Monday, August 9, 2010

Man Overboard!

It was October. The male worker had gone back to his real job as a Behaviour Interventionist. The 'volunteer' employment agency had offered us another worker but we decided against it. We certainly didn't feel it was worth the money and we had too many disagreements about how much we were paying in mileage and travel time. A third of our costs went to administrative expenses and not therapy time. The female worker had gone off to get married and never called again. I was relieved I hadn't had to tell her we didn't want her to come back but felt a little unsettled she had given such little thought to her commitment. We didn't have a nanny anymore and the daycare wasn't ready yet. It was just me and my kids at home, everyday.

The daylight hours were getting shorter but my days felt even longer. I kept up with therapy but it was difficult to devote my whole attention to programming when I had a toddler wandering around as well. Our daughter was so quiet that I would often lose her in the house. It wasn't like we lived in a mansion but she wouldn't come or verbally respond when I called her name. I would have to go looking for her, only to find her sitting quietly in a corner chewing on a book spine. Sometimes I would find her laying face down behind the sofa, running her fingers over the floor grate. I thought she was just bored and was grateful she was so easily entertained. I always knew where our son was though; I just had to follow the sounds of crashes and screams. Neither child napped any more and our son was still waking up most nights and running the halls screaming. My stamina was further eroded because many routine activities had become laborious chores.

Our son was bothered by his new Fall wardrobe of long sleeve shirts and pants and was constantly trying to raise his sleeves and pull up his pant legs. He resisted getting dressed in the morning and putting on the warmer pajamas at bed time. He didn't seem to be able to transition to the new clothing at all. In the end I had to hide all his summer clothes. He could not dress or undress himself but he would empty his dresser of all his preferred clothing, throwing handfuls at me and screaming. When I removed all the shorts and t-shirts from his drawers, he stopped looking for them and merely tantrummed by throwing himself on the floor. It was a fight every morning to get these new clothes on him but once they were on he couldn't get them off again. I was thankful for this particular developmental delay. Slowly, the tantrums subsided but it took several weeks before he completely adjusted.

As well, he was having a great deal of difficulty with bowel movements. Upon recommendation from the pediatrician we had started giving him liquid vitamin supplements (TriViSol and Fer-In-Sol) but it had made him severely constipated. Between formula, milk, Pediasure and cheese, his body just couldn't process the extra iron intake. He developed a fissure (a tear in his anus) which made him more resistant to pooping since it was now physically painful to do so. We stopped the vitamin supplements and hoped that the Pediasure, milk and formula mixture had enough vitamins for his growing needs. His stool softened considerably and lightened in colour, a sure sign that there had been a significant decrease in iron intake. However, he had now developed the habit of with-holding. When a child has had painful eliminations in the past, they will try to hold in their bowel movements by stiffening their backs and clenching their buttocks, sitting on their heels or other strange postures. This with-holding then creates a mass of hardened stool at the end of their colon that has the same effect as a rock in a garden hose. The stool behind this obstruction liquefies and trickles out, the child being unable to hold in the seepage. This whole mess is called encopresis and is just as common in typical kids as autistic ones. The idea that our son's new problem was not unique to autism was no comfort at all. The leaking fecal matter meant that he had near-constant brown puddles in his diaper and he smelled like an outhouse most of the time. The stench was stomach-turning and he was in obvious discomfort from the irritation the liquid caused the fissure. We used child-sized glycerin suppositories to loosen the stool ball but it was a wrestling match requiring two adults. It terrified our son when my husband held him down while I had the inglorious job of insertion. We did this for several days but with very little success. We were warned against using laxatives of any kind as this can cause further damage to the bowels of a young child. Finally a pharmacist recommended an over-the-counter product called Agarol which is made from mineral oil. I called the pediatrician who then called the dietitian and together they decided this was safe for long term use. Agarol looks, smells and tastes like a melted McDonald's vanilla milkshake. In order to get our son to take it we had to put it in a syringe and force-feed it to him. He still would not eat anything off a spoon. After three days, the stool blockage passed. We continued with the daily dose of Agarol to guard against re-occurrence. Since the taste was so similar to his Pediasure, our son eventually learned to accept it without resistance. Still, our son would continue to have intermittent problems with bowel movements for years. I now had a new worry: had we irrevocably damaged his bowels with our administration of the vitamins? These liquid vitamins were a common prescription for young children with dietary concerns but I decided I would never again give him any medications or supplements that were not truly required. Unless it was for a life-threatening illness or infection, my son would remain drug-free.

Not surprisingly, our son developed an aversion to baths. He refused to sit in the tub and would scream when we washed him or poured water over his head. We could no longer bathe him with his sister because he would attack her in the tub while she sat quietly in her bath ring. It was such a traumatic event that I took to bathing him in the middle of the day so it wouldn't jeopardize bedtime. By the time his bath was finished, I would be soaking wet as well. He would knock the cup out of my hand, splash the water out of the tub and climb out several times. I would have to hold him with one hand while washing or rinsing him with the other. He needed a bath everyday due to the encopresis and I hoped his resistance would weaken. It would take several months before he stopped protesting, probably around the time the fissure finally healed.

I tried to take the kids for walks but they would not hold my hands or keep the pace. They would scamper away in opposite directions, my daughter stooping to pick up objects to chew on and my son running full speed toward the intersection. I tried using the double stroller but they sat too close to each other, constantly hitting or biting. I tried using a double wagon but both would stand up and fall out as I pulled it along. Going to the park was out of the question. It was open on all four sides, bordered by roads. The potential for disaster was just too great.

My days had now become a mixture of physical confrontations with my son and searches for my daughter. I relied on the television to keep them both entertained during down time. I still needed to do the laundry, prepare their meals, change their diapers and clean up their messes. The nocturnal sleep disturbances were wearing on me so I would try to research during the day when my mind was sharper, rather than waiting until after the children were asleep. Bedtime required rocking my daughter to sleep while my son crouched in her bedroom waiting for me to finish, then laying beside him in his bed until he drifted off to sleep. Sometimes my daughter woke up and we would have to start the routine all over again. Both still drank bottles before bed and I would have to refill the bottles for them to start their routine anew. When they were asleep I would sit down at the computer to research more programming ideas but often found I couldn't concentrate on the more complicated developmental concepts, my head too heavy with the events of the day. I joined a variety of discussion groups and searched for stories about kids who had recovered. I read them over and over again, looking for clues on how their parents had managed to succeed when I was obviously failing. My husband's job required him to work long hours so there were many nights he wasn't home until after 10 p.m. or out of town for meetings. I felt like a single parent. I could barely keep my head above water most times.

One morning I took both children to the grocery store. I needed to buy a few items: milk, shredded cheese, Arrowroot biscuits, Cheerios, cases of baby formula and diapers. I sat both children in the double seat of the shopping cart and tightened their seat belts. I kept them from hitting and biting each other as I hurriedly stalked the aisles. My son was becoming very agitated and was trying to get out of his seat. He was hitting his sister repeatedly and screaming. The situation was deteriorating rapidly. People were starting to stare. I was almost done the shopping, just needing the milk and cheese so thought perhaps I could appease him by taking him out of the seat for a few moments while I grabbed the bags of cheese and cartons of milk. I let him down in the aisle. He immediately ran to the dairy case and climbed in, stumbling over the various items as he stomped along, to the disapproval of the customers. As I loaded the cart with milk and cheese, he started picking up bricks of cheese and throwing them into passing carts. I remember one woman gingerly picking up the offending package between her thumb and index finger as if it had been contaminated with some invisible poison. She flung it back into the dairy case with a disgusted look on her face. She shot me a look of supreme disapproval but I knew there was no use in trying to explain. I had gotten use to the glares and stares of strangers. I did not need to engage them in conversation to know what they were thinking. I knew how it looked, how my child was behaving and how little control I had over him. When I was out in public with my misbehaving son, empathy was in short supply. As I tried to grab him I could see my daughter standing in the cart, having squeezed out of the seat belt. I ran over to pick her up before she fell and put her down on the floor so I could retrieve my son. Now I had two kids on the loose. I grabbed at my son just before he reached the row of egg cartons. As I picked him up he began kicking and screaming, trying to break free. I knew I couldn't hold him and pick up my daughter. I put him down and took a firm grip on his arm. He immediately collapsed on the floor and kept screaming. Out of the corner of my eye, I saw my daughter starting to wander away. I hurried to my daughter before she disappeared around the corner, leaving my son screaming on the floor while customers maneuvered their shopping carts around him. I wrestled them both back to the cart but neither one would sit in the cart (never mind the actual seats). Left with no other choice, I abandoned the cart, picked up each child under an arm and began carrying them through the grocery store. My daughter started biting my arm, sinking her teeth deep into the flesh below my elbow. My son landed some well placed kicks and punches and I dropped him. Before he could scramble to his feet, I grabbed his ankle. I started shuffling through the store, carrying my daughter sideways under my arm and dragging my son by his ankle. As I passed the long line of cashiers, everybody stopped to stare at my howling, fighting children. Nobody offered to help. When I reached the entrance way my son's wails took on a staccato sound as his head bounced across the steel floor grating. My knuckles were bloody from where he had been kicking my hand with his one free leg and my other arm had ugly red welts from my daughter's teeth. I will never, ever forget the look on the face of the customer who stepped into the opening doors. She looked beyond horrified and refused to move out of my way, blocking my exit from the store. Somehow I managed to get my son to stand and walk past her, still carrying my daughter under my arm. I maintained a firm grasp on his upper arm as I propelled him across the parking lot. I put both children in the backseat then climbed in to wrestle them into their carseats. I had to put my knee on my son's chest to hold him down while I buckled the straps. He was enraged and having a full blown meltdown. He was punching me in the face repeatedly and I was unable to shield myself from his blows as my hands worked to fasten the five-point harness. My daughter was crying hard too but she was easier to wrangle. With both children secured, I stepped outside and took a moment to breathe, resting against the rear bumper of the SUV. I still needed the groceries and wondered if the behaviours would pass so I could take them back into the store. I looked up to see that same customer standing at the store's entrance, watching me intently. She was still there several minutes later when I finally drove away, the kids wailing at the top of their lungs. For the rest of that day, I thought Social Services would be ringing my door bell. I was convinced she had written down my license plate number and telephoned the cops to complain. It would be my last day trip to the grocery store with the children for a very, very long time.

I drove by the daycare construction almost every day. The walls were up but it would be another month or two before the interior would be completed. We were on the list for pre-registration so I was relieved we had some extra time. My son was far from ready to play with his peers. He still wasn't talking either. My plan was to find new workers and train them in daycare integration as well as home therapy. I was reading about incidental teaching and shadow guidelines. We would need someone to go to daycare with our son, to act as his personal assistant, telling him what to do and say. I would need someone to take notes, to be my eyes and ears, so I would know what programming was needed and where specifically my son had come up short. I began searching the Internet for daycare integration manuals. There were lots of articles and books about the importance of peer play and descriptions about the different stages of play as children mature but I couldn't find a single book or article that described how to teach a child to play with his peers. Yes, I knew my son needed to know how to join in group play but how do I teach that to him exactly? How do I teach him to modulate his voice and energy levels to match his peers? How do I teach him to know when a child is annoyed at him when half the communication is body language and facial expressions? How do I teach him about following fluid play routines that have kids riding horses in the old West one minute and the next minute playing space rangers battling aliens? I had long lists of which skills needed to be taught but no idea on how to impart this knowledge to my son. I kept searching, hoping to find a DIY manual somewhere.

One afternoon I was sitting at the kitchen computer while Blue's Clues played in the adjoining family room. My son was sitting on top of the coffee table, drinking his bottle and silently watching the show. He rarely used furniture appropriately. Out of the corner of my eye I saw my 17 month old daughter standing at the edge of the carpet. She was doing something weird with her hands. I turned to look. Her arms were bent at the elbow and held tightly against her sides. Her hands were flapping around her face, like a bird readying for take off. She was staring at the kitchen floor. It was a bizarre sight. I watched as she rose up on her toes and began stutter-stepping across the ceramic tile. She started shaking her head in quick little jerky motions too. I watched, frozen with fear for a moment. Then I reacted. I scooped her up in my arms and began talking to her rapidly, trying to revive her from her trance, willing her repetitive body movements to stop. She was stiff as a board but no longer flapping her hands or shaking her head. She would not look at me. I started crying and hugged her tightly. She stiffened against me and tried to break free. I sat her back on the carpeted floor. She ambled over to the couch and sat down to continue watching the cartoon, having never uttered a sound. She looked so normal sitting there. For a moment I thought I had imagined it, desperately hoping that perhaps I had just lost my mind instead of my daughter losing hers. Couldn't it be just a hallucination from my sleep-deprived brain? I could no longer pretend she was just an 'easy' baby. For the next few days I scrutinized her behaviour and saw more of what I had been missing. I immediately included her in the therapy sessions.

Cynthia Howroyd came for a consultation. She took video of our daughter. When I watch it now, I see a very small child, barely 17 months old. She toddles around, putting all the toys I offer in her mouth. She chortles when I tickle her but stands back, waiting for me to do it again. I put on various animal masks and make the animal sounds. She stands at a safe distance, watching me then pulling the mask off my head. I am doing all the talking and she is blank-faced and silent. At one point she has her back turned to me, squatting on the floor with a toy. I begin calling her name but she does not turn. I crawl closer to her, repeating her name again and again. Finally I am sitting directly behind her and speaking into her ear, just a few inches from her head. She still does not turn. It's as if she is deaf but I know she is not. When I watch this video I realize this has been my daughter's behaviour for some time now. I simply hadn't noticed because she didn't yell and scream like her brother. She wasn't demanding of my time and attention. She was mute and wanted to be left alone. She had slipped into the dark waters without me noticing. She could have been lost at sea had I not noticed her flailing arms that day.

Cynthia gave the video to our psychologist, Paul McDonnell. He confirmed that her behaviours were consistent with a diagnosis of autism. Her diagnosis came a mere nine months after our son's. The weight of this realization was almost too much to bear. We arranged to have her formally tested later in the year, when our son would be re-assessed. I looked forward to getting that report so I could better understand my daughter. Here was another kind of autism, one that was completely different from my son's current condition. There is good reason why they called autism a spectrum disorder. Like snowflakes, no two autistic children are alike and the range of symptoms and severity cuts a wide swath. While my son refused to eat anything my daughter craved oral motor and gustatory stimulation. She chewed on rocks and shovelfuls of sand. She tried to eat cigarette butts and houseflies. She put everything in her mouth and bit people without provocation. My son was a runner and seemed oblivious when stepping on objects, like rocks or puzzle pieces, even in his barefeet. He would barrel through barriers without hesitation or regard for physical pain. My daughter was slow-moving and stayed on the perimeter. She would not walk on grass or pavement barefoot. If I stood her on the grass in her bare feet she immediately became a whirligig lawn ornament, trying to balance on her tiptoes and flapping her hands. She abhorred sandals and always wore socks while my son pulled his off most of the time (the beginning of his undressing program). He did not like to be touched or restrained while my daughter liked to be wrapped tightly in blankets or left to lay under heavy sofa cushions. My son was a whirling dervish with extremely high energy and loud noises. My daughter would sit unmoving and mute for hours or crawl into small, tight spaces whenever she could. She flapped her hands. He sucked his fingers. She toe-walked and toe-jumped. He couldn't do either. She carried around a 'blankie' all day, usually clutched tightly in one hand while my son moved from object to object with random distraction. She loved water and getting her hands covered in wet gooey stuff while my son hated getting anything on his hands. My son loved anything with visual stimulation but my daughter showed very little interest in flashing, spinning toys. She preferred tactile stimulation like bubble wrap or sandpaper or fine motor activities like stringing beads. I would have to buy a whole new set of toys and develop a whole new set of activities if I wanted to reach inside her world. We had no other choice but to throw her the same life line we had given our son. We would be doing two ABA programs now. My beautiful, sweet little girl was now in the same boat as my son.

1 comment:

  1. I look forward to read more. You have had your hands full.
    As a mother of five I can relate.