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.”

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People Are Complicated

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.

We Need to Talk About Appropriate Language

This paragraph was originally at the end of the post, but I think I should start with it instead. The purpose of this essay isn’t to “dump on” ABA people, teachers, or anyone else who has a disabled child in their lives. I’ve made dozens of mistakes I know about, and even more that I don’t, and I suspect I will continue to make mistakes. That’s why I want to remind you all to think critically about what you do and say and how you do and say it. Think about the words you use and the messages you give without words. Try to imagine the perspective of your students or clients or children, and if you can’t imagine it, read more stuff written by adults with disabilities.

***

It was a minor thing that got me thinking about language. I was watching a middle-school level nutrition lesson for a profoundly autistic boy, and overall it was a good lesson. But it contained the following line: “I am lactose intolerant, so I should stay away from dairy.” Although I  understand figures of speech very easily, I also often notice when the logical meaning of words is not the same as the intended meaning. So I thought, “No, he doesn’t need to ‘stay away from’ dairy, he needs to not eat it.”  There’s a difference. This isn’t a food he has a contact allergy to; it’s just something that will upset his digestion.

I’m sure this strikes most people as a ridiculously small thing to fuss over. But so often, even non-autistic children misunderstand what adults tell them. Most of us can remember being unreasonably afraid of something– or hoping for something impossible — because an adult said something we misinterpreted, took too literally, or didn’t realize was a joke. Sometimes we hold these misconceptions for years. For an autistic child, who tends to take language very literally, this probably happens far more often. Even the phrase I just used — to “take language” a certain way — can be confusing, as it uses the verb “take” in a sense that only exists in idioms (I am indebted to Judy Endow’s book “Make Lemonade” for this particular example, although in her case she was confused by the phrase “take care”). Often, the context corrects the confusion, and academic misunderstandings are rarely critical. But when a child is learning about their own healthcare, the language must be as accurate and precise as possible.

***

I’m also not sure how I feel about lessons given in the first person. When a client or student reads a social story designed to give instructions, it makes sense to think this way, as in: “I will put on my shoes before going outside,” or “When I have a question for the teacher, I raise my hand and wait until the teacher says my name.” Non-autistic people also use these kind of internal instructions. Examples include internal “pep talks,” meditation mantras, and self-reminders during a busy day (e.g. reciting “I have to go to the bank and then buy cat food”).

But it often feels weird to me when teachers or therapists write and read these sorts of instructions. Perhaps some of my objection comes from the fact that these writings often make statements about the client/student’s feelings or thoughts in a way that an outside observer cannot possibly know. Or they try to tell the student/client how to feel.

I ran into trouble with this recently. A preteen client was having difficulty waiting in line for the slide at the playground. If other children were ahead of him, he would often shove them roughly aside, and then had to be removed from the situation. Having witnessed this several times, I developed some thoughts about why this particular circumstance was so hard for him.

First, the playground we always went to was usually quiet, so there was rarely a need to wait for the slide. He didn’t expect the waiting, so he didn’t handle it well. The other problem was a conflict with another social rule he knew: saying “excuse me” when he needed to walk past someone.  This skill had been very heavily reinforced at home, where he otherwise tended to crash into people while running around the house. Generally, when he said “excuse me,” someone would step aside and let him pass. At the slide, however, he would say “excuse me” to the child in front of him, but they would not let him pass, and he would become upset. I suspect that he was angry: as far as he was concerned, he was doing the right thing, and it was the other kids who weren’t following the rules.

I brought these points up to his ABA team and suggested that he needed a social script about waiting for the slide (and then had to explain that a “social script” wasn’t necessarily a verbal script but could also mean an internal set of rules for handling a situation). I was happy to see, next time I arrived, that they had put together a little social story for him. I half-listened to them read it to him before one playground trip, and planned to read it to him myself next time. When I did, however, I discovered a few problems. The script went something like this:

“My name is Joshua. I love to go to the playground and go down the slide. The slide is my favorite thing at the playground. Sometimes I have to wait for my turn at the slide. Sometimes there are other kids waiting ahead of me, and they won’t let me pass them. That is ok. It’s important to wait for my turn even if I am excited. I will wait for my turn nicely. Here are some things I can do while I wait:

I can have quiet hands

I can count to 100

I can leave the line and come back later

When I wait nicely, my mommy and daddy will be so happy. I like making mommy and daddy happy. The other kids will be happy, and I will be happy, too! I am a big boy who knows how to wait for the slide!”

Yeesh. “Quiet hands” is the first problem, but I won’t dwell on it, as others have critiqued it far better than I can (and at least in this family I’ve only ever heard it as a response to hitting or pushing people). The counting idea is an excellent one. But when I got to the last paragraph, I couldn’t bring myself to read past the first sentence. What is this, “Brave New World”? It’s one thing to point out that waiting nicely pleases people; it’s another thing entirely to tell someone how they feel about this. And “I’m a big boy” — Seriously?? He may have a moderate-to-severe cognitive disability, but he’s still almost 13, not almost 3. This kind of language is downright insulting.

When his BI (ABA person) first read it to him, I didn’t pay much attention to the words, but was bothered by the sing-songy overly cheerful voice she used– again, appropriate only for an infant or very young child. I should mention that, on the whole, I love his ABA team. They are flexible, patient, focused largely on practical skills, and generally sensible. He adores them, adores his sessions, and is learning skills that make his life easier and more independent. They are also very fond of the term “age appropriate.” They want him to have “age appropriate” self-care skills, do “age appropriate” chores around the home, and be able to participate in “age appropriate” social activities (he is a very social person, and loves to be included in games and outings, so I’m not against this goal, although I do point out that he also has the right to play in a more “babyish” way when he wants to). They even talk about getting the rest of the family to treat him more like someone his age!

So, with all this focus on age appropriate everything, how about using age appropriate language and tone of voice with him? I use simple sentences and a limited vocabulary, and sometimes I use funny voices for his amusement, but I sure hope I never talk to him like he’s in preschool. So I go off-script and finish his social story with “When you wait nicely, we’ll all be proud of you, and you can be proud of yourself.” And I say it just like I’m talking to any other person.

I have no way of knowing whether this particular client is sensitive to these nuances of language and tone. For all I know, he may be perfectly ok with it. But I’ve heard from enough adults with developmental and intellectual disabilities to know that some disabled kids will definitely notice being talked down to. And that means it’s not ok to do it to anyone.

I Know It Was Meant Well….

I’d like to start off by saying I’m sorry for calling out a total stranger in this post.

I know there are parents out there who will wonder why I’m picking on a mother whose intentions were obviously good. And there are autistic people who will think I should be much harsher in my judgement, who will want to remind me that good intentions are not enough to excuse hurtful words.

But this isn’t about a person. It’s about an action. You could even call it a behavior. This mother did something hurtful without being aware of it, and I had to bring it up, to caution others against the same mistake.

…

It’s a chilly day, but my client’s grandfather takes us to the beach anyway. She loves swimming, but also enjoys just playing in the sand. This is one of my “severely autistic” clients– 9 years old and completely nonverbal– no speech, no sign, very occasional use of a handful of words via iPad. She’s clever, though. But then, I think all my kids are brilliant 🙂

We put out a picnic blanket, and we play. We make a big pile of sand and take it down again. She rocks and flaps and squeals with delight. Because she’s generally very sensitive to touch, it’s never occurred to me to offer her any physical contact besides the basics– holding her hand, helping her dress, that kind of thing. But her grandpa comes over to tickle her, and to my amazement, she loves it. So I tickle her too, and the three of us laugh.

It’s a late autumn day in San Diego, and there are plenty of people in the water despite the cold: surfers and boogie boarders in wetsuits, a handful of children playing in the shallows. A boy about the same age as my client has finished swimming and sits a few yards from us with his mother, wrapped in a towel.

His mother comes over, and I’m a little surprised when she speaks to me.

“Hi! I’ve been watching you playing with your daughter, and I just wanted to tell you that you’re doing a wonderful job,” she says, “My son is like her, and I know that it can be so hard. But you’re doing great.”

I know. She meant it as a compliment, and as a moment of parental solidarity. She was thinking that I probably get a lot of weird looks or glares or criticism from other parents, and she wanted to offer me something different. And I appreciate that.

But there’s one problem, and you may have missed it.

She said that it was “so hard,” obviously referring to raising an autistic child. That’s unfortunate, but understandable. Raising any child is hard, and raising one with disabilities is often harder. Or maybe she didn’t even think it was that hard, but assumed I did.

That wasn’t the problem.

The problem was that she said it right in front of the child she was referring to.

In front of a child who cannot speak in her own defense, cannot ask for reassurance that she’s loved, cannot ask “what did that woman mean when she said…?” A child who has probably overheard a million times that she is difficult, or a problem, or heartbreaking, or any number of other variations on the same theme.

And that is unacceptable.

I know it wasn’t meant that way, that the mother had no intention of hurting the girl’s feelings. She probably didn’t realize even it could hurt the girl’s feelings, and that speaks to an even bigger problem.

She just assumed that the child in front of us couldn’t understand, or wasn’t paying attention. Maybe the girl was looking into the distance and humming, which typical kids do when they are not paying attention. But most likely, it was just the fact that the girl was obviously autistic. That alone was enough to make this mother fail to notice that she was saying something hurtful in front of the person she was talking about.

This tendency to talk about children in front of them isn’t limited to autistic kids, I know. Plenty of adults talk about neurotypical kids, too, and say unkind things in their hearing. That isn’t right either. But disabled children are so much more vulnerable, so much more likely to overhear that they are a burden, a tragedy, a hopeless case. That parenting them is so hard. And they take it to heart.

I suspect most of us remember how awful it felt to disappoint our parents, or make them sad, or believe that we made life harder for them. Do you also remember how easy it was to get that impression from a single sigh of frustration, a shaken head, a few snappish words? How long did you worry and fret over a single criticism or an argument you overheard your parents having? What if people often said you were so hard to raise?

How often does my client hear that? How much does she understand? I have no idea. But I’m pretty sure it’s more than most people think. And because she has no way to tell me, I must assume she is understanding, paying attention to, and worrying about everything.

I wasn’t about to get into all this while babysitting, especially since that conversation might also hurt my client. So I did what I always do at times like this. I did my best to counteract any possible negative effects. I gave my client a huge hug and a big smile.

“Actually,” I told her, “I’m not her Mom, I’m her aide. And she is the best kid ever! I adore getting to spend time with her. My clients are all wonderful kids and I’m very lucky to have them in my life.” There was a brief pause, as (I suspect) each of us considered our own surprise at the other’s words.

We exchanged another pleasantry or two about how much the kids love the beach, how soothing the water is for them, then said goodbye. But the experience left me feeling shaken. Shaken by how easy it is to overlook something like this, how often our words have impacts we never consider.

So please, pay close attention to your words. Assume your children, your clients, your students are always listening. Assume they understand everything you say. Think about how you, as a child, would feel if someone spoke those words in front of you. Around nonverbal kids in particular, be vigilant. Someone’s self-image may depend on it.

Notes About Learning Language

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/