by Mary Anne Ehlert & David Block
The job of a coach in professional sports is to motivate his players and challenge them to succeed. One coach found a way to inspire a special group of people with abilities far different from the athletes he is used to coaching. Just as Protected Tomorrows works to help individuals with special needs realize their potential and plan for their future, this coach and his wife have created a unique community where people with disabilities can achieve their own “personal best.”
Football fans know the name Charlie Weis. For over 20 years, he has held a number of coaching positions including: Offensive Coordinator of the New England Patriots and the New York Jets, Head Coach of the University of Notre Dame and now Offensive Coordinator of the University of Florida.
Many football fans might not know that Charlie and his wife Maura are highly respected for their philanthropic endeavors. They started the Hannah and Friends 501(c)(3) charity. Hannah and Friends provides grants to low and middle income families who have children with disabilities. The grants allow the families to buy fun things for their special needs children, that they could not otherwise afford. Maura said that she prefers to use the term, “people with different abilities,” instead of “special needs.”
Hannah and Friends is a result of Charlie and Maura turning a devastating personal event into something positive.
Hannah Weis was born April 7, 1995. Her mother Maura said that Hannah was developing normally. During her infancy, Hannah had a kidney removed. Maura said that nothing bad happened as a result of the kidney removal.
After Hannah reached 18 months old, things changed. Now, all Hannah wanted to do was to stare at TV; fast forward and rewind the VCR, according to her mother. “She would stare at her hand,” said Maura. “She had some clapping movements. She went from being normal to kind of being out of touch.”
Doctors diagnosed Hannah as having Autism and PDD (Pervasive Developmental Disorder).
Maura’s initial reaction was shock and incredulity: “There’s no way! She was just completely normal. How did this happen?’ I took her to a geneticist in New York; at Columbia Presbyterian.” The geneticist told Maura that Hannah was Developmentally Delayed. Maura said that Developmentally Delayed is a diplomatic term used in place of Mental Retardation.
“When I asked the geneticist, ‘Are we doing everything that we can? Are there any other tests that we can run for Hannah to find anything out?’” The geneticist responded, “I don’t think Hannah can handle any tests right now,” according to Maura.
Maura refused to accept this diagnosis. She took Hannah to about 10 neurologists. “None of them gave my daughter an E.E.G.” After Hannah turned 10, one neurologist consented and discovered that she was having seizures.
Maura had observed that Hannah was waking up at odd hours of the night, almost every night. When the doctor gave Hannah the E.E.G. over night, he discovered that she was having seizures while sleeping. Hannah was diagnosed with Landau Kleffner Syndrome, based on the distinctive brain wave pattern on the E.E.G. Maura said that people could not see Hannah’s seizures because they happened while she was sleeping. Maura said that not too many children have Hannah’s seizure disorder.
“Hannah is developmentally delayed now,” said Maura, “due to the seizures damaging her brain.” Maura explained that if Hannah’s seizures had been caught earlier, medication could have alleviated the problem.
Maura said that too many people are lumped into the Autism category because doctors often fail to do a thorough medical diagnosis. “When there are other things that are manageable and can be dealt with through surgeries, or through medications, sometimes doctors settle for a diagnosis of Autism Spectrum Disorder.”
The Launching of Hannah and Friends
About 10 years ago, Charlie and Maura Weis performed a simple act of kindness – they donated three handicapped accessible bicycles, which resemble adult-tricycles to Hannah’s school for other challenged kids there to use.
“It was great to see the other kids’ smiling faces, when they had something that they did not have before,” said Maura. This inspired Charlie and Maura to launch Hannah and Friends.
Hannah and Friends has now established a special neighborhood (community) on 40 acres of land in South Bend, Ind., for people whose abilities differ.
Maura said that the neighborhood has speech, yoga and cooking classes. There are dances, wagon rides, and an animal club. “We have goats and six horses,” said Maura. “Hannah doesn’t ride horses, but she loves the wagon rides. We have walking trails. It’s a great peaceful place where the public is welcome to come. The kids and the adults (who live there) can be themselves and be happy.”
Hannah, now 16, lives a comfortably happy life. Although still non-verbal, she has fun, particularly when she is with her other challenged friends at dances. She loves being in the pool. “If you put Hannah in a 15-foot deep pool, she will not drown,” said Maura. “She does a great dog paddle.”
Maura and Charlie are concerned about Hannah’s future and the future of children with similar challenges.
Maura said that there are many agencies and people focused on helping the elderly, but there is less focus on helping people with different abilities. “For many of them, their lives are just beginning,” said Maura. “There’s a huge population now that have no homes to live in. There’s not too many jobs available for Hannah and the thousands of Hannah(s) out there. Unfortunately, many parents feel as though their child is the only one like that. It’s not true.”
For more information about Hannah and Friends, go to www.hannahandfriends.org