can help with a family problem, they often feel much better. Children with siblings who have serious disabilities generally have done better in their own lives if they were involved in helping. Both the Costas believed this. Both also recognized that too much involvement was not good. They had to discuss these issues and include their daughters whenever possible.

Mr. and Mrs. Costa met with me monthly during the course of the year. During this time, they were able to go back and look at their early relationship in the marriage. Mr. Costa was able to share with his wife how helpless he felt about providing for his son, and how when her family came in, it just made him feel even less capable as a father. As he began to understand the source of his own concerns, he was able to develop a better relationship not only with his wife, but with his in-laws. Mrs. Costa, at the same time, understood how important it was to discuss with her husband in advance the things that they might do for one another before she asked her children or family for help.

Mr. Costa recognized that Jimmy was a member of the family and his daughters had to be included with him. As he understood how his inability to do his ordinary fathering made him feel helpless, he realized that interfering with his daughters and their ordinary efforts to be good big sisters would be disruptive to them. Mr. and Mrs. Costa found that as they were able to work together betterthemselves, their younger daughter improved quickly at school and the general mood of the family improved. They also found that finding time to do things for each other and by themselves brought back the happy memories of the past.
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Author:Schleifer, Maxwell J.
Publication:The Exceptional Parent
Date:Jan 1, 1989
Previous Article:Our daughter is perfect.
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