Tag: special education

Acceptance makes responsibility possible

Real Social Skills

Sometimes disability and responsibility are seen as opposites. This is destructive, and it’s related to a taboo against acknowledging disability and ability at the same time.

Within this taboo, either we’re seen as basically just like everyone else, or we’re seen as basically unable to do anything that matters. This makes it very difficult to develop a sense of what it means to be responsible as a disabled person.

People who want us to see ourselves as capable often teach us to try and ignore our bodies, so that we can pretend that we’re really just like everyone else. This teaches us to pretend to have abilities we don’t have — and to make promises that we can’t keep. 

On the other hand, we’re often taught that being disabled means that our promises don’t count for anything. That it’s just a symbolic gesture, and that no one is ever counting on us in a real way. That everything we do is just practice, or symbolic, or someone else’s charitable attempt to include us. (Eg: a kid with a disability may be put on a baseball team nominally, expected to attend practices and games, never taught to actually play, and given the chance to hit a fake home run late in the season as a feel good event.) This can make it really, really hard to learn that it matters what we do.

There’s nothing inevitable about this. Disability doesn’t have to mean magical thinking and constant broken promises, and it doesn’t have to mean a never-ending stream of fake tasks. It can mean understanding the bodies we live in, and the minds we have. It can mean taking all of that into account when we decide what to do, and when we make promises. We can take real responsibility and do things that matter.

“I don’t want him to feel different”

Real Social Skills

I’ve encountered a lot of parents and professionals who are reluctant to talk to disabled children about their disabilities.

People often believe that children with disabilities are innocent, and that they can protect their innocence with silence. They express concerns along the lines of “I don’t want him to think something is wrong with him,” or “I don’t want her to feel different,” or “I don’t want them to feel bad about themself.”

You can’t protect disabled kids this way. They know that they are different, and they know that this difference is perceived negatively.

Some examples of how kids figure out that they are different:

  • Kids watch what other kids do.
  • Typically developing younger siblings develop skills that they still haven’t mastered and may never master. They notice. They also notice how their parents react to this.
  • Kids with disabilities often see other kids their age doing something that looks fun, try to join in, and find that they can’t keep up. They notice, and they have feelings about this.
  • They also notice when other kids think they’re weird or boring and avoid them.
  • If they go to a special education program, they notice that other kids don’t take the short bus to school (and they hear what other kids say about the short bus, or they see it in their body language.)
  • They also notice that their school is really different from schools on TV and in stories.
  • All the kids their age on TV and in stories can do things that they can’t do. They notice.
  • Disabled kids often struggle to understand something that’s clear to everyone else in the room. They notice that this happens a lot.
  • Kids with disabilities get called the r-word, or the moral equivalent. 
  • Adults expect them to do things that they can’t on a regular basis. Other kids their age can. Adults are disappointed or angry. They notice.
  • Kids notice when they have to go to therapy and other kids don’t.
  • Kids notice when doctors hold them down for painful procedures while they struggle and cry. They notice that this doesn’t happen to kids in stories and that it’s not in any of the books about being a kid.
  • They notice that they have a lot of tests and that they’re talked to in ways that other kids aren’t.
  • They are often required to follow rules that other kids don’t have to follow. They notice that, too.
  • Parents talk about how tired, scared, and overwhelmed they are by their child’s needs or navigating the systems. Kids overhear. 
  • Many kids also eventually overhear the name of their condition and google it. 
  • And any number of other things.

Your silence doesn’t protect them from any of these experiences; it just isolates them. Kids are already bearing the pain of disability and of other people’s reactions to their disability. If no one will talk to them about it, they are also very, very alone. You can’t protect their innocence; you can break the silence that isolates them.

Uncertain abilities and the right to fail

Real Social Skills

Being disabled often means being unable to reliably predict what you will and won’t be able to do. Or whether something will be hard or easy. Sometimes this is for physical reasons; sometimes it’s because of how people treat us; often it’s both.

For instance, taking a class might involve uncertainty about any or all of these things (and lots of other things that I didn’t think of):

  • Am I cognitively capable of learning the material?
  • Am I physically capable of doing everything the class requires?
  • Will anyone be willing to do the group work with me in a way that makes it possible?
  • Will I be well enough to come to class regularly?
  • Will I live long enough to get the chance to apply what I learn in the class to my work?
  • Do I have the executive functioning to do this when I’m also doing other things?
  • Will the class material be so triggering that I dissociate frequently and miss a lot of what’s going on?
  • If I miss material for disability-related reasons, will there be a way to make it up?
  • Will I be able to get into the classroom?
  • Will I be able to stay in the classroom safely?
  • Will the teacher want me there?
  • Will they get me accessible materials in a timely manner?
  • Will they teacher have the skills to figure out how to teach me?
  • Will they allowed to be flexible in the ways I need them to be?
  • Will I have to fight for what I need? Will the fight be successful?

Disability typically involves a lot of uncertainty. It means that it’s often completely unknowable whether or not you will be able to do something. This means that the risk of failure is often much higher than it is for people without disabilities. If we try new things, we’ll usually fail at more of them than people without disabilities.

Sometimes people take that to mean that we should only be allowed to do things that are definitely within our abilities, to spare us the pain of failure. Or, to spare them and us the pain of having to notice that we’re disabled and that there are things we can’t do, no matter how hard we try.

This has disastrous consequences for children in special education and adults who live in the system, who may never be allowed to attempt anything harder than preschool curriculum. And, when we’re allowed in mainstream settings, we’re often terrified that failure may mean that we’ll be kicked out and sent to segregated settings.

When we’re not allowed to fail, we’re also not allowed to succeed. Because for all people, success rests on a lot of failed attempts. And because disability typically involves uncertain abilities, we usually need to make a lot more failed attempts than nondisabled people as we figure it out. Watching our peers succeed at things we fail at can be painful. So can trying really hard and finding that something we wanted to do is not possible for us. So can finding that something is dramatically more difficult for us than anyone else we know. That pain is real; it’s also bearable. We can fail and be ok. We can bump up against our limitations and be ok. We don’t need to live in cages full of easy tasks to avoid these things.

Short version: Being disabled means we often can’t reliably predict what we can and can’t do. (Or how hard something will be.) Finding the things we can do well often involves trying and failing at a lot of things.  The only way to find out is by trying things. Sometimes people try to prevent us from ever trying anything because they think that the pain of failure is unbearable. When we’re not allowed to fail, we’re not allowed to succeed either. We need space to fail without shame or punishment, so that we can find the things that we can do. It’s ok to be disabled. It’s ok to not know what you can do. It’s ok to try things that you might fail at. It’s ok to fail and keep trying, or to give up and try something else. It’s ok to decide that it’s not a good time to take those kinds of risks. We all learn to calibrate when to take these risks and when not to, and these are decisions that we need to be allowed to make.

Thoughts on symbol support and picture support

Real Social Skills

People with certain kinds of disabilities often need more than words in order to be able to communicate. One thing that can be helpful is the use of symbols or pictures.

Using symbols can expand and support someone’s expressive vocabulary. (For instance, picture symbols on a communication device can enable someone to use words they couldn’t use by typing or speaking).

Symbols can also expand and support someone’s receptive vocabulary. For instance, symbols can be used to illustrate materials, or to explain something to someone. They can also be used in things like powerpoint presentations in various ways.

Symbol support can do a lot of other things that make communication more possible for people with a wide range of disabilities. It’s not just about literacy; literacy-related things are just the easiest to explain.

Something I’ve been realizing matters is that everyone who uses symbols to communicate is a symbol support user. Even people who normally communicate in words; even people who only use symbols to communicate when they are talking to people with disabilities or listening to people with disabilities.

It’s important to remember that communication in symbols is happening on both sides of the interaction.

If someone is communicating with you by showing you symbols, then you are using symbols for receptive communication.

If you are using symbols to explain something to someone, then you are using symbols for expressive communication.

It’s important to keep this in mind.

If you’re using symbols, the symbols are part of the communication. Even if every symbol is attached to one word and only one word. The symbols don’t just tell people what the words are. They also have content, and it’s important to pay attention to what you’re saying with the symbols. They might not mean the same thing to the person you’re talking to that they mean to you. Particularly if they understand picture-concepts more readily than they understand word-concepts.

For example:

Sometimes people might select symbols on communication devices based on what the symbols mean rather than what the words they’re associated with them mean:

  • If someone is putting together phrases that don’t make obvious sense to you, they might mean something by it
  • It might *not* be stimming, random exploration, or that kind of thing
  • It might be intentional communication based on what the pictures mean to them
  • I think it is important to take that possibility seriously (even for someone who also speaks, or also uses words)
  • And *especially* important to take seriously if they’re indicating with body language that they want you to look at the screen)
  • (This is also true if someone is using PECS symbols in a way that doesn’t appear to make literal sense. It might be because the pictures mean something different to them than they mean to you)

Similarly:

  • If you’re using symbols to explain something to someone who needs symbols, the symbols matter
  • It’s not always enough to just pick words, then pick symbols that go with those words one-by-one
  • The content of the symbols can matter beyond literal word-by-word meaning
  • The way the symbols combine can also matter. (ie: the fact that a sentence makes sense in words and each symbol corresponds well with a word does *not* necessarily mean that the symbol-sentance makes sense)
  • The symbols also might not mean the same thing to the person you’re communicating with that they mean to you
  • If someone finds symbols easier to understand than words, they may derive more meaning from the symbols and your tone of voice and body language than they do from the words themselves
  • It’s important to pay attention to what you’re communicating with the symbols you choose as well as the words that you choose

Some considerations for symbol use:

  • Consistency between symbols matters. Symbols combine in ways that make more sense when there’s an underlying logic to the symbol system.
  • Symbols should not be childish or cutesy, even for young children.
  • Because nobody, not even young children, wants to be forced to communicate in cute ways.
  • And some really important topics (eg: abuse, boundaries, sexuality) are decidedly un-cute. People with disabilities need and deserve respectful communication about things that aren’t cute or shiny-happy.
  • Symbols should be comprehensible at a variety of sizes. (Eg: overly complex symbols don’t work well for small buttons on a communication device).
  • Symbols should be respectful, especially when they are symbols of people doing or thinking or being things (eg: protestors should look powerful rather than cute; adults should look like adults; symbols for “choice” should either be abstract or be age-neutral)
  • Symbols should be accurate. (eg: the symbol for anger should not be a smiling person; the symbol for diabetes should not be the same as the symbol for “no sugar”; wheelchair users should have the kind of wheelchairs that individuals own than hospital wheelchairs; the symbol for intellectual disability should not be the same as the symbol for the special olympics)
  • In all of these ways and other ways I’m not sure how to explain yet, I think that SymbolStix is the best existing symbol set.

Short version: Symbols can be really helpful for supporting communication and comprehension. If you’re using symbols to help someone else communicate or understand, it’s important to keep in mind that the symbols and the words both matter. Pay attention to what you’re communicating in symbols and what they’re communicating in symbols. Sometimes there are things going on beyond the literal meanings of the words that someone decided to associate with the symbols.

AAC does not replace nonverbal communication

Real Social Skills

This is a continuation of a series on why I think it’s a mistake to ignore nonverbal communication in an attempt to force someone to use AAC. (The short version: it’s disrespectful, it undermines someone’s ability to communicate, and it prevents people from developing a valuable skill.)

One reason nonverbal communication is important for AAC users is that you always have your body with you. That is not necessarily the case for AAC devices.

AAC best practices say that someone should have them available constantly. In practice, people don’t. This is for several reasons. One is that it’s not practical to take a device to some places (for instance, most people are not willing to take a high tech device to the beach, and low tech devices are a lot more limiting.) Another reason is that sometimes people forget, or vastly underestimate how close a device needs to be in order to be immediately available. Or any number of reasons, some innocent and some horrifying, and many a mixture of both.

Also, people take devices away from AAC users. They shouldn’t, but they do. Sometimes it’s accidental; sometimes it’s on purpose. It’s never ok, but people do it a lot. If you’re teaching a nonverbal child to communicate, you need to keep this in mind when you’re considering what to teach them. You can’t assume that people will always treat them appropriately, and you can’t assume that they will always have their device. If they are capable of communicating with their body, it is an important skill for them.

Whatever else happens, someone always has their body with them. People can do a lot more if they can use their body to communicate. Communicating in body language can make it possible to communicate in a swimming pool. It can make it possible to communicate with dirty hands. It can make it possible for someone to indicate that their device isn’t within reach and that they need it. It can make it possible to communicate about pain in medical situations. It can make it possible to communicate when someone else doesn’t want you to, and has taken your device away. It can make friendship possible that otherwise wouldn’t be. And any number of other things, all of which are important.

And in order to be able to communicate with body language, people need opportunities to practice and develop this skill. If you ignore someone’s nonverbal communication to encourage AAC use, you’re making it harder for them to develop comprehensible body language. That’s not a good idea, because comprehensible body language is important. People won’t always have access to their device. They will always have their body.

Short version: Nonverbal communication is important for nonverbal people, but parents are often encouraged to pretend not to understand it in order to encourage AAC use. This makes it harder for people to develop body language that others can understand. One reason this is a problem is that people don’t always have access to their devices, but people *do* always have access to their bodies. Nonverbal people should have support in developing nonverbal communication, because it is an important skill.

Honesty

Real Social Skills

When you’re teaching vulnerable kids social skills, it’s important to tell the truth.

They need skills for living in the world as it is, not as you would like it to be.

For instance: If you teach them to walk away from bullies, you have to tell them that sometimes bullies will follow them.

If you teach them to tell an adult, you have to teach them that sometimes the adult won’t care, or will take the bully’s side, or will tell them to stop tattling.

If you teach them to say “That hurts my feelings!”, you have to teach them that some bullies will laugh at them.

If you don’t teach kids that, when those things happen, they will think it is their fault. Or they will think that you don’t care. Either way, they’re not likely to be able to come to you for further support.

It’s much better to admit that your answers are imperfect. It’s much better to admit when you don’t know how to help. It’s much better if you can listen.

Sometimes the best thing you can say is “I’m sorry that people are being so mean to you. Do you want to talk about it?" 

Age-appropriate interaction with autistic people

Real Social Skills
A reader asked:
 
Hello, I am a teacher. I wanted to say thank you for your posts. I work with one student who is autistic and not quite non-verbal, but speaks very little.
 
I found myself talking to her as if she were much younger than she is because I had no way of telling if she was understanding. Your posts have helped me to understand that even though she doesn’t speak, it doesn’t mean she doesn’t understand, and even if she doesn’t, I should still treat her like the 12-year-old she is
 
On Wednesday I spoke to her to let her know that I was wrong to have spoken to her like a little kid, and that I would now be speaking to her like a twelve-year-old. She seemed pleased. I have ASD traits myself, but I’ve never been non-verbal (even when I couldn’t speak, I still signed), so I didn’t really understand that non-verbal doesn’t mean not understanding necessarily. Thank you.
 
realsocialskills said:
 
Oh wow. That is heartening to hear. It’s wonderful that you realized that it was wrong to talk to her like a young child, and that you apologized. That is such an important sign of respect for her. Thank you for taking this seriously, and thank you for telling me about this.
 
I want to add that, in addition to talking to her like a 12 year old, you probably need to develop better skills at listening to her like a 12 year old.
 
Probably most of the people you’ve known in your life who had a small expressive vocabulary or spoke only sometimes were very young children. Her speech is not like that. She is thinking much more complex things than a young child is capable of. If you’re not used to listening to nonverbal or minimally verbal folks who are not babies, you probably don’t yet know how to do so in an age-appropriate way.
 
So it’s not just the way you initiate talking to her that needs to change, it’s also the way you respond to what she says. She has a lot to say. Possibly through her words; possibly mostly through her actions; possibly mostly through body language. But, in any case, she is 12 years old, and she has a lot of 12 year old things to say.
 
You can learn how to listen to her better. It’s a matter of respect, practice, and skills you can develop.
 
For instance:
  • You can get a lot of mileage out of asking yes or no questions. (For some people, it helps to prompt with “yes or no” if it seems like answering yes/no questions isn’t a skill they have all the time) Eg: “Did you bring a lunch today – yes or no?”)
  • You can also use other kinds of two-option questions. Eg: If you know that she wants a book but she can’t tell you which book she wants, you can put your hand in the middle of the shelf and say “Up or down?” “Left or right?” “This one?”.
  • You can get even more out of asking a question with an open ended and closed response. Someone who can’t give you a meaningful answer to “What do you want to do?” may well be able to answer “Do you want to draw, or do something else?” Or “Is the answer England, or something else?”
 
You can also listen to what she says, make guesses about what she means, tell her what your guess is, and ask if you are right. For instance “You just said juice several times. I think that might be because you want to drink juice. Do you want juice, or do you mean something else?” Or “You just said “We’re all friends here!” and you sounded angry. Are you upset about something?“ Or “You just said “Separate but equal!”. Are you talking about discrimination?“
 
I’ve written about listening to atypical communication here, and here, and I wrote a more general post about how to provide respectful support to an autistic student here.
 
For some further perspective on this, I’d highly recommend reading the blog Emma’s Hope Book. It’s a blog written by the mother of a 12 year old autistic girl whose speech is unreliable (with some posts from her as well), and they have a lot of really important things to say about how to respect people whose communication is atypical. 
 
Short version: Your student has things to say, whether or not she has figured out how to say them. She is already saying some of them (in words or otherwise), whether or not you understand her communication. The more you assume that she is trying to communicate with you, and the more you assume that what she says is worthwhile, the more you will be able to understand her and teach her in age-appropriate ways. Scroll up for some examples.