All of us who are parents of children with special needs can recall the moment we first heard a professional confirm that there was something different about our child. As I (Paul LeBuffe) think back to that day more than 25 years ago, what is seared in my memory is not wanting to make eye contact with my wife for fear that I would break down and wondering if we would ever be a “normal,” happy family.
Over the next decade, I would meet and become lifelong friends with couples whose marriages were made stronger, their families more bonded, and their lives more full of joy and meaning by having a child with special needs. I also met some families who struggled with the strain of being “an exceptional family,” sometimes resulting in divorce or separation. When I say exceptional family, I’m referring to families that have one or more members, often children, with differences that could include medical, cognitive, neurological, behavioral, sensory, or physical special needs.
Often, the difference between these families came down to their skills at family coping and resilience. The first set of families were able to frame the stress and uncertainty of having a child with special needs as a challenge that provided opportunities for coming together and finding optimism, joy, and meaning. Those families who struggled may have seen the task of parenting a child with special needs as a crisis-causing stressor, which made them prone to becoming overwhelmed and demoralized, often leading to additional crises.
For the past 25 years, my career has focused on promoting resilience in children, youth, and adults—a quality that we all admire in others and want to cultivate in ourselves. But we often think of resilience as a static trait: “She deals with things so well” or “I wish I could be stronger.”
Yet research suggests that resilience can be learned and developed. I’ve come to see resilience as a balance between the challenges in our lives and the resources we have to face them—some internal, some external. That means that our ability to be resilient is constantly changing, and we cope better when we monitor this balance and make adjustments. Understanding the processes underlying resilience can help you to survive and thrive—whether you’re in an exceptional family or not.
Risk processes vs. protective processes
We often think of people as resilient when they have overcome some significant challenges. In research, we call those challenges “risk processes.”
Risk processes are circumstances, events, or characteristics that interfere with development (for a child) or well-being (for an adult). The risk process might be an illness or accident, a trauma or tragedy, or it might be more long-term challenges such as poverty, disability, or lack of education.
Despite these adversities, resilient individuals lead happy, productive lives, which leads to our definition of resilience: bouncing back from risk or adversity. Researchers Emmy Werner and Ruth Smith described resilient children as “defying the odds” and noted that one-third of high-risk children became young adults who “loved well, worked well, played well, and expected well” despite the hardships in their lives.
So how do people manage to be resilient? What enables them (and, we hope, us) to defy the odds?
Resilient people often have many protective processes in their lives. These are things that help protect them from the negative impact of the risk processes and help them cope successfully. It might be helpful to think of protective processes like an umbrella—it doesn’t stop the downpour, but it helps keep you dry. We call them processes because they are events, circumstances, and relationships—like risk processes—that always require adjustment. After all, when the wind shifts and you don’t move your umbrella accordingly, you may be holding one, but you will still be soaked.
In the case of parents of children with special needs, protective processes often fall into three groups:
- First, many are found in our communities, such as great doctors, high-quality early intervention or special education programs, access to adapted playgrounds, and well-run parent support groups. Families who are able to access these resources and feel like their needs are being met are more likely to feel connected to the community. We know that connection to effective schools and community resources is an important element of resilience for all families.
- Protective processes also exist within our families. Supportive parents, accepting siblings, strong and mutually supportive spouses and partners, and understanding and welcoming extended family members are key to our coping. Family history, rituals, culture, and faith traditions can also be sources of strength and inspiration. A large body of research underscores the role of secure, loving relationships in supporting development for children and better health and well-being for all family members.
- Finally, we find protective processes within ourselves, such as a sense of humor, perseverance, and hopefulness. Our problem-solving skills and our ability to regulate our emotions and behavior are other important facets of individual resilience. So it seems that a combination of a hopeful outlook and the social-emotional skills to manage challenging situations effectively allows individual family members to contribute to a resilient family.
These protective processes within our community, our families, and ourselves are what help us cope with risk and adversity. It is as if our lives were a balance, with risk processes on one side and protective processes on the other. The balance between the two has a lot to do with how happy, meaningful, and loving our family life is.
What this means for your family
For families of children with special needs, maintaining the balance of risk and protective processes brings unique challenges. Exceptional families may struggle with understanding the specific needs of their family, managing the financial and personal costs of medical or therapy services, and helping siblings or extended family make sense of the unique needs of the child with special needs. If families view each stressor as a crisis, they are likely to be bogged down in “surviving” a series of crises. These families may not believe that they should take time away from dealing with “problems” to engage in positive efforts to build family resilience.
But those efforts can have lasting effects on family life—and they will look different for every family. From a variety of research, it is clear that family resilience builds in the context of relationships and arises from complex, ongoing interactions within a family and across and between systems like health care, education, and social services. This suggests there are many ways to build family resilience in the exceptional family—there is no single right way.
Overall, the task of the resilient exceptional family is to prioritize family bonding, family identity, and collective family efforts to cope with stress. As we’ll discuss in future articles, this means building in regular, positive rituals as a family that can support nurturing bonds among all family members, which serve as a foundation and home base from which they derive strength to face obstacles. It means having conversations about what it means to be a member of this exceptional family, thereby building a sense of collective pride and purpose that incorporates the child with special needs, as well as everyone else. Resilient exceptional families work together to build hope and optimism, finding joy and gratitude in the context of stressful situations. These processes take time and effort and persistence. But, fortunately, we know that protective processes can be powerful and offset a number of risk processes—they don’t have equal weights on the scale.
For the exceptional family, there are many ups and downs: the fear of what is to come, the challenges of life transitions, and the joys of reaching important milestones. Most of us were not prepared to hear that our child has special needs. We were blindsided by the news and felt that our world was falling apart. It is important to realize, however, that risk is not destiny. By building our own and our family’s resilience, we can help tip the scale in a positive direction.