Friday, July 30, 2010

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!

Tuesday, July 27, 2010

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.

Saturday, July 24, 2010

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!

Friday, July 23, 2010

Charting the Course

We got our first directions from Dr. Paul McDonnell, a psychologist in a neighbouring city. He was the former head of the psychology department at our provincial university and had a special interest in autism. He now worked part time at the university and ran a private practice out of his house. Basically, if a parent suspected their child was autistic, he was the 'go to guy' for diagnosis. My husband had been a big man on campus and knew Dr. McDonnell from his days as a student there. He made a phone call and we got in to see him quickly. It was a relief -- until we got the report.

I spent a lot of time looking at the pinpoints on the graph, the summaries and explanations of the different areas of testing and the list of recommended books. Dr. McDonnell had told us to read the books, figure out how to "do" ABA, write some programs and hire some university students to do them. He explained -- gently and with empathy -- our son needed to learn at twice the rate of his typical peers if we wanted to catch him up to their level. We had a blissful ignorance about how much he lagged 27 months of age (the time of the report) he was near the norm for his gross motor skills but his other areas -- language, social skills, thinking & reasoning, fine motor and daily living were all around the 14 month mark or below. It really didn't seem like much: really, it's only 13 months... how hard could it be? I did not realize how much a child learns in their second year of life. There are huge differences between a 12 month old baby and a two year old toddler. I did not have an accurate frame of reference. We had had our second child when our son was 18 months old. She was still less than a year old so her abilities were below our son's development. Our children didn't go to daycare or play groups. I wasn't involved in any mommy groups. My only nephew was six months older than our son and lived three hours away. Only one of our friends had children, a girl a few years older and a boy our son's age. We didn't visit often. Long car rides resulted in long bouts of screaming. I had not had the opportunity to see how wide the chasm really was. Then I started reading those books.

Social skills are best practised in group settings with typical peers the expert advised. I had reservations about trying daycare again. Before his sister was born we had thought a part time play group would be good for him -- and even better for me. He required constant attention and I wanted some solitary time to bond with our new baby without chasing him around. He wasn't sleeping through the night and barely napped during the day so I hoped that mornings at a playgroup would give me time to sleep and enjoy our new baby. Few facilities took young toddlers so we hadn't been able to find a place before our daughter was born. Shortly after her birth, I happened to drive by a church that advertised openings at their daycare for children as young as 18 months. Our son was just past this age so we hastily arranged a visit. We instantly liked the director, Tara Diamond. She was a big woman with an even bigger heart. We were introduced to our son's daycare teacher, still in her teens but certainly well experienced with two year olds. She asked some rapid fire questions: Was he toilet trained? Nope, not even a little bit. What did he like to eat? Nothing besides shredded marble cheese. Did he talk? Nope, not at all but he did like to scream. Did he use a cup? Nope, just a baby bottle. Did he nap? Not very often and not very long. She gave me a sidelong glance and said no more. I didn't want to know what she was thinking. When I filled out their questionnaire I was asked what were the things my son enjoyed. I wrote Teletubbies, Blue's Clues, cheese and fans (especially if they were spinning). Under things he didn't like I wrote getting his hands dirty, food, sitting, sleeping, loud noises, being touched. There were more but there wasn't room to write them all in. We disclosed his delays to the director but stopped short of telling her we thought he was autistic (we hadn't been able to get our doctor to even discuss the possibility at this point so why raise that flag?). She reiterated what our doctor had said: he was a boy and the first born. He had been several weeks premature so initial delays were expected. He hadn't had time to socialize with other children and I probably babied him. She suggested we leave him for an hour so we could see how he coped. We hid in the parking lot for 15 minutes, then peeked into the backyard to see his class playing. While other children ran around climbing the play structures and going down the slide our son stood stock still, staring at the line of car bumpers he could see just past the chain link fence. Occasionally he would pick up a handful of pea gravel and pitch it over the fence, then quickly wipe the dust on his shorts. Not once did he look at the other children or try to play with them. When it was time to go back inside the teacher called his name but he didn't respond. She walked over to him and put her hand on his back to guide him to line up with the other children. He immediately ran to the other end of the playground and caught sight of me. He started screaming. I started crying.

I took him home and placed an ad for a 'mother's helper' in the local newspaper. In the end we hired the younger sister of my hairdresser. She came every weekday afternoon. She pushed him around the house in the laundry basket. He would laugh hysterically. He ran around the backyard, throwing rocks and toys over the fence for her to retrieve. She learned how to make his special mixture to drink when he was hungry. She learned how to interpret his grunts and screams so as to make his days more enjoyable. She stayed for two months until school beckoned. She was our son's only playmate but he didn't seem to notice when she was gone.

So here we were again looking at daycares. I procrastinated. I visited a few and when I saw the two year old class, with their craft projects and circle time I knew our son was far from ready to join. He couldn't use a spoon, let alone a crayon. He couldn't stay still unless strapped into a high chair. How could he sit 'criss cross applesauce' amongst 10 other squirmy kids, reciting the days of the week and talking about Valentine's Day? There was a new daycare being built down the street. It wouldn't be ready for six months. "Perfect," I thought, "lots of time to get him ready."

One of the books I read explained that the first skills that needed to be taught were attention and imitation. I found some sample programs in another book with examples of what specific actions to teach. I searched the internet for video on how to actually 'do' therapy. I ordered a kid-sized table from the Sears catalogue.

Our first session went like this: I sat on the floor and positioned our son sitting on the floor facing me. I asked him to touch his head by saying "do this" and placing my hand on my head. He stuck his fingers in his mouth and started sucking, then looked out the window, giggled and ran away. I wasn't even sure he had seen what I did or heard what I said.

I looked in the books to figure out how to get him to pay attention and found a program where you say "look at me" and the child learns to look at you. Seemed simple enough...until I tried it. He wouldn't look, even when I took his face in my hands and turned it toward me; he still averted his eyes. In desperation I snatched the baby's rattle off the floor and shook it. He immediately looked at it. Quickly I raised it to my eye level and he made a furtive glance at my eyes. I exploded with praise: "Good looking at Mommy honey!" He snatched the rattle from me and turned it over in his hands, ignoring my words. I took the rattle back and said "look at me" and then shook the rattle beside my head. Again he looked up, first at the rattle and then in my eyes. I gave him back the rattle while exclaiming how happy I was that he looked at me. As he examined the rattle, he stayed sitting on the floor. My joy abated when his interest waned. He threw it, jumped up and scampered away again. I scavenged the house for other noise making toys and piled them beside me on the floor. I would pick one up and show it to him. If he reached for it I would pull it away and up to my eye level and command "look at me!" in an emphatic voice. When he made eye contact I gave him the toy and told him what a good job he was doing. When that toy stopped working, I picked a new one. We did this routine for half an hour and then the baby woke up crying and hungry. Therapy abruptly ended for the day.

As I sat there nursing the baby, I watched my son entertain himself by throwing the empty blue water cooler bottles around my kitchen. I thought about all the things I needed to teach him and how the baby's nap time was just not long enough to get the job done. He needed to learn to copy gross motor actions, fine motor actions, actions with objects, oral motor actions, and verbal utterances. These were just the first tier of programs in imitation skills. There were at least ten more before we could even move on to higher level skills. I realized we needed to hire people. We needed a team to spell me when the duties of motherhood called. There weren't any clinics or caregivers who specialized in autism in our city -- or even our province. We didn't know of any other families attempting this treatment. There was no master list of trained ABA personnel. Our province was indeed a barren land. I asked myself this question: "Where do you find deck hands in the middle of a desert?" Suddenly, I was very tired.

Thursday, July 22, 2010

How do we get there from here?

In all my research I had concluded the only way to recover my son from autism was to 'do' ABA but there were some major questions to be answered before we could set out on our journey:

What is ABA?

ABA stands for Applied Behavioral Analysis and was first used by Dr. Lovaas at UCLA in a very famous clinical study published in 1987. Basically it applies Skinner's principles of behaviour modification by breaking down all learning into very small and specific teaching tasks, with positive reinforcements being given to the child for each correct 'target' (answer). It teaches everything from physical imitation to language to social skills to cognitive skills in a systematic way, with accurate record keeping and statistical evaluation. In parts of Canada it is also called 'IBI' which means Intensive Behavioral Intervention and I am told it is the same thing but I cannot confirm that. I can confirm that ABA is the ONLY scientifically proven method of treating autism such that 47 per cent of all children who undergo ABA completely recover in two years. All but one child in the original study showed marked improvements over the course of treatment. The original 1987 study and the subsequent 2006 W.E.A.P. replication study (Wisconsin Early Autism Project) have been published in peer reviewed medical journals and their results are irrefutable. The later study was over a four year period instead of the original time frame and the results showed the recovery was not only possible during those first two years but that children continued to improve and recover in the third and fourth year of the study. Of course I didn't know about the 2006 study when we started therapy. When our son was not recovered after the first two years of therapy I began to lose hope but we soldiered on. He was 4 1/2 years into therapy when the W.E.A.P. study was published. It was satisfying to read the results because it confirmed what I already knew: our son had continued to improve and would recover...sometimes it just takes a little longer.

What is recovery?

And why don't people say cure? Recovery is generally defined as the child being indistinguishable from their peers. I guess the professionals use this term because they are cautiously optimistic about the outcome for children and the word 'cure' sounds like something instantaneous, like a magic pill. I've heard there is a follow up study being done of those 1987 'graduates' of the original study. I mean, to pass tests and be deemed as 'no longer on the spectrum' is one thing, but how are they functioning in the real world today? I am looking forward to seeing those results. Who got married? Graduated university? Got voted homecoming king/queen? Got arrested? Lives a happy fulfilling life?

My definition of recovery is a little bit different. Yes, it is about indistinguishability (if that's a word!) but it's more -- it's not just in the way they act or talk to the outside observer but also in the way they think. The whole point of therapy is not teaching the child to memorize every object label, action or skill but rather to learn how to learn -- to be able to figure things out on their own using logic and reason when presented with a new situation. I like to explain it like this: when a very young child is exposed to a second language they learn that language in a way that allows them to think and dream in that language as well -- it becomes naturalized to them. Sometimes, like all those baby girls being taken out of China and brought up in North America, they lose that first language completely and adopt their second language as their mother tongue. I am English but live in a bilingual province. I will never be truly bilingual because I learned French later in life. Whenever I speak French I must translate in my head what the other person is saying, think of my answer in English and then translate it to French in my head and finally speak French. Sometimes I can do it pretty quickly but I have to rely on my memory to search for the correct words. And I still have an accent, my tongue unaccustomed to forming all those unfamiliar little flips and rolls so sometimes my intonation and pronunciation is a little off. It is definitely not a natural thing for me to speak French and there is no such thing as a casual conversation for me when it comes to conversing in this second language... it's a lot of work for me and I can get tired easily, quickly reverting back to my English -- my comfort zone -- as soon as possible. I like to joke that I speak French much better after a few glasses of wine: I'm more relaxed and don't over-think things. Yes, speaking French causes me anxiety because I know enough to know I am not quite 'getting it -- that I can't truly pass for 'one of them.' I think this is just like a young autistic child who learns all the stuff typical peers learn but in the less-than-natural setting of therapy. If they learn enough, early enough, they will begin thinking 'normal' as well as acting 'normal.' I put that word in quotes because it's rather an elusive term... perhaps it's better to say 'typical.' An autistic child who starts therapy later can still learn to act 'typical' but may not learn to think 'typical' so that the process is the same as my French: they will assess the situation, think in their head what they 'should' do or say based on their years of 'second language training' then choose their response. I think they have anxiety, like I do, because they feel different from their peers and must work very hard to maintain the 'conversation.' For some people I think they would say that this is recovery because the casual observer wouldn't be able to tell the difference between that child and a typical peer. I disagree because there are times when these kids slip up and revert back to their 'native tongue.' Like me speaking French, sometimes the words aren't there and their head is tired of trying to process the foreign language. Ultimately though what I see as the demarcation line is the fact that they are self-aware and know that they are out of step with their peers, that part of their time spent interacting is a bit of a guessing game as to what they 'should' do or say. Typical kids don't feel like that as they rely on their natural intuition instead of their memory banks.

This other telltale sign of true recovery is that there are no slip ups, no regression -- it's not like cancer where a child could be in 'remission' and then 'catch it' again... once they are 'fixed' it is forever. The child may still have a few quirks but what kid doesn't? As a kid I spent hours setting up Barbie tableaux and screeching at my sister if she touched them... maybe I was a little rigid (or a rotten sister) but I certainly wasn't autistic. My husband use to know the stats on every hockey player in the NHL when he was a child... maybe that made him a little obsessed (and very Canadian) but not autistic. My sister ate white sugar with lettuce, my cousin lived on peanut butter and my best friend had a mayonnaise sandwich everyday after school. Poor dietary choices for sure but not autistic. Everybody I know has weird and wonderful aspects to their personalities. As long as these qualities don't impede social relationships or interfere with their ability to navigate the world, then we should celebrate their unique characteristics. ABA isn't about turning a child into a socially acceptable robot... it's about capitalizing on a child's strengths to eliminate their weaknesses and enhancing their personality.

How do we get there from here?

To achieve true recovery, there are many factors that are fundamentally important: beginning therapy at a very young age (24 months or earlier), a program that runs a minimum of 30 to 40 hours per week, a comprehensive teaching strategy (which includes exposure to typical peers in a controlled setting) and generalization of these skills across all domains (which means parents are equal partners with therapists in providing the child consistent expectations of behaviours and learning opportunities). It includes not only working one-on-one with a child at a table but also playing games, singing songs, riding a bike, tying shoes, playing sports, having play dates, going to daycare, eating with utensils (or just learning to eat new foods), toileting, colouring, drawing, printing, math, reading, role playing, building block structures, building sand castles, playing dress up, making crafts, having conversations, telling jokes and so, so much more. It is a 24/7/365 job for all involved. Our house would become "ABA Central" because there wasn't a moment that our children weren't being "forced" to be engaged -- even bath time became a learning opportunity with us singing songs, naming body parts as we washed, using bath crayons to draw emotion faces and shapes on the walls, etc. When we drove in the car, we would name the colours of the cars, point out big versus little vehicles, say whether we were turning left or right, say when we stopped and "1-2-3 go!", demonstrate going fast versus slow, count the buses and anything else we could think to do to keep them paying attention to our world. It was every minute of every day, for years and it was so exhausting! All these little routines and habits came with time and practice. It became second nature to focus on every moment as a teaching opportunity.

One final clarification: ABA includes speech therapy, occupational therapy, physiotherapy and sensory integration therapy. It involves not only the 'discrete trial' approach of sitting one-on-one with a child and delivering a command, waiting for the child's response and providing (or withholding) a reward but also teaching through artifically created play situations so that a child learns 'incidentally' -- that is, learns skills while actually doing a natural activity. It can include using illustrated custom-made stories to teach cognitive understanding, visual schedules to help a child order their day and lots of other visual aids. It does NOT include chelation, special diets, vitamin supplements, medications, hyperbaric oxygen chambers, detox regimes, NAET, swimming with dolphins or riding horses. Some parents choose to do these alternative treatments either in addition to or in lieu of ABA but they are not part of a traditional ABA therapy program. I make no judgements on parents' choices for their children because they are the ones who have to live with their decisions not me -- I am supremely happy to be living with my decision and I wish for all parents and their children the same happiness.

As overwhelmed as I was in learning all this information, it made perfect sense to me. I was a pragmatist and thought that there was no need to re-invent the wheel. I now knew the facts and would just need to learn how to 'do' the actual therapy. The easy part was over. The hard work lay ahead.