All Because of Henry

by Nuala Gardner

  I tried to imagine how he felt, faced with the daily deterioration of his condition, having to rely on his parents to help him manage the most basic things, the things we neuro-typicals take for granted. Consider beyond the obvious aspects of caring for a disabled person’s daily needs. Think about all those small, endlessly repetitive tasks: Victor needed doors pushed, drawers opened and closed, lift buttons pressed, newspapers opened, mobile phones and, well, everything really, collected for him. Every day, countless times, his weak grasp would loosen, causing him to drop keys, money, and that needed a carer with the patience of a particularly special saint. He required assistance to unzip and remove his jacket, put on and off his socks, little things in themselves perhaps, but things which mounted up over the days, weeks and years. His saint had to be physically up to the job, but of course he had no saint to hand. He had his parents, who were becoming physically and mentally exhausted. For Victor, that kind of dependence on his parents added another terrible burden to his condition’s luggage. He became increasingly demoralised, quiet and withdrawn. He stopped going out socially, and his parents despaired, watching helplessly as their son’s loneliness increased and his quality of life disintegrated. Desperate to help their son, they contacted PAAT. Perhaps that saint was on hand after all, one with a fur coat and a wagging tail. PAAT purpose-trained an assistance dog to do all those wearyingly repetitive tasks. Undoubtedly this transformed Victor’s quality of life, giving him back his much-valued independence and offering his parents some of the respite they needed.

  Is it possible that a human could have been employed in that role? Possible, but ask a person to pick up a pen, fetch a phone and do all these tasks countless times a day, and eventually it will take its toll. By contrast, the assistance dog will thrive, working for its owner, receiving the constant rewards of affection, as well as developing the strongest bond possible with its master. All guide and assistance dogs are trained intensively to be great at their job, and that can be measured, but there is so much more: the emotional well-being and companionship they give to their owners is immeasurable.

  As we sat enjoying the delicious food and wonderful companionship into the wee sma’ ’ours, it was in fact Victor who snitched back the conversation from Carmen, and his love of life shone out from him. It struck me that night that while there was two disabled people at our table, because we were all at one with integration there was no disability to be seen!

  The next morning we set off for the two-hour drive to Madrid. I put on a tailored dress because we were going straight to a popular restaurant, where we would meet Rocio. She was translating for me, as a reporter from Spain’s biggest national newspaper was doing a feature on my book. The finished article, which was to be tied in with a review of our meal, a weekly feature, would cover the entire back page. It was a pleasing device, adopted by the paper to give the story an informal feel. Certainly, I felt very relaxed! At the end of the meal, I thought I might roll home, having eaten more that week than I had in months! To complete the article, the photographer captured a lovely picture of me with Bruno.

  We had an hour to spare, so I sat with Rocio and went through what she would be translating for me at the conference. I had already sent her an electronic copy to allow her to familiarise herself with my talk, and I had described the photographic resources I would be using, so she had created an excellent mental picture. Alberto produced a memory stick, loaded with pictures of PAAT children with their autism therapy dogs, and he popped that into my laptop to let us see them.

  The first picture made my jaw drop. It was stupendous. PAAT had trained a golden retriever for severely autistic non-verbal twin boys. Both had bonded with and benefitted from the dog, in their own uniquely different ways. This particular picture of one of the boys had been taken by their parents when the twins met their dog for the first time. The body language between the boy and the dog spoke volumes, no words were necessary. The dog sat relaxed, and with its tail stretched out, and its back providing the perfect leaning post for the child, who laid against it, spine to spine, head to head. The trust and bond was beautiful. Both had their eyes closed. They were at one.

  There was more to come. The next one, of his brother, hit home just as forcibly, yet for different reasons. Here was an image I had seen countless times before, “The Golden Pillow”! In this one photograph was PAAT’s evidence to support Amy’s interpretation and the Mira Foundation’s research in Canada, of the power the right dog has with autistic children.{1}

  Both these boys had had bolting behaviours with challenging tantrums when they were outdoors. I am well aware that keeping one such child safe is nigh impossible for parents, but two? Unthinkable. Now when the boys went out, they both had their leads attached to the dog and they stayed with that dog. They were calmer, and enjoyed going to the park, sharing their food and their lives with their dog.

  One of the boys has dyspraxia, affecting his coordination, and he had not previously been successfully toilet trained. In their home, the dog wore its harness, which had a small handle on the centre to allow the child to support himself when mobile. This improved his walking balance and pace. The dog even accompanied the child to the toilet. Lo and behold, a few weeks later that lad was successfully toilet trained.

  It was wonderful seeing the children with their special dogs, proudly holding onto their coloured leads. Unsurprisingly, royal blue and red were the most popular. All the children were happy being with their dogs. One was brushing her pet, another was giving it a treat, and yet another little girl was simply content, with her dog lying on her bed beside her. All of those children gave their dogs appropriate eye contact, just as I had witnessed before with the children who had piloted my own programme. There were so many positive changes, but one issue stood out: none of those children was physically being attached to their dogs!

  All the children were relaxed, just as Dale and Keir had been, and none ran away when outdoors. Parents reported their children’s overall behaviour had improved. Social belonging and inclusion increased because the dog reduced the stress for the child when they ventured out. The animal’s presence facilitated positive interaction with the public. Interaction with parents and siblings also improved, and the dog helped the children reach a resolution more quickly when the inevitable tantrums occurred. The whole family gained. Unquestionably, the children had bonded with their dogs, and the pictures were both humbling and gorgeous. Looking at them brought back vivid memories of a younger Dale with his Henry. I was in no doubt that I was once again seeing Henry’s legacy. I stole a few moments, whispering, “Thank you, Henry. Thank you for everything. I love you.”

  Having said adios to Rocio, Alberto asked if I wouldn’t mind visiting some parents, called Angela and Oscar, who lived in Madrid. Their daughter, Lucia, had had a PAAT Assistance Therapy Dog (ATD) for a year. Lucia was six with severe non-verbal autism, poor comprehension and challenging behaviours. Alberto wanted to see how she was progressing with their dog Tiffany, a three-year-old Labrador. Tiffany’s calm nature and autism training were perfect. Angela and Oscar loved Lucia so much that they couldn’t bear to say no to her. Day after day, they tried to keep her as happy as they could by not challenging her autism. Instead, they submitted to it. PAAT had spent hours and days teaching them how to manage the condition, but despite this and all her teachers’ efforts, nothing changed. It simply broke the hearts of these loving parents, seeing their daughter’s distress when things didn’t go her way. Unfortunately, that was almost every hour of every day. As a result, Lucia took ownership of her home environment. She needed to try to control everything in it, effectively using her parents as her remote control device, in an attempt to try to make sense of her environment.

  The consequences were dire. Angela, Oscar and Tiffany were at the mercy of Lucia’s ferocious and frustrated autism. Her lack of “theory of mind”, known as “mind blindness”, caused her endless distress, because she couldn’t understand that her parents’ thoughts, intentions a
nd emotions were not the same as her own. She couldn’t comprehend that others didn’t know what she wanted. She therefore had no reason to communicate her wants. She found her parents unpredictable, and empathy was beyond her.

  This beautiful, tormented child communicated the sensory chaos and confusion of her world. When inevitably it went wrong, she did that in the only way open to her, through intense high-pitched screaming, screeching and forceful crying. She cried until her throat was raw, throwing horrific and challenging tantrums virtually twenty-four/seven.

  Alberto felt he needed to prepare me, as Lucia’s suffering was soul-destroying to witness. Understandably, her parents were reaching breaking point. While this was a huge worry, there was the added concern of Tiffany’s welfare. Lucia was sufficiently fortunate to attend a small school for autistic children in the heart of Madrid. The pupils there had different levels of autism, some verbal and some not. The educational approaches were condition-specific and the teachers’ methods were the same as those used at Hinderton. Good practice has the same principles, wherever it occurs in the world.

  Lucia’s parents had completed a Hanen course, which teaches families how to engage with and help their child learn to communicate.{2} Those same methods were to be used at home and at the child’s school, giving the needed consistency. Yet Angela and Oscar’s desperate attempts to try to interpret her needs and communicate “for” her had made their daughter the autistic master of the home. Tiffany had made a difference when she was outdoors. Lucia stayed by her dog’s side, where before she would have spontaneously run anywhere – into the line of a car, anywhere she desired – she had no sense of danger. She could now be motivated to move on through her dog. Tiffany had certainly enhanced their family life, because they could at least stroll together in the cool evenings, giving her parents some much needed respite. Indeed, Lucia couldn’t bear to be stuck indoors.

  When we arrived at their top-floor apartment, Angela greeted us warmly. As I entered the hallway, I noticed there were beautiful wooden floors throughout. I removed my shoes and went into the lounge, ready to meet Oscar and Lucia.

  When I visit a family, I generally wear comfortable jeans and flat shoes, knowing I will be working on the floor or with them, in their garden, on their bed – in fact, anywhere and everywhere the child might lead. Slowly, calmly and patiently, as we play, the child allows me to interact with them, and – albeit on their terms – to share “our” playtime.

  When Lucia saw Alberto, she screamed, cried out in horror while she manipulated both her parents to have them remove us from her home. We ignored her efforts, and sat silently while we watched her trying to control everything that was happening in her domain. She was distressed and in autism crisis, desperate to have her parents help her make sense of her environment. Oscar and Angela tried desperately to interpret her needs. They grabbed her favourite books, seized her box of social pictures, sieving through them, hoping, pleading, “Lucia, Lucia, what do you want?”

  They tried everything to console her and to interpret her needs, but their efforts were in vain. Her screams intensified. Alberto and I remained calm. When she approached us, only one of us spoke, gently, quietly, concisely, in order to allow her to express her needs, or at least to show us what she wanted. When her efforts to control us proved unsuccessful, Lucia switched to her parents.

  Alberto had been right to warn me. Witnessing this child’s distress at being unable to communicate and hearing her vexed screams was devastating. Lucia had become the holder of her parents, using them as an autism remote control, programming them to channel her needs. I felt she did this to reduce the sensory chaos in her home. What I was seeing in that child’s overload was what Dr Wendy Lawson has compared to “an untuned television”.{3}

  We understood why Lucia screamed. She had to try to drown out the overwhelming interference in her home, to enable her to survive the terrifying days that autism gave her. Her parents’ efforts to try to tune into whatever she wanted in order to pre-empt the screaming was being lost in translation. There were times when she wanted her “programme” repeated for hours on end. She particularly liked to make her Papa draw a picture for her; she gestured, giving him a pen. Papa would duly start drawing, but then it would have to be a montage, endlessly of the same picture, before Lucia suddenly would decide to change the programme.

  Throughout, we noticed Tiffany in the kitchen, lying on her comfy bed, resting quietly, with her big brown eyes wide open, and she looked so forlorn. She had been trained to cope with the extreme environment created by an autistic child, but the child should really improve with their dog so the home would be better for both! Sadly Lucia’s home life hadn’t got better and I shared Alberto’s worry for Tiffany’s welfare. The howling intensified and, throughout, Alberto was pleading, “Be at Lucia’s eye level. Say her name, just once. One parent, one voice. Be calm, use concise words. Be consistent. Give six seconds to process, then repeat.”

  Such was their love for their child that they couldn’t, or wouldn’t, listen. I sat quietly, observing the signals of anguish broadcast by these parents. Simultaneously, I was humbled by Alberto’s unstinting efforts to help them. Suddenly, Lucia lowered the volume and paused her screeching. There was an interlude where she looked out of the window, indicating that she wanted to go out.

  In despair, Alberto asked, “Nuala, what do you think we need to do here? The dog seems miserable. These parents are exhausted, lost. I fear for their future.”

  I couldn’t disagree, telling him that they needed to press the delete button, rewind and start again, right from the beginning. They had to act as if Lucia had been newly diagnosed. That despair and mental exhaustion was palpable. I too was afraid for their future. It was time to do something I’d done countless times before when I needed to help my own children. I took a risk.

  “Alberto. Enough of this. It’s time for some tough love. Can you translate for me, please?”

  Beating heart battering on my ribs, I said, “Tell them if they want Lucia to be like she is now when she’s sixteen – bigger, stronger, louder, more distressed, still unable to communicate – tell them to carry on with what they’re doing now.”

  Alberto delivered my words with conviction. I could see shock unfold, and their anxiety increase.

  “Tell them it’s not too late, but they need to change. Right now!”

  Lucia, like any child, with or without autism, needed strict boundaries to allow her to make sense of her environment. Reassuringly, he informed them how I had taught Dale; it had been hard and had meant our family had endured many of his challenging tantrums before he began to learn. Lucia needed to understand, like Dale, the two most important words of language were yes and no. Yes, brought good things and no means no . . . and is always one hundred per cent final!

  When Lucia sought Alberto’s help, he gave her clear body language, and then turned away with his hand up. That meant, “Lucia, Papa. Go to Papa.”

  When she approached me, I did the same.

  “Lucia, Papa.”

  She gripped a cartoon video in her hands – her ultimate obsession – determinedly trying to make us put it on. Almost immediately, she learned that she wasn’t controlling Alberto or me. So, she calmly approached her Papa, gesturing at him to put the video on. I took another risk. “Oscar no! Lucia do it. Alberto, tell Oscar to say, ‘Lucia do it.’”

  Her papa didn’t give up, despite all Lucia’s attempts to twist him. Then, just as he was about to concede, she confidently popped the video into the recorder, and she was delighted to see her cartoon appear on the screen. Immediately, I clapped my hands, and everyone joined in. She rewarded me with direct eye contact! I gave her a Makaton two thumbs up, with a tone of voice that communicated good girl! Seeing the smile on her face and her “acceptance” of our hand clapping showed us all the way forward. She seemed to understand. Now we were getting somewhere.

  “Alberto, tell them now Lucia can do it. They should never do ‘it’ or anything
else she can do . . . ever again.”

  I saw that Oscar and Angela were pleased by their daughter’s astuteness, but with a worried tone Oscar asked, “What if she screams and tantrums?”

  Alberto was firm.

  “Let her. It will pass. She can do it. You are preventing her from being independent and making her own choices. Let Lucia communicate!”

  We showed how our calm, child-led approaches were getting through and her comprehension of basic language was better with the reduction in sensory overload. Just as things were going well, she tried to get her mama to move the cartoon past a sequence she didn’t like. For the first time, Angela turned away, putting up her hand. Calmly, she said, “No! Lucia do it.”

  And true to form, she did, with another jovial round of applause as a reward.

  With Lucia settled, Alberto advised that it might be better if Tiffany were taken away for a trial period, just to let them start again and allow them to turn things around. Immediately, Angela broke down. She wept as if she was losing her second child, which, in a sense, she was. I held her in my arms as she cried, frustrated that I was unable to comfort her better because of the language barrier. Her grief was devastating. It broke our hearts, but still, we concluded that with the triumphs we had seen that day, these loving, wonderful parents just needed a little more time to adjust.

  Throughout our visit, I sat on the floor and played with Lucia, with Tiffany joining in. The potential she had just flowed from her. She was such a beautiful, clever child. We advised Oscar and Angela to work closely with Lucia’s teachers, because their approaches at home were now the same as those used at school.

  We left the couple somewhat shocked, but also with the gift of hope. It was emotionally draining to be so forceful, but I felt humbled and privileged to be able to take those steps. After all, I was once where they were, twenty years earlier, when I had lain in the foetal position on my own kitchen floor. I was desperate, without hope. I was staring death in the face because I couldn’t reach my son. Thankfully, Henry did what I could not.