Benji, Autism and an Epic Milestone

The doctor’s expression told me everything I needed to know about my three-year-old son. Her words confirmed that speaking, learning, and socializing were likely to be difficult or impossible due to the diagnosis that was still echoing in my brain: Autism Spectrum Disorder. "Take him home and love him,” she said.

Of course I would love him; I just had no intention of stopping there.

Ten years later, we stand together as mom and child overlooking an audience of 250 family members and friends. This is a day like no other and one that we only dreamed could be possible. Today is Benji’s Bar Mitzvah.

It hasn’t been the easiest 10 years to get to this milestone,  but it has been a growth experience for all of us.

In the beginning, I wasn’t even sure what I was looking for. A therapy? A cure? A treatment that would alleviate the “symptoms”? I realized I was seeking something, anything that would help Benji. I researched every potential avenue - medical or alternative.  In my desperation to find what would help him, we traveled to the ends of the earth to meet with different practitioners.  I was eager to try everything - it all gave me hope.  My husband, a medical doctor, wanted to pause and evaluate.  He wanted studies, clinical trials and evidence to the efficacy of all possible therapies. We met in the middle and our mantra became if it wasn’t going to harm him, we would give it a try.  The first real hope was meeting with a practitioner who was on the Autism spectrum herself.  She gave us practical solutions to begin helping Benji.  Prior to working with her, Benji spoke only in limited canned phrases.  After working with her once and doing minimal follow up at home, Benji asked a real question. This was a major breakthrough! She was the first specialist that proved taking him home and loving him was not the fate that Benji was determined to have.

Many miles, loads of money, and tons of time were all spent on finding treatments.  Some helped a little and a few were life changing.  Fast forward 8 years, Benji is thriving in a mainstream school, academically, socially, and spiritually; and is considered a gem in this community.  He has many fans from all over the world.  

When thinking about how we should plan for Benji’s Bar Mitzvah celebration, I had a conversation with him on how I saw the day.  I made the suggestion (a low key bowling party) and his response was, “I have climbed some seriously big mountains, don't you think I deserve a traditional Bar Mitzvah?”  So, we planned a traditional Bar Mitzvah, and nearly every single person who was invited came from near and far to share in the celebration.

In front of a packed sanctuary, Benji didn’t just shine, he captivated a room full of his family, friends and key players in his journey with Autism.  Everyone in that room has played a role in Benji’s journey and we all knew this day would be especially meaningful. Meaningful is an understatement - it was magical.  Not only did he nail every part of the service,  he gave a heartfelt, and a relevant speech about letting go of anger.   It became clear that his Autism was not stopping him from taking in this magical day.  In fact, it lifted him to move a room of 250 people to a standing ovation.  This was a first for our Rabbi of 20 years.  Every person in the audience was overwhelmed by the joy that Benji exuded. It was a day beyond anything I ever imagined possible. It was…..the best day of my life.

This is not your typical proud mom bragging about their child, this is about being an advocate so that my child could experience the world in the same manner in which his peers did.  Benji’s Bar Mitzvah was a defining moment in our family’s lives.  There are so many reasons why anyone who struggles with a special needs child should always have hope.  

I didn’t know whether Benji would speak.  He lead an entire service alone in front of 250 people.

I didn’t know if he would be able to learn.  Benji is a musical virtuoso. He is also a walking GPS who knows every major roadway in the US.

I often wondered if my child would develop interests and passions.  Cars, boats, airplanes, real estate, fashion, and politics are just a few of the things that he finds fascinating.

It seemed unlikely that Benji would develop relationships with others.  Family, Friends, teachers, neighbors only know Benji as being compassionate, empathetic and caring.

So maybe if you are told that your child will never be able to speak, learn or socialize, think of Benji and have hope.   Against some pretty steep odds, Benji stood on the bima and said, “Thank you for always being by my side and guiding me through life. I could not ask for better parents. You are the few parents that did not accept what experts said, refused to give up, and always tried extremely hard to help me be the best Benji I can be.” This was the first time we heard this part of his speech and it felt like my heart was going to explode out of my chest with pride.

In the beginning, I expected to be the teacher, after all, that's what I did before there was Benji. Little did I know that he would teach me far more than I could ever teach him. Raising him has taught me to be less afraid of the world, to always believe even if I had to alter my perspective and mostly importantly, has made me want to be a better person.

Our quest to help Benji taught me to never lose hope; and to see that miracles in fact are possible.