By Harry Keaney
To be told all may not be well with a child is every parent’s nightmare.
"When you’re told there’s something wrong with your child, your head turns off and your heart bleeds," said Grace Hanlon, a learning and behavior disorder specialist based in Fair Haven, N.J.
Hanlon knows the feeling all too well. Six months after her son Jack was born, their pediatrician thought he might have had hydrocephalus. Fortunately, the pediatrician was wrong; instead Jack had a subdural hematoma, which required two brain surgeries, the second of which necessitated Hanlon to spend Christmas 1994 in NYU Medical Center with her recuperating son.
Having been in the midst of sick children during what should have been the festive season left a deep impression on Hanlon.
"I will never complain after having seeing those children," she said.
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Jack Hanlon is now a normal, hale and hearty 3-year-old growing up alongside his elder brother, Patrick, 7.
But whether it be a child with a physical disability, a neurological problem or a behavioral difficulty, Hanlon believes the key to parents’ coping lies in access to information.
"The best way for a parent to heal their heart is to turn on their head, become knowledgeable about the disability, about their rights and their kid’s rights," she said.
It’s advice that Hanlon, who’s 31, has been helping parents and educators put into practice for almost a decade, particularly through the three videos produced by her company, Edvantage Media, Inc.
The first video, entitled "3Rs for Special Education, Rights Resources and Results," deals with the special education system, laws on children’s rights, developing individualized education plans and preparing for school meetings.
The second video, "A New IDEA for Special Education, Understanding the System and the New Law," focuses on the Individuals with Disabilities in Education Act, hence the acronym IDEA in the title.
Hanlon’s latest release is entitled "Successfully Parenting Your Baby With Special Needs, Early Intervention from Ages Birth to Three."
Hanlon also has her own website, www.edvantagemedia.com. Her videos are listed in the PBS catalogue, and her video on the Individuals with Disabilities in Education Act is to be marketed as a companion piece to the textbook "Teaching Exceptional Children" published by Prentice Hall.
While an undergraduate in Rosemont College, an all-girls Catholic college in Philadelphia, Hanlon worked with severely emotionally disturbed children. "That’s when I realized my calling," she said.
Prior to graduating in 1989 with a degree in psychology and education, she worked as intern for "Sesame Street," incorporating children with special needs into the program.
Hanlon went on to obtain a master’s degree in psychology and education and, in 1992, in Morris County, N.J., she started the Developmental Learning Center, a special school for autistic children. The school, for which Hanlon wrote the curriculum, originally had four children; now it has more than 100.
"Shortly after that I realized how important it was for parents to understand the law that enabled their kids to be educated in these programs so that they can advocate for them," she said. Hence her video on the Individuals with Disabilities in Education Act.
"IDEA entitles all children to be educated in a free and appropriate education in a least restrictive environment," she said. "If parents understand IDEA, they will be much better advocates for their child. Parents have to get right in at the beginning to get an individualized education plan, or IEP. The parent is an equal participant in IEP, which is the cornerstone of a child’s special education program," Hanlon said, adding that she was amazed how many parents were not aware of their rights.
While teaching, Hanlon began to host workshops to help parents advocate for their children. After Patrick was born in 1992, she went into private practice but nevertheless found she was still being invited to parent meetings.
"That’s when I felt a video would help," she said.