Finding our Rhythm

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

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

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

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

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

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

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

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

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

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

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

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.