All Because of Henry

by Nuala Gardner

  Nevertheless, he was determined. He arrived at Glynhill punctually and ensured he kept up his perfect attendance record. This meant a rise at 7 a.m. sharp, although he did not start until 9. He kept strictly to his routine of a daily shower, and I ensured his royal blue college polo shirt was clean and ironed. Like many people with autism, Dale had a slight obsession with hygiene. Sometimes, when stressed, he would shower twice daily, until the hot water ran out. It helped alleviate some of his anxiety. Anyway, showering in a teenage lad was preferable to the aversion some have!

  He left home at 7.40 a.m. on the dot for a bus to Greenock Town, then a connection to Glynhill. We gave him taxi money to ensure he got to Glynhill with time to spare, and reduced pressure. Weeks later, he chose to tell me that he walked the two miles from Greenock Town to Glynhill, only taking the taxi on rainy days. He pocketed the money, which I thought a fair cop – most astute!

  It was such an exciting autumn for all of us. From my perspective, the positive book reviews continued and I received letters, both heart-wrenching and uplifting, from parents and professionals. But things between Jamie and me grew increasingly frustrating. Sometimes, Jamie would hand me over a batch of mail, wordlessly. I tried to show him the letters, let him see how Dale’s story had touched these people, and how, in turn, their tales were touching me. Sometimes, he just didn’t seem to want to know. Somehow that wasn’t as bad as it seems now. I simply didn’t have time to be hurt . . . or perhaps, more truthfully, I didn’t have time to know I was hurt. There was too much to do. Too many painful stories. Too much hurt everywhere. Too many people who needed help. People who needed me.

  A regular feature of the mailbag was correspondence from parents seeking advice on how to find and use a dog to help reach their own child. I advised them as best I could. Curiously, I had never really considered the strategies I’d used with Henry and Dale. I just did it!

  That October, I became aware of a real need for some kind of dog-autism programme. As I wondered how to devise something suitable, I received an email from a friend who had stumbled across the Autism Assistance Dogs (AAD), run by Irish Guide Dogs for the Blind (IGDB) in Cork. This charity was placing purpose-trained, mature dogs with families of children with severe autism throughout Ireland. I was intrigued, and checked their website. What I was to discover hooked me. I phoned Neil Ashworth, their autism assistance dog training manager.

  As fate would have it, Neil had read my book and he was planning to contact me! We both wanted to develop ideas, with Dale’s guidance, knowing we had an advantage: he could explain exactly why Henry worked! His recollections, both good and bad, were vivid. How was it working in Cork?

  Their model was derived from the Canadian programme, National Service Dogs, developed around 1997, in which dogs were assessed and trained to a similar standard to a guide dog. The temperament of any working dog has to be exceptional, and autism dogs were trained, specifically, to cope calmly with the difficult home environments and extreme behaviours that accompany a child with severe autism. Amongst his many duties, the dog has to keep the child safe outdoors and in public places with their parents; he must assist at busy road crossings – many children with autism have bolting behaviours and no sense of danger. They may throw themselves to the ground, and more, much more – just as Dale had done.

  The (fully registered) AAD dog is trained to stop at the kerb and maintain a strong anchored “stand” position until given the command to move. The child is safe because he or she wears a comfortable belt with a lead attached to the dog’s harness, and so the child stays too. Neil explained this model was now being adopted in many countries, including England. This was not how Henry and Dale had worked, but I saw we had much to share and learn together.

  Then . . . the invitation I couldn’t refuse! Neil was about to attend an Assistance Dogs International Conference (ADI) and wondered if I’d be interested in also attending. The working dog field throughout the world was gathering. In Frankfurt! I wanted to learn everything from them – it would be crazy not to! They had decades of experience. When Dale’s autism exploded in February 1991, the radio reported that a young American non-verbal autistic boy had been taken swimming with dolphins. He spoke for the first time. This may be integral to our current understanding, but then it was revolutionary! Certainly, I have always been aware of animals’ therapeutic value – indeed that has been known for centuries. Throughout my childhood, cats, dogs, goldfish, mice were part of our household – even the occasional injured wild bird was nursed back to flight. Back in Dublin, visiting my mother’s childhood home, our domestic zoo was expanded by chickens, donkeys and rabbits, stray cats and dogs. A regal cockerel stood in charge of the yard. He was also the household 6 a.m. alarm! My parents couldn’t lavish me with toys and luxuries, but instead we had the joyous benefit of all sorts of animal contact. What a legacy!

  Now, I understood my challenge. I had to develop a programme encompassing not only the child, but the whole family. It had to be both inclusive and individually tailored. However, I was determined not to lose sight of another important figure in all this! I had been meticulous with Dale, ensuring that Henry’s needs were met. His dog was a living, sentient being, for no matter the severity of the human condition, an animal is no cuddly toy. I didn’t know where this would go, but I was putting my pack on my back for the journey, and was both thrilled and privileged. The possibilities flooded . . .

  Henry’s legacy had begun!

  A week later, I caught the plane from Glasgow to Frankfurt Hahn. Neil would meet me. My flight was quiet, so I had privacy and time for reflection – enhanced by a couple of glasses of red wine! I thought of my wonderful parents, my saviours throughout the hellish years. Now, as a guest of the Irish Guide Dogs staff, I felt my mum’s Irish strength touch me. This was fate!

  Neil and I greeted each other like old friends, yet he seemed a little stressed. In our taxi, he warned me we were in for quite a drive – 125 miles! No wonder he was flustered. When we arranged our flights, we both assumed there was only one airport in Frankfurt. Neil had arrived at Frankfurt International and me at Frankfurt Hahn. Hence the epic cab journey!

  While we cruised through the small hours, Neil told me he had spoken to Dale, and he was amazed at what he had learned. Aware of the two-airport problem, Neil phoned my home and Dale answered. During the call, Dale interrupted Neil, with an apology, and said goodbye. Neil overheard Dale saying, “Dad, I think you should talk to Neil. I think there’s a problem.”

  Neil was stunned. He hadn’t explained to Dale about the mix-up, but he had recognised from his tone that something was wrong. My son’s perceptiveness was not lost on him.

  The journey whizzed by as we discussed the possibilities for my programme and ways to enhance the Irish one. On arrival, we grabbed a couple of hours’ sleep before the three-day conference began. Later, as the hotel foyer filled with delegates, I thought how much Dale would have loved all this – because I did! There were many professionals but there were also delegates with their own assistance dogs. What a catalogue of canine working dogs, golden retrievers, Labradors, Lab retrievers, German Shepherds, Inuits and even the occasional small variety! I was so excited; I’d a real sense of belonging.

  Suddenly, Neil greeted a couple, Alberto Alvarez-Campos and Jane Kefford. They had known each other for years, having worked together in England. He introduced me, and I sat beside Jane, knowing that the guys had a lot of catching up. Jane explained why they had come. Both had worked for twenty years as guide dog trainers in England, where they met and married. A year ago, they moved with their two young daughters to Zamora, Alberto’s hometown, in Spain.

  I felt an increasing affinity. The passion and professionalism just oozed from her. Alberto had over thirty years of experience working with assistance dogs, and he had also trained animals for films, drug searches and the police. She understood my anxieties and excitement, having herself been thrown into the deep end. She had so recently adapted to life in Zamora
, settling her family, learning Spanish, and she had missed her own career terribly. Just as Henry came into my life, changing it forever, a friend of Jane’s offered their family a beautiful Golden Retriever. It was apparent immediately that it would make a wonderful guide dog. Seeing Alberto’s passion and enthusiasm for the dog, Jane saw that their lives were about to change forever. That was the seed that was to grow to become their new charity, PAAT (Spanish for: Dogs for Assistance & Animal Therapy). Just as I was on a mission for Dale, PAAT were on a parallel journey. They had had years of observing the positive impact that dogs had on their clients’ lives, but perhaps they had witnessed something more, cases where dogs had shown the ability to master new skills spontaneously, skills for which they had never been trained!

  Jane recalled partnering a man with his first guide dog. His young son suffered from severe asthma, yet he had boundless energy. The dog absorbed the boy’s excess exuberance during his playtime and he even slept in the lad’s room. His parents noted he settled better in that situation. One night, as the boy’s parents slept, the dog entered their room, barking furiously, pulling at their bed covers until they responded. They followed the dog to their son’s room to find him in the middle of an acute asthma attack. Had the boy not received the medical help he needed then, he would certainly have died.

  Another story affected them profoundly. A female client had a son with communication difficulties, on the autistic spectrum. He needed specialised schooling, and his mother told Jane of her sadness: the only time he ventured outdoors was to get his school bus, and only then because it collected him at the gate. Jane got thinking. Perhaps the boy would walk outdoors, firstly to the shops with the dog in tow. She knew this might be possible, providing both dog and “user” were properly instructed. She put her theory into practice. Soon, it became evident that a strong bond had developed, without significant input from her. When the mother and son, dual-role guide dog in tow, successfully ventured to the shops, Jane recognised the milestone. Here was a life-changing effect on the quality of life for not just the child, but for his whole family.

  I sat, riveted. The reason PAAT were at the conference was to expand their work: purpose-training dogs for autistic children! Something magical was in that Frankfurt air! All of us wanted to utilise the dog in its widest possibilities. Our shared aim was to get the maximum benefit, the best quality of life and independence possible for every child.

  For the remainder of the conference, Neil, PAAT and I stuck together. During those days I attended fascinating workshops and learned so much about how guide dogs were trained to help clients with sight loss. I thought I would feel like a fish out of water, but I was wrong. I already knew visually impaired patients often had an innate or acquired heightening of their other senses. This is not dissimilar to the sensory experiences of certain people with ASD. Further, sight loss clients had similar spatial awareness difficulties. Such invaluable learning when I came to develop my own programme! However, it was a lecture on the final day that really blew my mind, a lecture given by the eminent English dog psychologist Daniel Mills.

  I was transfixed from the start, as my experience rang true. Daniel then revealed his latest research, leaving me desperate to talk to my son. Daniel projected images, showing that all dogs have just five recognisable facial expressions. This was stunning. Unknowingly, Dale had described Daniel’s science perfectly already, as he had summarised in my first book:

  “Henry had a wise look on his face. I could understand Henry’s feelings from looking at his eyes. Henry’s face only had slight changes with his expression so I understood them.”(From “In His Own Words”, A Friend Like Henry.)

  After the four days with my new friends, I struggled to leave. Jane told Alberto she wanted to take me back to Spain. Talking to me had had the effect of a light bulb exploding in her head! I was expressing feelings and thoughts she had carried for years. I gave them a copy of my book and we hugged each other, exchanging their traditional, two-cheek goodbye kiss. I hoped that we could stay in touch – we were soul mates already – but deep down I wondered if we would.

  I secreted a lovely hand-painted ceramic horse bank in my luggage for Amy, and dashed for my homeward flight. She was to find it inspirational in her own drawing . . . and I had a lot of mental unpacking to do!

  I began immediately. When I told Dale all, I left out one important issue. Whilst I was thrilled by all the positive coverage of my book, I was becoming increasingly frustrated by a regular comment of this nature: “We don’t know why dogs have this effect on autistic children.” Dale had explained it beautifully already! After Frankfurt, I could now clarify, but Dale’s explanation was a world first. Today, there is abundant supporting evidence.

  There was a little experiment I had to try, courtesy of Daniel Mills. Without telling him why, I asked Dale to draw the facial expressions he recognised in Henry. He produced pencil drawings, showing four Henry expressions – happy, content, excited and worried/sad. Perplexed, I queried, “Dale, did you recognise only these four expressions?”

  “Yes, Mum. That’s all I remember, although there could be an angry/snarling face, for some dogs, but remember, Mum, Henry was a golden retriever!”

  This correlated with everything Daniel Mills had found, and fitted with all that Dale had told me earlier. It was no surprise that both my children, and others, would find it easier to connect with animals. Whether it was Dale and Henry or Amy’s horses or dolphins, unthreatening, non-verbal animals were easier for people on the spectrum to interpret and predict. Add in their wonderful temperaments and patience, and why should it be a surprise that animals can provide a key for some children with autism that we neuro-typicals can hardly approach. Is it not time we tried to learn?

  Now with family life resumed and Dale settled, I started to write down ideas from all I gleaned in Frankfurt. Once again I mused on that German magic. Was it by chance my path had crossed with PAAT, or was it something more?

  Life was zooming on and Christmas approaching fast. Dale’s “monthly progress indicator” assessments at Glynhill showed that his timekeeping and attendance were, of course, Highly Satisfactory, but in other areas of his assessment his progress was recorded only as Developing. When Dale returned to college and Glynhill in the New Year, I observed a daily deterioration. His well-being began to trouble me. He had stopped acknowledging me when he came home, going straight to his room. Hours later, I would go up to check if he was all right. Throughout these early weeks, he did not express any concerns to me or to anyone, but clearly, something was very wrong.

  One day I disturbed him in his room and noticed there were course papers strewn all over his bed. Was he attempting to complete an assignment? Four hours would pass, and he wouldn’t or couldn’t take a break. After a couple of weeks of worrying terribly, I interrupted: “Dale, is everything all right at college? Do you need help?”

  His reply relieved me, but was grim. “Mum, I’m really tired and finding college work totally confusing and difficult. My tutors have noticed I’m struggling in class and at Glynhill. It’s so bad they have been advising me to think about leaving.”

  I’ve seen my son in some bad places over the years. This was as dire as it came. For the first time in Dale’s difficult life, I really feared for his health. He was so fragile. I sat on his bed, with him staring at his laptop screen blankly, as if the words on the screen were written in Chinese. It broke my heart, seeing my amazing, intelligent son in such turmoil. Yet, even in that despair, I could tell he didn’t want to be beaten.

  “Dale, it’s okay. No matter what the problems are and how you feel about college, you will never fail in my eyes, nor anyone’s. Please let me help you get things sorted. Please, talk to me.”

  He opened up, but his tutors’ “advice” began to trouble me more.

  “Dale, why didn’t you let me, or someone from Prospects, go with you to the meetings you were having with college staff?”

  His reply stunned me. “Mum, I d
idn’t know the tutors were going to talk to me – twice in the last two weeks. A couple of tutors just cornered me, advising me that I should think seriously about leaving.”

  Trying to absorb this, I reassured him that while he was capable of making decisions and having impromptu discussions with his tutors, I thought it was unfair for him to be approached without notice and unreasonable that he had been given no opportunity to discuss such a serious matter with Prospects, or me, first. I told him to forget any pressures in his academic work and at Glynhill. If he was spoken to again, he was to inform the tutor that he wanted to discuss the situation in the proper context before doing anything. He was not to worry; I would contact Anna Williamson. Once she had fully investigated this, with his full involvement, then and only then would he leave the course. If that was his choice.

  Dale knew Prospects would intervene and guide him to the best outcome. In the first week of February, while waiting, his behaviour deteriorated dramatically. He came home from Glynhill disheartened and anguished. “Mum, the children’s behaviours at Glynhill are very difficult to manage. Staff are constantly challenged, keeping them under control.”

  I reminded him that the children had problems caused by their environment. They needed a similar approach to some of the children he met at Barnardo’s. He understood that it wasn’t their fault, and that the lack of positive parenting affected many. Trying to reassure him to keep going, things reached breaking point the night before he returned to college.

  I tossed and turned in my bed, just as, undoubtedly, Dale had done too. I heard him cough all night. I tried to help him with what sounded like a dry, irritable bark. I made him take regular sips of water, offered to make him a cup of tea, gave him cough linctus. Nothing worked. I knew this was caused by anxiety, though I didn’t tell him so. This happened in his early adulthood when he was stressed, but this was the worst bout yet. In the morning, I worried as he set off for college, his eyes dark and sunken, blinking furiously. He could barely talk for stammering. He had started to tic.