Tag: therapy damage

Making the point about therapy more sharply

Real Social Skills

Three year old children in preschool are some of the least socially powerful people in our culture. But, they are routinely given a lot of choices about what they do and how they do it.

They’re not usually required to do painful and boring things over and over with no regard to their feelings or their experiences. And, from time to time, they can say no to something an adult had planned for them and have it stick.

Preschool teachers know that their work depends in large part on getting the willing cooperation of most of their students. That doing things to them over their miserable protests over and over is probably going to end poorly.

All too often, therapy for people with disabilities is less respectful, consensual, and individualized than the average preschool class.

If you’re exercising more control over a ten year old kid with a disability than you’d feel comfortable exercising over a nondisabled three year old child, you’re doing it wrong. All the more so if you’re doing it to an older child or an adult.

Another thing about therapy

Real Social Skills

A good percentage of people who need therapy only get it after repeatedly failing at things everyone around them can do. (Especially developmentally disabled children). This is often humiliating.

This means that therapy can be triggering. Therapy involves focusing on difficulties that someone has learned to regard as humiliating flaws. It’s important to keep this in mind when you give therapy.

Don’t expect someone to trust you right away. You have to demonstrate that you are trustworthy. You have to show them that you can be relied on to treat them respectfully. You have to demonstrate that you won’t ever regard them as broken, or make respecting them contingent on them progressing toward a cure.

And it needs to be true. You can’t just affect safety and kindness. You have to actually be trustworthy in a deep way, and let that show through your action.

You don’t get to decide when you have established trust; you don’t get to decide when someone receiving therapy should feel safe. It’s up to the person getting the therapy. (Even if they are a child.)

And if you understand this, you’ll be much more able to help people.

More about respectful therapy

Real Social Skills

This applies to both adults and children. Respect is really important.

Some of what this means is:

Understand that people who need therapy are going to have trouble with it sometimes:

  • People who have therapy have it because some things are hard for them. This is normal and should be expected in a therapy context.
  • Being in therapy doesn’t make things easy. It just means someone is getting help learning something
  • Expect that it’s going to be hard for the person you’re teaching to learn the things you are teaching them
  • And sometimes they will have trouble in ways you didn’t anticipate
  • When they are having more trouble than you expect, don’t get angry
  • And don’t make fun of them
  • And don’t accuse them of being lazy or wasting your time
  • And especially, don’t tell them that if they’d just *try*, they’d be able to do it
  • Help them find a way to figure out how to do the thing.
  • This means sometimes you might have to spend an hour or hours searching for a way to successfully explain something you think of as simple or obvious
  • This is part of your job. You’re there to help people figure out how to do things, and sometimes that’s hard.
  • It’s not ok to get angry at or frustrated with someone when they’re having trouble understanding something. If you’re feeling that way, it’s your problem and not theirs, and you need to find help dealing with it.
  • Treat people with consistent respect. That makes a huge difference.

Respect your client’s priorities:

  • Adults in therapy get to decide which things they want to work on
  • If they want help with one thing, and you think something else would be more helpful, it’s their call and not yours
  • It’s ok to tell them what you’d advise and why
  • It’s not ok to coerce them into doing what you want
  • It’s also not ok to treat them as less-than-human or unworthy of help if their priorities are different from yours
  • For instance, someone might care about reducing pain but not especially care about walking
  • Or someone might care about nutrition for cognitive functioning but not especially care about weight loss
  • And they get to decide that

Kids in therapy also have agency

  • Kids don’t get to decide everything the way adults do, but what they want still matters
  • It’s important to acknowledge that they have opinions and priorities
  • And it’s important to listen seriously. Sometimes they know something you don’t, and sometimes listening will change your opinion of what they should be doing in therapy
  • And sometimes, their opinions and priorities should be respected even if you think they are making a mistake
  • This is especially true of teenagers
  • Don’t equate kids with their parents. Sometimes kids and parents disagree. Listening to the parents isn’t enough
  • Do listen to the parents, though. They probably know relevant things about your child that you don’t know. Not always, but usually.

Some ways to avoid teaching children that their bodies are wrong

Real Social Skills

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

Real Social Skills

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.