Monday and Tuesday were the Jewish New Year. I went to temple and prayed to be inscribed in the Book of Life (vastly preferred over the Book of Death). I prayed for good health for our family and friends. I added a prayer for God to continue to give me the strength and smarts to raise Max. And I prayed for us to find a way to include Max in temple.
In the past year, I have experienced much frustration trying to find a local congregation that offers services for kids with special needs. It seems like there are more options in major cities, but once you hit suburbia, not so much. Friends have informed me of programs that aren't so close to where we live. Thing is, I would like to find a temple with inclusive services in our neighborhood, where our family can be part of a community we see throughout the year. I don't think this is too much to wish for.
The challenges we've faced are hardly unique to our religion; I've heard from parents of other faiths who have similarly felt like outcasts in their congregations. If ever there was a place that should welcome children with disabilities, you'd think it would be a house of worship. But that hasn't been our experience.
When we moved to our neighborhood 10 years ago, we joined a temple that had a friendly, down-to-earth vibe. For years, we were content there. We liked the community, the family events they had on the Sabbath and at holidays, the middle-aged couple who ran the children's Rosh Hashanah service with the over-the-top charm of a Saturday Night Live skit. Max didn't join in; he has sensory issues, and crowds and noise unnerve him. So we'd leave him in the temple's daycare during services. Sometimes, I'd attend temple events alone with Sabrina, or Dave would take her.
When Max was 8, I grew disgruntled; he didn't belong in kiddie care during services. Sure, he was content, but we could have just as soon left him at home with a babysitter for all the spirituality involved in playing with toys in a nursery room. Max needed a program that would engage him, but not overwhelm him.
As I sat in the pews last September and listened to the rabbi's speech about her child's hospital stay and the importance of treating the sickness with kindness, I seethed. It took every speck of willpower I had to not stand up amongst the sea of congregants and shout "WHAT ABOUT MY CHILD WITH SPECIAL NEEDS?!"
A friend recommended I get in touch with the temple's head of community to discuss Max's needs. We exchanged messages; finally, we set a time to chat. The day before, she sent an email that said, "I want to be clear that I am not sure what I can provide in light of the financial difficulties facing synagogues."
Ooof. I felt as if a door had been slammed shut in my face. To be sure, temples are facing financial challenges. To be sure, ours had just undergone a multimillion dollar renovation. How much could it cost to run a service for kids with special needs?! Was it possible there might be a special ed teacher or pediatric therapist in the congregation who could help? Weren't there any options to discuss?
I was so put off, I never had the conversation. That's when I first thought about changing temples. A few months later, the director of congregational learning emailed an invite to a summit happening at a temple in another town on building inclusive communities. It was taking place on a Sunday, from 12 to 4. Did I want to go?
Um, well, nope: I did not want to be the person charged with spearheading special needs programming. It wasn't that this wasn't a priority for me; it was all the other priorities in my life related to Max.
In the last week, my priority was getting Max's blood tested to make sure levels of his anti-seizure medication are OK. My priority was calling his teacher to discuss alternative ways for him to do homework, given that writing is difficult for him. My priority was emailing back and forth with his speech therapist about whether Max might ever be able to articulate the letters p, b, d and k, since he's not yet saying them. My priority was emailing with his occupational therapist to discuss what size t-shirts I should buy so she and Max could practice lifting and them off his head, as he is not yet able to dress himself. My priority was to research a stroller that would look non-babyish for a boy who is almost 10, because Max tires when we walk long distances and he's getting too big for my husband to carry him.
Making sure my son can function, encouraging his development, keeping him healthy and enabling him as best I can are my priorities as the mom of a kid with special needs. I would like a temple to make it their priority to include my son, and kids like him, in services. I will be part of a committee, yes, but I am unable to make it my mission. I am already in charge of so much. My son is already excluded from so much. Help us, for the love of God.
I started calling around to congregations in our area to see what our options were. Sample call:
Me: "Hello! I am calling to find out if you have services or programming for kids with special needs at the temple."
Lady on phone: "Not that I know of, dear."
Another temple had only an interpreter for the hearing impaired. The majority had nothing. Finally, I got in touch with the congregation that I'd heard had dedicated special needs services. The rabbi seemed warm on the phone. The services, he explained, had been created for kids with autism; no other kids in the congregation had cerebral palsy, as Max does.
"Oh, that's OK, Max passes!" I said, laughing. And it's true: Max's speech difficulties and sensory issues sometimes make people think he has autism.
This is the temple we went to on Rosh Hashanah. I took Max there beforehand for a quick walk-through; he kept shaking his head "No" (transitions to new places are tough). That first day of the holiday was a madhouse. Max stood outside the temple doors, wailing. He refused to go in. I had my doubts as well; I missed the cozier setting of our old temple. Dave took Max home, Sabrina went to a program for grade-school kids, and I headed to services with my brother-in-law.
First, though, I peeked into the special needs service. There were a handful of families, mostly with teens, all participating enthusiastically. I met the woman who runs special needs programming, and she seemed both welcoming and driven to find a way to include Max.
We might be able to ease Max in by coming more regularly; there are Sabbath special needs services throughout the year. Once he felt more comfortable, we could possibly coax him into attending events, too. We're lucky he's been part of The Friendship Circle, which provides programs for Jewish kids with special needs around the world. The other choice is do some version of services at home. For Rosh Hashanah, we could read a book, eat apples and honey for a sweet New Year, and get across the key message of this holiday: being better people and treating others with kindness.
It's a definite possibility. But I am not yet willing to give up on Max being part of a temple, for all the reasons any parent of any kid takes them to a house of worship -- and because I would like attendance to be part of our family life. With the growing awareness about children with special needs, perhaps more houses of worship will commit to special needs services and programming in upcoming years, ones geared toward kids with sensory issues and kids with intellectual disability.
It is the Jewish thing to do. It is also the Catholic, Protestant, Episcopalian, Islamic and Hindu thing to do. Synagogues, churches and mosques seem aware of the necessity to be physically accessible to people with disabilities. You'd think they would feel compelled to answer to a higher authority when it comes to spiritual accessibility.
I sat next to my brother-in-law in the crowded sanctuary, chanted the prayers, sang the familiar melodies. I had some hope. But I felt so very alone.
More to read from Ellen from her blog Love That Max:
A Bill of Rights for Parents of Kids With Special Needs
So, what do you do when people stare at your child?
On the journey of special needs parenting