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.

Baaaaaaaby shark, or letting joy be joy.

Photo Jan 11, 11 02 00 PM.jpg

This is Baby Shark, with credit to Super Simple Songs for our classroom’s favorite of this viral sensation. My preschoolers loveeeeeeeeee Baby Shark. They also love Santa Shark. And Halloween Shark. If there’s a Valentine’s Shark, or a St Patrick’s Shark, or a Summer Shark? They will probably love all of those too. They dance with Baby Shark. They look for ways to make pools for Baby Shark. They sing and read and love on Baby Shark. And, really, we’re pretty huge fans of Super Simple Songs, period.

But, what is Baby Shark doing on my arm?

I love my job; it feels weird to refer to it as a job. I get paid, but that’s not why I look forward to every day. I wake up smiling because my job is pure joy. I get excited for Mondays, because I get to hang out with clever, creative, and awesome tiny humans every day. I wanted to symbolize everything that I love about preschool. But I also wanted to say more. I wanted to say: my preschoolers are beautiful and brilliant, as they are. We don’t need to change their fundamental way of being in the world. We don’t need to transform them. We just need to support them.

Thus, “respect the stim”. It’s brought up in autistic advocacy circles often, because too many — most, almost all — autistics have experienced the opposite. Shut down. Mocked. Forced to be someone other than themselves. Even my own family — who I adore, who have celebrated me, who have honored so much of my very being — spent many minutes asking me to PLEASE. STOP. ROCKING. Twenty years late, I remember it.

Respecting the stim means allowing.

Stims can be joyful. And they can be necessary. They are a powerful expression of someone’s very way of being in the world. If we catch ourselves telling a fellow human to stop, we need to ask ourselves why. For most of history, it’s because X has not been deemed “socially acceptable”. That’s not a good enough reason. If no one is being hurt, emotionally or physically, then why? Why does it need to stop? And if we’re truly worried about safety, can we find a safe way for our friend, family member, student, etc, to engage in what’s important to and for them? Can we work with them, instead of against?

Respecting the stim means celebrating.

Stims are creativity, joy, experimentation, expression, movement, regulation, and so much more. There are as many stims, ways of stimming, reasons for stimming as there are people who stim. I celebrate people — people who have the right to be their authentic selves. I look forward to a world where “quiet hands” doesn’t exist, where little girls rock to their heart’s delight, where teachers and parents can see the art that exists in a perfectly crafted line of alphabet blocks. It’s a world that feels very far away sometimes, but it’s also a world that you have the power to bring closer.

Respecting the stim means moving.

Some people’s bodies were made to move. And that’s okay. It’s okay if someone needs to pace the classroom while you read a story out loud. It’s okay if someone needs to jump up and down. It’s okay if someone wants to wave their fingers in front of their eyes when listening to your directions. It’s okay. I promise. Let bodies move the way they need to move. Learning can still happen (and often happen better).

Respecting the stim means not always teaching.

This seems to be the hardest one. There’s about a thousand books and articles out there about using children’s interests to teach. And I’m all about that, because aren’t we all better learners when we care about what’s happening?

But, sometimes interests just need to be interests. Joy just needs to be joy. Sometimes listening to “Baby Shark” just needs to be laughing and singing and making silly noises together. Sometimes you need to forget the lesson plan and throw some snowy silver glitter into the air. I mean, take a moment. Think of something you love dearly. What if someone else decided when and where and how much you could do that thing? Or if you could do that at all? What kind of world would that be? Who would you be? And what kind of relationship could you ever have with that person?

Don’t try to twist everything into a “teachable moment”. Just don’t.

 

This is what Baby Shark is to me: joy. Joy that is allowed — encouraged — to simply be. And it’s one of the greatest gifts my preschoolers have ever given me. To learn, by accepting them, what it means to accept myself. It means everything.

Ableism persists.

I promise to get back to my communication series soon, but I’ve found myself troubled over the last week about the very premises with which we approach education and interaction with those who are disabled. All of the high-tech AAC, all of the professional development on literacy instruction, all of the videos about inclusion working around the country are meaningless if we haven’t changed our very lens, the foundation upon which everything else is built.

That foundation must absolutely include:

  • Every child has worth and value to contribute.
  • Every child learns.
  • Every child has a right to equal opportunity.

The catch is — there can be no caveat. There can be no imaginary ceiling that we have placed in our mind, even subconsciously. And it’s not a smile-and-nod, “yes, these are my angels, they are so sweet, they teach me so much” condescension. Those things come through. They come through in the decisions you make (sight word instruction!) and the access you provide (ASD? We must start with PECS!). They come through in the goals you write, the interactions you have, and even the things that you celebrate. If low expectations harms children without disabilities, why would we think it any different for our students who receive special education services?

We don’t have to constantly being surprised by kids — or, worse, never be surprised because we didn’t even give the opportunity. I’ve experienced more times than I can count when a person doesn’t showcase a skill simply because of how much the other person just. did. not. get. it.

My daughter is a great example. We were at a recent medical appointment that opened with, “well, of course she can’t do that, just look at her.” My daughter then proceeded to refuse to use her talker, refuse to stack blocks, and checked completely out. The medical professional had their own opinions confirmed, but never looked to whether they were creating an environment where only their truth could exist.

Meanwhile, my daughter met our new superintendent several weeks ago. She was at school with her classroom staff that completely believes in her. The superintendent was lovely, sitting with her, speaking with her eye-to-eye, not dumbing down her language or speaking around her. My daughter then proceeded to have an entire conversation, introducing herself, telling her how old she was, where she goes to school, what she likes…

Expect greatness. You can start right here, right now, with the students you have in front of you today. Teach to their unlimited potential. Ask yourself: what would change if I really, truly believed that there was no end to what this student could learn? If I remembered that learning shows up in many forms? If I said, “It might take fifty years, but that’s okay because learning never ends”? If I thought — how can I be sure that my students are living the experience of having the right to a well-rounded education, to a voice, to autonomy? To be seen and taught as critical thinkers, as problem solvers, as global citizens?

How many words would think should be available on a communication device? What would your reading instruction look like? How much further than basic math facts could you go? What kind of problem solving opportunities and project-based learning and sense of community could you create? Would you have “Fun Friday” and movies every week if your class was filled with general education students? Would you skip creative writing if your class was filled with general education students?

There’s a lot of things we cannot control. I get that, I do. I teach in a more restrictive setting. And I often teach toddlers, which means no access to same-age peers in public schools. But there’s also a lot of things that we can control. Our expectations are at the very top of that list.

Know that you can never fully know what any individual is capable of, disability or not. My daughter has already far surpassed every limit that has ever been placed on her — and she still has so much left to show the world. My students do it every year. Learning and growth don’t end at a certain grade level or at a certain age. There is no ceiling. This doesn’t change for our students with disabilities.

Celebrate.

rainbow alphabet written with sidewalk chalk on a playground
rainbow alphabet written with sidewalk chalk on a playground

It has been difficult to know where to start. The millions of things that could be said, the things I want to debate, the conversations that I want to have…

Years of experience, problems solved as part of several brilliant teams, the things I’ve learned once I crossed from professional to parent, how do I distill it into any particular starting point?

And yet — easy. Because it all comes back to this: I am the luckiest person in the world. I fall in love with my job all over again every single day. I work with people who see the magic in every small moment. We celebrate every first word. We see the beauty and creativity that exists in lines of matchbox cars. We swing, we draw, we paint, we build sheep and cows and Elmo from play-doh.

Teaching can be difficult. There are plenty of posts about how difficult it can be. Paperwork, lack of planning, salaries that are far too low, so many needs and not enough time, state-directed standards and assessments…

But there is so much delight to be had in a classroom every day. There are children’s smiles and giggles and the wonder of experiencing something for the very first time. There is the light in a child’s eyes when they are seen, truly seen. Or, for many of my students, when they are heard — through their very own voice. Amidst everything else, amidst the search to be better, to do better, amidst it all: celebration.

That feeling? That is what drives me.