Caged

Guest post by Jeff Stimpson

 

Down our bedroom hall, out of the darkness, looms his white T shirt. From the dining room comes a pad-pad-pad from where there should be only silence. "And here he comes," says my wife Jill. Alex appears in the night, clears the foot of our bed, brushes the laundry hamper, and bounds onto my abdomen at 1:04 a.m.

 

"Mommy. Daddy. Go sleep," says Alex, squirming between us and elbowing me in the stomach.

 

Ever since my typically developing two year-old Ned recently evicted him from his crib, Alex has been sleeping in a fold-out porta-crib. We know this isn't normal for a 4-year-old. We tried to get him to sleep in a bed last winter. I sat with him for hours on the mattress on school nights, rubbing his back and telling him to sleep on his bed, while he sucked his binkie and wormed his way over the railing to scoot for the toy shelf. On weekend nights, after we'd spent the day running him into the turf on playgrounds, Alex would actually fall asleep on his bed. Once, I think, he stayed there through the night. Most bed nights, however, we heard the pad-pad-pad and saw the gleam of the T in the small hours. Jill and I tried returning him to his bed a few times.

 

Then we hatched the idea of setting up the porta-crib before bed to have it ready in the middle of the night. We'd deposit him in the cage - three-foot-high walls of soft white mesh - give him a sip of a water and binkie, hand him one of my T shirts and a stuffed Elmo, and watch him burrow into the blankets. We meant to keep trying Alex and the bed. But somewhere in there, doctors and teachers started harping on his terrible attention span, and then we had to get through an endless Christmas vacation. Alex and the bed just fell from being a priority. "I would hate to see your energies go in that direction," said one of his preschool therapists, who had given us a long list of other things to pay attention to with Alex.

 

So, night after night I'd pull the porta-crib out from over near the oxygen tank, undo the big rubber bands we used to keep the crib collapsed during the day, and whip the thing together. I hated it for a time: the savage clicks of the locking rails, the way they wouldn't lock unless you had the floor mat positioned perfectly. I hated it and blamed it for Alex, almost four, still not sleeping in a bed. Then gradually the clicks of the locking rails came to signify the end of another day. The final moments before a glass of Pinot Grigio, "Seinfeld," our own dinner, slumber almost never disturbed by the boys for 12 hours unless one was sick. By the time we'd cleared the dessert dishes, night after night, we'd step into the boys' room and find them both out. Alex would be sprawled in the bottom of the porta-crib; I'd reach down and pull him straight if his head seemed cocked at an uncomfortable angle. He's getting tall, I'd think. Wonder when he's going to climb out of there?

 

He climbs out of there one sudden night, and our energies cascade toward putting Alex first in the porta-crib, then in the bed, then back in the porta-crib. Finally, Jill pulls the door of their bedroom closed. "That sends a message," she says.

 

I hear the knob rattling, followed soon by the cries of the prisoner. I open the door. "Alex," I say, "back to bed!" Back he goes, bouncing up on the mattress, burying his face in the blanket, clamping his eyes shut in an elaborate pantomime of drifting off that will evaporate as soon as I close the door again behind me. (Ned, incidentally, can't believe he's scored front-row seats to this. Sensing something new was unfolding in his household and that soon it might involve him, he bounces on his rump, rattles the crib springs, and drinks himself into a stupor on water and Rice Dream.)

 

Out I go. Rattle rattle rattle. In I go, and place Alex in the porta-crib. He hoists one leg over the side. "Alex, put your leg down," I say, careful to not touch him. "I know. You've got this new freedom and it's exciting. You're growing up, Alex. You're getting bigger. But it's time for sleep." I set the ottoman beside the porta-crib, as if I were handing a shovel to a POW. (Jill and I have both seen him get out, by the way, and he always lands straight and on both feet.)

 

Times have changed, I tell Jill. There's another, real bedtime to consider in this house now, announced by the rattle of the knob. "He's out of his cage," I say.

 

"It's not a cage," Jill says.

 

"It is a cage," I say, and we were the ones in it.

 

 

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism(both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

 

In the Swim

by Jeff Stimpson

Alex is taking swimming lessons. Alex's classes are in a three-pool, indoor center about a three-block walk from the bus stop, and all the way he rode on my shoulders as I warned him he was going swimming in a big bathtub. "Alex, you're going swimming," I kept repeating well into the locker room. He must have wondered why T shirt, denim shorts, diaper, and sandals were swept away right here in the middle of the day, and replaced with a pool diaper and flowered shorts with a string in front.

If Alex was puzzled, he got over it in time to scoot off to the toilets. He loves toilets, though he's only just started to notice a full diaper. He does love to flush. I heard the rush of water, over and over, while I squirmed into my trunks. This class, for special needs kids, takes place in a pool of some 200 square feet, which has an adjustable bottom that can range from a foot deep to about the depth of my stomach. I was to be in the water with Alex. We thought he would take to swimming, based on how he likes to splash and kick in the tub. His therapists have also told us that swimming would slow him down and increase his attention span.

The first lesson starts at 4 o'clock. He wails until 4:30. "Alex, it's just water," I kepp telling him. "You know water."

"Noo! Noo!" he replies, his mouth a rectangle of misery and his cries ricocheting off the tile walls. His tears could fill their own pool. The instructors include a patient, cheerful, burly, young man who had the face of Crazy Horse tattooed on his arm. "Give me five, Alex," he says, and Alex does, limply, while I sneak his feet into the water.

"Stop it," Alex says to me. "Stop it." I want to drown.

"Alex, c'mon." But I have no clue how something as alien as a gigantic swimming pool center – the echoing tiles, the lapping water, the splashes and screeching – settle in Alex's brain. Maybe he just doesn’t understand.

I swish Alex from side to side; show him how to blow bubbles; hold him while he floats on his back; have him hug me as I reach under him and make his legs kick; catch him when he jumps from the side of the pool; hold him high and then bring him down with a splash; and show him how to kick off. First, however, I must get his feet wet, then his legs, then carry him to the center of the pool. He refuses to blow bubbles, but he does giggle when I bring him down for a splash. Then he seizes the side of the pool, no doubt thinking he can finally get the hell out of the water and back to the locker room toilets where he belongs.

"Attention's his big thing, isn't it?" the instructor says. "But he's got a bicycle kind of kick, and he's moving all the time. That's good."

When it comes time to practice arm motions, the instructor makes a fine tactical move by breaking into "The Wheels on the Bus." Alex laughs. "He's got an infectious laugh!" the instructor says. He does, and by the end of the first lesson that sound too ricochets off the tiles. A little. "Alex, you're <I>swimming<I>!" He looks tired, as if he'll faint in my arms the moment class is over.

"Stop it," he says. "Bye! Bye bye!"

I maneuver Alex to the side of the pool. "Everybody, Alex is leaving!" the instructor says. "Bye, Alex!" they call. "Bye BYE!" he calls back, then bolts for the locker room. There, as soon as I have him in yet another diaper and my own hands are occupied prying off my trunks, he heads for the toilets. Across the tiles, over and over, I hear the rush of the kind of water I guess he still prefers.

Jeff Stimpson lives in New York with his wife and two sons. He is the author of Alex: The Fathering of a Preemie andAlex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon) and has a blog about his family at jeffslife.tripod.com/alextheboy. He contributes to various sites and publications on special-needs parenting, such asAutism-Asperger’s Digest, Autism Spectrum News, the Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Feeding

Today we see the GI. Last night I told my wife Jill that we're just to get his opinion and realize that we're not going to change it. We think Alex (born three months premature 19 months ago) still weighs about 20 pounds. Nineteen, maybe. We see Dr. L., whose instructions we've ignored for so long that to go back and follow the instructions now would be an impossible backtrack. We're not using the feeding tube. We're sure Dr. L. will order us to. We will then refuse and have to find another doctor.

Jill and I have one goal at this meeting, and only one question which was recommended by one of Alex's therapists: What does he have to do to get rid of the feeding tube?

Gain weight, obviously. We feed him all he'll take – sweet potatoes, bananas, prunes, applesauce spiked with heavy cream, cereal and maple syrup, Pediasure and fortified babies' yogurt. It totals about 30 ounces a day. I've stopped counting. I have no clue how many ounces of Spam I had for lunch yesterday, how many milligrams of spaghetti pie I downed for dinner last night. Counting the ounces made me feel like Alex still belonged to the hospital.

In Dr. L.'s office, we unhitch Alex from the carriage. He takes off, crawling to  the receptionist's desk. Slap slap slap go his palms on the tile floor. I trail after him with the small oxygen tank. He crawls up to strangers and tries to crawl into the back hall of examination rooms. I go to remove his cannula.

"Don't do that!" Jill says. "I don't want him to burn calories. Ever."

He's still burning them, though, when Dr. L. appears. He has glasses, a gray goatee, a soft voice and light-blue eyes. A year ago, when other doctors wanted to do an even severer surgery on Alex, he was the only one who said we did the right thing by just getting the feeding tube.

We go to his office; all the grown-ups take a seat. Dr. L. asks me if I have a cold. I say I caught it from Alex. He asks if Alex has been retching, coughing, or choking? No, no, none. What is he eating? We tell him.

"All by mouth?" he asks. Jill answers most of the questions as Alex twists and scrambles in my arms. He needs a change; it takes three of us, a binkie, and a plastic toy. Then he's weighed. Remember that number, Dr. L. says, wrapping a tape measure around Alex's skull and tries to get Alex flat for a length measurement. Alex won't even lay flat to get a diaper change anymore. The measurements show that, since his last appointment eight weeks ago, Alex is shorter by about 10 percent. That would be like me waking up tomorrow and being 5'4". That's the kind of measurement you get when you try to measure a boy who moves the furniture.

Dr. L. puts pencil to graph, however, to draw a dot marking the spot of Alex's new weight. Strung together, the dots make a curve that flattens and is drawing farther and farther from the big blue shaded area marked "normal." Once dots on a graph start looking like that, doctors can do one of two things. Most will hold up the chart, hold up the pencil, and use the two props to let you have it. Or they can do something else.

Dr. L. lets a short silence linger before saying, "Well, you know as well as I what has to be done. What is preventing him from 

taking 35 or 36 ounces a day?"

I don't know. Alex just always turns away after an inscrutable and insufficient number of spoonloads and bubbles up the bottle.

"I don't mind him being a little thin, as long as his brain continues to grow," Dr. L. says. He used that phrase two appointments ago, to Jill's terror. He goes on to say that as Alex's metabolism increases, he will burn more energy and need more food. Won't Alex get hungrier as a consequence? I ask. "Not necessarily," Dr. L. says. "Boy, look at him. He reminds me of a perpetual motion mobile."

I listen to Dr. L. <I>Get to the point,<I> I think. We are to go home, feed him as much as possible, and check in with Dr. L. again in two weeks. Boy, we think, it pays to dread the worst!

That night, after Alex’s bath, before I can get the diaper on him, he urinates on the floor. Our disgusting little animal, our dear little son. I get a diaper on him and it seems loose. Then we feed him yogurt, applesauce with cream, bananas, and formula. He takes 29 ounces.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism(both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Except for Breathing

From Alex: The Fathering of a Preemie

I get up at 4:30 this morning, and now it's almost 8 p.m. My eyes are raw, my head is light, my legs ache, and I think, "I've been a <I>lot<I> more tired than this lately."

It has been five months, and Alex -- my son who was born premature at 21 ounces, my son who won't meet his mother's eyes when she holds him -- is okay except for breathing. He spends his time on a vent of one kind or another, the oxygen pumped into him slowly scarring his lungs, making it tougher for oxygen to be taken into his blood. But he's getting there, I guess. He's been getting there ever since Jill and I stood outside the hospital and said things like, "At least it isn't turning into a hot summer." Now we're still standing outside the hospital, hugging our coats closed while the leaves swirl around our ankles and Alex climbs out of October. He's eating from a bottle again, looking at the ceiling, gaining weight. And yet "you have to be the best person you can be for when he comes home," they're telling us again. They love to tell us things, as our lives are still laid bare under hospital neon. I've lost whole nights of sleep since June.

Other nights have just evaporated. And he isn't even home yet. Parents of healthy full-termers say, "You'll be happy to get six hours when he comes home!" Okay. Just remember there's a world of difference between getting up at 2 a.m. to rock a baby to sleep, and getting up at 2 a.m. to speed him to the ER before his lungs give out. These days, the morning coffee slides uselessly over my tongue. By 9:30 my bones feel like balsa wood. By noon I need aspirin. By afternoon, my head grows heavy and my sight grows weak.

Most nights I leave work at 5 p.m., and catch the subway uptown. Sometimes at the hospital door the security guard still asks to see the plastic ID band that was fastened onto my wrist when Alex was born and rotted off weeks ago. Alex still has a tube up his nose, but the weight is returning to his face and he's taken to bopping his arms to cassettes of Pete Seeger and Chet Baker. He chomps on his pacifier, bouncing his eyes across the ceiling and across Jill's face as she reads him a baby book: "How cute is baby? <I>So<I>cute! How smart is baby? <I>So<I> smart! How sleepy is baby?...

When I rest him on my chest, I close my eyes. I feel his five pounds seven ounces and think, "There is a future here." Who's daddy's little guy? Alex is. To watch him sleep is torture as my head lolls forward. Then I open my eyes and he opens his and seems to ask, "How much longer?" What a cute, smart question! For about 130 nights we've called for Alex's condition before we went to bed. We've asked for the nurse. She – they’re all women – has said "Hi." We've said how are you? She's said fine. There the conversation has often settled until we asked how in hell Alex was doing. I would like to care how the nurse is feeling. But I don't. 

 ....

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”