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  Access Today, Spring 2005 - Special Volume, Issue 17


Becoming a Resilient Family: Child Disability and the Family System

By C. Amber Havens
National Center on Accessibility

“…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” (Dickman & Gordon, 1985, p. 109).

Today’s parents face a world of challenges with everything from keeping themselves healthy and happy to providing their children a safe environment that fosters the physical, emotional and social growth of their children in today’s society. Sometimes the everyday demands of life seem too great to overcome and families will experience stress and/or crisis as they try to survive. Often families will fall apart or choose to split up the family unit in response to money struggles, addictions, abuse, health, or just plain unhappiness. It is no surprise then to learn that having a child with a disability can also drive families apart or into a state of chronic stress or crisis. This does not have to be the case. This article addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become a more resilient and healthy family.

CHILD DISABILITY

According to Dr. Robert Naseef (1997) one of every ten children is born with a disability. An individual is considered to have a disability if they have a physical or mental impairment that substantially limits one or more major life activities such as: seeing, hearing, speaking, walking, breathing, performing manual tasks, learning, caring for oneself, and working (U.S. Department of Justice, 1992).

In addition to the stress of the disability itself, financial strain due to medical bills or quality care, lack of control, egos, attitudes, isolation, anger, embarrassment, grief, and protectiveness all merge to bombard the family of a child with a disability. Without a safety net in the family…crisis may loom. These types of certain continuous challenges can be a reaction to the disability itself, the stress and strain the disability creates within the family unit or a family member's reaction to the child with the disability. Regardless of the type of disability, parents must learn to cope with the fact that their child will never fulfill the life they had hoped and dreamed of for them. The journey is long and many families will not make it together.

Text Box: Insert sidebar:    Keys to Resilient Families  •	Communication  •	Making time a priority  •	Keeping perspective  •	Building a support network  •	Seeking professional assistance  •	Respite  •	Play!

INTERNAL DYNAMICS OF THE FAMILY SYSTEM

Marital Strain

In a marriage relationship that is unstable, the stress of dealing with a child's disability can cause the family system to collapse; on the other hand, in a relationship that is strong and relatively non-stressed, a child's disability may develop increased closeness and strength in the parent's marriage. While there is a general impression that parents who have a child with a disability are more likely to split up than parents of “normal” children, there has been limited research in this area and it is inconclusive.

Although several studies have documented stress in families of children with disability (Hodapp & Krasner, 1995; Innocenti & Kwisun, 1992; McCubbin & Huang, 1989; Singer & Farkas, 1989; Taanila, Syrjala, Kokkonen, & Jarvelin, 2002; Tavormina, Boll, Dunn, Luscomb, & Taylor, 1981; Wallander & Noojin, 1995; and Ziolko, 1991) and stress is often a factor in divorce, none have conclusively linked disability or chronic illness of children to parental divorce. There are different reports concerning divorce rates of parents who have children with disabilities, but most studies agree that there is a high level of marital discord in these families and that divorce or separation is more likely in families of children with more severe and impacting types of disabilities (Hodapp & Krasner, 1995).

Hodapp and Krasner (1995) found in their study that families of eighth grade students with disabilities in a large, nationwide sample had higher rates of divorce and separation as compared to families of non-disabled children. Singer and Farkas (1989) in a study of the impact of infant disability on maternal stress perceptions found that 85% of their respondents reported that despite problems the family experienced as a result of the disability, their families were closer because of their shared experience.

When people decide to have children there is typically great joy at the impending life they are bringing into the world. That elation and hope for the future can come to a crashing halt when a baby is born with a disability. For many this is too much to bear and sorrow and grief begin as the realization of lost hopes and dreams sets in. Often parents of newborns with severe disabilities are advised to institutionalize their baby or risk destroying their marriage (Dickman & Gordon, 1985). The parents of older children who acquire a disability or become chronically ill also deal with grief and sorrow of lost hopes and dreams. Parents will often feel a deep sense of guilt as if they have caused the disability or disease and will begin the long process of coming to terms with not only their child's disability but with their personal emotions and those of other family members such as siblings, grandparents, aunts, and uncles.

A family who has a child with a disability will experience many challenges such as “repeated physical and emotional crises, interactive family issues, ruined schedules, and additional expenses which can create financial burdens for a family,” (Lavin, 2001, p. 21). It may be during these times of physical and emotional stress that parents will take out their frustrations on each other, the other children or even the child with the disability or illness. This can lead to marital problems as well as issues of sibling rivalry, parentification, and even child abuse.

Sibling Strain

Siblings may share the same emotions that parents feel (i.e. grief, anger, and guilt) and some of these arise from fear and misunderstanding (Batshaw, 1991). Siblings may be afraid that they can “catch” the disability or that they even caused their sibling's disability by wishing mom was not going to have a new baby or that it would just go away (Batshaw, 1991). Siblings may also feel jealous and left out as the child with the disability will require more attention to attend to everyday needs (Pearson & Sternberg, 1986). Other parents and sometimes siblings may be embarrassed about having a child or sibling with a disability; they may lash out at the child with the disability or illness in harmful abusive ways for disrupting their families and adding stress to the family situation.

To avoid dealing with marital problems, some parents will turn most of their attention to the affected child to avoid dealing with their spouse or other children. This can make things worse by creating an unhealthy bond between the parent and child taking the focus off their relationship and placing it on the child's illness or disability (Lavin, 2001).

FAMILY RESILIENCE

Irving Dickman and Dr. Sol Gordon (1985, p. 109) share in their book One Miracle at a Time, that “it is not the child's disability that handicaps and disintegrates families; it is the way they react to it and to each other.” Finding a way to deal with the added stresses, minimize them, overcome them – by sharing them – can glue a marriage (and a family) together more firmly than ever.” Dickman and Gordon (1985) also share that all families need to have a coping mechanism and those families who utilize these as their safety net are more likely to survive as an intact family unit.

“By taking care of each other and your relationship you are not only working toward the future you really want, you are giving your children the benefit of a stable, loving home to grow up in. Build on what you already have. Know that seeking the support of professionals and other parents who have lived through what you are experiencing is a sign of strength, not weakness. However, if your family unit separates, you can each still go on to build full and productive lives” (Albrecht, 1995, p. 24). This is the key to becoming a special family; providing the children with a stable family system.

According to Winslow, Wolchik, and Sander (2004) most children will adapt well to the transition of divorce, but nearly 20% to 25% will develop mental health or adjustment problems later in life. For the child who has a disability and already struggles with self-esteem and identity issues (Lavin, 2001) not to mention the daily challenges of their disability, this transition may overload them. This makes it critical for families of children with disability to pull together. So what can families of a child with a disability do to thrive in a situation of chronic stress?

Walsh (1998) and Boss (2002) both suggest that strategies for facilitating resilience in families experiencing chronic stress situations include opening up channels of communication, seeking professional help (counseling or support groups), making time for each other (spouse and other children) a priority, keeping perspective, developing a support network, and embracing respite. While this list is pretty comprehensive, there is something else that families can do to be resilient…Families can play

Communication

One of the most important aspects of any human relationship is communication. Communication is the giving and receiving of information for understanding between two or more people. If parents are trying to hang on to their marriage, this is key to coping as a couple. They should share their feelings with one another, so that the other partner does not have to make assumptions or guess as to what the other is feeling. Holding in emotions, thoughts and feelings will protect no one and will more likely make both partners feel isolated when they are already hurting (Albrecht, 1995).

Communication is also the sharing of information. You should share the child's disability, illness, diagnosis, doctor's report, and other important information with family members. This is important for all family members who are involved in the child with the disability's life to be on the same page as how to best meet and understand the needs of the child.

Since siblings may feel jealous, embarrassed and naturally left out due to the extent of attention given to the child with the disability or chronic illness, it is important to educate siblings and other family members so that they may increase their understanding and acceptance of the sibling with the disability or illness. Although educating family members can seem like a challenging task it can be a fast, easy, and painless process. It is important to note that education should be an ongoing process; as a child naturally grows and changes, so might their disability or illness.

In the beginning, many family members may be overwhelmed by the diagnosis and need to hear it directly from the family doctor. Many physicians are open to meeting with families and addressing any questions members might have about the child's disability or illness. If the parents are not comfortable in taking their entire family along to the next doctor's appointment, they might request family members to write down all the questions they have, and once the parents have the answers they can call a family meeting and share the new information with all interested.

Parents can also encourage family members to educate themselves through reading materials. For many parents, this might be readings suggested by their physician. The local library is always a great place to start for readings related to disability and family. When sharing new readings with family members, make sure that it is age-appropriate material. There are many children's books that relate the specifics of disability in a way that is understandable and non-frightening to children. This may be key in helping siblings grasp what they are dealing with.

Seek Professional Help

Counseling for individuals or groups may be beneficial to the family unit regardless of marital status. Counseling can offer comfort in knowing that the emotions, attitudes and feelings of the family members are all “normal” to have (Dickman & Gordon, 1985). Counseling can offer family members the opportunity to redirect their emotions into something positive for the family unit and the best interest of the children.

Individual and group counseling can take place with psychiatrists, psychologists, or within a support group of people who have similar experiences. Parents may need assistance deciding what level of support they need from counseling. Doctors, nurses, school officials, other helping professionals, and friends are all good resources to determine where support can be found that has potential to meet the needs of a particular family.

Support groups can be beneficial to the husband-wife team as they meet with other husband-wife groups who have lived their current experience and can provide valuable insights or just listen to what a couple is dealing with. Support groups can also be a valuable tool for the single parent or the sibling who needs someone to listen to them and give them emotional support as they deal with their families situations. Listings of support groups can often be found in healthcare settings (i.e. doctor's office, hospital, clinic, and counseling facilities), schools, churches, bookstores, and the internet.

Making Time a Priority

For parents of a child with a disability, time is a rare gift. Making time for each other, as man and wife not just mom and dad, should be a priority in parenting a child with a disability and key for keeping the marriage intact and healthy. It does not have to be anything fancy, but always make time for each other. Go for a walk in the park, hole up in the bedroom for a few hours, visit a library, go to a movie, etc…just spend time together. Parents should think about what they really need to take care of their relationship and plan ahead to make it happen (Albrecht, 1995).

Making time for the other children should be a priority also. Siblings need to know that they are special, valuable, loved and don't always come second. Encourage them to embrace their childhood, thank them for all the help they give around the house, and acknowledge their feelings (Albrecht, 1995; Dickman & Gordon, 1985; and Lavin, 2001).

Keep Perspective

As a parent of a child with a disability or chronic illness, the emotions experienced are likely to be the strongest they will ever have and these feelings may be confusing (Albrecht, 1995) as they juggle feelings of anger, grief, protectiveness, and love all jumbled together. If the strain of crumbling relationships is added into this already challenging mix it may be too much stress for individual family members to handle causing the family system to collapse. It is important to recognize personal feelings and emotions, try to find a balance, and remember it can always be worse.

Develop a Support Network

As parents of a child with a disability the most valuable resource available is the family's support network (Dickman & Gordon, 1985; Walsh, 1998). Family members, medical and helping professionals, friends, support groups, trained baby-sitters, etc… In trying times the social network can step in when parents, siblings, or caregivers need a break or help fill in the gaps of the family to meet the needs of other family members.

Embrace Respite

Respite is time away from the disability and or stress of family, where individual or group family members can focus on themselves or other family members who are affected by the child's disability. Respite may also be needed by the child with the disability or the siblings, time away from the family who is so focused on providing for all the “special” needs that they overlook the child's need for time away from focusing on their disability (Naseef, 1997). There are two types of respite experiences: 1.) formal respite experiences through state programs or camp environments; or 2.) non-formal respite utilizing the support network.

Formal respite :

Formal respite is created through using organized programs such as state programs, camps, and special recreation programs. Today, many states offer waivers for respite care. This varies from state to state and is tied up with Medicaid programs. Basically, this program pays a qualified and trained caregiver to look after the person with the disability, giving all parties needed time away from each other. Many organized camping programs offer specialized respite weekends where the child with a disability can go to camp for the weekend. The American Camp Association ( www.aca.com ) is a resource for accredited camps in the United States . Specialized recreation programs can be found by contacting the local Recreation and Parks Department or special services agencies. The National Respite Locator service ( www.respitelocator.org/index.htm ) is also a great online resource for finding respite programs.

Non-formal respite :

Non-formal respite is created through utilizing the support network. This can be having a family member stay with the children while the parents take a vacation, shopping trip, etc… Be creative.

Play

Through recreation and leisure experiences families have opportunities to experience self-actualization, creatively express themselves, build family unity, be healthier, build esteem of the individual members and of the collective family, reduce stress, conquer boredom, and socialize with each other while extending their social network by making new friends outside of the family (New York State Recreation & Park Society, 2004).

Leisure, recreation and play should be an important component of any child's life, this should be no different for the child with a disability. Children learn important life skills through play. Parents teach children important lessons in recreation and leisure times.

For the family of a child with a disability, some may think that due to the nature of the child's disability that their child cannot or should not participate in leisure activities for fear of them getting hurt physically or emotionally. For other families, parents may not know how or where to get their child involved in these types of activities. The healthy family knows that “those who play together stay together”.

Families in need of assistance in planning or partaking of recreation activities can often find great resources through community institutions such as the local Recreation and Parks Departments, day care centers, human service agencies and even their personal physicians. Other recreation resources can be found at the National Center on Accessibility ( www.ncaonline.org ), the National Center on Physical Activity and Disability ( www.ncpad.org ), and other online resources such as Family Village ( www.familyvillage.wisc.edu/Leisure/information.html ) and Disability and Business Technical Assistance Centers ( www.adata.org/centers.htm ).

In conclusion, having a child with a disability is not a catastrophe for a family system and does not have to be devastating for the parents, siblings or child with a disability. With the right mindset, support system, and a little fun the family of a child with a disability can learn ways to deal with and overcome chronic stress in order to not only survive but thrive.

About this Monograph

These materials were developed by the National Center on Accessibility for the National Center on Physical Activity and Disability under sponsorship of the Centers for Disease Control and Prevention.

About the Author

C. Amber Havens is a doctoral student at Indiana University specializing in leisure behavior. She received her undergraduate degree in therapeutic recreation from Arkansas Tech University and her graduate degree from Indiana University .


Recommended Reading for Adult Family Members:

- Albrecht, D.G. (1995). Raising a child who has a physical disability . New York :

John Wiley & Sons, Inc.

- Batshaw, M.L. (1991). Your child has a disability: A complete sourcebook of

daily and medical care. Boston , MA : Little, Brown and Company.

- Dickman, I. , & Gordon, S. (1985). One miracle at a time: How to get help for

your disabled child – from the experience of other parents . New York :

Simon and Schuster.

- Lavin, J.L. (2001). Special kids need special parents: A resource for parents of

children with special needs. New York : The Berkley Publishing Group.

- Naseef, R. A. (1997). Special children, challenged parents: The struggles and

rewards of raising a child with a disability . Secaucus , N.J. : Carol

Publishing Group.

 

Recommended Reading for Child Family Members:

- Brown, T. (1995). Someone special, just like you. Henry Holt & Company.

- DeLoach, K. (2004). Daniel's world: A book about children with disabilities.

- Stuve-Bodeen, S. (1998). We'll Paint the Octopus Red. Woodbine House.

- Thomas, P. (2002). Don't call me special: A first look at disability. Barron's

Educational Series.   

 

References for Monograph

- Albrecht, D.G. (1995). Raising a child who has a physical disability . New York :

John Wiley & Sons, Inc.

- Batshaw, M.L. (1991). Your child has a disability: A complete sourcebook of

daily and medical care. Boston , MA : Little, Brown and Company.

- Boss, P. (2002). Family stress management: A contextual approach (2 nd Ed.) .

University of Minnesota ; Sage Publications, Inc.

- Dickman, I. , & Gordon, S. (1985). One miracle at a time: How to get help for

your disabled child – from the experience of other parents . New York :

Simon and Schuster.

- Family Village , www.familyvillage.wisc.edu/Leisure/information.html .

- Hodapp, R. M., & Krasner, D. V. (1995). Families of children with disabilities:

findings from a national sample of eighth-grade students. Exceptionality,

5, (32) , 71-81.

- Innocenti, M.S., & Kwisun, H. (1992). Families of children with disabilities:

Normative data and other considerations on parenting stress. Topics in

Early Childhood Special Education, 12, (3) , 403-427.

- Lavin, J.L. (2001). Special kids need special parents: A resource for parents of

children with special needs. New York : The Berkley Publishing Group.

- McCubbin, M.A., & Huang, S.T. (1989). Family strengths in the care of

handicapped children: Targets for intervention. Family Relations, 38 ,

436-443.Naseef, R. A. (1997). Special children, challenged parents: The struggles and

rewards of raising a child with a disability . Secaucus , N.J. : Carol

Publishing Group.

- National Center on Accessibility, www.ncaonline.org .

- National Center on Physical Activity and Disability, www.ncpad.org .

New York State Recreation & Park Society (2004). Parks and recreation the

benefits are endless… Retrieved November 8, 2004 from

http://www.nysrps.org/benefits.shtml .

- Pearson, J.E., & Sternberg, A. (1986). A mutual-help project for families of

handicapped children. Journal of Counseling and Development, 65, 213-

215.

- Singer, L. & Farkas, K. J. (1989). The impact of infant disability on maternal

perception of stress. Family Relations, 38 , 444-449.

- Taanila, A., Syrjala, L., Kokkonen, J., & Jarvelin, M.R. (2002). Coping of parents

with physically and or intellectually disabled children. Child: Care, Health

& Development, 28, (1) , 73-86.

- Tavormina, J., Boll, Dunn, R., Luscomb, & Taylor, J. (1981). Psychosocial

effects on parents of raising a physically handicapped child. Journal of

Abnormal Child Psychology, 9 , 121-131.

- U.S. Department of Justice (1992). Americans with Disabilities Act . Retrieved

June 10, 2004 from http://www.usdoj.gov/crt/ada/adahom1.htm .

- Wallander, J.L., & Noojin, A.B. (1995). Mothers' report of stressful experiences

related to having a child with a physical disability . Children's Health Care,

24, (4) , 245-256.

- Walsh, F. (1998). Strengthening Family Resilience. New York : The Guilford

Press.

- Winslow, E.B., Wolchik, S.A., & Sander, I. (2004). Preventive interventions for

children of divorce. Psychiatric Times, February 2004 , 45-48.

- Ziolko , M.E. (1991). Counseling parents of children with disabilities: A review of

the literature and implications for practice. Journal of Rehabilitation,

April/May/June , 29-34.

 

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