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As every parent knows, new babies
do not come with a “how to” manual.
When we enter the “disability
world” of parenting a child with special needs, an entire new manual is needed.
It is needs to be a “how to navigate multiple systems” manual. Doctors,
benefits, insurance, specialists, therapists, evaluations, and the list goes on.
As my son enters his late teens, I
am starting to turn the page of the manual to a new chapter. It creates as many
questions and as many fears as the first day he went to a preschool or to
elementary school. Will he work? Will he continue to live with us? Will his
education continue? Who will he live with?
If anyone had asked me a dozen or
so years ago if I could picture my son living on his own or owning his own home,
I would have said “no way”. I don’t feel that way anymore. There are resources
available to help with home ownership and there are home- based support services
that could help with his independent lifestyle if he so chooses.
Our children with disabilities are
growing up with an independence that was not available or supported or even
thought of a generation ago. A generation ago parents were fighting for a
public school education for their child with disabilities. Parents were
fighting for an alternative to an institutional placement. Two decades ago
Early Intervention was not an available service for babies.
It is important for all of us to
remember that what we have today for our children was not always there. It is
easy to be complacent. Complacency can be very dangerous. What we have today
is because of the dedication and love and hard work of parents from the
generations before us. We need to hear their stories, remember their stories
and be forever grateful for their hard work.
Janice Fitzgerald
Executive Director
Parent to Parent of NYS
January 27, 2004
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