Saturday, July 24, 2010

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!


  1. An amazing story of perseverance and the love of parents for their children. My husband and I have been touched by your story and will continue to read your future blogs, as we come to understand the struggles that families face in their quest to reach Italy. You have enlightened us and inspired us to demand more action from our political leaders.