Being A Good Communication Partner

image of a communication device screen with a message in the bar: "want stop tickle me tickle me"

Over the years, I’ve come to believe that changing our behavior is one of the most critical ways we support our emergent communicators. I’ve seen it happen more times than I can count… A child communicates successfully in one environment, only to struggle in another. A student has back-and-forth conversations with one staff member, but says nothing to another. We are quick to blame the student or — worse — to not believe the student, their family, or their staff about that student’s previous success. But when do we look at ourselves? What could we be doing that leads to this shut down, this quieting?

In the field of supporting people’s communication, we tend to hear a lot about “creating communication opportunities” and “engineering the environment”. The role of the communication partner is often seen as someone who blocks access to items in some way, and then prompts the student to request or comment about that item.

This is not being a great communication partner. For starters, few people would like to live a life in which access to everything we love came through gatekeepers. It is not fair. It is not respectful. It also doesn’t teach voice. Instead, it teaches that you can perform this specific action to say exactly what I want and get the item that I’ve selected. On top of this, it creates pressure and demand, two things that frequently make it more difficult for our students to access their language or motor skills.

I believe in our students. They have so much to say. And, most importantly, they have a right to say what they want, when they want, how they want. If you’ve made this mistake, if you weren’t taught to center autonomy, there’s still time to change.

Start by believing your students. This is not just the first rule, but it is the hands-down most important rule. When your students say something, that is their voice. Believe that they are saying something. Respond accordingly. Do not say, “I don’t think he meant that.” Do not say “she’s just playing around.” Do not ignore, walk away, pretend it didn’t happen. If there might be a mis-hit, because we all mis-speak sometimes — wait and see. Or ask — just don’t assume. Conversation is an art of co-creation, and we must respect our students as that co-creator. Even with our earliest and youngest communicators, who may babble and explore as they learn where words are… They benefit from us responding to their words. They learn the meaning and context of those words by hearing our response.

In my Spanish lessons, if I say the wrong word for what I mean, my teacher still responds. She works with me to figure it out. This is the basic building block of seeing me as a competent communicator, as someone who will be a fluent Spanish speaker one day. This is also why I keep trying. No shame. Our kids know whether we believe they have voice and autonomy, if we believe that they can be fluent communicators. They know whether it’s worth the effort. They also know when they will be doubted, misheard, misunderstood, and disbelieved. And they stop talking. If a student is not using their communication system in your environment, but used it elsewhere… Ask: What can I do differently? What did they do to support them? Do not just write it off as an exaggeration or that it did not happen. (That was a really, really long paragraph. But I cannot overstate this as a key difference between environments where kids are successful, and environments where they are not.)

Give plenty of wait time. Oh my gosh, guys, can we please just slow down? Have you tried to use a communication device to express your thoughts? Even when very familiar, it can take time. Auditory processing, anxiety, apraxia… There are a dozen reasons why our students need time, and zero reasons why we shouldn’t give it. Stop asking question after question. Stop assuming they can’t do it if it can’t be done within 5 seconds or 10 seconds. Stop assuming they can’t do it if it can’t be done on demand. Learn to observe. Watch for communication all day long. Comment, ask your question, or perform your action — and wait. Wait 15 seconds. Wait 30 seconds. Wait 2 minutes. Observe your student to see what their wait time is, and then wait. Count in your head if you need to. Learn to be okay with silence. Ask or observe if they prefer your attention — eagerly watching and directing your gaze to them — or if they prefer you to turn away, continue with an activity, or come back to them in a few minutes. There are a wide variety of needs. Our students will tell us what theirs are, if we’re listening.

Stop asking so many questions; comment and wonder. Think about the conversations you have with your friends, your loved ones, or even your speaking students. We comment. We draw attention. We describe our feelings, or theirs. We typically don’t engage in 20 questions every time we converse with our friends. Why do we do this when someone is nonspeaking? Why do we pepper them with questions? Why do we relegate them to the role of respondent, and never initiate? We can do the same with our AAC users. We can comment on their actions — describe what they are doing, describe our own actions, share our feelings, connect their words or actions to something else we know. If you don’t know, try wondering. Try offering choices. This allows you to be equal communication partners, but it also can decrease the anxiety and difficulty responding as the demand drops significantly. Students can respond when they are able and want to, instead of feeling pressured to respond when we want them to.

There are so many more ways to converse that don’t involve questions. Examples of adult commentary that pepper our snack times (not all at once), with key words highlighted: You look hungry. You have an apple for lunch. I love to have apples. I ate an apple last night. I wonder if you want your apple whole or cut. I wonder if you want your banana or apple first. Oh, it looks like you want the banana. I wonder if you need help to open that. Let me know if you need help. Your friend has a banana too! I had so much fun building with you before lunch. I wonder if we should build more or play music after lunch. You looked happy when you were building. I wonder what we could tell your mom about your building… It looked tall and red.

All the words, all the time, for all the reasons. This is just a reminder that our students need so much more than a few nouns. They need action words, describing words, complaints! They need to tell us how they feel, where they hurt, what they did last weekend. Even if they are not yet doing that now, they need to be able to grow into that. When we say “core words are too hard” and then don’t include them — we are creating a self-fulfilling prophecy. Every student has a right to as many words as they can access. They have a right to have those words available everywhere they go. And they need us to be modeling all of those words. We cannot just model requests or happy words. We should model “this sucks” and “I hate this” and “leave me alone”. We should model “stop” and “help” and “need” and “tell” and all kinds of words. We can model what it looks like to comment, to protest, to ask questions. (Yes, our students should be able to question us for once!) Communication autonomy cannot happen without access to lots of words (and a keyboard!) Too many times students have stopped using their communication systems or shown low interest simply because they could not say what they want to say. My students’ first words have been everything from “mad” and “stop bugging me” and “play” to “train” and “fruit snacks” and “hungry”. All the words.

Respect the power of their voice. This is honestly a repeat of the first one, but, yes, it’s that important. If our kids use their voice to tell us to stop, then we need to stop. If they tell us they need a break, then we need to give a break. We can compromise, we can negotiate, but we must listen. The quickest way to get a student to shut down is to act as if we do not care. My daughter once was asked if she liked a book. She clearly said “no” with both her voice and her body (tapping a “no” button). The teacher took her hand and said, “Yes, you do like it”. My daughter learned so many things that day. She learned that her opinion was both wrong and didn’t matter. She learned that other people could put words in her mouth and manipulate her body. She learned that it was not worth the effort. When I saw that video, I was no longer surprised that my daughter did not use her communication device in that class. Because why should she?

Go with the ebb and flow of communication. Communication growth spurts come and go. There are times when our students may be chatterboxes, and other times when they go silent. My daughter may not use her communication device for 3 months, but then use it to talk to me back and forth for 25 minutes. It could mean that she’s focusing her energy somewhere else. It could mean anxiety or illness or sensory processing or even just a temporary change in preference of communication form. It doesn’t mean everything is lost. It doesn’t mean that we stop doing any of the above things. It means that we are patient, that we stay with them, and that we respect whatever communication form they are able to access in those times.

Let’s commit to being better communication partners — though the highs and the lows. Let’s show our students that their voices matter to us. We want to hear them. Them. Not us. Not what we think should be said or done. But their truest voice. Because the world needs that voice. We need that voice. And they absolutely have a right to that voice.

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.

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.