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Steps Towards Communication

January 6, 2018 1 comment

A while ago, I wrote about the collaborative nature of communication and the wonderful progress one of my clients has made over the last year. I didn’t talk about the incremental steps that got him to that point. Sometimes the signs of progress are so small that they’re easy to miss. But every one deserves celebration. Here are some memorable moments along the way.

***

We’re sitting at the table while he eats lunch. I’m singing softly,  because he likes music and because I often sing when I have nothing else to do. He stands, walks over to me, places two fingers under my chin, and pushes up lightly on my jaw. The meaning is unmistakable: he’s telling me to shut my mouth. I do. Half a dozen reactions pop into my head– surprise at this action I’ve never seen before, hurt feelings that he doesn’t want my singing, being impressed at how clearly and cleverly he got his message across, mild shock because it’s normally considered rude for a child to tell an adult to be quiet, and a quiet pride that he is comfortable enough with me to make that request.

Above all, I am excited, elated, overjoyed. Because HE MADE THE EFFORT TO COMMUNICATE WITH ME. He could easily have left the room. He could have pinched me or pushed me away. He could have covered his ears, or made loud noises. I’ve seen him do all those things, especially leaving the room. But instead, he decided it was worth trying to communicate. After the hundreds, thousands, maybe millions of times that he has tried and failed to get someone to understand something, he still cared enough, hoped enough, trusted enough to try to bridge that gap of understanding once more. So I sit in awe, and appreciate that magical moment. I am honored.

***

It was just a month or two since he started using photos of objects and places to show his mother what he wanted. I arrived at the house one day to find her incredibly excited. “We ran out of pretzels and chips,” she tells me, “and he brought me the picture of Costco! He knows we buy them there! So I took him to Costco, and he smiled the whole time.” She’s always known he’s more observant than most people give him credit for. I think about this level of abstraction for someone who is still very new at using pictures to communicate. He didn’t bring her pictures of what he wanted, he brought her the picture of where they had to go to get what he wanted. He was thinking a step ahead, thinking about a process rather than just a goal, and making elegant use of the very limited tools he has. This is what intelligence looks like. This is what communication looks like. And she had the perfect response– she acted to let him know she understood. Being understood must be such a relief for him, such a thrilling experience. I hope that his joy on their shopping trip was not just happiness that he got what he wanted but also pride for his own effort and success at communicating.

***

We’re sitting in the back of the car together on the way back from a fun outing. As usual, he is verbally stimming, making excited whooping noises and repeating his favorite syllables. And then, among the wordless cries of enthusiasm, I hear something that sounds very much like “Oh yeah!” So I echo it back to him, with feeling: “Oh, yeah!” He turns, looks me straight in the eye, and grins. A feeling of amazement sweeps through me, and for a moment I wonder why. Then I understand: this is the first time I’ve ever felt that he is SMILING AT ME. I’ve known him for close to three years. I’ve seen him smile around me. I’ve occasionally seen him smile in response to things I’ve done or said. I’ve seen him look at me while he is smiling. But I’ve never seen a smile aimed at me, a smile meant specifically for me to see. A moment of deliberate connection. A smile used to communicate. It’s breathtaking.

And suddenly I’m overwhelmed by how precious, how perfect this young man is, and how under-appreciated by so many people who aren’t lucky enough to know him as well as I do. I weep with joy at who he is, and with fear of all the people and situations in the world that will try to change him just because he is different, because they don’t understand him. I want to protect him from that world. I wish he would never feel lesser than anyone else, never feel unaccepted, left out, or looked down on… And I know it’s an impossible wish. His family (and I) adore him unconditionally, and I can only hope that will be enough to keep his sense of self intact. I wish everyone, including him, could see him as I do: a shining, caring, brilliant, gentle, sensitive, playful, joyful boy, capable of so much more than he knows. It is a privilege to be a part of his life.

***

Tiny, precious moments. Such little, quick, ephemeral things, so easy to miss or overlook. And each important beyond measure, each genuinely worthy of celebration. These brief connections are enormous milestones, heroic accomplishments for him. Each demonstrating, beyond the shadow of a doubt, his unique identity and his desire to share the person he is with the people he loves. To communicate.

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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 lengthy 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 things 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 disapproval. 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.”

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/