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Our Children: Ashley

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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.

 
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