Exit Ramp: Five easy ways to support families raising kids with disabilities
Current data from the Center for Disease Control cites that one in 68 children is being diagnosed on the autism spectrum. That means that most of us know at least one friend, neighbor, colleague, or family member whose child is on the spectrum.
Besides autism, we may also know families raising kids with other kinds of cognitive, physical, or learning disabilities. While one in five people has some kind of disability, because of genetic diseases, this number may actually be higher in the Jewish community.
In my recent ELI Talk, “Faith, Companionship and Vulnerability: Standing With Families Who Have A Child With A Disability,” I share my journey of how I went from standing on the outside looking at families raising kids with disabilities to becoming a mom of a son with serious communication, social, and sensory impairments. In my talk, I share how I came to understand my son’s autism and also how I imagine a community in which people reach out and try to connect with families like mine, even when they feel unsure.
When my son was newly diagnosed and I was overwhelmed and scared, what saved me were the words and gestures of my wise, compassionate friends — some who were fellow special needs parents, and some who just intuitively knew how to be there and support me.
If you’re a friend, a sibling, a parent, or a co-worker of someone raising a child with some kind of disability, I’d like to suggest these five easy ways that you can make a difference in that family’s life:
• Say hello and smile: Parents raising kids with differences can feel on the outside in many social situations. In my ELI Talk, I describe standing and pushing my son on a swing while other moms stand together across the playground from me, drinking coffee and talking. If you see someone who is off to the side — at a party, at a school event, or Shabbat kiddush, go over and say hello. Even in moments when you may catch a parent struggling with a child’s behavior, offer a supportive smile or warm nod.
• Reach out: Our schools and synagogues are doing a better job of including children with disabilities and their families — but that doesn’t automatically translate to social inclusion. If there is a child with special needs in your child’s class, seek out the parent(s) and see if they’d want to meet up for a playdate or come for Shabbat dinner. Invite the child to your kid’s birthday party — but know that parties can be very overwhelming for kids with sensory challenges. A more low-key meetup may work better.
• Advocate: If you’re on the PTO, on your neighborhood committee, or the synagogue board, make sure that you’re speaking up about the needs of families who have a child with disabilities. Planning a picnic or Shabbat at the park? Check and make sure that it’s wheelchair accessible. On the committee for your Purim carnival? Make sure that a quiet room is available. It’s hard for parents to always be the ones to speak up and remember about access issues — it helps if everyone can be an advocate.
• Offer respite: If it’s a close friend, one of the greatest gifts that you can give is an hour here and there with her child. It can be hard to find sitters when kids have complex needs, and families also have so many expenses with therapy, medications, etc. that aren’t covered by insurance and they may not have that extra cash for a sitter. Even if it’s just an occasional offer, it will be greatly appreciated.
• Acknowledge your uncertainty: It’s okay to not know what to say…what your friend needs is a listening ear and the knowledge that you care about her and her family. “I’m here for you” is always a helpful phrase if you’re not sure where to start.
Please reach out to me about the ways that you’ve supported families raising kids with disabilities in your community. And parents, please share about the words and actions that have made you felt sustained and loved.