A Friend Like Henry

by Nuala Gardner

  Dale would want to stay in the park for over four hours and even then would not want the visit to end. The whole experience had to be entirely on his terms. While there he had a set routine of rituals that had to be adhered to in order to prevent tantrums occurring. When I needed to leave, no amount of bribery or preparation such as “Time to go soon” could end the visit, even in torrential rain. Because our pleading did not work, we simply had to lift him up and go. His disapproval would be registered with a tantrum of mammoth proportions. I had to carry him while he screamed, punched, continually kicked my shins, scraped his fingernails down my face, or tried to bite me to demonstrate the full force of his rage. Exhausted, I finally got him to our tenement building, where I then had to negotiate six flights of stairs to our apartment.

  Dale would writhe and lash out, so I would secure my survival bag over my head and shoulder. I would hoist him into a horizontal position, supporting his body on my waist and eventually managing to pin his arms to his side, with his head facing away from me so he could not bite. Then we would start to climb, my right arm locked around him, my left free to grip firmly onto the handrail, to help pull us up sixty-five stairs in all. We came to refer to them as “the north face of the Eiger.”

  Occasionally, the combination of Dale’s anger and extraordinary strength would mean that I couldn’t even start the ascent. Then, if I was lucky, one of the neighbors, alerted by Dale’s screams, would come to assist. It was easy if there were two adults: one would grip Dale firmly under the arms, the other by the feet, and he would then be lifted bodily up to the apartment.

  Mum and Dad learned to employ this technique also, and it was to become a familiar sight to the public in Greenock. Dale also would frequently be carried out of whichever shop or public place he was trying to wreck at the time.

  Jamie, I knew, had still been clinging to the belief that Dale’s behavior was the result of his premature birth and that things would improve in time. But somewhere deep within me, the feeling of doom about the future was steadily becoming stronger. I wondered if Dale was not suffering from the damage to his head at birth or whether something equally sinister was going on, but what that might be I still didn’t know. If Dale was perhaps developmentally delayed or had learning difficulties, then I knew I would do my utmost to help him catch up. I didn’t have the faintest idea of what was to come.

  Because Dale only slept for an hour or so at a time, the only way I could get uninterrupted sleep was by opting to work two night shifts a week. Jamie was then on hand to look after Dale during the night and my mum and dad would have him the next day once Jamie went to work.

  It was Granny Madge, while minding Dale in this way, who made the breakthrough with Dale that was to give us all immeasurable hope for the future. She had been with him in the Wellpark for hours, as usual, and as she finally tried to get him to leave, he managed to break away from her and ran into a large tree by accident, not surprisingly hurting himself. He was really upset, and in a moment of inspiration, Granny Madge pretended to hit the tree back. She stood there, shaking a large branch and saying, “Bad tree, don’t hurt Dale.”

  The next time they were due to leave the park, Madge anticipated the usual tantrum and grasped Dale firmly by the hand. But instead of freaking out, he dragged her over to the tree. Although he still had no language, she nevertheless understood that he wanted a repeat performance of shaking the branch, so she decided to humor him as a means of getting him out of the park without a tantrum. My poor mum stood there shaking that one branch for almost an hour before Dale was satisfied, but it did the trick, and he left the park peacefully. “Shaking the tree” became a regular part of the Wellpark experience and considerable time for it had to be built into the program.

  The breakthrough came when Granny Madge was dutifully shaking the tree one day, patiently saying, “Tree, Dale, tree.” She had been doing this for the last several outings, but Dale’s only response was to jump up and down in delight; he so loved watching the branch rise and fall, with the occasional leaf being detached. Madge repeated, “Tree, Dale, tree,” and on this day, she was utterly stunned to hear in reply a wonderful voice she had never heard before.

  “Tree,” Dale shouted back with considerable enthusiasm. “Tree!”

  Through dogged persistence, my mother had got his first word—at twenty-six months of age. She answered him back with great glee, “Yes, Dale, tree!”

  That evening when Mum brought Dale home, she told me cautiously, “I think I might have a little surprise for you.” I watched, intrigued, as she lifted Dale up to the kitchen window and pointed. “Look, Dale, it’s a …?”

  After a dramatic pause, Dale’s matter-of-fact response was, “Tree.” Mine was to dissolve into tears. Then I grabbed one of his books, my heart pounding, and pointed at a picture of a sycamore. Once again he answered, “Tree.”

  I gently hugged him, tears still in my eyes. “Good boy, Dale. Yes, it’s a tree. I love hearing you say tree. You’re a good boy. Tree. Tree! It’s a tree!”

  Still better was that Dale looked really happy because of my delight. I gave him a sweet reward, repeating, “Good boy, it’s a tree.” I wanted him to learn how much I loved hearing him speak.

  I beamed at my mother, who observed, “If this is what it takes, so be it. If we can get one word, we can get two.”

  Dale seemed delighted with his new word, but the enormity of what would be involved in teaching him more soon became apparent. He had taken the meaning of the word tree literally, thereafter assigning it to everything remotely similar and green, whether it were a real tree, a plant, a bush, watercress, or broccoli. Nonetheless, I couldn’t ignore this momentous breakthrough. It had taught me that we had been trying to teach Dale on “our terms,” bombarding and overloading him with “our” language, not taking into account that his understanding was so poor. With Granny Madge being led by Dale on “his” terms, through the basic repetition of shaking the tree and reinforcing that this alone was a tree, she had finally shown that it was possible to get through to him.

  It wasn’t so much a first word that my mum had prompted as a whole new approach, and I knew that our future efforts should be tailored to the same method that had finally produced that wonderful, glorious “tree.”

  3

  A Lonely Battle

  Mum and Dad lived in full view of Greenock Central Railway Station, and Dale used to love to look at the trains with his granny. When coming home from the park, he would drag her to the entrance of the station, and she would always apply the appropriate word, albeit a very simple one, to describe what she saw. Sure enough, the day came when she got her reward as Dale chanted back, “Choo-choo, choo-choo.” He had doubled his vocabulary!

  Dale’s fascination with hubcaps reaped further benefits. I wasn’t embarrassed to sit on the pavement with him as he scrutinized a hubcap of particular interest. I would give a simple running commentary, always trying to reinforce the names of things and what he was doing with them: “This is a wheel. Dale is touching the wheel.” Then, as he took me to inspect another car, I would hold back a little to get his attention. “Car, Dale. You want to see the car?” He would attempt to pull me toward the car and I would repeat my words, so that with each step he learned that it was the car he wanted to see.

  Eventually, the day came when he rewarded me with his third word, “car.” I excitedly confirmed, “Yes, Dale, car. Let’s see the car.” On seeing my delight, Dale repeated his new little word over and over. To reinforce the power of communication, I rewarded him with a new toy metal car in the same color as the one he had pointed out to me. The new toy and my praise delighted him.

  Heartened though I was with Dale’s growing collection of little cars, there was no denying that the occasional words he now echoed back to us were always spoken without expression or intention to communicate. Also, delighted as Dale was with his collection of cars, the absence of symbolic or imaginative play was all too evident. He would simply line up the car
s without the slightest attempt to make engine noises. He would form and re-form these lines for hours on end if we allowed him to, and it was hard to envisage what possible enjoyment he was gaining from doing so. Yet he was totally locked into his form of play. If I tried to engage him by attempting to lift one of the cars, a tantrum would result. If I stepped over his line of cars, fury would be unleashed; I had to sneak by when he wasn’t looking.

  Any intrusion into Dale’s world caused problems. Attempts to touch or even approach him seemed to terrify him. I tried to reduce his anxiety and confusion by putting his clothes on in the same way and order each time. For example, I always put on the right side first. But he would nonetheless become rigid as I did so, and often I became frightened I might break one of his limbs if I persisted. When I was at last successful, he would often simply strip off his clothes and make it perfectly obvious he would like to remain naked. I would repeatedly restart the whole process until I won the battle. I finally realized that he hated certain fabrics and got around that problem with non-coarse clothes and by buying the same items in bigger sizes.

  In addition to these difficulties, Dale was still not toilet-trained. Despite my having tried all the normal techniques to help him to learn, he had no comprehension whatsoever of the process, so this aspect of our lives had to remain low priority. We invariably needed a ready supply of diapers wherever we went.

  Nonetheless, because Dale finally had learned those first few words, it felt as though progress had been made, no matter how painstakingly slow. Others, however, did not share our optimism. Some thought Dale might be deaf, but he could react to the quiet rustle of a bag of chips. Also, if he were deaf, how did he learn the few words he had in the first place?

  Not long afterward, Dale threw a horrendous tantrum at the Peat Road toddler group, prompting a furious reaction from one of the other mothers. He had become attached to a small plastic spoon from the toy kitchen, and the mother insisted it had to be put away with all the toys. I pleaded with her to let me return it later, but she wouldn’t listen. I had no option but to forcibly pry the spoon from Dale’s hand. The result was a horrific tantrum, as he used his head to hammer against the floor to show his anger.

  “We’ve had enough of his behavior,” she ranted. “All of us. Don’t ever bring him back here again.”

  Dale’s tantrum continued unabated on the mile and a half I had to carry him home. Exhausted, disheveled, and bleeding from scratches, I finally wrestled him up to the apartment, where he proceeded to bang his head off the walls or floor. Then, as I sat astride his chest trying to protect his head, he would sink his teeth into his hands or arms—or mine—and pull at his face as though he were trying to rip the skin from it. He seemed to feel no pain, only torment. To watch a child I loved so much suffering in this way, quite unable to communicate his problems, was more than I could bear.

  I eventually managed to put on a Disney Sing-Along Songs video, which, to my huge relief, attracted Dale’s attention and at last he began to calm down.

  I moved through to the bedroom to steal what was meant to be a moment of peace. In seconds, however, I was overwhelmed by emotion and broke down, sobbing as never before. I had been holding it all in for so long, perhaps knowing on some unconscious level that if I once let go, it would be impossible to stop.

  After a while, though, my grief was interrupted by the sound of breaking glass, accompanied by Dale’s cries of joy and laughter. Smash, laugh, smash, and a louder laugh. I hurried to find him standing barefoot at a cupboard door in a sea of broken wine glasses. I froze as he lifted up the next glass. Then, before I could grab him, he noticed me and calmly started walking toward me, quite unaware of the danger but somehow managing to avoid by fractions of an inch the fragments of glass strewn all around him.

  While I felt momentary relief at such a near miss, I knew I couldn’t go on like this. Taking a huge deep breath, I composed myself and at last resolved that it was time to get help.

  In response to my telephone call, the nurse carried out a home assessment on December 7, 1990, when Dale was two and a half. She offered little advice about his general behavior and said she would make a referral for him to see a speech therapist. She observed, “His concentration was poor, but he could build a tower.” She was referring to another gift Dale had where he used large, Lego-type bricks to build something resembling the Manhattan skyline. Regardless of this observation, she ignored my pleas for help with the words I later saw in her notes, “Not meeting any peer group.” I was to find that this was the first of many encounters with professionals where my pleas fell on deaf ears.

  It was not long after this event that I attempted to take Dale to the children’s Christmas party where, like the horror of that final day at Peat Road, a nursing colleague, Jean, gave me the word autism that petrified me but ironically was to finally allow me to make sense of my son. I remember vividly what it was like as I started to read up on the subject. It was chilling how each and every book was all about Dale. I was stunned. Traits that I had thought were just part of his personality, like scratching the sides of his crib when he was tiny (which we thought quite sweet), regurgitating his food, spinning round and round on the spot like an ice skater, and even his strange tiptoe gait were all signs of classical autism. I felt as though the authors had used him as a test case. Devastated as I was, I knew that Jamie was struggling to come to terms with this word, so we both let each other deal with it in our own way.

  After three appointments, Jamie and I found ourselves sitting yet again with a speech therapist and this time an educational psychologist as well named Mary Smith. They allowed us to express our concerns about our son and both acknowledged the distress we felt.

  Suddenly I could contain my fears no longer and asked the psychologist directly, “Is Dale autistic?” My words were left hanging in the air for several moments before she replied, “We are thinking along those lines, yes.”

  Something inside me died. I had told myself to expect the worst, but nothing could have prepared me for the moment when I actually heard a professional confirm my deepest fears. In a strange way as well, I felt a degree of relief because at last the inevitable had been acknowledged. I remember commenting on how important it was to obtain a formal diagnosis and how confused I felt when they replied, “We don’t like to label children.” These health specialists went on to describe how Dale had “communication difficulties” and that some of his behavior would “come under the autistic umbrella.” I kept my grief to myself, but I could see Jamie struggling. He now had to face the word he had been so desperately hoping not to hear.

  We couldn’t bear the idea of being alone after the meeting, and so the three of us visited my mum and dad. I remember the drive, both of us silent, in shock. In the back, even Dale was so quiet you could forget he was there.

  At my parents’ apartment, I fell into my mum’s arms, sobbing, “It’s autism. He’s autistic.”

  In her usual indomitable way, she replied, “Is that the fancy name for it? Never mind, he’s still our Dale, and we’ll do whatever it takes to help him.”

  We were quiet again on the journey home, and I was worried that Jamie still hadn’t taken in what had happened. Later, I heard strange sounds coming from Dale’s bedroom and found Jamie there, lying on the bed in the fetal position, clasping Mickey Mouse and crying his heart out. Humbled by seeing him this way, I hugged him, promising over and over that we’d get through this. “We’re not going to give up,” I said. “We’re going to get that boy back to us, whatever it takes.”

  At the meeting where Jamie and I were told our son was autistic, we were shocked to learn there was no provision for children like Dale. Luckily, Dale and two other children would receive help from Paula, the head teacher at the Pre School Language Unit (PSLU) based in Highlanders Academy, a local primary school. This little group would meet with a teacher and a teacher’s assistant for only one and a quarter hours on Monday morning. This is where I embarked on a major battle
to increase the amount of help Dale would receive. It was infuriating that these children needed the most input and experience with communicating with their peers but were getting the least.

  We asked psychologist Mary Smith to refer Dale to Yorkhill Hospital in Glasgow in order to get a recognized diagnosis from a proper authority, which would strengthen his case. On the day in question, however, we were stunned to hear the consultant’s view that there was no evidence of autistic behavior “as such,” and she simply requested to see us again in a year’s time.

  Unconvinced, I called the Scottish Society for Autistic Children who suggested that we go through to Struan House School in Alloa and meet the head teacher, Jim Taylor. What we saw there convinced us more than ever that our son was indeed autistic. As I watched the teachers at work with the kids, I became determined that, no matter what, I would ensure Dale got the proper help and education to meet his very different needs. I also learned two very important things that day. I was already using the right approach in teaching Dale, and I could help even further by, “using the obsessions,” as Jim Taylor had suggested.

  When Jamie and I discussed the day’s visit back at home, we agreed that to minimize disruption to Dale, I would work on every Friday night from then on. In this way, while I caught up on sleep on Saturday, Jamie could spend some quality time with Dale and take him out to the park or into the town.

  So Jamie and Dale developed their Saturday routine, which would end with a trip to Burger King. Every week, Jamie faithfully asked Dale what he would like to eat, and every week he got no response. He therefore ordered chicken nuggets and french fries because he knew this was the type of food Dale enjoyed. Then one Saturday, Jamie burst into the apartment in a state of high excitement. “Nuala!” he shouted, waking me with a start.

  “What’s wrong?” I gasped, thinking something terrible had happened.