From a Family’s Perspective: The Sweeney’s Share their Story

Gerry Sweeney and wife, Dolores, have been tireless advocates for children and adults with developmental disabilities. Their passion to stay involved and share information with other parents and caretakers stems from a rare incidence that happened to Denise, their 46-year old daughter, in 1966.

Born a typical functioning child, Denise’s disability developed after suffering from Post Vaccinal Encephalitis—a direct result of the Small Pox vaccine. Odds of reacting to the vaccine are one in a million. Denise happened to be that one.

Though she is very high functioning, her life, and that of her parents, has never been the same.

In the 27 years Denise has spent with AHRC, “she’s always excelled at her jobs in the workshop and Annex,” said Dolores. “My daughter is excellent with numbers—she will remember things that I just simply cannot. Doctors have said that if she hadn’t suffered from the Post Vaccinal Encephalitis, she would’ve done something great with math. But I say, ‘don’t go there’—we love Denise just the way she is.”

The family first got involved with AHRC through the Sachem Special Education Program. Having lived in Queens, NY prior to Denise’s diagnosis, Gerry, a retired MetLife executive, moved the family to Holbrook--part of the Sachem School District.

Though Sachem’s Special Ed Program was highly respected, the world was a different place in 1971.

“I remember feeling very alone at that time,” said Dolores. “There were only four Special Ed classes from kindergarten to 12th grade available. ‘Mainstreaming’ was the buzz word in education, but there were a lot of ignorant people. The Special Ed teachers were amazing, but there was definitely a level of discrimination against them from other faculty.”

Dolores and Gerry are not exactly the “sit back and wait” types. Lack of programs and supports for children with special needs only propelled them further into the educational advocacy movement.

As the first Special Education Coordinator on Sachem’s PTA, Dolores felt her position was “not enough.” “We needed a stronger voice.” She then joined other parents to create one of the first Special Education PTA (SEPTA) on the Island. And though SEPTA’s establishment was an uphill battle, new legislation from Albany, called “Project Re-Entry,” helped beef up the school’s Special Ed program. “That one change made all of the difference—schools were getting double from the State for each child with special needs that they took in. Sachem’s Special Ed program just exploded,” said Dolores.

As graduation approached, the Sweeney’s once again found themselves researching services that would meet their daughter’s special needs. Having first looked at BOCES, AHRC’s person-centered planning seemed like a better fit.

“The interaction with friends and staff has been a very positive experience for her,” said Dolores. “I know that it takes a tremendous amount of patience and tolerance to do this job. Yet the Program Supervisors and other staff members have always treated Denise with a high level of kindness and respect.”

As parents, “you often worry about the way your child is being treated,” said Dolores, a member of AHRC’s Auxiliary. “But AHRC staff members have l

istened to me. They’ve taken care of things when I expressed concern—that makes me feel good as a mother.”

Though Denise has grown up, Gerry and Dolores are still heavily involved with advocating for people with developmental disabilities.

“Other parents look forward to their kids growing up and living their own lives, but our kids are different. We can’t just let them go. We have to be there for them, we have to be their voice,” said Gerry.

Dolores, who now works as an office aid in the Sachem School District, can empathize with other “tired” parents, but having pioneered her way through many barriers, she refuses to forget the importance of advocacy. “We’re all tired—we’ve all done a lot for our children. But you have to stay involved. You have to attend meetings and learn all of the necessary information.”

Denise still resides at home, but she recently considered moving into one of AHRC’s residences, where she attends the Weekend Respite Program.

“If she was happy, I’d be OK with it,” said Dolores. “It’d be great for the future—to know that she was in good hands,” added Gerry. The Sweeney’s are such strong supporters of AHRC—their continuous involvement with our agency pushes us to keep providing the highest level of programs, services, and supports for the children and adults that we serve.

To Delores and Gerry—a sincere thanks for all of your support! We just simply couldn’t do it without you.