Monday, August 23, 2010

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.


  1. Missing your posts :)
    hope you will write the next chapter.

  2. Wow, I am so impressed and inspired by the tenacity shown here. I have 2 kids on the spectrum with PDD-NOS - my 5 year old is recovered and will hopefully remain that way through grade school and beyond, my 2 year old is currently doing the same therapies he had and will hopefully have the same outcome. Thank you for sharing - I am committed to keeping our "travels" open to others so we can all embrace this journey and not feel stigmatized.