Last night, I fell asleep with a mild fever. My life chased me into my dreams.
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.
I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.
The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.
I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)
I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,
1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.
2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.
3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”
4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.
There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.
So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.
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.
(Sorry for the length of this post!)
My first few times babysitting Tangles (10-yr-old girl with global developmental delay, possible autism, ataxic cerebral palsy, and seizures) made me realize just how new I am at all this. I made mistakes, lots of them. I learned a lot, too.
The first hurdle was changing her diaper. I’ve changed Fishy, who is super-cooperative– lifting his legs for me and generally helping out as much as he can. I’ve also changed a typically-developing toddler who fights it every step of the way, screaming, grabbing for anything in reach, flipping onto his stomach, trying to run away the instant the diaper is off, sticking his hands into a dirty diaper if he can– a real handful.
Tangles’ mom demonstrated the changing procedure for me, once, before she left. She put her hands on her daughter’s shoulders and said “down!” and Tangles politely lay down on the floor and stayed still while mom mimed a diaper change. So, when getting Tangles ready for bed, I put my hands gently on her shoulders and said “down, please!” She just stared at me. I pressed down a bit, repeated the request in a few variations, told her it was time for a change, asked if I could change her diaper, etc.. No response. I started to worry.
Curls bounced over to us. “I can help!” she said. “Ok!” I agreed, assuming she knew something I didn’t about the exact right tone or phrasing to use, or something like that I was missing. Instead, she tackled her sister around the waist and tried to pull her to the ground. I stopped her quickly, imagining the much larger Tangles toppling over and squashing her little sister completely. But now I was at a loss.
I wheedled and pleaded. I tried using a commanding tone of voice. I held Tangles’ hands and gently explained that this was important. I pushed on her shoulders a little harder. No luck. I began to panic a bit. Silly as it may sound, it hadn’t actually occurred to me before that I might ever have to force one of the kids I work with to do something. I had this ridiculous image of myself as the Disabled Child Whisperer, always capable of getting the response I wanted through patience and good humor.
I’m sensitive to the difference between discipline and abuse, and to be honest I tend to lean away from discipline as well. I believe in enforcing rules and structure, but not in punishing children for the fact that they don’t have much self-control yet. The kids I work with are incredibly eager to please (well, apart from the one typically-developing toddler!), and I’ve never seen them do anything “wrong” on purpose. They make mistakes and I correct them, but I’ve never seen malicious or senseless behavior, and if they balk at doing what I want them to, I tend to assume they have a good reason and try to figure out what it is before moving forward.
I’m aware, too, of just how scary it can be for a child to be manhandled by someone bigger and stronger than they are. I hate the thought of overpowering a child, particularly a disabled child. They have little enough control in their lives as it is.
I also hate the thought of children being trained to be utterly obedient. This is, I learned recently, one of the primary reasons people with intellectual and developmental disabilities are at such an incredibly high risk for sexual abuse (something like 80% of these women and 60% of the men experience sexual abuse—and 90% of those endure more than one instance, with more than one abuser)—they are taught to do what they are told, without question, and are never taught that they have the right to control their own bodies and what is done to it.
I sat down with Tangles’ mom one night to discuss this, because I am scared for her. Tangles is, statistically speaking, in the highest possible risk demographic for sexual abuse. Fortunately, her mother is a strong woman, intelligent, and well-educated, which mitigates that risk. Tangles is a beautiful child and I hate to think about anything bad happening to her. But making sure that it doesn’t is going to require vigilance and much education for everyone involved in her care.
So, in a way, I was relieved that Tangles didn’t just trust me right off to undress and change her. On the other hand, I felt it would be irresponsible of me as a caregiver to let her go to bed in a soiled diaper. I also didn’t have much time and space to think—I had two rambunctious girls on my hands and it was already past their bedtime. Finally, to my relief, when I took her hands in mine, Tangles leaned back, putting her full weight on me (just playing, or trying to control the situation? I wondered), and slid down to the floor.
When I went to take the diaper off, she knocked her head against the ground—not hard, but deliberately, obviously telling me she wasn’t entirely comfortable with the situation. I promised myself that in the future, I’ll have a trusted caregiver oversee the first time I help a child with their intimate needs, to reassure them and to make sure I’m getting it right.
Then I broke another rule by saying one thing and doing something else. I apologized to Tangles for making her uncomfortable, but kept doing the thing I knew she didn’t like. I even told her that she was absolutely right, that no one should take her pants off or touch under her diaper without her permission, but the words were hollow because I was insisting on doing exactly that. I felt horrible, even though I talked to her throughout, step by step, letting her know when I was going to wipe, roll her to the side, etc., so that at least nothing I did would take her by surprise.
In addition, there was yet another problem I hadn’t prepared for—I wasn’t sure if I knew how to do this right! It’s been over a decade since I changed a girl’s diaper, and that was a baby. Now I was faced with a near-pubescent girl, and, in the midst of trying to figure out how to reassure her, my mind was racing with practical questions—did I remember to wipe front-to-back only? Am I wiping too hard? Not hard enough? It feels so different from when I’m wiping myself. Are the wipes too cold? How do I get the clean diaper under her when she’s too heavy for me to just lift her lower body? Am I hurting her physically or is she just emotionally uncomfortable? How would I know?
She didn’t fight me at all—I think I would have given up if she had, and called her mother– and made no protest other than those gentle head-bangs, but I still considered the situation unacceptable, and promised myself I’d never let something like this happen again.
Unfortunately, my troubles weren’t quite over yet. My instructions from mom were to get the girls changed into night-clothes before bed. At this point, I should have skipped that, but I was too frazzled to think beyond following the steps that had been laid out for me. So here I had just finished traumatizing this poor girl by changing her when I was still nearly a stranger, and a few minutes later, I was trying to take off her top, too.
She bonked her head against me, and said something that sounded like “oh!” or “oof!”—obviously a “No!” I took my hands off her, explained what I wanted to do, and tried again. More head-bonking. I asked if she wanted to do it herself. Bonk! I pointed out that her sister had just let me change her into a nightie. Bonk! I reached for her again and she put her hands flat against my chest and pushed me away. I let her.
She tried to run past me out of the bedroom, and I realized I’d screwed up again—I didn’t want to restrain her, but there was still broken glass on the floor in the living room where she’d knocked over and broken a jar earlier, so I couldn’t let her just run where she wanted, either. I compromised by letting her push me backward down the hallway, so I could let her feel in control and still make sure she didn’t go anywhere dangerous. At one point, she moved her hands up to my neck rather than my chest, and I froze in horror—not afraid of her choking me, but wondering where she had learned that, if she was imitating something someone had done to her. I still have no idea, but the thought gives me chills.
Once she realized I wasn’t pushing back, she calmed down. Finally, she let me take off her top and slip a nightgown over her head. Her sister helped her into bed and I rubbed circles on her back. As suggested, I gave her a book to hold, which she chewed on and tore at while I read to her sister. I tucked them in, and gave Tangles a stuffed animal to snuggle with. And then I went off to clean up broken glass and revise my opinion of myself as someone who knew how to handle disabled children.
Our relationship has gotten so much better since that night—I’m now not only “trusted” but firmly in the category of “favorite people.” She’s still not always thrilled to have me change her, but I suspect other factors are involved, since she seems thoroughly comfortable with me in most ways, including letting me help her bathe. I’m sorry that learning my lesson had to involve distress on her part, and I hope that I deserve her forgiveness for my mistakes, and for sharing a story about her that contains such personal information. I write these details only in the hope that my experience will end up helping others understand how to be more appropriate with the children (or adults!) they care for.