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"I get blamed because my expectations are too high." A family responds to uncertainty.

A Family Responds to Uncertainty,

We are here to see you about coming with us to the I.E.P core meeting for our seven-year-old son, Peter. Peter has cerebral palsy, which interferes with his schoolwork." Mr. Hayes, a short, slender man in his late 30's spoke softly. "Dr. Davis, our pediatrician, told us we would get a lot more done at the meeting with the school people if we took a professional along - and he recommended you.

"Each year, Ruth and I discuss what we are going to do and say, and, each year, we both come away feeling dissatisfied. We don't get what we want for Peter and, sooner or later, I get blamed either because my expectations are too high, or I'm so emotional that the school people think I'm not rational.

"We do have a problem figuring out how much we can expect Peter to do. I'm cast as the one whose expectations are too high, whose criticism is too severe, whose punishment is inappropriate. I say that I'm 'cast' that way because I don't see myself doing these things. It isn't that I don't do some of these things occasionally However, if I wait and don't speak about my expectations, my wife takes over and does all of the things that I'm accused of. Cathy Jones, a neighborhood busybody who is in your profession, focuses on feelings and expectations. No matter what the issue is she always speaks with certainty And she's always giving advice to all the women in the neighborhood. I think that she's caused more arguments between my wife, Ruth, and I than anything I can even imagine.

"When I get home at night, I'm not sure which of Cathy Jones' feelings and expectation speeches Ruth is going to present to me that night. Last week, we were discussing the meeting that we are going to have with the I.E.P. team. Every year, there's a discussion of how the program should be worked out. How much time should he spend in regular classrooms? How much time should he be spending in resource rooms? How much time should we spend with him at home? In all of Peter's life, no one can say with certainty, outside of our neighbor, that this is what we can expect. At times, professionals will tell us something specific, but they will usually back off when it doesn't quite work out.

"I dearly love our pediatrician, Dr. Davies. He is one of the sweetest men in the world. There are days when I wake up in the morning and thank God that he is Peter's doctor. He has helped us through some very difficult times and always answers our phone calls. He always listens. What more can you expect? If you ask him for direct advice, he says we can't be sure. Or his answers are stated in such a way that it's our responsibility to make the decision.

"The last couple of years we have not been happy with the way the school's gone about making decisions. My wife can say it's just me, but I don't think she's been any happier. They start by telling us that Peter has done better than they expected. He is doing work that's not far behind grade level. In fact, they say his reading is improving, and he has greater potential than they thought. And that parallels what happens at home. As I talk to him and try to do some work with him, I think he has a lot of ability that hasn't been shown yet. But if I say that, my wife thinks I expect so much that I have been hearing answers that he hasn't given.

"This year, when we raised the question of school with Davies, he said that, in his experience, school personnel really don't listen as much to parents as they might listen to professionals, and he said you have done a good job of representing parents in the past.

"I have mixed feelings about using you. Why can't I speak for myself? Why can't my wife and I represent what we think is best based on expert opinion and our own perspective? That's when things and people like that neighbor next door absolutely drive me up a wall. When I disagreed with Ruth about Dr. Davies' advice, she came home with the `over-expectations theory.' When I started to say I didn't agree, she said Cathy Jones said I was abusive to her; that it was not uncommon that husbands of children with disabilities abuse their wives and that she should stand up to me.

"Then I really blew my lid. Whenever we have a discussion, she begins to quote the various professionals that have seen Peter. If I raise questions, she says, `There I go again.' I'm lost no matter what I do, and we are in a vicious cycle in which I think I'm being put down, and, no matter what I do, I'm going to be wrong. And I think this may be as important to settle as your representing Peter. Somebody's got to represent me better too."

"To hear Dick talk you'd think we have a terrible marriage." Ruth Hayes, a tall, slender, somewhat graying woman who looks somewhat older than her husband, spoke quickly. "This is like an annual ritual. As we get ready for the end of the school year and the I.E.P. conference, we begin to argue more, and my husband feels more put upon. I know that he doesn't like our neighbor. But this is somebody who is willing to talk to me whenever I'm upset. She thinks that my husband feels that Peter's lack of progress is our fault and that we judge ourselves on the basis of our children's performance. I know I should stop quoting her because it's just going to lead to another argument, but I don't know how to stop. Sometimes I don't know any other way to make my own points. If I feel that Dick is not behaving well, I should tell him rather than quote experts.

"I have become accustomed to listening to other people. In my own family, there were never mandates from my parents. We were never told what to do. My parents expected my sister and I to make our own decisions. It isn't that they didn't have expectations, but they thought that it would be better for us to do it ourselves. However, my husband's family is very definitive. In a funny way, now that I think of it, they are a lot like the next door neighbor. They have very strong opinions and, at least, I guess, you know where they stand. And in a situation like we have with Peter, it might be better.

"Peter was a long, hard delivery and when he was born, I knew that something was wrong the minute my husband came into the room. Peter has cerebral palsy, and it is difficult for him to walk and to speak clearly. Since the day Peter was born, professionals have told us that it wasn't clear to them how much he was going to be able to grow and develop.

"We have had the fortune of having a lot of good people working with us from the day he was born. However, each year, when it comes to figuring out the next year's plan, they always tell us that he's done better than they expected. And my husband begins to wonder: How little did they expect? What were they withholding from us?

"My assumption is that they are not withholding anything from us. They just don't know. What's even more confusing to me is that my husband is right. That is, if he doesn't state his concerns, then I begin to express them myself. One of our arguments has to do with when I go to the appointments alone and then bring home the information. He always says, "Why didn't you ask another question?" When I say, "Why don't you go? Or why don't you change things if you don't like what I'm doing?," he says, "No, I'm happy. I just need somebody to talk to." Have you ever had problems that are this confusing?"

Although Mr. and Mrs. Hayes had made an appointment to discuss an upcoming I.E.P. meeting in reference to their seven-year-old son, Peter, who has cerebral palsy, they were told they needed a professional to represent them, and Mr. Hayes was skeptical. Mr. Hayes reviewed his relationship with his wife and the various professionals who have known his son. He claimed that Mrs. Hayes had criticized him for his behavior and continuously quoted her friends to justify her criticism. Mr. Hayes also felt that professionals - physicians, advisors, therapists - had never been able to give his family a definitive answer about his son's potential in school. As a result, he always wondered whether they were deliberately withholding information or whether they didn't know the answers to his questions anymore than anyone else. When he finally got to the issue of the I.E.P. meeting, Mr. Hayes felt the recommendation that Mr. and Mrs. Hayes employ someone to represent them to be another indication of the lack of respect of his parenting ability by professionals.

Mrs. Hayes felt that her husband was overreacting. She thought his reaction was to the annual I.E.P. meeting. Both Mr. and Mrs. Hayes always found the various meetings that they had attended which reviewed the progress of their son whether he was one-year-old or six-years-old - upsetting. They were especially troubled by the continuous lack of certainty in the judgments of everyone about what their son would be able to do in the future.

Each year, the meetings had a bittersweet quality. The school team would begin by saying how much better Peter did than they expected. However, they would then go on to talk about continuing uncertainty about how much more Peter could progress. Mrs. Hayes recognized that she and her husband had different styles of dealing with this powerful rearousal of feeling helpless about what to do for their son. She felt that Mr. Hayes was somebody who needed direct information and certainty As a result, he became angry and suspicious when no one could clearly describe his son's future. Mrs. Hayes had always lived with ambiguity in her growing-up and felt less troubled. At the same time, Mrs. Hayes recognized that Mr. Hayes often expressed her own disappointment. If he hadn't, she probably would have.

In the life of every parent, there are episodes and events that remind them of how vulnerable and helpless they can feel. For parents whose children have a disability, that continues to interfere with the way they can deal with the world. An annual review or annual physical examination or school report can take them back to their earliest memories and feelings about learning about their child's disability or about a time when the child had a serious medical problem. Such moments of vulnerability always remain with us. In the lives of families whose children or family members have serious disabilities, they are much more readily available in memory and much more likely to have a direct impact. Mrs. Hayes felt that her husband's anxiety and criticism was in direct response to this annual event.

When people are uncertain, they are more vulnerable to doubting themselves, as well as professional people with whom they work. There can be many situations in which no one has clear-cut guidelines about the future. Some uncertainty comes from the lack of information we have about particular disabilities, and some comes from the fact that new grounds and opportunities for individuals with disabilities are being charted.

At these moments of vulnerability, Mr. and Mrs. Hayes have their own styles of coping. We all need to be aware of the consequences of such feelings of vulnerability. People commonly react as Mr. Hayes did and mistrust the information. It is also not uncommon for parents to disagree about how to deal with the situation. When people working closely together are faced with stress, they often turn on each other because they are the closest people to the situation. In this family, Mrs. Hayes was able to recognize that they were responding to the specific crisis, rather than to any major flaw in the relationship.

All professionals have to develop better ways of communicating with parents. One way is to follow up conferences with clearly written reports that parents can review when they are alone. Professionals also have to be available to respond to parents when they feel upset. Too many professionals tend to insulate themselves from hearing these concerns, either by limiting the amount of time for a meeting or by being unavailable by telephone.

This case has been selected from private practice and consultation files. The names and circumstances have been changed to preserve confidentiality.
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Author:Schleifer, Maxwell J.
Publication:The Exceptional Parent
Date:Jul 1, 1990
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