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.

Saturday, August 21, 2010

A word from the first mate

When my son was first diagnosed with autism, I spent many hours searching for answers and information on a subject I knew very little about. Not that it mattered at the time but it has occurred to me since that I rarely came across information from the father's perspective. Looking back, I think it would have been useful and perhaps comforting to have had that. After speaking with my wife, she has agreed I should share my perspective, the mistakes I made and some of my most vivid memories. In a way this is cathartic for me but it is also a bit painful because I will be reliving some difficult memories of tough times and admitting to some of my shortcomings. My hope is my experiences will be helpful to fathers going through what I did.

For as long as I can remember, I have always wanted to have children and my wife's first pregnancy was a joyous time for both of us. There's an old Italian proverb that says "You don't become a man until you make a boy" and when I found out we were having one, I couldn't have been more thrilled. A trip to a sports store was suddenly not complete without taking an inventory of all the great equipment I could buy my little man: a baseball glove, hockey skates, golf clubs. I fantasized about taking him to soccer games, tying his hockey skates or putting my arm around him to console him after a tough loss. Little did I know then that it would be years before I would be able to enjoy any of these common paternal pleasures.

They say that autism cannot be diagnosed before the age of 18 months but I can remember distinctly my wife saying to me not long after my son was born that there was something wrong with him. I brushed it off, chalking it up to his gender and premature birth. I reasoned he was still catching up. I said these things despite the fact that I was fairly obsessed with the milestones that all parents look for in their young children. Unfortunately, this became a pattern that repeated itself many times in the next year: my wife would express concerns and I would dismiss them. My son had a habit of spinning things and I made the comment to my wife about how good he was at spinning several pot covers at once on the kitchen floor. She said that it was because he was autistic. She said it matter-of-factly and it irritated me. After many other similar conversations during our son's first year of life, I finally told her she was imagining things and to stop talking about it. What I was inadvertently doing was making my wife feel alone and my only excuse is I truly didn't know any better.

I wish now that I had listened more carefully to what she was trying to tell me. Not that I didn't see the signs but denial "ain't just a river in Egypt", as they say. We had a nephew and good friends with a son. I couldn't help but notice that not only did my son not reach certain milestones on time, the gap between his development and these other boys seemed to be widening. But by far the most disconcerting moment I had in my son's first year was on the day of his first birthday. Is there any milestone that a parent looks forward to more than that of their child's first birthday? We went all out: streamers, balloons, a big cake, noise makers. You name it, we had it. I came home early from work completely jazzed to party with my son. So we sat him in his high chair, put a party hat on him and sang happy birthday at the top of our lungs. I was waiting for his laughs and giggles but none came. He didn't open his present and wasn't interested in his cake. In fact, he stared into space the whole time and no matter what we did, he wouldn't look at us and he wouldn't smile. I'll never forget my wife's repeated pleas of "Please smile honey!" so she could get a picture of this momentous occasion. I remember feeling very disappointed but in retrospect this was the point where I should have realized my wife was right and something was wrong.

It wasn't until I came home to my wife, son and Paula, from Early Childhood Stimulation, that I came to accept that many of the dreams I had for our son might not come to fruition. I knew about the appointment my wife had made with this specialist and why. When I walked in the door, the three of them were sitting in our living room and after some initial pleasantries, my wife asked Paula to tell me what they had been discussing.

"Your son is likely going to need help for the rest of his life - he may be autistic."

I felt like I was punched in the stomach. I don't mean that figuratively - I literally felt like I had been punched in the stomach because I lost my breath and felt physical pain at that moment. When I was in university, I worked in an institution that had severely autistic adult residents. My son was autistic? He couldn't possibly be like them. I mumbled some questions but she said she wasn't qualified to give us a formal diagnosis and we should immediately seek a professional opinion and have our son assessed. I'm an educated man but I have yet to find the words to describe the fear I felt at that moment. The only analogy that I can think of is trying to describe to people who don't have kids what it's actually like to have them. It is difficult if not impossible. All I knew was that our lives had been terribly altered and we needed to do something.

We got a referral to a pediatric neurologist in a neighbouring city, my hometown of Saint John. He seemed like a nice man and we watched while he observed our son and asked our son to stack three wooden blocks and draw a line on the back of the referral form. After a few minutes, he looked up at us and said our son was definitely severely autistic. "What do we do?" we asked. "There's not much you can do." He said this with a smile on his face. Then he looked at my wife and asked a very interesting question: "What are your expectations for your son?". I don't think he meant to be condescending but when I looked at her, I immediately knew that this made her very angry. They say that you should never approach a mother bear when she is with her cubs. It would be fair to say that when it comes to our children, my wife has a similar temperament. I mean this as a compliment. When he asked her that question, I literally leaned away from her so as to avoid the shrapnel from the impending explosion. My wife didn't miss a beat and quietly replied through gritted teeth, "I want my son to grow up to be the Prime Minister, what do you want for your children?". He chuckled at her response and I feared for his life. My wife set the tone that day for the fight we had just started and I love her for it. We would be the ones who would set the expectations for our children and no one else. The conscious decision to do this was a critical element in our success. We believed that our children would rise to the level of our expectations and no further so we had to set the bar high.

I am a financial advisor by trade and am very fortunate that I make what most people would consider a very good living. But I don't know many people who wouldn't notice an extra $50 or 60 thousand dollars going out of their bank account every year. I have always practiced what I preach to clients: don't spend more than you make. It was very stressful to be put in a position of having negative cash flow for several years. I don't regret a single penny of what I spent but I am quite literally still paying for the recovery of our children. When the outlay of therapy costs exceeded $250,000, I stopped counting. I simply could not bear to know how much more it was going to cost us financially. I remember seeing my wife come home with several bags of toys for what seemed to me like the tenth day in a row. I asked her "Is all of this absolutely necessary?". She pointed her finger at me and said, "I'll worry about recovering the kids - you worry about paying for it." I never questioned her again after that (the whole mother bear thing). At the time I found it overwhelming but the end result is I may have to work an extra few years before I can retire, which is just fine by me. It was, by far, the best investment I have ever made (and I've made some pretty good ones). What breaks my heart is most families don't have the financial resources we have. For many of them, the decision between keeping their house or paying for therapy has to be made. This is nothing less than an atrocity and disastrous for our society because the short term costs to any government to help families recover their children is far outweighed by the future savings. In our case, our children would have needed teaching assistants costing a minimum of $50,000/per year x 13 years or $650,000. Our children would have been entitled to these services in our public school system. The costs would continue into their adulthood including long term care. Each of our children would have cost the government a minimum of $1 million dollars had we not invested in their futures. Instead, our children will grow up, get an education, get jobs and become taxpayers. I will never understand why governments in this country don't allocate resources to fully address this issue. It makes sound financial sense to me. I am still waiting for their thank you note, by the way.

If you have children, you might be wondering what kind of toll this would take on a marriage. I can tell you it is a high one. I've read where the divorce rate for parents with special needs children is something ridiculous like 70 or 80%. My wife and I have a very good marriage and we're not the type to "bottle things up", if you catch my drift. But when you are enduring a 24 hour a day 7 day a week stress-inducing siege, nerves get frayed and tempers get short. We argued and fought much more than we do now. In some ways, it may have been our way of relieving the pressure we felt. When the chips were really down, however, we were there for each other. When I was really down, she was there for me and vice-versa. We got through it one day at a time and I have no doubt that our marriage is stronger for it. I would never judge those couples who choose to go their own ways - we just never considered this to be an option.

I do not live my life in the rear view mirror but if I could go back and change one thing, I would try not to have been so angry. I was angry at everything: the money we were spending, the lost dreams, the lost freedom, the lack of help and resources we had. For me, anger is mostly a non-productive emotion. It affected my relationships and my work in a negative way. It didn't help that I'm not a patient man. Like most men, if I see a problem, I want to fix it. This was something out of my control except for providing the funds to do it. Most of all, I wish I had been more patient with my wife. When my wife complained I took it personally and thought she was asking me to fix things with immediacy. Things couldn't be fixed and this made me angry at her. All she wanted was for me to commiserate and support her in her struggles. She was under unimaginable pressure to recover our kids and I should have been more understanding. I should have listened and agreed when she said "life is not suppose to be this hard" instead of trying to tell her how to make it easier or complaining about how she was making my life harder.

I think the moment I recall being most angry was when my wife explained to me that we had two autistic kids instead of one. I exploded. "What the @$&%! did we do to deserve this? Are we bad people? Why us?" I raged. She looked at me and calmly said, "Why not us? What makes us so special as to deserve perfect kids? I don't know yet 'why' but I know there's a reason we're going through this." I pray that one of the reasons is we provide hope to families of newly diagnosed children. We didn't have that. People kept telling us to lower our expectations and I felt they were trying to "protect" us from being disappointed. I think this is a terrible mistake. We were already extremely disappointed. We set the bar high and never gave up until we reached our goal. I would hope all families would do the same.

Monday, August 9, 2010

Man Overboard!

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

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

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

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

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

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

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

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

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

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

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

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

Monday, August 2, 2010

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.