Support Coordination

A Mother’s Mission

April 4, 2012

 One thing Jenny Wade has learned from being the mother of a child with special needs is never under-estimate your own power. You might surprise yourself.

That’s Jenny’s story.

When Jenny and her husband, Darrin, chose a home water birth for their son, they didn’t anticipate any trouble. They had done the same thing for one of their two daughters and enjoyed the experience. So Austin was born in September 2004 at the Wades’ Columbia home.

Because it was a home birth, Austin wasn’t given a Vitamin K shot, a mandatory procedure in most hospitals. The shot is given to babies in the hospital to help their blood clot.

At first, life was grand for the Wades. Austin was happy and healthy. But before long, the Wades were at the hospital concerned about bruising on Austin’s side. The couple took Austin to several doctors, but no one diagnosed the problem, and the boy’s condition worsened.

Nearly a month after his birth, Austin was admitted to the hospital with severe bleeding in the brain and a 1 percent chance of surviving. To relieve the swelling of his brain, doctors removed part of his skull. Eventually, doctors determined Vitamin K deficiency was to blame.

Austin survived the ordeal, but life has never been the same for the Wade family.

Today, 7-year-old Austin has the physical capacity of 4- to 5-month-old child, and more than 50 percent of his brain is damaged. He’s been receiving services through Boone County Family Resources since he was 3 months old. Austin can’t talk but makes some sounds like “Mmm.” Although he can be spoon-fed, Austin usually receives nutrition through a tube. This year he’s in the first grade in a special classroom. 

Jenny admits in the beginning she was obsessed with healing her son. She took Austin to numerous specialists; he even had stem cell treatments that the Wades believe have helped. But the pace was exhausting, and Jenny began to see that her grief and quest to help Austin had consumed her.

“At some point, I realized it was wearing on our daughters and the family,” Jenny said. “I’ve realized that I have to move on and live life and not make everything about Austin.”

Jenny’s new attitude came in part through her involvement with Partners in Policymaking, an advocacy group that teaches parents of children with disabilities and adults with disabilities how to advocate and lobby state lawmakers for changes in public policy that affect people with disabilities.

 In the beginning, Jenny spoke at the Capitol and met with politicians in hopes that Austin would be enrolled in the state’s Sarah Lopez Waiver, which would make him eligible for all state plan Medicaid services. The waiver is designed to assist families such as the Wades who aren’t eligible for Medicaid, but have a child with a severe disability and face daunting medical bills that are not covered by their health insurance. Only 200 children at a time can be served by the waiver. Hundreds of Missouri families are on a waiting list.

Austin was placed on the list, and for years the family waited – and Jenny advocated. The wait was excruciating, even for Michele Aylward, the BCFR Support Coordinator who has worked with the Wades from the beginning.. “It got to the point that I didn’t even want to pick up the phone and tell her” Austin had been passed over again, Aylward said. “But Jenny wanted to know, no matter what.”

The Wades racked up staggering bills, and the family buckled under the pressure. Besides expenses, the daily demands of caring for Austin were numbing. Jenny tried to keep up with the multiple physical therapies her son’s body required, but it was tough. She was stretched thin.

Finally, in February 2010, Jenny received the call from Aylward she had waited years to get: Austin had been enrolled in the Lopez Waiver. With her son finally receiving the services he needed, Jenny could have stopped her visits to the Capitol and gone home. But she didn’t. Jenny continues to advocate for families waiting for services.

“She is totally committed to this,” Aylward said. “It has been so wonderful to see this growth” in her. “I so appreciate it because I know it will help so many families in need in our state.”

Jenny never imagined herself advocating for change or writing letters to lawmakers. She credits Austin for empowering her to speak up and make a difference.

“It’s been life-changing,” she said. “I like the person I’ve become because of my son.”

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