Loren Evans (left) grasps the Torah during his bar mitzvah at Breed Street Shul. Photos by Lynn Levitt.

A bar mitzvah amid tears — and kvelling


This was a day that Loren Evans’ family thought they would never see.

In a heartwarming ceremony featuring an unlikely front man, Loren — a high-functioning autistic 18-year-old — celebrated his bar mitzvah at a landmark Los Angeles synagogue.

The young computer whiz also suffers from selective mutism, an anxiety disorder which makes it nearly impossible for him to speak to anyone except family members, let alone headline an oration-heavy bar mitzvah.

With the help of a volunteer leader from Camp Chesed, a camp for young people with special needs, and a Chabad rabbi, Loren stood on the bimah and participated in the ceremony to his fullest ability.

“Loren was glowing brighter than I’ve seen him glow in a very long time,” his mother, Gilda, said. “It brought him great joy, meaning and fulfillment. I think he smiled more than I’ve ever seen him smile.”

The bar mitzvah took place on Dec. 25, Christmas Day as well as the first day of Chanukah, at the Breed Street Shul in Boyle Heights, one of the city’s most historic houses of worship. About two dozen or so friends and relatives attended.

Loren, who lives with his family in Tarzana, currently attends Pierce College and has an affinity for electronics and computers, which his mother says he hopes to parlay into a future in the gaming world.

However, Loren’s family, longtime members of Stephen Wise Temple, previously had doubted he would be able to follow in the footsteps of his older brother and sister in the bar and bat mitzvah tradition.

“I had always assumed Loren’s personal challenges would prohibit it,” his mother said. “We weren’t sure it was feasible.”

camp-jaquesJacques Hay, a man the Evans family knew well, had other plans, offering to make all the bar mitzvah arrangements.

Hay, a short, bubbly man with gray stubble, owns a store in Northridge that sells awards, plaques and trophies. For the past 21 years, he has run Camp Chesed, a Reseda-based, two-week-long summer camp for Jewish children with special needs. The camp is free for all campers, and its operations rely on private donations Hay works to obtain.

Loren attended Camp Chesed for the past five summers. Several Camp Chesed alumni and their families were present for his bar mitzvah.

A few weeks before the big day, Hay called Gilda to invite the family to a Chanukah party for Camp Chesed campers, counselors, alumni and families. During that same call, he proposed giving Loren a bar mitzvah.

“When he said to me it’s something Loren deserves, the tears began to flow. I asked Loren and he didn’t hesitate,” Gilda Evans recalled.

Hay met with Loren once before the bar mitzvah for a 1 1/2-hour tutoring session about the Chanukah haftarah portion that would be read on his special day. They went over the prayers and what Loren’s role would be.

At the ceremony, Loren stood smiling next to Hay’s friend Rabbi Yitzchak Sapochkinsky of Chabad of Westlake Village — who made the more than 50-mile trip to officiate.  Loren carried the Torah in the procession around the chapel. He then followed and pointed at the text of his haftarah portion while the rabbi sang. Sapochkinsky gave voice to the voiceless and the ceremony reduced many to tears.

Gilda; Loren’s older brother, Louis, and grandparents Ernest and Ida Braunstein were in attendance. His older sister, Leigh, watched via Facetime from Boston, where she works for AmeriCorps.

From left: Family members Louis Evans, Ernest Braunstein, Gilda Evans, Loren Evans and Ida Braunstein gather on the bimah at the Boyle Heights synagogue.

From left: Family members Louis Evans, Ernest Braunstein, Gilda Evans, Loren Evans and Ida Braunstein gather on the bimah at the Boyle Heights synagogue.

Loren’s 92-year-old grandfather joined the man of the hour on the bimah. Behind them, an ornate mural depicted lit chanukiyahs and commandment tablets, a permanent fixture in the sanctuary, which recalls the heritage of the 101-year-old synagogue. A Holocaust survivor who has macular degeneration, rendering him blind, Ernest Braunstein recited an aliyah from memory. His 88-year-old wife watched alongside Gilda in the women’s seating section.

Louis beamed with pride as he aimed his cellphone at the altar so his sister Leigh could watch from the East Coast.

“I’m just happy he got to have a bar mitzvah like my little sister and I did,” Louis said. “Now it’s all three of us. It’s so great for my grandfather. All the culture, tradition and heritage is really important to him. He, along with the rest of the family, really loved seeing him up there.”

Gilda was quick to credit Hay, saying, “It was all due to the generosity of [Jacques], who is one of the most amazing people I’ve met in my life.”

During the summer, Hay’s Camp Chesed hosts about 40 campers of all ages. For every camper, there are two to three counselors, usually volunteer high school and college students. Hay’s campers span the gamut of special needs, although he estimates more than 80 percent are on the autism spectrum.

In recent years, Camp Chesed has treated campers to trips to Disneyland and Universal Studios, as well as flights over the greater Los Angeles area in two-seater airplanes.

At the ceremony, Hay was modest and shrugged off the amount of time and energy he pours into performing good deeds.

“This is what Camp Chesed does,” he said. “It’s a very special camp.”

Hay told the Journal he has had seven campers bar mitzvah’d under his watch. Four years ago, he helped coordinate a Breed Street Shul bar mitzvah of another Camp Chesed alumnus, a young man with a brain tumor.

“Eighty thousand Jews used to live within a five-mile radius of this place,” he said of the synagogue. “It’s the oldest and maybe most respected synagogue in Los Angeles. Coming back here is like going back to the future.”

Once the hub of the city’s Los Angeles Jewish community until many Jews migrated to West Los Angeles and the San Fernando Valley after World War II, the Breed Street Shul later fell into disrepair and was vandalized. An ambitious restoration project that includes seismic retrofitting and repainting is under way. The large, iconic Byzantine-style sanctuary remains closed for that work. The smaller chapel to the rear, where Loren’s bar mitzvah was held, is now used mainly as a community center serving the largely Latino population of Boyle Heights.

Founding and board president of the Breed Street Shul Project Stephen Sass, who was present for the bar mitzvah, has overseen the restoration for the past 16 years. Sass said the shul hosts a Jewish event such as Loren’s bar mitzvah four or five times a year.

Gilda, who knew little of the shul’s history before Hay filled her in, deemed it a perfect setting for the occasion.

“How appropriate is that? It’s amazing to have a young man overcome seemingly impossible odds and accomplish this wonderful mitzvah in a place that also overcame impossible odds to be restored as the place of worship it is today,” she said.

Gilda went on to say that she hopes more people with special needs draw motivation from what Loren was able to do.

“I hope this will serve as an inspiration to other young people who have challenges, obstacles they perceive too difficult to overcome, and who might be able to accomplish the same thing. I hope this will inspire them to take another look at it, adopt another viewpoint and perhaps find a way to have the same wonderful experience.”

After the bar mitzvah and a bagel brunch, 450 guests attended a Chanukah party for Camp Chesed alumni and families on an Encino estate, home to a prominent camp donor. Loren was bestowed with the honor of lighting the menorah welcoming the second night of Chanukah.

Untangling autism


There’s a popular saying in the autism community: If you’ve seen one person with autism, you’ve seen one person with autism. That is, each child manifests the condition uniquely. In fact, autism — also referred to as autism spectrum disorder — encompasses a group of complex conditions. 

Ilan Dinstein, an autism researcher at Ben-Gurion University of the Negev (BGU), believes that just as there are different ways of expressing autism, there are different biological mechanisms behind these variations. Identifying these mechanisms, he hopes, could facilitate development of treatments targeted to specific variations. 

In BGU’s newly established neurophysiological autism lab, Dinstein and his colleagues are looking at brain function and brain structure to identify differences associated with autism, and to rule out those that don’t play a role. Their data come from functional magnetic resonance imaging, which measures brain activity; electroencephalograms (EEG), which track brain wave patterns; tracking eye movements; and motion capture to study motor control. They are correlating these results with other patient information, such as genetic profile and behavior, looking at a multiplicity of variables rather than a single one. 

“I’m totally convinced that autism is multiple disorders with different types of biology,” Dinstein said, speaking in Los Angeles in February at a program for the American Associates of BGU. “The idea is to use MRI and EEG to enable us to identify specific subgroups with the goal of having different treatments for each subgroup.”

Autism disorders are characterized by difficulties with social communication and interaction, as well as the presence of repetitive behaviors. About 1 in 68 American children are identified as being on the autism spectrum, according to the U.S. Centers for Disease Control and Prevention. Children may be diagnosed with autism as young as 18 to 24 months, although many are identified later. The diagnosis is based on behavior and development — there is no medical test for autism. 

“Our goal is to understand what happens in the brain early on in development — during the first four or five years of life,” said Dinstein, who has a bachelor’s degree in biology from Tel Aviv University and a doctorate in neuroscience from New York University.

Such knowledge, he said, could eventually lead to the development of ways to identify autism, perhaps even before behavioral symptoms start. He believes that using brain changes rather than behavior to diagnose autism would enable earlier diagnosis and more targeted interventions.

Eric Courchesne, co-director of the UC San Diego Autism Center of Excellence, said Dinstein’s team — as well as his own — are “among the small pioneering group doing research on the early biomarkers of autism.” 

“There are lots of people doing research on older children, adolescents and adults with autism, and that’s important,” Courchesne told the Journal. “But it’s a challenge to see during the first one to two years of life, what’s going on in the brain that causes the symptoms of autism.”

Courchesne and his wife, center co-director Karen Pierce, invited Dinstein to join their lab, but Dinstein chose to start his own at BGU. Still, he and the couple have shared data and experiments and have published papers together. 

So far, their research has not identified meaningful differences in brain anatomy between children who have autism and those who don’t, Dinstein said. But it does point to differences in brain function. 

Toddlers with autism show less synchronization, or symmetry, in brain activity between the two hemispheres of the brain. They also seem to have “noisier” or more variable brain signals in response to visual, auditory and touch stimuli. In babies with autism, eye movements appear to be jerkier and less accurate.

Dinstein said most autism research focuses on a single factor rather than identifying a constellation of factors. “There’s very little work that looks at relationships across variables,” he said. “You need data for a large number of children to do this.”

To gather that data, he has joined six colleagues — a pediatric psychiatrist, epidemiologist, geneticist, computer scientist, molecular biologist and a physician. The team has begun creating a regional autism database for the Middle East to collect and eventually correlate multiple types of information for each child. It includes as much information as possible about each patient’s genetic profile, medical history and behavior measures, as well as biological measures such as MRI, EEG and eye-tracking data. The effort, which started in January 2015, collected data from about 150 children last year.

Gathering such a diverse constellation of information is a formidable task, but Dinstein and his colleagues have unique advantages because of BGU’s proximity to and relationship with the Negev’s Soroka Medical Center. Not only does the medical center sit across the street from the university, it also is the only hospital in Southern Israel. Ninety percent of children diagnosed with autism at Soroka also were born there.

This makes it possible for the team to collect data that would otherwise be difficult to obtain. For example, BGU researchers have access to information such as birth weight, gestational age and mother’s age at delivery. Because the majority of children will receive clinical care at Soroka over a long period, their development can be tracked over time. Israel’s centralized health care system — there are only four health plans in the country — also makes it easier to obtain data. 

In addition, the Negev is home to the nation’s Bedouin population, which engages in interfamilial marriage. Twelve of the children in the database are children of first cousins. “First cousins have very similar genetics, so it’s a lot easier to identify genetic abnormalities in their children,” he said.

Dinstein acknowledged that building the database will take time. 

“It will take several years to get this going,” he said. “But we don’t have to wait. We are starting with the pieces of information we have now to … look for correlations and see whether there are specific subgroups of kids with autism.

“This is a work in progress,” he continued. “I’m in this for the long haul.”

Deciphering satellite photos, soldiers on autism spectrum take on key roles in IDF


Sitting in front of a computer at the center of Israel’s largest army base, a soldier stares at the screen, moving pixel by pixel over a satellite photograph, picking out details and finding patterns.

A few years ago N.S., who has autism, thought the Israel Defense Forces wouldn’t take him. N.S., who like other soldiers could not give his name due to IDF protocol, spent his childhood in mainstream classroom settings, where he had focused on studying film and Arabic, but expected to miss out on being drafted — a mandatory rite of passage for most Israeli 18-year-olds.

Now, more than a year into his army service, N.S. is a colonel who spends eight hours a day doing what few other soldiers can: using his exceptional attention to detail and intense focus to analyze visual data ahead of missions. Soldiers with autism can excel at this work because they are often adept at detecting patterns and maintaining focus for long periods of time.

“It gave me the opportunity to go into the army in a significant position where I feel that I’m contributing,” he said. “I’m really swamped. I’m a perfectionist. I want everything to be perfect.”

soldiers2Roim Rachok helps people with autism integrate into the IDF and enables them to serve in key positions. Photo courtesy of the IDF

N.S. is among some 50 soldiers and trainees in Roim Rachok, Hebrew for Seeing Far, a program aimed at drafting the one in 100 Israeli children diagnosed with autism, according to statistics from the Israeli Society for Autistic Chidren. Based in the IDF’s Intelligence Unit 9900, which maps and analyzes visual data, the soldiers of Roim Rachok decipher aerial reconnaissance photos to provide information to soldiers ahead of combat missions. Other tracks train candidates to be army electricians, who deal with devices like night vision goggles, or optics technicians, who work with binoculars.

“There’s an agenda to show people on the spectrum have abilities and can do things,” said T.V., a former Defense Ministry official who co-founded Roim Rachok in 2012. “A big part [of the work] is to notice changes and a certain routine repetition.”

Autism diagnoses are rising in Israel. According to the Israeli Society for Autistic Children, about 10 times more Israeli children have autism as do adults. In the past, T.V. said, these children at 18 would enter the IDF and be given menial, frustrating jobs.

Participants in Roim Rachok attend a three-month course at the Ono Academic College near Tel Aviv, where they receive training for their army service and an introduction to army life. Along with photo analysis or optics, trainees learn about following orders, staying on schedule and working with a team.

Revital is the mother of a Roim Rachok soldier who is an American Civil War buff.

“He’s a kid with really extraordinary intelligence and abilities, but social understanding and obeying social rules have always been harder,” she said.  “He’s come a long way. This fits him like a glove.”

After three additional months of training on base, participants are drafted and placed within Unit 9900 — sometimes as the only soldier on the team with autism. Before they arrive, their fellow soldiers and commanders receive training on working with people with autism, and every team meets weekly with a counselor to discuss the group dynamic.

N.C., another soldier with autism, said he goes out to eat regularly with his fellow soldiers. D., a second lieutenant who commands another Roim Rachok soldier, said her team usually works smoothly. But when D. first replaced the team’s previous commander, the change challenged that soldier and caused his work to decline.

“He was very close to his previous commander,” D. said. “It was very hard for him, so he regressed. I had stressed him out, so he was less concentrated, not sure who to take commands from.”

After their discharge, Roim Rachok soldiers will face new challenges in finding jobs that suit their abilities. But army service will have given soldiers with autism experience in overcoming obstacles like coping with a changing environment or strategizing to complete a complex assignment.

“The soft skills people learn in their service are no less important than the profession itself,” said Benjamin Hazmi, academic director at Beit Issie Shapiro, an Israeli disability activism organization. “The army is people’s first encounter with authority, with a schedule.”

N.S., the soldier from Roim Rachok, says he wants to be a film editor after the army. In the meantime, he said he feels privileged to be a part of what most Israelis his age consider an obligation.

“The day I enlisted, I got very excited,” N.S. said. “I was really like, I’m an inseparable part of Israeli society.”

Ben Schwartzman: Giving autistic kids a shot at a team sport


In early 2014, UCLA post-graduate education student Ben Schwartzman and his classmate and friend John Daniel were staring at their computer screens and robotically crunching numbers on Microsoft Excel when they both decided they needed a change.
 
“We were just looking at data on our computers and hating our lives,” Schwartzman said, laughing. “We were like, ‘We should do something fun.’ ”
 
Schwartzman, who’s pursuing a doctorate that will prepare him for a career working with autistic children, wanted to funnel his training and passion into action.
 
“Why don’t we just make a basketball league? That’d be so fun,” Schwartzman recalls saying to Daniel. 
 
One year later, Schwartzman and Daniel are preparing for their second season of High Five Basketball, a summer youth basketball league for children and teens on the autism spectrum. Open to ages 6 to 15, High Five Basketball offers autistic kids three things that everyone can use more of but that may be harder for some autistic children to find — friendships, physical exercise and a sense of belonging.
 
Last summer, High Five Basketball ran on Sundays from July 13 to Aug. 31 at Crossroads School in Santa Monica and Crespi Carmelite High School in Encino. Fifty-five kids signed up (Schwartzman collected names at an annual autism walk at the Rose Bowl last April), and High Five Basketball has received some outside financial support that allows Schwartzman, Daniel and the two other staffers to keep enrollment costs low — only $50 for the upcoming season.
 
Empower Sports, a 501(c)3 that creates sports leagues for children with special needs and kids living in poverty, agreed to bring High Five Basketball under its insurance plan — at no cost to High Five Basketball. A uniform manufacturer in Ohio gave Schwartzman a discount. And Jewcer, a crowd-funding platform that helps turn ideas into projects that can benefit the Jewish community, awarded High Five Basketball a $7,500 grant, which will go a long way toward funding the group’s main costs — gym fees and jerseys.
 
Schwartzman said he hopes the upcoming season will begin in May, but that also revolves around his and Daniel’s academic schedules (they are still full-time students). Schwartzman isn’t sure what his role will be with High Five Basketball after he graduates — he said there are many other projects he hopes to work on. But as an avid basketball fan (Lakers) and a recreational player, the opportunity to play and teach the game he loves to the people he wants to help has been a treasure.
 
“The actual game days were awesome,” Schwartzman said, adding that wins and losses aren’t counted, and the performance on the court is not taken as seriously as it may be in typical youth sports leagues. 
 
For Schwartzman, a career in autism has a very personal angle. His older brother, Joey, was diagnosed with autism in the late 1990s (the Journal did a story on him in 2001 titled “Torah Lover Beats Odds”), which prompted Ben to take an introductory course on autism when he was an undergraduate at UC Santa Barbara. That, Schwartzman said, is what started him thinking that a career in the autism field could be his path.
 
Schwartzman said that giving autistic kids a chance for rigorous physical exercise is known to help them improve executive functioning (which includes reasoning, problem solving and planning) — things that are often difficult for people without autism, and seemingly insurmountable for many with. He hopes the league also will help the kids become more involved in sports games during recess at school.
 
“A lot of the parents come up to me and say, ‘I had no idea that he could play basketball. I wouldn’t have known unless you guys did this league,’ ” Schwartzman said. 

Autism musical sells out


Normally, a two-day run is nothing to boast about — but no one who saw the new musical “A Chorus Line of Another Kind” at the Highways Performance space in Santa Monica would say it was anything but a resounding success.

Both “A Chorus Line of Another Kind” and “On Our Own,” which played May 5-7, were written and performed by young people with autism. They wrote the lyrics for the poignant songs, which they sang in front of sold-out audiences.

The plays were produced by the Vista Inspire Program of Vista Del Mar Child and Family Services. The program developed out of Elaine Hall’s The Miracle Project, founded in 2004 to enable children and teens with autism and other special needs to express themselves through music, dance, acting, story and writing.  The arts program was documented in the HBO double Emmy Award-winning documentary “Autism: The Musical.”

At these performances, Hall served as creative director, joining forces with producer Naomi Solomon, director Jason Weissbrod, music director Karen Howard, and composer and accompanist Taylor Kinney.

The stars were the dozens of children and adolescents with autism who lent their talents and hearts to the songs. One participant, Ezra Fields-Meyer, even provided the artwork for the programs and T-shirts.

“A Chorus Line of Another Kind”

“You are beautiful/You are wise/You are beautiful/And this is no surprise,” sang Dashiell Chandler, a boy who otherwise does not speak, but who was able to perform his own stirring composition.

Joshua Erenmark sang his composition, “Disneyland,” which may prove to be the theme park’s single best marketing tool ever.

And teenager Myles Keys wrote and sang “Be the Change,” which turned into the evening’s anthem:

“Be, be the change/The change you want to be/Be be the change/Create your reality.”

Joining the actors were Vista Inspired Teen volunteers, who help their peers prepare and take part in the performance itself. This year, volunteer Sarah Popelka was honored with the Vista “Inspired Teen” Award.

For more information and a slideshow of the performance, visit vistadelmar.org.

The Mensch List: Two-person army for their autistic son


Just try asking Connie and Harvey Lapin to recap 44 years as parent activists in the world of autism. In hyperactive tag-team, the couple bursts forth with stories and ideas, only to interrupt themselves and one another with still more anecdotes, ideas and accomplishments.

In the end, through laughter and tears, they manage to produce a coherent story of the tireless chutzpah, visionary courage and what they call serendipity, but is probably more about persistence, that helped them change the landscape, locally and nationally, for people with autism.

Harvey, 75, and Connie, 73, both grew up in Detroit. The second of their three sons, Shawn, was born in 1968 and was diagnosed with autism in 1970. Shawn is mostly nonverbal, and when he was younger was prone to violent and self-destructive behavior. He now lives in his own apartment with 24-hour help.

In 1970, there were no services for Shawn, and autism was misunderstood as childhood schizophrenia, often blamed on a frigid mother (Connie melts with warmth), and was treated with what today would be called abuse. The Lapins were told Shawn was incapable of feeling love or attachment and that the state had no obligation to educate him.

The Lapins had no intention of standing for any of that.

Story continues after the video.

But growth is inevitable: The number of adults with developmental disabilities, especially autism, is expected to increase dramatically over the next several years. And they have been raised to believe that a disability is not an obstacle.

“If you stay focused and you believe in yourself, you can do things,” said Emily, a 15-year-old on the autism spectrum, who participates in a b’nai mitzvah class at Vista Del Mar’s Nes Gadol program. “That is how I can accomplish things in life. I would like to go to college someday and have a decent life. Just a normal, happy life.” (Emily’s last name has been left out because she’s a minor.)

Banayan is already living that life.

“I am an independent woman here,” she says, sitting on her zebra-striped bedspread, a bright pink pillow in her lap. “I love the way I live.”

The Westwood crowd is high-functioning, with a variety of disabilities — autism, Down syndrome, cerebral palsy or other related developmental disabilities. ” title=”Jewish Federations of North America as Jewish Disabilities Awareness Month” target=”_blank”>Jewish Federations of North America as Jewish Disabilities Awareness Month. The Jewish Federation of Greater Los Angeles, in collaboration with about a dozen independent and synagogue-based programs, crafted a comprehensive calendar of events and a resource guide for its ” title=”whose reality is real” target=”_blank”>Whose reality is real?


Beyond labels, raising autistic son yields treasure


Jews and people with autism have a lot in common, if you ask Ezra Fields-Meyer.

As an autistic young man, he knows he has a good memory and likes to repeat things. As a Jew, he’s noticed similar qualities, which he pointed out during his bar mitzvah speech a few years ago.

“We repeat Shabbat every week. And we sing the same songs, like ‘Shalom Aleichem’ and ‘Adon Olam’ and the Kiddush. And we also have holidays that help us remember things that happened thousands of years ago,” he said.

This story is one of many related by the youth’s father, Tom Fields-Meyer, in the book “Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son” (Penguin: $15). The book was named a 2011 National Jewish Book Award Finalist in the category “Biography, Autobiography, Memoir” earlier this month.

“Following Ezra” chronicles a father-son relationship as it evolved over 10 years, and how Ezra grew from an isolated 3-year-old to someone who started making connections — unexpected as they might be — to the world around him.

“I wanted to write about what it’s like to live with someone like this and how I gradually came to appreciate my son and celebrate him and find all these really incredible qualities that he had,” said Tom, 49, a former senior writer for People magazine who lives in the Pico-Robertson area.

This was different from the kind of books on special-needs children that were available when Ezra was young, he said.

“I found all these other books that were either really clinical or they made it look like having a child with special needs or a child with autism was just sort of the end of your life and was going to be this horrible experience,” said Tom, who will speak about the book Feb. 6 at American Jewish University (AJU) and Feb. 21 at Vista Del Mar.

At first, Tom and his wife, Shawn, a rabbi at Milken Community High School and instructor at AJU, were confused and challenged by Ezra’s asocial behavior. The boy didn’t engage in conversation or interact with other children, preferring to line up plastic dinosaur toys in symmetrical patterns.

“My first instinct as a parent was to try to find ways to solve this problem and get him the help that he needed,” Tom said. “I figured if we found the right specialist or the right therapy for him or … if I did the right research, then we could figure out what we needed and sort of get on with our lives.”

But when a therapist suggested he take the time to “grieve for the child [Ezra] didn’t turn out to be,” Tom thought about things and realized that he saw the situation differently.

“It was really my instinct to just get to know him really well and see how he developed and sort of celebrate the child that I had, and help him to be the best version of himself that he could be,” he said.

There turned out to be plenty about his son worth celebrating. Now 16 and somewhere in the middle of the autism spectrum, Ezra has developed a number of passions, including a love of Gumby, animals and animation.

Tom said he’s probably been to the Los Angeles Zoo and Botanical Gardens 300 times with his son, and the family regularly attends animated movies. Ezra knows that “101 Dalmatians” is 79 minutes long and was released on Jan. 25, 1961, and his memory is so good that when he finds out a person’s birthday, he can tell them what cartoon was released on that day.

The family has embraced these eccentricities.

“Instead of trying to say, ‘No, why don’t you play soccer like all the other kids?’ we’ve really encouraged him to pursue the things he’s really interested in,” Tom said.

So, in addition to being a student at Village Glen School in Culver City with other autistic youths, Ezra also takes animation classes at Media Enrichment Academy in Sherman Oaks.

“At first he just liked to obsessively talk about animation,” his father said. “But then, a few years ago, he started creating his own, which was a big leap.”

One result: Ezra made a short movie, “Alphabet House,” about letters living together and how they reacted when one of them was injured. It has been adapted with author and illustrator Tom Lichtenheld into a children’s book, “E-mergency.”

Judaism has played a role in how the family has dealt with Ezra’s special needs, too, although Tom acknowledged that it’s not that way for everyone.

“A lot of parents who are involved and active with the Jewish community and then have children with special needs find that that can isolate them,” he said.

To make things easier, Shawn started Ozreinu, meaning “our help,” a Torah study group for parents of special needs children. The family, members at the Conservative Temple Beth Am in Los Angeles, also attends Shabbat morning services there that are designed for special-needs children.

“I don’t think a lot of synagogues are doing that, but they should be,” Tom said. “[Ezra] really likes to pace around and doesn’t really like to sit down for very long, but he likes to be part of the Jewish community. Synagogues should be open to people like that and make them feel welcome. That makes everyone realize that we’re all created in God’s image, and we’re all part of the same community.”

That’s why Tom loves the way the Conservative Movement’s Camp Ramah in Ojai handles things, integrating special-needs campers with other youths in certain areas, such as art class and sports.

“At Camp Ramah, all the kids know Ezra, and they all know [he’s] the kid who can tell you what Disney movie came out on your birthday,” said Tom, who is a board member at the camp. “That’s a great model. Jewish day schools have been a lot slower.”

There are other things that help, of course, like being the middle child. Ezra has two brothers, Ami, 17, and Noam, 14.

“Ami and Noam don’t treat him like a ‘special-needs child,’ ” Tom said. “They just treat him like their brother.”

That, at its most basic, is what the book is about: getting past a diagnosis to the very human and very fascinating person behind it. What Tom said he found was pure joy.

“He’s a really happy person,” he said.

As proof, Tom recalled a visit to the zoo during which he and Ezra encountered baby otters for the first time.

“That day he was so excited, and we spent half an hour looking at the otters. Ezra kept saying, ‘I’ve never seen this before! This is something that’s never happened at the zoo before!’ ” Tom remembered. “He’s jumping up and down and thrilled to see baby otters. It’s amazing to be able to be with someone like that.”

Tom Fields-Meyer will appear at American Jewish University on Feb. 6 at 11 a.m. for conversation and a book signing. The cost is $10. He will also appear at Vista Del Mar on Feb. 21 at 7 p.m. on a book panel, “Two Fathers’ Journeys: Raising and Being Raised by Sons With Special Needs” (with Leonard Felder). Book signing to follow.

For information or reservations for Feb. 6 event, call 310-440-1246 or visit wcce.ajula.edu. For information or reservations for Feb. 21 event, visit jewishla.org.

To watch Ezra’s animated short, “Alphabet House” on YouTube, visit http://www.youtube.com/watch?v=d0LPfQLm4WA.

Almighty? No Way! Coming to Know the God We Already Love


Sometimes life presents us with challenges so arresting, so shattering that they change everything. This is the tale of a series of such moments, which began with my son’s diagnosis with autism, sending me into a tailspin and sundering my conventional ideas of God and Torah. This is the tale of my grieving, hopeful journey through libraries of science and philosophy as well as walking the streets of Jerusalem, out of which I began to articulate what I believe is a revolutionary way of loving God, God’s creation and God’s Torah. And, in the end, it is a tale of finding these revolutionary, liberating ideas hidden right where I had started — in the Torah, in the Talmud, in the Siddur, in the kabbalah. I just needed open eyes to see what had been there from the beginning, hidden under the crust of the theology most people think religion is supposed to mean.

In this season of Shavuot, I want to share a new way to receive and embrace God and Torah. But it’s also not new at all, because the God I now love is, I believe, the One you love too, and already know.

When my beautiful son, Jacob, was diagnosed with autism as a child, some 14 years ago at the age of 3, I stopped putting on my tallit and tefillin. I had been taught that God was all-powerful, which would mean God could have prevented Jacob’s autism but didn’t. I could not pray to someone who could inflict autism (or choose not to prevent it). I said to God, “It’s better if we don’t talk for awhile. You’re not going to want to hear what I have to say, and I don’t want to talk to you. So I am not going to.” And for a year and a half, God and I just didn’t talk (which is a bit awkward professionally, because I am, after all, a rabbi). I wrestled with tormenting thoughts: “I’m a good person; how could He do this to me? I keep kosher, I don’t mix linen and wool in my clothing, I help people all day long. I am fighting for the survival of the Jewish people. How could God let this happen to my beautiful, innocent son?” Rabbi Harold Kushner, author of the wonderful book “When Bad Things Happen to Good People,” says that expecting the universe to make exceptions for you because you are a good person is like expecting a bull not to charge because you are a vegetarian.

If God didn’t give Jacob his autism, doesn’t cause suffering and evil, then what is the explanation? In the words of Job: “If not God, then who?”

In order to uncover a deeper answer to this age-old question, we have to revisit the dogma of creation from nothing, a teaching derived from Aristotle and one that makes belief in God’s goodness so difficult for so many. What the Torah actually says is, “When God began creating heaven and earth, there was tohu va-vohu (chaos), and the ruach (wind/breath/spirit) of God was vibrating over the face of tehom, the deep, and God said, ‘Let there be light,’ and there was light.” According to the Torah, was there tohu va-vohu, chaos, before God started creating? Yes. Unambiguously yes. At the instant God began creating, tohu va-vohu was already existent, and the ruach of God flutters over tehom (that had to be there already for the spirit of God to be able to flutter over it). The simple meaning of Genesis 1 is that there is pre-existent darkness and chaos. The tehom, the chaos, already exists — bubbly, uncontainable and undomesticated. God’s creative act is not the special effect of something from nothing, but the steady chesed (lovingkindness) of converting chaos into cosmos. Tohu va-vohu and the tehom have always existed, and threaten still. God has always been, and is still, inviting/commanding the chaos into cosmos. We have misunderstood the nature of Divine creativity and power. 

We are taught to think about God’s power as coercive, I suspect, because when we think about human strength and force, we think of coercive power — warriors, despots, pharaohs, führers, commissars and terrorists. But it turns out throughout history that long-term power is not coercive; the most transformative power is persuasive. Pharaoh was brought down — and the persuasive ideals revealed among those ancient Hebrew slaves has been liberating people ever since. In your own life, think about the abiding impact of a really inspiring teacher. Reflect on how you have been transformed by a great mentor, or parent, or lover — people who broadened your vision, encouraged you and made it possible for you to do something you never thought possible. They did not accomplish this task using mere coercive power; they invited you to be yourself, lured you to exceed your prior limitations, inspired you to live in the light. The Bible is full of examples of God using not coercive, but persuasive power to enlist our participation in creating a worthy, covenanted future. 

During my decade of reckoning with God and coming to terms with Jacob’s autism, I began to develop a different relationship with God and a different understanding of God’s relationship to our world.
I now advocate what is called process thought, which was first articulated by mathematician/philosopher Alfred North Whitehead, enhanced by philosopher Charles Hartshorne and applied by theologian John Cobb, among a growing circle of thinkers. According to process thought, everything is in the process of becoming, and every process — you, me, the world, the cosmos, God — is not a substance, a thing, but rather a distinctive pattern of energy that retains some measure of constancy in the midst of change and growth. It is God who provides the grounds for our creativity, our becoming more connected, more just, more compassionate. It is God, working through Jacob, that allows Jacob to triumph over his autism day by day.

I stumbled upon process thought almost by accident, researching new approaches to integrating science and religion, and to how God relates to the world. About four years ago, I found an anthology, “Philosophers Speak of God,” co-edited by Hartshorne, which offers a range of philosophical understandings of God — Jewish, Christian, Muslim, Hindu, Buddhist and philosophical. I was drawn to these brave process thinkers, which led me to the contemporary writings of Catherine Keller and Cobb, and the scientific reflections of John Polkinghorne, Arthur Peacocke and Philip Clayton. Through them I returned to the writings of Milton Steinberg, Max Kadushin, Martin Buber and others. Reading them was like slipping into a soothing bath, a healing mikveh. The external, bullying, punishing ideas of God melted in the mist, leaving the transformative, healing balm of relationship, novelty and persuasion. I fell in love again — with God as understood through process and with God’s creation as a continuing expression of loving, relating and of novelty.

The insights of process thought saved my love of God, because instead of looking to God to be the all-powerful exception to the rules (the up there/out there bully in the sky), I started looking to God as the very exemplar of the rules — the One who makes it possible for us to surpass ourselves, the One who inspires us to ever-new levels of love and creativity. Instead of looking for God in magic, I look for God in Jacob’s refusal to let himself be defined or limited by his autism. I see God in Elana, my resilient and courageous wife, who refuses to abandon our son to a marginal existence. I see God’s persistent lure in people in the community who look past the autistic label and embrace Jacob — a young man of hope, strength, joy and astonishing wisdom. Working with, in and through creation is the arena for God’s unique, amazing, persuasive power. Tanks can knock down walls, but there isn’t an army in the world that can give Jacob the capacity to sit through a class for an hour and a half. That transformation requires the resilient, determined, persuasive love of God, manifest not as the exception to the rules of physics and biology, not in the suspension of Jacob’s autism, but as the way the very universe is tilted toward interrelationship, complexity and creativity. God doesn’t work from outside creation — intervening from afar. God bubbles up from within, working in us, through us and with us.

Autism groups focus on needs of grandparents


When Louise Beckman mentioned Chanukah to her toddler granddaughter two years ago, the child’s repeated response was: “No presents.”

Beckman felt rejected.

Her granddaughter, who was diagnosed with autism, has improved her ability to communicate with others due to early intervention from professionals and her loving parents. But Beckman, 63, is still grappling with what it means to have a grandchild with autism.

A member of the Tustin-based Grandparent Autism Network (GAN), Beckman turned to the group for advice.

“I was told that she probably was bothered by the noise of opening gift wrapping, which is magnified by the acute hearing experienced by many on the autism spectrum,” she said. “My gifts were presented unwrapped and were received without a stressful reaction.”

Children diagnosed with an autism spectrum disorder typically exhibit difficulty with social interaction and communication. Many autistic children have repetitive interests and activities, attachment to objects and an aversion to changes in routines. The disorder is usually diagnosed between the ages of 2 and 3 and can range from mild or high-functioning to severe in degrees of affliction.

In the 1970s, the rate for autism was 1 in 10,000. Today, one child in 150 will be diagnosed with an autism spectrum disorder, according to federal studies.

Far more grandparents than ever before are trying to make sense of this disorder, and services for grandparents are only just starting to gain momentum. Groups like GAN in Tustin and HaMercaz in Los Angeles are providing support and education for grandparents worried about the lives of their children and grandchildren.

When Bonnie Gillman, 66, learned that her grandson was diagnosed with autism, she decided to do more than shed tears.

In April 2006, Gillman founded GAN to educate grandparents about autism resources, as well as the medical, educational, legal and social issues that impact their families.

“Grandparents have a different perspective: Our children are focused on the challenges of their child with autism, meeting the needs of their typical children and just getting through a day without total exhaustion,” she said. “Grandparents are concerned about their children, all of their grandchildren and every future generation that may be genetically predisposed to autism.”

Gillman’s faith helped guide and motivate her to forming GAN, which currently serves more than 600 members.

“It has been instilled in me by my Jewish great-grandparents, grandparents and parents to help people,” she said. “Helping to bring resources to people with unmet needs has always been my priority.

“When I felt devastated and helpless to understand my grandson’s condition, I knew I had to make things better for our family,” she continued. “When I couldn’t find any information for grandparents and I knew that my feelings were universal, I wanted to identify resources to share with other families, as well.”

Sally Weber, director of special-needs programs at Jewish Family Service of Los Angeles and co-founder of HaMercaz, is also helping grandparents learn more about children with special needs.

In September, the agency offered a workshop titled, “Grandparents of Grandchildren With Special Needs Have Special Needs, Too!” at The Jewish Federation Goldsmith Center. The workshop will be offered again in spring and fall 2009.

“As grandparents, we go through a range of feelings. Some of these are triggered by the child’s behavior and how the parents react to it. Grandparents are frightened and upset that their grandchild is experiencing these problems. They’re also upset that their children have to cope with these issues,” said Weber, who is a grandmother of three and a mother of a daughter with special needs.

Weber said there are a number of reasons why grandparents of special-needs children need support. In addition to providing an opportunity to normalize feelings and express hurt or angry feelings, she said it can be a safe place to use humor, a very healing emotion that in other social settings may seem less appropriate.

Weber added that some grandparents need support because they can find it difficult to talk to their friends about their grandchildren’s conditions.

“While their friends can be compassionate, they only listen so much. Eventually, their friends move on in the conversation, discussing their own grandchildren’s accomplishments. This creates a feeling of isolation for the grandparents. They find themselves in this unknown and unexpected place. They had expectations about their grandchildren and what their lives would be like. They also had expectations about how they were going to grandparent that have to be re-examined,” she said.

Opening the Gates


Jacob Artson, 16, gave the following speech last May at a conference in Los Angeles titled “Opening the Gates: Building Inclusive Congregations and Communities for Jews with Special Needs,” where he shared the keynote address with his father, Rabbi Bradley Artson, dean of the Ziegler School of Rabbinic Studies at American Jewish University. The conference was co-sponsored by The Jewish Federation, HaMercaz, The Board of Rabbis, the Bureau of Jewish Education and the Kalsman Institute on Judaism and Health.

Hi. My name is Jacob Artson and I am a person just like you.

I am part of a wonderful Jewish family, I go to our local public high school, where I am in mostly regular classes, I play sports, I love to travel, and I enjoy hanging out with my friends and girlfriend.

The only difference between you and me is that I have lots of labels attached to me, like nonverbal, severely autistic and developmentally disabled.

It is true that I have some challenges, but there are lots of myths and misconceptions about autism out there. Many purported experts claim that individuals with autism are not interested in socializing. This is totally ridiculous. I love people, but my movement disorder constantly interferes with my efforts to interact. I cannot start and stop and switch my thinking or emotions or actions at the right time. This can make being in a big group very lonely and that is the worst thing about autism. So next time you see someone like me at your synagogue or at your event, remember that they probably feel really lonely and you could be the person to make their day by smiling at them and letting them know that they exist.

Another myth is that the majority of kids with autism are mentally retarded. In fact, our bodies are totally disorganized but our cognitive skills are intact and our minds are hungry for knowledge.

Every person alive is encumbered by challenges and blessed with gifts. I used to think that my ratio of challenges to gifts was higher than most, but now I realize that my challenges are just more obvious. I have learned that there are actually many positive aspects of autism. For example, I get a VIP pass at Disneyland and I get to kiss all the beautiful counselors at camp and pretend I don’t know any better. On a serious note, not being able to speak means that you spend lots of time listening.

In fact, much of what I know I’ve learned from listening to conversations that other people didn’t think I could hear, or listening through the wall to what the teacher in the next classroom was saying. People often ask me how I became such a good writer. The answer is that my inability to speak gives me lots of time to contemplate and imagine and also forces me to hear everyone’s perspective and think about it because I cannot interrupt or monopolize the conversation like people who have oral speech.

In the autism world we say that not being able to speak doesn’t mean that you don’t have anything to say. In my experience, the converse is also true —just because you can speak doesn’t mean that you have anything worth saying.

Since this is a conference on including people with disabilities in the Jewish community, I want to share with you the ways in which autism has affected my participation in Jewish life. I have found great support in God, Torah, and the Jewish community. The greatest single day of my life was my bar mitzvah because everyone there accepted and celebrated me for exactly who I am. At the end of the service, everyone came up on the bima for Adon Olam. I will carry in my mind and heart forever the picture of everyone there smiling at me. I had wonderful experiences when I was in a Jewish preschool and later kindergarten, even though my teachers had never had a child with autism in their class. What made those experiences successful was the way the teachers modeled inclusion for the other kids. They treated me as a person made in God’s image and not as different in any way. In kindergarten, I had amazing peers. They were mostly Persian and inclusiveness is engrained in their culture. They tried all year to get me to interact with them even though I was usually too excited to focus. I’ve also had wonderful buddies from The Friendship Circle, attended several Jewish camps, participated in a Jewish musical theater program called The Miracle Project, and prayed at Koleinu, a service at Temple Beth Am for kids with special needs.

But there have been obstacles as well. I have never attended religious school because I was bored in the special ed Hebrew school and the typical classes did not allow a place for me to engage either. When I was younger, I went to synagogue every Shabbat but the other kids ignored me. As a teenager, I have had some wonderful Jewish experiences at camp and elsewhere, but the first reaction is that I am too disabled to attend, or that I don’t participate once I’m there. So whether I’m invited seems to depend on the particular director that year. I have noticed that when I attend Jewish youth group events, the volunteers seem to pay attention primarily to the verbal kids, so I am lonely. I suspect that this stems from lack of exposure, but their youth leaders could do a better job of modeling inclusion too.

The public schools and secular programs I have attended have been much more welcoming. The public schools are overwhelmingly black and Hispanic, and they, too, seem to have a culture of inclusion. The kids at school treat me like family and pull me into everything they do. I go to a secular camp for autistic kids in Aspen every summer and everyone is welcome there. We do cool things like go tubing and white water rafting and I am able to participate in everything because I know they will work with me where I’m at.

In my secular inclusive sports program, Team Prime Time, the director has taken the time to allow for sharing on several levels, so the kids all respect me for my intelligence and understand how hard I’m working to make a basket or kick the ball. I have also been part of their new volunteer training and have spoken about autism at school, but I have never been invited to participate in volunteer training for any Jewish program I have attended.

So here is a final thought I would like to leave you with:

The best peers and aides I have had didn’t have any special background. It doesn’t actually take any training to be a leader who models inclusion. It just takes an attitude that all people are made in God’s image and it is our job to find the part of God hidden in each person.

I used to get very upset and offended at the idea of being someone’s mitzvah project or community service project. But now I see that I also have a role to play in helping create the messianic future. It is easy in our affluent society to become too dazzled by the material opportunities and the privileges that we have been born with. But I have had to struggle from the day I was born to do many things that other people take for granted. Because of that, I have experienced God’s love in a way most children have not. So maybe we are each other’s mitzvah project because I can help them see the glories of the world that they have never noticed, and they can teach me how to look like other kids. All in all, who is getting a greater benefit? In the end, together we bring God’s glory to all of humanity.

Transcendence: Jacob Artson’s eloquence and spirit defy his severe autism diagnosis


Jacob Artson needs a break. He’s expended a huge effort keeping his movements and tics under control for the past 45 minutes, and he’s ready to release some energy.

As I talk about Jacob’s journey through severe autism with his parents, Rabbi Brad and Elana Artson, Jacob takes a noisy stomp around the house, upstairs and down, banging, singing, letting out some guttural vocals.

It’s hard to reconcile this outward behavior with the lucidity of the ideas he’s been sharing with me.

“You hear so much from autism organizations about what a horrible disease this is and how the parents have been robbed of their children, yada, yada, yada, and I suppose on a certain level that is true,” Jacob told me, typing the words on a special keyboard that allows him to fully express his ideas. “But I refuse to live the rest of my life believing I am a defective human being. I have gifts and talents and challenges just like everyone else, and I have the same desire for connection and a need to be treated with dignity and respect.”

Words like these coming from an autistic boy are moving and stunning on their own, but when Jacob comes back from his break, he astonishes again: First he smothers his mother and father in hugs and kisses and then offers commentary on the things they’ve been saying while he was gone.

Jacob can hear through walls.

In fact, Jacob Artson, who just turned 16, has spent his life facing down walls — working through them, over them, around them, or sitting right on top of them with his feet dangling over the edge.

Jacob is considered severely autistic — it takes great effort for him to regulate his movement and his behavior, and he has very little spontaneous, relevant speech.

At the same time, he is intelligent, optimistic, spiritual, witty and more emotionally attuned than most people.

He conveys his thoughts through a method called “facilitated communication,” which means Elana, or another facilitator, holds a hard plastic card the size of a take-out menu with the standard QWERTY keyboard printed on it. As we talk, Elana supports Jacob’s wrist and helps keep him focused and calm. She reads aloud as his finger skims over the board.

In this High Holy Day season of cheshbon hanefesh — accounting of the soul —Jacob puts into stark relief the notion that the outer self is not always a reflection of the inner. His reality challenges us: Do we judge people by what we see? Do negative myths become self-fulfilling prophecies, or do we summon all our resources to shatter those myths, as Jacob and his family do every day? Do we define ourselves by our limitations, or do we forgive our own shortcomings? And are we capable, like Jacob, of transcending obstacles? Of listening through walls?

ALTTEXT
The family visited the White House during the “Opening the Gates of Torah” conference in Washington, D.C., December 2007

My bar mitzvah


You might recognize Wyatt Isaacs from the HBO documentary, “Autism: The Musical,” which demonstrates how a group of children with autism — a developmental disorder that affects social interaction and communication — could exceed expectations by staging their own theatrical production.

In fact, Wyatt just recorded the song he wrote, “Sensitive,” with actor Jack Black.

Wyatt also recently celebrated his bar mitzvah through Nes Gadol, a Vista Del Mar and The Miracle Project program that helps children with varying degrees of learning challenges become sons and daughters of the commandment. When The Journal talked with Wyatt last year, the prospect of facing an audience as he stood on the bimah intimidated him.

“Standing in front of all those people is going to be hard, because you have all those eyes on you,” he said.

What follows are Wyatt’s thoughts about his bar mitzvah as transcribed by his mother, Diane Isaacs.

On April 6, I had my bar mitzvah at Vista Del Mar.

When I walked into the sanctuary and saw all my family and friends, it felt different this time.

There were so many people — I was excited. I always love walking into that holy room; I feel God. When I touch the Torah, it’s like touching God’s heart — this was really big! So many people. And I was scared.

Then music made me calm. I sang the songs with everyone and it made me feel loved.

I wore my tallis, like a sheet of God; it was keeping me warm. There are a lot of different kinds of warm, but this one went into my heart — it brought light inside … I am trying to describe it but it is hard sometimes.

It was interesting to hold the Torah — it felt like I was holding my heart. When I carried it up the aisles, and everyone was touching the Torah, they were touching my heart. I was amazed.

I had to sit and regenerate as I waited for my turn to chant and read the Torah. I studied very hard to be able to read the Torah without vowels.

I worried that I would mess up. When I take out my limits, I free myself and am no longer scared. I realized I could not make a mistake up there. Elaine held me, Kat was there with music and Cantor Steve supported me.

My heart was going really fast. It was saying one thing: “All you need is your heart’s desire and love is what my heart wants.”

My heart uplifted when the words came out. I chanted them and it felt easy on that day!

I realize that when people accomplish something really big, life is great. When I was reading the Torah, I went into another world. It was peaceful.

I know that getting things and receiving things are OK, but giving back to the world is better. I will always give things to others. If you get something, you give back.

I received a yad from my grandpa, a Kiddush cup and lots of presents — and, most of all, I got a message: always live love.

You can always get presents, but discover the gifts inside that are already there. You don’t need so many things. If I could give up wealthy belongings I would, but the tricky thing is that we live in America — and America is things, things, things — but life outside our midst of clouds is love. Most people miss it.

Special needs program puts spotlight on the siblings


Barbara Azrialy spent much of her childhood in Cincinnati pretending to be an only child. In fact, she had two brothers, one five years older and the other three years younger. Both brothers were mentally retarded.

“Nobody talked about it back then,” said Azrialy, 62, now a special education teacher with the Los Angeles Unified School District. “The worst kind of disability was something to do with the brain. If it was an obvious one like being blind or deaf it would have been more acceptable.”

While attitudes have changed in the intervening years, “It’s still difficult for a sibling to go unscathed,” she said.

HaMercaz hopes to change this. A collaborative project of The Jewish Federation of Greater Los Angeles, Jewish Family Service and seven other Jewish community agencies, HaMercaz (which means “the center”) assists families with children up to age 21 who have developmental and learning disabilities such as autism, ADHD (attention deficit hyperactivity disorder) or mental retardation.

The two-year-old program serves as a “one-stop-shop” for families, providing guidance, support, education and referrals. Programs include a toll-free warmline; support groups for mothers, fathers and grandparents; and referrals to agencies that can provide assistance, such as interest-free loans or parent respite.

This year, HaMercaz is focusing on the needs of siblings, said Sally Weber, JFS’ director of Jewish community programs and a co-founder of the program.

“The sibling relationship is the longest lifetime relationship,” she said. “It can have significant implications as siblings grow older.”

In October, HaMercaz held a workshop for parents on the special needs of siblings, presented by marriage and family therapist Diane Simon Smith.

“Children may be confused about their sibling’s condition or have misconceptions about the cause of the problem,” she said. “They may resent the disruption of plans, frequent medical and therapy appointments or attention required by the special-needs sibling. They may feel isolated, embarrassed or an undue pressure to achieve.”

For Azrialy, who wrote a book about this topic, the overwhelming issue was guilt.

“I felt guilty for being healthy … for not being a good enough sister, for things coming so easily to me,” she said. “I didn’t do anything to deserve my good health, and [my brothers] didn’t do anything to deserve what they got.”

Parents can help mitigate such sentiments, Simon Smith said.

“It’s important for parents to provide a safe place for siblings to talk about the range of their feelings, whether with them or another safe adult,” she said. “Also, providing siblings the opportunity to meet peers in similar life circumstances helps them realize that they are not alone and that the kinds of feelings they experience are shared by others.”

Smith said that along with presenting challenges, having a special-needs sibling bestows certain gifts.

“These children tend to have greater maturity,” she said. “They have a different outlook, and a sense that other kids can be consumed with trivial things. They learn compassion, tolerance and understanding of others’ differences.”

This seems to be the case for Rachel Wolf. A 16-year-old student in the Humanities Program at Hamilton High School, Wolf has a 12-year-old brother, Danny, with cerebral palsy. He uses a walker or chair to get around, and communicates with non-family members using a touch-screen computer.

“I’ve never known life any other way,” she said. “He’s still my brother.”

Wolf has benefited from parents who speak openly with her about Danny’s condition (her mother, Michelle, is the other co-founder of HaMercaz), a supportive community and participation in programs for special-needs families. She and Danny especially enjoy taking part in the Miracle Project (not affiliated with HaMercaz), a drama program for special need kids and their “typically developing” siblings and peers.

“Everyone has quirks and ‘special needs,'” Wolf said. “Sometimes it just doesn’t show.”

Based on the growing incidence of autism spectrum disorders alone, demand for programs like HaMercaz is likely to increase. A neurological condition, autism affects a person’s ability to communicate, form relationships and respond appropriately to the environment. Whether due to changes in how children are diagnosed or an actual increase in prevalence, autism is growing at the rate of 10 percent to 17 percent a year, according to the Autism Society of America. In California, reported cases increased by 273 percent from 1987 to 1998.

HaMercaz will hold more sibling-related programs in the coming months. In December, the group will host a Chanukah celebration at the Skirball Cultural Center and will hold a family day at the Zimmer Children’s Museum in February. Other programs slated for next year include a three-part workshop on the Individualized Education Program (IEP) as well as programs on safety, vocational needs, and dealing with difficult behavior. Families are also encouraged to contact partner agency Jewish Big Brothers Big Sisters of Los Angeles to match siblings with Big Brothers and Sisters.

For more information, call 1-866-287-8030 or go to www.HaMercaz.org.

Nes Gadol calls its first autistic students to the Torah




Neal Katz runs up to the ark and opens the door. Blond-haired and bubbly, he points to the scroll, unable to articulate his desire.

“Do you want to touch the Torah?” Cantor Steve Puzarne asks.

The 13-year-old is autistic and nonverbal. Instead of using words, he mumbles enthusiastically.

It’s a typical Wednesday afternoon on the bimah at West Los Angeles’ Vista Del Mar, a onetime Jewish orphanage that evolved into one of the nation’s largest, most comprehensive child services centers. Puzarne and Neal are in the campus’ aging sanctuary as part of Nes Gadol, an effort launched by Vista Del Mar last February in conjunction with The Miracle Project to help children with varying degrees of learning challenges become sons and daughters of the commandment.

The cantor lifts the Torah out of the ark and into his own arms, resting its weight against one shoulder. He tells his student to kiss rather than handle it. Neal is carefully reverential as he leans in to make contact with the Torah’s cover.

“Do you want to try carrying it?” Puzarne asks.

But the teenager isn’t listening anymore. He takes off up the aisle, and Puzarne follows him outside, still carrying the Torah, hoping to reconnect with the boy in the foyer when he’s ready.

Neal’s mother, Elaine Hall, 50, is a children’s acting coach and founder of The Miracle Project, a theater and film arts program designed to help children with autism and other special needs. Hall said a bar mitzvah for her son seemed unrealistic until she received a phone call from Vista Del Mar CEO Elias Lefferman last October with the idea for Nes Gadol.
“I never conceived he’d ever have a bar mitzvah,” she said. “You never think about that.”

On May 28, Neal and 15-year-old William Lambert will become the first students from the group to be called to the Torah. For special-needs teens, the specifically tailored program represents a way to connect with a Jewish rite on their terms. And the parents say it’s particularly gratifying to find a way for their children to be included in the tradition.

Nes Gadol, Hebrew for “a great miracle,” is one of many outreach efforts in Los Angeles aimed at boys and girls with special needs, including synagogue programs like Temple Beth Am’s Koleinu, Valley Beth Shalom’s Shearim and Temple Aliyah’s Otzar. But Vista Del Mar’s program is the first nondenominational one, which organizers hope will allow them to reach special-needs families who might not have considered joining a synagogue for their child’s bar or bat mitzvah.

While Hall runs the program, she credits Vista Del Mar’s Lefferman with developing the concept. “He’s a visionary,” she said. “He’s really quite extraordinary.”

Nes Gadol is funded through a grant from the Rosalinde and Arthur Gilbert Foundation.
In addition to Hall, the program’s staff includes Puzarne, founder of Breeyah, which develops creative worship services throughout the country; Rabbi Shawn Fields-Meyer, who leads Ozreinu, a spiritual support group for families with special-needs children, and Jackie Redner, rabbi of Vista Del Mar Child and Family Services; Karen Howard, a music therapist; and Rachelle Freedman, a Jewish theater instructor. Volunteers and typical b’nai mitzvah students with mitzvah project assignments also participate in the program, and Rabbi Bradley Shavit Artson, dean of the Ziegler School of Rabbinic Studies at American Jewish University (formerly the University of Judaism), serves as its adviser.

Currently seven students are enrolled in the program’s first year, all of them boys who live at home. More than 80 percent of Americans diagnosed with autism are male.

Children diagnosed with autism typically exhibit impaired social interaction, impaired communication as well as restricted and repetitive interests and activities. Social interactions can be awkward and conversations can elicit unusual, incongruous responses. Many autistic children have repetitive body movements, attachment to objects and an aversion to changes in routines. The disorder is usually diagnosed between the ages of 2 and 3 and can range from mild or high-functioning to severe in degrees of affliction.

In California it’s the leading disability among children, ahead of cancer, diabetes and Down’s syndrome, the state Department of Developmental Services reports. One in every 166 children today is born with the disorder, according to the Centers for Disease Control and Prevention, and some studies are now putting that number closer to one in every 150 children.
While there are a number of theories regarding the rise of autism, no definitive cause has been identified.

Hall adopted Neal from Russia through Vista Del Mar when he was 2 years old, and she said his small size made him look to be about 9 months old at the time. He was diagnosed with severe autism shortly before his bris, at 3 years old.

At 7, Neal’s body movements were so out of control that Hall couldn’t keep pictures or mementos on the walls of her home because he would knock them down, and she didn’t have time to cook while he was awake, because she spent her time trying to engage him and keep him safe.

After traditional therapy failed her, she implemented a “floor-time approach” with Neal and joined him in his world. “If he wanted to spin, we’d spin,” she said. “When he wanted to stack toy cars, we would stack cars with him until he one day gave us one of his cars and made eye contact.”

Despite his linguistic challenges, Neal can verbalize some words, like “momma,” and communicates with a portable TypeSmart keyboard that vocalizes his thoughts for him.

Now in Santa Monica’s Lincoln Middle School, he is enrolled in five regular classes with the assistance of an aide and two classes for learning-disabled students. He even has two friends who are typically developing teens.

“Everything with autism just takes more time,” Hall said. “But he wants people to know what he thinks.”

A Circle of Friends


For several weeks, I had been visiting Nathan, a 6-year-old boy diagnosed with autism. We had been brought together through the Conejo Valley Friendship Circle, an organization that extends warmth to families in the community that have children with special needs.

Nathan was unable to verbally communicate any of his ideas, wishes or thoughts, despite numerous psychiatrists, speech therapists and trained counselors who tried to improve his speaking abilities.

At our weekly play dates, I began to mimic and articulate many words to Nathan, even though I felt that it would have a minimal impact on him. For instance, when he wished to continue jumping on the trampoline, I would repeat the words “more” and “again” to him. After several weeks, and to my great surprise and satisfaction, Nathan said his first word … “more.”

One could imagine what raced through my mind. Here, a naive and sometimes foolish 15-year-old boy was able to accomplish in a few short weeks what dozens of therapists and psychologists could not accomplish in six years.

But even more fun and gratifying was the friendship we began to develop. Never in my life had I witnessed anything as pure as watching Nathan ride a bike or the joy he would express while jumping on a trampoline. He became more than a friend … he became my companion. I felt that he was the only individual that didn’t judge me. All he asked was that I come to his house once a week and play with him.

The Friendship Circle has changed, and in a way, rewritten the way I view my life. Like many other teenagers, before I joined the Friendship Circle, I found my life to be ordinary, tedious and mundane. I found that my soul was constantly yearning for a more meaningful existence. In the beginning, I joined the organization in order to acquire community service hours and perhaps impress some college that I planned to apply to in the future. Unknown to me at the time, I would soon fall in love with the organization.

The Conejo Valley Friendship Circle began in 2003 to offer volunteers services, events and support to special-needs families: 125 families with special-needs kids throughout the Conejo and West San Fernando valleys participate, and 250 teenagers are volunteers. On March 26, 600 people gathered at Agoura High School for a walk-a-thon and family fun day to benefit the Friendship Circle. The special-needs kids and their families walked the first lap of the 5K walk, and then the rest of us joined. We raised $80,000 for Friendship Circle programs.

Every Friendship Circle event is special in its own way; whether it is the weekly Fitness Center program or the annual Purim Carnival, each event brings a distinctive dimension to the program. Children, parents and volunteers together unite and form a bond unlike any other friendship or companionship. Within our own communities, we form a small neighborhood of trustworthy friends that care not only for the benefit of themselves but also take the time to realize the good that they can bring to the world.

The core program, Friends at Home, is the one that brought us together. Every member within the organization is assigned to a particular family, whom he or she befriends and visits once a week. At the outset, I was impressed with the professionalism the organization allowed me to acquire. “Friends at Home” and meeting Nathan helped me understand how one person can have a deep and significant impact.

The Friendship Circle puts individuals in a situation where they can and will make a difference. Although every situation cannot be as intense and gratifying as my own, I am certain that each individual the organization touches is affected in a deep, momentous manner. Each volunteer becomes a part of their child’s life — an important part, a part that cannot be replaced by any trained guide or psychologist. Every kid needs a friend; the Friendship Circle strives to give each child that is in need a friend; and teenage volunteers have their soul touched in a sentimental, life-changing way.

As much as every child needs a friend, it is evident that teenagers need a friend, too. I’m not referring to the friend that you take to the mall or go to a party with, but everyone needs a real friend. A friend that will not judge will not hate and will not disappoint … a friend that will not ask anything of you but your friendship. Everyone needs a “Friendship Circle” friend.

For more information about the Friendship Circle of the Conejo Valley, call (818) 865-2233 or visit

Does Autism Offer Special Gifts?


“Identify yourself,” Seth says when meeting someone new. “Oh, my deepest apologies,” he’ll tell you, his curled hand over his heart as he delivers a deep bow, if he thinks he has made some kind of error.

Sometimes his face comes very close to yours to get your attention, telling you something that just cannot wait. “I am Sethman, not Sethy,” he reminds us.

“I am an adult. Live long and prosper,” he continues, using a Spock phrase right out of “Star Trek,” talking out loud using the priestly hand gesture, arm outstretched, reminding himself that his favorite TV characters Spock and Captain Kirk are Jewish. In fact, he tells those around him that they are Jewish.

We call his phrases “Seth-isms.”

It was not that many years ago that if you told someone your child had autism they would tell you their child is artistic, too. No kidding! And what about those well-meaning people who would tell you how God chose your home to place this special soul, knowing that you would love and cherish him or her.

How could we be so lucky?

Today we would submit that Seth is probably the best thing that has ever happened to us … or one of the best things anyway. We never have to worry about him ripping off hubcaps. A stickler for following rules, often profoundly shy (unless he knows you) he runs for the hills if he hears foul language on television. But way back when … make no mistake about it; those early years were a real challenge.

The Seth of today is almost always a joy for us. But he’s still so very different, unique.

Seth has often been told he looks like Ben Affleck and Keanu Reeves. That has prompted him to declare that he wants to be an actor. After all, since Ben Affleck and Keanu Reeves are actors, then he should be one, too. That’s logical, isn’t it?

Twice a week he leaves the gates of his transitional program at The Help Group and strolls over to Valley College where he takes an acting class — his favorite thing to do. Popular in his class, he is often used as a straight man. And since Seth can quickly memorize lines and seems to have stage presence, why not become an actor? Stranger things have happened, maybe.

At home you will often see him playing soundtracks from movies while seemingly conducting, using his index fingers for a conductor’s baton.

“I love conducting,” he’ll tell you excitedly.

He’ll pantomime words used by comedians while staring into the mirror, all the time conducting.

Do-gooders might tell you that having a special-needs child is like taking a vacation to Hawaii and winding up in Alaska. Hogwash! Taking a vacation to Hawaii and winding up on Mars is more like it — even when you end up treasuring the results.

As we faced those challenges we gained strength from my research into the life of Albert Einstein, a very unusual human being. In 1988, I began to look into his life, having long ago heard about his quirks and thinking what oddities genius reveals. What if Einstein was like this, too? After all, Einstein’s parents had been very worried about him when he was a baby. His head was unusually large (something being studied today as many children with autism are born with unusually large heads). His grandparents thought he was a dolt. He was a late talker, did poorly in school, was a loner, solitary, suffered from major tantrums, had no friends and didn’t like being in crowds.

What if Einstein had some form of autism? After two years of research with Dr. Edward Ritvo, a highly respected child psychiatrist at UCLA who is now retired, I had come to believe Einstein did have autism. Einstein was unusual his entire life. I spoke about Einstein at autism conventions and wrote about him in my last book. If Einstein did have autism and could do what he did in spite of his autism, or, perhaps because of it, what did this mean for others diagnosed with it?

The number of people now diagnosed with autism is staggering, especially in light of the fact that, not long ago, few had even heard the word. About 1.77 million people in the United States or one out of every 33 boys (boys are diagnosed approximately four times more often than girls) or 166 people per 10,000 have autism.

What was a very rare syndrome in the 1960s is pervasive today. And the numbers keep rising.

Have you heard of Sue Rubin?

Sue is a nonverbal young woman in her mid-20s who has autism. Sue, once thought to be “severely retarded,” is nothing of the kind. Through something called Facilitated Communication, a somewhat controversial form of therapy, it was discovered that Sue was brilliant in mathematics. Sue received a hefty scholarship for college and wrote a screenplay in 2004 titled “Autism Is a World.”

What about Ben Golden?

He is a young man in his mid-30s, nonverbal and autistic. He and his family moved to Israel several years ago. Like Sue, Ben also communicates using Facilitated Communication. That is how his family came to understand just how much their son really knew. Today, people come long distances to visit with Ben. He tells them about themselves and gives them guidance. Those who visit with Ben are frequently in awe. He seems to know things about those who come to see him. Psychic? Who knows. But apparently he’s quite gifted, and his essays can be found on the Internet.

Ben, Sue, Seth — a few names of some unique special-needs people. In the grand scheme of things, maybe it is those with special needs and differences who have the answers. Wouldn’t that be something!

Illana Katz, a former staff writer for Jewish Heritage, has written six books, two of which focus on autism.

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Strange Fire


 

The Chasidic Reb Nachman of Bratslav tells of a king’s son who goes mad: he believes he is a turkey.

The boy removes all his clothes, spends all his time under a table and refuses to eat normal food. Distraught and alarmed, his father summons in all manner of experts, but none can cure the boy.

His tale of disappointment turns into a tale of revisioning and change: After a long time, a wise man arrives at the palace, and asks to see the prince. The wise man joins the boy under the table, and declares himself to be a turkey. Little by little, the two become comfortable with one another, and gradually the man encourages the turkey-prince to put on his clothes, then eat human food and finally to join the rest of the family. In this manner, the Chasidic master says, the wise man cures the prince.

I think of this story often as I meet with parents of children with special needs. Once a month, we gather to study Torah and offer each other support in the challenges of raising children with a wide variety of disorders, from autism to bipolar disorder to Tourette’s syndrome to ADD (my own middle son is a 9-year-old with autism). Parenting such children, one can easily empathize with Rabbi Nachman’s king, who is confused, saddened and desperate to help his son.

By joining the child in his world, the sage first transforms himself, ultimately paving the way for the transformation of the child. For many parents of special-needs children — often highly unusual children whose neurological, emotional or physical makeup prevent them from relating to the world in typical ways — this painstaking, exhausting approach is sometimes the only effective one. Parents who want to reach their children journey — for days, months, years — out of typical life and into their child’s orbit. They join them under the table — a powerful way to reach one’s child. But it is also difficult and often terribly isolating.

In this week’s Torah portion, two of Aaron’s sons, Nadav and Avihu, themselves act in an unusual way. They enter the sanctuary and — as the Torah describes it — “offer strange fire” to God. (It might have been an isolated incident, but could have been the final act of years of this kind of behavior.) As a result, the two young men are punished and wiped out by God. But what was their “strange fire”? Some interpreters suggest that it was something impure, a sign of arrogance, rude behavior and crossed forbidden boundaries. But others, sympathetic to the two, argue that it was their overflowing passion for God — their uncontrollable desire to be close to the divine — that ultimately burned them.

Fire can be dangerous and harmful. But it is also the source of light and heat. The parsha is silent on the community’s response to the strange fire. What was their communal response? What if the community had seen the boys’ fire in a different way? What if they had been seen by parents, mentors and peers as warm and inspiring, instead of treacherous and out of bounds? What if their fire had been taken not as destructive to others but enlightening? A strange fire, perhaps, but an acceptable one? Different, but not deplorable?

The strange fire alight in my son is called autism. And we are not alone: One child in every 166 nationwide is now diagnosed with autism. The Jewish community is not immune to this epidemic. The children affected by autism and other disorders are challenging, unusual and, sometimes, distracting. But they are also beautiful, creative, loving and bright, and — as Jewish tradition teaches — made in God’s image.

And they are ours.

Was the turkey-prince really cured by the wise man? Probably not. He probably always retained his unusual disposition, probably always felt a little odd and might have even yearned to slide back under the table. But the sage reached the child, and this allowed the child to find his place in the community.

Perhaps, instead of seeing a dangerous, uncontrolled combustion, we can begin to perceive the holy fire of these children as precious; something divinely given and burning with a holy passion. Something for our entire community — our synagogues, schools, youth groups, camps and social circles — to warm ourselves by. Something not to for us to transform, but to transform us.

Rabbi Shawn Fields-Meyer is founder and facilitator of Ozreinu, a spiritual support group for parents of special-needs children. She can be reached by e-mail at ozreinu@yahoo.com.

 

Torah Lover Beats Odds


Joey Schwartzman has a passion for clocks. He is also crazy about street addresses, dates and numbers of any kind. And he has one more enthusiasm not often seen in 15-year-old boys: he loves reading Torah and Haftorah at his synagogue, Westchester’s B’nai Tikvah Congregation.

What makes this truly remarkable is the fact that Joey has been diagnosed as autistic. A few years back, he was likely to disrupt services, or fall asleep on a couch outside the sanctuary. But he was fortunate to be part of a warm-hearted community that has known his family for three generations. As his bar mitzvah approached, a congregant with a background in psychological counseling devised a special Hebrew school curriculum for him and another boy with autism.

Joey’s parents also shared with him their own areas of expertise. Jeff Schwartzman, a math teacher who for 15 years has been one of the congregation’s chief Torah readers, taught his son the intricate system of musical tropes that allows him to read accurately from the Torah scrolls. His mother, Chellie Schwartzman, tutored him in chanting the section of the service drawn from the writings of the prophets.

Autism is a wide-ranging disorder affecting social and communication skills. But higher-functioning autistic youngsters can have special talents too. Joey is blessed with a keen memory, as well as impressive musical gifts. He has perfect pitch, and upon hearing a noise — like the ding of an elevator bell — can correctly identify its pitch. All this has helped him master the prayer service, leading him to become a mainstay of B’nai Tikvah’s Shabbat and High Holy Day celebrations.

On mornings when Jeff Schwartzman serves as Torah reader, Joey often assists in the role of gabbai (prompter). Both father and son feel proud when Joey catches his dad in small errors. Says mother Chellie, "When he’s up there he just knows what to do, and he’s very mature. At school, it’s hard for him to be successful. So we’ve found a place where he can be successful."

Now that brother Ben is moving toward his own bar mitzvah, Joey has been coaching him for his big day. Ben, 12, considers this a nice turnabout, because he often instructs Joey in commonplace matters like how to throw a football and play computer games. Ben credits his brother with promoting the family’s connection to the synagogue: "Sometimes when we don’t feel like going, he’s urging us to go."

Four years ago, when Rabbi Michael Beals arrived at B’nai Tikvah, he didn’t know what to make of Joey. During services, Joey tended to imitate his words and gestures, leading the rabbi to assume the boy was making fun of him. He expressed his displeasure to the Schwartzmans, who explained, "This is not disrespect. He likes you. He wants to be like you." They also gave him a book on autism.

Now Beals is one of Joey’s biggest fans. He praises Joey’s progress: "In his evolution, I feel I’ve evolved too. So he’s helped me with my education," Beals says. "It’s not simply that Beals has learned about autism. Joey’s example has taught him to be careful of his own rash assumptions. "Those with handicaps have much to teach us of how we look at things, that things aren’t always what they appear to be. One should never count people out."

Your Letters


Autism Support

What a tremendous service you are doing by educating people about the rise in cases of children diagnosed with autism and the need for greater support for families with children with special needs in the Jewish community (“Beyond the Wall” and “Chinese Box,” April 27). Two years ago, Sinai Temple started a support group for parents of children with special needs. The group, co-sponsored by University Synagogue and Temple Beth Am, provides an outstanding opportunity to meet with other parents who can share experiences, support and resources. For more information, call (323) 761-8800 ext. 1255.

Marilyn Stern, Los Angeles

Welcome to Agoura

Seven years ago, Abraham Joshua Heschel Day School West opened our doors in Agoura. Today, as the Conejo Valley’s first Jewish day school, educating nearly 200 students, we wish to welcome the Conejo Jewish Day School with a resounding mazal tov. The Conejo Valley is experiencing a renaissance in Jewish education, tradition and commitment that benefits our entire community. We are delighted that a traditional school is joining our community school in educating Jewish children.

Nikki Schenck, Principal Abraham Joshua Heschel Day School West

Jay Lewitt , President Board of Directors Abraham Joshua Heschel Day School West

Brit Milah

As a urologist-mohel for 18 years, I have never had a request for hatafat dam brit in lieu of brit milah (“Circumcision Lite,” April 13). Today, however, mohels are often confronted by Jews influenced by secular changes and/or with less religious background and commitment.

If Susanna Crosby Perrin wants to report significant trends, she might consider the increased use of anesthesia with brit milah. Recommended by the American Academy of Pediatrics, circumcision anesthesia is now the norm. In my experience, most parents request anesthesia, and when offered, all welcome it. Anesthesia allays anxiety regarding pain, and in doing so tears down the most common barrier for parents considering brit milah.

Dr. Samuel A. Kunin, Tarzana

‘Constantine’s Sword’

I disagree with Dennis Gura’s review of James Carroll’s excellent work, “Constantine’s Sword” (“Divine Love Diluted,” April 27). Gura writes, “[One] gets the impression that for Carroll, Jews are never quite real.” Carroll never claims to be an expert on Judaism or Jews. His emphasis is on tracing the long history of persecutions and the anti-Jewish theological underpinnings that caused them. He defines the problem within the context of the organization from which they sprang: the Catholic Church. In this he does an admirable job.

“Constantine’s Sword” was inspirational because of the vast, detailed and rigorously honest attempt to document the Catholic Church’s history in relation to the Jewish people. Change can only come about when the Christian world starts to confront the anti-Semitism contained in its texts, its theology and its institutions. We should applaud Carroll’s efforts heartily. This is an important book for Jews because it describes what we have experienced for so many years living in the Western world. However, it is even more important for Christians to read. If every educated Christian would read this book, the Christian world might find its cure for the disease of anti-Semitism.

David Steinberg, Los Angeles

Home Schooling

I enjoyed Jane Ulman’s article (“We’re Really the People of the Question,” April 13), but I take exception to her referring to home schooling as not being a viable or valuable idea. I home schooled my two children for four years and it was most certainly viable and incredibly valuable. It was a great period in our lives, as we slowed down the pace of our lives to spend time and effort to discover ourselves and each other.

Dr. Jennifer Holtzman, Valley Village

Corrections

In the April 27 article “A Normal Israel, in Agoura,” Los Angeles Hebrew High School was incorrectly attributed to the University of Judaism (UJ). The school is operated by the Jewish Academy of Los Angeles and rents space from UJ on Sunday mornings.

An editing mistake led to a factual error in the April 27 article “The Necessary Next Step.” Conejo Jewish Day School will be held on the same site as Camp Kinneret, which leases its facilities from Gateway Church.

Next week: More letters and views on the Exodus controversy.

Sound Advice


Two recent conferences held in the Jewish community — one on autism, the other on a wide scope of disabilities — demonstrated the difficulties of reconciling research and reality when it comes to helping individuals with special needs.

The University of Judaism (UJ) held its second annual symposium on autism March 2. About 150 people, from both inside and outside of the UJ, attended the conference which emphasized using behavior modification as the most effective response to autism.

Keynote speaker Gina Green, Ph.D., president of the Association for Behavior Analysis, devoted much of her speech to dismissing other popular and controversial treatments, including facilitated communication, where severely autistic individuals are helped to communicate via typing on a computer, and dietary interventions such as gluten-free and milk-free diets, as bunk.

Taking a different tack, the Bureau of Jewish Education (BJE) sought to address the challenge of educating parents as well as teachers with the Special Needs Information 2000 held Feb. 6 at Stephen S. Wise Temple. More than 400 people, mostly parents, attended seminars on such subjects as evaluating a school for the child with special needs, getting the most out of state-funded service centers, and how to include the developmentally disabled in a yeshiva setting.

The all-day seminars attracted popular local speakers like Dr. Susan Schmidt-Lackner, medical director for the UCLA Neuropsychiatric Institute’s early childhood partial hospitalization program, who spoke on new trends in medicine for treating people with autism. Like Green at the UJ symposium, Schmidt-Lackner advised her audience to be cautious about falling under the spell of untested or unreliable treatments.

“You have to be very careful because there is going to be a ‘cure du jour’ out every week. We do not want our children to become guinea pigs,” she said.

In another session, representatives from the Westside Regional Center outlined the services available for parents and how to develop a good relationship with a child’s caseworker.

“What is so overwhelming for parents is that it feels so difficult to get the services you need,” said Soryl Markowitz, a WRC quality assurance specialist. “But the more knowledgeable you become, the more you will be able to access those services.”

Dina Kaplan, an attorney whose six-year-old son has multiple disabilities, agreed that knowledge is power when it comes to helping children with special needs. Kaplan is executive director of the K.E.N. Project, a parent training and advocacy organization.

“I tell parents all of the time it is very important to educate yourself regarding your child’s rights, the services they are entitled to and how to get them,” she said.

The Information also featured booths hosted by special needs schools, support groups and other resources including the Julia Ann Singer Center, Vista Del Mar, the Autism Society of Los Angeles, the UCLA Family Support Community Program, Etta Israel and the Chai Lifeline for children with catastrophic illnesses.

“There is a great need for ongoing seminars of this sort,” said Kenneth Schaefler, Ph.D., director of the BJE’s Department of Special Education and Psychological Services. Schaefler is looking for “angels” to help fund seminar speakers and pay for substitutes so schools do not have to close for their teachers to attend special needs in-services.

The BJE, a beneficiary agency of The Jewish Federation of Greater Los Angeles, has a special education department that holds ongoing forums for parents and educators. For more information call (323) 761-8629. Those interested in joining the field of special education graduate programs are urged to call (310) 476-9777.

Autism: The New Epidemic


Barbara and Sheldon Helfing never
expected to have one autistic child, much
less two. Their son Leland, now 5, was born
prematurely and began showing signs of a
neurological disorder before reaching his
1st birthday.

“Leland had very poor balance and he
wasn’t yet responding to us with words or
gestures,” Barbara said. “But initially autism
did not come up because he was clearly
interested in his surroundings and in other
people.”

Leland began getting help through the
state’s Early Intervention Program. However,
since the state agency did not require a
diagnosis prior to providing services, the
Helfings had no idea that their son’s
problem might be genetic. When Nathan
was born, the Helfings rejoiced in their
healthy new son, but by the time he was 18
months old, the heartbroken parents could
no longer hide from the fact that their
younger son had also fallen prey to the
disorder.

The Helfings are part of a growing trend that
is affecting the Jewish community in
unprecedented numbers. The statistics
most often quoted in past reports about
autism state that autism spectrum disorders
occur in four to five in every 10,000 births.
However, according to the Autism Society
of Los Angeles, a soon-to-be-released
report on children in the state of California
shows a 400 percent increase between
1986 and 1996 — or one in every 500 births.

In terms of the Jewish community, a study
being performed at Stanford University’s
School of Medicine is looking into how
families of Ashkenazi origin are affected
(see box). Researchers stress that so far
there is no indication that Ashkenazi Jews
have more of a tendency toward autism than
the general population. However,
professionals who work with autistic children
say the overall increase in cases has had a
definite impact on Jewish families.

“While I would not say the Jewish community
is any more hard hit than other communities,
we are certainly seeing plenty of Jewish
families with this problem,” said Dr. John
Lutzker, chair of the department of
Psychology and director of graduate training
at the University of Judaism in Los Angeles.
“I have contact with the (state-run) Regional
Centers and with the school districts and
they cannot put a lid on this. It is indeed an
epidemic.”

Dr. Sandra Kaler, a psychologist
associated with the Neuropsychiatric Unit at
UCLA, agrees.

“The Jewish community has been equally
struck by this and I think there was an
assumption we would not be,” Kaler said.
“Now when I go out to a Jewish preschool to
do an evaluation, I frequently see one or two
children with autism, where before it was
very rare to see more than one.”

Autism is a neurological disorder that
typically appears during the first three years
of life and includes disabilities or delays in
the areas of social skills, communication
and cognitive development. Children can
either be born with the disorder or develop
normally and then regress, usually between
the ages of 18 and 24 months. It occurs four
times more often in boys than in girls (one
reason why scientists suspect a genetic
link). About 70 percent of children with the
disorder also show some degree of mental
retardation. Autism is considered a lifelong
disability, but with early intervention many
children learn enough skills to lead
independent lives.

No one knows for sure what has caused the
skyrocketing numbers of children diagnosed
with autism. Because of the gender bias
and because so many families have more
than one child with the disorder, several
ongoing studies are focusing on the
existence of a genetic link or mutation.
Other scientists are examining
environmental factors like diet, vaccinations
and pesticide exposure.

Part of the rise in incidence may be
attributed to a change in the definition of
autism spectrum disorders. For many years
it was easy to tell children who fit the classic
diagnosis of autism: An inability to relate to
others, poor or no speech, violent or
self-injurious behavior, repetitive or
seemingly meaningless activities. However,
the diagnosis has evolved to include
children who relate fairly well socially but
who have delays in other areas like
language or fine motor skills. (This is
sometimes called pervasive developmental
delay, not otherwise specified or
PDD-NOS.) On the other end of the
spectrum are children who have solid
communication skills but find it difficult to
relate to other people, sometimes
becoming obsessed with a narrow range of
ideas or objects, a disorder known as
Aspergers Syndrome.

But Lutzker said the change in evaluations
cannot completely explain what
professionals are seeing in their offices.

“It’s an interesting dilemma: Is it that we are
more aware of autism or are there truly
more incidents? I’m inclined to lean toward
more incidents just because of the endless
number of children we are seeing these
days,” he said.

Lutzker, a behavioral psychologist, is a
strong advocate of the discrete trial training
method of treating children with autism.
Discrete trial training (also called applied
behavior analysis or ABA), was designed
by Dr. Ivar Lovaas of UCLA in the 1960s
and uses behavior modification with both
positive and negative reinforcement to
shape the child’s response. Other
developmental professionals prefer using
the newer “floor time” therapy. Created by
Dr. Stanley Greenspan, a psychiatrist at
George Washington University Medical
School, this teaching method is
child-directed — the therapist follows the
child’s lead in playing games and
performing activities that enhance the child’s
communication skills. Many autistic children
also receive speech and occupational
therapies.

Working out a successful treatment plan is
one of the many battles that parents such as
the Helfings find overwhelming at times.
Both their boys have different strengths and
weaknesses and each requires a program
that supports their needs. Therapy, including
a home-based ABA program for Nathan
and Greenspan sessions for both, often
takes up eight or more hours a day for each
child. Ironically, both Barbara and Sheldon’s
professional training makes them
well-suited to the task of raising children
with special needs; Barbara has a Master’s
degree in education (including a credential
in special ed) and Sheldon teaches
psychology at local community colleges.

Barbara said the hardest part is dealing
with family and friends who don’t seem to
grasp what life with autism is all about, the
constant toll taken on the family’s time and
emotions and finances as they research
every option for helping their sons. She tells
the story of a friend who called up in tears
because her daughter had missed out on
getting into a gifted class by two points on a
test. Barbara said it was hard not to laugh
because “I wish for one moment that Leland
or Nathan had a problem like that!”

“What it comes down to is our kids are in a
perpetual toddlerhood,” she said. “Their
mental age is not where their chronological
age is; that’s what makes it more taxing for
us as parents. Other parents spend a lot of
time talking about their kids’
accomplishments and what we talk about
may not seem like much. But the things
other people take for granted, we really
appreciate.”

The family has struggled to find their place
in the Jewish community. Currently they are
not affiliated with any synagogue. Barbara
said when Leland was a toddler she joined
a Mommy & Me class at a large
Conservative temple, but was disheartened
by the response of other mothers when
Leland finally attempted to speak.

“He was vocalizing, making these sounds
that weren’t quite words, but it was the first
time he had even tried to talk,” Barbara
said. “And I saw two mothers pull their
children away from him, like it was
contagious. Instead of applauding that this
child was finally speaking, they reacted like
he had a disease.”

To add insult to injury, when Barbara called
to tell the teacher she and Leland were
leaving the class, the teacher asked if she
could tell the other mothers that Leland was
a special-needs child unsuited to the
program. Barbara said the feeling she got
from the experience was that children who
were different posed a threat to the
reputation of the highly touted,
“academically enriched” program. The
rejection, she said, still hurts.

Sheldon is quick to point out that not all the
family’s experiences with synagogues have
been negative.

“There are some good programs out there,”
he said. “But the general population reacts
from fear — what you don’t know might hurt
you. The misnomer about autistic kids is
that they’re crazed and violent, when in fact
they are so locked inside themselves they
would not hurt anyone.”

Dr. Bryna Siegel, author of “The World of
the Autistic Child,” has seen many Jewish
parents during her tenure at both Stanford
and the University of California at San
Francisco. Siegel, who is Jewish, said the
emphasis on education and the high
expectations of parents and grandparents in
our culture makes it more difficult to accept
a diagnosis of autism.

“The problems Jewish families have in
coping with autism is by and large what I
see in most well-educated, upper
middle-class families,” Siegel said. “There
is a much greater sense of disappointment
in having a child with a disability as
opposed to a working-class family. And
there isn’t as much room in the Jewish
community for these children as, say, in the
Mormon community where they are seen as
a chance for family members to grow
spiritually through love and compassion.
Judaism really doesn’t have an outlook like
that.”

Siegel said that in some cultures where
large families predominate, having a
special needs child is less of a burden
because the work can be shared among
more people.

“But except for the Chassidim, Jewish
families are not having a lot of kids. For
those families, this child may be their only
one, and that can be hard,” she said.

The Los Angeles Jewish community has
been slow to respond to the recent surge of
families with developmentally delayed
children. Few programs exist to teach these
children Jewish culture and values. In the
San Fernando Valley, there are special
needs programs at Valley Beth Shalom,
Temple Judea and Kol Tikvah, but except
for VBS, these programs are limited to a
few hours one or two mornings a week. The
standards of admission for Jewish day
schools such as Abraham Joshua Heschel,
automatically eliminate many children with
disabilities, including autism. Other schools
will only take an autistic child if a one-to-one
aide is provided, which may be out of the
financial range for parents already pushed
to the limit by medical treatments.

The University of Judaism, however, recently
established a Master’s degree program for
people interested in working with autistic
and abused children, which will put more
knowledgeable, appropriately trained
teachers out in the Jewish community. For
those already in the field, the Bureau of
Jewish Education, at its recent Early
Childhood Education conference, hosted a
seminar on Autism and Aspergers for
educators along with several classes on
evaluating children for speech and language
delays.

But the Helfings’ best advice to other
parents of autistic children is this:

“Know your child, their strengths and
weaknesses,” said Barbara. “Know the law,
or hire someone who does. The truth is, in a
situation like this the playing field is not
even. To the degree you’re informed about
your child, the disorder, what resources are
available and about your rights is the
degree to which you will be able to help your
child succeed.”

Center Provides Hope for Autistic Children


As Tony and Barbara Miller* awaited the birth of their first child in 1990, they excitedly planned for the future by purchasing a large, family-friendly home in a suburb renowned for its school district. When their son Robert* was born — a striking child with olive skin and a halo of blond hair — they were ecstatic.

But by the time Robert was 18 months old, they noticed that something was wrong with their baby boy. He did not make eye contact and he did not care to be held. As he grew older, he refused to play with other children; rather, he sat by himself, repetitively rattling toys in front of his face. At home, “he threw things, hit and pinched and scratched,” his mother said. At pre-school, he pushed or lashed out at children who approached him. After just several weeks at the school, Robert was asked to leave. Worst of all, the boy was still unable to speak as he approached 3 years old.

His parents finally learned why: Robert suffered from autism, a social communication disorder caused by abnormal brain development and functioning. Tony, Robert’s father, had one mantra as he left his son for three months of training at the UCLA Neuropsychiatric Institute. “All I want him to be is toilet trained,” he prayed.

The low point of Tony’s life was visiting Robert in the locked UCLA facility on Christmas Day, he said. “Like many men, I don’t cry,” he said. “But it sunk in that I would never have a normal family relationship with my child; that he would never go away to college, never marry and have children.”

Today, however, Tony and Barbara have new hope for Robert. For the past year, he has been attending the Julia Ann Singer Center’s therapeutic classrooms at the Vista Del Mar School, a member agency of The Jewish Federation; the classrooms have recently placed special emphasis on treating autistic children. A luncheon Sept. 23 at the Beverly Hilton will benefit the center and its school program, where about half of the 15 students are autistic.

The Julia Ann Singer Center is a division of Vista Del Mar Child and Family Services, which began as The Jewish Orphans’ Home of Southern California in Boyle Heights in 1908. The Singer Center was originally founded as the Jewish Mothers’ Alliance in 1916; the outpatient facility became a division of Vista in 1982. Today, it serves children who are victims of child abuse, emotionally disturbed or have learning or developmental disabilities. There is a therapeutic school, a family therapy program and a child abuse treatment program, among other services, all on Vista’s bucolic Cheviot Hills campus.

What makes the center’s treatment of autistic children unique, said Center Program Manager Dr. Catherine Doubleday, is the family-oriented approach and the fact that the student-teacher ratio is about one-to-one. The goal is to reach children, aged 3 to 8, who, like Robert, cannot attend mainstream public school and often have no place else to go. Early intervention is crucial for such children, because at a young age the brain is most flexible, Doubleday said.

At the school, one emphasis is on social functioning — teaching children to respond to frustrations with words instead of the body. “All the things you take for granted that a child learns must be broken down and mapped out sequentially,” Doubleday said.

If a child grabs a marker from another child, a teacher might ask that child to stop and study the look on the other child’s face; to note the grimace, the clenched teeth. Then the teacher might model another way of securing the marker; the child is praised for any approximation of the appropriate response. “Besides motor and [pre-academic] skills, a lot of the curriculum is identifying facial expressions and feelings,” Doubleday said. “We concentrate on the face, on ‘What do you see?’ To stimulate language, we also do a lot of reading, and talking, talking, talking.”

Parents learn to take the techniques home by volunteering at least once a week in the classroom; they process their feelings and exchange information during a Friday parents’ group.

For many families, the results are dramatic. One mom was finally able to attend her annual family reunion with her two autistic sons, Doubleday said.

And the Millers report that Robert has become a different child. He is calmer; he knows the alphabet; he can speak in two- or three-word sentences; he can hold a pencil. “Before, my son would never even look up when I came home from work,” Tony said. “Now he looks up at me and says, ‘Hi Daddy.’ It’s a change that, for me, can’t be quantified.”

For more information on the luncheon, call (310) 202-0669, ext. 500.

* Not their real names


Community


Mori’s World

An 11-year-old boy creates a loving depiction of his autistic brother’s life

By Rabbi Bradley Shavit Artson

Diagnosis: Compassion

Through a unique program, UCLA Medical School students donate their time and care to disabled or ill children

By Wendy Madnick, Valley Editor

Lobbying 101

Federation activists from Los Angeles and the Valley spend a day in Sacramento

By Tom Tugend, Contributing Editor

L.A. 5758

B’nai David-Judea’s Renaissance

Rabbi Yosef Kanefsky’s bold innovations have brought the Pico-Robertson shul community-wide attention and new members

By Julie Gruenbaum Fax, Religion Editor

Community Briefs

The screaming, crying, and loss of emotional control is excruc-iating.

Mori’s World

An 11-year-old boy creates a loving depiction of his autistic brother’s life

By Rabbi Bradley Shavit Artson

“Mori’s Story: A Book About a Boy with Autism” by Zachary Gartenberg with photographs by Jerry Gay

Lerner Publications Company

“This is a story about my brother, Moriel. Moriel has autism. My parents gave him a Hebrew name which means ‘God is my teacher.’ I think they just thought the name was beautiful, but its meaning came true in a way they didn’t expect. Moriel teaches others that people with disabilities, such as autism, can accomplish many things. I think God wants us to understand that there are different kinds of people, and nobody’s perfect. Anyway, we call my brother Mori for short.”

So begins one of the most profound and compelling books I have ever read. This loving depiction of Mori’s life, written by his wise (and 11-year-old) brother, Zach, will open up a world that few people know about, much less seek to enter. What makes this fine book particularly compelling is that Zach has no ax to grind, no political battles to fight. Poised at the brink of his bar mitzvah, he has the acumen and insight of an adult, but he retains a child’s faith and honesty. There is no better voice to articulate the world of an autistic child.

Mori, Zach, and their sister, Fay, are the children of Rabbi Dov and Celia Gartenberg. Once of Los Angeles, the family now lives in Seattle, although Rabbi Gartenberg continues to participate in Camp Ramah’s family camp each August.

The Gartenberg family, formerly of Los Angeles and now of Seattle, in a photograph from “Mori’s Story.”

This book brings us into their family and into their home, as they work to provide a full and rich life for all of their children. Zach’s writing is a wonderful sign that they are succeeding.

But “Mori’s Story” is not saccharin or false. Without editorializing, Zach lets us in on the heart-rending struggles involved in raising a special-needs child. Zach writes: “Mori has to take special medicine so he can stay calm. When he doesn’t have his medicine, he has screaming fits and might bang his head on the floor. He also goes around wrecking things in the house throwing food, spilling toys, pulling down curtains. He especially likes to take apart mattresses and stuffed toys. You can imagine that this behavior is hard to live with, and it can get expensive.”

Any parent can imagine the torment of watching a child recede behind a disability that commonly shows no signs until the child is about 2 years old. The screaming, crying, and loss of emotional control is excruciating. I know because I, too, have an autistic son, Jacob. We used Zach’s book to read to our 5-year-old daughter, Shira, to help her understand (and give words) to her brother’s challenge. She was deeply moved by the book, wanting to read it several nights in a row.

When she got to the part of the book where the Gartenbergs were planning a year’s sabbatical in Israel, and they decided that they would have to leave Mori in a group home for children with disabilities, Shira burst out in tears. Her sorrow at the possibility of autism separating our family is precisely what all relatives of special needs children endure. Now, through Zach’s wise words, we have someone who has told Mori’s story, and our own.

But I don’t want to leave you with a sense that Mori’s life (and Zach’s) is one of relentless struggle to contain tragedy. To the contrary, what is wonderful about this book is that Zach sees his brother, not just his brother’s illness. And Zach loves his brother as a friend and companion.

So many well-meaning people offer sighs and sympathy, allowing the illness to obscure the wonderful person who lives with it. Zach’s book makes no room for such misguided sentimentality. He writes about their lives together, and all the family adventures they have together. And special mention must be made of the superb photographs of Jerry Gay, who has truly captured on film the joy and the caring in the Gartenberg family.

This is, above all, a book about two brothers and their family. Autism may set the context for their own unique adjustments, but it does not set the tone for their love. Human beings have a God-given capacity to rise above their struggles, to define themselves despite their limitations. Mori’s story is just such a triumph. Let Zach have the last word:

“Some people think that people with disabilities are not smart, but my brother is smart. He remembers everything you teach him. He’s always eager to learn and then to go out and play. I really love him.”

Everyone is Someone’s Jacob: What I’ve Learned From My Autistic Son

When I first found out that my own son Jacob was autistic, I had fantasies of him dying.

I imagined being rid of him, of starting over. I couldn’t face the fear and the pain of not knowing whether he would ever come out of his shell. I didn’t know if I would hear him speak to me. I did
n’t know what his future would be.

I feared that he would have to endure a lonely old age in which nothing would make sense, his mother and father would no longer be there for him, no one would appreciate or love him. That nightmare terrifies me still. And so in those first horrible months, I would toy with the idea of his death.

This happened four years ago, after my wife and I endured a difficult pregnancy. She was bedridden from 26 weeks and ultimately required an emergency Caesarian section that delivered our children six weeks premature.

Shira and Jacob were beautiful babies, and they developed beautifully. Then, somehow, in the second year, something changed and our Jacob stopped growing. Our little boy who had been developing just like his sister stopped. Shira continued to surge: mastering new challenges and delighting in her new abilities.

Jacob was still Jacob, but somehow he was pulling away, somehow sliding into some other world, behind some wall that we couldn’t penetrate. Our Jacob, who had been so vivacious and so enthusiastic, would play by himself for hours, compulsively repeating meaningless motions, endlessly plucking leaves or throwing pebbles, one after another.

His behavior wasn’t the only source of distance between us. Jacob’s words never came out. He wouldn’t talk. We took Jacob to a specialist for diagnosis. After a futile effort to get Jacob to engage in the diagnostic test, the doctor kept referring to autism. I felt as though the entire universe had caved in.

Since that time, our life has become a battleground.Our home is ground zero in our private war against autism. We are fighting for a beautiful boy who’s locked somehow inside himself, who needs to learn how to emerge. Every day is a struggle.The things that other parents don’t have to worry about, we worry about.

This article is not meant to be just another anguished parent venting in public. I’m sharing this, my pain, because of all of us carry pain and all of us bear disappointments. I want to share with you what my Jacob has taught me about life because what he has taught me is precious and applies to us all.

Jacob has forced me to reassess what is really important in the world, what it is that really matters in our loved ones. Those daydreams I had about Jacob’s death made me realize that the only possibility more terrifying than living with Jacob and his illness is the thought of living without him. His sweetness lights up my soul. When he looks at the Torah and smiles and says “Bye-bye Torah” at the end of the Torah service, something inside me glows.

With all of my fear of the future, with all of the suffering and uncertainty his autism entails, Jacob is a blessing as he is. Jacob has taught me that what really matters isn’t the IQ, although it’s nice. It isn’t accomplishments, although those are also beautiful.

But what’s really the core, what we can’t give up, what is the essence, is soul. What is the essence is sweetness and goodness and loving and caring. Our worth is not what we do; it is that we are. Every child is a blessing as they are.

I can see in my son a beautiful soul, a zisen neshomeh trying to express itself, and I see his sickness trying to shut him in. I see Jacob beating against the limits of his autism, struggling to emerge. I know my Jacob from the inside out, and I know that my Jacob is not his illness. But I also see people shying away from Jacob, confusing his illness for him and not seeing the beautiful boy but seeing instead a label, autism. Jacob isn’t autism and Jacob isn’t autistic. Jacob is Jacob. And he is like every other child, precious, and sweet, and beautiful if you can learn to address him in a way that he can respond to.

It takes effort. It takes starting with Jacob’s illness and working toward Jacob’s soul, so that his label is a tool, not an obstruction.

But if my son has taught me anything, it is that everybody is somebody’s Jacob.

And every Jacob has parents who, like me, pray that someone out there will be able to see their “Jacob” with love and with compassion. That some kind soul will look beyond the label and will care for their child with kindness, with warmth and with understanding.

Rabbi Bradley Shavit Artson serves Congregation Eilat in Mission Viejo. On July 1, he assumes the post of executive vice president of the Board of Rabbis of Southern California in Los Angeles.

 

Above, CORE volunteer and recent UCLA Medical School graduate Gina Johnson bonded with 9-year-old Tyler, improving his grades and disposition and helping Johnson step outside the insular world of medicine. Photo by Peter Halmagyi

 


 


 


 


 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


 


 


For more information on CORE

and

Family Friends,

call

Jewish Family Service

at

(818) 761-3447

or

(310) 825-9647

Diagnosis: Compassion

Through a unique program, UCLA Medical School students donate their time and care to disabled or ill children

By Wendy Madnick, Valley Editor

In an era when health care is managed by nameless, faceless bureaucracies and the family doctor exists only in memory, one medical institution is striving to inject a shot of humanity.

UCLA Medical School, in collaboration with Jewish Family Service of Los Angeles, is giving its students a unique opportunity to learn about what life is like for a child with a disability and his or her family. The Children’s Outreach and Relief Effort (CORE) program matches first- and second-year medical students with disabled or ill children (often those being treated at UCLA) or, depending on a family’s needs, with siblings.

The program not only provides the benefit of a “helping hand” to the family, but the medical students earn elective credit for their participation. Many students continue to participate even after they no longer receive credits, according to Shelley Fine, Project Social Worker for JFS/Valley Storefront.

“The main goal [of CORE] is to help the students understand the dynamics of how illness affects the whole family,” said Fine. “Here they are, receiving excellent medical training at UCLA, but they’re not always getting the human-interest side of it — how siblings often feel neglected and start acting out, or how a child’s illness puts a strain on a marriage. The main benefit is that the student doctors get to see a child as they are, instead of this walking diagnosis.”

For medical students, CORE presents a chance to step outside the insular world of medicine. For the parents of the “matched” children, CORE is simply a blessing.

Pat Gutierrez, 33, lives in Panorama City with her 9-year-old son, Tyler. Her older son, Ryan, 14, who has muscular dystrophy, lives in a group facility with other disabled children but comes home twice a month. Between her full-time job and caring for Ryan on alternate weekends, Gutierrez found she had less and less time for Tyler — and his behavior at home and school was deteriorating.

Then Gina Johnson, a CORE volunteer, entered their lives. Johnson and Tyler bond over McDonald’s hamburgers, rollerblading outings and get-togethers with her family, who treat him like a long-lost cousin. Tyler also regularly accompanies Johnson to the Panorama Baptist Church. His mom said his grades and disposition have improved significantly.

“Being involved with [CORE] has made such a difference for me,” said Gutierrez. “It means Tyler has religion in his life, and this extended family because of Gina. It gives me more time to be alone with Ryan when he comes home.”

For Tyler, whose young life has been spent in the shadow of his brother’s debilitating illness, life no longer seems so hard.

“Before I met Gina and started going to church, I wouldn’t listen. I was angry because I didn’t get to see my mom a lot,” he said. “But now I like learning math in school and reading ‘Goosebumps’ books, and doing stuff with Gina.”

It is apparent, watching Tyler with his new friend, that the feeling is mutual. Johnson, 24, graduated from UCLA Medical School on June 5. Her experiences with CORE contributed to her seeking a residency at Children’s Hospital in Oakland.

“I’m going into pediatrics, where it’s likely I’m going to see children like Ryan and Tyler, so this will definitely help me in my practice, treating chronic illnesses,” she said. “I also think everything that helps me grow as a person will help me grow as a doctor.”

In addition to providing experience and elective credits for students, CORE serves to educate the parents about medical personnel.

“They get to see these doctors sitting down and playing with their children, and it makes the medical people seem more human,” said Fine.

CORE is modeled after Family Friends, a program devised by the National Council on Aging that has helped seniors become more involved with their community. Through a grant by the Robert Wood Johnson Foundation, Family Friends now has 40 chapters across the United States, including the one run by JFS in Los Angeles and the San Fernando Valley.

This past school year, there were 25 med students enrolled in CORE, and 54 seniors and others involved in Family Friends. All volunteers are required to take a special training course provided by the JFS before being matched with a family. In addition, all volunteers for CORE and Family Friends undergo background checks, fingerprinting and health certification (to guard vulnerable children against communicable diseases). Although many of the volunteers and families involved are Jewish, this is not a requirement to participate.

Dr. Etan Milgrom, UCLA’s liaison for the program and an associate professor in the department of family medicine, sees CORE as part of a trend at UCLA and other medical schools to sensitize students to patients’ experiences. For example, in teaching his physical-diagnosis class, Milgrom not only has students write a work-up of the patient’s ailment but has the future doctors accompany the patient on any tests that need to be performed.

“Because physicians today often find themselves with less time to be with patients, there’s even more of a need for them to recognize these issues and to be compassionate,” Milgrom said.

The professor said that he would like to see CORE not only at the student level but as a part of every residency program, including at UCLA Medical Center.

“During medical school is a good place to start, but it’s as a resident where you really develop as a physician,” Milgrom said.

 

Members of the Los Angeles con
tingent that met with state lawmakers on Monday.

Lobbying 101

Federation activists from Los Angeles and the Valley spend a day in Sacramento

By Tom Tugend, Contributing Editor

For the two dozen Jewish Federation activists from the San Fernando Valley, Monday’s mission to meet and lobby state legislators started even before they reached Sacramento.

Waiting in line to catch the 8 a.m. flight from Burbank were two influential assemblymen.

One was Wally Knox, (pictured above) already on the group’s later agenda. The other, an unexpected bonus, was Assembly Speaker Antonio Villaraigosa, who greeted some pals from a previous mission to Israel and immediately scheduled an impromptu meeting for the afternoon.

An hour later, in the state capital, the Valley group, led by Scott Svonkin, linked up with an equal number of lay and professional leaders from the Los Angeles Jewish Community Relations Committee, who had enplaned at LAX, plus participants from Hadassah and the American Jewish Congress.

Also on hand were another 50 people from San Francisco, Sacramento and San Jose, gathered for the day by the statewide Jewish Public Affairs Committee (JPAC).

For newcomers and veterans of the annual mission, the long day proved to be, in roughly equal parts, a morning crash course on the workings of the legislature, an afternoon introduction to the theory and practice of citizen lobbying, and after-hours socializing with lawmakers and their staffers.

The day’s ambiance, to a first-time participant, was that of an amiable two-way courtship, with the visitors politely pushing their agenda and the legislators well aware of the Jewish activism and votes in their districts.

“They know that we do not just talk the talk, but also walk the walk,” said mission member David Novak, of Santa Monica.

The general mellowness was leavened by Senate Republican whip Jim Brulte, the keynote luncheon speaker. His frank appraisal of citizen lobbyist-politician interaction included such mordant observations as, “We spend as much time reading the material you give us as you spend reading political appeals at election time.”

In the afternoon, the Los Angeles/Valley contingent broke up into nine four-person teams for lobbying sessions with senators and assembly members.

Four key issues, as selected by JPAC, dominated the meetings, with each issue presented by a different team member.

* Opposing the repeal of the existing license fee for cars, a politically attractive measure pushed by Gov. Wilson. JPAC is opposed because the repeal could dry up funds to cities and counties for health, mental-health and social-service programs.

* Support for the Multipurpose Senior Service Program, which would provide additional funds for the state’s rapidly growing number of elderly citizens.

* Support for the Religious Freedom Protection Act, which would protect religious liberty as a civil right, such as the right of government workers or school children to observe Shabbat or wear yarmulkes.

* Support of a measure by Assemblyman Knox to force European insurance companies doing business in California to provide to a state Holocaust Insurance Registry full information on policies taken out by Holocaust victims and survivors .

In almost all cases, and with only minor reservations, lawmakers agreed with the mission’s agenda, though it must be noted that few teams met up with the legislature’s more conservative members.

The reason was not partisan pre-selection but the fact that team members were generally matched with representatives from their own areas.

“It so happens that most Los Angeles-area legislators are Democrats,” said Adine Forman, government relations director of the Los Angeles Federation’s JCRC, who organized the mission with the Valley’s Barbara Creme.

Summing up, JCRC Executive Director Michael Hirschfeld cited the mission’s two chief values:

“There is no better way to get to know and influence legislators than face-to-face meetings, whether they always agree with us or not,” he said. “The mission is also a great way to involve Jewish leadership and volunteers in substantive projects.”

Hirschfeld believes that the missions have been so effective that he, and incoming JCRC Chair Howard Welinsky, are considering up to four to five missions to Sacramento each year, and perhaps expanding the program to include Washington.



L.A. 5758

B’nai David-Judea’s Renaissance

Rabbi Yosef Kanefsky’s bold innovations have brought the Pico-Robertson shul community-wide attention and new members

By Julie Gruenbaum Fax, ReligionEditor

The first time a woman carried a sefer Torah through B’nai David-Judea’s cavernous main sanctuary, synagogue leaders waited with bated breath for the backlash.

Nothing.

After the first meeting of the women’s prayer group, Rabbi Yosef Kanefsky (above, with congregants, and below) braced himself for a major uproar.

Barely a ripple.

And so it has gone, as the 34-year-old rabbi gingerly implements innovations at B’nai David-Judea, which celebrates its 50th anniversary at a banquet this month.

In the two years since Kanefsky moved with his wife and two sons from Riverdale, N.Y., to lead the congregation on Pico Boulevard, west of Robertson Boulevard, about 60 young families and singles hav
e joined the now-250-family synagogue — an almost unheard-of membership boost.

Scores of people — from the right and the left, the newly observant and those born into the traditional fold, accomplished screenwriters and struggling graduate students — spend Shabbat morning in the main sanctuary, a former theater with a vaulted ceiling, gold trim and red carpet. The vast hall becomes surprisingly intimate as voices young and old join in prayer and song.

Kanefsky, who looks no older than 18, approaches Judaism with an open mind, welcoming interdenominational ties and exploring all the options halacha has to offer. It is an attitude that has often landed him in the spotlight. While his philosophy engenders suspicion among many in an Orthodox community that is generally moving to the right, it has also generated a significant following.

People are attracted to “the idea of having a community that is intellectually open, that invites women’s participation, that is politically not pigeonholed and one where people take their observance seriously, with Shabbat, kashrut and taharat hamishpacha [family purity],” Kanefsky says, comfortable in his near-trademark short-sleeve, tieless shirt. “It’s our niche.”

One of Kanefsky’s more controversial moves has been to open up women’s access to prayer and Torah. Every Shabbat morning, a woman carries the velvet-cloaked scroll through the women’s section. Bat mitzvahs, like their male counterparts, deliver a drash, a speech, after services. They can also celebrate at Shirat Chana, a year-old monthly prayer group for Shabbat Mincha, afternoon services, where the Torah reading is chanted from a scroll — a first for the Los Angeles Jewish community. Services have attracted upward of 100 women from shuls across the community.

“There were people who thought the sky would fall as soon as women started carrying the sefer Torah, the sky would fall when Shirat Chana opened, and it just hasn’t happened,” says Kanefsky.

While Kanefsky’s standing at the Orthodox Rabbinic Council of California has been jeopardized by his support for women’s prayer groups, it appears that controversy will be averted, as moves toward reconciliation are under way.

Some quietly attribute the peace to Kanefsky’s appeasing personal manner. In fact, only one family left the shul when Kanefsky took over. He has also created an atmosphere of mutual respect between the younger crowd and the shul’s builders.

For most of its life, the shul was a traditional, mechitza-less congregation under the leadership of Rabbi Philip Schroit (pictured above). Just before he retired in 1988, Schroit installed a mechitza, as he looked toward a more vibrant future in the increasingly Orthodox neighborhood. (Schroit will be honored at the shul’s 50th-anniversary banquet, at which hundreds are expected to come to pay tribute to the rabbi who left his mark on many lives across the community.)

Soon after the partition between men and women went up in the main sanctuary, the congregation lost two-thirds of its members. But a few years later, that mechitza made it possible for Rabbi Danny Landes to take leadership of the congregation; he brought with him 50 young families from Beth Jacob’s Upstairs Minyan.

Landes’ departure in 1995 was a blow to those members and the many more who had joined.

“When the board decided to hire Kanefsky, it was with the feeling that he would eventually revive the synagogue. He had the dynamism and ability to do that,” says Robert Smith, president of the congregation. “Obviously, he succeeded.”

But Kanefsky isn’t so quick to admit victory.

“I’m never happy with where we are,” he says. “If anything, where we are just whets our appetite to strive even higher.”

Still, he admits that he is thrilled that shul has been able to affirm and reclaim the label “Modern Orthodox.”

“We seek to be unashamedly and unapologetically who we are and, at the same time, earn the respect and admiration of those to our left and to our right, and we don’t see this as a contradiction.”

B’nai David-Judea will celebrate it’s 50th anniversary, Israel’s 50th birthday, and 50 years of service by Rabbi Philip Schroit, on Sunday, June 21, at the Beverly Hilton Hotel. For more information, call (310) 276-9269.

Also at B’nai David-Judea…

B’nai David-Judea finds itself on the cutting edge yet again, this time hosting a Shabbaton with Julie Stern Joseph, congregational intern at Lincoln Square Synagogue in Manhattan. Joseph made headlines this year when she became the first woman to take on a professional leadership role in an Orthodox synagogue.

On Saturday, June 13, following morning services (about noon), Joseph will address leadership opportunities for Orthodox women. Later that day, at 5 p.m., she will join Shirat Chana, the women’s prayer and study group, to lead Torah study.

Saturday, June 13, 8906 W. Pico Blvd. (just west of Robertson Boulevard). For more information, call (310) 276-9269.

Friday Night Live

For young people with, at best, tired memories of main-sanctuary services, Sinai Temple is offering a second chance at shul. Under the leadership of Rabbi David Wolpe and musician Craig Taubman, Friday-night services will come to life with singing, dancing and learning. A similar service for young Jews at New York’s B’nai Jeshurun attracts about 1,500 people a week. Wolpe and Taubman are hopeful that they can tap into the same yearning for warmth and dynamism in a direct religious experience. Friday Night Live will be held the second Friday of every month.

The first Friday Night Live is tonight, June 12, 7:30 p.m., at Sinai Temple, 10400 Wilshire Blvd., in Westwood. For more information, call (310) 474-1518. — J.G.F.

M
ystical Journeys

As Californians make plans for vacations this summer, congregants at Beth Jacob of Beverly Hills are thinking about traveling inward, with four lectures on Jewish mysticism from one of Israel’s experts. Rabbi Ariel Bar Tzadok of the Science of Kabbalah Institute will speak on comparative Kabbalah, prophetic meditation, healing and Israel and messianism.

Monday, June 22- Thursday, June 25, 7:30 p.m. at Beth Jacob, 9030 West Olympic Blvd. (corner of Doheny); $10 per lecture or $30 for all four; (310) 551-1901.

Community Briefs

Off the Rack

Aurora Gamboa, a fourth-grader at Franklin Elementary School in Los Angeles, was thrilled with the plastic sunglasses she received at the first annual Jewish Federation/Camp Max Straus Clothing Distribution Day last year. She is even happier to be returning to the camp for a second year.

“It was like being out in the West,” she said of the camp, which is located on 112 acres in the rustic Verdugo Hills area of Glendale. She learned to horseback ride and swim and became an expert archer.

The second annual Clothing Distribution Day took place last Sunday at the Westside Jewish Community Center. About 700 children and their families showed up to receive donated clothes, which included shirts, shorts, sweat shirts, socks, hats, towels and laundry bags. A total of 1,000 youngsters will receive the clothing.

The event, co-sponsored by J.C. Penney, Lee Thomas and La Mode, was supported by the Federation’s Fashion Industries Division, some of whose members passed out bundles at the three-hour event.

Jewish Big Brothers, a Federation beneficiary agency, owns and operates Camp Max Straus, a 60-year-old coed residential camp that primarily serves underprivileged children.

“Our goal is to touch these children in a way that can give them hope and aspiration to do something with their lives that is more than they could have done before,” said Brian Weitman, president of Security Textile and chair of the event.

Also on hand Sunday were actors Megan Parlan and Chad Gabriel of NBC’s “Hang Time.” “I remember how great it felt to get free stuff when I was a kid,” said Gabriel, who is a Jewish Big Brother himself.

For more information on the camp or the reunion, contact Jewish Big Brothers at (213) 761-8675. — Ruth Stroud, Staff Writer

Camp Compassion

“Summertime, and the living is easy,” goes the old Gershwin tune. But for many children with developmental disabilities, summer isn’t an easy time. Other youngsters go to camp, but kids with autism, cerebral palsy, mental retardation and other disabilities usually don’t have the opportunity — at least in Los Angeles. But, now, some of them will. A new day camp for children with special needs — which its backers claim is the West Coast’s first — is being launched by the Etta Israel Center, a Los Angeles organization that serves the educational and social needs of children with disabilities. Camp Avraham Moshe will operate from Aug. 10 to 14 for girls and from Aug. 17 to 21 for boys. Director Avi Stark hopes it will expand from there.

The camp will offer usual recreational fare, such as swimming, horseback riding, hiking and a Disneyland trip, all in a Jewish setting. Because of the need for individual attention, the ratio of counselors to campers will be about 2 or 3 to 1.

“Traditionally, kids with developmental disabilities have been excluded from regular Jewish day camps,” Stark said. “[Camps] don’t have any expertise or interest in providing what these kids need. We’re filling the gap.”

The camp is sponsored by Rabbi Hershy Ten and his wife, Blimy, as a tribute to their son, Avraham Moshe, who died last year at the age of 12 after a long illness. “Children, regardless of their abilities, should have the opportunities that all children have,” said the rabbi, who is president of Jewish Healthcare Foundation-Avraham Moshe Bikur Cholim. “Unfortunately, there was no camp available for [my son]. If he’d had a camp, I’m certain, without any reservation, that it would have enhanced his life.”

A total of 25 girls and 25 boys will be admitted. The camp will take place on the campus of Maimonides Academy in Los Angeles, where Etta Israel already runs a program for children with special needs.

For more information, call the Etta Israel Center at (310) 285-0909. — R.S.

‘Pillars of Memory’

Six Holocaust survivors who came to this country with little or no money and achieved success beyond their wildest dreams were honored last Monday evening by the United States Holocaust Memorial Museum at a special dinner at the Beverly Hilton Hotel.

Hundreds attended the moving tribute, which featured keynote speaker Abba Eban.

Max Webb, Arnold Lorber, Dr. Fred Kort, Sigi Ziering, Leslie Gonda and Nathan Shapell — all of whom will be profiled in next week’s Journal — were recognized as “Pillars of Memory” by the museum, which raised $7 million through the event. — Staff Report

Summer Session

For more than a decade, educators from all parts of the Jewish world have flocked to the University of Judaism for its annual Summer Institute. Some come from as far away as Israel, Australia, Russia and the British Isles to enroll in five days of intensive course work. They go home with two units of university credit, as well as a sense of having acquired new, practical knowledge that can immediately be put to use in a classroom setting.

This year’s institute, which runs from June 28 to July 2, promises to be the biggest ever. The affiliated Whizin Seminar in Jewish family education — catering to delegates from day schools, religious schools, and community agencies — is already full to capacity. Other 25-hour courses (on such topics as prayer, Hebrew
instruction and “Educating B’nai Mitzvah and Their Families”) are filling up fast. So interested teachers (and laypeople with a yen for Jewish learning) should contact the UJ about openings in specific courses. “For those in the trenches of Jewish education, the institute can be a morale booster. By the end of the week, there’s a feeling of camaraderie, a feeling that we’re in this together,” said program administrator Lois Rothblum.

For information about the UJ’s Summer Institute for Educators, call Rothblum at (310) 476-9777, ext. 240, or Jill Lasker at ext. 296. — Beverly Gray, Education Editor

Providing a Helping Hand

For Los Angeles’ 50,000 Russian-speaking Jewish immigrants, Alla Feldman is a bridge between the past and the future.

Feldman, who, for six years, has worked jointly for the Bureau of Jewish Education and the Federation’s Council on Jewish Life, accepts as her personal mission the welcoming of new arrivals from the former Soviet Union into the local Jewish scene.

Feldman, who hails from Kishinev, Moldova, busily racks up grants designed to introduce other Russian-speaking émigrés to religious Judaism.

Through a new $8,000 grant from the Council on Jewish Life, she has begun flying in Russian-speaking rabbis to stage weekend-long Shabbat experiences for young adults.

A second grant (from the Federation’s Western region) provides monthly rosh hodesh events for women, and a third (through the Metro division) establishes outreach activities for singles.

Teaming with Jewish Big Brothers, Feldman has also devised an after-school program at Adat Ari El, where elementary-school children can participate in Jewish educational opportunities as well as special-interest groups.

And she has invented a floating “coffee house,” which encourages high school students of Russian background to learn and kibitz together.

An annual event for the indefatigable Feldman is the massive community seder co-sponsored with the Association of Soviet Jews and attended by some 400 local Russian-speakers.

After one seder, a woman approached Feldman with tears in her eyes and said, “I’m 60 years old, and it’s my first time I feel I’m Jewish.”

For information on programs designed for Russian-speaking Jewish immigrants, call Alla Feldman at (213) 761-8618. — B.G.

Standing, from left, Max Webb, Arnold Lorber, Dr. Fred Kort, Sigi Ziering, Leslie Gonda and Nathan Shapell. Seated from left: Anna Webb, Anita Lorber, Barbara Kort, Marilyn Ziering and Susan Gonda. Photo by Robert Lurie

Etta Israel Center’s new camp for children with special needs is the West Coast’s first, backers say. Above, Etta Israel Center students.

Brian Weitman, left, chair of The Jewish Federation/Camp Max Straus Clothing Distribution Day, outfits one of the kids at the event.