You're Breaking Up

A few days ago during one of Ben's not-so-good days, I became quite frustrated with him. I lectured him for several minutes and then, noticing that he wasn't hearing a word I said, I asked, "Ben! Do you understand what I'm saying to you?" He looked up at me and replied, "Actually, no. You're breaking up. Sorry."

I laughed at first, but then realized that he might have been accurately describing his experience. James Ball, author of "Early Intervention & Autism," stresses that autistic children struggle to process verbal information--particularly in chaotic situations. I'd say that between my raised voice, the blaring television in the next room, and his siblings' nearby hooting (apparently I've given birth to a parliament of owls), Ben wasn't able to process much at all of my tirade. It may truly have sounded to him like I was breaking up, as the synapses in his brain fired on and off in an effort to process all the sounds around him.

Ball's comments also help explain Ben's urgent need to find signs and symbols that represent verbal words. For example, last summer Ben and I were attending one of Joey's (my 9-year-old) baseball games. I was so pleased to look over at one point and discover that Ben was standing among a few other children who were about his age, rather than wandering around by himself. Suddenly, though, he reappeared back at my side and said, "Mom, how do I say 'I don't know' in sign language?" I told him that I wasn't sure. He responded, "Oh. Maybe it's like this," and then he made a series of enigmatic hand motions, pointing to his head, then waving his fingers away from his body. Satisfied that he had figured it out, he ran off again toward his new friends and immediately repeated his signals as if everyone might take his meaning. He didn't seem to notice the blank look on the children's faces as they watched him and then turned back to their own games.

One evening several months ago, I instructed Ben to go upstairs and get his pajamas on. He turned to me, blew directly into my face, and then explained, "If I blow on you, it means yes." And then he trotted upstairs to change his clothes. For several days after that, he regularly blew in my and others' faces as a way to express his opinion--sometimes positively, and sometimes not.

It's hard to have a conversation with Ben, partly because he loses interest a few sentences into the effort, but also because if Ben's train of thought gets derailed midway through a sentence, he can't just pick up where he left off. He has to go back to the beginning of the sentence and start over again. Often Ben will begin a sentence four or five times before he can get all the way through it--and he and his listeners get frustrated after too much of that. Tonight, Ben was trying to tell me about something he learned in school. He started talking, but then stopped and said, "Wait. That was a mess up." He tried again, but again stopped mid-sentence and said, "No wait, that was another mess up." And then he started a third time, only to stop yet again to announce that he had made another "mess up." Finally, on the fourth try, he was able to verbally express his thought.

I know the frustration of talking to someone on a cell phone that cuts in and out. I wonder what it might feel like to have regular, face-to-face conversations cut in and out in the same way. Probably I'd do just what Ben does--I'd find new ways to communicate, preferably without using words, or I'd simply stop trying to listen. Because really, there's not much more frustrating than having to tell someone, "I can't hear you--you're breaking up!"

What's a Picture Worth?

Ben was the easiest baby born to human parents. He was docile, quiet (too quiet, really), and content to sit in one spot for hours, staring blankly at whatever parade of activity passed in front of him. He didn't roll over, as most infants eventually do, until he was six months old. He didn't crawl until he was almost one; he didn't walk for another five months after that. Did I worry? No. He was just moving at his own pace, I figured. He was meeting the developmental milestones--just not as quickly as other kids do. But he was my fourth child. He got lots of parental and sibling attention. I supposed that he just didn't see much need to change things up too quickly.

But once he got up and walked, my docile, quiet baby vanished and every waking, toddling moment was soon laced with some form of chaos: he pulled cereal boxes from the pantry to scatter millions of little oat circles across the kitchen floor; he dumped cups full of water or other accessible liquids (notably, my Diet Coke) into lakes and oceans on the carpet; he removed his poopy diapers to create fresco artwork on the walls and floor; he emptied full bottles of shampoo or dish soap onto beds or down the bathtub drain. Did I worry? No. I figured he was just an active kid. Maybe he was making up for lost time.

He was four when I sent him to preschool. He couldn't sit still, couldn't interact with other children in appropriate ways, couldn't control himself from hitting, kicking, or spitting on others, and often ran out of the classroom either into the hallway or else out the door into the parking lot when he spotted an opportunity (little jail breaker!). Did I worry? No. I figured he had ADHD, and took him to the doctor for a prescription that actually helped a lot.

I didn't worry when he started kindergarten, either, and couldn't tolerate sharing a table with other children. He never played with other kids on the playground. He often still pinched, pushed, and hit his classmates, but I figured that his meds needed some adjusting.

And then came Picture Day, which happened first thing in the morning for the kindergarten class. By 9:00 a.m., his whole class had smiled and said "cheese" for the strange guy with the rubber chicken. By 9:30, the school principal called me to say that Ben's behavior had escalated to a point where they could no longer keep him in school. I picked him up, drove him home, and finally started to worry--particularly after I began to cry and Ben punched me and said, "You're a big crybaby. You're a stupid crybaby!"

We've come a long way since Picture Day last year. With a diagnosis and a treatment plan in place, Ben's making some slow but certain progress. So when yesterday--Picture Day--rolled around again, I thought for just a moment about sending a note to his teacher to warn her that Ben might have a tough day. And then I changed my mind. It seemed like he was having a good morning, so I decided not to worry about it after all. Still, I wasn't entirely surprised when the principal called me at lunch time to report that Ben was sitting there in his office with him, after spending lunch spitting on, kicking, and pushing other children.

I thought a lot last night about what Picture Day means to an autistic child, and realized that it must almost feel like a horrid personal violation to him. Ben doesn't make eye contact with anyone--not even me, and I'm his closest connection in the world. Imagine if every time you were asked to look someone in the eye, your brain began shooting off electrons in a frenzy that would rival the finale of a 4th of July fireworks show. I think that's what it's like for Ben when he's asked to make interpersonal connections. Yet on Picture Day, he's put on a stool--the center of attention--and commanded to look up, look here, smile, and say magical, grin-inducing words. His over-firing brain can't have much left by the time that ordeal is over. So of course, Picture Day is almost impossibly hard for him to survive without some level of emotional overload.

Is it worth it? Do I continue to force him through that level of over-stimulation every single year for the rest of his educational career? I love his school pictures, and I cherish the memories that each picture inspires. But what about him? I think I have to remember that on Picture Day, Ben will always need a chance to regain some kind of balance and quiet in his own mind once the photo has been taken.

The fact is, Ben needs me to worry a little more about Picture Day.

Doing This Stuff...

A couple nights ago, I sat down at the kitchen table next to Ben after having been gone all afternoon and evening with Izzy to her Nutcracker rehearsal in Salt Lake. Apparently, Ben and his brothers had been saving up questions with which to bombard me upon my return. Within moments of sitting down, the kids began competing for my attention, all talking at the same time, each word a little louder than the last, in an effort to be heard first. It was chaotic, and too much for Ben. So he communicated a different way: he pulled back his fist and punched me in the back as hard as he could. Chris (my dh) jumped up, picked up Ben, and hustled him upstairs to our bedroom, where he tucked him into our bed until Ben could calm down and fall asleep. I listened as Ben screamed and yelled, and when he finally quieted down, I went upstairs to talk to him.

I crawled up next to him on the bed and said, "Ben, it really hurt me when you hit me." He replied, "I don't care if it hurt you. Because you wouldn't listen to me." I explained that hitting is not the way to get attention, even if everyone else is talking and yelling. He responded "Oh," and then looked blankly toward the ceiling. That's usually my cue that he's done talking. But I wanted to finish our conversation with some praise so I added, "Ben, I'm really proud of you right now, because you are calm, and you are using your words, and being really good." He looked at me and said in a very matter-of-fact tone, "Well, I don't want to be good. I'm only doing this stuff so I don't be in trouble."

I give him double-points for being honest. But I wonder: is Ben's behavior, good and bad, always so utilitarian in nature? He had a terrific week at school last week; he earned every sticker he could on his "good behavior" chart and only got "Good Day!" and smiley faces in the comments section of the chart. Truthfully, I feared for a couple days that Ben had actually stolen his teacher's stickers and given himself such high praise, but I don't think he has mastered a perfect forgery of her handwriting. Yet.

On the topic of school, Ben is struggling with spelling tests. Such a verbal skill: hear a word, process the sounds mentally, convert them to their letter-referents, and then transcribe them onto paper. The first week, I tried studying spelling words with Ben the same way I've always done it with all my other kids: I say the word; Ben repeats the letters--an entirely verbal activity. I thought it worked well, until he missed every word on the test. And then the little light-bulb clicked on over my head (well, first it swung down and cracked me across the skull with a little "Duh!" sound). Ben can't process verbal information very well. His strength is in tactile, hands-on skills. So the next week, I spent one night having him write the words down on paper. The next night, we sat on the couch with imaginary chalk boards in front of us. I said a word, and then Ben "wrote" the word, letter by letter, on his chalk board. It became quite an elaborate activity--at least in Ben's creative mind. He was pulling boards down, sliding them over, scratching erasers over them, trading boards with me if mine seemed bigger than his, and at the end of the activity he carefully folded up our imaginary boards and tucked them under the coffee table. The next day when I suggested we use our imaginary boards to practice again, he ran upstairs to the living room, made a series of banging and clacking sounds, and returned with the invisible boards tucked under his arm. He hung each (mine and his) on imaginary hooks over our heads, and we went through the spelling list again. That week, he only missed one word on his test. Sweetest are the small victories, I think.

But most importantly, I finally started to get it into my own head that Ben's world operates by "doing"--not "saying." He disassembles his toys, screw by screw, as his way of deriving joy from them. His favorite television show is "How It's Made"--a show on the Science Channel which details the mechanical process of creating various objects such as radios, gloves, hockey helmets, and compact discs. He can watch several episodes of that show in a single sitting and never get bored. By contrast, I am a student and teacher of English; I love and live in a world of words and language. I struggle to understand Ben's daily experiences as clusters of motion and action, rather than verbal expression. And yet, whether he's behaving or not, and whether he wants praise or just wants to avoid getting in trouble, Ben is "doing this stuff" because that's how his mind makes sense of his environment: Doing, doing, doing.