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Autism and Communication

April 11, 2014 10 comments

I am increasingly convinced that we need to come up with a different set of milestones for how less verbally-inclined people learn language. Over and over, I see studies where researchers and educators work very hard (and not always successfully) to get autistic kids to meet the various stages of typical language development… contrasted with numerous stories in which autistic kids, teens, and even adults finally acquire language skills (verbal or written) in unexpected ways after years of ineffective therapy (well-known examples include Carly, Emma, Tito, Larry and Tracy, and more recently Drew, Mike, and Ethan).

Sometimes, the language acquisition is described as “sudden” or “unprompted.” Other times it is the definite result of deliberate struggle. But in either case, it seems clear to me that the professionals invariably mis-evaluate the person’s communication potential because they are looking for the “typical” developmental stages rather than acknowledging that communication and language skills may evolve along a different trajectory in non-neurotypicals.

My experience with nonverbal/preverbal kids also leads me to suspect that at other times, some of the “typical” steps are present, but in a form which often goes unrecognized. Attentiveness, for example, looks different in an autistic child (or adult!) than a neurotypical (NT) one. A NT child who is listening intently to an adult is generally seated, relatively immobile, and making eye contact, whereas an autistic child giving you their full and undivided attention may be pacing, rocking, or engaged in another physical activity… and almost certainly isn’t letting themself get distracted by trying to stare at the speaker’s face!

I recently got to spend a day with Tangles, after not seeing her in quite some time. Her mother says that she’s making a great deal of progress– trying to do more for herself, eating with utensils (albeit not very neatly), and verbalizing a lot more. I asked if there were any particular “homework” (therapies or programs) for me to practice with her, and she laughed and said “just do what you always do with her. It gets her to talk more.”

That surprised me a little bit, because I didn’t realize that what I was doing with her was anything particularly special. But I guess it is. Here’s the thing: I engage with her. I don’t just talk around her or at her or even to her (although I do all those things at times)… I converse with her. Even if her part of the conversation consists entirely of simple syllables like “ha” and “buh” and “foo.” I listen when she says them. I repeat them back to her, sometimes exactly as she said them and sometimes with variations. I get excited when she mimics my variations or comes up with ones of her own. I did this with Fishy too.

I also do the same pattern of interaction in nonverbal ways, especially with Rhythm. We hold conversations in patterns of clapping, stomping, face-making, or touching each other’s hands. We share attention and direct each other’s attention to things– feeling textures or watching patterns or listening to sounds together. These things are interactions, examples of joint attention, and without them, these children have no reason to even TRY communicating with me.

Think of what we do with babies. We crouch down at their level. We engage in things that interest them– playing peek-a-boo, shaking rattles, cooing in baby-talk, giving them the things they want like food, warmth, motion, smiles, bright colors. We connect with them, with what interests them. This is how they get the idea that they can connect with us in return.

Autistic children are all too used to having their interests (if not their needs) ignored by those around them. Parents often speak of their autistic children as being “in their own world”– but all children are. The difference is that there are standardized bridges between the worlds of NT children and adults– storybooks, games, and above all lots of verbal interactions. Many autistic kids, I suspect, would be just as happy as NT ones to share activities and special moments with their parents, but the parents are often oblivious to how to engage in the experiences that excite their kids, and instead resort to trying over and over again to drag autistic kids into activities that they do not enjoy.

Tangles did something special that day, and as usual, I came close to missing it. I had brought her a handful of brightly-colored drinking straws, because she enjoys chewing on plastic. She shook them out of their bag and started chewing one right away, babbling at me happily. I sat with her making sounds for a while. She played with the straws. Then she shoved one of the ones she was holding towards my face. At first I thought she was just playing with it. Then I suddenly realized: she was trying to put it in my mouth. I almost laughed, but then the implication hit me: she was sharing something she liked with me. It was as though I had brought her a box of chocolates and she had realized that the friendly or polite thing to do was to offer me one. So I took the straw in my mouth, said thank you, and chewed on it for a while. And I was incredibly touched, and proud of her.

Yes, the intent to communicate is there. We just have to be careful that we don’t miss it because it doesn’t look exactly the way we expected.

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Tangles is making communication progress!

Tangles and I had a wonderful moment of communication today. I was hanging out with her this morning while her mother came and went running errands. Tangles and I were both pretty tired, so we curled up together on the couch, just relaxing, doing her special fist-bump.

She likes touch, so I started rubbing her shoulders. I couldn’t tell whether or not she was enjoying it, so I said “You know, it’s ok to tell me to stop if you don’t like this. You don’t ever have to let people touch you if you don’t want them to.” I wasn’t sure she’d follow that, but apparently she did.

Tentatively, she knocked her head back against me and the couch– not hard, but deliberately (head-banging is her way of expressing protest, and usually it’s pretty forceful). I took my hands off her shoulders. She banged her head once more, then stopped. After a moment, she slowly leaned back against me again, relaxed again. I fist-bumped her to let her know everything was cool between us, and gave her a quick hug. I was so proud. In that moment, I envisioned a future Tangles, one who would advocate for herself, stand up for her rights, and communicate her needs to others.

***

The other day Tangles went to the doctor, who suggested putting her on much higher doses of anti-anxiety medication to stop her from head-banging and slapping people (she smacks people to get their attention, not to cause harm, but ataxia means she has little control over a motion once she initiates it, so it often seems like she’s hitting aggressively). Fortunately, her mother was as horrified by the suggestion as I was.

The head-banging can be dangerous for Tangles, and the slapping can be harmful to those around her… but ultimately, these are still good developments, signs that Tangles is coming out of her shell and letting other people know her preferences. Her mother and I talked about the possibility of getting a therapist to help her learn less violent ways of expressing herself, but we both agree that the expression itself is a critical step forward.

She’s making progress, too, thanks to her current educational setting, where she gets a one-on-one aide all day. It took her mother a while to learn enough about her daughter’s needs to advocate for an appropriate IEP, but now that she has one, it is making a world of difference. I’ve only worked with her for this one summer, but in that time, I’ve seen her learn so much.

Tangles didn’t hurt me at all today, which may be a first. She’s getting very good at her “gentle touch” motion– stroking rather than slapping– and used it without prompting several times to get my attention (usually, she hits first, then is corrected to stroking my arm). She’s learning to touch people’s shoulders and arms specifically, rather than head, face, or chest. She’s learning not to grab strangers, especially smaller children. She’s already good with animals, but lately we’ve met some very shy dogs, and she’s learned (with reminders) to sit down and stay quiet until they come to her for petting.

She’s using words more, too, although I often can’t tell what they are. When I can, I always either give her what she wants or at least tell her “I know you want ___, but you can’t have it right now because ___.” She kept going to the fridge today and standing with the door open. I’d offer her a few different food items and get no response (usually, when she’s hungry, she accepts almost anything I offer).  Then I’d close the fridge (I thought she might just want to stand in the cold air, but explained about it wasting electricity). Finally, she said “its-ah!” Pizza! I found the leftover slice and gave it to her.

***

The more I get to know Tangles, the more I realize how much of her apparently destructive behavior is purely a matter of poor motor control. She gets around so comfortably that I forget at times how little her hands do what she wants them to. I am now convinced that her tendency to rip up books is actually an attempt to turn the pages.

She’s intrigued by books. She doesn’t want to be read to– she sometimes whimpers when I try, or grabs the book away from me– but she wants to hold books and stare into them. She knows there’s something important about them, and she wants to know how it works. She also holds her mother’s laptop sometimes, surprisingly gently, almost reverentially, staring at it with the same intensity. I know she gets to use a computer in some capacity at school, and I think she knows that it’s a communication tool, an important one.

I have no idea how to teach her to read, and it’s not my job to try. But I encourage her to look on when I read with her younger sister, who’s in first grade, as we sound out each word with my finger under it. Outside, when Tangles sits on the ground, I draw letters for her in the dirt, tell her their sounds, and relate them to words I know she finds important– cat, dog, mom, pizza, her own name.

Sometimes she seems to be paying attention, sometimes not. I don’t push or insist– I just talk until I get bored or she moves off to do something else. Once I started singing the phonics song from the Apple Starfall educational program, and after a moment, I noticed she was humming along. They must use it at her school.

***

I learned about the phonics song from Rhythm, after a series of miscommunications that frustrated us both. See, his communication device has a button with an icon of an apple on it, that opens the menu for food items. He would press it, I’d ask what he wanted to eat. He’d press “computer” and I’d ask what he wanted to watch on his iPad, listing the favorite video categories I knew. He’d go back to pressing “apple,” but refuse suggestions of food. My confusion was encouraged by the fact that those two buttons are right next to each other, so when he’d switch from one to the other, I assumed he’d hit the other one by mistake and was correcting himself.

In retrospect, it makes perfect sense what he was trying to tell me and how. But until his mother explained that there was a series of videos called Apple Starfall, I had no clue, and we’d both just eventually give up. I was so relieved to finally understand, and apologized to him for having not gotten the request so many times before.

The more I work with children with limited communication skills, the more impressed I am with their patience, ingenuity, and perseverance in trying to tell us things. Their efforts get so little reinforcement– again and again they are ignored or misunderstood– and still they keep pushing for us to understand them. Anyone who’s going to work with children like this ought to be dropped for a few days into a country where no one speaks their language, with their dominant hand tied behind their back, just to have some idea what these kids are up against.

I tell the children I work with, over and over, that they WILL learn more language, that people WILL understand them better some day, somehow– don’t give up, keep trying, I want to you to tell me, show me, keep on making me listen to you until I get it right. You can do it, I know you can. I can learn from you, just give me the chance. Keep going, try again, and thank you, thank you, thank you for working at it so hard.

Education, Control, and Abuse

August 7, 2013 1 comment

My apologies for the length of this post.

***

How do we teach children what they need to know in life? What do they need to know?

They need, at some point, some measure of self-control: the ability to delay gratification, to think before acting, to modify aggressive instincts, to consider the well-being and desires of others, and to endure things that are boring or yucky or uncomfortable, from sitting through class to going to the dentist.

Observe the average 18-30 month-old child, and you will see what people are like without this control. Toddlers are 90% “id” — desire unmodified by conscience or inhibition. They grab what they want, become violent toward anyone they disagree with, and refuse to cooperate with anything they dislike. You can’t function in society this way. (Well, you can, but you have to already have a lot of money and/or political clout, and you certainly won’t have many friends).

At the other end of the spectrum is the person who has been trained to completely sublimate their own will. As a society, we consider this more acceptable, even necessary at times. Anyone who joins the military steps into this role– choosing to follow another’s orders above all else. But that is an adult’s choice to make, with adult reasons for doing so. There’s a reason why you have to be 18 to enlist. Brainwashing children to do nothing more than follow orders is abuse.

***

Finding the middle ground is hard, even with typically developing children. Cultures and experts disagree about when and how to discipline children, and about what level of self-control they should be expected to have at what age (either physical, such as toilet training, or psychological, such as not talking out of turn).

Ideally, I think the modern-day parent imagines explaining every rule and its reason clearly, and the child responding “Oh, that makes sense” and following the rules from then on. But anyone who has spent any time caring for a child knows that this very rarely occurs. Inevitably, one is faced with a child who has preferences that are incompatible with their own well-being (e.g., refuses to eat healthy foods), the well-being of others (e.g., refuses to share), or the general necessity of a given situation (e.g., won’t follow classroom policies, won’t get in the car when it’s time to go, etc. etc. etc.).

We want, at least in this day and age, for our children to have minds of their own. But we also want them to comply with the majority of our wishes. Somehow, we have to find a balance.

***

When your child does something wrong, do you slap them? Yell at them? Reprove them gently? Order a time-out? Restrain them physically? Options get more complex as children get older. They can be sent to the school principal, grounded, given detention, required to apologize or otherwise make reparations, assigned more responsibilities, stripped of privileges, guilt-tripped, spanked, publicly humiliated, and so on. And although many parents insist they know exactly how to fix their children’s misbehavior, I won’t believe that until I meet a child who behaves perfectly… and then I’ll just think I’ve run across some sort of “Stepford Wives” style of mind control.

The science of behavioral psychology can help. We’ve demonstrated, for example, that children mimic what they see and hear. The injunction “do as I say, not as I do,” is probably the most useless phrase ever used in child-rearing. So if we want nice children, we should be nice people. But we also know (perhaps more anecdotally) that doormat parents bring up children who walk all over them (and everyone else). Being nice doesn’t do the job alone; you need structure and rules.

We know that rewarding desired behavior works better, on the whole, than punishing unwanted behavior. If kids hear “no” constantly, they start to tune it out, unless you manage to break their will completely. But punishment has its place too– if you ignore your child punching other children to get their toys, that behavior is not going to just go away on its own. Unless the other kids beat up your kid and they learns their lesson that way. Letting your child learn from the consequences of their mistakes is a good strategy in some cases, but not in all. You don’t just let your kid jump off the roof to find out that they’ll break a leg.

***

I think we can all agree that, at some point, too much or too severe discipline becomes abuse. We know that abuse does not have to involve physical harm, just as mockery and the silent treatment are genuine forms of bullying. But we can’t seem to agree on how to bring up good kids (any more than we can agree on what to do with adults who break the rules).

It’s even harder to know how and when to discipline children with developmental disabilities. It would be abusive to teach them nothing, and just let them do whatever they feel like all the time. Every person deserves the opportunity to work hard and improve themself; this is something human dignity demands of us. Every person deserves to be taught to be as independent as possible (note: independence is not self-sufficiency. Being able to decide what food will be placed in your mouth by an aide is as much an act of independence as being able to feed yourself). And every person deserves the opportunity to interact with others, to be a part of society.

It is on this last point, I think, where we get a lot of the disagreements between the disability community and certain parents and therapists of disabled children, particularly those on the autism spectrum. These parents and professionals assume that, in order to have good opportunities in life (social, educational, career), the disabled child must be taught to hide as many markers of their disability as possible.

Now, it is true that societies are largely unaccepting of those who break social rules and mores. So rigorous programs are put in place to teach autistic children everything from “keep your pants on in public” to “say please and thank you” to “don’t drool” to “don’t stim” to “make eye contact.”

And somewhere in there, well-meant intervention becomes abuse. It becomes “Quiet Hands” and pathologized childhoods. It gives the messages, however unintentionally, “don’t be who you are” and “you do everything wrong.” It results in teens and adults who are depressed and self-hating and feel guilty for their every instinct, habit and preference. People who don’t know that they have the right to say “no” even when someone is doing something terrible to them. Their whole lives have been a constant litany of others telling them what to do, how to act, what constitutes friendliness, when to smile– how can they trust themselves, or even know their own mind, after all that?

***

But how do we determine which things are worth teaching? I counsel parents to forget about their child looking or acting “normal” and focus on them developing self-determination skills, but somewhere in there, kids DO have to learn to keep their pants on in public or they won’t be allowed to go to school. Or someone will call CPS and claim that letting children run around without pants is a form of sexual abuse, because nudity is such a serious taboo in our culture.

It’s important, as I’ve written before, for children to be able and allowed to say “no” at times.  Two of the most important stages toddlers go through are “no” and “why?” Saying “no” asserts a sense of selfhood, the understanding that it is possible to have one’s own preferences and to control aspects of reality by expressing those preferences.

“Why?” occurs when children contrast their newfound independence with the fact that they cannot always control what happens to them. I believe that the question “why is the sky blue?” is not just idle curiosity, it is shorthand for “help me understand why I cannot make the sky be any other color.”

When children with developmental disabilities refuse to keep their pants on, we need to ask why. Perhaps they are reaching the “no” stage later… or the “why” stage. Because these children often can’t verbally ask “why,” no one thinks to offer them explanations, and their questions about the world go unanswered. Taking off the pants may be a way to ask “why do we have to wear pants?”

Or it may be a protest, to something related (maybe the child wishes to be toilet trained) or unrelated (the parent refused something the child wanted, so the child refuses something the parent wants). Often, parents of a disabled child assume that the child either fails to understand the rule “pants on in public” or is simply being obstinate. But it’s very important to establish what’s actually going on.

Chances are, the kid understands the rule—most developmentally delayed children understand more than is immediately obvious. Is the child then objecting to pants for the sake of objecting, or because there’s a sensory sensitivity issue? The first may call for some form of discipline; the second for finding a different kind of pants.

There are those in disability rights circles who think we should also take this as an opportunity to challenge the very concept of pants and view them as a source of oppression. I don’t disagree on principle (why should anyone be forced to wear pants anyway?), but change is slow. For now, if you want to go out in public, you have to wear pants of some kind. Or perhaps leggings or shorts or a skirt. If there is a battle of wills between parent and child, offering choices may allow the child to feel heard and result in cooperation.

There are hard choices involved in teaching and disciplining a child with certain disabilities. How do you help a child develop independence and self-confidence when the majority of things they do are “wrong,” even dangerous? How do you ensure that they have time to just be themselves while also making sure you provide them with enough training that they will be given as many social and educational opportunities as possible?

***

The beautiful girl I call Tangles provides a good illustration of this point. Tangles is 10, with diagnoses of global developmental delay, profound mental retardation, ataxic cerebral palsy, and possible autism. Her mother and I agree that she’s smarter than most people think, but so far she’s got very limited ways of expressing it.

She’s very friendly, and likes to approach people and animals and touch them. The problem is her ataxia, which means she has trouble controlling or stopping a motion once she initiates it. The result is that when she reaches out to get someone’s attention, she doesn’t touch them; she hits them. And she’s pretty strong for a 10 year old girl. Her attempts at “hello” are sometimes rough enough to make me wince.

Her family is used to it. Her mother corrects “gentle, please,” and “careful, honey” again and again. When I’m at the playground with Tangles and her younger sister Curls, Curls apologizes on Tangles’ behalf: “she doesn’t mean to,” and “she doesn’t understand what she’s doing,” and the kids they play with regularly seem to have simply gotten used to being smacked on occasion.

But this isn’t a sustainable solution. Tangles is getting bigger and stronger. If she hurts someone badly by accident, or even gets past the age where adults are comfortable shrugging her actions off, I worry that she’ll end up being restrained or sedated regularly. I can’t bear the thought of seeing that happen to this vibrant and loving girl. So somehow, for her own sake, she has to learn not to hit.

I suspect most behavioral therapists would train her simply to keep her hands down, to not touch others at all… but that would be punishing her for reaching out and trying to interact. What a heartbreaking notion.  What if it kept her from wanting to socialize at all? I can’t help feeling there must be another way.

I often remind her (usually right after she’s managed to thwap some poor startled person before I could grab her) that it’s not OK to touch strangers who aren’t expecting it, to touch little babies, to touch people without their permission. I don’t know how well she understands. I remind her to reach for people’s bodies rather than their faces. We work on “gentle touching,” having her stroke her hand along my arm rather than striking out in a slapping motion. But I think often she simply acts on impulse, forgetting to follow the rules that she does know intellectually.

The other night she hit Curls in the eye. Curls usually responds to her sister’s slaps with a mild scolding, and occasionally hitting back, so when she starting sobbing, I knew Tangles had managed to hurt her worse than usual.

“No! Don’t hit! Not in the face!” I reminded her. She was already wandering off as I continued exhorting her to try and be more gentle, and a casual observer would think she didn’t notice, let alone care, that her sister was crying. Her face was serene, and she continued with her normal activities.

But then I heard her saying “oh-oh” (her version of “uh-oh”), which is something she says when she’s upset, and I knew she understood what was going on and was bothered by it. She’s still officially “non-verbal,” and it’s relatively rare for her to actually try and say something, so I knew this was a big deal to her, too.

“Oh honey, I know you didn’t mean to hurt her,” I told her and gave her a hug. Then I went back to comforting Curls and applying an ice-pack to her face… but my deeper sympathies were with Tangles, who doesn’t even have a way to tell her sister that she is sorry.

How many things, I wonder, does she feel bad about without us knowing? How much does it hurt when we scold her over and over for something she doesn’t mean to do in the first place? Does it hurt her to hear people say that she doesn’t know any better, when obviously, she does know and is trying to improve? How do we teach her all the things she needs to know without convincing her that she is a broken human being in need of constant fixing? How do we support her desire to interact with the world while trying to change the way she does it? I can only hope we’re on the right track.

Making Mistakes

(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.

Catching up about Tangles

I’ve learned so much since my first day with the 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability. But I want to take things in order, here, as much as possible.

***

The first time I met her, Tangles met me at the door with an excited shriek (she vocalizes a lot– often with loud whoops and yells) and arms out.

“Hi!” I said to her, introduced myself, and because I was unsure what the extended arms meant, I asked “Do you want a hug?” and opened my own arms for her to walk into if she wanted. Instead she grasped my hands and brought them together. OK, at least this was familiar ground for me– clapping games. Fishy loves those too. I let her clap my hands together, clapped her hands between my own, and clapped hand-to-hand in single and double “hi-fives.” I tried a few more complex patterns like Pat-a-Cake, which seemed beyond her grasp. I now suspect I simply did them too fast for her. Her mother showed me a specialty fist-bump that is her very favorite (I later introduced a variation on it that she enjoyed, so now she and I have our own version).

I noted that she was comfortable with casual physical contact, and later noted that she may have decreased skin sensitivity, like Fishy does– she doesn’t seem ticklish and enjoys touching rough textures. Her mother told me that she has pica (the desire to eat non-food items), but although I regularly see her chewing anything and everything she finds on the floor, I’ve rarely seen her attempt to swallow something that isn’t edible. I made a mental note to find chewable toys for her (every barbie doll in the house is missing bits and has its hands and feet chewed down to flat stumps).

She’s also a big fan of eating, and frequently wanders into the kitchen in search of easy-to-grab food. The first time I fed her, I followed her mother’s advice of forking up bites and placing them into her mouth. She was cooperative, but if I went too slowly, she’d grab a fistful of food off the plate instead. The second time, I guided her hand-over-hand to use the fork herself, which I think worked a little better. As with many things, I think tidy self-feeding is a skill she can learn if given sufficient practice. Her hands are quite shaky, though– I suspect she may prefer finger-foods whenever possible. Some days I do too.

***

The first time I visited the girls, their mother was there the entire time. We talked a lot about what I would need to do and went over all the standard basics– meds, allergies, emergency contact numbers, where things were kept, etc..

Both girls kept interrupting this discussion wanting me to play with them. I sat next to Tangles on the couch and periodically clapped with her, while also looking up regularly at Curls’ insistence that I watch her perform some gymnastic trick or other.

I tried to remember to include Tangles in the conversation wherever possible – regularly saying things to her instead of just about her.

When I asked about how Tangles communicates, her mother told me that she doesn’t yet. “Behavior counts as communication,” I said, “She may not use language, but how does she let you know when she needs or wants something, or if she’s upset?” Her mother gave a little more thought to the answer this time, but told me that Tangles doesn’t do those things very often. The few she could give me were:

– head-banging (against the floor, furniture, walls, or people) when upset.

– going to the fridge to get food for herself (which her mother said she does more frequently than she should, and her food intake should be limited to normal meals and snacks. She appears to be towards the upper end of a healthy weight range, and I suspect that she’s starting to get those teen-hormone food cravings.)

– starting recently, tugging on her diaper when it needs changing (a good sign of increased awareness of her own body — maybe she’s ready to start toilet training? I have yet to see her do this, though)

I discovered another. A little later, lost in conversation with the mom, I jumped when Tangles unexpectedly smacked my shoulder from behind with an open hand.

“Oh, I’m so sorry! She hits sometimes!” her mom told me. I reassured her– and Tangles– that it was perfectly OK.

“You just startled me, kiddo,” I said. And I turned to her and offered her my hands to clap with. Because I knew– she wasn’t hitting me. She was trying to touch me to get my attention. And she just didn’t know yet how to do it gently. I hope she learns this soon, because she’s big and strong enough that it does hurt to be smacked by her, and I’d hate to see other people misunderstand and restrain or punish her for her attempts to communicate.

Since then, her mom and I have talked about this a fair bit. To my surprise, the hitting– an open-hand smack, usually on someone’s chest or back– is a relatively recent thing that Tangles does both to get attention and to express displeasure. I had expected that it was a hold-over from a younger age where it was less problematic because she wasn’t strong enough to hurt anyone. The fact that it’s a recent development is highly encouraging for two reasons.

First, it shows a recent increase in her intent to communicate, which is very exciting. The fact that she wants to get people to pay attention to her needs and preferences and has figured out a way to get these things noticed is a very good thing. Now it’s just a matter of providing her with a more preferable way to do so– which, sadly, is not something I know how to implement. I’d especially like to see her acquire an unmistakeable way to say “no” or “stop.”

Second, the fact that hitting people isn’t a long-standing habit means it will be easier for her to adapt to doing something else instead. If she had a long history of getting the result she wanted from this action, she might be understandably reluctant to give it up. Now we just have to find something that’s approximately as easy for her to do and makes sense to her. I don’t think she means to strike me as hard as she does, but her mother told me that one aspect of ataxic cerebral palsy is the inability to control a motion once she has initiated it. I’m still, for the time being, trying to simply modify the hitting to a more gentle touch, guiding her hand to tap my shoulder lightly, but I really do want to talk to an expert about how to help her turn this into more formal communication.

***

I played with the girls while their mother got ready to go out for the evening. By the time the mom left, it was almost bedtime for the girls, so all I really had to do was brush their teeth and get them into bed.

They nodded off quickly, and I was left thinking this would be easy, that I had it all figured out. The girls both seemed to like me– what more did I need? I was in for some serious surprises.

Things That Are Difficult to Say: More about my first impressions of Tangles

I wasn’t, at first, going to write about this here. I was going to keep this blog for writing about Disability Rights and Disability Positivity and The Right Way To Do It. I wasn’t going to talk about my mistakes, my second thoughts, my doubts… not in public, anyway. Not because I was ashamed, but for fear of hurting feelings, and because I wanted my readers to believe that it is possible to be a perfect advocate, one who always gets it right.

But that isn’t fair and it isn’t helpful. You need to hear not just my conclusions about disability, but about the journeys that took me to them. You need to hear my mistakes and my failures. So I’m going to admit to something unspeakably horrible here, something that I need to apologize for.

Recently I introduced you to a 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability. But I didn’t write down all of my first impressions… that first entry carefully avoided the intense uncertainty I felt after my first few evenings with this girl and her sister, whom I’ve dubbed Curls.

I enjoyed spending time with Tangles. She was lovely, and sweet, and fun to play with.

But I kept looking for something more. I kept wondering how much she could understand, what was really going on in her mind… and if she really had a mind at all. A terrible, dark part of me kept asking, “what if she really is as stupid as her doctors think– a pretty, empty shell? What if there’s no one THERE? How would I know? Am I anthropomorphizing– imagining the existence of a personality and an intelligence where none exists? What if she’s thinking nothing at all? What if, for all my talk and beliefs and writings about equality and the rights of the intellectually disabled, I am wrong, and there are people who really don’t have any kind of mental potential? What if she is capable of nothing but simple needs and wants and mindless imitation? What is it that makes a person a person, and does she have it?” This train of thought ate away at me, kept me awake at night.

I am sorry, so sorry for ever thinking those things.

I am sorry for forgetting the rule: Presume Competence. For thinking that her intelligence was something that I had to see before I could believe in it.

It’s very easy for me to follow this rule in the abstract. I get angry every time I see the title of the news report on Carly Fleischmann (an autistic young woman who first communicated by typing at age 13 after her parents had tried numerous other communication methods with her to no avail): “Autistic Girl Expresses Unimaginable Intelligence!” “NO!” I think every time, “Her intelligence is not only imaginable– it should have been imagined and believed a lot sooner!” That was my first, immediate reaction to her story. So why is it that, face-to-face with a pre-verbal 10 year old, I had trouble imagining that she was intelligent? Or rather, how is it that I imagined her to be intelligent and then was afraid that her intelligence existed only in my imagination?

***

Allow me a philosophical aside here, and before I begin, let me remind me that the following are my personal views. I know many of you will not agree with them, but I hope that they will not cause you to lose respect for me. They are still open to debate, much pondering, and possibly major changes. I know that I have much to learn. This is the best I can do with what I know thus far.

I do not know what it is that makes human beings unique. I believe that we are, and that the reason why has something to do with our brains and how they work. I am a firm skeptic. I do not believe in a soul, or in anything else intangible that contributes to how special we are. I do agree with Immanuel Kant that every human being is invaluable, that each and every one of us has an intrinsic worth that is due solely to the fact that we are people. I believe that the human spirit, the result of who we are and what we think and do, is an extraordinary and glorious thing that is precious beyond words. But that still begs the question of what constitutes a “person” in the first place.

Because I do not believe in any supernatural thing that distinguishes a person from a nonperson, I tentatively conclude that the functioning of our brain is a critical factor. Because of this, I believe that a fetus whose brain is not yet developed enough is not a person (I still don’t know exactly what “enough” is). I believe that a person who has suffered brain death is no longer a person (note– this does not mean that it is ok to disrespect the body that is what remains of this person. One of the oldest traditions of the human species is that we treat our dead with respect). Treading a dangerous line with the disability rights community here, I find myself unsure that a fetus born with anencephaly (missing the majority of the brain) is a person either.

How much of a brain is required to make a person into a person? I don’t know. Definitely more than the brainstem, which provides only for breath and heartbeat. A human body is not enough– nor is it necessarily a limitation on personhood. I’m a science fiction fan who is interested in medical ethics. I ask myself– is a person whose genes have been artificially altered still a human? How about a cyborg? Is an android a person? The famous Star Trek episode that addressed that question (“Measure of a Man”) came to a disquieting and brilliant conclusion: we can’t prove that an android is a person. But neither can we prove that a human being is a person. At the risk of dehumanizing all of us, we must err on the side of assuming personhood rather than asking that it be proven. Which is, if you think about it, the basis of the rule: Presume Competence. The one I just failed at so spectacularly.

***

As a skeptic and a scientist, I am loathe to believe things without ample evidence. I was raised with spiritual beliefs, though not much in the way of religious dogma. Most of them did me no harm– some of them, I think, did. But nowadays I generally lean towards the notion that believing untruths is usually a bad thing, no matter how comforting they are. And I was afraid that seeing Tangles as a person was merely a comforting untruth.

But what does my scientist brain really say about people like Tangles? Everything I’ve learned about neuroscience so far suggests to me that anyone with cerebral hemispheres and a neocortex (essentially, those whose brain has developed past the point of anencephaly) is capable of sensing, learning, and cognition (thought). It has also taught me that we lack the tools to measure the potential of that learning and cognition, and that medical science tends to err on the side of assuming people — especially disabled people– are less capable than they truly are.

I have seen so many examples– like Carly, like Fishy, like numerous personal friends of mine, like the extraordinary woman I met not long after meeting Tangles (I’ll tell you about her in a separate post), like the cast of the documentary “Wretches and Jabberers,” all of whom have proven the experts wrong and shown that they can think and learn and do far more than the experts thought possible.

And in almost every one of their stories, there is a haunting question that hangs over me: How much more could they have done, and how much less might they have suffered, if only they had been offered the right tools and educations to begin with? If people had believed what they could not prove and presumed that these people had the potential to be something other than simple automatons, trained to do boring and basic tasks? How many more brilliant — or average– minds are wasting away now in institutions, or strapped to chairs in special education classrooms that don’t really believe they can learn? How many of them will never reach their potential simply because no one believes that they can? What if Tangles is one of them?

So let me conclude by saying that we should always, always, always err on the side of assuming intelligence, personhood, and unlimited potential. If we treat a person as though they have these things, and it turns out that they do not, then no harm is done. If we treat a person as though they do not have these things, and they do, then we have done terrible harm. So I will assume that anyone who is alive is a thinking person, worthy of the same respect as any other. Because anyone who is capable of thinking should be given every opportunity to learn, grow, and reach for the stars.

Easier Said Than Done – Rules for Interacting with Children (and Adults!) with Disabilities

When I first met Tangles, as with every new disabled child I meet (really, I suppose it should be every child, period!), I made myself the following list of promises:

1) I will always speak to her as though she can understand me, no matter how little evidence I have to support that hypothesis. Additionally, I will speak to her with respect and courtesy.

2) I will always act as though she can understand anything I say in her presence.

Granted, I’m lousy at this one, in the sense that I tend to forget myself and swear around kids, or talk to their parents about adult topics that may not be appropriate. I may also talk about the child in front of them, but never, ever, no matter what, to say something negative or complain about them. Questions, praise, and purely factual stuff only, and even then, I probably do far too much of it.

Don’t underestimate the importance of this rule. Children already worry enough and blame themselves enough. Remember how you felt realizing that you made your mother cry or caused your folks to fight? Remember how much the things they said about you in moments of anger or frustration cut to your heart? If you ever doubt that disabled children have these same feelings, go read this. Now imagine, on top of that, not being able to apologize, to ask for reassurance, or even to remind your dad that you love him. Think about what growing up that way could do to a child’s sense of self-worth. In the film “Wretches and Jabberers,” Tracey, who first learned to communicate by typing in his 30s, recalls that the first thing he typed was to tell his mother that he loved her. She cried. When I saw that part of the film, I cried too.

3) If she does not do what I ask her to, I will assume that she either cannot or has a reason why she does not want to (and that this reason is valid, whether or not I understand or agree with it.) While I may have to insist that she does something she doesn’t like, I will never accuse her, even in my mind, of being “badly behaved,” “non-compliant,” “stubborn,” “defiant,” “oppositional,” or “manipulative.”

I’ve known willful children– and I think, “good– they will grow up to be strong-minded, assertive adults.” All children have some inherent limitations in their abilities to be patient and thoughtful, due both to their inexperience with the world and to the fact that their brains are not yet fully developed. And all children are manipulative, for the simple reason that they have far less power than the adults around them, and so have very limited ways to gain access to the things they want and need. I know that children can acquire some very bad habits– such as selfishness, excessive impatience, and the tendency to whine or throw tantrums. I know too that bad habits in children are generally the result of their caregivers responding incorrectly to their wants and needs, including the need for limits, rules, and structure. Some children, more than others, seem to enjoy getting strong emotional reactions from their caregivers– including reactions like shock and yelling– but those needs for emotional input can be acknowledged and met in positive ways, such as giving the child more stimulating experiences.

4) I will not force her to do anything, or do anything to her, without good reason. Additionally, when I need to do something to her or make her do something, I will explain both what it is and my reason for insisting on it.

***

I think it’s a good list of rules. As I was about to find out, though, those rules are easier to write than to follow.

And as it has gotten to be 1:30 AM, I’ll have to continue this narrative tomorrow.