PRACTICAL COUNSELING FOR TODAY’S PARENTS OF CHILDREN WITH HEARING LOSS

The key to successful integration of hearing loss into a family is the degree to which parents are able to integrate hearing loss into their lives. If hearing loss is seen as a tragedy and terrible loss, the family system will be continually assaulted by negative emotions. However, if it is treated as a teacher for everyone, and the positive aspects of hearing loss are seen and noted, then the family will flourish.

Because of the rapid changes in the world of hearing care, parents of children with a hearing loss need a reliable guide to maneuver through the technological and educational pitfalls. This article (and the book1 from which it is adapted) reflects the new reality facing parents today: early detection, sophisticated amplification whether by hearing aid or implant, and integrated school placement.

Advantaged hard-of-hearing children—no matter how severe their loss—are appearing in increasing numbers in public school programs. Many of these children have intelligible speech and grade-appropriate academic skills. It seems that, if we can intelligently apply all that we currently know and use the available technology well, we have at hand all the necessary tools to mitigate the negative educational consequences of severe to profound hearing loss. This is an incredibly exciting time.

David Luterman, DEd, is professor emeritus at Emerson College in Boston. This article was adapted from his new book, Children with Hearing Loss—A Family Guide (Auricle Ink Publishers, Sedona, Ariz, available at www.hearingproblems.com).

The technologies are in some respects a double-edge sword. They provide the means to get the children into a school with normal-hearing children where they can be competitive. These children, however, despite their good speech and language skills, still have a hearing loss and there will be many instances during a school day when they will not respond like a normal-hearing child. Many of them are also the only such child within their school and they often experience social isolation. We all need community, and if the orally successful child cannot find it within the school context, he or she will seek it elsewhere. We must give these children with hearing loss in integrated settings roots within their social context.

Professionals and parents need to work together to provide support groups and social outlets for children who are integrating with normal hearing children. This will allow them to know they are not the only one facing these challenges. Support from a child’s peer group can often be the most important influence.

I often tell parents who have recently completed the diagnostic process that you have the same child you went into the testing booth with—it’s just that you’re looking at him/her differently now. By this I mean that the “problem” at this time is the parents’ problem, not the child’s problem. For the parents, it’s a grief reaction: they’ve lost the child they thought they were going to have and the life they expected to live. This will invoke for the parents many feelings of loss. For the child, there will be feelings associated with the hearing loss, but these will not be one of loss, as almost all children with hearing loss have never heard normally or have no memory of hearing. These children have little or no concept of what they’ve lost.

Newborn Screening
With the advent of newborn screening, the diagnosis of hearing loss is, in most cases, going to be before the child is 3 months of age. The very early diagnosis seems to be a mixed blessing. In a recent study we conducted at Emerson College,2 parents of children with hearing loss were asked if they would have liked to know at birth if their child had a hearing loss. The majority answered “yes” (83%) and gave some of the following reasons:

• We could have offered earlier amplification or sign language, instead of silently moving mouths.

• Because I would have had more time to give the very important communication she missed for two years.

• Only because of a better understanding.

About one-fifth (17%) of parents said “no,” they would not have liked to know their child was hard-of-hearing, and gave some of the following reasons:

• I guess I was glad that I knew at 2 days so we could get started on what we needed to do, but I missed having the bonding time.

• Not knowing immediately gave us (mom and child) a time to bond normally, but I’m also thankful to have found out before 6 months.

• She was too sick. Knowing at birth would have been too depressing.

My experience with parents has been that, those who found out that their children have hearing loss at birth were grateful for the early information, but regret that they didn’t have time to enjoy their baby. They had to hit the ground running and couldn’t delight in their newborn. It seems to take a while for the early diagnosed parents to recognize their loss. At first, gratitude for the early start dominates their thinking. It’s only when they have time to reflect that they realize what they’ve lost.

Parents with a later diagnosis often felt guilty that they had taken so long to get started and did not always appreciate the time spent thinking of their child as normal hearing. They think of this as wasted time. I often assure them that they got a great gift in that they had this time to enjoy their child. The consensus among parents is that the most desirable time to have found out that their child had a hearing loss was after 3 months and before 6 months. Unfortunately, most screening programs are not designed to detect hearing loss after 3 months of age because of the difficulty of locating parents of newborns after they leave the hospital and the expense of setting up equipment in every pediatrician’s office. Much training and effort needs to be continuously expended to provide audiologists and hospital personnel with not only the technical skills to diagnose hearing loss in very young infants, but also to develop the skills to support the parents at an emotionally vulnerable time.

Stages of Diagnosis
The feelings experienced in the early stages of diagnosis are quite intense, and the emotional response to the child’s hearing loss is independent of the degree of loss. The disability is never in the audiogram, it’s in the perception of the parents.

Parents of children with mild hearing loss seldom appreciate being told that they are lucky their child can hear so much. For them it’s still a loss for which they have a right to grieve. In fact, research3 has shown that parents of children with mild to moderate losses are more stressed than parents of children with severe to profound losses. Parents of children with mild to moderate losses have more decisions to make regarding school placement and many of these children are on the cusp of needing a cochlear implant. Outcomes and decisions for these children are more ambiguous than for children with more severe losses. Additionally, the mildly impaired child has potentially more hearing to lose, and parents often live with the constant fear of a further increase in the hearing loss.

At the time of diagnosis a host of uncomfortable feelings usually emerge, among them fear, inadequacy, anger, guilt, vulnerability, and confusion. Underlying all this for hearing parents is the profound feeling of loss. The pain of this loss never quite goes away, as one father of a 15 year old said: “When you first find out your child is hard-of-hearing, it really hurts and then it becomes a dull ache that never goes away.”

All the feelings described above are appropriate to life’s situation: the feelings just are—they need to be listened to, validated, and not judged. Behavior has consequences that can be evaluated, so parents need not be responsible for how they feel but always and only for how they behave.

Identity Crisis
When parents need to let go of their adolescent child, they’re frequently unable to do so because they’ve defined themselves for so many years as the parent of a child with hearing loss. They have an identity crisis. “If I am not the parent of a child with a hearing loss, who am I?” This becomes a difficult question for super-dedicated parents to answer. A parent’s role is to facilitate the child’s passage into adulthood. The “letting go” is an important part of the process. In order to do this, parents must maintain suitable boundaries so that their day doesn’t rise and fall with their child’s day. It’s important for parents to process their feelings of guilt, inadequacy, and anger so that they can establish appropriate boundaries. This will also help the child to feel more self-confident in life.

All parents need to keep some energy for the marriage, their other children, and for their own personal growth. When they fail to do so, the letting go process is much harder because there doesn’t seem anywhere positive to go. The proactive parents who have taken care of their own needs and who have raised their children successfully to go out into the world are happy and supportive of their child’s leaving the nest.

The Child’s Emotions
The child with hearing loss does not experience the loss of hearing as a “loss” since the child has never heard normally. For the child of hearing parents, the loss becomes a source of alienation since it separates the child from the parents and siblings. Usually no later than around age 4 or 5, the child begins to notice that he/she is the only one in the family wearing hearing aids and this difference is usually noted without any connotation of good or bad. It is usually not until the child enters a school with children who hear normally that the hearing loss becomes a negative in the child’s mind. The loss of hearing sets the child apart from peers in an undesirable way. The speech of the child with hearing loss may be different, and their needs considered “special,” all of which serve to signal to these children that they do not belong with everyone else and also that they are deficient. At this point, the healthy child’s self-esteem can become damaged. The feeling is “I am defective, I am not OK.” Parents will then begin to get the dreaded questions: “What’s the matter with me?” or “Why am I different?”

At first, the child is usually just seeking facts, but parents tend to hear this as: “What did you do to cause me to have a hearing loss?” This often activates parental feelings of guilt. The question needs to be answered in a matter of fact way and parents can ask in turn: “Do you think it’s bad to have a hearing loss?”

Children need to be given a chance to talk about their feelings and the culture of talking about feelings needs to be part of the family in order to promote healthy emotional growth for the child. The initial question of why am I different is usually prompted by a negative interaction with a hearing peer. For children whose family is still struggling with denial or resistance, this becomes an even worse blow to their already fragile self-esteem. Some children may react by acting out in anger while others withdraw into depression. In either case, the child and the family can benefit from professional help to guide them to a healthier place.

Parents of hard-of-hearing children are often reluctant to cry in their presence for fear of upsetting them. Nevertheless, almost all children with hearing loss know that their parents are sad because of the hearing loss. At this age it’s natural for all children to assume they’re the cause for any upset in the family, and unfortunately, many children feel guilty that they have caused their parents pain. What parents need to make clear to the child is that they’re sad about the hearing loss, which neither one of them had any control over, and not about the child.

This is a difficult concept to get across to the child since the hearing loss is such a dominant feature of his/her life. Nevertheless, it is only a feature and is not an issue about the child. If the parents are in denial, the child feels that he/she must bear the weight of the parent’s expectations. Often, these are unrealistic, such as the hearing loss will be overcome, the child will speak normally, and in most respects be the child they were supposed to have. This is an unrealistic situation for the child, who can feel that there’s no way to gain the love and approval of their parents. Many children with hearing loss feel that they have somehow failed their parents. The damage this does to a child is monumental. It can become a pervasive theme in their lives.

I often tell parents this child has guaranteed you an interesting life. Despite the many difficulties, I have seen in over 40 years of active participation with families, so many of these children turn out so well. This is a testament, I think, to the care of the parents and the strength of the children. Hearing loss is truly a teacher.

Hearing Loss and the Family
Family therapists tell us that the family is a system in which all of the parts are interconnected.4 This means that, if one part of the system is not functioning well, it affects all of the other parts—even seemingly remote ones. When a child is diagnosed with a hearing loss, then we have an entire family system with a hearing problem. This is a difficult concept to grasp; many professionals fail to do so, because of a lack of training in family dynamics. It is the inclination of everyone involved to try to “fix” the defective part, (eg, the hearing of the child). In actuality, everyone within the family is suffering the pain of the diagnosis of the hearing loss and attention needs to be paid to the entire system. In order for children to be successful, they need to be within a family that is nurturing and functioning as optimally as possible.

There are characteristics of the optimum family discussed within the therapy literature which represent idealized family characteristics. No family will be able to incorporate all of these to perfection. Satir’s book, People Making,5 describes many of the characteristics of the ideal family and Napier and Whitaker’s book, The Family Crucible,6 details the way therapists work with the family unit. While both books are old, they are classics and may be read with profit by the interested reader. The Web site for the American Association of Marriage and Family Therapists (www.aamft.org) provides contemporary information on therapeutic approaches to families in stress.

Clear Communication
Almost any therapist who writes about family systems is concerned with the patterns of communication within the family. Dysfunctional families have implied communication in which much is “understood” but not said. These are silent “rules” that a family follows that are usually understood by everyone in the system. For example, a family may decide not to talk about how they feel regarding their child’s hearing loss. If there’s an implicit directive that emotions are unacceptable, family members often feel isolated in their pain.

A child’s hearing loss causes high emotions to flourish within the family, not only for the parents, but for siblings and grandparents as well. If the family has no mechanism for talking about their feelings, the family system is stressed. This can take many forms. For example, the unexpressed and unacknowledged anger is often displaced on another family member. The angry person does not recognize the source of the anger as the repressed feelings about the hearing loss. Conflicts in dysfunctional families are seldom about what they’re really angry over because parents lack the skills for direct non-threatening confrontation.

Another common emotion in less than optimal families is guilt. If not acknowledged, it leads to super dedication and overprotection of the child. This leaves little time for siblings or energy to maintain the marriage. A healthy family system would allow for clear direct communication where both feeling and content are expressed.

Conflict Mediation
The process of raising children is inherently conflicted. The parent’s responsibility is to set boundaries for the child. The child’s biological mandate is to push against the boundaries imposed by the parents. In families with a special needs child, guilt often blurs these boundaries creating an enmeshed family system. The parents try to compensate for the child’s handicap by giving in where they wouldn’t with siblings.

It becomes difficult to distinguish between normal development issues like childhood manipulation and those really attributable to the handicap. Parents can have a tendency to waver on the boundaries or help the child so much that the child doesn’t learn self-responsibility. Eventually, this can create a child who doesn’t feel secure because the rules are not clear. The child doesn’t know how to operate in the world and take responsibility for his/her actions.

It’s the job of the parents to teach conflict resolution and responsibility, modeling it themselves and gradually rewarding self-responsibility with more freedom until the child achieves adulthood. In a healthy family system, conflict is dealt with through people listening to one another and coming to solutions together that are fair and safe for the child. In less than optimal families, conflict is discouraged because it’s seen as a threat to the family system. The person who has the power usually resolves the conflicts by the threat of force. Children are expected to listen to parents solely because they are the parents, and because of their dependency, children are vulnerable to physical threats or to the withdrawal of support.

The suppression of the conflict usually leads to passive-aggressive behavior. Children learn not to confront authority directly but rather to subvert it by passive means. It is then not a question of whether conflict is present in a family, but always a matter of how the family deals with conflict.

Managing Change
Families are subject to constantly changing forces. A family system is similar to a man walking across a tightrope. In order to get across, he must constantly make small adjustments. So too with the family, adjustments must be made to a constantly changing reality. Children grow and require greater freedom, parents age and require more help. Then there are the external factors that can beset families, such as loss of job, change in location, and illness.

A child’s hearing loss is one of those external forces mandating change within the family. If the other optimal factors are present, such as clear and direct communication, role flexibility, intimacy, and conflict resolution skills, then the change becomes much easier for the family to manage than if they were absent. Change is never easy. It involves an adaptation from everyone within the family system.

This is the teaching aspect of hearing loss. We bring to life what life demands of us, and a child’s hearing loss demands new roles and new skills. In the adaptation there is learning.

The same is true for the family system. If it can accommodate to the change mandated by the child with hearing loss, then the family will grow with new skills and knowledge acquired by everyone. If it cannot change, then the family may dissolve or wallow in dysfunction.

The Successful Family
Several research studies have been conducted to determine which factors will lead to a successful outcome for a child with a disability.7-9 None of these studies looked specifically at families with hearing loss. The issue of adaptation to a disability (“success”) is not disability specific. The design of the studies was the same regardless of disability. Professionals working with the families were asked to rate them as to successful or not. Where there was unanimity of agreement among the professionals, researchers interviewed the families in depth. Successful families appeared to have some characteristics in common. They felt empowered and that they could make a difference in the child’s life. In particular, the mother felt empowered. These mothers became strong advocates for their children, found the most suitable program for their child, and utilized the skills of the professionals involved.

These findings are similar to the results of Schlessinger’s study10 cited earlier who found that mothers with high self-esteem were most successful in facilitating their child’s literacy development.

The traditional Judeo-Christian view is that God is in heaven punishing the wicked and rewarding the good. Therefore, if I have a child with a hearing loss, I must have been wicked or God is wicked. Neither position is tenable. Families must find some way to reach peace of mind, for there are many roads—all of them unique and individual.11

The key to a successful integration of hearing loss into a family is the degree to which parents are able to integrate hearing loss into their lives. If hearing loss is seen as a tragedy and a terrible loss, the family system will be continually assaulted by the negative emotions, and siblings will be at risk. If it’s treated as a teacher for everyone, and the positive aspects of hearing loss are seen and noted, then siblings can flourish. The ability to see positives in what might be an otherwise dire situation is known as reframing. It is a skill we all need to develop in order to live a healthy and happy life.

Acknowledgement
This article was adapted from a chapter in the author’s book, Children with Hearing Loss—A Family Guide, which can be obtained from Auricle Ink Publishers (www.hearingproblems.com).

References
1. Luterman D. Children with Hearing Loss—A Family Guide. Sedona, Ariz: Auricle Ink; 2006.

2. Luterman D, Kurtzer-White E. Identifying hearing loss: Parent’s needs. Jour of Audiol. 1999;8:8-13.

3. Yoshinaga-Itano C, Abdala de Uzcategui C. Early identification and social emotional factors of children with hearing loss and children screened for hearing loss. In: Kurtzer-White E, Luterman D, eds. Early Childhood Deafness. Baltimore, MD: York Press; 2001.

4. Minuchin S. Families and Family Therapy. Cambridge, MA: Harvard Univ Press; 1974.

5. Satir V. People Making. Palo Alto, Calif: Science and Behavior Books; 1971.

6. Napier A, Whitaker C. The Family Crucible. New York, NY: Harper and Row; 1978.

7. Lavall K, Keog, B. Expectation and attribution of parents of handicapped children. In: Gallagher JJ, ed. Parents and Families of Handicapped Children. San Francisco: Jossey-Bass; 1980.

8. Venter M. Families coping with chronic and severe childhood illness. The case of cystic fibrosis. Social Sci and Med. 1981;15A:289-97.

9. Gallagher JJ, Cross A, Scharfman W. Parental adaptation to a handicapped child: The fathers role. J Division for Early Childhood. 1981: 3;3-14.

10. Schlessinger, H. The elusive X factor: Parental contributions to literacy. In: Walworth M, Moores D, O’Rourke T, eds. A Free Hand. Silver Springs, MD: TJ Publishers; 1994.

11. Kushner, H.S. When Bad Things Happen to Good People. New York, NY: Avon Books; 1983.

Correspondence can be addressed to David Luterman, DEd, Professor Emeritus, Emerson College, 120 Boylston St, Boston, MA 02116; e-mail: dmluterman@aol.com.

Also at hearingreview.com

• Using Wi-Fi Technology for Children with Unilateral Losses (May 2005 HR), by Jacqueline Rogers Scholl.

• Cochlear Function in Older Infants (Sept 2003 HR), by Caroline Abdala and Leslie Visser-Dumont.

• Cochlear Implants and the Education of the Deaf Child (May 2003 HR), by Ann E. Geers.

• Fitting Children with a Digital Directional Hearing Aid (Feb 2004 HR), by Andrea Bohnert and Petra Brantzen.

• Children’s Performance: Analog vs Digital Adaptive Dual-Microphone Instruments (June 2002 HR), by Ronda K. Condie, Susan D. Scollie, and Paul Checkley.