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.

Sibling Rivalry

I have three sisters, two older and one younger. My youngest sister, Debbie, was born when I was 8 years old. In the months leading up to her birth, I remember clearly the anxiety I felt over the possibility that it might turn out to be a boy and I might end up with a brother.

I suppose most 8-year-old boys would be thrilled at the possibility of having a younger brother to play with, boss around and teach the important ways of boyhood. So I must not be like most young boys. For months I had been telling my parents that if my mother gave birth to another boy, I was moving out and leaving the family! I was definitely not up for any competition in the boy department of my family — sorry, that job was already taken.

So, when the fateful day arrived on Oct. 9, 1957, I recall the anxiety and anticipation with which I greeted the arrival of my yet-to-be-known sibling.

I was sitting in class when a call came in asking that I be sent down to the principal’s office. I knew immediately it must have something to do with the impending birth of my sibling, so I raced down to the office, where I found my father waiting for me and my sister Candy, who was in another class at the same school. When, with a big smile, our dad informed us that we had a new baby sister, I was thrilled and couldn’t wait to welcome Debbie into the family.

But as the years went by, reality set in, and I became convinced every time my parents let Debbie do something that they would never have allowed me to do at the same age, that it must mean they loved her more — and I was jealous.

I even recall teaming up with an older sister to bring our “grievances” to the attention of our parents so we could enlighten them as to how unfair they were being and how unequally we were being treated. And I remember how deep the feelings could be.

So when I read this week’s Torah portion reminding us about the intense sibling rivalry between Jacob and Esau, and how fearful Jacob was of meeting up with his brother once again, knowing how he had abused and mistreated him, I thought back with great sadness on my own misplaced childhood jealousies and insecurities.

The fact is that too often parents do love their children differently, showing preference for one over the other and letting them know in a hundred different ways that no matter what they do, they will never really measure up. I see it in my work as a rabbi all the time, and every time I do it breaks my heart, knowing how fragile children’s egos really are.

In Vayishlach, we catch a glimpse of something remarkable, something redemptive in the human soul. When Jacob finally meets up with Esau bringing along his childhood fears and vulnerabilities, “Esau ran to greet him. He embraced him and, falling on his neck, he kissed him; and they wept” (Genesis 33:4). And Jacob, startled and awed by the open love of his brother, sweeping away decades of hurt and fear, replied, “To see your face is like seeing the face of God” (Genesis 33:10).

Would that we could all be as generous of spirit as Esau. Perhaps our real challenge from the Torah this week is to embrace the spiritual gifts of both brothers — from Esau to learn generosity of spirit, and from Jacob to look into the eyes of everyone we meet and have the vision to see the face of God.

Sibling Rivalry

It’s a cautionary tale for parents, and one whose message will resonate with children: the new DreamWorks telling of the biblical tale of Joseph in the animated direct-to-video film “Joseph: King of Dreams.”In a style similar to that of “The Prince of Egypt,” which told the story of Moses, “Joseph: King of Dreams” imagines the childhood of Joseph and illustrates the dangers of favoring one child and the extremes to which sibling rivalry can lead. Animated by their jealousy, Joseph’s brothers sell their preferred brother to Egyptian slave traders. It’s an act they come to regret.

Fortunately for Joseph, he has an ability to interpret dreams, a talent that ultimately helps move him from slavery to a position as a powerful advisor in the court of the Egyptian pharaoh.

In Egypt, happily married and a father himself, Joseph one day encounters his own brothers, who have come to plead for food. It is a time of famine, a situation that Joseph had foreseen, and for which Egypt was well-prepared due to Joseph’s accurate interpretation of a recurrent dream Pharaoh had had.

Although he is now a powerful grown man, Joseph struggles with himself over how to treat his brothers, as his hurt, anger and desire to be loved by his family emerge once again – a situation with which any child could identify. And we see Joseph’s wish to forgive and help his family win out over his desire for revenge – a useful lesson to all.

The film ends with a joyous but sad reunion with his beloved father, Jacob; sad because of all the lost years when they weren’t together, joyous because they finally found each other. Then Joseph welcomes the family, and they live with him in the palace.

It’s a well-told and compelling story, one your children will find riveting. In fact, 9-year-old Tzvia Berrin-Reinstein has this to say: “I think if kids liked ‘The Prince of Egypt,’ they’ll like ‘Joseph: King of Dreams,’ [which has] the same kind of characters.” Tzvia especially liked “the music,” and “Joseph’s coat, which was all shiny.” Asked if she would like to watch it again, the answer was a resounding “Yes.”

The film includes the voices of Ben Affleck (“Shakespeare in Love,” “Armageddon”), Mark Hamill (“Star Wars”), Steven Weber (TV’s “Wings”), and Judith Light (TV’s “Who’s the Boss?”) and features five new songs by John Bucchino, sung by Jodi Benson (“The Little Mermaid”), David Campbell and Maureen McGovern.

It is directed by Robert Ramirez and Rob LaDuca and produced by Ken Tsumura, with a screenplay by Eugenia Bostwick-Singer, Raymond Singer, Joe Stilman and Marshall Goldberg.

The movie is currently in release. Look for it in your local video store.