Editor’s Note: Nancy Rubin delivered this D’var Torah February 16 at Beth Sholom Congregation and Talmud Torah, Potomac, MD as part of Jewish Disabilities Month. We share it here with her permission.
Nancy Rubin is a counsel in the corporate department of Skadden, Arps, Slate, Meagher & Flom LLP, specializing in mergers and acquisitions and corporate governance.
Shabbat Shalom. As a corporate lawyer, I am used to speaking to Boards of Directors, negotiating deals or teaching lawyers, but there I am discussing mergers and acquisitions. So when I was asked to speak for this Shabbat, I initially declined as I have never spoken publicly about matters personal to me and my family. However, I decided to speak because I think this is important for children with special needs including my son.
My husband Ben and I have four children, Rachel, Rebecca, Sarah and Josh. Josh has many difficulties – medical issues, emotional issues and learning disabilities. He was born with an immune deficiency that makes him susceptible to certain bacteria. Josh had his first surgery for ear tubes when he was six months old. By the time he was seven, he had had over fifteen surgeries under anesthesia. At one point, he developed a benign tumor that was removed along with part of his ear anatomy. A few months later the tumor had fully grown back. This time the surgeon removed it, as well as a more substantial portion of his ear anatomy including two of his three ear bones to make sure it would not grow back, requiring Josh from then on to wear a hearing aid in his right ear. I remember when he got the hearing aid at age six, I was so sad thinking my son might need to wear this his whole life. At this point I would give anything to have that be his only difficulty.
On the emotional side, Josh was diagnosed early in life with a mood disorder which evidenced itself with aggression and impulsivity. After a lot of trial and error working with different behaviorists and psychiatrists as well as different medications, we have been successful in substantially controlling his behavioral issues for the last several years. Josh also has severe learning disabilities. All of his academic skills are several years below grade level. Josh is now 12 and has been enrolled in seven schools.
So what do you think is the hardest part about being Josh Rubin?
After hearing all this you might be thinking, “Everything seems hard about being Josh Rubin!” But the answer is none of the above. Echoing the speaker from last year’s Jewish Disability Awareness Shabbat, the hardest part of Josh’s life is his social life – or lack thereof. Mainstream children pick up very quickly that children with special needs are different, and generally they have little desire to be with them. The task for us as parents of mainstream children – of which I am one as well – is to teach our children the importance of including children with differences. It took the birth of Josh for me to realize that I had not communicated this message well enough to my daughters, who missed many opportunities to reach out to peers with special needs. I remember inviting for Shabbat lunch a family with a child with autism who is about the same age as one of my daughters. A few days later I ran into the father who said, “You have no idea how meaningful it was to my daughter to go to your house for lunch.” “Oh, it was nothing, my pleasure,” I replied casually. “No really,” he said. “It made her feel so good, and my wife and I thank you for that.” I walked away thinking that that was quite an effusive thank you just for a Shabbat lunch. I really did not get it. Now I get it. And I regret not reaching out more than I did.
Most children’s weekends are packed with birthday parties, play dates and sleepovers. Children with disabilities have very few of these. I can count on one hand the number of birthday parties, play dates and sleepovers combined that Josh has been invited to in the last several years. The world is not an easy place for kids with special needs. And although things are moving in the right direction here, our community is no exception. I was once approached by a parent in this community with a younger child with special needs. He said to me, “When I watch how the boys here treat your son, I worry about what it will be like in shul for my child in a few years.”
Ok, so you may be thinking, “What exactly is she talking about?” Josh loves sports, but often he does not fully understand all the rules, and with his coordination difficulties, he will never be the star player. On many occasions as Josh and I arrive at shul, there is a football or soccer game going on outside. Josh approaches the kids and asks to join. “Sorry, the teams are all set. Sorry, the game has already started,” is the common response. On many occasions, I watch Josh run to approach a group of kids only to have them scatter with one yelling “Run, Josh is coming.” Kids with special needs often don’t get social cues. So if that is not painful enough for a mom to watch, I then realize that Josh does not get that they are running from him. He thinks they are playing tag and starts to run after them. Then there are the Shabbat lunches. One in particular I recall so clearly. We were invited for lunch by a family with a son around Josh’s age. When we got to the table, the boy changed his seat several times to avoid sitting next to Josh, only for Josh to change his seat to be closer to the boy. Later in the meal, Josh asked the boy to go outside to play. The boy said no, so Josh went out and kicked the ball around by himself. Then the boy whispered something in his mother’s ear, ran upstairs, changed into casual clothes and ran outside. Josh thought he was coming out to play with him, but the boy kept running. “Where are you going?” Josh yelled. “To a friend’s house.” “Can I come?” asked Josh. “No” said the boy. Josh walked back inside and quietly took his seat at the table. Ben and I looked at each other — I excused myself from the table, went to their bathroom and cried.
But rather than wallow in our pain, we as parents of children with special needs, stand up, brush ourselves off, and think about what we can do to make our child’s life as happy as it can be. On one occasion at shul, when I witnessed a boy doing the “Run, Josh is coming” thing, I hesitantly approached his mother and told her what happened. She looked at me and said, “I am appalled!” I was worried as to where this conversation was headed. “I am appalled,” she repeated, “at my son’s behavior. I am embarrassed that he acted that way, and I apologize. I truly thank you for bringing this to my attention. I can guarantee you that will never happen again.” I was so touched by her response. I can only imagine the discussion that took place in their home that day, but she was right. Not only did it never happen again, but to this day her son is extremely kind and inclusive of Josh, always saying hi when he sees him.
Things have definitely improved for Josh here.
In part because his peers have matured and now “get it.” They are starting to understand that they should include him, even if having him on their team is not going to help them win. One friend of mine who has a son a few years younger than Josh told me that he talked to his son about Josh, and explained that he has issues and should be included, not avoided. There are also some wonderful people in this shul who are so good to Josh. When kiddush or lunches are being prepared by caterers, the Sisterhood or for the Sephardic minyan, Josh is often allowed to help. I remember one occasion when I was looking for Josh and went into the kitchen. Signature Caterers was busily preparing for a kiddush lunch for the shul. I saw about six men on their staff lined up in front of a table plating salads – and there in the line I saw Josh. He, like the others, had on plastic gloves and was part of the team plating salads. I was so touched that I hugged Larry and thanked him so much for letting Josh help. Now I was that over-effusive parent who thanked me for the Shabbat lunch. But Larry understood – he got it. I have thanked Barbara, Tracy and Larry privately, and now I have the opportunity to tell you publicly how appreciative Ben and I are that you let Josh help.
So what can we as parents and shul members do to be sure all of our kids feel part of our shul community? We can take a moment and say hi and ask how they are doing. It’s OK if they don’t always answer you back; it is still meaningful to them. If you get an honor in shul and you see a child with special needs, invite him to join you to open and close the Ark or stand next to you for your aliyah. If you see children excluding others or being cruel, be proactive and say something. As many parents have told me, being excluded and left out is not something experienced only by kids with special needs. Lots of kids feel that here, and that is something we all should work on with our children. I often say to the kids, “Hey, this is a Jewish community and we all need to be kind to each other.” In doing so, we are setting an example for our children to reach out to them. We can also talk to our own children to help educate and sensitize them to the situation. Explain that some children are a little different, they don’t get all the jokes and they won’t hit the home runs, but it is kind to include them. Many kids who have differences are in schools in which they are surrounded by other kids with varying needs. It is really good for them to socialize with mainstream kids, so they can learn to model more appropriate behavior.
Communication is very important in both directions. Parents of other children in the congregation should not feel shy to ask about the situation or how to make things work. For example, our son was once invited to a peer’s paintball party, and the mother asked if we would send a teenager along. We were happy to do so and thrilled that Josh was included. It was much better that she invited him and asked for help rather than not invite him, deciding it might be too difficult for him to handle on his own. Communication is important the other way as well. Parents of kids with special needs should be open and realistic about their children. If an invitation is made, they should be proactive and make a plan that sets their child up for success. An hour or two, for example, may be better than a four hour play date.
Then there is Friendship Circle. For those of you who are not familiar with Friendship Circle, it is an organization run by Chabad that pairs up teenage volunteers with children and teens with special needs. They have activities almost every Sunday. Many of your children volunteer at Friendship Circle, which is wonderful, because they are assisting the children, and giving them the respect and dignity they, like all of us, are due. When I go, I see so many young people from this community, it is truly beautiful. Friendship Circle is an amazing organization and believe me, your children are doing the right thing. You as parents should be very proud of them, and you should also be pleased with yourselves for encouraging it. The emotional intelligence volunteers develop through an experience like that is invaluable for their own growth and success in life. One thing I tell the Friendship Circle volunteers though – “Don’t forget your buddy when you step outside of Chabad.” If you see the kids in shul or in the neighborhood, a hello is very meaningful, and if you can include them in your games that is a really great thing to do. The Shamash program that has just started up at our shul is also a wonderful program of which we have already seen the benefits.
I would be remiss if I did not mention another dynamic of children with special needs, namely, their families. Having a child with multiple needs puts enormous stress on the child’s parents and siblings. There are so many tough decisions to be made and so many unknowns about what his future will be like. For years I could not even say the words “residential facility” or “group home” without getting teary. Thank G-d we have been able to handle Josh’s issues so far without going that route, but who knows what the future will bring? Will Josh be able to support himself? Will he be able to live on his own? Could things improve enough that he could even get married and have a family? These are all questions that loom over Ben and me all the time. And if the answers to those questions are no, will we be able to put enough money aside to support him in the future so he can have a lifestyle similar to the ones his sisters are likely to have? As Josh’s troubles unfolded over the years, I was always afraid that something might arise that Ben and I did not agree on the best way to handle. Luckily, my fears in that regard were unfounded, as he and I have always been on the same page with Josh. One example is Josh’s schooling. Ben learns Torah every night, and I know when Josh was born Ben dreamed of spending time learning with his son. However, early on it became clear that Josh would not be able to handle a dual education. Yet I feared that it would be hard for Ben, as a rabbi, to give up that dream and take Josh out of the Hebrew Academy. But Ben wanted the best for Josh and accepted the need for a school change without hesitation. Ben is an unbelievably wonderful father to Josh. I thank G-d every day for giving me such an amazing husband as we support each other and work as a team in facing this lifelong challenge. Ben has always said that our responsibility as parents of Josh is to do everything we can do to make his life as normal as possible, and together we live by that credo.
Then there are the siblings. When you are one of four children, you are entitled to 25% of your parents’ focus, time and attention. But a sibling of a child with disabilities does not get his or her fair share as some of their 25% must go to their sibling. It is not fair, and not always easy to accept but that, unfortunately, is the way it is. It’s hard growing up with a brother or sister with special needs. When I was a teen having a party, I did not want my little sister hanging around. I would yell to my parent’s ”Mom, get her upstairs, this is my party!” And that is a totally normal emotion for a teenager to have and a totally normal thing for a teenager to say. But our girls on their own most often resist doing that and not because Ben or I ask them to include Josh. They know Josh rarely goes to parties and he is so excited to help make the guacamole and set up the chips and dips, and so excited that teenagers are coming over. So they let him stay, even if that means he might be talking non-stop to their friends. While it is not easy for siblings of kids with unique needs, they do learn to be much more sensitive to people with differences. Our daughters have all been Friendship Circle volunteers. Our daughter Sarah’s current career goal is to be a psychologist or psychiatrist for families with kids with special needs. Sarah spends a lot of her time outside of school tutoring and taking care of children with special needs in our community and in local shelters. A dear friend of mine once recounted to me a conversation she had with our daughter Becca. Becca told her that she needed to make a lot of money when she got older. My friend was puzzled as she knows we teach our kids to choose careers they enjoy and will want to spend their life doing, and not base that choice on money. She said she asked her why. To which Becca responded, “After my parents pass away, I will need to support Josh.” I was so moved by this. I told Becca that no, that was not her responsibility, Abba and I would take care of that and she should pick a career she likes regardless of the money. Our daughter Rachel recently told me that when she gets married, she plans to have Josh move in with her and her husband. Again, I was so moved but said “No, you will have your life which will be very busy when you start a family.” She responded, “Mom, an adult should not be living with his parents.” While I never would have chosen to have this challenge in life, one silver lining is the positive impact it has had on our girls. Siblings are so incredibly important to a child with a disability who may have few friends. Unquestionably, the best thing that ever happened to Josh is having Rachel, Becca and Sarah as his sisters. They mean the world to him.
The challenge reaches beyond the nuclear family. Our extended families provide enormous support to us. I speak with my mother almost every day and one topic we discuss on every call is Josh – how his day was, did things go smoothly for him. Ben’s dad always asks about Josh and consults with experts he knows to help guide us. There were so many decisions to be made over the years as to how to handle his multitude of troubles. Ben and I are truly indebted to our families for being there for Josh and for us. My family knew that giving this talk would be tough for me and so my mother and brother are here from New Jersey and my sister is here with her son from Boston.
One example of how our family has pulled together for Josh is his Bar Mitzvah. As I have sat in this sanctuary over the years, I have watched many of your children beautifully read the Torah and Haftorah and lead davening. Alongside the happiness I felt for you, I always had an ache inside wondering what Josh’s Bar Mitzvah would be like as he cannot read any Hebrew and cannot even read the transliteration. We decided to have his Bar Mitzvah on a Sunday as we did not think whatever he would do could be done in front of the whole congregation. Ben picked the first date Rosh Chodesh fell on a Sunday after Josh’s 13th birthday. We started working with him two years before his Bar Mitzvah date, June 9 of this year. We taped laminated cards with his Torah portion and the brachot to our kitchen cabinets. Every Friday night starting in June 2011, as we eat dinner, we go around the table and each of the six of us chants Josh’s Torah reading with the correct troupe. We started with one line and added a few words as Josh mastered a section. We are proud to say that Josh has now memorized in full the two brachot, as well as the first aliyah for Rosh Chodesh Torah reading. Now, when possible, he practices it in front of the Torah after kiddush on Shabbat so he will get comfortable with the room and chanting standing in front of the Torah.
I would like to end with a story of something that happened last Rosh Hashanah. I davened in the Abrahmson Hall. The Ark was open and everyone was standing. All of a sudden Josh walked to the bimah, which was great – I enjoy when Josh stands at the bimah and experiences what goes on in shul. But then he continued walking to the Aron Kodesh and stood right in front of it. Then I wasn’t so happy – I got nervous about what he might do. My seat was pretty far away, so I walked up to the mechitza. I am not sure what I thought I would do if he did anything wrong, was I going to vault over the mechitza? – but I figured I better get closer. He just stood there inches from the Torah, and I envisioned him taking it out and rolling the scroll down the aisle. Rabbi Antine saw my anxiety and motioned to me not to worry, he would keep an eye on him. A friend, who happened to be near me read my mind and put her arm around me. Josh then leaned forward, kissed the Torah as he does in the Sephardic Minyan, closed the doors and walked away. Rabbi Antine followed him, took his hand, and together they walked back and reopened the doors. Crisis over, I exhaled and walked back to my seat. As I approached my seat a woman came up to me full of emotion and a big smile. She put her hands on my shoulders and said, “Nancy, I know exactly what you are feeling right now. I remember the first time my son was given the honor of opening and closing the Ark. I had goose bumps I was so proud.” I nodded politely and thought to myself, “You have absolutely no idea what I am thinking right now, and it definitely is not that.” I was actually thinking “Thank G-d a potential disaster was averted.”
If there is one thought I would like you to take away from my talk today, it is the following. It is very hard to be a parent of a child with special needs. It is very hard to be a sibling of a child with special needs. And it is very hard to be a friend of a child with special needs. But as hard as each of those things are, they pale in comparison to how hard it is to BE a child with special needs. So it is incumbent on all of us who have been blessed by G-d to be born without the challenges these children face, to step up to the plate and do what we can to make their lives just a little bit easier and a little bit happier.
Thank you for listening to me speak today. And thank you all for reaching out to the kids with differences in our community and helping to teach your children to do so as well.