Monday, October 27, 2008

Adapted bar mitzvah gives disabled teen his ceremony

From The New York Times Long Island section:

CHAPPAQUA, N.Y. -- In the beginning, Brian and Jaclyn Rattner were focused on what their oldest child, Jarrett, could not do.

He could not talk, could not walk, did not play with toys, did not take to toilet training, missed most developmental milestones. Hoping for a diagnosis and cure, they took him to research centers at Harvard and Yale. Thinking it might be some rare genetic disorder like Tay-Sachs, which disproportionately affects Ashkenazi Jews, they had his blood shipped to Israel for analysis, and flew to England to meet with more specialists.

Ten years ago, at age 3, he was given a diagnosis of Angelman syndrome, which is characterized by mental delays, jerky body motions and a good deal of smiling and laughing — Jarrett has a sweet disposition. “But then they undiagnosed him,” Mr. Rattner said. “They didn’t know what it was, but it wasn’t that.”

And so the Rattners began focusing on who Jarrett was and what he could do. When he wanted a ball, he would pound his chest until he got it. “Sometimes, he wants to communicate so badly, you can hear him from the other room pounding his chest,” Mr. Rattner said. “There’s a lot of emotion there.”

He is good at making eye contact, and his mother noticed that if she asked what he wanted for lunch — turkey? tuna? chicken? — he would say yes by blinking his eyes and then holding them closed an extra second. “Figuring out his signs, it’s like watching a third-base coach,” said Mr. Rattner, who’s a lawyer.

“When you’re dealing with Jarrett, you’re dealing in current time,” he said. “You can’t say, ‘This is what we’re doing three days from now.’ You can’t discuss what you did a week ago. It’s an interesting way to live. We just dwell on each day right now. There’s a lot of pressure to make each day a great day.”

Jarrett has his passions. “He treats every meal like his last,” said Mr. Rattner. “He doesn’t understand more food is coming. He eats with gusto. If I’m eating something he wants, he’ll bang his chest. He always seems to want what I’m eating.”

He won’t allow anything on his head — no hats, no headphones, no iPod earphones — but he loves music, and if he sees a musician, insists on touching the instrument to feel the vibration.

Living in the now, he doesn’t hold grudges. As most children become teenagers, they distance themselves from their parents; Jarrett continues to love his unconditionally. “He’s thrilled to see me every morning,” Mr. Rattner said. “I turn on his light, he wakes up, he’s smiling. He reaches up to grab me around the neck with his left hand, pulls my face to him, and with his right hand, he sucks his thumb.”

After Jarrett, the Rattners said they took every genetic screening test available and have had three more children, making for an incredibly full life. But they’ve always tried to hold to a vow they made to Jarrett. “We promised our son at a young age, whatever it takes for him to have a happy and satisfied life, we will do,” Mr. Rattner said.

As Jarrett approached 13, they wondered, could he be bar mitzvahed? Should he be bar mitzvahed? Jarrett could not do the traditional haphtara reading; he couldn’t even place the cover back over the Torah on his own.

“We wanted to have some bar mitzvah — he deserved it,” said Mrs. Rattner, who stays home to care for the children. “We just wanted to be sure it was meaningful to Jarrett.”

The Rattners belonged to a Reform temple and consulted two Reform rabbis. “They were very nice,” said Mr. Rattner. “ ‘Whatever you want, you dream it, you do it, sky’s the limit.’ ”

“It’s not what we wanted to hear,” said Mr. Rattner. “We wanted to hear, ‘This is what we did before and what I can offer spiritually to Jarrett and those around him.’ We were trying to translate Jarrett to our family and friends.”

In 2006, the Chabad Lubavitch, Orthodox Hasidim, opened an education and mission center in nearby Armonk. Mr. Rattner consulted the rabbi there, Yosef Butman. “He explained that kids so handicapped are actually on a higher plane than you or I,” Mr. Rattner said. “We’re put on earth to perfect ourselves, and most of us have so much to do. But there’s not much they can do, they’re nearly complete. A couple of little tweaks and they’re ready to meet God.”

The Rattners are not religious. Two years ago, when Mr. Rattner was 42, he had open-heart surgery. “I spent two hours on a lung-heart machine. You do a lot of thinking.” An afterlife? “My feeling was you pass away and you’re gone,” Mr. Rattner said.

Still, he said, “it’s fascinating that someone as imperfect mentally as my son is, that he is considered to be way up there. That touched us. No one had ever said that about my son. You occasionally like to hear good things about your son.”

Living in this wealthy suburb, the Rattners have seen their share of $100,000 bar mitzvahs. “Vodka flowing from fountains, ice sculptures, caviar tables, crazy Broadway show themes,” Mr. Rattner said. “Our only theme was going to be Jarrett.”

Last Sunday, they squeezed 60 chairs onto their patio. Rabbi Butman explained that for the 10 minutes the Torah was opened, as is the Orthodox custom, men and women had to sit separately. But instead of putting a wall or curtain between them, he’d brought along a half dozen tasteful potted plants that he placed down the center aisle. Except for prayers, everything was in English. A Hasidic student read Jarrett’s haphtara. Eli Lipsker, a legendary Hasidic musician, played traditional Jewish songs on the electric organ.

Jarrett, the hater of hats, kept pulling off his prayer cap, but family and friends kept putting it back on. Jarrett’s two younger brothers, Jacob, 9, and Jordan, 7, spent most of the time running around the yard with their cousins, but Jarrett’s little sister, Julia, 3, sat in a baby carriage, attended by an aide; despite genetic screening, her parents say, she appears to have whatever Jarrett has.

The service was quick. Jarrett was wheeled to the Torah, helped by family to touch the Torah and, at the end, to cover the Torah. Rabbi Butman spoke of “a bar mitzvah where we get a chance to look at the big picture,” and Mr. Rattner mentioned “learning to accept Jarrett exactly as he is.”

Mostly, it was music and dancing. The men danced in a circle around Jarrett. At one point, Mr. Rattner hoisted his son from the wheelchair, held him up from behind, and the two swayed together to the Hasidic classics.

Afterward, they drove down the street to the Kittle House restaurant. There was no vodka from fountains, but there was a single-layer chocolate cake — Jarrett’s favorite — and lots of good food. The bar mitzvah boy tasted his first hot apple cider and drank with gusto.

Guests kept saying they’d never seen a bar mitzvah like it.

“When everyone started dancing around Jarrett, that’s when I felt a little emotional,” Mrs. Rattner said.

I saw you crying, Mom, you were crying!” yelled 7-year-old Jordan, and, laughing, he ran off to tell his cousins.