This summer, I described my son, who is thirteen, as splitting his time between Billie Eilish and the L.A. Dodgers—a typical L.A., young teen existence. If you’re in the same boat, you can probably relate—except that my son, Noah, was born with a genetic condition that comes with a cascade of medical, educational and social complications.

When Noah was born, there was so much we didn’t know. There’s no road map for most of us when we learn about a child’s disability for the first time, whether it’s something that’s commonly understood, or something rare and complicated like Noah’s, which presents a lot like cerebral palsy.

Since our journey with Noah began, we’ve experienced a lot of the frustrations common to parents of young children with disabilities, along with many moments of joy. We’ve met other families and learned that we share common experiences—the fractured nature of support and resources, and the frustrating dead-ends and U-turns that come with trying to access those resources, services, reimbursement, and yes, fun, too.

Staying grounded, reaching out to the community to find other families like yours, and paying it forward when you do are all good guidance, but sometimes it’s really hard to follow that advice when you most need it. The cycles of grief that can accompany parenting a child with a disability are completely normal and necessary—that’s one of the most important things I’ve learned in my journey as a parent, and I owe most of that to Diane Simon Smith, a mother of two boys with disabilities who has practiced marriage and family therapy for more than twenty-three years.

Diane’s guidance on going through the grieving process has had a big impact on me in this season of life as Noah’s dad. As Diane told me and a group of other parents recently, it’s necessary to sit with the emotion that comes with grief. Then, when we’re ready, try to picture a landscape that incorporates that emotion and start building a new future, one brick at a time.

Noah is now at the age when it’s time to start preparing for his Bar Mitzvah celebration. Thinking about how different it will be for him and our family has triggered a whole new cycle of grief for me, and served as yet another reminder that so many things aren’t typical for Noah. He won’t have the kind of ceremony that his mother and uncle did when they turned thirteen. Sadness overwhelms me every time I think about that. So I do my best to sit with the emotion. Then, taking Diane’s advice, I think about all that’s possible in building a Bar Mitzvah with Noah that’s not typical. And with that first brick, I see a future that fills me with joy.

As we engage with the Rabbi, Noah, and his family to prepare for Noah’s big day, we’ve all been reminded of the core purpose of this ceremony. The essential idea is to establish that Noah is ready to be a part of the community, and the community is ready to receive him as a fully-fledged member. Typically, the person does intensive studying in preparation to perform a Torah reading during the service. But we are taking a not-so-typical approach so that Noah can bring his whole self to the service through his strengths and loves. As with everything in Noah’s life, music will be everywhere. We are still working on which Billie Eilish song is most appropriate based on his portion of the Torah, but he will be rocking his eye-gaze device to let us know. And in doing so, he is opening the eyes of his family, his Rabbi, and the broader congregation to a new way of seeing this rite of passage. One that doesn’t feel rote, and reinvigorates a sense of a person’s responsibility to his community and the community to him.

Learning from experts, other families that share our experiences, and our children helps us as parents to not only cope, but heal and thrive. That’s one of the biggest motivators for me when it comes to supporting other families raising kids with disabilities—the idea that we can accomplish so much more when we work together.

Jason Lehmbeck

When Jason Lehmbeck's son, Noah, was born with a genetic condition, he pivot his serial technology entrepreneur experience into his new mission: Undivided, a technology platform to help parents of kids with disabilities live their best lives.

Jews are known to have a joke for any occasion. And many of those jokes deal with the fact that, when it comes to the so-called High Holidays, Rosh HaShana (September 16, 2012) and Yom Kippur (September 25, 2012), tickets to services are expensive and, if you’re not already a synagogue member, very difficult to get. Not to mention, the services tend to be long, and not particularly child-friendly. Really how much atoning does the average pre-schooler have to do?

This year, though, the joke is on them, as Red Tricycle reveals a list of NYC places that offer meaningful services just right for kids – and at no cost, to boot!

Chabad
Various NYC locations
This ultra-Orthodox international organization makes no secret of the fact that their goal is to make secular Jews more observant. And, by more observant, they mean observant their way. That aside, they are usually incredibly tolerant of all levels of observance, and even welcome curious drop-bys. This year brings not only free, family friendly services at thirty-six different locations around New York City, but also their Second Annual Shofar in the Park at the Central Park Bandshell, where you can hear some real pros demonstrate how that ram’s horn should be blown!

Beit Simcha Torah Congregation
Jacob Javits Convention Center
655 West 34th Street
This LGBT Synagogue has been offering free services for thirty-nine years, becoming so popular along the way due to their inclusive – and cost free – policy that, in 1992, they moved to the Javits Center, welcoming close to 4000 worshippers each day. Families of absolutely every kind are accepted here, and no test (or proof) of sexual orientation is required.

Ansche Chesed
251 West 100th Street
Family Services at this Conservative synagogue don’t require membership, tickets, or reservations. Children are grouped by age, 3 and under, 4-7, and 8 and above, and parents are welcome to attend as well, also at no charge. Programs are lead by students from the nearby Jewish Theological Seminary. Though all are invited for the ceremonial walk to Riverside Dive and the Hudson River for Tashlich, the casting of bread – and sins – upon the waters, youngsters have been known to shortcut the process via a bucket on the temple’s roof.

Rodeph Sholom
7 West 83rd Street
This Reform congregation offers main sanctuary tickets for members but, on Tuesday, September 18, the second day of Rosh HaShana, they are inviting the entire community, members and non-members alike, to a service for families with special needs. Expect music, interactive learning, Torah, apples and honey, and an American Sign Language interpreter.  The program will finish in time to join the rest of Rodeph Sholom for Tashlich in Central Park.

Kol Haneshama
805 Columbus Avenue at 100th Street
Since 2008, this Center for Jewish Life and Enrichment has been focused on enhancing the spiritual selves of Jews not affiliated with a particular movement of Judaism, with an emphasis on families. Free services will be available during the High Holidays for adults, and a separate one for children. Knowledge of Hebrew isn’t required, but reservations are.

Union Temple
Park Slope Jewish Center
1320 8th Avenue
Brooklyn
It’s a Brownstone Brooklyn Service with free tickets for all who make a reservation, and not just childcare, but also designated programs broken down by age, 1-6, 6-12, and a Youth Group Study Program for Teens is included. Seats are first come/first served, so an early arrival is advised.

Best High Holyday Services
1157 Lexington Avenue between 79th and 80th Streets
Would the website address lie to you? Billed as Best High Holyday Services, this not particularly modest organization has been providing free Rosh HaShana and Yom Kippur services for 29 years in a stated attempt to attract more members to their East Side Synagogue.  Anybody whether single, empty-nesters, young families/couples, intermarried, the interfaith dating, beginners, people interested in Judaism, seniors, students, Russian Jews, Reform, Conservative (though, by implication, not Orthodox) are welcome without ticket or reservation. Though donations are very strongly encouraged. We daresay, they are forcefully insisted upon.

Meanwhile, in a bit of fun irony this holiday season, The Wall Street Synagogue is offering open, free seating for all. Workman’s Circle, proudly socialist since 1900, is charging.

To find more High Holiday services near you, visit: http://nomembershiprequired.com/

May you all have a Sweet New Year!

— Alina Adams

photo credit: Alina Adams & Alan Kotok via Flickr