A school made by an EDS family, to empower medically-complex kids
Cajal Academy is the world’s first school designed to empower kids with Ehlers-Danlos Syndrome and other hereditary connective tissue disorders to thrive independently
A recent report by the National Academies of Science, commissioned by the Social Security Administration, finds that hereditary connective tissue disorders like Ehlers-Danlos Syndrome and Marfans can impact children so greatly as to significantly impair their ability to engage in school — leading some 30% to end up on homebound instruction. Where these conditions were once understood as being a musculoskeletal condition that affected the joints, it recognizes that these conditions throw off a kaleidoscope of shifting physiological impacts across multiple body symptoms, with neuropsychiatric affects like anxiety and depression colliding with cognitive impacts like brain fog, language processing problems and more. Worse, it finds that the stressors and demands of school itself can exacerbate these symptoms, further undermining kids’ access to the core skills they need for learning, and to the educational environment itself.
Cajal Academy was founded by an EDS mom, former litigator and social entrepreneur who was determined to create an educational environment free from the triggers that make these conditions worse, and where kids like her own could receive the therapeutic services and specialized instruction they need to learn how to manage all that their complex medical conditions can throw off—so it doesn’t get to stand in the way of who they want to be.
We are proud to provide the world’s first program that is specifically designed to empower children who have connective tissue disorders such as Ehlers-Danlos Syndrome (“EDS”) and its common comorbidities, including mast cell activation syndrome, dysautonomia, POTS, hypersensitized central nervous system and more. Our “Zebras Program” sits at the heart of a school for intellectually-gifted and twice exceptional kids. Supporting these children’s needs is baked into the DNA of our school. Our goal is to give children the knowledge they need to understand their own very specific profiles and chart their own path, so they can thrive independently in the future mainstream academic and professional settings of their own choice.
We re-designed school, based on scientific guidance about what kids with connective tissue disorders need
“Physical and mental demands related to school or work may precipitate or exacerbate secondary impairments, perhaps further limiting activities and restricting participation...”
There is no cure for heritable connective tissue disorders. Instead, children must learn how to recognize and avoid their triggers, and how to manage their symptoms as they arise. But with multiple body systems overlapping at once, this can get pretty complicated.
We set aside all assumptions about “how schools work” and created a new approach that minimizes those things that are recognized as exacerbating HDCT symptoms while maximizing those things that interrupt these cycles. And we do this for all our students, so noone feels “different,” and everyone benefits.
Here are some of the ways our program is uniquely-suited to the needs of kids with HDCTs:
We integrate movement into the classroom to maintain HDCT kids’ access to learning
Sitting still for long periods of time increases painful muscle cramping and fatigue, while increasing brain fog, dizziness and fatigue by allowing blood to pool in the feet.
Movement, tailored to each child’s physio profile, is integrated throughout the day & used as a powerful learning modality, keeping HDCT kids’ systems operating smoothly. We do this through our OT-designed Body-Informed Learning: a pedagogy applying the neuroscientific principle of “embodied cognition” to accelerate academic learning by pairing it with motor and sensory input.
We designed our facility to reduce common triggers for HDCT kids
Our intimate, ADA-compliant space was specifically-selected to avoid the stairs, long walks between classes, heavy backpacks and crowded hallways that add to the baseline fatigue of attending most traditional school settings.
In fact, we turned the design of our school over to our OT to create a space optimized for all kids’ learning, with accommodative seating and slant boards to care for hypermobile joints and low visual and auditory stimuli to reduce the demands on hypersensitized central nervous systems.
We have an integrated, multi-disciplinary team of educators & therapists trained in how to support HDCT kids
Growing up with a symptomatic connective tissue disorder means learning how to troubleshoot around basic biological functions that most kids and adults never have to think about—and therefore are unable to help you do so. Worse, as the National Academies of Science report recognizes, the range and severity of symptoms HDCT kids experience often leads educators, school nurses and even physicians to dismiss their needs as psychological disorders—when in fact they are the result of physiological processes that exceed the knowledge or expertise of the caregiver in question.
It’s hard to overestimate how psychologically damaging it can be for a child experiencing real pain, fatigue, G/I distress, dizziness and more to have it dismissed as “all in your head” or even, “task avoidance.” At Cajal Academy, all staff, including our teachers, administrators and licensed therapists, are trained in how to recognize the signs and symptoms of each child’s medical events, and in how to listen and respond to body complaints that don’t match to their own experiences in order to help kids develop their self-advocacy skills—not shut down their reporting. This is supported by a culture that recognizes typical physiological functioning as a privilege, and learning to manage bodies that don’t play by these rules as an essential life skill.
We embed scientific & clinical expertise within a school
Cajal Academy was co-founded by a licensed occupational therapist, and our team was specifically-selected for their expertise in appreciating the impacts of hidden medical events on learning and social-emotional availability.
Our Director of Programs is Steven Mattis, PhD, ABPP: an internationally-recognized neuropsychologist with expertise in which hidden neurophysiological events can impact a child’s cognitive, social and emotional regulation, and the impact of chronic pain, fatigue and the trauma that can be caused by ongoing medical events on a child’s social-emotional development.
Specialized Instruction
We provide specialized instruction in how to monitor and manage complex HDCT symptoms
Many school districts readily offer 504 plans to reduce the negative effects of school-related functions and activities on kids with EDS and other connective tissue disorders — but the National Academies of Sciences Consensus Report (which was commissioned by the Social Security Administration) says that patients with these conditions need specialized instruction in how to monitor and manage their complex medical conditions. These include, “education about posture, body mechanics, ergonomics, joint protection, trigger point management, pain self-management (pain neuroscience, physiological quieting, biofeedback, self-care), POTS self-care, MCAS self-care.”
This instruction is delivered by our licensed physical and occupational therapists. Additional expertise in how to identify the learning impacts of symptoms as they arise is provided by our neuropsychologist, based on his extensive clinical and research expertise with kids having autonomic nervous system regulatory challenges. This is supported by coaching in how to ‘parse’ out overlapping symptoms and select a strategy to help reverse them. Meanwhile, all classroom teachers are cross-trained in how to recognize symptoms of POTS, pain, brain fog and more, and appropriate ways to prompt students to make the adjustments they need to resume learning.
At Cajal, we customize this instruction and support for each child—because we know how variable connective tissue disorders can be. In general, these include:
We train kids in how to maintain a “Safe Body” while doing the things they love
Having hyperlax ligaments leads to what are for many daily joint subluxations and a heightened risk of long-term injury—while robbing the brain of the consistent proprioceptive input it needs to avoid these risks.
Our students receive OT- and PT-guided instruction in “Safe Body” techniques they can use across settings to protect and align hypermobile joints while doing the things they love. Services improving proprioception are provided in-house, following manual PT alignments, to avoid re-entrenching incorrect body positioning.
We give kids a toolbox they can use to identify their triggers — and learn to control their responses
Kids with HDCTs can have myriad hidden physiological events happening inside them that can drive pain, fatigue — or neurochemical releases that impair attention, mood regulation and more. All that on top of being kids, with all the social-emotional challenges and learning that brings.
We built on the “trauma-informed schools” movement to give these kids a unified toolbox they can use to identify their triggers (from mast cell reactions to playground interactions), understand their emotional and physiological responses thereto, and then learn over time how to control their outward responses so that they — not their bodies — drive who they want to be and how they want to interact with the world around them.
We give all our students academic instruction in the science behind their unique body functioning and needs
We teach kids the science behind their unique profiles, giving them the intellectual understandings they need to gain agency over their reactions. This instruction happens through our science class and in 1 on 1 sessions with our licensed therapists — and through Human 101: a proprietary curriculum we have developed to tie these two together. This multi-disciplinary approach integrates scientific understandings from across psychology, neuropsychology, physiology and the neuro-anatomy of human interactions to give kids real world “life hacks” they can use to optimize their own learning, social and emotional well-being.
“Children with chronic pain may experience significant adverse effects on participation in academic, athletic, and social activities... Pain can interfere with all types of physical activities that may be involved in work or school, including such sedentary activities as sitting at a desk, writing, or working on a computer. Chronic pain also has an effect on cognitive functioning, including such areas as long-term memory, selective attention, processing speed, and executive functioning”
Cajal Parent Testimonials
Direct Services
We integrate expert, multi-disciplinary therapeutic services into the school day to maximize learning, reduce symptoms — and give them time after school to be kids
“High-quality care for individuals with HDCTs relies on effective coordination among a team of providers across a broad range of disciplines.”
All students receive a balanced mix of services from licensed therapists who have specific expertise in the safety precautions, therapeutic techniques and life-lived experiences of kids with HDCTs.
Social-Emotional Services
Counseling with a PhD-level psychologist experienced supporting kids with the anxiety, depression & social isolation that are common to growing up with HDCTs
Occupational Therapy
Joint proprioception, sensory integration, fine and gross motor coordination and how to do what you love while caring for your body’s unique needs
Physical Therapy
Cranial-sacral therapy to realign joints and improve autonomic functions, combined with strengthening exercises to stabilize hypermobile joints to reduce pain and improve neurological functioning
Community
We offer HDCT kids the rare gift of learning alongside other kids like themselves, wtihin a broader community of bright and gifted kids that “get it”
Growing up with a symptomatic HDCT can be incredibly socially-isolating, and can leave you wondering if you’re “the only one.” Having the opportunity to learn together with other kids who share your unique medical profile can be transformative for these kids, and builds the emotional resilience they need to withstand what their bodies throw their way.
But that doesn’t mean going into a “bubble.” Our Zebras Program was established as a “school within a school,” with a broader cohort of bright and gifted kids who have special education needs. We teach all our students the neurophysiology they need to understand their own unique profiles and those of their peers, fostering a culture of scientifically-informed empathy. Along the way, this provides organic opportunities for medically-complex kids to develop a comfort level and vocabulary to communicate and advocate for their differences with others who do not share their life-lived experiences.
Academics
We integrate all of this within standards-based academics made interesting enough to be worth the effort that school requires from HDCT kids
Our academic program is an important part of our commitment to supporting children who have complex medical needs not as “patients” but as scholars, athletes, artists and future thought leaders. As a former litigator with a top 5 U.S. law firm, our Head of School models for the children that having complex medical needs like the ones that Ehlers-Danlos Syndrome can create doesn’t have to stand in the way of going to a competitive college or graduate school, or from achieving your dreams. We are passionate that no student should have to choose between intellectually-stimulating academic programs to prepare them for the futures of their choice and the therapeutic supports they need to learn how to thrive independently once they get there—whatever challenges their bodies may throw their way.
All our students, regardless of profile, participate in our standards-based, project-based learning curriculum, differentiated for their ability levels and learning profiles. Key highlights include:
Inquiry-based, collaborative project-based learning to give academic topics relevance and purpose for kids who have enough on their plate just managing their own bodies
Highly-individualized programs differentiated 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-designed, kinesthetic curriculum that leverages the body as a powerful learning modality, while maintaining body regulation and controlling for fatigue, muscle cramping, sensory processing challenges, joint precautions and other musculoskelatal complications
Remote instruction options when fatigue, immunological instability and other chronic conditions interfere with their ability to engage on a consistent academic schedule, integrated into our broader cohort through in-classroom video conferencing, flexible scheduling and video recorded class sessions