Mitzvah Planning for the Special Needs Family: Part 2

It’s taken me a full week to recover.

Physically exhausting, mentally exhausting, emotionally exhausting, and I wouldn’t change a thing. 

It was a perfect mitzvah!

My son, who is nonverbal, uses a wheelchair, communicates through devices with labor-intensive responses due to poor fine motor skills and hand-eye coordination, and has seizures that interrupt his moments and make him sleep…he did it! And he rocked it! He became a Bar Mitzvah!

All of those worries I had, all of the fears and angst and scenarios…valid, yes, but moot. He rallied. We all rallied. It really truly happened!

I’m still recovering, and I’m still processing.

I really had no idea that this milestone would even be possible.

How on Earth would he be able to do become a Bar Mitzvah? Would he be a willing participant? Would he even be aware of what was happening? 

We are an interfaith family. We do not belong to a synagogue. My family is out of state. A Bar Mitzvah seemed like a pipe dream 14 years ago. Actually, it wasn’t even that. Every new day still alive was a miracle. The last thing on my mind was a Bar Mitzvah. He was two years old before we could celebrate his bris and officially welcome him into Judaism. But we did it then, and I felt pride. Pride in him for making it that far. Pride in him for his fight, his determination, his sense of humor, his subtle signs that he’s paying attention, and he gets it.

Soon after, I realized we had no plan for a Jewish education for him. A typical temple preschool clearly would not be able to meet his needs. So I archived it. 

And then I found out about Gateways. 

All I really hoped for was some exposure to Judaism for Harrison, more than he would get at home. Well, he did get that, and so much more. We went in to visit and meet the staff. They requested a copy of his IEP (he was 7 by this point). His what?? Yes! Special educators, speech pathologists, and a myriad of Jewish teens who love working with disabled kids as one-on-one volunteers. Did we just hit the jackpot? I think so!

Harrison learned all about Judaism. He learned that he loves singing Hebrew prayers, and he loves learning about Jewish holidays and customs. He appreciates the idea of tzedakah (charity) and tikkun olam (repairing the world). Who knew he was so kind?

As he got older, he moved into a Bar Mitzvah class. He learned about the privilege and duty of wearing a tallit (prayer shawl), the importance of doing mitzvot (good deeds), and what it means to become a Bar Mitzvah, to become a man, according to Jewish tradition.

Can this really happen?

I still did not know what to expect, or how the day would look.

And then his teacher Rebecca allayed my fears. 

We don’t belong to a congregation. That’s ok, we can celebrate at your home!

We don’t have a Rabbi. That’s ok, his volunteer Jenna just happens to be a Rabbinical student, and their bond is undeniable.

What about the service? That’s ok, Rebecca and Jenna will create a plan, and together we will individualize it, and make it perfect, for Harrison.

So I dutifully brought him to Bar Mitzvah practice every Wednesday after school. And he shined there. We decided on a Havdalah service, in the late afternoon, marking the end of Shabbat, because everyone knows he is NOT a morning person!

He painted a wooden kiddush cup, he decorated a spice box and chose cinnamon to go inside, and he made a Havdalah candle, all symbols of the relaxed and sensory-filled service we chose. He practiced his prayers, and he practiced holding the Torah close and parading it around for all to see and kiss and pay respects. He sang songs. He was ready.

Finally, the big day arrived. Harrison did not fall asleep until close to midnight the night before- excited, maybe? Friends and family began arriving and greeting him with smiles and hugs and enthusiasm. The balloons were being set up. Family and neighbors set up chairs and tables under the huge tent. Rebecca and Jenna arrived, and he broke out into a smile that never left his face, and giggles that lasted for an hour. He knew it was his day, and he was happy.

Harrison was alert. He was attentive. He participated. He stood tall in his stander and faced his people, all of whom looked back at him with love, support, and pride. He fulfilled his role beautifully. He paid attention to the rest of us when we took our turns in the service. He recited, using his ipad, his Torah portion and his D’var Torah, teaching us about the importance of doing mitzvot and the meaning of wearing his great- grandfather’s tallit, which was blessed and draped around his shoulders by his grandfather. He was surrounded by his family- his brother and sister, his grandparents, his godmother, his parents, and his friends. Everyone yelled “Mazal Tov” and rang bells in celebration! He was buckled into a Special Tomato chair and was lifted high into the air by his dad and friends while we sang and danced to Hava Nagilah! We all rejoiced. We all celebrated. There wasn’t a dry eye in the house. Harrison had become a man! And he knew it!

And the next day, he rested!

Anything is possible.

I am telling you, it can happen. Together, you and your people and your child can make it happen, in whatever way is perfect for your child.

I have always felt like an outsider, an onlooker, to my friends who beam with pride about the accomplishments of their children. Harrison’s accomplishments might seem to be on a smaller scale, but they are just as impressive. He works just as hard, and he has made substantial progress in the most fundamental parts of being alive. And yes, we are proud of him every day. But this day was different, for me, and I think for him too. This was his show. He nailed it.

If you have a child who is disabled, maybe you’ll appreciate my next words: it was the first time I felt 100% like a proud mom, and not at all like a caregiver. And I still feel it. I’m still reeling and floating and beaming with pride I have never before experienced. And funnily enough, feeling like a caregiver no longer takes away from feeling like a mom.