The Cost of “Normal”, or Why Acceptance Matters

I have debated writing this entry for a couple of weeks — for any number of reasons. It’s raw, deeply vulnerable. And in putting this rawness out into the world, I risk so much. I risk people telling me that I’m wrong, that I don’t know myself, that my lived experience doesn’t matter. It’s too high, too verbal, too wordy, too much this, or too much that. I risk the cuts that come a thousand times over in life, the ones that will surely come from people who think they know me… But have only known the masks I have worn early and often. I risk the anger of those who uphold stereotypes, who push ableism both subtle and obvious, who create little boxes that only further systems of oppression. 

And yet — it is an essential risk, a jump that I must take, this long and wordy essay, because I think there is also value here, for those open to receiving it. There has certainly been value to myself.

I have been different since… always. I was a toddler who read books, real books, who loved grammar and phonics rules more than toys, who recited lines from The Little Mermaid many times over, who needed my schedule to be exactly right, my 4:30pm He-Man and exactly 3 items for dinner. No more, no less, or it wasn’t dinner. The end. 

I became a child who cried for an entire day when she lost the school spelling bee, even though I was just six, because spelling, words, letters — they all mattered that much to me. I got in trouble for interrupting teachers, for correcting them, for not following the social rules of the classroom — on every. single. report. card. Grade 1 through 12. I ate little of the foods my family prepared, choking down a bite here or there, sticking mostly to deli meat and chicken nuggets, over and over. Not one single vegetable, not one, and not that many fruits then either. I remember crying if someone didn’t use separate knives for the peanut butter and jelly. I had to sit a certain way, in a certain seat, still do. Clothing bugged me. Hair bugged me. Shoes bugged me. Socks? That was NEVER going to happen. 

My reciprocal friendships were limited, one or two who always left when they found other friendships to be more satisfying. I had exactly one birthday party with multiple peers of my age in elementary school. And it ended with me on the outside, always on the outside, as they played truth & dare, as they pranked me, as they mocked me, at my own party. I don’t think I had a friendship last more than a couple months, maybe a year, until late middle school. I rarely went to others’ houses, not even family. I wanted to be at home, where things were comfortable and familiar and routine. My home, my grandparents’ home, and that was it. I remember attempting to stay at my great grandparents and having to be picked up because I could not sobbing over my need to be. at. home. 

I remember these instructions, over, and over, and over: stop spinning, stop rocking, stop making those random noises… stop incessant interrupting… stop the endless talking about my interests… dress differently, more “together”, more “girl”. Remember to shower. Remember to brush your teeth. Be more social. Do more things. One of my closer friends at the time was certain that there was something wrong with me, in the way that I needed to line things up, the way I needed things to be the same, to the point where she even said something to my family. Teachers, too. Counselors. Many over the years. But it was clear that I was not ADHD, the most common childhood diagnosis at the time. And so, I continued on, no diagnosis, just “quirky” and “odd” and “weird” — depending on who was doing the labeling.

But I am not angry at my family, my friends, my teachers. They did the best they could in a time when people didn’t understand. Indeed, they did better than most, in allowing me my endless escape into novels, buying more items for my Titanic collections, and encouraging all of the alone time in the woods and trees that I needed. They recorded my favorite shows on VHS so that I could watch them over and over. They helped me find the exact soft pants that I needed and bought multiple pairs. But these things are not enough, not when an entire culture — your entire school — is telling you constantly that you are weird, you are odd, you are not good enough. 

And so, like many others, I learned to fake it. I faked it hard in high school. Instead of being the girl who always reads and stays at home, I was the girl that was involved in everything. I was the girl who talked and talked to everyone. I studied other people. I talked myself through all the rules that my family uttered, through all the things I saw other people do. I reminded myself to look at people, to say hello to people, to laugh when everyone else is laughing. I wore the clothes that my mom picked out for me for as many days as I could (before returning to literal pajama pants and flip-flops). I pushed myself to go to youth groups, to go to football games, to sign up join do do do! 

And all of that fitting in, all of that masking — it came at a cost. A deep and treacherous cost. There is a depth of lonely aching, of being certain that there is something innately wrong with you. That you must be selfish, self-centered, egotistical, to not be able to understand all of these rules. That there is something wrong with your need to rock, to stim, to make noises. That you must be unlovable. There is an exhaustion that cuts to the very bones of your being when your day is spent pretending to be someone that you are not. It is an exhaustion that takes everything, everything from you, and leaves nothing but gaping holes. It is a cost that left me laying on the bathroom floor, too many nights to count, with tears streaming down my face. Silent, racking sobs. Gasping for air, gasping for life. I remember sitting there on that cold tile floor and wishing that I could die. Considering how I could die. Wondering what would happen if I were to die. Thinking that, whatever it was, it would be okay, because at least I wouldn’t be alive. And it was an entirely preventable depression, one that I’ve only recently learned to connect to all that painful masking. 

Because there are only two other times in my life that I felt that incredibly low. The second was in my early 20’s, when I joined a staff at a school that was filled with similar aged young women. Except I don’t have many shared interests with a neurotypical same-age woman, as if that wasn’t clear already. I didn’t want to go out for drinks, or dinner, or any of those things. I just wanted to talk about teaching. I wanted to belong, but I wanted to belong as me. And I didn’t. I couldn’t. My passion for the last 13 years has been my students, and everything classroom. I collect information about teaching the way others collect subway maps or Lego models; I wanted to talk about that information always. It was my everything. And I was mocked. I was told, again, that I only ever want to talk about one thing. So I tried to be different… To hide who I am. To go get a coffee. To small talk and chit-chat and have lunch with my colleagues. And instead of feeling as if I belonged, I felt misery. That aching, haunting feeling swept back into my life. 

Again, that third time — I took a job as a coordinator, thinking that this was a job where I was supposed to talk about my passion with others. Guess what? It’s not. Coordinating is all about social skills, small talk, and “leadership skills” that get staff buy-in. I fell apart. Every day, all of my spoons were used up by noon, between phone calls and favors and meetings and persuasion and trying so hard to be “normal” and social and follow all the rules that make good leaders.  I don’t think my husband had ever fully seen me that way, so lonely and lost. I hope that I never enter that place again. 

You may be wondering — how in the world does this relate to being a teaching unicorn?

Because you must understand the cost. You must understand that the cost of masking, of faking it, of being someone other than you are — the cost is nothing less than laying on that floor and wanting to die. It is nothing less than feeling as if you will never belong, as if you will never be loved, as if you are worth less than dirt. I’ve lived through trauma, through physical abuse, and none of that abuse brought me as low as those months of masking did. Every time. It is trauma. It is a trauma that cuts to the very essence of someone’s being. 

You must understand what you are asking your students when you ask them to be neurotypical, whether their neurodiversity stems from autism, intellectual disability, or mental illness.

You are asking them to give up everything.
To leave behind who they are. 

To leave behind everything that makes them who they are. 

To become empty in pursuit of “normal”.

It is never worth the cost. It doesn’t matter how great they get at masking, whether they pull off a 4.0 GPA and a smile while doing it. They will be dying on the inside. 

This is why the world must change, not our students, not ourselves. Because we are all worth of love and belonging. But we are worthy of that belonging right now, as we are. Every day, we make a choice. Will our teaching uphold systems of oppression, or will it teach our students that they belong? Will the subtle things we say — the things we think we say with love — support them or cut them? The goals that we select? The curriculum we use? The ways we teach? We are teaching so much more than a skill. We promote acceptance or we promote trauma. It is that simple. 

I know I’ve made mistakes. I’ve made the wrong choices. I am sure that I have accidentally bought that pain to my students over the last decade, and I mourn for any and every time I may have. I use that mourning to do better. Because I never, ever want to be the reason that a child cries alone on the bathroom floor. 

P.S. I do feel like I should add a little note of gratitude to one particular high school friend, who knows who she is, one of my only lasting friends, who always accepted me and my Harry Potter obsession exactly as I am, who always will.

Special Education: What We Do

I think sometimes there are these vague mysteries around what a special education teacher does. That this job is about having patience. Or at least that is what we most often get told — that we must have lots of patience, or that “you must be an angel” (which usually also implies patience). I guess you need to have a lot of patience, though I’ll say I have a lot of patience for my amazing students and very little for the people who call me an angel.

Our job does not require being an angel. It does require skill, talent, and careful planning. Much of our culture underestimates what teachers do every day, so it comes as no surprise that special education is also underestimated. But I think we need to fight back against this. We need to fight back against this so that our profession — and our public schools — get the respect that they deserve. The funding they deserve. We need to clarify our roles so that people don’t enter the profession half-heartedly or willy-nilly.

All that being said, here’s a preview of what I do over the course of the week.

Teaching – This teaching time could be leading a whole group activity, supporting two students to engage in shared use of materials, or targeting individual goals in a 1:1 teaching session. It could be painting, building, counting, or reading with students. It’s not baby-sitting. It’s skillful implementation of all the other things on this list, dozens of things happening simultaneously. It is interacting, relationship-building, scaffolding. It’s not time at a desk. That doesn’t exist in my particular setting.

Important: I am with students from the moment that I arrive at school until the students are on the bus. Yes, all the moments. When I taught in another state, I did have a 50 minute prep period and a 50 minute lunch. However, not every city / district / state has those types of regulations built in. So, sometimes that means that educators are with children for every moment of the day. We still have the same amount of paperwork and responsibilities, which means we do them outside of school hours. .

Behavior Support – Special education teachers may be responsible for both class-wide systems and for designing individual support systems. I want to be clear – I’m not talking about color clip charts here. The greatest teachers are not relying on that type of system. I’m talking about systems for social-emotional skill regulation, sensory integration, and skill development. Rules, values, expectations. And the necessary instruction & accommodations to be able to meet them.

Staff Support – We coordinate schedules, instruction, and accommodations between any number of staff and therapy providers. We teach instructional staff about our students and their IEPs. We train assistants or paraprofessionals on implementation of a behavior plan or an accommodation. We model and provide cues on how to teach a target skill, as well as how to collect data on that skill. We provide training on evidence based practices, such as visual supports, prompting, or reinforcement. We do this on the job, after school hours, via email, via instructional plans, or any number of ways.

Lesson Plans – Guess what? We still align our instruction to the state standards. Like all teachers, we design units and daily activities to meet those standards. We use universal design and/or differentiate so all students can access the materials, whether or not they are “on grade level”. We then create individual plans to target IEP goals and objectives. Incidental teaching or direct instruction? What kind of materials will we need? How many opportunities daily? What kind of prompting? How will we ensure that this skill is generalized and usable by the student in their daily lives? How will this be assessed? How often? This IEP instruction does not replace the grade-level curriculum. Our students access both. It’s the law.

Assessment – There are so many levels of assessment. We assess our students at the beginning of the year, of a unit, of a new skill. We assess their ongoing skill gain on a daily, weekly, or monthly basis through “formative assessments”. We check in on the way they are mastering the grade-level material, sometimes with accommodations or modifications. We complete progress reports several times a year on whether they are making sufficient progress towards their IEP goals. We complete bigger assessments for IEPs and eligibilities and sometimes just because they’re needed. I personally take data on every student’s IEP goals every single day. I can’t wait until half of a month — or half f a quarter — has gone by to course correct. We graph that data at the end of every week. We review whether students are making progress towards their goals based on visual analysis every 2-4 weeks. We change our instruction based on that feedback. I don’t teach to the void, hoping my students pick up something that I drop. I use that data, whether it’s numbers or qualitative notes or digital portfolios, to change my teaching. Because there is almost always something that we can do better.

Accommodations – We ensure that students’ accommodations are implemented across their day, whether it’s in the classroom or in the gym or transitioning from the bus to the classroom. Accommodations can vary as much as the kids that we teach, but might include things like: visual schedules, visual directions, wait time, pre-teaching, additional time on tests, communication devices, modified seating, simplified directions, on and on and on. And if those accommodations require teacher-made materials? We are the ones who are making them.

Communication Systems – Sometimes our students need additional support to communicate. We work with speech therapists that serve our students to assess which systems might be best, trial these systems during the day, and then provide ongoing instruction and support. We might do programming of additional needed vocabulary words, provide parent training, or help instructional staff understand how to use them throughout the day. We always, always make sure our students have their talkers with them.

Note:  I feel like this is one of the paragraphs that needs a caveat — the unfortunate experience of many families is that this is missing. But it’s up to us to change that. We can do better. We can make sure every child has a voice. We can ensure that their voice is both available and respected. This is why it’s important to detail all the things that we get right. We can then challenge ourselves and our colleagues to continue to raise the bar. And hopefully inspire the wider world to see us as the processionals we are, who deserve professional wages and respect.

Materials – Oh my gosh, the materials. The lamination paper, the velcro, the color ink on my home printer. The clipboards, the data sheets, the manipulatives… We’ve got to find it, prep it, organize it, store it. Clean it!

Cleaning – Yep, we clean. We clean tables. We sweep floors. We bag up trash. We wash dishes and cups and silverware. We wipe down changing tables. We help clean up bodily fluids. We do what we need to ensure that our students have a clean and safe environment all day long.

Family Communication – We communicate with families in a wide variety of ways, depending on what our students need. My students are early communicators, and it can be difficult to reflect or share their day with their families. After school, I send videos, pictures, notes, and stories to families so that they can see what their student is doing each day. I respond to questions and emails that pop up throughout the week. Other people send home daily notes, write in agendas, send emails, or call. There’s a wide variety, but generally we need to touch base with families more often than some teachers due to the difficulty our students may have in sharing their days themselves.

Paperwork – Wow, paperwork! And there is so much more than just the IEP, ESY IEP, and eligibility paperwork. I’m just going to list some: IEP-at-a-glance sheets, caseload management forms, interpreter requests, releases of information, transportation requests, consultation requests, referrals for evaluations, consent for evaluations, therapy notes, data sheets, assistive technology need documentation, medical needs documentation, ESY planning forms, communication logs, reinforcer surveys or assessments, intervention records, and general classroom documentation needs.

Spending Money – I spent a lot of money on my classroom. People are generally shocked when they hear the amount that I spend each year. But when I started, my classroom had a couple of tables, bookshelves that blocked line of sight for preschoolers, and some chairs. We were given some cast-off toys from other preschools so that we could get started. And we did have a pretty awesome alphabet rug! Over the years, I’ve transformed our room into a thing of beauty, a place that we all want to be in every single day. We have a squeeze machine, a crash pad, giant building blocks, a rich and diverse library, toddler-size bookshelves, and so much more. It doesn’t come free, and our school budgets are constantly strapped. Education has not been a priority for our national system for far too long, especially public education. I donate when I can, what I can. I have friends who help out. And I’m not the only one — the average teacher spends $500 out of pocket every year. I buy books. I buy more books to replace the ripped and chewed books. I buy toys to replace the broken toys. I buy chewelry. I buy lamination paper, velcro, tear-resistant paper, clipboards, iPad apps, Chlorox wipes, and about a million more things.

School Stuff – And then there’s all the school stuff we have to do. Attendance, email, faculty meetings, department meetings, team meetings, school events, school spirit, collaboration with colleagues, beautifying the environment. Hanging artwork, writing about the skills we’ve taught, sharing lessons. It’s a beautiful thing when a school works together to create a space that is designed for kids. I’m lucky enough to be at such a school.

Research  / PD – Teachers generally have to do a certain number of hours to renew their certification, but most of us do more than that. We read books, find research articles, follow blogs, and generally find ways to continue up our game. I have colleagues who volunteer at DonorsChoose to help other teachers, or who turn-key important information from science and social studies conferences to the larger school community. I have friends who moderate Facebook groups that challenge practitioners to grow in our understanding of children with complex needs. Very few of us are not giving back to the teaching community or seeking out new knowledge on a regular basis.

Caring – I left this one for last, because we all know it’s the most important. Learning happens through relationship. Learning happens when kids feel safe and loved. The public trusts us with these precious souls for 8-9 hours every day. I know what a privilege and honor this is. I promise to never take it light.