Creating Space, Finding a Place
Our son’s school has an annual Halloween party in the basement cafeteria that the kids talk about for months. Hosted in the evening, it’s an opportunity for the students— grades Pre-K to 8— to meet up and socialize outside of school hours, and the primary opportunity to show off that year’s Halloween costume to school buddies. The cafeteria lights are significantly dimmed, replaced by multi-colored strobes to brighten the game area, the dance floor, and the line to the haunted house. There’s always a deejay, which means loud, high-energy music mixed with excited voices of kids running and dancing with friends. There are screams and shrieks coming from the haunted house. Kids of all ages chasing after each other, dodging through the crowd. Parents standing around and trying their best to converse over the party noise.
No one using “inside voices.”
This yearly party, an exciting event for so many students, including our son, is one of many environments that present obstacles for our daughter with sensory processing challenges secondary to her fetal alcohol syndrome. The flashing lights, the loud noises layered upon each other, the elevated, almost frantic energy swirling around amped-up groups of kids, the visual stimulation of decorations and costumes—all of it can send her into sensory overload in a breathtakingly short amount of time.
Yet, she wants to go.
Just like any other child.
She wants to see other kids and be with her older brother. She’s excited to dress up in her costume and have the chance to play games and win candy. Every year she begs us to let her go. She wants to be included.
Parents of children with sensory processing concerns face challenges in many facets of parenting. Two that come up frequently are supporting a child in participating in typical childhood activities and identifying activities that the family can successfully participate in together, ones that don’t result in rapid spiraling toward sensory overload. It’s a balancing act that can be difficult to get right.
When it goes well, your heart swells with gratitude that your son or daughter was able to have fun like “typical” kids, the type of fun that might serve as a lasting, happy childhood memory. When it doesn’t go well, it can be heartbreaking. It might bring up feelings of grief and loss, a longing for your child to simply have a “typical” childhood, enjoying the things other kids enjoy, while struggling with the reality that there are some ways in which this might never come to be.
In these situations, it’s easy to become frustrated with our children, even when we know it’s not their fault, and frustrated with ourselves for thinking it could “just work out.” It can increase feelings of isolation, of being alone in our experience, not wanting to “take a chance” on future opportunities for social engagement because we cannot be confident of a positive outcome.
The story shifts, all too often, into one of increasing isolation and resentment, a recurring narrative—true or not— that the child with any neurobehavioral condition or diagnosis “ruins everything.”
Our family is fortunate to live in a place where outdoor activities are endless and free. We have the beautiful Oregon Coast 90 minutes in one direction and the breathtaking Columbia Gorge and Mt. Hood National Forest an hour to 90 minutes in the other direction. Within a 10-minute drive from our front door we can be in Forest Park, the largest urban trail system in the country, with miles of forested trails to explore. We spend a great deal of family time in these natural wonderlands because they are one place where we all find joy, including our daughter.
She’s blessed with great physical strength and impressive determination, gifts that shine when we’re out hiking and exploring. Out in nature, she doesn’t have to keep her body still, keep her voice down, or be “contained” in any way. She can, at 9 years old, pretend she’s an animal who lives in the wild, and no one stares, thinking she’s too old to be engaged in such immature imaginary play. She can howl and gallop, scamper and climb. In these environments she’s an equal to her brother, challenging him to keep up as they sprint along a forest trail or across the coastal sand.
We have our best conversations when we’re outdoors, because our daughter is not devoting all her energy to managing a million other requirements (read: brain tasks) that are typically imposed in almost every other environment she encounters.
Outdoors, in nature, is the perfect environment for her in almost every way.
Equally important, it provides our family an opportunity to connect in a positive, tension-free environment where we can create memories together. Freed of the constant concern for how our daughter is managing, my husband and I can focus fully on both of our children, and each other. There is no need for us to be hypervigilant, redirecting, co-regulating. We call all just be.
Even with this readily-available outdoor outlet, and the frequent opportunities to create family memories, there is an inescapable sadness that we, or our daughter, simply cannot engage in activities that many neurotypical families and children take for granted.
Family outings to the movie theater (too loud and visually stimulating).
Attending a local college basketball game (echoing arena, blaring music, large and energetic crowds).
Dinner out at a restaurant of our choosing (clanking dishes, tables in close proximity, background music overlapping diners’ conversations).
Birthday parties involving large groups of kids, or loud “kid friendly” places (instant sensory overload).
Attending church consistently, and feeling a part of that community (echo of the church, need to sit still and listen, keep voice down, microphoned music from the choir).
Promoted events in the community that are “Just for Kids!” (organized chaos).
Over the years, we’ve walked through a necessary mourning process, accepting that these types of events or gatherings can’t also be a part of the story of how our family connects and creates memories. Alongside this grief is the realization that we must always think three steps ahead in our parenting, with a level of vigilance that never completely dissipates, in order to experience a measure of success in social situations. There has been a slowly crystallizing realization that the opportunity for spontaneity is rare, which brings its own sadness.
But while a certain amount of sadness, grief, and eventual acceptance might be inevitable, a steady progression of “failed” family experiences doesn’t have to be.
When I’m working with families, the questions for parents always come back to this: “Who is this individual child/young adult, and what do you know about how their brain works differently?”
And from there: “How does all of that fit with the particular environment we’re considering?”
This specific area of parenting— finding or creating appropriate space for success— is no different. The questions are the same:
What are the key elements that would describe the environment in question?
Who is your child, and what do you know about the way their brain works differently?
Does their developmental age meet the expectations of this environment?
Is the intended environment a good fit with what you know about the way their sensory system works (or doesn’t)?
Will they be required to use executive functioning skills (inhibiting impulses, transitioning from one activity to another on someone else’s timeline) or learning/memory skills (following multi-step instructions, remembering and applying rules to behavior) independently, and if so, can they do this?
Where can accommodations be made to help them be successful, given what you know about how their brain works?
What other pro-active plans do you need to put into place to increase the chance of success?
When our daughter wanted so desperately to attend that school Halloween party two years ago, we didn’t try to talk her out of it. We described what it would be like, what we thought she’d enjoy, the parts she might find distressing. We saw it as an opportunity to help her learn more about herself— which situations work for her, which do not. Collectively, we made a plan: If she wanted to go, we’d drive two cars, so either my husband or I could leave early with her if the event became overwhelming. Her other choice was to opt out completely, staying home with Dad to watch a movie of her choosing, while I took her brother to the party (with big brother promising to bring her home some candy).
She decided, that year, to stay home and watch a movie with Dad.
This past October, she desperately wanted to go again. Same as the previous year. We again described the expected environment, the likely challenges, again helped her process what may or may not work for her. The same options were presented: take two cars to the party if she wanted to give it a shot, or stay home and watch a movie with Dad if she’d rather not.
This time, she was adamant about going.
She and her brother got dressed in their Halloween costumes, we took two cars to the school, connected in the parking lot, and she and her brother ran ahead to the excitement inside. After about 10 minutes at the party, our daughter found us and said she was ready to leave. It was, she said, too much— too loud, too many lights, too many people. As planned, she and her Dad promptly left for home to watch a movie, her brother and I remained at the party. She was happy she went, and we were proud of her for trying it out, self-advocating and realizing that it was too much. There were no feelings of frustration because we had a plan, and part of the plan accounted for the high likelihood that she would want to depart soon after arriving.
Yes, it required more energy, more time, more intentionality, but it resulted in our daughter feeling a greater sense of empowerment and agency. Seeds, planted continuously for years now, are finally coming into bloom as she gains and demonstrates self-awareness of who she is and how her brain functions. Planning like we did for the Halloween party also helps preserve the sibling relationship between our two children, where our son can still partake in activities, even when his sister might need a quick exit.
Perhaps most importantly, it results in a greater sense of connection at the end of the night, rather than the chaotic experience of a stressful evening that felt like a failure for everyone.
Eileen Devine, LCSW works as a coach and consultant with families all over the world impacted by neurobehavioral conditions. She is the founder and creator of The Resilience Room, a close-knit membership community for parents of kids with neurobehavioral challenges. She lives in Portland, OR with her husband and two amazing kids, one who happens to live with FAS. For more information on Eileen and The Resilience Room, visit eileendevine.com.