Autistics, Epileptics Feel Like More Than Conquerors Through Revolutionary Support Groups
In this issue’s Letter from the Editor, we briefly address the matter of health and wellness in perspective of diseases and ailments that exist today that did not seem to exist, at least in present forms, generations ago. Then there are diseases for which cures seem close at hand… and some very elusive. And there are some ailments that the causes, much less cures, remain mysterious.
Two such afflictions are autism and epilepsy. It is a false assumption, although maintained by some, that autism has been around forever in the human family, but lately has found publicity and an ID. If you have autism, or a family member does… you know that it is real.
Epilepsy has a different profile, but with similar medical frustrations. It has been around throughout history, but doctors do not believe there is an epilepsy germ waiting to be isolated and treated. Its symptoms are relatively standard, but its causes—and cures—are elusive. Maybe emotional, maybe allergic, maybe chemical, maybe… anything, as far as modern medicine knows.
But health and wellness are goals of us all, whether we are researchers or family members or sufferers ourselves. In the meantime, and unlike most times throughout history, “sufferers” no longer suffer in silence or isolation. As research continues, so does compassion, greater understanding, support groups and encouragement.
These areas of personal and emotional support are, in their own ways, as revolutionary and life-affirming as anything short of miracle cures. This is an exciting time for those patients and families who were distraught in the shadows.
This is the story of one patient who is blossoming in many ways, and two organizations that we will feature in future issues of Innovative Health Magazine.
Heather Rose Atkinson is a 24-year-old from La Mesa, Calif.; and her story, an increasingly typical story for those with autism and epilepsy, is truly inspiring.
In the interests of full disclosure, I will state that Heather’s parents are old friends of mine. Her father Mike is a well-known figure in youth ministry (Youth Specialties and Youth for Christ) and her beautiful and talented mother Stacy is mother to seven other children. I met the Atkinsons when I worked at YS too. The second confession is a latent pun: I said that Heather is blossoming. It is a mere coincidence, honest, that she participates in the family’s plumeria activities (a rare tropical flower they cultivate and exhibit); and she aspires to open a flower shop someday.
That said, Heather is blossoming. Here is her story:
She was diagnosed at the young age of 1 with epilepsy, and later was charted on the Autism Spectrum. Epilepsy is treated, not cured, although its course and severity are unpredictable. When doctors told Mike and Stacy that “we can’t stop the seizures,” it was familiar news to parents. Epilepsy can be somewhat controlled and even countered under several approaches, but it stays as long as it wants, like unwelcome relatives.
Heather is the youngest of her siblings and the only child in the family with such disabilities. She had her first seizure when she was a 1-year-old, and doctors hoped that she would outgrow her seizures. Some children do; but Heather never has. Not life-threatening, the seizures do, however, affect her daily functions in life. And there was the ever-present social factor: “I was sometimes getting misjudged by others as a kid,” she says.
The talented, and persistent, Heather is surrounded by caring men and women beyond her family circle. She performs in local musicals presented by Arms Wide Open (AWO), a wonderful organization that stages theatrical performances featuring cast members who have various types of disabilities.
She had heard about AWO through a close friend. “When my friend suggested that I join the program, I wasn’t in a good place with my disability,” she said. “But then I felt like I had a better handling of my disability…and I have loved AWO ever since.”
Her latest show with AWO was an interpretation of “Willy Wonka Jr.,” based on Roald Dahl’s book “Charlie and the Chocolate Factory” and the classic family movie “Willy Wonka and the Chocolate Factory.” She was cast as Charlie’s adoring and encouraging mom, Mrs. Bucket. The director of “Willy Wonka Jr.,” Chris Rubio, is the founder of AWO. He was inspired to work with people with special needs, in part because his brother has low-functioning autism. Rubio naturally empathizes with Heather and the rest of the ensemble.
Heather’s disabilities mean that she can only spend a certain amount of time doing group activities before needing to be private for a spell. The Atkinsons merely shift focus when necessary, and support Heather’s passion for privacy, different interests and creativity. They encourage her in many ways, and—among her accomplishments (shared by many a girl her age!)—is a romance. She met her boyfriend, Emiliano, two years ago.
Another great resource for Heather is a group called TMI. Cathena Ferrero is Division Manager of TMI. TMI—as in Too Much Information? Hardly! Just the opposite; TMI is Toward Maximum Independence, an innovative social services organization.
TMI assists people with developmental disabilities. In Heather’s case, she is supplied by Tailored Day Services, a program that “provides opportunities for increased integration and inclusion, as well as further opportunities, to develop or maintain employment/volunteer activities, and pursue post-secondary education,” according to its charter.
TMI helped Heather with career exploration and career development. “Heather wanted to find work and she hopes to start her own business,” Ferrero said. “She’s really into flowers, and through career exploration, she interviewed owners of floral shops.” As mentioned, in addition to a passion for acting, singing and dancing, she helps with her family’s thriving plumeria tree farm and Hawaiian-themed bag business from their home.
Heather herself now makes a difference in the lives of children who have special needs. She volunteered to read to classrooms in her school district. As a result, she reads on a regular basis, every Friday morning, to special-needs children.
Stacy remembers that “Heather had started making her world really small. She doesn’t deal well with noise, crowds and fluorescent lighting.” At one time, parents of autistic children had to “settle” for such restrictions. But thanks to the love, support, and understanding of family, friends, and programs like AWO and organizations like TMI, a new world is dawning for these children.
That new world is called Life.
An estimated one in six people are born with a developmental disability. Just like you, they are born with hopes, dreams, and the drive to contribute to society. Since 1981, Toward Maximum Independence (TMI) has transformed thousands of lives by providing assistance to children and adults with developmental disabilities, giving them the ability to realize their hopes and dreams.
We are advocates for the belief that disability does not mean inability. Independence and self-responsibility are fostered by respect for the individual’s autonomy and by empowering the individual to make informed decisions. It is important that everyone should have the opportunity to reach their potential competence with opportunities to perform functional and meaningful activities or work with support if needed to promote success.
All people we support experience full inclusion in their daily lives in all aspects of community life. We believe that the three cornerstones of a strong life foundation are: living as independently as possible, having the opportunity for real work for real pay, and providing children and young adults with caring family homes with personalized supports.
We strive for excellence and we are committed to providing our clients with the highest quality of services while working in an accessible manner to engage with all our stakeholders and leverage available community resources to benefit our clients.
Our Code of Ethics helps assure that all Board members, volunteers and staff act with honesty, integrity, and openness in all aspects of our work. In this way, we exercise responsible stewardship by maintaining effective governance and management practices. We generate adequate resources, manage resources effectively, support and recognize our volunteers, and appropriately support and compensate staff.
It is our culture that affords us a healthy working environment for all employees and volunteers. We celebrate the benefits gleaned from an organizational family that is productive and enjoys a pleasant and positive workplace.