Parent Perspective: Craig's Life
We knew that Craig was deaf by the time he was two months old. Nevertheless, we went to several medical centers to confirm his hearing loss. My husband and I suspected other problems; we continued to go from doctor to doctor, medical center to medical center searching for answers as to Craig's appropriate diagnoses.
Craig's early developmental milestones were within normal ranges, he sat up at 6 months, walked at one year, however, we noticed Craig staring at lights, arching his back, and generally ignoring people around him. He was not interested in signing and it took forever for him to start using signs to communicate. Several teachers suggested that he had "autistic tendencies", but no one could agree on a diagnosis except for his profound hearing loss....
Craig's educational journey began at eighteen months old in a self contained hearing impaired class. At age three, Craig moved to a noncategorical preschool class for language delayed children. He attended that program for two years and made some progress. During the summer our family visited Gallaudet College in Washington, D.C.. We participated in a "family learning vacation" with both Gary our older son, and Craig. We met families from all over the country; we were not alone. However, it became more apparent that Craig was different than the other children. No one seemed to know what to do for Craig; no one could agree on a diagnosis except for his profound hearing loss. Everyone agreed that he was "unique". Autistic tendencies were occasionally described. We were more confused than ever.....
Once again, at age five, Craig returned to a hearing impaired self contained class. This was a short venture, lasting only four months. The teachers were not prepared to work with this "strange little boy". Craig moved on to the Hampton School For the Deaf and Blind for three years.
The staff's good intentions and best efforts could not compensate for the lack of training needed to deal with the behavioral symptoms of autism and deafness.. Although there was a multihandicapped program at the school and there was an autism program in the community neither could adequately provide or would combine resources to meet his needs. At the time, the dilemma of prioritizing problems, his deafness and the fact the agencies worked independently might have predicted the stress and lack of progress Craig experienced... He regressed educationally, behaviorally, and socially.
Encouraged by yet another new teacher, we searched for a program to address his unique behaviors. However, the stress for our family as well as Craig pushed us to "our wit's end". We agreed that Craig needed a very structured twenty-four hr. program using sign language in an environment using behavior modification techniques. This required residential placement at the Grafton School in Winchester, Va., a residential program for autistic youngsters ,located four and one half hours from our home. For eleven years, Craig remained away at school except for home visits every six weeks.
We tried to visit as often as we could at the school where he lived in a group home with seven other adolescent young men. This allowed Craig to participate more in a community, but not his home community. Craig began his job training through Grafton's Vocational Technology program.
He worked in a laundry, grocery store, and at the social services office. His last job in the community was as a volunteer at the local hospital. He spent two hours a day unloading and distributing supplies and folding towels for the operating room in the hospital laundry. He seemed to enjoy his work and had a staff person who would act as his job coach, interpretor at the job site. Because of the continuous turnover in such work situations, it was a very slow and sometimes disconnected process. Each new staff had to be trained in both sign language and the appropriate way to respond to Craig's autistic behaviors. These work opportunities have helped Craig be much more "tuned in" to the world around him.
Craig returned to his home community twelve years ago. He spent several years working at different jobs and now at age thirty-two Craig is living in a supported living program with another young man which is supervised from 7:30 a.m. to 11:00 p.m. by the Department of Mental Retardation staff in Virginia Beach. Funding for the position of a job coach is finally being paid through the Dept. of Mental Retardation with an M.R. Waiver. Meanwhile Craig works 5 days a week in a center assembling equipment for a cable company and other packaging systems. He participates in bowling and downhill skiing during the winter which is sponsored by Special Olympics.
Like many families, we are sports oriented and Craig will continue to participate with his family swimming, biking, skiing, and attending sporting events in our community. As you can see, Craig is maintaining an active and productive life, and our hopes and dreams for Craig are finally coming true with the support and help from many of his "new" friends in the community.