What My School Day Looks Like as Someone With Hypotonia

School is not fun for many people, but I have hypotonia and it can be downright hard. Each day leaves me out of energy and in lots of pain.

This is what one school day looks and feels like for me:

6:00 a.m. Getting Ready

My alarm goes off, I groan and reach for my phone, though I accidentally grab a stuffed animal a few times (as a side note, stuffed animals are soft and adorable and make good weapons for those who wake me up). I get up, grab my clothes, and go into the bathroom to change. On my phone I put on a new episode of a show I was too tired to watch the night before and I change while leaning against the wall for balance. I go downstairs and put on socks and shoes and fill my water bottle. If I wake up with pain, I take ibuprofin as well. I go into the bathroom to do my hair while heating up a frozen breakfast, anything, if I know I’ll have time to eat it. If not, I shove belVita breakfast crackers into my mouth while trying to decide what I can do with my hair. Some days, I can put my hair in a pull-thru braid, other days, just brushing my hair and putting it in a low ponytail hurts. I make sure I have everything I need, then I throw on my coat and go to the bus stop. At around 6:50 my bus comes. During the bus ride, I either talk to my friend (if he’s on the bus that day) or I listen to a learning track for a song I’m learning in Girl Scout Chorus.

7:00ish a.m. Arriving at School

First period starts at around 7:30, but the bus drops everyone off at school pretty early. I go to my locker, grab what I need for periods one through four, then go to my friends’ lockers and goof around with them a bit. I head to the girl’s locker room when the 15-minute warning-bell goes off because I need an extra minute to change for Physical Education since I need to lean against the lockers for balance and sit down to put on my shoes.

7:27 a.m. Physical Education

I go into the gym and sit in my assigned spot while fidgeting with my bracelet. Mr. A, my awesome gym teacher, comes in and jokes around a bunch, which puts me at ease, even though I’m still a bit nervous because it’s PE. The other kids in my class are all girls, but they are sporty girls. I’m the disabled girl who loathes sports with all her heart and end up in the class with super sporty, super competitive girls. We are playing volleyball. In teams. Against other people. Yay. I can serve pretty well, and in theory, I should be able to bump and set the ball since I did well practicing. Important part of this sentence being “in theory.” My reflexes stink, so I have a hard time moving quickly enough, and when I need to bump the ball I set it, and vice versa (thanks, body). My teammates seem supportive at the beginning of class, but when they say, “It’s fine,” through gritted teeth after I miss the ball again, I feel they are getting sick of me. I have to resist the urge to yell at one of them, who says, “Good job!” every single time I so much as touch the ball. I know she means well, but it’s still super annoying. I’m so over volleyball. We go back into the locker room to change. I have an extra second so I sit on the bench by my gym locker and take a sip of water from my water bottle. My arms are throbbing. The bell rings and I climb up two flights of stairs to my next class.

8:18 a.m. Science

I take down my chair and sit at my table while talking with B, who’s at my table and in Girl Scout Chorus with me. We talk about how excited I am for Girl Scout Chorus rehearsal that night. We do our “Do Now” questions and put the homework answers on the board. I’m one of the first people to put my answers up, and some days, I’m one of the only people to put up the answers. The teacher opens up a Power Point about asexual reproduction — a few boys in the back of the class giggle — and we take notes. Three. Whole. Pages. Of. Notes. I’m only allowed to type written assignments, so I write these notes by hand. We do a few worksheets on the phases of mitosis (when will I ever need this information in real life?) while I sneak sips of water from my water bottle and wait for the period to end. My wrists, hands, and fingers hurt so much from all the writing. The bell finally rings, and I pick up my backpack and go to my next class.

9:04 a.m. Food Investigations

Oh how I love Food Investigations! The classroom has four mini-kitchens. When we come in, we sit at tables in the classroom with our kitchen group. I love how small the class is, only 16 kids in the whole class. Plus it’s super hands-on since we learn about how stuff rises by baking muffins, for example. Today, since it’s close to Valentine’s, we are making chocolate covered pretzels. Ms. N is the best teacher ever. We microwaved chocolate chips and dipped the pretzel sticks, then we rolled them in toppings. Ms. N put out mini M&Ms, peanut butter chips, peanuts, sprinkles and white chocolate. We had to leave them to dry, but they tasted awesome. Standing for almost the entire 42-minute long period causes my legs and feet to hurt a bit, but it’s still super fun. Food Investigations is definitely my favorite class.

9:50 a.m. Chorus

I walk into the auditorium, which is very close to Food Investigations, and sit down. One of my friends, R, runs in panting and annoyed I got there first, then sits next to me. He always tries to race me, even though he knows half of the time I will “win” since my class is closer than his. My other friend, S, comes in and sits with me and R. S and I talk about an upcoming overnight trip the chorus is going on. I’m super nervous since last year’s Washington D.C. trip didn’t go very well. I’m especially anxious about how we might need to go on escalators, since it’s not safe for me to go on escalators. Ms. L, the chorus teacher, calls everyone onto the risers. For 20 minutes we practice a few pages of, “All Too Soon,” a song by Stephen Hatfield that we’ve been working on. Ms. L tells us we’re going to have a singing test, where she listens to us sing a part of a song to see how well we know it. We split into our “singing test groups” and start practicing. A member of our group, who happens to be the only bass in our group, is absent so we need to “borrow” a boy from another group. The other boys in our group keep getting distracted, and one is purposely trying to annoy me, but we get it done. We agree to do our singing test the next day, in the hopes our missing group member will be here then. My legs are hurting so much from all the standing. The bell rings, R walks with me to my locker so I can get everything I need for periods five through nine, then I head up to the cafeteria.

10:36 a.m. Lunch

Yup, you read that right, I have lunch at 10:36. I’m not even in the earliest lunch period! I put down my backpack and my binders at my lunch table, then I get up to buy lunch. Today is chicken nugget day, but since pizza is also served, I buy that instead. I go sit down at my table and eat my lunch. This is one of the few periods where I get to rest a little. I refill my water bottle at the cool water-bottle-filling-station my school has. I take out any homework I didn’t have the energy to finish the night before. Once I finish, I take out my book and read for a bit. We’re released a few minutes before the bell rings, and I go up a flight of stairs for my next class.

11:22 a.m. English

We have a vocabulary quiz today, so we study for a few minutes. We take the quiz which is really short and easy. I try to read more of my book while the other students are finishing, but I’m in a lot of pain, so it’s hard to focus. After the quiz is collected, we are given a poem. We will soon start reading the novella “Of Mice and Men” by John Steinbeck, and this is the poem the title was taken from. We annotate it and write lots and lots of notes. What is it with teachers and notes? We finish up right before the bell rings. I go down a few sets of stairs to my next class.

12:08 p.m. Social Studies

Oh Social Studies, the class I dread. It’s not the notes, Ms. T prints them out and gives them to everyone. It’s not the work, it’s not very hard. It’s not the teacher, Ms. T is pretty nice (aside from the time she refused to let me use my accommodations). It’s the kids. They are silly and joke around and don’t really do the work, making group work impossible. Although some “compliment” me often, I get the feeling they aren’t very sincere (who compliments someone by saying their shirt is flowery?). Today we have a substitute teacher. Lord help us all. We have a reading on Japan with a few questions, but it doesn’t take very long. I love learning about Japan, the masks the samurai used, the tea cups and the gardens are beautiful. I turn in my papers and read more of my book until the bell rings.

​12:54 p.m. Spanish

I enter the classroom and sit in my seat, which happens to be one row from the windows. Everybody, including me, wants to open the windows, but a boy in the first row, M, is whining about being cold while being the only person in the room not wearing long sleeves. I’m exhausted and in pain so I’m a bit irritable, so the next time M complains “It’s soooo cold!” I say, “Said the boy wearing a t-shirt and shorts!” Everybody looks at me, but I just cross my arms and roll my eyes. Class starts, we have a test on reflexive verbs and daily routine vocabulary. The pain in my ankles and feet makes it super hard to think in English, much less Spanish. Nevertheless, I finish my test and turn it in. I open up my book again, but it takes a few minutes to just get through one page. Even the effort to focus my eyes on the words of my favorite book seems like too much to handle right now. As the bell rings, I prepare myself for the last and most mentally draining class of the day.

1:40 p.m. Geometry Honors a.k.a. Math

Yup, I’m in 9th grade, but while others are in Algebra, I’m a grade ahead and honors. And as you can see, I love to brag about it, especially when so many people seem to hate math. Anyway, in math, we are doing proofs. It requires a lot of logic, but that’s why I love it so much. But of course, proofs involve writing. Lots. And lots. Of writing. I’m exhausted, in pain, and questioning why I didn’t give the school nurse ibuprofin so I could take it if I need to. Every minute feels like hours as I wait for the day to end. Finally, the bell signaling the end of the school-day rings.

2:25 p.m. Leaving School

I walk all the way down to the other end of the hall where my locker is. I take out the binders I need for my homework, put on my coat, and go to the bus. On the way home, I turn on my phone and check my texts, email, Twitter, and The Mighty.

2:45 p.m. Getting Home

Once I get home, I eat a snack, take ibuprofin, then take my binders and homework upstairs into my bedroom. I’m so tired I can barely hold my eyelids open, but I have no choice. The rest of the world expects me to be “normal,” forcing me to do things I know I can’t do. I should be taking a nap before Girl Scout (GS) Chorus, but instead I’m rushing to do as much homework as possible while lying down because I don’t have the strength to hold my head up or even sit up straight. Eventually I give up trying, and I go back downstairs to refill my water bottle and make sure my GS Chorus permission slips are filled out. I put back on my socks and shoes and wait for my mom to bring me to GS Chorus.

4:00 p.m. Leaving for Girl Scout Chorus

I love Girl Scout Chorus. I run out to the car when my mom gets home to bring me to rehearsal. I love having the chance to talk to my mom in the car, and she loves trapping me in the car so she can point out microscopic wrinkles in my shirt/jeans/shoes/binder/pencil/water bottle (love you, mom, but you know it’s true). We get there super early, and I’m usually one of the first ones there.

4:30 p.m. Girl Scout Chorus Rehearsal

My favorite part of the week, Girl Scout Chorus rehearsal! I get to see and talk with some of my best friends. It’s so much fun being with people who don’t judge me and love me for being my silly, weirdo self. Even better, most of the other chorus members (not counting the new girls) know I’m disabled. When I told them my deepest secret, they listened and didn’t say anything annoying like, “You don’t look disabled!” They actually listen. One time, I was exhausted and in pain and I confided this in one of the girls in the chorus, and before I left, she told me she hoped I felt better and gave me a hug. These are girls who I can talk to without feeling like a socially awkward idiot. J and C, the directors of the chorus, are super sweet, really peppy, and love to be silly with us. Plus, since they’re teachers, they have lots of hilarious stories to tell us. We all have our own inside jokes, and it’s one of the only places where I feel like I belong. We start out the rehearsal by doing warm-ups in a circle. We then go to our seats, and the directors brief us on their plans for future rehearsals and performances. We work for a while on “God Bless America,” because we will be singing it during seventh-inning stretch during a Mets game (so cool!). We then work on “He’s Got the Whole World in His Hands” (I think that’s the title) because we will be performing at an Interfaith Service thingy. After that, we practice “Let There Be Peace On Earth,” the most hated song by the altos since the harmonies are so tricky. Since two other girls and I know the harmonies well, the directors ask us to stand up in the front to help the other girls. We finish up by going over the new Girl Scout anthem, “Watch Me Shine.” It’s super fun, and even though I’m exhausted and in lots of pain, I fell really good.

6:30 p.m. Leaving Chorus Rehearsal

The saddest part of my day is when I go home. I go out to my mom’s car and we drive home. Usually, we’ll pop into our local pharmacy to grab stuff we need. I need ice cream. What if my throat burns into ashes because I don’t have something cold?

7:00 p.m. Arriving Home and Getting Ready for Bed

Once I get home, I make and eat a frozen dinner and eat my ice cream, then I take my vitamins and allergy medicine (and possibly ibuprofin). I try to make it clear at this point no chores are going to happen without someone losing their head, but occasionally, I am forced to take garbage out, do the dishes or do laundry. I go upstairs and change into my pajamas, clean my glasses and put lotion on.

8:00 p.m. Going to sleep

Yes, I know it seems ridiculous that a teenager goes to bed at 8:00, but to be honest, that is late for me. I usually spend most of my life outside of school in my bedroom, but I go into my room with the intent of sleeping at around 7:00 or 7:30. I have to wake up at 6 a.m. (thanks school district!) so by this time of the day, I’m done. I almost literally collapse in bed, cuddle my stuffed cat (creatively named “Kitty”) and after 30 minutes to an hour of tossing and turning and trying to quiet my brain, I eventually fall asleep, only to do it all over again tomorrow.

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