Jewish Life with Special Needs Children

    January 2012          
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The Levitt Family including Adam who Stands on the Left


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Raising Adam

By Lawrence Levitt

It was a typical day for a green, 25-year-old intern at Bellevue Hospital in New York City. On this day, I could expect multiple admissions with a multitude of problems, emergency pages about ill patients from the floor, handling blood counts and urine tests, wheeling patients to X-Ray, and following our attending physician on rounds. After what would likely be a sleepless night, I would finally go home at 6 p.m. the following day, after 35 hours on call.

But this would not be a typical day. Perhaps because I was afraid to ask for the day off, a request not made for which I've never quite forgiven myself, my wife, Eva, walked alone across the street from our apartment to the New York Hospital. She was about to deliver our first child.

By her calculation, she was already one month post-due date, although she'd been advised that she'd probably made a mistake in her dates. But Eva knew better. Not one to back down automatically to authority, she'd eventually persuaded her obstetrician to induce labor. I was under the impression that her mother was going to accompany her to the hospital, but I found out later that Eva did not tell her about the admission because "I didn't want to produce unnecessary anxiety." That was vintage Eva.

Midmorning on February 9, 1966, while I was admitting a patient with pneumonia from the Bellevue emergency room, I got a call from Dr. Langer, Eva's obstetrician. In a surprisingly quiet voice, he told me that she'd just delivered our first son, whom we'd already decided to call Adam. I was thrilled. Then, his voice turning tense and strained, he said: "Adam is having convulsions and you need to come to the hospital immediately."

Shaking, I got coverage from a colleague, ran into the snowy morning and jumped into a cab. When I got to the hospital, I found Eva in her room sitting up in bed, pale, groggy and tearful. "Oh my God," she sobbed, "I can't believe this is happening." She managed to tell me that a pediatrician was in the nursery treating Adam for his convulsions.

Rushing there, I saw a tiny, blond-haired infant seizing in the pediatric intensive care unit, surrounded by doctors and nurses. After what seemed like an eternity but was probably only 15 or 20 minutes. Adam's seizing stopped. A tall thin, gray-haired gentleman came over to talk to me. He was Dr. Altman, the pediatric intensive care specialist. He told me that Adam had suffered birth anoxia (lack of oxygen) because the umbilical cord had been wrapped around his neck. The lack of oxygen had, in turn, caused the seizures.Adam's brain had been injured. His diagnosis: cerebral palsy.

My heart fell into my stomach. "I'm sorry," Dr. Altman said in a matter-of-fact, not particularly sympathetic voice. He turned and left. I stood alone, hardly breathing, struggling to take in the reality that my life--and Eva's-- had just changed forever. Adam left the hospital after two weeks and when the nurse handed Adam to Eva , the reality of the change in our lives really sunk in.

Adam's early milestones were delayed. He did not sit up until nine months, and did not walk until he was nearly two years old. He could not say single words until he was about two and a half. "Why us?" we often asked during Adam's early years. I thought about the other young doctors in the hospital whose wives had recently given birth. They passed around photos of their healthy children with obvious pleasure, announcing their child's latest accomplishments with pride. I tried to be happy for them, but privately, I felt shattered.

Adam developed behavioral problems early on, becoming frustrated and often shrieking with anger at the slightest provocation. I vividly remember one occasion in which Eva, Adam and I were standing in the supermarket checkout line. Suddenly Adam, age 6, began screaming at the topic of his lungs for no apparent reason. Out of the corner of my eye, I saw a number of shoppers openly staring at our son as we tried to calm him down. I felt embarrassed. "It's okay," I found myself saying to the nearest onlooker. "He just sometimes behaves this way. It will pass." His doctors predicted that these behaviors would decrease as he matured, and so they have. But at the time, I struggled with shame--and sometimes even anger-at Adam's behavior, even though I knew he couldn't help himself.

At some point, Eva and I accepted the fact that Adam would be different from other children. I don't remember exactly how and when we came to this place of acceptance, but I believe it occurred gradually as we met other families from Adam's special classes--families who faced similar challenges and met them as best they could. We realized that we were not "the only ones." At the same time, I was developing a neurology practice and seeing patients with diseases such as multiple sclerosis, Parkinson's disease and epilepsy. Their diseases could not be cured or reversed, yet most of them seemed to accept their chronic conditions with something like grace. I learned from them. Adam was who he was, and I loved our son.

We thought hard about whether to have another child. Could we bear having another special-needs child? Several physicians reassured us that what happened to Adam was unlikely to recur. And so, with some trepidation, we decided to try to have another baby. Our second son, Marc, had an uncomplicated birth. After taking many more deep breaths, we had a third child, Lora, who was likewise fine. Despite our joy and relief, it turned out that raising two other children along with Adam was not easy. The other two often felt jealous of the special attention that we gave Adam, and had a hard time accepting it. We tried our best to give each of our children a fair share of our loving attention. We succeeded sometimes.

During the early part of Adam's childhood, we were encouraged by his slow but real progress in language and ability to care for himself. But by age 10, he'd reached a plateau. He could take care of his personal needs, eat by himself, dress himself, and go to the bathroom. But he continued to speak in only the briefest sentences, read at an elementary level, and remained unable to do simple math. Improvement ceased. We began to realize that our son would need special care for the rest of his life. Regardless of what we tried to do for him, Adam would never be fully independent. Recognizing this reality required another step on our journey of acceptance.

As he grew into adolescence, Adam became tall and handsome, with rusty blond hair and blue eyes. He walked with a slight limp, but otherwise looked like any other teenager. When he turned 14, a friend suggested that it might be a good idea to send him off to summer camp. Initially, we resisted the idea. "How would the other children react to him?," we wondered. "Would he be safe?"

Then we learned about a camp in Springfield, Massachusetts called Camp Ramah, which included 450 normal children and a special program called Tikvah (meaning "hope" in Hebrew), with 50 handicapped teens and young adults. We'd heard that the normal kids were particularly kind to the special-needs children and included them in a variety of activities, including swimming, dancing, hiking, and arts and crafts. We became hopeful. We signed Adam up.

Nonetheless, driving up to the camp and dropping Adam off was something we will long remember. We worried: Would he really be OK? Would the other campers really treat him well? We felt much better once we arrived and the Tikvah Program Director, Herb Greenberg, walked up to us and put his arm around Adam. "Don't worry," he told us gently. "We'll take good care of him," Much to our surprise, Adam waved to us and said," Bye, bye, Mom and Dad." Then he began to walk up the hill with Herb.

On visiting day, we went back up to the camp and watched Adam perform in a play with the other campers. He sang in the chorus and wore a big smile. The camp indeed was a wonderful place. Everyone ate together and participated in Friday night services. Everyone went on outings together, and the Tikvah campers even joined the others in " color war," in which the whole camp is split into two groups, and the teams compete against each other in various activities, especially athletics..

Toward the end of Adam's camp experience, Herb suggested that we begin thinking about a permanent placement for Adam, once he reached early adulthood. He reminded Eva and me that we would not "be around forever" and that Adam might be better off with people of his own abilities rather than staying home with us, isolated from his peers. We thought about this very seriously. Our son needed to develop as much independence as he could. At the same time, we continued to feel the urge to protect him. The question nagged: Would he be really safe and happy without us?

Ten years later, when Adam had reached his mid-20s, we realized that we had to act. We needed to make arrangements for our adult son to live out of our home, with others with similar disabilities. After much discussion, Eva and I and two other families , each of whom also had a special needs child, decided to found a group home in Allentown, Pennsylvania, for handicapped Jewish adults. We called it Tikvah House.

Now in its 19th year, Tikvah house functions much like a family--and a very active family at that with three residents. Each day, Adam and his fellow residents go from Tikvah to a sheltered workplace in the community; Adam folds laundry. On their time off, they participate in a variety of activities, including dances, movies, bowling, and walks in the park, accompanied by staff members. There are trips to Philadelphia. For Friday night dinner, residents are often invited to the homes of others in the community. One of the community's members throws an annual summer picnic and swim. In every way, Adam seems to thrive there.

Adam's participation in the group home has also allowed Eva and me to live a more normal life. Now, we often have dinner out with friends, go out of town on weekends, and take vacations. We have more space in our lives. We're more relaxed. The truth is having a special-needs child poses an extra strain on one's marriage. In the early years of raising Adam, there were certainly a strain on ours. I found myself less patient than I should have been, and less appreciative of Eva's enormous contribution to the effort of raising Adam. Several couples whom we know well, and who have special-needs children, have divorced. That pattern is unfortunately true nationally. I think we have managed to thrive, and maybe even strengthen our marriage, in spite of much pain and stress, because we were able to accept Adam's challenges quite early in the process. Another big plus, as far as I'm concerned, is having a partner who is as courageous and resilient as my wife, Eva. She exemplifies grace under pressure.

Every summer we go to the New Jersey shore with our children and grandchildren. This year, while I was writing this essay, I asked our daughter Lora, now a mother of three, what she remembers most about Adam's growing up. She answered immediately: "Adam's Bar Mitzvah."

She was referring to the ceremony, remarkably similar to Confirmation in the Catholic Church, in which the candidate, after several months of prayer or Bible study, approaches the pulpit for the rabbi or priest to bestow a blessing. For months before the occasion, Adam had studied the prayers he would recite. He knew them very well. Finally, the day arrived, and we proudly gathered with more than 100 people in the congregation. When the moment came for Adam to walk to the pulpit, he called out hoarsely from his pew, "I'm not going."

A hush came over the room. A good friend of ours tried to calm Adam and persuade him to walk up the aisle. "I'm not going!" Adam repeated in an even louder voice. The congregation sat perfectly still. Then our new rabbi, Yehuda Pinsky, came off the pulpit and walked over to Adam's pew. As the rabbi stood over Adam and said the appropriate prayer, there was not a dry eye in the house. Rabbi Pinsky then returned to the pulpit and said quietly: "What Bar Mitzvah is really about is the preparation that takes place, not the words the boy says. The milestone that occurs as a boy moves from childhood to adolescence." He closed by asking us to remember to treat each other--whether "normal" or "special-needs"-- with sensitivity, consideration and respect.

Adam remains a most loving and kind individual. We often say he's the "best-natured Levitt." He very often has a smile on his face, and upon meeting someone, he will say warmly: "Good morning. How are you? I'm Adam."Impishly, he often calls me "Dr. Levitt." We cherish his amiable, good-humored self. He has taught us to value the truly important things in life--family love,a caring community, and God's beauty in our midst.

Every Friday night, Adam joins the family for our traditional dinner and participates in reciting the Sabbath prayer over the bread and wine. Every Sunday morning, I take Adam out for breakfast at a local diner, which he enjoys immensely and talks about a few days beforehand and for at least a day afterwards. "Will we be going out for Sunday breakfast?" he asks me each Friday and Saturday. Then, on Monday, he calls and says, "Sunday breakfast was good, Dr. Levitt!"

"Yes, Adam," I say, beaming into the phone. "It was wonderful."

Lawrence P. Levitt M.D. is Senior Consultant in Neurology Emeritus at Lehigh Valley Hospital in Allentown,Pa. He founded the neurology division at that hospital and assisted the effort to transform it into one of the largest teaching hospitals in Pennsylvania. He is retired Professor of Clinical Medicine (Neurology) at Penn State College of Medicine. He is co-author of Neurology, one of America's most popular neurology texts. The book is now in its eighth edition, and has been translated into eight foreign languages including Russian, Chinese and Japanese. He is a founding Trustee of The Dorothy Rider Pool Health Care Trust in Allentown.


from the January 2012 Edition of the Jewish Magazine

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