Boston Globe Article: Faith in a nonverbal world

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Boston Globe Article: Faith in a nonverbal world From: susan berger

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By a Noonan Globe Staff / June 1, 2008

NEWTON - Ten or 15 years ago, Krane probably would not have

received this warm bar mitzvah welcome into the Jewish community.

more stories like this

Josh is autistic and nonverbal, so the traditional Jewish coming-of-age

ceremony for 13-year-old boys and girls - more than hour of prayer, song,

and ancient ritual performed in Hebrew, requiring years of preparation and

study - would have been out of the question.

The Chestnut Hill teen, one of a set of triplets, might have known the

ritual only through the experiences of his brother, , and sister,

, who celebrate their own big day later this month.

But times and technology have changed.

Last week, Josh came to the Torah himself for the saying of the Sh'ma, a

Hebrew declaration of faith and allegiance to God, and D'var Torah, a

commentary on the Torah. It was all done with a 21st-century technological

twist - a PowerPoint presentation narrated by his siblings.

Gathered in a classroom at Hebrew College in Newton were about 50 relatives,

friends, and classmates from a Newton-based program, Gateways: Access to

Jewish Education, which offers religious training to more than 145

learning-disabled children.

It wasn't the first bar mitzvah Gateways has helped organize for a student,

but Josh's celebration offered unique challenges. His parents, Krane

and Maureen Connolly, both physicians, had initially hoped their triplets

could celebrate bar mitzvah together at their home synagogue, Temple Israel

of Brookline.

But Josh - who is extremely sensitive to distraction or breaks in his

regular routine - found the synagogue setting too overwhelming, and refused

to participate in practice sessions there.

So that's when Gateways decided to " get creative, " scheduling the bar

mitzvah for a Thursday afternoon at the same time and in the same classroom

where Josh attended classes for the past year, said the program's executive

director, Arlene Remz. The same tutors and classmates he'd come to know

would be in attendance. Another familiar face, Hebrew College rabbinical

student Hannah Gershon, would officiate, and Gateways program coordinator

Mager would guide Josh in leading the congregation in prayer - with a

little help from a laptop.

There was not a dry eye in the house as the ceremony progressed. Josh's

non-Jewish grandfather, Connolly, burst into happy tears while

reading words from " The Priestly Blessing " in English: " My God smile upon

you and give you peace. "

" This is really momentous to us as a family, " said a beaming Maureen

Connolly to the assembled guests. " It is such a proud moment, and not just

for what happened today, but the process and Josh learning everything that

has brought us here. "

The room filled with applause - something that can be frightening to

children with severe autism - but Josh looked pleased and proud, well aware

that he had accomplished something

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That evening, he returned home to the residential program for special-needs

children at the Evergreen Center in Milford, but not before a joyous

celebration under blue, green, and white balloons in the college atrium,

with kisses and gift envelopes from dozens of well-wishers.

Josh's bar mitzvah may have been nontraditional, but it hit the high points

of the ancient ritual, including the prayers, opening the ark, and removing

and reading parts of the revered Torah, or Jewish scripture.

" We tried to be as a respectful of tradition as possible, " Remz said.

Conservative and Orthodox Jews would traditionally consider Thursday

afternoon an inappropriate time to read from the Torah, but keeping the

ceremony to the confines of Josh's normal study schedule was crucial to his

success, Remz said. Josh cannot read extensive sections of Torah aloud, but

he can " press the button that would tell everyone his story, " she said.

Josh is the third Gateways student to use a PowerPoint presentation in a bar

mitzvah. The other two were students with cerebral palsy who celebrated at

their home synagogue, Temple Emanuel in Newton. The temple forbade the use

of technology on Shabbat, but welcomed the children during Monday morning

services. Empowering youths with disabilities to take charge of their

spiritual life depends on having the bar mitzvah led by the children, not

parents, said Remz.

" People assume kids will be passive participants, just because a new way

isn't within anyone's realm of expectation yet, " she said. " But when people

see what's possible, there's no limit. "

and Bittner of Newton helped create some of the Gateways

program's bar mitzvah curriculum after finding limited educational options

for their sons, Noah and , who both have autism.

" Families were left out, " said Bittner. " You might be told to

tutor your kids at home. But we wanted a group experience. Our kids wanted

what all kids wanted - a group of friends, a party, and the community

gathered around them. "

Isolation, and even ostracism, has been a sadly common theme among families

of disabled children who want to become part of a religious community, said

Bill Gaventa, a minister and director of community and congregational

supports for the M. Boggs Center on Developmental Disabilities,

part of the Wood Medical School of the University of Medicine

& Dentistry of New Jersey.

According to news reports, a controversy broke out last week among world

Catholic leaders after a Minnesota priest obtained a restraining order

against a severely autistic boy whose disruptive behavior upset and

frightened other members of his parish.

Things do seem to be changing, though, said Gaventa.

" We are seeing people in all kinds of congregations use new strategies and

technologies to find ways around obstacles, " he said.

The largest question for many church leaders had been whether

learning-disabled children could understand the principles of First

Communion, confirmation, and baptism, and make a conscious choice to accept

Jesus Christ as their savior - a fundamental requirement for many Christian

denominations.

On the other hand, Catholic priests wondered, " How do we know that this

person can take the wafer and know what it means? " Gaventa said.

In the past, some religious leaders actually refused to perform rituals for

disabled children, or steered families to private, truncated versions of

important ceremonies to pacify them, he said, but in recent years, there

seems to have been a trend toward full-scale - if somewhat nontraditional -

public ceremonies.

One girl with very limited verbal skills in New Jersey recently completed

her Unitarian Universalist coming-of-age project via PowerPoint, and " blew

people away. She was just beaming with pride, " said Gaventa.

Another nonverbal boy was required by his synagogue to say certain bar

mitzvah prayers, so the temple trained a video camera on his lips as he

shaped the words, allowing the congregation to watch on a big screen.

" People are realizing that just because someone has a mental disability, it

doesn't mean we don't try to teach them as best we can about God, " said

Gaventa.

Making room for children with special needs in spiritual communities has

even become a hot cultural topic. A new documentary about a Philadelphia boy

with Down syndrome preparing for his bar mitzvah, called " Praying with

Lior, " was a surprise hit on the independent film circuit last year, and won

a Boston Jewish Film Festival honor. It is playing at the West Newton Cinema

through Thursday.

New York filmmaker Ilana Trachtman said she's had a staggering reaction to

her documentary, sometimes hundreds of e-mails per day.

" I think it was a new perspective on what welcoming someone into a community

is really about, " she said. " His story tests our preconceived notions about

human potential and abilities. "

Matters of Faith is a series of occasional articles examining religious life

in area communities.

*a Noonan can be reached at enoonan@....*

© Copyright 2008 Globe Newspaper Company.

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