06/20/2025
Blog Entry:
How Long Will The World Wait
In today's world, many events are marketed as "inclusive" or "sensory-friendly," giving the impression that they are designed to welcome all children with special needs. However, for families like mine, this assumption often oversimplifies the unique challenges we face when navigating these situations. Allow me to share a bit of our journey with Rocco, our profoundly autistic son, and shed light on why true inclusivity goes beyond just labels.
First and foremost, getting Rocco out of the house is a monumental hurdle. The act of getting him dressed feels like an extraordinary feat in itself. Once he is finally in the car, we often encounter another challenge: Rocco's expectations. He associates car rides with only three destinations—school, McDonald's, or his grandparent's house. When faced with a new location, it can take considerable effort to coax him out of the car, as his comfort zone is limited to the familiar.
Assuming we overcome these initial obstacles and reach our destination, we soon face yet another hurdle: the journey to the event itself. Often, the distance from parking to the event is underappreciated. Even if an event is labeled as sensory-friendly, the walk may not be manageable for him.
Upon arriving, the supposed inclusivity can quickly unravel. Rocco is confronted with other children who stim, scream, or make noise—the chaos of their excitement can be overwhelming, especially if there's an echoing sound. If there are rules regarding footwear we'd have an issue as he's very reluctant to remove his shoes (I recall an instance where he had to walk barefoot and was mortified). Any requirement to follow instructions presents a significant barrier, as Rocco does not comprehend basic one-step directions, making participation in organized activities nearly impossible. Add to this the sensory challenges: the smells of food being prepared can be aversive for him, as he has a very limited diet, eating only one specific food.
In our pursuit of exploration and creating experiences for Rocco, it feels relentlessly unfair and heartbreaking when we realize that places like Chuck E. Cheese are no longer options for him. The world outside seems vast and inviting, yet the intricacies of his needs prevent us from delving into these adventures.
Inclusivity is not one-size-fits-all; it requires a nuanced understanding of each child's individual needs. As we navigate these challenges, we strive for a world where Rocco can discover new experiences without restraint, and we await a time when those opportunities are abundant and accessible. It also puts a huge weight on how much Lily, his sister who also has autism, is able to do. It's not fair and heartbreaking that we can't explore everything out there. There's a whole world for him, just waiting.
How long will it wait.
*We're not blaming anyone! Just explaining how our experiences have been.
Autism New JerseyLincoln Park NJ Special Education Student Advisory Group-SEPAGLincoln Park (NJ) MomsRoccosJourney InspirationsValerie Cullari
