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 disabilities.

For my own privacy and that of the people I discuss in this blog, identifying information will be limited. I ask people who know my identity not to mention it in connection with this blog.

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.

Furthur nuances of ABA-based therapies

I’ve been seeing a lot of discussion online lately about ABA-based therapies.*

Can these therapies ever be done right? How can you tell when a therapy is damaging even though it is play-based, uses no aversives, and doesn’t seem unpleasant for the child undergoing it? Are stressful therapies ok in small doses?

Most people, including most of the ABA therapists I’ve met, agree that one of the most important things for any person to learn is how to say “No,” verbally or not. I’d like to describe two different ways I’ve seen an ABA technician work on this with an autistic client. On paper, the two ABA programs sound about the same (Note: (the people who perform the “therapy” sessions with the kids are trained by private companies and not licensed as healthcare providers or educators in any other way. Program supervisors generally require some form of degree in psychology). Similar stated goals and methods. But observing the techs in action reveals important differences.

Case 1:

The client is 11, minimally verbal (uses single words spontaneously and short sentences with prompting). Therapy consists of 2-hour sessions twice a week after school.

The tech treats the lesson plan casually. She and I and the client lounge on the floor of the living room, or go about the house working on various skills, most of them skills that are often taught by an OT or PT (dressing, using the toilet, preparing to go for a walk, eating a meal). At one point, the tech leans over and tickles the client lightly. The client pulls away a little, and the tech immediately prompts, in a friendly tone of voice as though giving advice to a friend, “You know, you can say ‘I don’t like that,” or ‘please stop,” or…”
“Stop, please,” says the client. The tech immediately stops, and smiles at the client,
“Thank you for tellin me,” she answers.
This kind of exchange happens maybe once or twice a week.

Case 2:

The client is 7, mostly nonverbal, and has 2 hour sessions several times per week. The client is required to sit at a desk for most of the session.

The client is engaging in a favorite activity at the table, mixing colors of play-doh together. The tech reaches over into the activity space, deliberately interrupting. The client pushes her hand away, and she ignores this, putting her hand back in the way so the client can’t continue playing. “No,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“No, stop,” the tech prompts (I ask later and find out that she is trying to get the kid to distinguish between “no,” for not wanting to do something, and “stop,” for getting someone else to stop doing something. Seems pretty unreasonable for a kid who uses only a handful of spoken words!).
“Nuh, stah,” mimics the client (the pronunciation is poor but the cadence is imitated perfectly, which makes me grin). The tech withdraws her hand, nods as if in satisfaction, and makes marks on her tally sheet, obviously grading the child’s performance. This process is repeated multiple times per session.

Case 1 isn’t perfect, but I think it’s a good shot at managing a necessary evil in a relatively decent way (the necessary evil being that, in order to make sure a kid knows how to object to things reliably, you pretty much have to provide or at least allow something they dislike for them to object to). The tech didn’t push, didn’t insist on a specific response, didn’t judge… just offered an alternative. The client was treated as a human being.

Case 2 makes me feel sick to my stomach. There’s no camraderie, no politeness, no explanation, and not even a pretense of respect for the client’s wishes. Just training, and frustration. This is more “pure” ABA– no distractions, no additional variables, no unplanned interaction between client and therapist. But what upset me most was that the tech seemed to care only about reaching the objective, having the client perform to a pre-set standard, and not about whether or not the client was experiencing and understanding the power and value of being able to make a request and have it respected. There seemed to be no acknowledgement of the fact that the goal of the work (and the only possible acceptable reason or excuse for these therapies at all) is to provide the client with a skill that is, at least to some degree, /useful to them/. Communication that will be understood by others, no matter the format, is one such goal, and I think worth even some pain, though of course it should be the minimum of pain possible.

Missing from both is another crucial marker of respect: apologizing to the client for doing something they disliked. And, in a larger critique, it is very problematic that, in this world, someone saying “please stop” is more likely to have their needs respected than someone who simply pulls away, and someone who pushes someone else away is more likely to be labeled as “aggressive” than “self-advocating.” That needs to change. In the meantime, there are better and worse ways to teach someone how to lodge a verbal protest. I got to see both.

* Note: there’s a lot of confusion about terminology, especially in America, where anything that can plausibly, or even implausibly, be labeled “ABA” gets the title so as to be covered by insurance companies. The briefest overview I can provide is that Applied Behavior Analysis (ABA), a particular subdiscipline of behavioral psychology, has given rise to a wide range of “interventions” and “therapies.” The classic ABA therapy is an aggressive and rigorous program of DTT, based on the work of Lovaas, who wanted to make autistic people become, or at least appear, “normal”… and cure men who acted in any way effeminate or homosexual. Most autistic people consider this to be despiccable at best and outright torture at worst. More modern approaches such as PRT now apply behavioral principles in ways that are gentler, more flexible, more naturalistic, and more enjoyable for the client… but their goals are often (though not always) still based on the premise that becoming more “normal” in various ways is a reasonable goal for autistic children. Most autistic self-advocates and their supporters are deeply uncomfortable with this notion, too.

Coping with Awkwardness: Sexual Play in Children

Anyone who thinks that children have no sense of sexuality (of some sort) hasn’t spent much time around children. As any parent discovers pretty quickly, children are curious about their own bodies, other people’s bodies, and the peculiarly appealing secrecy and sensitivity of their genitals.

Typical children learn, at a fairly early age, to keep their private parts more or less private. Children with developmental disabilties often take much longer to learn this– for several reasons, and not just because they take longer to learn a lot of things.

One reason is that they don’t get the same social cues about embarrassment (from other children) that typically developing kids do. There’s an age-range at which typical children obssess intently about potty talk and related topics, learn the rules about keeping certain things private, and then make a very big deal when other children break those rules, thus enforcing a certain behavioral code among their peers.  Children with disabilities are often not exposed to this kind of peer group, and may not even get any verbal input from others their own age, and may observe less consistent behavior among the peer group they are in (such as a special education classroom). Lastly, children with disabilties often have a diminished sense of privacy because they need help with personal care (such as bathing and toileting or diaper changing) for much longer than other children, and have to accept this help from a wider variety of people– parents, teachers, therapists, babysitters, and so on.

As a result, one thing I deal with quite often is the issue of children touching their genitals while I am caring for them. Children “play with themselves” in the bath, stick their hands down their pants, and so on. Sometimes the actions are definitely voluntary, sometimes less so. Male children get erections regularly, especially in the bath.

The question for me is how to react in these situations. On the one hand, a certain amount of sexual play is normal and healthy. I don’t want to discourage it or shame children for it– especially, I don’t want to make children feel embarrassed about the fact that I have to see their private parts at times, since this isn’t optional.  And I don’t want to teach children that their genitals are dirty or naughty or wrong.

On the other hand, it would not be at all appropriate for me to actively encourage or condone sexual activity of any kind… That would be a form of sexual abuse, because in some way I feel I would be participating in the activity, if only by acknowledging it openly.  Some of my clients are at the age where I feel it’s important for them to get some level of sex education, but it’s not my place to give that education unless the parent requests it specifically (maybe not even then– and certainly not without another adult present).

The main thing is that I feel sexual exploration should occur in private… but when do these children have privacy? Most typical children experiment with their genitals in the bath and/or in bed. But the children I work with are bathed by adults. Even the most independent of them generally have me in the same room while they bathe and use the toilet. At night, not all of them sleep alone, and many wear diapers to bed, which I suspect limit self-exploration.

So, my approach is to generally pretend I don’t notice. If the child is in the bath, I will simply look away if they seem interested in exploring their body. I do not wash them or touch them any more than necessary for their safety while they are having an erection or touching their genitals.

If we are in public, I will generally try to intervene as subtly as possible.

(The issue of crotch-grabbing is further confused by the fact that it’s often a sign that a child needs to use the toilet. If I see a child put their hand between their legs, my first response is generally to suggest a potty break.)

For some children, I feel that it is appropriate to offer a quiet, verbal reminder in a neutral (nonjudgmental) tone of voice, such as “Remember, it’s not appropriate to put your hands into your pants in public.”  Some kids undress in public as well (or even have clothing fall off!) and then, too, I might say something about keeping private parts covered. A lot of the older kids, at least, know the rules of bodily propriety intellectually, and I don’t want to embarrass them by calling excess attention to what they are doing– which they may be doing absentmindedly, or having forgotten that other people are around, or simply through failure to control their own actions (autistic people, in particular, often express experiencing a wide disconnect between what they intend to do and the actions they find their bodies taking).

Mostly, though, the best trick is to notice when hands are headed in the wrong direction and gently brush them away from going further, or give them something else to do (ask the child to clap or hi-five, hand them something, etc.– without ever mentioning that there was something else you DIDN’T want them doing). Called “redirecting,” this last tactic is also very helpful for helping people break habits (semi-automated activities) like biting their nails or pulling out their hair– you catch them before they are even entirely aware of what they are doing, and get them to do something else instead, and eventually their motor pathways get rewritten. It’s far more effective than drawing someone’s attention to something and telling them NOT to do it– like pointing out that someone shouldn’t scratch an itch, focusing attention on a forbidden action can make someone feel more compelled to do it! (This is, by the way, why nagging is such a terribly ineffective technique).

I think the success of any of these techniques depends on my own ability not to be (or at least not to act) embarrassed. I’m by no means perfect at this, but I’ve made a lot of progress. I think that so many of the mixed feelings many children get about privacy, sexuality, and especially masturbation, stem from their own parents’ discomfort with having to address these topics. Fortunately, regular childcare tends to cure you of two things: the ability to be grossed out easily, and the ability to be easily embarrassed!

One thing I have not dealt with yet (to my knowledge!) is the issue of any of my clients developing a crush on me. I’m open to suggestions on what to do if that situation ever occurs!!

New Clients

As always, I am so very behind on stories of my kiddos. Sadly, Rhythm has been moved to another care program (I believe he now has a nurse attendant) due to increased seizures. I do miss him. In the meantime, I have two new autistic kids on my roster– a moderately verbal 11-year-old girl with a relatively uncommon genetic disorder, and a 7-year-old boy with a diagnosis of classic nonverbal autism.

I quickly became one of the 11-year-old’s favorite people. Among other reasons, I like one of her favorite singers and can sing her most famous song fairly well. I am going to call this girl Euterpe, after the Greek muse of song, because she is passionately obsessed with music, particularly pop songs with female vocalists. I spend most of my time with her singing, or else making other sound effects on request (animals, vehicles, you name it). She lives with a typically-developing sister, whom I’ll call Calliope (muse of epics– she does love to write!), and a mother who seems to be in a state of perpetual motion, effervescing with ideas, plans that change every few seconds, and a humming, cheerful energy. I find her overwhelming from a sheer sensory standpoint. It’s a good thing Euterpe is someone who primarily seeks rather than avoids sensation!

I’m just getting to know the 7-year-old boy, but I find him immensely charming already. He buzzes around the apartment– climbing, touching, observing everything, never still, flitting like a hummingbird from one entertainment to another, hands a-blur in the air. His high, clear voice echoes the words others use in perfect intonation but an octave higher. He seems to want to take in the world– touching everything, getting on top of or above everything, and always bouncing, bouncing, bouncing… then concentrating intently on a single activity that catches his attention– a table full of playdoh, shapes to cut out of paper (his fine motor skills are amazingly good), cogs that fit together, a youtube video of Thomas the Train. He has a slightly older brother and a mom and dad. His parents are very affectionate with him, and his mother seems to know him very well in the sense of being able to predict his actions and moods in that way mothers can, but I get the feeling no one quite understands him, which makes me sad. I’ve sat through one ABA session with him and wound up more or less hating the behavioral technician. Euterpe’s ABA tech is much better, and her supervisor is pretty excellent as people in these programs go.

I’m also working with a 10-year-old girl with Down syndrome, which is a very new experience for me and not at all what I’m familiar with. She’s a very determined and independent young lady, and fortunately, I mostly just have to keep her company, which involves letting her lecture me on every topic she can think of and drag me around by the arm like a favorite doll. She’s a bit on the bossy side, and I’m working on figuring out how to assert myself with her without being confrontational. I’ll admit– having kids who argue back when I ask them to do something (instead of giving me a simple yes or no of some kind) takes getting used to!

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