Me & My Headphones, or why we don’t need to outgrow accommodations.

image of smiling white woman with short dark pink hair, wearing cat ears and over the ear headphones
I went to my first convention of superfans this past week, and it was the BookCon with its 20,000 attendees. That’s a lot of people. Without anything else, that’s a lot. A lot of conversations, a lot of noise, a lot of unwritten social rules, a lot of social navigation.

It could have been a disaster for me, especially on that first day. I didn’t know where anything was. I didn’t know where I should be. I only knew that there were a whole lot of lines, sometimes with clear signs and sometimes not. Lights, sounds, smells, all of it. I would say “I almost ran away from it all” except it’s not almost. I did. I sat in a corner far from the show to eat my lunch in silence. Later, I totally quit the show floor and spend the afternoon listening to panels (a much more sensory-friendly experience for my body). There was lots of running away. There could have been more. I was always able to come back. I was able to find something that meant a lot to me. I was able to have a day that was beautiful and fun and memorable, despite any near breakdowns.

It’s because of accommodations.

I didn’t use any accommodations from BookCon… The one downside to the Con is that there really aren’t very many available accommodations. I created my own. Or, in some cases, my husband thought ahead and created them for me. He packed my headphones. I downloaded audiobooks and music that help me stay centered and calm. Oh, those headphones. They were everything. I could drown out the noise that was making my skin crawl. I could distract myself from the anxiety of losing personal space by listening to a favorite chapter in a favorite audiobook on repeat. I fiddled with wires as if they are a fidget toy. They kept people from talking to me when I was not in a place to chat. Those headphones were everything. It wasn’t all I used, but it was the biggest help. I took breaks! I found quiet spaces with no one around. I found the spaces with dim or natural lighting. I stepped out of line when I needed to. I came late or left early from panels, drop lines, autograph signing.

I share this list, these few examples of a much longer list, to say — I am nearing 34, and I make these adaptations to meet my needs. I was able to have this dream weekend, filled with my number one love, because I don’t feel shame about needing what I need. Yet, all too often, we treat accommodations as if they are something to outgrow. We celebrate when students no longer need chewies, when they don’t wear their headphones anymore, or when they decide to hand write rather than use speech-to-text dictation.

We are celebrating the wrong thing.

It doesn’t matter if someone needs to wear a chew necklace. It doesn’t matter if they need to sit at the table with their shoes off. It doesn’t matter if they need to wear a pressure vest or have a weighted blanket or use a rocking chair or wear headphones. It just doesn’t matter.

It matters if someone is living the life that they want to live. It matters if someone has autonomy. Can they do the things they most want to do? What can they access? What dreams can they pursue? What learning is able to happen? What environments are now available to them? What brilliance and beauty and talents are now able to be shared with the world?

This is what we celebrate. The celebration is not whether I was able to do the second dayimage of white woman with short dark pink hair against a rainbow book backdrop. she has white earbuds slung over her shoulder.
of BookCon with less headphone time… The celebration is this: I was able to access this event that meant so, so much to me. The celebration is not whether someone uses speech or a communication device or sign to convey their message. The celebration is that this person’s voice is now able to be heard in the world.

Accommodations don’t need to be outgrown, though they certainly may morph as people’s needs change. They may even morph from one day to the next. We need to focus our attention on the right things: helping our students have lives that they design and love. Accommodations and assistive technology are not things that leave us bound. They are things that help us fly.

 

On a final note, I was able to create my own accommodations this weekend, but that’s not the case for everyone. Some accommodations really need to be created and provided by the venue, whether it’s through universal design or access to specific needs. Most venues, restaurants, stores, even community parks need to do better. One of the ways that we can make that happen is to acknowledge that these needs exist. They are not signs of weakness or “less”, but valid needs.

Our students need MORE, not less.

Students who receive special education services need more supports. The type of support they need varies — maybe they need instructional support, maybe lots of accommodations, maybe assistive technology… But, generally, an IEP is a layering on of the structures and supports that a student will need in order to access their education and make progress on their goals.

However, the reality sometimes is that our students end up with less, not more. It often doesn’t happen intentionally. It happens because we worry for our students. It happens because of outside pressure by organizations that promote discrete trial teaching. It happens for the same reasons that general education teachers “teach to the test” — because we want the best for our students.

Still, sometimes we aren’t providing the best. Sometimes we are unintentionally causing our students to fall further and further behind. It can be hard to hear that. It was for me. It still is. But, because we love our students, we have to hear it. And then we can be better, do better. Because we want to. For those students.

One of the mistakes that we make is that we remove the content — the math facts, the letter sounds, the historical timeline — from the context. We drill those addition facts every day, but we forget to spend the time we need just manipulating objects, exploring sets, and making sense of numbers. We practice sight words, but we don’t read chapter books aloud every day to our students. I know these things happen. My own children have experienced them. I’ve totally made the mistake of working on receptive language through pictures at a table, disconnected from what we are doing in blocks or pretend play.

But our students have the same right to a rich, meaningful curriculum. They deserve to learn the meaning of “wet” through puddle-splashing, sink or float experiments, and reading books about the weather — not just through a picture in an array of eight. They need to learn more than just facts about the Civil War. They need to read the newspapers, debate the pro’s and con’s to various Reconstruction policies, and see the way those choices still impact our country to this day. Does this mean that we leave our own students to flounder in a too big, too much classroom or curriculum? No. We still accommodate, we modify, we do what we need to do. We just always keep the context in mind. We keep the why of learning. We keep the love of learning. This is how our students build mental maps, expand their schema. This is how they learn to research, to think critically, to solve problems, and communicate their knowledge. Those things are important for all of our students, whether they use single words on a communication device or write beautiful essays by hand.

Another common mistake that I see is less time on instruction, less time engaged. Even the research comparing general education to special education finds that students are less engaged in special education classrooms. This remains true even when students are matched in their skill and need from one environment to the other. We need to ask ourselves: Are we providing access to all five components of literacy instruction? Are we teaching more than just math facts? What are our general education peers doing during their days? And how can we bring that same level of engagement?

Exhibit A: “Fun Friday”, anyone? Does this mean all Fun Friday activities are inherently wrong? Nope! I’ve seen some amazing Fun Friday activities, with rich instruction in literacy and mathematics, with dozens of opportunities for collaboration and communication. One teacher at my school has these amazingly planned cooking lessons that everyone in the school wishes they could do. But I’ve also seen students get coloring sheets in 5th grade, watch movies, and generally be involved in less education. If it doesn’t happen on Fun Friday, it might happen after lunch or after morning work time. I get that students need breaks. I get that students need time to move their bodies. But I also get that our students are struggling — and providing 20% less instructional time is not going to help them gain the skills they need.

There are other ways to meet those movement or social skill needs. We can read books and re-tell the story through acting, singing, and dancing. We can do more hands-on, moving around activities throughout the day. We can look for games, apps, and projects that build number sense, spatial relationships, and turn-taking between peers. I know we can because I see it happen. I’ve seen brilliant activities that connect math to real life in both general and special education. My son’s general education fifth grade class just hosted a market where everyone learned about economics through designing and selling products. There’s so much room for individualization in projects like these, so many ways to target IEP skills, provide a richness of context, and still have those super fun Fridays.

I’ve failed at this before. I know I will fail again. But failure here isn’t about shame or blame… It’s about thinking what we can do better. It’s looking at my schedule, realizing that I want my students to have more time in stories. I see what I can do. I change what I can. Because there’s always room for growth in this journey. Always. And I want to provide more, not less.

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.