Once a month, a group of about 20 Jewish women meet to talk about their children. That may sound fairly routine, but this gathering has a unique purpose. All of these women have children or grandchildren with special needs. They meet to share information and to support each other.
The ages of the children range from 2 ½ to 50 and their special needs vary just as widely, including autism spectrum disorder, adult mental disability, physical disability, severe allergies, sensory integration disorder, learning disability and cognitive issues. However, these mothers and grandmothers share many common concerns and experiences. “What is remarkable is that it really doesn’t matter what the special need or disability is, the feelings around it are very similar,” says Joyce Stuehringer, who started the group in February 2013.
Those feelings may include shame, anxiety, worry, anger and exhaustion, but also joy. “Every mom is stressed out sometimes,” says Stuehringer, the mother of an adult son who was born with a disability. “Put that on steroids when your child has special needs.”
“There are certain themes that run through: limitations in life, obstacles, being an advocate for your child. Those things are similar regardless of the disability,” says a woman we’ll call Anne, who asked us not to use her real name, to guard her son’s privacy.
Facilitated by therapist Carol Hollander, who volunteers her time, each meeting starts with a short meditation, followed by the opportunity to raise any issues of immediate concern. The rest of the meeting focuses on a specific topic, chosen the previous month. Hollander brings structure to the discussion and confidentiality is strictly observed. Everyone has the chance to express themselves and request feedback, if they choose.
“There’s a tremendous feeling of isolation when you have a special needs child,” Stuehringer says. “As Jews, we value intelligence, performance and achievement. Our egos are very tied up with how our children perform. It’s a learning experience to separate yourself from that. Acceptance is critical and it’s a very, very long process. The group really nurtures that and allows for expression of those frustrations and concerns in a non-judgmental atmosphere. You know you’re being heard and understood.”
“There’s a level of acceptance, compassion and understanding,” says Anne, who is the mother of a 14-year-old with an autism spectrum disorder. “I’m a big believer in parallel experiences. When you have a baby for the first time you seek out new moms. Any time you have people in a similar situation you gain strength from that. I learn from other people’s stories.”
Those include the stories of Nancy Finkelstein, the mother of a very happy 25-year-old son who was born with several developmental and motor disabilities. “I wish it had been in place when my son was younger. It would have made finding the way through things easier,” Finkelstein says. “It’s really hard if you don’t feel like you have people you can turn to for questions and support.”
To make things easier for parents who are just starting out, or looking for additional resources, the group is developing a resource list that will eventually be available for the community. “Why reinvent the wheel?” Stuehringer asks. Referrals include psychiatrists, therapists, even dentists and barbers who accommodate people with special needs.
The Jewish Special Needs Moms group meets on the third Thursday of each month, from 6:45-8:15 p.m., in the Tucson Jewish Community Library, on the second floor of the Tucson Jewish Community Center. For more information and to RSVP, contact Stuehringer at 299-5920 or [email protected].
Nancy Ben-Asher Ozeri is a freelance writer and editor in Tucson. She can be reached at [email protected].