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.

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

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.

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.

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.

Some ways to avoid teaching children that their bodies are wrong

A reader asked:

…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.