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Stephanie Sanford: “Our ultimate goal is that we can die and [Bennett] will be fine.” Photo by Lee Chastain.

In many ways, Bennett Sanford is a typical 11-year-old boy. He enjoys swimming in his backyard pool, loves animals, and plays Minecraft on his iPad with the same intensity as a Russian chess champion. At his home on a recent weekday evening, Sanford was quick to smile, hugged his mother, Stephanie, and responded verbally to a reporter. While those small tokens of affection may not seem like much, they have taken him years of therapy and treatment to achieve.

When he was just a year old, Bennett stopped answering to his name and making eye contact. He had only begun to speak, but even simple words like “mama” and “dada” disappeared from his developing vocabulary. They were replaced by a constant noise that sounded like a motorcycle. He flapped his arms when he became frustrated. And he suffered burning, painful diarrhea and constant vomiting.

Bennett was diagnosed with autism, a developmental disorder that affects more than 2 million people in the country. His pediatrician wasn’t optimistic about his future, Stephanie said.

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“The physician who diagnosed my child, the first thing he told me is that my kid is going to end up in an institution,” she said. “He’ll never talk. They tell you there is nothing you can do.”

Stephanie and her husband, Kevin, didn’t accept their pediatrician’s grim diagnosis. The two mined the internet for guidance and came across Generation Rescue, a California-based nonprofit that provides information and financial support to families whose children have been diagnosed with the disorder.

Many children like Bennett suffer from painful digestive issues that make it impossible for them to concentrate on relearning basic language and social skills. Generation Rescue promotes biomedical treatments such as vitamin supplements to deal with those stomach issues. The organization recommends certain diets, such as the gluten-free, casein-free diet, that have been proven to help with those gastrointestinal problems. The nonprofit also helps connect parents with physicians trained in the latest alternative, holistic treatments of autism. The organization hosts an annual three-day conference in Dallas that allows parents to meet other parents of autistic children and doctors who specialize in the disorder.

Zack Peter, a spokesman for the charity, said that Generation Rescue believes that autism is treatable, and controlling the myriad digestive issues is the first step to recovery.

“A lot of people think of autism as something that just affects the brain, but we like to think of it as a whole body disorder,” he said. “When you start to repair some parts of the body, the child tends to get better.”

“A lot of these kids can’t sleep through the night,” he said. “They have stomach issues. When you have all of this going on, you can’t focus. It creates a wall between you and the outside world. I think that’s why so many parents will describe it as their kid is ‘in their own world.’ ”

Bennett was one of those kids in his own world. Before his current regimen of diet and therapy, Stephanie said, keeping up with her son was exhausting.

“He would dart,” she said. “We had locks on every door. We had people in the grocery store who stared at us because our kid was acting out, even though he was just having a bad day because I opened up a lollipop wrong.”

Bennett started taking supplements and began following the special diet when he was 2  –– he is currently on the even more restrictive, meat-heavy paleo diet. Now he takes about a dozen supplements twice every day, ranging in cost from $5 to $25 a bottle.

Stephanie, who has a younger son, Grant, who is not on the spectrum, said the change in eating habits and the vitamins had an immediate effect, though she pointed out that the recovery process is slow and challenging.

“It was amazing,” she said. “His attention was clear, eye contact came back, he seemed more comfortable,” in terms of his intestinal issues.

Generation Rescue is one of the best-known autism-focused nonprofits thanks in part to its board president, actress and mother of an autistic son, Jenny McCarthy. She mentions the charity in her books, Louder Than Words and Mother Warriors, which has prompted many parents to access the nonprofit’s website and apply for the grants.

Although Stephanie has used the website as a resource, her family didn’t apply for a grant. She’s lucky enough to have good insurance and a husband with a stable job. Even for families who receive help, treating the kid’s stomach issues is just scratching the surface of dealing with the many issues related to autism. Stephanie said Bennett receives ongoing Applied Behavioral Analysis therapy for speech and behavior and has received infrared sauna therapy, hyperbaric oxygen therapy, and more. For many, the financial strain is a crushing burden.

“I do know parents who struggle,” Stephanie said. “They have to work two jobs. They have to move into a smaller house.”

Peter said Generation Rescue distributes 100 grants a year, and recipients of the money see an average improvement of 32 percent in all areas –– including speech, communication, socialization, and cognitive awareness –– on a metric called the Autism Evaluation Checklist, a 0-to -180-scale test that measures where a kid sits on the spectrum. The lower the score, the better. When the Sanfords first started measuring Bennett’s score three years ago, he was at 58. Now, thanks to a combination of diet and therapy, he’s at a 22. The goal, Stephanie said, is zero, which would mean that her son would be removed from the spectrum altogether.

“When they hit that zero to 10, there aren’t enough markers for them to be considered on the spectrum,” she said. “But they will still always have quirks. They’ll always be the odd kid in class. They’ll be the kid who wasn’t special needs but really didn’t know how to talk to people. I would be totally fine with him being the odd kid in class.”

Stephanie volunteers with Generation Rescue as a mentor to families with a newly diagnosed child or anyone who needs help. She also runs the nonprofit’s Pinterest account, and compiles recipes, articles, and other helpful bits of information.

“Our ultimate goal is that we can die and [Bennett] will be fine living in an apartment by himself, possibly get married, and be a functioning adult,” she said.

 

Generation Rescue’s Autism Education Summit is Sep 30-Oct 2 at the InterContinental Dallas Hotel. Tickets are $89 for all three days.

1 COMMENT

  1. Wonderful story – kudos Sanford family and Generation Rescue!

    While “controversy” may surround the causation issue with autism, there is no doubt that it’s beneficial to improve the food and nutrition that children with ASD receive. Gut issues, food intolerances/aversions, nutrient deficiencies, eating issues, etc….all point to taking charge of diet. Fifty years of science and common sense supports nourishing this hope!

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