Once upon a time, I realize sadly, I would have thought there was something “wrong” with a child like this one. I would have been ill at ease around him when I was a child myself. Painfully timid in my own childhood, I had almost a phobia of anything that stood out from the normal and drew attention to itself, completely unaware that I was one such subject myself. I didn’t “speak” fluent neurotypical then, but neither did I speak autistic, at least not in the sense of being able to relate to most other autistic people (though I suspect one of my few childhood friends would have qualified for a diagnosis of what was then called Asperger’s syndrome).
Now I speak passable neurotypical, and quite diplomatically at that. I also speak passable autistic– perhaps not with perfect fluency, but enough to make friends among its native people. Neither language requires much conscious effort on my part, except in extreme situations. “Speaking” is a metaphor here– it’s much less about verbal language than about mental and behavioral language. Perhaps I bridge the gap so well because my brain’s native language is verbal– like that of most neurotypicals– but its syntax and vocabulary are closer to autistic.
Language is on my mind because I think my young companion at the beach today speaks a very different neurological language than I do. His mind, I suspect, does not yet think in words. He seems to understand words that others say, although I have yet to gain a sense of his level of language comprehension. He shows no interest in words, so far as I can tell. I should mention that today was only my third time working with him, but within a few hours of our first meeting (when I introduced myself by reassuring him that I wasn’t there to make him sit at a table and do things), he identified me as an acceptable adult to trust and ask for help with things.
A neurotypical observer of us at the beach today would probably have identified little interaction, much less cooperation, between us. The same observer might not have known we were playing and having fun, except by looking at our smiling faces. They would have seen, mostly, a young woman meandering along the beach with an elementary-school boy, about 1-3 meters (yards) from him at all times.
The boy jumps on the wet sand at the water’s edge, squats down to gather a handful, tosses it to himself for a few minutes, repeats. He stands, lopes a few feet down the beach. Bends backward to stare at the sky. Stands with his head and leg angled to one side, like a dancer caught mid-turn, looking down at his own heel. A phrase from a piece of autistic performance art comes to mind– “stiff and stimmy, stiff and stimmy.” One hand flaps rhythmically, sometimes hanging down loosely from the elbow, at other times up near his face, his elbow bent. (I wince, recalling that as children we used that gesture as a derogative to indicate intellectual disability). He dashes into the surf and back, jumps, twirls, crouches, kneels, kicks water, scoops sand, again and again and again. Sometimes he brings sand to his face, smells or tastes it carefully. He is smiling broadly almost the entire time.
The boy is never silent. He shrieks, growls, makes sound effects, gives bird calls, vocalizes vowels, and hums– sometimes a few notes, sometimes a recognizable line or two from a song. I repeat a hummed phrase with him maybe 10 times, obviously knowing it yet unable to place it, until I finally recognize it as a middle line from a Christmas carol. Over perhaps an hour, I recognize half a dozen songs– children’s songs, mostly, in both English and French– all hummed perfectly in tune. He does not say or sing any words.
I walk along the beach near him, not crowding. I stoop to pick up shells, rocks, or seaweed. I draw patterns in the sand with my hands and feet, dig holes, make piles and shapes of sand that the boy often comes over and takes from my hands to play with. Sometimes I hum what he is humming, or join him in a yell of excitement or joy. Sometimes I hum or sing something else. Often I am quiet. I, too, am usually smiling.
Here’s what a casual observer does not see: every ten minutes or so, the boy looks up at me, as if making sure I’m still nearby, and smiles when his eyes meet mine. Although he walks looking at his feet, he manages not to bump into anyone on the busy beach. Only once or twice does the water and sand he is flinging about come near to hitting anyone. On those occasions, I come over, tap his arm, and remind him to please be careful not to get sand on other people. When he wades deeper into the waves, with me walking alongside him, he comes over to hold my hand, not letting go again until we’re back in the shallows. He doesn’t try to go in the water any deeper than where he can stand firmly, a level of safety-awareness that even many neurotypical children lack. His mother comes over at one point and asks if he is ready to leave. He gently but firmly pushes her away. At one point he takes my hand and pulls it toward his jacket. “You want me to take your jacket off?” I ask, and take hold of a sleeve. He pulls away, then brings my hand to his jacket again. “You want me to zip your jacket up?” I guess, and he stands still while I do so.
Here’s what I almost miss: a number of minutes after I pick up an interesting rock, he picks up a rock. He tosses it to himself for a while, then hands it to me to hold. Usually, as I draw patterns in the sand, he ignores them. Sometimes he comes over and steps on them. I wonder if perhaps he wants me to stop, but then I realize he’s just trying to experience them in a tactile way. Much later, he begins using his own feet to make patterns in the sand. I assume this is something he’s always done until his mother expresses surprise. I realize he’s been paying close attention to me all along.
From time to time, I tap his arm a few times to get his attention and point out something– a kite, a pelican, a crab– or make a request (“let me take your shirt off before you get in the water,” “We’ve gone far enough– let’s head back towards your Mom now,”).
I learn about the texture and feel of the sand in great detail. The warm, fine sand that lies dry above the tidemark. Sand swirling in the water against my legs. Watery sand between my toes as the waves retract. The innumerable textures and behaviors of sand between wet and dry– it’s fascinating stuff, really, the physics of how it moves and dries, clumps and scatters and melts. I stomp, place my foot lightly, press down, try to make different depths of footprints. The sand here is wonderful– white and black grains of slightly different weights that settle into beautiful patterns, and golden flecks of mica throughout both.
It’s a perfect afternoon, spent with a perfect companion. I wonder many things, about what he knows and doesn’t, when he will acquire certain skills that most children his age perfected long ago, when he will begin to communicate in words. I wonder what occupies his thoughts, remembering my own childhood hours of telling myself stories as I wandered back and forth in the yard. I wonder what it’s like to think in something other than words. I wonder what kinds of things he should be taught now, and how best to convey them, and how I would know whether or not he understands. But I have no fear– either of him or for him. He is obviously intelligent, happy, alert, and generally cooperative and considerate when he is aware of what others want from him. I can’t understand how anyone could think there is anything “wrong” with a child like this.
The literal-mindedness of autistic people often requires that we show a certain extra care in the way we communicate with them. Particularly as children, they have not yet learned many of the social and behavioral rules that go unsaid, the ones most other people generally pick up through observation by about age five, the ones that become so obvious that before childhood ends, most folks have stopped even being aware of them as rules. Even among typically developing children, I often see parents get frustrated with their children for asking questions whose answers are assumed universal by adults. I am always sad when I see a parent snap something like “what do you think?!” or “you know better!” at a child who is asking an honest question. (True, sometimes children do ask questions who answers they know perfectly well, but that’s a different story. I hate, too, when a parent says “stop that!” to a young child without specifying what “that” is. So unfair! But I digress).
The other day, I was working with an autistic client, an elementary-school boy. We were at a fountain, and (not surprisingly) he showed every sign of wanting to play in it, which would have been a bad idea in such cold weather.
“Please don’t get your clothes wet,” I instructed as we approached.
As soon as he got close enough, he scooped up some water in his hands and poured it onto his own foot. Deliberate disobedience? Not having attended to my instructions? Lack of impulse control? Or…? A moment later, a thought occurred to me.
“Your shoes count as clothes,” I clarified. And then, because I remembered that many autistic children (as well as those with ADHD and other developmental disabilities) often do better with instructions that tell them what to do rather than what not to do, I rephrased my instructions altogether:
“You may get your hands wet, but only your hands, nothing else.” And he followed this instruction easily.
Now, this child is not perfectly obedient– no child is. He has a mischievous streak, a strong will, intense curiosity, and a frequent tendency to ignore the preferences of his caregivers. But at the same time, I suspect he sometimes gets labeled as disobedient unfairly.
When you give him a rule or instruction, it is common for him to do something that almost goes against the rule, but not quite. Children like this are often said to be attention-seekers, to “like getting a rise out of people,” or to always be “pushing boundaries” and “seeing what they can get away with.” This puts a somewhat negative spin on the situation, making it sound as if the child prefers to cause a certain amount of trouble. And perhaps at times this is true.
But let me offer a possible alternative explanation.
Imagine a typically developing boy of the same age. His mother sends him out to play on a muddy day with the instruction “don’t get your clothes dirty!” The boy thinks about this for a moment and wonders if the rule applies to his shoes as well. So he asks. In words. Verbally. He says something like “Does that mean my shoes, too?” And he gets an answer.
Such a simple and obvious exchange, we hardly notice it.
But now think of a relatively nonverbal child in the exact same situation. He has the same question in mind, but he lacks the words and the ability to ask the question verbally. He still wants to know the answer. And the only possible way for him to get the answer is to perform an experiment, to try the action that he is not sure is allowed and see how people react. He’s not trying to test limits or get anyone upset or cause trouble– he’s just trying to ask a question (as all children do), using the only method he knows.
So please, think of this possibility the next time you work with a child who seems to be trying to get around the rules or give you a hard time. They may just want to understand better, and it would be unfair to punish them for that perfectly reasonable desire. Please assume, at least at first, that the child has the best of intentions. Be respectful of the fact that they may genuinely not understand, may not have the same basic knowledge about the situation that you take for granted. And please take responsibility for your part of helping the child behave well: be as clear and explicit as possible when setting rules. Choose your words with care, in order to make the situation easier for a child who might be struggling very hard to do the right thing.
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, to the best of my knowledge. Program supervisors generally require some form of degree in psychology). Similar stated goals and methods. But observing the techs in action reveals important differences.
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 telling me,” she answers.
This kind of exchange happens maybe once or twice a week.
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, although some activities are done while sitting on the floor instead.
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. “nuh,” the child says quietly, sounding annoyed, not looking up, still intent on the activity.
“Stop,” the tech corrects, prompting him to use the specific word that has been pre-determined in his program as a “goal.”
“Stah,” mimics the client. 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 camaraderie, 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 despicable at best and outright psychological 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.
I need to remember how often, when a child doesn’t seem to understand what I am telling them, the real issue is that they are simply focused on something else, something they consider more important. This is true of all children– they focus on what matters to them, sometimes to the exclusion of everything else around.
How often have you heard a parent giving the same instruction time and again to a child who is playing — “don’t run!” or “use your indoor voice!” — only to see the child forget over and over as they get completely lost in their activity? Not to mention the things children ask over and over — “can I get one? Please? Pleeeeease?” or “are we there yet?” — to the frustration of parents who simply don’t understand that this question is ALL that is on their child’s mind at the time.
The other day when I arrived at Rhythm’s home to watch him after school, he dragged me down the street to a neighbor’s house. I already knew that he likes this house– they have a dog, and a rubber dinghy in the driveway that he loves to touch and rub and thump to hear the sounds it makes, and stairs up to the front stoop (he loves stairs, especially outdoor stairs). It appeared that no one was home at the time, so I was willing to let him romp around their front yard.
Usually, when he and I go walking, I struggle to find a balance between letting him enjoy exploring his own way and not letting him bother other people or do anything that would result in a confrontation with the neighbors. So, I’ll let him come up someone’s front walk and examine the architecture (he loves archways), but not knock on the door or walls. I let him press his face to the window of people’s cars but not their houses. I let him cross lawns but try to keep him out of flowerbeds.
He either doesn’t understand or doesn’t care about any of the boundaries and concepts of “private property.” Of course– I’m one to talk! As a child, I regularly snuck into other people’s yards to play. I didn’t have much experience with not being allowed into places, and I don’t think Rhythm has either. At home, he goes into all the rooms at will and has to be stopped from bursting into the bathroom to say hi to whoever is using it at the time. It isn’t surprising that he doesn’t understand privacy in that case– after all, he never goes to the bathroom alone, so why would anyone else?
At the neighbor’s house. We peered in the back gate by the boat. Rhythm tromped up the steps towards the front door with me in tow, hanging back a little reluctantly. They still had Halloween decorations and fake spiderwebs up in their front stoop, and he seemed to enjoy looking at those. Then he tugged my hand towards to door, meaning that he wanted me to open it or at least knock.
“No, we can’t,” I explained, “We haven’t been invited. Also, I don’t think they are home right now.” We repeated this process a few times– him wandering and looking around for a moment, then trying to get me to knock at that door. Me, telling him that we aren’t supposed to knock on people’s doors unless they have asked us to come over and visit, that it isn’t polite.
This kind of persistence is typical for Rhythm, and as I said before, for other children as well. The difference, when I work with nonverbal children, is that I don’t know how much of their persistence is due to various factors. In addition to the intensive focus that children give to their desires, it is entirely possible that:
1) They don’t understand that I am saying “no,”
2) They don’t understand WHY I am saying “no,”
3) They believe that I don’t understand their request,
4) They actually ARE asking for something different than I think, and/or
5) They have a counter-argument to the stated reason why I refused their request, but don’t know how to express it.
We tend to ignore those latter three possibilities with nonverbal children, and this is a problem. We easily assume that these children don’t understand us, when it is equally likely that we are failing to understand them instead. Verbal children can explain further if they perceive they are being misunderstood, and they also like to negotiate — “I promise if we get a puppy I’ll feed him every day!” or “Can I stay up for just ten more minutes? How about five?” or “I won’t be scared by that movie!” or “If you let me go to the party, I won’t ask for anything else ever again!”.
Nonverbal children, on the other hand, generally lack the ability to use that level of nuance, and are stuck simply making the request over and over in the hopes of getting their point across. And yes, it is possible that they are simply being stubborn– as all children are, at times– but we should not assume that this, or lack of intelligence, are the only explanations for their persistence.
I have a wonderful example of Rhythm using a counter-argument with me. I was getting him ready for his bath one night and he gestured, quite clearly, that he wanted me to get into the tub with him (presumably to make waves for him. He has me do this in the kiddie pool in his yard so that he can watch the water move, and I supposed he had no reason to assume that the bath is any different). Glibly, I answered “I can’t get in the bath with you, buddy! I still have my clothes on.” He very nearly rolled his eyes at me. Then he reached over and gave the hem of my shirt a quick tug, the way I do when I start undressing him. His meaning could not have been more obvious– “Ok, silly! Take your clothes off and THEN get in the tub.” He must think I’m not very bright sometimes!
I tried not to laugh– it was such a sensible response from his perspective. I wasn’t ready to try explaining propriety to an autistic 7-year-old, so I just told him, “Sorry, it’s against the rules for me to take a bath with you.” The experience definitely taught me a lesson about making flippant excuses! Now I always try to give him the most honest reasons that I can think of for why something has to be a certain way.
Rhythm had given up, for the time being, on trying to get into the house and was walking on the low stone walls around the flower beds. He adores balancing on any sort of ledge or narrow pathway, including ones quite high up in the air, and generally holds my arm or hand to brace himself. He usually has a pretty good sense of what’s within his abilities– although he also has a tendency to terrify his mother with his idea of “reasonable” risk! He was making a strange sort of throat-clearing/coughing noise and I asked if he was ok, thinking maybe he had gotten something scratchy in his throat. He ignored me, but seemed happy enough.
Eventually he led me around to the other side of their yard, where there was another gate in the fence. Again, he tried to convince me to open it — very persistent! I started the explanation again: We can’t just go in, it’s not polite, we haven’t been invited, etc., etc.. when my attention was caught by another odd noise. At first, I thought it was geese honking, perhaps migrating for the winter, and I looked up but couldn’t see any birds. Then I figured out that the sound was coming from somewhere beyond the fence, and wondered if Rhythm had noticed the sound before I did and was curious about it.
“Are there geese in that yard?” I wondered aloud, amused. I was mostly kidding, but Rhythm’s head shot up, and I realized I was on to something.
“Wait– do your neighbors keep geese??” I asked him. He looked at me intently, not confirming yet, but definitely wanting me to continue guessing.
“Not geese… ducks?” No response. He was still waiting for me to figure it out.
“Chickens?” He nodded excitedly. “Chickens!” I practically yelled, “Your neighbors keep chickens?!” He grinned.
Then something else suddenly made sense to me, too.
“Is that what you were doing before? I get it now! You were making chicken noises! Because you wanted to see the chickens!” His odd throat-clearing noises hadn’t been perfect chicken imitations, but they were pretty darn close, and far more realistic than the “cluck cluck cluck” noise that chickens make in all the kids’ songs he listens to.
And there you have it. I have no idea whether Rhythm listened to my explanations about why we couldn’t visit, or whether they made any sense to him. But I do know now that he was trying to tell me something, too, and I almost missed it because I was so focused on getting my message across. I assumed that I knew all the relevant information, and so I didn’t pay attention to the fact that he was trying to communicate with me. Or rather, I knew he was communicating, but assumed that his message was more simple than it actually was– just “I want to visit this house” in general, not specifically “There are chickens here and I want to see them.”
We didn’t get to see the chickens that day. I explained that we’d have to come back another time when the owners were home. With the promise that he would get to return and see the chickens at a later time, he let me lead him back to his house for a snack. I have no idea whether he would have been more reluctant to return home if I hadn’t ever figured out the purpose of the visit– but I certainly wouldn’t blame him if that were true! Disappointment is frustrating enough without the added misery of knowing that your request was never properly understood in the first place.
So I will try to remember to check my assumptions, and to put at least as much effort into focusing on what children are trying to tell me as I do into trying to get messages across to them. Mutual respect and mutual understanding– these are the bonds that humans build with each other. Empathy, compassion, collaboration, cooperation: all depend on taking the time and energy to discover what is important to someone else.
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.
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.