#blogexodus for 10 Nisan: Why I’m Blue Despite the Greenery

The subject chosen for today’s #blogexodus is “Greenery” as in the Karpas that adorns our seder tables. But I have a different color in mind on this 2nd day of April. Today is Worldwide Autism Awareness Day and “Blue” is its color. In support of the 1 in 88 of our children who have been or will be diagnosed as being on the Autism spectrum, many of us are wearing blue today and buildings all over the world will be lit up in blue this evening.

I am wearing blue in support of the children and parents whose lives have touched me as I have supported them in their unique challenges. On this day, I have one very special young woman in mind. Many years ago, in a previous congregation, Rachel and her parents came to meet me after having moved east. They came to our area because of a residential school that was perfectly suited to help Rachel learn and to ultimately become an independent adult. Rachel’s amazing parents couldn’t imagine living farther than driving distance from their daughter, so they transferred jobs and moved many hundreds of miles to be able to have her home for weekends.

When they came to the Temple it was just to join, they mentioned nothing about Religious School or a Jewish education for their daughter. I learned that she was 11, and I asked how we could work with them and her school to give her a Jewish education and prepare her for her Bat Mitzvah. The surprised look that I got in response spoke volumes.
With Rachel’s challenges a Bat Mitzvah hadn’t even been a question, much less a consideration.

After explaining that we would craft a program, experience and service to Rachel’s unique abilities and challenges, we put into motion events that led to marvelous conclusion. In short, one of my best teachers went for special training in teaching autistic students and then worked with me and her parents to create a learning plan. Every week, Rachel’s mom drove many miles in both directions to bring her for her lessons, in the process crafting a special bond between Rachel and her tutor, and myself as well.

To make a long story short, all this led to one of the most beautiful Bat Mitzvah Services at which I have ever had the privilege of officiating. Like any other child in the congregation, she read most of the prayers, four aliyot and a portion of the haftarah. Rachel’s greatest challenge was her discomfort with social or physical contact and interaction, so we made the atmosphere as comfortable as possible. It was a small semi-private service with a managed number of family and friends and the lectern on the floor with seats arranged in a warmly embracing semi-circle. When she wasn’t reading, Rachel sat in the front row with mom on one side of her and her tutor on the other.

One of Rachel’s challenges was that of making eye contact. She didn’t make eye contact with anyone as she led us in worship. But at the end of the service, as I offered the last words of the priestly benediction over her and her parents in front of the open ark, she looked up at me ever so quickly with the slightest of smiles and then turned away. In that briefest of moments she gave me the second best gift she ever gave me.

The best gift came four years later during my last service at that Synagogue. When Rachel’s mom told her that I was going to be leaving, she asked to come to services to say goodbye. At the end of the service we had a receiving line so people could have a chance to say goodbye more personally. When Rachel reached me, she looked up from the floor, gave me quick glance and then followed it with a big hug before letting go and returning her gaze downward. Her mom and I were both in tears. That hug meant more than all the other words of thanks or gratitude I received that evening. And so today I am wearing blue for Rachel and her parents and for all the parents and children who battle the same challenges and share the same gifts as they do.

One last reflection. When Rachel was little she often had uncontrollable meltdowns that required gentle physical restraint to keep her from hurting herself or others. During such episodes, it was not uncommon for her mom to receive cold stares, reprimands and worse from onlookers who lacked understanding. Rather than becoming embittered, she printed up cards that she could hand to people. In essence they explained autism, her daughter’s social challenges and how they could help. Sometimes this simply shamed people, but most of the time it brought understanding, concern and help. From Rachel’s mom I learned how exhausting and taxing it can be to parent an autistic child and how much a little care, concern and support can mean. Consider wearing blue today or lighting a blue light tonight to show your support.

But, more importantly, when you see that parent struggling to help their child who is melting down in the middle of an airport terminal, instead of looking away with a grimace, consider reaching out in support. Offer to help with her bags so she can focus on her child; sometimes it is the simplest of gifts that can be the most precious.

This entry was posted in #blogexodus, Nisan, Passover and tagged . Bookmark the permalink.

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