Most parents of children with neurobehavioral challenges have experienced the well-intentioned event that spins, unforgettably, into chaos and disappointment.
Maybe it’s an annual family gathering, full of anticipation because the kids get to play with cousins they only see once a year. For parents, it’s a time to relax and catch up with relatives while enjoying conversation and delicious food. You know it’ll be exciting and also a bit high energy for your child who struggles with large groups; you also vividly recall how challenging it was at last year’s event. But you figure she’s a year older now— maybe this time will be different. You cautiously hope for the best.
Rather quickly, you realize this year is not going to be different in the ways you hoped. Your child hits a cousin in frustration at not being able to go first in a game, then refuses to eat any of the food. There are tears and a timeout. The evening culminates in a meltdown that others would expect from a 3-year-old, but not your 11-year-old child. Shoes are thrown, awkward hugs exchanged. You feel hopeless and sad, thinking to yourself, There's no way we're coming next year. It’s not worth this.
Another family gathering, ruined.
Or maybe it’s that rare birthday party to which your child is finally invited by a classmate. You hesitate to take him, since experience tells you that kids’ birthday parties are too much, but because your child doesn’t receive many social invitations— and because he is beyond excited to be asked— you RSVP “yes” and cautiously hope for the best. You arrive, and can already tell that because the entire class was invited, it’s going to be a loud and chaotic two hours. There’s music and games and kids running everywhere. Other parents drop off their children and leave; you know that’s not something you can afford to do.
As you stand by, closely observing, your child integrates into the activities for the first 30 minutes, but becomes increasingly dysregulated. He attempts to grab a handful of cake, even though he’s been told repeatedly that it’s not yet time, and he needs to wait. He’s running circles around the room, ignoring any adult redirection, including yours, and then laughs hysterically while the rest of the kids sing Happy Birthday. He muscles into the huddle of kids at the table and attempts to blow out the candles. At the earliest possible moment, you inform him it’s time to go, but he refuses to leave, kicking and scratching and telling you to get away from him.
Another opportunity to socialize and make friends, ruined.
Or perhaps it’s that afternoon your house is full of neighborhood kids who are primarily the playmates of your younger, “neurotypical” child, but who also play with your older, neurodiverse child, more by default than out of a true sense of friendship. You overhear plans for a complicated game that you’re fairly certain your neurodiverse son will struggle to comprehend, and you also hear him ask to be included. His brother— who’s been through this countless times— initially voices hesitation, then relents. The kids sprint from the house before you can give it any more thought.
A short time later, your younger son is back inside yelling about how his older brother was cheating in the game, ignoring the rules and messing everything up. He does this every single time. I do NOT want him playing with us anymore!
Another opportunity to connect with his brother and the neighborhood kids, ruined.
“You ruin everything.”
How many times, as the parent of a child whose brain works differently than most, have you heard this phrase uttered by a sibling, a peer in a social setting, or communicated in the body language of an adult who knew better than to be so blunt in your presence?
How many times have you, too, flashed to that phrase on the heels of another family gathering or school event or dinner in a restaurant or long-anticipated family vacation that has ended in disaster by anyone’s measure, and your child and her challenging behavior is at the center?
It becomes, for many children who struggle with behavioral symptoms from a brain-based disability, the way in which they are perceived in their communities, including within their family. And it is only a matter of time before this exasperated phrase becomes ingrained into their own internal belief system, woven into their self-perception:
I can’t do anything right. I ruin everything.
And that, of course, has its own devastating ramifications.
So, what can we do when this sentiment appears to describe reality so accurately, yet we so desperately want to change that narrative for our children and our families?
When we’re working to parent our children differently— to shift toward a neurobehavioral perspective — this is one of many moments when it’s essential to take a step back, evaluate what we’ve come to see as truth, and ask, “What if—?”
What if each of these situations was a poor fit for our child, immersing him in environments that outstripped his cognitive skills, leaving him no option but to fail in meeting expectations?
What if she is actually not meaning to ruin everything, but instead working as hard as she can to navigate the situation at hand?
What if his meltdowns, explosive behavior and social failure was a symptom of his disability, letting us know he was experiencing pain and discomfort in that environment, instead of willful and intentional misbehavior?
What if there were ways in which we could have been more proactive in creating accommodations that might have helped her be more successful in each of these situations?
What if our children never actually ruin everything (something that implies willful misbehavior), but instead find themselves in situations or environments where they are not supported in the ways needed, considering how differently their brains work?
Rising Up From the ‘Ruins’
If we consider the role of brain function in each of the three scenarios above, it offers an alternate explanation for troubling behavior as well as a fresh range of options for how we might prevent our child from “ruining everything” the next time a similar situation arises.
There are some common brain-behavior connections that may be at play in these situations, and ways to parent differently in light of them:
A child with a brain-based, neurobehavioral condition inevitably experiences dysmaturity (a gap between their chronological age and developmental age). If this child is half their age developmentally, this will absolutely impact their ability to successfully engage in play with cousins, neighborhood friends, and classmates. How then, as a parent, can you support your child in these interactions?
It might mean closer supervision to help with skills that are still being mastered, such as negotiation, compromise, and following rules of play established by the group. Maybe it requires intentionally circling back with your child on what it means to be a friend, over and over again, until they can ever-so-slowly begin to integrate that information into their behavior. It could mean seeking out environments where children aren’t grouped by chronological age, so that your child has the opportunity to make friends that they’re better matched with, developmentally.
A child with a brain-based disability will almost always experience difficulty with sensory integration. This might mean your child is unable to tolerate loud, stimulating environments, even if they express a strong desire to be immersed in those settings (such as a friend’s birthday party). So, what can you as a parent do when your child begs to be included in these activities, but lacks the self-awareness to know when enough is enough for their stressed-out sensory systems?
Developing a concrete, thoughtfully-constructed plan in advance of the event (versus attempting to figure out what to do in the moment) is a helpful way to approach this. You might give serious thought to your role in all of this, the role of other support people, and what an inconspicuous exit strategy might look like when it’s time to depart. Speaking with the host parent ahead of time, covering expected plans for the event, also provides valuable information so that you can anticipate— but also help your child anticipate—what will occur and any challenging aspects the environment might present.
Disclosing to others within your child’s life that your child has a physical disability with behavioral symptoms is incredibly important if you want to avoid the misconception that they “ruin everything.” As children grow older, lagging cognitive skills and dysmaturity often become more evident. Extended family who are infrequently visited may require more year-to-year education and updates on what to expect. Again, proactive planning is a must with these high-energy, high-stakes events.
What if your child needs more supervision throughout the day, so they can be supported when they become over-tired or over-stimulated? Are there others in the extended family who can help with this, so it doesn’t have to fall to one person? Do they really have a clear understanding of what you need and how to help? Can they be invited into a place of greater understanding? Are there ways that your child can take breaks from the excitement throughout the day— a short walk, an invitation to color in a separate room, a breather outside— to prevent spiraling into cognitive overload and dysregulation?
Thoughtful, honest and age-appropriate conversations also need to occur within the closer family unit, specifically with siblings. Parents should ask: has there been intentional time set aside to speak with siblings about their brother or sister, the ways in which their brain works differently, and why they struggle to participate in games the way other kids might? Have I articulated clearly how the behaviors they see in their sibling are not intentional, but instead are related to brain differences?
Siblings— younger and older— need parents to provide missing information so they understand that their brother or sister doesn’t intend to ruin everything. They need to understand the accommodations their sibling requires, such as providing more time for taking turns in games, because “think time” is a little longer. Or, that they may need to have the rules explained again, because they have a hard time remembering. Siblings of a neurodiverse child are missing information, just as we were before learning of the brain-behavior connection; we need to help them fill in the gaps to create greater understanding and empathy.
Finally, if there is a parenting partnership in place, intentional time should be set-aside to reflect on situations in which things might have broken down while supporting your child, so that a better plan, with additional accommodations and both parents’ involvement, can be initiated the next time. This might be done in as little as ten minutes a day, using the time to brainstorm accommodations like this:
Taking separate cars to the event, so that when your child has reached their limit and can no longer tolerate that particular gathering, one parent can leave and provide respite, while the other parent stays longer with the other children.
Strategizing reasonable trade-off times, deciding which parent will begin by closely supporting and supervising your child, so that the other parent can relax and enjoy the event until it’s their turn to switch out and support.
Agreeing on who might assume responsibility for disclosure and expectation-setting with other family members or friends involved.
Discussing what a successful trip/event/gathering/outing might look like, and then the steps needed to realize that vision within the context of brain-based parenting.
So often, we recognize that our child is struggling behaviorally because of brain-based challenges, and still can’t help but feel as though they ruin everything. We might even have thought we integrated all the necessary accommodations and still— disastrous outcome.
But when we have that thought, or hear it from someone in our child’s life, it’s an opportunity for us to recognize that although we did our best to consider brain function and provide accommodations, there is likely more that we can do.
There are always patterns with behaviors, the brain function involved, and the poorness of fit within in an environment. The outcome is never as random as it appears on the surface. But in order to identify those tell-tale patterns, there needs to be a practice of non-judgmental observation and frequent reflection on what can be done proactively next time to help our child. With that approach, parents, children and acquaintances can rise above ‘the ruins,’ move toward more frequent, reliable and positive social interactions, and break away from the shame of being 'the kid who ruins everything.'
Interested in learning more about how to identify the brain tasks your child has difficulty with or about the work Eileen does with parents and parenting with a neurobehavioral approach? Visit eileendevine.com and reach out to her directly. She’d love to hear from you.
Eileen Devine, LCSW is a parent coach and consultant for families all over the world impacted by neurobehavioral conditions. She is also the founder of The Resilience Room, a close-knit membership community for parents of kids with neurobehavioral conditions. She lives with her husband and two amazing kids, one of whom happens to live with FAS. For more information, visit eileendevine.com.