Everyone has a story, and every single one of us will struggle with something in our lifetimes. Character is built by how we handle our challenging situations, and mothers have the strongest character of all when they are fighting for their children. These three incredible women have created something amazing out of their struggles, and their legacies will be built on the positive changes they have made within their own families, within their communities, and to those around the world.
Becoming an adult is an exciting and challenging time for most individuals, as we mature and decide where our path in life is going to take us. It is full of possibilities and opportunities, and we are free to venture out on our own to pursue interests and relationships that will shape the course of our lives. However, for individuals with intellectual and developmental disabilities (IDD), the options that the rest of us take for granted are often limited.
According to a 2018 study funded by the Kronkosky Charitable Foundation on behalf of Autism Lifeline Links, an estimated 21,600 adults in Bexar County have autism or an IDD. In addition, only 10% of these individuals were receiving formal service coordination through the Alamo Area Council of Governments as of last year. Individuals with special needs age out of the public-school system at the age of 22 years and the options for continuing education are very limited in San Antonio. This poses a challenge for families with loved ones who have IDD because there is often no one to care for them during the day when other family members are working. However, one dynamic woman is striving to change this situation in San Antonio with the SA Life Academy, a program that offers partial day continuing education for individuals with IDD.
Cindy Boynton grew up in Houston and has a Master’s degree in Special Education from the University of Houston. She is a mother of three and a grandmother of two, but it was her son, Drew, now 25, who inspired her to envision and create the SA Life Academy. Drew was born with Down Syndrome and diagnosed with autism in 9th grade. When he aged out of the system, Cindy realized that his options for continued education as an adult were scarce. It was through her research into available options in San Antonio, and other Texas communities, that, with the support of her husband Bryan, she began to develop a program that provides a safe and stimulating environment where adult students can continue to grow academically, physically, creatively and socially.
The SA Life Academy opened in 2017 at St. Andrew’s United Methodist Church in Alamo Heights with 12 students. Today the program serves 40 students throughout the week and employs two full-time special ed teachers and several adjunct specialists that teach life-enriching skills. Classes are kept small, and students learn various life skills like relationship building, expressive creativity, academics that focus on skills, knowledge and social behaviors, community involvement, and health and wellness.
Cindy states, “It is the curriculum that makes the program succeed. Our teachers are amazing, and they are the key to the success of our students.”
The mission of the SA Life Academy is to provide exceptional learning opportunities to help individuals with IDD live full and active lives. The vision of the SA Life Academy is that they may live meaningful and purposeful lives in the community. Cindy, along with her exceptional staff, is definitely making a difference in the lives of individuals with IDD and their families. The program continues to grow and will be adding another class in January 2020. The Academy relies heavily on donations and grant funding.
Thanks to the commitment of Cindy Boynton and her dedicated staff at the SA Life Academy, individuals with IDD now have options as they grow into adulthood here in San Antonio. These individuals now have a unique and safe environment where they can learn and grow and enjoy a community of other individuals just like them, and they can do life together.
Dr. Jannine Cody
The human body, when correctly developed, contains 23 pairs of chromosomes in each cell. Each chromosome determines our DNA; who we are, how we look, and how we are wired. However, in nature, sometimes things aren’t perfect, and some individuals are born with chromosome abnormalities that affect development and basic human function. Less than one-half of one percent of all live births are affected by chromosome abnormalities and when you break down these abnormalities by which chromosome is actually affected, it makes some conditions extremely rare.
Such is the case with conditions resulting from Chromosome 18 abnormalities which has become the life’s work of Dr. Jannine Cody. The Chromosome 18 Clinical Research Center, at UT Health San Antonio, is the only laboratory research center in the world focused on conducting research relating to chromosome 18 abnormalities and developing treatment and intervention options that can help people with this condition live healthy and productive lives.
Dr. Cody realized that something was not typical with her second daughter, Elizabeth, from birth. She was born with a cleft palate, cleft lip, and her feet curved inward. Chromosome analysis revealed that Liz had a deletion of the end of the long arm of chromosome 18, called the 18q- syndrome. She had several surgeries, and when she was two years old, it was determined that Liz was not growing correctly and ranked below 3% on the growth charts. She was diagnosed with a growth hormone deficiency and had to undergo shots to help her grow.
Cody was living in Witchita Falls at the time with her husband and her older daughter, Catherine. The doctor who administered the test handed her a page copied from a medical textbook that described patients with the 18q- syndrome. It was disheartening and frightening, and Jannine went into fierce mama bear mode to find out all she could about Liz’s chromosome abnormality. Luckily, her husband was in the Air Force, and the family would soon move to San Antonio, where Liz would have access to some of the best doctors in the country at Wilford Hall Medical Center.
The Chromosome 18 Registry & Research Society, started with Dr. Jannine Cody to provide support, information and funding for research
It was in San Antonio that Cody enrolled in the Ph.D. program at the University of Texas Health San Antonio. She had previously earned her B.S. in General Science and her M.S. in Biology from the University of Iowa. She graduated in 1997 and is now a professor in the Department of Pediatrics at the UT Health San Antonio. Dr. Cody’s created the Chromosome 18 Registry and Research Society. After meeting the parent of another child who also had 18q- syndrome in 1990, she began to wonder how many other children also had this particular abnormality, and she wanted to put together a group where families from around the world could come together to get information and access research about chromosome 18 abnormalities. Starting as a “support group,” today, there are over 4,000 individuals registered. Families who want to participate in the clinical studies must provide a blood sample. One aspect of the study can involve assessments by numerous medical specialists in San Antonio. Since 1993, the Clinical Research Center has enrolled almost 700 study participants.
The Chromosome 18 Registry & Research Society hosts an annual conference for families, researchers, and doctors to learn more about the latest findings and treatments for the resulting conditions that stem from a chromosome 18 abnormality. The conference is held in various cities across the U.S and is held in San Antonio every four years. Dr. Cody’s tireless devotion to her research and the individuals that it affects will become a unique legacy for a mom who just wanted some answers and some hope that her daughter could have a better life.
Jennifer England Allen
For parents of children who have special needs, there is that “aha” moment when we realize that our child is, in fact, different, and that we will need to make accommodations, research resources and adjust our expectations of what we thought life would be like.
For one San Antonio mother, that moment came when her son, Sam, was nine years old. Jennifer Allen recalls how her younger son, Charlie, ran into the house to tell his mother that the neighbor boys were throwing rocks at Sam, and that he was just standing there, allowing it to happen without trying to defend himself or run away. When Jennifer ran outside to get Sam, she realized that something “not right” about Sam’s lack of response. Doctors dismissed Jennifer’s concern and told her that there was nothing wrong with Sam. But through her tenacity, Jennifer found a doctor who labeled Sam with a diagnosis of autism, and Asperger Syndrome.
Individuals diagnosed with Asperger Syndrome have average to above-average intelligence and do not have the language problems typical of those diagnosed with autism. Individuals struggling with Asperger Syndrome will usually demonstrate difficulty interacting with others socially and repeat behaviors. Currently, the diagnostic manual used by the medical community to identify and define the level of autistic neurological deficit does not recognize Asperger Syndrome as a separate diagnosis, but, it places the symptoms on the Autism Spectrum as high functioning.
Jennifer, a dynamic and enthusiastic force of energy describes her history as a broadcaster, a concerned parent, and, ultimately, an activist. A graduate of Abilene Christian College, she started her career in West Texas, as a news anchor, and then as a producer. She moved to San Antonio with her husband, Herb, and gave up her career to take care of her boys full time, trying desperately to find information and resources for Sam. Unable to find answers, Jennifer created a resource that other parents were looking for, the Aspergers101 organization and website in 2014. This non-profit program assembles the most up-to-date, daily information about Asperger Syndrome from autism experts and doctors committed to helping these individuals live their best lives.
Jennifer and Sam have, most recently, been the leading force behind legislation that went into effect in September. The Samuel Allen Law provides a restriction designation on all Texas drivers’ licenses for individuals with a “communication impediment.” This designation will also be visible in the Texas Law Enforcement Telecommunication System and will alert officers when they encounter a driver who may have a condition that may be misconstrued as uncooperative when stopped and questioned. They have also effected a change in the way that officers are trained. Peace officers will now undergo specialized training on how to handle a driver with a communication impediment, creating a safer and less stressful situation for everyone involved.
At a recent press conference at the state capitol, Samuel stated, “As a person diagnosed with Autism, I have faced challenges. These challenges don’t affect my driving, but they could be misinterpreted by a police officer during a traffic stop.”
When asked how it feels to be such a pioneer in championing the needs of people like Sam, Jennifer states, “I’m honored and exhilarated that we can help change the way that people view others with autism. There are gifts where there are deficits, and we are striving to change the mindset of what people believe autism to be.”
Aspergers101.org has become a go-to resource for families looking for answers and looking for hope for their loved ones diagnosed with Autism and Asperger Syndrome. Jennifer’s tireless work with Sam will have a positive impact on many drivers for many years to come.
Mothers are the strongest individuals on the planet. We will do anything to protect our children. It is our job to nurture them through childhood and prepare them for a challenging world as adults, but we will face many uncertainties along the way. It is how we embrace and handle these challenges that shape not only ourselves and the lives of our children, but the ability to effect a positive change for others who may be struggling as well.
By Meredith Kay
Photography by Jason Roberts