disabled children

Babysitting a nonspeaking four year old

Question from an anonymous reader:

I regularly babysit a 3 (almost 4) year old who has Autism. He does not speak, and he doesn't yet have a reliable alternative form of communication like signing or AAC, though he probably will soon.

 I have a lot of friends and two cousins who have Autism, but they all speak or sign. I find it difficult sometimes to understand what the kiddo in question is thinking, or wants, and I wondered if you or any of your followers have any first hand tips or advice on how I could better understand him? 

I know everyone is different, and I'm learning to read things like his body language, but I wondered if you/any of your followers who don't speak or spoke later than most remember anything that helped them get across what they meant when they were younger, or things adults did that were especially helpful. He doesn't have the coordination to sign or draw what he wants yet, being so little. I want to help him feel less frustrated and to be as good a babysitter as I can be.

Realsocialskills answered:

For the sake of readability, I’m going to call your cousin Anthony in this post. 

The first thing I’d say is: Listening to Anthony matters whether or not you succeed in understanding him. You may not be able to figure out what he is thinking, he may not yet be able to tell you — but you *can* treat him as a person who has thoughts and feelings worth listening to. That matters in and of itself, and it also makes successful communication much more likely.

Learning to communicate is really hard, even for typically developing kids. (Which is a reason why two year olds have so many tantrums, and why older kids usually grow out of that.) In early childhood education, a lot of what kids learn is that it’s possible to communicate in ways that others can understand — and that words are usually a better option than freaking out. One of the main ways early childhood educators teach kids these skills is by listening to them, and by supporting them in understanding the feelings they’re having. 

Kids with communication disabilities have more trouble learning to communicate in ways that others can understand — and they also often have more trouble learning that communication is even possible. Disabled kids need *more* exposure to adults who want to listen to them, and *more* support in understanding their feelings — but they often get less of both. Their feelings are often ignored, and their communication is often treated as nonexistent. 

All too often, kids with disabilities learn young that no one wants to listen to them. They often try their best to communicate, only to have their attempts interpreted as random meaningless noise or deviant misbehavior. When nobody listens, it becomes really hard to keep trying. One of the best things you can do for Anthony right now is help him not to give up.

It’s important to keep in mind that Anthony is a person with a perspective of his own. Our culture socializes us to see people with disabilities as having needs, but not thoughts or feelings. That implicit bias goes really deep for almost everyone, including AAC experts and long-time disability rights activists. Be careful to treat Anthony as a person with thoughts, feelings, and questions. This is a profoundly countercultural attitude. You can’t assume that it will happen by itself; you have to do it on purpose. (I did a presentation on this for medical providers a while ago which may be of interest.  )

Some specific things you can try:

Say explicitly that you’re trying to understand, eg:

  • “I don’t understand you yet, but I’m listening”.
  • “I’m not sure what you mean, but I do care”.
  • It doesn’t go without saying — and sometimes saying it makes a big difference!
  • Look for actions that might be intended as communication:
  • Does he point at things? Lead you to things? Flap differently under some circumstances?

Make a guess about what you think he might mean, and act on it.

  • It can be worth using words to describe what you’re doing, eg:
  • “I think you want the book because you’re looking at the book. I am getting the book”.
  • “I think the light is bothering you because you’re covering your eyes. I am turning off the light.”
  • He can’t read your mind, so it might not be obvious to him that you’re acting on what you think he’s doing — so tell him!

Name feelings you think he might be having, eg: 

  • “Susan took your truck. You are mad.”
  • “You like the marbles. You are happy.”
  • “Jumping is so fun!”
  • “You don’t like that texture.”
  • (Nb: Telling *adults* what they are feeling in these terms is usually *not* a good idea, but it’s a pretty common method used to help little kids learn about feelings — *if* you know with reasonable certainty what their feelings are.)

Ask questions, and offer choices, eg:

  • “Do you want the red shirt or the blue shirt?”
  • “Should we read the princess book or the truck book?”
  • “Should we go to the swings or the sandbox?”
  • Even if he can’t respond, being asked matters — it shows him that you care what he thinks, and that there’s a reason to try to communicate.

It can help to make the options more concrete, eg:

  • He might be more able to tell you which shirt he wants if you’re holding both of them. 
  • Or if you’re holding one in one hand and one in the other.
  • Or if you put them down in front of him.

If he responds to your question in a way that you think might be communication, respond to it as communication: 

  • Eg:  “You pointed to the dragon book, so we’ll read the dragon book”.
  • Or it may make more sense to just start reading it. Sometimes that works better than inserting too many words. 
  • Eg: “Ok, we’ll go to the park”.

You can also try yes-or-no questions:

  • “Do you want to go to the park? Yes or no?”
  • “Do you want to read the dragon book? Yes or no?”
  • “Is the dragon scary? Yes or no?”
  • “Is the king silly? Yes or no?”
  • Again, even if he can’t respond in a way you understand, trying matters.

You also might be able to teach him to point to things:

  • Pointing doesn’t require motor skills on the same level that writing and drawing do.
  • Again, in the two book example, you can ask him to point to the one he wants.
  • You can also show him pointing by doing it yourself, eg:
  • Take two books, and say “I choose the dragon book”, point to it, then read it.
  • Take two books and ask him “Which book do you choose?”
  • (Etc: It can take some time and trial and error to figure out how to teach this in a way that sticks, but it’s often worth trying.)

If he has a way to communicate “yes”, and “no” or choose between options, you can also check your guesses more directly:

  • “I think you said park. Am I right?”
  • “Did you say park, or something else?”
  • “Are you trying to tell me something, or are you playing?”

Remember that words can be communication even when they’re unusual: A lot of autistic people use idiosyncratic language to refer to things, or repeat phrases they heard somewhere else – in a way that they may or may not mean literally. Here’s a method for noticing when repetition is communication , and some thoughts on listening to folks whose speech is unusual.

Give him time to process and respond:

  • The standard teaching advice is: When you ask a question, wait at least seven seconds before you say anything else.
  • This feels a little unnatural — it can feel like a *very* awkward pause, and it can be tempting to jump in and say more stuff to clarify.
  • But if you say more stuff to someone who is thinking and formulating their answer, it tends to just give them *more* stuff to process. 
  • So give him time to respond — and be aware that autistic people often need longer to process and respond.

If you have an iPad you’re willing to let him play with, iPad use can really help some kids with motor skills and learning communicative cause-and-effect.

  • Most kids learn pretty quickly how to scroll through select the app they want, and that skill often transfers.
  • Most kids that age like Endless ABC, a really fun pre-literacy words-and-spelling app. https://www.originatorkids.com/?p=564
  • (That app also builds an association between interacting with a touch screen and making meaningful sounds)
  • You can also try the Toca Boca apps — a lot of kids like those, and some, like Toca Hair Salon, don’t require particularly strong motor skills.
  • Often, the best way is to play with the app together — eg, you show them how to drag the letters around, then offer them a turn.
  • Or help them out when they get stuck, without taking over.
  • Or say things like “which color should we pick? How about purple?” and see how they react.

Don’t expect AAC to fix everything:

  • Everything in this post still applies once he gets a device or a system.
  • An AAC device is just a tool. It’s one mode of communication, which might be useful for him under some circumstances.
  • Having an AAC device will not make him instantaneously able to communicate using words in the way that typically-developing kids his age do.
  • While some people learn to use an AAC device fluently very quickly, that is rare. 
  • Most people who use AAC because of a childhood speech delay take a long time to learn it.
  • And in any case, giving someone a tool doesn’t cure their disability. 
  • An AAC user with a communication disability still has a communication disability, and disabilities that interfere with speech sometimes also interfere with language. 
  • Even people *without* language disabilities tend to take a while to learn, for all the same reasons that typically-developing kids take a while to learn how to use words to express themselves. Communication takes practice.
  • (And also, all existing AAC technology has significant limitations and difficulties. It’s easier for typically developing kids to learn to speak than it would be to learn to use AAC, and having a speech disability doesn’t magically make AAC use easy.)
  • AAC implementations can also end up treating AAC use as an end in itself and forget that the point is to support communication. 
  • For most AAC users, AAC is one communication mode among many they use, and it’s not always the best one in every situation — eg: pointing to a banana can be a *much* more efficient way to communicate than scrolling through a device and finding the “I” “want” and “banana” buttons.
  • If Anthony gets an AAC system, he will still need you to put effort into listening to him, and he will still need you to take all of his communication seriously.

Remember that disability isn’t bad behavior, and don’t be mean:

  • Don’t ignore his communication in order to force him to talk or use a system.
  • The best way to encourage communication is to listen!
  • He’s not struggling to communicate because he’s lazy; he’s struggling to communicate because he has a disability.
  • He’s doing something really hard, and he’s in a hard situation, and that needs to be respected and supported.
  • You don’t need to introduce artificial difficulty; he is already experiencing more than his share of the real kind.

Anyone else want to weigh in? What is helpful for effective communication with a nonspeaking four year old? You can answer using my contact form.

 Tl;dr If you’re babysitting a kid who has trouble with communication, the most important thing you can do is listen to them. Scroll up for some specific options. 

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

One reason to tell your kids about their disability

Kids eavesdrop. No matter how hard you try to keep things from them about their disability, they will eventually succeed in overhearing you. 

The time kids are most likely to succeed in eavesdropping is when you are the most upset about their disability — because being upset and overwhelmed takes a lot of energy, and it makes it harder to pay attention to keeping kids from overhearing.

Further — kids these days have access to Google. When kids overhear adults talking about their disability, they are likely to investigate by googling it. The first result for their disability is probably *not* what you want your kid to believe about themself and their future.

Talking to your kids about their disability is much better than letting them find out about it from googling what they overhear. 

Image description: "Talk to your kids about their disability" next to a drawing of an adult holding hands with a child.

Image description: "Talk to your kids about their disability" next to a drawing of an adult holding hands with a child.

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

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.

Tl;dr “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

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.

Tl;dr 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.

Open letter to sick kids and disabled kids.

Dear sick kids, dear disabled kids,

You may be facing a lot of adults who want to believe that your therapy is fun. You may feel differently. You may not be having fun. That’s ok. You’re not failing. You don’t owe it to anyone to enjoy the things that are happening to you.  

Even if you think the therapy is important, you might not think it’s fun. You don’t have to think that it’s fun. Your feelings are yours, and your feelings matter. No one has the right to tell you how to feel. No one has the right to insist that you think something is fun.

If you don’t think the therapy is a good idea, you have the right to have that opinion. Your parents or other adults may be able to decide what treatments you get. They don’t get to decide what you think, or how you feel. They can’t make things fun by loudly insisting that they are fun, or by making you smile.

It’s ok not to think that your breathing treatments are a fun game. Even if your mask is fish shaped. Even if you put frog stickers on it. Even if you had a lot of fun picking out the stickers. Even if you know that you need it in order to breathe properly. Push come to shove, it’s still a breathing treatment. You are under no obligation to enjoy it. If you’re not having fun, then it’s not fun. Even if people make you smile.

It’s ok if you don’t think a purple hospital gown means that the hospital is fun. Even if you love purple. Even if you put your favorite sparkly heart stickers on it.   Even if you want the operation or procedure you’re having, you don’t have to think that what you’re doing is fun. Even if the volunteers and play therapists are really nice. You’re still in the hospital, and it’s ok to feel however you feel about it.

It’s ok to dislike the tracing exercises your occupational therapist makes you do. Even if she says that they’re really fun and that she loved them when she was your age. It’s ok to think of it as work rather than fun. It’s also ok to think it’s a waste of your time. You are not her, and it’s not ok for her to tell you how to feel. She is not the boss of your feelings, or your likes and dislikes. You are under no obligation to have fun.

It’s ok to dislike singing silly songs with your speech therapist. Even if he tells you in an excited voice all about the great new conversation starter iPad app, it’s ok not to think it’s fun. Even if other kids seem to like it. Even if there are fun prizes for cooperating and smiling. Even if people frown when you don’t seem happy enough. You don’t have to think anything is fun. Your feelings are yours. You don’t owe it to him to like the activities you do, even if he expects it from you.

It’s ok to dislike the sensory diet an occupational therapist puts you on. You don’t have to like being brushed.You don’t have to like weights or weighted blankets.You don’t have to believe that squeezing a fidget toy is better than rocking, and you don’t have to think that chewing a tube makes the lighting and noise any less painful. Your feelings are real. If you like something, that matters, whether or not anyone else thinks it’s important. If something hurts, your pain is real whether or not anyone acknowledges it.

And so on. If you’re sick, or you’re disabled, or you’re both, there are probably a lot of things happening to you that aren’t happening to other kids. It’s ok to have whatever feelings you have about that, even if others desperately want to believe that you think all of it is really fun. It’s ok for you to think that something isn’t fun, even when adults speak in enthusiastic voices, put stickers on things, use fun toys, or whatever else.

It’s ok to think something is fun, and it’s ok to think it’s really not fun. It’s also ok to find something helpful without finding it fun. You have the right to like what you like, and dislike waht you dislike. Your feelings are your own, even if you have to smile to get people to leave you alone. 

It’s ok to like things, and it’s ok to dislike things. You are a real person, your feelings are yours, and your feelings matter. Illness, disability, and youth don’t make you any less real.

“I don’t want him to feel different”

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

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.

Tl;dr 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.

A thought on making difference ok

One issue with accommodations and modifications in school, is that it can often be hard to avoid stigma. Kids don’t usually like being singled out or doing things conspicuously differently. Also, nondisabled kids often resent it when disabled kids are allowed to do things that they are not allowed to do.

Further, one frequent objection to accommodations is “but if I let one kid do this, then all the other kids will want to.”

Sometimes that’s true — and, often, the best solution to that problem is to just let all the kids do whatever the thing is. Sometimes there’s no good reason to restrict access to something. Sometimes changing the rule works better than making exceptions to it.

One way that something works to correct this problem is to make some of their accommodations available to other kids who would like to try them. The kid who has a documented need for accommodations probably isn’t the only one who would benefit from them.

And even aside from that, it’s good for kids to explore the world and experiment with different ways of doing things. This is a good way to learn that difference is normal, and that doing things differently is a basic fact of life.

For instance, if one kid needs to use manipulatives for math, maybe try making manipulatives available to all the kids. 

If one kid needs a large print worksheet, maybe make a few large print copies and let kids try doing it that way.

If one kid needs to chew stuff, maybe make things available for other kids to chew.

If one kid needs to use fidget toys, maybe make them available to all the kids who would like to try it.

If one kid needs to type, and you have the resources to make that available to other kids too, maybe let them try doing assignments that way. And let the kids that works better for continue to do it.

And, beyond that, it helps to get in the habit of providing different ways to do things even when there isn’t a kid who needs them as a specific accommodation. 

Not in the sense of “take a walk in the disabled kid’s shoes”, this is not a disability simulation. The point shouldn’t be empathy building, and it should not be presented as being about the disabled kid. The message is “there are a lot of legitimate ways to do things, and it’s ok to experiment and figure out what works for you, even if most people don’t do it the same way as you”.

You can’t always do this, and you can’t always do this for everything. When you can, it helps, a lot.

Nice Lady Therapists

Content warning: this post is about physical and emotional harm done to people (especially children) with disabilities by (mostly) female therapists. Proceed with caution.

 This is a hard post to write. It’s about abuse. It’s about a kind of abuse I haven’t seen described much. I think abuse is the right word, even though a lot of abusers probably genuinely think they’re doing the right thing.

Anyway, here goes:

Many, many people with disabilities I know have been harmed or even outright abused by Nice Lady Therapists. (Usual caveat: not all therapists are abusive, and this post is not opposition to childhood therapy. I’m saying that therapists need to stop hurting kids and other vulnerable people, not that therapy is evil. Pointing out that therapy is often important and that many therapists are good is not an answer to what I am describing.)

 

Nice Lady Therapists tell us that, whatever they do to us is by definition nice, and good for us. And that we like it, and that they love us, and that they are rescuing us, and that we are grateful.

They have a brightly-decorated therapy room full of toys, and assure every adult they come across that ~their kids~ love therapy. They use a lot of praise and enthusiastic affect, and maybe positive reinforcement with stickers and prizes. They might call the things they have kids do games. Some of them really do play games.

And every interaction with them is degrading in a way that’s hard to pinpoint, and hard to recover from. They do all kinds of things to kids with disabilities that typically developing kids would never be expected to tolerate. And they do it with a smile, and expect the kids they’re doing it to to smile back.

Sometimes it hurts physically, sometimes it hurts emotionally. Sometimes it’s a matter of being 12 years old and expected to trace a picture for toddlers for the zillionth time. And being told “This is fun! I used to do this all the time when I was a kid!”.

Sometimes it’s a matter of being forced to do a frightening or physically painful exercise, and being forbidden to express pain or fear. It hurts their feelings if a kid is upset. Don’t we know how much she cares? Don’t we know that she’d never do anything to hurt us? Don’t we want to learn and grow up to be independent?

Sometimes it’s a matter of being expected to accept intensely bad advice as though it’s insight. For instance, getting sent to therapy because you’re not making friends. And being told “We are all friends in this school! You have to give the other kids a chance.” And, if you try to explain otherwise, she patiently and lovingly explains to you why your thinking is distorted and you’ll have lots of friends if you just let yourself try.

Sometimes it’s - crossing a physical line. Touching in a way they have no good reason to be touching. Or touching over the objections of the kid in a way that is in no way justified by therapy goals. Sometimes sexually, sometimes not. Sometimes in ways that are against ethical standards of practice, sometimes not. But intimately, invasively. And if you say no, she patiently, lovingly, explains that you have nothing to be afraid of and that everything is ok. And that if you just trust her, you will have fun and get better. And when her profession has professional training about boundaries and appropriate touch, she thinks or even says “women don’t do that.”

Some male therapists do many of these things too, but there’s a gendered version of it that usually comes from women. And that can cause a problem for people with disabilities who are recovering from this. Most things about trauma and abuse of power are about misogyny in some way. They’re about men hurting women, and taking advantage of power dynamics that favor men to do so. Those descriptions are important because that pattern is common. But it is not the only abuse pattern, and it is not the only gendered abuse pattern.

Female therapists are subjected to misogyny and the power of men just as much as any other women. But they also have tremendous power over people with disabilities, many of whom are deeply dehumanized. The assumption that women have neither the power nor the ability to hurt anyone gets really dangerous really quickly for children with disabilities receiving therapy.

And it also means that people with disabilities often have a different relationship to gender than most nondisabled people. If you’ve been harmed by women over and over and assured that you liked it, it complicates things. If you’re a girl, it can make it hard to see a group of women as a Safe Space, especially if they think the thing making it safe is keeping the men out. If you’re a boy who has been repeatedly harmed by women who believed they were powerless, it can be hard to understand that the gender hierarchies that feminists and others talk about actually do exist. And it complicates things in any number of other ways.

But if you have been hurt by Nice Lady Therapists, you are not alone. If it has affected your relationship to gender, you are not alone. If it has left scars that others say you shouldn’t have because she was nice and meant well, you are not alone.

You don’t have to think someone is nice because she says she is. It’s ok to think that someone is hurting you even if that upsets them. You don’t have to think someone is safe or loving just because they are a woman or a therapist or smiling. Women can be abusive too. In human services, it is common. You are not alone, and it was wrong to treat you that way. The harm done to you was not because of your disability, and it’s not something that you could have fixed by being more cooperative or working harder or having a better attitude.  It’s not your fault, and it’s not because of anything wrong with you. And it’s not your fault if it still hurts. 

I’m not sure what else to say about this today. I think that there is a lot that needs saying (and I hope I will find some of it in the comments.) Any of y'all want to weigh in?

“I hope that I will live one heartbeat longer than she does”

Content warning: This post is about sentiments leading to murder of people with disabilities. Proceed with caution.

At an autism conference recently, I heard the father of a 20 year old autistic man say in his speech to the whole conference, “I hope to live one heartbeat longer than he does. I’m sure many of you feel the same way about your children.”

That sentiment gets people killed. If you are the parent of a disabled child and you say things like this, it is a matter of life-and-death importance that you stop talking this way. The father who said this is probably entirely correct that many of the other parents in the audience felt the same way. I have heard this sentiment expressed by many other parents of children with disabilities (not just autism.)

Parents who hope to outlive their autistic children are talking about people who, barring tragedy, will almost certainly outlive their parents. Autism does not limit lifespan; most autistic people should live to be old. If you hope to outlive your autistic child, it means that you are hoping that their life will be tragically cut short. It means you think they’re better off dead than they would be living without you. That’s dangerous.

It’s not true. Nobody is better off dead. It is not a blessing to die young. Expressing a desire for someone to die young is not love. (People who say this may well love their children in other ways, but this sentiment is not love.)

Please stop implying that your child will be unable to live and be happy after you die. People just like your child live on in adulthood after their parents die, and your child can too. And they will have a much easier time of it if you accept that they will outlive you, and help them to prepare for their life without you.

The only way it’s likely to live a heartbeat longer than your autistic child is if you kill them and then yourself. Many parents who feel this way do exactly that. And, even if you would never kill your child, people who are considering committing murder can hear what you say. If you say that you hope to live a heartbeat longer than your child, it makes the murder that is the only way this can plausibly happen seem like a much more legitimate choice. Don’t give potential murders that kind of encouragement.

In the disability community, we observe a day of mourning and read a list of people with disabilities murdered by caregivers.

The list is long. And it’s only a list of the names we know. There are many others who died without making the news. 

I hope and pray that your child never ends up on this list. I hope and pray that they outlive you and have a happy and meaningful adulthood. I hope and pray that this list never gets any longer. 

One murder is too many. Not ever again.

Under the cut is the (as of this post) current list of the names we know. In loving memory; may these murders be the last:

  • Tracy Latimer, 12 years old, gassed by her father in 1993
  • Charles-Antoine Blais,  6 years old, drowned by his mother in November 1996
  • Casey Albury, 17 years old, strangled by her mother in 1997
  • Pierre Pasquiou, 10 years old, pushed into the sea by his mother in 1998
  • Jim Helm, 27 years old, killed by his mother in a murder-suicide in November 1998
  • Daniel Leubner, 13 years old, burned alive by his mother in September 1999
  • James Joseph Cummings Jr, 46 years old, stabbed to death by his father in the institution where he lived in November 1999
  • Justin Malphus, 5 years old, beaten and drowned by his mother in April 2000
  • Gabriel Britt,  6 years old, suffocated by his father in March 2001
  • Johnny Churchi, 13 years old, strangled by his mother in 2001
  • Mark Owen Young, 11 years old, poisoned and then pushed off a bridge by his mother in a murder-suicide, September 2001
  • Brahim Dukes, 18 years old, starved by his stepmother in December 2001
  • Lilian Leilani Gill, 4 years old, strangled by her adoptive mother in March 2002
  •  Mitchell Dickson, 10 years old, slashed to death by his mother in June 2002
  • Dale Bartolome, 27 years old, killed by his father in a murder-suicide in July 2002
  • Jason Dawes, 10 years old, suffocated by his mother in August 2003
  • Maggie Caraballo, 38 years old, beaten to death by her sister in August 2003
  • Angelica Auriemma, 20 years old, drowned by her mother who first tried to electrocute her to death in 2003
  • Scott Olsen, 29 years old, starved to death by his sister in December 2003
  • Eric Bland, 38 years old, starved to death by his sister in March 2004
  • Scarlett Chen, 4 years old, drowned by her mother in July 2004
  • Patrick Markcrow, 36 years old, drugged and suffocated by his mother in March 2005
  • Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law in April 2005
  • Sarah Naylor, 27 years old, shot by her mother in a murder-suicide in September 2005
  • Ryan Davies, 12 years old, drowned after his mother caused him to fall off of a bridge in a murder-suicide
  • Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire in May 2006
  • Katie McCarron, 3 years old, suffocated by her mother in May 2006
  • William Lash III, 12 years old, shot by his father in a murder-suicide in July 2006
  • Lakesha Victor, 10 years old, starved by her mother in August 2006
  • Marcus Fiesel, 4 years old, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town in August 2006
  • Ulysses Stable, 12 years old, throat slit by his father in November 2006
  • Brandon Williams, 5 years old, poisoned and beaten to death by his mother in March 2007
  • Criste Reimer, 47 years old, thrown from a balcony by her husband in 2007
  • Jared Greenwood, 26 years old, died of infected bed sores after being left in place and neglected by his mother in 2007
  • Francecca Hardwick, 18 years old, locked in a burning car with her mother in a murder-suicide in October 2007
  • Naomi Hill, 4 years old, drowned by her mother in November 2007
  • Shellay Ward, 7 years old, starved and neglected by her parents in November 2007
  • Maxwell Eyer, 2 years old, beaten to death by his father in December 2007
  • Xiao Fei, 20 years old, poisoned and suffocated by her mother in 2008
  • Calista Springer, 16 years old, chained to a bed and abandoned in a fire by her entire family in 2008
  • Courtney Wise, 17 years old, starved to death by her mother in February 2008
  • Ethan Scott Kirby, 3 years old, beaten to death by his mother’s boyfriend in August 2008
  • Jacob Grabe, 13 years old, shot by his father in 2008
  • Tom Inglis, 22 years old, died after his mother administered an overdose of heroin to him in November 2008
  • Christian Clay Jenkins, 14 years old, given an overdose of oxycodone by his father in 2008
  • Kyle Dutter, 12 years old, shot by his father in a murder-suicide in 2008
  • Lexie Agyepong-Glover, 13 years old, left in a frigid creek by her mother and died of drowning and exposure in 2009
  • Terrell Stepney, 19 years old, poisoned by his grandmother in a murder-suicide in 2009
  • Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life in March 2009
  • Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care in April 2009
  • Pamela Camille Hall, 59 years old, stabbed by her son-in-law in April 2009
  • Lloyd Yarbrough, 62 years old, fed an overdose of prescription medication through his feeding tube by his wife in May 2009
  • Jeremy Bostick, 11 years old, gassed by his father in 2009
  • Peter Eitzen, 16, stabbed by his mother in July 2009
  • Tony Khor, 15 years old, strangled by his mother in October 2009
  • Betty Anne Gagnon, 48 years old, tortured to death by her sister and brother-in-law in November 2009
  • Walter Knox Hildebrand Jr, 20 years old, died of a seizure induced by his brother’s physical abuse in November 2009
  • Laura Cummings, 23 years old, raped and tortured to death by her mother and brother in January 2010
  • Jude Mirra, 8 years old, forced by his mother to overdose on prescription medications in February 2010
  • Ajit Singh, 12 years old, forced by his mother to drink bleach in February 2010
  • Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area in April 2010
  • Leosha Barnett, 17 years old, starved to death by her mother and sister in May 2010
  • Glen Freaney, 11 years old, strangled by his mother in May 2010
  • Payton Ettinger, 4 years old, starved by his mother in May 2010
  • Christopher Melton, 18, gassed by his mother in a murder-suicide in June 2010
  • Rylan Rochester, 6 months old, suffocated by his mother in June 2010 because she believed him to be autistic
  • Kenneth Holmes, 12 years old, shot by his mother in a murder-suicide in July 2010
  • Zain Akhter, 5 years old, and Faryaal Akhter, 2 years old, strangled by their mother after she first tried to get them to drink bathroom cleaner in July 2010
  • Emily Belle Molin, 85 years old, hit and run over with a car by her son in August 2010
  • Rohit Singh, 7 years old, beaten to death by his father in September 2010
  • Zahra Baker, 10 years old, murdered and dismembered by her stepmother and perhaps her father in October 2010
  • Chase Ogden, 13 years old, shot by his mother in a murder-suicide in October 2010
  • Karandeep Arora, 18 years old, suffocated by his parents in October 2010
  • Donald Parojinog, 83 years old, starved by his daughter in January 2011
  • Chad Jackson, 25 years old, starved and neglected by his mother in July 2011
  • Julie Cirella, 8 years old, poisoned by her mother in July 2011
  • Joseph Conant, 11 years old, and Nacuma Conant, 33 years old, shot by their father/brother in July 2011
  • Noe Medina Jr, 7 months old, thrown 4 stories by his mother in August 2011
  • Benjamin Barnhard, 13 year old, shot by his mother in a murder-suicide in August 2011
  • Jori Lirette, 7 years old, decapitated by his father in August 2011
  • George Hodgins, 22 years old, shot by his mother in a murder-suicide in March 2012
  • Daniel Corby, 4 years old, drowned by his mother in March 2012
  • Malea Blakely-Berry, 16 years old, starved by her mother in June 2012
  • Matthew Graville, 27 years old, tortured and beaten to death by his half-brother in July 2012
  • Melissa Stoddard, 11 years old, suffocated in restraints that her father and step-mother routinely used in December 2012
  • Robert Gensiak, 32 years old, starved by his mother and sisters in March 2013
  • Alex Spourdalakis, 14 years old, poisoned and stabbed by his mother and godmother in June 2013
  • Matthew Hafer, 28 years old, poisoned by his mother in July 2013
  • Marian Roberts, 57 years old, shot by her father in a murder-suicide in August 2013
  • Jaelen Edge, 13 years old, poisoned by his mother along with his sister Faith in September 2013
  • Tamiyah Audain, 12 years old, starved, abused and neglected by her cousin in September 2013
  • Dameian “Luke” Gulley, 14 years old, strangled by his stepfather in November 2013
  • Randle Barrow, 8 years old, drowned by his mother in a murder-suicide in December 2013
  • Mickey Liposchok, 52 years old, shot by his father in a murder-suicide in December 2013
  • Damien Veraghen, 9 years old, poisoned and suffocated by his mother in a murder-suicide in January 2014
  • Vincent Phan, 24 years old, shot by his mother in a murder-suicide in January 2014

A feminist dynamic

Sometimes feminists, especially white feminists, attribute everything to patriarchy and ignore other power dynamics.

This can cause a lot of problems. One problem is that white feminists sometimes ignore racism and do racist things. I don’t know as much about that as I should, so I can’t yet write about it at length. But I do know about another issue more extensively:

Some feminists teach girls that sexism is the issue when it isn’t. For instance, this happens a lot to girls with disabilities. Girls will disabilities get discriminated against in ways that most women do not, but as they reach puberty they’re often taught that everything they are experiencing is about sexism.

That can be crushing. It can also cause problems for disabled boys, who are discriminated against in ways that most women are not. (Or ways that are similar to what women experience, but not normally experienced by boys without disabilities). Sometimes they are taught that they can’t possibly be experiencing real discrimination because they are boys. This is especially common when women who feel powerless have a lot of power over boys with disabilities. (Especially developmentally disabled boys who are going through puberty and starting to have sexual feelings.)

Sexism and patriarchy are very real things that destroy lives and hurt people in all kinds of other ways. There are also other power relationships that hurt people. Being aware of patriarchy is not enough.

What it means when kids aren’t allowed to know about bad things

There are a lot of things kids are often considered too young to know about. For instance:

  • Rape
  • Violence
  • Racism
  • Sexism

The problem is, almost every bad thing kids are considered too young to know about happens to some kids.

The rule that kids should be shielded from these things has some really negative effects on the kids who are most vulnerable.

It hurts kids who have been abused, because they’re considered dangerous to other kids if they ever talk about it. Their peers aren’t supposed to know about it, so they’re supposed to just never talk about it ever. That creates a lot of shame, and living with that kind of shame hurts people.

It also hurts kids who are currently being abused. They get the overwhelming message from everyone that kids are not allowed to talk about these things. That makes it hard to tell adults what’s going on, especially if they don’t quite know the right words. If they try to tell indirectly, they might even be hushed and told that they’re too young to be thinking about that kind of thing.

It hurts kids of color, because they’re often required to put up with racist things rather than have the white kids find out about racism. Because they’re old enough to have to deal with racism, but their white peers aren’t considered old enough to be told about it.

There’s also parents who don’t want their kids to play with disabled kids, because they think their kids are too young to know about disability or serious illness or injury. Or even, to the point that a kids’ show hosted by an amputee actor got a lot of complaints that her missing arm was upsetting to children. This kind of attitude is all over the place.

Preventing kids from thinking about bad things hurts all kinds of kids, all kinds of particularly vulnerable kids. And I don’t see how it does much to protect the safer kids, either.

I’m not sure what the solution is. But I think it is a problem.

[redacted] asked realsocialskills:

…For the not teaching disabled children that their bodies are “wrong,” what are ways to avoid that? The article described why it is bad, but what are things people can say or do when in therapy or school settings, the goal is to change or level up their abilities in some way? 

I think there are several things that help.

First and foremost, you have to act as though they already have value. Part of what that means is helping them to do things they care about, and not making those things into therapy. If everything someone cares about inevitably becomes therapy, it’s hard to keep caring about things. And it undermines their ability to understand they they already have value, even without being cured. Actions speak louder than words.

For instance:

  • If a kid likes trains, let them do train-related things for its own sake. Don’t make everything train-related into therapy.
  • Don’t make everything train-related into an incentive for complying with therapy, either.
  • And buy them train related things without requiring them to earn them with a therapy sticker chart
  • Let trains be trains, sometimes. And make sure the kid can count on being able to do thing they care about.
  • Kids need to have interests and to pursue them.
  • If therapy always takes priority, that’s a problem. That sends the message that therapy, and becoming more normal, is more important than anything else.

Involve them in decisions about therapy

  • Parents have to make certain decisions for their minor children, especially when they are very young
  • But they don’t have to make all of the decisions
  • And even when they do have to make the decisions, they can and should listen to what their kids think
  • If the child understands what the therapy is for, and says they don’t think it’s worth it, consider the possibility that they are right.
  • And if you decide they are wrong and that you’re going to make them do it anyway, tell them why
  • And if a kid dislikes a particular therapist, assume there’s a good  reason unless you have strong evidence otherwise. (Particularly if they don’t object to the therapy and are fine with other therapists)
  • And the older a kid is, the less appropriate it is to force them into therapy
  • Kids with disabilities need to grow up and learn to make their own decisions just like kids without disabilities do
  • Completely controlling their care is not conducive to their learning how to make decisions about it

Be particularly careful about surgery and painful therapy

  • If you’re making a kid do something painful, make damn sure you have a good reason
  • This goes double if the kid objects to the therapy
  • Because being overpowered and subjected to pain at the hands of large adults is traumatic
  • Sometimes it’s necessary, but it imposes a heavy price. Don’t ignore the price.
  • Don’t do it without a good reason
  • And, the older the kid is, the better the reason needs to be.
  • Teaching a teenager that they have no right to control what happens to their body is *really* dangerous.

Distinguish between leveling up abilities and normalization

  • This is hard to explain. I’m going to write more posts about it at some point

Don’t do long-term 40 hour a week therapy programs.

  • Kids need time to do things other than therapy
  • They also need space to explore and do things on their own initiative
  • They can’t do that if almost all of their time is spent doing therapy
  • And it’s ok if that means sometimes they watch the same YouTube video over and over for an hour
  • Or spin toys
  • Or sit on the floor not exercising

Make sure they know adults with disabilities

  • It’s hard to believe that you’re going to grow up if you never meet any adults like you
  • Adults with similar disabilities know things that you don’t
  • Even if you have similar disabilities, make sure your kids know other adults with disabilities
  • Kids need role models and clueful adults other than their own parents
  • (I’m not sure how this works for kids who aren’t likely to survive childhood. I think it’s probably still helpful, though.)

Make sure they know other kids with disabilities

  • Having a peer group is important
  • Growing up without one is really isolating
  • That said - don’t assume that kids will be friends just because they have similar impairments
  • Not all kids like each other, and that’s ok
  • Trying to force kids to be friends isn’t helpful

Talk about it explicitly

  • Kids need to know why they have therapy. And what it’s for. And what’s different about their bodies.
  • Kids who are disabled enough to need therapy know damn well they’re different
  • They don’t necessarily know that it’s not their fault, though
  • Or have any good language to think about it
  • People with disabilities are almost completely unrepresented in the media, and what little media we have is almost always dangerously inaccurate
  • This is confusing and disorienting, and kids look for the closest available concepts to make sense of things
  • For instance: Almost all kids know that bad kids get punished by being made to do things that are painful and unpleasant. 
  • If a kid is regularly made to do things that are painful and unpleasant that other kids don’t have to do, and no one explains why, it’s really easy for them to end up thinking they’re being punished for being bad.
  • And they can end up thinking they’re being punished for being bad for failing to do things they’re incapable of doing
  • This can happen even if no one ever says this to them; but most kids with disabilities get told this more or less explicitly at some point
  • (Eg: by religious people who tell kids that if they prayed hard enough they’d be cured; by teachers who tell them if they just tried hard enough they could do what the other kids do)
  • So talk about it
  • Even if you’re not sure they have receptive language

Don’t teach kids that their body is wrong

Something that can happen in therapy for disabled kids is:

People hold out hope that the kid won’t be disabled anymore, when they grow up.

So they push the kid as hard as possible in childhood, and tell them (often without saying this explicitly) that if they just work hard, their body won’t be wrong anymore.

This doesn’t work.

People who are disabled as children are usually still disabled as adults. Even if the therapy helped them. Even if they gained new physical abilities. Even if they learned things from it they wouldn’t have learned without it.

Even if they learn to walk. Even if they learn to talk. No matter what other skills they acquire. Their body is probably going to stay very different from most other people’s bodies, and far from the cultural norm.

And… part of living well as a person with a disability is accepting the body and the brain that you have, and working with it rather than against it. 

Because you can’t live in an imaginary body; you can’t live in an abstraction. You have to live your own life, as you actually are. And sometimes that involves medical treatment, sometimes it involves equipment, sometimes it involves therapy - but always, it involves reality. You can’t willpower yourself into being someone else. 

Disabled kids tend to get taught the opposite message, because childhood therapy is usually cure-oriented even for conditions that aren’t anywhere close to curable. It’s about normalization, much more than functioning well.

Then they go through all manner of hell unlearning this once they’re old enough that everyone gives up on pretending that a cure is going to happen.

If you’re responsible to or for kids with disabilities, do what you can to protect them from this. Make sure they aren’t being pushed to hang their self-worth on accomplishing things that are physically impossible or implausible. Help them to understand hat their bodies aren’t wrong. Teach them that they already have lives worth living.