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Advocating for Your Child’s Sensory Needs This Holiday Season by Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

Updated: 6 days ago

Advocating for Your Child’s Sensory Needs This Holiday Season by Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador, Bergen County Moms

 

We brought our kids to The Christmas Spectacular at Radio City for the first time this past weekend and it went better than I could possibly have imagined. This was a lower-sensory—advertised as “autism-friendly”—showing of the seasonal staple, and it delivered. Supportive features included adjustments to lighting and sound, flexibility for patrons as they flowed into and out of their seats, absolutely incredible volunteer hosts from the Theater Development Fund, and a break area in the downstairs theater lobby. 

 

Participants from day programs for adults with developmental disabilities and residents of group homes poured into their seats in groups of five to ten at a time. Determined, possibly misguided, parents of children with high or low muscle tone escorted their loved ones up and down a sweeping staircase. (No judging, we were among them!) Joy felt in the heart wasn’t always expressed on the faces of those taking in the show, while others rocked in their seats to the beat of the music or danced uninhibitedly out of their chairs. One teenage boy was having a meltdown on the floor before the show began, though I’m not sure how that worked out; this audience in particular was unfazed. See, we were among friends, safe people who neither judged nor criticized and who in many cases admired the diversity among the crowd, seeing in other people’s children what they see in their own.  

 

For all of the features offered during this “autism-friendly” performance, what we benefited from most was the assurance that our kids could be themselves and enjoy the show in the way that worked best for them. For my son, Henry, that meant eating all the popcorn and cotton candy he could fit into his belly at 9am, as well as asking me “how many minutes” remaining, literally every few minutes. For my daughter, Hope, that meant mirroring the dancers’ choreography and verbally imitating all of the sounds she heard—the clicks of the reindeer’s hooves, the jingling of the sleighbells, the tip-tapping of the Rockettes' shoes on the stage beneath their feet. At one point, Hope was so in awe that she took my hand and placed it on her chest, in what could only have been her need for me to help contain her bursting heart.

 


I often have to share with groups or friends when Hope “can’t” do something. That’s the easy way to say it, but it’s also the lazy way because her needs are so much more nuanced. We strategically decided to skip Brownies in October because she “can’t” ride in a tractor to go pumpkin picking, but the real issue was that the selected farm offered no accommodations for children with sensory disorders, and I couldn’t bear the thought of her being inconsolable in front of her troop. We don’t attend indoor sports activities provided through organizations such as Special Olympics because she “can’t” handle the echoes and often loud voices and music that are typical of these environments, but other issues compound the problem, including untrained volunteers hovering over her, pushing for language that doesn’t come, or on the opposite extreme, excusing her reluctance, which often results in nonparticipation.

 

All things considered, we were never going to see The Christmas Spectacular if not for the “autism-friendly” offering, even if it was before Thanksgiving, even if it was at 9am. Although it’s hard to feel left out of mainstream activities and traditions, it can be harder to try something and realize how much we’ve rattled our daughter’s nervous system, and for what?

 

There are some fantastic graphics circulating on social media, and I particularly love this one from The OT Butterfly. She shows how the “cup” of a person with sensory processing disorder is much smaller than that of someone without, so their tolerance to sensory input reaches its threshold before a bystander reaches that same level of sensory overload.

 

And now to the dismay of our kids (or spouses! or ourselves!) with sensory sensitivities, we introduce during the holidays the parties, the get-togethers, the music, the food, the lights, the crowds, the traditions that are often loud and unmindful. And even if we’ve been supportive of our children who are sensory sensitive and cultivated spaces that support their needs, now we may find ourselves as caregivers thrust into undesirable situations with family who we see too infrequently for them to comprehend our children’s differences. Do we explain? Do we teach? Do we avoid? Do we stomach the hurtful comments and hold in the tears for later?

 

My advice to parents as a parent raising a child who is sensory sensitive, is simple: Don’t change what you have found works simply because it’s the holidays. Some of what fills Hope’s smaller sensory cup is that she absorbs every environment she enters, and the inputs add up. Every smile, every laugh, every shout, every screech or cheer, it all enters her system and stays there, sometimes draining out slowly until bedtime, sometimes so intense that it dumps out overnight and disrupts her sleep. If she needs to excuse herself to a private area of the house to regulate, I will never stop her. If she needs to go home early, we might try to extend our time, but she gets to go home when she’s ready. If she needs to zone into a familiar movie or soundtrack on an iPad during a formal meal plated in the dining room at grandma’s house, she gets to have her iPad during a formal meal plated in the dining room at grandma’s house. (My kids are lucky to have two grandmas who don’t care about that sort of thing!)

 

But maybe you’re not raising a child with sensory processing difficulties. Maybe you’re about to encounter one this Thanksgiving and will find yourself profoundly caught off guard, knowing yourself to be an open, accommodating, loving person, baffled as to why asking your beloved family member if they want more mashed potatoes seems to have set them off. This wasn’t your fault. And it wasn’t the child’s fault. Their cup simply overfilled, and it will take time to drain.

 

And it will drain. And they will be back. And there is no doubt that you will be ready and waiting with open arms when they return.

 

What am I listening to this month?

I can’t get enough of The Lucky Few podcast, in particular this week’s Episode 284: Why Does Inclusion for People with Down Syndrome Have to be a Distant Dream? This episode explores a PSA recently put out by the National Down Syndrome Society about a fantasy town called Town 21, where people with Down syndrome can live full, meaningful lives, in ways our current society restricts.

 

What am I watching?

Two incredible movies are out this month. Unseen isn’t new but has special FREE screening opportunities throughout this November, aptly during National Family Caregivers Month.

 

The other is Out of My Mind, which is streaming on Disney+ beginning on November 22. Based on a YA book of the same title, this is the story of a girl with cerebral palsy (played by an actress with cerebral palsy), who both literally and figuratively discovers her voice.


What am I reading?

She Kept Dancing: The True Story of a Professional Dancer with a Limb Difference is a children’s

book written by the first Rockette with a visible disability, Sydney Mesher, and it’s quite good!

 


Elena Croy | At Her Own Pace, Bergen County Moms
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.









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