From Darkness to Illumination

I remember, quite vividly, the time that I now refer to as the “Dark Ages.” While it certainly wasn’t constant “darkness” in the way you might imagine, it was a time of frequent and intense waves of anxiety, stress, concern, sadness, grief, and confusion for me as a parent. As I look back now, the most critical piece to recognize about those so-called Dark Ages, and the impetus to label it as such, was the information I was missing on how to differently parent my daughter, “Miss M,” who has a diagnosis of Fetal Alcohol Syndrome (FAS). Because I did not grasp that the things she needed from me were completely different than what my “neurotypical” son needed, I tried harder and harder, doing the same things repeatedly, with relatively little success. As my concern for our daughter grew, my confidence in what we could do about it was quickly diminishing, because it seemed nothing worked.

Although we knew from a young age that Miss M was behind her peers in many ways, and that the FAS was the reason behind 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 be “normal.”

We were missing information that would lead us to believe anything different.

With this positive, “can do” attitude fueling us and our parenting approach, we decided to enroll Miss M, at the age of 4, in 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 addition to our unconditional love, attention and patience), we figured she 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.

The Dark Ages are one of the developmental stages of “getting it” (as described by Diane Malbin’s work), with “it” being an understanding of our child's disability or illness as a brain-based condition, and achieving the paradigm shift from thinking of “brain” instead of “behavior.” During the first stage of this journey, affectionately termed “The Dark Ages,” 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 from 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 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 feeling increasingly hopeless.

During the time my husband and I were making school arrangements for Miss M, we knew 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— to name a few) was largely foreign to us.

Most school days, we’d get a morning call from the office notifying us that Miss M 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. She was running circles around the classroom or rolling on the carpet, when she was supposed to be sitting still. She was refusing to complete, or begin, 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 Miss M needed in order to be successful, given her brain-based disability.

Several weeks into this private school attempt, there was a particularly challenging day for Miss M 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 Miss M 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 worst and, as I see now, causing her to feel shame). Bribing her into good behavior had no effect. It seemed my words were worthless and nothing “motivated” her. So, we walked in silence.

After walking for a solid ten minutes, Miss M looked at me and said, “Mom, this place 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 Miss M’s astute observation on our walk that day was the moment I began to transition out of the Dark Ages and into the stages of Illumination. Stages involving more insight into how brains function differently, and how this impacts behavior; 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. My understanding continued to grow when I attended Diane Malbin’s FASCETS training later that same year, then solidified even further a few years later when I had the privilege of being mentored by Diane and becoming a FASCETS certified trainer.

It continues today, as I work one-on-one in my coaching and consultation practice with families impacted by a myriad of neurobehavioral conditions, when I have the privilege of hearing their stories and walking alongside them as they find their way out of their own darkness and into their own stages of illumination. It’s been a completely unexpected journey that I never could have imagined before Miss M, but one that I now know is not unique to us.

I wish I could say to every parent of a child with 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 Miss M differently, but we do now. And we can do better because of it. Equipped with this knowledge, we can look forward with hope and confidence, knowing that whatever the future brings— we’ve got this.

Eileen Devine, LCSW works as a coach and consultant with families all over the world impacted by neurobehavioral conditions through her private practice. She is also the creator of The Resilience Room, a membership community for parents of kids with brain-based differences. She lives in Portland, OR with her husband and two amazing kids, one who happens to live with FAS. For more information about Eileen and The Resilience Room, visit www.eileendevine.com.