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.


  1. May I ask you, as I see that your two eldest were diagnosed on the spectrum how long did each one of them need intensive therapy. We have been at it for a year now and I just wonder... What your childrens learning rate was, so to speak. We have just entered the middle stage curriculum... I am kind of out of breath now looking for some hypothetical answers that I also know noone can really give me :)

  2. Thank you for your question. My son began therapy in early 2002 and we finished his program in the summer of 2007. Our eldest daughter began therapy in late 2002 and finished at the same time. Our middle daughter began therapy unofficially in early 2004 and finished at the same time. It should not have taken so long but we had a lot of difficulties in securing sufficient staff during the first two years. It wasn't until 2004 that we were able to maintain a consistent, high level 40 plus hour per week ABA program for each of the children. The early stages of therapy were extremely rough with a very low learning rate but as I became a more experienced programmer and we were able to train committed workers the learning rate increased greatly. The learning rate for your child should accelerate over time but you may find there are dips in progress which are normal: usually there is a step backwards before a child surges ahead and this process will repeat itself many times along the way. If you haven't already, you should read about extinction bursts as they may help you to understand and 'tolerate' those times when your child appears to be losing ground instead of gaining it. Godspeed on your journey to recovery!

  3. Thank you for answering. Can you perhaps recommend good books on program writing and on methods for generalisation? I hope I am not pestering you.
    We are using Work in progress and Behavioral intervention for young children with autism.

  4. Kathleen Quill's book is excellent. While Catherine Maurice's book is useful, the programs should be used as guidelines only. The difference between good programming and great programming is the ability of the writer to draft according to the child's strengths and needs. I would recommend anything by Brigitte Taylor as well as the books "Teaching Children with Autism to Mind Read" and "Teach Me Language" (both the manual and the workbook). I also found the RDI (Relationship Development Intervention) book very useful, although the author is not a fan of ABA. Another good resource is the ABLLS publications, both the workbook and the text. While the skill sets aren't peer normed they do provide you with a clear understanding of the range of abilities within a skill. I hope your find this information helpful. I will be doing a post on recommended publications and resources but it will come much later so I am more than happy to give you some suggestions now. I found it useful to google the skills I was targeting and then review the internet listings to find appropriate resources (books, videos, etc.).

  5. I forgot to mention about generalization: The portion of an ABA program which deals with maintenance and generalization is fundamentally important. However, it should NOT be a review of the original programming format. All the programs should be converted to game format (such as after teaching body parts receptively to use the game "simon says" to review them or play 'hokey pokey'). Generalization can occur during the acquisition phase of the programming when there are more than one therapists teaching. It is important to vary the stimuli (items used in teaching) and the setting as much as possible during acquisition. For example: we taught the object label 'cat' by using a figurine of a cat but then moved to a picture card and then moved to sorting several different pictures of cats. We also varied the SDs from the early programming so that our son would learn to 'perform' based on several different commands (such as when doing receptive object labels saying "touch" "point to" "show me" "where is" and "give me"). It is important to provide as much variety as possible (people, places, things) to combat the rigidity that sometimes occurs in the discrete trial format of learning. Again I hope this helps!

  6. This is all very valuable. I am worrying about generalization and maintenance at the moment. I am aware that varying is important. I need to organize generalization somewhat. My son has only two therapists me and his aide so generalization has to be taken good care of. I wish there were more of us.
    You are extremely helpful.

  7. No one could have guessed how valuable the Hawthorne "contrary" gene could be!