The Coxless Pair

Now we had two kids in the rowboat. We needed more help than ever before. We advertised in the newspaper and the on-line job bank for workers. We carefully crafted an appropriate description of the job and included the phrase "experience with young children an asset." We would need two workers, one for our son and another for our daughter. One worker would go with our son to daycare in the morning while our daughter stayed home to work with me and a second worker. This second worker would go to daycare with our daughter in the afternoon while the first worker would come to our house to work with our son. I would need to teach these workers individually how to teach my kids in group settings. They would need to be able to observe, assess and intervene with speed and efficiency. They would also need to take notes. It was going to be a demanding job, perhaps even more demanding than the skills needed for home therapy programs.

This arrangement was contrary to everything I had read about generalization. All the good books recommended having my children learn from as many different teachers as possible so as to be able to generalize and transfer their skills between people and places. Autistic children are known for their rigidity in learning; their ability to perform only in specific settings with specific people who say specific words about specific things. When a target list is learned often these kids can't transfer and apply this knowledge to novel situations so the program isn't really 'mastered' and the skill isn't really learned. In typical peers this ability to generalize is called 'fast mapping' where they learn something in one situation and immediately apply it to any situation that requires the same thought process. The more workers who participate in therapy, the more likely it is autistic kids are able to use their skills in different settings. The best way I can describe it is how you teach a kid to tell time: you explain about the minute hand and the hour hand and then demonstrate with a few examples. They take the information you have given them and figure out what 12:01 is based on the general directions and specific examples you gave them. They can generalize the rules to be able to tell any time on any clock. With typical kids, you don't teach them to memorize every configuration on a clock, 12:00, 12:01, 12:02 and so on. An autistic child's programming is different: you do teach each placement of the hands on a clock and have them match up the digital to the analog and you expose them to different types of clock faces, such as a grandfather clock, an alarm clock, Big Ben and so on. You must teach them so that they learn to generalize the specific individual times on one clock into the homogeneous group of telling any time on any clock. The expression "can't see the forest for the trees" was uttered to describe autistic kids. They are not 'big picture' thinkers; that's what therapy does. ABA therapy expands their minds so that they can expand their world. Lack of generalization is one of the downfalls of poor programming, where individual targets become more important than overall skill application. Therapy is meant to teach autistic kids how to learn, not how to memorize. The ability to apply their memorized knowledge to different situations is fundamental in mastering a skill. It is fundamental for long term success as well since the child is being taught how to think and reason, instead of rigidly recalling fragments of drilled information.

Despite these reasons for multiple workers for our children, I needed to compartmentalize their programming. I reasoned that if we 'lost' a worker, I did not want it to adversely affect both children's therapy programs. As well, these workers would be able to learn the children's home programs and know what they were capable of doing at daycare. For example, if my son learned how to say 'hi' in his verbal imitation program at home, then the worker could start insisting he do it when he arrives at daycare. If my daughter learned how to take turns at home, then this social skill could be practised with her peers at daycare. It was vital for the workers to know my children's abilities and short-term goals if this daycare integration plan was to work. In retrospect I should have hired four part-time workers who would come on alternating days to work with both children, attending both home therapy sessions and daycare so that if we were to lose one worker, only a portion of the children's programs would be compromised. When I knew better, I did better but the reality of the employment situation was that autism therapy was not a career consideration for most people in our city. It would have been difficult to find four reliable part time workers at that time.

We received a handful of responses from our job posting. Interviews were held in our living room. We spent the first half hour of the interviews explaining what ABA therapy was and our goal of recovering our children. One candidate impressed us: When asked about whether she thought she could handle all the nitty gritty of working with an autistic child she recounted how she had grown up babysitting the neighbour's son who was a fecal smearer. She smiled and shrugged and asked if that was enough to satisfy our concerns. I had recently read about that particular trait: in a quest to satisfy their tactile needs, some autistic children would play with their poop, smearing it on themselves and any other surface that was handy. While my stomach turned at the reference, my heart leapt: here was the type of worker we wanted, somebody already aware of the disgusting bits but still willing to give it a go. We needed people who were willing to overlook our children's bad habits and love them anyway. She was 19 years old, on her own for the first time and very cheery. While her father and step-mother had moved to our city, the remainder of her family still lived out of province. She had not grown up here and was relatively new to the area. She expressed an interest in furthering her education but did not have it in her immediate plans. Her name was Sarah and she topped the list for hiring.

The second worker we chose was in her twenties, a university graduate and a newlywed with two young step-children. She was a distant second to Sarah in likeability but seemed much more solid in her future plans. She also worked part time at a nursing home on afternoon shifts but was willing to change those hours to accommodate our schedule. She had grown up in our neighbourhood. All her family and friends lived in the city. We reasoned she would be a good, reliable worker who had experience with typically developing children. She knew what children 'should' do and she was accustom to the more unsavoury parts of providing care to those who could not look after themselves. We chose her from a small pool of unremarkable candidates. It was a bit like choosing the tallest of the seven dwarfs.

The daycare was almost ready for us so we needed to get ready for it. Cynthia Howroyd, our private consultant, came to tour the facility and meet with the new workers. We set up a plan and a schedule. We met our children's teachers and explained our goals to both them and the director. We would start off slowly. While Sarah was ready to start work immediately, the second worker had to give notice of her shift change request at her other job. She wouldn't be able to join our crew for two weeks. I liked the chance to concentrate on one daycare program at a time. Our daughter still seemed so young, not quite 18 months old. I thought a couple of extra weeks of delay before starting daycare was no big deal. I was wrong. Every moment counts when you are playing beat the clock with autism.

When I met with Paula to discuss the daycare option we had both good news and bad: Early Childhood Stimulation had a program which provided funding for integrated daycare. In essence, the government would give extra money to a daycare to provide an identified special needs child with a personal assistant. The idea of getting some funding help was welcomed news but there was a drawback. The two choices were mutually exclusive: We could have daycare funding or Paula's continued monthly visits. We could not have both services. It didn't make any sense since they were two different programs with two different goals but those were the rules. Paula's particular sub-department of government had a limited budget and funds were not allocated for both services for the same child. We could appeal but the waiting time was lengthy and the likelihood of success minimal. The choice was simple: we could use the money and while it would not cover the total cost of either the daycare fees or the workers' salaries while there, it was at least some help to our stretched budget. Paula would remain available to answer questions if I telephoned her. I would take her up on that offer many times over the next few years.

While we waited for the daycare to open, I provided both workers with a home study course we had purchased. The "Help Us Learn" manual is an excellent guide to teaching anyone the fundamentals of behaviour modification therapy. Although the technical terms we used were sometimes different than those in the book, the general principles it taught through reading materials and worksheets were very useful. It was a lengthy text, including a final exam. It even included a description of setting up visual schedules. The second volume was for the program director (which by default would be me). The program guide included sample data sheets for use in almost any situation as well as the scoring key for all the worksheets and exam. I used these forms to help create many of my future data collection tools. We made completion of the study manual a requirement of employment.

Sarah started coming to our house each day to learn the home therapy programs and to become familiar with our son's ways. We still had some time before the daycare was open. We were now doing additional programs that focused on language comprehension, such as reading short picture books of known children's characters and demonstrating the actions described with the accompanying action figures. I had purchased several Blue's Clues and Teletubbies board books with simple language, as well as small hard plastic figurines of all the main characters. If the language in the book was too complicated we would truncate the sentences and describe just one action on each page. Our son's favourite was a Teletubby book about happiness. Each page showed a different Teletubby discovering something he or she enjoyed and jumping up and down to show joy. Our son would take the corresponding Teletubby and make it jump up and down on the coffee table, pounding their hard plastic feet into the soft Mexican pine, leaving deep grooves in the surface. I didn't care because my son was demonstrating how to play with objects appropriately. To this day the indentations remain in the coffee table and I smile every time I look at them. He wasn't lining things up and looking at them at weird angles out of the corners of his eyes. He was doing entry-level pretend play with objects and demonstrating his knowledge of action verbs. A little collateral damage was acceptable.

Sarah took her job very seriously, perhaps too seriously at times. She asked a million questions and often I didn't have the answers she needed. I was still learning and would need to look up the answers before I could satisfy her queries. Sometimes I would get frustrated by her anxiety or need to understand everything we were doing. I should have realized that the more knowledgeable our workers, the better their ability to perform the programs, both at home and daycare. Teaching the theory was as important as teaching the practical. Wasn't this what I was learning about how to teach my children?

The first attempt at daycare was in the afternoon. I arrived with my son's worker and both my children. We didn't have anyone to look after our daughter yet. We had decided to try it for an hour or so one day during the first week of operation. It was a confusing spot: Lots of new kids, lots of new teachers and lots of new toys. The owner/director had not operated a daycare before but was a trained Montessori teacher. I had gone to law school with her first cousin. I immediately liked her and her courage to give our new program a try. My son was immediately fascinated with a floor model wooden cube toy. It was huge and heavy, measuring 40 centimeters in each direction. It had a large wire bead structure on top where he could push the vehicle-shaped beads through loops and dips, a tic tac toe board on the side where he could flip the wooden panels, a cog he could spin through a maze on another side, a magnetic wand to manipulate a ball bearing through a different maze on another side and -- his favourite -- a big spinning wheel with geometric designs on the fourth side. Once he discovered this toy, he squatted in front of it and there he remained. He was oblivious to the children around him and the teacher's instructions. Soon it was time to go outside to play. I managed to tear him away from the toy and get him to the cubbies. It was late November and frigid outside. All the kids had winter coats, snow pants, boots... and lots of Velcro. My son covered his ears as the cacophony of rips and tears rose to a crescendo. He tried to bolt out of the dressing room. I realized that if my son was to be in daycare he needed to get past his Velcro aversion. I would need a new program immediately.

Somehow we managed to get him dressed with Sarah covering his ears while I put on his outerwear. Once they were in the fenced area, I disappeared with my daughter but without saying goodbye. I wanted to see how he was going to do on his own and how Sarah would fare on her own. They were in the deep end now and she had had very few swimming lessons. I remembered, with trepidation, the disaster which was his last try at daycare but this time I was mentally prepared for a rough start. I would not be dissuaded by his crying. There was a higher purpose to the process now. I returned in an hour. He had been fine and had not noticed my absence. I found him back inside, squatting again in front of the cube. He had not participated in any of the group activities and when he had been outside, he had spent most of his time throwing rocks through the holes in the chain link fence. He had shown very little interest in the other children at all, other than to shove them away when they came too close to see the cube. I asked the teacher where they had purchased this item. I drove to the store and bought it the same day.

I had been reading about de-sensitization of stimuli, which is a fancy way of saying how people learn to ignore certain sounds, smells or sights around them. For example, when we first moved to our new neighbourhood, the garbage truck woke us up for several weeks until our brains adjusted to it as 'background noise.' If you work as a coroner you get use to the smell and the sights in order to function at your job. The idea is long term exposure to certain things desensitizes us to their offensive qualities... we no longer find them unsettling. I had read that there were two ways to do this: incremental and flood.

The incremental exposure method would work very well for the Velcro aversion I guessed. I started slowly by giving my son his beloved bottle and letting him watch Blue's Clues. I then began opening and closing the Velcro on his sneaker, moving ever closer to him in gradual steps. As he focused on his television program he was less likely to obsess on the noise of the Velcro and eventually he became very well adjusted to the sound. I could sit on the couch beside him and manipulate his footwear without any reaction from him. It would still take several weeks before he was able to put his footwear on in the crowded room of classmates without his hands over his ears but in the end it was successful. I had managed to raise his level of tolerance and I was amazed at how little effort it had taken to overcome this obstacle.

Flooding is something that is quicker in results but also quite risky. If a child dislikes a certain stimuli then an immediate, high level of exposure will usually cause an immediate, high level of anxiety, thereby further reinforcing the aversion in the future. However, if a child has an obsession with it, he may be able to reach a point of satiation and not crave it as much in the near future. This theory is similar to the practical experience of eating a whole chocolate cake in one sitting since it is then highly unlikely you will want another slice any time soon. I gave my son the cube and encouraged his continuous play with it in all his spare time. While he remained interested in the cube at daycare, he was no longer obsessed with it and the worker was able to tempt him with other activities as well. I was excited by my success with these programs and started looking at other sensory considerations in his non-compliant behaviours. I was able to identify several sensory-seeking and sensory-avoiding situations that could be adjusted with the same exposure methods. In particular, this new found knowledge gave me insight into his food aversions and I began to formulate a plan for his diet.

The hardest part of daycare was my son's inability to sit with the other children at snack time. He was fearful of the food placed in front of him which was obvious from the way he would begin crying when a plate was placed near him. The daycare was still in search of a full time cook so sometimes it was Tim Horton's timbits or scrambled eggs and toast when the muffins burned. I couldn't count on the menu I had been provided at registration. I knew he had to eat something so I sent arrowroot biscuits and he was allowed to drink his bottle out in the hallway. However, I made it a rule he could not have his bottle until after he had sat at the snack table with his peers for the duration of snack time. I didn't care if the worker had to hold him there, she was to say "first sit, then bottle" and physically re-seat him as many times as necessary to get him through snack time. He could choose to eat his arrowroot biscuits or throw them on the floor but he still had to sit at the table while his peers ate their snacks. I am sure his kicking and screaming gave his tablemates indigestion but this was the first step on the long road to eating like typical kids. It was a very bumpy road indeed!

Just as our son's daily therapy routine was established, our second worker came to work with our daughter. My mornings now consisted of waiting for our daughter's worker to arrive and then driving our son to meet his worker at the daycare. Once he was changed into his indoor sneakers and in his classroom I would return home to work in our daughter's program. She was following many of our son's early programs of imitation, songs and social interaction games. She enjoyed our mornings of one-on-one teaching time and seemed to be coming out of her shell more. At lunch time her worker would leave for her lunch break and I would again return to the daycare with our daughter in tow to take my son and his worker back to our house. Sarah would have a break time, upstairs in our spare bedroom while I fed the children their meals. Then it was time to bundle up my daughter and meet her returning worker at daycare for the afternoon session. Once my daughter was in her 'work room' I would return home to work with my son.

Our daughter's first experience at daycare was not all it should have been. Afternoons mean nap time for most 18 month old children but not our daughter. She had not napped since she was fourteen months old. I would have the worker go to a separate room at the daycare to work on certain home therapy programs with our daughter while her classmates slept. Afterwards she would join them for snack and play time but her opportunities for social interaction were more limited. The worker had to leave by 4:30 so that she had time to get to her other job. The children didn't have snack until after 2 p.m. Our daughter was missing most of the structured group activities her peers did in the morning. There were no other options. We were paying for one full time spot, divided up over the day between both children. My daughter had to be home in the morning to do therapy and be gone in the afternoon so my son could do his work. While the situation was not ideal, it was at least more socialization than she had been getting with her brother. At 18 months her peers weren't exactly reciting the alphabet and talking about their weekend plans in circle time so I reasoned that the current arrangement could be tweaked in the future but for now, it was sufficient for our needs. Again, I made a critical mistake. My daughter needed the morning interaction as much as my son did and had she had better exposure at this early age perhaps her social skills would not have been as delayed for so long. We could have been running both afternoon programs at home if I had converted the nursery into a work room and housed both children in the same room for sleeping. It could have worked but I was too rigid in my thinking then too. It would have cost us more money as well for the daycare attendance as we would have had to pay for two fulltime spots, regardless of whether the children were there in the afternoon.

I put together two small binders of their daycare programs, listing things like 'greetings,' 'dressing/undressing,' and 'lining up' as goals for both children, as well as additional skills specific to each child. Each program had its own page with a full description of the appropriate goal and examples of how to assist my child in achieving it. The workers were to place pluses and minuses on the data page as a quick indication of how many opportunities were taken or missed on that particular day. Eventually my daycare data collection expanded to include the notations 'FP' 'PP' and 'I' for 'fully prompted' 'partially prompted' and 'independent.' I would need to know whether the children were relying on their workers to tell them what to do or whether they were taking some initiative themselves. This was the beginning of my realization that social learning does not happen in dichotomies and there is more to it than just right or wrong. There are approximations of behaviours that can be shaped into the end goal, that even the slightest improvement can show huge gains in social skills. I prayed for more "I's" but rejoiced in all the "PP's" as well. The "FP's" told me that the children hadn't sufficiently practised the skill in the vacuum of home therapy so were unable to use it when the setting changed. I would redouble my efforts on those particular skills during home teaching. It became a daily review of the data sheets and tweaking of the home therapy programs. These would be the programs the worker would spend extra time on during nap time therapy.

It was a difficult process which required a keen eye to notice the slight shifts in the data collection. Most importantly I would need to trust the worker's abilities to do this job. I wouldn't be there to supervise and give instructions. They would be rowing without a coxswain to steer them in the right direction. I found that idea terrifying, putting my trust into people so young and inexperienced with no vested interest in my children -- other than their paycheque. I think they found it terrifying too. It was a big job and I was ill-prepared to provide the clear directions they needed before sending them out into the vast open sea. I always wondered whether they were utilizing the daycare time to best advantage, if they were missing opportunities to teach and if this integration program would serve any purpose at all. Only time would tell and it was in short supply. All any of us could do was continue rowing, hopeful we were making headway.

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.

Captain's Table

Some of my best memories from childhood involve food... my mother's shortbread cookies at Christmas, hot cross buns at Easter, buttery corn on the cob in the summer. My mother is a fabulous cook, her sweet and sour meatballs being the first dish emptied at the church's potluck suppers. My husband is Italian and the first time I ate dinner at his parents' house it was five courses -- not including dessert! I simply could not reconcile my love of food with my son's overt aversion to it. He hadn't always been like that.

When our son was a baby he would spit up most of his bottle. At first we thought it was because we weren't burping him enough but when he started projectile vomiting his stomach contents we ended up in the hospital for an overnight observation. The doctor ordered a G-I series. The testing didn't show any problems. Since he had been premature, the diagnosis was some acid reflux difficulties and a change in the formula brand was made. Eventually these dietary problems subsided and he started eating everything. He particularly loved creamed corn. I couldn't shovel it into his little mouth fast enough. He would grunt between bites, his mouth hanging open and his little body straining forward in the high chair. He reminded me of those nature shows of a mother bird feeding her chicks. He ate all types of pureed vegetables and fruits as well as most of the jarred meats. I prepared some foods from scratch but bought the prepared meats. He was a joy to feed, his chubby hands slapping the high chair tray and his little head bobbing around as he gummed a mouthful of food.

When I moved my son up to the jars of chunky mixed foods he began to gag on the consistency. He started refusing all spoon-fed foods, clamping his mouth closed and crying. I decided to try some finger foods instead. I gave him some shredded cheese one day and he gobbled it up. I soaked cheerios in milk and he ate those too -- until he choked on those and then refused to eat them again. I overcooked macaroni in chicken broth and had him try those. He enjoyed slurping the noodles from between his fingers until one day he choked on one. Pasta was now off his menu too. He started to resist eating anything besides the shredded cheese. Over a period of a few weeks he eliminated all but the cheese from his diet. I continued to offer different finger foods,but he would have none of it.

He had developed very specific tastes. He would only eat Sobey's brand shredded marble cheese. I shopped for groceries at Sobey's and this was the brand I bought. I didn't think his eating habits had become so rigid until we took a trip to New England. He refused to eat the American version of shredded cheese the entire six days we were away. We bought every brand in their grocery stores but none were acceptable to him. He wouldn't even put it in his mouth. It looked different than the cheese he normally ate. He was still drinking formula from a baby bottle so we had to give him more to compensate for his lack of solid food. He was waking several times every night and we guessed it was because of hunger. Each time he awoke he would drink at least 5 ounces of formula before he went back to sleep. It was now his only reliable source of nutrition.

I was concerned but our family doctor assured me that it was just a phase and he would get over it soon enough. Some kids are picky eaters. She suggested I just keep presenting foods to him and eventually he would try them. I knew better: he had absolutely no tolerance for food. I couldn't get him to try anything off my plate and when I put food -- other than cheese -- on his high chair tray he would start screaming and not stop until he had thrown everything on the floor. After awhile I stopped putting food on his tray. I was tired of scrubbing the floor three times per day. Occasionally I would tempt him with a cracker or a piece of fruit but he continued to refuse everything except the cheese from the Sobey's grocery store.

His poor diet continued until his diagnosis. The Psychologist, Paul McDonnell was married to an Occupational Therapist. Liz McDonnell worked at the Stan Cassidy Center for Rehabilitation in the City of Fredericton. This Center provides invaluable services to the entire province of New Brunswick. While they are widely known for their rehabilitation services for spinal cord injury patients, head injury victims and what not, they had developed a team who specialized in treating young children with disabilities or serious injuries. Their team was -- and is -- incredibly dedicated and knowledgeable. These professionals work as a team to treat the whole patient and I am grateful to have this calibre of services in our province. Our pediatrician had sent in a referral for their assessment team to see our son concerning his food intake. The timing was perfect: Liz McDonnell and the rest of the team were coming to our city as part of their whirlwind tour of several families. Dietary concerns are a high priority for the team so we had been fast-tracked for assessment.

The team came to my house in March to see my son and his aversion to food. They showed me how to use a 'first-then' schedule to explain to our son how to eat. This schedule is a picture board showing "first take a bite" followed by an arrow pointing toward "then get reward." The 'first' and 'then' pictures are attached to the base board by Velcro coins so the 'first' required activity can be changed (take a drink/take a bite) as well as the 'then' reward (bubbles/toy/preferred food). Later I would learn that first-then schedules are useful for getting kids through any 'sticky' moments. Whenever a child wants to do a preferred activity or get a preferred reward, he may have difficulty understanding that there is a prerequisite step such as first eating their vegetables before getting dessert or first taking a bath before reading bedtime stories or first putting on their coat before going outside. This visual aid helps the child understand the steps to receiving what they want.

The team was very concerned with my son's dependency on the baby bottle as well as his refusal to eat a variety of foods. They used a small Tupperware container, the size of a pudding cup. It had a lid that had been punctured with a small hole and a clear heavy plastic tube inserted that tightly filled the hole and stuck out like a flexible straw. The container was filled with liquid and the tube held up to my son's mouth. If he did not suck the liquid through the straw then one of them would quickly depress their thumb on the rubber lid and the liquid would squirt through the tube and into my son's mouth. It was simple physics but completely ingenious. They managed to get my son to drink a couple of ounces of milk this way. My son also nibbled at Arrowroot biscuits and Cheerios, two previously enjoyed foods. The team may even have had some success with apple sauce or pudding. I don't really remember now. It was a lot to take in that day. There were three people crowded around him, one holding down his arms, another holding the spoon while the third controlled the reward. My son spent a lot of the time loudly protesting but there was more success in their brief two hour visit than I had been able to do in two years. They instructed me to continue with these "food trials" in order to get my son to eat and generously offered to leave the Tupperware contraption for me to use.

I diligently tried the routine each day. My son continued to eat the dry cheerios and the Arrowroot biscuits but he absolutely refused to eat anything else I offered. When I brought out the little Tupperware contraption he clamped his mouth shut tightly or bit the tubing so I couldn't shoot the milk into his mouth. No amount of toys or coaxing could get him to co-operate. After almost two months of daily trials and no success, I gave up. I had a lot of mixed emotions. I am a mother and so feel my primary job is to nurture my child. Eating is a fundamental part of nurturing. I was failing at this part of motherhood which meant, at least to me, that I was failing at being a mother. Of all the aspects of my son's autism this particular obstacle was the most emotionally charged. I couldn't handle the daily reminder of my failings during the food trials so I stopped doing them. This was undeniably the biggest mistake I made on our journey. We veered off course and in the end had a much greater distance to travel because of my poor sense of direction. At the time I told myself that once he could talk and tell me what he liked to eat things would be easier. It was not.

A month later I received a telephone call from Barb Dugas, the dietitian who had come to my house that day with the rest of the team from Stan Cassidy. She was following up on how the food trials were going. I complained bitterly about the lack of success. Barb is a kind and understanding soul who heard in my voice the frustration I felt. She suggested I bring my son to Stan Cassidy for a week of food trials. The earliest appointment I could get was several months away. They would have my son eat breakfast, lunch and supper there for five days straight. At the end of the week she promised he would be eating meat and potatoes! I thought she was exaggerating but was thrilled with this opportunity and grateful for Barb's compassion.

The appointment was set for the Fall. In the meantime we ran our ABA program. September came and we no longer had any workers. The nanny quit that month to pursue other opportunities. This lull in employment was the perfect time for a week at Stan Cassidy except for one small problem with childcare. The Stan Cassidy Centre was located in Fredericton, a two hour drive from our home. While I was at Stan Cassidy with our son, there was no one to look after our daughter at home. My husband could not spend a week at home with our daughter because he had to make money. I travelled with both children to my parents' home in the town of McAdam. The Stan Cassidy Center was an hour's drive away, instead of the two hours from our home. I could leave my daughter with my mother while I drove my son to his daily appointment. Staying with my parents was the only solution.

Monday morning did not start off well. We needed to be at Stan Cassidy by 9 a.m. so that meant I had to leave my parents' house by 7:30 to ensure I had ample time to find the address. I had been instructed to NOT give my son anything to eat before the appointment. While we were getting ready to leave my son got very vocal about wanting a bottle. His shouting woke up his sister. When she saw I was leaving without her she began howling. She had not spent a lot of time with my parents and was scared to stay without me. I made her a bottle to calm her down and provide her with some comfort but it only served to further incense my son. He tried to take the bottle from her. I kissed my crying daughter goodbye and wrestled my son into his car seat. As I drove away my daughter was still screaming at the kitchen window. My son started screaming too as well as kicking the back of my seat. He began chanting 'bah bah' over and over again, using the word approximation we had taught him for bottle. When none was forthcoming he would begin screaming and kicking again. This verbal assault continued the entire drive to Fredericton. By the time I reached our destination I had a splitting headache.

I sat in the waiting room and filled out the requisite paperwork. I watched the clock. It was now 9:30 and we were still waiting. I knew my son -- who would be turning 3 in a couple of months -- must be starving. When they had told me not to feed him before the appointment they had explained they wanted him to be hungry and therefore more willing to eat new foods. My son spent his waiting time climbing on and under the various couches and chairs in the room. Occasionally he would start rooting through the diaper bag looking for a bottle and muttering 'bah-bah' repeatedly. Cynthia Howroyd appeared. She was working at Stan Cassidy that day and had heard we were there. We chatted for a few minutes and I confided in her about the rough drive. She suggested I feed him when he awoke in the morning but nothing during the ride to Fredericton. She also got me some Tylenol for my headache. As always, I was grateful for her help. Finally the team came to collect us.

I walked with my son to a small room down the corridor. They had a special high chair for him and several toys and gadgets of interest. They proceeded to use the Tupperware drinking cup and various pureed foods. My son looked terrified. He didn't like the toys they had. He cried constantly and tried to climb out of the highchair. I sat at the back of the room while the team worked their magic. After an hour he was released from the chair and I was told to come back at 1 p.m. We had two hours to kill. They told me not to feed him. I took him to McDonald's to play in their ball pit. He had eaten very little food during the session: a few spoonfuls of applesauce, about an ounce of milk. He had not had any formula or cheese since bedtime the night before. It had been 16 hours since he last ate anything substantial. He was cranky. Again.

When we returned to Stan Cassidy, my son bolted as soon as we reached the front entrance. He didn't want to go back inside. I had to carry him in to the waiting room and restrain him there. Thankfully it wasn't a long wait. We stayed in the room for two hours this time with lots of play breaks in between bites and sips. The team kept asking me if I was alright and saying they understood how hard this must be for me. I think it concerned them that I was sitting quietly, neither praising nor consoling my son. I felt that this was their show and I was meant to be a spectator, not a participant. My son was use to me leading therapy time and I didn't want him to confuse who was in control for these food trials. I assured them that I was not upset by the kicking and screaming because I wanted him to eat too. They suggested I try to spoon feed my son. I did as they requested. I am unsure whether this was part of their process or a means to test my commitment but after that session they never asked me to feed him again.

At the next break we went to the mall to walk around. It was rainy and cold outside. There were very few places I could take him. I had not had anything to eat myself but didn't feel hungry. I hadn't realized that this would be the routine of the week. There was so much down time between sessions that I could have been doing two full sets of his programming each day. I thought it would have been full day sessions so I hadn't brought his program book and supplies. My son wandered around the mall, peering into garbage cans, climbing under and over the benches, grabbing things off of display shelves. Slowly the time passed until we could return for the supper time session.

I didn't bother trying to get my son to walk into the building. I carried him in as he tried to wriggle free. I sat in the small room and watched my son struggle and resist. The team continued their success with some bites and sips. Finally it was time to drive back to my parents' house. My son was really hungry now. It had been 24 hours since he had eaten any cheese or drank a bottle. He kicked and screamed and chanted 'bah-bah' the whole way. I arrived shortly before 8 p.m. It had been a twelve hour day and my headache had returned. I immediately made my son a bottle and gave him shredded cheese. He ate and drank greedily. I spent a little time with my daughter who seemed miffed by my absence and not entirely happy to see me. Then I put them to bed and got ready to do it all over again the next morning.

The week continued with the same routine, except for two minor changes: I brought in some new toys to use in the sessions since he wasn't motivated by their reinforcers and I started feeding him before we left in the morning. I also brought a bottle with me to give him on the drive back to my parents' house. I brought an extra bottle too, in case he needed it. My son had to eat and he was certainly not getting enough during the food trials. I didn't want him to get out of the habit of drinking his liquid food supplement either. It was his main source of nutrition. As the week progressed I kept waiting for the big breakthrough -- and the meat and potatoes. At the end of Thursday's late afternoon session, I asked whether they thought he would be ready for that kind of meal the next day. They assured me he would.

Friday dawned full of promise. It was one of those crisp Fall days with brilliantly coloured leaves and bright sunshine. "Today is the day my son will eat a meal" I told myself as I prepared for the drive. I was so filled with hope. There would be only two sessions that day. One at 10 a.m. and the second at 2 p.m. (it was Friday afterall). Liz McDonnell would not be there for the day, having other commitments for her talents. Another team member took over the lead. The morning session progressed like all the others. The afternoon session was another thing entirely.

I had bought a ball and bubbles and we spent the time between those two sessions on the lawn at Stan Cassidy. I blew bubbles for my son and kicked the ball for the two of us to chase. We sat in the car and watched Teletubbies and Blue's Clues on the portable videocassette player. I kept him distracted so he wouldn't ask for a bottle. I didn't feed him anything. Finally it was time for the last session of the week. I crossed my fingers and in we went.

The meal consisted of mashed potatoes mixed with pureed chicken. It looked exactly like the chunky baby food my son had first gagged on. I told them this. They assured me it would be fine. After my son had two or three spoonfuls of the mash he gagged. He kept gagging when they gave him the next spoonful. Then he threw up. They wiped him off and fed him some more. He gagged again. They fed him again. He threw up again. They wiped him off again. This cycle of feed-gag-feed-vomit-wipe was repeated until most of the mixture had been scooped from the bowl. There was my meat-and-potatoes meal. They had done just as they had promised and it had been a spectacular failure.

I drove back to my parents' house angry and bitter. We had wasted a week of precious therapy time. When I had sat in McDonald's on that first day of food trials I had a delirious dream of buying my son a Happy Meal at the end of the week. I was hoping for a miracle. What I got instead was a child who not only refused to eat food but now started gagging whenever he saw a spoon. It took several weeks before he would sit in a high chair again without crying. I became determined to find a better way to share my love of food with my son. It would take a long time to get back on course with eating. It was nearly two more years before we ordered that first Happy Meal... and it was a very happy meal indeed.

The First Squall

We were down to one worker, the male 'volunteer' from the special needs employment service. He would be leaving at the end of the summer to return to his school job. We arranged to increase his hours so that our son would have more opportunity to practise his skills with another person. Our son seemed to be enjoying this therapy time more and more and the tantrums were slowly reducing. Life was far from normal, however.

We had gates that blocked off the kitchen and family room from the rest of the house but our son had learned to scale one of them and could unlock the front door. One summer afternoon, while both my infant daughter and I were sick and dozing on the couch, I awoke to the sound of a strange man's voice. Our son had opened the front door and wandered down to the traffic island alone. This neighbour had been standing in his front yard talking to another neighbour when our son came outside, leaving the front door wide open. After watching our son drop pebbles through the manhole cover for 20 minutes and no adult emerging from the open doorway, the neighbours became concerned. When they spoke to our son he had stared at them blankly and then tried to run away. They stopped him before he got too far. The neighbours did not know us. We had moved onto the end of the court in the winter and we didn't socialize. Our son was such a runner that getting in and out of our vehicles was a very quick process. We didn't dawdle in the driveway and certainly didn't have time to chat up the neighbourhood as we carried our son in and out of the house. In my feverish haze I heard these questions: "Hello? Is anybody home? Are you missing a little boy?" I was dishevelled, still in my pyjamas, covered in drool from my young daughter and completely clueless that my son had been wandering in the street for half an hour; not the best first impression. We installed deadbolts at the top of all exterior doors the next day.

I still had to watch our son constantly when he was around the baby but he wasn't nearly as violent with her as he once was. Gone were the days when he would attack her while she slept in her crib. Now he hit her when she was crying or pushed her away when she disturbed his perfect line of cars. As long as I ran interference, our daughter was kept out of harm's way.

He was now eating Arrowroot biscuits and dry cheerios dipped in peanut butter regularly, as well as a bag of shredded marble cheese and countless bottles of liquid supplement. He had recently tried Lays plain potato chips and despite their lack of nutritional value, I was happy to see him not gag on this new food item. He still had to be strapped into a highchair at meal time as he would not sit at the table to eat. He was growing and had regular bowel movements so we weren't too worried about his nutritional intake. I wanted him to eat more food but I also wanted him to talk and be normal in so many other ways that I made mealtime challenges a low priority. It was the wrong decision but I wouldn't know that until many months later.

We had not considered potty training. I had never potty trained a child in my life and didn't know where to start, especially since all the books I found were for typical children. I decided to wait on this challenge as well. I still stand by that decision and will explain the theory and practice of potty training in another entry. My decision to wait was one of the 'lucky guesses' I made, which helped to balance out some of my mistakes.

I received a telephone call from the City Hospital SLP with a date for our next appointment. It would be in three weeks. I inquired whether once testing was finished I could expect speech therapy appointments with more frequency. She told me we would discuss it at the next appointment. I again explained to her that we were doing ABA and speech therapy needed to be an integral part of the program. Again she told me we could discuss my concerns at the next appointment.

I drove to the city of Fredericton to meet with Cynthia Howroyd to discuss new programming. She had arranged for me to meet another couple with whom she had worked. They had a daughter who was now indistinguishable and they had brought videos to show me. While the initial video showed her walking barefoot over Lego repeatedly and playing inappropriately with a stuffed toy, she looked much higher functioning than my son was. Still, as I talked with them about the hours spent doing therapy and the struggles they had had financially I found comfort. When they spoke about how they now had a nearly typical little girl who would go to Kindergarten without a diagnosis in another year my heart ached for the same prognosis for my little boy. I so badly wanted to be in their position. As I watched the last video of their daughter singing songs and playing with her father I bit my lip to keep from crying: I wanted that and I wanted it now. As I drove the two hours home I felt bone-tired knowing that we had such a long journey in front of us. I kept replaying in my mind the video of the happy little girl and hoped against hope that one day I would have a video like that of my own child.

The day of the third City Hospital speech appointment arrived. We made it to the waiting room without incident and were quickly greeted by the SLP. She had finished the testing and was going to give me an oral report on our son. I had not brought pen or paper so I couldn't make notes. I wasn't given a copy of her report. While I no longer remember the details of what she said I do know that he was two standard deviations below the norm on the bell curve. I remember gazing at that graph as she explained how his expressive language -- his ability to speak and express himself -- was far below average. "Okay," I thought, "tell me something I don't know." She went on to say that his receptive language -- his ability to understand what was said by others -- was also below peer level. Again, it was no surprise to hear this information. She began talking about PECS, the Picture Exchange Communication System. PECS is used by non-verbal children and adults to create sentences to communicate. It starts with a simple requesting phase where a child gives an adult a small laminated picture in exchange for a tangible object, such as a toy or a cookie. Eventually that routine is expanded to a sentence strip where the child creates the phrase "I want cookie" by placing the pictures for "I want" and "cookie" onto a Velcro strip and then gives that to the adult. The Boardmaker program that creates these pictures can make virtually any picture to form compound and complex sentences, although many of the pictures require a certain level of abstract thinking. For example, the picture for 'help' shows the American Sign Language hand symbol for help with arrows demonstrating the movement required when actually making the sign. I did not think my son would understand these sorts of abstractions and besides, wasn't it just better the way we were doing it, teaching him to actually say the word 'help' when he needed it?

As the SLP continued to explain about PECS I interrupted her. I told her I didn't want my son to use PECS especially since it involved a lot of Velcro. I wanted my son to talk. She looked perturbed at my objection and impatiently explained that my goal should be for my son to be able to communicate and PECS would give him this skill. I wanted language -- she wanted communication. I continued to argue saying my son was capable of making sounds and we had a private consultant who had been working with us to teach him to speak. The SLP sat back in her chair and looked surprised. She asked whether I planned to continue using this private speech therapist. I told her I didn't see any reason to stop. I explained what we had been working on and how my goal was for my son to talk like other children. The SLP looked at me and said "Look, you need to understand something. Your son is autistic. It is not likely he will ever learn to talk." She should have slapped me in the face because that would have stung less than her words.

I tried to salvage the situation and asked when we could start scheduling regular speech therapy appointments. She told me that if I wanted to have speech therapy with her then I needed to agree to the use of PECS. I told her our private consultant had never mentioned using PECS for communication and that we had been using photographs with magnets for a visual schedule and a choice board. The SLP then told me that she wanted to call this private SLP so she could discuss my son's needs. I considered her request: It would cost us money for a telephone consult and I was also a little concerned that she would tell Cynthia she could no longer work with us without PECS. I refused to give her the telephone number. This made the SLP mad. She told me that there could not be two speech programs and that there had to be one person in charge, not two. She announced she would be going on maternity leave in the Fall and my son would be placed back on the waiting list. Once she returned from maternity leave, his file would be reviewed and speech appointments scheduled, according to the priority of all the children then awaiting speech therapy. She then smiled and said she would be gone for *only* six months and it would "go by fast." I think she was trying to comfort me but I told her that was exactly what I was afraid of: our son waiting to learn as time slipped away. I started calculating: she was about seven months pregnant and would not be going on maternity leave until the Fall... it was now August... six months from October would be March which was eight months from now and then there was no guarantee he would immediately begin speech therapy. We could be waiting a whole year before he was seen again. It was simply too long. I begged her to reconsider putting him back on the waiting list. She told me, in no uncertain terms, there were lots of other children who needed speech therapy and the department needed to conserve their limited resources; they needed to prioritize their patients and work with the children who could most benefit from speech therapy. I thought "Is she saying my son wouldn't benefit from speech therapy? He already was progressing in his home program!" I told her I thought we had wasted our time that summer with the assessment because in six months' time (or a year) my son would be so much further along and we would have to do the assessment again. I had been given false hope with these appointments and I didn't see the logic in her plan.

The SLP paused and gave me a thoughtful look and then she reminded me my son was autistic and waiting several months to begin speech therapy wasn't going to make any difference for him; he would probably never speak and I needed to come to terms with that fact. I challenged her and said Cynthia Howroyd disagreed and that we would continue with our goal of teaching my son to speak during her absence. She then gave me an ultimatum: If I wanted to get the free hospital speech services I needed to choose to follow her advice. She was not prepared to work in conjunction with another speech therapist because she wanted to be in control of his therapy. If we were still using Cynthia when she returned from maternity leave our son would remain on the waiting list. This SLP would not see him until we agreed to her course of action. She would be in charge or she wouldn't be involved. I was in shock. I thought then -- as I do now -- that two heads are better than one and the more heads, the better. Every professional has something to bring to the table. It takes a village to raise a child and it would take an entire team of people to help my son.

I asked her if she could give me advice or direction on what to work on with my son while we waited for her return. She refused, saying that unless she was directly supervising his speech therapy during monthly visits she would not give me any 'homework.' I would have to wait until after her maternity leave before starting any therapy. I begged her with these words: "Teach me so I can teach my son." The SLP was unswayed by my pleas: There would be no more free speech therapy unless I did as she said. I looked at my son, crawling around on the floor, sucking on his fingers and visually stimming on a toy. I desperately wanted her to help him but it was a power struggle I could not win. Something inside me broke. There seemed to be no air in the room and I was having trouble breathing. My hands were shaking and tears welled up in my eyes. I said in a voice raw with emotion: "You remind me of my parents' dog who spends her days pissing in the four corners of the yard so every other bitch in the neighbourhood knows that's her territory." The SLP sat back in her seat and gave me a disgusted look. Through curled lips she asked, "Why are you telling me this?" I stood up and said "Because there is a powerful smell of piss in this room and we are never coming back." I picked up my son and left without another word or a backwards glance.

As I walked through the corridors of the hospital I was sobbing. My son was trying to run away. I scooped him up again and carried him, kicking and screaming, outside to my vehicle. I strapped him into his car seat and sat down on the curb with my cell phone. I dialed my husband's work number. When he answered I could barely speak. Finally I choked out what had happened. We would not be receiving speech therapy from the hospital. She had thought our son was a low priority. I had lost my temper and behaved rudely. I was oblivious to the people walking past me on the sidewalk as I continued lamenting about the unfairness of the situation and the cold realization that some people -- powerful people -- could refuse to help us. My son was not important to this SLP because my son was just another autistic child with a poor prognosis. As I spoke to my husband I could hear my son screaming through the open door. I could taste the dust from the road in my mouth. We had a choice: do as this SLP wanted and risk jeopardizing our son's recovery or go against her wishes to prove her wrong, at great cost to both my husband's wallet and our son's progress. I hadn't wanted to argue with her or anyone. I had made compromises and been polite with almost everyone we encountered in this journey. I realized now that nice only got me so far. Nice was not going to help my son. When the water was rough and the boat was in danger of capsizing, I needed to fight or we would surely drown.

Adjusting the Ratio

The private SLP we had hired was an invaluable resource. She had done ABA programs in the past and had extensive experience teaching language to autistic children. She explained how our son needed to learn more non-verbal social skills as well as actual language. These non-verbal social skills were things like social referencing which occurred when a child spontaneously looked to a parent for direction or assistance. Our son needed to learn how to take turns and read body language. He needed to learn how to request assistance as well as tangible objects.

I had already scrapped the 'look at me' program since it seemed so artificial and unnatural. Cynthia suggested some alternative activities to increase eye contact: swing my son in a blanket, with his head exposed, then stop. When he looked around to see why he was no longer moving, say his name and when he looked at me tell him 'good looking' and swing him again. Another one was tickling him while he lay on his back and I hovered over top of him. I would pause before tickling him and wait for him to look at me, saying his name if necessary to command his attention or tapping my hand beside my head at eye level. When he looked I would compliment him on 'good looking' and tickle him. I started another routine too: When we were giving him toys I would hang on to them while he tried to free them from my hand. I would say his name and wait for him to look in my eyes before releasing them. Sometimes I would raise them to my eye level as a further prompt. When he would look in my eyes I would tell him again 'good looking' and give him the toy. I extended these 'eye contact' programs to include all kinds of silly physical interactions such as airplane rides (where he was balanced on my feet over my head) and the 'human slide' (where I would raise him up on my legs, above my head and hold him there with my arms until he looked at me and then I would slide him down to my chest). It was the same formula: start the activity, pause and wait. If he didn't spontaneously look then prompt by saying his name or moving my eyes into his field of vision until he looked. He found these programs fun and his eye contact began developing naturally. He was learning and so was I. Therapy is suppose to be fun. As Lovaas once asked: "If the the therapist isn't having fun, how do you think the child feels?" Slowly I was learning to play like a child and to make myself a reinforcing presence, not just a stern task master.

Cynthia suggested a 'communication bag' which was a small drawstring pouch filled with various small toys that my son found interesting but had difficulty manipulating on his own. The idea was to create a situation where he had to ask for help and interact with us to get the toy to work (called 'communicative temptation'). Off I went to the dollar store to buy things like 'pop up' disks that had to be inverted first before they popped, spinning tops that had to be wound onto a shooter, egg timers filled with sand or coloured water, a rain stick, wind up gadgets, pull-string vibrating stuffed toys, hopping frogs, a ball on a long elastic wrist strap that is thrown but remains attached to the arm so it bounces back, a paddle with a ball attached to it, a party horn that unrolls with each blow, a ball that lit up when bounced, stress balls that when squeezed bulged in funny places and several other bits of junky plastic that would normally be found in a birthday party loot bag. I would change up the contents to ten different items each day so that my son had novel items with which he was not familiar but still found interesting. The goal was for him to ask for help by examining the object and then handing it to us to ask for help. We began working on the word 'help' which sounded like this: "haa-pah." We would go through the bag, one item at a time, making various single word descriptions and complimenting him on his efforts to speak, look in our eyes and take turns. I called it a 'stim bag' -- they were all toys my son found visually stimulating and it was meant to stimulate social interaction and language.

Cynthia also suggested I work on one target skill per program. Up to this point I had been teaching him several skills from each program altogether. In a regular ABA program the therapist usually teaches one target at a time (called a 'mass trial') with several repetitions each sitting and once the child has 'performed' correctly 9 out of 10 times in two successive sittings, that skill moves on to random rotation. Random rotation is when the child is asked to perform several different tasks within the same program or skill set (such as touching his head, waving his arms and stomping his feet in a gross motor imitation program), all of which have been previously 'mastered' when asked separately in the mass trial phase. If the child gets those correct at least 90 per cent of the time in the random rotation phase (which would be three times in a row in three different sittings) then it is considered a mastered target. These mastered targets would be used as the 'distractors' in future random rotation trials of other targets within the same skill set. As complicated as it sounded, it was an easy formula to follow: choose a skill and mass trial it until my son got it right 9 out of 10 times in a row, two days in a row, then ask him to demonstrate that skill again in three more sessions along with asking him to demonstrate other skills he had already shown he knew. I had been doing random rotation of multiple targets from the very beginning in an attempt to teach my son several skills at once. No wonder he was having such difficulty remembering what to do! Why hadn't I thought to do this before? I chastised myself for my stupidity but was exceedingly grateful that Cynthia could fix my sequencing of individual skill mastery. With this change in programming fundamentals, my son began to learn at an increased rate. He was mastering targets every few days and we were quickly moving on to the second tier of imitation skills, where we combine different imitations into a string of actions he has to perform.

Next we focused on teaching turn-taking skills more effectively. We had a small covered ball pit in our kitchen and we modelled saying "my turn" as we dropped ball's into the top opening. We dropped pennies in a bucket of water, the flips and turns of the pennies as they descended visually pleasing to my son. We threw balls of socks into a laundry basket. Any repetitive and fast-paced physical task with a minor built-in reward was a good option. We dropped marbles down tubes and watched them roll out the other end. We shovelled sand into a sieve and dropped rocks into an empty water cooler bottle. I realized my son greatly enjoyed visually stimulating toys and combed the clearance bins to find as many as I could. I purchased a ball pounding toy where we took turns using a hammer to pound balls into the opening and then watching them roll down a series of glassed-in slides. My son didn't like to share that plastic hammer either but he was no longer hitting people with it.

We set up a visual schedule, using hand-drawn pictures. I explained about the Velcro and she suggested using small magnets instead. The visual schedule could attach to our metal fireplace surround. I took photographs of the different activities we would do in therapy: the blanket, the stim bag, my hand for tickles and so on. I reasoned the photographs would provide a clearer understanding to my son. I had to take the film to a photo store to be developed. This was in the days before digital cameras and home printing. I often wondered what the developers thought of the hundreds of photos I took but resisted the urge to explain. I bought a laminator so the photos would be more durable with continued use. I learned about choice boards too and placed laminated photos of all his preferred videos in a binder. He would leaf through the binder looking for his choice and then bring it to me, saying 'pah' or 'haa-pah' so that I would turn on the video. I was thrilled with this development: previously, he would stand in front of the television, picking up random VHS cases and tossing them aside while he looked for the one he wanted. Often he would become frustrated and I would have a huge mess to clean up when he was finally successful. These small adjustments were making our lives, both in therapy and in life, run more smoothly.

Cynthia's greatest benefit was in setting up a vocal imitation program. She told me that we should teach the vowel sounds first and taught me how to place my hands or fingers around my face to help demonstrate to my son how to make the sounds. She explained the positions or the tongue, lips and jaw in making the sounds. She also suggested using a mirror so my son could see how he made the different facial expressions. For a boy who was limited in imitation skills, he couldn't tell if his face was doing the same thing as mine. Once we began using the mirror, he could better estimate what he should be doing. Again, I felt stupid that I hadn't thought to use a mirror to assist his efforts. I used the spin tops as reward for each attempt he made. He was fascinated by how they continued to rotate, the graphics on the top changing as the top slowed. He became very focused, learning to say all the long and short vowel sounds quickly. I taught how to do them to both workers and we practised them all the time. Soon he would be starting consonant sounds and then learn to combine them all to make meaningful words - or at least approximations of words. These one syllable combinations of consonants and vowels were called 'phonemes' and once he could learn to imitate these individually combined sounds we could start putting them together to make words. This was the process we used to teach him his first 100 words. It would take a long time and a lot of spin tops.

Our son was beginning to use 'pah' regularly when he wanted something opened (gate, fridge, a toy box) and 'bah' for bubbles or a bottle and 'dah' for down. He was understanding that language was a vehicle to get his needs met and he was trying hard to use it. Most importantly, he was using his verbalisation in a meaningful way. He was communicating, if not yet speaking words. Sometimes he would become very frustrated and scream or stomp his feet and hit me when he couldn't say a sound. Years later he would tell me that he remembered those times and his frustration came from having the sounds in his head but not being able to make his mouth say them. I wish I had known then how hard he was trying and how difficult the task was for him. I was impatient for him to speak and did not take the time to understand and comfort him in his struggles...yet another example of my failings as a therapist -- and a mother for that matter.

The other invaluable thing I learned from Cynthia was finding my own voice to express my own needs. I asked her what she thought of his female worker (the only one she had met). She hesitated and then said that she felt she lacked the proper skills and intuition to do this kind of work effectively, that surely I could find someone better suited and that prior experience was not always a good thing, especially if they had learned improper techniques. I decided I wouldn't have the worker return after her wedding. She hadn't given me a re-entry date yet anyway as her honeymoon plans were still not firm. Cynthia told me I was a natural at therapy and had great intuition when it came to behaviour modification. On top of that she said I was creative in choosing activities and materials and was obviously highly motivated to help my son. Whether she truly believed this or felt that I needed a pep talk didn't really matter because the result was the same: I was feeling unsure about my abilities so these words helped to bolster my confidence and motivate me to improve my abilities instead of wallowing in my past mistakes. Like a rower learning to co-ordinate her strokes, I was paying better attention to the mechanics of the process and the efforts of my crew members.

Our second hospital speech appointment arrived. I was excited to tell the SLP about the progress we had made with the private consultant. I had found a different entrance into the hospital so we could avoid the hot and noisy walk. We arrived on time and happy. However, once my son entered the SLP's office his demeanour changed: he remembered the visual schedule and the Velcro. As soon as he saw it he climbed under the table. The SLP had new toys and we managed to coax him to sit at the table. The testing began with play breaks between sets. His extra time in therapy had improved his attending skills but not his understanding of language -- or his tolerance of Velcro. Again the session ended with him in a full blown tantrum and poor test scores. We didn't have time to talk because he was loud and out of control. She told me she would call me with the next appointment so she could finish the testing. I hadn't had a chance to tell her about our recent successes. I left feeling disappointed but hopeful that in another month my son would be that much further along. I felt bolstered by the fact we had Cynthia Howroyd to help us. She could help me co-ordinate the programs and workers so that things would run more efficiently. She could assess when someone's timing was off and call out to that rower to adjust their ratio, to get in sync with the pace and the program. It was going to be smooth progress now!

Finding our Rhythm

While I was becoming more proficient at writing programs to meet our son's immediate learning needs, I was still spending a great deal of time researching. There was just so much both of us needed to learn. Like a child who first learns to crawl, then creep, cruise, walk and run, I needed to ensure my son learned each skill in proper sequence or he would stumble. A lot of the programs had become second nature to me now and I found myself in 'therapist mode' more often than 'mommy mode.' I stopped being his mother -- wiping tears, kissing boo-boos, making him happy -- the day I started doing therapy. I could not turn off the mind set when a therapy session ended. I continued to place demands and deliver (or withhold) rewards for the remainder of the day. I was constantly prompting him and engaging him and preventing him from retreating back into his own little world. I didn't always make it fun (because I didn't feel like it was fun). I know better now. Typical children learn through play; it's not work for them. My son's learning was all work, all the time.

I was beginning to ignore our baby daughter in favour of our son. It was not a conscious decision but a few months later I realized I had done it. It's the reason I missed the early signs in her behaviour. Our daughter had recently had her first birthday. I bought a birthday cake and my husband and I sang 'happy birthday' and blew out the candles. Neither child ate the cake. Our daughter was not interested in opening her present and refused to wear her party hat. She was walking now and had the annoying habit of putting everything in her mouth. Since our son ate almost nothing, I welcomed the opportunity to feed a child who was game to try anything. We had two high chairs now, one for each child and they would sit side-by-side at meal time, our son eating fistfuls of shredded marble cheese while our daughter ate from all the food groups. Her eating habits were a great role model for our son. She did not like a sippy cup and still preferred to drink out of a baby bottle. I reasoned that I could not expect her to give up the bottle when her big brother was still using one. I left that milestone for another day.

Our children took baths together and seemed to enjoy splashing in the water. I used that time to sing songs and label body parts ("I am washing your foot... now I am washing your other foot"). When I discovered bath crayons at the toy store, I was excited. I began drawing pictures on the tub surround despite the fact that I lacked artistic ability. I drew child-like versions of animals, trees, people, vehicles, houses and shapes. I would repeat the name as I drew, trying to direct the children's attention to my scribbles. The kids were more interested when I blew bubbles. I would comply as long as our son made the 'bah' sound first. Our daughter was almost mute. She was subdued most of the time. She laughed like a baby pterodactyl whenever we tickled her or said 'boo!' She preferred to play with pop-up toys or leaf through books while sitting in the sunbeam that streamed across the family room carpet. Often the nanny took her for walks in the stroller or for play time outdoors while I worked with our son. Our daughter was what people call an 'easy baby.' She was low maintenance and undemanding, except when she was hungry. This was a very good thing because I had my hands full with our son.

The one stumbling block was the lack of response to our job posting. My husband had heard about a temp agency that specialized in special needs services so he called to inquire about hiring people through them. The company had the word 'volunteer' in its title and they had ads in the newspaper asking for people who were willing to volunteer a few hours of their time to provide respite care for families with special needs children. We reasoned that if these people were already experienced and had an obvious interest in working with children, then that was the type of employee we wanted. We could teach them everything else they needed to know. The director met with us at my husband's office. She explained that they had workers who would come to our house to look after our son but that it was not free of charge. We liked the idea of paying for it: then we could have demands and expectations as to quality of work. When people are volunteers then they are the ones in control, deciding what they will and will not do. The director told us the clock started the minute the worker left their office to travel to our home. As well, we would have to pay mileage. We thought these extra expenses were silly: We lived within the city limits and the distance was minimal. These expenses were not negotiable we were told.

We explained that we were looking for someone who could help me work in our son's ABA therapy program. She did not know what that was but told us she had several employees who had experience with autistic children. To this day I do not understand why her organization has the word "Volunteer" in its title because there was nothing voluntary about the employment arrangements. It was an entirely 'take it or leave it' proposition. She would decide which persons were best suited for the job, despite her complete lack of understanding about our son and ABA. She would tell us what hours they would work and she would expect payment up front, at the first of every month. Should we be unhappy and wish to terminate her services, we would have to tell her at least a month in advance or pay a severance penalty. Despite our reservations, we agreed to these terms. Our job ad hadn't generated any interest so we had to take what we could find.

The director sent us two resumes but it really wasn't a choice: The first candidate was a grandmother and retired high school teacher. We chose the second option, a twenty something year old man who worked as a 'behavior interventionist' during the school year. He also had a university degree, a general B.A. but still, it was better than our other therapist's education. I wasn't entirely sure what 'behavior interventionist' meant but it sounded professional and somewhat related to ABA work. I would find out later that these school positions were a variation of Teaching Assistants who spent a few weeks in a classroom to set up behaviour plans for difficult students before moving on to another school. Their qualifications were limited and their education was often received through in-service professional development days.

The new worker arrived the first day late and unapologetic. I found out later that the 'start time' meant it was the time the worker would leave the office, not the time he would arrive at our house. He drove a new red Volkswagen Beetle with red tinted windows of which he was very proud. He invited my son outside to look at it several times during that first session. I suspect, given the amount of commuting time we were charged that he enjoyed taking leisurely drives in residential neighbourhoods. He wore more jewelry than I did and he was very energetic. He did not take direction well. I explained the programs to him and together we went through the session, with me demonstrating all the programs. As much as he did not seem to grasp the details, he had excellent rapport with my son. He treated my son like a regular child and was very enthusiastic during playtime. I knew that I could not leave him to do programming unsupervised as he would undoubtedly choose fun activities instead of sticking to the program book. He was very much a free spirit and wasn't the least bit interested in ABA protocol and procedure. He treated the time as a babysitting gig. I always felt like a killjoy, reigning in the horseplay and carousing, reminding him that there was work to be done. He was very personable and interacted so well with my son during play time that I thought it beneficial that he stay on -- not so much as a therapist but as a playmate. I reasoned that my son was spending so much of his work day in the company of women (myself, the nanny and the other therapist) that a man could provide a new dynamic and role model. During our sessions, I remained in the primary therapist role instead of the prompter, often instructing the worker when to assist or to wait. When my son would begin to tantrum in the middle of a program in order to avoid the task, the worker would begin tickling him or roughhousing to get him back in a good mood. I told him to ignore it and to make my son physically comply because stopping would just reinforce the avoidant behaviour. I thought this would be an easy concept for a Behaviour Interventionist to grasp; it was not.

The day of the first speech appointment arrived. I took my son to the City hospital, winding our way through the basement corridors, following the little colour coded dots on the floor. We had to pass the boiler room and the laundry, both hot and noisy places. My son disliked these noises and became agitated, trying to run back from whence we came. I struggled to keep him moving forward, dragging him along or trying to carry him despite his kicking and screaming. We finally arrived at the speech department and sat in the waiting room. Fortunately he was quiet by the time the SLP (Speech Language Pathologist) came to collect us. I filled out a lengthy questionnaire while we were waiting. It didn't take me that long: most of my answers were "no" and "he's autistic." I found many of the questions redundant, as if they had merely rephrased them in order to ensure parents were giving consistent answers. The SLP was a lovely woman, a few years younger than me and dressed in scrubs. Her office contained great electronic toys that became animated when she pushed a button. She had set up a visual schedule for him to follow. It was the first time I had seen one. She had placed several cartoon-type pictures of different activities my son would be doing in a long vertical strip on the wall. As he completed each activity, she would pull it off the Velcro strip and place it in an 'all done' envelope. I thought it was a pretty slick invention but the only problem was my son hated the sound of Velcro being ripped apart. We had problems with shoes for that reason. My son didn't like to put on his shoes if I pulled the Velcro fasteners apart. I would have to get them ready first, then go find him to put the shoes on. So, as I sat behind my son I could tell he was bothered by the stiffening of his back each time she removed a picture. By the time she reached the fourth activity, he was exhibiting some pronounced non-compliant behaviours. He was climbing under the table, throwing the testing materials on the floor, turning his back to the SLP and running for the door. He didn't want to finish the activity because then she would rip off that Velcro'd picture. The SLP requested I manage his behaviour and 'help him' co-operate. I suggested we take a break or stop using the schedule. Neither were options. The session was an hour long and there was a lot of ground to cover. We would have to gut it out. I made him sit but couldn't make him comply. He was being tested and needed to independently demonstrate what he knew. He refused. He failed the test -- or at least the portion she was able to complete at that session. When time ran out I asked her what advice or direction she could give me in order to help my son. She said she needed to finish the testing first. I told her we were doing ABA. She didn't know what that was. I explained, quoting the statistics on recovery. She didn't know what that was either. I felt a little uneasy about her lack of knowledge, especially since she was the one and only SLP at the City hospital who worked with young children, especially autistic children. She had been highly recommended by the president of the provincial autism society whose own son had been seen by her. I asked when we could come back. She gave us an appointment for the following month. When I expressed my disappointment about the wait time she shrugged and said that was the best she could do. She was busy with lots of other kids who needed to learn how to talk too. She delivered us back to the waiting room and bid me goodbye. There was nothing left to do but take my son home and try to teach him myself.

I had bought lots of books, googling "speech delays" and searching the websites listed. I knew about creating 'communicative temptation' and speech drills but I needed to know how to elicit the sounds. Which do I teach first? What are the mechanics of speech? If I wanted to become trained as a Speech Language Pathologist I needed to go to university for five years. I didn't have five years to learn how to make my son talk because my son didn't have five years to wait. Other kids his age were telling stories about their trips to the park and tattling on their friends at daycare. My son was saying 'bah' and 'pah' and 'dah' and a lot of 'nah nah nahs.' We needed professional help so I did the only thing I could think of: I called the secretary of the provincial association of Speech Language Pathologists. After I explained my predicament, she was kind enough to fax me the list of all SLPs registered in the province. I started calling them, trying to discover if any of them worked privately. Most were employed by hospitals or the school system. I happened upon one name: Cynthia Howroyd. She worked at the Stan Cassidy Center for Rehabilitation in Fredericton, 200 kilometers away. She did private consulting and was willing to travel to our city. She could come the following week. We would have to pay for her travel time as well as her hours spent at our house. It was a bargain at any price.

Both workers were coming now for two hour sessions, on alternating days and I was filling in the mornings or afternoons alone. We had begun working on object labels in one-on-one time as well as using the Discrete Trial Trainer. I had gone to the dollar store and purchased buckets of little plastic animals. We would place three in a row in front of him and ask him to touch the one we named. Sometimes he touched all three, lining them up carefully before choosing his response. He was copying some oral motor actions too. He could bite, purse his lips, air kiss and blow -- provided of course we demonstrated it first. He was sitting for longer periods now but still on the floor. He didn't like the new table I had purchased and would pitch a fit whenever I sat him at it. He was even learning how to do some actions with just his fingers such as a thumbs up or holding up his index finger in the 'we are #1' sign. He seemed to be enjoying his time spent in therapy often laughing or smiling when I bounced him on my knee or he received a toy. He could bang a drum, put a block in a bucket, close a lid -- all targets in our 'imitation of actions with objects' program. We had started a program called 'following verbal instruction.' I was teaching him simple things like 'turn off light' or 'clap hands' -- things I knew he could already do physically. We would have to demonstrate the instruction several times and then prompt him repeatedly before he learned to do it on his own. Still, he was learning and the list of mastered targets was growing.

Cynthia arrived for the first consultation. It would be an all day session. She was a tall woman with short red hair, wire framed glasses and a quick smile. When I opened the door, she immediately bent down and said hello to my son. She was the very first professional who had ever greeted him. He stared back at her and then ran away. She asked me lots of questions and interacted with my son while he played with some of his therapy toys. She wanted to see what he could do so I had arranged for his worker to come. Cynthia video taped the session, including a portion where my son hit me in the face with his plastic hammer. I had been working on him choosing between two objects by pointing at the preferred one but I had interrupted his routine of pounding pegs into a peg board. He didn't like it so he hit me with the hammer to make me go away. I didn't. So he went after his sister who was toddling around. I was prepared for this: Often he would make her cry so I would attend to her needs and leave him alone. I had gotten wise to this task-avoidant behaviour and had learned to block him, physically restraining him and making him complete the task. For the next hour of the video my son continued to scream, knocking over puzzles, pushing over the play pen, punching at me. At one point on the video I am ignoring him and holding my one year old daughter at chest level. He grabs hold of her foot, trying to pull her out of my arms. I struggle to get free, pushing my thumb into the tendons of his wrist to loosen his grip. He falls to the floor and begins kicking at my legs, trying to knock me off my feet. The worker stands there, watching the scene unfold, doing nothing to help me. Eventually he calms down. The next scene shows him laying on my lap drinking a bottle. Finally there is some evidence of therapy: The worker is demonstrating different imitation commands and my son is still cranky but complying. I am sitting behind him, making him go through the motions until the behavioural momentum builds and he starts complying on his own. As we cycle through the different mastered targets, my son hesitates at one command when the worker demonstrates the action in a novel way, something he has not seen before. She repeats the command and flutters her fingers again. He raises his hands in front of him, hesitates again and then he touches his head. Whenever I watch this part of the video I cry. My son's earliest success in therapy came the first time he touched his head. It was a watershed moment that told me I could do this work. I could find the way to fix my son. Now, when he was unsure of what to do he touched his head, perhaps remembering that not so long ago, this act of touching his head was a very good thing and made his mommy so very happy. I saw in this video a boy who was trying to learn, who wanted to succeed in the world around him. No amount of toys or tickles could give a child this kind of internal motivation. I had to instill this same kind of drive into my crew, to steer the course and set the pace. We were still finding our rhythm and I needed to be a better coxswain.