How Do We Access Community? By Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

Henry and Hope with a friend from Joyful Noise, St. Elizabeth’s children’s choir. 

One of the reasons I love to write is that writing provides the opportunity to imagine, work, knead, reimagine, process, and reprocess ideas before others ever have a chance to know what I’m thinking. Along those lines, I came across a personally distressing headline in mainstream news this week about ways to avoid ruminating, and while I apologize to anyone in the mental health space who may disagree with what I am about to share, I find ruminating to be one of the most productive ways of validating, or invalidating, my thoughts and actions as I learn to raise my children in a space so radically different than from the one in which I was raised: disability. 

Despite all children being unique, even those with the same diagnoses or lack thereof, professionals and fellow parents often have the tendency to categorize individuals into similar needs-based groups, which in some cases can be accommodating but, when implemented carelessly, can actually be needlessly segregating. And let me tell you–a parent raising a child with a disability who witnesses a typically developing child in their natural environment for the first time is a breath of fresh air withheld from many of us for a multitude of cultural and systemic reasons. 

Hope visiting Bergen County Horse Rescue with her Brownie troop.

For example, I had no idea that some kindergarteners struggled to sit through group storytime because when my daughter, who has Down syndrome, struggles to sit through storytime at school, she is provided an intervention or there is a behavioral strategy written into her IEP (Individualized Education Program) that a dozen or so staff members have to implement. But other kids can flip their shirts over their heads, stare into space, momentarily lay on their friends, and it’s simply called “age appropriate behavior.” They’re gently corrected and nobody is keeping track of these behaviors on a log sheet that later goes home to their parents. We simply trust that with the right modeling, children will outgrow some of these little quirks. However, children with developmental delays are often not afforded that time or space to just be quirky little kids doing quirky little kid things. 

I also had no idea that children could refuse their lunches and demand an inordinate amount of snack food after school until my son started having playdates and we were breezing through popcorn, cheddar bunnies, M&Ms, pretzels, pizza bagels…he’s seven! But here I was, explaining to school staff that, “Yes, my daughter did say she wanted a sandwich, grapes, and cookies today, and no I don’t know why she refused it…” (Probably because the lunchroom was too noisy or she was withholding in the bathroom, but that’s a story for another day.) Some parents get to just live in peace and offer snacks after school. I had no idea!! 

I had no idea because for the longest time, we were segregated from typically developing peers based on antiquated systems ripe with disability bias in public spaces. 

Henry at KidStrong, showing up in his own way in his unique body.

If there’s one thing I learned in 2020 it is to believe others’ lived experiences. This carries over into parenting in general, especially when we honor a child’s fear or intolerance of something, understanding that although this something may seem minor to us as adults, to children these things can be all encompassing. Now imagine experiencing a fear and being unable to articulate the specifics of that fear. Then imagine what you would do to protect yourself when your perception is that nobody is protecting you. For us, this has manifested through eloping (running away or escaping), refusal, sensory overstimulation, and skills regression.

That is our lived experience. And what we experience in our household with Down syndrome, neurodivergence, and limb difference is different from what another family experiences with one, two, or all three of these in theirs. We may have some overlapping needs, but our children are stars and our families are constellations all their own.

So, then, how do we access community if we’re all so different? 

Some of our good friends on Ridgewood All Stars baseball team. 

Our healthiest communities are built not on specifics but around generalities. We’ve found community among those with the same diagnosis when hypervigilant confidentiality rules threatened our connections, regardless of support needs. We’ve found community among those of the same spiritual faith, though we first had to carve a path through traditional religious barriers when one wasn’t readily obvious. We’ve found community among those experiencing similar societal struggles as a means of surviving and thriving through injustices. There is a strategic mindset behind this: 

1. Embrace the fact that you deserve community. 

2. Believe that there is no shame in diagnosis, support needs, interests, how your child plays, what you need socially, etc.

3. Understand that once you’re “in,” it may be your responsibility to find others who are seeking community just as you once were. 

When we separate ourselves from one another based on preconceived ideas, we miss out on so much. To think of our world in binaries is to miss the exquisite nature of the human experience, and yes, disability is a natural part of the human experience. I believe we are responsible for one another while we’re here on Earth and that we have an abundant capacity to look out for others as much as we look out for ourselves. 

I am personally grateful for the Bergen County Moms community and the wholeness with which this platform approaches individual needs and interests. Thank you for welcoming my perspective into your mind each month, but please remember: I do not represent an entire community. I am one writer with one voice; one mom raising two children. We must listen to and believe the lived experience of all people, especially the vulnerable, who if given the chance may end up finding space nearest and dearest to our hearts. 

What am I reading? 

I’ve been up to my eyeballs editing The Adaptive Toolkit for Potty Training Children With Disabilities, which publishes this spring. The book is coming out through an independent publisher, Four Clovers Publishing, is written by Allison Jandu, The Potty Training Consultant, and co-copyrighted by Extra Lucky Moms. With personal recollections from moms who have potty trained their kiddos with disabilities–autism, Down syndrome, and cerebral palsy, among the group–the book balances technical information, loving support, realistic goals and strategies, and a familiar tone to truly support, once and for all, parents who are embarking on what can be one of the most daunting phases of early parenting. 

What am I listening to? 

A BRAND NEW podcast launched this month that’s local to Bergen County and I couldn’t be more excited about it!! Kristi Bergeron, Ridgewood mom, created Diverg. last summer in response to a gap in neuroaffirming educational and social resources for neurodivergent (get it? Diverg.?) individuals. The brand has grown from trial camp days to after-school programming and now this awesome podcast. 

What am I watching? 

There are two Pixar shorts that have completely stolen my heart, and if you haven’t seen them already, I hope you can find the time to watch them. The first is Loop, which came out in 2020 and explores a relationship between teens in an urban canoe camp, as one who has seemingly never been exposed to disability is paired with a girl of the same age who is autistic and nonverbal. The second is Float, which captures the stigma some parents raising children with disabilities encounter when they leave their safe bubbles and venture out into the world. 

Elena Croy with Hope + Henry | At Her Own Pace

Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.