Dear Family Member: A Letter I Hope You Read

Dear Family Member,

Thank you for taking the time to read this letter. The mere fact that you’re reading this tells me that you’re open to learning more about the child in your family who has a brain-based difference, and to understanding why their parent — your family member — supports their child the way they do. Believe me when I say that your openness means the world to the person who gave this letter to you.

A little background

I am a therapist who provides support to parents working incredibly hard to parent a child with brain-based differences and challenging behavioral symptoms. I am also the parent of a teenager with a serious neurobehavioral condition (Fetal Alcohol Spectrum Disorder). One of the things I hear from parents all the time is that they wish they felt more confident and competent in explaining all that they are learning about their child’s unique brain with YOU, their family members. That’s why I wrote this letter from them — to you — to help those parents articulate the experience of parenting their unique child to those who are closest to them.

First, I'm going to share a short, essential note about the science behind brain-first parenting and accommodations, and then eight things parents always tell me they wish their family members knew about their children. Throughout, you'll find underlined links to additional reading for deeper context.

A quick look at the science

I don’t want to spend too much time down in the weeds of the neuroscience research, but I do think it’s important to briefly touch on what the science tells us regarding the brain and behaviors, because this information is essential to understanding kids who have brains that work differently. The parenting approach I teach, based on the way a child’s brain works, isn’t something someone simply made up one day — it truly emerged from science that considers the brain, behaviors, and how the two are connected.

We know, based on research, that the brain and behaviors are always connected. The two can never be separated. So, what does this mean for a child who has a brain-based condition like (but certainly not limited to) FASD, Autism, ADHD, PANS/PANDAS or a history of complex trauma? It simply means that because their brain works differently — due to adverse events, toxic stress, illness or genetics — we can expect to see this change in brain function and structure reflected through their behaviors.

Behaviors are the symptoms of their brain-based difference.

Behavioral symptoms provide us with insight, like a window, into exactly how a child’s brain works differently. For example, what if a child’s brain works differently in a way that results in them having slower auditory processing and needing 10 additional seconds to process what you’ve said, or what you've asked them to do? We’d see this difference reflected through their behaviors. It may look as though they are not listening, but it’s actually a “brain thing.” What if — again, as the result of a difference in brain functioning — they struggle with learning and memory? So, they can do one thing at a time, but cannot follow the 2-3 step directions you gave them? Yup — you guessed it, we’d see this difference in their cognitive skills expressed through behaviors. They might be “easily” frustrated, “seemingly” distracted, or “apparently” disobedient… when, in fact, those behaviors are symptoms of a brain that functions differently. There are dozens of additional examples of how this can look for the child in your life — the one that you’re working to understand more fully.

Your openness means the world to the person who gave this letter to you.

There are, of course, other behavioral symptoms that exist on the more challenging end of the spectrum. Melting down, becoming aggressive, experiencing extreme anxiety or shutting down are just a few. These behaviors help us understand that the child is struggling. When a child with brain-differences (FASD, ADHD, PANS/PANDAS, autism, sensory processing disorder and more) has lagging cognitive skills that aren’t acknowledged by others, meaning the child is then up against expectations all day long that they simply cannot meet due to their brain working differently, this understandably leaves them feeling misunderstood, anxious, frustrated, and as though they can never do anything right. We see this poor fit between that child and their environment expressed through…you guessed it…their behaviors.

Where it gets tricky

Even though the science is clear on this brain/behavior connection, it doesn’t always translate smoothly to “real life,” especially when we adults were always taught to see all behavior as willful and intentional, not as symptoms of a brain-based difference. The majority of kids who have a brain-based difference look like every other child around them, what society might consider “neurotypical.” The glaring difference between these kids and their peers is the frequency and intensity of their challenging behaviors. This is what’s so tricky about parenting such a child — behaviors are frequently the only visible symptoms of their disability. But far too often, these kids aren’t seen as experiencing symptoms — and thus requiring additional understanding and support — they are seen, instead, as intentionally ruining everything, being defiant, lazy or selfish. This behavioral lens, that so much of society upholds, typically leads to more severe and harsher punishment. And here’s where the poor fit comes in again: that punishment doesn’t do anything to “correct” the behavior, because it’s completely missing the root cause.

Why your lens matters

If we can consider brain function, and keep in mind a child’s lagging cognitive skills when confronted with their challenging behaviors, it opens up a new set of possibilities on how to support them, and ultimately, how to help them be “less challenging.” This is where “parenting differently” comes into play — the kind of parenting your family member is working so hard to implement for their child. Just as we wouldn’t hesitate to provide accommodations to any child with a physical difference or disability, kids with brain-based differences require — and deserve — the same. It is the right and just thing to do, AND is the path towards fewer challenging behaviors.

What do accommodations look like in real life?

Accommodations will look different for each child, based on how that unique child’s brain works. This is what your family member has been working so hard to learn, understand, and implement in their parenting. Once they have a grasp of the specific skills in which their child is lagging, they can provide extra support to help their child be more successful. Curious to know more about what they’ve learned about accommodating their child? Ask your family member. They would love to be able to share more with you, I’m sure of that.

8 Things: What else your family member would love you to know

Now that you know the “why” behind your family member's conviction to parent their child differently than they would a neurotypical child, let me share some of the more specific feedback that the parents I’ve worked with “wish their family members knew.” This will, I hope, provide some ideas on how you can be a support to your family member as they parent their child through a brain-first lens.

I want you to truly understand and work to believe, alongside me, that if my child could do better, they would. This is foundational to the way I choose to parent.
I want you to understand dysmaturity, which refers to the gap between my child's social/emotional age and their actual chronological age. Individuals with brain-based differences struggle with cognitive skills that are needed to successfully navigate friendships and social situations, often being perceived as “younger”— as much as half their chronological age. This deficit in skills like compromising, thinking outside of themselves, showing empathy, being able to tolerate frustration, and other typical signs of “maturity,” are all symptoms of a brain that works differently. We hold expectations for our child, but they must be in-line with their developmental age, or they will be set up for failure and will never “learn.”
I need you to understand that traditional, time-honored parenting techniques such as time-outs, consequences, and other punishments and bribes don’t work for my child because these all require cognitive skills in which my child is likely lagging (impulse control, connecting the dots, ability to remember past experiences…to name a few). Because of this, I need to focus on other ways to teach my child right from wrong. You may not see me immediately addressing the behavior and/or whatever the thing is that happened, because this conversation has to be at a time when my child is calm (“regulated”) and able to listen in order to be able to learn. That is rarely, if ever, in the heat of the moment, or immediately after some “misbehavior” has taken place. Please trust me that addressing what’s happened, and teaching my child right from wrong, is a priority for me, and I am working with my child on this by circling back with them at a later time.
Accommodations may look like “giving in,” but they are actually what my child needs — and deserves — because of their lagging cognitive skills. For example, if my child has a difficult time regulating their emotions (which is an executive functioning skill), I am going to support them in working through their seemingly “unreasonable” and “out-of-nowhere” meltdown. Lecturing them and threatening punishment only makes things worse. Or, if my teenager cannot keep track of all their school work and assignments because of lagging executive functioning and learning/memory skills, I am going to provide additional support and reminders, which may look to others like I am “allowing them to be lazy.” If my child is of a social and emotional age where they are still working on being flexible, on thinking of others, and on compromising, I am going to support them in peer interactions more than you likely expect me to do, in ways that help build those skills. And I’ll do this instead of jumping to punishment and shaming. Providing them with needed accommodations may mean that when I begin to see brain fatigue and over-stimulation set in with my child (due to their sensitive nervous system and sensory integration challenges), I may leave the family get-together early, with a quick goodbye and exit, even if we’ve only been there a short time. Instead of making me feel guilty about this accommodation, it would mean the world to me if you called me later to check-in on me and my child. I was sad to have to leave early, too.
I am still learning what it means to parent my child through a brain-first lens (versus a behavioral one), but I would love the chance to share with you what I know so far. My child has lagging cognitive skills unique to them, and when you know this about them, it shifts the meaning behind their challenging behaviors. I want to share with you what gets in their way, and what they struggle with, so that you can begin to see them through this lens, too. My hope is that with this information, your experience will be similar to mine: more empathy and understanding for my child, instead of increased frustration.
I know you love us and, at times, are scared for us due to the intensity of my child’s behavioral symptoms. Please know that I appreciate your concern, but the greatest support you can provide me is compassion, empathy and listening without judgement, as hard as that might be.
I know that when you see my child “mind their manners” or “behave well” with some people, or in certain situations, but then fall apart with me or at home, it can look as though the behavior at home is intentional — that my child is choosing when and with whom to “misbehave.” I’ve come to learn that this is about something entirely different. My child’s brain is working harder than anyone else’s all day long: trying to keep up, stay in-line, follow directions, comply with expectations and get along with those around them. Because they want, so badly, to do well. These seemingly easy tasks, that you and I do without even thinking, are incredibly difficult for them because of the way their brain works. When there are no accommodations provided to them, extreme brain fatigue sets in. When their brain gets tired, they have a harder and harder time “holding it together.” This is why they might go to Auntie’s or Grandma’s house and “behave” (working so incredibly hard to do what’s expected), but then come home and lose it. And we almost always see this extreme fatigue expressed through challenging behaviors.
This parenting journey is like no other, and can be quite isolating at times, probably more than you realize. Even if you don’t fully understand, or you have doubts or questions, it means the world to me that you’re reading this. That you're engaging with this letter. Attempting to understand. Trying your best to learn about my experience and how best to support me and my child.

Interested in learning more about how your child’s unique brain works differently and what this means in terms of helping them experience fewer challenging behaviors? You can visit eileendevine.com to learn about the Brain First Parenting program and The Resilience Room membership community.

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.