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.