It’s that time of year again—back-to-school sales at all the stores, school emails and supply-lists arriving in our in-boxes, fresh questions about new teachers and new classrooms. The summer break is winding down for many of us, which for some brings relief at the idea of returning to more structured days (with perhaps some respite for parents and other caregivers). For others, this transition brings the dread and stress of educating a new teacher on our child’s unique way of being in the world, bracing for what seems to be inevitable challenges inherent in our child’s experience of school.
Wherever you fall on that spectrum between relief and dread, there are things you can do as a parent to begin building a new foundation of collaboration with your child's teacher, with the goal of setting everyone up for a successful school year.
To Disclose or Not to Disclose
Many children with brain differences (FASD, PANS/PANDAS, trauma-induced, ADHD, etc.) might outwardly appear to be “neurotypical,” causing their brain-based disability and related challenges to go unnoticed, and therefore unrecognized, by teachers. This lack of recognition then leads to symptoms of their disability— the challenging behaviors related to a lack of understanding— to be interpreted as disrespect, defiance, lack of motivation or laziness.
Parents with whom I routinely work struggle with the question of when to disclose to others in their child’s life the fact that their child has a brain-based disability which makes seemingly simple tasks incredibly difficult and draining each day. Parents are worried about the impact this disclosure might have on their child, that the stigma accompanying these various diagnoses will cause negative ramifications. The stigma is real, and yet with this reality in mind, my challenge to a parent is always this:
What will the impact on your child be if you choose not to disclose?
How will you advocate for them?
Without disclosing, how will your child access the accommodations they so rightfully deserve, based on their brain-based, physical disability?
Relationship comes from understanding. If your child is not fully understood by those who interact with them each day, the ability for your child to having meaningful and positive relationships with the school-based adults in their life is greatly diminished. I always advise pro-active planning (which in this case means early disclosure) vs. waiting for a problem to occur, which can force the disclosure under less-than-ideal circumstances.
Getting Clear on Brain Tasks
When was the last time you gave serious consideration to exactly which cognitive skills or brain tasks are especially difficult for your child? We often can pinpoint the situation or recall the event where it occurred, but what brain task was involved that sent your child into a meltdown or a fit of rage?
Is it that your child is significantly delayed in their executive functioning and unable to transition without substantial support? Do they get “stuck” in verbal or behavioral loops where they cannot get “unstuck” without assistance from an adult? Are they unable to initiate an activity independently, even one that you know they love?
Is it that they do not have cognitive flexibility, so everything is black and white, yes or no, now or never?
Do they have difficulty with processing sensory input? If so, what types of sensory input are especially challenging (noise, bright lights, crowded spaces, smells)?
Does your child struggle with social and emotional skills, meaning they are much younger socially and might still be learning what it means to think of others, empathize, share, and compromise?
What do you know about how their brain processes verbal communication? How would you describe their memory and recall challenges?
As parents who daily experience challenging situations with our child, we usually have no difficulty articulating what event or situation "set our child off" or caused them great distress. But if we can take a step back and link it with brain function, we gain an essential piece of the puzzle in terms of how to understand our child in all environments and situations.
Taking the step back, making the list of brain tasks and then translating them for others—teachers, para-educators, administrators, bus drivers— is essential for the understanding of those professionals, and their ability to then be pro-active in their approach with your child.
The Short but Comprehensive Summary - Bringing It All Together
I clearly remember my own first steps up the steep learning curve of trying to understand an individual with brain differences from a neurobehavioral perspective. It was challenging. I needed reminders and re-teaching. I needed to be gentle with myself when I failed to parent differently, and needed support in doing it better the next time around.
Teachers are on their own steep learning curve with this approach. It’s often not taught in education classes or offered in professional development sessions, leaving educators unprepared or ill-equipped to see children from this lens. There are ways we can help bring the information together for teachers in a concise, but comprehensive way, to help them understand what it means for our child to struggle with those identified brain tasks.
I suggest a succinct summary identifying the brain tasks that present the most challenges, along with a translation of what this might look like in the classroom and what works to help your child be understood and successful.
For example, for a 9 year old child who is experiencing dysmaturity and might actually be closer to age 4 developmentally, we might write:
Johnny’s social behavior is frequently much younger than his chronological age (as much as 4-5 years younger). Because of this social and emotional developmental gap, he can sometimes be seen as irresponsible or 'acting like a baby,' when in reality he is much younger developmentally. Remembering that he’ll benefit (and be safest) when understood as being a younger age than he appears, will help prevent development of frustration, personalization and anxiety for Johnny.
For LaQuisha, the 11-year-old in fifth grade:
LaQuisha is a very good listener, but she listens slowly (think: ten-second-child in a one -second-world). She will often say “I don’t know,” or “What?” because she cannot maintain or track the typical flow of classroom conversation. Slowing down and giving her space between sentences works for her. Giving her prompting questions or other visual cues before the instruction or classroom discussion begins will allow her to participate more fully in what is being discussed.
For Miranda, who is 13 and in middle school:
Miranda struggles with memory and recall, which makes changing classrooms throughout the day— each with its own teacher and differing set of rules and expectations— overwhelming for her to manage. She will benefit from visual cues and reminders from each teacher about those rules or expectations, which she can keep at the front of each section in her binder for that particular class.
For Omar, who is a 16-year-old in high school:
Omar has significant challenges related to executive functioning as a result of his brain-based disability. One of the ways you will see this in the classroom is when he is unable to initiate a task on his own (freezes up or gets stuck) and he may need additional prompting and support to get into the assignment at hand. He also experiences difficulty forming links, such as hearing instructions and then transitioning into doing the expected task (hearing into doing), seeing instructions for a writing assignment on the board and then translating that into writing on a paper (seeing into writing), formulating his thoughts and then verbalizing them (thinking into talking). He will experience success in your classroom if it is understood he needs more time and support in this area.
Finally, it is important to always include—and perhaps lead with—a section outlining a child’s strengths, suggesting how a teacher will find the most success in connecting with your child by building on those identified strengths.
From the Flipside – Tips from a Teacher
Many of these ideas are formulated from the perspective of a parent preparing for a child to return to school, but what about the teacher’s perspective? What suggestions would a thoughtful, experienced special educator have for parents and children about to shift into back-to-school mode?
Kelly Rulon is a teacher I’ve come to know through her work with our daughter. She's been teaching special education for seven years, working across multiple schools and districts. She’s a strong believer in research-based systems and instruction. In her experience, with those in place, every child can be educated in their neighborhood school, without restrictive placements.
Here’s what she had to say, from a teacher’s perspective:
I know that transitioning back to school can be a time of great anxiety, both for parents and kids. A little preparation can go a long way. Here are a few things that can help your student get emotionally ready to return to the routine of school:
Set aside time for an intentional conversation about the return to school. Ask your child what they are excited about for the year, as well as what might be causing feelings of nervousness. It's a wonderful opportunity for you to connect with them. As a teacher, I love hearing about these things too! It really gives everyone the chance to begin the year with a strengths-based approach, as well as an idea of potential struggles. Knowing about these feelings early on helps to get folks on the same page, and to get some proactive strategies in place.
The looser, less-structured routines and schedules of summer can be fun, but moving abruptly from that to school day schedules can be hard for kids. Helping your child gradually get back into a routine, be it bedtime or wake-up time, before school actually starts, will help with that exhausting transition back to school. (I know I'm asleep before my head hits the pillow those first few weeks back!)
I always invite my students to come for a short visit to the school during the week of in-service, before school begins. It's a busy time for teachers as we're prepping away for Day 1, but a short, informal visit helps me establish positive, low-stakes contact with students and families. This may not be the case for all teachers— and I have many colleagues who have wonderful family relationships without this meeting— but it's worth an ask if you think your child could benefit from a preview.
Additional Resources and Ideas to Consider
Diane Malbin’s book, “Trying Differently Rather Than Harder,” is an easy-to-read resource on the neurobehavioral approach. Although specific to FASD, the information applies to other neurobehavioral challenges. Buying your teacher a copy of the book and highlighting sections that are particularly reflective of your child is a wonderful way to expand understanding of your child. You can purchase a copy by contacting FASCETS directly.
Nate Sheets of Oregon Behavioral Consultation has an informative video for teachers on how to understand children with FASD and other neurobehavioral conditions. Short videos are often a straightforward way to share information with folks who are more receptive to this means of communication, versus reading a written document. If you do send this video to a teacher or other school professional, I’d still advise including a brief narrative about which of his six points are most applicable to your child.
As Kelly suggests above, before school begins, but when teachers have returned to prepare their classrooms, contact the school and request a 30-minute introductory meeting with the teacher(s). Use this as an opportunity to set the stage for collaboration and provide the teacher(s) with the concise-but-comprehensive write-up you’ve thoughtfully prepared. This is not the meeting to go into your child’s extensive history or to detail their previous challenges in school. Keep it short and positive, making it clear that you’re there to be a source of support in how to work with your child. If you know your child has a “honeymoon” stage at the beginning of the year, be upfront about that, so the teacher is not blindsided by it. If you know your child typically has a rough transition back, but then settles into the routine after a certain amount of time, let the teacher(s) know this, too, and suggest ways you can work together to support your child through the anticipated rough patch.
Transitions are hard, and from my experience in working with parents who have children with brain-based differences, the back-to-school transition is often one of the hardest. My final suggestion is for you, as the parent, to make your own plan, focused on what you will do to take care of yourself as you gear up to support your child through this potentially intense period. Rally the troops you have around you to help buffer some of the stress. Be clear with those closest to you about what you need during this period to make it through without burning out.
If you have a thoughtful, well-considered plan in place for you and your child, if you’re positive, clear, supportive and realistic with your child’s teacher(s), and if you’re able to place your child and their needs at the center of the conversation, the transition back to school doesn’t have to be simply a rewind of previously challenging transitions.
Interested in learning more about how to identify the brain tasks your child has difficulty with or about the work Eileen does with parents and parenting with a neurobehavioral approach? Visit eileendevine.com and reach out to her directly. She’d love to hear from you.
Eileen Devine, LCSW is a parent coach and consultant for families all over the world impacted by neurobehavioral conditions. She is also the founder of The Resilience Room, a close-knit membership community for parents of kids with neurobehavioral challenges. She lives with her husband and two amazing kids, one of whom happens to live with FAS. For more information, visit eileendevine.com.