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Make A Wish For Me: A Family’s Recovery From Autism

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        You’re Losing Him

 Jenna is outside, digging in the sandbox. Ryan is inside by the toy box, playing with a car. I am literally straddling the screen door in order to watch them at the same time. Standing that way, I’m sure I must look ridiculous. But how is a responsible parent supposed to properly supervise both her children? I am bobbing my head back and forth like I’m watching a tennis match, sure not to miss a thing from either of them. Jenna: dumping sand onto the pavement by the bucketful; Ryan: turning a car over and staring at the wheels; Jenna: dumping another bucket onto the pavement; Ryan: spinning the wheels and staring at them; Jenna: singing “Peanut Butter and Jelly”; Ryan: spinning the wheels…

Divine intervention is described as “a miracle caused by God’s active involvement in the human world.” It’s been portrayed in the movies with special effects like a flash of lightning, or a change in the weather, or perhaps God himself appearing. I describe it as a fluid voice.  In the midst of my neck volleying, a voice says, You’re losing him.

I jump and look around to make sure no one is with me in the room. The words are so lucid, they almost seem to have been said aloud and not in my head. As I finally exhale, my heart begins to beat fast. I don’t know for sure whose voice it is, but I know it; it’s familiar—it could be my own. But I am so shaken by the power in the words, it might as well have been God himself. Hearing a voice is one thing, but the truth behind those words has to be from a divine source. The strength of the message literally shakes me to my core.

            Losing him . . . how? Where is he going?

Fear grips me like a character in a horror movie when she realizes the killer is right behind her. I remember when I was twelve and I came home late one evening. I was a typical latchkey kid of the times. I rushed in to do my chores before my parents came home and didn’t notice for several hours that the window in the kitchen was broken. All the while, the intruder waited upstairs for it to get dark. I began to search for the intruder after I discovered the broken window. But, by God’s grace, I didn’t look in his secure hiding place in the shower. I’m lucky he just wanted to get out unseen. When his partner turned the power off outside and I saw his shadow move rapidly past my room, I let out a scream I didn’t know I could make. I felt completely paralyzed with fear. I was truly frozen for a full minute.

Standing in my doorway today, I want to let out that same scream, and I don’t feel so lucky. What just happened? I have that same sense that someone is there as I did all those years ago. Again, I’m too paralyzed to move for a second. I stare at Ryan and wonder; my hands begin to shake as I cover my mouth to hold in my cry.

         Have I been losing him this whole time?

I stand there for a long time lost in a time warp, my mind whirling. Losing him? I can’t lose him. These children are the best thing I have ever done, my best accomplishment. I will not allow him to go anywhere.  You’re losing him feels like a proclamation, though, and it makes one thing clear to me: no more pussyfooting around what’s going on with my once-docile toddler. It’s rare I can even calm him down after some mysterious event pushes him out of control. His screaming, crying, and flailing come upon him with such force, it’s as if an invisible hand has reached out and swatted him, stirring up his beehive of reactions. He no longer eats the foods I put down for him. He wants only Cheerios, Goldfish, chicken nuggets, and milk. Gallons of milk. He refuses anything else to drink. Even his sleep has changed; he has reverted to infant hours. I am up most of the night with him. I finally asked Dan to help me get up with him on the weekends. And he’s just that: “up.” No reason. Just wakes up at midnight and isn’t ready to go down again until 4:00 a.m. That’s the worst part for me. The entirety of our existence feels unstable because Ryan’s whole being has changed from a sweet baby to an angry, unreceptive child I can no longer recognize, predict, or help.

It’s not often a “voice” can speak so clearly to you and also evoke such fear. I have no intention of ignoring it. The matter is not whose voice it is; it could have been my mother warning me. It could have been my own voice reaching into my unconscious to pull out what I already knew. But it doesn’t really matter—the message has been delivered. I also get the point that it’s my job to figure out why my son has changed so drastically.

The determination that overcomes me is like none I’ve felt—I stand taller, and grab paper for notes to start making calls and getting to the bottom of this. The voice has given me an ominous feeling that I have to hurry to find out what is making my son so unhappy. I do not want to lose my baby boy any more than I have.

                            The Article

Walking in the front door after my usual weekday morning gym visit, I can hear the TV blaring cartoon sounds. Dan is around the corner in the bathroom, hidden behind the newspaper. By quick estimation, he has just sat down, since the floor is clean. When the floor is cluttered with completed sections, I know he is almost finished. His usual bathroom time is twenty minutes, so I’m guessing he’s only a few minutes in. I don’t understand how or why he can sit that long for something that should take only a few minutes. “Good morning. Everything coming out okay?” I ask sardonically. That’s usually his line when he interrupts my bathroom time. He mumbles something I’m sure is a witty comeback, but I continue on without stopping. Deafening noise is letting me know one of my house munchkins is up, and I’m curious which one it is.

When I round the corner, the first thing I see is my cherub girl sitting in her kid-size “big girl” chair, glued to the cartoon Danny Phantom. Her thin, almost white hair is knotted and standing up in the back. Jenna is an active sleep talker, so her hair often gives away how many stories she told in the night. “Good morning, punkin’ head,” I say to her back. No response, so I step closer and say loudly, “Good morning, Jenna.” She turns around and grins—“Hi, Mommy”—then turns back to the TV. I kiss the top of her hair and pause to take in her smell and grab the remote to punch down the volume. “Did Daddy get you something to drink?” She holds up her sippy cup to show me, not breaking her gaze from the screen. “Where’s Ryan?” I ask her. “He seeping,” she says, still not looking up. “Oh.” What’s a mom to do when there’s nothing to take care of?  “Okay . . . well, I guess I can have my breakfast,” I say to myself, and walk into the kitchen. Coffee. Ah, thank goodness Dan made coffee for me. After pouring the stuff that makes my morning complete, I rummage through the cabinet and decide on Cheerios, a longstanding childhood staple in our house and one of Ryan’s new obsessions. I fix myself a bowl and sit down. I glance at the TV to see which episode Jenna is so engrossed in. I can’t figure it out, then realize I actually don’t care and lose interest entirely. I turn back to my cereal and notice the other newspaper sitting on the table. Dan gets the Los Angeles Times and the local paper. When was the last time I actually read a newspaper? Dan finds time to read both of them every day. I guess if you invest the time he does in the bathroom, you can accomplish that. My bathroom visits are under two minutes, for fear of being interrupted, and for the kids’ safety. You can’t leave a three-year-old and a toddler alone that long. Just one more thing mothers are robbed of: leisure time on the toilet. I glance down at the paper again. By some luck I have been granted a spare few minutes to actually sit down to eat, and the paper is open, almost waiting for me, so I pick it up and see:

       For the autistic child, time matters. A diagnosis at age two—or even earlier—could make a difference.

“I don’t think he’s autistic,” his first pediatrician had said loudly to me over Ryan’s screams a few weeks before. I asked for an exam because Ryan had stopped talking again. He had a second set of ear tubes, but his words hadn’t come back. Autistic—what the hell was he talking about? The only reference I had to autism was the stereotypical film version: Dustin Hoffman in the movie Rain Man. I scan the words in a side column:

     Behaviors to watch: not cooing or babbling . . . indifferent to others . . . fixation on a single object . . . strong resistance to change in routine . . . any loss of language.

 The last words practically jump off the page—any loss of language. My heart stops, and I drop my spoon loudly. Ryan has lost his words—twice. Both times seemed coincidental to his having ear tubes, according to the doctors. And though I have asked and asked why he isn’t talking again, every doctor I have spoken to continues to push my questions aside. I have enrolled him in speech and occupational therapy on my own, to feel as if I am moving forward to help him, but even the staff there haven’t told me anything. “He doesn’t need a diagnosis. His treatment would be the same,” the lead speech pathologist at our Tri- Counties office told me. Diagnosis? For what? How could he receive the same treatment if he had a diagnosis? This made no sense to me, yet I felt I had to do something to help him. So I continued his sessions, not convinced anything was improving. His silence was becoming frightening, especially coupled with his tantrums. Deep down, my mother instinct was saying they were related. “He’s fine—he’s a boy. He’s fine—he’s a second child; his sister talks for him. He’s fine—he’s had ear tubes twice,” the pediatrician and the ear, nose, and throat doctor both told me, sending me away with a nod and a pat on the arm that was supposed to calm my fears. “He’s fine, Mrs. Chergey; stop worrying. Just wait—it will come back.”

Wait? For what? I feel an urgency but don’t know why, and no one wants to deliver any news to me, even though I have been chasing my tail trying to figure out why my son has changed. As I sit there, holding that paper, I feel as if all of my questions are finally in black and white in front of me. Yet I don’t want this to be the answer. I hear the voice again—you’re losing him—and I brace my hands on the table for balance. I begin to see his short life in a flash of images in my mind: the unhappy infant, continually waking at night; then, at four months, lying on the floor, a happy pre-tooth face; walking unsteadily toward me with a four-toothed grin at a year old; and then having a tantrum like I’ve never seen. He screeched at Jenna for touching his Thomas train and lunged at her full-force, hitting and grabbing her hair and kicking. She was just as surprised as I was and curled up to protect herself. After I pulled him off, properly reprimanded him, and strapped him into his high chair, I snatched a sobbing Jenna into my lap for hugs and comfort. At the time, I tried to laugh it off as his finally getting back at her for all the times she pinched or hit him when he was a baby.

       Early intervention is the key to providing any success in an autistic child’s future.

I cannot read the letters anymore, between my hands’ shaking and the tears that have filled my eyes. These behaviors are all too close to his.

       Autism spectrum disorder. 

That’s what they’re calling it? A spectrum? That sounds like a rainbow sticker for gay pride, not a name for what isn’t right with my son’s behaviors. I begin to read the body of the article with such intensity, I don’t hear Jenna asking for milk. I don’t see my husband go upstairs. I read every word, twice, and begin to feel a sensation of being the subject of a camera zooming in. My life has been laid out in these words, and I didn’t know it. There is a “spectrum” of behaviors that a child can be placed on. How do you place a child on a spectrum? It sounds so gentle, so kind, yet I feel like I am beginning to slide down a slope I can’t see an end to. I know I have to talk to Dan. I have to show it to him. Let him read it. Let him say how silly I am and that I overreact to everything. He’s fine. Little Ryan is fine. He doesn’t play with his sister because he’s still in “parallel play” mode. He carries Jay Jay and his trains around because he loves the characters so much. He’s protective of his toys; that’s why he hits. The wheels fascinate him because he’s going to be a mechanic. His ear infections caused him to not hear so well —that’s why he stopped talking—and he’s just . . .frustrated . . . I am standing in the bathroom with Dan, and I didn’t even realize I had walked up the stairs. Dan looks at me from the mirror, and I glimpse my reflection. I look terrified. “What is it? What’s the matter?” he asks. “You have to read this—just read it and tell me what you think.” Tell me I’m crazy, tell me I’m wrong. I am shaking so hard, I have to sit on the edge of the bathtub. I wait. . . . Thump, thump, thump goes my heart. And wait. Dan is a slow reader. I wait and feel my heart pounding harder in my throat. He isn’t saying anything. His face is tight. He puts down the paper and looks at me. “Let’s get him tested.” I sink to the floor and begin to cry.

LeeAndra M. Chergey was born in the Midwest, but grew up in a pastoral area south of Los Angeles. She holds a Bachelor of Arts in English from Cal Poly, San Luis Obispo and currently runs her own home staging business. When LeeAndra isn’t writing, she enjoys running, knitting, and reading. She lives in Simi Valley, California with her husband of twenty years, Dan, her two children, Jenna and Ryan, and a black lab, Ranger. www.okaysothenisaid.com 


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