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My Plan to Survive High School With Hypotonia

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I still have a month until school starts, but I’m already worrying about next year. I’m starting high school, so that means a new, bigger school, new guidance counselor, new teachers, new classmates, and new expectations. School is 10 times harder since I have hypotonia, so this is my plan to survive:

1. Tell every teacher I have hypotonia

In the past, I’ve only told teachers in classes I think hypotonia will affect. When hypotonia shows up in ways I don’t expect, teachers often think I’m lazy. This year, I’m gonna tell every teacher because hypotonia affects my classes in ways I don’t even realize. For example, since science doesn’t have essays or require physical activity, I didn’t think my hypotonia would be a problem. But when it took me longer to write down notes, the teacher got frustrated. To prevent this this year, I will tell every teacher, even if I can’t anticipate how hypotonia will affect the class.

2. Write letters to my teachers instead of telling them face-to-face

Over the last couple of years, I’ve told teachers I have hypotonia face-to-face before class. Sometimes that brought on a conversation I didn’t want to have or feel comfortable having. This time I’ll instead write individual letters to each teacher and give them to them after class as I’m leaving. That way, I don’t have to worry about forgetting to tell them important information, and if they have an issue, I don’t have to be embarrassed and have the conversation in front of all the other students.

3. Keep a doctor’s note on hand

When you claim to have a muscle condition no one’s heard of where your muscles are weak and you need to type instead of write, it’s expected that teachers aren’t going to believe you. Way too many times, I have been denied my IEP accommodations because I’m “lying” about my “fake” muscle condition. Even when sending in a note from my parents, my teachers have told me I can’t type. From now on, I’m going to keep a signed note from my doctor saying I need to type, just in case any issues arise.

4. Limit the amount of clubs I’m in

This one’s gonna be a toughy. I love being involved with my school and community. Last year, I was in my school’s Connections Club, Chamber Choir, and Peer Tutoring program. Out of school, I was also in Girl Scouts and Girl Scout Chorus. Of course I’m not going to quit any clubs I already made a commitment to, but I’m going to try to limit the clubs I join. I love helping out at my school, but having a club every single day of the week is both mentally and physically exhausting. This year, I’m only going to choose a few clubs to be in so I don’t wear myself out in the first month of school.

​5. Stop hesitating to admit I need help

Over the past couple years, it took a while for me to admit I needed help. I live in a society that says we shouldn’t need help, we should “tough it out.” I would put up with way more pain than I had to just to “be independent.” I would write entire essays by hand, run the track until my legs fell off, and put up with three months of bullying, just so I wouldn’t have to admit I needed help. Now I realize asking for help doesn’t mean I’m weak. I’m just different and have different needs and abilities than my “normal” teenage counterparts (although what teenager is normal anyway?).

6. Learn (and accept) my limits

A while ago, I would keep pushing myself even if I knew I’d surpassed my physical limitations. I didn’t want to look weak. The best (or really worst) example of this is when the entire eighth grade went on a trip to Washington D.C. last year. The teachers tried to cram almost everything you could do in D.C. into two days. That meant a lot of walking and very little time to rest. We had to climb up a lot of stairs during most of our activities, which made everything hurt 10 times worse. I refused to admit, even to myself, that I was in pain. I kept telling myself, “I’m OK, I’m OK. I have to be OK. The teachers aren’t gonna wait for me to be OK. The world isn’t gonna wait for me to be OK. I have to be OK.” The result was me being in so much pain that I couldn’t sleep, so the second day was even worse. The weekend after, I could barely move. This year, I’m gonna stop saying, “I’m OK” and instead ask, “Am I OK?” I’ll make sure if the answer is no, I’ll stop what I’m doing and talk to a teacher.

7. Learn to take a deep breath and stay calm

Since hypotonia isn’t a very well known condition, many teachers believe it’s fake. This leads to misunderstandings and disagreements. Instead of pulling me aside after class, I’ve had teachers yell at me in front of all the other kids. Then, one of two things happened. 1. I got angry and yelled back, or (more commonly) 2. My cheeks turned bright red and I bursted into tears. In both cases I was left upset and crying for the next few periods. This year, I’m going to try to remember to stop, take a slow deep breath, and speak in a calm and level voice. If the teacher lets me, I’ll try to explain calmly that I have hypotonia. If I can’t maintain my composure, I’ll try to at least ask if we can talk after class. Afterwards, I’ll talk to my parents or the guidance counselor about what happened. Either way, I’m going to try to stay calm and handle it in a mature fashion.

8. Give up on “normal”

All I want is to be normal. I want to be able to do everything a normal teen can do. I want to be able to write a whole essay or at least a medium-length paragraph without my hand cramping the rest of the day. I want to be able to climb a set of stairs and not feel like I’m going to die. I want to not have to get in an argument with teachers. I would give anything to be normal. But I need to accept I’m not normal. I have to type essays. Stairs are hard on my legs. I have a muscle condition that’s widely misunderstood, so there are going be some disagreements. I’m not normal. I’ll never be normal. But maybe, just maybe that can be a good thing.

Image via Thinkstock.

Originally published: August 8, 2016
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