Dorothy Stone
More than 50 years ago, an event
occurred that changed my life and that of
my husband, Bill. It also affected our
family and friends. The special influence
it exerted on our daughter, Linda, is
described in an article she wrote at age 19
for the Bronx Forum, the newsletter of
Bronx Developmental Services, directed
by Herb Cohen. (Please click on “Linda’s
Perspective.”)
Our son Howie was born two months
prematurely and, though not fully
diagnosed until age one, it was determined that he had cerebral palsy, spastic
quadriplegia and profound mental retardation.
The advice given to us was to “institutionalize him immediately, he would be a
vegetable and he would ruin our lives as well as those of our family if we kept him
home.” While those words were depressing and discouraging, we were determined to
keep Howie home.
Those first years were very difficult. Howie cried all night; he did not respond in the
usual way too normal stimuli and he was often inconsolable. Our pediatrician and our
family were our only means of support. We learned later on that there were better
ways to handle our situation. (Please see “Lessons Learned.”)
Meeting other parents with similar needs became the source of valuable information,
understanding and support. (Please click on “Parents Connect.”)
There were no services for children like Howie, who was “too mentally retarded” for
programs for the physically handicapped and “too physically involved” for those with
intellectual disabilities. We banded with other families to advocate for and create new
services at every point of transition: early childhood, day camp and recreation,
overnight respite, school-aged educational services, sleep away camps, and residential
and specialized day habilitation programs.
Although Howie was the inspiration for these services, our efforts also helped countless
other individuals with multiple handicaps. Many of these services are currently at risk,
targeted for budget cuts. As our generation of parent advocates ages and dies off, it is
the parents of younger family members who must become staunch advocates with a
global viewpoint to assure that the programs for which we fought so hard are
maintained, and to create innovative services to meet the needs of future generations
with developmental disabilities and multiple handicaps.