Things that need saying

November 21, 2011 Leave a comment

This blog is where I write primarily about disability rights from my own experiences as a person with disabilities and (more recently) disability rights activist. I also have a BS in psychology, with a concentration in cognitive and neuro psych.

Since graduation, I have worked as a psychology research assistant and as a caretaker for children with assorted developmental disabilities.

I am currently in the process of further editing this blog to ensure the privacy of everyone I mention in it. I am saddened to have to omit and change some details, as I greatly enjoy accurate descriptions, but with this blog slowly gaining more attention, I want to be certain that I do not violate the trust that families and friends have shown me in sharing their stories and letting me spend time with their wonderful children.

ABA

Restless Hands:

This post is my new manifesto. I wish every parent, therapist, teacher, doctor, and autism researcher in the world had to read it. It may not be perfect, but it’s pretty darn close.

Originally posted on Unstrange Mind:

This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.

Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.

Autistic…

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Categories: Uncategorized

Open Letter to ABA Folks: On the Word “No.”

September 27, 2014 4 comments

If you have not done so, please read the introduction to this letter series before continuing: https://restlesshands42.wordpress.com/2014/09/27/an-open-letter-to-aba-folks-intro/

Overview of this letter:

Section 1: About the word “no” and why it is important

Section 2: Observed ABA practices in teaching “no” and why they are problematic

Section 3: Brief recap of section 2

Section 4: Practical suggestions for addressing these issues in ABA sessions

***

Section 1: About the word “no” and why it is important

“NO.” It’s one of our most powerful words. It’s one of the first words children learn that isn’t a noun. The “No!” phase, also known as the “Terrible Two’s,” is a critical part of human psychological development. In learning to voice a refusal, toddlers learn a huge amount about the world and themselves. They learn that they are individuals, with desires and preferences that are not always the same as those of their caregivers. They learn that they are able to express this difference of opinion in a way that others understand. And most critically they learn that, by voicing this opinion, they sometimes have the ability to change what happens to them. Anyone who’s ever had a toddler knows that sometimes they just say “no” to everything, out of sheer joy at having the power to refuse.

A major feature of autism is a difference in the way autistic and non-autistic people learn to communicate. Autistic children often take much longer than their non-autistic peers to develop speech or other formal communication methods (such as sign-language, PECS, or an electronic device).

Autism therapy often focuses on developing the ability to indicate the word “no,” for good reasons. Children who can’t use some recognizable form of “no” are a lot less happy than those who can tell their caregivers when they dislike something (a food, a place, an activity, etc.). Also, given no other means to express “no,” most children will eventually resort to tantrums or violence as a means of indicating displeasure. This can be physically and emotionally dangerous for both caregiver and child.

***

Section 2: Observed ABA practices in teaching “no” and why they are problematic

Ok, I assume you didn’t really need any convincing on those points. Now, let’s talk about how ABA teaches “no.” I’d like you to imagine a scenario for me. The vast majority of ABA folks are neurotypical (non-autistic), so I assume none of you have any difficulties with imagining.

Let’s say you’ve moved to another country, one whose language is particularly difficult for you to learn and use. Perhaps it has very different speech sounds than your native language, or another mode of communication entirely (humming through your nose, for example, or doing complicated dance steps).

So someone, or a group of people, is assigned to teach you the basic phrases and words you need to know in this language. The way they decide to teach you “No” (or maybe “stop”) is the following:

You’re stuck in a room with them, and they do things to you that you hate. They pinch you, or drag their nails down a chalkboard, or grab your personal belongings away from you, and they keep doing this until you say “no” to their satisfaction. Even if it’s perfectly clear what you’re trying to say, if you pronounce it just a little bit wrong, or stumble on one of those dance steps, they ignore you until you get it right. Sometimes, you did get it right, but they’re busy making notes or talking to someone else, and you have to do it again.

When you do get it right, they pat you on the head, say “good job,” and let you do something pleasant for a few minutes. Then they start up again. If you put your hands over your ears to block that horrible screeching noise, they hold your hands down. If you try to object in your own language, your objection is ignored. If you get fed up and scream or burst into tears or punch someone (and who wouldn’t, after enough of this?), or even just sit down on the floor and refuse to participate any longer, you get marked down for misbehaving. Maybe, if they’re nice and sensible, they start giving you longer breaks or do something that you don’t hate quite as much. Not much of a consolation, is it?

So maybe, yes, you will learn to say “no” in this new language. Maybe you’ll even learn it faster, in self-defense, than you would have otherwise. But what will you think about the people teaching you? Will you respect them, or just fear them? More importantly, will you believe that they respect you?

In addition, imagine that you’re a child, with little experience of the world. Your own beloved parents tell you that these teachers are here to help you, that you should obey them and try to please them. They call you their “friend,” and unless someone has already explained otherwise, you probably get it into your head that friends are people who are allowed to push you around like this.

(How many of you had a friend or sibling who took advantage of your trust or your admiration when you were little? They made you do something you hated, or got you in trouble for something they did, or tormented you in some other way… Do you remember how much it hurt? I do.)

You might even start thinking there’s something wrong with you. After all, these people are trying to help you, right? They like you and care about you and are experts. So maybe there’s something wrong with YOU for hating the lessons so much. You wonder if you’re too sensitive, too slow a learner, or just a bad person who isn’t worthy of more respect and kindness.

(I’m sure you remember feeling that way sometimes, too).

Or you start thinking it’s ok to make other people miserable, and treat your own friends this way. And then you probably get labeled “aggressive” or “antisocial” and get taken our of you classroom to go have more therapy.

***

Section 3: Brief recap of section 2

If all that made your head spin, let’s simplify it.

Can ABA therapy teach a kid how to say “no”? Sure.

Is it the fastest way? Maybe.

Is it worth the emotional frustration, destruction of trust, mixed messages about what “teaching” and “helping” and “caring” mean, and possible long-term hostility that can result? You tell me.

***

Section 4: Practical suggestions for addressing these issues in ABA sessions

OK, criticism only goes so far. I’m not here to make you feel bad; I’m here to help your jobs better. The following are my suggestions for teaching “no” or “stop” via ABA with minimal trauma.

1) Don’t do too much in one day. 1-3 trials per session, no more. Seriously. It may take longer, but it’s worth the wait. You can tell parents they are much less likely to see tantrums, aggression, and meltdowns after sessions if this is done slowly. (Technical note: whatever stimulus you use to elicit a “no” behavior is also going to be perceived as a punishment for whatever the child’s antecedent behavior was. Less technically, if you keep doing something a child hates, they’re going to wonder what they did first to make you do that to them. This can mess up other aspects of the session.)

2) Don’t give praise or additional reinforcement (rewards). The best, in fact the ONLY valid reinforcement for saying “no” is to have the other person respect that request. Don’t say “good job,” because expressing your needs isn’t a job or a task, it’s an essential human activity. Don’t make it less meaningful by assigning it the same status as answering an informational question correctly. I DO encourage you to (sincerely!) apologize to the child for doing something they disliked, or say something like “thank you for letting me know that you want me to stop” (especially if the word is replacing violent behavior!)

3) As soon as the child has a response that is recognizable as “no,” respect it. Respect it whenever possible. If it can’t be respected in a given instance, verbally acknowledge it (“I understand that you don’t like ____” — this also helps clarify the referent of the “no”) and explain why you are not going to stop just yet, or why they have to do the thing they don’t want to despite protesting (you’d do this with a typical child, right? Stop thinking of your clients as that different. They have plenty of typical thoughts and feelings– they just don’t express them the same way others do). You can use “no” as an opportunity for further engagement– offer alternatives for the child to pick (“Would you rather we did ___?”), or bargain with them (e.g. “We can stop in five minutes if you keep working with me right now”). Encourage the family to do this too, especially respecting the use of “no” as much as possible. This is crucial to maintenance. “No” will only become a true part of a child’s functional vocabulary if it is generally effective in eliciting negative reinforcement (i.e., it gets the child the result they are requesting).

4) If you need to shape the physical pronunciation of “no,” “stop,” and similar terms, do that later, separately, and via DTT that is reinforced by something utterly neutral to the situation. Don’t make correct pronunciation a high-stakes task. Again, less technically: if the child needs to say “no,” more clearly, have them practice mimicking your speech (with a bunch of words, ideally), in a game-like setting where they win stickers or candy or tokens for better pronunciation. That lets them practice saying the word more clearly without having to worry that their objections will be ignored if they aren’t performed perfectly.

An Open Letter to ABA Folks: Introduction

September 27, 2014 Leave a comment

Dear ABA therapists and technicians,

I’ve met a good number of you over the years. The majority of you love the kids you work with, and want to do well by them. So, for the sake of those children, please listen to some critiques of your methods. Before I start:

1) I do not categorically stand against the study of ABA, or its therapeutic application. I merely have a lot of specific concerns– concerns that come both from my own observations and from listening to dozens of autistic* teens and adults who have experienced these therapies first hand. I’m happy to give you a list of references (a good place to start is: http://jack-not-jacque.tumblr.com/post/48645978990/so-you-want-to-work-with-autistic-kids-primer).

2) I have a degree in Psychology from one of America’s top research institutions, and enough research experience to really understand how much we know– and don’t know!– about ABA and autism, given the studies that have been done. While my undergraduate focus and research were in neuropsychology, I did take classes in behaviorism as well. However, I try to avoid using too much jargon, in part to make these essays accessible to the wider public, and in part because not all programs use the terms exactly the same way.

3) If your response to anything I write is “Well, I/my program would never do THAT,” you are missing the point. Everything I discuss is being done somewhere, by someone, to autistic children and teens. If you agree that ANY of it is problematic, don’t waste your energy worrying what people think of you — worry about the suffering of all the kids who aren’t your clients. If you truly are one of the good ones, get back out there and fight against the rest. Stand up for the rights of those who have less power than you do. Talk to your supervisors and co-workers. Write articles. Bring up these issues whenever you meet autism researchers. Educate your clients’ parents. Send letters to your local editors. Talk to the teachers and counselors and psychiatrists and medical doctors who work with your clients. Help them understand just how badly some of these kids have been traumatized, and what they can do to minimize further damage.

Thank you. Together, we can do what I believe we all want to do: make a significant positive difference in the lives of autistic people.

***

* While some disability groups prefer person-first language (e.g. “person with autism”), the majority of people I have met who are actually on the spectrum prefer to term “autistic.” The term also encompasses those who have been diagnosed with Aspergers Syndrome and PDD-NOS. In general, whenever speaking to/about an individual, please use the terminology they prefer.

Yet Another Essay About Chronic Fatigue

September 17, 2014 Leave a comment

So, here’s the thing about living on the margins of disability with chronic fatigue and brain fog of uncertain etiology (i.e., unexplained symptoms).

Have you ever had a bad cold or hay-fever and you had to take a big honkin’ dose of Benadryl or Nyquil one of those other medicines that makes you all spacey and dopey? If you have, start with that (if you haven’t, I have no idea how to even begin explaining this to you. We might as well come from different planets).

Assuming you’ve had such an experience, think back on it. Think on the grogginess, the lethargy, the difficulty concentrating, the intense desire to just lie on the couch all day and not do anything that requires any physical or mental effort. You don’t feel up for much besides munching snacks and watching soap operas. Yeah, you can get up when you have to– you can, in fact, walk, talk, answer the phone, slouch your way into the kitchen for more snacks, check your email… but just barely, and not for any length of time. It’s not so much that it’s physically difficult to do any of these things, although you feel achy and clumsy and slow and would rather just lie still. It’s more that it takes serious and deliberate effort to remember what you’re doing, even while you’re doing it, and almost immediately afterwards the memory sinks away again into the soft mental blurriness of not-really-thinking about anything. It’s so very much easier not to do anything at all.

Imagine feeling that way most of the time. For at least part of every day, if not all day. Imagine fighting that feeling in order to get up every morning. Feeling that way as you try to make appointments, pay your bills, answer your emails, fix and eat meals and clean up afterwards, drive to work, do work, run errands, come up with the list of errands that need running in the first place… And on and on and on. Everything you can think of, you do while feeling this way, at least some of the time. Phone conversations with Mom. Putting away groceries. Deciding what to wear. Choosing whether or not to accept a friend’s invitation to dinner.

Imagine this. And then forget it, because what I’ve described so far only just touches lightly on what it is like to actually LIVE this way.

It says nothing about the guilt and dismay and despair you still have, 15 years after the fact, over losing yet another good friendship because, for the better part of a year, you just plain couldn’t muster whatever it takes to pick up the phone and call someone, anyone. Or answer a simple email. You tried to explain what depression means, how it eats away entire chunks of yourself and everything in your life, but few people can understand this unless they’ve experienced it themselves. It sounds unreal, even to you, even now. You wonder why you couldn’t have been a better person, why you couldn’t remember or focus or make the effort or drag yourself out of moping or whatever it was to spend a stupid five minutes making sure that someone else knew you valued them as a person. How can you explain, even to yourself, that even when you thought of doing so, the thought faded away mere moments later? That in some strange way you were barely aware of your own existence, let alone theirs?

And how do you square that with fact that, since no one stuck you in a hospital or an institution during that time, you must have been maintaining some semblance of a normal life all those months? You ate, you bathed, you dressed, you laughed, you went for walks, you went to work even! You appeared to be a fully functional person. Perhaps a somewhat lazy and irresponsible person, sure, but a real person all the same. You even felt normal most of the time, or at least normal for you. When huge chunks of your own life and self are missing from your awareness, you don’t really notice their absence most of the time.

You go about your daily business until something brushes a spider-web thread that jostles a memory, and then the bottom drops out of your world. The bill comes in the mail that says “3 months overdue!” or you get another phone message from the friend you can’t seem to keep in touch with, or a photograph slips from between the pages of a book and reminds you of an entire crucial section of your childhood that has somehow gone un-thought-of for ages. Or worse yet, that photograph has been sitting on your desk all along, and your eyes have passed over it time and again without registering the meaning behind what they were seeing. It’s a dizzying, jarring feeling when you realize these kinds of things, when you suddenly notice that time has been passing without your being aware of it. It doesn’t seem quite possible, no matter how many times you experience it.

But you suffer from a curious sort of out-of-sight-out-of-mind syndrome taken to the extreme, as though your mind were a pool of murky water and the vast majority of its contents visible to you only when they bubble up to the surface seemingly of their own will and very nearly at random. You can hold something at the surface to look at for a while, but the moment you let it out of your grasp it may sink again.

Enough stuff stays on the surface about your current life that you can pass for very competent in certain areas– work, school, a given hobby, a particular social group. The problem is that you can turn your attention from one of these things for what seems like mere moments, and an entire continent’s worth of material can sink, Atlantis-like, out of sight, so that you are horrified to rediscover, some weeks or months or even years later, that a major section of your life has simply vanished from your view, and all the important structures you had so carefully built and maintained have crumbled to driftwood. You’ve forgotten to follow up with that colleague you were so excited to meet, and surely that project you wanted to work on with them is long since finished. You’ve forgotten the name of the manager you worked with at the time, or even when you worked there, and most of the other details you’d need to put that job on a resume. And it’s probably too late to ask. No one you know even works there anymore, or if they do, they’ll be baffled to hear from you after such a long silence. How could you have lost track of something that once meant so much to you? You began to focus on a different area of your life, and in doing so, lost an entire other world.

Or it can be as simple as putting that bill down on your desk to go find your checkbook so you can pay it. Along the way something distracts you, and by the time you come back to the desk (without your checkbook, I might add), you’ve forgotten the bill’s existence, even though it’s sitting Right There, and eventually you’ll casually set another paper on top of it, or move it into the top drawer “momentarily” so you can use the space for something else, or even stick it to the fridge door with a magnet, where you will cease to see it because your mind glosses over unnecessary details most of the time, and when you go to get something out of a fridge, papers stuck to the door are surely unnecessary details. And then you get a notice that the bill is “3 months overdue!!” (how did that happen?!) and you feel like a lousy and useless person.

Or take the fridge itself. You bought a bag of peaches because you were excited to try a new recipe for some dessert. By the time you got home from the market, it was too late to cook, or you were tired, and you set the peaches in the fridge telling yourself you’ll cook them tomorrow. Only somehow tomorrow came and went, and you forgot about the peaches. And the next day you find a bag of peaches in the fridge, what a surprise! Oh yeah, that recipe! Let’s cook. But you look closer and the peaches have rotted and wilted away and you realize that somehow the “two days” since you bought them must have been closer to two weeks. You’ll have to throw them away and start over.

And after the fourth, or fifth, or is the fifteenth time that something like this happens, you wonder if you should just stop wasting food and money and eat nothing but canned soup and frozen microwaveable dinners for the rest of your life, despite hating the unhealthiness and the waste and all the packaging. You’ve tried all the little life-hacks. You left the recipe book on the kitchen table, where you’d be sure to see it, open to the page you needed. You stuck a note on the fridge saying “We have: PEACHES!!!” Sometimes these measures do work. Often they do not.

Why bother with anything? You can’t even invite someone over to share the peach dessert you finally cooked, because now your kitchen looks like it was hit by a tornado and smells like something died in it. Sure, you’re a normal, sane, responsible, decent adult person… who just happens to leave the dishes sitting in the sink for an entire week before washing them? Yeah, like anyone is really going to believe that. Would you? And it’s going to take three times as long to clean now as it would have if you’d scrubbed up right after cooking, and you know that, so why didn’t you just…?

Your life is a constant litany of “Why couldn’t you just…?” and “Why didn’t you just…?” and “Have you tried…?” and “Maybe you can…” Some from yourself, some from other people. The ones from yourself make you feel guilty and depressed. The ones from other people make you angry, defensive, and bitter. Sometimes you have tried. Sometimes you can’t muster the energy to try. Sometimes you mean to try, and forget. Either way, the fault always seems to lie, somehow, with you.

And inevitably, the vast majority of people in your life will come to the conclusion that you are lazy, or inconsiderate, or both. Never mind having friends over, do you have any idea how hard it is to find someone who is willing to LIVE with someone who regularly forgets to do the dishes? Who sits down to rest for a few minutes after eating and doesn’t even realize that she didn’t clear the table until it’s time for the next meal? Assuming you remember that there is a next meal to be had.

There are, of course, those days when you wake up with a bit of bounce in your step and do All The Dishes! and scrub out the sink and even mop the floor, and then suddenly it’s gotten to be 4 PM and you haven’t yet eaten anything or made any of the phone calls you needed to make and now you feel woozy because you didn’t eat and you have to go lie down for the rest of the day and probably won’t feel well tomorrow, either.

Then there are those rare days, or even weeks, where you’ve somehow gotten into a nice little groove– waking up, late breakfast, clean up after, run an errand or two, nap, check email, get an evening meal, relax with something fun to do, and you think “Oh, this isn’t all that bad after all. Sure I’m tired a lot and have to take things relatively easy, but it’s not unmanageable if I just keep myself on track. What a baby I was being all along! Why am I such a complainer?” and so on. And you start feeling marginally guilty about considering yourself disabled at all.

(After all, if there were something really, properly wrong with you, they’d have found it by now, wouldn’t they? All those specialists and blood tests and brain scans. And you probably wouldn’t have these periods of near-normality. Maybe you really are just lazy after all. At other times, of course, you feel even more crippled than your peers who have diagnostic labels. You know wheelchair users and cancer patients and people with severe epilepsy who do more in a day than you do. Lots more. How do they manage? Are they just stronger, better, more determined people than you? Or is there really and truly something wrong with you? There must be. But for now, you’re doing well, so why worry about it?)

Eventually, of course, there will be a scratch in the CD, a nail in the road, a missing step, and the whole thing will come crashing down around you, and you may not even notice it happening at the time. A skipped meal, a forgotten errand, staying up too late one night chatting with friends so that you oversleep the next morning, a change in work schedule, just doing a little too much in one day and not being able to do quite enough the next… and the whole system simply unravels around you.

And then one day you’re looking through the 27 million unread messages in your inbox and you spy the email from a friend you meant to respond to right away, only that email was from… six months ago. And there’s a tab open in your browser for an event you wanted to go to, and you looked at it every day for a few days and then it got lost in the shuffle and now when you find it again the event was… also six months ago. How did you come to this point yet again? What happened? Where did the time go? How did these thoughts spend so long underwater?

I can make to-do lists and charts and calendars and set my bills to pay automatically (yay technology!), but there’s no way to write down everything that needs to be remembered on a regular basis, and if I did manage to write it all down, I’d never have time to read it. How can I know what things I’ll forget, and when? I can’t. So what should I do? Maintain an immense spreadsheet of every friend, relative, and acquaintance, and when I last spoke to them? Not a bad idea, actually. I’ll get around to trying it soon, or at least starting it. I’ll lose track a quarter of the way into making it, I’m sure. Or make it and use it for a while before I miss logging one call and slowly stop using it all together, and it will become one more forgotten file taking up space in my google account, until by the time I ever find it again it will be so hopelessly out of date that I’ll have to start all over.

Do I sound defeatist? I hope not. I don’t feel defeatist or defeated, actually. Over the years, tips and tricks and practicing mindfulness have gotten me to the point where I can usually manage the most important stuff most of the time, and that’s a darn good start, really. And I have friends who understand, and/or struggle with similar issues themselves, and that makes a world of difference to my ability to accept myself. I still lose a lot, but not everything. I may not be able to do much, or do things very often, compared to most people, but I do greatly enjoy the things I can do, whenever I can do them.

I have my moments. Writing this was one of them. More of an hour and a half than a moment, really. And here it’s 2:30 PM and I washed half the dishes and scrubbed the sink but I still haven’t had breakfast… I think I’ll go do that now. Writing this helped. It got the words out of my head and into something that will remember them for me, something that can reach out and touch other people’s lives. I don’t think I said everything I meant to say, but I came pretty close. It makes me feel more real when I can do this kind of thing. More worthwhile as a person. And more hopeful, too, because it’s a reminder that I CAN do things, sometimes even amazing things, and do them well. Just not very often.

A Letter to My Body

Restless Hands:

This is a really valuable reminder. It’s equally important to remember that 1) “behavior” isn’t always voluntary and 2) even involuntary actions have reasons and causes that need to be understood and respected.

Originally posted on growingkidstherapy:

IMG_1405

A few weeks ago, my client, Ethan, came in for his session very upset and agitated.  We began our lesson and tried working through his irritation to no avail. Ethan was becoming more and more distraught. So, we took a short detour from our lesson to discuss the issue. I am a big stickler for doing lessons in RPM sessions – it is part of how RPM works – engaging the brain and then body in cognitive lessons. However, sometimes the situation calls for a change in plan and this was one of those days!

Elizabeth:  Let’s break for a moment Ethan. I can see you are really upset. What’s going on?

Ethan:  I AM UPSET BECAUSE I AM NOT KIDDING AROUND AND I CAN NOT HELP IT WHEN MY BODY ACTS OUT.

Elizabeth: Let’s try writing a letter to your body.

DEAR BODY,

I DO NOT LIKE YOUR BEHAVIOR TODAY!…

View original 465 more words

Normalization versus Normal Life

July 30, 2014 3 comments

So, the term “normalization” is something of a dirty word in disability rights circles, and especially in the autistic community. It generally refers to making a child put a lot of effort into trying to look, act, or speak in a more typical way for the purpose of making everyone else more comfortable around the disabled person. Proponents will tell you that, the more a child can “act normal” and “fit in,” the better they’ll get along with peers, the more education and career opportunities they will have, etc..

There is, of course, some truth to this: being able to “pass” for “odd” or “quirky” instead of “disabled” or “autistic” can have a lot of advantages, especially as an adult– from not having your doctor talk to you as though you were a child to being taken more seriously in the workplace. It won’t actually make you more friends, though, at least not real friends. And the cost to one’s self-esteem can be unbearable (if you can stand reading an emotionally devastating example of this, I highly recommend http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html).

But there’s another kind of normalization that’s important, and that involves others treating a disabled child like a normal person. This has to be done carefully, because of course you have to take someone’s needs and accommodations and abilities into account. But beyond that– too many people treat disabled children as though they are inherently fragile, or inherently tragic, or angelic, or younger than their age. Too many people seem to think that a disabled person can’t joke around, or use rude language, or have a bad hair day, or have questions about sex, or want to go to the mall with her friends, or even be shallow sometimes.

So I’m working on treating my clients like members of their age group. It doesn’t matter if a girl still wears a diaper at age 10: I can still compliment her hair and talk to her about fashion and current movies. Even if someone verbalizes at a two-year-old level and has only started using the toilet in the past year, if he’s over age 5, I’m going to make a point of saying that he’s going to the toilet or the bathroom, not the “potty.” I used to try and equalize us the other way around– saying things like “I need to go to the potty” about myself, and I still do this with younger children (as I suspect most parents do). But with older ones, I think it’s a form of respect to avoid using baby language, to take their preferences seriously, let them make choices whenever possible (even when it’s much quicker and easier to do it myself), and acknowledge that they are sometimes uncomfortable with the level of assistance they need. It’s hard to remember that a teenager who shows no shyness about my bathing her may still not want me to hold her hand in public. That someone who can’t lift his head without help still wants to be alone sometimes and have a feeling of privacy.

I suspect, from my observation of many parents, that it’s hard enough to learn this when bringing up a typical child. Loving parents hover, and embarrass their kids a lot with various forms of overprotectiveness and intrusion. How can you not have this habit after years of a child being dependent on you for absolutely everything? But a typically developing child will start to say things like “Aw, Mom, don’t cut my food for me. I’m not a baby anymore!” or “Aaaaahhh! Don’t come into my room without knocking!” And parents, slowly, get the message.

Kids who can’t speak may start throwing tantrums when they feel like too much is being done for them, may become deeply resentful of unneeded help and so have difficulty even accepting (emotionally) the help they do need. Or, if others keep treating them like young children, they may continue acting that young, being passive about things they are perfectly capable of doing themselves and not bothering to try expanding their skills. They may decide that it’s not worth the effort to assert themselves if those efforts aren’t taken seriously.

They need the chance, as all children do, to attempt things that are beyond them, to experience struggle and failure in order to build tenacity and self-confidence. They need to be respected by others in order to learn to respect themselves. They need to be treated as though others expect them to become responsible adults, or they will never push themselves towards that goal with the belief that they can achieve it. It’s a fine line for caregivers to walk. Inherently, children with disabilities have to work a lot harder than their peers, and they are all-too-often made to work hard at the wrong things (like trying to learn to “socialize normally”). So I’m generally not a fan of heaping even more work on them. But they do need, above all else, the kind of challenges that help us to grow as human beings– challenges to our judgment, our sense of morals, our courage, our level of independence. You can be equal to these challenges without being able to move a muscle, without being able to speak a word. But only if you are given the chance.

Children with disabilities deserve, as much as possible, a normal life. Most of the kids I work with will never look, sound, or act “normal.” But whether or not they get the opportunity to feel “normal” depends entirely on the actions of those around them.

The Evolution of an Appropriate Response

Here’s a story from some time ago, when I had just begun working with 7-year-old Rhythm, a nonverbal autistic boy.

On one of my earliest visits with the family, Rhythm held his hands up in front of him and began slapping them loosely one over the other– a type of flapping I had never seen before?

“He wants you to tell him ‘quiet hands'” explained his mother. My brain winced. Being new to the family, I tried for a pleasantly neutral tone and said, “I’m not a fan of ‘quiet hands.'”

“No, neither are we,” said Mom, “But an ABA therapist he had for a short time gave him a lot of negative attention for flapping his hands, and now he thinks it’s a game.”

His 10-year-old sister demonstrates. She grabs at his hands with her own, covering them briefly. “Quiet hands, silly!” Both children giggle. It’s obviously a joke to them.

My brain grinds its gears trying to wrap around this concept. My introduction to the concept of “quiet hands” was Julia Bascom’s outstanding essay (http://juststimming.wordpress.com/2011/10/05/quiet-hands/), which pulls no punches in explaining why “quiet hands” is abuse, plain and simple.

I try it once. “Quiet hands, silly,” I say in as joking a tone I can manage, batting ineffectually at Rhythm’s hands. Even as a joke, it feels wrong.

His mother obviously has similar instincts. When Rhythm comes up to her for the ritual, she cups her hands around his momentarily and says “quiet hands”…. then mock-whispers to him, as if sharing a secret, “It’s ok! I know you’re excited. I’m excited too.” She smiles at him and hugs his shoulders. My heart melts a little.

The next time Rhythm slaps his hands, I skip the “quiet hands” line altogether and go straight to “it’s ok to be excited!” instead. It feels better.

(He has a similar ritual with shrieking in excitement, then holding his finger to his lips. He likes when his mother mirrors the shushing motion. There, too, though, I’ve noticed that she reminds him that it’s ok for him to show excitement. I vary my responses to him shrieking and then telling himself to be quiet. If we’re indoors, I’ll say, “I know you’re very excited, and that’s good. But you’re right– that was a little loud for indoors. Let’s try and save the screaming for outside.” If we’re outdoors, I actively encourage him to make as much noise as he wants.)

There was still something missing, though. I could feel it at the back of my mind. Reassuring and reaffirming Rhythm’s right to express himself however he wants wasn’t enough.

Finally, I realized what it was, and I felt foolish for not getting it before. The most useless phrase in the history of child-rearing is “Do as I say, not as I do.” Because for children– ALL children– ultimately, words come in as a second language. The primary language of human interaction is behavior. Children don’t care what you SAY, they care how you ACT. They believe what they observe and experience above all else. What good would it do for me to say “It’s ok,” and “I’m excited too,” if I didn’t prove to him that I was telling the truth?

So the next time Rhythm began to flap and slap his hands in excitement, I flapped with him. I needed to show him by example that flapping in excitement is OK, is accepted, is even done by someone in an authority position.

And that’s what I did from that day on. I shared my own flaps with him. And we’d sit on the porch swing together, happy and excited, rocking and flapping in silent communication.

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