First, the three shoes
Red shoes – the teacher. Red Shoes are slick, and shiny, with slim, wax covered laces. Her red shoes make a sharp heel sound when she walks down the hallways, followed by a clicking noise, as the tips of the laces tap the sides of her shoes. When she walks, she means business. She has much compassion for her students, but she must spread her compassion around to all her students equally. Close to her students for only one year of their life, she must lead with love, but then let them go as she finds energy to usher in the next group. She has done this for 20 years now.
Blue shoes – the parent. Blue Shoes are well worn, way past their prime, and full of deep scratches. Not having time for lacing, these shoes are open in the back, so she can slide her feet into them at a moments notice. She loves both her kids equally, but sometimes one takes up more energy than the other, simply because one of her children walks the world in disability shoes. Her energy is focused on both the short term school year, and the life long projection. Everything falls down to her, eventually.
Black Shoes – the student with autism. They are lace-ups with thick gum soles. They are spotless, and laced neatly, since Black Shoes cannot stand for her shoes to get dirty. Black Shoes is silent on the outside, but filled with poetry on the inside. Her shoes may carry her to the places she visits, but her typing fingers take her far beyond the confines of the moment. She just wants to be happy, healthy, and heard.
A Monday, Changes
Today, Black Shoes was good in class. She didn’t have her homework done, again, and said she forgot. The school has provided each student with an agenda for writing down assignments, and I know I keep my webpage updated. I simply do not understand why her mother cannot follow up at home. I never see her mother at school and only met her during registration day. She has failed to attend other school events where she might see how I do things at school. I really want Black Shoes to succeed, and I do care for her, but I have 90 other kids I have to pay attention to as well. Black Shoes does get some help from a special helper, but I think she is capable of much more if she would just focus more.
Today, her mother emailed me saying Black Shoes was having a hard time at school. Apparently, mom is seeing all kinds of worrisome behavior at home. We haven’t seen Black Shoes act out or show us any reason for concern. Maybe mom is just overwhelmed. All I know is Black Shoes could be doing better. I am doing all I can.
This morning marks the 12th night in a row that Black Shoes screamed in her sleep. The melatonin is not working. I have also lost sleep, just making sure she is in bed and staying in bed. Changes at school have her stressed. The changes, overall, seem minor, but she just cannot grasp what is happening. I have tried talking with her, but she just cannot give me any ideas on how to help her. I have tried contacting the school, but they say she acts fine at school. It makes me so angry to see a kid doing well, making all A’s, and then suddenly slip into depression and not turning in homework. I’ve tried getting the teacher to sign the agenda, so I have an idea of what homework she has, and so I can help her, but the agenda is most often empty. It’s in the IEP, but that seems to make no difference. Often times the online posting of assignments it posted too late, or not specific enough for me to know what is happening. Did Black Shoes do her work at school? Does she need her text book? I check online every night, but I am still finding out weeks later that she has zeros.
On top of changes at school, Black Shoes has a project that is due. She struggles so much with long term projects because of her troubles with executive functioning. Despite my work schedule, I have had to find time to do a project with her too. Why can’t these projects be made to only require of her what she can do alone? Why can’t she get help at school from special education teachers? I can’t remember the last time I could just sit with Black Shoes and play a game, or take her out for fun, we know how much I am told by professionals that family bonding time is important. We are always working, when can we bond? If things don’t get done, I am the one who is blamed, and so is Black Shoes. I tried to attend some school functions, but my work schedule clashed with the open house the school had a few weeks ago. Since I am paid by the hour, missing work means less pay. Her needs are too expensive for me to not work.
I have tried communicating with leaders and teachers at school. Some of the teachers respond, and I am grateful for that. But I can’t write emails asking questions I don’t know to ask. I can see Black Shoes needs help, but I have no idea what is wrong. The meltdowns this week are many and I am simply exhausted. I have another kid that needs my attention too. But all I hear is, “You should have thought about that before having children.” I didn’t plan for autism, no one does. I am doing all I can.
My stomach hurts again today. I can’t eat anything but a few bites of pizza pockets. Sometimes I can eat my sandwich at lunch. I do not know why I feel bad. I like my teachers, but I do not understand what they want of me. I am quiet in class, even when I feel like screaming, because when I screamed before, I got in trouble and had my favorite free time taken away from me. I want to ask for help, but I do not know how, or what I really need help with. I understand everything they teach me, I just can’t always prove it. So, I get distracted, and I forget what the homework is. I want to write it down, but I can’t write fast enough when the teacher is speaking. I am not allowed to have my iPod at school to type my assignments on my calendar. I am told I have something called an IEP that helps me. No one asked me to be a part of the conversation. I may not know what to ask for, but maybe if I hear what the teachers want, I can try to talk to them. I want to be good at school.
My helper comes in to help me, and I think she is nice, but I am feeling too much pressure. My brain doesn’t want to work at the speed everyone else wants me to. I used to get time to cool down in a special room, but that was taken away. Now I am asked to do more work. Does no one see how much work it takes for me to sit here and be quiet instead of screaming because my stomach hurts, I am tired, I am confused, and I can’t ask for help? Why can’t anyone here see my pain? I have to learn to read when others are hurting, why can’t others read me when I am hurting? They teach me to express emotion, and when I do I get in trouble because it wasn’t the right time, the right place, the right proportion, or making sense to them. I just want to scream! But I can’t, so I hide in quiet places and play games that calm me. I am in pain all day. I can’t take it anymore.
When I get home, I can see my mother is tired. She wants to help me. She sees I am in pain and tries to tell my school. They do not see my pain so they think my mom is the problem. I don’t have to tell my mom I am in pain, but I still can’t tell her what I need. If I knew what I needed, I would be like the other kids, right? It is kind of like swimming. If you know how to swim when someone throws you in the water, then you will swim to the side. If you don’t know how to swim, you will flap your arms, and kick your legs, and look as if you want to swim, but you still won’t know how to swim. Having someone on the side screaming, “try harder” doesn’t help. Someone asking, “what do you need” doesn’t help because you need to swim and you can’t. It’s too late for a swimming lesson when you are trying to stop drowning. Save me from the water, then we can learn to swim together. Don’t just tell me to try harder. Don’t ask me what I need while I am drowning.
I have feelings I do not understand. I know they are sad feelings. All I can do now is block the world out. I have tried hard to live in their world, but no one is happy with me. They want me to be like normal kids, but I am not a normal kid, no matter how much they teach me to be normal, and no matter how much I “act” normal. I am me. I am a not normal me, but a valid me. I can be very good at being me, but I need help, not punishment. Why can’t anyone hear me? Why can’t anyone see me? Why is it always my moms fault, or my fault, when I fall? Can’t it be the systems fault? Can’t it just be that this is the wrong path for me? I am tired of hearing about all the other students and being fair. No one tries to see the world from my eyes. I have to go to classes and learn to see the world through normal eyes. Why don’t the normal kids have to see things through my eyes? Why are they called normal? Can’t I just be me? I am doing all I can.
3 Pairs of Shoes is scheduled for release in August of 2014.