Accepting There is Nothing Wrong with Needing a Plan C...
September 28, 2016
We thought we had everything in place with an IEP plan set up and ready to go. Meghan could do some classes at home and some at school. This would have allowed her to take care of her intermittent symptoms as needed. But when it came down to it, anxiety got the best of her. We did a practice run a few days before school started and I couldn't get her out of the car to meet with the school psychologist. Racing heart, difficulty breathing - becoming someone I didn't know again.
Why do those with POTS and other chronic illnesses suffer from anxiety? That's not an easy question to answer but relates to the overall dysfunction of the autonomic nervous system - the part of the nervous system that controls automatic functions. For most POTS patients other automatic areas are also affected including digestion, sleep, adrenaline release, fight or flight response, sweating, body temperature regulation, balancing of water/electrolytes, saliva/tear production, and urination - along with the typical malfunctions of blood pressure and heart rate regulation that POTS is known for.
The study Meghan is in has identified an auto-antibody believed to be interfering with adrenergic receptors in the body that tell blood vessels to constrict or the heart to beat faster based on chemicals such as adrenaline found in the blood stream. When her blood pressure does not change as it should when she stands or exercises, her body releases more adrenaline to compensate. And sometimes it does it for no particular reason. So the adrenergic receptors misbehave as the bad antibodies confuse the receptor as to the correct response. Instead of increasing blood pressure, the body feels anxious from a racing heart and a fight or flight response that has been incorrectly stimulated. Often times Meghan will tell me she feels scared or worried when outwardly there seems to be no reason for the response.
After the very stressful spring we had caused by the loss of balance issues from not enough folate, I knew we needed to come up with a solution that covered all of our bases. One bad cold or other unforeseen event could throw the whole plan into chaos again. Her doctors in the study stress the importance of keeping anxiety low as we continue to see improvements from the IVIG and try to get rid of the misbehaving auto-antibodies. Stress exacerbates symptoms and can quickly eliminate any progress we have painstakingly made. Stress is a major cause of symptom flares in many illnesses.
We started all online classes through our high school and things seemed good for almost 2 weeks. We talked with the school about Meghan's dream to swim D1 as she was picking out an additional course to take for the semester. This led to questions about transcripts and how her current online classes would appear - I knew the importance of transcripts when applying to colleges. Fortunately it was discovered early that the NCAA has many requirements governing high school classes for those looking to attend a D1 school. Who knew?! Most public high schools already meet these requirements so it falls under the radar to parents and students who have never considered home school before as an option. We are very fortunate to have learned this early - before a semester or even more had passed. The classes Meghan had started through the high school were considered recovery and counted towards normal graduation but not towards the requirements of attending a D1 university. We quickly switched gears and started our search for online classes that were approved by the NCAA.
Many colleges - such as the University of Nebraska, University of Indiana, New York and others, have online high school programs that are approved by the NCAA. And after some online reading, reviews, and home school rankings, we settled on the University of Nebraska High School. She can complete semesters ahead of time or even take University of Nebraska college courses along with her high school courses if she chooses. The top three reasons for students that do online home school include religion, acting or specialized sports training (such as gymnastics or ice skating) that interfere with a normal school day, and health reasons.
Meghan completely takes care of her classes on her own. She loves it. She spends about 5 hours a day reading text books, taking notes, watching online videos, doing projects on the computer, writing papers, and taking online progress tests. We have an outside proctor that administers mid-term and final exams as the NCAA requires. There are regular, honors, and AP courses to choose from. So far so good. And at any time, she can return to our high school. My hope is that she will sometime before her senior year - she is currently a sophomore.
She also goes to swim practice six days a week. High school season for now and back to club swimming after that. I drop her off and pick her up a little over 3 hours later. This is her socialization and her time to do what she loves. She's been through a lot, and we are doing the best we can at each moment in time. I don't know all the right answers, and I struggle daily with what are the best choices. I have to get over the need to explain these things to people. Because I really shouldn't have to. But I see it in their faces. In their reactions. I hear it in their voices. She's doing home school? Yeah. She is.