8 Things I Wish My School Knew About Me
Note from Eileen: I am not a neurodivergent individual; I experienced school as a neurotypical student. In this blog post, I'm not pretending that I understand what it's like to live each day with a brain-based difference. Instead, I am hoping to cultivate understanding based on what I have learned as a therapist and as a parent of a teen who lives with a significant brain difference, as it relates to the school environment. We’re fortunate that we have neuroscience research that informs us about the brain-behavior connection, how challenging behaviors are symptoms of a brain that works differently, and how those symptoms are a clear indication that accommodations are needed. While this post won’t delve into the science behind the brain-first model of parenting, you can learn more about it here and here.
Dear Teachers and Other School Staff,
It’s important for me to share with you that I live with an invisible, brain-based condition that makes seemingly easy cognitive tasks difficult for me. These brain-based conditions have different names like ADHD, sensory processing disorder, PANS/PANDAS, FASD and more (hundreds more!), but the exact name actually isn’t the most important thing to know about my differences. What’s important to realize is that because my brain works differently, there are everyday expectations that I have a hard time meeting, and the thing I need the most, in order to be successful in my school, is effective and thoughtful accommodation.
My hope is that I can share with you some of the most common challenges I experience each day, so you know that I am doing the best I can, and have a better sense of how to help me be successful..
I need more time than my classmates — as much as 10 additional seconds — to process what’s happening around me (especially auditory processing). In a classroom setting, this might arise when a teacher is asking questions about the lesson to multiple students, with a steady flow of ideas and conversations happening between multiple people. When I am called upon, I might freeze or shut down or start to get silly, because I have not been able to keep up with the conversation until that point, and feel pressure from the teacher to answer. Sometimes, I might appear to be disinterested, or simply refusing to participate, when in reality I haven't had enough time to process what the teacher has said or asked, and this makes me embarrassed and anxious.
I want to do the right thing, but I can only hold one (maybe two) directions in my head at one time. This is because a key aspect of my brain-based difference is that learning and remembering does not come easily to me. If you give me three steps, I can sometimes do the first step, but then I might get lost and overwhelmed and simply can’t remember what I’m supposed to be doing next. It might appear like I don’t want to listen, when in reality, it’s about not being able to hold onto directions or steps without frequent reminders, or having it written down for me.
I will need to be re-taught or reminded about the simplest rules and routines — likely, many more times than my classmates. This is because my brain cannot hold onto information without significant repetition. Visual reminders, along with understanding adults who have accepted the need to re-teach me, help me immensely.
I will have on and off days throughout the school year. Yes, I know we all have on and off days, but my “off” days can be really challenging. Things I knew a few days earlier might now escape me. I might become easily upset and emotional over minor frustrations. I might show signs of being more anxious or overwhelmed. It helps me to be more successful on these “off” days when the adults around me can see me as having a hard time, not trying to give everyone else a hard time.
Sometimes my brain gets stuck. This might mean I ask the same question over and over. It might mean I am extra chatty, talking in circles, and cannot stay quiet in class despite redirection, consequences, or threats of punishment. It may mean that I get “stuck” in a behavioral loop, where I keep doing the same thing over and over again, despite being told repeatedly to stop. Please know that when my brain gets stuck, I need your help to get unstuck. Often times, this means moving my body to help my brain break free again. This is also why, one of the worst things you can do is take away my recess. Movement is extremely beneficial for me.
One thing that is very challenging for me, because of the way my brain works, is getting started or engaged in a task. It can appear as though I just don’t want to do the work, or I'm disinterested, when in reality I don’t know where or how to start (especially if the task itself is overwhelming to me). Having a teacher take the time to help me get started, beyond simply verbal directions, makes all the difference in me having a successful day.
Because my brain works differently, it is really hard for me to calm down by myself. If I'm sent into the hallway or into another room, where I'm all alone and told to “calm down,” it’s hard, if not impossible for me to do this on my own. What I need to calm down is a change of environment with the company of a trusted and calm adult who can help me feel safe and calm again. This is called co-regulation, and can be incredibly helpful to me.
The last, and perhaps most important thing I want you to know, is that I truly would do well if I could. My brain has to work harder — and differently — than any of my classmates just to survive my day, so I run out of brain fuel quickly. Even exciting and fun things can be exhausting and overwhelming to my brain. I don’t want to be in trouble all the time. I just want to be like everyone else. Your belief in me will help me learn to be in school, so I can then learn in school.
If you'd like to dive deeper into any or all of these eight areas, you might be interested in my FREE Brain First Parenting Podcast Mini-series. The podcast consists of six concise-but-packed episodes, providing an overview of the Brain First Parenting model and framework. Listen to it whenever you want, on the platform of your choice!
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.