I’ve worked with families for over 40 years, many of whom are parents raising children with special health care needs. It’s been a privilege to do so. They have taught me about courage, patience, and unconditional love. They have also given me an understanding about factors that promote family resilience, defined here as “the ability to bounce back, to rebound in the face of life’s stresses and pressures -- to land on one’s feet and continue to move forward.”

What is it about some families that not only cope with life’s stresses but they flourish, while others struggle? Some families are made stronger, while others flounder. Are there factors that can be isolated and taught to enhance the well being of all families and family members? An increasing body of research says there is.

Families have changed dramatically in the past 20 years. The so-called “typical” family does not really exist. Single parent homes are on the rise; homes where grandparents constitute the primary caregivers are increasingly common. Full custodial, father-led homes are one of the fastest growing populations in the U.S. For economic and personal reasons, increasing numbers of families are at-risk for problems, including depression, addiction, and abuse.

The famous sociologist, Urie Bronfenbrenner, once wrote “A family is a group of people who make an irrational commitment to each other’s well being to the point of making each other crazy.” While his remark is humorous, it also contains great truth. Families strive to do the best they can, with many facing a scarcity of personal, social and economic resources. For the purposes of this article, family will be defined as “anyone who play a positive role in the life of a child” - emotional, physical, spiritual, or financial. It could be the biological parents, an extended family member, a teacher, neighbor or church member. Indeed, it “does take a village to raise a child” these days.

Families are like mobiles; they are all interconnected and interdependent; what happens to one member impacts everyone else. I remember watching “60 Minutes” a few years ago and Mike Wallace was interviewing a family whose child was born with genetic anomalies due to the mother’s use of the drug, Thalidomide. The son - in his 30’s - had undersized arms and legs and was in a wheelchair. He talked about the difficulties of growing up, but felt he had overcome many obstacles and lived with independence and respect. While the young man did not deny there were difficulties, he felt his disabilities had been essentially surmounted.

However, the mother gave another picture of the family. Her husband had died five years before, from the effects of high blood pressure and a heart attack. The mother said “the stresses of raising our son is what really killed him. He was not a man who openly shared his feelings, and the stresses of constantly providing for his needs, and the needs of the rest of the family, were often overwhelming to him.” She talked about how lonely she was now that he was gone. She also had two daughters; one had left home at age 16, the other at 18. She had little contact with them since their leaving, as they felt great resentment and anger about the energy and time that had gone into raising their brother. They felt they had been neglected and asked to serve in the role of a second parent. With a look of despair and profound sadness, the mother declared, “Isn’t it a shame that the only person who turned out okay was the person with the disability.”

This story provides us many insights about the impact of raising a child with special needs and what enhances or detracts from family resilience. Let us examine three areas:

1) The places where stresses most likely will occur when a child is diagnosed with a disability;
2) Mother and father reactions - how their responses might be the same or be different; and
3) What will be most helpful, as a couple, and as a family; what will build family resilience?

When a child is diagnosed with a chronic illness or developmental disability, almost all family members experience guilt, anger, sadness, depression, and periods of denial. “This can’t be happening to us.” “What did we do to deserve this?” “Why has God turned his back on us?” Nancy Miller, author of Nobody’s Perfect, calls this the “survival” stage. 1 Families live for the moment, coping with constant confusion, the ebb and flow of feelings, and view the future with great concern and anxiety. This period can be brief or very lengthy. Common responses to this survival period include:

• One parent becomes the “designated expert,” typically the mother. If a father is in the home, he might feel “left behind,” both in knowledge of the child’s condition, but also in his relationship with his partner. Lines of communication regarding the child may become strained, particularly if their decisions and roles become stratified and inflexible.

• The potential for over-involvement of one parent with the child is a distinct possibility. There are so many “must do’s” in regards to therapies, medical appointments, schooling issues. There never seems to be enough time in the day to accomplish everything. Time to nurture one’s primary relationship is often secondary to the health and well being of the child, with the resultant feelings of resentment, confusion and anger. Favorite activities are missed, a reduced sex life for the couple often occurs. The primary topic of discussion is almost always the child.

• If there are other children in the household, they will need to understand how they fit into this “new” family. They will often experience confusion, guilt (“did I cause this?”), resentment (with double standards for the child with special need often provoking such feelings), and fear about the future and whether they might need to be the child’s permanent custodian.

• Financial issues may also seem overwhelming, particularly if the family lacks adequate insurance and faces enormous bills. I think of the family in our program whose twin sons incurred over 8 million dollars in medical costs. Managed care often does not pay for the services of specialists nor necessarily make them available to families. There is generally a limit (cap) to how much an insurance company will pay.

• The world of disabilities can be a maze of regulations, acronyms and language, guaranteed to confuse, startle and bewilder. There are few central sources of information nor “one stop” shopping. A child with special needs does not come with a manual for parenting, and finding services can be a full time chore, particularly if one lives in a rural setting.

• The cultural context of a family is crucial. What does the family believe about disability and how s/he “should” be handled? Does their religious faith help or hinder? Is the child seen as a blessing, a curse, “a gift from God,” or the result of some personal failure? One man bluntly asked a rhetorical question, “God doesn’t make junk, does He?”

All of us bring dreams and expectations to our children. We want them to grow up healthy, live independently, be educated, and achieve great success. A child with special needs can threaten such dreams. Every family I have ever worked with can talk at length about the day they learned their child was diagnosed. It is a pain one forever carries in your heart. While the pain lessens over time, it often reoccurs and manifests itself in a variety of ways. The emotions associated with this pain can vary according to person and background, but for most it involves sadness (at times, despair), fear and anger. At times it feels as if everything is caving in on us, and parents experience long nights, long weeks -- and yes, long years. I’ve often heard the experience referred to in metaphorical terms, “cloudy days,” “dark nights,” “a loss of light.”

As adults we know that life is not a fair process, and the ups and downs of living are an equal opportunity affair. Yet, when something as outrageous as having a child with special needs occurs, many families do battle with issues of justice in the universe. I think of a family whose first son contracted an infection when the boy was just a few weeks old; the result was profound developmental delays. Their second child, a daughter, was born full term and in perfect health. Yet within a few months she had to have an eye removed due to cancer. All of us were literally left speechless. “How could this happen to them?” “Haven’t they already paid their dues?” “Why do some people seem to get off scott free?” Of course there are no answers to such questions, yet the frustration engendered by such thoughts can be very powerful. Jack Neafsey wrote some comical “Laws to Remember.” Two of my favorites include: “There are days when no matter which way you spit, it’s upwind.” He calls that “the first law of reality”). His second law is: “Whatever it is that hits the fan, it will not be evenly distributed.” 2 We can laugh at these, but the pain such “injustice” provokes is real and often overwhelming. Indeed, life should be “fair,” or at least equitable for all. Such concerns may threaten our core spiritual beliefs.

A recent Canadian study completed a longitudinal study of hundreds of families and the stresses they experience as parents of children with special needs. Their conclusions included:
- 88% of parents reported feeling tired or overloaded, and 90% stated they were stressed about balancing work and family obligations;
- 39% reported their employment status had been affected;
- 26% reported their choice of occupation had been constrained;
- 46% said their work schedules had been affected;
- 68% had turned down overtime;
- 27% had to forgo opportunities for promotion;
- 64% of two-parent families with one parent unemployed reported their child’s special needs were a major factor in their unemployment. 3

Many families feel they are barely staying ahead in the race. It is no wonder that Robert Perske, author of numerous books on disabilities, says that parents of disabled children often experience “the speeds.” They run around, always taking care of their children, but rarely take time for themselves. At its worst, disabilities can be “crazy making.” For me, having lived with rheumatoid arthritis for 45 years, I still get angry almost every morning trying to put on my “damn socks.” The ups and downs are like a roller coaster ride, and we don’t know if and when “the ride” will ever end.

For most parents thoughts about the future are a major concern. Will my child finish school; where will s/he live? What about employment? Are our plans for retirement in jeopardy? What happens when we can no longer care for our child? What if no one wants to be our child’s guardian? Should we have more children? Will life ever return to “normal”? These are tough questions, and the answers come slowly -- and often with emotional pain.

Peter Steinglass, a noted Canadian researcher, published his findings about families raising children with special needs in an issue of Family Process. When responding to chronic illness and disability, families will:
• Experience guilt, anger, disappointment, helplessness and resentment;
• Talk about "the problem," but rarely talk about the impact of the problem on the family;
• Will organize to handle the problem but find it difficult to change;
• Discover that the chronic illness/disability becomes a "family member" and may take over the family. He compares this family member to "a two year old terrorist";
• Some families may actually function better after the crisis; and
• Some families who are functioning the best are seen as problem makers by providers. These families exhibit strong problem-solving skills and are risk takers. They know they are the true experts regarding their children, and they will take control and strongly advocate for their particular needs. 4

Steinglass’ findings reveal several important ideas. The sheer power of disability in shaping families is evident, so powerful it may actually take on a personality of its own. My wife has referred to my rheumatoid arthritis as “a demon” in our lives due to its negative impact. The power of emotional response is obvious, but the ability to share that emotional “impact” is difficult. One is left to question the “why” of this. Are the emotional responses so painful family members are afraid to speak openly about them? Do family members limit their responses so as not to alarm or concern others? Do we always need to be strong for others so they can handle their feelings in the open?

Gender differences come into play. We know that mothers and fathers parent quite differently. Mothers typically are nurturing, even protective in their response to children. Men are usually very physical in their father-child interactions, and often want a child to exhibit levels of independence and problem-solving. Mothers hold infants inward to protect them. Men often carry young children on their shoulders and playfully throw them in the air. Such differences are generally valuable and often complementary.

Parenting a child with special needs, however, can intensify and exacerbate such differences, what one parent called “turning up the volume on our relationship.” Issues such as proper feeding and child discipline can create tension. Grieving losses can produce very different responses. Women often freely express their emotions; many men hold them in. Women are relational and reach out to others for comfort and understanding. Men often choose to “go it alone” and choose a more stoic path to follow - the John Wayne mentality. “I am strong and don’t need any help” is a powerful injunction that many men embrace. Such a reaction is reinforced when we view the response to the Oklahoma bombing tragedy several years ago. Upon entering the memorial service, women received roses, children received teddy bears, and men received nothing. The statement is clear: "Men, you are on your own." Many fathers suffer in silence, not knowing that what they are experiencing is similar to other men, and that their anger is really a cover for fear and sadness. Clearly, both parents need to be engaged in caring for the child with special needs, and they also need to be focused on enhancing their interpersonal relationship. Finding such a balance can be difficult.

Peter Steinglass concludes that “Some families may actually function better after the crisis.” What are the components that comprise this growth? What have they learned about family resilience? What enhances a family’s ability to cope, and even transform themselves into a stronger family unit?

The power of perception and attitude is viewed as a powerful indicator of family well being. Family resilience always starts with attitude. We generally receive what we expect, and our personal expectations dictate our behaviors. Without being overly simplistic or fanciful, living well with a disability is greatly determined by “how you look at it.” Researchers talk about “the power of positive expectations.” and well being. In a major study regarding families of children with profound disabil-ities, two University of Washington researchers, Karen Frey and Pat Vadasy, concluded: “Parental beliefs were the single most powerful predictor of family outcomes in coping with disability.” Beliefs about parental ability to “control their own lives” and believing in their ability to “cope better than most” allowed for effective personal and family functioning. 5 Rather than focus on the continual negatives of disability, such families view the glass as “half full,” and they strive to integrate the difficult learnings into their lives in helpful ways. Countless families have remarked that they would never ever wish to have a child with a disability, but they know this child has made them better parents: more patient, understanding, and sensitive to the needs of others. They view their child as a “teacher,” and they don’t allow themselves to become bitter or cynical. People are able to “re-frame” problems and find creative solutions to the outcomes. It is complex work, but it can be life enhancing.

One dad used a Biblical allusion when talking about his child. He said, "You hit the Red Sea but it doesn’t part for you.” This loss of control can be overwhelming for many families. "That I can’t control the disability still leaves me confused. That I can’t seem to do anything about it just drives me crazy." Men, in particular, are taught to “fix” problems. A disability or chronic health condition generally cannot be fixed. Yet, resilient families avoid catastrophizing. They don’t gloss over the difficulties, but they also know that problems are solved one step at a time. The cartoonist, Gary Larson, showed a man sitting on his bed in the morning, with the sun streaming through the window; the caption read, “First pants, then your shoes.” So it is for many families. They know all things get solved one step at a time, that there is light at the end of the tunnel if they persevere and “keep the faith.” They are future-oriented, and often exhibit perseverance and faith. It is what the Danish theologian, Soren Kierkegaard, calls hope, “the passion for what is possible. It is not based upon reality as it is now, but on the reality as it might be tomorrow.” 6

An often used cliche has much truth to it -- “knowledge is power.” Resilient families are knowledgeable about their child’s disability, and in that knowledge they regain much personal control. They have a thorough awareness about treatment modalities, their legal rights, and schooling that speaks to their specific needs and concerns. They attend the I.E.P. and I.F.S.P. well prepared and are confident the outcomes will promote success for their child. Resilient families are indeed experts about their children and are not afraid to push for what they want. Our family mobiles take on new balance and we gain some equilibrium. Siblings, in particular, need the resources and knowledge they so richly deserve.

It is natural for parents to protect their children from pain and potential suffering, both physical and emotional. Yet in our desire to safeguard our kids with great vigilance and love, we potentially stop children from learning for themselves. Resilient families often ask this question, “What are we teaching our children about personal independence?” We owe our children a chance to make it on their own, and yes -- even to fall down, bruise themselves, and get back up again. That’s how we learn, and that’s how we gain personal confidence.

Sociologist Edwin Pratt, in discussing “The Energized Family,” says resilient families encourage autonomy in all family members, including the child with the special needs. We live in a society where we are constantly bombarded by losses, whether that be the loss of a job, a move to another state, illness and death or divorce, to name just a few. Grief is the natural process that helps us cope with such losses and maintain emotional health. All family members need places to grieve their losses. Grieving is not a one-time thing; we don’t just feel sad for awhile and then get on with our lives. It may take years before we make terms with some losses, and in those years we continually experience anger, sadness, depression, and denial. Researchers Wortman and Silver talk about "the myths of mourning." 7 "There are no discrete stages that all family members go through, nor does each member experience each stage." It is imperative all family members have times to share their feelings, to grieve. Siblings lose a brother and sister they always wanted; and grandparents grieve for two losses -- the loss of the perfect grandchild they hoped for, and the pain they know their own children are experiencing. Men, in particular, must learn that it’s okay to cry, to show sadness, to ask for help. Big boys indeed need to cry, and we will all be healthier because of it.

One often hears the saying that “what goes around comes around.” As a professional in the social service field, I know the world of disabilities is very small; if we cut too many ties they will come back to haunt us. Anger is so much a part of living with disability. It is tempting to blow people away, particularly health professionals who can’t “fix” our child or solve our most pressing needs. I’ve done it myself -- and I regret it. I remember the dad who boldly exclaimed to some parents that “I decked my Doc” (physically knocked him down). Health and education providers and families must be allies, not adversaries. We need each other. Parents know their children better anyone else; they are the experts. Providers have skills and experience that families truly need and desire. Resilient families exhibit a desire to collaborate in the best interests of the child -- they work together.

For many families raising children with special needs, spirituality is critically important, an anchor that keeps them grounded in the midst of many storms. They find an inner calm that lends balance to the outward struggles. They discover a higher power, however that may be defined -- sources of hope and peace. For some, reflective walks bring a necessary peace; others meditate or visit an art museum or attend a concert. Prayer and contemplation can restore a tired soul.

The literature about families is clear. The single greatest contributor to family resilience is the willingness to surround oneself with support. As a mental health counselor and a person living daily with a chronic illness, I know that isolation promotes helplessness. Simply stated, it is very, very tough to make it alone! Kids need other kids, and families need other families. In his comprehensive study of families, Edwin Pratt concluded that “those who handle disability, chronic illness without major disruption are characterized by varied and frequent intra-family interactions” -- in other words, they talk, share, and communicate with each other. What greater privilege than to be listened to, and to listen to others.

In moments of frustration and anger I will often say, “Life should be simpler.” It is then I need to remember that I must not be so hard on myself. Richard Carlson says, “Make peace with imperfection.” 8 Life is a matter of mistakes and learning from them. None of us are perfect. Above all, we need to enjoy our kids, enjoy ourselves, and mellow out. All children, including children with disabilities, are first and foremost children, and they radiate an innocence and joy that must be celebrated each and every day. Keep laughter and humor in your life, as it smoothes out many bumpy roads.

M. Scott Peck, in The Road Less Traveled, talks about finding the inner strength to confront our losses, and to gain the courage to be patient, to persevere, and renew our faith in this journey of discovery called life. He talks about the necessity of courage and says:

"Courage is not the absence of fear; it is the making of action in spite of fear." 9 May your journey be filled with much joy and understanding.

James May
March, 2001, © copyrighted material
Do not duplicate without the permission of the author, e-mail: jmay@seanet.com

References:

1 Miller, N (1994). Nobody’s Perfect: Living and growing with children who have special needs. Baltimore: Paul H. Brookes.

2 Neafsey, J. Laws to remember (from calendar of same name).

3 Journal of Canadian Statistical Data (1999).

4 Steinglass, P. Family Process, Pittsburgh, PA.

5 Frey, Fewell, Vadasy & Greenberg (1989). Topics in Early Childhood Education. p. 247.

6 Kierkegaard, S. (1986). Fear and trembling. New York: Penguin Classics.

7 Wortman, CB & Silver, RC (1989). The myths of coping with loss. Journal of Consulting Clinical Psychologists 57: 349-357.

8 Carlson, R (1997). Do not sweat the small stuff... and it is all small stuff. New York: Hyperion Press.

9 Peck, MS (1998). The road less traveled: A new psychology of love, traditional values and spiritual growth. New York: Simon and Schuster.