The following testimonial was sent to us by the parent of two of our students who have the condition hypermobile Ehlers Danlos Syndrome: a complex disorder affecting the connective tissue that holds your body together that can affect everything from the way you stand and move, to the way your immune, nervous and gastrointestinal systems work, to the way you think and feel. 

I have twin girls who have both been recently diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS). Both girls began to experience more and more difficulty coping with a mainstream, school environment. Their health and mental wellbeing began to spiral downwards, and we went through some really difficult years! Once we got a diagnosis, their school allowed accommodations. Yet nothing much changed - they were still having to meet most of the day to day challenges of a regular school, which can trigger fatigue, mast cell and POTS flareups, and worse. We went through some really tough times. 

Then I heard about the Cajal Academy, created by Cheryl Viirand, a mom with hEDS. She came up with the idea because her kids also had this condition, and also struggled with a regular school environment. I had just spent years battling with school officials who were nice, but also completely unfamiliar with hEDS and the concept of complex medical conditions. Any time my kids had symptoms that were specific to their medical conditions (and thus that the school nurse couldn't explain, they were ready to assume  it was a psychological problem. 

So I was unprepared for what I found at Cajal. Instead of skepticism, they knew exactly what I was talking about, and not only that, they would go further and explain what was going on with our kids and why; and even further, explain what they could do at Cajal to address that problem; and further explain how they work to teach kids to understand their condition and how to maintain their health and keep from spiraling downhill (the usual depressing outcome for kids with hEDS). I felt heard and validated for the first time! Talking with Cheryl, the hEDS Mom who is the Head of School, is like crystal clear sunlight dissipating all the fog of nonsense imposed on us by well-meaning officials. She clearly understood all our struggles! 

We enrolled both girls in the summer program at Cajal last year, and they absolutely loved it. It was wonderful to see how they blossomed. The twin with the most serious health issues - who had missed 80% of 7th grade and had spent the previous 7 months trying to survive a chronic abdominal pain that no doctor was able to help her with - was treated to cranial sacral therapy at Cajal: by the end of the 4 weeks, her abdominal pain had almost disappeared, and they were able to reverse spells of dizziness, headaches and fatigue that have always kept her out of school in real time–so she could go back to learning and being with her friends. She returned to the more energetic, curious person we used to know before she had spiraled down into poor health and chronic pain. She also regained most of her ability to walk and keep her balance, that she had lost as a result of proprioception problems. This was pretty impressive since no one we had taken her to so far had any idea how to help her. She also started being able to last the full school day without becoming overwhelmed with fatigue, and without developing any POTS or mast cell flareups. She also found the school days at Cajal to be very stimulating and engaging, and couldn't wait to go back each day. She began to improve in many ways. But unfortunately, due to circumstances outside our control, she had to return to the public school in our district for 8th grade. She is back to having a dismal school attendance record, and any attempts to make it into school results, once again, in further fatigue, and POTS and mast cell episodes, despite all the accommodations the school has put in place to help her with her medical condition. We are currently, desperately working to get her the help she needs.

Our other twin was lucky enough to be able to attend Cajal for the current academic year for 8th grade. At her old school, last year, we had to battle with her to get her to go to school each morning and to do her homework at night. She was always exhausted and had turned into a pretty difficult kid, totally unlike her old self. She had brain fog and memory problems and was always begging to be allowed to stay home. Towards the end of that year, she was starting to develop POTS symptoms and her school attendance started to deteriorate. Her hypermobile joints meant that she was constantly spraining her ankles, and as she grew, she began to fall a lot and break bones. When she started at Cajal, they immediately set to work, training her how to maintain a safe body position and posture, as well as providing physical therapy at the school, to help her strengthen core body muscles. They knew immediately when to intervene so she would not develop fatigue or brain fog, and to minimize the likelihood of a POTS flareup. She feels listened to when she describes having pain in different parts of her body, and receives help to resolve the pain. She also finds the strategy the school uses to educate really bright kids like her, a really rewarding experience. Instruction combined with problem-based learning at Cajal really suits her. Instead of sitting in a hard-backed chair all day, listening to a teacher, at Cajal kids get to move about, problem solve, and work on things together. It is wonderful to see her thriving! Instead of all the fights to get her to school that we got last year, she is excited to go each and every day. She is really upset if the school is closed for the day, and she hates weekends and can't wait for Monday to come so she can go back to Cajal! Is this the kid I used to know?? She smiles all the time now, too. And even though we live so far away from Cajal that she has to travel 2 hours there and 2 hours back every day, she has not complained once! 

This school is a God send! Kids with hEDS are usually stuck, struggling to cope with the ways their bodies interfere with school. At Cajal, they teach kids how to get their life back, and how to live as full a life as possible, despite their diagnosis. We are so happy we found out about Cajal!