Sanity's Twilight

To me, my son was a normal kid. Who is to say what constitutes "normal"? I chose to look at my son as an original, just like every other kid on the planet. I think parents get too mired down in what "others" think their kid should be like, and don't spend enough time looking at the beauty that lives within the wonderful, original gift they have in their hands. That is part of the Human Condition, though: We tend to look at the person next to us, compare what we have to what they have, and judge ourselves by their standards. This does our kids a great disservice, and makes us act more harshly with them than we may if we weren't trying to meet the expectations of others. At some point, we parents of more difficult kids have to be true to our ourselves, and being true to ourselves means loving what we have, without condition.

My daughter ate anything we put in front of her. And I mean anything. I tried to be a responsible mother and provide her with good, healthful, nutritious foods. I did nurse her until she weaned herself at ten months. By then she was on table food, and all hope of providing her the same lovingly prepared meals, with all five food groups represented, was gone. My son, as a baby, was carefully given only healthy foods (he didn't even get a cookie until he was two and a half, and it was a sugarless one, at that), and was allowed no candy at all. I would have kept my daughter on that same disciplined diet, but I lacked the time required to prepare the healthy foods I had made for my son. If I had taken the time to make homemade fruit cocktail and turkey burgers, my son would have been out the door and lost in the cornfield across the county road, happily mowing between the stalks for eternity. I felt guilty at first, that my daughter didn't get the same gourmet meals her brother did, but got over it soon enough. She didn't know the difference. She was well-fed, and didn't seem to mind her Poptart breakfasts and fish stick lunches at all. My son would often play with his sister while she sat in her high chair. He would play peek-a-boo with her, or help crumble her food into bite-sized bits. He did this to avoid having to eat any of the food on his own plate. By the time he was three, he had reduced his list of foods he liked to just two - Rice Krispies and raisins, and they had to be eaten together. No other food stood a chance of making it into his mouth. I know this because I attempted to shovel everything in the pantry in there at one time or another. I tried to be sneaky in the presentation of new foods - sneaking apple bits in with the raisins, or mixing wheat germ into the Rice Krispies. He would push the bowl away before trying it, saying it wasn't right. After six months of Rice Krispies and raisins, he moved on to more robust foods, and decided that oatmeal and raisins was what he would consider acceptable. It wasn't just any oatmeal, however, it was a variety called Dinosaur Egg Oatmeal, that had little candied eggs in it that melted when the oatmeal was heated and became marshmallow dinosaurs. Any other kind wouldn't work. I bought this stuff in bulk - with an entire shelf in the walk-in pantry dedicated to this type of oatmeal. Running out was a catastrophic event. The one time I did run out resulted in 3 sheets of sheetrock being replaced and re-painted, a broken aquarium, and four dead fish. It was best to just make sure there was always enough. I still have a box around here somewhere, because, eventually, he switched to chicken nuggets. Not just ANY chicken nuggets - but McDonalds chicken nuggets. I tried to trick him buy saving the containers from Happy Meals at McDonalds and slipping regular chicken nuggets in there, but he knew they were "fake", and wouldn't eat them. I was fortunate enough to be able to stay home with my children during their formative years. This was good, since I had to make three runs to McDonald's daily to ensure my son ate. The biggest problem I had was that McDonald's doesn't serve chicken nuggets before eleven a.m. This meant that by the time lunch was served, my son was hungry, cranky, and not up for any kind of negotiating. It would have been easy to just stop the car, turn around, look at his tense and tear-streaked face, and say "Hey!! I am SICK and TIRED of racing across town to get you these stupid chicken nuggets when there is a TEN POUND bag of them in the freezer at home! Now shut the hell up before I smack you stupid!!!". But, alas, that would have been the easy way out, and, as with all things related to parenting, the easy way out is generally frowned upon by society and social services. I have never hit my child. Nor have I ever told him to "shut the hell up". I suppose that is an accomplishment in itself. But that does not mean that I didn't WANT to do those things. Sometimes, when he was screaming and kicking the back of my seat with such gusto as to puree my internal organs, it took every ounce of physical and emotional strength I could conjure to keep myself from making him stop by brute force. For years, my lower lip had a blood bubble from where I had bitten down on it to keep from doing something I knew I would seriously regret. It also served as a reminder that I was capable of keeping myself under control, and every time I looked at myself in the mirror, and saw that little purple blister, I told myself that it was a battle wound, and that, as the General, I had to keep my troops safe at all costs. I was well-entrenched in sanity's twilight. There is something to be said for surviving the tortured tantrums of a hungry and outraged preschooler while trapped in a line in the drive-through lane at a fast food restaurant - three times a day. The something to be said is that the mother who did that is either nuts or insane. Honestly, by the time the chicken nugget phase ended and the peanut butter and raisins phase began, I was both.

One of the good things that came out of our desperate runs to McDonald's every day was that, impossibly, my daughter got some sleep. As a newborn, she had been unable to lay down to sleep without vomiting or turning blue. Since no doctor would listen to me, I had her sleep in her car seat or swing. But her best sleep came in the car seat. She never lasted past the end of the driveway. She snored so loud I could hear her over my son's contemptuous wails. Sometimes he would throw things at her to show me he meant business about wanting to eat now. She wouldn't even wince. I took to doing a clean sweep of the entire back of the vehicle every evening before going to bed. Nothing harder than a cotton ball could be back there or my daughter would be wearing an impression of it on her forehead.

In November of 2000, when my daughter was seven months old, and still nursing, and my son was three, I made the idiotic decision to go see my family in New York, and I decided to stay for the entire month of November. I decided to drive. And I was driving alone. We did great until day three, when my son decided he was done traveling. This was unfortunate, since we still had two more days to go. I think there are some situations where it is justifiable to drive your car over Niagara Falls. This was one of them. I wisely decided not to stop at Niagara Falls. For one, we were on the Canadian side of Niagara Falls, and after enduring six hundred miles of the most bland, colorless, straight, ribbon of highway I have ever driven, I was more than ready to put the Maple Leaf country behind me. And secondly, I didn't want to tempt myself with the idea of driving over the edge of the falls by actually driving to the edge. I think Canada has a law against billboards, because the only one I saw was a huge LCD reminder to stay to the right when approaching the border, in case customs wanted to search my car. In America, when you are driving for hundreds of miles, singing "ninety-nine bottles of chocolate milk on the wall" while two children screamed in the backseat, you at least have the pleasure of millions of garish advertisements for food,  talk radio stations, heating and air conditioning companies, Powerball, various medical facilities, personal injury attorneys (in case you have a fender bender and need emergency services followed by a lawsuit), and, (and this is the one I most missed while driving through the gray landscape of Canada), beachfront vacation properties. They help pass the time, and give you something to read while you are listening to the "Land Before Sound" soundtrack for the three hundredth time. When I finally arrived back on American Soil, I wasted no time racing toward Buffalo, where we would spend our fourth night. The trouble with traveling across the country with two tiny children and a ten year old atlas in the year 2000 is that there were no smart phones or GPS. If you got lost, you had to do the unthinkable, and stop to ask for directions. I drove around in the dark for what seemed like hours, looking for a hotel, motel, YMCA, homeless shelter, church, or anywhere else that looked like it had room for a distraught mom and her two screaming kids. At two a.m., near full-blown insanity and ready to run my car into the next brick wall I could find, I came across a small motel that looked like something out of a C- horror movie set. A movie with a title like "Attack of the Killer Cimicidae!" I had both kids in the one double bed with me. My son wet the bed during the night. Twice. We were back on the road by six a.m, seeking nourishment and something to wash the film of bed bug excrement off our bodies. It was a three hour drive to Syracuse, where we would stay with my sister before continuing on the three and a half hour journey to my mother's the following day.

I don't remember that night. Or the next six nights. My exhaustion was so complete, I think I may have been legally dead during that time. My next memory after the bed bug haven was staying in my sister's sweltering apartment. Like me, my little sis likes things HOT. Her apartment was no less than eighty-nine degrees. After a joyful visit to my mother's, we headed back to Syracuse, where we stayed for a week, and I noticed my daughter's face getting warmer with each passing day. I dressed her in lighter and lighter clothing, and finally left her in her diaper. But her face remained flushed and hot, her eyes glassy. Then the rash appeared. It looked like measles to my untrained and totally panicked eye. My older sister, who lived just a few miles away and had four medically fragile children who couldn't be exposed to such things as measles, suggested I bring my daughter to the emergency room. It was cold outside, so I bundled my hot little girl up in her snowsuit and hat and covered her in a blanket. I got my son bundled as well, and then stepped outside the apartment to the landing. I don't recall why I stepped outside. I'm sure I had a reason. Whatever the reason, the door shut behind me. My son was standing beside me - he never let me far from his side - but my daughter was still bundled in her carseat inside the boiling apartment. I turned the knob to go back inside, and the door was locked. My sister was working, and I did not have a cell phone. Horror trickled from my scalp to my soles. I pounded on the neighbors' doors until someone answered. I begged them to call the superintendent of the building to come unlock the door, and they went to call him. It seemed like an eternity, and no superintendent. I was in hysterics. The door from outside opened a long while later, and my brother, by a miracle I cannot begin to comprehend, walked into the vestibule and started ascending the stairs. "What's wrong?" he asked in alarm when he saw my tear-streaked face and hysterical gleam in my eyes. "The baby is locked in the apartment with a 105 degree fever and she's all bundled in her carseat and I know she's dead and I can't get to her!" I collapsed in a sobbing heap on the top step, and my son joined me. My brother didn't say another word, but walked back out of the building. I assumed he was going to find the super. Instead, he opened the door to my sister's apartment a few moments later, from the inside. I stared at him in disbelief. "How...how did you....?" I stammered. He shrugged and replied, "I went up the fire escape and opened the kitchen window. Easy."

My daughter had Roseola. I took her back to my mom's and we stayed there for a week, during which time I got the stomach flu. We prepared for Thanksgiving with a houseful of puking people. My son, never one to handle new situations well, was, somehow adapting quite well to the craziness of sleeping in multiple houses, sometimes on beds, sometimes on couches, and sometimes on floors. I was surprised he managed as well as he did. I cannot recall any significant meltdowns. But he had his aunts, an uncle, both grandparents, and myriad cousins there to calm him, to take him to a quiet place when he felt overwhelmed, to keep him occupied, to watch him mow. The only time I clearly remember him exhibiting stress was when he had "mowed" the entire living room carpet at my sister's apartment, and then his cousins walked on it. Otherwise, he did great. I was extremely proud of him. The reality was, at that time, I didn't know he had autism. And although my family recognized he was a little withdrawn, and knew there was something different about him, they loved him absolutely and completely, just the way he was. Frankly, I am glad I didn't know he had autism then, because I probably wouldn't have taken the trip, thinking he wouldn't be able to handle it, and forcing all kinds of limitations on him, as parents often do when they discover their child has an illness. That visit with my family was the last time we were all together. My father has since passed away, and I am grateful he got to spend so much time with my children.

Time passed quickly, and November slipped away. It was time to go home. We almost didn't make it. Going from Michigan to Canada alone with two children prompted no questions. Going from Canada to New York alone with two children prompted no questions. However, going from New York to Canada with TWO parents and two children in the car prompted the Grand Inquisition. Their dad had flown in for the last week to spend Thanksgiving with us and help drive home. When the customs official asked him, he forgot our daughter's date of birth, and looked at me, and then I forgot. Customs officers can frighten such information right out of your skull with a simple stare. I wonder if that is a trick that they teach them in Customs College. They asked us to present the kids' birth certificates. I laughed. I hadn't even thought to bring them. It's CANADA! The border was really just a formality, wasn't it? Didn't Americans have some sort of facilitated entry rights? Apparently, the answer is no. I was glad we didn't offer a bribe, I hear Canadian prisons are horrific. Our Canadian Customs Despot finally allowed us to continue on, but warned us we might not make it back into the country when we went back in through Michigan. I was sure she would call ahead to warn them we were coming and they would detain us for years, forcing us to become Canadian citizens and denying us access to our homeland ever again. I started to cry.
We didn't become Canadians. We all arrived safely at home three days later - funny how much faster such trips go when you have a second driver.

We all survived another Christmas, my daughter's first (awww!), and my son was happy with his new plastic trucks (which immediately became mowers) and the plastic McDonald's drive-through play set Santa brought him, complete with little plastic chicken nuggets, which looked a lot like something you'd find on the bottom of your shoe after a trip to a farm. My daughter ignored her gifts and went straight for the McDonald's play set. She would play with that thing for hours a day for the next four years.

Spring came, along with the fresh smell of newly born grass. My son wasted no time in getting out there to cut it down. During the winter months, his dad would take the snowblower and blow a path around the entire house, right down to the dead grass beneath the snow. He would keep that path clear all winter, and our son would go outside and mow it, his head barely visible above the giant banks of snow towering on either side of him. I wonder what he thought about while moving the dead, ice-covered grass with those massive walls of snow closing in on either side. He seemed oblivious to the idiosyncracy of the scene. But he also seemed content. And for a child who spent so much time in a state of internal turmoil, content was blissful. Spring, however, meant he no longer had to mow at the bottom of the moat. He could now enjoy the birdsong and squirrel chatter, and the whisper of the Spring breezes through the great oak trees that stood sentry at the edge of our property. He could enjoy those things, but somehow, I am doubtful he even heard any of them. He really couldn't hear much, because he was always making a "brrrrrrr" sound with his lips to emulate the sound of a lawn mower. He made that sound all day, and even in his sleep (mowing dream grass). To this day, he has great, full lips, and I feel certain it is because of the years of constant "brrrrrr"ing sounds he made. We take the positive. Every bit we can get. Spring also meant I became more vigilant. My son was not afraid to run out of the house if he heard a lawn mower anywhere. Living very close to a busy county road, he was simply not safe to leave alone for a single moment. Dead bolts were installed at the very top of the doors, as well as the windows. I showered at four am to ensure he was still sleeping while I was unable to keep an eye on him. If he was still asleep when I got out of the shower, I would go back and lay down, the baby monitor turned to high so I could hear every rustle from his room. On more than one occasion, he would disappear while I was pushing his sister in the swing or planting flowers in the garden, and I would find him in a neighbor's garden shed, sitting on their riding mower, his lips making their incessant "Brrrr"ing noise.

One day, his sister took her little wheeled ride-on toy for a spin down the very steep driveway, and did a flip over the fire hydrant at the bottom. Had Olympic judges been present, she would have scored an easy 8.6 (she would have lost points for not sticking the landing, her little body landed spread eagle in the muddy ditch running along the road). She was eleven months old, and I, once again, thought she was dead. I had been standing right beside her, and to this day, I'm not sure how she ended up rolling down the driveway, but life is full of mysteries. I reached her, and poked and prodded her before scooping her up. She had a cut on her eyebrow, but that was it. Otherwise, she seemed fine. I held her close, both of us sobbing, and carried her back up the driveway to the house. It was then I realized my son was gone. I walked around the house, expecting to find him mowing the backyard. He wasn't there. I walked around the other side of the house. He wasn't there either. I checked the neighbor's garden shed, than walked across the street to the neighbors' over there. We were close to our neighbors' up and down the entire street, and he would sometimes wander over to say hi to one of them. But there was no sign of him. I put my daughter in her stroller and, at a fast trot on the jagged gravel, began to canvass the neighborhood for him. We went to the end of the road and turned onto the adjoining circle, and still no sign of him. Our house was across the street from a large, shallow lake. My son was not fond of water, and had never had any interest in going near the lake, but a dagger of fear stabbed my heart as thirty minutes passed and still no sign of him. I stopped in the middle of the road, turning slowly, my eyes frantically looking for any sign of my son's little green and blue coat. The neighborhood we lived in was five miles outside of town. It was really just a collection of houses on two streets, which were connected by a circle. There were only about twenty houses in the entire development. As I stood in the middle of the road, I heard a faint, but familiar sound - "brrrrrrrrrr". I ran towards it, and there he was, walking beside a man who was mowing his lawn with a manual mower. The man looked bemused to have this odd little character mowing along beside him, but he looked downright thrilled when I walked up and told him that little character was my kid, and I was going to take him home now. My son gave no argument, and followed along behind me, walking on the neighbors' lawns, pushing his little plastic lawn mower, "brrrrrrrrrrr"ing all the way.

My son was a habitual runner. The incident in the neighborhood was not the first time he had disappeared. The first time was in the country's largest indoor shopping mall. Four stories of retail indulgence, an indoor theme park, an underground aquarium, and every kind of food imaginable. For some reason, we thought it would be a good idea to take our son there at Christmastime. He was two, and our daughter just a lima bean in my uterus. But lima beans, as it turned out, can be hell on a bladder, and I made frequent trips to the restroom. My son was still in diapers at this point (and would remain so for six more years), and I brought him with me to change him. When he was freshly diapered, I brought him into the stall with me so I could go. As I was sitting on the toilet, relieving my bladder, he scampered under the door and vanished into the mall. Mothers endure a lot of humiliating experiences - breast milk squirting out at inopportune times, a kid filling his diapers in a busy restaurant, a kid telling a complete stranger about your "curly hairs". But running out of a bathroom stall with your pants around your knees must be at the top of the list. I pulled my pants up as I ran, flying through the crowded mall, hoping to catch a glimpse of him. My husband and brother and sister-in-law were in a store near the theme park. We had no cell phones (this was 1999, and cell phones were still the size of a brick and exhorbitantly expensive. Not very practical.). I flagged a security officer, told him what had happened, and he ran off talking into his radio. I raced to where I knew my husband to be, and when I found him, he knew immediately something was wrong. We all ran off in different directions to find him. It took three hours. My son had discovered he thoroughly enjoyed escalators, and had ridden them all the way to the third floor, where he was discovered trying to figure out how to go back down the "up" escalator. When we were finally reunited, and had collected his stroller and diaper bag from the restroom where I had left it (miraculously, nothing had been stolen. I had even left my purse under the stroller, but no one touched it), we went straight to a store and bought him a leash. Within five minutes, a woman came up to me and told me how awful it was that I had my child on a leash, and I, smiling as I zipped and snapped my pants, said, "yes, it's ludicrous, isn't it? Merry Christmas."

But the worst one of all had to be "The Clinic Incident". It was a Wednesday in February, 2001. I had taken my daughter in for a checkup. It was a cold day and, as we were leaving, I asked my son to stay put while I put his sister's hat on. I turned to put the hat on and when I turned back around, he was gone. The clinic was attached to the hospital, and he could have gone anywhere. I asked the women at the information desk if they had seen him. They hadn't, but they offered to help find him. One of them went into the hospital, the other into the clinic. No one had seen him. I felt the cold, familiar feeling of panic welling up inside me. A Code Pink was called, and the police. In a Code Pink, no one is allowed in or out of the facility until the missing person is found. A bus waiting to take seniors back to the nursing home was sitting outside the front doors. It was running. I felt bad that my son was preventing people from getting back to their warm beds and comfortable easy chairs in the nursing home. Maybe some of them were missing their favorite television programs. It seemed that my son caused a lot of trouble for a lot of people, and I couldn't help feeling guilty about it. The police told me to stay by the doors in case he turned up there looking for me. The day faded, and dusk descended. The wind picked up. The sky darkened. It would snow that night. I tried not to cry, but worst-case scenarios began creeping into my mind - did someone grab him while I was putting on my daughter's hat? Did he get stolen right out from under my nose? Is he being tortured? Is he stuck somewhere? Did he fall down the elevator shaft? I wanted to vomit. I wanted to scream. I wanted my son back, right now! As the last of the light disappeared, a police officer entered the building, and, walking beside him, his tiny, frozen hand encased in the officer's huge, warm one, was my son. I broke down, sobbing as I folded him in my arms. "Mommy! I played hide and seek! He finded me!" I thought about this for a second before looking at the officer and asking him where he found him. What the officer told me sent a shiver down my spine that, to this day, has not fully warmed. "He was hiding in the wheel well of that nursing home bus sitting out there. If the bus had left, this little guy would have been run over."

Somehow, he survived his early childhood. We all did. I didn't feel too bad that I couldn't manage to teach my son the importance of not running off. His preschool couldn't keep him in the classroom either, and they had a roomful of trained teachers on hand to keep an eye on him. But I was always grateful when we arrived at the end of another day intact. Many nights, after stories were read, bed and closet were checked for monsters, window bolts were checked, and shades were pulled, I would sit on the edge of my son's bed and watch him as he drifted off to sleep. He would lay on his back, with a favorite stuffed animal under each arm, his little fingers rubbing the tags on the backs of the stuffed animals. He had done this since he was a baby. I had conducted countless surgeries on these animals, carefully sewing the tags back in place, the words long ago rubbed off by his chubby little fingers as he slipped into a thousand slumbers. As I sat there on the edge of his bed, the soft glow of the nightlight giving his face an angelic radiance, listening to his soft breathing, his little chest rising and falling with each breath, warmly encased in his penguin footed jammies, I realized just how perfect he was. And I would sit and gaze at him tenderly, watching for unknown threats, protecting him, even as he drifted into gentle slumber, dreaming of mowing endless fields of fragrant grass.

Soup Crackers and Warts

I have come to the conclusion that the secret to getting through life alive is really nothing more than learning how to wrap dire situations in a cloak of humor.  Life is constantly grabbing us from all sides and pulling. Eventually, you either let the steam escape or you explode. Back in the old days, before my son’s third birthday, I was a rather serious person. I ate my soup with soup crackers, and drank my tea with lemon, and paced my miniscule living room while watching the news, occasionally stopping to yell at the newcasters flashing their blindingly white smiles at me from the TV. All I needed was five cats to complete the crazy cat lady persona. But…I was married then, and the mother to a beautiful baby boy. He softened my hardened edges, melted away my cynicism, and helped me see that the world is truly a wondrous place. I reveled in his excitement at discovering the lint trap in the dryer, and how much fun a roll of toilet paper can be, and how long a trail of toothpaste one tube of Crest will make through a house. I learned to appreciate that, even though having vomit dripping from my hair was rather nauseating,  I cherished being able to be there for him when he was sick. I discovered that when the drug store is out of nursing pads, maxi pads would work just fine to stem the flow of milk darkening the front of my blouse, and that it was rather fun to embarrass the poor teenaged kid by asking him if he could check for nursing pads in the stockroom, his eyes looking everywhere but the spreading trails running down my shirt. These were the tiny sparks of humor that lit the dried kindling of my brain. When my son turned three, I would find it necessary to fan those flames daily just to keep myself going.

He seemed like a perfectly normal baby. I suppose he was. He met all his infant milestones. He started talking when he was fifteen months, singing Kid Rock at two years, and revealed his rather impressive hip hop dance moves at age twenty-six months (I know this because I have him on video. I’m saving this video to use as a blackmail tool when he starts sneaking out to parties). He loved lawn mowers. He was my first child, how was I to know it wasn’t typical for a three year old child to sneak out of the house at six a.m. to go three blocks over to mow the neighbor's lawn with his little plastic mower? To me, this was just part of the terrible three’s. I started to ask myself if things weren’t a little out of hand, however, when he unbuckled himself from his car seat to try to jump out of the car so he could watch the State Highway Department mow the grass in the median. I was thankful for child safety locks, since I was driving seventy miles per hour on the interstate at the time. To ensure his safety, I had to pull off on the shoulder and tell him if he wanted to watch them, he had to be buckled in his seat and I would stay there so he could watch. He helped me buckle him back in. He mowed the carpets at home with his John Deere 1/18 scale riding lawn mower. He made a brrrrr’ing noise with his lips for hours on end, as he mowed the “grass” into neat lines. This was fine with me, since I now had a newborn daughter to care for and it did keep him busy for hours. The problem came when I needed to use the bathroom, as he would not allow anyone to walk on his lines and the lines went all the way down the hallway, which is where the only bathroom in the house was located. I learned to play a delicate balancing act between drinking enough to keep my milk supply up, but not so much that my bladder would fill, because those little cast iron lawn mowers create a mighty bump when they hit you in the head. At age 3 and a half, he became a dinosaur. I didn’t think it possible for a child who was barely tall enough to clear the top of the dining room table to become a giant, ferocious, man-eating lizard, but you’d be surprised what a little kid can turn into. The bite wounds on my legs and arms healed nicely, with minimal scarring.

 By the middle of his third year, I had enrolled him in preschool. This is when I discovered my kid was a little “different” than all the others. Mine was the only one grabbing my ankle and screaming “MOMMY!!! YOU CAN’T LEAVE ME HERE!!!!” when I tried to leave the room for the parent session upstairs. He was also the only kid who threatened to rip out the other kids’ intestines when they would try to play with the toy dinosaurs with him. And the only one who would spin in circles and flap his hands singing “tweet tweet, birdy birdy, tweet tweet” during story time, which involved a story that had nothing to do with birds. And the only one who snuck out of the room to go find the toy dinosaurs when the teachers decided to circulate them out of the toy selection for a few weeks. I was called down to the classroom to help locate my son, who seemed to have disappeared. Panic welling up inside me, I raced down the stairs with my tiny daughter grasped in my arms, praying he hadn’t been kidnapped by some evil lurker who would do unthinkable things to my baby boy. I asked them where the toy dinosaurs were – knowing he would never walk out of the room with that big box of plastic T-Rex’s, Apatasauruses, Pachycepholasauruses, and Velociraptors at his disposal. When they told me what they had done, I knew where my son was. We opened the door to the storage room, and there he was, sitting in the dark, surrounded by his dinosaur friends. He looked up as we entered and said with a grin “Hi Mommy! I found dem!”  He sounded like a German elf. It was time to go home, and I knew they would not take him back. He was enrolled in a special preschool for children with autism, and the school arranged to have him picked up by the cute little bus at home each day, after enduring the heartwrenching screams of terror every time I tried to drop him off and leave for the first week of school. It wasn’t really to help my son, but more to prevent all the other high-strung kids in that room from having to deal with the stress of my son’s separation anxiety. It worked for me. It’s hard to leave your kid when he’s screaming for you like he’s afraid you will never return. And it was nice to not have to go out in the breathtaking, frigid winter air to bring him to school. Yeah, I know he had to endure the cold, but he was a little kid. They don't care about stuff like cold. I had him bundled up from head to toe, anyway. He looked like a giant slug, wound in thirteen pounds of wool, and waddling down the steep driveway to the bus. 

Things were good for awhile. He seemed to adapt to his new schedule, learned to use a storyboard to handle day to day transitions, and I enjoyed the three hours of free time to devote to my daughter, who really seemed to get the shaft when it came to one-on-one time with me. It isn’t until you have a child who requires every second of your time and energy that you can begin to understand the toll it takes on any other children in the house. Despite it all, she was a happy, giggly, active little girl, and didn’t seem any the worse for wear from her brother’s frequent tantrums, myriad fears, and severe separation anxiety. Perhaps being born second made her immune to his behaviors. She just didn’t know anything else. I was very fortunate to be able to stay home with my children when they were little. I don’t know what I would have done had I had to hold down a job and manage all of this.

Kindergarten was fun. The tall, bald principal, who I always called Kojak, called me at least twice a week to come pick up my son. Usually because my sweet little boy was running through the halls screaming at the top of his lungs, but sometimes because he would run out of the school and into the parking lot. My answer to his request was always the same “Ho ho!! No way! I jump up and down and clap when the bus comes to pick him up every morning, and there’s no way in hell I’m going to come get him and give up two whole hours of peace and serenity. You run a school, surely you have some glue there – glue him to his chair and give him some toy dinosaurs to play with. I’ll be here when he gets off the bus AFTER school!” I don’t blame the school for wanting to send him home. When he acted up at home, I couldn’t wait to send him to school. I got calls at home because teachers were bitten - “Do you know if he has any contagious illnesses?” to which I normally answered “Yes”. There was always a long pause after that, and then I’d simply say “he has Rabid Child Disorder. There is no cure”. I got calls at home because he spit on other students – “do you know if he has any contagious illnesses?” to which I normally answered “just the same one I told you about last week. I’m sure it’s written in his file somewhere”. I got calls at home because he kicked teachers, threw his chair, ripped his papers, and peed on the floor of the classroom. Every time, my answer was firm – he is not coming home. I NEEDED those four hours every weekday. I needed them, my daughter needed them, my neighbors needed them. I would die for my son, but I would have killed him if I didn’t get that daily break. These kids are not easy to love, nor easy to parent. But if an entire school full of trained professionals couldn’t handle my undersized little six year old, what the hell did they expect me, a common mother with no special skills or training, to do about it? It was agreed that he would be transferred to the autism program at a different school for first grade. Why he wasn’t put in that program for kindergarten still confounds me, but I was grateful he was going to be in a setting that was appropriate for him.

For half a school year, things were almost NORMAL. I felt like a typical mom (except for the deadbolts at the very top of the doors and windows to keep him from running out at night, the four am showers so I would get one before he woke up drenched and wouldn’t go back to sleep, the bloody noses from him punching or kicking if I took away a toy or put him in timeout. But these things were minor and manageable in the course of a day). I could not leave him alone with himself or his sister for even one second. My daughter was in the bathroom with me whenever I was in there, just so I knew she was safe. When the train went by, five miles away, he became so frightened by the distant whistle that we would have to crouch in his closet until it was long past. Nothing consoled him from the lonesome gasp of that whistle. It terrified him for reasons beyond my comprehension.

I was alone. My son was born in North Carolina, but we moved to Minnesota just before his sister was born. I knew nobody. There was no support network, no backup, no one to call and say “can you come over for a cup of coffee and a gab session? I need some grown up time”. I learned that friendship could come in strange forms. The characters in the Land Before Time movies became important to me, as did those in the movie Lion King. See, those characters didn't care that my kid was different. But the moms at the preschool didn't want anything to do with me. I was the mother of that "crazy kid". They gave me wide berth when I came to the school. The moms of the kids at the autism school couldn't come over because our kids would kill each other if they did, and it isn't like we could hire babysitters. That was a laughable concept. I could have become a raging drunk. I’m still thinking about that option, but I’d have to actually drink, and that’s a bit of a dealbreaker for me. I could have become an abusive monster, and there were times I considered that option, too. It would have been so easy to just smack him into next Sunday and hope when Sunday came around that he was normal. But beating a child never results in positive change in the child, and it seems to foster more anger and desperation in the parent. My own mother never did seem to be able to stop herself when she went on a spanking tirade. It is loss of control. As the adult, I had to maintain my composure at all times. But, I do have to wonder what a social worker would have done to him if he’d kicked her square in the face in the middle of a grocery store and started screaming bloody murder as her face exploded in a bloody torrent. Yeah, that happened to me. I had my infant daughter in the basket in her car seat, and I had to wrangle his writhing little body into the front seat of the buggy as he continued raining punches and kicks down on my face and head. I had an audience. My fifteen minutes of fame, and I looked like I had just finished a UFC match. I waited for someone to call the police, hoping and praying someone would so they would take him away for an hour. Maybe he’d be calm when I got him back. But no one did. There were a number of very helpful ladies there, however, who were more than happy to tell me that my son was “going to get hurt” if I didn’t manage to get him secured in the buggy. Really???? I wonder if they went to Harvard to get that level of smarts. No one offered to assist me in getting him into the buggy and safely secured. No one offered to ensure the baby in the basket was safe. No one did anything but offer ridiculously stupid advice that I should do something I was already CLEARLY trying to accomplish. After awhile, I put my son down on the floor, and let him lay there screaming. I didn’t care that people were staring. I didn’t care that my blood was forming a puddle at my feet. I didn’t care that my daughter was screaming in the basket. I just stood there and stared at my son and waited for him to calm down. When the manager said I needed to take him out, I told him that he was welcome to carry him to my car for me, but that I was not picking him back up until he was calm. The manager walked away.

Life with an autistic child is hard. Life with an autistic child who also has some other, underlying issues that are lurking beneath the surface is harder still. He had moments of clarity, when he was funny, and sweet, and played peek-a-boo with his sister and hide-and-seek with me. But the sinister blackness was always there, writhing just beneath the surface. Hide-and-seek was always interesting. He told me where to hide - always in the same place – a space between the refrigerator and the cabinets. It was a large space, large enough for me to stand against the wall comfortably.  He would take my finger and pull me into the kitchen and say, “Mommy, you hide there”. I sometimes considered teaching him the “pull my finger” joke, but knew he would probably try it on everyone, and didn’t want to deal with more stares in public than I already endured. After he placed me in my hiding spot, he would go count, and I would stand where I was instructed. When he was done counting, I’d hear his little feet padding through the kitchen, and he’d come around the corner and see me standing exactly where he told me to stand, and he would scream in terror. It happened every time. And every time I laughed. How could he be terrified to find me in the very place he told me to hide? But he loved the game, despite his inability to suppress his fear of surprises. I wonder if his terror stemmed, not from finding me where he knew I would be, but from the fear that I would NOT be there when he came around the corner. Once, I made the mistake of hiding somewhere else. It scared him so badly that he missed two days of school, unable to function, unable to let go of me. I felt terrible, and never did it again. But the terror returned every time he found me where I was supposed to be, standing there with a smile on my face and my arms wide open, ready to wrap him up in them – but he would rarely allow me to hug him. The closest thing he would tolerate was to wrap his fingers around my index finger and hold tightly. I felt those finger hugs through my entire being, and my heart swelled every time he gave me one. I cherished the shreds of normalcy, even when I had to re-define normalcy to fit my circumstances.

My son’s sense of humor was very dry, probably because he had no idea he was being funny, but I thought he was hysterical. He once poked a large woman in the rear end and said “you have a very large fanny”. She did, so I didn’t really consider his statement to be anything other than rude. She was kind about it, and merely smiled and said “is he getting fresh with me?” I replied that he likes older women. 

He went up to a very old man in the grocery store once, and proceeded to tell the old man that his wrinkly face meant he was going to die soon. The man looked at me, and I told him I should probably go find that obnoxious kid’s mother.

 He would bite every tomato in the vegetable bin at the grocery store, then put them back. He loved to lick avocados. At first I would put them in the buggy to purchase, but I don’t cook with tomatoes much and have no idea what to do with an avocado, so after awhile, I just put them back and hurried him to another aisle. I know to wash my fruits and veggies very well after I buy them. I ‘m sure my kid isn’t the only produce-licker out there.

A lot of years have passed since those early, difficult days. The days are not easy now. But they are difficult for different reasons. Adolescence brings its own brand of desperation. Heap schoolwork on top of hormones on top of anxiety on top of obsessive compulsive disorder, and you have a recipe for General Tsao’s Chicken mixed with Butterscotch pudding. It doesn’t go together well and really, in the end, it just makes everybody sick.

I don’t eat my soup with soup crackers anymore. I eat it with melted soy cheese on toast, because I have become rebellious, and daring, and confident in my choices. I prefer a lime in my tea, and I no longer watch the news, because the internet keeps me well-apprised of the insanity occurring around the world. Besides, I have enough headline-worthy news occurring right in my own house these days. When I look at the funny, hilarious, hysterical, unpredictable life I lead, I find myself thinking…”I could have been given a perfectly normal, sports-loving, obedient, compliant, outgoing, everybody-loves-him kid, but then I wouldn’t have had the chance to get to know this enigmatic, funny, interesting, smart, confusing, frustrating, miraculous, shy, obnoxious, witty, musical genius I was given. And I know I would have felt a hole there, where he should be. Because I was MEANT to be his mother. He was given to me as a gift, a precious gift more valuable than all the riches on Earth. And regardless what happens to him in his future, I will fight for him every single day of my life. Because he is mine. And I am his. Warts and all.”