| Family First Feature |

Into Their Heads  

Brain surgery gave Jacki Edry new vulnerabilities — and new understanding of neurodivergent children

We’re taught that our souls come into this world with a unique tafkid, although it’s not always clear what that might be. But the life path of Jacki Edry, author of Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery, and Faith (2021), has put her squarely on a mission to help children with autism and neurodiversity and their families, a task she has devoted herself to with passion and love

Jacki Edry began working at age 14 with an autistic boy, which led to her working with autistic children at summer camps and then her undertaking a college degree in the field. Some of her own children were diagnosed with autism or neurodiversity, and then ten years ago, she underwent surgery to remove a tumor on her brain stem. Recuperating from the surgery and experiencing symptoms like visual disturbances, vertigo, and sensory overload gave her a firsthand glimpse of what children with autism and neurodiversity experience daily. Today, she sees that experience as a gift, one that bestowed her with deeper insight into the way autistic children experience the world and react to it.

Jacki, who has lived in Eretz Yisrael for over 35 years, combines a matter-of-fact, practical American approach with a generous dose of Israeli grit and perseverance. Currently a speaker and advocate for neurodivergent people in both English and Hebrew, she has been listed as one of the world’s top 50 “Neurodiversity Evangelists” by ND by Design, an organization that promotes employment for neurodivergent people.

Jacki spoke to me from her sunlight-filled home in Netanya, wearing a toque crocheted in lavender and mint, with occasional brief interruptions from the comings and goings of her children and from Panda, their white Labrador service dog.


Early Days

Jacki grew up in the 1970s and 80s in Great Neck, New York, in a culturally Jewish but non-observant family. At the beginning of high school, she joined a group of volunteers working with an adorable five-year-old boy named Mark who was being cared for at home. “I instantly fell in love,” Jacki would later write. “We spent hours teaching him to communicate, perform basic tasks, and speak by imitating his movements and methods of play. Progress was slow, so every time he looked me in the eye or gave me a hug, I felt as if my heart was exploding.”

After her first year at Hampshire College, where her love of animals had led to a pre-vet major, a friend let her know about an opportunity to work at a camp for inner-city, mostly nonverbal adolescent autistic boys. Jacki jumped at the chance. “It was really hard, almost too hard, but it was amazing,” she says. “We took them camping and white-water canoeing. The boys helped prepare the food and ran in the fields. We treated them like capable boys and helped them learn to communicate.”

After a few consecutive summers with these boys, Jacki realized her true life’s calling wasn’t to work with animals, but with challenged children. She switched majors in college. Hampshire College requires students to write a thesis, and she chose to research the effects of exercise on self-stimulating behavior in children with autism. She went to a local school for autistic children to conduct research,  which was considered one of the best at the time for behavior modification (now called ABA), an approach to shape appropriate behavior. “When I saw what was going on, I was appalled,” Jacki relates. “It looked like they were training dogs, giving them candies instead of dog treats if they behaved. Kids who couldn’t sit still were attached to their chairs with a felt belt, and there were padded rooms for kids who threw tantrums. There were no hugs, no high-fives like we’d given the boys in camp.” Her former charge Mark was being “schooled” there, and she avows flatly, “He was a mess.”

She changed her thesis topic to “Educating Autistic Children: An Argument Against Behavior Modification.” Then she graduated and decided it was time for a break.

Coming Home

Although Jacki’s family wasn’t religious, she’d always been curious about Israel and Judaism. She enrolled in a kibbutz “discovery” program, where she attended an ulpan in the mornings and spent the afternoons working in the gardens and pool area. One day she happened to meet a couple of soldiers from the kibbutz who asked if she’d seen Jerusalem, and, when she admitted she hadn’t, offered to show it to her. As she describes in her book, “It was a beautiful August evening, and we went to eat falafel near the gates of the Old City. The air was refreshingly crisp, and the walls of the Old City were golden and breathtaking. When I stepped out of the car and planted both feet on the ground, I was quite surprised to hear myself saying, ‘I’m home. Finally, I’m home.’ ”

“I didn’t even know where those words came from,” Jacki now says. Then her summer ended, and she returned to take up a job at an advertising agency in New York, a dream job by anyone’s standards. Yet the dream soon proved itself to be just that — an illusion. “I couldn’t get Jerusalem out of my mind,” she says. “I couldn’t function. After seven months I went to the Jewish Agency. I bought a one-way ticket to Israel, took a backpack and $500, and went off to Kibbutz Mishmar Haemek, where I spent seven months learning Hebrew and milking cows, and then to a volunteer program teaching English at Yishuv Granot near the Lebanese border.” She was given a house on a mountain to live in, where she found herself alone at night with jackals howling outside and thunderstorms that would rattle the windows.

When the Gulf War began, the program lost its funding, and Jacki found herself alone with no family or job. A family she knew offered her a spare room in their home in Netanya, where she found work, first in a health food store, and then at a program through the municipality for at-risk youth. There she met her husband Avi, who had come to Israel as an infant from Morocco. “My husband’s family was religious, even though at the time we met he was somewhat less observant, and I slowly began taking things on,” she says. “In Israel you pick up a lot of things by osmosis. When I arrived, I didn’t know the names of half the holidays, but they became a part of life.”


Growing with Her Children

Jacki and Avi soon had a daughter, then four sons. Their first son was a bright, happy baby who was already pronouncing words at nine months. But then he contracted viral meningitis. “A few months after the meningitis, he underwent minor surgery,” she says. “When he woke up after the anesthesia, he seemed like a different child. He stopped responding when we addressed him.”

Viral meningitis is known to create auditory issues, and thus began Jacki’s journey to heal her son. They tried Auditory Integration Training (AIT), which she describes as a type of “physical therapy” for the auditory system, using different frequencies of music to stimulate his hearing. After a few days, he did begin to respond. But over time the treatment became less effective. Jacki took him for hearing tests, praying the problem was deafness or a hearing impairment. “That would have made the problem easier to solve,” she avows.

But her son’s hearing tested in the normal range, and the diagnosis was instead autism. The Israeli schools tended to promote ABA therapy, which was anathema to Jacki, so she returned to New York to enroll him in the Tiegerman School, moving into her mother’s one-bedroom apartment with three children and fighting with the NY Department of Education to permit him to attend the school she knew would help him. Jacki now tells parents not to hesitate to advocate strenuously for their children. “One administrator told me angrily, ‘You’re like a mosquito I keep trying to swat away!’ But I got what I needed for my child. Tiegerman used an interactional approach, which focuses on the relationship between an individual and his social surroundings, and it helped him come out of his bubble.”

Jacki put her daughter into the local Chabad kindergarten in Little Neck, and some of the local families began inviting her for Shabbos. Her mother and siblings didn’t observe Shabbos in any way, which left her feeling empty, so she accepted invitations regularly. “I looked at those families and loved the peaceful, positive atmosphere,” she says. “I decided then that I wanted to be fully shomer Shabbos.” This perfectly suited her husband, who, during their six months apart while she was getting settled, had fully returned to his roots. He patiently taught her halachos, and since then they have lovingly lived a fully observant lifestyle.

After two years, the Edrys went back to Israel, where they enrolled their son in the Feuerstein Institute in Jerusalem, founded by Rabbi Reuven Feuerstein z”l. There he would be schooled for the next eight years under Professor Steven Gross. “It was life-changing,” she states. “They used a program that was similar to Floortime, but more cognitively oriented. The teachers connected with the child in a positive way and drew him to where they were. They also used a technique called mediated learning, where the teachers and therapists connected to the children in a positive way through things that interested them, and used these points of interest to help them learn concepts and reach the goals they were working on in a manner the children enjoyed.”

For example, Jacki’s son really loved to pour water, so his therapist used this activity to teach him many concepts. She taught him colors by coloring the water with different colored soaps, sizes by changing the sizes of the bowls, and concepts like in, around, beside, and under by changing the positions of the bowls and cups, and even showed him how to blow through blowing soap bubbles.

Jacki captures the challenge of her son’s auditory processing difficulties in her book: “The things he hears make no sense to him. This might cause him to lose track of the conversation or to answer a question incorrectly. He might say something completely off the subject because he attempts to join in on the conversation but has no clue as to what people are talking about. So, he gives it his best shot — but many times he is really off the mark. In addition, he thinks in pictures, not words. Language is something he is forced to use.”

Jacki explains that many children labeled as having attentional or cognitive disorders may actually have auditory processing disorders. They’ll miss some of the words the teacher is saying. Then they zone out, but by the time they figure out what was said, the teacher has moved on. “Within ten minutes the kid is lost and exhausted,” Jacki says. “The teacher will say, ‘You’re not trying,’ or ‘You’re being lazy.’ The other kids call him stupid, and then the child loses faith in himself.” Many children develop social issues as well, as they miss intonation or social cues, or may “get in someone’s face” in order to hear them better or to read their lips — with predictable negative reactions and mishaps with other children.

Jacki’s son has since been fitted with special low-gain hearing aids that filter background noise. “It’s been life-changing,” she says. “Now he understands what we say. He can focus and listen!”

Another life-changing intervention came when a friend gave Jacki an article about Irlen Syndrome (also referred to as Meares-Irlen Syndrome, Scotopic Sensitivity Syndrome, or Visual Stress). Irlen is a condition, usually genetic but sometimes the result of brain trauma, that interferes with the brain’s ability to process visual information. It has been found to affect a whopping 15 percent of the population, not to mention 50 percent of individuals with reading and learning difficulties, 30 percent of individuals with ADHD and autism, and many people with brain injury, chronic headaches, and migraines. Yet, as Jacki discovered, very few experts are aware of it.

Jacki decided to bring her sons in fifth and eleventh grade in for testing, as both had been diagnosed with ADHD and dyslexia. Despite years of remedial education and eye exercises, they were unable to read more than a few paragraphs at a time and had trouble with mathematics. When the tester asked her fifth grader to point to a place on the page, he pointed to a place on the table. But when he was given lenses with specially colored overlays, he executed the task perfectly. “I felt like crying. The solution was so simple!” Jacki says. The colored lenses helped him with reading, while spectral lenses with a tint helped correct all of the rest of his visual problems, including his problems with depth perception and light sensitivity. Her son was now able to play soccer because he could track the ball, and in short order became a bookworm. Irlen syndrome had masqueraded as ADHD. Her older son was discovered to have tunnel vision, which was immediately corrected when he looked through the colored lenses. His visual field also stabilized, his reading improved, and he was able to pass his high school exams successfully.

When she and her son came home with the new lenses, it occurred to her to test her older autistic son. When he tried on the lenses in the testing setting, he immediately said, “Mommy, buy me these!”

“I‘m not sure exactly how they improved his vision, because he’s unable to tell me,” Jacki says, “but he is no longer clumsy, doesn’t knock things over all the time or accidentally sit on people or stand too close to them, and now looks people directly in the eye, which he didn’t do before.”

Now Jacki says, “If a kid is reading slowly, or his coordination is off, go test for Irlen! Too often parents take a child to a neurologist who prescribes Ritalin for concentration, when the problem may be a sensory issue. Eye doctors will say the eyes are fine, and maybe prescribe exercises, but often it’s not the real problem.

“Furthermore,” Jacki says, “most kids diagnosed with autism, ADHD, and dyslexia have underlying sensory processing issues as a root cause of behavior issues and dysregulation. If the child is unable to make sense of or regulate confusing or overwhelming input, it may cause him to stim, or shut, or melt down.”


Valley of the Shadow

Between running her older son back and forth to Jerusalem, caring for the others, working, and moving to a new house, it would have been normal for Jacki to feel rundown. But by 2013, things deteriorated to the point where she had headaches, tinnitus, and bouts of vertigo, and she took herself to a doctor. “I feel like I’m running out of gas,” she told him.

He ran some tests, and the results were terrifying. Jacki had a large tumor in her brainstem that was pressing against the auditory nerve. “I can’t believe you’re still standing,” the doctor marveled. It would have to come out, but there was no guarantee she would survive the operation or not wake up from it severely disabled. She was referred to a neurosurgeon at Hadassah Ein Kerem, who told her, “You will get through this. But how you will get through this depends on three things: the surgeon, G-d, and your level of determination.”

Her husband replied, “Professor, I truly agree with you. But you mixed up the order of things: G-d comes before the surgeon.”

It was right after Purim, and the surgeon wanted to operate immediately, but Jacki insisted on waiting until after Pesach. She was still in the process of moving houses, even though sometimes the work left her so depleted she developed violent seizure-like shakes.

As frightened as she was of the surgery, she did receive one vivid, nocturnal boost of spiritual reassurance during those days: She dreamed that she saw Rav Mordechai Eliyahu ztz”l, a gadol she had long felt a connection to, standing before her. He told her, “It’s not what it seems; it will be all right.”

Before Jacki was brought into the operating room, she spoke to each family member privately, giving over individual messages of love and encouragement just in case this was goodbye. Then she was wheeled away and put under anesthesia for a 12-hour operation.

When she woke up in the ICU, it seemed like her senses had gone berserk. “I expected pain, perhaps difficulty walking, but no one told me my senses would be scrambled. I would look at a face and it would melt or split,” she relates. “I had to turn off one sense to process with another, like close my eyes to hear someone talking. But I knew that my mind was playing tricks on me because my intellect was intact.” She would see spots, waves, and haloes around things, light spears flying out of lampposts.

For the next four years she was troubled by these visual and other disturbances, which limited her mobility. “At the beginning I couldn’t ride in a car, or look at a staircase. I had severe auditory sensitivity and would shut down and start shaking at weddings or school performances.” She compares it to an electrical system  that’s overloaded by a power surge and flips off. “I finally got myself a pair of Irlen lenses, and they enabled me to get my life back,” she says. “I could walk out my door again.”

The surgery brought her the unexpected gift of being able to experience the sensory overload of children diagnosed with autism and neurodivergence, while retaining the cognition of a woman in her fifties. As she wrote in the journal a friend had encouraged her to keep, “If I had been a child with this issue and someone tried to force me to enter a place with strong, colored, or flashing lighting, I would have had a complete meltdown. As an adult, with self-control and understanding, I could avoid putting myself into situations where I would need to cope.”

It led her to recall a time she had walked with her son with autism to a simchah on Shabbos. One of the lightbulbs in the room was defective and kept flashing. Her son begged her to go home, but as they’d walked a long way to get there, she made him wait.  Now she understood the great discomfort he must have been experiencing.

At another time during her recovery, Jacki felt her body pulling to one side, and found herself rocking back and forth because it seemed to help center her sense of balance. Was it this sort of sensation and correctional rocking the same phenomenon that led autistic children to rock? Was rocking a self-regulating behavior we shouldn’t be rushing to extinguish?

In her journal, she reflected on the error many educators make in trying to shape behaviors that are actually the autistic child’s way of handling intolerable sensory overload: “Do you think a system of rewards and punishments would help you [a child with autism] manage the power surges in your circuit breaker? Might they only help you to curb your reactions temporarily, in order to receive a ‘reward’ or to please others? Would not wanting to disappoint those around you help you to control your reactions to your sensory overload? Would you feel like a failure if you were unable to stop the surges?”


Moving Forward

Jacki’s trials weren’t over with the surgery. She was found to have some small leakage of cerebrospinal fluid at the back of her head; doctors decided operating would have more risks than gains, so they simply keep an eye on it, although it prevents Jacki from air travel and causes considerable vestibular issues. Two years after her surgery, when the inoperable part of her tumor began to grow again, she required painful radiosurgery treatment that involved attaching a metal frame to her head. She still suffers from considerable chronic pain.

When she complained to her doctor about her pain and sensory challenges, he put things into perspective for her. “You’re lucky to be alive,” he said. “These are just side effects.”

An experience some years before her surgery helped her find a way forward. Jacki had developed severe pain from a slipped disk and sciatica, which disappeared after she read Dr. John Sarno’s books on back pain. Now, as she struggled to manage the pain from brain surgery, she decided to apply the same principles. When she feels pain, she checks that her vitals are good, relaxes, hydrates, and tries to de-stress. Doing mitzvos and/or something meaningful for others has also been very helpful. She urges doctors never to tell patients their pain is untreatable and chronic, because it takes away hope and the patient’s motivation to find his own path to healing.

Jacki continues to do her best to heal, to adapt to her sensory challenges, and rewire disturbed neural pathways to gain maximal functionality. Her cognition was blessedly left untouched, allowing her to write a book and a blog, take care of her family, and speak on neurodivergence — now from the point of view of someone who’s been there. She says she’s lost all patience for people’s preoccupations with superficial issues like wealth, appearance, pride, and power. “My focus is on connecting with Hashem, finding out what my true mission in life is, rehabilitation, and raising my children,” she says.

To anyone who has met her, it seems pretty clear that Jacki has already found her mission, at least in part: to serve as an articulate ambassador and advocate for the neurodiverse. In an area that is so dark and puzzling to so many, she bears a torch to help light the way.


On Neurodivergence

Autism has always seemed poorly defined to me: What does a nonverbal child who rocks and tantrums have in common with a brilliant Aspergers-style child who simply seems to lack social intelligence? I was therefore gratified to read that Jacki states in her book, “It seems to me the professionals have clumped together a bunch of symptoms that may or may not be connected or have the same etiology. Hence, there are many different categories of autism, changing definitions, and, recently, the creation of a ‘spectrum’ disorder.”

She says, “I don’t like the medical model, which sees autism as a deficiency. I support a social model that says there are different sorts of neurotypes, each with advantages and disadvantages. Autism isn’t a disease to be eliminated. It’s a neurotype that requires understanding, support, and accommodations.”

Given those supports, autistic individuals can thrive and contribute and even excel at tasks that neurotypical people have no talent or patience for. The Israeli army has recognized this, and has programs such as Ro’im Rachok, which taps into neurodivergent people’s skills to analyze aerial and satellite maps and has expanded to train them in software quality assurance, information sorting, and electro-optics technology. Titkadmu, another unit, is led by Commander Udi Heller, the first autistic commander in the army. To date, Jacki says, Commander Heller has about 500 people in his program.

“Each person has to learn how to drive his own particular engine,” she says. “Autistic and neurodivergent individuals should seek out solutions to assist them with their sensory issues. All children, and particularly neurodivergent children, such as kids with ADHD, benefit from more interactive styles of teaching, like project-based learning, working in groups, and learning skills like time management. The trick is to properly identify each child’s unique challenges and then to provide them the supports they need to enable them to build on their strengths and work toward achieving their potential.”


Jacki’s Advice to Parents Who Receive a Diagnosis

It can be extremely confusing for parents whose child has just received an autism diagnosis. “Rather than trying to make sense of the endless terminology and professional jargon,” Jacki says, “I propose what might be a more useful way to define autism. You can simply set the terminology aside and ask yourself a few questions about your child.”

  • What do I observe is difficult for them? Consider such things as overall communication, sensory processing issues, linguistic issues, motor organization issues, cognitive issues, etc.
  • What do I observe are their strong points?
  • What makes them happy?
  • What is interesting to them?
  • What annoys them?
  • What is the easiest way to connect with them?

She advises that you listen to your child, advocate for him, and follow your gut if a program doesn’t seem right. Don’t neglect the other siblings; in fact, make them part of your team, as she has written: “I remember how incredible it was to watch my younger sons playing with their older neurodivergent brother, who didn’t play in an ordinary fashion when he was young and missed going through a number of typical developmental and social stages. My younger children somehow enabled my older child to ‘relive’ the developmental stages he had missed.”

She advocates taking the time to teach neurodivergent children skills for independence, such as buttoning their own shirts or preparing a sandwich. “Down time” after a structured day is extremely beneficial for them, just as it is for neurotypical kids.

Above all, Jacki says, keep your sense of humor, and adopt an attitude of optimism. Don’t let the “experts” limit your child to a diagnosis. There are new discoveries being made all the time, and new opportunities arising for neurodivergent people to thrive and contribute to society. “Hope and faith are two driving forces that can help empower people to overcome great challenges,” she says.


(Originally featured in Family First, Issue 874)

Oops! We could not locate your form.