Section I: Parent Responses and Summary of the Study Results

Throughout the study, the parents interviewed said they found themselves on a journey marked by "constant change" starting with the diagnosis of their child's hearing loss. Many of the parents expressed shock and frustration upon learning of their child's deafness, and in coping with the educational and communication decisions necessary in the child's earliest years.

The resources that families employed when gathering information about deafness and related issues included:

• themselves
• family and friends
• medical professionals
• educational professionals.

Parents reported that a number of these resources proved valuable; others were ineffective.

As time progressed, the families faced transition periods in which their attention changed to focus on managing the educational goals and placement of their child. The transition to elementary school introduced them to the Multidisciplinary Team (M-Team), while the transition into middle school shifted their focus to school facilities, scheduling, and the child's level of responsibility.

(Please note: underlined terms are defined in the Glossary in the Appendix.)

A pattern emerged from the research that identified three styles of parenting:

1. Trusting Self
2. Trusting Others/Trusting Self
3. Trusting Others.

Because of their own experiences, parents in the study were able to offer advice to other parents with children who are deaf; their recommendations include:

• research and explore all options
• be realistic
• become an advocate
• practice patience.

As the quotations and discussion in the sections that follow so vividly illustrate, a great deal can be learned by reflecting on the successes, as well as the failures, of the parents in the study as they lived through the various developmental stages of their children's lives. Some of the resources utilized by the families proved effective, while others did not. By examining the practices and interactions between parents of children who are deaf and resources available at the local and state level, others may gain insight into avenues for improving the communication and educational placement options available for families of children who are deaf.

The research also provides important information by documenting similarities and differences among the families as they made educational decisions. Perhaps this study can help professionals develop a better understanding of the various types of parenting styles as well as develop strategies to best meet the individual needs of each family.

The Initial "Shock"

Families spoke repeatedly about the instability they experienced throughout the first five years of their children's lives. This period of change began with the initial diagnosis of a severe to profound hearing loss and continued until the child entered pre-school and/or kindergarten. One parent described her frustration: Sometimes I cry because it is so hard . . .. I am tired of having to do things different. I cry because we don't have the normal, everyday life, you know.

Parents found themselves asking:

• What does it mean to be deaf?
• How will this affect our family?
• How will our child communicate?
• Where will our child attend school?

These questions are among the first that families encountered upon discovering their children were deaf. Parents faced the ominous task of coping with their children's deafness, while at the same time, making critical educational choices.

The majority of families told of the grief and fear they felt when they realized their children had severe to profound hearing losses. One parent described her reactions to the audiologist's explanation of her child's audiogram: She had to look me in the eye and say, 'Your child has a severe to profound hearing loss.' That was the last thing I heard. Another family experienced a similar reaction: [Father speaking] Yes, it was shocking. [Mother speaking] We didn't want her to be deaf and then we decided we got to. What do we do about it? Where do we go from here?

As the families began the process of coming to terms with their children's disability, they often sought the advice of others when trying to learn about deafness.

Resources Parents Used

A study conducted by Bernstein and Martin (1992) asked 128 parents of children attending residential schools for the deaf how they had obtained information about educational placement options and the reasons for choosing a residential placement. The results indicated that 72 percent of the parents had received some information pertaining to educational placement options for children who are deaf.

However, a large percentage of these parents reported that the information they received was limited to one specific placement option. In many of the cases, no discussion of multiple placement options occurred. These findings suggest that some professionals and service providers within the field of deafness don't always provide parents with sufficient information about the legally mandated educational placement options available to their children.

Some of the educational and communication advice offered by resources, including family, friends, and educational and medical professionals, proved beneficial; other advice was biased or slanted toward a particular ideological opinion or philosophy.

One parent spoke highly of the early intervention program on behalf of her son: They got down to the nitty gritty. They had an excellent program to get us going. If we had not had that to get us started, to educate us on all the methods, John [her son] would not be where he is now. But not all parents considered the information they received to be helpful. In retrospect, some of the parents expressed regret about listening to the advice of others. As one parent said: But now looking back, I can see that there was a lot of things let go there [the local county school system] that should not have been. Knowing what I know now, things were not done right.

Themselves

Frequently the parents themselves sought advice from others in learning about deafness, modes of communication, and school placement options. The majority of parents had detected a hearing problem and quickly sought medical advice. After their child's hearing loss was diagnosed, a few of the parents began to research deafness and related issues, such as communication and school options, on their own.

One parent went to the local board of education and petitioned for a teacher of the hearing impaired: We started her at South Elementary. I went to the board trying to get a teacher for her. Another parent began contacting social organizations that had a reputation for helping children with disabilities: I got on the phone and looked through the phone book and called Shriners…. I knew the Scottish Rites Hospital helped handicapped people. I thought, surely someone can tell me something.

Family and Friends

In many cases, friends and family members became instrumental in furnishing the parents with references to professionals and other service providers working with children who have disabilities.

[Mother speaking] There was nobody there, and we had to go to Smithville; we had to start finding places to call. Where do you start? The only thing we knew about was, somebody in your family knew about…. [Father speaking] John got us in touch with the Children's Hospital.

---

Another parent said: I had a friend I was working for at the time and she knew Doris and she contacted her for me. She contacted me and then we went through the state and got everything set up and she started coming in for in-home visits.

Medical Professionals

Some parents looked to the medical profession for assistance and guidance to make decisions regarding a method of communication for their children as well as the types of school programs available.

In this particular study, a few of the physicians responded quickly to the parents' concerns and handled them with sensitivity and competency. The majority of physicians, however, did not act on the concerns of the families. Frequently, the physicians considered parents "over-anxious" or "over-protective."

A few of the parents shared their experiences:

We noticed when he was about 8 months that he did not hear so we took him back and forth to the pediatrician. We did go to an audiologist within a month or two . . .. he [the audiologist] tested his hearing and said he could hear, that he was not language delayed. It was because we were bad parents. We didn't make him talk.

---

When Allen was nine-months-old, we first suspected. I called his regular pediatrician and they sent us to an ENT [ear, nose, & throat physician]. They started doing the brainstem testing and all of that. We knew there was a problem from their testing.

---

We went to an audiologist to do the ABR and then the ENT was called once they showed a mild [progressive] loss. That is what he told us: this child needs to go to a deaf school and learn sign language.

Educational Professionals

When families turned to the education profession for advice, some received a wide range of options to explore. As one parent said: We visited the three schools that they gave us. We visited all three of them [referencing an oral county program, total communication day program, and an oral day school].

One parent expressed admiration for the school administrator who gave her guidance and counsel: It was not like she was saying, 'You have to come here.' She gave us the options. She showed us different ways of learning.

Other parents, however, were presented with limited choices. As one parent said: We were not given many choices [referring to programs for children who are deaf] . . . this is what we've got . . .. Looking back, I would've liked to have had a choice.

Issues in the Transition into Elementary School

During the elementary years, the context of "constant change" moved past early intervention issues to programmatic-related matters. Although change continued, the parents began to express concerns over the "unpredictable" nature of their changing circumstances. Many of the parents felt their children's educational programs were subject to change from year to year. One parent voiced her frustration:

But you can never sit down and relax because you know the next year is coming. And even though you start out the year and you kinda take a couple of breaths, we still know that next year is coming.

Multidisciplinary Teams

When the time came for the children to enter a formal educational program, members of the multidisciplinary teams met to discuss the individual needs of the children and to determine appropriate school placements. After the initial placement, the teams held annual meetings to review the children's performances and evaluate the effectiveness of the current placements. Parents often referred to these meetings as the "Big M-Team."

Some parents described the M-Team as being calm and very productive while others expressed frustration with and distrust of the process. The following statements present a stark contrast between parents who had positive experiences working with the M-Teams and those who had negative encounters:

We have never had a bad M-Team. I mean, I have talked to other parents who have nightmares. It is like they get broadsided …. I mean they are told your child is not appropriate at this and it's like they get kinda hit.

---

They were wonderful. Any questions that we had — they explained everything. They showed us what the IEP meant and what they were going to try to do from this date to the following date of the next year.

---

It was horrible. They were very rude, defensive. They wanted him here. They wanted to put him in, like I said, in a classroom with mentally handicapped kids. There is nothing wrong with his mind; he can't hear, but there is nothing wrong with his mind. There is nothing he can't do.

Socio-Political Issues

Due to the low incidence of deafness, many rural school systems struggle to find qualified administrators, teachers, and support service providers. Limited funding, budgetary restrictions, and low pay scales often result in understaffed school programs serving students who are deaf. Two families expressed their resentments about high-ranking county administrators whom they felt lacked the qualifications of an effective leader:

[Mother speaking] I don't think he has compassion for the children. It takes somebody who has the knowledge, knows what they are doing, and knows the law and all that. But above all, I think it has to be somebody who has the heart, and I don't believe he does. I would start with him and I'd kick his butt out. I would tell him, 'You know, either you start thinking about the kids first, or take a hike.' [Father speaking] It's called politics [emphasis added].

---

They are very aware of their restraints money-wise, personnel-wise, facility-wise. I find they are not generally thinking of my child in the meetings. I don't understand why people in the IEP work for the school system, but I have always been able to get what I felt like he needed or close enough [child is attending oral, public school program].

One parent described the difficulty rural counties face when searching for qualified teachers for students who are deaf: They are still looking for a teacher of the hearing impaired. See, he really needs it, but of course it is such a rural community. It is hard to get anybody. Another problem, which can negatively impact school systems, is the lack of standards for assessing the competencies of support service providers. One parent discusses how the absence of standards opened the door to hiring unqualified staff such as sign language interpreters:

They did not have qualified interpreters and I do not understand how it is state per state. No one tests the interpreters. There were some deaf children who went in who knew more sign language than the interpreters.

All schools, whether residential or public, were subject to these socio-political concerns. Nevertheless, parents whose children attended public schools had the most concerns about high teacher turnover and inadequate support service providers. The highest teacher turnover rate witnessed by families could be linked to smaller public school programs in rural areas of the country.

Because residential schools do not necessarily require the service of sign language interpreters, inadequate support services was not necessarily a problem, but parents did express concerns about limited staffing in the student dormitories or cottages:

What I dislike most…. I guess a lot of times the kids are not always thought of first. Maybe something political comes into it and they kinda forget that they should be doing what is best for the children not necessarily what is best for whoever — the top dog [child attends residential school for the deaf].

---

It's like they don't have enough money to staff as many people as they should for the amount of kids that they have [referring to dorms at the residential school for the deaf].

Academic Settings

Parents also noted concerns about their children's academic performance and instruction during the elementary school years. Families concentrated on the educational goals set for their children and often linked program satisfaction with teacher effectiveness. In other words, if they considered teachers competent, parents were generally accepting of the school system administration and at times compromised on some issues of disagreement. On the other hand, parents unhappy with their children's teachers frequently criticized the school system and often displayed inflexibility in resolving differences with the school.

One parent described her satisfaction with her child's teacher's ability to administer various tests designed to measure educational performance. Although she disputed the effectiveness of some tests, the parent never made a formal complaint. Instead she chose to focus on the teacher's strengths and minimize the weaknesses:

The last two teachers he had in Jefferson County were really good, very good teachers. So they used the Stanford Achievement Test for the state hearing impaired. They used the KTA, which I don't particularly care for, but it helps a little bit. They have got a signing test that they gave him . . .. They go over all the testing, where he is at and what he is doing.

Another parent could have filed a complaint because the school system failed to provide sign language interpreters for parents interested in the regular mainstream program. Instead, the mother commended the teacher's efforts and stressed the positive aspects of her child's placement:

She [the teacher] was so excited, she understood that she was getting a child with no speech and also she realized that he had no signs, but was willing to try it … . The good thing was that Jimmy had pretty much one-on-one instruction for kindergarten, first, second, and third grade because he was with her. He could not go out into the classroom because there was no interpreter.

Parents who experienced negative encounters with teachers became frustrated and critical of the system. One such parent considered transferring her son to a previous school placement because of her displeasure with the classroom teacher:

The first year was a disaster. It was nothing. I mean he was so bored he would sit there and unravel his socks. She [the teacher] was trying to say he was Attention Deficit Disorder. I was like, I think we just need to get him back to the Smith County Day School.

Another parent voiced disdain for her child's teacher because of the low expectations set in the classroom. She did not feel this type of teacher was an anomaly:

I can guarantee you that teacher will never, ever, ever teach my child again as long as I am on this earth. She is wrong; she does not need to be in there because she is one of the ones with the attitude: 'They just can't do it, put them over there in the corner…. They can't learn nothing, you know, let's just baby-sit them all day.'

Issues in the Transition into Middle School

As the children completed elementary school, families tended to shift their focus to issues centered on managing their children's current educational goals and placement.

During the transition period into middle school, families felt that the greatest differences between elementary school and middle school centered on the facilities, scheduling, and the change in the student's responsibility. These three issues, interestingly, are ones that hearing children might face. One parent spoke of the similar experiences of her (hearing) son and (deaf) daughter:

I think the biggest thing in middle school - I don't think it has anything to do with the hearing-impaired program and I went through it with my son who will be a junior in high school - it is the loss of [parental] control in middle school…. They are trying to put more responsibility on the children and when they are not as responsible as they should be at times, it is like the parent is the one who feels that.

Teachers and Academics

The majority of parents expressed satisfaction with the dedication of middle school teachers and the opportunity for their children to participate in organized sports. As one parent said: I have felt like I have walked in with a group of people who knew my son, who actually knew what he was doing. Another parent also was pleased with her child's teacher: I am satisfied with the way his teacher, Ms. Jones, has really been wonderful. She seems to really be interested in Danny; you know, making him do everything and making him do it right.

Although most families viewed the teachers as caring and dedicated, many parents expressed a desire that their children be held to higher academic standards. This was especially true of reading standards. Two parents said:

I guess the thing that dissatisfies me seems to be such an accepted rule that deaf people only have a reading level of sixth grade. That bothers me. I have a problem with that. If you tell children that you can only do this and this is as far as you can go. Or if you tell anyone that . . . then that is all they will shoot for.

---

I want to be concerned over reading but they assured me over the years that is how it is with most deaf kids . . . they say, 'Ma'am you don't understand,' but starting this year it sunk in that most deaf kids don't read well. It's like you have to be a genius. It is something that is in the genes or something.

Other parents felt their children were not encouraged to reach their full academic potential, or that academic standards were not equal to standards for hearing children:

I am not satisfied because I think he can do more than that if he is pushed because he is a child who needs to be pushed.

---

I know it is a good school, but it is just my feelings, not no one else's, it is not hard enough [emphasis added]. I'm not blaming them… no one told me that they were just going to put them in there and pass them on through….

Behavior

Families also cited an increase in behavior problems as a major area of dissatisfaction. As a parent said: There are some behavior problems in the hearing-impaired classroom — at times pretty severe, not real severe, but at times.

Parents whose children lived in dormitories at residential schools tended to be more outspoken about issues of misconduct. As one parent said:

These kids come from all over. You have to imagine your child [is coming] home on the weekend, but some kids are out in this world doing just what they want and they have people do things to them. It is like, you can hope and trust in God, but you can't be there 24/7.

Styles of Parenting

Three styles of parenting emerged from the research data. These unique styles serve as the theoretical basis for this research study and are as follows:

1. Trusting Self
2. Trusting Others/Trusting Self
3. Trusting Others.

Under each of the three styles of parenting, two broad categories emerged from the data that demonstrated the differences in parenting styles. The first category (the time factor) considered the relationship between the parents' sense of time and their actions when making educational decisions. Some parents sensed tremendous pressure to act quickly while others, although aware of the importance of time, did not feel compelled to make decisions quickly.

The second category (the control factor) involved the degree to which parents thought of themselves in control of the educational decision-making process. Parents who felt in control generally exhibited more confidence and goal-oriented behaviors. On the other hand, parents who felt a lack of control over circumstances exhibited a more passive, impressionable role.

Trusting Self

Parents in this style of parenting assumed an assertive parenting role soon after learning of their children's deafness. Several of the parents included in this category were driven by the belief that early intervention was a top priority. These parents believed the sooner their children began to communicate and develop language, the better off they would be in the long run. One parent said: I knew that language develops in the first three years . . . that is why I wanted the total communication. I knew she was losing out and we did not have a lot of time.

Interestingly, several of the families included under "Trusting Self" experienced some type of disagreement with resource persons at the time of diagnosis. These encounters seemed to fuel the parents' action-oriented approach when choosing placement and communication options for their child. Consequently, these parents adopted early on a "we're in charge" attitude about their children's future. For example, one parent said: Well, we went to X County first to see what they had, and I sit in and observed a classroom where [sic] they had. They wanted to put him in a classroom with the mentally retarded kids, and I told them 'No.'

The more assertive role of these families was also evident in their role on the Multidisciplinary Team. One parent explained:

I, as a parent, am very strong to say, 'This is what I want to see happen.' I want to listen to everybody's view. I am not like, 'I, OK, I know what is right, and I am going this way,' but I also think that I know my child a little better than they do. Yes, they may be the professionals but, no, they don't live with her. I know what she truly can do.

Trusting Others/Trusting Self

Parents with this second style of parenting were more passive during the early stages of identifying their children's hearing loss. After living through a period of crisis, these families shifted to a more action-oriented role when making educational decisions for their children. One parent made the "shift" soon after the diagnoses of her son:

So one morning in July, I woke up and went 'What am I doing?' . . . I have been letting these people tell me what to do with my child. I have been letting these people do with my kid whatever they want to do and have been going along with it. But, I don't know what we are doing; I don't know why.

After making the shift from "Trusting Others" to "Trusting Self," some parents, in hindsight, mentioned the importance of time. One parent recounted how she came to understand the importance of time after watching a friend's child regress academically: The child lost almost a full year of learning. For any deaf child you cannot lose. . . I mean, time is very important. These parents also began to develop more self-assurance as demonstrated by their evolving role on the Multidisciplinary Team. For example, a parent said:

I pretty much speak my mind . . .. I have Greg on the educational track right now. He gets bored with that vocational teaching about factories, assembly line work, and he gets bored and gets in trouble . . . and so I told them I did not want him in that. I told them I want him on the educational track.

Trusting Others

Parents included in the third style of parenting viewed professionals as the experts and relied heavily on their advice when making educational decisions for their children. Parents in this group were not influenced by a strong sense of time during the early stages of identification and entrance into elementary school.

As middle school approached, however, these families began to feel concern about their children's academic performance. Though some of the parents mentioned these concerns to professionals, these parents chose not to "push the issue." Once the professionals made a recommendation, they generally went along. A parent spoke of her apprehensions when the school suggested changing to a certificate track:

She [the teacher] said instead of going diploma we should think about certificate. So we thought about it . . .. They said this way there would not be so much push and pressure. They [sic] would be at her own pace and she could learn, so we decided to do that . . .. but I don't see how in the world could someone move up and she is still in first or second grade reading level. And she is going into sixth grade?

Parents in this group chose to limit their control when making communication and placement decisions for their child. They treated the opinions of professionals very seriously and generally followed their lead. This does not mean the families never spoke up. They had genuine concerns about their children's education. Nonetheless, many chose not to act on these concerns. The reason parents chose not to "take action" when dealing with professionals varied among the families. Some parents seemed to lack self-confidence, while others suppressed their frustrations in order to maintain "peace" with the school system. One parent related her thoughts about living in a rural area:

You don't have a choice of a teacher being in a small place. And that is the only choice you have, as long as you are in the school district you do not want to displease her. That is another reason you want to listen to her and be nice to her so that the next year it may be better than the last one.

When discussing M-Team meetings, most of these "Trusting Others" parents felt free to contribute their opinions and concerns. Nevertheless, when describing the actual meetings, the professionals appeared to dominate the discussion of the children's goals and objectives:

Back in Florida, I did not know what IEP means, so it was helpful to sit there and hear what the teacher has to say about the child, and what the child needs to do . . .; so now, I do have some knowledge, not a lot, but most of the time the teacher just wants to have coffee. It is not easy to tell them I want this and them agree to it.

---

They just kinda go through the papers and kinda read them to me, you know. Ask if you have any questions, kinda explain what she will be taught.

Advice to Other Parents

At the conclusion of the interviews, the parents were asked what advice they would offer to other families with young children who are deaf. The four highest-ranking responses were:

• research and explore all options
• be realistic
• become an advocate
• practice patience

  Research and Explore All Options

The parents overwhelmingly expressed the need for families to research and explore all communication and educational options available to children who are deaf. Once parents become aware of their options, they must decide on the method of communication and a school placement that most effectively meets the needs of their children and families. One parent suggested that families living in rural areas should turn to the Internet to learn about available resources and educational options: Well, the first thing is you have to search for yourself to see what is out there, what is offered. . . . You have the Internet now. You have places everywhere to find out what is best for my child. . . . We had to go outside our community to find these things.

Two parents shared their insight into the various modes of communication and school programs for children who are deaf:

Several years ago I would have said sign language communication. Now I think I would have to determine what is the best mode for your child whether it is oral or ASL or Signed Exact English . . . whether it be a mainstream or residential. It is hard for me. I know what I have done. Of course, I have experienced all of it.

---

Educate themselves, learn, and try to learn about everything, not just, lip-reading, Signed English, or ASL, learn about it all. Try to, you know, make yourself aware of what all is available because every child is different.

Several of the parents spoke about maintaining flexibility when making educational choices for children who are deaf:

I would look at all them [program options] and decide which one it was that I liked best, but if it doesn't work out, change it. Nothing is engraved in stone. Nothing says since we chose this, it has to stay. If it does not work, change it [emphasis added].

---

Always be looking at it. If this doesn't work, let's start finding something else. Don't make the kids suffer because you are too proud to change your mind.

---

Talk to a lot of people — teachers and parents — find out all the information they can and need for their child, you know. Just go and visit different schools and find out what programs that they have.

---

Everybody is different; every family is different. One family: ASL, that is the right thing and they should be at the deaf school; another one: an oral program, a mainstream, that is the right thing. There is no right and wrong.

---

When you find out [about your child's deafness], it is better to know what all the options are. If you are comfortable with that, this is all I want for my child, that is fine. But later in life, 10 years down the line, you should not regret what you decided.

Be Realistic

The parents also stressed the importance of families with young children who are deaf to maintain realistic expectations. As one parent suggested: Be realistic, take what we have now and go from here and don't worry about it. Have a little faith that it is all going to work out. Another parent agreed: I think you must be realistic and you cannot waste any time and play around here and there. Another parent added: Be realistic. What is good for one person does not mean that it is good for everybody.

Become an Advocate

The majority of parents interviewed advised other families to become active participants in the planning of their children's education. Often parents adopted an assertive role in the educational decision-making process. As one parent stated:

I'm a parent; I am Melissa's parent, period, and I don't know anything about the educational system and don't want to get into it. But I want to make sure Melissa gets what she wants.

---

Be hardheaded. Be stubborn. Tell them what you want because only you are the only one looking out for your child.

---

[Mother speaking] Know your child and stick to your guns no matter what. . . . Always, always know your child. [Father speaking] Nobody else is going to stand up for that child, your child, like you. Nobody.

One parent expressed her sentiments on advocating for school choice: Take her to school and fight for her. Another parent reflected back on her family's early experiences with making placement decisions for their son who is deaf: We backed off when we should not have. So I would tell anyone to be like . . . a she-tiger. I think that is what you have to be and we are now.

Practice Patience

The families who participated in the study talked readily about the daily struggles of parenting a child who is deaf. The ability to practice patience seemed to help parents endure difficult times. One parent advised: [Have] a lot of patience and a lot of love. Another parent said: Patience. Patience and have a wonderful support group.

A third parent reinforced:

Be patient. You have got to find your patience . . .. I'm talking about 12 years, it is a daily struggle. I feel, I mean, sometimes you just feel like I can't do this another day . . . I have just had it. But you do. You keep on.