The First Squall

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

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

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

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

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

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

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

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

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

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

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

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

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

Adjusting the Ratio

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

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

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

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

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

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

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

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

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

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

Open Water

I was feeling optimistic. We still needed more crew members but at least we were going in the right direction. The recent achievements of our son encouraged me to work harder. I had learned a valuable lesson: if we found things that interested him and incorporated them into his learning, he was much more likely to stay engaged. His interest in the Mr. Potato Head computer game had given me an idea: I had found a computer resource on the Internet called "The Discrete Trial Trainer" which had been created by the father of an autistic child. It was an interactive computer program that taught language concepts in the same way as we were teaching imitation. The program could be downloaded and came with a free one month trial. What did I have to lose?

Our son loved the DT Trainer and began using it daily. He would go to the computer desk, swing open the doors and turn on the computer. He would begin tapping on the screen and banging on the keyboard as he waited for someone to start the program. I was more than happy to comply. When the program started, the screen would show a picture of a certain animal or object and say what it was. Then the screen would change to a picture of three different objects and would ask him to pick the highlighted item. It went like this: "This is a horse." (picture of horse)... "Touch the horse." (screen displays a horse, a cow and a dog). He would touch one of the pictures on the screen and the therapist (or myself) would manoeuvre the mouse to match his choice. When he got it right, a reward screen would play. He particularly enjoyed the short video clips of fireworks or the animated snippets of nursery rhymes and children's songs. He showed his pleasure by placing his face directly against the screen, flattening his nose against it while he watched the video clip. I could change many aspects of the program, such as the frequency and duration of the reward, the particular target words or category and the type of question. At the end of a session, I could print out a summary which listed the items guessed correctly as well as other details such as duration of the program and response time for each question. It became a very useful tool in teaching our son object labels.

I noticed some other things about this program: when my son got an answer wrong, the teaching step of showing the picture alone and naming the item was repeated. When he got it right, he would be asked the question again but the picture would appear in a different location with different pictures (which I later learned to call 'distractors'). Sometimes he would guess wrong this second time, quickly choosing the picture that was in the same location as the last time. However, with repeated practise he began to scan the three pictures before choosing his response, thereby ensuring he chose correctly. I would put this technique to use when I began teaching object labels in his floor time teaching. After only one week of the trial I ordered the CD. It was the best hundred bucks I had spent so far!

This new computer program gave me added insight on what was motivating my son. When he was a baby I would sing to him but as he grew into a toddler, he appeared to be annoyed by it and would grab at my mouth to make me stop. I figured it was because I sang off key and butchered most of the melodies. Now it seemed he found songs entertaining again. I decided to try songs as part of his programming. The first song we tried was 'Ring around the Rosie.' He would hold our hands and shuffle around in the circle, watching our feet and waiting for the ending with a little smile on his face. When we would say "down" and then fall over he would chortle but remain standing. I would have to pull him down with me, telling him he had to sit down too. To request the song again, he would squat down and slap the floor then extend his hands for us to hold. As crude as this behaviour appeared, he was initiating play and requesting -- the beginning of social skills! While he didn't sing any of the lyrics or say any words, he was willing to hold our hands and move around in the circle with us. Every time we sang the song he remained as focused and engaged as I had ever seen him. I was more than a little self-conscious when singing in front of people but here I was belting out lyrics with gusto. A little positive reinforcement can go a long way! I swallowed my pride and went out to buy song and nursery rhyme books to expand my repertoire. I found an excellent one at Costco which included the lyrics and a CD. I devised a plan.

I had been reading about ways to elicit speech from a non-verbal child. Bottom line: I wanted my son to talk now and the speech appointment was still a few weeks away. One particular section of the text book had intrigued me: the speech and motor centers of the brain touch each other so when a person performs 'whole body' or gross motor movements the motor center becomes more stimulated and in turn stimulates the speech center. In plain English that meant by doing actions with a song it was more likely my son would learn to sing the song as well. Could it really be that simple? It was certainly worth a try. He didn't have any physiological problems that would prevent him from learning to speak so what was the harm in giving it a go?

I had also been reading about backwards chaining in some occupational therapy books. This technique is used to teach a multi-part skill, such as dressing: the OT helps the child with all but the last step, such as pulling the pajama bottoms past his hips to his waist and once the child is independent with the very last step then the help is taken away for the second-to-last step and so on until the child is putting on the pants all by himself. Backwards chaining allows the child to be successful (and therefore rewarded) every time so the motivation is higher with each successive attempt. I reasoned that we could teach the words to songs in the same way. If we sang the whole song, except for the last word and then waited for him to 'help himself' perhaps we could teach the rest of the lyrics this way as well. I knew it was a gamble but if the actions we were performing were vigorous enough to really get that part of the brain stimulated then perhaps it would be enough to 'prime the pump' for speaking.

I chose the only song he knew: Ring Around the Rosie. I thought it was perfect because the last word, 'down' was also one of the first speech sounds an infant makes (dah dah). I explained the plan to the worker and we tried it. When we paused the first time, my son looked confused. He began pulling downward on my hand. I remained silent, waiting. After a few seconds the worker blurted out "down" and fell to the floor. My son broke into laughter. I sank to the floor and considered duct taping the worker's mouth shut. I patiently explained to her again the idea of NOT saying the final word and to take her cue from me. She was concerned that he didn't understand and that his agitation in not seeing us fall down would cause him to no longer enjoy the song. I was willing to take that risk because whether my son learned to hate 'Ring around the Rosie' was a small price to pay if it meant he also learned how to speak. We repeated the song, much to the excitement of my son. When we came to the final word I shot the worker a look that indicated she was toying with her life if she spoke again. Her voice trailed off. Five seconds passed. My son was getting more agitated and pulling harder on my arm, trying to make me fall down. Finally after 10 seconds I quietly said "down" and sat on the floor. The worker looked confused. I told her that it was the same teaching methodology as the imitation programs we were doing: if my son didn't perform the correct response within a certain time frame, then we would prompt him to respond but not reward him for no response. We began the song a third time. This time I thought I would prompt him with the partial word "dah" and see if that would get him to speak as well but when I said it, the worker fell to the floor. "Not yet" I hissed at her but it was too late. My son had already been rewarded by the fall and was laughing and running around in circles. Again we sang the song but this time the worker was so confused as to what was expected of her that she neither sang nor moved. My son again became agitated, pulling at my arm and verbally protesting with his whiny 'nah nah nah' vocalizations. I said 'dah' quietly to him. After a few more moments of protesting, he looked at the floor and said 'dah.' I immediately repeated "down!" with genuine excitement and did my best dramatic prat fall. I pulled him down on top of me and began tickling him. He was happy but I was happier! My son had said his first word! He was almost two and half years old.

We sang songs every day, with the worker sitting behind my son, physically prompting him to perform the actions that I was demonstrating. When I was alone during therapy we sat in front of a full length mirror so he could watch himself perform the actions as I physically manipulated his body. We played the CD and sang along with the music. Once my son was sufficiently familiar with the song's actions we took away the music so we could start leaving out words. It wasn't always the last word we waited on because sometimes there was a more motivating part of the song. For instance, when we did 'Pop goes the Weasel' we would freeze at the moment of clapping our hands for 'pop' and wait for my son to fill in the blank. Sometimes he would clap several times before realizing that he had to make a verbal utterance before we would continue. Other times he would need to be prompted with the sound. Occasionally he would remember immediately and say the sound that resembled the actual word. At those moments, my heart would leap and my faith in his future would be strengthened.

I extended these verbal demands to other aspects of his life. When he was hungry he would go to the refrigerator and take out the cans of Pediasure and Similac to stack them on the counter. Then he would push me over to the counter. I put a lock on the refrigerator and cut off his ability to communicate in this way. I would stand beside him as he whined and tugged at the door and I would calmly repeat the word 'bubba' (for bottle). Eventually his hunger would get the better of him and he would say "bah." I would immediately give him the bottle. We locked the gate between the kitchen and the foyer and I placed several prized toys on the other side, in his line of sight but out of his reach. He attempted to climb the gate but it was entirely child proof; high, slippery and without toe holds. He kept taking my hand by the wrist and flinging it on the locking mechanism of the gate. I would calmly repeat "open" and wait for his response. The first time I did this we stood at that gate for almost two hours. It was 107 minutes of him pushing at me, jamming my hand on top of the gate and screaming. Occasionally he would abandon his attempts to reach the toys and run away, only to return a few moments later and try to scale the gate again. I remained standing by the gate. Each time he took a breath (and was quiet) I would repeat the word "open." Finally my son spat out the sound "pah." I said "open!" and quickly unlocked the gate to give him the toys. He was angry and frustrated. I was elated. I was quickly becoming accustom to ignoring his outbursts and maintaining the expectation of language.

I had also developed the habit of talking to him in short truncated sentences, leaving out all adjectives, articles, suffixes and prefixes. I stopped using pronouns as well. I wanted to make sure my son understood what I was communicating. I sounded like I was speaking to a dog most times: sit down, want bubba, open gate, stand up, all done, hands down, look Mommy, no touch, give toy. As well, I had incorporated hand gestures into the phrases, wiping my hands when I said "all done", patting the floor when I said "sit down", raising my palms upward when I said "stand up." I had read that autistic children were better at visual learning than verbal instructions so I hoped by simplifying my language and using visual cues he would understand my words.

I was developing patience, despite my desperate fears he wasn't learning fast enough to catch up. I was impatient for results and successes but it took hundreds of repetitions of the same sounds and activities for my son to first learn each small thing. Then he would have to practise these learned behaviours again and again before they became skills he could use on his own with consistency. I realized with weary determination that my son's therapy was exactly like rowing a thousand miles across open water: There was no other choice but develop a disciplined rhythm of constant small advances toward the destination.

All Hands on Deck

We needed help and lots of it. My husband started making telephone calls. The first was to the president of the provincial autism society. As luck would have it she lived in our city. She told him there weren't any therapy centers or specialists in our city and that the few experienced professionals lived elsewhere. She talked about waiting lists and lack of financial support and government programs. As she talked my husband couldn't help but notice how cheery she was. She sounded like she had a smile on her face. Perhaps it was the fact that misery loves company or she just had a naturally sunny disposition but the news she delivered didn't match her mood so my husband found the conversation disconcerting. We knew we could expect a two year wait before seeing a speech therapist at the hospital but he learned it was even longer to see an occupational therapist. She told him there weren't any organized committees or support groups either... and nobody was doing Lovaas ABA.

She did espouse on the virtues of the GFCF diet. When my husband told me about this treatment, I searched the Internet: GFCF stands for Gluten Free, Casein Free diet... meaning we were to feed our son no bread products made with wheat and no milk products whatsoever (casein being the milk protein). How could we do that? Our son's only source of nutrition was milk based: Similac baby formula, Pediasure liquid supplement, milk and shredded marble cheese. We had just succeeded at getting him to eat Arrowroot biscuits and dry Cheerios. Those were both wheat products. I read lots of testimonials from parents on the effectiveness of this diet but I couldn't find a single medical report or scientific study. It seemed like so much work with no guaranteed positive result. It didn't cure the autism but parents had reported increases in eye contact and interaction. Didn't ABA do that too? I had limited time and energy and didn't relish the thought of making every recipe from scratch with ingredients purchased at the one organic food store in our city. Especially when there was little probability our son would eat any of it. I put a pin in it.

Madame Sunshine also talked about vaccine injury. She said her son had been fine before his 18 month immunizations but afterwards had regressed in language and behaviour. Our son had had all his needles, on time and with full viral loads. We hadn't noticed any regression. He was distant and cranky from the day he was born. I remember nursing him and when our eyes met he would immediately squeeze his eyes shut, turn his head and begin to cry. It was as if somebody had stuck him with a needle. He did not return our smile -- ever. He only laughed when we were physical with him, when we tickled him or threw him in the air. He didn't play with toys but preferred to spin madly around in his Exersaucer, stopping suddenly and laughing with his head tilted up and his eyes rolled back obviously enjoying the dizzy buzz. He did not speak any words at all and never had. He watched his beloved Teletubbies and Blue's Clues videos silently. My 'name' was a particular gruff growl sound he made... it could have just as easily meant 'help' or 'get me out of the crib.' When he awoke during the night it was the only time he used it. Once he learned how to climb out of the crib he stopped calling for me completely, choosing to run up and down the halls screaming for half the night. All these behaviours were present before his 18 month needles. While this vaccine injury theory seemed alarming, I didn't take time to research it since our son's autism couldn't be changed by the knowledge. He had had all his shots, with no more boosters scheduled until the four year mark. What I needed to know now was how to change the present so I could change his future. Simply put, I didn't care how he 'got' autism, I just wanted to know how to get rid of it.

The most important part of the telephone call came near the end when my husband managed to get two names. There was a girl in the city who had autism training and was working with other kids. There was a mother in another city who was getting some funding. My husband called both. This girl was indeed available to work with our son. When I spoke to her she assured me she was fully trained by CARD (Center for Autism and Related Disorders) in New York City. She had worked in a neighbouring province (Prince Edward Island) where there was an ABA program for preschoolers.

When my husband called the mother she told him their worker was moving out west, to British Columbia or Alberta, both provinces with well established provincial ABA programs. She told him she received respite care funding through the government and used it to defray the costs of therapy even though it was designated as babysitting breaks for her. We didn't qualify for respite care funding. My husband was too good at his job of making money. When my husband discussed the unfairness of the income threshold with a social worker in the Department of Family and Community Services, she said that if we were on welfare we could get lots of services. I put a pin in that lifestyle change as well.

We had already hired a part time nanny, someone who could feed the baby and change diapers when I was in the middle of therapy. As luck would have it, she had grown up in the same small town as me, her parents and mine still residing there. She was -- and is -- a strong Christian woman who answered our newspaper ad without realizing it was me who had placed it. I believe God put that paper in front of her that day because Lugene was truly the answer to one of my many prayers. She was always positive, always ready to pitch in wherever it was needed. She had boundless energy and unflagging interest in the happiness of my children. Most importantly she kept the baby occupied while I worked with my son. Sometimes she stayed with both children while I ran errands. For the first time since our son was born I had a measure of freedom that comes with knowing your children are in safe hands.

We hired one of those rent-a-maid companies to come clean our house once a week. I didn't have time to scrub toilets. I was spending all my time researching programs and reading all I could about autism. My husband realized that despite the big picture goals, we needed to attend to the small details as well. He made that phone call and assured me it had nothing to do with my housekeeping abilities. I assured him it did but was grateful for the extra time nonetheless. I had so much to learn. A lot had changed since my days as a psychology major. I had graduated the year the Lovaas study was published. There were 15 years of information out there I hadn't read. I found myself regretting my decision to attend law school instead of finishing a master's degree in psychology, the first in a long list of 'should-haves.'

We had one other member of our crew: The provincial government had a program called "Early Childhood Stimulation" which employed individuals with university degrees in various child-related fields. We had been assigned a woman named Paula. She came once or twice per month for an hour to give gems of information on how to help our son. I loved her because she was a caring individual with great ideas and abundant resources. She brought toys she thought our son would enjoy, which I then reserved for therapy rewards. She was the first person to discuss reinforcement strategies and behaviour modification with me. She photocopied articles and left them for me to read. Every month we exchanged the toys and information for something new. Paula's greatest value came in her knowledge of the patchwork quilt of government services. She was the one who told us we needed referrals to the hospital's speech and OT departments and that we could ask to be put on both the "City" (English) and French hospitals waiting lists. While we wouldn't be able to get services at both hospitals, we would double our chances of being seen sooner by double booking. As well she told us that we could get the liquid supplement our son drank -- Pediasure -- through Public Health, provided we had a doctor's note saying it was medically necessary. This was welcome news since our son needed five cans per day to meet his daily nutrition quota and a case of 24 cost almost 50 dollars. We went through six cases per month. We mixed the sugary thick liquid with a can of 'Similac 2' concentrate and whole milk, both to lessen the sweetness and reduce the viscosity so it would flow more easily through a baby bottle nipple. Our son did not use cups or straws of any kind. He still drank from a baby bottle. We called our pediatrician and she agreed to fax a prescription to Public Health. I then called Public Health and ordered six cases which would be available the following month. We were not eligible to receive the baby formula under this program because our son was not a baby 'requiring' formula. We thought differently but our opinion didn't matter. Still, our food bill for his diet had been cut in half and I now had 300 more dollars every month to spend on ABA resources. Public Health and Early Childhood Stimulation were the only government programs we could access at this time. It was a drop in the bucket -- or more accurately a drop in the North Sea.

I typed up programs and put together a binder so we could keep track of what our son was learning. The highly recommended, greatly experienced therapist arrived for the first session. The first thing I noticed was her fashionable attire. The second thing I noticed was her perfectly manicured nails. The third thing I noticed was her poor grammar. The last thing I noticed was her therapy skills. I thought her voice was too lilting when she asked our son to perform a task so it came out sounding more like a suggestion than a command. She left the toy within his reach so he was distracted by its presence. Her delivery of the 'SD loop' (that is, the delivery of her command, our son's response and the presentation of the reward) was choppy, slow and inconsistent. She couldn't remember the exact way to demonstrate each action. I knew there would be a steep learning curve for my son but didn't expect there to be one for his worker.

Our son had learned certain skills: when you held out your hand and told him to "give toy" he would hand it over (most times). He had learned to hammer a plastic peg into a hole. He knew how to assemble gears which had rapidly become one of his favorite toys. It worked wonders as it had one central gear with a motor to which you added various other gears, all of which would spin. The sprockets had pleasing visual designs, made more psychedelic by each rotation. With each successive teaching trial he would earn a new gear to add to his creation. He would turn on the center gear and place his head at a slight angle to watch out of the corners of his eyes. He was now sitting for at least five minutes without a struggle and he seemed to be paying attention (but without eye contact). Occasionally he would disengage, his eyes taking on a far away look and his body going slack. We would wait for these moments to pass before returning to programming. One particularly exciting accomplishment was that he had learned how to point at objects on the computer screen. He greatly enjoyed playing a Mr. Potato Head game, as long as you were there to click the mouse where he was pointing. I toyed with the idea of getting a touch screen but I reasoned that would make the therapist -- or myself -- unnecessary. He was already spending enough time alone and this forced him to interact with us. I saved my money for other things.

During therapy I was seated behind my son, keeping him positioned on the floor and physically prompting him to perform the requested action by using my hands to move his hands or legs. He would not perform the actions independently. Sometimes when the therapist faltered in remembering how to do an action I would demonstrate it behind my son's back. She would have to repeat the command a second time with the correct action and I would scramble to get him to comply. It was slow going. Every time she would lean forward, her shirt would billow out, giving both my son and I a clear view of her bosom. She would often forget to fill in the data sheets. When we took a break, she would ignore our son and chat with me over her upcoming wedding or her weekend plans while I engaged my son in play. These awkward moments, inconsistent techniques and missed opportunities began to wear on me.

A routine was established and the weeks began to blend, the therapist coming three times per week and me filling in the hours in-between. She was getting married in the summer and would be unavailable for the month of July. I had read enough to know that my son needed many more hours of therapy. The books all agreed that at least 30 hours were required if recovery was to be within reach. We called the student job placement center and put in an ad for another worker carefully listing university education as a prerequisite.

My doubts about the therapist's qualifications festered. From everything I was reading, I thought that many of her techniques were not in line with the Lovaas teaching strategies. She used his name with every command. She was slow to praise. She used a lot of words when speaking to him and after delivering her command she would keep babbling to him instead of waiting for his response. She hesitated with every new trial. There was no flow to the process. She didn't seem to know the programs, even after weeks of doing them. If she had so much experience doing therapy why wasn't she more familiar with imitation programs? I questioned her about her education. She reiterated her CARD training. I asked her for the details. She hesitantly admitted that it was a weekend seminar for all government workers in the Prince Edward Island pilot project. She hadn't received individualized instruction and had had limited supervision during her work days there. All workers in the PEI program were following the same curriculum with this two days' worth of training. It was a boiler plate program with assembly line style delivery. I asked her if she had seen any children recover from autism. She shrugged her shoulders and said no but then again she had only worked in the program for a short time. I realized, to my horror, that this was the best there was in our city: A 20 year old with minimal education, few skills and no proper training. Other parents (including the local autism society president) had raved about her abilities. I sat there stunned for a moment thinking how this person was simply not good enough in my book. Her abilities just did not measure up. We needed someone better than me with my neophyte abilities to work with our son. I second guessed myself: were my standards too high?

And then it happened: the therapist sang "Do this" and touched her head with both her hands (sometimes she only used one hand). I reached for my son's hands but he had already begun raising them. I hesitated and held my breath. He placed both firmly on his head, palms flat against his hair, just like the therapist had done. I exploded in cheers and began hugging and kissing him. He fought me off so he could play with his promised toy. I ran to the telephone and called my husband. All my conflicted thoughts were washed away in a sea of joy. My son had learned to touch his head! It only took a month!

My conversation with my husband went like this:

Him: Hello?
Me: He touched his head!
Him: What?
Me: He touched his head! He touched his head!
Him: And that's a good thing?
Me: Yes! It's the first time he did it on his own!
Him: He touches his head all the time, doesn't he?
Me: No, not when we ask him to, he doesn't.
Him: Tell me again why that's important.
Me: Because he is copying what the worker is doing. He is imitating.
Him: That's great honey. I'm so happy. Um, can we talk about this more when I get home?
Me: Sure but this is a big thing. You should be more excited.
Him: Okay, I promise I will be when you tell me all about it later.

I don't blame my husband for not sharing my ebullience. He was at work when we did therapy, earning the money to pay for all these extra deck hands. We had made a deal: his job was to make money and mine was to spend that money to recover our son. He didn't recount to me the daily fluctuations in the stock market and I didn't tell him the ebb and flow of a therapy session. We had too many things on our minds. He made money. I spent it. Our son was improving. Enough said.

I was still on an emotional high the next day when we got a call from the city hospital's speech department. Our son was being given an appointment for a speech assessment in the upcoming month. I was overjoyed! Everything was coming together. Full steam ahead!