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.

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.

Switch It Up: Meet Kids’ Needs to Solve “Behaviors”

We’ve had a couple of little “problem behaviors” pop up that have occurred across multiple students pop up in my class. Going into closets. Climbing on the counters. Dumping everything in the toilet. The instinct from grown-ups tends to be that whole “no means no” — repeat, day after day, ad nauseam. And we say, “Why aren’t they getting it?”

But we can look at it another way — these behaviors are the best tools that the students currently have to meet their needs. These students are telling us: I don’t yet have the skills to handle this exact situation on my own. I need supports; I need instruction. If we want the behaviors to cease, we can’t just say no. We need to create environments that support students to use the skills they have, while we teach the skills they don’t.

So that’s what we did this week.

Photo Mar 19, 2 51 48 PM (1)Situation 1: Climbing on the Counter

Above the counter are shelves — filled with all the things that we don’t allow free access to. Not because we are controlling and keep a “sanitized environment”, but things like Cheerios, Cheetos, glue, scissors… Things that just can’t be free access. They also tend to be things our preschoolers really, really want. Thus the climbing on the counter. All of our students have a way to ask for help or ask for those items. But in the moment, the impulse control, attention shift, and emerging communication skills just don’t line up for them to do so. Because they’re in preschool.

We added a Big Mac switch to the counter that says “I need help”. It’s LOUD. It’s easy — even our most emergent communicators can use it. Just leaning in to the counter as they think about climbing it often activates it, so that they can quickly learn the association. It also serves as a big visual support — a “STOP AND THINK” kind of moment. And it worked. Within just a few hours, multiple students were running to the button, asking for help, and then telling us what they need when we brought their talkers to them. Climbing fell off dramatically — and fast. So much faster than any “no means no” instruction could have done. Because we met the students need.

 

Situation #2 – Potty!

The toilet is a tempting playground. My own son went through the same phase; we hadPhoto Mar 19, 2 49 18 PM to call the plumber multiple times for all the things that were flushed down the toilet. It doesn’t matter that we have lots of sensory fun available throughout the room. It’s the TOILET. It flushes! It’s loud! It makes noise! The best way to help our students stay out of trouble is to help them stay out of the toilet.

We also have students who are just recently potty trained, who need to be able to run to the bathroom and gain access quickly. We needed to balance all of the competing needs.

Enter switch #2… It sits right above the door handle, and says “POTTY!” We can keep the door shut, because we are allowing students to have a quick and easy way to meet their need. Just like our counter switch, we positioned it for the easiest access for this particular group of kids. Like with help, they all have the ability to ask for potty on their talkers. But it’s hard. It’s new. We need a bridge until we get there, and this is it.

And once again, it works. We have students requesting the potty that I had under-estimated, that I had not been sure they were yet able to request. It’s not that I did’t think they ever could, but I wasn’t sure they were “ready yet”. But they have an awesome way of continually reminding me that “readiness” can be an arbitrary concept, one that is primarily used to limit them. Readiness is about accommodations as much as instruction. It’s about what I am doing  more than anything they are doing.

Meeting needs works. Again and again.