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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In Miles from the Sideline, Maura Weis, wife of Charlie Weis, the head football coach at the University of Notre Dame, shares the challenges and joys of raising their special needs daughter, Hannah. Offering a glimpse into their everyday life and insights for other parents of special needs children, Maura's story will bring tears to your eyes and an increased awareness and compassion for the disabled.

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.
     


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Maura Weis

 Maura Weis is the co-founder and chair of Hannah & Friends, which she and her husband Charlie Weis, head football coach at the University of Notre Dame, started in 2003 to honor their daughter Hannah and all people with special needs. Maura lived on the East Coast for many years before moving to Notre Dame with Charlie and their children, Charlie Jr. and Hannah. In addition to her dedicated work on behalf of spreading the message of awareness and compassion for people with special needs, she is an accomplished horsewoman. Maura and Charlie's dream is to fund and build a farm for young adults with special needs that will be built in the South Bend area.


 
Hannah's development was normal up to age two. What happened then?
At age 2 1/2 Han went into a shell, she was unaware of her surrounding, did not make eye contact anymore and basically just wanted to clap and watch Barney. She no longer had interest in her family or friends.
What is Hannah's condition?
Her condition is called ESES and it's a rare seizure disorder in which the seizures only occur at night while she is sleeping. They do stop on their own in mid teens.
You encourage parents of special needs children to "be bold" on behalf of their children. What is your advice on how parents can be advocates for their children?
Being an advocate for your child means stepping out of your comfort level and being able to ask doctors questions and question their diagnosis, medications, make sure you get the answers and ask the tough questions. Do not let them intimidate you. Also do the same with teacher's, therapists anyone who is involved with you child. They cannot communicate and we must do this for them.
What is the goal of Hannah & Friends?
The goal of Hannah and Friends is three fold.
  1. Raise awareness and compassion for everyone with a disability. How? By educating people about different disabilities and also to ask them to step out of their comfort zone and try to understand what the person and their family is dealing with. It's hard enough to have a disability so why not try and make their lives easier.
  2. Hannah Helping Hands Grants, check our web site for more information. They are given to families with low to moderate incomes for music therapy, riding therapy, fun items such as trampolines, bicycles, swimming lessons etc.. We have even paid for respite which is a great help.
  3. We are building a farm that will house folks with disabilities, check the web site for pictures and information. www.hannahandfriends.org
What are some ways that parents of special needs children can create a home life that helps the child to flourish?
Parents can create a home life that helps a child flourish by being calm, giving plenty of love and making sure the child is always safe and cared for. Also again by being the child's advocate in many different ways. Lots of hugs go a long way even if they may not want them.
Tell us about some of the alternative and holistic therapies that have been helpful for Hannah, such as a wheat- and gluten-free diet and the healing therapy of reiki.
The wheat free gluten free diet is a must for Hannah. It has helped her immensely, I would not think of giving her anything other than the foods she can have. She must also avoid soy, corn and dairy. It was not easy in the beginning but now it has paid off. The Reiki Han received was from a retired nun named Sister Claudine in Rhode Island. All I can say is that she had a cyst on her kidney and after 6 months of Reiki when it was checked again it was gone.
Hannah was originally diagnosed with autism. Is she autistic?
Han is not autistic although she still deals with minor sensory issues so she still keeps her PDD diagnosis. She has mental retardation which was caused by the seizure disorder. Had she been diagnosed at 2 and half with it things may have progressed much better for her. This is why I tell every parent to make sure your child gets a 24 hour EEG.
How did you learn to differentiate between what is good for Hannah and what is best for her?
I think as a parent we intuitively know what is good for our children and what is best for them. This is the gift that God gives to each of us. I found the more I listened to my instincts which God has given me the better the outcome. The more you use your intuitive skills the better they get.
What has Hannah taught you about how God works through each person?
I have learned that although Han is very unique and "different" in many ways she is so much wiser than a lot of folks with various degrees. This little person has done so much in her lifetime. When I say this I do not only mean Han but all people with so called disabilities. These special children, young adults and adults truly know why God has placed them on this earth. They are here to love one another, educate us, smile thru adversity, work as hard as they can and they are truly the purest of pure on this earth. They do not have a malicious bone in their bodies, they only know love.
What are some ways that communities and individuals can help improve the quality the quality of life for people with special needs right now?
We can improve the quality of life for people with special needs right now by simply smiling at them or saying "hi". Helping a Mom while her child is having a melt down in a store instead of looking at her like she is doing something wrong. These things would greatly help the person and their families and it will cost you nothing. I guarantee you that your soul will feel like a million dollars after you perform this simple act. Also if there is someone in your family or a friend who has a person with special needs why not ask the family if they would like some time to themselves. You can donate an hour or a day and you have no idea how much that would mean to them, really it's that simple. Just be a friend.

 
Posted 02/26/2008