Nurturing My Special Needs Child
When faced with zero educational options for her autistic son, one mother created her own.
It has been said that raising children changes the tapestry of the soul. Kathy Laszlo can testify to that fact. The birth of her firstborn son, Dani, set in motion a chain of life-altering events that brought Kathy from Hungary to Toronto, and brought Judaism into her life. Along the way, Kathy became a trailblazing advocate for her child and other children who shared his challenges.
Kathy, a small, dark-haired woman in her late forties, co-founded DANI (Developing And Nurturing Independence), a nonprofit, Toronto-based organization for young people with varying degrees of cognitive and developmental challenges. In the six years since its inception, the organization has aimed to serve the spiritual needs of these special individuals, and to provide a nurturing environment where they can attain their fullest potential.
Anything for My Child
Budapest, Hungary. Kathy was 24 when she and her husband, Andrew, welcomed their firstborn son, Dani. Almost from his birth, Kathy could see that all was not well with Dani. The milestones that mothers anticipate with such pleasure – crawling, walking, and enunciating their first word – were not achieved. Dani's pediatrician assured them that this developmental delay was the result of poor eyesight and muscle tone. "He's too good," the doctor excused the lag, "he rarely cries." Kathy longed to believe the doctor, but even though she was an inexperienced first-time mother, she sensed that the reality was very different.
While many mothers might speak of being determined to help their children, not too many would go as far as Kathy did. In 1988, a year prior to the fall of the Berlin Wall, she and her husband hastily packed their bags and their child and escaped through the Iron Curtain to Vienna, never to return. They took up residence as Jewish immigrants and were placed on the waiting list for emigration. A Viennese pediatrician correctly diagnosed Dani's problem as autism. This diagnosis, Kathy says, influenced their decision to move to Canada, a country that provides governmental health coverage.
Though the government provided the Laszlos with health coverage, those first few years were far from easy. In Hungary, Kathy had been educated as an accountant; in Toronto, lacking both the knowledge of English and Canadian certification, she was forced to work as a cleaning lady for three years. In the evenings she took English classes. Her husband, who was unemployed, stayed home with Dani those first few months.
Although we didn't we have money for tuition, it was no problem.
At the insistence of doctors, Kathy and Andrew were directed to find an appropriate school for Dani, who, at the age of two and a half, was still neither walking nor talking. It was then, Kathy believes, that she saw clear signs of God's intervention. One day Andrew entered an Orthodox Hebrew day school, only to discover that the secretary was Hungarian. This secretary directed him to Zareinu, a Jewish institution that provided personalized therapy and treatments to children with physical and developmental disabilities.
"We weren't Orthodox and we didn't we have money to pay tuition," she explains. She and her husband were amazed when neither of these issues posed a problem.
At first, the welcoming attitude seemed suspicious to the Laszlos. "With our Communist mentality, we were convinced that there must be a catch," Kathy explains. "After all, nobody does something for nothing. But what choice did we have?"
They enrolled Dani, anticipating a "catch" that never materialized. To their amazement, they soon discovered that the teachers and therapists outnumbered the students two to one.
Dani loved Zareinu. He blossomed as a result of the warmth and professional attention. Within a short time, together with Kathy's at-home therapy sessions, he achieved real progress in mobility and sound pronunciation. During this period, Kathy, "out of respect," as she puts it, began providing Dani with kosher sandwiches for school. That small step led to kashering her kitchen. It wasn't long before Kathy started to feel part of a community.
A Clue to the World Inside
By the time Dani was four and a half, he could communicate his wishes by pointing and grunting, but was still unable to express more complex thoughts. One day, though, rather astonishingly, Dani typed the word "frog" onto a computer. "Frog" was a computer game Kathy and her husband were playing, and by typing out this word, he was communicating his desire to join the game.
It was a breakthrough of sorts. "Until that time, nobody knew his mental capacity; we weren't sure precisely what he was absorbing," Kathy explains. Once he was given a mode of communication, Dani quickly became more forthcoming. When Kathy, out of frustration, asked him one day why he was still not toilet-trained, he responded by typing, "My body doesn't work." Subsequent testing revealed that Dani was incapable of feeling intense pressure, and as a result was unaware when he needed to use the bathroom. After treatment, he was finally toilet-trained.
The computer communication clued in Dani's parents to some of the inner workings of their child's brain. They were taken aback when Dani began typing a strange array of sentences – for instance, on the subjects of economics, geography and politics. At that point the Lazslos began to realize that Dani was regurgitating and transposing, verbatim, sentences directly out of magazines and books. Their very challenged child apparently possessed a photographic memory. Later, that gift would enable Dani to learn his bar mitzvah parshah in one week.
Autism, Kathy points out, affects all manner of communication and social skills and possibly intelligence. Many have sensory-related disabilities. Sounds, as an example, may be experienced as louder than normal and can be quite disturbing. Black-and-white images are generally better tolerated than colored ones. Some autistic individuals see dots and dust particles floating in front of their eyes. As a result, they begin waving their hands in an attempt to push them away. They may also exhibit obsessive tendencies. As an example, Dani, whose symptoms fall within the mild range, loves all things round and spends much time spinning them. He himself enjoys spinning around and has excellent balance. "What he is doing is demarcating his personal space," Kathy explains.
All these conditions can be treated by various means, including behavior management therapy. "For example, when we go to public places where I know there will be loud noise, Dani knows to bring along an MP3 player so he can listen to music and 'block out' the surrounding noise."
The year Dani turned eight proved to be a milestone for the Laszlo family. Kathy gave birth to twins. Dani began to verbalize actual words, the result of years of painstaking effort. But it was a third event that profoundly altered Kathy's personal trajectory. She recalls the first Shabbos she brought Dani and the twins to Toronto's Aish HaTorah Centre: "Dani was absolutely mesmerized by the davening. He literally clung to his siddur. He did not want to leave." From then on, the Laszlos made sure to attend shul on a weekly basis. One Shabbos, Kathy began to do what she had rarely done before: she picked up a siddur and prayed.
It was the same congregation that later saw Dani celebrating his bar mitzvah in front of 150 guests who included therapists, doctors, and friends – all those who impacted his life so significantly. "When he read his bar mitzvah portion and gave his speech, there were no words to express the extreme gratitude we felt to God and the community," Kathy remembers. It seemed almost natural that she concretize those feelings of gratitude with the decision to become Shabbat observant.
This stalwart determination and commitment, regardless of personal or financial consequences, is what marks Kathy as one of Toronto's most formidable advocates for the rights of children and young adults with developmental challenges. Her role as advocate grew and changed along with her son.
They instituted a "reverse integration" policy into the school.
After graduating from Zareinu, Dani became one of 20 special-needs children attending a local public school. Kathy fought for their rights to a proper education and won. She was fortunate, she claims, to have worked together with a forward-thinking teacher who instituted a "reverse integration" policy into the school. By turning "Room 137" as it was called – the classroom that housed these special-needs children – into a social center, she was able to attract regular students who dropped by to eat their lunch, partake in the free soda, and socialize. "In this way, they began to see these children, first and foremost, as people much like themselves."
When Dani graduated high school at age 21, Kathy joined a network of parents seeking alternatives for their children. Kathy desperately sought out frum programs geared to special-needs young adults that would allow them to grow religiously and continue to find meaning in their lives. To her utter consternation, Toronto offered no such programs.
"Until DANI came into existence, there was no organization in Toronto available to help young adults with these particular challenges." So she, together with Susie Sokol, a mother with a then-20-year-old special-needs daughter, decided to create the missing programs. They began by organizing a successful day camp. Shortly afterward, DANI was established.
Today, DANI provides programming five days a week that includes Judaism classes, choir, arts and crafts, and a variety of other activities. But soon the program will move to the next level by affording these young adults the chance to give back to the community that has been so supportive. DANI will soon be distributing hot lunches prepared in its kitchen to a Jewish high school in the area. These special-needs young adults will be actively engaged in preparing the foods and in delivering the meals.
Kathy's plans do not end here. In the near future, she hopes to establish a coffeehouse that will be professionally managed by special-needs adults, particularly those with social difficulties. "If they are capable, we must give them a chance to succeed," she says with her typical determination. She envisions this coffeehouse as a hub for mothers and as yet another opportunity for reverse integration to take place.
Kathy looks back and contemplates the distances she has traveled, both personally and professionally, and realizes she would never have gotten to where she is today if it hadn't been for Dani. "I see him and the other young people like him working so hard every minute of the day to measure up to us. It is a humbling experience," she says.
Over the last two decades, Kathy feels that she has gained access to Dani's inner world, and a better understanding of the world experienced by an autistic individual. This is a world that, she insists, shares many similarities to our own. "There is logic to Dani's behavior that must be grasped," Kathy explains.
Further, she believes that individuals facing these kinds of challenges exist on higher spiritual plains than the majority of us. "Perhaps it's their lack of ego that marks them as more spiritual," she suggests. As a result, they can teach us a great deal about a spiritual connection to God.
Kathy's insights about her son's inner world have enriched her own internal landscape. "I could look at other families that do not have special-needs children and choose to be bitter and envious," she reflects. "But that would bring me to a dark place within myself. Instead, I have learned to place my trust in God and let go."
To Give Life
Kathy is eternally grateful for the unconditional acceptance and support that she and her family found within the Jewish community. She, in turn, repaid their kindness in myriad ways. Perhaps the most dramatic was her recent donation of a kidney to a 20-year-old special-needs woman. By going public with her decision to donate, she not only focused attention on the dire need for kidney donations, but also underscored the necessity to see each individual – no matter what their challenges – as equally entitled to a chance at life.
When Dr. Saul Quint and his wife, Robyn, received the startling news that their daughter Terri was in end-stage renal (kidney) failure, their world came crashing down. They understood that Terri could be confined to a lifetime of dialysis treatments and that such a "lifetime" lasts, on average, five to ten years – unless a kidney donor could be found. Even then, the waiting time for kidneys from a deceased individual is five to seven years, and 90 percent of potential recipients do not live that long. Still, they held out hope that a family member would qualify as a kidney donor for Terri. This proved not to be the case.
Each individual, regardless of ability, is equally entitled to a chance at life.
Given that Terri needed to remain on the home dialysis unit for eight hours at a time, she would be unable to attend the program for developmentally disabled young adults at DANI. A call to Kathy was in order, since she was running the DANI program. But that phone call garnered more than sympathetic acknowledgment. Within moments of hearing of Terri's predicament, Kathy, who has Type O blood and is a universal donor, offered to be tested as a possible kidney match.
"I just kept thinking that Terri could just as easily have been my child. I believe that God wanted me to do this," Kathy explained.
Once the decision was made and gratefully accepted by the Quints, Kathy, who works as an accountant for Aish HaTorah International, underwent a series of tests – blood work, EKG, MRS, as well as interviews with doctors, psychologists, and social workers – to determine her suitability as a donor.
In June 2010, accompanied by twins Michael and Sarah, Kathy settled into her room at the Toronto General Hospital in preparation for her surgery. "My twins were born at the Toronto General. I felt as if I had gone back to give life once again." The three-hour surgery went exceedingly well. Kathy was later informed that immediately upon being transplanted into Terri, her kidney began functioning. There was absolutely no rejection.
The very next morning, Terri, unaided, walked into Kathy's hospital room – her face pink, healthy, and smiling. "Thank you for the kidney," she said. Four days later, Kathy went home and resumed working at her computer. There was no interruption to her work.
"Every person who donates a kidney does an incredible chesed (kindness)," Menachem Friedman, program director of Renewal, told Family First. Renewal is a nonprofit organization whose purpose is to help those suffering from kidney disease, but its main goal is to educate potential donors and match them to a recipient for a kidney transplant. According to Friedman, there are currently over 100 recipients of all ages on their list anxiously awaiting the news that a match has been found.
"A kidney transplant potentially triples the lifespan of the recipient," Friedman explains. "The body can only tolerate dialysis for on average five to seven years, whereby a kidney donated from a live donor will last on average for 20 years – approximately twice as long as a kidney taken from a deceased individual."
Renewal facilitates this process by assisting donors and recipients toward a successful surgery. It also helps financially by covering all donor expenses. Last year Renewal arranged for 20 transplants between unrelated people.
Every healthy person can potentially become a donor. Are there any future risks to oneself in giving away a kidney? Kidney disease, Friedman informs, usually affects both kidneys simultaneously. On the remote chance that a donor should one day be in need of a kidney himself, he is placed at the top of the donor list. It is also quite amazing that studies show that kidney donors live longer than the average person.
An expanded version of this article originally appeared in Mishpacha magazine.
On March 28, 2011, DANI will be holding its 5th annual gala evening at the Richmond Hill Centre for the Performing Arts in Toronto. For info, contact: 905-731-6606 or email@example.com