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Behavior Modification: Use Sparingly and With Caution

November 5, 2017 Leave a comment

I don’t categorically object to behaviorist methods. They can be very useful in certain situations, and can be used on neurotypical people as well as (or more than!) with disabled people. But behaviorism can also be extremely harmful when used inappropriately. 

I want to compare two scenarios. In both cases, a preteen client was being physically violent. However, the two situations required very different responses. In one case, a behaviorist approach worked well for everyone involved, including the client. In the other, it would have been catastrophic, especially for the client.

***
First scenario
[edited 11/6/17]

Lisa has a moderate-to-severe developmental delay due to a genetic condition. She often used to kick people to get their attention. She wanted attention all the time, and a busy family, no matter how loving and patient, cannot provide nonstop interaction. 

Frequently, her mother and brother would be discussing something– schoolwork, sports schedules, chores, errands, weekend plans, whatever, and would ignore many of Lisa’s attempts to engage them. Lisa can’t jump in and join a typical conversation. She is moderately verbal and very social, but can only understand and say short statements or questions. A conversation with her consists of many, many repetitions of her few standard exchanges, such as her asking or answering:
“How woo day?” (How was your day?)
“Whuh day id?” (What day is it?)
“I wike yooce” (I like juice)
“What’s your favorite animal?” “Dawd” (dog)
“Where is your bedroom?” “Ubstays” (upstairs)

So obviously she couldn’t be part of most household conversations. Lisa would then get frustrated and kick, which usually got a response, even if it was just someone scolding her or sending her to time-out. She did a lot of kicking.

This was a job for behaviorism because:

1) Lisa is able to ask for attention in other ways. This is an important prerequisite for reducing an unwanted behavior. You must have a viable alternative that will meet the same need.

2) The family had already tried all the standard ways to get her to stop: asking politely, explaining that it isn’t nice and that being kicked hurts, telling her no, yelling at her, giving her time-outs.

3) This was a bad habit supported by the behavior of other people — the family was unwittingly encouraging Lisa’s kicking (“reinforcing it,” in behaviorist language) by not paying attention to her until she resorted to violence. The environment needed to change at least as much as Lisa did.

So the ABA staff trained the family (Lisa has two hour ABA sessions three times a week). The family were told that if Lisa kicked them, they should ignore her completely and walk away (unless she actually needed help, of course. Behavior modification should NEVER interfere with a child’s needs.) However, if she used any acceptable way to ask for attention (tapping someone’s shoulder, calling their name, waving in front of them, saying “excuse me” or “hello”), they should respond, even if they just said “hi Lisa!” or gave her a high-five. They should also regularly remind her of ways to request attention nicely.

This approach isn’t ABA-specific. Think of how often we tell typical kids “you need to ask politely,” or “What do you say when someone gives you something?” as prompts to say “Please,” and “Thank you.” If the child is over age 3, I often just ignore a rude request (“Gimme that!”) and they immediately understand and correct themselves (“Can I have that please?”).

The ABA techs also helped Lisa practice positive attention-getting methods. They would take turns pretending not to notice other people and then responding to their name or a tap on the shoulder. They also practiced waiting patiently for a response when someone says “just a minute” or “hold on” or “wait.” They practiced ending conversations calmly, so now her Mom can say things like, “Ok, five questions and then I have to get back to work.” Lisa seems calmed by these practice sessions; she enjoys repetition.

Practicing good habits reduced Lisa’s frustration, which made her less aggressive. She rarely kicks for attention anymore, just when she’s actually upset or in a bad mood. That’s still not ideal (it’s still a lot of kicking), but she no longer thinks of kicking as a good way to start conversations, and that’s a big improvement. Her family has developed better habits, too, so Lisa gets more regular responses.

One downside: Lisa also sometimes kicks people when she wants them to go away, and this behavior is reinforced by people leaving the room when she kicks them. She does know how to say “Leemee ‘lone” (leave me alone), and now we also need to encourage that more.

***
Second scenario:

Charles is profoundly autistic. He is completely nonverbal, with poor fine motor skills, and has only recently learned to use a small handful of photographs to request concrete things: Bathroom, Pretzels, Playground, Beach, Home, and a few others. This development has improved his mood greatly, but it’s obvious that he’s still got a lot on his mind that he can’t express.

When upset, Charles tends to scratch people and pull hair. He is never violent unless he is clearly distressed; often he starts crying when lashing out. Sometimes I can figure out what’s wrong, but not usually.

He recently went on a nature walk with his ABA tech (he has two hour ABA sessions five times a week). His mother was furious when she reported to me. Apparently, every time he scratched the tech, Charles was told to sit down. “Why should he have to sit?” she said. “He is not a dog! He isn’t being naughty! He isn’t hurting her for fun. He’s trying to tell her something.” I agreed.

Here’s why an ABA approach is NOT acceptable here:

1) Charles clearly understands that people don’t like being hurt, and uses violence as a last resort. This isn’t a bad habit or just mean or petty; it serves the very important purpose of indicating that something is seriously bothering him.

2) Charles currently has no other way to communicate his distress. If he feels sick, or frightened, or has nightmares, or if someone bullied him at school, he has absolutely no way to tell anyone. The closest he can get is to show us that something is wrong. Punishing him for scratching only teaches him one thing: that instead of trying communicate his unhappiness, he should suppress his feelings for the benefit of the adults around him. This is a horrible rule to teach a child. It’s like saying “stop crying or I’ll give you something to really cry about.” You may not be threatening physical abuse, but the message is the same: adults would rather see you suffer silently than share the burden of your pain.

Obviously, the only long-term solution is to build his communication skills so that eventually he can express his pain in words. I also know that Charles won’t tolerate ABA for language lessons either. He’s far too intelligent for the way they speak to him, and he quickly comes to hate anything he is forced to do over and over. So communication practice has to be slowly integrated into his life when he is calm and happy, in a good state of mind for learning. It will take time.

Even once he learns, he might not always be able to use words when he is too stressed or overstimulated. Haven’t you ever been so upset or angry or shocked or offended that you didn’t have the words to express it and all you could do was yell or curse or cry? I know I have. It might also be possible to show Charles some other ways to deal with anger– punching pillows, throwing water balloons, kicking tires. What do you do when you are unbearably frustrated?

Charles and I were walking along the beach recently. He kept scratching me and pulling my hair. Here is how I respond to this behavior:

1) I step back and ask him, gently, to please stop scratching me.
2) I tell him I understand he is unhappy but I don’t know why. I tell him I’m sorry that he’s unhappy and that I want to help if I can.
3) I offer him my hands, and ask (several times, with pauses between questions) “Can you show me what you need? Can you show me what’s wrong? Are you feeling pain somewhere? Show me where. Do you need the bathroom? Do you need to rest?”
4) I try to move us away from any stimuli that might be distressing him– crowds, loud noises, cold wind. I offer to sit quietly with him or to give him some space. Sometimes he takes me up on one of those offers and seems calmer after.

None of those options helped. So I did something that is not really allowed by my job, but is required by human decency, at least when you’ve known a kid as long as I have known Charles: I gave him a big hug. Opened up my arms and allowed him to choose if he wanted a hug. He did. He leaned his head against my shoulder and took big shaky breaths. I stroked his hair. I told him he was a great kid and that I was glad to be his friend. I told him that life can be really hard sometimes. I told him he is brave and strong, and not to give up, and that he’ll learn how to tell us more things someday.

I comforted him as I would comfort any other human being I cared about. I showed him that I wasn’t angry at him, that I wouldn’t stop liking him even if he hurts me. I reminded him that his family love him just the way he is. I reassured him as I would reassure any child who is suffering.

(If I didn’t know him well, I might have put a hand on his arm, or offered to hold his hand. Many autistic people can’t stand being touched, especially when upset, but touch is also one of the most profoundly soothing ways people can interact. Being touched without warning and initiating touch yourself are also very different experiences. I never insist on touch, but I offer it frequently, and most of my clients love it. I also pay close attention to learn what kind of touch they prefer– a firm hand-squeeze or a gentle rub on the back, a high five or a foot massage.)

Charles had been lashing out at me every few minutes.

After the hug, he scratched me only twice in the next half hour.

He needed comfort. He needed compassion. He needed care. He needed these things above all else. They are basic human needs and basic human rights.

Autistic people must have their feelings honored, their humanity respected. They have the same emotional needs as anyone else, and it is up to caregivers to discover those needs, understand them, and meet them. Any other approach is unforgivable.

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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.”

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.

Notes About Learning Language

May 14, 2016 2 comments

I just got finished reading this excellent article: http://www.assistiveware.com/are-our-assumptions-about-autism-and-aac-all-wrong

Fortunately, I’ve only once seen a case where an autistic client’s AAC was used in the horribly restrictive way that this article warns against. I have also been privileged to witness some wonderful AAC uses, and I’m in the process of learning how to encourage even more.

But let me back up a little here and tell a story.

….

The family cat enters the living room and my client perks up and points.

“At!” He says excitedly, “At!”

“Yes,” I say with an encouraging smile, “That’s a cat.”

“At,” he repeats.

“Cat,” I agree. A few minutes later, just in case I had forgotten, he points at the kitty again.

“At! AT! AT!” He looks extremely proud of himself, as though he has just discovered (or possibly invented) the entire idea of cats.

“You’re so smart. It IS a cat.”

“Yow,” he adds, grinning from ear to ear.

“Yes! Cats say meow!”

“Yow. Ow. At.”

“I see that.”

“At”

“Yes, cat.”

….

This client wasn’t one of my Respite kids. He was a typically developing toddler. And I suspect anyone who has ever had a toddler has had many conversations of this type. This is by way of reminding you what “normal” language development looks like. Lots of labeling. Lots of repetition. Lots of speech that, while not meaningless, seems rather purposeless.

So why on Earth, when an autistic child does this on their AAC, do people call it “stimming” and take the device away? Or worry that it is inappropriate, problematic,  or inhibiting learning? And even if they don’t object, they certainly don’t engage and respond, much less encourage. And I think they should.

….

A client with some fine motor difficulties forms odd sentences on a device, inserting the word “iPad” at intervals, so it might read something like “iPad I want iPad park iPad swings.” Watching this, I develop a theory. I think the “iPad” button is being used as a home base, a starting point, a reference. “I know how to get to the ‘park’ button from ‘iPad,’ so I’ll make sure I start at ‘iPad’ first.” This 7-year-old had invented a strategy to help overcome difficulties with motor planning… a strategy that could easily be overlooked or considered a “mistake.” Kids are often much smarter than we give them credit for.

….

A pre-teen client relaxes on the couch, casually exploring her AAC program. She has a lot of pre-programmed phrases. “Hi, how are you?” “I’m fine.” “My name is Suzanne.” “Call me Suze.”

“Hi Suze!” I say. I want to acknowledge her words, even though I don’t think they are actually directed at me.

“How are you?” The device asks, and she answers it herself, verbally. “I’m good!” It looks almost like she’s having a conversation with the device… Talking to herself, as it were. Maybe she’s got an imaginary friend. Or maybe she’s practicing. I used to practice saying things in the mirror all the time. This kind of “non-meaningful” device use has never interfered with her ability to also use the device “properly” for communication. And she’s enjoying it. People learn better when they’re having fun.

“My name is Suzanne.” says the device. “Call me Suze.”

“Ok, Suze.”

I’m making toast for an 8-year-old client while his family relaxes in the next room. This kid is very smart, but doesn’t use AAC as much as we’d like. I suspect it feels very limiting to him, as he’s a very precise person. But he finds ways to work around the problems. Sometimes they are downright ingenious.

“I want to eat toast toast toast.” says the device.

His Daddy smiles and sighs, “Don’t worry, buddy, you’ll get your toast. She’s making it for you.” Daddy thought he was just asking for toast. Again. Three minutes after the last time he asked. Daddy thought he was pestering.

“Yup! Toast coming right up!” I enthused. I thought he was just excited. I figured this was his way of saying “Yay! Toast!”

His 10-year-old brother, however, understood something that neither of us adults (both of whom are pretty close to him) even considered.

“He’s telling you he wants three pieces of toast.”

Oh. Toast toast toast. Three toasts. Of course. I’m so glad there wasn’t a therapist there to “correct” him. The repetition had a specific meaning. I wonder how often we miss the messages intended by the WAY in which our clients use AAC, messages we probably dismiss as quirks, oddities, or mistakes.

….

A year later. The same client has a newer AAC program, one with more flexible grammar and a much larger vocabulary. But he still doesn’t use it for much besides simple “I want” statements. And I don’t know how to encourage it, but here are a few things I’m trying:

  • Using the device myself, in his presence. It’s hard, and time consuming, trying to express thoughts this way. Several times I’ve told myself I’ll only use the device and not speak for a given length of time… and invariably, I’ve failed and resorted to speech. That tells me a lot about why exploring the device during downtime is so important. You need to learn your way around so that when you actually want to say something to someone, it doesn’t take you ten minutes to locate all the words you need. I’ve said serious things and silly things and simple things. “I like music.” “I know this is hard work.” “You rock!” I’ve used it to ask him questions. He doesn’t answer often.
  • Inputting the beginning of a sentence, such as “I like…” or “I feel…” and handing him the device so he can finish the statement. He’s done so once or twice. Not usually, though.
  • Carrying the device around, and handing it to him when he seems to be trying to express something. What active 10-year-old is going to walk around holding something that size? Or any size? Something that fits into a pocket might work. Or having the device always set up in a specific spot so he can run over to it whenever he needs to. That can work at home and school and maybe the playground, but I realize that it’s a serious logistical issue. If you had to put in the effort of finding something or going to another room every single time you wanted to say something, how often do you think you’d bother for minor things?

….

He and I relax at the laundromat while his Mom goes to pick up his brother from practice. We both enjoy watching the laundry go around, hearing the regular swooshing of the machines. I find “washing machine” on his device.

“Washing machine. Washing machine.” Verbally, I add “I like watching the–” and complete my sentence on the device. “Washing machine.”

He looks up from the machine he is currently watching. I hand him the device, show him how to navigate to the “washing machine” button, under Appliances.

“Washing machine.” He says, then puts the device down.

“Washing machiiiine” I repeat verbally, drawing the word out, exaggerating. I giggle and he smiles. I pick up the device and find “dryer” next to “washing machine,” with an identical picture.

“Dryer dryer dryer.” I write. He looks at me, smiles. My own voice echoes the device. “Dryer.” I point at the dryers in the laundromat, even though I’m quite certain he already knows which is which. I hand him the device. I point to the button that says “dryer” and repeat the word verbally again.

“Washing machine dryer washing machine dryer dryer dryer” he writes.

“Cool,” I say verbally, “I like watching the washing machine too. And the dryer. But especially the washing machine.”

Doesn’t this conversation sound… familiar?

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/

 

Some Days in My Life

December 29, 2015 Leave a comment

Good news and bad. Successes and frustrations. We take steps forward and steps back. Sometimes we fly. Sometimes we fall.

I accompanied a client to the Get Air trampoline park a few times recently. They offer support people free admission with their clients. And one time, when my the client declined to go on after we had paid and entered, the staff gave us a voucher to come back and try another time. Which we did. And had fun. (In the meantime, my wrists got sore pushing him on the swing for a whole hour. It was worth it to see the smile that lights up his face when he feels comfortable.)

Unfortunately, Sea World here in San Diego has stopped issuing the disability passes that allow the escort/assistance person free entry. Which is a real pity. Fortunately, another one of my client families still has the old pass.

So that client and I went to Sea World, and more and more often I find myself thinking of him as my friend, rather than my client. A friend is someone you enjoy hanging out with, right? Someone whose intentions you trust (over-all, if not at every given moment). Someone you want to make happy, and who does nice things for you as well. So yes, by these criteria, this nonspeaking grade-school boy is my friend, even though our relationship is not one of equals, both because I am an adult and because I am his professional caregiver.

We’ve gone to Sea World before, with his family, but this time it was just the two of us. This was a very different experience. With just us, there is less talking, more flapping and bouncing. Less scheduling and more wandering. Less of me holding his hand (he’s older, now, too, and much more aware of his surroundings than he was even six months prior). More of me letting him lead (he knows the place much better than I do, after all). We got lost a few times (or maybe we went around the long and repetitive way on purpose. What do I know?), but we eventually ended up wherever he wanted to be. At least I think so. Sometimes I’d bring him over to a map and ask him to point to what he wanted. Sometimes this worked. Sometimes not. He was patient with the fact that I’m terrified of the Sky Ride. I know it’s one of his favorites, so we went on it anyway. But only once.

There were a few rough moments, including a minor meltdown/explosion on his part, for perfectly valid reasons. No one got hurt, and the only damage was to some food items. Then he opted to go into a quiet exhibit and watch the fish until he felt all better. I didn’t talk to him any more than necessary or make any demands on him while he was recovering. There were some awesome fish at the exhibit. Also turtles of various sizes. We were each excited about different fish, but shared a fascination with the electric eel. It was very big and ripply.

Throughout the day, we got some confused or surprised looks, but no disapproving ones, at least not that I saw. Both the staff and our fellow visitors seemed unsurprised by his buzzing hands, assorted vocalizations, and sudden detours. Sometimes we even got smiles. I guess increased autism awareness isn’t always a bad thing, at least not anymore. When he was jumping up and down blocking an exhibit and I said to the woman waiting to see, “Please excuse us, he needs a few minutes to calm down,” she simply said there was no need to hurry. It’s hard to imagine getting that response a number of years ago. I’m sure some places and/or people would still give us a hard time. But not that day.

There are the little moments of coded recognition, too. No one there ever used the words “autism,” or “nonverbal,” or “disability.” But there was the exhibit guide who mentioned that she enjoyed seeing such a wide variety of people every day. I have no idea if she was referring to my client in particular, but I wouldn’t be surprised. I was certain when the woman behind us in line for a ride, with an obviously highly distractable younger child, said sympathetically, “Waiting is hard, isn’t it?” that she had recognized something familiar. “Especially for this one,” I nodded, giving his shoulder a reassuring squeeze. “This one, too,” she said, smiling at the child by her side. And I knew that we were each accompanying a child who had a diagnosis that made them something of a square peg in a world full of round holes. We had adjacent cars for the ride, and both kids grinned ear-to-ear and shrieked with delight as we spun through the air. My legs were a bit wobbly as we dismounted, but we didn’t even have the chance to say goodbye– we were already racing off to the next adventure, and I suspect they were, too.

We both had to make some compromises. I vetoed the cotton candy, and he would have liked to stay longer and go on more rides. For my part, I would have liked to watch some of the animals for longer, and avoid some of the more crowded spots (not to mention the Sky Ride). But all the same, I can’t think of anyone else I would have rather gone with. I was strongly reminded of a blog post in which an autistic mother talks about her surprise when she realizes that not everyone envies her for her autistic children and the fun they have together. I almost felt sorry for the other visitors, who were obviously missing out on the great experience I had.

On our next outing, we’ll be going to the San Diego Zoo. I’m looking forward to it. And I just can’t understand why more people don’t enjoy the company of autistics.