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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.”

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We Are Not Amused: Problems with the First Person Plural 

September 19, 2016 Leave a comment

Today I’m writing more about language. ‚ÄčI’ve been thinking about adults who say “we” when talking to or about clients or children with disabilities, as well as children in general. 

I want to acknowledge that different people have very different levels of education, English language fluency, and ability to monitor their own speech. I sometimes get frustrated with activists who seem convinced that you can’t fight for social justice without using exactly the right language– language that is unfamiliar to most people.

I am a very language-oriented person, and it is difficult for me to write simply (for example, the first sentence of this post was originally “Continuing with my prior theme of dissecting language…”). I’m trying to become more accessible, since my natural writing style is hard for many people to read and understand.

Back to the topic.

There is a tendency for adults working with the disabled to use unnecessary plurals: that is, to say “we” when talking about something the other person is doing. I’ve seen some understandably hostile reactions to this in the advocacy community. But I also realized that I do it sometimes. So I started trying to figure out when and why. 

People usually say “we” to small children, disabled or not. Sometimes it really is a plural, and sometimes not. I think it’s hard to see the difference with babies, because the adults do almost everything for them or with them. “We’re going you upstairs to change your diaper” definitely involves both parties. And sometimes the adult is really just talking to themselves. “Are we having a cranky day?” isn’t a question most babies will answer.  

Other times, it’s like the parent is talking for the baby. “We need a nap” really means “The baby needs a nap” (although I bet Mom would like one, too!). I think this way of speaking makes people angry when a non-disabled person is speaking for a disabled person. Autistic rights activists get particularly upset about phrases like “We’re having a bad day,” when the speaker really means that a child (or even worse, a disabled adult) is having a bad day. Of course, it’s often true that if a person is having a rough day, their caregiver is struggling as well. 

I’ve used “We’re having a bad day” when talking about my disabled clients, especially if they are present, and I thought about why. One reason is because saying “He/She is having a bad day” sounds a little bit to me like I am blaming that person, when the truth is that I’ve probably made some mistakes that contributed to their bad day. It also sounds like I am totally uninvolved, and that feels impolite too. “We” feels more inclusive. Talking about someone in front of them is different than talking about you and that person. It’s usually rude to say “S/He’s going to the beach” in front of that person, but it’s perfectly fine to tell someone “We are going to the beach.” Really, though, it would be best to say something like “Today has been hard on everyone,” or “I think she’s had a lot of frustration today,” or “He seems upset.” I can’t know exactly what they are thinking or feeling; I can only guess.

Sometimes”we” really means “we.” “We are going to pick up your toys,” can mean “You and I will pick up the toys together,” and that’s just fine. 

What really bugs me is when someone, usually a professional, says “We’re going to pick up our toys now,” or “We need to put away our shoes,” or “We need to finish our lunch,” or “We need to earn three more tokens,” when they really mean “you” in all those cases.  We don’t talk that way with typically developing children, even when we are talking about doing something together. We say “I’ll help you pick up your toys,” or “You need to eat your lunch,” or maybe “Let’s put away your shoes.”

Using “we” and “our” when you mean “you” and “your” is infantilizing. I remember, as a fourth grader, our entire class being horribly offended when a substitute teacher (who usually taught kindergarten) said “Let’s all follow Mrs. Spitzer to the cafeteria now!” She was guilty of referring to herself in the third person (of course, I have changed the name) as well as addressing us in the first person plural. 

Now, sometimes people do use “we” in instructions. If you watch cooking shows, you’ll hear things like “Now we’re going to put our cake in the oven” or “We need to cut all these vegetables up really small, because we want them to cook quickly.” And usually the speaker is giving a demonstration at the same time. This can work in a classroom or therapy session, as in “We can use a graph to show this trend” or “We can mix red and blue paint to make purple.” At least, it works as long as the teacher isn’t using that awful sing-songy baby voice…

The other way that it’s sometimes OK to use “we” is to make a general statement. When adults tell children, “We cover our mouths when we sneeze” or, “We need to share with our friends,” they mean “I do this and so should you” or “This is what people are supposed to do.” Making a general statement can take the sting out of being corrected. I have a client with Down Syndrome who reacts badly when confronted directly but is happy to modify her behavior when I phrase it as a general rule, such as “Young ladies say excuse me when they burp” or “Remember, we always say thank you for gifts.” But this method, too, needs to be done respectfully. 

As usual, my underlying message is about the need for respect. A good general rule is: If you wouldn’t say it to a non-disabled person, don’t say it to a disabled person. But that’s easier said than done. It’s hard, too, to speak in an age-appropriate way with someone who doesn’t understand the things a typically developing person their age understands. Remember that what goes around comes around: you can’t teach someone to be respectful unless you are respectful to them.