Against all odds, Danielle Guinn is college bound.
Twenty-five years ago, Guinn’s mom, Lisa, was told that her newborn daughter would not be able to walk, speak, hear or see.
“Danielle weighed just one pound, four ounces at birth,” Lisa Guinn said. “She spent the first six months of her life in the hospital’s neonatal unit. My daughter wasn’t supposed to walk. She was supposed to be blind and non-verbal, but she’s a fighter.”
Guinn was born 24 weeks premature and was diagnosed with cerebral palsy, epilepsy and a mild intellectual disability. As daunting as that sounds, Guinn is not alone.
Would it surprise you to know that between 110 million and 190 million adults worldwide have significant difficulties functioning? There are millions of people who suffer from one or more chronic disorders that can create limitations, discourage progress and destroy dreams of leading an active, productive and independent life.
To understand the magnitude of what life is like for Guinn is to know how each disorder — cerebral palsy, epilepsy and mild intellectual disability — affects her body and mind.
Cerebral palsy is the most commonly diagnosed childhood motor disability in the U.S. According to the cerebral palsy guide, it affects normal movement in different parts of the body and causes problems with posture, gait, muscle tone and coordination of movement.
Premature babies and babies with low birth weights (under 5.5 pounds) are at a heightened risk of developing cerebral palsy. Around 10,000 babies are born each year with the condition. The Autism and Developmental Disabilities Monitoring (ADDM) reports that 1 in 323 children have some form of cerebral palsy.
Black children with cerebral palsy are 1.7 times more likely to need assistance with walking or be unable to walk at all, according to the ADDM’s 2006 data report. Around 41 percent of babies and children with cerebral palsy will have limited abilities in crawling, walking and running.
There are 3.4 million people in the U.S. and 65 million people around the world who have epilepsy. Epilepsy, which causes seizures and other health problems, is the fourth most common neurological disorder and affects people of all ages. It is estimated that 150,000 new cases of epilepsy in the U.S. will be reported each year. As common as it is, the public’s preception about epilepsy is often worse than the unpredictable seizures.
The American Association on Intellectual and Developmental Disabilities defines an intellectual disability as significant limitations in both intellectual and adaptive functioning, which covers many everyday skills. This disability originates before the age of 18. Intellectual functioning, also called intelligence, refers to general mental capacity such as learning, reasoning and problem solving.
March is Developmental Disabilities Awareness Month. Its purpose is to increase the public’s awareness about the the importance of inclusion, living and working with people who are not defined by their disability but instead by their ability and desire to be a productive members of their community.
The 2018 theme, “See Me for Me!” focuses on seeing beyond the disability, being acknowledged as a person and recognizing that a successful life is possible. People with disabilities are not conditions or diseases.
While many disabilities are obvious, it is important to remember that the majority of disabilities are “hidden” or “invisible.”
Guinn’s mother wanted the best for her daughter, so she made a decision to close down a demanding family business and devote her time to ensure that her daughter would receive proper care and an appropriate education.
“I became a licensed vocational nurse and worked part-time with two other people with developmental disabilities to allow me to have the time and flexibility to support Danielle’s needs,” Lisa Guinn said.
Knowing that her daughter was capable of learning more than her public middle school and high school offered, Guinn’s mom decided that an appropriate education ultimately involved home schooling.
“Danielle, in spite of her medical challenges, is a college-to-career success story,” said Larry Landauer, executive director of the Regional Center of Orange County. “She has overcome a lot with the help of Regional Center of Orange County and her mother, Lisa, who devoted her life to ensuring she had the frequent types of therapies she’s needed early on, including occupational, physical, vision and speech therapies.”
The Regional Center of Orange County has been essential for Guinn’s quality of life by helping to connect her with programs such as the College to Career (C2C) Program.
The center also funds critical services for her, such as providing her with an educational coach who helps her get to and from school, and specialized access transportation since her cerebral palsy makes it difficult for her to manage the large steps on a conventional bus. The service coordination the center provides is like putting together the various puzzle pieces needed to help Guinn live a full and active life.
Landauer adds, “While Danielle is humble and not at all boastful about her accomplishments, she is proud to have been accepted into the College to Career program offer at North Orange County Continuing Education, which is part of the North Orange County Community College District.”
Because enrollment is limited, prospective students must submit an application and participate in an interview process. The program, which runs from one to three years depending on the student’s course of study, includes educational and vocational support related to student educational and employment goals, as well as job placement and job support.
Because of her various conditions, Guinn needs 24-hour care and personal assistance at home and while at college. Although she hasn’t had a seizure since 2005, epilepsy can be unpredictable.
Her supportive services provide her with help getting dressed, bathing, cooking, using public transportation to get to and from college, and assistance carrying her backpack and school materials.
Despite living with her mother, Guinn is building a life of independence.
“I have a 3-4 hour round-trip commute to the C2C program, where I am working toward a career goal of becoming an administrative assistant,” Danielle Guinn said. “I have already earned certifications in the use of Excel, Word and PowerPoint computer software.”
Given her physical challenges due to cerebral palsy, she has an educational coach who accompanies her when she attends classes.
“I use a one-handed keyboard and audio record the classes to replay for studying,” Guinn said. “Sometimes I have a hard time in some of my classes yet I frequently achieve 100 percent test scores and A grades.”
Danielle Guinn knows what she wants and has done a great amount of research to find out what it takes to accomplish her dreams.
“When I am not studying I enjoy working out at the gym in my apartment building and watching dramas, such as Wonder and the Hallmark Channel,” Guinn said.
“I want Danielle to be a happy and healthy adult,” Lisa Guinn said. “I want her to reach her full potential, be as independent as possible, and increase her self-care skills. I would like her to be a contributing member of society as a volunteer and in a paid career so she can support herself.”
Guinn offers encouraging advice for others served by the Regional Center of Orange County who might be hesitant about pursuing their own career dreams.
“I would like people to know that you can do more with your life,” she said. “I want to live independently some day in my own apartment and manage my own life.”
“If you want your child to succeed, you have to put the work in,” Lisa Guinn said.
American Association on Intellectual and Developmental Disabilities – www.aaidd.org
Cerebral Palsy Guide – www.cerebralpalsyguide.com
Disabled World – www.disabled-world.com
Epilepsy – www.epilepsy.com
National Association of Councils on Developmental Disabilities – www.nacdd.org
Association of University Centers on Disabilities – www.aucd.org
National Disability Rights Network – www.ndrn.org
Regional Center of Orange County – www.rcocdd.com
Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to email@example.com and look for her column in The Wave.