A Home for All at Emanu-El
This article originally appeared in our May/June 2019 Bulletin.
By Beth Pilchik
Temple Member and Religious School Parent
On February 9, 2019, we celebrated our older son Miles’s bar mitzvah. We chose Temple Emanu-El for many reasons: Our friends belonged and liked it, religious school was one day a week, everyone seemed nice, and a family could have their bar mitzvah service with only their child. This was a relief to me, as I didn’t have to worry about our family dynamic impacting another family’s experience. You see, our younger son Matthew lives with autism, and living his daily life is hard enough. He has trouble eating, sleeping, and focusing; being part of a group activity is always challenging for him. Going to Temple and being part of his brother’s bar mitzvah — or having one of his own — was something that my husband Evan and I really didn’t have time or energy to think about. However, on February 9, during Miles’s beautiful and special Havdalah service with Rabbi Davidson and Cantor Glazman, that thought changed, and I have my 13-year-old son to thank for that.
As parents of a neuro-typical and a special needs child, ensuring one child’s needs doesn’t supersede the other is very important. It’s almost impossible but always on our radar. For Miles’ bar mitzvah, Evan and I immediately focused on what was important to us: Making sure Miles had the bar mitzvah he wanted while ensuring Matthew could be a part of it in some capacity.
Everyone had a job – Miles would attend Religious School, meet with his tutor and the clergy. It was terrific watching our son prepare and mature. We didn’t really know what to expect of seven-year-old Matthew, who didn’t like crowds or music, but we were going to put in place whatever tools we needed to help Matthew support his older brother. For our family, this meant hiring an Applied Behavior Analysis (ABA) therapist Matthew knew to be with and support him, creating a social story that helped Matthew understand what was happening from start to finish, working with the Temple so they knew Matthew might arrive and exit for breaks and most of all — enjoy this moment as much as possible.
While we experienced the joy of watching our son be called to read from the Torah, the experience reinforced why Temple Emanu-El is our temple and introduced our family and friends to the fact that this community is open to all.
Usually when we are at temple, we sit in the back row. Matthew colors, builds LEGOs or plays a game on his iPad. During family Shabbat Kodesh services, Matthew will often draw his own answers on the graffiti wall, his shoes are usually off, and he is often running. For everyone, from Saul and Rachel to Rabbi Davidson and Cantor Glazman, meeting Matthew’s special needs were never a big deal. To me it was the world, but to them it didn’t matter, and at every turn we were met with care and Matthew was met with respect.
In the months leading up to his Bar Mitzvah, Miles and I discussed his Mitzvah Project. He explained to me that after visiting the Special Olympics with Temple Emanu-El’s Mitzvah Corps and seeing adults with special needs, he wanted to raise money for Matthew’s school, Manhattan Children’s Center, and help them build a new upper school location. To execute his project, Miles created a video game-a-thon where for every dollar he raised, we allowed him to play one minute of video games. Yes, we permitted him to play video games for every dollar he earned. Miles created social media invitations and updates and helped raise over $2100 for Manhattan Children’s Center. What surprised us all was that strangers donated hundreds of dollars to support my children.
For Matthew, we prepared him as much as we could. He practiced wearing his suit and reading his social story. I soon realized that Matthew understood that Hebrew was a language we speak at temple and Miles will be reading from a scroll. He would need to take pictures and then go to a party. As we prepared him to stand on the bimah in front of everyone, we realized Matthew knew that this was important. However, Evan and I also knew that whatever was going to happen was going to happen and we would ensure this was Miles’s moment.
I really expected Matthew to sit in the back with Missy, his therapist and date for the day, but he didn’t; he sat with us in the first row. When he had enough, he and Missy left. They exited toward the right of the door of the main sanctuary, and he lost it. I mean, LOST IT! He screamed and yelled and had enough. While others could not hear him, I could, but was smiling knowing he was safe and Miles was doing his thing.
When it was time to pass the Torah from generation to generation, Matthew was not there. I will never forget Rabbi Davidson asking me — are we doing this without Matthew? I said “yes,” as I couldn’t stop the service. Then as our immediate family and grandmothers were ready to pass the Torah from one generation to another, something extraordinary happened. Matthew walked right in and walked up on the bimah. He wanted to be there to support his brother. As we looked in complete shock and awe, Matthew helped pass the Torah. When afterwards I went to praise Matthew, he told me he was upset that we didn’t let go as he wanted to see how heavy it was. While I laughed at the thought of him holding the Torah and dropping it, I later learned from Missy that Matthew said, “I can’t miss the passing of the scroll,” to which she told him he had to regroup. And regroup he did.
While the mitzvah project was a beautiful gesture and Matthew’s support was enough for the day, it was Miles’s sermon that reinforced that this experience was for all of us and Temple Emanu-El is a community for all. Miles tied his life to his Torah Portion. Below is an abridged version of Miles’s sermon:
“God often chooses to set people apart so obviously. Some people are born with all kinds of differences. Just like the priests wear their clothing to show that they are different, children with special needs wear their own, metaphorical coat. But, unlike the priests, they can not take it on and off. For example, my brother Matthew has autism. To a stranger, his metaphorical coat is obvious. To me, he’s my brother, doing the best he can with all of his challenges, and everyday, like me, learning new things.
When I went with Temple Emanu-El to the Special Olympics, I realized, when interacting with other people like Matthew, I wanted them to win. I wanted them to succeed. When I gave a medal to someone, they said to me, and I will always remember this: “I don’t bite.” Now, the first thing anyone would say, is “I know.” But for me, someone who has had to deal with ADHD my whole life, an amazing brother with autism, and a family who isn’t always perfect, I really understood where these people were coming from — each of them, like each of us, have their own special appearance, or clothing, just like God commanded for the priests. I knew their special God-given clothing sometimes causes them hardships. I knew how long they have had to deal with this.
You all know the saying, ‘Never judge a book by it’s cover.’ A saying that your English teacher would say to you when you didn’t want to read a book. I’m not going to tell you this. I’m going to tell you to never only judge a book by its cover. Pay attention to it, it can tell you a lot about the book, but not enough to judge it. What we can learn from this, is that everyone is special in more than one way, and you can’t always tell just by how they look. We are each working with what God has given us. I am a nice kid, but when you get on my bad side, or I’m having a bad day, I may not be at my best. And Matthew is here with his teacher, experiencing this day, the best way he can. Supporting me, celebrating his brother, and probably, if I had to guess, where he feels most comfortable: The last row.
No matter where you are, in the back, in the front, in the middle, I appreciate all of you. You might not even hear me well if you’re in the back, but at least you’re comfortable in your own, metaphorical coat. And that’s perfectly fine with me. Shabbat Shalom.”
At the end of Miles’ sermon, the audience clapped and, yes, raised a few more dollars for MCC. But Evan and I just sat there. Our thirteen-year-old son commanded the same room as former Presidents, Supreme Court Justices, and First Ladies and taught us all that everyone is doing the best they can. I also reflected on our time at Emanu-El. It wasn’t just about Miles; it was also about Matthew and how he is part of this vast community – with no judgments.
At the end of the evening, Evan asked Miles what he most enjoyed about the day. He mentioned the party, Matthew being on the bimah, and then he said, “I really enjoyed talking to Rabbi Davidson when we were at the ark. Miles then said, “Matthew’s next, Mom.” I never thought about Matthew having a bar mitzvah until that day; now I know it will happen in some capacity as he needs to know how heavy the Torah really is.
Over the last few years, in my role as Chair of the Parents Association, I often speak about Matthew and what we as a family can and can’t do. I am fortunate to know what the religious school works to teach to every learner at their level and has helped to create their first social story for other families. However, on this day I realized that Miles’s bar mitzvah was special because it wasn’t only about Miles; it shows his understanding of what it meant to be a Jewish person through his love for Matthew. In a world that is dominated by smartphones and screens, it brought me great joy to know that Evan and I had made the right choice. We brought our sons into to a community where everyone can feel welcome.