Monday, August 2, 2010

The First Squall

We were down to one worker, the male 'volunteer' from the special needs employment service. He would be leaving at the end of the summer to return to his school job. We arranged to increase his hours so that our son would have more opportunity to practise his skills with another person. Our son seemed to be enjoying this therapy time more and more and the tantrums were slowly reducing. Life was far from normal, however.

We had gates that blocked off the kitchen and family room from the rest of the house but our son had learned to scale one of them and could unlock the front door. One summer afternoon, while both my infant daughter and I were sick and dozing on the couch, I awoke to the sound of a strange man's voice. Our son had opened the front door and wandered down to the traffic island alone. This neighbour had been standing in his front yard talking to another neighbour when our son came outside, leaving the front door wide open. After watching our son drop pebbles through the manhole cover for 20 minutes and no adult emerging from the open doorway, the neighbours became concerned. When they spoke to our son he had stared at them blankly and then tried to run away. They stopped him before he got too far. The neighbours did not know us. We had moved onto the end of the court in the winter and we didn't socialize. Our son was such a runner that getting in and out of our vehicles was a very quick process. We didn't dawdle in the driveway and certainly didn't have time to chat up the neighbourhood as we carried our son in and out of the house. In my feverish haze I heard these questions: "Hello? Is anybody home? Are you missing a little boy?" I was dishevelled, still in my pyjamas, covered in drool from my young daughter and completely clueless that my son had been wandering in the street for half an hour; not the best first impression. We installed deadbolts at the top of all exterior doors the next day.

I still had to watch our son constantly when he was around the baby but he wasn't nearly as violent with her as he once was. Gone were the days when he would attack her while she slept in her crib. Now he hit her when she was crying or pushed her away when she disturbed his perfect line of cars. As long as I ran interference, our daughter was kept out of harm's way.

He was now eating Arrowroot biscuits and dry cheerios dipped in peanut butter regularly, as well as a bag of shredded marble cheese and countless bottles of liquid supplement. He had recently tried Lays plain potato chips and despite their lack of nutritional value, I was happy to see him not gag on this new food item. He still had to be strapped into a highchair at meal time as he would not sit at the table to eat. He was growing and had regular bowel movements so we weren't too worried about his nutritional intake. I wanted him to eat more food but I also wanted him to talk and be normal in so many other ways that I made mealtime challenges a low priority. It was the wrong decision but I wouldn't know that until many months later.

We had not considered potty training. I had never potty trained a child in my life and didn't know where to start, especially since all the books I found were for typical children. I decided to wait on this challenge as well. I still stand by that decision and will explain the theory and practice of potty training in another entry. My decision to wait was one of the 'lucky guesses' I made, which helped to balance out some of my mistakes.

I received a telephone call from the City Hospital SLP with a date for our next appointment. It would be in three weeks. I inquired whether once testing was finished I could expect speech therapy appointments with more frequency. She told me we would discuss it at the next appointment. I again explained to her that we were doing ABA and speech therapy needed to be an integral part of the program. Again she told me we could discuss my concerns at the next appointment.

I drove to the city of Fredericton to meet with Cynthia Howroyd to discuss new programming. She had arranged for me to meet another couple with whom she had worked. They had a daughter who was now indistinguishable and they had brought videos to show me. While the initial video showed her walking barefoot over Lego repeatedly and playing inappropriately with a stuffed toy, she looked much higher functioning than my son was. Still, as I talked with them about the hours spent doing therapy and the struggles they had had financially I found comfort. When they spoke about how they now had a nearly typical little girl who would go to Kindergarten without a diagnosis in another year my heart ached for the same prognosis for my little boy. I so badly wanted to be in their position. As I watched the last video of their daughter singing songs and playing with her father I bit my lip to keep from crying: I wanted that and I wanted it now. As I drove the two hours home I felt bone-tired knowing that we had such a long journey in front of us. I kept replaying in my mind the video of the happy little girl and hoped against hope that one day I would have a video like that of my own child.

The day of the third City Hospital speech appointment arrived. We made it to the waiting room without incident and were quickly greeted by the SLP. She had finished the testing and was going to give me an oral report on our son. I had not brought pen or paper so I couldn't make notes. I wasn't given a copy of her report. While I no longer remember the details of what she said I do know that he was two standard deviations below the norm on the bell curve. I remember gazing at that graph as she explained how his expressive language -- his ability to speak and express himself -- was far below average. "Okay," I thought, "tell me something I don't know." She went on to say that his receptive language -- his ability to understand what was said by others -- was also below peer level. Again, it was no surprise to hear this information. She began talking about PECS, the Picture Exchange Communication System. PECS is used by non-verbal children and adults to create sentences to communicate. It starts with a simple requesting phase where a child gives an adult a small laminated picture in exchange for a tangible object, such as a toy or a cookie. Eventually that routine is expanded to a sentence strip where the child creates the phrase "I want cookie" by placing the pictures for "I want" and "cookie" onto a Velcro strip and then gives that to the adult. The Boardmaker program that creates these pictures can make virtually any picture to form compound and complex sentences, although many of the pictures require a certain level of abstract thinking. For example, the picture for 'help' shows the American Sign Language hand symbol for help with arrows demonstrating the movement required when actually making the sign. I did not think my son would understand these sorts of abstractions and besides, wasn't it just better the way we were doing it, teaching him to actually say the word 'help' when he needed it?

As the SLP continued to explain about PECS I interrupted her. I told her I didn't want my son to use PECS especially since it involved a lot of Velcro. I wanted my son to talk. She looked perturbed at my objection and impatiently explained that my goal should be for my son to be able to communicate and PECS would give him this skill. I wanted language -- she wanted communication. I continued to argue saying my son was capable of making sounds and we had a private consultant who had been working with us to teach him to speak. The SLP sat back in her chair and looked surprised. She asked whether I planned to continue using this private speech therapist. I told her I didn't see any reason to stop. I explained what we had been working on and how my goal was for my son to talk like other children. The SLP looked at me and said "Look, you need to understand something. Your son is autistic. It is not likely he will ever learn to talk." She should have slapped me in the face because that would have stung less than her words.

I tried to salvage the situation and asked when we could start scheduling regular speech therapy appointments. She told me that if I wanted to have speech therapy with her then I needed to agree to the use of PECS. I told her our private consultant had never mentioned using PECS for communication and that we had been using photographs with magnets for a visual schedule and a choice board. The SLP then told me that she wanted to call this private SLP so she could discuss my son's needs. I considered her request: It would cost us money for a telephone consult and I was also a little concerned that she would tell Cynthia she could no longer work with us without PECS. I refused to give her the telephone number. This made the SLP mad. She told me that there could not be two speech programs and that there had to be one person in charge, not two. She announced she would be going on maternity leave in the Fall and my son would be placed back on the waiting list. Once she returned from maternity leave, his file would be reviewed and speech appointments scheduled, according to the priority of all the children then awaiting speech therapy. She then smiled and said she would be gone for *only* six months and it would "go by fast." I think she was trying to comfort me but I told her that was exactly what I was afraid of: our son waiting to learn as time slipped away. I started calculating: she was about seven months pregnant and would not be going on maternity leave until the Fall... it was now August... six months from October would be March which was eight months from now and then there was no guarantee he would immediately begin speech therapy. We could be waiting a whole year before he was seen again. It was simply too long. I begged her to reconsider putting him back on the waiting list. She told me, in no uncertain terms, there were lots of other children who needed speech therapy and the department needed to conserve their limited resources; they needed to prioritize their patients and work with the children who could most benefit from speech therapy. I thought "Is she saying my son wouldn't benefit from speech therapy? He already was progressing in his home program!" I told her I thought we had wasted our time that summer with the assessment because in six months' time (or a year) my son would be so much further along and we would have to do the assessment again. I had been given false hope with these appointments and I didn't see the logic in her plan.

The SLP paused and gave me a thoughtful look and then she reminded me my son was autistic and waiting several months to begin speech therapy wasn't going to make any difference for him; he would probably never speak and I needed to come to terms with that fact. I challenged her and said Cynthia Howroyd disagreed and that we would continue with our goal of teaching my son to speak during her absence. She then gave me an ultimatum: If I wanted to get the free hospital speech services I needed to choose to follow her advice. She was not prepared to work in conjunction with another speech therapist because she wanted to be in control of his therapy. If we were still using Cynthia when she returned from maternity leave our son would remain on the waiting list. This SLP would not see him until we agreed to her course of action. She would be in charge or she wouldn't be involved. I was in shock. I thought then -- as I do now -- that two heads are better than one and the more heads, the better. Every professional has something to bring to the table. It takes a village to raise a child and it would take an entire team of people to help my son.

I asked her if she could give me advice or direction on what to work on with my son while we waited for her return. She refused, saying that unless she was directly supervising his speech therapy during monthly visits she would not give me any 'homework.' I would have to wait until after her maternity leave before starting any therapy. I begged her with these words: "Teach me so I can teach my son." The SLP was unswayed by my pleas: There would be no more free speech therapy unless I did as she said. I looked at my son, crawling around on the floor, sucking on his fingers and visually stimming on a toy. I desperately wanted her to help him but it was a power struggle I could not win. Something inside me broke. There seemed to be no air in the room and I was having trouble breathing. My hands were shaking and tears welled up in my eyes. I said in a voice raw with emotion: "You remind me of my parents' dog who spends her days pissing in the four corners of the yard so every other bitch in the neighbourhood knows that's her territory." The SLP sat back in her seat and gave me a disgusted look. Through curled lips she asked, "Why are you telling me this?" I stood up and said "Because there is a powerful smell of piss in this room and we are never coming back." I picked up my son and left without another word or a backwards glance.

As I walked through the corridors of the hospital I was sobbing. My son was trying to run away. I scooped him up again and carried him, kicking and screaming, outside to my vehicle. I strapped him into his car seat and sat down on the curb with my cell phone. I dialed my husband's work number. When he answered I could barely speak. Finally I choked out what had happened. We would not be receiving speech therapy from the hospital. She had thought our son was a low priority. I had lost my temper and behaved rudely. I was oblivious to the people walking past me on the sidewalk as I continued lamenting about the unfairness of the situation and the cold realization that some people -- powerful people -- could refuse to help us. My son was not important to this SLP because my son was just another autistic child with a poor prognosis. As I spoke to my husband I could hear my son screaming through the open door. I could taste the dust from the road in my mouth. We had a choice: do as this SLP wanted and risk jeopardizing our son's recovery or go against her wishes to prove her wrong, at great cost to both my husband's wallet and our son's progress. I hadn't wanted to argue with her or anyone. I had made compromises and been polite with almost everyone we encountered in this journey. I realized now that nice only got me so far. Nice was not going to help my son. When the water was rough and the boat was in danger of capsizing, I needed to fight or we would surely drown.


  1. That is so terribly true nice only gets you so far I have already experienced that...
    I am awaiting your posts most eagerly the fact that somebody made it somewhere is truly reinforcing my efforts.

  2. Thank you for your kind words. You are not alone in your journey as there are literally thousands of mothers (and fathers) out there who are rowing to Italy as I type. I am not alone either because there are just a many families living in Italy. I look forward to the day when we can all eat a bowl of pasta together!

  3. That would indeed be a wonderful bowl of pasta :)