Few of us would deny that there are unique challenges inherent in parenting a child who is deaf or hard of hearing. Even when the parenting experience is joyous and rewarding, there are extra demands on both parents that often impact their relationship.
The divorce rate of parents of children with disabilities is well above that of the general population, yet few books or articles have been written to help parents navigate the sometimes rough waters of parenting a child who has special needs. In this article, I will summarize some of the common partnership issues that parents of deaf and hard of hearing children might face and suggest a few strategies to strengthen communication and enhance a couple's bond.
For most hearing parents, the identification of a child as having a significant hearing loss is a time of surprise or shock followed by a period of grieving or adjustment. When most of us promised to be with our spouses or partners for better or for worse, in sickness and in health, we did not envision a future with a special needs child. We may have dreamed of the "perfect family"-until the day someone told us that our long-awaited and greatly loved child had a significant hearing loss. Deborah Gough, the parent of a child with autism, describes the process as living inside an eggshell in which the walls are covered with beautiful murals depicting your hopes, dreams, plans and fantasies for the future (Ouellette and Gough, 2002). In this egg, she says, you understand the way things work and feel comfortable and safe. You know how to handle life using strategies and approaches that have worked well for you in the past. You have a sense of control. Then one day, you suffer great loss, and the eggshell begins to crack. You can't imagine that your beautiful egg can be flawed in any way, and you deny what is happening. You try to fix the crack, or perhaps cover it up with something else. The crack grows wider and longer until you can no longer deny that your world has changed in profound ways. At this point, you begin to, as Ken Moses (1995) states, "wander in a dreamless world" struggling with an array of emotions that can include anxiety, depression, guilt, anger, hopelessness, and despair as you begin the process of attaching to a new dream that is more congruent with your reality, a new egg in which you will live.
Each individual approaches the process of adjustment or grieving differently. People grieve at different paces and in their own way. Some of us remain in a state of denial, while others are immediately angry or overwhelmingly sad. When our daughter was identified as deaf, my initial reaction was one of happiness and amazement! I had worked in the field of deafness for many years and had many deaf friends, so I didn't see her deafness as a bad thing. My husband didn't have the exposure to the deaf community and culture that I had, and his reaction was to strike out in anger, blaming the audiologist, otolaryngologist and everyone else involved in the diagnostic process. (Of course at the time, it was obvious that he was doing it all wrong and I had it exactly right!) I'm sure my initial reaction was totally confusing to him as well. Later, when I became depressed as I said goodbye to the hearing child I thought I had (a necessary step to fully embracing our deaf child), my husband struggled with knowing how to comfort me. He didn't understand the source of my pain.
Because we grieve and adjust differently, we often fail to appreciate and respect our spouses' style of coping with news that often has a profound effect on everyone in the family. Marital discord can arise when we fail to really listen without judgment of our spouse's feelings and experiences. This is not an easy task under the best of circumstances, and it is clearly difficult under challenging emotional conditions. Grieving and adjustment are hard work. The intensity of our emotions often leaves us with little energy to attend to the the needs of our marriage at a time when those needs may be high. This inability to respond can further widen the gulf in our relationships.
There are other factors during the early stages of parenting that present challenges to relationships. Parents of deaf and hard of hearing children are often faced with an overwhelming number of decisions that must be made soon after the child's hearing loss is identified, and during the period of time when parents have little emotional energy. Decisions regarding new information about hearing aids, choice of communication methods and modalities, cochlear implant surgery, and placement in early intervention programs need to be made in rapid succession following identification. To make matters more difficult, these decisions must be made with limited information and in the midst of highly-conflicted and strongly-held opinions. What a confusing and stressful time for parents. Making major choices tests the mettle of couples under the best of circumstances. Lack of information, exposure to highly polarized positions, and the life long impact of the decisions made on the child and the family compound the situation and the stress.
Figuring out role differentiation issues is a challenge for most couples: Who will be the primary breadwinner, or will that responsibility be shared? Who will care for the children, take care of the house, manage the business aspects of the family? Here again, parenting a child with special needs creates unique challenges. Following the identification of hearing loss, there is a tremendous amount of new information to master and tasks to complete. Who will sort through the confusing literature and opinions on cochlear implants? Who will learn sign language or cued speech and teach the child? Who will take the child to the preschool program or early intervention program every day? Who will work with all the professionals? Who will study insurance coverage and resolve issues? Often, one parent takes the lead on these tasks and becomes the family "expert." The other parent may, in turn, assume a more distant role.
There is often the need to reorganize the distribution of labor and responsibility in the family following the identification of hearing loss. A common model is that one spouse, usually the mother, takes the child to scheduled appointments and begins to become more familiar with the terminology, information and issues related to the hearing loss than the other spouse. She becomes the "expert," the one who knows what needs to be done and how to do it. The other spouse may become more distant, choosing to focus on work or other pursuits. In some cases, the primary caretaker may intentionally exclude her partner from the decision-making process. Luterman (2001) suggests that this may occur if she has unresolved guilt and sees taking care of the child as her way to make things right. He states that other parents may derive a sense of self-worth from taking care of the child and feel that he or she is the only person who can care for the child well. For some parents, Luterman notes, this can give a sense of meaning and direction to their lives. When this happens, the less involved parent may feel incompetent or insecure in his ability to care for the child. The one who is most involved may feel exhausted with little energy left for the relationship. The less-involved spouse seeks fulfillment elsewhere, often in his work, which further widens the marital gap.
Lack of support may also be an issue for couples. Just at the time when couples need help and support from their family and friends, these people may be unavailable or unable to "be there" for them. The couple's parents, typically a source of information and support, may be ill-equipped to suggest strategies for parenting a deaf or hard of hearing child. More difficult still, grandparents may be involved in their own process of adjustment or grieving not just for the grandchild, but for their own child's pain. Well-meaning friends may be at a loss as how best to help or support the couple. Some professionals may not seem as attentive, open-minded, or caring as parents wish they would be. Without others to share in or deflect this stress, the couple may have only each other for support, adding to feelings of isolation and exacerbating relationship stress.
Not only do parents suffer when their relationships are stressed, but children may be caught in the middle between parents who are having difficulty resolving their differences. Even very young children are aware of when their parents are experiencing strife. Occasionally, a parent may side with the child against the spouse. Mendelsohn and Rozek (1983) note that the "intrinsic characteristics of deafness and the caretaking process lend themselves to the child being easily triangulated into the anxious or conflictual areas in the family. The disability puts the child into focus more easily because of the need for more attention and care." (p.39). This process can cause conflict and interfere with quality parenting.
On a positive note, family therapy theory notes that a change in any one part of a system will affect the entire system. When parental relationships are strengthened, it is likely that the parent-child relationship will also grow stronger and more positive. Let's look at a few suggestions for building solid relationships in the midst of the joys, trials and challenges of parenting.
Communicate, communicate, communicate! It is essential for couples to talk with each other openly, honestly, and often. They need to share the complex feelings they may be experiencing with each other in an environment in which they will not be judged or criticized. Moses and Kearney (1995) say that in order to heal, our feelings of denial, anger, depression, sadness, guilt, etc. need to be shared with a significant person in our lives. When that occurs, when we are listened to with empathy, unconditional positive regard and a non-judgmental attitude, we can begin the process of redefining what makes sense in the new context (or as Dr. Gough would say, egg) that we now inhabit. It is this kind of exchange that strengthens relationships, even in the midst of pressures that threaten to rip apart the fabric of the relationship.
Talking about and listening to feelings is the single most important step you can take together. Once better communication is established, talk about what you value and your roles as parents. Do they work well for you? Does one of you need more help or want to be more involved but doesn't know how? Keep each other informed regarding new information, contacts, and decisions.
When you argue, fight fair! Don't do it in front of the kids, no matter what their ages. Even babies can sense tension. Stay on topic. What happened last month or ten years ago isn't relevant to what you're trying to figure out now. Don't hit below the belt with comments like, "You're just as stubborn as your mother was!" Take turns talking while the other listens--then restate what's been said. Agree not to engage in name calling or other forms of disrespect.
Set aside time for you and your spouse/partner. Strengthening your relationship is the most important thing you can do for your children. Have a weekly date night, even if it is only a thirty-minute cup of coffee. Just as the flight attendant reminds the passengers to don their oxygen masks before helping their children, the time and effort spent in caring for yourselves and your relationship is an excellent investment in your children's future.
Finally, ask for help when you need it. Everyone hits rough patches in relationships. Take time to develop or strengthen your support network. Pursue professional assistance when it might help you work through an impasse or understand issues better. A clergy person may be an excellent source of support and information. licensed marriage and family therapists are specifically trained to work with couples and families. You can find one near your home by visiting the American Association of Marriage and Family Therapists website at http://www.aamft.org and using their Therapist Locator service. Many licensed clinical social workers and licensed professional counselors may provide marital and relationship counseling services.
I've emphasized some of the relationship challenges of parenting deaf or hard of hearing children, but I would like to close with an acknowledgement that many couples find their relationships enriched as they journey together toward the goal that all parents have: raising a happy, healthy, independent, productive and caring adult. While deafness offers some unique challenges, many of the issues discussed here are common to parents of hearing children as well. When couples work together to improve communication and strengthen their relationship, everyone in the family benefits.
Luterman, D.M. (2001). Counseling persons with communicative disorders and their families (4th edition), Austin , TX : Pro-Ed.
Mendelsohn, M. and Rozek, F. (1983). Denying disability: The case of deafness. Family Systems Medicine, I (2), 37-47.
Moses, K. and Kearney , R. (1995). Transition therapy: An experiential approach to facilitating growth in light of loss. Evanston , IL : Resource Networks, Inc.
Ouellette, S.E. and Gough, D. (2002). Adjustment to and acceptance of disability. In S. Andrew and C. Faubion, eds. Rehabilitation services: An introduction for the human services professional. Osage Beach , MO : Aspen Publications.
Editor's Note: Sue E. Ouellette earned a doctorate in Communication from Kent State University and is a Licensed Marriage and Family Therapist, Licensed Clinical Professional Counselor, Nationally Certified Counselor and Certified Rehabilitation Counselor. She currently serves as Professor and Chair of the Department of Communicative Disorders at Northern Illinois University . Most importantly, Sue is the parent of three children, a 19-year-old daughter who is deaf, a 17-year-old son who is hearing, and an almost 13-year-old son who is hard of hearing. She can be contacted at souellet@niu.edu.
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