pioneer parents in indiana By Angela Arlington
About
Tom
O’Neill
34 Special Needs Living • December 2020
On August 31, 1978, Tom O’Neill’s son, Joshua, was born. He was born three weeks late and in critical condition. Because of a number of medical complications, the decision was made to immediately move Joshua from Lake Forest Hospital in Lake Forest, IL, to the neonatology unit at Evanston Hospital. During his 37-day stay in the neonate unit, Joshua experienced surgical procedures twice; one of them being major surgery. Besides the other medical complications, on the day of his birth, there was also a tentative diagnosis of Down syndrome; that was confirmed a few days later. Joshua was also born with Hirschprung’s Disease, a disease of the lower intestine. It required immediate surgery following his birth and another surgery 10 months later. Prior to their experiences with the neonatology unit at Evanston, Tom indicated that he had never heard the words neonatology or neonatologist. It was the neonatologist at Evanston Hospital, Dr. Tom Gardner, who gave Tom and his wife, Rita, the Down syndrome diagnosis. Dr. Gardner gave this information, as well as the other medical information, in an affirming and supportive manner. He was also the person who, according to Tom, “held their hands” and provided the supports that were so important and so helpful for them during Joshua’s first days of life. A year after Joshua was born, the O’Neills moved to Fort Wayne, IN. After one year of involvement and their growing dissatisfaction with the local pre-school that Joshua was attending, Tom and Rita, along with two other families, banded together and started a pre-school that they felt would better address the physical and cognitive needs of their children; needs that were not being met by the current program. They applied to the IRS and were granted 501(C)3 status. With that in hand, the three families went to the Fort Wayne community to raise funds. The funds raised, along with the tuition paid by the three families, kept the program financially afloat. They did not apply for and did not receive any government or United Way funds. While that made for some financial challenges, it also gave them the freedom to operate the program without unnecessary regulations. Tom said that he and Rita, as well as the other families, all felt that if they did not ensure the service their kids needed, “who was going
