PROUD PARENTS OF A SPECIAL NEEDS CHILD

Nothing prepared Zecharia and Mushky Landau, a young couple in Kfar Chabad, for the challenge that changed their lives. Nothing on their baby’s angelic face foretold his future. * What do you tell the family? How do you contend with the stares? How do you maintain normal family life? * Zecharia tells Beis Moshiach about their special needs child

By Elad Yitzchaki

Photos by Devorah FreimanFrom the outside, the treatment center of Yad L’Yeled HaMeyuchad (Helping Special Needs Children) looks like any other house on the narrow one-way street in Beit Dagan. A bamboo fence surrounds the perimeter and on the gate hangs a small sign Merkaz Regesh.

Shneur Landau and his father Zecharia were waiting for me in the entrance to the site. I said hello and Shneur connected with me immediately, holding out his little hand and pulling me toward the exit, ready to go anywhere with me. Shneur is diagnosed with moderate retardation. He is four. After hundreds of hours of therapy and physiotherapy he walks on his own. He still doesn’t speak beyond a few words but he is a sweet child who wins your heart as soon as you meet him.

“Should we show Elad your therapy room?” asks Zecharia. Shneur responds unintelligibly. He was preoccupied with a somewhat complicated task of holding a box with a small toy guitar in it, a prize he got from the therapist for his progress.

Zecharia is deputy director of the non-profit organization and he took me on a tour of the place. “There used to be just that house,” he says, pointing at a small building at the edge of the yard. “But slowly, there developed a great demand and we are constantly growing.” On his left are three wooden structures which lend a pastoral feel. “Those are new therapy rooms that we just finished building.”

Shneur pulls us toward a path on the far end of the yard. “You want to show Elad the animals?” Again, an unintelligible reply and a strong pull forward. Zecharia leads us toward the animal corner.

“We have all kinds of animals which are used in therapy. We once had goats but we moved them to our stable in Tzefaria.”

THE REALIZATION HIT

Zecharia and Mushky married six years ago and live in Kfar Chabad. Mushky is the sister of R’ Menachem Mendel Blinitzky. He is the director of the organization and she was a key operative in the organization from its inception.

About a year after they married, their oldest, Menachem Mendel, was born. A year later, his brother Shneur was born.

“At about three months, we began to notice something wasn’t right,” says Zecharia. “We noticed that he wasn’t lifting up his head, he wasn’t responding, he didn’t move on his own. He didn’t do simple things that every baby does. We decided to take him for a check-up at our family doctor.

“The doctor checked him and everything seemed fine. She couldn’t pinpoint a specific problem and advised us to wait. At six months, they sent us to a child development center at the Asaf HaRofeh hospital. We started physiotherapy and went for neurological and genetic testing to identify the cause of his delays.

“Some more months went by and the physiotherapy did not help much. The developmental delays became more significant. At one check-up we were told by the geneticist that this wasn’t just a delay and we needed to do more thorough tests.”

Shneur turned one-year-old. Mushky’s maternity leave had extended far longer than anticipated and she had to return to work. Shneur had made no progress and he was placed in the local daycare center with the three month old babies.

“At this point, we realized he had a serious developmental problem but still thought he was a regular child. We thought that with some help and therapy we would be able to help him and bridge the gap. We asked the city council for an aide to stay with him. The one in charge went through the papers and asked, ‘Who says he needs an aide? Maybe he needs a maon shikumi (care center)?’

“I knew what a maon shikumi was from my work for the organization and immediately said, ‘What?! A maon shikumi is for special needs children. Shneur just needs some help, that’s all.’ But more time went by with no progress and at the child development center they told us we needed to place him in a maon shikumi.

“That’s when it hit us. Putting him into a maon shikumi was when we realized that our son wasn’t a normal child. It was a shock. It looked like a well-appointed preschool with pictures and toys and teachers, but along the length of the wall in the hallway were numerous medical devices of all sorts. You walked into a classroom and saw children with many limitations and severe handicaps. It was a real shock.”

WE REALIZED OUR LIVES HAD CHANGED

Isn’t there a stage where the parents are told – your son is diagnosed with x-y-z?

“It really depends on the type of problem. Children with cerebral palsy or Down Syndrome are usually diagnosed at birth. Autism is diagnosed at three or four. But the difference is that with all these conditions there is a reason for the limitations. Autism, Down Syndrome, or CP are the reason for the child’s limitations. When it’s mental retardation, there is no diagnosed reason for the problem. You see that the child has a problem and when you cannot pinpoint the reason, you give it a generic description – retardation (nowadays they call it “intellectual developmental disorder”).

“When we got the final diagnosis it was after we already knew the situation. We had already been to the maon shikumi and the official diagnosis did not help us in any way other than enabling us to proceed to the assessment boards, Bituach Leumi (national health insurance) and government offices.”

The switch from the daycare center in Kfar Chabad brought up a vital issue. The Landaus had two options, a chareidi institution or the maon shikumi at Asaf HaRofeh Hospital which was closer to home and most importantly, far more professional. They consulted with rabbanim including R’ Mordechai Shmuel Ashkenazi a”h who paskened that since the early years are critical, it was more important for him to be placed in a more professional place. At an older age they could be more particular about a religious education.

How did you feel when you realized that Hashem had turned you into parents of a special needs child?

“At first it was an utter shock. The fact that both my wife and I have a background of working with special needs children intensified the blow because we know what it’s about. We knew what we were getting into and what awaited us a year, two years, ten and twenty years down the road. We realized that our lives had changed and nothing would be as it once was.

“We knew quite well the nature of the challenges involved, starting with attending family events, how to tell our parents, relatives, friends, people on the street who stared, and concluding with dealing with thousands of interventions and the demands of everyday life with a child with limitations.

NOTHING TO BE ASHAMED ABOUT

Zecharia and Mushky made a number of important decisions that would make it easier to deal with the new situation.

“We decided we would not be ashamed. We are not at fault; we did nothing wrong. Shneur is the gift we got from Hashem and there is nothing to be ashamed about. We knew that so many challenges awaited us that did not depend on us, so it wasn’t necessary to add a constant tension in hiding the truth.

“Shneur had an unusual baby walker. We would walk with him in the neighborhood and people would look at us anxiously, fearful about getting too close or meeting our eyes but we encouraged them to ask questions and get to know Shneur directly.

“We decided to focus only on what enabled him to make progress. If it didn’t help him advance, we didn’t concentrate on it. We stopped all exams and genetic testing that tried to find a reason for his condition. It wasn’t something that would help our son and that was our only interest.

“Likewise, we decided that we would try anything that could help him make progress. Nearly every day he undergoes supplementary therapies. This age is critical and every therapy is important.”

INTENSIVE INVOLVEMENT

Does your personal situation affect your work in the organization?

“Of course. From the beginning, as soon as we personally experienced the feelings and needs of the children, the parents, and the families, we started to focus our services toward these areas of need. For example, we expanded the project called, ‘Circle of Chesed,’ in which girls tutor the child once a week for two hours. Until then, it was a side project. But then we suddenly realized how important it is. Those two hours are sometimes the only two hours a week in which the parents can breathe. I, for example, use those two hours to cook for Shabbos. I know that whatever I manage to get done in those two hours when Shneur is with the tutor is what will get done, and what not, not.

“Or, for example, personal support. My wife is in charge of the project of supporting new mothers who are dealing with a special needs child. They speak among themselves one-on-one or in support groups. The support in coping is very important and contributes so much to parents.

“In general, supporting the family is very important. You cannot minimize the importance of a supportive environment and we invest a lot into this at the organization.

“We recently organized Shabbatons for couples only. Several dozen attended. I insisted on couples only, with no children. The only item on the program was a lecture on Shabbos afternoon. The goal was to rest.

“On Motzaei Shabbos some couples came over to me and tearfully said that for the first time since their special needs child was born they sat together at the Shabbos table, just them, and enjoyed their relaxed meal without disturbances.

“Having a special needs child entails such intensive work that there is never a dull moment. Our Shneur, for example, although he is only four, has no awareness of danger and of other things normal children his age know. The mother of a normal child can go down to the yard and sit on a bench and chat with her friends while her child plays. The mother of a special needs child can’t do that. A child like this needs constant supervision and needs to be played with; you cannot leave him alone for a minute.

“Hence the importance of respites for parents and even for siblings. We have special Shabbatons, retreats and day camps throughout the year.”

PROMOTING THE REBBE’S APPROACH

The daily challenges and her work to help families by way of the organization led Mushky to open a page on her social media in which she tells about Shneur’s development and challenges. The page is friended by thousands of parents of children with special needs from all segments of Israeli society who get vital information and share the challenges and the demands of raising a special needs child at home.

The number of followers has turned it into a platform for spreading the wellsprings and conveying Chassidishe messages.

“The Rebbe has a broad body of responses on the topic of special needs children. This is collected in a terrific booklet that was published by R’ Eliyahu Wolf, a father of a special needs child. When we bring these responses up in various forums with people who are not yet religious, it is received with great excitement.”

For Shneur’s fourth birthday, they made a party in a park in the center of the country and invited many parents of special needs children.

“It was a huge kiddush Hashem. We made a Hakhel gathering and spoke about the special qualities of these children in light of what the Rebbe says, and the people responded very positively. The feeling that we are in this together unites everyone.”

RESPECT OUR PRIVACY

In conclusion, Zecharia would like to convey a message to the extended families and friends of parents of special needs children:

“Support is very important. The families don’t need advice or comments. They need help. It is important that you be there for them to help and to support, without expecting anything in exchange and without expecting them to include you.

“Oftentimes, the extended family or close friends really help with all their heart, but they expect to be in the inner circle that makes decisions, or at least to get frequent updates. They think that if they drive the parents to the hospital or for a check-up, waiting for them half a day, and bringing them back, that they deserve to be given a report. We say, no. It is not always comfortable for parents to talk; they don’t always want to share everything. Respect their wishes and give them their privacy. Let the parents share what and when is comfortable for them.

“This upcoming year we plan on expanding our activities to grandparents of special needs children. Often, with a great desire to help their children or their special needs grandchild, they mix in or try to do things behind the backs of the parents.

“Here too we teach them to respect their children and let them handle things their way. These are sensitive matters and it is important to allow the couple the space they need. Our motto is: Help where you can – support the family, enable the parents to have time to themselves, and give them the feeling that you are always there with them and for them.”