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Parenting Children With Disabilities

By Marion C. Fish, PhD, NCSP
Queens College, City University of New York

All parents want to have a family that meets the needs of its members. Children are family members who bring challenges and responsibilities to their families that can be positive as well as negative.

Members of a family influence each other, and the presence of a child with a disability in a family has an impact on the way the family functions. Often, it is assumed that all families respond in the same way to a child with a disability, but we know that families respond in many different ways. A number of factors affect how a family responds, and it is important that families have information that can help them make good decisions for their children. Most important, although families differ in the way they adapt to the challenge of having a child with a disability, most families meet this challenge successfully.

This handout will consider some factors that may affect parenting a child with a disability, address areas where families of children with disabilities have common experiences, and provide some strategies for effective parenting.

Factors Affecting Parenting a Child With a Disability

Nature of the disability. Each type of disability has its own characteristics and behaviors that affect the family’s functioning. For example, an obvious disability (such as a physical impairment) may affect not only the way a child feels about himself or herself, but also the attitudes of parents, brothers and sisters, and others in the community. Severe disabilities that are more visible may cause others to excuse inappropriate behavior or may lead to a child being isolated socially. Language and speech disorders may affect everyday communication and be frustrating for both the child and others. Emotional disorders, autism, and Attention Deficit Hyperactivity Disorder often prompt behavior concerns. Disabilities with uncertain outcomes may be emotionally stressful for families because parents may keep searching for appropriate treatment. Most important in all disabilities are the behaviors of the child, which affect the family’s response.

Cultural background. Culture refers to beliefs, attitudes, and values of a family and may stem from ethnic background and/or religion. Culture also relates to geographic location, and different regions of the country may have different values. Culture is part of all aspects of family life including how the child is raised, and beliefs about education, health care, and seeking support outside the family. Some cultures are more accepting of disability than others, and still other cultures view disabilities as a private matter or may even consider them shameful. Cultural groups that place great importance on their place of worship may find their church, synagogue, or mosque helpful for social support in times of need.

Type of family structure. There is considerable variation in families: single parent, two-parent, same-sex parent, and stepparent families, as well as grandparents and unrelated live-in members. The number of children and their ages also contribute to different types of families. Family structure refers not only to its members, but also to how the family is organized. Each type of family has characteristics that will affect the response to the child with the disability.

For example, while the responsibilities of the single-parent family are the same as the two-parent family, there is only one parent available to do the work of two. This may result in great strain on the family system. Or, the presence of an older sister or brother may mean that the older sibling has more extensive caretaking responsibilities.

Developmental stage of family and child. Families progress through stages of development called the family life cycle. There are major points where parents must confront limitations and strengths of their children. These are at preschool age (3–5 years), school age (6–11 years), adolescence (12–18 years), and adulthood (19–21 years). Each developmental stage requires different responses from the family.

During the early years, for example, parents of a child with delayed development are concerned about physical health and safety and readjusting their expectations. During puberty, however, parents become more concerned by the differences between their child’s physical appearance and the child’s reasoning abilities and social judgment.

Coping skills. Families have a variety of coping styles that vary in their effectiveness. There is research evidence that children with disabilities are more likely to be neglected or abused than other children. Children with behavioral difficulties are even more likely to suffer from maltreatment. Some characteristics that are associated with healthy coping include open and direct communication among family members and supportiveness of family members toward each other.

Common Issues for Families of Children With Disabilities

Families of children with disabilities have a number of common experiences that have economic and social consequences.

Economic concerns. Usually a family spend more money on their child with disabilities than on their other children. Expenses related to a child with a disability often result in financial hardship. Even with insurance, there is medical care, therapy, childcare, special equipment, transportation, laundry, and structural modifications for the home to accommodate a child or to repair damage, not to mention tutoring or summer programs or a special computer. Often there is lost work time or interference with career advancement.

Daily care needs. The physical and health needs of children with disabilities often require great effort, particularly when the disabilities are severe or the illnesses are chronic. Daily care includes bathing, dressing, toileting, and feeding as well as cooking, cleaning, washing, and taking care of the household. Going to the doctor, to the supermarket, or to a fast food restaurant can be a major undertaking. As children get older, it may become more difficult for parents to accomplish certain tasks such as dressing, moving the child in and out of transportation, and moving from place to place. Daily care over many years can lead to increased parental stress.

Social and recreational opportunities. Parents who have a child with a disability do not have as much leisure time and have fewer social interactions with friends. Often, parents have a feeling of isolation; it is more difficult to go on family trips, out to dinner, or to the movies. Parents may have difficulty finding a babysitter or caregiver who is specially trained. Also, negative attitudes of community members may be a barrier to families. Parents are often concerned that their children will be rejected by other children.

Future planning considerations. Concern about the future begins when parents first suspect that something is wrong. Parents are uncertain about their child’s future with regard to employment, social life, legal and financial needs, and what will happen if something happens to them. Parents are concerned about the future health and safety of the child. Thus, a major issue for all parents is planning for the child when he or she becomes an adult or is no longer eligible for mandated educational services. When the child moves after age 21 to adult services, the parent often has to contact each agency individually to inquire about services. The parents’ role may need to be even more proactive because the educational system is no longer involved.

Strategies for Parents to Support Children and Families

Although each family situation is unique, there are some strategies that can help parents of children with disabilities address the concerns described above. The websites and publications listed below in the “Resource” section may also be useful.

Family Relationships

Share both verbal and physical affection within the family.
Provide unconditional love for children; accept and appreciate them whatever their disability.
Identify family strengths and where help is needed.
Keep communication among family members clear and open (for example, make sure brothers and sisters are kept informed). Encourage problemsolving discussions.
Be involved in decision making for your child.
Support all members of the family. Recognize issues related to brothers and sisters including feelings of resentment, responsibility, concern about the future, embarrassment, or loneliness.
Take care of your own social and emotional health.

Economic and Daily Care Needs

Identify areas of need (medical services, childcare).
Identify resources available to the family.
Arrange for financial planning. Get information about financial benefits the family is entitled to receive (Social Security).
Identify and contact resources for health care (medical insurance companies, Medicaid, Medicare).
Identify organizations that provide support services. Use the Internet to find support groups and services (vocational rehabilitation services).
Seek legal advice about special needs trusts designed for families of children with disabilities when children are young. These trusts provide for children when parents are no longer alive and require specific legal language for the trust.

Socialization and Recreational Needs

Join a support group for parents.
Identify support networks that fit your needs including family, the schools, religious organizations, and government services.
Locate respite services through local organizations.
Share babysitting with another parent.
Identify local organizations that have recreational activities such as the YMCA or a Boys or Girls Club.

Educational Needs

Have clear information about the disability and the educational and behavioral implications.
Have clear information about your legal rights as a parent.
Maintain good communication with the school and the classroom teacher.
Be involved in school decision making for your child.

Resources

Seligman, M., & Darling, R. B. (1999). Ordinary families, special children: A systems approach to childhood disability (2nd ed.) New York: Guilford. ISBN: 1572304669.

Turnbull, A., & Turnbull, R. (2001). Families, professionals, and exceptionality: Collaborating for empowerment (4th ed). Upper Saddle River, NJ: Merrill Prentice Hall. ISBN: 0130163031. (An excellent appendix in this book lists organizations and resources by states.)

Websites

Beach Center on Families and Disability— www.beachcenter.org

National Dissemination Center for Children With Disabilities (formerly the National Information Center for Children and Youth with Disabilities, NICHCY)—www.nichcy.org

Parent Advocacy Coalition for Education Rights (PACER)—www.pacer.org

This handout is adapted from Marion C. Fish (1990). Best practices in family-school relationships. In A. Thomas & J. Grimes (Eds.), Best Practices in School Psychology II. Washington, DC: National Association of School Psychologists; and Marion C. Fish (2002). Best practices in collaborating with parents of children with disabilities. In A. Thomas & J. Grimes (Eds.), Best Practices in School Psychology IV. Bethesda, MD: National Association of School Psychologists.