An Excerpt Story from Noble Paths of People Who Serve…Discover Your Noble Purpose Through ‘Appreciative Life Reflection.’
Making a Difference for Those Who Make a Difference
We all yearn to find meaning and purpose in our lives But what about those people who are developmentally disabled; what gives meaning and purpose to their lives? Perhaps, their lives actually create meaning and purpose, inspiring “typical”[1] people to see what is really important in life and to act with noble purpose.
Matthew Byra, twenty-nine, is deaf, cannot speak, and has been developmentally disabled since birth. At birth, he had hydrocephalus, severe swelling of the brain caused by spinal fluids that do not drain. Contributing to the hydrocephalus was a Dandy Walker cyst in the cerebellum that inhibited his body’s ability to drain certain fluids from the brain. In the first year of his life, Matt had eight brain surgeries. For years after, he had three shunts to drain the fluid that was causing his brain to swell.
Matt’s mother, Ellie, was constantly by his side as his chief advocate, a role she naturally assumed as his mother but one that has been indispensable to his survival. It was also a role in which she had to ruffle some feathers from time to time. When Matt was three, his father’s company transferred him from New Jersey to Louisiana. Though Ellie was apprehensive about leaving the network of medical care which they had always relied on to care for Matt, she decided her worries were needless since; after all, there were doctors in Louisiana, too. From the vantage point of twenty-six years later, Ellie describes the medical profession in Louisiana, then, as “bizarre”. The medical staff did not appreciate her asking questions about Matt’s treatment. At one point she suggested that they send for Matt’s medical records but was rebuffed. She was told they were not needed.
Soon after, Matt began having seizures regularly and, at one point, had one that was ongoing and even life threatening. Once he was hospitalized, the neurosurgeon on the case administered Phenobarbital without consulting with Ellie. Matt’s condition worsened. His seizures became so uncontrollable that padding had to be placed around his crib to protect him. Naturally becoming more concerned, Elle started to ask questions more frequently. The doctors’ reply was always simply that this was “normal for his condition.”
Then one day, at the hospital, Ellie met a pediatrician from Michigan. After hearing her story, the pediatrician concluded that Matt was having a bad reaction to the Phenobarbital. The pediatrician was unable to talk to the admitting neurosurgeon about changing the medication, however, since he was not high enough in the hospital hierarchy. Ellie had to fire the neurosurgeon to get Matt’s medication changed.
Once the medication was changed, the uncontrollable spasms ended. Matt was still experiencing seizures and constantly vomiting, however. Ellie visited another neurosurgeon and began telling him her son’s story, hoping to convince him to accept Matt’s case. The doctor cut her off and said, “I know about you. You’re the women looking for a cure for her son. I’m not taking your case, nor will any other doctor.” Ellie was flabbergasted. When she told her husband, he didn’t believe it until he called the neurosurgeon himself and was told the same. Finally, however, they found a willing doctor at Tulane University. Before he could get involved in Matt’s case, however, they were relieved to learn that they would be transferred back to New Jersey.
Within six weeks of being in New Jersey, Matt was diagnosed with esophageal reflux and the problem was resolved. To this day nearly twenty-six years later, Matt continues to have serious medical problems, wears diapers, and experiences two to three Grand Mal Seizures a week. He needs constant care and attention and, during the day, requires the assistance of a personal aide.
Over the years, Ellie has become a vocal and passionate advocate not only for her son, but for all people with developmental disabilities. She has fought for the inclusion of special-needs children in the state’s public school system and for the right of families to self-determine the direction of support services they receive. She remains active in statewide planning for such self-determination rights. Local and state executive and legislative officials have come to know Ellie and her tactics. If she walks into your office with a tin of fresh baked cookies, you know she has her advocacy hat on.
Even before Matt was born, Ellie’s experience was seemingly uniquely constructed to make her a loving, caring mother for Matt and an effective advocate for families of children with developmental disabilities. She learned at a very young age the impact that a disabled child places on the family: Ellie’s younger sister had the same condition as Matt. Then, in high school, she was inspired by her civics teacher who conveyed the importance of “making a difference in the world.” She knew she wanted to make a difference, but at the time, was not sure how she could. Likely as a result of the influence of her sister and the inspiration of her civics teacher, Ellie received a teaching degree with a master’s in special education. Ellie thought she would make a difference in the world by being a special education teacher, which she did indeed do for seven years before Matt was born, but now she sees that the real differences she has made have been not only because of Matt, but also through him.
Ellie says Matt has always inspired others to do good deeds. For example, when he was younger, Matt rode the bus to school every day. The driver did not like having Matt on the bus because he was noisy. (Because of his condition, Matt tends to continually moan and grunt.) One day, the driver yelled at Matt to be quiet. A student immediately took the driver to task for his insensitivity. The student ended up in detention that day for his actions, but the boy’s mother was proud that her son stood up for someone who could not defend himself.
Matt has also had an impact on children who feel unsuccessful; after being with him, their attitudes about themselves usually change. When Matt began public school, his first buddy was a boy named Dennis, who had always exhibited behavioral problems in school and, consequently, did not do well academically. Dennis supported Matt from the moment they met. Ellie remembers the day Dennis’s mother called to thank her for the positive impact Matt had on her son’s behavior. She told Ellie that Dennis’s behavioral problems had subsided and that he had begun improving in school.
Another person who befriended Matt was Jillian Casey, then a high school senior. Jillian served as a kind of buddy to Matt spending time with him so as to give his family, especially Ellie some time to do errands and have some respite. As it turned out, however, she received more from him than she felt she gave in return. In fact, Jillian proudly asserts that Matt changed her life.
Jillian’s desire to help developmentally disabled children did not start with Matt, however. It began in middle school when she witnessed students making fun of a classmate with Down Syndrome. She was not sure how to handle such an incident, and so did not take any action, but it bothered her so much that it stuck with her, and she grew curious about developmental disabilities. So during her freshman year in high school, Jillian volunteered to work in the school’s Special Olympics program to learn more. Her interest grew, leading her to do more volunteer work, first, for the Challenger Baseball program, in which she helped autistic children under ten, and then again for her school’s Employer Transition Solutions program, in which typical students accompany special education students working in local businesses. The special education student was paid by the business, and the typical student received a modest stipend from the school.
In the Special Olympics program her junior year, Jillian was assigned to coach Matt. She said that they clicked immediately. “Some people might look at Matt and feel bad for him,” she says, “but I look at his smile, and I’m happy.”
As Jillian progressed through high school, she began to feel that something was just not right with her. This “off” feeling eventually led to what Jillian later learned was serious depression. At first, however, she struggled with the problem silently, unsure what was wrong but too ashamed to talk about it or get help. Only much later, in college, did she learn not only that she was depressed but also that she had Polycystic Ovarian Syndrome, which contributed to the depression. It finally took working with Matt to help Jillian face her problem.
Watching Matt keep going with his life inspired her to overcome her pride and get the help and medication she needed. “I have always been inspired by Matt and the happiness inside his heart; he is a presence you cannot ignore. Anyone who meets him will come away with a completely new outlook,” she says.
The summer before college, Jillian provided daycare for Matt every Saturday at her house. Her family looked forward to having Matt over every week and was disappointed when he could not come. Jillian’s mother sometimes rearranged her schedule just to be home when he was there. Jillian’s thirteen-year-old brother looked forward to working with Matt in the Special Olympics during high school.
Today, she is a sociology student at the University of North Carolina and plans to attend law school. But she says that what she is doing right now is more than just pursuing a degree. She intends to make a difference in the lives of people with developmental disabilities. Her dream is to use her law degree someday to advocate for those with developmental disabilities. At UNC, Jillian is involved in the Best Buddies program, in which she is paired with adults and teenagers, whom she visits in group homes. She also worked with Matt during a summer break and traveled to Louisiana for eight days to help rebuild houses on Native American reservations damaged by Katrina. After that she traveled to Tanzania for a month to work at a special education school. “I’ve become addicted to helping children with developmental disabilities,” she says.
Because of Matt, Ellie has been driven to make a difference for countless families struggling to create better lives for their developmentally disabled children. And because of Matt, a promising young lady has given a good part of herself in service to others like him, and she is pursuing a life dedicated to this noble purpose. Matt just brings out the best in people—Ellie, Jillian, Jillian’s family, Dennis, the boy on the bus, just to name a few. He has changed lives for the better just by being who he is: a person who makes a difference to those who make a difference.
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[1] Parents of disabled children often refer to those without disabilities as typical.
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