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.

Dear teachers, we can do better.

I have had some heart-breaking meetings and phone calls with families. They almost always involve sharing experiences that they find normal, but completely wrench me open.

Example: Families surprised by compliments and celebrations of their child.

Oh, teachers and staff members, think about what you say before you say it. Think about what message you are giving to the children you serve when criticism is followed by criticism by another criticism. Please, please, please start sharing more of the good with families. Even more important: start sharing it with your students. No one should ever be surprised that there is good news. It can be small, it can be big, it can be anything, but it’s there. Tell them about the gifts and talents you see, about their hard work, about the gains they make each week. And I promise: every single child has them. Every single one.

Example: Families surprised by staff who speak directly to their child.

When you meet a child for the first time, say hello to them. When you ask “how are you?” and “what do you like?”, say it too them. Do they use an alternative communication system? You can still speak to them. Do they not have a communication system yet? You can still speak to them. How hard is it to say, “Good morning! I hope that you had a wonderful weekend!” directly to a child? It’s not. How hard is it to say, “You seem so sad. I’m sorry you’re having a hard time” directly to a child? It’s not. Do it.

Example: Families excited by discovering that all kids participate in class photographs, graduation, school plays, field days, music concerts, or electives. 

This is their school too. Special education students are not guests. They are community members. It shouldn’t be a fight to gain access to these things. They should be so automatic that no one would ever think of it being any other way. I get that there is a spectrum of options, that least restrictive environment means a lot of things. I have a son that has advocated for himself to have more or less time in a self-contained environment over the years. But his school has always, always ensured that he was in every PTA concert, that he was in every field day, that his picture was always with his general education classmates in the yearbook, that he was seen as a member of that community. When life was hard, that sense of belonging meant everything to him (and to us). It matters. Oh, how it matters.

Folx — these things should be foundational to our practice. These shouldn’t be things that families move across districts and states to find. These aren’t things that are hard to do, but they mean everything. They mean everything to the students we teach, who deserve respect and access to a robust education. They mean everything to their families, who need to see all that is possible. And they can mean everything for us, as we see our practice, our schools, and our communities transform to become places where all children are seen, welcomed, and celebrated.

We can do better.

Behavior as a Stress Reaction

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

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

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

My family sees the impacts.

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

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

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

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

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

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

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

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

Flexible.

Kind.

Accommodating.

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

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

Things We Can Retire: “Developmental age”

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

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

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

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

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

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

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

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

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

 

What is play?

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

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

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

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

Lining up trains is play.

Stacking and knocking down blocks repeatedly is play.

Waving a ribbon is play.

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

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

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

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

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

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

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

 

 

 

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

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.

Selecting skills: But why does it matter?

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

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

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

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

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

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

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

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

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

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

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

 

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