parenting – Real Social Skills

A piece of advice for parents of kids whose disabilities are starting to become apparent.

April 5, 2017June 9, 2021 Real Social Skills

You’re probably going to have to deal with a lot of people who don’t respect your relationship to your child very much. You know a lot about your kid, and you’re probably going to have to deal with a lot of people who treat you like nothing you have to say matters.

You’re also probably going to have to deal with well-meaning people who say things like “you’re the expert on your kid!!!”. This sentiment can be affirming in some ways when people aren’t taking you seriously, but it can also be toxic.

Taken literally, “you’re the expert on your kid” isn’t true — and it doesn’t need to be. Even aside from disability, kids are complicated. No parent understands everything about their kid. Every parent faces confusing situations, and every parent makes mistakes. Parenting kids with disabilities tends to mean being confused more of the time. That’s ok. You don’t need to be a perfect expert on your kid. It’s both impossible and unnecessary.

There will be times when you have absolutely no idea. When your kid is struggling and you don’t know why, and strategies you’re trying aren’t working. When that happens, you’re still your kid’s parent, and the relationship still matters. You’re not going to be an expert on every aspect of your kid at all times, and that’s ok.

Sometimes when you don’t know what to do, others have useful ideas. It’s worth being aware that good strategies tend to get developed in silos. If you’re only looking in one context, it’s worth trying more. For instance, there are things medical/therapy professionals often know, things adult activists living with the same disability often know, things teaches often know, and so on. It can also be worth looking outside of your child’s disability group — resources intended for one disability are often helpful for another, and groups don’t always talk to each other.

(This goes double if your child is autistic. Nothing disabling about autism is completely unique to autism; all of it’s shared with some other disabilities. Resources associated with other conditions are often better (and less behaviorist.).

All that said — you will probably face situations in which none of that helps. Sometimes you’ll seek out all kinds of perspectives and still find that nothing you’re aware of helps enough. When that happens, you may attract people who give you a lot of bad advice loudly. When you’re worried, it can be hard not to believe people who yell at you and tell you that they are experts.

Don’t get psyched out by professionals who try to convince you to stop thinking for yourself. They’re good at sounding right in intimidating ways. They often do not actually know what they are talking about. And ultimately, you are your kid’s parent, and all parents are clueless sometimes, all parents make mistakes, and you and your child are allowed to be human.

Similarly, as your child grows up, they will grow apart from you in some ways. That’s how kids are, and that’s part of how maturity works. Teenagers do things that their parents don’t understand. All the more so, adults do things that their parents don’t understand. Even in childhood, no one can really be a complete expert on another human being. Disability doesn’t change that. It’s not going to be possible to be an expert on your kid, and that’s ok. They’re a person, and so are you.

Short version: “You are the expert on your kid” is too much pressure. There’s a grain of truth, but it doesn’t reflect reality — and it doesn’t need to. There are a lot of unsolved problems in disability support — and in any case, no human being can really be an expert on someone else.

If you’re feeling bad about your kid after an IEP meeting

April 4, 2017June 9, 2021 Real Social Skills

Content note: This is directed at parents, and it’s about mitigating damage that can be done by the stigmatizing language in the IEP process. It expresses sympathy towards parents who are feeling things that can be harmful to disabled kids (as well as a call for parents handle those feelings constructively). This post may be triggering to people with disabilities who have been harmed by these kinds of attitudes.

The IEP process can be really hard on kids, parents, and families. In order to get your kid the services they need, you’ve probably had to describe them using some awful language. It likely violated every one of your instincts about how parents ought to describe their kids. You may have had to do it anyway, in order to get your kid access to education.

It’s pretty normal to feel awful about either yourself or your child after describing them in such negative terms or allowing others to do so. It’s wrong, and it feels wrong, and you often can’t do anything about it — and it often comes along with pressure to believe that this is being caused by your child’s disability. If you’re finding that you feel that way, it’s important to do something about it. Kids are generally very aware of how adults in their lives feel about them. Feeling that way about your kid on an ongoing basis is really damaging to them and to your relationship with them. Don’t beat yourself up; do find ways to mitigate it.

It can help a lot to remind yourself that nothing about your child’s disability causes this kind of language. No child should ever be described this way, including yours. They’re not being described this way because of the things they can’t do — they’re being described this way because the system is ableist and often unwilling to respond to disability constructively. It’s not their fault, and it’s not your fault — it’s an awful fact about our culture’s attitudes towards disability.

You wouldn’t say that a baby is failing because they’re not talking — it’s just part of being a baby. If someone said that a typically-developing eight year old was failing because they can’t write 10 page papers, most people would be outraged. Your child’s development isn’t failure either, and they deserve appropriate education without stigma or panic. They are allowed to have a body and a brain, and they deserve to be respected as a human being. Language that treats them as a collection of deficits is cruel, and doesn’t reflect reality.

Your child’s differences aren’t a failure. Their development is what it is, and that’s ok. It’s ok to be different. It’s ok to have a disability. It’s ok to need appropriate education. Their need for appropriate education is not failure, it’s just that you sometimes have to cooperate with a system that wrongly describes it that way.

One way you can show yourself that it shouldn’t be this way is to write a better description of your kid after the fact. Rewrite what your child is learning, and what you’d like them to learn. Write about what the barriers are, and what kind of help they need. Write about their rights, and where you see that they might be violated. Write about them as the child who you know and love, not a collection of scary deficits. (It can also help to write down ten of your favorite things about your kid.) Their disability does not call for freaking out. It’s just part of who they are, and that’s ok.

Short version: IEPs describe kids using cruel stigmatizing language that doesn’t reflect reality. Having to cooperate with them anyway can do serious damage to parent-child relationships. Rewriting a new and better description of your child can help to mitigate this damage.

Meaningful echolalia

October 10, 2015June 21, 2021 Real Social Skills

Some people communicate mostly in memorized phrases or allusions to stories and events.

It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.

This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.

When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.

Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.

When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.

This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)

People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.

Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:

Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
Sarah watches SpongeBob a lot
She wants you and other people in her life to watch it with her
She says a lot of phrases from SpongeBob
(Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
If so, she should probably watch more TV, not less
And it’s really important for people in her life to listen to her
And understand the references she’s making and what they mean to her
(Watching the shows with her is probably an important part of that; showing her other shows might be too)
If you want someone to communicate, you have to listen to them, even when their communication is unusual

A lot of this post about listening to people whose speech is unusual applies in this situation too.

Short version: Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

Thoughts on symbol support and picture support

October 9, 2015June 9, 2021 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.

Doing right by victims of bullying

December 1, 2014June 21, 2021 Real Social Skills

A reader asked:

Hello! I’m in my first year of teaching and I have a couple of students who are being bullied verbally everyday by a group of older boys. Of course, I’ve been working on putting an end to it, but instead of helping my bullied students, the boys have just added me and another new teacher to their list of targets. They are not my students so I can’t directly punish them and their own teacher wouldn’t do anything about it. And their parents are busy rich people who couldn’t be bothered. Any advice?

There’s a book you need to read. The Are Word by Dave Hingsbuger is an amazing practical guide to helping victims of bullying. It’s short, easy to read, and has practical techniques that actually help people. (He wrote it for those who work with people with intellectual disabilities, but what he says is broadly applicable to everyone.)

Some things I think it’s important to acknowledge about this kind of situation (and this is part of what Dave Hingsburger discusses in his book):

You might not be powerful enough to make the bullies stop
The victims are almost certainly not powerful enough to make the victims stop
There are a lot of things you can do for your students, whether or not you can stop the bullies
Your students need you, and it’s important to be there for them

Be careful about your ego:

You probably want to see yourself as someone who stops bullying
Most teachers decent enough to care about vulnerable kids feel that way
This can lead to some bad consequences when there are bad things going on that you can’t stop
Sometimes teachers who want to believe that they are solving bullying end up talking themselves out of acknowledging bullying when they can’t fix it
Or worse, sometimes they convince themselves that teaching victims social skills or other responses will fix bullying
That ends up hurting victims really badly, and making them feel like it’s their fault and/or that no adults care very much about what’s happening to them.
Don’t do that to their students
Acknowledge what’s happening to your students, even when it hurts to admit to yourself that something bad is happening that neither you nor they can fix

Even when you are not powerful enough to control the behavior of bullies, there are a lot of other things you can and should do to help your students. I’ve written before about things adults can often do to help victims of bullying.

Short version: Teachers can’t always stop bullying; they can always do things that are at least somewhat helpful to victims of bullying. One of the most important things you can do is to be honest with yourself and your students about the situation. _The Are Word_ by Dave Hingsburger is an incredibly helpful book for anyone who wants to support victims of bullying.

Dealing with confusion in a costume store

October 24, 2014June 21, 2021 Real Social Skills

Costume stores can be really overwhelming and difficult for some people. Here are some reasons, and some things that can help.

Sensory overload:

The most obvious problem is sensory overload
Costume stores tend to be loud and have a lot of strange sounds
Sometimes costume stores have spooky music or scream tracks, which can be scary as well as physically unpleasant
They also usually have bad lighting and often have strobe lights
Costume stores also usually crowded with loud people
They also might smell weird, especially if there are a lot of masks and makeup

Things that can help with sensory overload in a costume store:

Go at an unpopular time of day so it won’t be crowded
(And if the lights are a big problem, going during the day might be better than going at night)
Carry a stim toy to help manage overload
If you get overloaded and disoriented, holding onto something solid like a shelf for a few seconds can help to reorient yourself
Wear headphones or earbuds to block out the sounds or make them more tolerable
You might need to take a lot of breaks to be able to tolerate the store long enough to successfully buy something. That’s ok
If you’re helping someone else get a costume, it’s worth saying explicitly that it’s ok for them to take breaks if they need to
If you think they might need a break, it can be good to say that they look overwhelmed and ask if they want to go outside for a minute (but also take no for an answer. Sometimes we’re overloaded *and* want to keep going)

Unfamiliarity

Costume stores are temporary, and they change from year to year
So you aren’t familiar with the layout, which can be disorienting if you depend on memorization to navigate stores
Also, most people don’t buy costumes very often
(and aren’t necessarily familiar with what is sold in a costume store, even they buy costumes every year)
This can be disorienting if you rely heavily on routine to navigate stores and make purchasing decisions efficiently

Things that can help with unfamiliarity:

Think beforehand about what’s available in a costume store (eg: they usually have several different kinds of costumes in bags. They also have masks and wigs and hats. They also have facepaint and accessories.)
If you’re helping someone else, talk to them about the different kinds of things that costume stores have before you go
Sometimes you can look online to find the layout of the store
It might help to walk through the store once or twice together just to see what is there, without trying to make decisions right away
(Orienting is hard. Making unfamiliar decisions is hard. Doing both at once can be *really* hard).
If you’re planning to help someone else (especially if it’s a child) it can help to visit the costume store first yourself so that you know what is in the store and where the various things are
(It’s easier to help someone else orient if you are already oriented)
You can look online to see which costumes are likely to be available this year
(You can also buy costumes online, but that runs the risk of ending up with something that’s not tolerable to wear.)
It might be better to buy costumes in a familiar store such as Target rather than an unfamiliar costume store. (That can also help with sensory overload since ordinary stores are less likely to have strobe lights, scream tracks, and extreme crowding)

Difficulty narrowing things down

There are a lot of options for costumes. It can be difficult to narrow down options
It can be especially difficult to narrow things down if you’re not sure what you want, but you know that you don’t like most of what you’re seeing
Or if you are having trouble processing what you’re seeing because of unfamiliarity, overload, or disorientation.

Some things that help with narrowing down options for someone else (I don’t really know any effective way to do this for yourself; there probably is one but I don’t know it):

An example of narrowing things down using categories:

You: Do you want to dress as a person or a thing?
Them: A person
You: A TV/movie character, a job, or something else?
Them: TV character
You: A superhero, or something else?
Them: Batman

Another example:

You: Do you want to look at the bag costumes, the makeup, or something else?
Them: Makeup
(then you walk together to the accessories area and they still look confused)
You: Do you want help narrowing it down, or do you just want to think about it?
Them: Think about it.
Them: I want cat makeup.
You: Do you also want a hat?
Them: No, a tail.

General advice for helping other people:

Don’t panic. It might be hard for someone to pick a costume no matter what you do
Helping means that you support them in ways that they welcome and find helpful
That doesn’t necessarily mean that buying a costume will be easy or comfortable for them
Things can be ok even if they’re hard or uncomfortable
If they don’t want to buy a costume in a costume store, that’s ok. If they want to do it even though it’s hard, that’s also ok.

It’s also possible to wear a costume without having to go to a costume store. Some other possibilities might be easier for some people.

High school graduation when high school was awful

May 1, 2014June 21, 2021 Real Social Skills

A reader asked:

My daughter graduates from high school in a month. She has Aspergers and had many challenges but managed to do well academically. However, she didn’t feel that the school dealt well with her. She is happy to close the door on that part of her life and wants to do it without ceremony. I get it. My husband and I would like to see her walk at graduation but are willing to accept her not attending the ceremony. However, she has said she will go if we ask her to. Should we ask or leave it alone?

realsocialskills said:

I think that the graduation ceremony probably has a very different symbolic meaning for you than it does for your daughter.

I think that, for you, it is probably like this:

As her parents, you are very proud of her accomplishment in doing well in high school in a difficult situation
You want to celebrate that
For you, seeing her walk at graduation is a profound symbol of what she has accomplished and how proud you are of her

I think for her, it is probably like this:

High school was a bad experience for her
Going to graduation feels like a celebration of the school and her relationship with the school
She doesn’t feel that the school treated her well, so she doesn’t want to celebrate with the school

If I’m reading the situation and the symbolic meanings it’s taking for all of you correctly, I don’t think that it is a good idea to ask your daughter to go to the ceremony for your sake. I don’t think that it’s good to push her into something that, for her, feels like celebrating people treating her badly.

But, deciding not to go to the graduation ceremony doesn’t mean that you can’t celebrate your daughter’s accomplishments. You can likely find a form of celebration that would suit all of you, for instance:

Having a graduation party for your daughter and her friends
Having a family dinner at a restaurant your daughter likes
Buying a symbolic present (eg: something related to your daughter’s interests, or something she will use in the next phase of her life)
Taking a trip together
Baking a cake
Writing a story or a poem
Or however else your family celebrates milestones