My name is Joey and I have autism. Some people think everyone with autism must be stupid. I am here to prove them wrong. My quest is this: believe in us and life will get better.
Joey Lowenstein was born on a warm sunny day in October of 1996, in Boca Raton, Florida to Norman and Roberta Lowenstein. He was a typical, playful baby and absolutely adored by his parents. Even though language acquisition was delayed, he always knew how to get his needs met.
Joey developed normally, but at 2 years old, 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 a lot for everyone to absorb, because in 1999, very little was known about autism.
To really know Joey, you have to know his parents. They immediately sought out the best experts and therapists they could find up and down the East Coast. His mother Roberta went into treatment mode, learning how to do ABA therapy, along with Joey’s English nanny. Together they forged out, and instituted a 40 hour a week home program, until other professionals could be brought on board. Joey’s parents read everything, talked to everyone and hired the best speech, occupational, behavioral therapists they could find. Joey’s dad Norman was determined to find a cure, but eventually realized that none was available.
As more and more children were diagnosed with autism, Norman and Roberta quickly realized how many families didn’t have the resources that they had been able to leverage for Joey’s benefit. Too many families would not be able to help their children because of the extremely expensive treatment autism requires. From that point forward, the Lowensteins decided they would use their resources to fully take on the cause and make it possible for more families to enjoy treatment like Joey was receiving. The idea of a foundation was born at a later date. Read more about the JL Foundation here.
As Joey grew, his parents gave him the same opportunities that parents would give to typically developing kids. Gymnastics classes, soccer, swimming, bike riding and ultimately, even skiing lessons. He didn’t talk spontaneously, but eventually could repeat single words. He definitely liked sports and he excelled at all of them. These activities have continued throughout his life and currently, he is a basketball player, a runner, and an extreme black diamond snow boarder.
When it came to Joey’s education, his lack of speech was more of a challenge. Norman and Roberta knew Joey was very smart because of his athletic abilities and willingness to learn those skills. But his school district did not have a proper program geared for autistic children anywhere. Always on the frontline, his parents personally funded a legal battle against the school district to get them to offer early intervention plans geared toward autistic children. They had a small victory but decided to move to Texas where cutting edge treatments and therapies were being performed at private schools there. During this period of time, they also fought and won an unprecedented case against a large health insurance company in Federal Court in 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, once again it proved inadequate. So the Lowensteins supplemented Joey’s school program with a home program 25 hours per week. After a year or so they were back in Florida and, continuing to be unsatisfied with public schooling, Roberta began to have Joey home schooled. Joey started ABA therapy for 40 hours a week with initially his mother and an English nanny as Joey’s therapists, until other teachers could be brought on board. The home was literally turned into a school house and Roberta was the dean. Joey had several teachers and the physical, occupational and behavioral therapies continued. Joey was a hard worker, and a very happy child. He learned to swim, loved to fly in airplanes, and enjoyed travel. Joey’s dad Norman was totally behind Roberta the whole way. They were like the dynamic duo.
Sadly, and totally unexpectedly, Norman died in a plane crash late in 2003, when Joey was seven years old. It was a devastating time for everyone, but Roberta and Joey forged on, with Joey finishing out the school year in Florida.
Roberta and Joey 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 was placed in a special room with 1-2 other special needs kids, and socialized with typical peers during recreation and lunch. Roberta and Joey moved to Aspen where Joey thrived, not only in school but on the slopes too! Everyone in town knew Joey!
At 8 years old, Joey began to learn how to snowboard. At first, it was difficult for him, but he and his instructors persevered, and Joey has become 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. Eventually, Joey outgrew the school in Colorado, and once again Roberta had to seek out the best program for her son. In seeking out the best education for Joey, his mom researched a number of school placements. Joey briefly attended two programs, one in Ft.Lauderdale, the other in Denver, however, New York City won out.
They ended up in NYC where Joey was enrolled in a private school geared toward autism. Treatments were improving over time and Roberta was always aware of the latest treatments through research, and at every school Joey attended, she gave funding to have the teachers 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 RPM (“Rapid Prompting Method”) founded by Soma Mukhopadhyay, and suggested trying it with Joey. At the first opportunity at the end of August 2010, they did 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, it was discovered thru RPM therapy that Joey INDEED HAD A VOICE. Not only could he spell, he had things to say – 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, happiness. For most of us, the thought is literally unimaginable. Put yourself there for one hour and think how frustrated you would be. Joey had taught himself to spell at an 8th grade level and when asked how, he said by “CAREFUL OBSERVATION” (his words, on the letter board). He was listening and absorbing information the whole time, when no one knew it.
What is even more amazing about Joey is that as he embraces his ability to communicate, he feels that he was given the condition of autism because it is his destiny to help other people, children and adults alike – not only with RPM therapy but through being active and healthy. Joey feels this has helped him so much. Maybe it was a way to channel his frustration, maybe it was fun, maybe it was empowering, when all he heard people say is that he “couldn’t do it.” Maybe it was all of those things.
RPM therapy has taken Joey to new heights in his life and the lives of all who surround him 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 a way to not only make people understand Joey and his own condition but to reveal the unique gifts of the many who are affected by autism. Joey’s hope is that thru the Joey Lowenstein Foundation (“JL Foundation”), that he will be able to provide “ANSRS” 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 feels like he was given autism to help others. He is so much like his father, maybe they will be able to cure it after all.
We certainly can’t wait to find out.
Joey has boarded with Olympian Chris Klug on several occasions in Aspen during the past 2 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 in his words: “DONT CRY MOM, I WILL BE BRAVE”.