Behavior as a Stress Reaction

image of a child completely tucked into an orange body sock, no head or arm or leg visible.
student response to looking at their daily schedule

Summer is coming to an end, which means that all of my preschool babies are getting tired. It’s a long school year when you’re 3 or 4 years old. They are so absolutely ready to swim and splash and have their days in the sun. Add transitions and life events and medical issues, and there’s been some visible signs of stress showing up in our day-to-day routines. Work avoidance. Difficulty sharing. Words that won’t come out right. And a million other little ways that they say: “I am done. D. O. N. E. Done.”

I myself have been under a larger amount of stress than is typical this year. I’ve been sick. I’ve had surgery. I’ve had a larger caseload than typical. Graduate school. Financial stress due to those medical bills and graduate school. One child leaving elementary school, one child in her last year of middle school.

My family sees the impacts.

Conversations of more than 3-4 exchanges — not happening. It’s not just that I cannot participate, but I don’t even want to be around them. It’s too much at once. I have reverted to having the vast majority of my longer conversations with my husband via text message, even when we are in the same room. Sensory input that I could typically ignore, like someone patting their legs or singing under their breath sounds like it’s on volume 200. I’ve eaten the same food for dinner for 4-5 nights in a row. My screen time? Way up!

There’s a couple of take-aways… It would be really easy to see me walking away from a conversation or asking people to stop talking as being mean or rude. At best, someone might think I’m lacking some skill or another. Maybe they would see my screen time use and think that I’m a disengaged parent. Basically: there’s a lot of judgements that people could make, and none of them would be right.

Because — none of the above. It’s a stress response. My tank is full. My tank is over-filling. All the neurons and skills that I had for coping with life’s bumps (such as too much sensory input) in more “acceptable” ways are gone. And so I revert to this. Younger children or people under more stress may revert to other things: hitting, screaming, scratching, falling on the floor, and so on.

The other piece: this happens at home. It doesn’t happen during my school day. It doesn’t happen when I’m in a super important meeting with a parent. It happens at home. That doesn’t mean that I’m “doing it on purpose” or that I could just pull it together. And how many times have we thought or said something like that? But the space we have for coping skills is always in flux, sometimes more, sometimes less. And sometimes we choose to use up more of our skills in one place, knowing our safe place will be there for us when our tank is empty.

I get that this is easy to forget. It’s not exactly something our culture prioritizes. But doesn’t it make all the difference?

I think of a student who may disembark the bus screaming. If we focus on “quiet mouth” (ugh!), what do we miss? What if they’re simply hungry and have no way to tell us? What about the student who falls on the floor every time someone comes near them? Do we just enter their space anyways? What if their sensory system is so on fire that the possibility of any sort of imminent touch is sending signals of pain through their body? We are so much better able to support these students if we look to minimize their stressors and support their over-flowing systems.

It comes down to this — can we just remember that our kids are doing the best that they can? Because I think that would change everything else we do, from the tones that we use to the plans that we make.

My own safe space is home. I see in my family the kind of classroom that I want to have. I see in my husband the kind of teacher that I want to be.

Flexible.

Kind.

Accommodating.

And always, always recognizing that I am doing my best.

Can’t we give our kids that same benefit of the doubt?

Things We Can Retire: “Developmental age”

First and foremost, let’s remember that words matter. It’s not semantics. Words set the foundation for how people view our children. They create a framework of expectations and support services. They need to be carefully chosen, words selected to affirm and uplift individual’s humanity and right to respect. It’s why we don’t use the r-word and why the autistic community chooses identity-first language. Words matter.

One of the phrases that has been popping up in my life a lot recently has been “developmental age” — as in “my child is developmentally X months / years old”. It’s usually an age significantly below their chronological one. Other versions are “caring for my child is like caring for an infant” or “my child is really a toddler”.

Oh, parents and teachers, can we please agree to stop this? It’s not helpful, at best, and limiting at its worst. And inaccurate — so, so inaccurate.

It’s not helpful. After all, what does “developmentally two” even tell us? I see this pop up in lots of groups when asking for advice — “My student is developmentally two, what do I do about (AAC / work activity / behavior)?” Except that hasn’t really told us anything… What does the student like? Dislike? What assistive technology are they already accessing? What are their visual and sensory support needs? What comes easily for them? What is more challenging? Our evaluations, our present levels of performance, our conversations about our kids all need to get a lot more specific (at least in private… I understand keeping things pretty generic in public forums).

It’s inaccurate AND limiting. Here’s the bottom line: we don’t know what these students know. The students who have these phrases thrown around about them are the students who are the most challenging to accurately assess. They may have complex communication needs, significant apraxia, difficulties with sensory regulation, all of the above, or something else entirely. At best, our assessments may tell us the minimum that they know. For example, if a student shows that they can identify 5 letters, we now know they can identify at least 5 letters. We don’t know that they don’t have the knowledge of the other 21 letters. There are dozens of reasons why they may not have been able to demonstrate their knowledge. This is especially important for professionals, who need to be clear about the limitations of these assessments instead of presenting them as the end-all, be-all. When we use these tools to set up boxes like “developmentally two”, then we create preconceptions and limit access. We limit access to real literacy instruction, because “two year olds can’t learn to read yet”! They’re “not ready”! We limit access to general education classes and peers. We have medical professionals that won’t hear a child’s complaints about pain, because it’s written off due to their “developmental age”. We limit their exploration of new activities and adventures, whether it’s a 10th grade science experiment or going to a Nicki Minaj concert. We cannot keep doing this to our students. They deserve access to the entire world, to all the things that every other child and adult access.

It’s not respectful. Oh, friends, think about this deeply… Would you want someone to refer to you as an infant, toddler, child, a pre-teen, long after you left those years? I personally love to watch Hannah Montana and Lizzie McGuire. I saw Moana and Frozen in theaters multiple times. There have been plenty of times that I needed help with a zipper or a fastener or a total meltdown. I need reminders that it’s time to take a shower. One of my favorite ways to calm my body is to swing on the playground. It is an almost irresistible temptation to be next to the swings every day on the playground, actually. But, because I can speak, because I can demonstrate academic knowledge in a way the world has deemed acceptable, no one would think to call me a child. Our kids deserve the same respect. They can like what they like. They can need what they need. That doesn’t change the need for respect; our language needs to reflect that respect. Our kids’ age is simply their age. A teen is a teen is a teen.

We’ve lived this in our family. We’ve lived our 3rd grade daughter being taught Pete The Cat for the fifth or sixth year in a row, because her school team limited her. Or when she changed schools and they decided that clipping clothespins onto a box was even better, because she was a “pre-learner” (another version of developmental age, except somehow even worse). We’ve lived people thinking she shouldn’t say she hates school or us, because OMG, she’s such a precious sweet angel, a toddler in a taller body. We’ve also lived her pain and frustration  (and boredom!) over it. Indeed –it’s amazing how much more engaged and chatty — how much happier — she became with professionals that saw her, just her, no limits, no ages, no prerequisites required. Her current teacher talks about ecosystems and the solar system and the American revolution. Her occupational therapist celebrates her interests while challenging her and targeting written expression and continually raising the bar. Her vision therapist tried hard to convince her school team to work on literacy and number skills. These are the people who get to see all of her, who fall in love with her, who get her. I want more of those people.

So, yes, let’s retire this phrase. Let’s do better by the children and adults that we so deeply love and care for. Teachers and other professionals need to especially listen up, because we set the tone for speaking about disability at every eligibility or well-child check-up. We are why parents use these words. They hear them over and over over, from doctors and psychologists and school evaluation teams. They are cemented. We are the ones who are creating these artificial limits, making parents think that literacy and number sense and autonomous communication are pipe dreams. Except they are only pipe dreams when we don’t provide the services (due to the false limits we’ve set). See the feedback loop we’ve created?

We can break the loop. We can lead the change. It starts with our language, and continues with our practice. Let’s not limit kids with our words, and let’s not limit them with their access. We can do better. Let’s do it.

 

We don’t need to get physical.

white background with black text reading "no means no"... the o is a red "not" sign.
Bear with me, because what I am about to say cause you to feel defensive or want to click away. Please keep reading.

We overuse physical prompts and support in special education, and we are setting up our students to be hurt in their lives.

Whatttttt? Hurt?

Yes. Hurt.

One in three children who receive special education services are victims of neglect, physical abuse, or sexual abuse — compared to one in 10 non-disabled peers. They are 3.44 times more likely to be the victim of abuse compared to children without disabilities (Sullivan & Knutson, 2000). 3.44 times! And it is likely that these are underestimates, as children with disabilities may have difficulty reporting (or having their reports believed).

How does physical prompting play into this?

We are teaching our students that it is okay for someone to manipulate their body. We often teach something even more significant — that they cannot say no. When they fall on the floor and we force them up, we are teaching them that they cannot say no. When we force their hands under the running water in the sink, we are teaching them that they cannot say no. When they say “cookie” but we make them say “eat”, we are teaching them that they cannot say no and that their voice doesn’t matter.

I know it’s not the intention. But it is the impact.

I get it. I’ve made this mistake in the past. I’ve had moments that make me cringe as I’ve grown and matured in my understanding of teaching and supporting the kids I so adore. We think that we’re helping. We’re taught this in graduate school. We’re taught this by our children’s therapists. We didn’t know.

Now we do — and now we can do better.

It is possible, I promise. I teach ten preschoolers with disabilities every day with minimal physical prompting. I parent two children with disabilities every day with minimal physical prompting. It’s a journey, but it’s a journey that is absolutely worth it as you teach some of the most important life lessons: autonomy and consent.

How do we start?

Start by noticing. Notice the little ways that you use touch throughout the day. Notice when your child or student might be pulling away. Notice when you accidentally speak over instead of working with. It’s not about shame. It’s about mindfulness. It’s about noticing the ways that we, too, have been indoctrinated by a culture that expects compliance from children (and especially from children with disabilities). Notice when your hands begin to move before your brain even notices.

And then start to do things differently. Below are some steps to moving away from physical prompts and towards a different way of interacting. Your children and students will appreciate the respect for their individuality. They will thrive on having their voice heard and recognized. And you will uncover so much more learning, so much more personality, so much more of THEM when you take the chance to step back. I think you’ll like the change.

Ask yourself: what is this child communicating to me?

  • This is too easy / hard / boring.
  • I am not ready / I need more time / I need a break from this.
  • I don’t understand the expectation.
  • I don’t feel well.

When we find the same scenario popping up multiple times a day or week, we need to do some problem solving with the child or student. We can often minimize the need for prompting when we determine what the child is communicating through their actions, whether it’s disengaging from an activity or refusing a transition. There’s always a reason. When we address the reason, we often find that our students no longer need to complain or protest with their bodies.

Ask yourself: is this necessary?

It’s amazing how many times we think we need to do more — but we don’t. I think here about the student who has exercised their right to protest by laying on the floor instead of transitioning. The instinct by most is to pick this student up and force them to walk to the next location. But why? Are they being hurt? Are they hurting someone else? Is there absolutely no way to create safety by relocating peers / furniture / adults? That is the only time where I find it absolutely necessary to intervene in some sort of physical way (such as blocking a student from hitting themselves in the head). There’s a dozen other ways to respond — first and foremost, wait.

Yep, wait. We can wait for our students to re-regulate, offering supports or strategies for regulation when appropriate. We can make sure we stay regulated! And then address the situation together. Maybe we use one of the strategies below. Maybe we all just needed to offer more time to regulate. Maybe we can talk through it together when we are both calm and regulated, such as reminding a student that we take the bus to see mama.

Offer choices.

We all want choices in our lives. We all want to feel in control. There’s a difference between a lunch someone orders for you, and a lunch that you choose for yourself. Going to a party because you want to, or because someone else dragged you. Think of all the choices that you make on a daily basis. Think about the number of real, meaningful choices that your students or child gets to make on a daily basis. It’s often pretty insignificant. We need to offer more choices all day long. But we especially need to offer more choices before activities that have frequently served as triggers in the past.

An example: I once had a student who disliked the transition to the bus. It’s a hard transition. There’s a lot happening, and the bus ride can feel very long when all you want is your mama. We’ve struggled with making it out the door in the past. We didn’t really know what to do. We didn’t want to force him through the door, even if it was just through an adult holding each hand. It’s a bit much. But we also know that he needed to be on the bus and that, for once, there was a time limit. We can’t wait for the bus for 45 minutes. You’d be amazed at the simple solution that made all the difference: asking this student if he would like to wear his backpack, carry his backpack, or have help with his backpack. This small choice gave him a sense of control. It also meant that he could tell us what his sensory system could handle each day. Some days the feel of the heavy backpack helped him feel grounded. Other days, it was just too much. That tiny change has meant no tears and eagerly hurrying to get to the bus (and eventually mama).

Moral of the story: notice where you can offer choices, instead of telling what to do, how to do, when to do. Don’t be afraid about sharing control with your students. It’s often one of those antithetical ideas: the more you give away, the more you have.

Use other prompts.

There is a whole TON of other prompts available for teaching. We can use facial expressions, such as the “expectant waiting” face. We can talk to students. We can ask questions. We can give directions. We can show pictures. We can use video. We can point to different elements. We can use pointers and lasers and visual cover-ups. We can do it ourselves while they watch. We can start the process and then hand it over to them. Basically: don’t forget about all the other prompts that are available to you. Physical prompting is fast and it is easy, but that doesn’t mean it’s best. It’s rarely best.

Use assistive technology.

We are so lucky to live and teach in the 21st century. There are so many ways to accommodate our students. The one that most often comes to mind is the use of visual supports. We can use visuals to show each step of the process to complete an activity. We can use visuals to tell students what is happening, when it is happening, and where it is happening. We can use video to capture students doing the task, or showing their peers doing the task.

We can also use accommodations to create alternatives to the task, or modifying the task in some way. If a student regularly needs physical prompting to pull up their pants, maybe a different style of pants is going to allow them to be independent. If a student has difficulty locating a button on their talker, maybe a keyguard or even just a little sticker on the screen protector will guide them. If a student cannot touch one item at a time to count with cars and blocks, maybe they practice their counting with touch screens or focus on subitizing. This is an opportunity for endless creativity — and teamwork. Call on your instructional assistants, assistive tech teams, and related service providers! It’s amazing what we can come up with when we work together.

Emphasize consent. 

Always, always remember that a student has a right to say no.

There are still times when we use physical prompting in our class, primarily when teaching a new motor skill. Please remember that many — most — students do not need that physical support even with these skills. But some students struggle significantly with apraxia or other motor difficulties that benefit from some support. I think about my daughter, who benefits from physical support to find words on her talker the first few times she tries them. She cannot see the words very clearly, nor can she see our modeling. She needs us to show her.

But we do so cautiously. We ask — “Can I help you?” Yes, I literally ask my daughter this. I ask my students this. I give them the chance to give consent, or to say no. Even if they cannot verbalize consent, I hold my hand out without grabbing them. Do they put their hand on mine? Do they pull away? And they always should be allowed to pull away.

If they agree to have support, then I offer that support by hand-under-hand. It’s less intrusive, because they can more easily pull away at any moment. Because that’s the thing about consent — it’s an ongoing process. It’s not one and done. By placing my hand under theirs, it is easy for them to pull up and away. It is easy for them to decide to hit a different button on their talker. And they always should be allowed to.

(I know I sound like a skipping CD, stuck on repeat. But it’s a lesson that simply isn’t emphasized enough for our kids, and one that needs to be drilled into our heads. They are allowed to say no. They are allowed to refuse. They are allowed to pull away, walk away, however they convey the idea of NO. They are allowed to say no.)

I think of it as if I was taking lessons to swing a golf club. The trainer may assist me by providing physical support to feel what a swing should be. But notice: the trainer is going to ask me if they can support me. And if I decide, mid-swing, this isn’t working for me and walk away — they are going to let me. The trainer is not going to chase me around the golf course, trying to grab my hands and arms. It sounds ridiculous, yet so often we do exactly that.

Really, though, that’s what it comes down to… How would we want to be taught? What would we want for our own children, or for ourselves? We are caretakers of our children and our student’s trust. We must continuously live up to that. This is one of the most important ways.

 

 

Sullivan, P. & Knutson, J. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24 (10), 1257-1273.

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.

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.

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.