Our son, Gregory, was born with a rare condition called Zellweger Syndrome. At the time he was diagnosed, the specialists informed us that because of his deafness, blindness, and cognitive delays, he probably would never learn or live in the community. They advised me to just bring him home and love him, but not to expect much. We took their advice, and Gregory has been abundantly loved!
We also ignored their advice, and Gregory was always presumed competent with the capacity to learn and grow. In school he was offered numerous special programs for students who were deaf-blind. He amazed us with his abilities.
During his high school transition years, he was exposed to numerous community-based vocational opportunities and was enrolled in the School to Work program during his last year of school. School to Work is a partnership between school, the county, DDA, DVR, and the employment vendor to assist students in being gainfully employed with supports in place before they leave school. We engaged in Person Centered Planning and developed a plan to help provide meaningful opportunities for Gregory.
I was well prepared for the day when the bus didn’t show up come fall—in addition to work and volunteering, we set up a Medicaid Personal Care provider to be with him during the day and to keep him active—but it still wasn’t enough. We soon realized that, despite various community activities, volunteering, and work, we didn’t set up social activities to build relationships with peers.
Regardless of engaging in community activities, his life was isolating and lonely. His sister went off to college and would come home with tales of her great big new life, with new people and new opportunities, and we realized that Gregory needed a great big life that included other people his age and more than one caregiver at home with him.
I wished we would have worked on that more while he was in school so that he left with a circle of friends. We overlooked that, and it was much more difficult to create without the support of an already established/manufactured group of classmates.
The good news for Gregory is that he recently moved in to a supported living situation with peers and caregivers supporting vocational and recreational activities that keep him busy and connected to others. Now when he comes home or we visit, we learn about his great big new life that includes new experiences, new opportunities, and new friends.
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