We Quit ABA: What We Do Instead

ball pit filled with white balls with 2 black and pink sneakers poking out

This specific post is about what we do as a family at home with my children. I am writing because I have seen an increasing pressure on families. I have even seen posts advising ABA therapists to use guilt on selling their services: “what will you regret on your death bed?”

We’ve been through some rocky time periods where we had to confront the fact that tomorrow is not guaranteed. Never once did we worry about whether we had done more ABA. We focused on the laughter, the hugs, the moments of laying in bed and singing “Mr Worldwide” or “I was following, I was following…”

Some of the things will apply universally, across environments, and some may not. Home is different from school. We’re all better off when we acknowledge that. I had to really work to let go of the idea that I needed to be “working on something” all the time. This idea is actually built on cultural ableism: if we do enough, if we continue therapy 24/7, if we work hard enough, our child will get closer to the non-disabled. She doesn’t need me to be her therapist. She doesn’t need me to structure every moment of her day. She doesn’t need to be anyone except herself. She needs her mom. She needs a childhood.

With that framework in mind, here are some of the ways that we have selected to support our children better at home — without ABA.

We start with acceptance. We accept, fully. We accept non-speaking. We accept stimming. We accept passions and routines and repetition. We accept sensory needs and movement needs and an eternal love for Pitbull. This has to come first. Read #actuallyautistic writings. Watch videos unpacking ableism. See a therapist. Phone a friend. Spend time swinging on the playground, enjoying your child as they spin and twirl and chase bubbles. Do what you need to get to acceptance — and don’t write about it on Facebook. Imagine your best friend, your mom, your partner writing about you the way that the world so often writes about autistic children — and without your consent. You wouldn’t like it. It’s dehumanizing and hurtful. Don’t do it to them.

Don’t freak about your child’s timing. Not now does not mean not ever. Allow your child to find their own way. There’s this incredible push to “get kids ready” for adulthood, and it’s striking earlier and earlier. Succumbing to that pressure is a surefire way to spike everyone’s anxiety. It’s why families resort to sticker charts for sleeping on your own, or intensive potty training programs. Doing something at 7, 12, or even 16, doesn’t mean they will be doing it when they are 26 or 36 or 70. Not now does not mean never (and, perhaps a blog for another time, never isn’t the end of the world).

We problem solve with our children regarding “challenging behavior”. A child who is not doing well is a child for whom something has gone wrong. They may be experiencing a health issue that they’re having difficulty sharing. They may be struggling due to inappropriate expectations, a lack of accommodations, or a need for scaffolding. They may simply need some extra connection and time with people who care about them and accept them. We work with our children to uncover the need and develop a solution that meets their needs and ours. For example, we stay with our son until he falls asleep each night. If he wakes up in the middle of the night, we do it again. It meets his need for accompaniment and our need to have our own bedroom space.

We create environments for success. If my child struggles with unstructured vacation time, we bring picture cards and create a schedule for the day. If my child is struggling with long trips to the grocery store, we don’t do long trips to the grocery store. If my child wants to go to the zoo but is struggling with impulsive running away, then we find ways to support their safety (e.g., strollers, kinderpack, wagons, etc). If my child is having difficulty with being safe in their room, then everything in their room is soft and safe and comforting. Our goal is not to do things my way, the “typical” way, the way everyone else does it… Our goal is for our child to be successful. So we change and adapt and accommodate to create that success.

We use restorative practices instead of punishment. We all make mistakes. We act impulsively. We hurt people we love. Teaching relationship repair is one of the most important things I’ve taught my children. When something goes wrong, we brainstorm how to make it right. For example, my son once helped a neighbor mulch their yard in the Spring after breaking something in their yard earlier. It wasn’t a punishment. My son loves gardening and mulching; he loves spending time in the yard with his dad. But it was about making things right with someone we hurt. We could likely all be a little better about that.

We immerse ourselves in augmentative & alternative communication (AAC). We talk AAC. We use AAC to talk with our daughter. We use AAC to talk about what we are doing. We use AAC all day every day. And we see AAC (and all forms of communication) as invaluable. It is as worthy and awesome and beautiful and everything as any spoken word. This can be a huge cultural shift in a world that prizes talking — talking fast, talking loud, talking often. But the thing is — it’s never really about speech. It’s about our feelings, our thoughts, our needs… About connection. And there are many, many, many ways to communicate — with even more ways to connect. Cherish them all.

We love routine and familiarity and comfort. We’re kind of homebodies. We love movie nights and binge-watching Duck Tales. We go to the same stores. We eat the same dinners. We go on the same vacations. We don’t stress about screen time. You may be wondering why this matters, as far as “what we do instead of ABA”. It’s all about removing stress and upping acceptance. There is an unbelievabe amount of stress placed on our autistic children. They are expected to get by in a world that does very, very little to accommodate. All too often, this extends to our family life. We used to be a hiking family, so we bring our kids who are overwhelmed by mountain climbing. Our family expects us at a reunion, so we go, knowing it’s too loud too busy too much. But I refuse to allow my family life to be a source of stress. We adapt. It’s not loss. It’s opportunity. We find new ways to explore our passions, new interests to explore together, new ways to connect that allow us all to be ourselves, fully.

We seek out physicians & therapists who presume competence. When we’ve decided to seek support from professionals, we seek professionals who believe our children are capable. Not capable “within a certain limit”, but capable. Period. We set goals that work on things our children value. We seek doctors who believe my daughter’s “yes” when she says something is painful. We look for therapists who avoid hand-over-hand manipulation and always ask consent. We leave therapists who limit her words or talk negatively about him in front of him. Don’t be afraid to walk away when a therapy doesn’t align with your family values.

We teach. We preview skills before they will be needed. What will be expected and when? For example, we look at maps together before they are studied in social studies. We talk about how long we will have to wait to get through security before we leave home. We model and demonstrate ways to do things. We might show our son how to belly breathe, model new words that have been added to my daughter’s communication system, or bring our children into the process of making to do lists or figuring out what we need at the grocery store. We model these skills again and again, without frustration. We encourage exploration and experimentation, with all the mistakes and problem-solving that comes with. This means that my son can hammer big sticks or plant an avocado seed to see what happens. My daughter can bang on the screen of her iPad as she figures out where and how to get to her favorite apps. We scaffold and accommodate all along the way — what supports can we put in place to allow our children to be more successful? Notice that I don’t say “more independent”. We overly prize independence, when autonomous is more valuable.

We do hard things — together. Sometimes, we have to do hard things. We have to go to the doctor and get a shot. We have to clean our rooms. We have to figure out whether we have enough money when math is hard. We have to deal with the frustrations of life — the ride that was shut down, the brother that makes bothersome noises, the memorization of some key science terms… So we do it together. Even if it seems small to us, it is big to their bodies. We empathize. We co-regulate. And we do the hard things — together.

And, oh, most of all, more than anything, we celebrate. There’s so much joy. There are so many amazing moments that we can have with our children. Different is not less. It is never less. We splash in the pool, while singing “Go, Diego, Go” on repeat for 30 minutes. We watch the same Curious George movie, because the light in my son’s eyes when George dresses up as No Noggin is everything. We joke around with my daughter, whose current favorite AAC phrase is “Got ya!” Oh, we have so, SO much fun. So much freedom. So much flexibility. And I’m so grateful for it all.

Neurodiversity is for all of us.

Everyone in my immediate family has a disability. All of us are impacted differently. Some of us speak. Some do not. Some of us have hyper focus. Some have distracted focus. Some have high energy. Some have low. Some are readers and in love with collecting knowledge. Some struggle with reading and showcasing knowledge. Some are emergent communicators who are working on letter sounds and exploration.

The neurodiversity movement includes all of us.

I’ve been seeing this problematic trend, popping up in tweets and The Guardian, that writes about neurodiversity as a movement for speaking or employed autistics only. It says that neurodiversity doesn’t include those with learning disabilities or intellectual disabilities. It says that people who are married and employed cannot be impacted by their disability or understand anything about the life of someone who is neither.

None of this makes sense to me. It is a gross misunderstanding of the concept, and feels somewhat like deliberate misleading.

First, yes, the self-advocacy movement includes those who are non-speaking or who have intellectual disabilities. It is hands down my FAVORITE movement. It is one that says — yes, yes, your daughter too has rights. Yes, her communication is valuable, whether it is in sounds or gestures or hand-flapping or on her AAC device. She doesn’t have to prove herself. She doesn’t have to become literate or a math genius or dress herself. It says that she is worthy of belonging to her community, her school, her world — as she is.

And the places advocating for her inclusion? For assistive technology? For accessible physical environments? For a living wage that will ensure she has access to high-quality personal care attendants? For access to healthcare and real literacy instruction and a life that SHE designs? It’s the neurodiversity movement. It’s not the “autism mama” movement, which pushes for private day school and segregated ABA-centered settings. It’s not the ABA movement, whose assessments label her as a “pre-learner” and excludes her from even being with peers in a special education classroom. It’s the neurodiversity movement. It’s her teachers and aides who, knowingly or not, have adopted the mindset that she is who she is and their job is to help her access HER best life.

Second, there is this misconception that neurodiversity does not acknowledge disability. To me, this image is more a reflection of our cultural understanding of disability (and our culture’s unwillingness to accommodate). Over and over again, you will meet self-advocates who speak both to their strengths and their challenges, who say “I have a disability AND I am proudly autistic.”

Yes, disability can be hard, even before adding the layers of cultural ignorance on top of it. Yes, experiencing psychosis and major depression and devastating anxiety can be awful and isolating and miserable. But nowhere is there anything in the neurodiversity movement that says “you’re not included” or “this never happens”. Instead, they beg for research to be spent here, on the things that make a real difference in quality of life. They ask for researchers to look at what accommodations and medications and treatments can give people access to the life they need — rather than spending more time and money on curing autism or ABA or vaccines, again. Autistic researchers are leading the way as they research how current “treatments” often create and perpetuate PTSD. Never is the neurodiversity movement against improving quality of life. It’s about improving quality of life without having to stop being who you are. It’s about the world changing to accommodate difference, instead of individuals being expected to hide, change, or smooth over their differences.

Lastly, we cannot judge someone’s experience of their disability by what we see on the outside. I’ve seen this hurt so many children and adults, who don’t get accommodations they need or have to work so, SO hard because the world thinks “you look fine”. I have also seen many children lose access to things they need or love (soccer teams, theater arts, a general ed academic class) when someone realized that, oh, wait, they aren’t as “high functioning” as we thought.

I work. I have a strong marriage. I have two beautiful children. I also have a lot of accommodations from my family that allow be to do those things happily. Before I had those things? I was nearly suicidal from the effort of it all.

Here’s just a small sample of how my life is impacted:

  1. I take medicine for my anxiety.
  2. I have clean clothes and clean dishes because of my husband.
  3. My husband has to remind me to take a shower. I would go weeks and weeks. Like, when people say “how do you count the pool as a shower?” I’m like “It doesn’t?” Because it just doesn’t click in my brain. (Good thing for husbands.)
  4. My husband packs my headphones and my fidgets and anything else I need to accommodate myself when traveling.
  5. My husband makes dinner. Because it it was up to me, we would either eat the exact same food for weeks or order take-out online all the time.
  6. He also explains things to me, like if a friend, colleague, or supervisor said something and I didn’t understand their meaning or intention — I save it to ask him about later.
  7. One hour of socializing in a group of 2-3? That means a 1-3 hour nap to recover.
  8. My children get screen time right after school so that I can have a solid hour to recoup my spoons from the day.
  9. I regularly use text message to communicate with my husband because talking would be just too much and feels / is impossible.
  10. I often walk out of stores without buying anything I am supposed to (or buying a whole bunch of stuff I just threw in the cart) because I just can’t deal with them.
  11. I refused to drive for a long time because of said anxiety and could only go places if someone else could take me. Basically, I went nowhere.
  12. I absolutely have grown-up meltdowns, including stomping my feet and hitting my legs and screeching and storming off to my room.
  13. I have annoyed my friends and family to no end watching the same show, singing the same song, bursting into song at random, making noises, rocking, and so on. (My current favorite is a Fresh Off the Boat line: “I asked for the Randy and he gave me the Brad.” I can say this repeatedly to myself and laugh for 10+ minutes.)
  14. I have gone home crying and torn apart from work on days where there was just too much talking. Too. Much. Too MUCH.

These may not seem that dehabilitating, I guess, but the point is more this — no one would know. No one at my work would know. That’s not including the one million accommodations I’ve slowly built up for myself over the years. The endless mental checklists, the dozen alarms on my phone, the to do lists I print to keep myself organized and on tasks.

And my husband would probably have his own confessions list of things that are hard for him, things I help make happen. We are a symbiotic relationship. We are a one in a million match, making each other better because of it.

As an aside: What’s even sadder to me is that I feel so intensely vulnerable sharing this list because there are people in this world who would hold these against me. I am a FANTASTIC teacher, deeply, and an AMAZING mom. People are blown away by the way my kids have grown and matured over the years. They are so loved and cherished and encouraged. Yet there are people who would read that I have some meltdowns and bad personal hygiene and think that I am not a good parent.

All of that to remember — what’s on the outside doesn’t always reflect what’s on the inside. And we shouldn’t have to disclose what’s on the inside to get accommodations and access and respect. I also can guarantee that, while my daughter’s experiences are different than mine (she is her own person, after all), I can empathize with her in a way that someone neurotypical cannot, someone who has never had a meltdown about sounds or number of foods or what time her show is supposed to be on. Does this mean that someone who is neurotypical cannot be a good ally? Of course not. It just means that, yes, wherever someone else arbitrarily places you “on the spectrum” — you have value and worth and important things to add to the conversation.

Because that’s what is so beautiful about the neurodiversity movement — it is, by its very nature, inclusive. It is for all of us. It is about all of us being able to be ourselves, fully. I don’t know how anyone can be against that.

My Teaching Goal (Spoiler: It’s not Fixing!)

a set of neon shapes in a neat line on a couch cushionEarlier today, I was looking through one of the many assessment tools that are available to me, and trying to decide what’s useful, what’s not, and how it will feed into instruction. One of the warnings on this tool, and many others, is that using different materials or question phrasing invalidates the standardization process.

Except, outside of eligibility where I begrudgingly complete standardized assessments, I don’t care.

A training I recently attended said that children who can do something with family but not under a standardized test condition may have the knowledge, but should still target the skill due to the “performance problem”.

Except, to me, it’s only a “performance problem” if the student in front of me sees it as such, if they believe their difficulty accessing this knowledge is interfering with their goals and quality of life. Even then, I look at accommodations before re-teaching. Otherwise — if it is just a matter of “I can’t show my skills in these test conditions”, it’s okay. If you can name a bunch of farm animals when playing with toys or singing with mom, but not during a standardized test? That’s fine. I’m going to write that you know your (farm animals, letters, addition, etc).

Because here’s the thing — I don’t see my job as fixing children. I think my students are harmed if the primary focus of education is to bring their curve or scores closer to a normative one. It’s also simply not possible for many students, at least not without the terrible toll that comes with masking.

This doesn’t mean presuming incompetence.

This doesn’t mean babysitting.

This doesn’t mean not doing anything.

We hold high expectations and believe in the capability, value, and leadership potential in every single student that enters our classroom. We teach to those high expectations. We look for alternate ways to capture that learning.

I see my job not as fixing, but as supporting. I am here to support each student to finding and sharing their voice. I am here to support engagement through accommodations and universal design. I am here to support learning by ensuring access to the fullness of a curriculum, including real reading and writing and making sense of numbers. I am here to create a world of opportunity for every student to have the best possible life, to create, to think critically, to experiment and explore and uncover.

And students don’t have to become “normal” or “typical” to do that. In fact, our world is made richer when we see and encourage all the ways there are to create and synthesize knowledge.

So, no, I don’t care if my assessment tool is standardized or if I totally skip any and all goals around eye contact (*intense side eye* — why does that even still exist???). Because I don’t need to fix my students. They are already worthy and valuable and wonderful — just as they are

Review: Hello, Universe

dark cover with a picture of a boy in pit/hole while 3 friends and a dog walk on the earth above.Genre: middle grades contemporary

Release date: March 14, 2017

Synopsis: Hello, Universe is told from the perspectives of four weens: Virgil, Chet, Kaori, and Valencia. Virgil is incredibly shy, possibly socially anxious, and lonely. Between school and home, he feels completely out of place. He’s also subject to intense bullying by Chet, which includes repeated use of the r-word. One day, Virgil goes missing. His friend Kaori (a self-proclaimed psychic) and her new client Valencia go on an adventure to find and rescue their friend.

Disabilities represented: learning disabilities, anxiety, deafness

Warning: The bullying in this book can get very emotionally intense and may be difficult to read, especially if you’ve been the recipient of bullying or feeling outcast due to your disabilities. I had to take repeated breaks during the novel.

Review: This book is an emotional roller coaster, with a lot to digest — but it’s also the kind of book that stays with you long after finishing. Kelly captures the intense feelings of what it means to be alone, of what it feels like to be bullied, of what it feels like to be perennially on the outside, looking in. But she also captures the warmth of her characters (Kaori, especially) and the hope that can come in building even one, true friendship.

One piece that Kelly captures incredibly well is the struggle of having a disability in a family and culture that pushes for “normal”. Valencia is hearing impaired, but has never been taught sign language. She is expected to read lips, which is hard enough — and even harder in a world where people do not accommodate. Little things, like facing the person you’re speaking to, can make the difference, yet so many people do not think to do them (or, worse, actively don’t care). Accommodations are important, both official ones and informal ones that we can do for each other. But it also opens up a discussion about American Sign Language — and why the dominant culture and hearing parents still see ASL as “less than”, as something to be avoided and ignored if any hearing can be captured at all. ASL is language. A valid, important, beautiful language. And more — ASL doesn’t just provide a way to communicate, but it also can be an integral part of connecting to Deaf culture. All of which raises questions about identity-first language, pride, neurodiversity and acceptance — important conversations to be having with our children.

I do recommend reading it with children or students, but I recommend doing so as a read-aloud or buddy read. There’s a lot to unpack, and I think most students would benefit from unpacking it with someone. For example, the use of the r-word in this novel should be unpacked together to discuss why that word is so offensive and painful to disabled communities (on top of the bullying way that it is used). It would also provide a great text for talking about what it means to be a friend and to welcome all into our communities, whether our classrooms or our neighborhoods. Overall, this book really captured my heart — wrung it out — and lingered with me for days… Five stars, and I understand why it won awards.

 

What is play?

perfect lines of large alphabet letters in red, blue, and green, sitting on a blue rug
I have really strongly moved away from writing an IEP goal for “play”. What do I mean? I mean things like this:

  • Play functionally with X number of toys for X minutes
  • Engage in cooperative pretend play for X number of minutes
  • Appropriately play with XYZ toys

Basically, anything that includes “functional” and “appropriate” and dictates HOW a child should play. Because that’s not play.

Play is, by definition, self-directed and for the purpose of joy. It is not what someone else thinks we should be doing. It is not for some practical purpose. It is not limited to one (neurotypical) way of interacting with materials.

Lining up trains is play.

Stacking and knocking down blocks repeatedly is play.

Waving a ribbon is play.

Filling and dumping a cup of rice, creating L’s out of Legos to stack on the corners of tables, jumping on a trampoline, sitting by yourself to examine letters for extended periods, linking little cars and big cars by yarn, sticking glow sticks in any spot you can find… It’s all play.

What is the purpose of forcing a child’s play to become something other than it is? To become “normal” and “functional”? (Who defines functional, by the way?) What do we think we are teaching? And what is the child learning?

I don’t know that I can answer “what we think we’re teaching”. I’m really not sure. Because everything I think is important can be taught and experienced through the child’s own play: curiosity, exploration, creativity, shared enjoyment, communicating your likes and dislikes, learning about the world… Imitation, language, and academic skills can all be modeled and experienced without forcing the child to switch from play to work. Because play done in a specific way with specific materials is work. So I’m not sure what the answer to that is.

But I do know what the child is learning: that the things they find enjoyable are not okay. That there is one way of being in the world, and they do not know it. That being themselves is not okay.

Do I think that most professionals or families have the intent to teach this? No. Do I think most students and children are learning that anyways? Yes.

It comes back to this: we need to re-think what skills we are teaching and why. There are often other ways to get at what’s important, ways that don’t involve shutting down a child’s unique way of being in the world. Dig deeper. Ask yourself: what am I really trying to get at? What’s actually important in this moment? How can our classroom environment be changed to better accommodate this need? How can we teach peers and ourselves to better accommodate this need or celebrate this difference?

Different doesn’t mean wrong. Different doesn’t mean it must be changed. Different just means different.

 

 

 

This is part two in a series on selecting what’s important in our special education classrooms. Check out the first post here. Future posts will selecting target goals and teaching social skills as a form of code-switching.

Selecting skills: But why does it matter?

blue Thomas train leading a line of toys that includes a broom... a shoe-less foot is peeking in to the edge of the frame.When people enter my classroom, they are sometimes confused. There is a lot that looks different from a typical classroom. A quarter of our room is filled with things that one would typically see outside: ride-along trains, cars, slides. Half of my class spends their days without socks or shoes. If we are in a large group setting, students may be seated at the table. They may also be doing something else in the back of the room, pacing near to the large group, or coming back and forth from the table. Independent work happens on the floor, standing at the table, in rocking chairs, next to squeeze machines. Students engaged in child-directed play may be stacking, lining up items, or scripting. Not only that, but you’ll find classroom staff delighting in these things, expressing joy right alongside the students.

People see this and think that I am permissive and lenient, that I don’t believe in my students, or that I am not teaching them.

Yet — I get good outcomes. Scratch that — I get great outcomes. My students master their IEP goals. My students develop a ‘functional communication system’. Their self-injury, aggression, and meltdowns disappear over time. They learn to tell someone no, to be more independent, and build relationships in ways that honor and support their needs & desires. My families are very happy with the learning that happens in our room, sometimes the first big progress that a student has made. My students and families trust me, which is even more important.

And this doesn’t happen in spite of the environment, but because of the environment.

My classroom environment respects neurodiversity. My classroom expectations respect neurodiversity.

Whenever we set an expectation in my classroom, I ask myself: but why is this the expectation? When we choose a skill to target for instruction: but why are we selecting this skill? I don’t just accept my first answer, but dive deep into it. Where did this expectation come from? Is it necessary for safety? Is it necessary for learning? Is there an alternate way?

Let’s take a look at wearing shoes in the classroom. Why do we insist on this? Is it because this is what we are familiar with? This is what the neurotypical students do? What reason would we have for pushing shoes all day? Is it necessary for safety? No. Students put their shoes on to leave the classroom. They put their shoes on for the playground. But in the classroom, it is not necessary to wear shoes in order to be safe. Is it necessary for learning? No, and I would argue that it is actually counterproductive to learning. If you’ve ever had an unmet sensory need, you would know what I mean. It can be one of the most distressing and distracting experiences, causing pain and discomfort for the entire time that it is unmet. I want my students to learn. This means meeting their sensory needs.

Similarly, with large groups — why do we believe that students can only learn or learn best when seated together in a group at the table or the carpet? Can the student hear my instruction when they are pacing behind our group? Almost certainly, and possibly better than they can when seated. Can they add to the conversation or take their turn with the materials even though they had to leave for several minutes and then return?

I don’t insist on greetings and closings when entering and leaving the classroom, much less eye contact. I make sure that I greet each of my arriving students with warmth and affection in a way that works for their personalities and needs. But they don’t have to return that greeting. They don’t have to look me in the eye. They don’t have to say hello or good morning or good-bye. Once again — is it necessary for me to insist they greet us? Does it have to look a certain way? What purpose does that serve? Why do we do it? If the answer is, in any shape or form, “because that’s what neurotypical children do”, then we need to step back and ask ourselves if that’s enough for something to be necessary. It usually isn’t. Instead, we can create a classroom environment that allows for and recognizes a much wider display of “what something looks like”. We can recognize as valid and beautiful the many different forms there are to acknowledge someone’s presence (e.g., what a greeting is). We can recognize that some days, students may need time and space upon entering the room. We can recognize that people move through the world differently. It’s not only okay, but beautiful and essential.

It’s not that I don’t hold high expectations for my students. We engage in real reading, real work with letters, and real writing. We learn about numbers, geometry, and measurement. We explore patterns. We do science experiments. We create art. We participate in teacher-directed activities. We work really hard every single moment of the day on speaking and listening. We are safe with our bodies and our friends.

It’s that I recognize that our world is better when our world recognizes that validity and importance of different ways of being in the world. And that is why we do as well as we do.

 

This is part one in a series on selecting what’s important in our special education classrooms. Future posts will feature conversation on play, selecting target goals, and teaching social skills as a form of code-switching.

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.