The Evolution of an Appropriate Response

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Coda

The day after my last post, I brought my pair of woodshop headphones with me when I went over to babysit Rhythm. And when he started to fall apart, I said “I’d like to try something for you” and put them on him.

He loved them. He wore them for the majority of the afternoon. He discovered and taught me something new, which is that if you wear them while spinning (say, on a rope swing), you don’t get dizzy as quickly.

The following day, Rhythm was watching TV when I arrived, and we did that for a while. Then, he ran over to a shelf full of books and toys and began rummaging around– something I haven’t seen him do before. Eventually, he held up a pair of headphones, the kind you use for listening to music!

“You want to borrow my headphones again?” I asked. He nodded. He wore them for most of that afternoon as well, removing them only for brief conversations with me and to listen to specific sounds he enjoys.

He still had some stressful moments, but far less. I’ve suggested to his parents that they buy him a pair of his own.

Complicated Thoughts About Words

One of the hardest things for me to get used to when working with Rhythm is that he doesn’t like me to talk much. He gets overwhelmed by either processing language or the sound of human voices (especially female/higher pitched voices, it seems), or both. I don’t know the specifics, just that he often gets distraught if I talk to other people too much in his hearing, and even more so if we’re talking about him, even in casual, positive ways.

It is both understandable and odd that I have trouble with this concept.

I am, on the whole, an exceedingly verbal person. I spoke early, often, and at great length– and I still do. I enjoy describing and explaining things, narrating events, and helping people understand complex concepts. While I’m not averse to a comfortable silence, I enjoy talking quite a lot as well.

I also rely heavily on speech for many of the ways in which I show respect to the children I work with, especially nonverbal children. Things I do verbally include:

– Telling them when I am about to do something with or to them, like removing a piece of clothing, so that they can be prepared and have a chance to object.

– Asking them to express consent or preference. (Eg. “Would you like to go outside?” “May I put a jacket on you?” etc.)

– Voicing things they have communicated to me nonverbally, for confirmation or clarification. (Eg. Child signs =music= and I say “You want me to put on some music?” Child points to the fridge and I say “Are you hungry? Would you like something to eat?” — I often phrase things multiple ways, to reduce the chance of misunderstanding or them getting stuck on an unfamiliar word.)

I especially tend to try and problem-solve verbally, making it an interactive process. But today, I had something of an epiphany.

[a side note– Rhythm recently discontinued a seizure medication that was a heavy sedative. Since then, his parents have noted increased attention, alertness, energy, and motor control, but also a higher level of sensory sensitivity and more frequent frustration as he adjusts.]

When upset/approaching meltdown, he frequently signs =stop= and =scratch=, then scratches/claws anyone within reach. This can escalate to hair-pulling and biting, by which point he is usually in tears. It’s obvious that he’s in a great deal of distress, but it’s hard for us to tell what is triggering the distress sometimes.

Today, we had just gotten home from a walk, and he was starting to act worn out– not at meltdown yet, but at the “flop” stage– he plonked himself on the floor and starting signing =stop= over and over. I sat down with him and tried to work through it verbally, asking if something was wrong, if he could tell me what he needed, if he was hungry, in pain, needed to go to the bathroom, wanted a bath. I was asking these things calmly and slowly, trying to zero in on something I could do to make him less miserable… I hate seeing him so unhappy, and I was so at a loss for how to help him feel better.

He grabbed my wrists and scratched them, nearly crying. Then he took my hands and placed them over his ears. Something clicked in my brain, and I shut up. I finally understood that not only was he past the point of being able to answer my questions, but the very act of my asking was hurting him further.

So we sat there together in silence. After a moment, he made one of “our” faces at me, initiating a game we often play of making funny faces at each other. I responded in kind, and we made faces until he relaxed and smiled, at which point I tentatively asked again if there was something I could do for him. He asked for a drink of water. I nodded, and held out my hand to help him up.

When we went to the kitchen, his grandmother was cooking dinner, and began chattering at him cheerfully about what she was making. He fell apart again, dropped to the floor, and dug his fingernails into her leg. She suggested a bath, he agreed, and I hustled him away to the bathroom to get ready for the bath with minimal talking.

I’m honestly ashamed that it took me so long to figure this out– for a very simple reason. As I sit here writing this, I’m wearing ear-protection headphones, the kind you use around power tools. Because I had gotten to the point, as I occasionally do after a stressful or busy day, where I was afraid I would scream and cry if anyone else spoke to me– or even around me.

All sounds have the potential to drain my energy, but listening to speech that my brain has to process can be especially stressful, even for such a language-oriented person as myself. When I have limited processing power left, I can’t afford to spend it all on parsing information that other people are throwing at me. I was so exhausted by hearing their words that I could no longer hear myself think. All I wanted was for everyone to shut up and let me feel like myself for a little while.

Maybe that’s how Rhythm feels sometimes, too.

Communication, Attention, and Priority

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.

Processing, communication, and cooperation

Working with Rhythm today, I came to the realization that there’s a significant time lag in a lot of his responses that I suspect is common for autistic people (children and adults) and often gets read as uncooperativeness, inconsistency, or other negative traits.

Simplest example. I asked Rhythm if he needed a potty break and he shook his head “no” (he’s quite good with using the toilet, but regular reminders help, especially if his attention is on something interesting). A few minutes later, he signed “potty,” asking for a bathroom break, and I realized that it had taken him a few minutes to think about it, switch his attention from the current activity to focusing on signals from his body, realize that he was ready to use the toilet, and communicate that to me.

I’ve seen the same thing in other situations. I’ll ask if he’s hungry or thirsty and get no response– it seems like he’s ignoring me completely. But then within 5-10 minutes, he’ll ask for food or drink. And it often takes me a few minutes to talk him into doing something or switching activities. Getting ready for bed tonight was another example.

It was nearing bed time. He took me to the front door and said “muh!” which might have been a question about when his mother was coming home, but my best guess was “you want to go out and look for the moon?” which was rewarded with emphatic nodding– it’s so much easier to understand children once I know what things they like! We went out and looked for the moon, but it was cloudy out. Then I had to physically resist having him drag me off on an adventure for a few minutes before he finally agreed to go inside and take his bath (which isn’t usually a hard sell– he loves baths).

I rarely resort to using my adult strength against his, but it was partly a safety issue in this case, so I held him back while explaining that it was nearly bedtime and also we couldn’t just wander off at night leaving the house unlocked. For five or so minutes, you’d think he either wasn’t understanding me at all or just plain didn’t care, but then he stopped trying to get me to take him down the road and let me lead him back inside.

Caretakers, therapists, and teachers often describe this kind of behavior as “willful” or “stubborn,” interpreting these delays as the child is insisting on making their point before bending to the rules– and I think this is sometimes the case, especially in young neurotypical (non-autistic) kids. It’s necessary, to some extent, for children to do this– to assert their independence, to prove to themselves that they have some amount of decision-making ability in their own lives– although too much of it is definitely exhausting for caretakers (after all, we’re talking about the defining characteristic of the “terrible two’s” here– the “no!” phase).

But in autistic children, I think it’s important that we take into account the likelihood that the child is simply taking longer to understand, think about, and respond to what we say. And they are probably utterly bewildered (not to mention emotionally hurt) if they are punished or treated as a disappointment for not cooperating sooner.

Processing time. Response time. These things are not the same in autistic people as in neurotypicals. Many autistic college students have mentioned to me that they dread class discussions, or other situations where they are expected to respond to something within a matter of minutes after having the relevant material presented to them– to say nothing of the difficulty with breaking into a discussion when their attention is already completely dedicated to processing what others are saying, never mind coming up with thoughtful responses and navigating the subtle social cues of when to cut into the conversation. (There’s a truly excellent first-hand description of that experience here: https://thethirdglance.wordpress.com/2011/12/28/words/)

If we are going to design a world that works for autistic people– or even simply make the autistic people in our own lives more comfortable– we need to take these differences into account and remember not to jump to conclusions about someone’s thoughts simply because their response is delayed, difficult to determine, or changes after they’ve had more time to think.

Appreciating my job

I wish I had the time and brain-focus to write about every single time I take care of “my” kiddos. It’s a wonderful experience and I get so much from them. Sadly, I’ve been realizing just how temporary a pleasure it is. Not only do children grow up so quickly, but this job isn’t exactly permanent– for me or for the families I work with. Fishy’s family has been so busy I haven’t seen them in months, and Tangles’ family moved out of the city a month ago. I haven’t had a chance to see her since, although her mom and I remain in touch and apparently she’s doing very well at her new school. I miss them both terribly, though, along with Plumpkin, an actual baby I’ve been babysitting lately, whose family has also just moved.

My most fun lately has been spending time with Rhythm. I generally care for him in the late afternoon and evening, and it’s often after a frantic day. When I’m worn out from far too much verbal input (i.e. conversation) for my comfort, drama, and/or chasing a toddler around, it’s wonderful to be able to relax with someone who just wants to sit quietly doing soothing repetitive activities. I’ve begun to feel like babysitting him is downright therapeutic for me! Even on our most stressful days, he’s such a great kid that I always leave his house with a smile.

I love the way Rhythm says “oh yeah” for “yes,” and sometimes runs several of them together when he’s excited: “ohyeahohyeah!” — with wide eyes and eyebrows up, like he just got a pleasant surprise. I love the way he nods “yes,” too, pulling his chin up with an inhalation, then bringing it down to his chest sharply, decisively, as he breathes out, as if he’s just made a very important decision. He loves to laugh, but can also be charmingly sincere and almost majestic at times, like a little prince addressing his subjects. I love the way he solemnly offers to share his food with me, holding a bite out to me earnestly and waiting for me to either accept it or say “no thank you.” I love his ways of showing affection, like taking my arm and placing it around his shoulders as we sit together on the porch swing.

He’s a real joy to be around. I hope that he will always have people in his life who appreciate him as much as I do. Fortunately, this seems to be the case. His family adores him, and at every party they’ve thrown, I’ve seen how much their friends are fond of him as well. The other kids welcome him even when they don’t understand him, and he’ll wander in and out of their activities without anyone remarking on the strangeness of his behavior.  I wish every autistic child could be so lucky. And I count myself lucky to know him.

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.