“I asked him if he wanted chicken nuggets at Burger King.”
I started to protest that this was hardly earth-shattering news, but Jamie shushed me impatiently. “He replied! For the first time ever, he actually replied.”
And what a reply it was. Our son aged three had replied, “No, Dad, burger.”
This was also the first time Dale had ever called Jamie “Dad.” From then on his use of the word was always on his terms but never on ours, like “Goodnight, Dad.” But we were nonetheless overwhelmed to realize Dale at least knew who Jamie was. Although delighted for Jamie, I still couldn’t help but wonder if the day would ever come when I would be called “Mum.”
A letter arrived one day from a midwife friend, Caroline Jones, inviting us to her daughter’s christening. We were a bit apprehensive to attend such a function, but Caroline and her husband, Maurice, were aware of Dale’s problems and the setting was the lovely country village of Balfron, so we thought it would do us good to get away.
On the journey there, Dale was his usual quiet, “invisible” self in the middle of the back of the car so he could see us both. We put on a musical tape with songs like “The Wheels on the Bus” to try and give him some more stimulation.
Jamie was driving through the winding country roads and just as he had managed to pick up some speed on a clear run, a massive combine harvester suddenly pulled out from nowhere, right in front of us. Jamie slammed on the brake, narrowly avoiding a collision. But in the stress of the moment, his customary laid-back manner deserted him and the word Fuck! escaped rather loudly from his mouth. Dale seemed not even to have noticed the incident and didn’t stir from his trancelike state.
When we arrived, we stayed at the back of the church, in case we needed to make a quick exit. Our fears were unfounded, however, as Dale settled down surprisingly easily and sat there as quiet as a church mouse. The ceremony began and all was well. Our son seemed to be his usual quiet, switched-off self, and we actually felt like normal family—right up until the moment that the minister began to anoint the baby’s head. Dale suddenly found his voice—and a new word, which he tried out at full volume—“Fuck!” It seemed once was not enough and my darling boy kept on shouting, “Fuck! Fuck!” with no intention of stopping.
Jamie hurried outside with Dale and I bowed my head with embarrassment, though I couldn’t resist a discreet smile to myself. Later no one mentioned the event, so we survived the day and for once enjoyed a laugh in the process. However, Dale had in fact demonstrated another common trait of autism, known as echolalia. Sometimes he would echo a word or phrase he heard right away, or it might crop up weeks later, either in or out of context, but always in the same tone it was originally spoken.
Jamie and I came to refer to the summer of 1991 as “the summer from hell.” The PSLU was closed for the summer and despite my pleading to give Dale a nursery place, none was given. This meant that I had no support and was on my own with a child whose autism was becoming increasingly challenging by the day.
One good thing at least was that we had finally moved out of our apartment in Greenock and bid a relieved farewell to the “Eiger stairs.” Dale loved the view of the wide Clyde Estuary from our new house in neighboring Gourock, jumping up and down excitedly whenever the Waverley paddle-steamer passed by. I loved joining in with him in an over-animated way because how could I ignore such a wonderful invitation from Dale? We were not to know in those early days, however, how the geography of our new area would soon affect our lives.
There was a small shop about two hundred yards from the house selling the usual essential groceries and newspapers. While Dale would dash happily ahead to the shop, he would flatly refuse to retrace his steps to go home again, instead leading me on a two-and-a-half-mile circular route back to the house. Any attempt to deviate from this path resulted in a screaming tantrum.
The last time I was to take Dale out on my own during this never-ending summer started innocently enough at home. The weather was lovely, and I thought I would walk Dale to the station to look at the trains, take him to the Wellpark, and then round off the day with a visit to my mum’s. It took the usual hour or so to get Dale ready, and then we set off with Mickey and my survival bag.
I definitely did not want to get involved in the circular route, which meant I would have to avoid the shop. To do this, however, we would have to cross the busy road. Dale was holding Mickey and, uncharacteristically, allowed me to take his free hand, which gave me hope that I could get across the road without having to pick him up, as I usually was forced to do. Standing at the roadside, I spoke crisply: “Dale…we look, we look…No cars…Walk!”
We started to cross, but when we reached the white line in the middle of the road, Dale screamed and tried to pull me back; he had dropped Mickey at the curb. Before I could react, he threw himself down, crashing his head off the concrete in full fury. In order to help Dale, I hurled my survival bag to the pavement like a shot-putter and tried to lift him. But I found it impossible to do so. All I could manage was sit astride him for what seemed like an eternity, cupping my hands behind his head as he tried to smash it against the concrete; I was powerless to stop him from pulling my hair, clawing at my face, and kicking wildly. Cars honked angrily and pulled out around us, and a small group of passers-by gathered at the curbside.
Eventually, the man who owned the shop ran to my rescue. He intervened with the onlookers, retrieved Mickey, and handed him back to Dale. Then he helped me get Dale up, and a kind lady gave my bag back to me. This process was accompanied by comments from the onlookers, “That kid needs a damn good spanking,” or “Disgusting behavior.” For once I couldn’t ignore the comments and rounded on them furiously, “The only thing that’s disgusting is the way you’re all gawking at a handicapped child.”
I hate using the term handicapped, but it seemed the only way I could get the message across to the public and occasionally elicit some sympathy and help from them. Even so, on other occasions the word would draw the response, “He doesn’t look handicapped to me.” Autism is often referred to as the “unseen handicap” because there are no visible physical features that betray the condition. Sometimes I tried saying that Dale had a “communication problem,” but this would draw blank expressions or replies such as, “He’s got no problem communicating now, has he?” Mainly though, as far as the public was concerned, my son was just a “little spoiled brat.”
In the face of all this, the ongoing debate about Dale’s diagnosis caused me even more stress and grief because even though I knew emphatically that he had severe classical autism, I felt I couldn’t actually say this to anyone because it wasn’t “official.” In the end, though, following numerous futile attempts to explain his behavior, I decided simply to tell people Dale was autistic.
Although to many people this word still didn’t mean much, the very sound of it had the desired effect. Some would show empathy and move on, while others wanted me to explain what autism was, even if Dale was in the middle of a challenging tantrum.
After I’d struck out with the onlookers that day, the shopkeeper gave Dale a big bar of chocolate and helped me to take him home. I remember this incident so vividly because for the first time in ages, I’d let the autism win. Rare moments of kindness like this meant a lot, and when I thanked the man for all he had done, he replied, “You’re welcome. But you really must get help.” What he didn’t know, of course, was that I had been trying to get help for almost a year.
The shopkeeper’s words, although well-intentioned, only heightened my sense of isolation and despair. I went into the house, locked all the doors, and cried—deep, racking sobs, wishing I could find a way out of this hell…wishing I was dead. I loved Dale so much, but while I respected his disability, I hated his autism.
Away in Daleyworld, my son was oblivious to my anguish. I watched as he sat on the floor holding a toy car, rocking back and forth whining. My tears escalated. He got up and stood in front of me, laughing out loud as I cr
ied, such was his lack of empathy and low comprehension of emotions. I felt that day that despite all our efforts to break into his world, autism was now engulfing him—and I was losing him to it.
At last that long summer began to draw to a close and toward the end of August, Dale returned to the PSLU at Highlanders for an assessment period of four mornings a week. Outside of that time, I was now literally a prisoner in my own home with Dale. When I again asked the speech therapist for a nursery place for him in the afternoons, emphasizing how horrendous the summer had been, I was stunned by her response: “We feel that our initial fears that he might be autistic are unfounded.”
“What makes you say that?” I inquired, as calmly as I could.
“Dale is making progress in the unit,” she said simply.
“I’m delighted he is,” I countered, “but it’s such a small amount. Surely it’s not enough to rule out autism?”
Although she conceded that his overall abilities were “low,” her opinion about autism remained unchanged. It was not long after this conversation that the educational psychologist, Mary Smith, told me, “Mrs. Gardner, I think you want your son to be autistic.”
The situation led to numerous arguments between Jamie and me, as well as with the professionals. “I don’t understand why you’re so hung about what label they put on it,” he would say. “Surely the main thing is that he’s getting help.”
“But he could end up with the wrong label and get the wrong kind of help.” I tried to explain my fears that if this happened, he would inevitably be treated as a child with severe learning difficulties. It would then be routine for him to end up eventually in a special school with children with a diverse range of severe disabilities.
Then, in the midst of all this, when Dale was about three and a half, one extraordinarily good thing happened. I was vacuuming the hall while Dale sat watching from a safe distance at the top of the stairs. I suddenly heard a loud shout above the noise: “Mum!” In utter shock and delight, I turned off the machine, looked my son in the eye, and said animatedly, “Dale, Mum’s vacuuming.” He made no reply, so in trepidation I switched the vacuum cleaner back on again. The same thing happened: “Mum!” and I turned off the vacuum, this time showing even more excitement at him calling me Mum.
This process went on for half an hour, with me vacuuming the same few feet of carpet over and over again and Dale giggling in delight every time he interrupted me with a “Mum.” I eventually went to the top of the stairs where he let me cuddle him. I told him, “Yes, Dale, I am your mum, and you are my Dale.” We ended with his favorite tickling game.
After that, he would only occasionally call me Mum, and as with Jamie and the word Dad, it was always on Dale’s terms. While it was wonderful finally to be called “Mummy,” there was still no denying Dale’s lack of empathy or love for me; he would say, “Poor Mummy” at the same time as he was hitting out angrily at me. To put this in context, Dale would often address inanimate objects in the same way as he would us. One day when we came into the hall, he greeted the vacuum cleaner with, “How you doing, vacuum?”
Attending to Dale’s needs became even more of a battle as his rituals and obsessions grew increasingly rigid and unpredictable. Just as I thought I had a handle on one, he would change it. Sausages were no longer allowed to touch baked beans on his plate—and I was supposed to know this. If I got the slightest thing “wrong” in his eyes, a tantrum would result.
I started to suffer from panic attacks and would be awake all night. When not dealing with Dale, I would become desperately anxious about what the next day would bring. Jamie witnessed this but was powerless to help because he had to be in a fit state for work himself—and by now had seen me overwhelmed so often.
I had thoughts of wishing I was dead so I could escape this living hell of being imprisoned with Dale and his autism, which consumed me more and more. Then somewhere a voice inside me, probably from Staff Nurse Gardner, was urging me to do the right thing and call his doctor for help. The outcome of the call was that we were no further ahead. If anything, the situation was much worse than the time the consultant pediatrician wanted to admit Dale for investigations and invasive tests which he admitted would be inconclusive and we were to accept that Dale was a child “with nonspecific retardation.”
In desperation, I wrote to Jim Taylor, the head teacher of the Struan House School, who helped arrange an appointment for us to see Elizabeth Newson, a professor of child psychology. We spent a full morning with the professor and talked her through Dale’s history from birth to the present, while a PhD psychology student also made a detailed assessment. Finally, after appointments with thirteen different professionals over a sixteen-month period, and Dale aged three years and eleven months, a diagnosis was made. Dale had classical autism. At last we were to be allowed the dignity of acknowledging our son’s disability for what it actually was.
After a couple of near misses when Dale managed to break away from one of us and run out across the busy road where we lived, we moved once again, this time to a detached house in a quiet area of Greenock, Dresling Road. The fact that the house had more bedrooms appealed to us; we were still clinging to the hope that we would one day be able to give Dale a little brother or sister so he wouldn’t be alone in the world. Although we settled in very quickly and were surrounded by wonderful neighbors, many of whom were to become good friends, there was soon another near miss with Dale.
Shortly after we had moved in and before all the back fences were erected, I was watching Dale playing in the garden. The sun was shining, and I decided to give him a change of scene and take him to the local park, which he loved. I brought his coat out into the garden, suggesting, “Dale, let’s go to the park.” Showing him the coat meant he knew he was going out.
Dale followed me into the house to the hall closet, where I told him, “Dale, Mum will get her coat, and then we can go to the park, OK?” As I reached into the closet for my coat, Dale angrily responded, “Don’t say OK!” and slammed the door shut behind me. It was a small closet, with no light, and I quickly felt around, only to discover there was no handle on the inside of the door. I had no way of getting out without Dale’s help.
I came across Jamie’s toolbox and fumbled about trying to find something that would free me but to no avail. All the while I was shouting to Dale, calmly at first, “Dale, please open the door for Mummy.” We always kept the front door to the house locked, but then I remembered the back door was wide open, and without fencing, there was a direct route out onto the street. Panicked and desperate, I pushed my shoulder against the closet door, which only produced a very sore shoulder.
I got no response whatsoever from Dale, and all was quiet until I heard familiar music coming from the TV in his bedroom. I would never have believed I could be so relieved to hear the Thomas signature tune. Time passed and when the music stopped, my anxiety levels soared again. I shouted and pleaded with Dale to open the door, but all I heard in return was a deafening silence.
I screamed, “Help!” as loudly as I could, in the remote hope that a neighbor or passer-by might hear me. No one did. Then I heard a car honking and feared that Dale was on the road. I became a wreck, collapsing in a heap, sobbing.
After about ninety minutes and entirely without warning, the closet door opened and there stood my son, laughing heartily. I was so relieved that he was unharmed. Then I grabbed him, shouting, “Don’t do that to Mummy.” He didn’t understand, of course, and I just hugged him, glad to be free.
Jamie came home that evening and asked, “What’s the damage today?”
“We need a handle on the inside of the closet door,” I promptly informed him.
Thankfully, our fences were erected the following week and Dale’s outside environment was at last safe. It was not long after this time that the brain tumor health scare was discovered.
It seems strange to consider that it was this very consultation that led to us taking time out to visit David and Isobel, whi
ch set in motion the chain of events that brought the extraordinary Henry into our lives. When I think back to the long, painstaking days where all involved worked so hard to try and help Dale, I am thankful we had managed to get him to a level where he could have a dog in his life and he was able to understand how to play with Dougal and Barney on that special day.
4
Henry: A Really Useful Dog
On the way home from Val’s, on that Friday in February 1994, I sat in the back of the car beside Dale, with Henry on my lap. Dale seemed quietly pleased as he stroked the pup, chanting, “Henry, Henry.”
That night, Jamie and I had to go out for dinner with friends who were leaving the area, and so Mum and Dad came round to watch Dale and Henry. They were used to dogs, but still had a busy evening thanks to the games that had ensued between their grandson and his new companion. I was delighted to hear that Mum and Dad had witnessed the same spark as we had seen when Dale had been with Dougal and Barney, and there was no doubting that poor Henry was as exhausted as they had been.
I looked across at our new pup, curled up in his bed, and thought how cute he looked when he was asleep. Then I noticed something different. The fleecy lining that I had bought for his bed had been thrown across the room and Henry was now lying on Dale’s blanket with patterned trains on it. I kept this in the lounge closet for the rare occasions when Dale burned out on the sofa; when Mum had tried to settle Henry down for the night, Dale had tossed away the fleece and fetched the train blanket instead. He had then proceeded to lift Henry and wrap him in the blanket, saying, “Bedtime, Henry.” Mum and Dad had been pleasantly shocked by this unexpected communication, and of course I was thrilled. Even Jamie couldn’t ignore that our little pup had made an impact already.
We woke up the next morning to two things: the surprise that there was no Dale in the middle of our bed and a lot of noise from him downstairs.
A Friend Like Henry Page 4