Children with Autism Succeed at Reach for the Stars
The graduation ceremony was an occasion long anticipated. Still, when it finally arrived Sarah Mezri* and her husband were ill-prepared for the intensity of the emotions they felt watching their son with autism, Joseph*, sitting next to the podium, his face beaming. The small room was packed. Joining the Mezri’s were students and faculty, the sole inhabitants of Joseph’s inner world. They were celebrating this momentous milestone in his development and were cheering him on to even greater accomplishments. After seven years of hard work, the ten-year-old boy was graduating from Reach for the Stars, a Brooklyn-based school that provides one-on-one developmental training for children with autism. Joseph would be moving to a more typical yeshiva. It was an overwhelming occasion not only for Joseph, but for his parents as well.
“I was so emotional that I didn’t even think of inviting my parents and extended family to his graduation,” Sarah recalls. “I watched his teachers, who had put so much effort into Joseph’s development speak so lovingly about him with tears in their eyes, and how they would miss working with him. I watched my son publicly thank his teachers and his parents, and then he sang a solo, accompanied by his music teacher. I couldn’t stop crying. There was my child, so excited, proud, and confident, ready to take on life’s challenges. He fully understood that he was leaving behind this safe, warm environment, and was excited about the future possibilities opening up for him.”
Joseph may have been more than ready to take that plunge, but his mother was another matter. “I didn’t know how I would handle leaving all of these wonderful people behind. To me, the teachers and administrators were family. This building was my second home. The only picture I have on my night table is that of Joseph’s graduation.”
Even today, almost six years later, Sarah chokes up when remembering that day. Joseph had made it, after a long, hard struggle. He was now fully capable of integrating within a typical classroom setting where he was no longer the center of attention and was receiving one-on-one training. The uphill battle finally over, his challenges would fall within the range of most children, albeit with less expected of him academically.
“Joseph’s now attending a vocational school where he’s learning to hold a job and how to succeed in the outside world. My goal is that he be able to live a religious life within the community and be independent,” Sarah says.
Looking Back at Overwhelming Challenges
Achieving these goals is well within Joseph’s reach. How different from before! Sarah thinks back on Joseph’s first three years of life with a shudder. A part of her refuses to remember the pain, confusion, and sense of hopelessness that enveloped her and her husband at the time. But seeing Joseph as he is today – happy, conscientious, and interacting beautifully with family and friends, and so like most teenagers his age, it’s easy to understand her reluctance to look back. Today, Joseph reads and writes beautifully, loves to sing, and is fascinated with science and the natural world around him. But most importantly, he is capable of loving others. He loves his parents and siblings and expresses it both verbally and non-verbally. His feelings and expressions of love did not come naturally to him, but had to be learned.
At six months of age Joseph would lay in his bassinet quiet, flat, and unresponsive – “too good,” as his mother recalls. Sarah was a young mother with a one-year-old daughter, and she instinctually felt that something was seriously wrong. As he grew, Sarah’s misgivings were confirmed. From age one Joseph was still not doing those things most toddlers do. There was the occasional smile, but he never said “Mommy” or “Daddy,” or made eye contact, or communicated in other ways. Instead, he became obsessive. Children with autism, Sarah says, fixate on things. Joseph would twirl a string for hours, and whatever he picked up he threw away. And he did this again and again. For many children with autism, this is normal. Their brains are less flexible than regular children’s. Subsequently, they often fixate on things or tasks that are enjoyable to them, often getting stuck on finishing their work or on a game.
By the time Joseph reached two years of age he was still unresponsive. He was evaluated and placed on an intensive program of speech and physiotherapy. After a year, there was little improvement. Joseph was able to walk, but he did little else. “He didn’t say one word and wasn’t toilet trained. How does one toilet train a child who doesn’t have any concept of ‘I want something to eat?’ He was constantly throwing tantrums, leaving the house, and running away. He had no danger awareness. Nothing,” Sarah says.
Diagnosis of Autism
When, at age three, Joseph was diagnosed with Autism Spectrum Disorder (ASD), the Mezris were clueless about what this was or what living with this entailed. They were told that autism is a complex neurological disorder that affects all five senses and is more common than is generally believed. At the time, one in 88 children worldwide was diagnosed with ASD, according to the Center for Disease Control and Prevention. About ten years later, in 2014, the numbers significantly increased to one in 59. ASD remains today the second most prevalent neurodevelopmental disorder among children, predominantly males. There are five times as many boys with autism than girls. Autism’s underlying causes are little understood, as is the reason for the alarming increase in diagnosed cases. Social scientists have tried getting to the bottom of this. Research on this subject soared from over 2,300 scientific papers published in the 1990s to close to 9,000 published studies over the next decade, shedding much light on this mysterious disorder.
Sarah sees their early cluelessness as a blessing: If she and her husband had known that Joseph would need over forty hours per week of therapy to acquire simple skills that come naturally to most children, she would have given up in despair. Typical children absorb 60% of what they learn, while children with autism absorb 20% of what they learn. Subsequently, information must bombard their brains at a more intense pace.
There were other blessings, as well. Increased knowledge about autism resulted in creative new treatments and approaches, offering realistic hope to parents that their children will be able to function meaningfully in a real-world environment, even if they will not entirely overcome the disorder. The Mezris were also fortunate to be one of the first couples to place their son in the newly-established Reach for the Stars. That the school came along just when they needed it, Sarah says, was a miracle.
Reach for the Stars School Reaches Out
The school, in fact, might never have come about. It developed accidentally from program that was designed as a respite for children with autism that was sponsored and manned by volunteers through the Sephardic Bikur Holim in Brooklyn. This program was directed by Barbara Matalon, one of Bikur Holim’s founders. In observing the children, it was obvious to all that despite the enormous efforts invested in them, few of the children were making real strides. With the parents’ encouragement, Bikur Holim began looking into opening a school, which it founded shortly afterward.
Since then, Reach for the Stars has transformed the lives of hundreds of children and their families. General Director Barbara Matalon exudes well-deserved pride when talking about the school, now in its 14th year. In June, the school will be moving into a sparkling new building located at 1818 Avenue P. The school will be opening a class for three to four-year-olds. Their students range in age from two years and nine months, when the children legally finish early intervention, and onwards. The earlier a child begins therapy, the more successful the outcome. Not all applicants qualify for admittance. Potential students may not be visually or hearing-impaired, and they must be recommended by a pediatrician, neurologist, or behavioral psychologist who confirms that the child is somewhere on the autism spectrum. The program is tailor-made for these children and not for those with Asperger’s or other neurological disorders.
Reach for the Stars have much to celebrate. Their accomplishments have consistently matched the most successful schools of its kind in North America: 60% of their graduates go on to more typical yeshivot where they learn in a normal classroom environment. Not bad for a school founded by volunteers with little knowledge of what autism was. It wasn’t all hashgacha pratit though. These men and women did their homework; they visited existing schools in the New York and New Jersey area, and extracted from them those ingredients that they felt best contributed to children’s success.
“We understood that the school must be open all year round, otherwise any skills the children acquired would be lost over the summer; that it be privately funded otherwise we couldn’t attract top-quality teachers; and that the teacher-student ration had to remain at a minimum of one-to-one. Most importantly, the program had to be data-based and its results replicable. We know a child is progressing when his progress is scientifically tractable. If the data shows us otherwise, we teach him differently,” Mrs. Matalon says.
Reach for the Stars’ Challenges and Structure
These requirements presented quite a tall order, given that what works for one child does not necessarily work for another, and the children’s challenges are enormous. Children entering the program are commonly unable to sit, make eye contact, focus on a voice, or speak. Subsequently, their behavior is often out of control: many throw objects, scream, and hide under tables. These behaviors cease once they start communicating.
The school is structured on a program developed in the early 2000s that Reach for the Stars has adapted for their purposes. The program makes use of naturalized Applied Behavioral Analysis (ABA) with a focus on peer interaction, socialization, and communication. ABA breaks down complex skills into their tiniest elements; they are then taught as skills. After mastering each skill, the children receive a reward. This technique mimics real life, where people are paid for work well done. The objective is to enable children to learn skills in all natural environments, and not only within the school setting.
Complicating matters further is that children all learn differently. Some, such as Joseph, are visual learners, while others are auditory learners. Because their senses are distorted, information coming in through them can be overly intense or not intense enough. For some, the slightest sound can be deafening, while others hardly hear outside sounds at all. Children that cannot distinguish between speech and outside noise learn to communicate through pictures using augmentative devices, such as Dynavox, TouchChat, or ALAMP. The children tap on photos or illustrations of objects, such as pizza; a voice mimicking their voice then answers, “I want pizza.”
Others learn more silently. These children wear earphones that tune out specific frequencies to allow them to hear the teacher’s voice. These state-of-the-art technologies work big-time. Mrs. Matalon recalls Yehudah*, a former student, and valedictorian walking into her office without his Dynavox. “Barbara, I can speak,” he answered excitedly to her question. “He came into our school non-verbal, and now the words flow from his mouth. It’s mindboggling. He’s also a master chess player who beats boys ten years older than him,” she proudly adds.
Where Reach for the Stars most shines, Mrs. Matalon believes, is in its at-home visitation services. Sarah Mezri vouches for that. Every morning at 7:30am, a teacher arrived at the Mezri home to review the protocols Joseph learned in school, such as toilet training and social awareness. But mainly the teacher taught the family how to develop a relationship with Joseph, and Joseph with them. “She taught him to say, ‘I love you, Mommy.’ Maybe it was a little robotic at first, but it worked,” Mrs. Matalon says.
Former students often come back for visits. Mrs. Matalon is thrilled with their progress. One young man did not speak a word when he came to them; instead, he hid under a desk and screamed all day. At graduation, the eight-year-old gave a speech about not being able to decide whether to become a basketball player or an astronaut. Today, he is studying in yeshiva in Israel. Knowing full well the extent of their struggles, when Mrs. Matalon receives pictures of the smiling, happy, well-adjusted young people they’ve become, she cries tears of joy.
On some level, this entire enterprise represents a journey into the unknown, shared with unique students, parents, and dedicated faculty. “Together, we’re creating a child that didn’t exist before. Previously, children with autism didn’t make these kinds of strides. They didn’t get this kind of treatment; there just wasn’t this amount of knowledge available as we have today,” Mrs. Matalon concludes.
· Names changed to protect privacy.