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The sudden and dramatic change of a boy at age 18 months set into motion a life alteration for a mother whose days are now dedicated to advocacy for those on the autism spectrum.
Dan Smith
Amy Trail says her son, Noah, was a typically developing child until the age of 18 months.
“He went from a child who sang ‘Rock-a-bye-Baby’ with me when I rocked him to sleep to a child who would not let me touch him, who appeared he could not hear me, who could not look at me nor communicate with me,” she says of her son’s severe regression, now more than 10 years ago. “He lost all developmental skills in communication, cognitive, social, emotional, behavioral, fine motor and some gross motor—back to zero- to three-months’ development.”
Trail’s life changed immediately and deeply. At 21 months, her son was diagnosed with Autism: Catastrophic Neurological Loss. And the therapy he needed was either unavailable or far beyond the family’s means.
“Noah was already in early intervention when he received his first diagnosis,” she says, “and had been receiving speech therapy and occupational therapy in the home.” Her research had revealed that he needed much more than that. Applied Behavior Analysis (ABA) Therapy was the answer.
But when she contacted her local school district—Franklin County Public Schools—she was told: “We don’t do that here.”
“Scientific peer reviewed research showed that if he ever had a chance to live a productive life he needed intensive ABA Therapy in the amount of 30-40 hours a week, due to the nature and severity of his autism,” she says. “At that time in 2007 it was about $30,000 per year and I knew we could not afford that out of pocket.”
She began receiving training to provide help to her son the best she could.
“I would provide therapy all day long and his father was working to keep a roof over our heads and feed us. During the day and at night we both took turns reading Individuals with Disabilities Education Improvement Act (IDEA) of 2004 looking to learn how to use the law to help our child.”
The additional steps and tribulations over the years since include Noah becoming the first child in his district to receive ABA therapy, Trail and her son moving away from the rest of the family to an appartment to enter the Blue Ridge Autism and Achievement Center (BRAAC), and much more.
But the results have been significant.
“Noah is now a different child,” his mother says. “He is a fabulous non-verbal child who communicates with sign language, a communication device, and through just about every way he can get his point across. He is reading, doing addition, telling time and counting money. He has learned how to grocery shop for himself with a list and is preparing his own lunches at school.”
But Trail’s efforts—helping build a life for her son that is “100 percent better because he is dialed into our world now due to having this high level and intensity of services”—did not stop with her efforts for Noah. Today, she lives a life built around helping not only her own son, but also others on the autism spectrum.
She does subcontract work for Advocating 4 Kids, a nonprofit organization providing advocacy services in the public schools, and is also a board memeber of the group.
She also has her own group, FACES (Families of Autism Community Enrichment Services) where she provides many services including training for parents and organizations including some doctors at Carilion.
“FACES is currently setting up an office here in Roanoke,” she says, “where it will have a parent resource center and a training center, including advocacy services in the school and the community.”
Amy Trail encourages contact from any who might benefit from her help: FACES.amytrail@gmail.com
Autismspeaks.org defines the disorder as “a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. Autism Spectrum Disorders (ASD) are characterized by social-interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors.”
Trail emphasizes that there are multiple levels of autism, with her own son being severe, but others functioning at a much higher levels, to the point of being able to attend public schools.
Angie Leonard is founder and CEO of the recently expanded BRAAC, a 34,000-square-foot, 80-employee facility that accommodates 70 people (pre-school to 22 years old), with a wide range of learning abilities.
Leonard says that students “get what they need, from toilet training, to eating, social skills and for all older ones vocational education. There is no one size that fits all.” And there is an analysis of student skills every day. Some, says Leonard, “transition back to [public] school. My son spent half a day here and half a day at Lord Botetourt High School.” She smiles. “He wanted access to football.”
Some of the BRAAC students even make it to college, says Leonard. “Right now, we have students at Virginia Western [Community College] and Radford [University].”
The cost of BRAAC and similar facilities is borne by the Community Services Act through the child’s IEP (Individual Education Plan), some health insurance (covering children until their 12th birthday) and private funds. When children are labeled “developmentally delayed,” however, public funding can be hard to come by.
Love Kingsbury says her son’s autism doesn’t affect his grades, “but it can be scary for a child to be around higher functioning” students. Rollie Kingsbury attends Roanoke County schools.
No matter the level, autism awareness and understanding have come a long way.
“Those with autism used to be labeled ‘mentally retarded,’” says Leonard.
Trail says that “when I first started looking for alternatives to public school, there was nothing in the phone book under ‘autism.’ I made it my mission” to find resources. “It is just in a mom. It is our journey. We were born to it. We are not just parents: we became advocates.”
She says she and Kingsbury “have about 30 clients [in her advocacy group] which we have been retained to advocate for in the school by their parents. These kiddos are a vast array of autism with many different issues within the schools, most of which start with lack of ‘Child Find,’ which is when the school is supposed to comprehensively evaluate in all areas of development to be able to provide goals and services to meet their needs.”
“I can’t un-see” autism, says Love Kingsbury. “When I see struggle—for anybody’s child—I have to get services; have to help others. We want these children to be as independent as possible. Our children should not have lower expectations because of autism.”
“It takes us to do it,” says Amy Trail. “The squeaky wheel is going to get the attention. These kids are smart.”
And so are their mothers.
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