Saturday, November 6, 2010

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.


  1. I know why I love to read these blogs,Heather, not only are they beautifully written, they always remind me of me-on both sides of the autism window.

    Sometimes I identify with Ben and sometimes with you, sometimes both at the same time. Not long ago I saw a writer (cant remember who)interviewed on Between the Lines and Barry Kubrick, the interviewer, said that he felt that everyone was on the spectrum -maybe that's why I follow your blog so faithfully.
    ...or maybe it's because it makes me so grateful that Ben has such a wonderful family and such a great chance at life.

  2. Thanks, P. I think you're right--I think most everyone finds him/herself on the spectrum at least from time to time, if not regularly. When we feel introverted, that's a spectrum-type sensation. When we can't express ourselves effectively and get frustrated, same thing. These lovely kids aren't nearly so different from the "non-spectrum" world as we sometimes think! I appreciate your comment very much!

  3. Thanks again for sharing. I really miss my Ben. I have often thought if we were smart like Ben we would find our peace like he does when we are overwhelmed. A quiet dark room, soothing warm water, etc. Maybe we could learn from Benny! Maybe we could learn to control ourselves more as well. Miss you guys