Joey Lowenstein was born on a warm, sunny day in October 1996 in Boca Raton, Florida. He was a typical, playful baby and his parents, Norman and Roberta Lowenstein, absolutely adored him. His language acquisition was delayed, but he otherwise developed normally until age 2, when he suddenly lost his verbal language communication skills and slipped into his own world. It was as if a door had slammed shut. Joey didn’t even respond when his name was called. Joey was diagnosed with autism at 2 1/2 years old. It was 1999 and very little was known about autism.
Joey’s parents immediately sought out the best experts and therapists they could find. Joey’s parents read everything, talked to everyone, and hired the best speech, occupational, and behavioral therapists they could find. Joey’s dad Norman was determined to find a cure, but eventually realized that none was available. Joey’s education became a priority. Norman and Roberta knew Joey was very smart because of his athletic abilities and strong desire and ability to learn. But his school district did not have a proper program for autistic children. Always on the frontline, his parents personally funded a legal battle against the school district to lobby for early intervention plans geared toward autistic children. They had a small victory, but decided to move to Texas, where private schools had cutting edge treatments and therapies for autistic students. During this period, they also fought and won an unprecedented case against a large health insurance company in Federal Court of Miami, paving the way for families to be compensated across the nation.
Upon returning to Florida, Joey was enrolled in a special needs program for his educational and socialization needs. However, it once again proved inadequate. So the Lowensteins supplemented Joey’s school program with a home program 25 hours per week. After about a year, they were back in Florida but continued to be unsatisfied with public schooling. So, his mother Roberta turned to home schooling. Roberta, along with Joey’s English nanny, learned how to do Applied Behavior Analysis (ABA) therapy. Together they created and instituted a 40-hour per week home program. Their home was turned into a schoolhouse and Roberta was the dean. Other professionals were eventually brought on board to help: Joey had several teachers as well as physical, occupational, and behavioral therapists.
Joey was a hard worker and a very happy child. He learned to swim, loved to fly in airplanes, and enjoyed travel. As Joey grew, his parents gave him the same opportunities that typically developing kids would have: gymnastics, soccer, swimming, bike riding and ultimately, even skiing lessons. He didn’t talk spontaneously, but eventually learned to repeat single words. He loved sports and excelled at all of them. Joey’s dad Norman was their biggest fan, supporting Joey and Roberta the whole way. Sadly, and totally unexpectedly, Norman died in a plane crash in late 2003, when Joey was seven years old. It was devastating, but Roberta and Joey forged on, with Joey finishing out the school year in Florida. Roberta and Joey then visited a public school in Aspen, Colorado that would allow Joey to be in the classroom with typical peers in their elementary school. In the middle school, he would be placed in a special room with 1-2 other special needs kids, and socialized with typical peers during recreation and lunch. They decided to give it a try. Roberta and Joey moved to Aspen and Joey thrived — not only in school but on the slopes too. Everyone in town knew Joey!
It was in Aspen that Joey learned how to snowboard. It was difficult for him at first, but he and his instructors persevered, and today, Joey is an accomplished black diamond snowboarder. He went on to climb up and snowboard down the Highlands Bowl, quite an achievement for a 12-year-old autistic boy. Since then, Joey has boarded with Olympian Chris Klug on several occasions during the past two years and recently boarded in Portillo, Chile. He has also boarded off-piste with his team. During that trip to Chile, he flew in a helicopter and, overcoming his fears, told his mom: “DONT CRY MOM, I WILL BE BRAVE.”
Joey eventually outgrew the school in Colorado, and once again Roberta had to seek out the best program for her son. Joey briefly attended two programs, one in Ft. Lauderdale and another in Denver, however, Joey eventually enrolled in a New York City private school geared toward autism. Treatments were improving over time and Roberta remained abreast of the latest treatments; she even personally funded all of Joey’s teachers to be trained in the latest methods and techniques. His mom didn’t know it at the time, but a miracle was about to unfold. Another mom mentioned a therapy called Rapid Prompting Method (RPM) founded by Soma Mukhopadhyay, and suggested trying it with Joey. Joey first tried it in August 2010 and the rest, as they say, is “history.”
Soma’s RPM therapy set Joey free! After so many years of his parents’ determination to teach and Joey’s determination to learn, RPM therapy gave Joey his voice. Not only could he spell but he could communicate complex ideas, and boy did he have things to say. Imagine living your life trapped with a perfect mind and no way to express your thoughts, opinions, pain, or happiness. For most of us, the thought is unimaginable. RPM revealed that Joey had taught himself to spell at an 8th grade level. When asked how, he said by “CAREFUL OBSERVATION” (his words, on the letter board). He was listening and absorbing information the whole time, but no one knew it.
What is even more amazing about Joey is that as he embraces his ability to communicate, he has come to realize that he was given the condition of autism because it is his destiny to help other people, children and adults alike, not only through RPM therapy but through fitness and health. Joey contributes so much of his happiness to these lifestyle choices. Maybe it started as way to channel his frustration, maybe it was for fun, or maybe it was empowering to prove the skeptics wrong through his success. Maybe it was all of those things.
RPM therapy has taken Joey, his friends, and his family to new heights by allowing him to reveal ideas and concepts that he previously could not adequately communicate. With this new communication bridge, Joey shared his vision: for people to understand him and his condition and to help others affected by autism to reveal their unique gifts. Joey’s hope is that through the Joey Lowenstein Foundation, that he will be able to provide ANSRS (hyperlink) to the many people who have autism.
Joey’s is a story of great hope and promise for the future. It is a story of giving back. Joey has already touched the lives of so many people. When you meet him, you can’t help but have respect for him, and he definitely does not want pity. He is so much like his father — maybe they will find a cure after all.
We certainly can’t wait to find out.