Weis speaks to Saint Mary’s students about developmental disorders
Amanda Shropshire and Nicole Zook | Friday, February 17, 2006
Notre Dame head football coach Charlie Weis discussed his experience as the father of a child with developmental disorders in a talk to students at Saint Mary’s Thursday.
Weis asked the standing-room-only crowd in Vander Vennet Theater to imagine their first child – “apparently thriving, apparently normal” – fade into her own little world, “almost like a fog.”
That was the case with Weis’ daughter Hannah 11 years ago when she was first diagnosed with Persuasive Development Disorder (PDD). Weis said he and his wife, Maura, went through a difficult time, asking themselves what they did wrong after realizing the problem could not be fixed.
“PDD is kind of a catch-all,” Weis said. “They have autistic qualities, but it doesn’t matter if [the child is] autistic or not.”
While people who suffer from PDD can have a variety of symptoms, Hannah’s include autistic qualities, severe food allergies and multiple seizures.
Fortunately, Weis said, he and his wife had the financial resources to help their daughter. They soon realized developmental delays affected families around the world, and they wanted to help. The pair founded Hannah and Friends, a nonprofit organization dedicated to providing better quality of life for children and young adults affected by autism and global delays.
“This is not a promo on charity work,” Weis said. “This is telling you how you can make a difference with any disorder. We did not go raise money for research. We were trying to go right to the kids to make their lives better.”
Weis said the original goal of the foundation was to raise $100,000 per year. But every grant requested in the first year was satisfied, and the foundation now raises more than $500,000 every year.
Weis said the organization fulfills needs such as fences for backyards – so children do not wander off – and computers for kids to speak through.
Weis, who calls himself a “very private person” and said he had “zero awareness of autism” prior to Hanna’s diagnosis, now receives more than 2,000 requests to speak each year – donating all of the speaking fees to Hannah & Friends.
“To be honest with you, I don’t really like talking about football,” Weis said. “On the flip side, I don’t have much of a problem talking to students or anyone about people who are globally and developmentally delayed, because it is personal.
“Winning football games doesn’t do me any good. I’m a miserable person as a football coach, because if I don’t win every game, I’m not happy,” he said. “The good part of me doesn’t come from football. [It comes from] bringing compassion to people who just don’t get [autism].”
Weis said he attempts to give his audience “a grasp of what you really deal with” when someone you love has autism.
“There is no day that it doesn’t affect you,” Weis said.
Weis said he and his wife have a long-term goal of building a farm with multiple dwellings for people with special needs to live and work on. Weis said this project was inspired by Hannah, who is “a very social girl – she likes to have friends.”
“We’ve tried to involve her more in social programs with other kids with special needs,” Weis said. “She has a heck of a lot more fun because she realizes she’s not alone.”
Weis said the farm would be geared toward people with various special needs and would allow them to live fulfilling lives almost on their own. He also said he and Maura “greatly look forward to the day” Hannah lives on the farm.
“I will not consider my success based on football,” Weis said. “The day Hannah is taken care of, my son and wife are taken care of, I will have done my job.”
Weis also said Hannah serves as inspiration to the Weis family every day.
“My wife and I talk about her as an angel,” Weis said. “Hannah came to us so we could do some good. She was given to us to be a messenger. Our lives are much more fulfilled because of what she has given to us.”