The year my son was 4, I was navigating the (public special education kindergarten IEP) process known as Turning 5 in NYC. My friends Alma and Jenny (not their real names) both had children with similar needs, around the same age. We decided to start a text thread to support each other during the arduous process.
It was a stressful time, to say the least.
I toured a dozen schools. I worried all the time that my son wouldn't be placed in an appropriate school for his needs. That text group is what helped me survive the year. We encouraged each other and swapped tips as well as horror stories. When our kids were all placed in appropriate school settings, we celebrated together!
Did it end there? No.
There are many hurdles when navigating this system. But getting over that big one gave me confidence, and showed me something I'll always remember:
We need each other more than we know.
In Greek mythology, Atlas holds the weight of the world on his shoulders.
In Encanto, Luisa carries unimaginable burdens like it’s nothing… until she cracks. Nobody in her family understands what she’s experiencing.
Each carries their weight alone. And that makes it so much harder.
Parents of neurodivergent kids are the most prone to stress, burnout, and isolation, but we don’t have to carry our burdens alone. Really.
Imagine if Atlas had a community of Titans, even a handful, to reach up and carry the weight of the world alongside him? Imagine Luisa telling her family that she’s tired, that she can’t carry the piano right now, and they found a way to give her a break, or even simply listened to her?
What if you didn’t feel so isolated?
As parents of neurodivergent kids, we’re starved for time and space of our own, so why would we share the little time we have with people we just met and don’t have much in common with - other than our shared parenting struggles?
We often think what we need is more information, when really what lifts our burden is being heard and understood.
We might pick up a nugget of a resource that makes life easier. We might want to vent a little without being judged. Beyond that, there’s healing that happens when we’re listening without needing to solve, or we’re being heard by other parents who can laugh and cry alongside us, because they’ve been there.
The definition of trauma is not a particular event. It’s the point within each of us when we’ve had to deal with too much, for too long, without the resources to cope.
Every one of us will have our own tipping point, and there’s no shame in it. It’s hard raising kids with disabilities in an ableist world.
We may all have different resources, and different children of different ages with different behaviors, but we share this world - and the obstacles to getting our kids the support they need. There are experiences unique to families of kids with disabilities, like trying to find therapists, or other parents staring at our child at the playground - who have no idea the effort it took to get our kid there. Birthday party meltdowns - or no birthday party invites at all…
It’s not more heroic to struggle through raising neurodivergent kids alone. We can all benefit from feeling the solidarity of other parents who understand the hard days. There’s healing to be found in community.
Find a way to create a sense of belonging and community. There are communities available on social media, in-person, WhatsApp, or you can create one like we did, with a few parents on text. Whatever’s practical and possible and nourishing for you. It won’t be perfect. You might not have a lot in common with others in your group, but go for whatever is available right now and see where it takes you.
Maybe you have no childcare, and an online group meets your needs. Maybe you hate the impersonal nature of Facebook groups, but that’s where you learn about a local get-together in your area. Maybe the venting that happens at an in-person group makes you cringe, but you make one friend there and call each other every Friday at lunchtime to catch up. Remember that these relationships evolve.
Get in the habit of reaching out, and it will get easier. Even an imperfect connection is better than no connection at all. Growth and resilience happen when we share the burden.
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