Archive

Posts Tagged ‘communication’

Just Amazing

Sometimes my job is difficult, frustrating, or annoying. Sometimes it makes me feel like the luckiest person in the world. This day was the second kind. And not just because I got to wear a bathing suit to work!

***

Less than a year ago, I would arrive at his house, pile into the car with him and his mother, and buckle his seatbelt for him. We would drive from place to place– park, playground, and so on– and try at each place to get him out of the car for some exercise and fresh air. Sometimes he would come out and play. Sometimes he would refuse to leave the car at all. Sometimes he would sob and claw at me or pull my hair. This never made me angry, but it did make me sad. Sad because I hated for him to be so unhappy.

Today I arrive at his house and he whoops with excitement. I lay out some laminated photos on the counter– beach, playground, pool, park– and call his name. He comes over, and without hesitation taps the picture of the pool.

“Ok!” I say, “We’ll go to the pool.” He grins. We get ready and head out to the car. By the time I get there, he’s already in his seat with his seat belt buckled, ready to go.

When we arrive, I ask him to carry his lunch box while I carry his backpack. He does.  We pick a bench and put down our belongings. He kicks off his sandals and runs into the pool. I don’t need to hold his hand. I join him in the water and watch him while his mom takes care of the toddler. 

***

He’s in a great mood, and is eager to interact with me (sometimes he wants to enjoy himself all alone and that’s ok too). He tugs my hands and tucks them under his arms. I bounce him up and down in the water to the best of my ability (he’s grown so much in the past two years!). I spin him around, and we both laugh with delight. I push off the wall of the pool with my feet, and after a few minutes he imitates me– another thing I couldn’t imagine him doing last year. We work together to find different ways I can hold him and move him in the water. He’s so relaxed, so happy, so affectionate. He could easily swim by himself, but he wants me to hug him, put my hands under his back while he floats, roll him over and over.

***

I notice him watching a younger boy who is practicing swimming underwater, pinching his nose with his fingers. I suggest to my client that he try it too, and explain to him about the need for exhaling or holding his nose so he doesn’t get water in it. In response, he dives, blowing bubbles like a pro. Obviously, he’s known how all along. What’s cooler is that he was displaying that knowledge for my benefit– letting me know that he knew. When I first met him, he seemed uninterested in communicating with me except to make requests.

***

He watches a group of kids his age playing catch in the water. This is another recent development– he used to ignore other children completely. I encourage him to join in, but I can’t blame him for hanging back. Only once have I witnessed him really playing with another child, and it was an autistic boy a few years younger than him. Seeing him watching this game, my heart aches for him. I know what it’s like to be the kid who can’t figure out how to participate, or is too afraid of rejection to try.

I get him a ball from his backpack, and he plays with it by himself for a few minutes while I stand by the edge of the pool watching. Then he tosses it out of the pool. This usually means he’s tired of playing with a thing, but on a whim I pick up the ball, call his name, and throw the ball back at him, expecting him to ignore it. To my amazement, he turns to look, reaches up, and catches it. 

“Wow! That was great! Throw it back!” I suggest enthusiastically, cupping my hands. He pauses a moment, not seeming to pay attention… then gives the ball another gentle toss out of the pool, but not really in my direction. I retrieve it and throw it, and again he catches.

“Throw it right at me this time,” I say, and again he seems to be ignoring me at first, but a few moments later the ball lands at my feet. The next time it almost makes it to my hands and I cheer as if he’s just hit a home run. 

I’m grinning like crazy. He’s playing catch with me. It’s beautiful. I don’t care about him doing this to be more “normal” or because it’s what the other kids do. I care because he’s having fun and he’s sharing that fun with another person. 

I’ve never before seen him choose to do any kind of structured activity with another person. Never seen him do something that involves taking turns, that involves this level of response to someone else’s actions. I want to grab the people next to me and tell them they are witnessing a miracle. I want to call the national news. I can’t imagine being any more excited if he were my own son.

***

It’s a day full of moments like this. He swings on the rope dividing the pool into sections. 

“Off the rope, buddy,” calls the lifeguard. He doesn’t respond. I call his name, and he looks up.

“Leave the rope alone please” I call, and he lets go of it immediately. His mother and I have always suspected that he understands most if not all of what people say (in more than one language, too). But only in the past 6 months has he started regularly responding with actions that make it clear that he understands. 

In response, I’ve completely stopped using the short, simplified sentences that I often used when I wasn’t sure of his comprehension level. Now I just talk to him like I’d talk to any other preteen, chatting about all kinds of random things.
Later, a few other kids are playing on the rope, and the lifeguard again instructs them to let go. To my surprise, my client also looks up at the sound of the lifeguard’s voice, seemingly alert to the possibility that he’s done something wrong. I reassure him that he’s ok where he is and he goes back to playing. 

His awareness of everything around him seems to be growing by leaps and bounds. Or perhaps he’s always been paying attention but hasn’t been able or willing or interested in responding. Whatever the change, it means I no longer have to hover over him and, for example, physically drag him away from that rope. It allows him more independence.
***

By now, I’m sure any autism parent reading this is dying to know how these changes were accomplished. So first, let me point out that he is no less autistic. All these wonderful new things he’s doing, he does them while stimming and shrieking, flapping around, sniffing and tasting things that he probably shouldn’t, and having meltdowns over tags in his clothing. He is and always will be autistic. But he is becoming a more communicative, interactive, cooperative, friendly, self-confident, and independent autistic person, and to me, that’s the true measure of success. And the best kind of success.

Because there’s been no special diet or medication or new therapy. In fact, most of those things were discontinued completely over the past few years. He has made these changes himself, with the support of the adults around him. 

Some of his independence came of necessity. There have been a lot of life changes for him that were totally unrelated to autism. One grandparent died and another moved away and his mother had a baby. As a result, there were a lot fewer adults tending to his every need or making demands on him, which gave him both more freedom and more responsibility. He’s matured a lot emotionally.

The other thing that happened is that he’s gotten some autistic adults in his life– first me, then a man who has a remarkable knack for visual communication. There wasn’t any lenthgy teaching involved– they’ve worked together for no more than a dozen hours. But somewhere in those few hours, there was an “aha moment” for both my client and his mother as they finally zeroed in on a method of communication that both could understand. There’s still a long way to go before he’ll be able to tell us more than a handful of things, but the breakthrough has happened and now he knows that it’s possible for him to make himself understood in a way that he never could before. Since that realization, I feel he’s become much more interested in learning new things.

I think it was crucial for him to meet adults who were somewhat more like him, who intuitively understood thimgs about him that his parents and teachers and therapists did not. It doesn’t take much. The vast majority of his time is still spent at home with his family, and his mother also provides the other crucial ingredients to his success: unconditional love and constant encouragement.

Accept. Love. Encourage. 

Keep accepting. Keep loving. Keep encouraging. 

Celebrate every new attempt, no matter how unsuccessful, every step forward no matter small. Not the fake programmed encouragement of tokens or rewards or empty praise, but genuine appreciation for the effort you see a child making. Acknowledge difficulty and setbacks. Children learn best when they feel safe and supported. When they are learning because it enriches their life, not out of desire for praise or fear of disaproval. Learning is its own best reward. Success builds confidence, and confidence leads to trying new things, and trying new things leads to more success. 
***

Here are things I say to him often:

Try.

You can do it.

I believe in you.

Try again.

Thank you for trying.

I’m proud of you for trying.

I know it’s hard.

You’ll get there. I know you will.

You can do it.

That’s better.

You’re making progress.

Keep trying.

It’s ok to fail. 

You can try again later.

You’re wonderful.

You’re the best.

You make me happy.

Keep trying. You can do it.

I love it when you _____.

***

Unconditional love. Unwavering acceptance. Unending encouragement. They are magic ingredients.

As I drive home from his house that afternoon, the radio plays a song that always makes me think of my clients. As Billy Joel sings “I love you just the way you are,” I find myself crying. I cry in happiness for the wonderful children in my life and the joy of seeing them grow and learn. I cry in sadness for every autistic child who doesn’t have unconditional love and acceptance. I cry because I am lucky to know that perfection, like beauty, is in the eye of the beholder, and I wish more people understood that. I wish every person in the world could hear those words when they matter most:

“Don’t go changing/ To try and please me…. I want you just the way you are.”

Advertisements

Communication is a collaboration

August 8, 2017 1 comment

It takes (at least) two people to communicate. The transfer of information does not happen in a void. Lots of professional people have written professional things about this, everywhere from brain injury journals to Star Trek fan forums. Here’s what it looks like (sometimes) in real life:

My client takes his mother’s hand, tugs. She follows him into the kitchen. He pushes her hand in the direction of the cupboard that holds cups and glasses.

“You want water?” she asks him. She doesn’t expect a reply, at least not the normal kind– a word, a nod. His response will require a little more decoding.

She takes a glass out of the cupboard, puts some water in it, hands it to her son as she and I chat. He sets it on the counter beside the sink. Takes her hand, pushes it back toward the glasses. She offers him an empty glass– perhaps he wants to fill it himself? He waves it away.

“You want me to get you something different to drink?” She opens the fridge. “Juice? Milk? Show me.” He closes the fridge. Brings her back to the cupboard. She is baffled.

“Maybe he wants to play with the bubble cup?” I suggest. The cup appears to have bubbles suspended in the sides, and sometimes he enjoys looking at it. We were blowing bubbles earlier in the day. It could be a matter of association. She offers him the bubble cup. No. He pushes her hand back towards the shelf.

It’s easy for people to get frustrated at a time like this. It’s frustrating to her that she can’t understand, that her son seems to be requesting something and then rejecting it. It’s frustrating to him that he can’t make himself understood. But they don’t give up. She knows her son isn’t doing this to be annoying. He’s trying to tell her something. She begins taking the cups down from the shelf, one after the other, and each time he pushes her hand up again. She knows the message is here somewhere, if only she can be patient and find it… and she does.

She brings down a mug, and her son stops pushing her hand, rests his hand on her arm instead. Her confusion clears immediately.

“Oh! You want tea!” I am surprised. I would not have thought of this. I had no idea he liked tea. He wants tea, on a hot summer’s afternoon. His mother makes him tea.

These moments of working together towards a shared understanding are so simple and so complicated at the same time. They can be as trivial as a request for tea, and absolutely crucial to building a common world, a relationship, a mutual language. It is beautiful. Communication is a basic human need. Every time I see someone succeed at it, I smile.

People Are Complicated

October 22, 2016 Leave a comment

Human beings are capable of logical, rational thought. But we are not inherently logical rational beings. We are emotional. We are complicated. We are self-contradictory. We are inconsistent.

It’s easy to forget this. We expect other people to Make Sense, by which we mean that we want to be able to understand the reasons behind people’s feelings and actions. And to some extent, we often can. We have the ability to emphasize, to imagine how we would feel in a particular situation and hence understand how another person in that situation feels. But we can’t always know someone’s situation perfectly. We can’t always imagine that situation accurately. And, of course, we don’t all have identical responses to the same things. We don’t always make sense to each other. We don’t always make sense to ourselves.

So I am amazed at how often I fall into the mental trap of expecting children to make sense. Children are, in fact, less likely to make sense than adults. They are also less able to reflect on, understand, and express the reasons for their emotions and actions. But many adults get annoyed when children act in a way that the adult can’t understand. 

It always amazes me how many adults seem to have completely forgotten what it was like to be a child, to have irrational fears and inexpressible longings and heartbreak over ordinary occurrences. Even though, as adults, we still have these experiences, only perhaps less often and more privately. Why does it never occur to us that a child might be crying because of the song playing on the radio, laughing at something they just imagined or remembered, or angry just because it’s been a long day rather than because of any specific event?

As with so many things, this expectation of an immediate and obvious cause for someone’s feelings is magnified in dealing with disabled children. I was at the beach with a 9-year-old nonverbal client today. We were walking along at the water’s edge when he suddenly began to cry.

I asked him what was wrong, although I knew he had no way to tell me. I asked if he was injured, hungry, cold, if he needed to go back to his Dad, if I could do anything to help… (While he doesn’t indicate yes or no, he will stop crying if I manage to figure out what he needs, so I try to list a number of possible solutions for him.)

When he simply continued to sob, it suddenly occurred to me to wonder why I was assuming a concrete and proximate reason. Maybe he was thinking about something that saddened or scared or worried him. His grandmother has been ill. He has a new baby brother. And there are a million things I don’t know that could be wrong. Maybe his parents had a fight. Maybe he has a mean teacher. Maybe his best friend isn’t in his class this year. Anything could be upsetting him.

And maybe it was something more immediate, but abstract. He spent a long time tossing a ball to himself today, and then we walked past a group of kids playing a ball game. Maybe he felt left out and wished that the other kids would play with him. Maybe he felt sad about being so different from the other kids. About not even knowing how to ask to join them. Perhaps he was just disappointed that he was walking with me instead of swimming with his Dad (they did go swimming, but not for as long as he wanted).

We found a bench and sat. His Dad came over and started running through the same questions I had– did he need a snack, a sweater…? He waved Dad away, turned his back. He told him not to cry, and, at my urging, went back to his swimming. 

“Don’t cry.” I hear that a lot, from many sources. It’s usually said in a sympathetic way, not a mean way. “It’s ok, buddy, dry those tears.” “Don’t worry, there’s nothing to be scared of.” “Aw… Cheer up, honey.” It’s a natural response, I think. We hate seeing someone in pain (there’s that empathy again). We want to fix it. We want to make it all better. And sometimes, we can. Sometimes sympathy and reassurance is enough. Love alone has dried many a child’s tears. But it can also hurt to be told that everything is ok when that just isn’t the case. So I’ve removed the phrase “don’t cry” from my vocabulary.

I put my arm around my client’s shoulder and sat with him and his tears. I spoke softly. 

I reminded him that he was loved.

I told him that everyone feels sad and cries sometimes. And that he would feel better eventually.

I told him I understand that life can be really hard, and that it was ok to feel upset about that.

I told him that I wished I knew how to help him feel better, but that sometimes it just takes time.

He reached over and gripped my hand. After a few more minutes, he stopped crying. He stood up and tugged me in the direction of the parking lot.

“Ok,” I said, “Let’s go get your Dad and tell him you’re ready to go home.” And we did. And also, I told him that he was a great kid and I love hanging out with him. I probably should have said it sooner. I’ll try to remember to say it more often.

Language Stories

No lesson here, just reminiscing. I have a client, age 13, with moderate-to-severe developmental disabilities. Very social, loves music, loves simple word games such as being asked what sound various animals make, or asking me my favorite color, etc.. I generally see her for 3-5 hours a week, and have done so for the past two years. And just the other day, I had a very disquieting thought. It occurred to me, suddenly, that I probably understand more of what she says than anyone else in her life. Which is both unacceptable and understandable.

You see, in addition to assorted other disabilities and delays, she has a very profound speech impediment. She sometimes uses an iPad to communicate, but not often, and not with much fluency. She prefers speaking verbally. And, provided I pay very close attention and have had enough coffee, I can understand perhaps 75% of what she says. I don’t think anyone else in her life gets more than 50%. Teachers and therapists aren’t in her life long enough to learn. Her parents, in addition to being very busy people, are not native English speakers. They speak English quite fluently, but when you’re trying to decode speech based on minimal clues, there’s no substitute for having grown up with the language.

It’s not just the fact that her pronunciation is hard to understand. There’s also her unique patterns of speaking. She tends to drop consonant sounds, even the few she’s capable of making when she really tries. She drops words out of her phrases, syllables out of her words. And she speaks in the way people jot down notes to themselves, where a few key words stand for entire thoughts or requests. This is where it’s necessary to know her very well, because even if she pronounced those words perfectly, much of her speech would still be utterly mysterious to someone who doesn’t know what she’s referencing.  There’s often quite a lot of guesswork even for someone who does know her.

If she comes to me and says “bus” (a word she can produce reasonably intelligibly), she might mean “I want you to make the sound of a bus” or she might mean “I want you to sing Wheels on the Bus.” Even if she says “I want bus,” I know she isn’t asking to ride on a bus. Sometimes for the song, she’ll say “duh bus” (the bus) or add the “round and round” gesture used in the song. Her BIs are working fairly intensively on getting her to give more information in her speech, so now sometimes she’ll say “sound bus” when she wants the sound. And if we’re already playing “make sounds of things,” it’s a good bet she wants a bus noise. She’s also pretty good with simple yes/no questions, so I can just ask. This is pretty simple. And many of her other shortenings are relatively easy to pick up, too: “A B song” is the alphabet song, “Gaga face” is Lady Gaga’s “Poker Face,” and what sounds like “Fie uh wayn” is Adele’s “Set Fire to the Rain.” “Uh dime it?” means “What time is it?” Some of her abbreviations make a lot of sense, especially for someone who struggles with pronunciation– cutting out articles and other words that aren’t as important to the meaning of what she’s saying. Others are less sensible and actually interfere with the meaning of what she’s saying. I don’t know if those happen because she doesn’t want to try and say certain words, or if there’s an actual cognitive disability in terms of her ability to recognize or remember or think in full sentences. Probably some of both.

***

Sometimes figuring out the reference is pretty hard. I often run though handfuls of guesses before hitting on the right one, and then I have to remember what that particular phrase means again in the future. Not as easy as it sounds, especially when many of those phrases are very similar, or sound very different from their correct pronunciations. When she asks “How was your day?” it often comes out sounding like “Wuh woo they?” I never would have figured out what it meant on my own; the BI who taught her that question filled me in on what she was saying, and I had to hear it a couple of times before it stuck in my mind. It doesn’t help that she sometimes ask “What’s today?” (as in, what day of the week is it), and it sounds pretty much the same. The way she says “color” is identical to how she says “flavor” (and I have no idea how to write it!). “White” and “grey” can both come out sounding like “why.” Something that sounded like a cross between “hammock” and “omelet” turned out to be a request for “Old MacDonald Had a Farm.” So I have to guess at what sounds she is trying to produce, what word or phrase or part thereof those sounds are meant to represent, AND what she’s trying to convey by using those particular words.

Sometimes she finds a way to give me clues, sometimes not. Once, she asked over and over for “ghee ew up,” to my utter confusion. My brain started trying out possibilities: Giddy-up? Something about horses? Do I know a song about horses that I’ve sung to her before? (Many of her requests are for songs, which at least gives me some idea where to start). Or maybe it’s something about getting up. Is she asking me to help her get up? “Give it up,” perhaps. Is that a song? It might be a pop song I don’t know; she listens to a lot of pop music. Maybe I’m assuming word breaks in the wrong places. The last two syllables could be “Europe.” All along, of course, I’m saying things like “I’m sorry, I don’t understand, can you tell me another way? What is it?”

Finally she added a gesture– clasping her hands and swinging them back and forth. She had to do that a few times before I finally was able to make the mental leap to a song we’d sung together a few weeks prior. She was asking for “London Bridge is Falling Down.” Really. Here’s the logic: her favorite line in the song is “Take the key and lock her up, my fair lady.” (And sometimes, when I’m feeling energetic, I hold hands with her on that line and swing our hands back and forth.) So she was quoting her favorite line, but omitting most of the words, leaving her with the phrase “key her up,” which I was only able to figure out once I knew what she was asking in the first place. Sometimes at this job I feel a bit like a cryptographer. Or a linguistic anthropologist.

***

Another time, she said what sounded like “WUH wiggen.” No clue. She said it a few more times, but I was drawing a blank. Sadly, I can’t get her to add information by asking things like “What is it?” or “Can you tell me more about it?” or “Can you show me on your iPad?” but experience has taught me that sometimes she can answer certain yes/no questions that help me narrow it down.

(And rarely, wonderfully, if it’s a song, she’ll try and sing it for me. Her singing is beautiful, but not much more comprehensible than her speech. She only ever pronounces the final syllable of any line, the rest being filled in with moderately accurate vowel sounds with “w” substituted for the consonants. And while she can hold a note pretty well if she’s singing along to the radio or YouTube, when singing alone she’s very quiet, and the melody fades the same way the lyrics do, only bubbling to the surface briefly in places. Still, I love her singing, and there’s always a special thrill when she hits a line in the chorus and I finally recognize what she’s going for and start singing it with her and her face lights up with a smile about a mile wide.)

But this wasn’t one of those times.

“I don’t understand. Is that a person?” I ask. Could she have a friend at school named Mulligan or Brannigan or something like that?

“WUH wiggen,” she repeats.

“A food?”

She says it again, “WUH wiggen.” I admire her persistence. And sometimes, if she says something enough times, my brain will finally match her sounds up to actual words. The cadence helps a lot. But sometimes, we both just end up frustrated. Sometimes I work to get her attention onto something else instead, if I really don’t have a clue.

“I’m sorry, I don’t know it. Pick something else.”

“WUH wiggen.” She’s starting to look annoyed, and I can’t blame her. Could it be a game?… An animal?

“Is it a song?”

“Yeah.” Finally, a clue! But I can’t think of any song titles that match up. It could be anything from a nursery rhyme to a new release. The odds are against me, but serendipity is on my side. I somehow finally parse the words as “love again,” recognize them as belonging to the line “we can learn to love again,” and cross my fingers.

“Just Give Me a Reason? Is that what you want me to sing?” And finally, there’s the smile. Phew! I think she heaves a sigh of relief along with me. I laugh at the utter absurdity of the mental journey we’ve both just taken in order to reach common ground. And yeah, I’m feeling pretty good about myself for figuring that one out.

By the way, the song is completely out of my range and I only know about half the lyrics. Ordinarily, I wouldn’t even try to sing it in the shower, much less where anyone can hear me. But I know that exchange was hard work for her as well as for me. I know it’s stressful for her to try over and over to make someone understand, with no guarantee of success. In short, she’s earned it. So I give it my best shot. Top of my lungs. And she smiles and smiles.

***

I wish more people in her life could decipher her speech too, but how could I ever explain to someone how to decode her communication? How could I teach them to seek out those mental leaps? I don’t even know how I do it, or how to improve. There’s no secret formula for this, no easy answer. I can’t tell you the number of times I’ve failed at understanding her requests. Innumerable apologies for innumerable disappointments. Or the times I’ve figured something out, and then forgotten it on another day.

I’m proud of the times I’ve succeeded. I’m proud of her every time she figures out a way to give me more information. The leap from just saying “bus” to saying “sound bus” is huge. I still don’t know that she could go up to anyone and say “sound bus” and be understood, but it’s definitely progress. I’m sure that eventually she’ll be able to say “make sound of a bus,” and then she’ll be able to request it from anyone, not just the handful of people who know her best. I’m looking forward to that day on her behalf.

Literal Language, Again 

September 16, 2016 Leave a comment

Anecdote from today. I was out walking with a teenage client and her BI. We’re working on teaching her to cross the street safely– stop, look, then walk. She’s not particularly interested in learning this. She’s used to having someone else take care of it for her, and she’s generally unenthusiastic about any task that requires her visual attention.

We reach an intersection, and stop. The BI prompts her to look to one side and then the other.

“Any cars?” She asks the client.

“Yes,” the client answers, although the street is completely devoid of traffic.

Now, this may well have been sheer laziness on our client’s part. “Yes” is often her default answer, and she tends to be a bit lax about yes/no questions. I have a hunch that the reason for this careless approach is that it only ever takes two tries to get a yes/no question correct, so why bother thinking about it too much? You say”yes” and then you get told “good job” or “try again.” Big deal. 

(I also suspect this client of deliberately answering wrong at times during easy tasks in order to spend more time on those tasks rather than harder ones– a metaphorical “dragging her feet” tactic. So far, I seem to be the only person who has noticed this. On the other hand, she’s tricked me a number of times into helping her with a task that I later find out she’s perfectly capable of doing on her own.)
Returning from my tangent here: there is another possible explanation for her wrong answer today, and it goes back to what I said last time about precise language. Language has a lot of subtext and context, and we process them so automatically that we don’t even consider the possibility that our assumptions may not be obvious to someone else. The BI asked the client if she saw any cars. And there were plenty of cars– parked alongside the road. Is it possible that our client simply didn’t think about the purpose of the question and so misinterpreted the connotation?

“Are there any cars coming towards us?” I clarified. The BI laughed as she realized the possible misunderstanding. Unfortunately, our client’s attention had already moved on to other things, so I didn’t get a chance to find out if my rephrasing of the question was useful. 

This is one of many reasons that I really wish ABA practitioners would give their clients brief explanations of tasks and their purposes before starting each task. It doesn’t do much good to teach someone to look both ways and report on the presence or absence of cars if they don’t understand that the purpose of this activity is to decide whether or not it’s safe to cross the street. 

I might as well take a moment to point out that there are valid arguments on both sides here. Reasons to explain a task briefly beforehand include: 

  • The client might be able to judge how important this particular activity is for them (eg., they might be more attentive if they understand that the purpose is to keep them safe); 
  • The client might be less frustrated with a seemingly meaningless task if they can see that it is a step towards a larger goal;
  • Offering an explanation is a form of courtesy and respect, of treating the client as an intelligent human being and presuming competence. If they can’t understand the explanation, there’s really no harm done, while if they can understand it, it seems rather rude not to offer one.

Reasons against include:

  • Letting the client decide how important they consider a task can backfire, as children’s priorities are not always the most sensible;
  • There is the possibility that the way the explanation is phrased will create misunderstandings that interfere with learning the task;
  • On a related note, having the end goal in mind from the beginning might lead to the client skipping important steps in their haste to reach the result;
  • Caregivers and therapists have to be more vigilant about laying blame on a client who fails at a task despite having had it explained. It’s very hard to remember that understanding the rules/steps and following them are separate skills. Also that being able to repeat the reason for something doesn’t necessarily mean understanding that reason. (I am reminded here of an anecdote in the memoir “Following Ezra” that goes something like this: the boy steals something from a classmate. To discourage this, his father tells him that when he steals, he disappoints both his father and God. The boy memorizes this lesson… and comes home the next day to cheerfully report, “Hey Dad, guess what? Today I disappointed you and God!” He had learned the words of the lesson but not the meaning, or at least not the implication, obvious to most people, that disappointing dad and God is not a good thing. He wasn’t a malicious kid, just an oblivious one. Fortunately, his father understood this and tried explaining it a different way.)

So, this post got a lot longer than I intended, and now I can’t think of a clever way to wrap it up. I hope I’ve given you something to laugh about and something to think about.

Bee-bee-beeeee

He’s one of those kids that people (myself included, I’m embarrassed to say) inevitably describe as being “in their own world.”* But that’s not true at all. Better to say that he perceives and interacts with the same world we do… he just does so very differently than most of us. We don’t “speak” the same mental language, and many things that most people take for granted just aren’t on his radar. I suspect that plenty of things that are obvious to him pass us by completely, too. He doesn’t often make eye contact, rarely looks at something that someone is pointing at. He doesn’t do social smiles, or acknowledge when people arrive or leave, or have any verbal language. It’s hard to remember sometimes that he’s actually very observant and quite clever.

He’s a musical kid. Hums a lot, whistles better than I do, and does some reasonably good bird calls. He vocalizes a fair bit, especially when happy or excited. But he doesn’t use many speech sounds, and almost no consonants. With one exception. One of his happy verbal stims goes something like this: “bee-bee-bee bee-buh-bee…”

I wondered about this for a while. Why “bee?” Granted, “B” it is one of the early consonant sounds babies learn, but usually after “Mama,” at least, and it’s usually “Bah” rather than “Bee.” “Gah” and “Dah” are also learned early, but I’ve never heard him say either of those. When the most likely answer finally popped into my mind, I couldn’t believe it took so long for the idea to occur to me.

See, he’s from a multilingual household, and the most commonly spoken language at home is… Arabic. Where the standard term of endearment is “habibi” (ha-bee-bee), which means “beloved.” His parents and grandparents and so on use his name as well, of course, but very often he is addressed as “habibi,” especially when people are happy with him.

It’s wonderfully endearing to me that, out of all the things he hears on a daily basis, this is the one he has chosen (consciously or not) to mimic. Maybe it’s his way of saying “I love you” back to his mother, to his family, to the world. I don’t know. But it sounds even more joyful now that I know its origins.

Bee-bee-buh-bee indeed, dear child, bee-bee-beeee…

 

* Autism expert Judy Endow writes on why she dislikes that phrase: http://www.judyendow.com/autistic-behavior/we-are-not-in-our-own-world/ http://ollibean.com/autism-and-measuring-normal/

 

A Day at the Beach in Autism-Land

April 10, 2015 1 comment

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.