Federation for Children helps parents negotiate the ‘maze’

Ashley couldn’t have picked a better dad than Ed DeNoble.

Born with Down syndrome on July 4, 1999, Ashley has benefited from her dad’s motivation to learn and his tireless advocacy to help her become the very best person she can. And, DeNoble admits, his family has the means to provide her with all the advantages she’ll need to meet her goals.

But DeNoble, a portfolio manager at Harvard Management Company, quickly realized that negotiating what he calls “the maze” of services for his daughter – from learning her legal rights to a high-quality education to managing her health care – was a challenge.

Luckily, he found his way to the Federation for Children with Special Needs, a Boston-based nonprofit that provides information, support, and assistance to parents of children with disabilities. Now, as a board member of the organization, he champions its cause at Harvard and beyond.

“It’s hard enough to raise children, let alone have one with special needs,” he says. “You have a million questions when this happens. Maybe we can help you get the answers.”

For Ashley, the Federation has connected her with enriching activities like horseback riding. For her and her family, it’s been invaluable as they anticipate her entry into kindergarten next year. Indeed, advocating for the educational rights of students with disabilities is one of the Federation’s primary activities.

“Our kids should simply have the opportunities any other kid would have,” says Rich Robison, executive director of the Federation for Children with Special Needs, which responded to 26,000 phone calls last year. Robison visited the

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For more Community Gifts information, call (617) 495-1598. Learn more about the Federation for Children with Special Needs at
http://www.fcsn.org.

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Harvard Graduate School of Education Tuesday (Nov. 25) with his 21-year-old daughter, Amy, a student at Massachusetts Bay Community College who also has Down syndrome. Together, they spoke to lecturer Thomas Hehir’s “Students with Disabilities in School” class, vividly demonstrating Amy’s achievements.

“If I had told you, when Amy was born, that I couldn’t wait until she lectures at Harvard, they would have locked me up,” Robison says. He credits her accomplishments – she’s active in drama, has a rich social life of disabled and nondisabled friends, and hopes to one day live independently – in part to her full inclusion in mainstream classes at Lincoln-Sudbury High School.

But for the Robisons, such advantages were hard-won. Rich Robison described one of Amy’s English teachers as unwilling to let Amy “read” one class assignment – the compelling but challenging novel “Stones From the River” – as a book on tape. But her parents persisted, and the teacher commended Amy’s book report, for which she got an A, for drawing out some of the subtleties of the lead character, who also has a disability. Father and daughter made clear that having informed, vocal parents as her advocate helped Amy succeed.

The power of the Federation’s parent training is not lost on DeNoble. “There’s nothing we can do about [Ashley’s] extra chromosome, but to share information, to have information, was worth something,” he says.

As Harvard wraps up its 2003 Community Gifts Through Harvard Campaign, DeNoble hopes that others around the University will consider directing their giving toward the Federation for Children with Special Needs, whether or not their lives are directly affected by a child with a disability.

“The whole society is better off if my daughter is able to be somebody, to do something,” says DeNoble. “It can happen to anybody, and if it happens to you, it’s not the end of the world. It’s been a gift more than anything in our case.”