Throughout the years, she’d hidden her in the windowless room at the back of the house. I always wondered why we were never welcomed over the threshold. I knew her daughter had been born with a problem, but it was never discussed and I’d only caught a glimpse of her from afar before she was hurried away. Oh sure, people gossiped, as people always do, but Chedva was my friend, and I defended and respected her right to privacy.
She wasn’t a bad woman or even a simple woman – I know now that her silence was a response to despair and self-loathing at her inability to reach out and touch her child’s soul.
A few months ago, she invited me into her home for the first time. She wanted me to meet her daughter. She was bubbling and brimming with enthusiasm as she opened my eyes to a whole new world.
The pretty little girl, about eight years old, frolicked happily in the living room among her siblings, not really seeing or relating to them, despite her perfect eyesight.
“She’s autistic,” Chedva said softly. “Which essentially means she lives in a bubble. I can’t describe the years of frustration, knowing that even I, her mother, wasn’t able to break through the impenetrable casing. No matter how hard I tried nothing worked.”
Chedva went on to describe a whole slew of difficulties she’s had to deal with. Unfortunately, autism has become more and more common, although partially as a result of more accurate diagnosis.
“I have discovered a whole network of parents who are in the same boat, and now that I know I’m not alone I don’t feel so awful. I’ve finally come out of the woodwork.”
Her daughter was in desperate need of special schooling that until a few years ago could only be dreamt of.
Their life is a long uphill battle, strewn with difficulties.
Recently, Dr. Joshua Weinstein, who does not promise miracles, has brought a measure of joy to parents like Chedva by showing them a way forward. He not only works with autistic children, he also teaches parents how to help themselves.
I was surprised when I met Dr. Weinstein. I had not expected to find that the man who has devoted his life to deciphering the mysterious world of autistic children was a chassidishe father of seven.
“I am a chassid of everybody,” he said warmly.
“How do autistic children differ from ordinary children,” I ask him.
“There is no one answer and sometimes autism can be very difficult to diagnose because autistic children look similar to regular children, when in actually their inner makeup is very different.
“Some children don’t talk at all, while others have very interesting speech patterns, repeating the same few words over and over again. The problem is that most people who can’t talk with their mouth speak with body language, whereas the body language of autistic children is often awkward and as a result of not being understood, they become easily agitated. In their younger years, they usually play alone, not initiating contact with other children, often unable to make eye contact. When they do approach others it will be inappropriately, thus, interestingly, distancing others as opposed to bonding with them.”
Dr. Weinstein is on a mission. Although based in NY, he spends a good deal of time traveling to and from Eretz Yisrael. His present project is a medical conference focused on furthering research into the symptoms and ways of bettering the lives of those suffering with autism.
“I am a chassid of everybody,” he says warmly once again.
With ideals and a mindset firmly based on Torah values, as well as broad knowledge and experience in education, he found his niche in the workplace. Before long he was the director of a company providing support and assistance for the physically challenged – both in institutions and at home.
One of his clients was a young woman with two disabled children. Once, during a conversation they began talking about autism. Although familiar with the term, as most of us are, Dr. Weinstein had a very vague picture of what autism is all about.
This young woman, a vivacious, determined individual had established support groups aimed at helping parents cope with their children suffering from differing disabilities. She told him about the almost twenty families she knew whose children were autistic and had no real support system to help them with their needs.
“She asked me to get involved,” says Dr. Weinstein.
“That seemingly simple request put my entire existence on a different track. In order to be of any real help I felt I needed to learn more about autism. I read for hours, poring over books and medical reports exploring and researching whatever was available on the subject.”
Six months after this initial “getting acquainted” with autism, he picked up the gauntlet and opened the first Jewish school for autistic children in New York, a private school called Shema Kolainu.
“This was not a logical decision – I felt a magnetic pull. G-d was pulling the strings and I was going along with what He was sending my way. I left everything and started ‘life’ again totally focused on this new undertaking – children with autism and their families.”
“In 2001 I saw a building that was ideal for the school,” he told me overwhelmed by the obvious Yad Hashem he has seen through the years.
“I needed 60,000 dollars up front, and I didn’t have the money. I postponed meeting the seller at the lawyer’s office a number of times, until I knew I was running out of time and delaying tactics weren’t going to work. When does a Jew in trouble do? He prays – I sat down and prayed.
“As I was praying the phone rang, and the unknown caller said she heard we were buying a building and wanted to donate her ma’aser money. She was sending $20,000!
“Although this was an obvious miracle, I was still short of $40,000.
“Clutching straws, I contacted a charity fund that had pledged $20,000 and told them our predicament. They got back to me a short while later and after filling out a few forms they upped the donation to $50,000…”
He bought the building.
One of the most influential figures in his career has been Dr. Douglas Greer. Dr. Greer promotes a teaching system called ABA (applied behavior analysis). This program is an intensive form of learning that is continually monitored so that even the smallest breakthrough can bring about major advancement. The system and its success rate speak for itself.
Teachers identify gaps in a child’s development, create conditions under which the child has an incentive to learn and then rewards him for his learning behavior. He is well known as an expert educator and Dr. Weinstein has had constant contact with him throughout the years, often asking him to recommend staff members from among his students.
“Recruiting outstanding professional staff is one of our key aims. Our school is not a babysitting service. It is a place to teach the children and help them realize potential usually buried under layers and layers of behavioral issues.
“It is the Chazon Ish’s personal respect for autistic children and their parents – realizing that they are special that is my guiding light,” says Dr. Weinstein.
The school is now filled to capacity.
Not content to rest, Dr. Weinstein branched out to the larger New York community, sending teachers into student’s homes to learn with them on a one-to-one level. There are now about 1,000 children enrolled in the program.
In his opinion, the sooner you start working with these children, the higher the success rate. If you know that a child has a problem, then start young, even at 3 months.
“You have to start with the most basic problems, such as creating eye contact and developing other social skills.
“The child has to be clear about what is expected of him. For example, if you do a puzzle together and the child throws the pieces around in frustration, you never show signs of anger, but ask him to pick them up. If he does not obey, you take his hand in your own and help him pick them up. You do this until you’re sure the child understands what is expected of him.
“Although there are different degrees of autism, one of the most common characteristics is a square thought process.
“Once a high functioning student of four, who had already learnt to read, deliberately released the fire alarm, setting off panic and bringing the fire trucks.
‘Why did you ring the bell?’ I asked him patiently.
‘He answered in all innocence, ‘the handle said “Pull me” so I did!’ From that day on we had thick glass placed over all the fire alarm handles.
“If you tell such a child: run along to the kitchen and get me something, he would literally run. They understand everything in their most literal form.
“Even the most high functioning child sees life though a looking glass, that is why the system of working with them on a one to one basis works best. For those who don’t talk at all, we use augmented devices with buttons.
“For example at lunch or snack time when they want to eat, if they press the button with the picture of a cucumber they’ll get a cucumber, chicken and they’ll get chicken or any other food item pictured.
“Coping with the frustrations of being unable to express themselves, they sometimes become very moody,” Dr. Weinstein explains, remembering one child who had been through a number of schools and was still not talking. “We worked with him for months, taught him using all our best methods, and still nothing helped. One day the family went on vacation and all of a sudden the child started talking. By the time the family returned he was saying full sentences. That is when we realized that all the years he was learning he was storing the information, in his head. Something triggered his thought process, breaking the barrier and releasing all the knowledge he had accumulated over the years.
“Once again the first thing we do is teach them how to interact with other people, to hold hands, to call people by name, to understand that crayons are for coloring, not eating. The life of an autistic child is complex – for their parents even more so.
“Everyone wants successful children. These parents are no different, so when they hear that they have an autistic child they want an instant cure. They come to the school and after three months they say, ‘nu! What’s going on, where is the progress?’
I have to keep reinforcing the message that change takes place very slowly. Not everyone is prepared to accept that; I’ve had parents withdraw their children from school dreaming that in some place else they will find a miracle cure.
“Unfortunately, there is no such cure.
“As a result of the heartbreak that I’ve witnessed I started arranging get-togethers and seminars so parents can meet with other people facing the same challenges. Furthermore, as parents, they also need skills; they need to know how to help their children carry out basic tasks that ordinary children do automatically, such as brushing their teeth or making brachot.
“When a child makes his first bracha I feel like I have succeeded in building an entire world. You have no idea what it is like” he says his eyes twinkling.
“Once parents invited me to their son’s bar mitzvah, ‘if he would not have attended your school there would have been no bar-mitzvah,’ they said. Of course, I went to the bar mitzvah, where I was asked to speak.”
Dr. Weinstein got up, and started to describe the child, praising him for his efforts, achievements and admirable character traits. All through the short speech the boy ignored him, running around as though it was somebody else they were talking about, but as soon as Dr. Weinstein finished the child came over and gave him the biggest hug. There was not a dry eye in the hall.
“One again it brought home that children with autism understand a lot of what is going on around them, but are caught up in some kind of trap that seems to control their behavioral patterns.
“Never speak negatively about them in their presence – they hear. Behind the glass wall that separates them from relating to the outside world they hear everything.”
Dr. Weinstein was asked to open a branch in Israel using the ABA method. His initial attempts were stymied by bureaucracy, government regulations and, of course, financial issues.
He left Israel disappointed, but determined to continue his efforts. Once again Yad Hashem took over and a few months later, the Education Ministry was studying the use of the ABA method.
“This time I found all doors open to me; I witnessed tremendous siyata dSshmaya from the minute I landed.”
The Tishma School gained momentum and opened its doors in the Mekor Baruch neighborhood of Jerusalem in 2001. Dr. Weinstein divides his time between New York and Israel.
“Dr. Greer located the staff I needed – students of his living in Israel and Baruch Hashem we’re up and running.
“There are always the financial issues, but I keep in mind the words of the Nefesh HaChaim – Ein od bilvado – there is nothing but Him, and somehow we manage.
“Recently the bank tightened its belt and would not extend much-needed credit line. I invited the manager to come see the school. He loved what he saw and promised to do all in his power to help.
“You know, in a job like mine you just can’t help but believe…”
* * * * *
The International Center for Autism Research & Education, ICare4Autism, Inc. is holding the International Autism Conference title Autism: A Global Perspective on August 1st and 2nd of 2012 in Jerusalem, Israel. There will be 50 speakers from 11 different countries. On July 31st, 2012 there will be an all day workshop with James W. Partington, Ph.D., BCBA-D, Director of Behavior Analysts, Inc., and author of the Assessment of Basic Language and Learning Skills-Revised (ABLLS-R). For more information visit www.ICare4Autism.org
About the Author: Sarah Pachter lives in Israel and writes for a number of publications. She is the author of the book "Supermom? (Who? Me?)"
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