In June of 2008, my daughter Megan, diagnosed with Angelman syndrome, will leave high school. I don't think she will be able to participate in a graduation ceremony, so I say "leave" high school.
She will then stay at home with a home health-care provider, if one is available, or I will have to quit teaching to take care of her, leaving a career that currently spans 18 years. Sadly, the only local adult day-care facility for Megan, Open Arms, closed this spring and the only other options locally require mental retardation waivers and involve a long waiting list.
I don't think many people are aware of the needs of the severe and profoundly disabled community, nor do most people care, but as Megan's mother, I feel obligated to give voice to her need, though it's been met with silence so far.
She passed the Virginia Alternative Standards of Learning test, receiving an "Advanced" mark under Social Studies, and "Proficient" in all other categories. However, as a high school teacher, I just don't see how this can be because she cannot read or write, nor does she have a sense of time or money, nor does she have any employable skills.
In fact, I believe that Megan is the poster child for the Child Who Has Been Left Behind. Communication is her major deficit, and when she leaves high school, she will have even fewer people with whom to communicate, not that her skills are functional at this point anyway.
Virginia has left her behind. Spotsylvania County has left her behind. And my husband and I sometimes wish that we could leave her behind. But she deserves a future like anyone else who leaves high school. Sometimes when I'm helping students with college essays, recommendations, and scholarship letters, I wonder who is working this hard to help my daughter make the transition from high school into the community. No one, as far as I can tell.
Is there anything we can do to create adult day-care opportunities within my Spotsylvania community to give Megan something to do when she graduates from high school? My husband and I are in our 40s and can still get Megan to bed at night and give her a bath in the morning, but we'd like to have a place to send her during the day where she can safely interact with other folks who have compassion and interest in enriching the lives of the disabled.
If anyone has any information that might make Megan's future brighter, we would love to see it in the pages of the newspaper. We are even willing to relocate to a community that could afford Megan a better life.
Lynn MillerSpotsylvania
Editor's note: Angelman syndrome is a chromosomal disorder characterized by a cluster of symptoms including stiff, jerky gait, absent speech, excessive laughter and sometimes seizures.