All Because of Henry

by Nuala Gardner

  Meanwhile, we stayed at the impressive, purpose-built Guide Dog Centre in Cork, Ireland. Neil and his staff made us so welcome. Some had read my book and were delighted to talk to Dale. What an abundance of stunning dogs – Labradors, Lab-retrievers, Golden Retrievers, Goldendoodles. Oh, we could have run off with any of them! Enough! We weren’t here for dog rustling!

  Knowing that she was in a kind of school for dogs, Amy had questions. She was keen to learn how sight loss affected people: what was the Braille signage on the bedroom doors? She understood some of the dogs would work to help children with autism, just as Henry had helped Dale. What she didn’t know at the time was that she had autism. That was something she worked out for herself later on. It’s difficult for a parent to decide where and when to inform their child they have autism. For the majority of children, the day arrives when, having gained insight into themselves, they begin to feel they are different from their neuro-typical peers. For Amy, she had the bonus of understanding that Dale had autism, because of my book, and her realisation was to come about a year later, at age nine. When she asked me, “Nuala, do I have autism?” I sat with her and asked her what she thought. She confided that she thought she might have it, because of some of the things she said. I confirmed it, and told her that, like Dale, she had support at home and at school through it all, no matter what. But all that was yet to come.

  At the Guide Dog Centre a year earlier, the hospitality from the friendly kitchen staff was superb. We were fed with copious, hearty Irish breakfasts and bucket-loads of tea. I sat with Neil and explained the reasoning behind the resources, and how they might be useful to the Irish model. He understood my thinking exactly, and he then invited us to see a trainer work with a potential autism assistance dog.

  We drove to a quiet housing estate. The harness was put on the dog. The trainer had control, with a long lead attached to the collar. Training? We suddenly realised we could make this session real! With Amy! Being small-framed for an eight-year-old, she was perfect. With the Canadian dog model, the child has to be ten years or under so the dog can counteract the child’s strength.

  The dog was big, strong and stunning, with a beautiful temperament, and near the end of its training. With Amy prepared, we set off. As they walked at an even pace, I suggested, “Amy, jump up and down and scream loudly!”

  Marvellous! Her scream pierced all of our ears, yet the dog remained unfazed. He waited until she was calm and for the trainer’s command to walk again. It was humbling to witness. En route, Dale answered Neil’s questions. We reached a busy road. Immediately, the dog stopped, stood glued to the kerb. I couldn’t resist. “Amy, run away and pull as strongly as you can.”

  Oh boy! She pulled that dog lead like she was in a tug of war, but to no avail. The dog remained anchored, and she succumbed.

  For the rest of the walk, Neil and Dale discussed an excellent Irish programme strategy. On the adult’s lead there was a sign which read: “Please Ask Child to Pat Me.” This is an unconventional tactic. Generally, a working dog should not be disturbed when it’s with a client. Neil explained parents had reported that their child remained calm and enjoyed people admiring and stroking their dog. Dale and I recalled parallel situations with Henry: “It made me feel good when people admired him, and would talk to me about him.”

  Our weekend was memorable. I learned so much, and we even managed to have some social time with Neil and his family. On our way back, we needed to pick up the boys. They had had a whale of a time, but something else happened. On sighting Dale, Henry greeted him as if he hadn’t seen him for three years, instead of just three days! Happily, he jumped into the boot. However, Thomas was a different story. He had become far too comfortable with hotel life. Indeed, he’d fallen in love with a guest Spaniel. He was so besotted that he refused to leave! I had to drag him into the car, with his tail between his legs.

  A few weeks later, Dale and I visited Dogs for the Disabled (DFD) in Banbury, who had started a pilot scheme with three families using the Canadian model. Jamie was working, so he couldn’t be with us. Maybe we both knew that wasn’t the whole truth, but it was as much as I could take on at that point. Focus, I told myself. Focus. I looked ahead. I needed to share my work with interested charities; the wider the knowledge, the better the chance of success. We spent a lovely day, which mirrored our Irish visit. While Dale had time with a trainer, working with a dog for a physically disabled client, I had a chat with the fundraising manager. Deep in conversation, I had to interrupt to “take a moment”. Dale was outside and caught my eye, and I simply had to watch. He was sitting in an electric wheelchair, with a beautiful and dedicated “carer” called Hal by his side. I stood, gobsmacked, as Hal pulled off Dale’s jacket; picked up his mobile phone, then walked beside the chair, anticipating the next time he would need help. Hal was a gorgeous golden retriever, who did his breed and peers proud. Dale was using a training clicker to reinforce when a task was done well. It was more than a moment.

  The trainer commented that Dale had a natural aptitude for using the clicker, a skill many find difficult. The CEO invited him back for a week’s work experience. He seized the chance!

  At Easter, Dale returned to DFD, staying nearby with his aunt and uncle. He blossomed under the staff, who made him feel comfortable and welcomed. The trainer he spent most time with sent us gorgeous pictures of him working, including a special one: Dale in a wheelchair, with Hal by his side. He learned how to groom the dogs properly, clean the kennel areas, look for health problems and best of all, he was involved with training the dogs.

  The staff were well aware that Dale, as a child, had been as severely affected as the children they were now seeing. That way, the week worked for everyone. When he returned home he bought some clickers to fine-tune Henry’s tricks. He had such a natural aptitude for dog training.

  After all our amazing tuppence coloureds, we were back to penny plain in no time, and it was fine! Before the end of term, Dale had to complete a written assignment, “Understanding and Managing Children’s Behaviour”. The topics were insightful, and I got that irony! He had to describe types of bullying, and the discriminatory behaviour people with disabilities (particularly those with ASD!) face. I couldn’t help but wonder when the tutors marked his work, did they notice anything? I’ll never know. However, the tutors could see Dale was progressing, and this was acknowledged in his June 2008 external assessment. As ever, his attendance and timekeeping were Highly Satisfactory. As was his relationship with the children and staff. What was more important was that all other areas of his practice were Satisfactory. Now, he was achieving the standard expected for an HNC student, despite the lack of support and adjustments. He passed with flying colours.

  At last all his coursework was back on track. He entered the summer break in great spirits, ready for a few weeks of happy adventure.

  8

  Different Places

  It was a dream of a summer, and the A-Team embarked on their personal rite of passage. Enjoying rock music was one thing, but that first festival beckoned – T in the Park! Dale and Ryan were nominated project managers, and once again, the plus side of autism kicked in and their adventure was super organised, military-style. Firstly, the concert website was combed to meet all their needs. They carried their Autism Alert Cards and used their transport concessions, allowing them a significantly bigger lager budget. They selected the quieter camping area, with plenty of room for those essential, pre-ordered crates of Tennent’s. Lockers were booked. Dale was pleased to discover he could get his daily shower, despite having to queue two hours for the privilege, and skim £5 off his alcohol allowance. Every penny was counted. Each boy took responsibility for buying one piece of decent equipment, because they planned this to become the prototype for an annual beano. As I watched him humph that bulging rucksack full of junk food, I mused that I’d never seen Scout camp leading to this!

  Thankfully, the sun was with them. I watched the main acts myself, but there were no field
s or tents for me! In the evening, on my own, red wine in hand, I enjoyed the television coverage from the deep comfort of my sofa. Cameras scaled the audience. Though the crowd, which looked like tin-jammed sardines, did give me a bit of worry, I was so proud. Dale and his friends were really amongst that lively, squashing throng.

  On his return, the rucksack contents pretty much walked through the door before he did! The guys had had a fantastic time, and the free floor show of merry revellers had been every bit as good as the staged events. The outrageous fancy dress gear, the mankinis, the banter – okay, lads, no more! That’s quite enough for any mum to hear!

  Meanwhile, back indoors, both Dale and Amy were hooked on reality television: The Apprentice, Big Brother, and particularly I’m a Celebrity . . . Get Me Out of Here! I was astonished. The entertainment was, after all, largely at the cost of the contributors. But both of them were remarkably astute at working out the behaviours and predicting who would be voted in or out. If only I’d been a gambling woman . . .

  They were thriving. However, that October a terrible incident occurred, reminding us all that no matter how high-functioning a person with ASD may be, they are still vulnerable. An eighteen-year-old friend of Dale’s with Asperger’s syndrome was walking home one afternoon. He glanced at a man, drunk in a van. The man acknowledged him. “What are you looking at?”

  He replied, “You.”

  The drunk leapt from the van and punched him repeatedly in the face. The lad had to be rushed to hospital with extensive bruising and swelling. Doctors feared that his cheekbone was fractured. He was in a state of shock. Thankfully, there was no lasting physical damage, but the psychological harm was devastating. He explained to the local paper, “I’ve lost my confidence. I just don’t want to go out.”{1}

  Dale and his friends were sickened and rallied round to support their friend for weeks. Steadily, they accompanied him outdoors to help him overcome his fears. What a painful reminder of their situation. Dale’s reaction was sharp. He had to stay safe . . . so he took up a martial art! Once again a friend was on hand – a karate instructor! It worked on so many levels: helping improve his balance and co-ordination, and the repetitive, precise movements increased his spatial and self-awareness. He graduated quickly, acquiring many coloured belts. At the time of writing, he is a green belt. Perhaps, more importantly, the discipline it instilled and the sense of safety he gained gave him courage. He made new friends, his self-esteem soared and his stress-levels dropped.

  In November, Dale’s nursery assessment report was equally impressive. He received two Satisfactory and six Highly Satisfactory grades for his practitioner skills. At last, we began to believe that he would achieve what many had thought unachievable. It felt wonderful! Better and better, staff at Barnardo’s nominated him for the Sunday Mail Young Scot Awards. He didn’t receive an award, but it didn’t matter. It was enough to know how highly Barnardo’s valued him. He received a certificate from the awards panel, stating that his nomination was deserved and his contribution was “outstanding”.

  With Christmas approaching, I began to relax. What a relief! Life was settled and straightforward again. For once, the festive season could be a peaceful, happy time. I should have known better! In mid-December, my cousin Veronica phoned from Dublin. My uncle Peter had died suddenly. He was the last of my mother’s siblings. I had been close to Peter all my life. He visited my mum’s for holidays, so he understood our family well. So instead of preparing for Christmas, Dale and I were in Ireland. The day of the funeral was cold, the pavements slippery with ice and the air thick with frosty breath. Dale looked very much the man of the family in his new suit. The night before, in accordance with Irish family and Catholic tradition, he attended family prayers at Peter’s side, by the open coffin. Until then, Henry’s was the only lifeless body he had seen.

  I told him how good he looked, how pleased I was that he wore Grandad George’s gold watch. That watch was very special, having belonged to my dad’s great-grandfather. Dad gave it to Dale a year before he succumbed to Alzheimer’s. My son understood how precious it was and wore it at times of importance or stress. It helped him feel better, rather like Henry’s collar, tucked under his pillow, did.

  It was bittersweet to witness my son getting to know his near-aged cousin Gemma as if for the first time. Throughout the difficult years, so much time had passed during which I had little contact with my sisters. For the first time in a decade I really felt part of my wonderful family, all pulling together, helping each other in times of crisis. Saying my goodbyes, I vowed to keep in touch more. How could I know that soon a close family member would need my help?

  Once home, I was desperate to see Amy, aware my emotions were churning. I was really happy to be working to improve the lives of those affeced by autism. But by doing so, I still had to sustain a secure income working as a community staff nurse and accept I was trapped in a loveless marriage. Since I wrote Dale’s story in 2006 the fractures in my relationship seemed to emerge all at once, but they happened throughout my married life. I had adapted to coping with a magnitude of stress. Juggling everything became a normal part of my life, but I couldn’t deny the fractures were now reaching breaking point . . . and so was I.

  Since Amy’s diagnosis I had needed low-dose anti-depressants to help me sleep at night, because I suffered with episodes of insomnia. As the stress and marital problems escalated, so did the dose of my medication, to help me cope.

  Once again, back in Scotland, festivities took a back seat. Peter’s death and seeing my family had deeply affected me. I reflected. That weekend was a wake-up call. The years of fighting and caring for the kids had taken its toll. What had happened to the best years of my life? I reached in my handbag before I turned the key in the lock. I took out the bottle, half empty, and rattled a capsule into my mouth. No water. Right there on the cold step, I threw back another. Nuala’s little helpers, I joked in my head. Anti-depressants. Well, I bloody well deserved them. I needed extra chemical support to face Jamie and return to an environment which for years had caused me anguish and despair.

  To compound matters, the welcome home was not all that I had hoped. Nothing like. The house was a bombsite. Presumably, I was expected to return and restore order. Oh, yes, and work over Christmas too. Meltdown. Like so often before, Jamie and I erupted. This time, however, it was so bad that Dale had to intervene.

  “Mum, Dad, enough of this terrible rowing! Think about Amy hearing this!”

  He was right. I hated my kids witnessing the constant arguments. Doubtless, Jamie felt it too.

  So, it took having some decent time out, yes, even for a family funeral, to really recognise the flaws in my relationship. It was nothing new; but wrapped up in the children’s needs, I hadn’t seen it. Dimly, I’d made out that something had changed with Henry’s passing, but how could I know what it was, or indeed, that I would have to call on him again?

  Just when I needed it most, Dale gave me my best ever Christmas present. It was a copy of his end of placement report, dated 17 December 2008. He had excellent attendance, was “always on time” (actually, most of the time, he was early). He formed excellent relationships with the children, had effective observational skills to take them on to their next steps. He listened actively, accepted advice willingly and was an effective team member with initiative. Very professional in his approach, he was keen to learn. In all nine categories of practice, he was deemed Highly Satisfactory. Now, all he needed was to pass his Graded Unit. I couldn’t have been more proud. Mentally and physically exhausted though I was, my incredible son was worth it all.

  In New Year 2009, with the incredible support of Sandra and his tutor Gwen, Dale passed that Graded Unit. Whilst the grade was a C, we didn’t care. He had done it! In March, he received his letter confirming that he was an HNC Early Years Education and Childcare Worker, despite not a single penny of his £3,897 SAAS award having been spent. Everyone was thrilled! Thankfully, at that point, the future was unknown. We
just couldn’t see the barriers still ahead.

  9

  Different Faces

  Yes, he had passed that course, and Dale had most certainly earned a little time off, but very soon, he applied to go on the supply list for the college nursery. I helped him with paperwork, ensuring the interview panel had access to his DDA adjustments. Billy Docherty, Dale’s Prospects employment support worker, had compiled them, so they were spot on. Prospects’ role was clarified, and advisory notes about the necessary implementation of interview modifications were included. Something struck me. Billy’s adjustments were universal, generic and suitable to be applied across stages and ages. If only everyone was aware of these basic strategies, how much better the world could be. So here they are:

  Say Dale’s name, look at him, so he knows you are talking to him.

  One person, one question at a time.

  Give him six seconds to process.

  Say what you mean, and mean what you say.

  No abstract questions; closed rather than open ones.

  While he waited for the outcome, Dale placed his name on the local authority supply list. He understood supply meant short notice in unknown nurseries. Unfortunately, in March 2009, like today, there were no suitable vacancies and countless qualified childcare workers waiting for work. Ideally, he needed part-time work or a nursery with school hours. Finding suitable employment is challenging enough for anyone in a deep economic recession. He would be competing with many experienced practitioners, and even teachers chasing childcare posts, the scarcity of work was so grim. We held onto the positive reasons why he chose childcare, and the fact that his CV was now impressive, with all those years of Barnardo’s experience.

  He had no alternative but to enter the welfare state minefield and the land of Jobcentre Plus. Unlike many of his peers, he had the good luck to be allocated a Disability Employment Adviser (DEA) to help him navigate the system. Fortunately, the DEA had known Dale as a child. He showed him where to go, and who to see about signing on for Job Seekers Allowance (JSA). Unfortunately, the DEA couldn’t be with Dale all the time and the other staff weren’t trained in autism.