He's 10 years old and he's the most amazing person I've ever met.
He sees the world differently than anyone else.
He gets right out of bed in the morning and takes his shower. He gets dressed, but only elastic waist pants or shorts because he can't button jeans and the material bothers him. I make sure he has one of his own shirts because he will often put on one of his brothers which are two sizes too small without realizing it. I remind him to brush his hair and put on his shoes.
We have breakfast together. He loves food, loves to sometimes help me cook and to try new flavors and new ideas. During breakfast he writes in his reading log which book he read the night before and what 'habit' was shown (a leadership program idea from school). I have to remind him to use full sentences and include a period. Breakfast is done, but his hair still isn't brushed, so we go into the bathroom together and make sure it gets done. Then it's time to remind him again about shoes, usually without socks because "socks are too tight, they bother me all day". He much prefers shoes with no strings because he still struggles to tie his shoes. We go back to the table to get the reading log that he's forgotten to put in his backpack. As we're walking out the door he tries, just like every day, to get something else out of the fridge to eat. He eats when he's anxious, and the idea of going to school today, just like every day, has him worried.
When we get in the car he sits in the backseat. He knows his brother loves to sit in the front, and he loves to make people happy. As we drive less than a mile to school I can see him in the rearview mirror, sometimes wringing his hands, sometimes tapping one foot, often picking up his backpack and then putting it back down again, always moving and fidgeting. His nerves are amping up. He knows what's coming and his body is already having a fight or flight response. He wants to fly but he knows he can't. He'll ask me again "How many hours until you pick us up Mom?" "How many days until Friday?" "If I get sick will the nurse call you?" Sometimes he doesn't ask, and those are the worse days. Those are the days when I can see the sheen of tears in his eyes because he's so scared. But he's a big boy, and he knows how important school is, and he takes a couple deep breaths and he fights back the tears. When we pull up in front of the school he takes a giant breath before he gets out of the car, and he puts his mask on. He's the bravest little man I've ever met. Knowing what he is facing, knowing what he is squaring his shoulders and making himself go through every day, there are more mornings than not that I am the one fighting tears when the car pulls away.
His mask is what helps him survive. It's the invisible shield between his true feelings and his fears, and what he knows the teachers and other kids at school expect to see. It's what keeps him from breaking down and crying in front of everyone, because "if I do that, I will look like a fool in front of everybody. I just wish I didn't feel so close to doing that all the time." Whenever he has time in the morning he will go by and see his teachers from previous years. He seeks out hugs from everyone who will give them, he builds up his confidence one little bit at a time, with a smile, a 'how are you', a glance at the rooms where he did it, where he made it through and got great grades. He loves to help them with any little thing, setting up chairs, running something to the office, anything at all. It makes him feel useful, special even. But soon enough it's time to go to his own class, and there's no more stalling.
Fourth grade is serious stuff. It's more work, more writing, more complex subject matter and concepts to learn. It's sitting still for longer, focusing for longer, staying organized and taking on more responsibility both for studying on your own and knowing what to bring home. And here is where the hardest part of my son's day starts. He has sensory processing disorder and dyspraxia. Sensory Processing Disorder is a problem with the nervous system, my son's brain organizes sensory input incorrectly, which prevents him from being able to respond with the correct behavioral and motor responses. Since his brain doesn't organize this input and put it away in the perfect little compartments like most kids, it quickly becomes much like his room after a rainy weekend ... completely cluttered and impossible to use proficiently. When you add multiple inputs at one time, kids talking in class, people walking by in the hallway, the teacher giving instructions, someone's chair squeaking on the floor, the bright lights in the room, a lot of kids with SPD will simply shut down. Trance out. Their brain says "THAT'S ENOUGH! MAKE IT STOP!" and in order to protect itself it will do just that. And for a brief minute or two my son will have blissful peace. For just 60 seconds or so his heart will start to slow down, he'll start to catch his breath, he won't feel quite so shaky, his head won't hurt. Until the teacher taps on the desk, or calls his name. When he focuses again what does he see? The rest of his classmates as well as his teacher, all staring at him. His heart rate skyrockets, and his nerves hit Olympic high diving levels. But he fights. Mentally and emotionally he fights down those tears that are threatening to break free, and he tries again. He pushes all that excess emotion back behind the concrete doors he's built in his mind, the doors behind his mask. He knows he's different. He knows it takes him longer to get work done in class even though everyone else is already done. He knows he doesn't write as neatly as a lot of other students, and that his grades are horrible even though he knows the work. But he keeps trying. He keeps fighting through every day. He doesn't understand why he has so much makeup work to do, or why he knows his subjects backwards and forwards but continues to get 46s or 65s on his tests. He also has Dyspraxia, aka Developmental Coordination Disorder, a neurological disorder which affects gross and fine motor planning. Which in plain English means his brain has to concentrate much, much harder to do the simple things like writing, running, riding his bike, or coloring in the lines. Sometimes his zeros end up looking like 6s so he gets an X. When he's writing out an answer in English he has to focus so hard on making the right letters that he forgets to capitalize, or forgets the period, so he gets an X. More and more X's pile up. He expends so much energy focusing on writing down the notes from the board that he doesn't process the directions the teacher gives out loud. When the rest of the class moves on to something else, or goes to get a specific book, he is left sitting, completely confused as to what is going on. His entire school day is one giant game of catch-up, try-to-figure-out-what-I-missed, and wait-a-minute-what-worksheet?
So, back to class. It's finally lunchtime. Time for a break, time to decompress. Time to recharge and just breathe. FINALLY. Only problem is lunch takes place either in the classroom, where the constant sensory input is still going on, or in the lunchroom, which takes noise, lights and physical awareness to a whole new level of stressful. He eats his lunch, talks to his classmates, and through it all keeps that mask firmly glued in place. He jokes around, and after a while all this noise and visual input has him almost giddy. He bounces around, he wants to pace, to get up and somehow let all this overwhelming information loose so his mind will just calm down. "Mom, it's like my head is too loud all the time. I can't ever get it to be quiet. And then when everything around me gets loud too, I feel like I'm going to just explode." But if he gets up, tries to find that outlet, he gets in trouble. He's told to get back in his seat, to calm down. Beyond anything else in this world he wants to make his teachers happy. Any adult really, but especially his teachers. So he sits. And he pushes all that input, all that energy back behind the doors.
It's time to go back to the classroom. More work, more trying constantly to focus, more being hyperaware of his differences but trying not to let that show. It's almost time for reading. He LOVES to read. Loves to escape into a story, loves to have 15 minutes to not have to worry about how poorly he writes, or why he got a 60 on the math test. The only problem is, he now has classwork to do during reading time because he didn't finish in the allotted time. So instead of the mental and emotional break he so desperately needs, he sits and does classwork, once again amped up and nervous because there are so many kids who are not being singled out to do work, who are reading and enjoying their time to decompress. Plus he's failed his teacher yet again by not finishing on time, and he HATES that. But at least there is recess to look forward to right?
Most days recess is a godsend for my son. He can run around, spin in the tire swing, climb and jump and just let it all OUT. Burn up some of the stress and nerves and just be a 10 year old kid. Stretch his muscles and catch his breath and let his brain just take a break. On the playground everyone is equal and everyone is smiling.
But some days he is told he has more work to finish up. He is made to sit and do more classwork while his classmates play and laugh and run and get that much needed brain break. His nerves hit absolute overload. He is terrified of what all his classmates think, seeing him sitting there, singled out to do still more work. "They probably think I'm stupid because I just am." Plus his teacher has to be mad at him by now, if she's making him sit and do this, so he's failed her yet again. It never ends. And with no outlet left to him, he pries open those doors yet again and shoves all those nerves and fears and worries back behind them.
To be VERY clear, my son is not stupid. Quite the contrary, he is extremely smart. He thinks in pictures. He understands complex math concepts with just a few moments of discussion when at home. He comes up with these amazingly detailed stories and ideas. But he FEELS stupid when he's at school because he isn't exactly like the next child. Because he's different, because the best way for him to learn doesn't fit the 'mold', he is separated, singled out, made to be very aware that he's not the same.
It's time to go back to the classroom. More work, more writing, more reminders that he just can't keep up with the other kids. He doesn't remember to look at the board, to see what tests he needs to be studying for tonight, to know which books to take home. He's too focused on just getting through to the end of the day without losing it.
Then it's finally time to go home. When I pull up to pick him and his brother up, I watch him coming towards me, half walking, half running, his mask still on, counting the steps to the car. And then he's inside. He flops into the back seat and drops his bag, letting out a huge sigh. He's done it. He's made it through another day without busting out in tears, or screaming at the top of his lungs, or taking a swing at anyone. Some days as soon as the car door shuts and the mask falls away those doors, so packed with stress, fears, nerves and those feelings of just not being good enough, some days they bust wide open right away and the tears start. He'll ask me "Mom, can you PLEASE talk to Dad about homeschooling me? Please??! I just can't take this anymore!" Or sometimes the tears are so bad that I know not to say a word, to let him get it all out before I even try to speak, to offer him what little comfort I can. But the worst days of all are the days he doesn't speak, when his expression is just sheer defeat. Those days he looks out the window and doesn't talk on the way home. And I worry. I worry about the things he's thinking, that's he's not good enough, not smart enough, that he's too slow, too stupid, and that there is just no end to this feeling every day. Many afternoons he will come home and flop on the couch. He doesn't want to talk about school, he just wants to breathe. When we do finally get him talking about how his day was the tears ALWAYS return. He tells us about sometimes going to the bathroom and locking himself in a stall just to cry. He talks about not being able to do anything the right way or at the right time. He says he feels terrified all day every day because he is never totally sure of what is going on. And oh yeah, he got another 50 on a spelling test. Once I am able to calm him down and let him get it all out, we have a snack and watch a TV show, something mindless and funny. He hugs me every 10 minutes or so, as if reassuring himself that it's okay, that he's home and I'm here and he can just relax. Then it's time to do our homework, something that actually goes pretty well in our house. When able to do his work at home, in his safe place, my son thrives. He feels confident enough to ask questions if he gets confused. He explains what he's working on to me, and I'm amazed at his grasp of how things work, why they work that way, and his understanding about the different ways that something can be done and still be correct.
Today my son will have maybe 3 hours of stress free time. Time to just be a kid, time to let his brain relax and his nerves calm down. Time to play with his younger brother's friends because no one from his school ever calls wanting to hang out. He will have 3 hours to JUST BREATHE. And then he will remember that tomorrow he has school again, and his nerves will amp back up, he will need melatonin before bed just so he can fall asleep and stay asleep tonight. And when his father and I go in and kiss him goodnight he will often let one or two of his worries slip "I probably won't get to do reading tomorrow." "Did you find out anything about homeschooling?" or something like that. Sometimes I go back in and check on him an hour or two later and he's still laying there, staring at nothing. When I ask him if he can't sleep he'll let out a big sigh and say "I'm just worried about school. But I'll be okay."
So just to review, my son is 10. He has two brain-related disorders diagnosed by his doctor and occupational therapist. When his brain says it needs a break during class, he is reprimanded for it. If he asks for a break out loud he is told "that's just an excuse" because he needs to learn to cope. He is expected to be exactly the same as every other child in school, or at least to learn how to be like every other child, and that expectation is killing his spirit. It's killing his thirst for knowledge, his confidence in himself, and his belief that people other than his family really do love him (because why would anyone love someone who is so bad at all of it?). When we talk to his teachers and his administration we are told that he seems fine in school. He won't tell anyone there that he's feeling so bad because he feels he is the one letting everyone down. He feels if he says he can't stand being in the classroom or that he wants to cry all the time that the teachers and administrators will have their feelings hurt or might get in trouble. The school says that yes his grades are struggling but that's normal at this age. We are told that tests can be done and accommodations can sometimes made but that overall he is going to have to learn to manage it.
How many adults do you know who could manage it? How many could face that kind of constant defeat and reprimand at their job without throwing up their hands and quitting? Or worse lashing out in anger at everyone around them?
As his mother I fight a battle too, every day. I fight not to go up to the school and pull him out. Not to bring him home and enroll him in virtual school or start homeschooling. Not to start letting him learn in ways that will not only work for him but that will also help boost his confidence back up, help restore his interest in learning. I tell myself he needs to learn how to handle tough situations on his own sometimes, that he needs the interaction with other kids his age, that he needs the structure. But the structure is quickly becoming a prison, and every day the list of reasons to remove him grows bigger. Right now I am still fighting it, but I do not know how much longer I can hold out.
So now you've met my son, and you're asking me what I want from all this. Here's what I want.
- I want someone to understand that my child has a better understanding of what he's learning than he's being given credit for.
- I want someone who will work to support him and the way he learns, differences and all, in the school setting.
- I want him to have sensory breaks when he needs them. They can be 2 minutes or they can be 20, but when he says he needs one I want him to get one.
- I want him to have recess every day, no exceptions.
- I want someone to look past the missed punctuation and the sloppy numbers and see that he can tell you details about history that you never even learned.
- I want someone to honestly and truly understand how hard he fights every day just to be in the classroom.
- I want him to have a chance to learn without constantly having the the threat of incomplete work hanging over his head or piling up on his desk.
- I want accommodations to be put in place and to stay in place until we, as his parents, decide he is emotionally ready to try it without.
- I want everyone to realize that he fights battles they have never had to experience. That he is there to learn about math and reading and science and much more, but he is not there to be taught how to harden himself or to cope. He is already coping so much more than you will ever know.
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I want someone to be completely honest with me if these things cannot be done, so we can explore other options for his education.
My son is unique. He is amazing and kind and so much stronger than people realize. He fights silent battles inside his own head and body every day, but he's expected to function just like everyone else because his disabilities aren't visible to the naked eye. Up to 1 in 10 people suffer with some form of dyspraxia. And up to 1 in 20 children currently battle sensory processing problems. We are lucky enough to have discovered more about our son's issues so we can learn how to better help him, but what about those children who are undiagnosed? What about that child sitting in the back of the classroom who gets yelled at for not sitting still, or for not completing everything on the assignment?
Who fights for that child?
