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.

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.

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.

 

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.

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.