Wine therapy: ‘A gift from God’

In the early 1980s, Rabbi Chaim Perkal established Alei Siach, which provides residences, education, employment and social activities to thousands of special- needs youth and adults. Perkal, an educator by profession, is set on bringing this revolution to the haredi (ultra-Orthodox) sector, his “home turf.” He has strong views regarding the negative stances adopted by this sector toward special needs individuals. Perkal's initiatives include more than 50 homes and hostels in Jerusalem and the surrounding area, day centers, a college that teaches life skills, vacation centers, integrated kindergartens, primary and secondary schools, a special school for children with emotional issues, and a Jewish studies center for Yiddish- speaking special-needs children. The Goal: To discover the inspiration and motivation of Perkal's work. The Means: A gourmet meal at Polly Restaurant in Jerusalem and Or Haganuz Elima 2012 wine. Rabbi Perkal, what led you to your work in the special needs community? I have an autistic daughter, Rivkaleh, now aged 36. Some 30 to 40 years ago, insights on autism were just beginning to come to the fore. In the haredi sector, things were far worse, and autism was virtually unknown. Suddenly, my family and I found ourselves in a completely unfamiliar world. It was virtually in the blink of an eye. My wife and I received a gift from God, which no one else, it seems, was willing to receive. At some point, instead of breaking down and crying, we simply decided to cope with the reality and make the most of our gift. When did you discover that your daughter had autism? At 18 months, she was still crying a lot. We also felt she had hearing problems, because she didn't react when we called her. We went to the ear, nose and throat specialist, who checked her hearing and reached the conclusion that the problem was neurological. When Rivkaleh was two years old, we traveled to Tel Aviv, to a well-known specialist considered the No. 1 expert in Israel at the time. He observed her behavior closely and gave us the diagnosis we feared hearing: that our daughter was autistic. On the way home, my wife couldn't stop crying. She took the news hard. I tried to be rational and simply accept the situation as fact. It's what God wanted from us: to love this little girl just as she was. Ultimately it's because of her that we were blessed with the chance to establish a solution for thousands of other families. By coping, we were able to give even more to all Israel. What is it like raising an autistic daughter in the haredi sector? In the 1980s, there were no special frameworks for special needs individuals in this community. Worse yet, families tended to “sweep” such children “under the carpet,” because the sector was completely intolerant of them, to say the least. For many children with special needs, rooms were built into the balconies of family apartments to hide these children away, and no one heard of them, saw them or even knew they existed. It was simply horrific. My wife and I decided that we weren't going to hide Rivkaleh, that she was part of us, integral to our family, and we would be happy about it. Did you pay a high price for your decision? Yes, we did. At that time in the haredi sector, a child with any kind of retardation was considered a burden, almost like a contagious disease! Fear of such children was so great that we sometimes felt the whole family was impacted. I can never forget the time when Rivkaleh's sister went out with her to the playground and came back in tears. She told us that children from the neighborhood chased them, screaming “Here's the crazy one!” – and she told us it was the last time she would ever go out with her sister in the street. It made our hearts break. Why would there be a fear of special needs children in the haredi sector? The thing most feared in that sector is harm to potential matches for the special needs child's siblings. It's one of the most sensitive and painful areas. When a special needs child is born into a family, there's a fear that future matches will be affected. Very frustrating… Absolutely. But sometimes it can also lead to amusing situations. When we made the first match for our older son, I told the matchmaker, “I want the other family to know we have an autistic daughter at home.” The bride's family apparently panicked and decided to forgo the match. My wife took it hard, because it's not easy to cope with rejection. But thank God, our son is happily married. Over time it turned out that the girl whose parents disagreed to the match ended up with a really unpleasant divorce, so I told my wife, “See? Rivkaleh didn't ruin her brother's match, she saved him!” Have you met parents who are ashamed of their children? Of course. Unfortunately, there are still many such parents. In Alei Siach's homes there are individuals whose families have no idea of their child's existence because the parents abandoned the children right after their birth. Your daughter has fairly severe autism. Did you ever think of removing her from your home and placing her in an institution? At some point, when I saw how severe the situation was, I thought she might need to leave our home, but my wife said, “If she goes, so do I – for as long as I live, she'll live here with me.” It's a very strong emotional connection, part of motherhood, this inability to disconnect, until the point of collapsing. Other relatives tried to convince my wife, too, but she wasn't prepared to forgo on Rivka. There's logic in that... Look, when you have a child with severe autism at home, everything can get turned upside down; all your theories go out the window. The whole house functions around the child, and there's no normal life. There's no freedom, there are no celebrations, there's no time for brothers and sisters, and their childhood is in fact taken from them. It's impossible to plan anything, and the entire household basically comes to a halt… unless you remove the child early enough to a suitable framework. When Rivkaleh reached adulthood, there was a moment when my wife realized that this would be an even tougher time frame, and that what we'd been through until now with Rivka was just the introduction to a very uncertain future. But there weren't any suitable frameworks for autism in the haredi sector at the time… The situation simply forced me to take action and establish one! I approached the manager of the department handling children with mental impairments in the Social Affairs Ministry, and suggested opening an institution for children with autism in the haredi sector. He said that with all due respect, managing such an organization is a very complex matter, and suggested I open an apartment for girls from that sector, under the auspices of some other organization. In the end, we set up Alei Siach, and the rest is history. Thirty years after Alei Siach began, what's changed? In the early years, the sector experienced a huge revolution around the issue of autism. The sector went from ignorance and fear to acceptance and containment within the community. How did Alei Siach's activities contribute to the change? We led a huge social change in the field. One good example is the long journey we've taken by insisting on letting our adults live in apartments in the heart of the community. In the 1980s, even before we opened the first apartment, neighbors were off to the court about it. It was our great luck that the judge was just starting her career [and later became a Supreme Court judge – A.F.] and recommended to the neighbors to withdraw their claim, telling them she would not deny our children the right to live in the apartment. Municipalities used the verdict in our case as their precedent. Your organization does a lot to educate the community about “accepting the other.” We make an effort to transmit this educational message to the community through all of Alei Siach's activities. If we're talking about apartments, for example, then they'll be situated in the heart of the community. And of course there's the Ofek program, which helps us find marriage partners for special-needs individuals while simultaneously integrating them into the community. You're the first person in the Jewish world to establish a marriage program for special-needs young adults. Tell me about this. One day I met with Rabbi Haim Drukman [a leader in the national religious movement – A.F.], whose daughter Shulamit has Down syndrome. She was living in one of our apartments. Drukman spoke to me about his daughter's wish to marry and the verse in Genesis, “It's not good for a person to be alone.” He said, “You've brought them to such an advanced level, so let's get professionals to check their capabilities in this area, too.” When we received their approval, we found his daughter a Down syndrome spouse and helped them with the marriage. We recruited the leading professionals in the field and succeeded. It's an incredible investment, but we have to let those able to marry to do so. Once the first couple was married, nine more married and many more are waiting to marry. Every couple who marries… we commit to supporting their needs “until 120,” as we say. How about an amusing anecdote from the organization's activities? There used to be a coffee place in town called Nava. Every Saturday night, after Shabbat, our staff would take the girls out there. The first time we did this, the coffee shop manager came over to the staff member in charge and screamed, “You're chasing our clients away! Can't you find some other place to go?” Some weeks later he'd already gotten used to them. He would greet them with: “Good that you're here, I've got your table ready.” Some months later, on one of the occasions that the girls were at his coffee shop, a client complained that their presence disturbed her. Instantly the manager told her she was free to leave, and added: “They bring a blessing to my coffee shop!” As this goes to publication, the Alei Siach Summer Camp is about to take place. Despite the vast investment needed, it will be open to anyone suitable in all of Israel, and represents a peak, a dream come true, for special needs children, including hundreds with complex impairments. For them, this is the only chance of enjoying the summer vacation. To support the project: alei@alei-siach.org.il

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