There has been much made in the media about the stress on marriage and the high rates of divorce affecting couples who have a child with a developmental disability. Yet at the same time, counter studies have been published that refute many of these claims – reporting that this data has been exaggerated and that these families do not have a significantly higher divorce rate.
Which of these assertions is true?
In our experience working with families, we can certainly understand both perspectives.
There is undoubtedly an inordinate amount of stress placed on a marriage when a child has a disability, and we have seen marriages unravel before our eyes due to complications and stress that simply can’t be managed. When this happens, the consequences of divorce can be enormous and exponential: the financial pressures, stress of single-parent caregiving, impact on the child with a disability who has an even harder time managing change; as well as effects on the typically developing children who are already coping with having a sibling with special needs.
Yet we have also seen couples who parent a child with a disability with marriages that are incredibly strong: couples who “have each other’s backs,” who understand the unique pressures they each face and provide support to one another as they meet them. We have seen couples with an extraordinary level of emotional closeness that is fostered by the all-encompassing challenge that is caring for a child with special needs.
What are some of the challenges that these marriages face? What are the family dynamics that can contribute to the stress in a marriage when there is a child with special needs? And most importantly: what are the strategies that many couples have successfully utilized to transform some of those challenges into strengths?
* Financial Stress: Families who have a child with a disability often experience extraordinary financial stress due to the increased costs of therapy, treatment, special diets, respite and other care. It may also create a situation where one parent has to work overtime in the provider role, becoming virtually an absentee parent while the remaining parent assumes the caregiving role. The financially providing parent may feel extremely pressured and not understand why his/her spouse resents his long absences, causing both parents to feel misunderstood and unappreciated.
* Unequal caregiving responsibilities: Often one parent, (usually the mother) carries a disproportionate amount of the caregiving responsibilities. These roles may be assumed by design or they may just evolve over time. This can occur even when financial responsibilities are shared. In these instances, the primary caregiver will often feel that her/his spouse just doesn’t “get it”- the extent of the care they need to provide, the minutiae of their daily responsibilities, the stress from navigating the bureaucratic service delivery system and their personal need for some time away from caregiving. This divide can create emotional distance unless it is recognized and suitable attention is focused on the needs of both parents.
* Time and Energy: There are only so many reserves of time and energy to be had, and the child with disabilities will likely consume all of them. There is little left over for even the typically developing children in the family, let alone the couple. Even if the couple understands their need and right to have time together and does not perceive it as indulgent, it is usually not realistic as caregiving issues and the needs of the child with disabilities often get in the way. In order for this couples time to happen, family and/or community members must recognize and actively work to address this issue, giving couples precious time alone outside of their caregiving responsibilities to connect and recharge their emotional batteries.
* Differences in coping styles: Having a child with a disability often requires parents to acknowledge the loss of the child they wished to have, and to accept and embrace the child they were given. This process is not a finite event with a beginning and an end, but rather continues throughout one’s lifetime. It is often revisited at different stages in the child’s development and in the family’s life cycle.
Often parents have different coping styles and do not experience this process in the same way. One partner may need more time to process his/her situation more, more outlets for verbal communication and support, and to be more open and direct about his/her feelings. Another partner may be more private about his feelings, may not come to an acceptance at the same rate as his/her spouse, or even at all. Some spouses have a more positive outlook while others have a hard time moving forward from their pain. A recent NY Times article, “The Psychic Toll Paid In a Special Needs House” by Ron Lieber, captured it well: “One person in a couple with a child whose disability was unexpected may have difficulty accepting it,” said Christoper Currin, a parent and financial planner who worked with divorced couples. “A deeper wellspring of love may open up in one of them, while the other goes to that well and finds it empty.”
In addition, spiritual differences can be highlighted, as some parents can strengthen their religious faith in the face of such a challenge, while others will find themselves questioning their beliefs and/or angry about their situation.
Finally, stereotypical male/female differences can also come into play. Many fathers we know have acknowledged difficulty in expressing their feelings, preferring instead to problem-solve and “fix things.” They are left feeling helpless when they realize their current problems cannot be “fixed.” Many mothers have expressed their wish that their husbands would simply be there for them and listen to their struggles without feeling blamed or pressured to solve them.
Successfully communicating couples need not necessarily have the exact same style of coping. Yet they should be aware of their differences in approach, accept one another’s coping style, and periodically communicate about these issues. All feelings should be validated as legitimate, even if they differ from one’s own. The parent who has a harder time acknowledging his feelings should not be made to feel that his style is less healthy, and should be given the time and space to process feelings at his own pace. The parent who may need more open communication, processing and emotional support, should actively pursue other outlets in order to meet that need – such as counseling, peer mentoring and support groups.
Programs that address some of these differences head-on can be very beneficial for families. Mothers and Fathers groups can illuminate some of these differences and provide support in navigating them. The less communicative parent can be taught to validate feelings and agree to set aside a small amount of time to just listen, if not talk him/herself. Parents who are successful in working through these coping differences report “checking in” with one another periodically about how they are doing. “Are we OK? If we are not OK, what can we do differently?” This gives them a sense of working through things as a team, even if they are not always on the same page on every issue.
* Decisions regarding family size: This is certainly not limited to families who have children with disabilities, as all couples need to be on the same page regarding these issues. Families who have children with disabilities have additional issues to consider in growing their families: caregiving responsibilities of the parents; burnout level of the primary caregiver; anxiety of one or both parents regarding the health status of future children; the risk of any genetic issues, if they exist, to future children; concern for unduly burdening the typically developing children in the family; and more. If parents are not united in their wishes regarding family size, it can create enormous resentment and feelings of alienation in one or both of them. Enhanced communication can help each understand the concerns and feelings of the other and come to mutually agreed upon decisions [in consultation with their Rabbi, as deemed appropriate].
* Excessive Parental Involvement: A new phenomenon that in the current generation of families is the excessive involvement of grandparents. Adult parents of children with disabilities are typically in need of as much assistance as possible, and many grandparents provide it in the form of financial assistance, babysitting and help navigating the service system. The downside to such assistance is that at times the grandparents may overstep boundaries and inadvertently intrude upon the parents’ authority, space or cohesion as a couple. Successful couples accept help from their parents, while at the same time presenting a united front and maintaining parental authority and appropriate boundaries in the relationship.
Other protective factors that help strengthen couples:
* Tap into the humor. One couple jokingly says that they had better stay together because “no one else in the world would take us with this package!” Another couple, who find themselves depleted after a full day of caregiving their child with high behavioral needs, have a “secret signal” to let each other know if they need help, because “we are so wiped, we can’t even look at each other, let alone communicate, after a day like that!”
* Show appreciation. Expressing gratitude, even for the things that one’s spouse should be doing, goes a long way to reinforcing the connection between both partners.
* Experience joy. Finding ways to experience joy as a family is essential, even if it seems very challenging to do so. Locating accessible trip destinations, programs that take into account the needs of children with disabilities, and sensory friendly recreation opportunities – help couples and children create positive associations and fun family memories which can get them through the difficult times.
* Seek support. Services, support and as much respite as possible are not luxuries. They are necessary to keep families functioning and marriages healthy and thriving.
In conclusion, couples who parent children with disabilities deserve compassion and understanding of the unique challenges that they face on a daily basis. Family, community members and professionals who interact with them, should strive to provide extra support in meeting those challenges, thereby strengthening their marriages and entire families in the process.
About the Author: Tzivy Ross Reiter, LCSW-R, is a Director at Ohel Bais Ezra and an advisor to Building Blocks Magazine. She has written extensively about issues related to developmental disabilities and mental health. She is also the author of “Briefcases & Baby Bottles: The Working Mother’s Guide to Nurturing a Jewish Home; Feldheim, 2012.”
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