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.