Miles from the Sideline: A Mother's Journey with Her Special Needs DaughterMiles from the Sideline: A Mother's Journey with Her Special Needs Daughter
Maura Weis, Jessica Trobaugh Temple
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Excerpt


 
     

Talking Points for Maura Weis
A Mother's Journey with Her special Needs Child

"When we raise a child with special needs, the expanses and vistas are different, true enough, but as I discovered, the views are no less grand." —Maura Weis

In Miles from the Sideline, Maura Weis, wife of Notre Dame head football coach Charlie Weis, shares her family's experiences to prepare, preserve and encourage parents facing the challenges of raising a child with disabilities, including:

  • Trusting one's instincts as a parent, including questioning diagnoses and treatments and seeking out alternative therapies. Maura had success treating Hannah's chronic diarrhea with a wheat- and gluten- free diet that she learned about from another mother of a special needs child. Hannah also responded well to the healing therapy of reiki.
  • Learning to differentiate between what might be good for your child and what is best for her. "I moved beyond the idea that I'm denying my daughter many of the good things in life by refusing to take her to places other children might go only to make her the object of public scrutiny. I will not put Hannah in a closet, but I don't immerse her in situations simply because they are different or might be good for her."
  • Handling insensitive stares and unkind comments. "It's difficult to know which is worse: people continually peering at your child or not regarding her at all. Almost every time Hannah has a meltdown in public, at least one person will stare at me like I'm an ax murderer. Rarely does anyone offer help. I'm slower to respond with words. Instead I deliver my own look, which I hope conveys to people to watch their step. If that doesn't work, I do say a few words. It's my obligation to set people straight. I have faith in humankind. I trust that many people do not recognize the hurt they cause."
  • Dealing with doctors whose attitude is "your daughter is not right, she never will be right, so what's the point?" Maura points out that there are many caring doctors, but she has often gotten the impression that some of Hannah's doctors gave her less than their all. "The fact that Hannah could not verbalize her symptoms didn't help matters. Many doctors seemed to lack the patience for pursuing the cause of her problems."
  • Creating a home life that will help a special needs child flourish, preserve her dignity, provide comfort and foster independence.
  • Acknowledging the unique personhood of people with disabilities. "Hannah was not absent. From the outside, it may have appeared as if she were vacant, impenetrable. But we began to see all that was firing away in her mind. We discovered the person, the soul who resided in Hannah. As the years passed, the gift of Hannah unfolded before us."
  • Dealing with the anguish of losing a once "normal" child (Hannah has a regressive disorder and exhibited normal development until age two). "I sometimes found myself wondering if it would have been better had Hannah's disability been evident at birth, so we wouldn't be tortured by the memory of what used to be."
  • Improving the lives of people with special needs—now, not twenty years in the future. Maura Weis grew Hannah & Friends into a nationally recognized charity, while dealing with the responsibilities of being the wife of the head football coach at Notre Dame.
  • Approaching life day by day, moment by moment. "With that realigned perspective, any incident with Hannah was just that: one incident, nothing more. Spilled soda, just spilled soda. A nosebleed, just one nosebleed. A fit in a public place, just one fit, one place. God had taught me the art of reduction, simplification by taking life one moment at a time."
  • Seeking help for yourself and your family. Therapy helped Maura deal with her guilt over Hannah's condition, and she and Charlie implement practical measures to cope with stress. They have sharpened their awareness of their son Charlie Jr.'s feelings, taking extra precautions to make sure he never feels brushed aside; they preserve time together as a couple; and Maura finds time alone for herself.
  • Nurturing your spiritual life. Maura's Catholic faith sustained her and helped her find the strength to adjust to the restricted life of raising a child with special needs.
  • Recognizing how God works in people with special needs. "I am certain Hannah is in relation to the divine. As created individuals I believe we all possess that potential. Hannah brought me into a new realm of faith and love.... She is my daily ritual. I pass my days preparing her meals and laying out her clothes, wiping food from her face....by being present to each of these daily interactions, they bring me nearer the source of strength and hope, to the soul, to Hannah, and the common ground we all share that is beyond this world."