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.”