by Allison Lindsay Shea
age: 17

Beach houses always have massive windows that make clear how intricate the sky can be, not on days when all the clouds have dissipated, but on days when there are so many scaly clouds that the sky looks sort of like it’s covered with big fleshy mushrooms.  On other days the sky is flat and sifting in grays; the colors mesh so fantastically slowly, like gases on the Earth when it was new and yawning back and forth. On those days the sky looks like a primordial soup from which a wriggling prokaryote could come and move pathologically across huge stretches of sky.

Right now, my little brother John is floating around in the pool (of the beach house we rent every summer and sometimes at Christmas), with his t-shirt pulled up over his head so that his face is completely covered and he is shaped like a little mountain.  The water is too blue to be alive with the swimming protists and sinewy plants; there are no water-walking bugs. All there is is the weird acrylic shine of a halo sun on the chlorine-ridden water, and John. I guess he’s half-asleep, with his mouth just barely touching the surface of the water, with his eyes closed but his senses alive and extending like tendrils through the pool.

John likes to be in the water, because when the water covers all of you, it fills you in like gelatin. Makes the pressurized ends of your fingers pulse with tight, round ends.  Makes your heartbeat throb just more subtly, like the percussion breath of an undulating sun through the air.  During the summer, when my brother “goes to sleep” in the swimming pool, with his black t-shirt pulled up and covering his head, I can imagine the sounds reaching his ears — when he moves, the water makes little phosphorescent noises. 

I have been watching John from a big beach house window; I can see him like I’m looking through a compound microscope. “Mom, do you want me to go outside and get John soon?  He was floating around in the pool.”  I see John pull his face free from his stretching wet t-shirt and he seats himself on a poolside chair, resting his head back. And he sleeps, sometimes speaks.

I don’t know when I first understood that my brother John was not like me or my sister. We were almost always downstairs, tinkering with some implausible project.  We began writing scripts for musical extravaganzas and then moved on to making miniature amusement parks out of straws, strings, and small cars. We put on a poetry reading with our dolls. “Ozymandias,” “The Charge of the Light Brigade.”  The big words were a rich something on our tongues.  We knew how to take those words into our spongy brains like through osmosis.  But then those words just as easily seeped out — pedantic leakage, happens to people who know but don’t understand. John had a few simple words.

My little brother wasn’t in the basement with us. He was sitting on the carpet upstairs, looking sweet and odd and dependent upon videos for fantasy and entertainment. Mom often asked us to do things with John. When I was little, I was very shy around him and didn’t understand what games he enjoyed. Normally, I sat with him, both of us almost swallowed up in a big, enveloping couch cushion, and we read short books – the sorts of books about farm animals mainly, or about Muppets. I feel stupid now, because Mom has told me that I didn’t know my little brother was autistic until at least three years after he was diagnosed. “We didn’t want to make you have to worry about it. You were just a little kid.”

For a very long time, John was “Baby John” and he remained a babbling baby much longer than was normal – I didn’t notice that.  My Mom has mentioned a few instances in which John said something so clearly that he sounded just like a normal little boy.  “Come on it’s time to go…” was I think one of these things — maybe John’s brain cells were interlocking perfectly for that moment.  Moments like those did not make my parents believe that John’s autism would all of a sudden disappear — once it’s there it is absolutely indelible, although in some cases the child improves dramatically.

John was surrounded by a small army of therapists — Applied Behavior Analysis Therapists, Sensory Integration Therapists, Occupational Therapists, Speech Therapists, Auditory Therapists, Behavioral Therapists.  They lost the battle for early intervention success with John.

In old photographs, John has a cherubic face with a screaming and laughing smile on it most of the time. He is round but lithe in his baggy blue clothes, and his fingers are spread out, lots of times grabbing for something in front of him. The cameraperson, the all-of-a-sudden light.

In my favorite picture of John though, he looks like he’s grasped something that satisfies him, and he is content with this palpable complacence in his hands.  He’s sitting chubbily at an outside eatery at the beach, fingering a huge lumpy chocolate chip cookie, diameter 12 inches. What is there inside that picture frame that is special?  It is a picture of the most joyful John. I would love to pull him from there, grab one of his fingers, wrench him from the sticky photograph. But the picture frame is black and chapped — the frame for a television set. I hate television sets. There is no way of escape from the bleak yawn of the T.V. square. I will never know how to free him from that thing that surrounds him now.

My little brother is not five anymore, but almost 13. He sits in what is called the Family Room but what should instead be named the John Room, surrounded by black towers of videotapes. John ignores how slippery the videos are, how dangerous it is to stack them so high. They are like precarious Disney towers, cock-sided and forming castles. On the television, frenzied animations entrance him.  John has giant yellow bouncy ball that he sits on, rocking back and forth in front of the television like a happy Buddha on the Sun, filled with all the knowledge of the Earth — the Disney version.

“Okay Johnny, just a second.  I’ll get you butter in a second.” I am probably doing homework at the kitchen table when he asks me. John is hungry after a school day and impatient for his butter, so he asks again, and when I don’t move he will repeat what I have just said to him…is it out of frustration? Curiosity? He wants to learn how to say it, too?  This is John’s compulsive behavior, which every autistic child has in some form.  Perhaps in an odd attempt to communicate with us, John has compiled a string of unrelated words and phrases he seems to never tire of making us repeat.

“Snappy…” from making sure his underpants are pulled up tight. “Cut finger…” from when he hurt himself. “Don’t bite…” sometimes he chews on his wrists when he is very frustrated. “NO kicking…” don’t kick things just because you’re angry, John.  “Fish, wawa, ring, finger, Mom, John Shea, careful, mm, hee, broken, people, doesn’t work…” The full chain of words is very long. They are words derived from instances of being little, being in trouble, taking trips, riding in cars. This is the scrapbook, compiled by John, that resides permanently in our heads. It is our good morning, good afternoon John, and goodnight. My dad and I often joke about this weird montage of unrelated stuff.

“Maybe somebody thinks we’re terrorists and it’s like…our secret code for communication.”

I think about this. “Could be, Dad.”

“A family of five was seen in a restaurant chanting strange, unintelligible words and banging their hands on the table. An obese young man was identified as heading the strange proceedings.” He says this in the urgent, low voice of a news anchor, but it is punctuated by laughter.

John is severely autistic and when he goes to school the teachers who deal with him are sometimes overwhelmed. If knowledge were a stone thrown on the water and the concentric circles were growing facts, ideas, and connections the mind makes, John’s circles would be few and close together. Teachers try, John tries, but the knowledge doesn’t grow much. I often wonder how his mind works.

Do the things in his mind make mooing sounds and go A, B, C, or do they fall and ripple and tear-up and form mosaics of intricate plasmas…golgi bodies, dreams with little flagella that can move so far?

When John comes home from school we open his notebook and often find there is nothing written inside of it. Or else this: “John had a pretty good day today. We worked on adding money and sight words.” We cannot ask him, “How was your day, John?” We can ask him this, but the answer is invariably, “Gooda.” John has learned to say this in response to that question. What if John’s day is so not good that it would pain you to know? Does he feel like he is at the park, in a small rowboat all by himself — he just doesn’t know where everyone else has gone? I hope he knows we’re right here. We don’t know if it is the best thing to know John’s limit — he may have stopped learning at the age of seven, eight, or eleven. Or maybe there’s an eroding, particle-by-particle, of this disorder, and in the far-far future autism will vanish and John will be sitting with us, shining, laughing, talking and asking us questions. Telling us that his day was maybe not too bad, better than yesterday.

And at the end of the not-too-bad-day, I can brush his hair off his forehead and kiss him there and say “Goodnight.”

“Goodnighta,” comes the reply from the depths of the blue comforter.

Go as fast as you want into the best sleep yet and don’t come up until you’ve filled yourself with beautiful sensory things, and maybe somehow in the morning you’ll know how to talk to me. What I want to know most of all is what John is dreaming of now, but he cannot open his head to me. His head is the treasure trove of the pillows. Underneath in his downy pool, he says “Goodnighta” with the sound of underwater ripples.