He's Holding the Moon

Last week we traveled to California to spend the Thanksgiving holiday with family. As we loaded the car with luggage, snacks, and movies, I instructed all the children to take their backpacks to their rooms and fill them with activities for the road--books, crayons and paper, small toys, etc. We've been on two other road trips recently, so I felt confident that each child would be able to retrieve appropriate items. Soon the children reemerged with bulging backpacks. We tucked everyone into the car, and set off.

Ben (seven years old) immediately extracted his Nintendo DS from his backpack, and between that and the movies playing in the Suburban's tv/dvd machine, he was content for the first three hours of the drive. Then, as the dark of night crept over us, the car's interior was suddenly illuminated with a soft blue-white glow. My husband glanced at the seat behind me where Ben was sitting, chuckled, and whispered, "Oh--he's holding the moon."

From his backpack Ben had withdrawn the glowing moon that normally hangs on his wall. It's about 15-inches in diameter, concave, and filled with LED lights that illuminate intermittently to resemble the lunar phases.

Using the light of the moon, Ben reached into his backpack again and this time, in true Cat-in-the-Hat fashion, withdrew a full-sized dvd player and assorted cabling, and proceeded to connect his device to the car's existing dvd player--directing me as to the proper hookup of the cables into our vehicle's ceiling-mounted system while he handled the cabling in the back of his own machine. "Why?" I asked him? "Oh, in case the room I stay in doesn't have a dvd player," he said. "But why are we hooking this up to our car right now?" I continued. "Um...I just want to," he answered.

Still in a halo of artificial moonlight, Ben next withdrew a six-inch raw speaker woofer which he had recently extricated from an old karaoke machine. He explained that he needed this for the magnetic properties of the back plate. I asked him why, to which he replied, "Um...I don't know. I just do."

My daughter took Ben's backpack to investigate the remainder of its contents. All that remained were a laser-pen and two screwdrivers--a Phillips, and a flat head. "Why did you bring screwdrivers, Ben?" I asked? "Oh...just in case," he replied. A worried curiosity washed over me: Just in case what?

Turns out, those screwdrivers came in handy over the next week as Ben deftly removed all the hat hooks from his cousin's bedroom wall, disassembled a spin-art toy in order to examine the interior spinning mechanisms, and made an internal repair to one of his cousin's light-up vehicles. None of these things were done with permission or supervision, but none surprised us. Ben's favorite Christmas present last year was a carton of used, broken appliances that I picked up from the local thrift store, along with a new bag of tools. And whenever a replacement appliance or toy appears at our home, Ben's first request is that he be given the old one so that he can take it apart and examine the internal mechanisms. His room is littered with little screws, wires, cables, plastic and metal components of varying shapes and sizes...Sometimes I feel like a street performer who gingerly picks her way barefoot over a path of broken glass as I try to get to Ben's bed at night to tuck him in.

As I've reflected on Ben's choice of "good activities" for the trip, it occurs to me that he chose exactly the right things for himself--he brought the tools and supplies that helped him feel like he was in a comfortable, familiar environment. He doesn't love coloring or reading. He loves building and wiring, and figuring out how the world around him works. So he chose to pack things that allowed him to do exactly that.

As for the moon, I'm sure he had practical reasons for bringing it, too. Most likely he was anticipating needing a source of light once night had fallen, but there may have been an element of familiarity tied to it as well.

But I find myself reflecting on his lighting choice a little more philosophically than he might. Sometimes I think that Ben's mind, and his comprehension of things, is as mysterious as the universe itself. And yet, like a galaxy of stars, he brings a unique and gentle light to our lives. In his hands on the night that we drove to California, and in the center of his soul, Ben is holding the moon.

Crying over Spilt Milk

I really blew it tonight.

I thought that some cookies and milk before bed sounded like a nice snack for the kids, so I baked up a batch of chocolate chunk cookies and poured cold milk into paper cups for each of my four children. As I distributed treats to the older kids, Ben retrieved a giant tumbler from the cupboard and poured himself some milk--somewhere around two quarts of it. I knew Ben would not only not drink that much milk, but that he'd most likely spill it. So I took the cup from him, poured the contents back into the milk container, and then handed him a paper cup of milk as I had given to the other children.

And he lost it.

He slammed the cup to the ground, splattering milk all over the newly cleaned floor, cabinets, refrigerator, and range. He fired off a round of the most terrible yet nonsensical language you'd ever hear come from the mouth of a seven year old, and stomped upstairs where he proceeded to kick the walls, punch and abuse the long-ago-destroyed plantation shutters in his window, throw toys and books out of his closet and all over the freshly vacuumed bedroom and hallway floors, and once I finished mopping up the milk, I broke the cardinal rule of parenting an autistic child.

I lost it, too.

I yelled. He yelled back. I took him into a "basket hold" to prevent more damage to his room. He craned his head around and spit into my face. I held him tighter. He squirmed free and landed several punches and kicks on my arms and back. I threatened him with a cold shower. He screamed at the top of his lungs. I mustered all my emotional resources and left him in his room with a warning that if he didn't stop, I'd be back. He resumed his destruction of the walls and windows. I returned. And so it went for nearly 40 minutes.

I couldn't stay in the room with him because he continued to hurt me. I couldn't leave him in the room alone because he was literally destroying it.

All I could do was ask him, over and over, to use words. "Ben! Use words to tell me what you want! Just ask for what you want! PLEASE just tell me what you want--tell me in words!!"

At long last, when I had just begun to think that I really could not survive one more minute, he yelled, "Fine! Mom-will-you-PLEASE-get-me-some-milk?!" So, I did. As quickly and quietly as I could, I retrieved a paper cup of milk and a cookie, and brought them to him in his bed. I watched him in a haze of fatigue, heartache, and relief as he calmly dipped his cookie into his milk and consumed both with the gentle slurping sounds of contented childhood, as if nothing at all had interrupted a serene bedtime ritual. Three minutes later he was buried under his blankets, sound asleep.

For the past few weeks, I've caught myself watching internet video clips, t.v. shows, and movies about autistic children (The Temple Grandin Story is a particularly lovely movie, by the way, if you haven't seen it yet). Secretly, I've been hoping that the children in those clips and shows would not be anything like Ben. I've caught myself hoping that the language, coping skills, and behaviors of those other children would seem totally foreign to me. However, everything I've seen only reinforces to me that Ben is autistic, and my heart hurts.

So tonight I find myself sitting alone at the kitchen table, my arms and back aching from Ben's earlier blows, my hands still stinging from his fingernail scratches, and I can't seem to stop crying. I'm crying because I can't always understand him. I'm crying because I don't know how to "fix" him. I'm crying because I don't know how to reach him.

And tonight, when I trace the uproar of the evening back to its genesis, I'm crying over a paper cup of spilt milk.

The Tilted House

Last week, Ben came into my room and asked, "Mom, did you ever recognize that our house is tilted?" And then, with a flourish of hand motions, and speaking at a pace slightly faster than presto, he began to hypothesize that it's only tilted a little bit, that way (toward the backyard), but it's probably because the house is built on a hill and that's why it's tilted but just a little bit--did I ever recognize that it was tilted?

I had two reactions to Ben's announcement. First, I felt certain that if I were to drop a plumb line and hold up a contractor's level, I'd certainly confirm that the house is, indeed, tilted a little bit toward the backyard. That would explain why the door frames leading out to our back porch are cracked all the way around, and why the doors stick. Ben's mind works mechanically and geometrically--he sees shapes, angles, and connections differently from how most of us see them. If he says the house is tilted, then it most likely is.

My second thought was that the house is tilted, too, in ways that Ben never recognized, either. That is, our house is tilted toward him.

Not too long ago, as we drove home from church, my husband, children, and I chatted casually but loudly about things we had heard and learned during the meetings. Suddenly Ben said, "Mom--Mom! My teacher...." and the car fell into absolute silence while Ben shared his experience. When he finished, and after I issued the standard, "Cool, Ben..." in response to his statement, my daughter said, "Isn't it funny how we all just get quiet when Ben wants to talk, so that he doesn't have to keep starting over and over?" And I realized that she was right.

An old stock broker commercial used the slogan, "When E.F. Hutton talks, people listen." The same slogan could be applied to our house: When Ben talks, people listen. However, unlike the hushed reverence that E.F. Hutton commanded, Ben gets our undivided attention because if he doesn't, the house doesn't just tilt anymore--it begins to crumble. I've written previously about Ben's struggles to complete a thought without starting the sentence over half a dozen times. If he gets interrupted at all while he's trying to speak a sentence, he has to start over, and each time that happens he becomes a little more frustrated until finally he loses track of his thought altogether and descends into a flurry of shouting, spitting, hitting, and throwing objects. By then we've reached a point of no return--and everyone in this house has learned that it's much, much better just to make sure Ben can speak without interference of any kind.

The house tilts again toward Ben whenever he gets upset. Because "upset" for Ben doesn't look anything like "upset" for me, or Chris, or the other kids, or anyone else I know, really. "Upset" for Ben looks like a tornado in the middle of a hurricane during an earthquake. If he forgets what he wanted to say, or if he feels like he has been treated unfairly, or if he can't beat a level on his computer or Nintendo DS game, Ben screams--sometimes obscenities--, punches and kicks people or objects, upends furniture, tears books and papers, and throws anything within reach...and I do mean, anything: dishes, tools, toys, cats, etc.

And what do we do? We take cover, usually. If I can get him into his room, he'll spend several minutes throwing heavy objects at his door, but on the best days he'll eventually climb into his bed, pull the blankets and pillow over his head, and just stay there for up to an hour until he feels back in control of himself. The quieter and darker, the better. I have to resist the urge to go into the room with him to try to talk it out--that never works, and only stirs up more agitation. He just needs quiet.

The other solution when he's raging is to coax him into the shower, where he finds sanctuary in the solitude of the location and comfort in the regular patter-patter-patter of the warm water over his body. He will spend hours in the shower--long after the water has gone cold, actually--creating machines and contraptions out of his collection of shower toys that grows bigger with each new shower. Sometimes we enter our shower to find it six inches deep with buckets, dump trucks, cups, toy cars, plastic tools, balls, bowls, and various other toys and receptacles that Ben has been using as part of his creative--and soothing--process.

A couple times, I've gone in to retrieve him from the shower to find the water cold and Ben's body bluish, and I've said, "Oh, Ben--why didn't you get out? You are so cold!" He just responds, "I'm not cold. I don't feel cold. Do I have to get out?" Fortunately, he rarely resists a warm, fluffy towel in those moments, and most importantly, the rage that propelled him into the shower in the first place has long since passed.

Yes--the house is tilted. Physically, probably. Emotionally, definitely. We tilt toward Ben, when he talks, when he's angry, and when he's doing well, too...just to make sure he stays that way. After all, a tilted house is much better than one that's falling over entirely.