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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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Notes on my own experience of surviving depression

April 21, 2013 1 comment

The reality of depression is that it is a state in which your brain regularly lies to you. OK, let me qualify that, because the healthy human brain also regularly lies to us; it is, in fact, designed to do so, and the fact that it does so with such skill and efficiency may be one of the secrets to the success of the human race (google “optimism bias” if you’re interested in this).

The depressed brain lies to us in some very distinctive ways (leaving aside the hairy philosophical question of whether there is a “me” that my brain can lie “to”: short answer; there isn’t). It tells us that life isn’t worth living, that others hate us or look down on us, that we are worthless (or worse, burdens). It gives us certainty that we cannot succeed in our endeavors, that doing so would be pointless even if we could, and that there is no brighter tomorrow to which we can look forward, and it tells us these things with deep conviction.

These thoughts have no rational or logical basis, and as such, they are often relatively immune to logic. These are “gut” feelings, often of the same intensity as our other beliefs and our certainties about our own memories (which are, yet again, far from factually correct even in mentally healthy humans and possibly even more distorted in those experiencing clinical depression). These damaging thoughts repeat over and over, wearing deep grooves into our minds, getting us stuck in mental ruts so deep we cannot even see that we are in them. Attempts to argue our way out of them often turn into vicious cycles that spiral back down into the depths no matter which way we turn, and sometimes, the only way to get our negative thoughts off their track is to hit them broadside with the mental equivalent of a football tackle. I have been known to treat the words “my brain is lying to me” as very nearly a mantra on occasion. If I can focus on nothing beyond that one fact, I stand a chance against all the other terrible things I am so terribly sure of at that moment.

Many people who have read up on depression in order to better understand or help a suffering loved one have run across descriptions of this. But there’s something those articles often fail to mention, which is that talking yourself out of these self-destructive beliefs is a constant in the life of someone with depression. It’s not just once or twice or when we’re at our worst. It’s something we live with permanently.

Medication can help, and it can help a lot. Being in a better situation in our lives can help, but doesn’t always. Maintaining healthy habits of eating, sleeping, exercise, and self-care can help, but these are hard to maintain and even harder to start in the first place, and for those of us whose brains tend towards depression, a small slip in our daily routine can be the tiny chance our neurology was waiting for– we may teeter, overbalance, and plummet back to the depths. Most importantly, we can develop good mental habits. We can force our brains again and again into healthier patterns of thinking that make it easier to counter the negativity welling up within us. We can get better at recognizing the lies our brain tells us and refusing to believe them. We can build up reserves of good memories, good relationships, and other sources of strength to draw on in our darker hours.

But the struggle is always there. I am, currently, fairly stable on two medications, in a good place in my life (college degree– in psychology, no less!–, sufficient financial means, a solid romantic relationship), and a many-year veteran of mental illness with a good deal of practice managing my own disorderly mind. And yet, depression is never far away. It sneaks up on me in odd moments, at night in my dreams, in the mornings before I get up, when I make little mistakes, when I feel the least bit physically ill, when I skip a meal or don’t get enough sleep, when I worry, when I make the mistake of comparing myself to others, when I think about my future…

I have been depressed for many years. I have only very rarely been close to suicidal. The lies my brain tells me are not the enormous ones. I am grateful that I almost never consider life something that is not worth living. But I struggle. A little voice in my head says over and over, “why bother?” It says “You can’t succeed, so don’t even try.” It says “it’s not worth the effort.” Sometimes it’s not a voice and words, but an emotional weight that feels physical, that makes me hesitate for an instant before taking my next breath. That makes me turn off the alarm before I’m even awake because a little part of me is awake and doesn’t feel up to facing the day yet. That makes me want to lie down and rest, again and again, instead of doing something more productive.

I talk back to the lies. I convince myself to do things, to try, to socialize. I tell myself, “Do it! It will be fun!” and “You can make a difference,” and “It’s worth the effort to… eat, read, answer an email, call a friend, wash the dishes, get dressed on days when I don’t have to be anywhere, tell a joke, go for a walk, cook a meal instead of eating fast food, apply to that job, repaint the room…” any of the myriad projects, large and small, one-time or every-day, that so many people do without a second thought. I have to talk myself into them, again and again. I am my own coach, counselor, cheerleader, comforter, and conscience.

I can do it. And I do. But it’s a never-ending task, and an exhausting one. I have to answer the question “why should I bother?” sometimes multiple times per day. It is frustrating, sometimes infuriating. It takes my energy and it takes my time and it leaves less of those things for all the other activities listed above. Depression is a weight I carry with me nearly every day– not a huge one, not usually, but enough to cause a little extra drag, to slow me down, to cripple me just a bit (and as someone who works in the field of disabilities, I use the term “cripple” very deliberately here). Not even so much that most people would notice. Sometimes even I don’t notice, until those oh-so-rare moments when the weight lifts entirely, and for just a few days, or even hours, every action comes to me so easily that I cry at the difference between this feeling and my normal life.

***

This entry turned into something longer and more complex and far more unwieldy than I originally intended. I can only hope I have given some insight– both to others struggling with depression and to those lucky enough to be free of it– into the fact that surviving depression is a process rather than an endpoint. It is, I hasten to reassure anyone in doubt, completely and entirely worth it. My life may be an uphill struggle, but it is also rich with worthwhile goals, pride in my accomplishments of every size, great joys and tiny fleeting beauties. Every good story I read, every tasty meal I eat, every sunset I watch, every joke I laugh at, every moment spent with friends, every time I make someone else smile, every tiny thing I teach or even make someone else think about– these are the things I live for.

I have faith that these things will endure, and that I will encounter more of them in the days to come. And as an atheist and skeptic, I believe that I have only this one life, one single chance to experience what I can, to learn and grow and share and love and most of all to leave this complex, incredible, amazingly beautiful and baffling world, in some tiny way, a better place than I found it– and if there is such a thing as a sin, the only one I can imagine is to give up on that glorious opportunity. And so I will, in the words of Joseph Heller, “live forever or die in the attempt,” and no matter how difficult life is, I will cherish it, and never stop looking for ways to make it better.