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Our Children: Jessica

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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.

 
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