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O’Daniel wants to
make a difference
The Spina Bifida Association website claims spina bifida affects about 165,000 Americans and is the nation's most common permanently disabling birth defect. It occurs when a child's spine doesn't close during the first months of pregnancy. People with spina bifida usually require a brain shunt to drain excess cerebrospinal fluid.
In a telephone interview, 20-year-old Kara O'Daniel of St. Louis, Missouri, said: “I was born with spina bifida and have had 32 surgeries since then, including tendon transfers and most recently surgery on my bladder and intestines. Of those surgeries, many have been leg surgeries to help keep me able to walk.” She also has a learning disability affecting her reading comprehension and math abilities.
But early on, the surgeries and learning disability were the least of her problems. In fourth grade, for example, a girl in her elementary school learned Kara had spina bifida and wrongly accused her of being “mentally retarded.”
“Then all of a sudden everyone was saying I was mentally retarded and began treating me very differently,” said Kara. “They were rude and called me names. I have tried blocking out the memory. They called me a retard.”
Every day after school, she came home crying. Her grades nosedived. Finally, when Kara was in sixth grade, her mother and grandmother took matters into their own hands and started a Roman Catholic K-12 school for children with learning disabilities. It started with two students and has grown to 13. Kara graduated from The Academy of St. Louis in 2010.
She said, “When I went there, no one judged each other. I could concentrate on school work. I got all A's in high school because I wasn't worried about what people were saying and thinking about me.”
Now Kara has large dreams. A devout Roman Catholic, she has a motivational speaking ministry and has addressed audiences on topics such as acceptance of self, others, and struggles. Her family has been encouraging her all along.
As for beginning her ministry, she said: “One day I just thought I needed to begin sharing that people with disabilities can make a difference in the world. Just because they have a disability doesn't mean they shouldn't try hard. Also, people without disabilities need to be more accepting because people with disabilities have feelings too and should be treated equally and respectfully.”
Alzheimers: Just be there for them
In a telephone interview, 52-year-old Marsha Irvin of Grove City, Ohio, reflected on what has helped her cope with her father having Alzheimer's disease: “He has enjoyed this life and I know God is watching over him. We have put it in God's hands. There's nothing we can do now except be supportive. We all have our moments when we cry and think he isn't ever coming home from the nursing home.”
Affecting five million Americans, Alzheimer's disease is a progressive, gradual onset, fatal brain disease that causes memory, thinking, and behavioral challenges. It's the nation's sixth-leading cause of death.
As for Irvin's 77-year-old father: Donald was a Methodist minister more than 40 years in Ohio before retiring in 1998. A doctor first began suspecting something when, following a 2006 hip replacement, Donald couldn't remember the year when asked. He thought it was 1989. Soon after, his wife began driving the family car because he would lose his way. On another occasion, Donald drove off impromptu in the middle of the night and his wife had to call police to begin search efforts.
Two years ago at home, he suddenly began falling down and each time his wife had to call the life squad for help. They soon decided a nursing home was their best care option. He has been using a wheelchair since entering the facility, likely due more to his having diabetes than Alzheimer's disease.
Said Irvin, “We wonder how much he knows at any time, but we can see he still enjoys life. Yesterday he had a bad day; today a good day. Some days he can swallow and eat fine; other days my mom has to take him away from the table because he starts choking.”
Irvin's mother has been a pillar of strength, said Irvin, staying with her husband every available hour every day of the week. She has been there to prompt him into what to do and often reminds him to test for diabetes. Probably the Irvins' biggest test has been the financial strain of having to pay $7,000 a month to a nursing home and of having a special wheelchair built to increase Donald's comfort level.
She advised children of an affected parent: “The best thing is to realize Alzheimer's disease isn't their fault. Just be patient, don't criticize, and be there for them.”
Facebook: “Disabilities by Daniel J. Vance” [Blue Valley Sod and Palmer Bus Service made this column possible.]