For any parent, finding out your child has disabilities changes your world forever. For a pioneering group of five women in the Bronx, Mary Bonsignore, Mary St. Mark, Dorothy Stone, Nellie Velez and Anna Mae Vener, the children who changed their worlds led them to the herculean undertaking of altering the world around them, so they could make a place for their children and others like them to live, learn, love and laugh – instead of being locked away in an institution.
Dr. Herbert J. Cohen, director emeritus of CERC Mary St. Mark's son, Michael, was born in the early 1960s. She began to suspect something was wrong when he wasn't talking like other kids. "He wasn't saying papa, dada, or anything. I actually thought he was deaf," she recalled. "I kept asking the pediatrician ‘What is wrong with him?'"
Eventually she made her way to the Developmental Evaluation Clinic that had recently opened on the second floor of Jacobi Hospital (and would ultimately become Einstein's Children's Evaluation and Rehabilitation Center, or CERC). She learned that her son was both mildly intellectually limited and autistic.
With those diagnoses, her options were institutionalization for Michael and a load of blame for herself. "It was the belief that we, as parents, had a problem, and if we got psychological help, our kids would be well," she said.
"The thinking then was that autism resulted from poor mothering," explained Dr. Robert Marion, CERC's current director.
Refusing to accept that there was nothing that could be done, Ms. St. Mark was determined to find out what was wrong with Michael. "And, once I found out, I wanted to know how I could help him have a better life and give him the best. "
That best meant saying "no" to putting Michael in an institution and setting out to get programs and services that didn't yet exist to provide him what he needed. It meant doing anything and everything, regardless of the consequences.
"I remember being handcuffed in a paddy wagon, protesting for programs for our children because there was no program for them."
Fortunately, history and a unique confluence of events were coming together at Einstein at that time. They motivated change while transforming a handful of Bronx parents and some dedicated professionals into loud and effective advocates regarding the care of people with disabilities in New York State.
The stirrings of this change began when Dr. Lawrence Taft was recruited to join Einstein's department of pediatrics in 1956, where he launched a pediatric rehabilitation clinic and a developmental evaluation clinic. Eight years later, Dr. Herbert J. Cohen joined the clinic's pioneering staff as a fellow in pediatrics, and in 1965, the clinic activities were formally merged into a single entity – Einstein's Children's Evaluation and Rehabilitation Clinic.
Meanwhile, in our nation's capital, John F. Kennedy – whose sister Rosemary was intellectually limited – became President of the United States. With strong support from another sister, Eunice Kennedy Shriver, he vowed to bring people with intellectual limitations out of the shadows and into the public light.
His family established the Joseph P. Kennedy Jr. Foundation to seek the prevention of intellectual disabilities by identifying its causes and to improve the means by which society deals with citizens that have intellectual disabilities. These initiatives pushed for improvements in the care of children with such limitations, with a shift away from institutionalization toward more nurturing home care. They also led directly to the construction of the Rose F. Kennedy Center at Einstein, which became CERC's home in 1970.
By then, Dr. Cohen had become assistant director of CERC; he also was tapped to head up the creation of Bronx Developmental Services (BDS), whose aim was to provide a network of services in order to return formerly institutionalized children and adults to the Bronx community. It proved to be both a pivotal and contentious role.
"Our mission was counter to the direction the state was going," said Dr. Cohen. "They were only responsible for people living in institutions, and we were advocating for more services for everyone who needed them within the community."
While the role sometimes got him in trouble, Dr. Cohen had some powerful allies – the moms of the Bronx. "These women made people listen to them," he said.
Dorothy Stone recalled her son Howie's birth in 1960. "Howie weighed three pounds and 13 ounces and was in the hospital's premature nursery for five weeks. He had jaundice and various other conditions, but when we took him home they said, ‘He'll be fine. He's just two months premature so it'll take him two years to catch up with everybody else.'"
Mary Bonsignore (far left) and Mary St. Mark (far right) during a meeting with current CERC director, Dr. Robert Marion, and Joanne Siegel But Ms. Stone knew something wasn't right. "We went home with no kind of special instructions. He cried all the time, he wouldn't follow any movement, he wouldn't play with toys, he couldn't be amused," she said. "And he was my second child, so I knew what my daughter was like, and I knew that he was different. I kept asking the pediatrician, who said, ‘He'll be fine, just give him fresh air and feed him well.'"
She continued, "When he was five months old, I said, ‘I can't diaper him, I can't get his legs to move.'" That's when he was diagnosed with cerebral palsy. At one year old, he was diagnosed as "mentally retarded as well as physically disabled."
Still, she and her husband were determined to keep him home. Knowing she needed to find help for Howie, she hunted for programs that could give him the support he needed. When he was almost three, she achieved her first victory, getting him into a program for children with Down syndrome.
"I knew the law, and I knew they had to take him. They had no classes, limited speech therapy and no transportation for him, but it was something," she recalled. "Every time Howie needed another program, I would advocate for the next step in his education."
"You really had to work hard to get what were critical services in order to keep your kids at home at a time when everybody was saying ‘he'd be better off in an institution' and you knew he wouldn't be," noted Dr. Marion.
When Ms. Stone found Dr. Cohen and his group at BDS, she got involved in every committee, assisting with all aspects of planning for a Bronx Public School for Multiple-Handicapped Children who were unserved and underserved. "Howie and others thrived there for many years and despite many crises, the parents weren't giving up until everyone got what they needed," said Ms. Stone.
It was through the BDS connection and the Bronx Mental Retardation and Developmental Disabilities Council that these Bronx mothers emerged as advocates. Individually and together they created a new reality for people with disabilities and their families in their corner of the Bronx.
Over the years these desperate and heroic mothers fought for better facilities for their kids – taking on the Board of Education and state commissioners, working with the Bronx borough president's office, holding meetings, joining protests – making their voices heard.
One of the most pitched and public battles came in 1994, during Rudy Giuliani's first year as mayor, when the city proposed slashing $20 million dollars in funding for services to those with developmental disabilities.
Following a successful rally to protest the cuts at New York City Hall, organized with the help of the Bronx Moms, "We attended a town hall meeting held by Mayor Giuliani and I got up and told him, ‘If you cut the budget, it will cut the matching funds. We lose a lot more than just the $20 million,'" said Ms. Vener, who began bringing her son Lloyd to the dental clinic at CERC in 1969, when he was age 3. "And Giuliani said, ‘That's not true. It won't affect other funding.'"
When Ms. Vener insisted, he finally said, "Okay, if I'm wrong and you're right, we won't cut the funding." Ms. Vener was right and the mayor had to honor his public promise.
"Giuliani referred to us as ‘those damn mothers in the Bronx'," said Ms. St. Mark.
It was a reputation they were proud to live up to. For Mary Bonsignore, having a son with multiple disabilities, whose special needs were largely unmet, it offered a focal point. Her son Michael's disabilities stemmed from a bout with Rubella (German measles) when she was pregnant with him in 1964.
"Once I accepted the fact that special needs parenting was going to be my reality, I began a kind of mothering I had not expected, and for which I was not trained," said Ms. Bonsignore. "I realized that if I was going to help my son, I was going to have to get tough – tough enough to challenge those who wanted to limit or ignore my son's needs."
Mary Bonsignore and Dorothy Stone went on to co-found a parent group U.T.O.P.I.A., United Together Organized Parents in Action, and the Newborn and Family Support Network at North Central Bronx Hospital to provide peer support to parents who recently gave birth to infants with developmental delays.
Their efforts also bridged generations. Even though Ms. Velez' son, Jason, was born in 1975, she still was counseled to institutionalize Jason and was told he would not live past age 2. "I knew I had to fight for my son," she said.
When the law was passed that all children had to be educated in the public school system, Ms. Velez got the handbook that outlined the services that had to be provided to students. "I used that book as my bible," she said. "Every time Jason didn't get a service, I used that book as a weapon." She showed other parents how to do that as well.
Joanne Siegel with Dorothy Stone Though Jason died in 1999, at age 24, Ms. Velez has continued to advocate, for multiple programs for people with disabilities. She helped develop a Bronx early intervention program through Volunteers of America, and worked on an initiative to provide work to 500 Bronx youths with disabilities through a grant from the social security administration in conjunction with the CUNY Youth Transition Project.
Through all she does, Ms. Velez passes along the lessons she has learned. "I tell my parents, not to wait for an emergency to go to their politicians. Stop by to keep them in the loop, because advocacy isn't a matter of asking for something that you need today, it's ongoing."
It's a lesson the Bronx moms hope everyone will learn. "Today's parents need to know how far we've come to get where we are now, because without the struggle and without parents – especially mothers fighting for programs in the Bronx and New York City – there wouldn't have been programs," said Ms. St. Mark. "We've spent the last 40 years fighting not just for our children, but for all children, and for those children's families."
"We fought for programs we knew our children would never get to take of advantage of," added Ms. Vener. "Although my first care is Lloyd, I've never fought only for him. We fought to get things for the people coming up. If you look at a timeline from when Lloyd was born in 1966, to now, you go from parents who were thrown into utter desperation to having programs that start when kids are born."
Dr. Herbert Cohen, now director emeritus of CERC, agreed. "People today don't understand the struggles and history we've been through. We need to continue educating consumers about the danger of losing what we've worked so hard to achieve."
"That is the reality," said Ms. Bonsignore. "Parents today need to realize they are one step away from losing everything."
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If you are a parent of a developmentally disabled child, below are links to information and resources.
Einstein's Children's Evaluation and Rehabilitation Center (CERC)
Autism Society of America Bronx Chapter
e-mail address: Monica.Sanabria@nbhn.net
Bronx Developmental Disabilities Council
Kevin Meade, President
e-mail address: email@example.com
Mary Bonsignore, Parent Advocate
e-mail address: firstname.lastname@example.org
Directory of Health Services for Bronx Residents with Developmental Disabilities:
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Posted on: Wednesday, December 28, 2011