When Tom and Rita O'Neill's son Josh was born 42 years ago with Down syndrome, he was immediately diagnosed in critical condition and required two surgeries over the next 37 days. His life depended upon his oxygen machine.
“You watch this infant striving to live, and I remember thinking this guy is really tough because he wasn't supposed to live,” Tom O'Neill said. “He's a strong soul.”
Rita O'Neill remembers that none of the nurses thought Josh would survive. But he did, and that pushed the O'Neills to fight just as hard to forge a way for him to live and thrive.
The couple became teachers, not in the traditional profession, but their lessons changed people's outlooks on the treatment and opportunities for people with disabilities, especially those with Down syndrome. Mostly they led by example.
For more than 40 years, the O'Neills have supported organizations focused on Down syndrome and other disabilities through volunteer roles and philanthropy at the local, state, national and international levels.
The couple were honored in March by the National Down Syndrome Society for their efforts. More than 500 people, including friends and family from across the country, participated virtually.
Money was raised during the event to continue the O'Neill Tabani Enrichment Fund, which since 2005 has enabled 185 people with Down syndrome to take courses, receive vocational training or pursue other experiences in vocational training or artistic pursuits through enrichment classes.
Even the fund is a subtle teaching opportunity. The couple kept providing examples of what could happen rather than prescribing limitations when it came to those with disabilities.
“I've made mistakes in words I've used, judgments I've made over the years, and Tom educates rather than points out errors or flaws,” AWS Chief Executive Officer Patti Hays said. “He's constantly teaching and sharing his experience, not in a preachy way, but by sharing his experience, he's allowed me to shape my thinking.”
Like many parents, the O'Neills' lives were shaped by their children. Tom, 74, was a partner in Admetco, a non-ferrous scrap metal company, while Rita, 75, was running things at home as she cared for Josh and Noah, who was born three years later.
“I think we thought from the beginning that everybody around us would take their cues about Josh from us,” Rita said. “They were going to be watching us, and as long as we were positive, and hopefully they would look at it the same way, and our attitude would rub off on them. It was like all kids in all families, you go where life and your kids take you.”
They were invested in their children's lives, trying to make them better. That included learning about Josh's disability, as well as leading and setting examples. They wanted to be as knowledgeable as possible to provide him with the best opportunities.
“I used to tell parents of newborns with Down syndrome that you have your idea of parenting and your values and goals for your children,” Rita said, “and you just apply them to all your children. They all have different personalities, and when they have a disability, you have to modify that a little. It's not the same for everyone, so you adjust, but the framework is the same.”
The couple's first major project was co-founding The Learning and Development Center in 1980 with two other families. It was a preschool for children with disabilities. They hired a teacher and a speech therapist on a consulting basis. There were three students the first year and the numbers grew. The program continued until 2005.
Rita and Tom were founding members of the Down Syndrome Association of Northeast Indiana. Tom O'Neill also served on the board of the National Down Syndrome Congress nine years, three as board chair, and the National Down Syndrome Society board 15 years, serving as board chair three years. There were other boards as well, including the AWS Foundation.
He has met with elected officials, such as congressmen and senators, with the belief that in order to make things happen and change you have to put your neck out there, he said.
“It was just to help the movement,” he said. “I don't know if we dreamed about it or if it was just a day at a time and things just continued to happen. There wasn't a grand design.”
But one developed along the way, including when public schools began accepting students with disabilities and learning challenges into their buildings. For most people involved, that required a different way to think and teach.
“I used to say to teachers and principals (that) these children who come into this school when they are young will just be classmates of other children,” Rita said. “Those children will grow up with this experience, and some of these children someday are going to have a child with a disability and their experience now is going to influence their thoughts and attitudes in the future. That's the long term of this.
“There was a lot more to it than just Josh having this experience; there's everybody else, too.”
Living on own
Josh graduated from Homestead in 1998 and lives semi-independently, with support services, in New Haven, Connecticut. The support services are provided at Chapel Haven Schleifer Center. He also takes classes for cooking and art, has a computer teacher and a workout trainer and a support staff person. He works in a community café.
Josh had a girlfriend more than 20 years who recently passed away.
The O'Neills have a home in Connecticut where they can spend time with Josh. They split their time between there and Fort Wayne.
For them, they know Josh has a full life.
“It works both ways,” Tom said. “He provided and gave a wonderful life to us, also.”
He also gave the couple a mission that was the basis of their life's work to help make life easier for people like Josh.
“I think my appreciation for everything my parents did has come out since I've been a parent over the last six to eight years,” said Noah, who lives in Chicago with his wife, Ashley, and their three children. “One of the best things they did was try and mainstream Josh as much as possible and not limit him in any way.
“Josh also has a lot to do with this in that he had tons of challenges and he does a great job and has a positive attitude. He's a hard worker and is determined to do the things that he does.”