I begin my day wearing a backpack that represents my disabilities. I have a few and each one is a rock in my backpack that I can never take off.
Waking up, my backpack is already a bit heavy, annoying really, as my vision complicates picking my clothes, taking my meds, handling the bright daylight and navigating the house when I am tired. There is another rock. My head hurts from a poor sleep from having Fibromyalgia and I have a school day to face. There are two more rocks. Great. Mom is telling me to hurry up, I have so many things to do to get ready, I dont feel hungry and I don’t want to go to school. A few more rocks.
I get out the door with my school backpack too and its heavy and irritating. It has my vision cane, a bottle with 4 of the cups of water I have to drink every day, and the lunch I probably wont feel like eating, to get on a bus, leave my Mom and comfort of my home and go to school. More rocks.
My backpack is heavy, pulls on my shoulders, makes me sensitive and causes me stress.
Off the bus and into the world where I am late for my classes because I can’t find my way, binders to carry with my cane, water, ipad and my already heavy figurative backpack.
I’m in a special class. They don’t understand me and I don’t understand them. Its loud, busy, bright and full of complex expectations that I just can’t get a handle on. The kids in the hall avoid me as they go play sports I cant play, flirt with people that don’t care I exist, laugh about the cool crap they saw on their crazy fun weekend while I was home with a headache.
I can’t find my classes. The aide’s are running around like crazy. My teachers don’t have time for my questions and stories. I just don’t get it. This is too much. What do they want from me? Im tired, my head hurts, my back hurts and I just don’t feel good.
My backpack weighs a ton and its not even lunch. I am a child with disabilities.
Made it through half the day but can’t really recall what I did or learned. By the time I find the cafeteria, down long hallways with kids that don’t like me, I have 2 minutes to eat. Ya, I am not really hungry. Guess I will go to class. Im late again. They look at me with bad looks that I dont like. Cut me some slack people, can’t you see I dont feel good? What is the point. My ipad tells me when to go to class but I cant always find it. Get it? No, you don’t. I just want to go home.
A class I like. I think. What are we learning? Oh Korea? Where is that? A presentation. Oh I have to stand in front of the class. Great. They get to stare at me while I can’t find my words, can’t see their faces, my back burning, head pounding but oh yeah… I have to learn about Korea and the President of the US, and how many people did many great things and I don’t understand why. I don’t want to know. I want to go home. My pencil just rolled onto the floor and this room is too loud. I can’t handle this. Many more rocks.
Getting closer to home time! And we did a cool project in class. That was fun. We learned about electricity. I feel less pain when I understand what we are doing, when I am not late for class, when someone can answer my questions and when I know the day is almost done.
Home time. Finally. I can’t wait to rest. I am a child with disabilities.
I listen to my music on the bus. I can’t hear the other kids, horn’s honking, demands and expectations. Just my music. My own world. I like it there. In my world there is no one telling me what I can and cannot do, no one giving me that look that says ‘what the hell, kid’. In my world, there are no rules, bullies, things I don’t understand, pressures to be more than I feel I can be. Just my music on the bus ride. 25 minutes.
Home! There’s Mom. That makes me happy. I see and love my Mom. But now I want to cry and tell her how hard things were today, how much pain I am in, how scared I am about being different, how mad I am that no one seems to understand and how tired I am of all the stuff around me and wearing this backpack. The one I can never take off. The one almost completely full of rocks from my day. Its 3:30 pm.
Chores! Are you serious? So what if I have laundry and need to work on life skills so I can be an independent adult. Im 15. I don’t care. I’m tired. Few more rocks. So many expectations. Ok, now Mom is being silly and trying to make this fun. It is kind of fun. My back and head hurt, I am behind on my water drinking, getting hungry but I can earn points for doing a few things. I like the points because I can cash them in for money and going out to eat. And Mom is fun sometimes.
There’s my Brother. The kid that is 17, really tall, taller than I will be. Im short and small but Mom says I will grow more. But I wont be like other kids. I won’t drive on the road (Mom says she will let me drive in a field), I won’t be like my brother. He is a genius on the computer, plays lots of games, has a girl he likes, goes swimming, away to leadership camps. I know deep inside he is my idol and I want to be him. But I don’t like him too. I annoy him. He is frustrated with me. Hates it when I sing. Why can’t he just like me? Why can’t I be like him?
Rocks upon rocks. Because I am a child with disabilities.
Oh! yes! I don’t go volunteering at the Human Society today. That’s Monday’s. Im too tired. Bowling is this week I think. Maybe its therapeutic riding. I don’t know. I don’t want to go. I hate it. But I like it. I would like it more if I wasn’t tired and in pain. Lots more rocks on those days.
Helping Mom with supper is ok. I am a good cook. Mom says I will be able to cook for myself when I grow up. I dont even know what that means. When I grow up? When I am an adult? I dont know what that will look like, what I will be doing. I will still have my backpack though. Maybe I will be stronger and it wont hurt so much to carry it.
Finally, TV time. Mom is tired, so am I. We kind of understand each other. But I’m 15 and she is old. I want to go to bed. Its hard to see the tv screen and there’s so much action Im not sure I know what’s going on. Sometimes I just play my laptop and listen to music. Its easier. Wish I felt better.
Bed time, finally. Great. Meds. Great. I have to brush my teeth. Im tired. But I didn’t end up with a migraine today so that’s good. I can’t remember what I did today. Not sure what Im doing tomorrow but I like Natalie Portman. She is hot. Im a teen. I can say that. Maybe she will marry me when I am 18. We will have kids and a big house. Can I even have kids?
With the last bit of energy I have I lay down with my backpack. Its pretty full. But its been heavier. I didn’t have a seizure, I didn’t have another surgery, no appointments, no volunteering, we didn’t have to go anywhere, Mom and my Brother are doing good, and only one kid called me a jerk today.
I have trouble falling asleep. The back pack is still there. Still full and it still hurts. Tomorrow it will feel lighter. At least for a little while.
I am a child with disabilities.
Tell us what your child says about having special needs? How do you perceive their day to be? Tell us your story!