‘Mommy, my brain doesn’t work here.’ - How a Brain First Approach Can Fill in the Missing Information
You don’t know what you don’t know.
How would you, as the parent of a child with a brain-based difference, even know you were missing information critical to your child’s success if no one helped you understand this? As a parent of a child with incredibly challenging and relentless behaviors, you simply cannot blame yourself if the only lens you had to view your child through was a behavioral one. After all, our society is deeply entrenched in the behavioral lens, and it can be hard to even imagine that there might be a different way to understand those around us, including your child who struggles.
I remember, quite vividly, a time nearly a decade ago, when I was experiencing frequent and intense waves of anxiety, stress, concern, sadness, grief, and confusion as a parent. It was my own period of feeling untethered, as though I couldn’t do anything to positively impact my child’s behavior. Looking back now, the most critical thing to understand about that time was how much information I was missing on how to parent my daughter differently, given her serious neurobehavioral condition (Fetal Alcohol Spectrum Disorder). Because I did not grasp that the things she needed from me were completely different from my “neurotypical” son’s needs, I tried harder and harder, doing the same things repeatedly, with heartbreakingly little success. As my concern for our daughter grew, my confidence in what we could do about it was quickly diminishing.
It seemed nothing worked.
Although we knew from a young age that our daughter was behind her peers in many ways, and that the FASD, her brain-based condition, was the primary reason for this, we still clung to this fantasy that with enough love and understanding she would catch up sufficiently in her lagging cognitive skills to fit in with her peers. My belief was that if we, as her parents, continued to provide her enough unconditional love, attention, and patience, she would get there. Her childhood (and then subsequently, her adulthood) could still be “normal."
We were missing information that might lead us to believe anything different.
With this positive, “can do” attitude fueling us and our parenting approach, we decided to enroll her, at the age of four, in a pre-kindergarten class at the small private school her older brother attended. We had a thoughtful plan, crafted with input from her early-childhood interventionists, that would incrementally increase her time in the classroom. With this plan in place (in addition to our unconditional love, attention and patience), we figured our daughter would be well on her way to school success, and that easing into kindergarten the following year would be relatively smooth.
This was a grand plan, indeed.
“We’ve got this,” I thought.
It turns out that we didn’t have this, whatever this was — at all.
When I’m working with parents, there are stages of change I see them move through, at their own unique pace, as they progress from a behavioral lens to a Brain First lens. These stages underline the process of understanding their child's disability or illness as a brain-based condition, and then achieving the paradigm shift from thinking of “brain” instead of “behavior.” During the first stage of this journey, parents and caregivers frequently have little to no information about the brain-based approach. They are chronically frustrated as they do their best to parent through a behavioral lens, meaning targeting the behavior for intervention and hoping that each new behavioral intervention they attempt will be successful. During this stage, numerous parenting techniques have typically been tried and proven unsuccessful, and the behaviors they’re meant to mitigate, or stop altogether, continue to worsen. Parents find themselves yelling more, breaking down into tears more, and growing increasingly hopeless.
During the time my husband and I were making school arrangements for our daughter, we knew very little about the brain-based approach. The idea that there was an alternative way to parent her that did not follow the “tried and true” parenting techniques that many are familiar with (timeouts, consequences, sticker charts, lecturing, threats, bribes — to name a few) was largely foreign to us.
Most school days, we’d get a morning call from the office notifying us that our daughter was having a difficult time adjusting. She was running from her classroom and down the hall, calling out for her brother, who she knew was in a nearby classroom. Or she was running circles around the classroom and rolling on the carpet, when she was supposed to be sitting still. She wasn’t completing, or even beginning, classroom projects. She was growing increasingly frustrated with the demands being placed on her, and in turn, showing more aggressive behaviors than we’d ever previously seen.
She was clearly miserable, and honestly, we were, too.
Parents, teachers, aides, administrators— we all tried very hard to carry out the plan of “love, understanding and patience,” but despite everyone’s best intentions, it was not working. What we didn’t know then, but see in painfully clear ways now, is that this environment was in no way conducive to what she needed in order to be successful, given her brain-based disability.
About two months into this private school attempt, there was a particularly challenging day for our daughter which required me to leave work and go to the school to see if I could magically intervene. I met her in the classroom and decided to take her for a walk outside, so we could both decompress. I didn’t say anything, mostly because I had no words left. Talking sternly to her about her behavior had no impact (only making it worse, and, as I see now, causing her to feel shame). Attempting to bribe her into good behavior had no effect. It seemed my words were worthless and nothing “motivated” her.
So, we walked through the parking lot and school playground in silence.
After walking for a solid ten minutes, she looked at me and said this:
“Mommy, this big school makes me sad. My brain doesn’t work here.”
Her words were so simple, yet so powerful. She intuitively knew what it had taken us eight long weeks to fully understand.
I believe that my daughter’s astute observation on our walk that day was the moment I began to transition out of my stage of confusion and uncertainty. I no longer found myself wrestling with the question of whether or not her behavior was willful defiance, being done on purpose to get some sort of attention or reaction. I found myself settling into a new stage of the paradigm shift, involving more insight into how brains function differently, and how this impacts behavior. I came to appreciate the importance of accommodations, the realization that children thrive in an environment that fits who they are, and that they are set up for failure if they are placed in a poorly-matched environment.
This growing understanding has been confirmed over and over again through my review of research on the brain-behavior connection, and in the process of supporting other parents who have experienced positive transformation through this alternative way of seeing and parenting their child.
It’s been a completely unexpected journey, one that I never could have imagined before parenting my daughter who experiences the world so differently than most, but one that I now know is not unique to us. I wish I could say to every parent of a child with a neurobehavioral condition who is feeling hopeless, feeling like they might be surrounded by darkness, that with the right information and support, you absolutely have what it takes to do this. You and your sweet child (or children) can live a life that has many more ups than downs, one that contains an enormous amount of joy.
Yes, thinking Brain First is an approach that sometimes entails a steep learning curve, but it can take you and your family to wonderful places you might never have imagined possible. As Maya Angelou so eloquently suggested, “When you know better, you do better.” We didn’t know, back then, how to parent our daughter differently, but we do now.
And we can do better, because of it.
Eileen Devine works in Portland, OR as a therapist and coach supporting parents of children with special needs. She is also a consultant for families impacted by FASD, PANS/PANDAS and other neurobehavioral conditions through her private practice, working with families nationally and internationally. She lives with her husband and two amazing kids, one of whom happens to live with FASD. For more information, visit eileendevine.com.
