We first met Jessica when she was two years old and was referred
to the infant and toddler early intervention program. We knew right away
that if an inclusive program would be available for Jessica when she turned
three (in just ten months), we would need to begin the transition process
immediately. A transition outcome was written into her Individualized
Family Service Plan (IFSP) to help the team prepare to meet Jessica's
special needs and to overcome barriers to an inclusive education for her.
Jessica lived in a small trailer on the edge of a very small rural
community with her grandmother. Transportation was always a problem.
Her grandmother didn't drive due to her poor health and transportation
resources were not available in the local community. A church member
helped when possible. Jessica's family physician was reported to comment
at each checkup that Jessica was living proof that he could be wrong.
He had never believed she would survive more than a few weeks, and yet
here she was gaining new skills slowly but steadily. While the physician
was supportive, he consistently urged the grandmother not to plan ahead
or get her hopes up.
Jessica had multiple disabilities including deaf-blindness, mental
retardation, cerebral palsy, and serious health impairments. She was
tube fed, needed regular suctioning, and frequently aspirated. There
were few choices for programs for any child in the community. The nearby
town did not have a preschool or even a child care program. The local
school district participated in a special education cooperative program
who at that time housed all ECSE programs 35 miles away in a larger
city, Jessica's grandmother did not feel comfortable with any program
that would not be close by in case of an emergency. Head Start offered
home-based programs in the area was hoping to establish a site for a
center in the community. The Head Start personnel were unsure of their
ability to meet Jessica's needs even if a site was opened.
The early intervention team continued to serve Jessica and began a
carefully planned transition to a home-based Head Start program with
special education and related services provided within the home as Jessica
turned three. All team members (both infant toddler and preschool) were
frequently found at Saturday night Bingo in the local community hall
to raise money for equipment Jessica needed and to help her grandmother
cover expenses. It was during these kinds of events that Jessica's team
were beginning to know each other as people and not just teachers, physical
therapists, and nurses.
At three and a half years, Jessica began to attend a Head Start center
one afternoon a week. Her time at the center was slowly increased, but
she missed frequently due to illness. She was alert to the children
around her and they always looked forward to her arrival. The staff
grew more comfortable with her special health care needs and were able
to use her equipment in ways that helped her to be a part of the group
and not just sitting on the outside. Her school district continued to
use an IFSP, because it provided more support for her grandmother's
involvement. Therapist's visited both at home and at Head Start to assure
everyone was participating in Jessica's program.
Jessica's challenges were many-the severity of her disabilities, the
family's limited resources, her poor prognosis, the limited access to
community resources and the remoteness of where she lived. Yet, Jessica
proved more than her physician wrong by living, she showed many of the
educators in the area that inclusion could (and should) be available
anywhere for anyone if it is the best program for the child. It wasn't
easy and it didn't occur immediately, but it did happen. Everyone on
her team overcame both personal and agency barriers by working with
Jessica, and Jessica went to school like everyone else.