Chapter 8 - The Children's Story
"The major thrust of this book has been on parents' experiences with raising a child with a physical disability. However, we realize that the parents' story is by no means the only one. Their children's insights and recommendations are just as important. To give us the complete picture of living with a disability, we also explored the children's experiences. We were curious to know how they felt about many of the same issues that we discussed with their parents: Did things get easier or harder for them as they matured? What aspects of their homes helped or hindered them? How did they feel about their social lives? What would an ideal home and neighborhood be like, and were their ideas and recommendations different from those of their parents? What advice would they give to other children with disabilities and to parents raising a child with a disability?
while we deliberately did not investigate parents' experiences with school
systems, we did ask the children about the situations in their schools.
This chapter excerpt summarizes the children's complex views of their
school-age and adolescent years."
School-Age Years and Adolescence
Again like their parents, the children reported greater difficulties as they
grew and started school. More children described their school-age years negatively
than positively. These were the years when it became obvious that their homes,
without modifications, were inaccessible and unacceptable. Problems with stairs
and second-floor bathrooms were mentioned. Most of the children who did not
already have wheelchairs started using them during this period. Half of the
children moved from apartments or two-story or split-level houses to one-level
homes during this stage. The houses of the other half underwent major modifications.
Parents built accessible bathrooms and/or installed such features as hydraulic
bath lifts and other lifts throughout the house, a spa bathtub, stair glides,
or an elevator.
One 11-year-old reported: "[Because of inaccessibility] I was never able to go over to other kids' houses to play--they always had to come to my house."
When asked about anything that increased their independence during this stage, children mentioned the same equipment and modifications that have already been discussed--mobility devices such as electric wheelchairs and three-wheeled vehicles; bigger rooms and accessible bathrooms; ramps and grab rails; accessible outdoor walkways; wide halls and doors; lowered light switches and lever door handles. Some children noted that getting a computer helped them significantly for both educational and recreational purposes.
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