A Day in the Life Raising Two Autistic SonsJeni Decker
I straddle my son, holding his wrists down, hoping he’ll calm down enough so that I can get off him. I need an ibuprofen. He’s in the middle of one of his tantrums, and he’s all over the place – one moment kicking me in the stomach, the next moment patting me on the head.
“You okay, Mom? S’okay.”
I love you, I hate you, I love you, I hate you. I then take a head-butt to the nose, and it’s lights out for a few seconds. Tiny white specs flood my field of vision, and I crumple to the floor with Jaxson still clinging to me. I start sobbing and don’t stop for a good half hour.
I stare at my reflection in the shards of broken Christmas bulbs next to me – the blank look I see refracted back is disturbing. I’ve disappeared into myself like a snail pulling back into its protective shell.
So that’s what post-traumatic stress looks like.
This is me, Jeni: I’m five-foot nuthin’, one hundred and . . . ahem pounds – a roly-poly, forty-something, Rubenesque bon-bon of a gal, often described as cute but never sexy. I have two autistic children, an Australian shepherd named Sugar, and an albino frog named Humbert Humbert.
I’ve also got a husband, but he’s sort of a bit player in the melodrama that is my life. The frog gets more screen time than he does, mostly because the frog is physically present in the house more than my husband. The frog can’t escape. The husband can.
We moved from Florida to Michigan in 2007 (from a small neighborhood to a fifty-acre farm) because my mother had recently bought property and offered to help us build a home. She knew I needed help – I had a nine-year-old with severe OCD and major socialization issues, a five-year-old who was barely verbal, physically aggressive, and not anywhere near being toilet-trained, and a husband who was having a difficult time dealing with his two disabled children.
The only tool I had at my disposal was a prescription for an antidepressant.
What I had, essentially, was a mess.
Now it’s Christmas Eve, 2008 – the year was coming to an end, not unlike my sanity.
My husband had gone out for a bit of last minute holiday shopping, leaving me with twelve-year-old Jake to obsessively pummel me with random questions, while eight-year-old Jaxson did the same with his fists.
I was praying Santa would drop by early to deliver some sort of legal pharmaceutical magic I could sprinkle over Jaxson to knock him out for an hour – or five.
He ran around the room yanking pictures off the walls, knocking over tables and chairs, screaming at the top of his lungs, and clawing at me whenever I came near him.
Christmas break sucks. Take my kids off their schedules, even if part of that schedule includes school – which they both hate – and things begin to deteriorate fairly quickly.
Jaxson wanted to go outside and play in the snow. I was preparing for Mom and Bob to arrive for dinner and trying to clean the house. During the four hours that my husband disappeared to “shop,” I had to employ the kind of physical prowess only high school wrestlers are familiar with.
After he tossed a picture from the wall at me, I lunged at Jaxson, straddling his waist. I held both of his wrists to the carpet and waited out his flailing and kicking until he became tired enough that I could safely get off him. Then he cried and took to my bedroom, hiding under the covers on my bed. I left him in my room but brought a heavy dose of guilt with me as I hurried to clean the toilets and make a salad.
After I washed my hands, of course.
Jake, the Official Hygiene Ambassador, was keeping an eye on me in that regard, all while following me around the house, tossing questions at me like live grenades.
“I just need some proof, Mom. I need some straight answers. So I’m gonna leave cookies out for Santa, and if he’s not real, the cookies won’t be eaten, right?” We’d already had the talk but Jake was still grasping at the magical thinking we’re all guilty of when we don’t like the answer reality provides.
“Okay, then. Hand me that spray bleach.” He passed me the cleaner.
“You won’t eat them, right?” I wiped the hair from my eyes with the side of my forearm, making sure to keep my chemically dirty hands away from my face.
“What are you looking for here, honey? The truth, or something that will make you feel better?”
Jake eyed me suspiciously, and then headed for his room. “Never mind. I don’t want to talk about it. Just don’t eat the cookies.”
I got a five-minute respite wherein all I had to deal with was the cleanliness of the toilet. Then Jaxson had re-entered the scene, threw himself on the floor beneath me, and began to scream as I cleaned the bathroom. I ignored him, scrub, scrub, scrubbing Christmas Eve into oblivion.
Jingle Bells, Jingle Bells : I hummed with alarming ferocity, hoping it would drown out the little guy wailing at the top of his lungs.
It was not long before Jake returned with more questions, yelling over his still screaming brother.
“Can someone choke themselves with their bare hands?” Jake had both hands wrapped tightly around his throat, his face becoming redder by the second.
“I don’t know. Give it a go, and let me know how it turns out.” Scrub, scrub, flush. Clean toilet: Check. Jake trusts no one. The entire world and its contents are conspiring to make his life miserable or cause him physical harm. “What about a fork? Is it possible to swallow a fork?” Jake yelled over his brother, who was now pounding the nearby wall with his little feet. “I’m pretty sure you can’t swallow a fork,” I screamed, stepping over Jaxson. I headed for the other bathroom with Jake following me.
It took Jaxson a minute to realize he wasn’t center stage. Once he did, he got up, found us in the other bathroom, and threw himself another tot-sized tantrum.
“I so mad!” Jaxson announced, climbing into the empty bathtub.
“If I create my virtual world, jump into the TV, and start playing with Mario, what happens if the electricity goes out? Will I be stuck in the virtual world, forever?” Jake leaned his head against the door frame as I bent over my second commode of the day, trying not to pass out from the noxious chemical fumes.
Jake’s newest brainchild was some sort of virtual world he thought he could persuade the scientific community to invent. He’d recently made me send out a mass email with the following:
Dear Computer Geniuses and Scientists, I want a world called the virtual world. You put on a helmet and I want it to be the realest graphics you can make. It can link to any game system and when it accidentally turns off, you can still take off the helmet. And make a screen so people outside the virtual world can watch you. Sincerely, Jake PS – Make it very realistic
Of course, this email never got sent. I’d typed the letter, added the entire contents of my address book to the Send To column as Jake hovered over my shoulder, and then pretended to click send when he went to the kitchen for a soda.
Jake stared at me as I scoured the toilet bowl, patiently awaiting a response.
“I can only say that if you invent this virtual world, that’s something you might need to look into.”
Lately Jake had been obsessing more and more. I began to wonder if a trip to the pediatrician to check into some sort of medication might be in order. He couldn’t even go a few minutes without bombarding me with a plethora of questions, one right after the other, faster than I was able to answer. It was starting to interfere with his daily life.
Not to mention mine.
It was like how I imagined a stun gun attack would feel: Zap! – a moment of disorientation followed by a slow recovery. Only in this scenario, I’d be zapped again as soon as my eyes stopped rolling back in my head.
“Mom, I hate school. I wish they would just send me to juvie.”
Bang, bang, bang! Jaxson kicked the side of the tub, tossing shampoo bottles overboard.
“No you don’t. People would touch all your stuff, you wouldn’t have wipies to clean your butt with, and you’d have to sleep alone. You wouldn’t do well in juvie, Jake.”
Yank! Down went the basket of towels. When Jax saw my expression, he flew out of the tub and exited the bathroom, leaving a trail of knocked-over items in his wake.
“Mom?” Jake began, tentatively.
“What, honey?” I continued to ignore Jaxson, trying to give Jake my full attention – well, him and the area behind the toilet bowl that rarely got any attention of its own.
“Fear is an emotion God shouldn’t have given us. Because we still have common sense.”
I didn’t realize the profundity of this statement until I’d thought about it for a minute. “That’s very smart, Jake.”
“Maybe I could build a machine that would take away fear. After I get my virtual world helmet made.”
Crash! Something that sounded suspiciously like glass fell in the other room.
“Uh, huh . . . ” You get right on that. “Interesting idea, honey.”
Realizing the bathroom was as clean as it was going to get, I headed off to find out what was broken in the other room, hoping Jax didn’t need stitches.
“Mom, who is more irritating, me or Jaxson?”
I stood over a broken Christmas bulb on the kitchen floor. “You both have your moments.”
“What do I do that’s as bad as his fits?”
Jake held the dustpan for me and I swept up the mess as Jaxson watched from across the room. I looked up at him, pointed my finger and said, “Bad boy,” before jumping back into the interrogation with my elder son.
“You ask lots of questions. Questions, questions, questions. Questions are good, but sometimes when they’re coming as fast and furious as you ask them – ”
“No bad boy. No!” Jaxson screamed, and again ran to hide under the covers on my bed.
” – it feels just like getting hit with one of your brother’s little fists. Or a stun gun.” I took a deep breath and exhaled, trying not to cry.
“I guess God just made me more curious than normal people. I’m bi-curious.”
I smiled. “Where did you hear that word?” “On TV somewhere,” Jake picked up a few stray shards of red glass. At last, finally I got everything done that needed to be done and was finally able to sit in the rocking chair with Jaxson and make nice. Usually, when he realizes he isn’t going to get his way, there is a hurricane of dysfunctional behavior followed by a self-imposed time out, then him hugging me and crying, eventually leading to, “Better, Ruby?”
He calls me Ruby and I call him Max, something that started when I began mimicking the voice of the cartoon character on Max & Ruby, one of his favorite shows.
“Yes, Max. All better,” I squeaked in my cartoon voice.
“Good job, Ruby.” Jaxson smiled and used his little fingers to push the downturned corners of my mouth up into a smile.
I wanted to scream, was seconds away from sobbing violently, but I’d just told him it was all better so I needed him to see on my face that it was. Autistic people often have a problem matching a facial expression with a corresponding emotion. All through elementary school, Jake regularly had to consult the Chart of Expressions on his special needs classroom wall in order to know what someone he was talking to might be feeling inside.
On this Christmas Eve, if my emotional state had been portrayed on the Chart of Expressions, it would have included two slits for eyes, a large O for a mouth, and a dialogue bubble that said: “Somebody kill me before this gets any worse!”
When their father finally returned home, Jaxson was gearing up for another fit. I heard my husband mumble under his breath, “I can’t wait until this is all over.”
This was him presumably referring to Christmas and all of the extra time and effort the holiday preparations necessitated. Unfortunately, Jake heard every word.
Are you kidding me?
I’ll admit there were a few dangerous seconds when, if my actions had reflected my internal emotions, I’d now be incarcerated for first-degree murder and my children would be permanent wards of the state. It was during those few dangerous seconds that I fully grasped what the word snap means with regard to what people do in a blinding instant of rage.
The better parent in me waited until Jake had called his father rude and wandered off to his bedroom.
Then, I responded. Quietly, and not without a hint of vitriol. “Let me tell you something, Mister. Until you’ve taken two kicks to the kidney and an almost debilitating head-butt to the nose, accompanied by enough close-fisted punches to cause the ugly bruise that’s certain to be on my shoulder tomorrow, I’m going to need you to shut your mouth!” I kept my hissing to a volume only he could hear. “While you were battling last minute shoppers, I cleaned two bathrooms, vacuumed four rooms, cleaned one kitchen, made a salad and still managed to deal with the little prizefighter over there, who is now dry humping his Christmas stocking!”
My husband was having “issues” coming to terms with his children’s autism. Recently he’d said to me, “Well I’d take them out, but they don’t like doing anything.”
My response wasn’t exactly full of Christmas cheer. “Correction. They don’t like doing anything you like. How about doing something they like? Jax loves playing on the swings. Jake wants to make things in the shed. You will never turn them into the little men you dreamed they’d be, so how about realizing they’re perfect little men just as they are? I’m not sure who it was that told you hanging out with kids is always fun.
Because I don’t particularly like telling Jake his Mad Guy/Sad Guy story every night, or repeatedly casting the fishing rod for Jax so he can hold the end while I reel it in. Do you think I like spending hours of my life doing these repetitive, painfully boring things? No. But I do them because they like it. I do it for them, not for me. If you think for one minute I wouldn’t prefer getting a pedicure or spending a little time alone at the library, you’re mistaken, buddy. I’d settle for a nap. I don’t think I’ve taken one in twelve years.”
I could almost hear the Christmas version of my angst set to musical accompaniment as my chagrined husband sulked off to take a shower.
Six veggies cut up . . . Five tantrums quelled . . . Four Xanax downed . . . Three bedrooms cleaned . . . Two bleached-out johns . . . And a sparkling kitchen sink!
On some days I wonder just how harshly I’d be judged if I disappeared suddenly, changed my name, and never returned. Obviously I know the answer to this question. There would be judgment and it would be deserved. You don’t just cut and run on your kids – not unless you’re a complete and utter douchebag. Couple that with the fact that even though I’m not a practicing Catholic, the nuns at St. Charles Catholic School did enough damage to tattoo the religious taint of guilt on my soul forever.
Christmas Eve went fairly smoothly after that. Mom and Bob arrived for dinner, presents were revealed, the questions stopped, and there were no more tantrums.
Just before bedtime – when he’d close his eyes, lay his head on the bed next to his brother, and dream of sugarplums and all that jazz – Jake entered the living room to find me staring at the television in an almost vegetative state, watching The Nightmare Before Christmas.
He offered an epiphany: “I think I need to forget about the swallowing the fork thing, Mom. If I don’t quit thinking about it, I’ll never make it in this life.”
Damn, that kid is smart.
“Night, Jake.” “Night, Mom.” Merry Christmas.
Essay reprinted from the book I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jeni Decker. Copyright 2012. Published by Skyhorse Publishing, Inc.