ETERNAL CHILD

I don’t know why I feel compelled to post this piece, but I do. A mother aged 78 recalls her trials bringing up a child before there was even a word known as “autism”. The child is now 51. Parents are parents all around the globe and this could be the story of anyone with such a child. Enter the world of Tirza and her daughter Ayala. I won't forget this story for a long time, if ever. And I will continue to give thanks for the gift of bright beautiful children blessed an abundance of health and properly balanced brain chemicals.

 

Ayala Katz

When Ayala Katz was a baby, her mother knew something was wrong with her, but in 1960s Israel, no one knew what it was. In the '70s, Katz was one of the first in the country to be diagnosed with autism. But it was already too late for her

By Esti Ahronovitz

HAARETZ.COM

February 19, 2011

From the balcony of Tirza Katz's well-kept apartment in Nes Tziona you can see the Be'er Yaakov Mental Health Center atop a nearby hill. There, in a special hostel called Neveh Rivka, is where her autistic daughter, Ayala, 51, lives. 

Every Tuesday, Tirza, 78, takes her daughter out and they spend the day together. 

There is a set ritual: The day begins in Tirza's kitchen where she prepares all of her daughter's favorite foods - cake and coffee, schnitzel and mashed potatoes, and other treats. Then Tirza prepares a bubble bath for her daughter. The bathroom cabinet is stocked with lotions and cosmetics, and Tirza lovingly massages her daughter's gaunt body. 

The finishing touch after each visit is the two bottles of perfume that Ayala receives as a gift. She takes the bottles and looks toward the door. "You want to go home now?" her mother asks. Ayala nods. 

Ayala moved into the Neveh Rivka hostel for autistic adults when it was first opened 13 years ago by Alut, the Israeli Society for Autistic Children. Before then, from the age of 14, she lived in a closed institution for the mentally disabled. Ayala is one of the first people in Israel to have received a diagnosis of autism, and is today one of the oldest such people in the country. 

Neveh Rivka is home to 17 autistic adults age 30 and above, all with a low level of functioning. (Of the 16 hostels in the country run by Alut, this is the only one where all residents are of that level). The daily schedule never changes: wake-up call, showers and breakfast. At 9 A.M. the residents go outside to the yard and work in a workshop for three and a half hours. Then come lunch and rest time. At 4 P.M. there are various activities ~ sports, music, therapeutic massage or an outing. The day concludes with dinner. 

"We try to create a kind of normative model here," says Danny Greiber, the social worker at Neveh Rivka, "a model where people work in the morning and engage in leisure activities in the afternoon." But when the activity ends, what follows is not quite as normative. Often, after dinner, the residents and the staff face a long sleepless night. "If, just once, I could get into the head of one the residents, for just five minutes ...," says Hagit Schwartzman, the hostel director, wistfully. 

In contrast to its colorful, pastoral surroundings, the hostel's old building is devoid of any bold colors or decoration. The only picture is a framed mosaic made by one of the residents and nailed to the wall. 

"Nothing survives here," explains Schwartzman, somewhat apologetically. The toilet water tank in the bathroom is also fastened to the wall and covered by a wide plank ~ otherwise, it, too, would likely be torn off. 

The rooms are furnished very simply, each with two beds and two nightstands. In Ayala's room there is a last remnant of a purple curtain that someone once hung. The hostel has two floors - each with four rooms, a shower and bathroom, a living room with old couches and a television that's used mainly by the staff during the long nights. 

The hostel is surrounded by a high fence. In the yard there is a slide, a seesaw and a bench. A gate leads out to another yard where the workshop is located; the gate is kept locked. 

"Ayala is the 'elder of the tribe,'" Schwartzman explains. Ayala is very thin, with gray curly hair. Her delicate hands are dry and cracked because of her habit of collecting old bits of metal and other assorted junk, and of smelling and touching everything. She looks older than her 51 years. 

"She's aged a lot in the past two years," says Schwartzman, who has been at the hostel for nine years, three of them in a management position. 

In the workshop, like the other residents, Ayala forms heart shapes out of clay that will later be painted in pastel colors and glued to small magnets. She is restless. Abruptly she gets up and walks away. Another woman resident starts jumping. Another is sobbing. This is a routine morning. Calm, even. Ayala comes closer to get a whiff. For her, smell is the "calling card" of a person standing across from her. 

Ayala does not speak. When she's frustrated she yells. When she's happy or relaxed she hums old Hebrew songs. Schwartzman calls her "Ayuli." "Everyone here has a pet name," she says with a smile, blowing a kiss to one of the female residents. 

When work is finished, the group disperses in the yard and waits for lunch. Ayala goes up to her room. On the way she stops in front of a closed door and starts yelling. Behind the door is where the perfumes, whose smells she so dearly loves, are kept. On the wall is a page with instructions for the staff: "When does Ayala get perfume? One spray of perfume on each hand in the morning, after she's finished getting dressed and brushing her teeth. In the afternoon, after she picks up chairs when lunch is over. In the evening, after she picks up chairs when dinner is over." 

From a young age, she showed an inexplicable attraction to strong odors. Her favorite is the smell of iron. "Especially rusted iron," Greiber explains. "It has a more unique smell." 

Outside the hostel, next to the fence, is Ayala's collection from outings in the area: iron rods, bits of lumber, a broken table, an old wheelchair and so on. Twice a day, in the morning and afternoon, the staff let her go out to enjoy her little piece of heaven. There she arranges the objects, fingers them, smells them. 

The staff are continually astounded by her physical strength. "On one outing to the orchards here," recalls Schwartzman, "Ayala found a broken door. She decided to take it with her, but couldn't drag it herself. We didn't help. And then one of the fellows, another resident, grabbed onto the other side of the door and picked it up. We were in shock because there is no connection here between residents. Each one is in his own world.

But they dragged the door together, over a difficult trail, all the way to Ayala's collection. That's one of those things that make one want to keep working in a place like this. We're always being surprised by something else." 

Greiber remembers an old faded sign on the grounds that Ayala noticed on one of their outings. He'll never forget how three staff members had to hold her back to keep her from tearing it off. Today the sign is in her collection. "She is one of the most stubborn people I've ever met," he says with a smile. 

'MAYBE SHE'S MUTE?' 

Ayala Katz was born in 1959 in Bnei Brak, to Tirza and Ephraim, and she has an older brother, Yehoshua. "She was such a lovely, beautiful child," Tirza remembers. Her father was a food supplier and later opened his own meat plant. Her mother worked in a bank. At nine months, Ayala suffered repeated seizures, but the doctors couldn't find any problem. 

"The doctors told me: You're crazy, there's nothing wrong with her," recalls Tirza. 

I said: 'No, she's different, listen to me, I know. I've raised a child already.' But no one listened." 

Months passed and Ayala did not start to talk like other children her age. She refused to learn how to eat on her own or to dress herself, but her beauty fooled everyone. "She looked like the healthiest child possible," Tirza explains. 

We were told: "So she doesn't talk, so what? Maybe she's mute? At the time, no one had heard of autism." 

In the family home, the nights turned to days and the days became unbearable. As a toddler, Ayala hardly slept. Even two hours of sleep in a row at night was unusual. 

"She would get out of bed in the middle of the night and come to me," says Tirza. "I would walk around holding her and singing to her to get her to fall back asleep. She would sing with me until the morning. I call her a gypsy. Even now, when she cries she sings. When she's happy she sings. She sings all the time." 

She kept on taking Ayala to doctors. Tirza's father, Zvi, came along. "I don't know where God gave me the strength," she says. "When the subject [of her development] came up, my husband would lose his composure and start to cry. She didn't feed herself or dress herself. And every time I tried to teach her how to do something, I'd end up feeling like an empty sack of potatoes. My father was my rock. He said: She'll be all right. I needed to find solace in that illusion. No one knew what the matter with her was. 

"At one point we went to a world-renowned neurologist. After a month of tests he told us: 'Forget about the child. Put her in an institution and it will be like it never happened.' 

It was absolutely horrific. My husband went to one side to cry and I went to the other side to cry. I said to myself: I'll show him that what he's saying is wrong. I started working on her from morning till night. I taught her to dress and feed herself and to control her bowel movements. 

The neurologist said she would never get anywhere. And every time I taught her something, I thought: I'll show him. I did as much as I could." 

When Ayala was four, Tirza took her to preschool and stayed with her there. "I thought that if she heard children talking she'd pick something up," she explains. "The children really loved her, but she didn't cooperate with them. The most important thing to her, even then, was smell. She would smell the children. If she liked the smell, you were her friend. If not, you couldn't come near her." 

HOW DID SOCIETY ACCEPT AYALA? 

Katz: "The society was very closed to anyone abnormal. If I heard about a family that had a child who was abnormal and I went to them to hear about their experience, to ask for help, they would tell me: 'There's no such thing in our family' and slam the door. 

We lived in Bnei Brak then and the attitude was terrible. I would take Ayala out in the stroller and neighbor women would shout: 'Why are you spoiling her? Such a big girl, in a stroller!' 

We took her everywhere we went. And wherever she wasn't wanted, we weren't wanted either. Other relatives thought I was exaggerating. They didn't see what was wrong with her because she was so pretty. 'So she doesn't talk,' they told me." 

When Ayala reached school age, she was kept at home. Tirza continued to seek answers: "I went from speech therapists to music therapists, and no one knew what it was. Ayala wouldn't cooperate; she didn't want anyone to touch her. She didn't speak, but she understood whatever I said to her. I would tell her: 'Take the socks to Daddy,' and she would do that. When I told her that we were making a cake that she liked, she would take all the ingredients out of the fridge. I saw that the comprehension was there, but there was no power of expression. Even now. Sometimes I wonder what it would be like if there was a hidden button somewhere that I could press so she would start to talk." 

From the time she was very young, Ayala's great love for music was apparent. "We would take her to concerts of the Philharmonic and if there was an intermission she would roar until tomorrow. Here in the house she had a big record player. In the middle of the night she would listen to records, and play them at all possible speeds." 

Another thing the family had to deal with was Ayala running away. "I would get up at night and find her bed empty," says Tirza. "More than once, we had the whole police force out looking for her. She would run away half-naked. There were times when we would hide the keys, sleep with them under the pillow, but then she would open the shutters and escape. 

It was terrifying. Just imagine what it was like: You get up at night and your child is not in their bed." 

'ONGOING NIGHTMARE' 

The photos in the family album don't show the specter that weighed heavily on the family. 

Here are Ayala and her father at the beach. And Ayala in her mother's arms ~ a curly-haired, plump and gorgeous little girl. The last picture was taken when she was 10 years old; it hangs in the living room. After that, there are no more pictures. At that age, after much agonizing by her family, Ayala was placed in an institution. 

What was it that made you finally decide to take her out of the house? 

"Life at home had become an ongoing nightmare and when she was that age we couldn't cope anymore. I felt I was losing my mind. She didn't go to school and she was with me at home, day and night. She would run away in the middle of the night. It was a total nightmare." 

Ayala moved into the Merkaz Lema'an Hayeled institution in Jerusalem. "We were referred there by a social worker who explained that this was a place for children like her," says Tirza. "It was a new thing ~ just a small number of children and individual, special care. No one was using the word autism yet. 

"We went to see the place. It was very hard. My husband couldn't accept it. Even after we put her there, he didn't go to see her. He couldn't take it. Eventually, the social worker called and told him: 'If you don't come we're taking her out of here.'" 

You reached the point where it was so hard with the child that you were better off without her? 

"It was harder than hell. To part with a child you are so close to, and to move her so far away that you can't see her every day ~ it tears you apart. I knew they would take care of her, but I also knew what I gave her. I wasn't sure they could give her what I gave her. 

"Ayala didn't want to be there during those four years [and] we didn't see progress. She came home every Friday and every Sunday I brought her back there. Always with tears. 

At some point I went back to work, in the family business, otherwise I would have lost my mind from sitting and thinking: What is she doing now? Did she run away? 

"One of my nieces was studying special education at the time. I warned her: Think twice ~ you're not just dealing with the child, you're also dealing with the parent, and that's 10 times harder." 

When Ayala turned 14, her parents searched for another institution for her that would be right for her age. In the end, with heavy hearts, they put her in Neveh Menashe, near Hadera, a home for the mentally disabled, where Ayala lived for the next 24 years. 

"At the time, they had 360 mentally retarded children there," says Tirza. "Since Ayala had a tendency to run away, they put her in a closed ward ~ with bars. And that's when the serious regression started." 

In her first years at Neveh Menashe, Ayala tried to run away time and time again. Often, she would behave nicely until the caregivers began to trust her more, and then she would find her way to the gate. 

"That's where the problem with the metal started, too," says Tirza. "She's attracted to metal objects. At Neveh Menashe they had Jewish Agency beds, made of iron. She would throw patients out of the bed and then jump on the beds until they fell apart. And then she would drag the pieces of iron back to her ward." 

Tirza says her daughter was treated with psychiatric drugs back then. "They totally drugged her. When I realized that they were doing that, I went to the psychiatrist and asked why. 

He told me: 'She's disturbing everyone.' 

I told him: 'That's why she's here. Why don't you just anesthetize everyone so you can have some quiet? Drugging her is not the way. If anything happens, I'll sue you.' 

And then he said to me: 'What would you like us to do? She's been diagnosed as autistic.' 

And I said: 'What? What's that?' 

He said: 'We don't know exactly either. If I knew more I would tell you.' 

"I went to the parents' committee there and together we waged a campaign against the use of psychiatric drugs on our children. I also started to investigate what autism was. At the time there wasn't much knowledge about it and no tools for dealing with it." 

THE VICTIM AT HOME 

Thirteen years ago, Alut opened Neveh Rivka. A group of parents whose autistic children had been institutionalized in facilities for the mentally ill moved them there (among them Rivka Fiss, for whom the place was named); Ayala also moved there from Neveh Menashe. 

The move to the new institution, like other big transitions in her life, was very tumultuous. 

Schwartzman says Ayala kept trying to dig her way under the fences with her bare hands to try to escape. 

Today, she appears to have found her place. Tirza feels her daughter has finally found a home: "When I bring her back there, when we get to the front door, she already wants me to leave. She's found her home, and it's a weight off my heart. I think that at long last she is happy. Today the only thing she will say is 'bye-bye' when I leave her there." 

Tirza and Ephraim sold their house and moved to a place just five minutes away from the new hostel. One room in their apartment is reserved for Ayala; Tirza often urges her to stay the night, but Ayala prefers her room at Neveh Rivka. 

In its first years, Neveh Rivka had an active parents' group. But that has changed. "Out of 17 residents, there are now four or five families that come to visit their children," says Tirza. 

"There are some children who don't have parents anymore. We're all older parents, most are around my age. Many are weary at this point from life's hardships. And siblings don't come. I've discussed this issue a lot with other parents. Siblings promise that when the parents are gone they'll take care of the children. I'm not sure." 

For two weeks now, Tirza hasn't picked up Ayala for their weekly date: Tirza recently had cataract surgery and then she was ill with the flu. "If I don't come one week, she makes a big ruckus," she says sadly. Schwartzman says that Ayala always waits for her mother's visit and gets agitated if she doesn't come. 

Ephraim died two years ago, after years of battling heart disease and cancer. 

"After he died I sat with Ayala alone in the room," Schwartzman explains, "and I told her that her father had been very sick and that he passed away. At that moment there was no response. In time there was a change in behavior. She became more agitated, less calm. She was used to seeing him at home on Tuesdays. I think she understood that he was gone." 

What Tirza fears most is the day when she will no longer be able to visit her daughter: "I know my daughter-in-law will do all she can and visit Ayala. And the grandchildren have promised, too. I don't expect anything or ask anything from my son. He's had enough his whole life. He's carrying a very big burden. 

Shuki suffered and paid a very high price. I remember one day when I came home with Ayala and Shuki wanted my help with something. I was worn out and I told him: 'Just let me rest for 15 minutes.' He was just a little boy, and he stood there in front of me with his hands on his hips and said: 'Mommy, when will you understand me?' I will never forget that moment. I told myself: That's it, I have to find time for him, too." 

And were you able to do that? 

"It was hard. Ayala was constantly tearing up his notebooks and books. I told him: You can fight with her like any brother and sister; you can yell at her and hit her. Accept her as she is with her limitations and if she bothers you too much, you can kick her out of your room. He was embarrassed to invite friends over. I told him: She's your sister, for better or worse. 

"There was a period when she liked to walk around naked and it was unbearable for him, especially when anyone was over. One time he went downstairs to play ~ we lived on the third floor ~ and I heard the whole gang of kids shouting at him, 'You have a crazy sister.' It was kids being mean." 

Did you ever talk with him about what he went through? 

"I've tried to talk with him lots of times. He always tells me: 'Mom, I've got enough on my mind.' Today he is the father of four wonderful children who give us a lot of joy." 

When Ayala is happy she moves her hands in circles. Music gives her pleasure ~ especially Hebrew music. "She loves the old songs of the Palmach," says Schwartzman. Tirza says that she brought a CD player to the place twice, "but the children broke it." 

You call them children. 

"Yes, they will remain children forever." 

Do you ever think about where Ayala might be today if when she was young, there had been the kind of knowledge about autism that we have now? 

"It's a whole different world today. If she were born today, I'm sure she'd be talking and going to school. We would have succeeded much more. Even though today in the field of autism they're still groping in the darkness." 

Do you feel you missed out? 

"What could I do? I just thank God that anyone who has to go through this ordeal today has help from Alut and that there's a lot more knowledge. Unfortunately, even now there are parents who just get wrapped up in their sorrow and don't seek help. When I come across such people, I point them in the right direction. I try to help. When I asked for help, I got the door slammed in my face, and right then I vowed that whatever I knew I would teach others." 

Do you still see a stigma attached to autism? 

"I see that there is still an aversion to the label. My husband also used to say to me: 'What do the doctors know? How can they just decide things?' 

And I would tell him: 'Ephraim, be realistic. Look at what we're going through.' 

And he would say: 'So what? If they say she's retarded or autistic ~ will that make it any better?' 

"You know, when I used to go to Neveh Menashe, on the way I would pick up another mother whose son was there. We would talk the whole way there and she always said: 'My son is almost normal.' One day I said to her: 'Look, if you don't open your eyes, you're going to fall into a very deep pit.' It is very, very hard for parents to see this. And if you don't keep both feet on the ground, you'll be lost."