Ashley is now a six year old kindergartner. She wears her curly
black hair in a thick braid pulled to the side with a bright ribbon. Her
face is round and pretty with dark eyes and long lashes that accentuate
her soft brown skin. We first knew her as a two year old who had just
suffered a C-1 spinal cord injury in a car accident in which she was a
passenger without a seat belt. After months in a pediatric intensive care
unit in which she was termed a "miracle child" for surviving such a significant
injury, she returned home with full paralysis beginning at the site of
her injury, a permanent tracheostomy, a respirator for assisted breathing
and a button gastrostomy.
Ashley initially received services in her from the preschool related
service therapists and an early childhood special education teacher
worked directly with Ashley, her mother and nurse. During her third
year, Ashley's mother expressed a strong interest in having her attend
preschool with other children. She was placed in Chapter One preschool
in an elementary building during the next two school years. She began
by spending less than a full daily session and only attended a couple
of days a week. Within the first year her attendance was increased to
the full daily session for five days per week.
Ashley brought challenges associated with medically complex conditions
and very significant physical disabilities. Fears about caring for Ashley
were common across special education and general early childhood staff
and were particularly related to her breathing and the suctioning procedures
required for her case. What was not a challenge was finding understanding
peers who welcomed her into the classroom and, with some adult guidance,
made the accommodations in their play needed to include her in activities.
Several medical personnel believed that Ashley should remain at home
in her bedroom with 24 hour nursing care - a recommendation of some
medical personnel. Her mother's decision to involve her in an inclusive
early childhood program was based on a commitment for Ashley to be an
active participant in life. Ashley's participation taught the staff
involved (teachers, therapists, paraprofessionals and nurses) much about
role release and letting go, as well as establishing consistent, reliable
medical and emergency procedures within the context of a preschool classroom.
Her teachers became used to pointing out that if Ashley was too fragile
to be in an inclusive preschool classroom she was too fragile to be
in a special education classroom. Most importantly, participation reminded
us of her and the dignity with risk and participation of Ashley's right
to be a child.