Why We Quit ABA, Part 2

For more stories, including autistic voices that must be heard, check here.

You can read part one of our story here.

When we quit ABA, it wasn’t just my daughter that quit ABA. I am a special education teacher in my fifteenth year of supporting autistic individuals. When you serve autistic students, there is a certain amount of pressure to pursue a BCBA. It’s not always formal pressure, though some districts are increasingly requiring it. It can come informally, through meetings where BCBAs discount your professional opinion or through the knowledge that parents in your communities are seeking out those initials. 

Because of that pressure, I started (and stopped) the coursework towards my BCBA twice. The first time, I made it through one class. I am not even sure if I took the final exam, or if I just took the W. The second time, I made it through three. I wanted to know the terms and the practices and the terminology that are being quoted as the best thing for my daughter and my students. I wanted to read the research for myself. 

I still quit. Two different programs. Permanently.

There are tools that are used within ABA that many really good teachers use — and probably used long before Skinner ever came along. For example, breaking things down into smaller pieces can be really helpful in determining where a learning breakdown is happening. Or “shaping”, where we celebrate kids’ good attempts at something long before they are perfect.

But I found that it was impossible to separate these tools from the culture. It was impossible to separate task analysis from a heavy reliance on physical prompting. It was impossible to separate shaping from an emphasis on verbal communication. It was impossible to ignore the research that included forced feeding programs, elimination of vocal stims, or provision of limited communication systems to students. It was heart-wrenching to be in classes with professors and people who likely thought the JRC was a good thing. It was impossible to ever choose presence with students over quantitative data. It was impossible to ignore the compliance-oriented research and strategies.

And it is pervasive. This harmful, harmful idea that autistic students cannot learn outside of this one way is pervasive.There is plenty of behavior modification talk in special education programs. There are still plenty of special education textbooks that write about discrete trial as the way to teach literacyThis pervasiveness is why I write — not just about quitting, but everything I write. To break down these harmful ways of thinking and teaching. To do better.

Three semesters of coursework on ABA specifically with autistic students, and how many times did I read about autism from the words of autistic people? Zero.

Three semesters and how much did we learn about AAC? One week, and limited to PECS.

Three semesters and how much did we talk about accommodating sensory needs? Zero.

These things are important to me. These things are what make me the teacher I am today. These are the things that I want my child’s teachers to know — what her experience of the world is like, how to support her communication, how to meet her sensory needs. These things are what make my classroom successful and my students happy to be there. 

This is why I write so much about the culture of our classrooms, because that’s what comes first. We need to know who we are as teachers, who we want to be.

I want to be a teacher who explores concepts with my students. I want to be a teacher that expands their schema and understanding of the world. I want them to learn about mud puddles and the way friction slows a ball going down a ramp. I want to immerse them in literature and letters and writing. I want my students to build deep understandings of number sense. I want their vocabulary to be built through rich sensory experiences, not time at the table, not pictures. I want them to fall in love with learning. 

These things are not easily measured. I won’t be able to create a list of 1,000 pictures that my students can name when asked (and I’m okay with that). These things are not taught by reading sight words or repeating math facts until we reach a set level of fluency. But these are the things I want to spend my time and money studying. I want to study how I can be a better communication partner to my students. I want to study what a literacy block can look like for my emergent literacy students, what accommodations and strategies will help them when they enter elementary school. I want to experiment with what sinks, what floats, and why we think that happens. I want to make messes. I want my time to be so fully immersed in being with my students, not in sitting behind a desk and graphing. 

I want to be a teacher who gives my students an education

It’s not easy to quit ABA. I mean, it’s super easy to quit in that my classes were against everything I stand for and frequently made me shake my fist at the sky. But it’s not easy to take the leap against something the whole world pushes. There is a fear that one day, I will no longer be allowed to teach my students. There is a fear that families will think our classroom is not good enough. 

I have thought long and hard about how I would respond to this fear. I believe in my students. I believe they are smart and capable and funny and talented. I believe that they have the same right to a full, well-rounded education as any other person that walks through the doors of school. Because, I promise you, if you give us the chance, you will not regret it. 

Why We Quit ABA, Pt. 1

I’ve mulled over writing this post for a while. There are so many voices out there who have better spoken about the challenges of ABA therapy. The voices that should be the loudest are #actuallyautistic individuals who have lived through ABA therapy and are begging us to listen.

They aren’t being heard enough. So I write, in hopes of bolstering and supporting their words. I write at the unique position of being a professional who has been pressured to pursue my BCBA, and as a mom to a child who has been pressured to enroll her in ABA.

(And go read from this list. Seriously. So much important stuff.)

I’ll start with my daughter’s story. She has unfortunately experienced ABA therapy twice in her life, and it is a deep regret. They are my mistakes, ones I own and can never fully make up for, though I try. Her first experience was in a private school placement. We had found out that she had not been safe in school. We advocated fiercely for a transfer within the public school system, but were rapidly running out of time and options. We chose the private school that, at the time, was least committed to doing things the “ABA way” with her. Or so it seemed. We ended up fighting to bring her back to public school. (Happy ending, at least: she is now with a teacher that is about as far from ABA as you can get… and having the best education she’s ever received.)

Her second experience was when she was 12 — and in pain. She was in so much pain and expressed her distress through her actions. I am not going to get into all of that, because it’s her story to tell. My story is about how we went to multiple doctors at multiple places. The recommendation, again and again, was ABA. I knew in my heart that ABA was not right for us. We had lived this before. We saw that it was not a match. We knew knew ABA would not solve this problem. I knew that she was in pain and that we needed to find the answer. After over a year of searching, it felt like doctors would not even look until we enrolled her in ABA therapy. We reluctantly enrolled her after asking for numerous recommendations for an agency that would focus on her communication device, participating in her daily life routines, and respond to our boundaries and feedback. We honestly hoped that we were going to get one of those places that doesn’t really do ABA but bills as ABA**. Except we didn’t. (Another happy ending: we found an amazing medical team, got appropriate treatment, and know they will always listen to her pain.)

We lasted not even 2 months before quitting.

We rarely saw the BCBA. When you go to therapy for anxiety, you see the licensed counselor. They provide direct services. When you’re in a special education classroom, the special education teacher is in that room supervising every single day. They know your child. But within ABA, the person that designs the instruction, makes the rules, determines what and how to teach? They may see your child less than 5% of their service hours. When she received in-home therapy, the BCBA met her one time. Once! In six weeks! That is a travesty and it happens way more frequently than most agencies are willing to admit. Instead, the person serving her may have little to no experience in education, psychology, learning, disability studies, or anything related. They may receive minimal training and support. And yet, here they are, getting all the funding and all the attention.

ABA is built on the prerequisite model. ABA therapy is built around breaking big tasks into smaller pieces. This alone would not be problematic. Breaking things down can be helpful. The problem lies in what we break down, how we teach it, and how we move on from it. For too many of the children in my life, “how we move on” has meant never. Arbitrary and meaningless “mastery criterion” kept my daughter listed as a “pre-learner”. The insistence on keeping a list of words that can be performed on command for 80% of opportunities across 3 people and 3 settings prevents students with apraxia, anxiety, or just a desire for communicative autonomy from having their voices heard. The inability to break down some concepts into easily measured discrete pieces prevents some children from ever accessing them (e.g., non-speaking students and true literacy instruction). ABA therapy was unwilling to address any of the goals that we had for our daughter, because they felt they had too many prerequisites to teach first. Prerequisites that we told them she already had. Prerequisites that were sometimes completely disconnected.

New ABA is old ABA. Knowing what we know, we set a lot of rules around in-home ABA therapy and supervised every session. We emphasized in every phone call that our focus as on meaningul activities connected to every day life and expanding my daughter’s use of her talker through modeling. The moment I broke was when I sat and watched an ABA therapist say to my daughter, “Hi Jane, what’s your name?” and then prompt her to say “Jane” on her talker. She had literally just said her name. They proceeded to repeat this several times in a row. I interrupted it before it could go on any longer. This moment just epitomizes everything for me. It showcases exactly what the therapists, BCBA, and system think of my daughter. To say her name to her face and then ask her what her name is… To ask that question in repetition… I offered advice, such as talking to my daughter about why being able to answer her name is important, talking to her about practicing & role play, and so on… Rather than take any of that advice, they just stopped working on anything with her device (see below, re: ABA is the only way.)

ABA still wants to control what my daughter loves. The moment that my husband broke was when they asked us if we could take my daughter’s iPad and iPod away for a hour before they came, so that these tools would be more powerful for them. We refused. They pushed. We refused. For starters, no, I am not going to take things my daughter loves away from her so that you can use them to manipulate her. Second, my daughter has physical disabilities in addition to being autistic. Taking away her iPad and iPod mean taking away her leisure activities, ones that she adores partially because it’s one of the few things she can do all by herslef. Finally, if we have to remove everything a kid loves in order to get them to love us, what does it say about us? What does it say about our actions? And what kind of professional are we if we ignore this information? Her current team certainly doesn’t. She listens to music all day, with her only restraint being volume and school-friendly lyrics — and still does all of her work.

The ABA way is “the only way”. Trying to get any BCBA or ABA therapist in this child’s life to ever listen to us about AAC, vision, or motor needs has been nearly impossible. Bringing in other professionals has rarely made a difference. We’ve met ONE BCBA who truly works as part of a team. Why is this so hard for them? How has ABA taken control over every other field, from feeding to speech to anxiety to riding a bicycle? At the time, I had over a decade of experience in supporting children like my daughter. I had all the experience of being her mom and knowing her deeply that they did not have. Yet I never felt so belittled and unimportant as when they pressed the need for “parent training” — while never actually defining what this meant.

They are always there. This was my husband’s ultimate complaint. When was my daughter supposed to be able to have a life? We asked for 2-3 days of 2 hours, at most. They wanted to provide over 20 hours. They wanted her to be pulled from school to provide that 20 hours. They wanted to somehow go to her school and do more hours there, interrupting her education. They always seem to want more. Their answer to “this is not working” re: a plan or strategy — let’s do it MORE. My daughter was a 12 year old girl. She deserved more in her life than ABA therapy. She deserved swimming in the pool and chilling in her room watching YouTube and spending time with her family. She deserved a summer.

Work as an act of love, or work as an act of work. We never really connected to our ABA therapists. I know that some families really connect to the people in their home, but ours always felt like they were coming to work. I can’t understand it. I go to school every day as a teacher with fire and passion in my heart for the little ones I serve. I delight in them. I adore all their habits and quirks and big personalities. I am the first one to celebrate every success, your child’s biggest non-family cheerleader. Maybe that’s unfair, but if you’re spending 20+ hours with my daughter — it needs to be more than work.

Turnover, cancellations, and the like. Turnover in the field is high. We stayed with in home ABA therapy for six weeks. We had 2 therapists and 2 BCBAs in that time period. We were in private school for 2 years. We had 5 BCBAs, a huge chunk of time with no BCBA, and who knows how many number of instructional assistants… And cancellations by therapists for in-home therapy were high.

And they still didn’t help with “behavior”. After all of that, they didn’t even do what they came for. Her private school didn’t help problem solve her distress behaviors. They didn’t disappear until she was back in public school. Her in-home therapy team was worthless at helping to collect data to analyze for patterns in what could be triggering the distress, the data that would have helped us advocate for her with her medical team. They took frequency. They wrote down what happened directly before or after. But that’s not enough. We needed to look at sleep, eating / what she ate, weather, seizure activity, symptoms, and missing supports. We needed to model pain-related vocabulary, protesting, and complaining. 7 BCBAs in her life and not a single one did these things. Not a single one.

It would be easier not to write about this, if only over the shame I feel when I think of those choices. But it needs to be shared. I’ve been stuck in a system that feels as if there is nowhere to turn. My daughter and I have both yelled and screamed and begged to be heard, while being completely shut down. We have been bullied. (Teachers, please don’t do this to your families. Respect the decisions they make for their child’s life outside of school.) If we were able to do it again, we would home school. We would travel as far as needed to find the doctor that listens. But not everyone has that luxury. A single parent working multiple jobs doesn’t. A parent without health insurance doesn’t.

That’s why we have to continue to share. The current system has to change. The way that insurance and professionals gatekeep and dictate what is right for their clients, instead of their clients deciding what is right? That has to change. There are pitiful supports for both disabled individuals and their families, across the board. There are few doctors who listen, few school systems that include, and way too few funding for communication systems, adaptive equipment, retrofitting spaces for physical or sensory needs, personal care attendants, classroom staff supports, and so on… There is so much support and money for ABA therapy, while everything else is left behind.

This won’t change just by switching to “nice ABA”. It is only going to change when we overthrow the ableist foundation on which it’s all built — that people become more worthy as they become less visibly disabled.

People are worthy of the supports they choose now. People are worthy of accessible communities now. People are worthy of quality & affordable healthcare now. People are worthy of being seen — not just as people to support, but as people with thoughts, feelings, talents, and skills that are important to and for the world. Now. My daughter deserves real therapy when she needs it, real education always, and real support from people who love and appreciate her. Now.

And that is why we quit ABA. Forever.

Part 2 documenting my own story will be posted later this week. I’ll also share what we do at home instead. What I write about every day is what I do at school instead 🙂

** I know realize the problems inherent to people practicing something not ABA but billing as ABA. While it’s great that a child can access supports that are helping them, it makes it more difficult for others to differentiate between harmful and not harmful. The non-ABA lends credence to the ABA, as people hope that they can enroll and get basically a play therapist (as we did). It also makes it more difficult to advocate for insurance and other support networks to better fund non-ABA supports.

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

Teaching Values

As we enter a new school year, I find that it’s the perfect time to get clear on our teaching values. Teaching is inherently a political act, and I don’t mean this party versus that party. Each day we enter the classroom, we act on our values. And our values either uphold or break down systems of oppression.

There is no neutral.

To quote Elie Wiesel, “Neutrality helps the oppresser, never the victim.” Neutrality doesn’t exist. Neutrality means the current systems continue as they are. Neutrality means that the current power structures stay as they are. Neutrality means we don’t unwind all the bias that we have imbibed from our larger culture, whether intentional or not.

And so we need to get clear on who we are, what we value, and what we will implement in service of those values. We need to be clear on who we are there to serve: our students. Do we want to serve our students on autopilot? Do we want to serve them up the same systems that lead to the current outcomes, which aren’t very good for students with disabilities? Or do we want to serve them something more?

I want something more. So much more. The following five beliefs form the core of who I am as a teacher. There’s so much more that I can say. If you’re on Facebook, you’ve seen our classroom poster. I had to force myself to stop adding to it. But it all comes back to this.

Kids do well when they can. If things are not going well, then it is our job, as the adults in the room, to adapt so that things can go well. It is not the student’s job to adapt to me, to my environment, or to my needs. It is my job to adapt my teaching, to adapt my environment, to adapt my needs. It is my job to be flexible. This is why you’ll see me change the schedule, move a couch, adapt my data sheets, and a million other things throughout the year. It’s not because I love change. I hate change as much as the next person, and maybe more. But I know that it is my job to change for my students. It is my job to change so that our instructional assistants can be successful. That is the responsibility that I accepted when I entered the classroom. I take it very seriously. It also tends to be both the primary reason that my students succeed and the primary reason that outsiders dislike my room (see: “what? Why don’t they have shoes on? What is wrong with this teacher? THEY NEED TO LEARN!”, and also: my response).

Every student has value. Every single one, and that’s as they are right now. Not “when they talk” or “when they learn to read” or “when they hold a job”. They have gifts to offer right now.  I am ten thousand times over confident that the world would be worse off without the students I serve. My world would be worse off without the students I serve. I see part of my role as teaching this to my students, my families, my school community.

Everyone has something to say. All of my students have creative and funny and interesting things to say. Sometimes with words, sometimes with their bodies, sometimes through their art or curiosity. I want to amplify their voices so that everyone can hear them. I want to give them the tools they need to amplify their own voices, whether that’s access to an AAC system, increased vocabulary on that system, vocabulary instruction, or just telling people to stop and listen. Every student leaves my class knowing that their voice mattered to me.

Students have autonomy over their voices and bodies. Yes, that even means that students can tell me no. Yes, that means they can tell me to STOP and that they are MAD and even that they HATE me. A dear friend of mine has heard “we don’t say no to teachers” enough in classrooms that she has a whole blog post on how problematic it is. And it is so problematic. Our students, probably more than any other students, need to be taught that they have the right to say no. It’s abuse prevention. It’s voice amplifying. It is a fundamental human right.

Every student has the right to access rigorous curriculum. I wish that this didn’t need to be said. Yet I have spent most of the last six months defending that, yes, autistic students can learn to use core words. Yes, nonverbal students can learn to decode and comprehend what they are reading. Yes, students with language disabilities can engage in creative writing and the acts of putting written word to paper. No, a fourth grade should not be re-reading Pete the Cat as the core of their literacy work for the fifth year in a row. Whether they are served in the general education classroom, a self-contained classroom, a hospital, at home… They have the right to a robust education that teaches oral and written communication, critical thinking, problem solving, and so much more. An IEP does not mean “less”. It means more.

 

As I write on the eve of my fifteenth year serving other individuals with disabilities, this is what guides me. This is what I keep in mind when I write assistive technology evaluations, when I select IEP goals, and when I speak to parents about all the joy and beauty and honor that has come with teaching their child during the year. Because it is — it’s an honor. And one that I work hard to live up to.

 

 

The right to NOT talk.

image of an iPad screen with a grid of icons for voice output. the message bar reads: "I don't want to! Grumpy"We all have times where talking is not happening. We ignore questions. We don’t answer the phone. We flat out tell others that we don’t want to talk. Some of us have times where we simply cannot talk; I’ve had many conversations with my husband via text message. At other times, we may want to talk — just not about the subject at hand. Our partner may ask if we want hamburgers or grilled cheese for dinner, but we answer with complaints about something that happened earlier during work.

Yet, this is forgotten or completely thrown out the window when it comes to the students that we serve (and children, generally, in our compliance-driven society).

We ask students what they want (often within limits). If they begin talking about something else, then we take it as proof that they weren’t listening, that they don’t understand, or that they don’t have the ability to answer. They talk about Diego, because it’s their all-time favorite, and we say they “perseverate” or “only know one word”. They don’t use their talker on demand, and it’s written off as “inappropriate” or “not being used” or “they don’t know how to do it” or “too much”.

We need to ask ourselves: what is our goal? Is our goal for students to say what we want when they want? Or is our goal for student’s to have a voice? Because a voice means they get to say what they want when they want.

A voice means being able to talk about your passions, whether they are Diego or the alphabet or worms. A voice means being able to change the topic, interrupt, or ask for something that wasn’t on the menu.

A voice also means being able to NOT talk.

It means that I don’t have to answer your questions  — not when you want me to, and maybe not at all.

It means that I can go hours without talking, or days, or whatever, because it’s my voice and I can use it when and how I want it. I can be silent, and I won’t have people then try to take my voice away.

Autonomy isn’t autonomy if it’s only allowed at the convenience of adults and professionals in students’ lives. A voice isn’t a voice unless we grant the full range of freedom — freedom to use, but freedom to not use as well.

Silence is okay.

Silence doesn’t mean “doesn’t know”.

Silence doesn’t mean “doesn’t need”.

Silence certainly doesn’t mean “take my voice from me”.

Silence is just that — silence. And everyone has the right to it.

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.

 

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.