In 2003 Charlie & Hannah Weis founded Hannah & Friends, a nonprofit foundation that focuses on providing a better quality of life for children and adults with disabilities.
Vendor: Sorin Books
Publication Date: 2008
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Notre Dame Football Coach's Wife on Raising a Special Needs Child:
Parents Need to Be "Bold" Advocates for Their Children
Maura Weis, the wife of Notre Dame football coach Charlie Weis, tells the challenges and unexpected blessings of raising a child with a disability and how she evolved into a fearless advocate for her daughter and other people with special needs in her new book, Miles from the Sideline: A Mother's Journey with Her Special Needs Daughter.
The Weis' daughter Hannah showed normal development until age two, then began exhibiting aspects of autism. After a series of diagnoses, Hannah's condition was identified as severe global developmental delay (mental retardation) caused by a rare seizure disorder: Electrical Status Epilecticus during Sleep, or Tassinaris syndrome. It is characterized by the sudden appearance of autism-like characteristics in the toddler years.
Children with such regressive conditions undergo devastating changes: "It is literally like going from day to night," Maura says. "Hannah was there, and then she wasn't." Now 12, Hannah can't dress herself or make her own breakfast. She has a limited vocabulary and is frustrated when she can't communicate with others. Still, she is healthy and cheerful, and finds ways to express love and affection.
Maura encourages parents to "be bold" on their child's behalf. "As parents, we are the best and sometimes the only advocates for our children." Her experiences have fostered a boldness for dealing with Hannah's physical and emotional concerns. "No one knows my daughter better than I do," Maura says, "She is with me every day. She is my daily ritual."
For all their expertise, the succession of pediatricians, therapists, geneticists, and neurologists who have evaluated Hannah do not know her the way her mother does. The courage and clarity of mind she has grown into allow Maura to trust her instincts about what is best for her daughter, which may mean questioning diagnoses and treatment options and searching for alternatives.
It has also fueled Maura's passion for raising awareness and compassion for people with disabilities, focusing on making life better for them now, not in the future. In 2003, she and Charlie founded Hannah & Friends (www.hannahandfriends.org), a nonprofit foundation that focuses on providing a better quality of life for children and adults with disabilities. It provides funding for the construction and ongoing operations of a residential community for adults with special needs on thirty acres in Northern Indiana.
Though the Weis family has financial stability thanks to Charlie's career as a pro and college football coach, they face the same heartbreaking reality millions of other families experience. Maura offers parents of special needs children understanding and encouragement that only someone who is in their shoes can give.
"Our hope for Hannah is every parent's hope for their children: happiness. Charlie and I know we can't make our daughter happy. We can however, create a home life that will help her flourish, preserve her dignity, provide her comfort, and foster her independence. In return, Hannah reminds us of our life's abundance. She has given us new lenses to see the true gifts of people with special needs," Maura says.
"Hannah has taught me that unconditional love is the reason we are here on earth," Maura says. "Her love has always shone through, since she was a baby."