By Barbara Livingston Nackman In The Journal News
Mahopac, NY – Maureen Benson of Mahopac first became a parent
advocate for her own child, who has autism and cerebral palsy. Quickly, she became a resource for other parents, a path that led her to be named Parent
Advocate of the Year by the state’s Mental Health Association.
The award recognizes one parent in New York whom the agency feels
demonstrates dedication and leadership aiding others in finding and
getting mental health services for children with serious emotional disabilities
and their families.
Benson, 43, recalls that her life changed when Kathryn, 9, was born.
It was immediately clear that her daughter had cerebral palsy, which
affects her mobility and speech, Benson said. Her daughter’s condition was
later diagnosed as autism, a developmental disability causing difficulty
in verbal and nonverbal communication and social interaction.
“You spend your whole life on the phone,” she said. “You have to
watch your child much more carefully, and you have to seek out services that
most of us have never heard of.” She sought help from home- care agencies and
advice on dealing with health services and on finding professionals and
other parents of children with similar afflictions.
By 1996, Benson had become certified as a special-education teacher,
with a master’s degree from Long Island University in Dobbs Ferry, and was
a paid parent advocate for Putnam Family Support and Advocacy Inc., a
nonprofit group in Carmel. Previously, she worked in the purchasing
department at Kraft General Foods in White Plains, leaving the corporation
in the early 1990s.
“She has faced hardships in her own life and has dedicated her time
and energy to others,” said Patricia Musantry, executive director of
Putnam Family Support.
The need for services to help families navigate the complex web of
social services is rapidly increasing. In 1996, the 2-year-old Putnam
group advised 96 families. By last year, the staff had registered more than 500
families, Musantry said.
Evening support groups, recreational activities and an annual resource fair are innovations that Benson brought to the advocacy group.
The professional and personal aspects of Benson’s life made her a
perfect choice for the Parent Advocate award for 2001, said Joseph Glazer,
president and chief executive officer of the statewide association, which
has 33 regional affiliates.
“Her own circumstances and the way she exemplifies both parenting
and advocacy jumped out at us,” he said.
Local parent Barbara Paynter of Carmel is a recipient of Benson’s services.
“She is resourceful and has good ideas,” said Paynter, the mother of
an autistic son, who participates in a support group at the Putnam center.
“She is the glue that keeps us together.” Benson is proud of her award,
but she hopes the recognition helps shed light on autism, a condition she said
many people don’t understand.
Autism is the result of a neurological disorder and occurs in 1 in 500 individuals, according to figures from the national Centers for Disease Control and Prevention.
It is four times more prevalent in boys than in girls.
Children and adults with autism typically have difficulty communicating, making it hard for them to relate to others. In some cases, aggressive and self-injurious behavior are present.
The windows and doors of Benson’s home in her Lake Secor
Neighborhood are locked in a few different ways. Kathryn has been known to leave the house and could easily get hurt without supervision, her mother said.
Even the refrigerator is locked, Benson said, so that Kathryn won’t
gorge and get sick.
As a single mother, Benson said, she relies on family members to help with baby-sitting and for emotional support. Kathryn’s sister, Kimberly, 8, a third-grader at Austin Road Elementary School, said it is sometimes hard having a sister who is
different.
“Other kids don’t always understand,” she said, explaining that her sister jumps around the room, doesn’t let others play and can’t really speak more than one word at a time.
“I am hoping Kathryn can go into my school soon,” she said.
Kimberly alternates between snuggling with her mother and following after Kathryn as her mother talks to a reporter.
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