The Many Roles of the Exceptional Parent

Parents of children with disabilities, however, sometimes experience added stress caused by their child’s physical, emotional, and financial demands. Educators who are not parents of a child with disabilities, chronic illness, or severe problem behavior cannot possibly know the 24-hour, 7-day reality of being the parent of such a child (Fox et al., 2002). Nonetheless, they should strive to understand how a child with special needs affects (and is affected by) the family system.

In addition to providing love and affection, parents of children with disabilities must fulfill at least nine other varied and demanding roles.

Caregiver.  Taking care of any young child is a demanding task. But the additional caregiving requirements of children with disabilities can be tremendous and cause added stress (Smith, Oliver, & Innocenti, 2001). And the level of care needed by some children with severe disabilities or chronic health conditions can be nonstop:

Mike sleeps when he wants to, mostly during the day. He sleeps with a heart monitor on which alarms several times per night, because he stops breathing frequently. Usually I’m up by 8:00 and often cannot go to bed until 12:00 or 1:00 because of Mike’s feedings, medication. It’s hard to fit all of this into a day and still have time for sleep.

Douglas’ tube caught on the door handle and his trach came out. I panicked, but Douglas’ father was home and he “simply” reinserted the trach and reattached the tube to the ventilator machine. Douglas meanwhile had turned gray, then blue for just a minute or less. I was crying as he began breathing again and his color came back. (Bradley et al., 1992)

Although many parents receive help from extended family members and friends in caring for a child with disabilities, the amount and level of help is often insufficient. Respite care can reduce the mental and physical stress on parents and families created by the day-to-day responsibilities of caring for a child with disabilities.

Provider.  Food, clothing, shelter, activities (e.g., music lessons, sports, hobbies): parents pay a lot of money to raise a typically developing child from birth to adulthood. Providing for a child with disabilities, however, usually means additional expenses, sometimes in the tens of thousands of dollars. For example, consider the economic impact on this family of a child with physical disabilities and chronic health problems:

We had to find another place to live with first floor bedroom, widened doorways, enlarged front porch, central air, ramp, van. House renovation: $10,000. Van: $18,500. Air: $1,450. Porch: $1,400. Ramp: $1,000. Furnishings to accommodate supplies: $800. We’ve got the following equipment: Suction machine, portable suction machine, generator for emergency power, hospital bed, air pressure mattress, wheelchair, room monitor, humidifier, bath chair, oxygen, air cleaner, gastronomy tube pump, breathing treatment machine. And all the following expenses have gone up: formula, diapers, appliances, utility bills, medications. (Bradley et al., 1992)

It is not just families of children with physical disabilities or health conditions who face financial burdens. Many parents of children with learning and behavioral problems pay thousands of dollars for specific treatments, behavioral intervention programs, and in-home therapy. While some families receive federal, state, and/or private assistance for such extra expenses, most families have to pay their own way. On top of the additional expenses, families of children with disabilities often have reduced income because one parent works part time instead of full time or must withdraw from the workforce altogether to care for the child (Barnett & Boyce, 1994).

Teacher.  Most children learn many skills without anyone teaching them. Children with disabilities, however, often do not acquire new skills as naturally or independently as their typically developing peers do. In addition to learning systematic teaching techniques, some parents must learn to use and/or teach their children to use special equipment and assistive devices such as hearing aids, braces, wheelchairs, and adapted eating utensils (Parette & Brotherson, 1996).

Counselor.  All parents are counselors in the sense that they deal with their children’s changing emotions, feelings, and attitudes. But in addition to all of the normal joys and pains of raising a child, parents of a child with disabilities must deal with their child’s feelings that result from his particular disability: “Will I still be deaf when I grow up?” “I’m not playing outside anymore; they always tease me.” “Why can’t I go swimming like the other kids?” Parents play an important role in how the child with disabilities comes to feel about himself. Their interactions can help develop an active, outgoing child who confidently tries new experiences or a withdrawn child with negative attitudes toward himself and others.

Behavior Support Specialist.  All children act out occasionally, and all parents are challenged and frustrated from time to time by their children’s noncompliance and misbehavior. But the frequency and severity of challenging behaviors exhibited by some children with disabilities can make it nearly impossible for some families to experience and enjoy normal routines of daily life (Fox et al., 2002). Turnbull and Ruef (1996) interviewed 14 families with children with mental retardation who frequently exhibited problem behavior. The parents reported that their children frequently engaged in at least one of four categories of problem behavior: aggression toward others, property destruction, self-injurious behavior, or pica (eating inedible objects). The children’s problem behavior fell into one of two domains, according to the behavior’s impact on the child and the family: dangerous behavior (e.g., “He punches his face a lot on the jaw line—his cheek bone, his mouth, occasionally his forehead. . . . He will eventually bleed from his mouth”) and difficult behavior (e.g., “When I am around him it is constant noise. He talks or squawks. By afternoon I am frazzled”). Such behavior demands specialized and consistent treatment, and some parents of exceptional children must become skilled in behavior-support techniques to achieve a semblance of normal family life (e.g., see Boulware, Schwartz, & McBride, 2001; Delaney & Kaiser, 2001; Luchshyn, Dunlap, & Albin, 2002; Vaughn, Clarke, & Dunlap, 1997). 

Parent of Siblings without Disabilities.  As with studies investigating parental reactions to a child with disabilities, the results of research on the effects of such children on their siblings have varied. Some studies have found negative effects, such as a higher incidence of emotional or behavioral problems (Orsillo, McCaffrey, & Fisher, 1993) or lower self-esteem (McHale & Gamble, 1989) in siblings of children with disabilities. But other studies have found that siblings had fewer behavioral problems (Carr, 1988) or were more likely to display prosocial behavior (Stoneman, Brody, Davis, & Crapps, 1989), nurturing, and affection toward their brother or sister with disabilities (Stoneman, 1998) than were siblings of children without disabilities. The positive relationships between a sibling and his or her brother or sister with disabilities often last well into adulthood (Orsmond & Seltzer, 2000).

It is clear, however, that children are deeply affected by having a brother or a sister with special needs (Caro & Derevensky, 1997; McHugh, 2003). Brothers and sisters of a child with disabilities often have concerns about their sibling’s disability: uncertainty regarding the cause of the disability and its effect on them, uneasiness about the reactions of friends, a feeling of being left out or being required to do too much for the child with disabilities (Dyson, Edgar, & Crnic, 1989). Parents play key roles in determining the nature of the relationship between their children and the extent to which their children without disabilities develop into happy, well-adjusted adolescents and adults.

Marriage Partner.  Having a child with disabilities can put stress on a marriage. Specific stressors can be as diverse as arguing over who is to blame for the child’s disability; disagreeing about expectations for the child’s behavior; and spending so much time, money, and energy on the child with disabilities that little is left for each other (Cohen, Agosta, Cohen, & Warren, 1989). It is a mistake, however, to assume that the presence of a child with disabilities has a negative effect on marital relations. Some studies have found that a child with disabilities strengthens a marriage in part because of a couple’s shared commitment to the child (Sandler & Mistretta, 1998; Scorgie & Sobsey, 2000).

Information Specialist/Trainer for Significant Others.  Grandparents, aunts and uncles, neighbors, the school bus driver: all of these people can be important influences on a child’s development. While parents of a child without disabilities can reasonably expect her to receive certain kinds of treatment from significant others, parents of children with disabilities know they cannot necessarily depend on appropriate actions and reactions from others. These parents must try to ensure that other people interact with their child in ways that support their child’s dignity, acceptance, opportunities for learning, and maintenance of adaptive behaviors. One mother describes her response to anyone who stares at her son with Down syndrome: she looks the person squarely in the eye and says, “You seem interested in my son. Would you like to meet him?” (Schulz, 1985, p. 6). This usually ends the staring and often creates an opportunity to provide information or begin a friendship.

Advocate.  IDEA not only defines the rights of parents of children with disabilities but also requires specific efforts and responsibilities. Although some involvement in the educational process is expected and desirable for all parents, participation is a must for parents of exceptional children. They must acquire special knowledge (e.g., different kinds of related services), learn special skills (e.g., how to participate effectively in IFSP/IEP meetings), and be consistent and firm in presenting their wishes regarding learning goals and placement options for their child (Hanson et al., 2001). In addition, many parents of children with disabilities have concerns over and above those of most parents; they must often advocate for effective educational services and opportunities for their children in a society that devalues persons with disabilities (Kozloff & Rice, 2000; Yell & Drasgow, 2000). For example, while all parents may be concerned about having adequate community playgrounds, the parents of a child who uses a wheelchair may find themselves having to fight long and hard for an accessible playground.