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A family thrives in the shadow of autism

In ‘Making Peace with Autism,’ Susan Senator describes her life as a mother raising an autistic child, and offers advice. Read an excerpt

Weekend Today
updated 12:02 p.m. ET Oct. 7, 2005

In “Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts,” Susan Senator describes her journey of raising a child with a severe autism spectrum disorder, along with two other boys. Senator offers valuable strategies for coping successfully with the daily struggles of life with an autistic child. Senator was invited on “Weekend Today” to discuss her story. Here's an excerpt:

Prologue
It's 4:30 p.m. Thursday, and I notice it's raining. Oh, no, I think. How am I going to do this? I set my coffee cup down, get up, and walk into the playroom. Ben, five, my youngest child, is sitting on the big yellow chair, absorbed in a video. His brother Nat, fourteen, is sitting on the floor at Ben's feet, also watching the video, which is Disney's Pocahontas. My gaze lingers on them idly for a moment. I notice, as I often do, that the two boys, one large, one small, have exactly the same profile, the same blond bowl haircut, the same intense stare. The same movie interests. I take in the action on the television screen to gauge where they are in the movie. I hear the Indians singing “Steady as the Beating Drum,” and I sigh in despair. It has only just started, and I have to interrupt them; because of the rain, I have to get Max, their middle brother, from his play rehearsal. I have to change the routine.

The rain is now coming down hard, absurdly so. I clear my throat. “Guys.” Nat looks up immediately, already wary. Ben does not even seem to hear me. I consider for a second an ironic question: Which one is autistic here, and which one is normal? “We have to get Max now,” I tell them, hoping that my tone of voice conveys just the right mix of authority and empathy so that I can avoid a fight. This is, after all, an unpredicted change in schedule.

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Ben has heard me, of course. “Aw, Mom,” he says, but he is sliding off the chair, Pocahontas soon to be forgotten. Nat is out of sight, presumably fetching his shoes. Maybe I am out of the woods. But as I turn to gather my keys, I jump at the sound of a sharp, loud scream coming from the closet, like the yelp of a dog: “AAARGH!” He is coming out of the closet with his shoes.

“Stop it, Nat!” I say. No empathy this time. My response comes from pure frustration and annoyance.

Nat comes back into the room. He looks at me and says, “Get Max now” in a voice close to tears. Then he screams again. The sound cuts right through me. I clench my teeth. I have to gain control — of myself, of him. I focus on the distress in his sapphire blue eyes and hoarse voice, and from way down inside somewhere, I summon my tired but immutable love for him, my fragile firstborn.

“Nat. We have to get Max. It's raining. I'm sorry I didn't tell you. I didn't know.”

“AAARGH!” Again.

My compassion evaporates. I take a step toward him, menacing. “Stop that,” I say through my teeth, as angered by my inability to reach him as by the screams.

He draws back and says, “Get Max! AAARGH!” His pupils are so dilated that his violet eyes are now black. “Nat. Stop. We have to go.” I sigh and wonder how the hell I'm going to get him into the car.

“AAARGH!” Now he runs past me, stomping loudly. My heart thumps hard. I remember the red pinch marks he left on Ben's arm, just two weeks ago. I race over to stand between Nat and Ben, who is standing at the top of the stairs to the basement.

“No, Nat!” Ben shouts fiercely. Nat is twice his size, but Ben is ready to defend himself. But Nat barrels past us, down the basement steps. We hear the slam of the back door in the basement. Ben and I follow him to the car. The rain is pouring down our necks like water from an open faucet. Nat is waiting in the driveway, sucking his thumb, drenched and oblivious. I settle the two boys into the back seat of the car.

“After Max, watch Pocahontas,” Nat says tearfully, “After Max, watch Pocahontas.” His mood has shifted suddenly. For whatever reason, it's over; he will cooperate now.

“That's right, sweetheart.” I sigh in relief. I pull out onto the street, windshield wipers flapping crazily. I turn down the next block. There, walking toward me, head down against the rain, is a tall boy with thick blond hair that sticks out from under a camouflage hat. It is Max, looking as though he's showered in his clothes. I pull up to the curb and open the car door.

“Oh, honey, why did you walk in this? Why didn't you wait? Or call me?”