Monday, August 29, 2011

No Shame in Asking

I’m not very good at asking for help. I don’t ask often, and almost never for help that I really, really, can’t do with out (I’d hate for someone to feel pressured). I find a way. I let my own work go undone or just do everything half-assed or late, or not at all.

Asking for help is a struggle. If there is any sort of negotiation, I back out if I can, and I sure won’t ask again. It’s not out of spite, at least it’s not always out of spite, it’s something else. Being down just reinforces my own warped belief that I should be able to manage alone. I’m learning that this is something I have to work on.

Last Sunday was our block party. My boys were thrilled. ALL the kids were out; and since our block is heavily populated by large Orthodox Jewish families and since multi-family dwellings outnumber single family homes two to one, ALL is a lot, like, dozens of kids. A fire truck comes and lets the kids climb into the cab, and an inflatable jumper sets up shop for an hour or two, people set up games and share treats. But the thing that the kids get the biggest kick out of is that they can ride their bikes in the street because traffic is blocked at both ends.

Coincidentally, the next block over was having their party too. Before our jumping jack arrived, they had a giant inflatable slide, a water slide, my oldest claimed, he wanted to go check it out, but I put him off. The party was about spending time with neighbors and he couldn’t do that on the next block.

We were discussing this as I was closely following my five year old who was peddling down the street. I paused to introduce myself to a woman who recently moved in up the way. I asked big brother to shadow little brother and to remind him when it was time to turn around— he was headed toward the busy cross street. Big brother argued for a moment, seeking clarification on how long he had to babysit, could he check out the slide after, could he have a soda? I shook my head and told him that I needed him to watch his brother a now and turned back to my new neighbor.

A moment later I heard a shout. I looked up and was running full sprint, dodging kids and bikes and anything that was unfortunate enough to stand between me and my nightmare. The Boy had cast his bike aside and was running toward the giant inflatable slide on the next block, undeterred by the flashes of cars on the cross street between the slide and himself. I shouted for him to stop, I ran, and simultaneously questioned whether we could catch him in time.

My older son got a hold of his brother's arm ten feet or so from the intersection. I was there a moment later, praising one child and reminding the other, in a falsely calm voice, that he may not run away and streets are not safe and cars can hurt him and he must come inside now because he MAY NOT RUN AWAY!

Though outwardly I did not loose my cool, inside I was sick and worse, confused that I had run past many adults who could have interceded, but didn’t step in to help. Now, they avoided looking my way as I half marched, half dragged my son up the block. I was angry. Why had no one tried to help? It had been clear that we were chasing a small boy as he ran toward the street, but it was as if we were alone despite the crowd. What kind of neighbors were these?

Inside, I tried to catch my breath and slow my heartbeat. My eyes burned as I told my husband what had happened. I was scared, angry and—as the story unfolded—ashamed. Ashamed because once I could think, I knew why no one had helped, why everyone had looked away.

 Because they didn’t know. Because I have never told them. Because I had never asked for help.

Sure, I’ve mentioned my son’s diagnosis. I’ve never hidden it. But generally I’ve assumed that either word got around or that my boy’s behavior would speak for its self. Most typical five year olds don’t sing “We are riding our bikes! We are riding our bikes! We are riding our bikes!” as they cruise down the sidewalk. Most don’t hang out windows pretending to be Astroboy, just before he learns he can fly. For that matter, typical five year olds can usually walk from car to house without being led by the hand. Heck, on our block, they’ve been playing outside unsupervised for at least a year.

But I presumed too much. Whatever people might have noticed, they have been careful not to jump to any conclusions. Whatever I’ve told them, they have kept to themselves, lashon harah, literally “bad speech,” including gossip, is avoided and condemned in the Orthodox community. If I want my neighbors to acknowledge that my son has autism, if  I want them to keep an eye out for him and intervene when necessary, I must be explicit, I must ask my neighbors to help me keep him safe.

There’s no shame in asking. The shame would be not asking for help. And if my life had not been touched by autism, I might never have known.

Monday, August 15, 2011

Empathy for Gru

We’ve known for a long time that progress for kids with autism is uneven. But sometimes if feels like all we are doing is going through the motions, with no progress. The motions themselves loose their meaning and become rote, we don’t even think, just do.

As we trudge along, stressed and tired, days, weeks, whole months feel like a long, dark tunnel. We don’t know how far we have to go, can’t see how far we've come, and we don’t truly know where we are headed. Suddenly we round a bend, and we see something that makes every step worthwhile. Maybe a skill is acquired, or maybe it's just a flash of what we hope is the future.

A couple of weeks ago, my husband left our boy’s room after putting him to bed. “We just had a conversation,” he told me, with a stunned but excited look. He told me about an unscripted exchange in which my son replied appropriately to a series of questions with novel language, meaning he wasn’t repeating something he’d heard (echolalia) or  reciting something he’d been taught to say. He was clearly expressing his own ideas with his own words. The ideas and words weren’t complex, or even on par with what a typical five-year old might say, but his expressive language exceeded anything we’ve ever heard from him before.

In the morning, and for the next few days, we tried (somewhat compulsively) to engage our now tight-lipped boy in another conversation. We never got as far as Barry did that night. That didn’t matter, we had seen a flash of that potential everyone perceives in him that never quite reaches the surface, and it was exciting. Reinvigorating. I wrote a letter about it to his brother, my oldest son who has been away at camp for weeks. He, maybe more than anyone else, is stung by his sibling’s inability to communicate. He’s often the target when his littlest brother is unregulated and is looking for someone on whom to take out his crazies. Big brother tolerates a lot, but also grieves the barriers in their relationship. He takes autism personally, and takes it hard.

As you might guess, our little guy really misses his object of affection and aggression. Several times a day he recites a line from the social story I made in preparation for his brother’s departure.  “I will miss him, but he will be home in a few weeks,” he repeats. This alone lets us know how keenly he feels his brother’s absence, though he’s never been able to express it with his own words. Then, the other night, he did something that nearly blew us over.

Our boy was watching Despicable Me on his iPad (again). In the story, a softy villain adopts three girls to help him execute his latest evil scheme. Of course he and his household of minions quickly become attached to the charming girls and they become almost a family. Seeing how affected the villain is by the kids , his assistant arranges the return of the girls to the orphanage. We know the story very well around here, not just because parts of the movie are played just about every day, but also because the boy will recite whole scenes verbatim.

But as he watched that night, he wasn’t reciting lines from the movie, though he can recite whole scenes verbatim, including the soundrack. As the scene when the girls are dragged away approached, we heard him reciting lines from the social story about his brother going to camp. “My brother is going away for a while, I will miss him,” then, suddenly, be began sobbing! Watching the little screen he exclaimed “He cannot look at the girls” and crying, completely overwhelmed by his, and the character’s, sadness. He was reading the characters expression as he walked away from the girls as pain, not the indifference Gru hoped to show. A very subtle reading of emotion, indeed.

Um, huh?  This display of understanding another's emotions (albeit a cartoon) was so far beyond our expectations for our autistic five year old child, so far beyond the kind of empathy that any autistic person is “supposed” to show. We just stood there gaping, unable to truly believe what we were witnessing. Not a sudden light, more like the rolling thunder of a train that approaches, passes, and is gone. His own strong feelings of missing his brother helped him perceive the emotion of another and empathize.

He wouldn’t talk about it later. He doesn’t have the words and he won’t let us put words in his mouth this time. It was a completely spontaneous event, but the culmination of so, so much work. I’m not surprised that this pivotal moment would hinge on my oldest son, whose place in our family, if we were a single organism, would be it’s heart. I’ve always noted that my two older boys are their brother’s best models. And, I think, hope, pray, they will always be best friends, and that they will always know what is in the others' hearts.

Tuesday, August 2, 2011

Jump in, the water's fine!

My youngest son, who is five and has autism, has a field trip scheduled. He is going to a water park tomorrow. Without me. Without Dad. With camp.

His camp is awesome. He is going to a regular summer camp through a special needs inclusion program. So far there’s been nary a hitch. He has not once, all summer, run into the street and gotten hit by a car, drowned in the pool or disappeared from the camp grounds. On top of Those Things not happening, he has established friendships with typical peers, participated in a ton of great activities, and finally puts his head underwater when swimming-—in fact, he now spends more time under water than on top of it when he’s in the pool. He’s a fairly proficient swimmer; he’ll love the water park.

And it's not even really a water park. It is a park district aquatics center. Two slides, a zero-depth pool, some play structures that dump water, the kind of place that I’ve taken the kids to lots of times without incident.

So why am I a nervous wreck?

It has been suggested that many parents of autistic kids suffer from PTSD (post-traumatic stress disorder, most familiar from the its effects on many former combat soldiers). Our lives do have more drama, and sometimes trauma, than most. My son learned to escape his exersaucer at 9 months, could open virtually every form of child lock by age 3, and has slipped out of the house more than once, forcing us to lock him in his bedroom at night and put extra locks and alarms on all the doors. Lately he’s been opening and climbing out of our living room window, dressed in his underpants and snow boots, pretending he’s Astro Boy, just before he learns he can fly. Eventually the high level of anxiety becomes habitual. We’re always on high alert, waiting for the next emergency.

You may have heard that a new diagnostic code was recently approved for wandering. “Wandering” sounds sort of harmless, you imagine a child walking away from mom and into a toy store at the mall or an old lady in a hospital gown picking flowers in somebody’s yard. But wandering is sort of misnomer.

Autistic people usually don’t just wander; they don’t just distractedly follow a butterfly and end up miles away. Autistic people decide to go somewhere, or do something, and don’t understand the dangers of pursuing that plan on their own. My son, tired of waiting for us to get ready for an outing last weekend, left the house and went to the car on his own. It was terrifying and he was only “missing” a minute or two. Luckily he wasn’t waiting for us within sight of water. The statistics on wandering and drowning are downright frightening. Although, even I have to admit most of those tragedies don’t involve lifeguards and the buddy system.

Truth be told, my son is probably going to be safer on his field trip than he is during certain times under my own supervision. I’ve got distractions: other kids, phone calls and chores and when I have couple seconds, I sometimes use the bathroom. His aid has only one job, keeping my son safe.

Of the many flavors of jive I work to push out, fear is one of the hardest. Anxiety is a strong emotion, sufficiently powerful to obscure the powerlessness I feel over all the “what ifs”. Parents of autistic kids don’t have a monopoly on clutching at worry or letting fear dictate their behavior, but when my little guy is out of my sight, I can’t trust in the rules I’ve taught him, his carefully cultivated good judgment, or even his fear of consequences. He has none of these. My fears are all I have to hold on to.

There are plenty of legitimate things to worry about, and in the end I will always err on the side of caution when it comes to this kid. As hard as it is for me, when it comes to a field trip to a water park, I just have trust in the team, and let him dive in. Even if I’m the one holding my breath.