The Many Roles of the Exceptional Parent (page 2)
Parenthood is an awesome responsibility, and parenting any child requires tremendous physical and emotional energy. All parents share a great deal in common. Hart and Risley (1995), who conducted a longitudinal study of 42 families with young typically developing children, noted: “Raising children made all the families look alike. All the babies had to be fed, changed, and amused. As we went from one home to another we saw the same activities and lives centered on caregiving. . . . Most impressive of all that the parents had in common was the continual and incredible challenge a growing child presents”.
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).
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