Rachel Schneider was 27 when she was diagnosed with sensory processing disorder back in 2010. And suddenly her life made sense.
“It explained my entire childhood,” Ms. Schneider said.
“I was always a very sensitive kid. Things made me cry that shouldn’t have. I was bothered by things other people wouldn’t notice. I lived a very uncomfortable life.”
Since the diagnosis, she has blogged about sensory processing disorder; written a book for adults and a book for children; and now worked with Rabbi Paul Jacobson to design a sensory-friendly Shabbat service for Temple Avodat Shalom in River Edge. (See box.) Rabbi Jacobson had reached out to her after reading her book for adults, “Making Sense: A Guide to Sensory Issues.” “Our goal is to create a comfortable worship experience for adults and children who face sensory processing concerns,” she said.
Ms. Schneider compares her sensory processing issues to a computer with too many windows open: “It will crash.”
When her senses overload, “My eyes can see but I’ll see every little line. I’ll see very tiny pieces of the pattern, but I have trouble seeing the whole. I’ll see you, but my brain will be almost fighting to make sense of every tiny detail.
“If we’re overloaded with sensory information, we can have a meltdown or a shutdown. It’s a very intense tearful event where you kind of lose connection to what’s around you and just break down and cry.”
People with autism often have sensory processing disorder — but there also are people like Ms. Schneider, who have sensory processing disorder but do not have autism.
“Last night, I was cutting salmon for dinner,” she said. “In the middle of cutting, I felt as if my hand was not connected to my body. My eyes could not make sense of my actions. My brain couldn’t process it comfortably. I had to physically walk away and take a break.”
Since childhood, her history with Shabbat services is “kind of mixed. I find them too loud. There’s a lot of movement. That’s a lot of sensory changes that happen.”
So she’s very excited about helping to design a synagogue service for people like her. “Our goal is to create a comfortable worship experience for adults and children who face sensory processing issues,” she said.
She has been working with Rabbi Jacobson and Barbara Haber, Avodat Shalom’s educational director.
The first difference that regular worshippers will notice is that the service is not in its usual place. “They walked me through the temple on Skype,” she said. “We picked a room that’s normally a classroom, that has a lot of natural lighting.
“It’s in a smaller room, as opposed to a very loud echoing room,” she said. “I like that the room is carpeted. Carpet absorbs sound. It’s easier to connect to the ground.”
The room’s chairs will be set at tables. “I don’t like sitting in a loose chair. It can feel very disorienting,” she said.
“We went through the different senses and thought out, how can we do it so someone who is particularly sensitive to input can feel part of a service.”
Visually, “it needs to be a more simple space, rather than the more complex sanctuary. We are going to be mindful of sounds. It’s going to have a guitar rather than anything louder. There will be no microphones. No cantor. I love cantors but sometimes it’s hard to process the strong voice that comes out of them.”
There will be ear plugs available. And there will be a separate room set aside as a quiet space if the service gets too overwhelming for anyone.
Even the kiddush is being planned for people with sensory processing disorder; organizers are paying attention to the texture of the food they will serve.
“There are people in every congregation who have sensory sensitivities,” Ms. Schneider said. “I want to go to temple more regularly. I like services but they can be hard for me.”
Ms. Schneider grew up in Manhattan’s Brotherhood Synagogue and now lives in Riverdale, N.Y. “Museums are starting to do things like this,” she said. “It would be really wonderful if other synagogues and congregations want to try this out.
What should people do if they think they might have a sensory processing disorder?
“The best option is to see an occupational therapist,” Ms. Schneider said. “It can be challenging to find somebody to evaluate you as an adult” — the condition was first and still is most commonly identified in children.
“Take a week and look at your eight senses,” she advises. Yes, eight — the familiar five senses of sight, sound, smell, taste, and touch, but also the vestibular system, which contributes to balance; proprioception, which detects where your body is in space; and interoception, which detects internal body states like hunger and thirst.
Ms. Schneider said her proprioception sense can be overwhelmed, leading her to bump into furniture. “Notice when you feel like you’re about to have a shutdown,” she said. “What’s happening at that time? Notice what’s your pattern.”
She said that the STAR Institute for Sensory Processing Disorder is the central clearing house for the condition.
“Many doctors still see this as something only children have,” she said. “Some doctors see this as made up. It’s certainly not made up. I can tell you from experience.”
Occupational therapy is the best approach for treatment, she said. There are a little things that she does that makes a difference.
“We like to fidget. People with SPD like to play with a pen or squeezy stress balls,” she said.
Weighted blankets made a difference for her, helping anchor her sense of proprioception. “I did not sleep well for most of my life,” she said. “One day someone asked if I had tried a weighted blanket. Now I sleep under a 17-pound weighted blanket and I sleep wonderfully.
“The goal is to live with this. If you have visual sensitivities, you can put on tinted glasses. I was prescribed blue tinted glasses.
“People think you go to occupational therapy and it gets fixed. We’re not broken, and there’s no fixing. We live with it.”