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Home › Dad of the Month

Richard Robison

By Kelly Burgess

Each month, iParenting.com spotlights a father who inspires and moves us, who embodies the qualities that we all admire in a person, a man and a father. Above all, the Dad of the Month is dedicated to his children. Rich or poor, famous or not, he shines as an example of what fathering is all about.

Richard Robison helps people find gold. Not the shiny, expensive metal, but a precious resource that's far more valuable: information. As executive director of the Federation for Children with Special Needs in Boston, Mass., Robison is one of many who, over the past two decades, has helped lead a societal shift in our attitudes toward children with special needs.

Robison's dedication to becoming an advocate for children with special needs began the day his second daughter, Amy, was born. When she was diagnosed with Down syndrome shortly after her birth, Robison realized he had nothing but negative knowledge to sustain him through those first difficult days and weeks. Eventually, he decided he needed to help make sure other parents had a more positive experience.

Into the Unknown

In 1982, Robison, his wife, Dotty, and their 2-year-old daughter, Christina, were looking forward to the birth of their second child. At first everything seemed fine, but within a few hours the doctors began talking about testing the newborn for Down syndrome. Richard and Dotty were devastated. "It was like we were at the highest peak and then hit the lowest valley," Robison says. "We were lucky, because our pediatrician happened to be there, and she stayed with us all day, helping to soften the blow and making sure we knew what to expect. Without her it would have been a lot more difficult."

It quickly became more difficult as the couple ran up against the kind of ignorance toward Down syndrome that was still common in the early 1980s. Richard admits that even his training didn't give him much hope for the future of their baby. "My framework for Down syndrome was based on what I had been taught in college, which was that a child with mongolism, which is what they called it then, needed to be put into an institution," Robison says. "I was a psychology major and this was the information my textbooks had given me, and it was the totality of my exposure. It was like, if this ever happens, your life is over."

Even as a working, ordained minister, Robison's experience with Down syndrome was all negative. He often visited nursing homes and other institutions where people with Down syndrome lived without emotional or intellectual stimulation and were often drugged to keep them amenable.

Robison began to research Down syndrome to try and find an alternate vision for his daughter's life. He wanted to know not what she couldn't do, but what she could do. It helped him a great deal when their pediatrician introduced him to a family who also had a daughter with Down syndrome and who were raising her at home. The life-changing moment in the course of his research came when he found an article in Psychology Today about the condition. Accompanying the article was a beautiful photograph of a little girl with Down syndrome.

"Having that image of someone who just looked like a regular little girl made me determined that, no matter what, we were going to raise Amy to be a regular part of our community," he says. "There was a need then, and there is a need now, to provide opportunities for other parents to do the same."

Becoming an Advocate

Gradually, Robison began speaking about Down syndrome and became more and more involved in the cause of helping parents of children with special needs. He was receiving more and more invitations to sit on committees and boards as a volunteer and in advisory and advocacy roles for various state and local organizations. It became clear to him that he was interested in working within these systems to help draw a different, more positive future for the new generation of kids with disabilities – kids like his Amy. He decided to make the shift from minister to advocate.

His first job was in the commissioner's office for the state office of mental retardation. For six years he worked with Massachusetts families helping them find information they needed to fit a special needs child into their lives. In that job, he interacted quite a bit with the Federation for Children with Special Needs. The organization invited him to apply when they were searching for an executive director nearly seven years ago, and he was hired. He has found a deep satisfaction in his work.

"When the doctors told me what my child had, I was having a real hard time connecting that to anything," Robison says. "The few positives that we did encounter – an understanding pediatrician and meeting another family with a girl with Down's – gave us a sense of hopefulness. The broader perspective is that many of our kids are growing up as valuable members of society, and people are beginning to respect them and support their needs and accept them. If I had told people when my daughter was born that I couldn't wait for the day that she went to community college or appeared in a play, they would have thought I was crazy. I remember a social worker telling me that I really had to learn to accept the word 'retarded.' In other words, she was telling me not to have expectations for my child. Society has come a long way since then, and we're a big part of that."

In fact, it may have been partly through his work to find acceptance for children with special needs that his third child came to the family. The Robisons had decided that, because of complications Dotty had experienced with her second pregnancy, if they had another child it would be through adoption. Then, one day, they were reading the Boston Globe and saw a feature on a young boy named Jason in "Sunday's Child," a weekly column spotlighting a child who needed a home. Jason, who has Down syndrome and is autistic, is now 19 and is finishing high school.

It takes empowered parents to successfully bring up a child with special needs in the home, but it's difficult to be empowered if information is not readily available, along with caring people to provide real assistance. That's what Robison decided to devote his life to more than 20 years ago, and he has created a ripple effect among other parents who also want more for their children regardless of their abilities.