When my son Ian was born in 2009, his bar mitzvah felt like lightyears away. And yet, when I sent a birth announcement to the Crystal Plaza where I got married a year prior, I had already started to envision proudly standing beside him as he read the Torah in that same room. I had dreams, and admittedly, expectations, that we would celebrate our beautiful boy in this same location where my parents wed years earlier. It meant so much to me that I even jokingly sent the Crystal Plaza a note requesting that they lock in the same rate for his bar mitzvah in 13 years (as if anything in life would work out that easily).
As a first-time mom, I was blissfully unaware of how atypical my child’s life would be. Ian was a late developer; he didn’t walk until he was 18 months old, around the same age he lost his language and regressed developmentally. Close to his second birthday, he was diagnosed with Autism Spectrum Disorder. When our younger daughter Greenlee was born with a chromosomal duplication, another wrench was thrown into my carefully planned life and forced me to start wondering how much can actually be planned ahead.
I’m a planner. I’ve always been a planner. To say that autism was not a part of my carefully laid plans would be an understatement. I cringe thinking of how I tortured Ian by taking him on highly competitive preschool interviews. While other parents were discussing where they signed their children up for Mandarin, we were merely hoping to hear Ian speak again.
Through years of endless therapies, interventions and a specialized school, Ian has grown from a shy, timid kindergarten student with minimal language, who would elope out of the building because he wasn’t able to express himself, to a friendly, hardworking and, quite frankly, chatty young man.
But getting Ian to where he is today has not been easy. When you are raising a child with disabilities, reaching milestones is not always a given and certainly not as straightforward a path. Ian has taken his own time in hitting his development milestones, but one milestone we felt strongly about was for him to have his bar mitzvah.
We were concerned that a lengthy service would be difficult for Ian to sit through as he is a visual learner and has a short attention span. Also, while it is easy for him to memorize, he would not be able to comprehend the meaning of the prayers.
But through the help and dedication of Rabbi Schlomo Gutnick from the Friendship Circle, an organization dedicated to bringing happiness and companionship to Jewish children, teens and young adults with special needs, Ian had weekly one-on-one lessons for two years and was able to rise to the occasion and accomplish this monumental Jewish coming of age.
It was quite clear that Ian’s bar mitzvah would not mirror the other bar mitzvahs we have attended. And since Ian doesn’t like crowds and loud music, The Crystal Plaza would have to wait.
I poured my heart and soul into all the party planning details, determined to make it a one-of-a-kind, unique celebration specifically for Ian. In the end, the bar mitzvah was magical and surpassed my high expectations. I was in awe as I watched from my seat as Ian handled himself on the bima and read from the Torah.
Here’s some tips I would recommend to any family preparing a bar/bat mitzvah for a child with special needs. Think of it as “MAZEL”:
Make it all about your child
Many children on the spectrum are obsessed with a particular topic. Since our son is highly knowledgeable about buses, we turned his passion into a fun theme: #Iansbusmitzvah. The digital invitations were on the front of a bus. His logo was his first name as the MTA logo. We named the tables after bus numbers and a favorite destination he travels to. We arranged for a bus to take everyone from the Chabad to a local restaurant that was easily within walking distance. A friend even got a group of Long Island bus drivers to make a video congratulating him. Don’t try to hide your child’s passions; this is the time to let them shine and let your guests appreciate these special interests with your child.
Acknowledge and appreciate that your child is different
We celebrate Ian for exactly the amazing young man that he is. Just as we would never force him to be anyone but himself, we didn’t try to force the bar mitzvah to fit the mold of all the others we’ve attended. We wanted to be true to Ian’s interests, personality and talents. Rather than Ian reading the Torah passage that is traditionally read, Ian read the Hebrew alphabet. This modification allowed Ian to proudly demonstrate the hard work he did with Rabbi Schlomie.
Zebras, clowns and live entertainment are completely unnecessary
Many families experience the unspoken pressure to do more and keep up with their contemporaries. My advice to you: Release yourself from that burden and just focus on what’s most important. While Ian enjoys music and dancing, he can become overstimulated and uncomfortable in large crowds and noisy environments. Keeping this in mind, we selected a restaurant that could accommodate 50 guests and serve a delicious three-course dinner. Given this venue, and Ian’s particular needs, it was unnecessary to hire a DJ, band or have live entertainment. His only request was to be carried up in a chair to the music of the hora. This was important to Ian, and when the restaurant was able to accommodate our special request, we knew it was the right fit. The look on Ian’s face as he was carried around the room is a memory I will cherish for a lifetime.
Embrace your child for reaching this incredible milestone and doing their best to get there
If it were up to Ian, he would have preferred to stay home and watch YouTube bus videos. We are extremely proud of Ian for pushing himself to leave his comfort zone and standing before a large crowd of people reading Hebrew. While a three-course meal in a nice restaurant may sound like a treat to us, for Ian, it can be a difficult experience. The crowd, the volume, the spotlight and the social interactions are all factors that can be difficult for him to navigate. And yet, he persevered throughout it all. Ian was not the least bit nervous and fully basked in the attention. He grinned from ear to ear, especially when the congregation pelted him with candy.
Less is more
This one can apply to every aspect of the planning process. From the guest list to all the bells and whistles, I recommend keeping it simple. There were many wonderful relatives, friends and acquaintances I would have loved to celebrate this occasion with. However, in order to make this event the most comfortable for Ian, we were forced to cut the guest list substantially. While you may feel uncomfortable doing this and risk hard feelings, be confident that you are doing what is best for your child. After all, that’s what this event is all about. We ended up with a core group of family, close friends and longtime neighbors. Ian had a level of comfort with all of the attendees, which was a game changer for his anxiety. And since everyone at the party knew Ian so well, they were all able to share in our joy and pride, knowing what an accomplishment this truly was.
Also, and probably most importantly, don’t forget to laugh! Eat, drink and mingle with your guests who are here to celebrate with you and your family. Have a great time! After spending a good deal of time and money, you pulled it off!
Ultimately, the bar mitzvah was not the over-the-top extravagance I had once envisioned. It was actually much better than I hoped. It has been an incredible honor to watch my son transform and blossom before me, and to celebrate the many highs with him. I can’t emphasize what a major accomplishment it has been for Ian to learn Hebrew and become a bar mitzvah, and I wouldn’t change anything about it.