We often hear about the high spiritual level of the generations that came before us as compared to our own. So it was refreshing to find out that our community has improved in relation to people with special needs. “It is amazing how much the attitude of the world towards children with disabilities has changed for the better in the last 10 years,” says Mrs. Rochel Vim. “Today, there are many more programs and opportunities, and there is less embarrassment and less stigma involved in having a child who is different. When my daughter was much younger, people clearly had no idea how to relate to her and did not want to have much to do with her, but now there is more acceptance in the community as a whole.”
True Friendship
There is a big difference between being friends with somebody as a chesed and a genuine relationship. Many girls who have gotten to know Chedva, Mrs. Vim’s daughter, have developed a true friendship. “The girls who spend time with Chedva have really taken chesed to a whole new level,” says Mrs. Vim. “They respect Chedva for who she is, and want to spend time with her, even when her behavior is challenging. A child will also appreciate and sense when the caregiver really cares about them as an individual. As Chedva told me, `Nechama Leah is my BFF, my best friend forever.’ Although Nechama Leah is already married, her relationship with Chedva is so strong that Chedva is sure that she is still her BFF.”
Then there is Elisheva Katz, who is the first child with Downs Syndrome to have gone through all 12 grades at Bais Yaakov. “Elisheva had tons of friends in school,” says Mrs. Karen Katz. “She keeps up her relationships through emails and phone calls, even though the girls are in seminary now. These girls are real friends. It started out as a chesed but turned into true friendships.”
“Bais Yaakov has really been amazing,” says Mrs. Mindy Cohen, Elisheva’s teacher. “Anything that is good for Elisheva we are allowed to do. We have our own classroom, and Elisheva also takes part in whatever classes we decide are appropriate for her. The teachers are comfortable having her here, and the girls treated her as a regular class member. This year we are doing job training in the Ner Tamid Montessori school, and it is wonderful to see how she is accepted as a teacher’s aid by the children and the other teachers.
Appreciating People Begins at Home
Learning to appreciate people as they are begins when children are very young. Parents can create an atmosphere of acceptance in their homes, and can demonstrate how to behave toward people who are a little different. Says Mrs. Gross,* “When I was young, we were told to cross the street if we saw anybody a little different. My mother was so uncomfortable with people with disabilities that she taught us to stay as far away as possible. I have worked on myself to teach my children differently. Once, my son did not want to hold the hand of a boy with a disability in shul on Simchas Torah. I said, `You know, his hand feels the same as your hand. You don’t have to be afraid of him.’” Mrs. Gross continues, “Today, it is politically correct to be nice to people who have obvious disabilities, but there are also children who look normal but act different. What about them? You have to show your children that you are friendly to everyone. We have to strive to teach our children and ourselves to treat everyone with kindness and respect.”
Learning Acceptance at School
Unlike the past, when special children were educated separately, many children today are included in regular classrooms for at least part of the day. Interestingly, it seems that, with a little bit of effort on the part of the teacher, it is not very difficult to do, and it benefits both the children with disabilities and those without. “It is amazing how perceptive children are,” says Mrs. Gold*, a preschool teacher. “It is not necessary to make a big fuss and tell the children a lot of details – just a gentle hint and the children immediately pick up on the way to be kind to a child who may not be as articulate as they are. Ninety-nine percent of the time, the children are careful to treat their classmate the way they have observed their teacher treating her.”
Mrs. Greenberg,* who teaches an older class, explains how she worked with her class to teach them to be more accepting and kind to Chani, a child who has obvious learning disabilities. Once, when Chani was not in class, she read a story, which led into a discussion about how important it is to include everyone and not to make fun of other people. “It was heartwarming to see how the children responded and took my mussar to heart,” says Mrs. Greenberg. “We adults can take a lesson from them. Chani used to sit alone during lunch; now the girls include her at their table.” Mrs. Greenberg bought special games for recess, and often gives one of the most popular games to Chani, and the other girls naturally gravitate toward her to play with it.
Mrs. Rivki Danzinger, mother of Esther, a five-year-old with special needs, shared with me a mitzva note she got from her daughter’s playgroup morah a few weeks ago. In the note, the teacher, Mrs. Mintz, described Esther’s success in participating with the group during free play, and how she, the morah, rewarded all the children for including the whole playgroup and not leaving anyone out. “The letter made me feel so good,” said Mrs. Danzinger, “for a few reasons. I appreciate the time and effort that the morah made to include my daughter. My daughter was not disturbing the class, so the morah could have let her play by herself instead of encouraging her to play with the other children. I admire the thought she put into educating the children about the importance of including everyone and the extra finishing touch of letting me know what was going on in class in such an upbeat, special way.”
I have included the letter that Mrs. Mintz sent in a sidebar because I think we can all learn from it.
Adults Continue to Learn
Compared to children, we adults may not be as comfortable relating to people who look or act differently. Mrs. Brown,* the mother of Simcha, a child with a disability, told me about the time she took her children to a concert. Chaim Schwartz,* who was sitting next to Simcha, stared at him, then turned to his mother and said, “Let’s change seats.” Mrs. Schwartz was so embarrassed that she quickly changed seats with him and looked straight ahead, embarrassed to meet Simcha’s mother’s eyes. “Of course, that made me feel uncomfortable, too,” said Mrs. Brown.
What could Chaim’s mother have done to make the whole situation more comfortable? I asked. Mrs. Brown answered, wisely, “She could have said to Chaim, `There is no reason to change seats. Let’s say hello to Simcha. I am sure he is a very nice boy. You don’t have to be afraid to sit near him.’ And Chaim’s mother did not have to be embarrassed to face me. I am aware that my son looks different, so she does not have to be hesitant to acknowledge that fact. I would have appreciated hearing her teach her son a more gracious way to behave.”
We Can All Be Thoughtful
Family friends can be a tremendous support to families with special children. “It makes me feel so good when people appreciate my child,” says Mrs. Esther Ward. “I love it when they say hello and speak directly to her when we meet. It makes me realize that they know and respect her as an individual. It also makes my other children feel proud to have her in the family.”
Mrs. Vim adds, “It was my daughter’s birthday recently, and many people remembered and sent her a small gift or a balloon. A member of the community took the trouble to send her a birthday card and $5. My daughter’s face lit up. I felt good that somebody thought she was so important. There is a lady in the JCC who remembers which day my daughter comes and often has a sticker or small present for her.”
Friends can help in other ways, too. Most people avoid getting involved with kids fighting on the block or in carpool unless it is their child who is the bully or the bullied. Yet why not protect a child who is not your own, even if it is not your problem. Mrs. Vim told me that children were bothering her daughter, so that she could not leave her outside alone. She was so appreciative when her neighbor, Mrs. Chana Marsh, appointed herself as the protector. Whenever anybody on the block was bothering Chedva, all the children knew that Mrs. Marsh would be there to take care of the problem. “That was a true chesed, because it showed me, the parent, that my child is the community’s child and deserves to be protected,” says Mrs. Vim.
Mrs. Ward described a gift to her daughter that made a tremendous impact. Every Shabbos, Mrs. Ward takes Miriam to shul in her wheelchair. Once she got a phone call from an acquaintance, Mrs. Zipporah Freedman, who wanted to bring over a present, an ArtScroll siddur with pictures. “Why should Miriam be the only one in shul without a siddur,” said Mrs. Freedman. Mrs. Ward protested that they already had that kind of siddur at home, but Mrs. Freedman insisted on coming over that Chanuka evening to give the siddur to Miriam. She came into the house while Mrs. Ward was feeding Miriam. She sat down next to her, showed Miriam all the pages in the siddur, and explained the tefilos to her. Miriam is non-verbal but is able to understand most of what people say.
Miriam really enjoyed the attention and listened attentively. But the ramifications of this present went much further than that. Mrs. Ward’s son was watching this whole event and was very impressed. That night, Miriam was crying before she went to sleep, and her brother showed her the siddur again and sang songs from the davening. Miriam fell asleep peacefully. Another day, Mrs. Ward was trying to daven in the morning, when Miriam began to demand attention. Her son suggested, “Mommy, why don’t you daven from Miriam’s siddur together with her and then she won’t cry.” And that is exactly what happened. Mrs. Freedman’s small gift changed the perspective of family members.
A Community Organization
Mrs. Ward’s experience with her special daughter was the impetus for a new organization to help families with special needs children. Menucha, founded and run by Mrs. Ward, promotes community awareness and education and operates many creative and supportive programs. For parents, there are Mom’s night out, support groups, melaveh malkas, and lectures. During school vacations, it provides special trips, performances, carnivals, and mini-camps.
During Menucha’s evening respite program,** the special needs children are picked up at 4:00 p.m. and transported to the Suburban Orthodox shul. The high school girl volunteers feed them supper and do homework with them. They familiarize them with davening, teach about Yamim Tovim, and generally create a Jewish atmosphere. Since many of these children attend public school, they do not get this content during the day.
Some girls in the community have also started a Shabbos respite program, subsidized by Menucha and run by the coordinator of Menucha’s evening respite program. About once a month, the girls invite from three to five children with special needs to spend Shabbos at their home, together with one counselor for each child. This gives the parents a respite on Shabbos, and the counselors and children have a really great time. They take the children to the park and to shul. Mrs. Vim told me how much her daughter Chedva enjoys being invited for Shabbos. “She likes to be like everyone else in the family,” says Mrs. Vim. “The other children sometimes get invited for a Shabbos, so we appreciate it when she also has the opportunity.”
In addition to respite programs, some girls and boys go to the homes of the children and provide one-on-one care and entertainment. One mother mentioned how much she appreciated the two eighth-grade boys who came to her house to play with her son on Shabbos afternoon. A young woman goes once a week to take care of a three-year-old boy and give his parents a much needed break. Mrs. Ellen Edinger told me how much she appreciated regular visits by steady volunteers. “It is so helpful to know that certain volunteers are going to come at a certain time, so that I can plan my schedule accordingly.”
Menucha is the catalyst for relationships that can last a lifetime. Many times, when Mrs. Ward calls to offer a volunteer for a family, she is surprised to hear that the volunteer she sent four years ago is still coming. “Beautiful relationships are cemented and are sometimes even passed down to a younger sibling,” she says. “The volunteers of Menucha become close to the children they take care of and visit them at other times and even go so far as to invite them to their chasanas when they get married,” says Mrs. Ward.
The Jewish Caring Network also helps families with special needs children, through Big Brothers/Sisters, Sunday Funday programs, hospital visitation, and birthday bash days. They provide need-based gifts for items such as special strollers, youth wheelchairs, and special needs toys that enhance children’s development.
Always Room for Improvement
Working on this article has been an eye opener for me. When all the mothers I spoke to stressed the much improved attitudes of others, I wondered, wasn’t there anything negative? There was. It turns out that the most common source of pain for families is going out in public with their special children and not being acknowledged by others. I asked one mother if they really wanted me to smile or start a conversation if I didn’t know them at all. I had always thought it would be phony and just make them feel worse.
This mother’s explanation clarified things for me: “When your child looks and acts different,” she said, “you know that people are noticing you anyway, so you feel like a spectacle if they just look away and avoid you.” She suggested, instead, “Smile at us, include us, speak to us and to our children. Hold the door open when we are coming through with a wheelchair; offer to watch our child if we need to leave for a minute. Don’t think that if you don’t look at us, we don’t see you. And if you are curious and stare, at least do so with a smile. Everybody needs chizuk (encouragement), and everybody can give chizuk. Since we are noticed anyway, it is important to make sure that we are noticed in a positive way.”
Much has been accomplished in our attitudes and actions towards those with disabilities, yet we can always continue to improve. Part of being a community is taking responsibility for all the children in the community, feeling that they belong to all of us – that just because Hashem chose a particular family to take care of that special child does not absolve the rest of us from the task. We can do so much to help and support each other in raising our families, and I hope this article will contribute in some small way to that end.
The writer would like to thank all the mothers who spent time talking to her and sharing stories and information.
*a pseudonym
**The respite program often has a need for substitute drivers when the regular driver is not available. If you are interested, please call 410-258-0974.
A Mitzva Note from a Morah
Dear Totty and Mommy,
I want to share with you something special that happened in playgroup today! For the first time, I played dolls with other children. When they invited me to join, I was shy and hesitant. I wanted to continue reading books by myself on the couch! But Morah encouraged me to join and explained to me that I would enjoy playing with the other children, and so I agreed. I picked out a doll from the doll bucket and Shevy helped me dress her. Rochel Shaindel offered a pillow for the doll and helped me cover her with blankets. Then Chani came over and asked me if I want to dress the doll again. I enjoyed playing dolls so much. Morah let Yosef give out treats to everyone because she was so happy that we all played so nicely and included each child so that no one in our playgroup would be lonely.
Love,
Esther
