All Because of Henry

by Nuala Gardner

  Alberto had felt because I was a mother maybe Lucia’s parents would accept my advice. I think he was right. Neither of us were in any doubts though. We were no miracle workers; Angela and Oscar had a mammoth task ahead. They would need every ounce of strength they possessed.

  When I arrived back at my hotel room to change for evening dinner, I wasn’t just emotionally wrecked! I’d stepped out, every inch the smart professional, and I’d returned, well, what we in the West of Scotland might term “complete mink”! Those expensive glossy tights were covered in ladders. I didn’t give a toss! Smiling to myself, I unpeeled them and chucked them in the bin. Every shred had been worth it, playing with Lucia and Tiffany. For the first time in a long time, it felt great to be doing work I truly loved and for which I was respected.

  At 10 o’clock, it was a stiflingly hot evening, with Madrid’s pavement cafe bars swarming with people, chilling out, eating and drinking as if the night was young. For the Spanish it was! Beni and Alberto wanted the coolness and peace of indoors, but I wanted the luxury of being able to soak up the atmosphere, with the rare opportunity to sit in the perfect climate and to eat outdoors. After all, I’d come from Gourock, a place not known for a lot of late-night outdoors dining . . . for some reason! As we waited for our meal, I could see Alberto was still stressed about his day and the emotionally draining work he was trying to achieve through PAAT.

  “Alberto, have a beer with me. Relax, we will get there! Slowly, things are changing.”

  Checking his phone to view the week’s activity on PAAT’s website, he showed me. “Nuala, look! Two hundred enquiries this week. Desperate stories from parents wanting an ATD. We have virtually no funds! Demand is overwhelming.”

  He forced himself to lighten up.

  “Nuala, I am so depressed, I could kill two guide dogs.”

  How Beni and I laughed!

  “Alberto, chill. Eat your meal! Drink your beer.”

  His passion for his work never faltered, although throughout that dinner his phone didn’t stop. Taking his last bite, he checked his phone again. Two texts had come through. Reading them shocked us, given the joke we’d just shared. The first was from Rocio who had been told that her first beautiful guide dog, Macey, whom she loved so much, had died earlier in the evening. I felt for Rocio, because I completely understood that the bond a visually impaired person has with their dog is one of the strongest known. Macey was as special to Rocio as Sir had been, and still is, to me. Like Sir, Macey had transformed Rocio’s life and given her true independence.

  If that news wasn’t bad enough, the other text was equally alarming. It was about another guide dog Alberto had recently placed. The client wanted Alberto to know that his guide dog, Rey, was critically ill, and vets were trying to save its life. Rey was a stunning three-year-old white German Shepherd, who was extra-special to Alberto. Out of the hundreds of guide dogs he’d trained, Rey was the best worker he had ever known. He had changed his owner’s life. Prior to having his dog, that man’s quality of life was limited and his independence dreadfully compromised. The client was on holiday when Rey had become dangerously ill, with a life-threatening blood disease, an infection spread by mosquito sand flies. Only a miracle could save him now. It was a matter of waiting. The vets had done all that they could.

  The next morning, we were pensive. To try to comfort Rocio, we emailed her a poem, one which is really special to me, adapting the words so it related to Macey. She replied, saying it had helped her, but she was truly broken by her beloved dog’s passing. She meant the world to her. I understood Rocio’s grief entirely. Six years after Sir’s death, I still see him, running through my thoughts and dreams. I know he’s always going to be there for me.

  18

  New Horizons

  With thoughts of Rocio and Macey, we prepared for the task ahead. Alberto and I cross-referenced our plans, our moves in cyberspace. No small concern, as we had experienced difficulties in Zamora with the technical aspects of our presentation and we dreaded a repeat of that. We looked at each other and nodded. We scrubbed up well! Time to go!

  The conference was in the Circulo de Bellas Artes in the National Library of Spain, an imposingly beautiful nineteenth-century building which houses a remarkable collection of books, paintings and other treasures . . . and today, er, me! As I climbed that ornate central staircase, catching glimpses of opulent rooms through dark doors, and as I breathed the heavy air under gilded cornices and traced a daring finger along carved marble, I wondered, how did I get here? I stopped to look from the tall windows over Madrid, which was golden and beautiful as far as my eye could follow. If breathtaking smacks of cliché, I can offer no apology. It was more than enough to take anyone’s oxygen supply, and somehow, I was there, in all this splendour and with a sense of purpose. I knew who I had to thank for that.

  Tempting though it was to stand and muse on the wonder of it all, as my eyes began to fill, the splendid room was also filling rapidly. Professionals, parents and dogs arrived, and in amongst the masses there was a familiar face with a companion! Bruno, paws tick-tacking across the marble and full of glee at Rocio’s side, communicated in his inimitable, language-crossing style: “Hello, everyone! New guide dog in the room.”

  They were soon followed by Marta, lovely and as strong as ever, then Jane with Oscar and Angela. What holas we kissed! Joaquín was a constant, industrious presence, oiling every linguistic and operational wheel, determined to ensure smooth running. Fundación Quinta was supporting my Spanish book launch.{1}

  Alberto opened the proceedings with his customary exuberance. With the confidence-building Rocio and Bruno beside me, I launched into my talk. We co-ordinated as if we had known each other for months rather than for days. I was both relieved and pleased to see her smile when she recognised images from my PowerPoint. Bolstered and affirmed by the laughter from the audience, I relaxed into the rhythm. I stood confident and secure in the certainty that inclusion should be everyone’s right, and not a privilege for the few.

  When the conference ended, the passion for the cause fired the room. Marta, Angela and Oscar confirmed that they had learned new ideas and were inspired; there was so much to carry forward for their own children. Jane spent time talking with Angela and Oscar, who now seemed far more relaxed and enthusiastic. It was as if Lucia had been newly diagnosed; they were so eager to learn. Before they left, they bought three books, two for family and a copy for the school, which I thought astute. I signed them all. We hugged and hugged. As parents we were forever connected. When I watched them carry off those books, I hoped Henry would help them in turn, as he had me. They now had their own Canine Guide to Autism for Lucia and Tiffany.

  I felt it was the best presentation I had ever delivered. The tummy-filling nerves had ceased, and I checked the time. It was three in the afternoon, lunchtime in Spain! Along the sunny pavements with staff from PAAT, Marta and Joaquín, we crocodiled into a traditional tapas bar. Alberto, never quite managing to settle without more work, grabbed the time to walk with Rocio and Bruno to pursue some guide dog work. Marta and I chatted, surprisingly fast and furiously, using Makaton signs to bridge the language barrier. We clicked like a pair of schoolgirls.

  As usual, the food and the company were outstanding. This was bliss. Just as I finished eating, Alberto delivered his bombshell. I was to record an interview for Spanish television. Suddenly, that extra plate of patatas bravas seemed a little less wise!

  Lunch finished, we made our way through central Madrid to a disused kindergarten. Fundación Quinta had raised funds to renovate it to be fit for purpose as a recreation and rehabilitation centre for adults with autism. Joaquín showed me around, explaining the refit. It was amazing. There were areas for clients to enjoy art and music and to use computers. A major objective was for them to be able to learn new social and independence skills, so a large kitchen featured. The gardens were private and secure. In a grove of mature trees there was an old wooden play lodge. Although modest, it was larg
e enough to allow for the potential creation of separate rooms, a lounge and kitchen area, with the built-in opportunity for adults to practise their independent-living skills in a realistic environment and with adequate support. I was more than impressed by what they had achieved. No similar facilities existed in Madrid. Looking around, I promised Joaquín that on my return to Scotland, I would send a framed copy of Henry’s portrait for the centre reception. I wished I could have done more. So many adults in Dale’s generation had already missed so much.

  Fantastic though that was, I knew I was only seeing the outline. I hoped I would return someday to see the centre bustling with people, because I understood the enormity of the task and the dedication needed to fully establish the project. Buildings are important, but people carry the story. For charities everywhere, from here to our own SA and NAS, people are the lifeblood. Parent power and supporters have improved, and continue to improve, education and awareness of autism. That is why it is where it is today.

  That tapas-turning television interview went smoothly, and Joaquín pleaded with viewers to support the centre. Afterwards, Marta invited Rocio and me to her home to meet Jorge, her parents and her daughter. What great people they were. I saw in that couple a mirror of the support system that once my mum and dad had been for me. She drove us to collect Jorge from her school, which thankfully was an excellent, autism-specific provision. Despite the language barrier, I could see that the teaching practices were highly developed. Marta pointed out her son. Oh boy! He was Dale at the same age – such a handsome boy, with those classically Spanish brown eyes. I had heard so much about how he had improved, and it was great to meet the person to match the tale. Marta had worked hard with him. I knew that. Between them, what memories they stirred.

  I may have been in a different country, but watching this mother interact and communicate with her child, I saw the same rules of engagement, the same approaches. This was bigger than Esperanto. Whilst not diminishing the individuality of the people affected by ASD, there is a universal bond. From Jorge to Amy, Dale, the A-Team, to the young men at Struan, the obsessions, the sensory issues, the difficulties and the truths unite them beyond language and borders. This is an international community. It is fine and noble to consider these matters, but the day-to-day experience of autism at home and abroad leaves little room for such musings! The car stopped, and immediately Jorge ran into a shop, with Marta tearing after him. Not only that, but Bruno’s training needed some fine-tuning. I was pleased that Rocio felt confident with me, as she held onto my left arm for guidance. I reached back into skills I had first learned when I worked in an eye ward twenty-five years earlier.

  I guided her into the shop, warning her that it had two deep stairs downwards. With Jorge now happy, we made our way to Marta’s home, which was accessed by a narrow lift and was a bit of a squeeze for two adults, let alone for the additional presence of Bruno! Throughout, I was Rocio’s eyes. Marta’s parents treated me like a celebrity, insisting I put my feet up on their sofa, and proffering cool drinks, all more than welcome in the blistering heat of Madrid. Her mum had started reading my book, and gestured how much I had captured Dale’s autism. She too caught the Jorge/Dale connection. Rocio sat beside me, while Bruno lapped up his well-earned drink.

  Jorge decided it was now playtime for the dog. His owner didn’t demur, so he launched into a game of fetch, using his favourite cuddly dog toy. Bruno couldn’t believe his luck! The game was set to last a while, until the lad burned him out. He collapsed in an exhausted sleep at his mistress’s feet. In the meantime, I retrieved pictures from my presentation for Marta’s parents. Sometimes images speak where words cannot. As I came to the photo of a sleeping black Labrador, Jorge came back into the lounge, hoping to rouse the shattered Bruno. I couldn’t resist. I showed him the sleeping black Labrador on the screen, which he took a fleeting interest in, then I signed, “Jorge, no!”

  I indicated that the dog was sleeping. He regarded him momentarily. I signed sleeping, in the hope that he would leave Bruno be. To my relief he did and, calmly, he went to his own room. Ten minutes later the doorbell rang, and in came Alberto with Beni, waking up Bruno, who was, after all, up for another round of hilarity. This time, just to make sure the play was mad enough, Alberto joined in, and they had the time of their lives. For a time. Somewhere in the party, Bruno had toddled off. Silent, amidst that entire boisterous riot, Marta stood at the lounge door. She looked astonished, and asked her parents to come to their grandson’s room. Rocio sat quietly, but I noticed that she was smiling. “Oh, Nuala, you must go and see what has happened.”

  When I witnessed the cause of the excitement, I nearly blurted something out, but Alberto stopped me; reminding me, “Nuala, don’t say anything. You’ll spoil the book for them.”

  Bruno lay down on the floor asleep. Jorge had removed his favourite duvet from his bed, tucked him in, and left him to sleep. He dozed, blissful as a baby. I was back in another country, twenty years before with Dale and his puppy.

  It was a phenomenal evening. We set off for a walk to meet up with Joaquín and his son Quinto. I was really looking forward to meeting him at last. Joaquín had told me so much about him. I wasn’t dressed for a casual walk, but no matter, I was ready to stroll. Again Alberto used the evening to do more guide dog training until Jorge stole Bruno, for his second starring role of the day as his autism therapy dog. Once more, there was that natural bond and that magic happening between the pair. He was focused and lead by Bruno, at all times, just as all the other PAAT children had been. My Makaton wasn’t quite enough at this point! I asked Rocio to translate on my behalf for Marta, to let her know how much Jorge would thrive with a dog. Already, he had a natural connection with Bruno, just as Dale had had when he first met his Henry.

  Madrid’s river walkway is scenic, a real feast for the senses. I would like to tell you I could have walked there all night, but I’d be lying. My dog-walking flatties might not have done much for my outfit, but I’d have given a lot of Euros for them that night. Stilettos and walking do not equal tranquillity. I did my best to disguise my tortured soles, but in every other respect we had a blissful, if needfully leisurely, walk. I was glad that I managed to stumble on, because on the banks of the Manzanares I received the compliment of a lifetime. Quinto seemed to like my bright red dress, because he regularly gestured that he wanted a hug from me, saying, “Amor.” I signed, “Nuala amor Quinto.”

  I couldn’t resist kissing his hand. It was so easy to take this endearing lad to my heart, with his loving personality and, of course, those eyes again. His vocabulary was limited and my Spanish almost non-existent, but he didn’t need words. Friendship and affection just shone from him. This never ceases to amaze me, so many autistic children and adults I have met have been extraordinary people. If only we neuro-typicals had those same innate qualities. Wouldn’t it be great to be truly non-judgemental and accept those we meet at face value? People on the spectrum, to differing degrees, want to fit into our scary world, to be accepted. They have no agenda at all to cause deliberate hurt, to deceive or to cause upset. Instead, they offer unconditional friendship, and for that alone they deserve our unstinting respect. How could anyone harm Quinto, or the legions of others who share his vulnerability? Yet we can never drop our guard, and it is an ongoing source of added distress to families that that horror does exist.

  Back at home, we live with the spectre of episodes of horror, like the BBC’s traumatic screening of a Panorama investigation Undercover Care. This programme investigated the systematic abuse of adults with a range of learning disabilities and autism in a Bristol care home. We watch Peter Mullan’s portrait of how the differently fragile were treated in the Magdalene Laundries. The extent of the Jimmy Savile scandal will likely never be known. The Panorama team stated that they believe their investigation only grazes the iceberg. If that makes you shudder, then it should. How much more frightening must that be then for those who know that their precious and deeply fragile children
must at some point be in the care of such places and people, even when they are no longer around to watch over them, especially when they are no longer there. Is there any greater fear? Every one of us has a role to play in keeping our world family safe.{2} Martin Luther King Jr says it all: “Our lives begin to end the day we become silent about things that matter.”

  The most beautiful of all the goodbyes I received at the end of that glorious walk was a last hug and amor from Quinto. It was worth every blister on those red-roasted feet. I felt a little sad, wondering if I would ever see them again, but still, I was so happy to have known them. I went back to my luxurious hotel to steep my most unglamorous feet.

  Rested, and more appropriately shod, the following morning Beni showed me the sights of Madrid before we set off together for another presentation in the kindergarten building. Teachers from Jorge’s and Lucia’s school and other professionals in the field were already impressed by our work. One head teacher informed me that every Friday trained dogs visited the school for “canine therapy”. The children engaged with and responded to those dogs, and there were lots of little breakthroughs being noted as a result of playing games with the dogs. Incredibly, that deceptively simple strategy addressed the triad of impairments all at once!

  As the evening ended, we set off for the long drive back to Zamora. My feet, though more cosseted by now, remained a background issue! I kicked off my shoes, relaxed across the back seat, and was relieved that all had gone well. As ever, Alberto didn’t manage to relax! His phone was a hotline with texts for PAAT. At midnight, Angela called. This was the bad news call we’d all been awaiting. Or was it? As Alberto listened, he gasped with relief, giving me thumbs up. I had never seen him so happy before. Something good had certainly happened. He turned. “Nuala, things are going to be all right. It has taken your visit, as a mother, to get through and to say what we all have been trying to tell them.”