As a child growing up in a family with seven children, I chose eight as the number of children that I would like to have someday. Eight would mean that each child would have a built-in partner to hold hands with on a family trip.
My husband and I were blessed with our seventh child when I was midway into my forty-first year. The years passed and my dream of raising eight children did not look like it would materialize. But, when I was almost forty-seven, G-d sent me Chana.
Light brown hair, beautiful blue eyes, a sweet smile, a pleasant disposition—how could one not adore her? Often when the older children would come home from school or when my husband Abe would come home from work, I would relate stories about sweet Chana. “Today Chana crawled,” “Guess what? Chana sat up for ten seconds,” “Today Chana pulled herself up while holding onto the couch.”
When each of our children had a first—a first smile, a first tooth, a first rolling over—I would get very excited. I was blessed to be home with the children and see most of their firsts. Each child has at least one baby book in which I chronicled the daily miracles of their first years. But with Chana the “firsts” produced a special joy and appreciation.
Chana is actually not my biological child, even though I call her “my baby.” She is the child of Naama and Shmuel Tzuriel who live in Alon Shvut in Gush Etzion. Chana has Down’s Syndrome.
More than three years ago I noticed an ad that a family was looking for someone to work part-time with a special needs child. Little did I know that this small ad would change my life. I called the phone number and spoke to Naama. She told me that they were looking for someone three times a week to work with their baby Chana who has Down’s Syndrome. Chana would be placed in a local child care center. The Israeli government provides forty hours a month for an aide, or as it is called in the United States, a shadow.
Chana, who was eight months old at the time, came with her mother to our home in nearby Rosh Tzurim. I am crazy about babies. I passed the informal interview. That fall I began working with Chana in the child care center in Alon Shvut. She was one of seven babies in the group.
As a child I had had limited contact with children with Down’s Syndrome or any other kind of handicap. My first contact was with John John, our non-Jewish next door neighbor’s grandson. He and his first cousin Becka would often come with their parents to visit their grandma. Some of my siblings and I would play with them. I knew that he was “slow” and that was the extent of my knowledge at the time.
During the summer between sixth and seventh grade I attended a Jewish Community Center camp called Camp Mitzva. Bob, our non-Jewish Italian camp head, arranged for an outing to a Pennsylvania state park. On the way, without warning and without any preparation, he had the bus stop at a state institution for the mentally ill and for the mentally handicapped. It was a traumatic experience for me. When the institutionalized children saw our group, some of them approached us. I tried to get lost between the other campers. I was so frightened that they would touch me. They looked different from me and difference can be frightening and threatening. But there was Jodi Rifkin. She was a large going-into-eighth-grade camper who exuded self-confidence. With self-assurance she walked up to one of the children with Down’s Syndrome, shook his hand and said hi. I was impressed and envied her abilities. But I was still scared that they would touch me. Years later I still steam when I think that an adult camp head could have brought us to the state mental hospital without any preparation.
In the not so distant past, even in many developed countries, many people with Down’s Syndrome were placed in institutions. My oldest brother is a psychologist who worked in the infamous Willowbrook hospital in Staten Island. Following exposes about the poor treatment and conditions, the State finally closed it down.
Fortunately, much progress has been made in the field of special education. This progress, along with change in attitudes towards children with special needs, helped introduce ideas such as mainstreaming children with special needs into regular classrooms.
My experiences with Chana have been wonderful educationally, emotionally and spiritually for me. Though trained in social work, I have a great interest in the field of special education. My work with Chana has widened my horizons. I have accompanied Chana and her mother to therapy sessions in occupational therapy, speech therapy, special education, computer therapy, physical therapy and hydrotherapy. In addition her mother takes her to music therapy.
Chana’s daily schedule sometimes makes a university student’s schedule seem light. Naama chauffeurs Chana to Efrat, Kibbutz Kfar Etzion and Jerusalem for her various therapies and nursery. With the immense amount of time and caring that is showered upon Chana, one might think that she is an only child and that her mother is a stay-at-home mother. The fact is that Naama works as a nurse doing night shifts, her husband works in computers out-of-town and when Chana was born she was child number eight. Two years later, almost to the day, Chana’s baby sister Ayala was born. And by the way, years ago Chana’s parents adopted a young girl who is legally blind and has other disabilities as well.
Their tremendous mesirat nefesh, self-sacrifice, is not something new in the family. Naama’s mother, who was widowed in her late forties, and was left to raise ten children, helped many others and one year was Israeli Mother of the Year. She runs a branch of Yad Sara, which loans medical equipment, out of a storeroom in her house in Alon Shvut.
My work with Chana during the first year entailed a lot of physical work on her part and on mine. At the age of one, Chana did not do all the things that come easily and naturally to many infants. She did not know how to crawl, how to roll over, how to sit, how to stand, how to walk, etc. With guidance from her varied therapists I helped her in achieving these feats.
Part of the work I did with her was massages. During the first year of my work with Chana I gave her a body massage with oil and told her which part of her body I was massaging. During the first and second years I also did mouth massages to aid her in speech. Since Chana is hearing impaired, her speech development suffers. Keeping hearing aids on a baby is a difficult feat. More than once or twice I found her without the hearing device and a hunt for the pieces was conducted. (As I write this piece, Chana is in the hospital in order to undergo surgery to place tubes in her ears. I hope and pray that it will be successful.)
During her second year she was in a child care center with eleven other children. My primary work with her was in cognitive skills, social interaction and in fine motor skills. Ira, from Gan Harmony, a network of nurseries that has both handicapped and non-handicapped children, came twice a month to give me work strategies.
At the age of three Chana began attending a private nursery in Kibbutz Kfar Etzion. Despite the schlep involved, her parents wanted her to be in a nursery that did not have the standard thirty-five children. Unlike the child care center, whose workers were mainly women who had a high school education or less, Chana’s present nursery school teacher, Adi, happens to have a degree in special education! The staff includes a lovely assistant named Sara and two energetic volunteers, Maya and Efrat who are doing their national service. The day is so full with activities that I have to squeeze in the private learning time that I do with Chana, which includes word recognition. Chana especially loves when kibbutz member Yehuda comes and works with the children in the small zoo which is attached to the nursery. There is even an alpaca and Chana can say it.
During the beginning of this year I was caught off guard during a morning mifgash, gathering, with all the children. The nursery school teacher turned to me and asked, “Adina, can you explain why you work with Chana?” I quickly thought of a suitable answer to tell two to four years olds. I replied, “Chana is the littlest in the nursery (in size) and she needs me to help her. I hope that you will help her too.” Thank G-d there are children who help her as well.
And Chana’s being there has helped others. Batya, a special ed teacher from Gan Harmony, comes twice a month to give me guidance. She arranged for some of the Gan Harmony staff to run a program about differences and similarities. The impetus for the program was not just because of Chana. The substitute nursery teacher is from Ethiopia and her complexion is very dark. Some of the children were having difficulty with someone who looks so different.
The children were divided into three groups and took turns going to different stations. At one of the stations the leader was talking about differences. She mentioned something different about some of the children in the room. Then she said, “And look at Chana!” I cringed, not knowing what she might point out as Chana’s difference. She continued, “Chana is the only one with glasses.” I breathed a sigh of relief. (It reminded me of the time that we were with our youngest children at a Shabbat bar mitzvah. We walked out of shul and I noticed a teenager in a wheel chair. It looked to me like he had cerebral palsy. Suddenly one of our younger boys pointed at the boy in the wheel chair and, before I could stop him because of my dread of what he would say, he exclaimed, “Look! He has a kippah [the large Bucharin type] like the one I have!”)
One of the ways that Chana has helped me is in my spiritual growth. Patience is a middah, a characteristic, that I have been tackling for decades. Imagine singing a children’s song hundreds of times about putting your hands on your head, on your shoulders, clap one two three. That’s one of the activities that I did in front of a mirror with Chana. I was so excited the day she finally did the motions on her own. The repetition of many things with Chana helped to make a marked improvement in my patience. This has had a positive effect upon my family, upon friends and upon those around me.
Chana is blossoming. She initiates social interaction, she expresses her desire to take part in games and she even misbehaves! My deep connection with her continues to grow. I often dream about her, I often think about her and I sometimes pop into her home when I am in the neighborhood.
A real eye-opener for me was during the first year I worked with Chana. Tirza, a friend of Chana’s family, who has a doctorate in special education, volunteers with Chana on Friday mornings. Even though I don’t work with Chana on erev Shabbat, I came once to receive guidance from Tirza. Tirza wrote her doctoral thesis on the subject of people’s expectations of children with Down’s Syndrome. She told me that not everyone with Down’s Syndrome is retarded. She knows a girl with Down’s syndrome who is at the top of her class scholastically. Tirza claims that the more people expect of a child with Down’s Syndrome, the more that child will achieve.
Like Dickens, I have great expectations.
The words of this author reflect his/her own opinions and do not necessarily represent the official position of the Orthodox Union.
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