We all need the magic words of inclusion

We all need the magic words of inclusion

The author, Heidi Rome, with her husband Steven, and two sons, Ethan and Eric.
The author, Heidi Rome, with her husband Steven, and two sons, Ethan and Eric.

Why am I crying?

My younger son Ethan, now 10 years old, has autism, and has certainly pushed the envelope of accepted standards of public behavior both during and after services. He is mostly non-verbal and has a short attention span. He often shouts or otherwise vocalizes during the service. He is especially intrigued by the ark and has often darted onto the bima to get a closer look at and touch the Torahs. 

Above all, Ethan looks forward all month to the oneg afterward, and particularly to the pizza bagels. 

Could I be crying about Ethan’s love of pizza bagels, or that they are his favorite part of the evening? The reminder that eating is one of his only pleasures, his autism having taken from him any interest in toys, or games, or stories? Am I tearful because he now associates a special place with a special food? I don’t think so; in fact, it makes me smile.

For me, there are so many parts of the Shabbat L’Khulam experience that touch my heart, but the point in the service when I am almost guaranteed to cry, each and every time, is during the singing of Debbie Friedman’s song, “Mishebeirach,” the prayer for the sick:

May the source of strength,
Who blessed the ones before us,
Help us find the courage to make our lives a blessing,
and let us say, Amen.
Bless those in need of healing with r’fuah shleimah,
The renewal of body, the renewal of spirit,
And let us say, Amen.*

Why am I so moved by this? Of course, in part it is due to my yearning that Ethan be miraculously healed of his autism; that he suddenly be granted the gift of fluent comprehension and expression, with the confounding fog of disability lifted from him. I imagine the removal of worry and fear for his future and my vast relief that must follow. I dream of his future friendships, relationships, wife and children, livelihood, all the blessings of healthy body, mind, and spirit. I envision my own healing from the grief, regret, disappointment, despair, anger, panic, sense of helplessness, and fear of not being strong enough for the challenge.

The tears that spring from my soul at the first chord of “Mishebeirach” actually signal my deep recognition that Ethan’s autism has been a shortcut, a wormhole to the galaxy of purpose and blessing in my life that otherwise would have taken light years to reach. His courage and perseverance in the face of frustration and challenge make me very proud of him. And when we can laugh and let go of heavy apprehension, he can relax, progress, and emerge even more from the shadows. It is also true that, while I would not have chosen this difficult path, it is indeed because of it that I have met some of the most wonderful human beings along this journey whom I would not have encountered otherwise. 

I admit I feel some embarrassment at the public tears, and want to hide and stifle them. And yet, they come because I am surrounded by an accepting community where it is safe to express the deep emotions overflowing from a heart that often feels overwhelmed. So, feeling foolish, and not foolish, I usually let them spill.

I’ve had to learn this trust. The earliest visits to Shabbat L’Khulam, when it began a few years ago, were hard for our family. Will we really be accepted there? What if Ethan does something really terrible? Well, he did fling an instrument. He did scream. He did run around the room. He did have a pee accident.

The response? “Tell me how I can help.” “Tell me what you need.” 

Any parent of a special needs kid — or any kid — will tell you that those are the magic words you need to hear when your child and you are having a hard time. They are the words of empathy, compassion, and caring, not angry judgment. They are the words that bring people together, not drive them apart. They are the loving words, beliefs, and actions that release fear and build trust.

Just as the congregants attending Shabbat L’Khulam accept whoever is there and whatever occurs, I am learning to accept what is and what is not.

What would I love to see in the future? To clone this special warmth and atmosphere of acceptance into every single program and service, so we can address all those unspoken fears, unexpressed concerns, unshed tears. We already have the loving people with open hearts who are eager to assist — we have only to instruct them and provide them the best tools our resources allow. 

For example, let’s organize a corps of special volunteers to staff every gathering to provide extra support to those who need it — fetching coats or food for the elderly, getting crayons or toys for young families juggling little kids and babies, providing large print books and listening devices, leaving buckets of “fidget” therapy toys in every aisle for those who need them to calm down. You get the picture. 

For our kids with autism, a sensory room, a quiet room, and noise-cancelling headphones. For kids like Ethan who are getting bigger and still have significant behavior issues, post-bar mitzva helpers willing to engage with special kids who can’t be left alone with typical baby sitters, and can help them participate in the activity at hand. 

Shabbat L’Khulam embodies hesed: loving kindness and acceptance for every aspect and every individual of the Jewish people. As I write these words, the tears speak to me again, lodging in my throat as I express my gratitude. Creating music and the highest vibrations in the physical and spiritual realms, this special service and all that it represents continues to generate abundant hope and joy for all touched by its radiant beauty. 

* Copyright 1988 Deborah Lynn Friedman and Drorah Setel (ASCAP), Sounds Write Productions, Inc. (ASCAP). Used with the permission of Sounds Write Productions, Inc.

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