All Because of Henry

by Nuala Gardner

  After our presentation, Angela had managed to steal some time, and she had read half of my book in a single night. Now, she understood what they needed to do, and how they could use Tiffany to help Lucia progress. They bought a projector to make pictures of characters from her favourite video. Those images were going to be used in a print to create a scarf for Tiffany to wear when she went out. This visual resource would help her learn that going outdoors had a beginning and an end, and encourage her to bond more with her special dog.

  They had already used the morning to sort out the chaos of that social picture box. Again, the images would be projected onto the wall to give Lucia clear messages about what was going on in her home environment. At last that little girl would have a meaningful structure in her routine. She would be able to learn, and would have the means to communicate her needs. Both of her parents were now managing her as we had demonstrated they should. They were adhering to the adjustments in order to engage with their precious daughter. Lucia was no longer remote controlling her parents, and home life had changed for the better for all of them. Angela was positively laid-back, confident with hope for their daughter’s future and, indeed, for theirs, together as a family. At last they were aware of how to use Tiffany as their educational facilitator to help Lucia communicate at her level and on her terms. As I told Alberto, if my week’s visit had achieved nothing else but to help this dear family, then that alone was worth every moment and mile.

  “Nuala, your visit has done so much, and now Henry is in Spanish, things will begin to change for parents.”

  As Beni drove into the small hours of the night, we felt great. It was intense, certainly, but yes, it was brilliant! We arrived at two in the morning. Despite the hour, we had a treat in store. Jane had laid a tempting table with a feast and red wine. We were to chill. Poor Beni nearly fell asleep at the table, being so exhausted by the drive, but somehow he managed to rally. Overloaded with our passion for our work, we never tired of talking about it. Jane had so many mixed emotions; she was happy for Lucia’s parents, of course, but that was tinged with sadness with the news about Rey. She personally had invested a lot in his training, and he was such a brilliant guide dog. We sat for an hour before we all headed off to bed. I had to catch an early flight in the morning.

  The next day, I gave Beni a hug and a last heartfelt adios, then I exchanged the same with Jane. I was leaving behind a much-loved friend, whom I knew would always be part of my life. I could only hope that I would see her again someday. At Valladolid Airport I had a final, inspirational chat with Alberto, before we made our own farewells.

  Impishly, I couldn’t resist quoting the famous words of President Barack Obama. “Alberto, adios. Yes we can!”

  During the flight I tried to sleep, but my mind was active, re-reeling the thrills of the last few days. I managed to rest my eyes at least, and even those still-throbbing feet. I was exhausted. I couldn’t stop thinking about how fortunate I was to work with Alberto Alvarez-Campos and Jane Kefford. They are the most amazing people and professionals and they care so deeply for both their clients and their dogs. They really believe in them. In turn, I will forever be grateful to them for believing in me and in my own work.

  I say this because, whilst our programme gives the child the condition-specific transitional care and education required to provide a platform for meaningful communication and bonding with their dog, PAAT’s work allows the children a similar experience and education with their dogs as Dale had had with Henry. Their dogs will facilitate and “lead” the children through all the transitions in life . . . right up to its demise. Hopefully, at long last, society will learn from these children and their special dogs, and encompass them. Let’s hope it keeps on encompassing them right through to their time as adults with autism.

  Never mind those feet! Arriving back at my flat, I felt better than I’d done in years. My confidence had soared, and I realised that I hadn’t suffered a single panic attack in months. At last, my emotional healing had begun, and while it still had a long way to go, it was certainly gliding in the right direction. No one comes out of a three-year downward spiral towards a beckoning oblivion without sustaining some serious scarring. I’d never again be quite the same confident, strong woman I had once been. Perhaps, however, I was on the threshold of being a different one. I had my beloved children, good friends, and the solid support of Dr Grose. I was determined my scars wouldn’t scab over and spoil my future. My future lay here in Scotland, and there was a great deal of work to be done.

  In August, in order to help increase Dale’s chances of employment and then to provide adequate support if he were to secure a job, the Shaw Trust referred him to SAMH (Scottish Association Mental Health).{3} SAMH put him forward to be assessed for a temporary Christmas job at a local, but major, online supply base. Dale passed their procedures comfortably, but he failed to obtain one of the 1,000 jobs on offer. While he was disheartened, SAMH were also disappointed and confused about why he hadn’t been offered a position. They were confused? I wasn’t exactly clear about that one either!

  A month later, three and a half years after leaving college, with exceptional support from SAMH, Dale finally secured his first job. It was a six-month temporary contract, and he declared his autism. Legally, a client doesn’t need to make that disclosure, but the flipside of that is if they are not informed the employer cannot reasonably be expected to support adequately in line with the DDA or Equality Act. Some applicants decide not to declare at application stage, for the understandable fear of being discriminated against.{4} They then inform their employer when they are safely appointed. At that stage, of course, the employer’s legal requirement to make the necessary adjustments in the workplace becomes enforceable.

  Dale went through the recruitment process, and he impressed the interview panel, which conscientiously adhered to his requirements. He needed no other support at his interview. His experience of volunteering for Barnardo’s and doing clerical work gave him the skills he needed to start his new job as an administration assistant. It was based in an arts centre, twenty-five miles from home. Ironically, he had to take the same bus that the Largs nursery position would have required him to use. He settled in well and SAMH received positive feedback from the centre’s staff. Naturally, his computing skills were superb, and as ever, he was always punctual and he fitted in well with the team. He used his initiative, and was unfailingly courteous and helpful with both staff and the public. My only real regret in all of this was that it had taken all those years of facing unfairness for Dale to get behind that desk and be given that chance.

  In the bitter cold of February 2013, a beam of Spanish sunshine was to warm my heart. Alberto called with incredible news. The CEO of Guide Dogs Queensland in Brisbane, Australia, had asked Alberto and Jane to move their family to Australia for employment. More, they could establish our programme with the charity there. I was thrilled that our work was reaching still more families. We both saw the potential for that success to be replicated on the other side of the globe for many, many more. His next words left me speechless. “Nuala, we will try and get you over to Brisbane, because your experience is vital.”

  I thanked him for his faith in me. Still, Spain had felt far enough away. It was hard to imagine my great friends being in another hemisphere.

  There was something else I needed to know. “Did Rey win his fight for life?”

  Alberto reassured me. He had pulled through, but alas, would be chronically sick for the rest of life. He had sustained significant damage to his kidneys and liver, and such was the level of his debility that he could no longer work as a guide dog. The client had been devastated that he had lost such a superb dog and companion, and with him all that independence and well-being that Rey had gifted. They had only had one year together. The client was in the process of obtaining a new guide dog, and Rey himself was now in retirement and was being cared for by another family. At least there was more positive news.

  I asked ab
out Lucia and his reply made my day! Her parents had taken on board everything we could have hoped. They had sought professional help after researching the possibility that her autism had worsened because of gluten in her diet. Certain studies link gluten to adverse metabolic reactions in autistic children, finding that it gives them acute digestive and bowel problems. Her parents implemented a gluten-free diet and rapidly they noted signs that her autism had improved, although she still didn’t speak. Non-verbal autistic children can obtain speech at any age. Lucia was still very young, so there was every hope that her spoken language could come yet. Her parents’ structures and strategies ensured that she was connecting better with Tiffany. In every way, family life was moving in all the right directions.

  Inverclyde, Ireland, Germany, Spain, and now Australia! The world was getting smaller, and I could get to like that! There’s nothing like the thought of sunny Zamora when the hail is battering at your already draughty windows and a gale-force wind is howling in from the Clyde! I didn’t have any Spanish red in the cupboard, and maybe that was just as well! The trusty teapot was around though, and the kettle not far off the boil.

  I was growing into this flat. It could use some of those gorgeous ceramic plates I’d seen in Madrid to bring a measure of Mediterranean warmth into this cold Scots kitchen. Madrid. It was like a dream. How did I get there? Me, Nuala, wee lass from Renfrewshire! What was that all about? That library, all the ornate carvings and cornices, and the light flooding in through those massive windows. All these paintings that I never would have known existed, far less stand beside. Certainly, there were dark corners, heavy doors with who knows what behind them, stairs going up as well as down, but now that I thought about it, that was a bit like my life, really. What was that noise? The kettle must have boiled ages ago! Again, someone’s been knocking at the door. Who would be out in this filthy night? Again that knock. Should I answer it?

  It could be Amy’s pal’s mum, with news of the riding group. It might be one of my friends, with a warming bottle of red to share. What if it’s Dale, with that very lovely lass, and some cake to go with the tea?

  Or that secret, special man for me.

  Or it could be a wee opporchancity, as the great Chic Murray might have said.

  Possibly, there’s the risk that it’s something else. Possibly, but unlikely. Risk. There’s always risk when you open a door.

  Will I open that door? Too damn right I will! The future, whatever it is, is behind it, and I’m striding out to envelop it. Anyway, I’ve a guardian protector by my side, and he’s never let me down. Before I answer the knock, I give thanks for an angel with a glossy golden coat, four legs and a wagging tail.

  Postscript

  There is no real way of adding up Henry’s legacy. It is incalculable, but my hope is that, in some way, if A Friend Like Henry shared what that beautiful dog had done for Dale and our family, then this book’s obligation would be to show that his gift was ever bigger and more enduring than any of us could possibly have imagined.

  There are so many thanks to be given at the end of any journey, and this journey has been more filled with people and presences than most. It would be impossible to acknowledge them all, but there are some we need to catch up with before we leave them.

  Spain and all the wonderful people from PAAT remain a huge highlight on my personal map. In March 2013 I presented my work at the first International Congress of Health Professionals in Animal Assisted Interventions in Lleida.{1} It was both a thrill and an honour to share a platform with contributors of the calibre of Dr Aubrey H. Fine, an eminent psychologist specialising in research into the unique bond animals share with humans. He spoke magnificently on his work with people with autism, sensory loss, bipolar disorder and more. Some of Dale’s story will be referenced in his latest book.

  Then there was the experience of hearing the great Mylos Rodrigo Claverol present on her innovative work with her own trained dogs in an animal therapy situation. In her role as a family and community medicine specialist, her pioneering approaches are already changing lives for people with dementia. I had seen a fraction of this rainbow of hope many years ago when I visited my own father in a care home. Henry made more than a little difference to those elderly residents. In Mylos, I saw that rainbow reach into infinity. The strategies she is using with dogs to reach and teach those burdened by Alzheimer’s and similar afflictions also have significant parallel applications in autism. Paco Martín Zarzuelo opened our ears and hearts with the possibilities seen in his own groundbreaking research, using electronic devices and animatronics, the technique of operating lifelike robots. Using dogs, with attached iPads, modems, PECS and the like, he is witnessing improved focus, motivation and communication in his user group. Here was an update of what Jim Taylor had described to me all those years ago when we “spoke” through Henry. Yes, he urged, do it. Use the animal as an appropriate, non-threatening buffer zone!

  There were so many more. Francisco Javier Lozano Olea and Eva Doménec Elizalde of the Animal Assisted Interventions (IAA) Unit. Sant Joan de Deu Hospital in Esplugues were working with their dedicated team to help alleviate fears for children in oncology wards and similar units. Their dogs are trained to wear theatre hats, gowns and even mock IV drips. They receive placebo drugs to help the children accept and relax in their treatment. This strategy is already so successful that they are seeing a significant reduction in the level of sedation required by the children in the traumatic post-operative recovery time.

  From the UK, Clair Guest, of Medical Detection Dogs /Cancer and Bio Detection Dogs, lifted the lid on the work of the dogs she is training to quite literally sniff out cancers. With 300,000 sensory receptors on the canine nose and a sense of smell 100,000 times greater than the human one, and with that specialised double sniff at a patient’s breath, those highly trained dogs can detect cancers, including those in the breast and bowel, at a remarkably early stage. The dog’s ability to discover cancers so soon in deep tissue is 95 to 97 per cent accurate. Clair herself owes her life to her dog who continually licked her neck, alerting her to changes occurring in her own deep tissue where cancer cells were growing.

  A hard act to follow! Follow I did, though. Once again, I was proud to share a podium with the amazing Alberto, on his last major “gig” for PAAT before uprooting to Brisbane. At my side, and making my Scots tongue accessible for Spain and beyond, I had the lovely Rocio. I am forever in her debt and in Alberto’s and in Jane’s too. Australia is fortunate to have them. Maybe one day I’ll see them there. I hope so. Gracias to all of you.

  What of my one-time companion in Spain, Blair? DATA is expanding by the minute. Keir, who piloted his programme, is thriving with Blair’s innovative and empathetic approaches, and so many more have joined him. Late summer 2012 saw Blair stage a stunningly successful DATA dog agility competition and show, complete with qualified judges and rosettes awarded. It will not be the last such event for DATA. In the mainstream dog agility circuit, human noses are sniffing this new air. Blair’s brilliance and daring is earning him the reputation he so deserves.

  What of autism in the big world? How much has really changed for the majority? No question about it, things are moving, but there’s still too far to go. If we fail to ensure all with ASD receive their right to a good, appropriate education, which is clearly their best chance of independence and their pathway to a proper quality of adult life, ultimately society will pay the price. Financially alone, research shows (2008 by the London School of Economics and Political Science) that autism costs the UK £27.5 billion a year. Inadequate help in the early years results in substantially greater ongoing adult support. The National Audit Office has assessed this hidden cost at around £2.3 billion a year, in Scotland alone. Best value it is not! The government has identified the importance of early diagnosis and condition-specific education. Let it act upon that and quickly!

  The NAS reports that two-thirds of adults with autism in England receive insufficient support. One in thre
e adults will experience severe mental health difficulties as a result. Mental health problems are not an inevitable consequence of having autism. With the right help these issues are preventable. Consider the ongoing cost to the NHS for this alone, or the long-term financial implications of supporting adults in residential care, who, with the right education and support as children, might have enjoyed significantly greater independence. Some, like Dale and his friends, might be contributors to society rather than being dependent upon it.

  Every year in the UK there are 600 to 700 newly diagnosed children with autism. For these new families, this story gives something they hardly dared to have before: hope! I commend the relentless work of the NAS and Scottish Autism in trying to plug the gap in services, but the demand far outstrips the supply.

  Nearer home, as I write, I realise it is now a full nine years since Henry died. Life is as normal as our life could ever be. We are all content and prospering. Amy is settling into her first year of secondary school thanks to the Rolls-Royce of transitional care given to her by her school’s autism outreach service. Such is her desire to be like her peers that she wears a full school uniform, including a shirt and tie and, for the first time in seven years, a school skirt! Her school is newly built and huge. Many of the teachers there had already taught Dale and they remember him well.

  Amy is taking a similar pathway to the one that her brother had earlier walked for her. Just as Dale had been fortunate in having the perfect friend and role model to guide him towards adulthood, so she has her own heroine friend in the form of Regan Boyle. Regan has known my daughter since she was four, when they were both at Moorfoot Nursery. While the friends from the Famous Five come and go, Regan has remained committed to Amy throughout all the intervening years. To this day, if I were asked to design the perfect friend for Amy, she would be Regan. I am as proud of that smashing young woman as I am of my own children.