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"I am stretched thin.' The challenge of sharing parental responsibilities.

Frank always says he'll help me, but he never does," Mrs. Ford, a tall, darkhaired woman in her early 30s, spoke rapidly "Last week, Ms. Anthony, who coordinates the work with our son, Jimmy, suggested that we begin to take him for speech therapy. Jimmy is our youngest. He is almost three years old. We have an older daughter, Joan, who is seven and Derek, who is five.

"When Jimmy was born, he wasn't quite right. The doctors told Frank and me that we would have trouble bringing him up. They also told us that there are lots of things they could do to help us now at the clinic that they never used to be able to do.

"It has been a tough three years. We've always been short of money even when I could work. But, now jimmy takes up so much time that I have had to give up work almost altogether.

"I never expected Frank to do much work around the house. I always figured that was my job. There is so much to do and so many directions I have to go in; I really need a lot of help. Every couple of months we discuss it, but the conversation is a dead end. Frank always claims that he does help and that he has been helping more than ever. I know he believes it when he says it, but I don't see what he actually does.

"I am still taking care of all of the kids, still preparing all the meals. I am still going 24 hours a day - it really gets irritating.

My family and Frank's family have been good. They try to do whatever they can, but they have large families and lives of their own .to lead. Last week, when we were visiting my sister, I told my sister, jeannie, how tired I was and asked her what I should do - right in front of Frank. Frank got very angry. He said he helped a good bit and that he pitched in whenever he could. We started an argument right then and there. Frank got up and left; he went home, and I stayed at my sister's. Later, she drove me home and told me to stop complaining.

"I know that I am stretched thin. I know that Jimmy would do better if he had a speech therapist. He's doing pretty well for a kid that's so hard to understand. I wish we could understand what he is trying to say Certainly, if he could make himself understood better by other don't know where I am going to get the time and the energy. So, when I got home and told Frank what the program coordinator said, he said, 'I'll do more.' Then I really blew up; I threw something at him ! "Then I got really frightened. I have always loved Frank. We have been together since we were 16. 1 always knew he was the one I was going to marry. Up until Jimmy was born, we were happy. I guess I didn't have to think much about what we did, we just enjoyed being together. Now, it's tough to enjoy anything. I really would like to make our marriage happy again."

find this as confusing as

Alice does. First of all, we

see things so differently I help a lot, more than the guys I work with. I drive a delivery truck for the post office. I talk to a lot of guys about how hard life is at home. None of them do the things that I do. I do all the shopping. Ask Alice. I get a list and I do it. I take the kids to church on Sunday.

"There are lots of things that come up that I don't tell Alice. I don't tell her about the bills that are coming in or how worried I am if we can continue to pay the mortgage. And I don't tell her about the problems that my parents have or her parents have. I try to spare her because she has so much on her mind. So, I do all this work, and I don't tell her about that.

"I am afraid to talk to her anymore because she starts shouting at me. And I just don't know what to do. I do resent it because when we go places and she says I don't do anything, I feel terrible. I don't think it's fair. So I tell Alice, 'If you think I should do more or that I am not doing enough, tell me at home. Don't tell me at your mother's house or your sister's house. Those are cheap shots.'

"But I guess neither one of us can stop. I don't know anybody who's trained to live with kids like Jimmy. I think Alice is a saint. But, I think she should pay some attention to me. I wish I could figure out how life could be more like it was before Jimmy was born. But you know, then I begin to wonder, it's not fair to blame it on Jimmy. He didn't do anything except get born with a problem.

"I love my wife. I love all my children. And I love Jimmy. But, I find myself always getting mad at the people I love. That scares me." SUMMARY AND CONCLUSIONS

he Fords came in after an intense

dispute about whether Mr. Ford

was doing his fair share of the work in the household. The quarrel started when it was suggested to Mrs. Ford that her youngest son, Jimmy, be taken to a speech therapist twice a week. Although Mrs. Ford wished to do the best for her son, she was overwhelmed by the idea of having just one more chore to do. When Mr. Ford said that he was willing to help more, his wife erupted. She challenged his willingness to do anything at all and named all of the things that he had not done.

Both Mr. and Mrs. Ford were very upset by their argument. They felt overwhelmed by the demands that their son made for time and attention and by the impact these demands had on their relationship. They both spoke of how good their lives had been before Jimmy was born, even though they were struggling financially. They wanted another child but were surprised by the work required by Jimmy.

The birth of any child changes life in any family. All family members have to develop new ways of sharing time and attention with the new member. The way this is done is unique to each family and each family member. It depends on many factors - the way they view the role of parents, their ages, their prior relationship with their own parents, the demands of their work, the other children in the family, and many others.

The Fords had looked forward to having children. Both came from close-knit family groups. Becoming parents meant another step in being more fully included in their own family networks. Not only could they expect help from each other, but they could expect support from parents, siblings, uncles and aunts.

No one is prepared for the time and energy required when a child is born with a disability. Not only is extra energy and commitment involved, but the nature of the energy required keeps changing as the child grows up. Like any family, the Fords found themselves having less time for each other and becoming more irritable.

We have developed exciting new programs to help children with disabilities grow and prosper. However, each new program may demand more of the time and energy of the family.

Parents want to do the best for their children. When the child has a problem, they are willing to find extra time and energy. Some parents have developed the ability to discuss the child's overall program with the professionals in order to set priorities and make choices. The Fords had little experience with professionals other than to listen to what they said. Then they tended to either accept it in total or feel that they couldn't act at all.

In programs that involve many aspects of a child's life, professionals may not have fully taken into account the demands that are made upon a family and the impact of these demands on total family life. This is the situation that the Fords found themselves in. They had already reached out to the resources their relatives could offer. Mr. Ford had also turned to his friends at work for extra support. Because of the difficult economic times, they found that everyone was doing more for their immediate family and had less to share and give than they had in the past.

Mr. and Mrs. Ford also faced a common dilemma: what is the definition of help?" For Mrs. Ford, help meant activities with her son, Jimmy, and the various things he needed to do. By that standard, she felt that her husband was doing very little. For Mr. Ford, reducing the pressures on his wife such as doing the shopping, not bringing certain matters to her attention and not sharing his own concerns meant that he was helping. As a result of these different perspectives, both felt misunderstood.

The supports to which each turned had different views of the roles of husbands and wives. For Mrs. Ford, her sisters and her mother felt that women had to do all that she was doing and not expect husbands to do any household chores or child care. For them, the alternative was being on welfare. For Mr. Ford, the men he talked to felt that he had done more than anyone could expect a man to do; they felt Mrs. Ford was too demanding.

For both Mr. and Mrs. Ford, the current situation was intolerable they didn't have enough time and energy to do what they were doing, and now they both felt more should be done for Jimmy. Each was also being told by their families that they were doing all they could do and that there was no new way of doing things. Nevertheless, their feelings and commitment for each other made them want to do something. For the first time, they turned to a professional to get some assistance with managing their personal lives.

The Fords were asked to prepare a daily and weekly chart of how they spent their time as well as their money. This visual presentation made it clear to both of them how hard each was working for the family as a whole and for their son. Then Mrs. Ford was able to get an evening appointment with Ms. Anthony, the medical social worker who was coordinating the activities for her son. She and Mr. Ford were able to discuss with Ms. Anthony how much time and energy they were currently spending. In this way, a review of possible alternatives that could accomplish the goals that the clinical team had established for Jimmy was initiated.

The Fords were introduced to a group of parents who were struggling with similar kinds of issues. They were encouraged to join this group because it could provide the kinds of practical support they might find useful.

A few months later, the Fords called to say they were very thankful for the help and advice they had received. While they felt that they didn't yet have the time to join another group, they were talking together every Sunday and it helped a great deal. It had helped remind them of their love for one another. They were relieved to know that some of the problems they were having were not because of the kind of people that they were but by the kind of job they were trying to do.

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Title Annotation:parenting disabled son
Author:Schleifer, Maxwell J.
Publication:The Exceptional Parent
Date:Apr 1, 1991
Previous Article:The world of parents of children with disabilities.
Next Article:The family with a handicapped child.

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