When my first symptoms started, I was in eighth grade. I attended a half-online charter school, which meant I went to school three days a week and took classes online two days a week. My symptoms started during the second week of school. By the third week of school, I was missing class to go to doctor appointments to try to figure out what was going on.
Throughout the year, I missed a lot of school. In total, I probably attended 4 weeks of school out of the entire school year. My mom would bring me to school during the lunch hour to provide the opportunity for me to visit with my friends and teachers, and be myself. My parents, doctors, and therapists decided that the social time with friends was more important to my health than an hour or so of class time. I was very grateful to them for that as my friends called less and less over time and the lunch hours were sometimes the only peer contact I would have each week. The lunch hour was typically the longest amount of time I could be away from home without fatigue taking over me for the following week. That hour would usually wear me out for the rest of the day, and often for the next day. Because of my symptoms, I was not able to attend more than one class a day. Thankfully, I had been in advanced classes, which allowed me to continue on to ninth grade without repeating any classes.
Individualized Education Program
One of the things that helped me most was having an individualized Education Program or an IEP. An IEP is a program for students with special needs. Parents, teachers, special education staff members, as well as the student, create goals and accommodations to allow the student to succeed. If I did not have an IEP, school would have been much harder for me, and I would have likely had to add extra years to my schooling career.
Through my IEP, I have the ability to present certain assignments orally rather than written (my hand often gets tired from writing). Because of this hand fatigue, I am allowed to use a laptop computer/iPad to take classroom notes and/or photograph whiteboards. My hands do not get as tired when I type, so this has been really helpful! There is also the option for speech to text on my computer, so I could use that if needed - rather than typing.
I receive extended time to finish assignments, when needed, as I have shown my teachers I can be accountable. I am allowed to leave the classroom to rest when needed. If I do leave the room, I try to only do it when there is classroom work time - rather than lecture times. Many of my teachers know me well enough that they can read my face before I even need to ask to leave - they know when things are not right.
Fluorescent lights in classrooms can be really difficult (tiring) for me. To help with that, some teachers choose to hold class without the lights on - our school has great windows that allow in plenty of natural lighting. I am also allowed to wear a hat and/or sunglasses in the classrooms with the lights on. These accommodations have helped to reduce my headaches and fatigue.
Through my IEP, I was able to, and am still able, to have a reduced class schedule. My current high school has 5 classes per day. I take 3-5 classes per trimester, depending on how my symptoms are at the time of class registration, and how much I feel I will be able to handle. First trimester of this year (my junior year) was the first time I took a full load of classes in three years. This was a huge milestone for me! Since then, I had dropped to 3 classes in second trimester and 4 classes for third trimester. By having a reduced schedule, I am still able to rest when I need, and am able to conserve my energy to allow time for homework in the evenings.
Because of my shortened class schedule, I have had to take some classes independently. If I had not taken some classes independently, I would have to repeat my senior year of high school in order to receive the credits needed for graduation. The teachers at school have mentored me and provided me with class materials in order to complete these classes independently. I really do have some incredibly awesome teachers and school administrators! They have done so much to help me stay on-track with my class.
One other really great assistant to my schooling has been a robot my sister found for me. She secretly held a really big fund-raiser at a local restaurant and then surprised me with a VGo robot on Valentine’s Day of my 10th grade year. VGo is, essentially, Skype on wheels. On days when I’m really not able to get out of bed, I am still able to “attend” classes with the robot in the classroom for me. I can see and hear what is going on in the classroom and my classmates and teachers can see and hear me. It has been a life-saver for some of my upper level classes!
I focus on keeping my teachers informed about what I need to be successful. I have worked very hard to keep lines of communication open and honest between me, the teachers, and school administrators. I have not taken advantage of the privileges I have asked for in my accommodations. I use them only when needed and work hard when I am feeling well. My teachers and the school administrators return that respect ten-fold and allow me the freedom to do what I need to do. Even in new situations outside of school, I have found that by being completely honest, people are SO willing to help me find a way to succeed. There have not been many circumstances during which I have been denied what I have needed. With my explanations, most people are really sympathetic and helpful. If others don’t know what is going on, there is no way for them to help.
I am able to participate in some activities outside of the classroom. I was, at one time, involved in a huge number of outside activities. I have now learned to be very choosy about the time to which I commit myself. I have been able to serve on our student council for the last 2 years and that has been a huge accomplishment for me! We met on weekday mornings at 7 am (once a week) and that is NOT an easy time for me to be awake! However, with careful schedule planning and trying to ensure a good nights sleep the night before, I was able to make it work, most of the time. There are some other shorter term activities that I like to do, so I have learned to make adjustments to my schedule, either at home or school. Listening to my body has been the biggest and best learning I have done. It is not always easy because my desire to keep going is sometimes stronger than my physical stamina.
As you know, I have not always been completely comfortable sharing my story. With the help of my mom, therapists, doctors, teachers, and so many others, I found my voice. Since my symptoms began as an 8th grader, I have worked hard to describe what my needs have been and I have found I don’t need to be dramatic or over-state what is going on because the adults in my life have given me the freedom to express my needs and have honored my requests. That has been so empowering to me! Without their support, trust, and respect, things might have been so different! I found my group of support and my best advice to you is to find those in your life who will support you as you are - don’t be dramatic and don’t embellish what is happening. The truth has made my life so much easier and the journey has been so much more “enjoyable” with such a great group behind me!
Published On: May 01, 2014