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!

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