How One Child's Unique Needs is Leading to a New Educational Model for All
Educational reformers like Todd Rose and Robin Lake argue that we must design education not for the “average” kids in the middle of the bell curve but for those who sit on its tail edges. Doing so generates a system of flexibility and individualization that allows us to better meet all our children’s needs.
For some of us, this isn’t a choice but a necessity.
Cajal Academy's unique and highly-individualized union between the science of how kids learn and the science of how their bodies work came out of the needs of our founder's experiences (herself and for both her children) with the connective tissue disorder, Ehlers-Danlos Syndrome. EDS is a difference in the material that makes up (& holds together) much of the human body, and its symptoms manifest differently from person to person and day to day, and at different stages of life. Common in Cheryl and her kids’ own experiences are chronic pain, fatigue, G/I issues, hyperlax (& painful) joints, immune instability, nueropathy and an insufficient neuro-vascular system that can lead you dizzy if you get up too fast, or feeling "brain fog" if you sit still too long. EDS’s “signatures” can be so different from one person to the next that it is commonly symbolized by a zebra: no two share the same stripes.
Needless to say, these invisible and ever-shifting forces significantly complicate the task of learning. In fact, it became clear that this constantly-shifting and seemingly arbitrary input within the body was having cognitive impacts on Cheryl’s kids as well, as the level of disorganization in their bodies interfered with the ability to structure information in order to encode it for later recall. And, for a child whose body is meaningfully different from those around them, without the ability to self-monitor, self-regulate and self-advocate for those differences, adults are at a loss in how to understand—let alone support—their needs.
Over a number of years, Cheryl and her kids' team of occupational and physical therapists developed a set of strategies, tools and even games that her kids could use to monitor and proactively manage elements of their conditions through movement, sensory strategies and communication tools. Yet whenever they tried to help her younger son bring these tools into educational settings with him, they found that he didn’t have the support he needed to apply them. Often, he understood human physiology better than his teachers did. Quickly it became clear that there wasn’t even a shared language with which to discuss how medically typical children’s bodies and minds worked, making it impossible to discuss the ways in which his system differed.
This got Cheryl and Heather Edwards, the OT who had supported her kids for years, thinking: what if they created an environment that was based at the outset not on the Industrial Revolution model of children-in-chairs but based instead on 21st century science illuminating the workings of the brain, the body and the ways that each informs the other? What if this science was taught to all children--so they were each in a position to understand their own body needs, and to leverage their learning outcomes through those same movement and sensory-based techniques? What would this mean for the way that communities of learners functioned as a whole, and how would it change the compassion and inclusion extended to those children whose physiological or learning needs differed?
Cajal Academy’s program was born from this starting point. They began with two core assumptions. First, that children can and should be taught to consciously optimize the interactions between the two things they all have in common: a physical body and a trainable brain. And second, that doing so requires a framework that is as individualized as the children themselves, within shared social experiences.
Launching an initial pilot program with Cheryl’s highly-complex EDS child put these principles to the test. Already, Heather had taught him to monitor shifts in his own neurochemistry due to sensory and immunological dysregulation and to manage them through the strategic use of particular types of sensory input. Together, they extended this into strategies through which he is now learning to monitor shifts in his own blood pressure, proactively communicating and managing his neurovascular dysregulation through communication and movement tools--at just eight years old. Applying this science-first approach to the data they’d accrued on all aspects of his neuropsychological and learning profile, they broke academic content apart into individual cognitive tasks, targeting his weaker skills with OT-derived games that build brain capacity through the principles of neuroplasticity while presenting new content through the skills at which he already excelled—allowing him him to experience his own gifts for the first time.
The result is a first-of-its-kind educational framework designed to meet the needs of all kids—including the ones who have complex learning profiles, medical needs like EDS and other twice exceptional learners. The approach departs from traditional educational models in a number of meaningful ways, including:
coaching, integrated directly into the classroom, in personalized strategies to self-monitor, self-regulate and self-advocate for such physical needs as dysautonomia, POTS, chronic fatigue, joint precautions, sensory integration challenges--along with learning disabilities like structuring information, dyslexia, dyscalculia and ADHD;
individualized programs to deliver content through their strongest cognitive skills while strategically targeting any learning disabilities, physio challenges and other challenge areas that hold them back;
OT & PT-supported "body-informed" instruction to leverage the body as a learning tool while maintaining body regulation and controlling for fatigue, muscle cramping, sensory processing challenges, joint precautions and other musculoskelatal complications; and
an informed peer group, empowered with the science behind how their own bodies influence their life-lived experiences and with tools they can use to optimize their own learning, social and emotional outcomes.
Of course, not all kids will need to monitor or manage their bodies at the sophisticated level required for kids with invisible conditions like EDS--but all kids can better take agency over their life-lived experiences when they understand the myriad ways in which their bodies inform their learning, social and emotional outcomes, and what they can do to influence those interactions. All kids perform more poorly academically, socially and emotionally when they are tired, ill or fidgety. And all kids can increase their organization of thought through basic movement strategies that increase organization within their bodies—to name but one example.
Moreover, it takes but a cursory scan of the news to see the downstream effects when we fail to teach children to understand and care for their physical and emotional health, or even just the basics of proper posture to sustain the long seated hours of our knowledge economy. The implications of this approach, at a societal level, for long-term health outcomes, economic productivity and quality of life are exciting. And in the short term, it is exciting to see an educational model emerge that lets EDS kids be, well, just kids, together with everybody else.
