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“Let me merit to raise children and grandchildren who are wise and understanding, who love and fear Hashem, who are truthful, holy, and who cleave to Hashem. And may they illuminate the world with Torah and good deeds and all manner of service to the Creator.”
--Recited by Jewish women at candle-lighting on Friday night
| Changing Perceptions |
One of the reasons it’s hard for parents to ‘come out into the open’ is the stigma attached to having a special-needs child. For one reason or another, many segments of our communities aren’t always tolerant, let alone welcoming and accepting, of those who are different.
As parents, we often bemoan the perceived lack of sensitivity, and we wish people would just change their outlooks. We know our kids are great. We know they’re cute and lovable and not just a set of symptoms or diagnoses. So why doesn’t everybody else?
And the answer is, they need to be taught. And the best way to teach is by example.
In the case of R’ Baruch Rabinowitz, shlit’’a, a well-known mechanech and advisor for families of children with special needs, he credits the example of Rav Avraham Pam, zt’’l, with helping change attitudes in his neighborhood of Kensington, in Brooklyn.
“He led the way for us,” R’ Baruch says.
Rav Pam went out of his way to embrace the Rabinowitz’s son, Nota Shlomo, who was born with Down Syndrome and severe medical issues. Nota Shlomo was a ‘regular’ at the Rosh Yeshiva’s side, and their closeness was chronicled in several biographies of Rav Pam.
“It changed people’s attitudes,” R’ Baruch recalls. Now, when young families in the area are blessed with a special-needs child, they are more likely to accept the challenge with love and grace, having witnessed Rav Pam’s connection with Nota Shlomo. “There’s an emotional adjustment, obviously, but people have a more positive outlook because the Rosh Yeshiva in this neighborhood embraced children with special needs.” He points to this change of perception as driving a trend throughout the neighborhood. There are more group homes opening in Kensington, and more families happily agreeing to host residents for Shabbos meals, than there are in other Brooklyn neighborhoods.
R’ Baruch explains that, when a traumatic event takes place, everyone needs an adjustment period and, as was the case in our life, people don’t want to be seen as objects of pity. Either way, it takes time to formulate a response and a plan, “but for the most part – most people who come out are embraced,” he asserts.
“Does the Ribono Shel Olam
want me to hide, or be embarrassed or depressed, or feel ashamed? Avadeh not!”
The problem with staying in hiding, he adds, is that it’s often fueled by a sense of “busha”—shame. And there’s no place for that if one is truly connected to Hashem’s will.
One of the many divrei chizuk—words of encouragement—that R’ Baruch gives over is the following: In many instances throughout Tanach and Tefilla—the bracha of Ahava Raba that we say every morning, for example—the idea of busha is presented as antithetical to bitachon. “We should not be embarrassed or ashamed…for we trust in Your name.” If we’re connected to the Ribono Shel Olam and we recognize that this is His will, there’s nothing to be embarrassed about.
R’ Baruch quotes his Rebbe, Rav Moshe Shapiro, shlit’’a, who wrote in a letter that a special child is, “an incomparably great gift – matana tova she’ain k’mosa.”
“Imagine a Seder table set with all the beautiful utensils – the finest china, the most exquisite silverware,” he says. “But there’s one scratched and dented becher. Someone could say, ‘What’s that doing there? It doesn’t belong on this beautiful table!’ But what if the answer is, ‘That’s The Baal Shem Tov’s becher! Or the Vilna Gaon’s…’ Ah! Now the becher becomes so beautiful – it beautifies the table!
“Your child is the Ribono Shel Olam’s kos shel bracha!” R’ Baruch declares. This idea has helped us tremendously in our journey toward opening up about our situation.
Thanks to the Yedei Chesed weekends, we’ve met many parents—some in similar situations, others who are more secure in their roles—and we’ve learned and been inspired immeasurably. Some parents make a point of taking their special-needs child out on Shabbos or Sundays, introducing him or her to the other children on the block, and encouraging questions and comments. Slowly but surely, the special child becomes integrated into the neighborhood social structure and gains acceptance. It’s a model worth emulating.
“[Coming out into the open] allows the kids and the parents to be admired and praised,” R’ Baruch says. “It helps you build up a reserve of self-confidence… Give your child a chance to interact with the world and gain what everyone gains from positive connections. As Rav Moshe wrote, the child is sent to this world primarily to have interaction and effect on those around him. The alternative is to hold the child in prison, and hold yourself in prison.
“The more we’re out there, and the more we can engender positive feelings in other people, the more we fulfill our own tafkid, and the more the world can change.”
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Many of you may remember us and our story. We have written a number of articles for Spirit! Magazine and we have close relationships with many special-needs families. In previous articles we, as Meira and Mordechai Samuels, have written about the pride, privileges, and challenges we’ve faced raising our son, Yitz, and the impact this has had on our daughter, Miriam.
In truth, those are not our real names. We are Michelle and Yaakov Steinhart, raising our amazing children, Avi and Shaina. Some of you may be wondering, why did we use fake names? Why are we now revealing the truth? And why in such a public forum?
Well, in this article, we’ll explain the factors that fueled our decision to hide, and the factors that led us to change our minds. In the process, we hope you’ll find something that resonates with you and that encourages you to re-evaluate your situation, as well. At the very least, we encourage your feedback—signed or anonymous.
The Early Years
As you may remember from previous articles, our son began receiving therapies at a very early age. We suspected something was wrong when he was just three months old; his behavior was “too good.” He didn’t cry or fuss as much as other babies did, and he seemed content to spend hours on his own. Unfortunately, children don’t qualify for early intervention services for being “too good,” so Avi did not start receiving services until he was evaluated at around nine months old.
At that time, we told only two or three close family members that Avi was receiving services. We were very quiet about it, hoping that he’d catch up quickly and develop like a typical child, so why worry everyone? Deep down, however, we knew this wasn’t a simple delay.
When Avi was about 18 months old, we told another few family members and one or two close friends. We were not ashamed; we loved Avi very much, but we did not want people to think we had a “weird” child, and we did not want anyone talking about us and feeling bad for us. We felt uneasy being open about Avi’s delays, so we kept quiet.
It was very uncomfortable “hiding” all of the therapists who came to our house each day. Neighbors would invite us for a walk to the park, and we’d have to make excuses day in and day out, trying to work around Avi’s schedule of therapy sessions. Keeping this a secret was leading us down what proved to be a very lonely road.
Where Are You Sending?
When Avi was two and a half years old, we enrolled him in HASC/Gan Ezra for the mornings. He continued to receive educational, speech, physical, and occupational therapies at home. At first, we did not want to send him on the school bus. We thought he was too young and would not be able to handle it. Looking back, we were the ones who “couldn’t handle it.” We kept his enrollment at HASC a secret from all of our friends and neighbors.
Then, one day, one of our neighbors said, “I see a bus picks up Avi every day and then brings him home. Where does he go?” We decided to be honest. After all, this neighbor may not even know what Gan Ezra is, and if she does, she still won’t know the issue and how big or small it may be. “He’s going to Gan Ezra.”
A look of horror crossed her face. “Will he ever be normal?” she asked.
Her reaction was so paralyzing and painful; we decided not to tell anyone else.
Seeking Guidance
We are very fortunate to have family members who love us and Avi unconditionally. Since the beginning, they have tried to convince us how liberating it would be to not lie—to be open and proud of our lives. But we were too concerned that we would be seen as ‘nebechs’ and objects of pity.
When Avi was three years old and we knew he had autism, we asked a Rav if Avi should be on a misheberach for a cholim list. We were told that Avi’s name should be on such a list, but only in a shul where nobody knew about our situation. Why? Because, the Rav said, we should keep his diagnosis quiet.
We asked the Rav to explain his reasoning, and he said that Avi could be ‘cured’ at some point (b’ezras Hashem soon), and who knows whether the stigma of having a disability will follow him as he tries to create a normal life.
We tried to explain that it is so hard to hide all the time, but the Rav said we should only ‘come out’ to people who can directly help us or Avi. What about discussing where he goes to school? The Rav told us to be evasive, change the subject, or lie.
We both felt very uncomfortable with the guidance we received, but we agreed not to tell people about Avi and his struggles. As months passed, we found ourselves resentful of the people around us for not being more understanding of our son and his issues. In reality, they had no idea there were issues. Avi looks like a typical child, and unless you understand that his behaviors and lack of age-appropriate communication are due to autism, he would just seem wild, undisciplined, and weird.
One of our neighbors once said, “He is a real vilde chaya.” Another said, “You really have your hands full with that one.” Looking back, what did we expect people to say? We were in hiding, so how was anyone to know?
As time went on, and thanks to a Yedei Chesed weekend retreat, we began to seek advice from Rabbonim who were better-versed in issues of special-needs children. Slowly, we felt a little more comfortable and proud of our mission. But we still were not comfortable telling people. We did not want to be the object of anyone’s pity.
We found that we were increasingly isolating ourselves. We stopped having company for Shabbos meals, because one of us has to follow Avi around at all times, and his behavior can be erratic. We didn’t want to invite people who were not aware or understanding of our situation. We also stopped accepting invitations, because of Avi’s behavior and specialized diet. Taking Avi to shul and chatting during a kiddush was also not possible. We did not get together with friends during the week or on Sundays, because it was too difficult to take him and too difficult to leave him. Slowly but surely, because we were not willing to open up and be honest with people, we were withdrawing from our community and our social circles.
Again, slowly, and with the support of families in similar situations, we began confiding in some friends. Some have been wonderful; they love Avi and ‘get’ him, and they are there to help us in whatever we need. Other friends—and even some family members—just don’t get it. Their comments or lack of concern and interest can hurt quite deeply.
All we need from the people around us is a listening ear and an understanding that life can be challenging for us. Some of our family and friends welcome Avi into their homes. They do not worry about whether he’s dumping out toys or behaving ‘normally.’ When they know we are going through a difficult time with Avi, they call to check on us. It’s comforting to know that we’re loved and that we have family and friends who care. That’s really all anyone can ask for.
Another Secret
When Avi was 5, he left Gan Ezra and was enrolled in a local public school program. We were once again struggling with what to tell people. A therapist working with one of the girls in Shaina’s playgroup saw us at dismissal and said, “Hi! Do you remember me? I was Avi’s therapist at HASC! How is he?” The other parents may have overheard; we just wanted to disappear.
After a few months in the public school, Avi was regressing academically and behaviorally. We withdrew him from the school and began home-schooling. It was quite overwhelming (we wrote about it, under our assumed names, in Spirit!), but we were relieved that we could proudly say, “Avi is home-schooled.” It didn’t have the same kind of stigma attached.
In the years since, Avi has made tremendous progress, B”H, and we have come to accept the fact that he is not attending the local Yeshiva and entering the Parsha contests in the local papers. He still gives us tremendous nachas, though. In some ways, we experience more nachas from him than most people do with typical children.
Avi is now back in public school, and he has additional hours of ABA therapy at home. We’ve recently hired a Rebbe to work with him on basic Hebrew reading and limudei kodesh. When people ask us where he goes to school, we simply say that he has special needs and attends Grandview Elementary. Most people respond kindly and smile and wish us nachas from both of our children. What better bracha could we receive?
We have also come to realize, over the years, that there are people who say hurtful things because of ignorance. We always try to remind ourselves that, Boruch Hashem, they do not understand.
Becoming More Visible
As Avi has grown older and taller, it’s harder to hide his differences. That’s also been a powerful factor in helping us overcome our discomfort and take pride in our ‘specialness.’
This summer, we went on a family trip to Disney World together with Avi’s grandparents, aunts, uncles, and cousins. Even his great-grandmother, tibadli l’chaim, came along. We decided, despite the glaring red flag it sent, to rent a special-needs stroller for Avi, because we did not think he would cooperate and walk around all day.
It was so liberating! People were kinder to us; they did not noticeably judge us or comment or make faces about his behavior or our parenting. It was also more manageable and relaxing for us--not to mention how accommodating Disney World is to people with disabilities. When we came home, a family member offered to buy us the stroller, and we accepted with great appreciation.
 We knew that taking Avi out in a stroller in Orlando was far different from using it in Monsey. If we used it in public, we’d be letting everyone know loud and clear that something was ‘wrong’ with our tzaddik. But when Simchas Torah came along, we knew we had no choice. We wanted him to be in shul, but he couldn’t partake in the nosh and pekkelech because of his restricted diet. The chaos would be overwhelming for him, too. But if he had the stroller to keep him comfortable and some home-made nosh to snack on, he’d be okay.
Avi loves dancing. And he loves Sifrei Torah, as well. When he arrives at any shul, he darts for the aron kodesh to kiss the Sifrei Torah. As a matter of fact, the first time he did this (and without any training or modeling from us), he walked away from the Aron Kodesh backward—somehow knowing innately that this is the halacha. As you can imagine, he’d be thrilled to be in shul for Simchas Torah.
After the hakofos, though, kol hane’arim would be a challenge, with the noise and the crowd and the close quarters, So we did it. We brought our 7-year-old to shul in a stroller and let the world know that we, Michelle and Yaakov Steinhart, have a son with special needs. We were self-conscious, but it proved to be the right move. In fact, Yaakov was leining at the time, and two other men—with whom we’ve davened for years but never shared our story—offered to wheel Avi up to the bima and under the tallis for kol hane’arim. We were touched. People are nice, and people care. All we needed to do was stop hiding.
Bringing It Home
Now that Shaina is 4 years old and fully aware that her brother is different, we need to be proud of him—and celebrate his accomplishments happily--because we are her role models. If we are proud, she will be proud. This is a message we heard many times from R’ Boruch Rabinowitz, the Skverer Rebbe in Boro Park, R’ Chaim Leibish Rottenberg, and other Rabbonim, shlit’’a, but it took a while before we internalized it.
When you have a child who has a developmental disability, Rabbonim and mechanchim explain that this is a special neshama and that Hashem trusts you to raise him or her. If we truly believe this, why wouldn’t we shout it from the rooftops? Hashem has entrusted us with a neshama that is kulo tov—perfectly good—every parent’s dream. Avi is full of happiness, love, affection, joy, and song. He brings us so much nachas. In fact, one of his favorite songs is ‘V’zakeini’—the translation of which appears as the introduction to this article. He is a boy who is truthful and holy, and we daven that he grows up to illuminate the whole world, the same way he illuminates our world.
His behaviors can be challenging, of course, but we work hard to give him every opportunity to reach his potential. He is very special, and he has made our family special.
He has taught us to laugh and enjoy the simple things in life. He has taught us to appreciate a full night’s sleep more than anyone can. He has taught us what it means to appreciate every little accomplishment—and how to see Hashem’s presence in everything we do. Having the opportunity to raise Avi—in accordance with Hashem’s master plan—has given us a heightened sense of bitachon and a true understanding of the idea expressed in Tehillim (32:10), “One who trusts in Hashem will be surrounded by chesed.”
We are better people and a better family because of Avi, so exactly what should we be hiding? How can we expect the world to accept and love our children if we won’t let them?
The first step in getting community-wide opinions to change is to change our own. Yes, there are still those people who will not understand and not support us, but that should not stop us from sharing our lives and benefiting from those who do understand and who will embrace our children into the community. If we are open with the world, educate the world, and show the world how proud we are to be the parents of special-needs children, we will effect change in this world. And that will ultimately benefit all of our children--both special and ‘typical.’
So in fact, we are not Meira, Mordechai, Yitz, and Miriam Samuels. We are proud to be Michelle, Yaakov, Avi, and Shaina Steinhart.
Michelle and Yaakov Steinhart live with their children in Wesley Hills, NY. If you would like to be in touch with the Steinharts you can e-mail them directly at steinhart1@gmail.com.
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