Growing up, I had a cousin who was diagnosed with Batten disease, a rare nervous system disorder that affects infants, toddlers, and young children. Thanks to the meticulous love and care given to her by my aunt and uncle, my cousin lived until she was 11, which was much longer than anyone expected. And while she was alive, I was always extremely interested in how my family engaged and interacted with her. What their lives looked like from day to day, how they supported her, and how they adapted to her needs. It was all very inspiring to me.
Shortly after my cousin’s passing, I got a concussion that prematurely ended my otherwise promising volleyball career. Not wanting to abandon athletics altogether—and still feeling a kinship with the special needs community—I became a peer buddy for special needs students who were enrolled in the school’s Adapted PE Program. And that was all it took. I went to college the following year knowing that I wanted to be a special educator and help families navigate the behavioral challenges associated with raising special needs children, including those with Dravet, LGS, and other rare epilepsies.
When I first began my career, I remember thinking, “I only get these kids for 7 hours a day, 5 days a week. What about the rest of the time? How do their families—who don’t have the tools and resources that I have—figure out how to cope?” This realization is what made me want to devote my professional life to helping special needs families understand the behavioral needs of their child. To provide them with the structure they need to handle behavioral challenges while also enabling them enjoy life together as a family.
Over the years, I’ve learned a lot about helping families cope with behavioral challenges. And the first lesson I try to teach parents is that their child’s behavior is his or her system of communication. Your child’s brain isn’t wired like yours, so when behavioral issues arise, it really is like you’re speaking two different languages. So it’s important to recognize that your child’s brain works on a different operating system, and that with each behavior they’re trying to communicate something to you, be it a fear, a desire, or an unmet need.
"When I first began my career, I remember thinking, 'I only get these kids for 7 hours a day, 5 days a week. What about the rest of the time? How do their families—who don’t have the tools and resources that I have—figure out how to cope?'"
In order to figure out what your child is trying to tell you with each behavioral episode, you want to step outside of the behavior itself and just watch what happens—observe in detail the moments before, during, and after the behavior takes place. It can feel cumbersome sometimes...counterproductive, even. But if you start with one behavior, just one, and watch it play out in real time, you can start to figure out what your child is trying to tell you. And hopefully, this will enable you to cut the next episode off at the pass.
In my line of work, we call this examining the ABC data: Antecedent, Behavior, Consequence.
What preceded (and perhaps triggered) the behavior?
First, you want to try and identify the item or event that motivated the behavior:
(1) Does your child want attention?
(2) Something tangible?
(3) Is he or she trying to escape or avoid something?
(4) Is it a sensory need of some sort?
Whether it’s an obsession with ice cream (something tangible) or an aversion to bright lights (escape or avoidance), each behavior has an antecedent. And at the root of each antecedent is one of these four motivators. If you’re able to identify what that motivator or trigger is, you’re more likely to be able to mitigate the behavior in the future.
What was the child’s reaction to that trigger?
Impulsivity (such as elopement, or running away), perseveration (fixating on a topic or idea), hyperactivity, attention deficit, and aggression – these are all common behavioral issues for children with severe epilepsies. They’re ways that special needs children react to the world around them and, by extension, engage and communicate with us.
What was the outcome (positive or negative) of the behavior?
When we think of consequences, we often assume it’s a negative outcome (loss of a toy, time, a privilege, etc). But, in reality, any response to a behavior is a consequence—negative or positive. Think of it like this: when your child exhibits a behavior, you may react by raising your voice (negative) or you may stop what you’re doing to give your child more attention (positive). Which was probably what your child wanted all along, and they now know that doing something negative will get them what they want. You see, the consequence itself is what drives your child to either continue or discontinue the behavior. No matter their objective, children with special needs often use behavior (head banging, aggression, octopus arms, etc) to communicate that their wants or needs are not being met. So, to address this, you have to figure out whether the consequence of your child’s behavior will increase or decrease their chance of repeating the same behavior again and again.
And by the same token, if you shout praise every time your child asks/points/indicates what he or she wants rather than using behavior to elicit the reaction, your child will begin to build a better process for communicating and gaining attention.
ABC DATA IN ACTION
Let’s now take a look at how ABC data can play out in real life. I had a family once whose special needs son was obsessed with ice cream. Ice cream was just his thing. His antecedent, if you will. And if he wasn’t given access to ice cream, he’d pull his hair, throw things, you name it. (These were his behaviors.) It got to the point where the family felt like they couldn’t even keep ice cream in the house. This may seem like a small sacrifice, but it’s a big deal for so many special needs families who want nothing more than for their home life to feel as “normal” as possible. So the consequence, in this case, was that he was prohibited from having access to that which he desired most.
In this case, the child’s parents and I came up with a couple of really effective ways to address his ice cream obsession and the behavioral issues associated with it. First, as his teacher, I found ways to incorporate ice cream into his lessons at school—reading stories about ice cream, creating math problems that used ice cream as the manipulative, you get the idea. I was using his antecedent as positive motivator. And at home, the family and I developed a visual schedule that revolved around ice cream. This way, the child was able to clearly see that on Monday, Wednesday, and Friday evenings, he would be given ice cream. The schedule was not flexible, and most importantly, the ice cream access was not contingent on his being well-behaved. The family wouldn’t withhold ice cream if the child, say, had a bad day at school. Making the schedule non-negotiable meant that the child learned to trust the system. To trust that it was unwavering. And as a result, any anxiety the child normally felt about ice cream (and any behavioral issues normally associated with that anxiety) were diminished.
The other important benefit of having a visual schedule was that it absolved the child’s parents from being the bad guys. “I understand that you want ice cream today, but look at the schedule: today is Tuesday. It’s not an ice cream day. It’s not our decision. It’s the schedule. And as you can see, you can have ice cream tomorrow.” The parents no longer have to be negotiators. The child learns that if he trusts the system, then his needs will be met. And remember, there’s always room for flexibility in the schedule, but try to only change one factor at a time (i.e., the day, the item, or the frequency). If you change too many factors at once, it’ll be harder for you to identify the motivation behind your child’s associated behavior.
It’s also important not to call out the behavior itself, but to rather address your child’s feelings and then state your desired replacement behavior (i.e., what you’d prefer them to do instead of throw, hit, etc). For example, you could say:
“I noticed you seem sad. Let’s use one of your calming strategies. Would you like to listen to music or go for a walk?”
Eventually, you’ll be able to handle the unpredictable scenarios (i.e., being out of ice cream on a “scheduled” day) more easily. Now, when your child becomes upset, you can bring out the visual schedule and problem-solve together: write the change on the schedule for the next day, for example. And then involve your child in going to the store to ‘pick up the ice cream’ so to speak. The visual and verbal processing will help decrease your child’s anxiety, and ultimately their behaviors will become less and less frequent.
LEARNING THE LANGUAGE OF BEHAVIOR
It’s incredibly important—not to mention beneficial—to be able to decipher the language of your child’s behavioral issues. Doing so gives you a means of preventing them from erupting in the future. And it’s not just a matter of mitigating bad behavior. Gone unaddressed, behavioral issues can become bigger problems as a child ages. Think of it like this: if a child is obsessed with a certain cartoon character, say, and the obsession is never addressed, and if new and different interests are never introduced, then that cartoon obsession may continue into adulthood. And since social expectations only increase as we age, these obsessions tend to amplify his or her anxiety and aggression as the child becomes more aware of his or her shortcomings. Which is why it’s important to address behavior as early as possible. It’s not wrong for your child to be deeply interested in something specific, nor is it wrong for you as a parent to want to accommodate that interest. But it is important to teach children that there’s an appropriate time and place to indulge their obsessions.
It’s not always easy to step outside of situations that are so engrained in your personal, familial existence. But you don’t have to do it alone. There are resources that can help you, including people like me—outside observers trained to translate the language of behavior and help special needs children engage more easily with the world around them.
I often recommend the book The Behavior Code to parents. It’s written by two doctors who walk you through the functions of behavior and then give specific examples for children with each sort of issue. Highly detailed but written in laymen’s terms, it’s a great, practical resource for understanding the basics of behavioral issues and behavioral plans.
Though originally developed for children on the spectrum, The TEACCH approach is a great tool for shaping your understanding of how a child reacts to the world around them, and then rethinking the framework for approaching those reactive behaviors at home, at school, and in society as a whole. Don’t be deterred by the fact that it’s an autism program—the tools it teaches can be applied to any situation, including epilepsy. It’s a really great research-based, system that’s proven to work and is utilized by many people across the country.