All Because of Henry

by Nuala Gardner

  After Amy’s upset, I consoled her. It was good that she had played with Sir, her special horse. If she wanted, I told her, she could make Wee Henry her special horse instead. Hearing this, she seemed to settle, reverting to her usual happy self. Bereavement for any child, let alone a child with autism, is such a major transition that I had prepared her, years before, to give her an idea of Heaven and loss.

  I had found a children’s storybook, Heaven by Nicholas Allan, and I introduced it to her as soon as she took a fleeting interest in books, when she was about three. I already admired his other stories, which also appealed to Amy. She never tired of hearing his tale The Queen’s Knickers (She was particularly fond of when the Queen wore her extra-padded riding knickers!). Heaven, being about a dog’s death, helped her understand loss, and it would enable her to cope with the memories of Sir yet to come. As I had done with Dale, I adapted – indeed, I completely vandalised – books to suit our purposes. I had removed pages of Heaven, still allowing the story to shine out. I had taped over the text to hide it, for future release when Amy was ready to learn to read. By doing so, the book’s sensory overload had been reduced. Naturally, I hid the part which considers the possibility of The Other Place. After all, that was never going to happen to our dogs! This book was a real godsend, as it helped Amy prepare for this eventual outcome we were now facing.

  In the days that followed, Dale was to receive condolence cards from friends and family – this had been no ordinary dog. As a special thank you, we gave a framed portrait of Sir to his vet, Nigel Martin, drawn by Dale in those last weeks. The portrait was for their staff room, as a wee reminder of an extra-special client and for all they had done, both for Sir and for Dale.

  At home, our Wee Henry was still an upset and lost dog. A couple of weeks on, as I watched Amy playing in the garden, I was distracted by a whimpering and barking from upstairs. I investigated immediately. Henry’s distress was coming from Amy’s bedroom. As I entered her room I was pleasantly shocked! There stood Henry, completely captured by Amy, wearing a pink horse head collar from her life-sized toy Shetland pony, and with a lead rope tied to the handle of his stable. If that weren’t bad enough, she had put a pink saddlecloth on his back, and he wore brushing boots! God knows how long Henry had tolerated this before eventually letting me know he had had enough. I laughed quietly and rescued him, but I was relieved too that although Amy had been able to grieve for her “horse Harry”, she was now moving on.

  There were days thereafter when I would think of Sir constantly, and others when he entered my thoughts less, a normal part of the grieving process, including that for a dearly loved pet. For years to come, though, my grief would surface at the most unexpected moments. When laundry day arrived, I’d lift Dale’s pillow and I would just sit on the bed, tears flowing. Sir’s collar was tucked inside Dale’s pillow, where he had put it on the night he died. Writing this seven years later, I know it’s still there.

  Day by day, life had to go on. After Easter, Dale hoped to begin a career in early education and childcare, in a mainstream nursery setting. At Gourock High, he had had a week’s work experience in Carousel, a local private nursery. He received an exceptional report from the nursery staff, so much so that I remember the secondary’s assistant head commenting that it was exceptional for a pupil to get such a good nursery placement report. During that week, Dale discovered he had a real understanding of how to connect and engage with children. He told me, “Mum, I remember what made me happy in my childhood. I understand how the children feel when there is an adult playing with them that really knows what makes them tick.”

  In common with so many others, Dale’s autism had given him a photographic memory and his childhood recollections were vivid. Often when I have wondered at his ability to cope, he has explained that he can remember the bad and the good times in detail. He has even told me, “Mum, I’m really shocked that I behaved the way I did when I was a child, but I saw things so differently, and many things happening around me were so scary when I was young.”

  In order for Dale to follow this career path, I had to ensure he understood what it involved for him because of his autism. Probably, he would be one of the first people to have had autism which had been classed as severe in childhood, who wanted to have a career in this area. We had major concerns. So, when Dale was seventeen, his father and I sat down to talk with him about his choice. The conversation we had and the issues we had to raise were both devastating and depressing. His dad and I felt we had no option but to make him face the reality of his situation, the potential barriers, and the problems he would encounter if and when he qualified. We needed to help him realise how hard it would be to find a suitable job with a supportive, working environment, one that would be right for his autism.

  In order to gain the necessary understanding from staff, he would need to let employers know about his condition. Already Dale had concluded that because he had autism he would have to prove himself more and be more able than his non-disabled peers.

  Motivated to overcome this perceived prejudice, Dale took on voluntary work as a support worker with Barnardo’s Scotland. He worked with a group, aged five to eighteen. The children had a diverse range of disabilities, including autism. He volunteered at an out-of-school holiday play scheme and helped support disabled children in a weekly drama group. Barnardo’s require in-service training of all their volunteers in areas like child protection, so Dale had to learn about challenging behaviour, know and understand many other disabilities and their effect on child development. He became familiar with issues like health and safety, first aid, seizure procedures, safe administration of emergency medication, life support and more. These new topics and skills were relevant to his chosen career, and we discussed them all. We assured him that Barnardo’s was such a long-established charity that his volunteering would be a really strong, positive aspect of his curriculum vitae. Or so we thought!

  A very focused Dale told me, “Mum, I know it’s going to be really hard work, but I am determined to prove to myself and others that I have got what it takes. I’m not going to let having autism ruin my life!”

  Hearing this, I helped him appreciate that there were more positives than negatives in his career choice. Obviously, his talents in art and music would be an advantage, but even more: his was a unique and incredible insight into autism. Indeed, this is where many of the children emerging on the autistic spectrum would be first recognised, and this was where their early intervention would be implemented. Dale’s personal journey would prove an asset in any nursery.

  We talked about how he would avoid discrimination. We didn’t like discussing this subject, but he had to know. Together we considered what barriers he might face, whilst trying to keep things upbeat. We reassured him that as he would be working in an area where autism was now so common and was on the syllabus, he would certainly have understanding, supportive colleagues. Sadly, with improved diagnosis, it would reasonable to assume that there would be at least one child (probably more) with ASD in every nursery. Undoubtedly, working there, Dale would give hope to parents, whilst simultaneously giving staff a unique insight into autism. He had made a great career choice.

  At the time, I had spoken to a few girls who were qualified practitioners, working locally. They said that the profession was trying to encourage more males into nursery education careers as positive role models for vulnerable children, and a good influence on many children from single-parent families. So far, so good.

  We explained, in detail, that there was legislation in place to protect him, the Disability Discrimination Act 1995 (DDA), as it was then.{1} Under this Act, he should not be treated less favourably because of his autism. Dale had the right, like any other person, to apply to his local college and take part in any course he desired, assuming he was a suitable candidate.

  And Dale was a suitable candidate . . . because of his voluntary work, his good work experience report and the right Standard Grades! Importantly, under the
Act, college staff had to take reasonable steps to ensure that Dale accessed the curriculum fully, in a similar way to the adjustments which had already been made for his school exams. He would have additional time at exams; instead of note taking he would receive classroom notes from lecturers, addressing his processing difficulties and poor fine-motor skills. Under the DDA, it was unlawful for a person to “harass or victimise a person because of their disability”. We talked at great length and felt optimism for his future. Really, there was no reason he shouldn’t pursue this course. How much more suitable could he possibly be?

  Understanding the difficult and extraordinary journey Dale had made already and knowing how much good he would bring from his childhood experiences, after much deliberation his dad and I decided that no matter what we would support him in his pursuit of this profession. He was returning to a system which had helped him be the person he was today, and that was huge.

  About a month after Sir’s death, I was deeply touched to discover that Nigel the Vet had hung Sir’s portrait on a main reception area wall. He told me that his staff really respected all that Dale had achieved with Sir, and it was only fitting that the portrait be enjoyed by all the clients. If only all the people to have involvement in Dale’s future would be as understanding and supportive of his achievements.

  Meantime, there was something else I needed to do for both my children. I compiled memory photo albums of Henry. When Amy saw Dale’s album, immediately she drew a picture for Dale to insert. The drawing was clearly Sir – happy-faced, wearing his bright blue collar – with the words “To Dale, Sir Henry went to Heaven on 17/4/06 and was a good dog. From Amy” written underneath.

  This gesture truly moved us, reassuring us that Amy showed the beginnings of empathy, a concept that takes years for many with autism to grasp. Indeed, some will never be able to do so. With Sir’s passing, I was to learn so much from Amy as well as from her brother about the complexities of their condition. However, for now, we were still coming to terms with the past that was Sir Henry and the future challenges that lay before Dale as he moved from his familiar world into the big wide world beyond.

  2

  Awareness

  “I believe that language for many people with autism is like trying to understand the handbook of a computer software package that is in computer code when you are not computer literate. Why do we say things that we don’t mean? I can remember my father telling me to make friends. I knew how to make rice pudding, but I did not know how to make friends.”

  – Lawson, an adult with ASD{1}

  “My son does not tell me when he is being bullied. I have to figure it out sometimes from bruises.”

  – Parent of a child with ASD{2}

  Deep below the duvet, something – or someone – was fuming.

  “Nuala, Nuala! I could kick a horse!”

  There was no pony-hating monster in the room. Far from it! This was our six-year-old, horse-mad Amy, expressing her fury as only she could. Let’s listen to her again, because sometimes what a child with autism says is not what we are first able to hear.

  “Nuala.”

  As ever, Amy followed this mode of address with the literal precision that hallmarks autism, despite all my carefully structured words – “Tell your dad something”, “Ask your gran”, and the like. As I write this, and look at my now secondary-school-aged daughter, it still remains an all too rare treat when she chooses to call me Mum. In her Primary 1 days, it simply wasn’t a name she used.

  “Nuala! I hate horses!

  Certainly, she was angry. I was to learn that Amy’s emotional responses were three-tiered. The first layer would manifest itself when she was slightly annoyed. She would scream, “Shannon hates horses!” (Shannon, Amy’s best friend, was a great horse lover.) When moderately upset, she upgraded to, “I’m going to kick a horse!” But worst – at maximum, high-volume anger – she would stomp and jump around, yelling over and over, “I’m going to kill a horse!” What more powerful images were there for Amy than her beloved horses?

  She would repeat these statements until diverted and consoled, as we directed her to a better emotional response. These outbursts became such a part of our normal life that my close friends started to include them in our banter! Many’s the glass of spilled wine that one of us has shrieked over, “I could kick a horse!” Throughout the years of managing my children’s autism, my sense of humour has helped me cope, stay sane and keep positive. Autism provides a plethora of amusing scenarios, and has given me and my friends so much life-lightening laughter. That laughter is always with my children’s autism, never at it.

  Anyone overhearing Amy’s terrible remarks might laugh, but in so doing would add to her distress. It was a scenario we knew all too well. Some people would be visibly shocked and respond by ignoring her. How I helped Amy recover doubtless horrified many. Bystanders might have thought I was simply condoning bad behaviour in a girl of six, who was, after all, old enough to know better. It was so easy to see a spoilt brat, just as had so often been seen when I had been out with a younger Dale.

  Perhaps this helps explain that Amy’s high-functioning autism, with its attendant verbal skills, was no easier for any of us to deal with, least of all for Amy herself. Verbal and able or not, my girl needed an education which was both mainstream and condition-specific. In her mainstream school, she had the advantage of being surrounded by positive role models, free from communication or social difficulties. Her friends (the Famous Five), without understanding exactly why, accepted that Amy was different. From the word go, as she started school, she was beginning to learn how to adopt her peers’ social skills. Equally, the Five were fast becoming adept at using Amy’s obsessions to engage with, motivate and include her. Just as it had proved in nursery, this was already proving to be a key to her success.

  Fortunately we had recognised in time that it was crucial that she had support similar to that which she had previously received in nursery. Supported by this structure, she was given the social tools she needed. That support is vital, not just for Amy, but for any child with ASD or AS who is attending a mainstream school. Sadly, for many children, the provision of this remains far from ideal.

  Yes, Amy was already nearly six in the autumn of 2005 when she started school. Importantly, she had had a deferred school year, making her the class eldest. This initiative lessened both her social pressure and the developmental gap with her peers. It was a tactic which had already worked brilliantly for Dale. Further, we had the support of all of the Five’s parents. Parents try everything to ensure their children reach their full potential, to protect them from harm, but these issues are compounded when your child has ASD. Autism is an unseen handicap, devoid of physical or outward features. Like so many, Jamie and I debated about when we should introduce others to our children’s condition.

  There is no single, easy answer. In situations like Scouts, we had always disclosed and explained Dale’s autism, for many reasons. It helps those in charge understand and support the child better, and gives them protection under the existing legislation. Now it was Amy’s turn as she started Brownies. Unquestionably, it was the right path to take as it enabled those in charge to make the adjustments needed to help both Dale and Amy enjoy full inclusion, and simultaneously ensure safety for all. Everyone had a good time. Of course, Amy’s idea of a good time wasn’t always the same as other people’s!

  In the early spring sunshine of 2006, Amy was in her favourite place, the stables, and she couldn’t believe her luck! She spotted the farrier, whom she hadn’t met before. He was hard at work, shoeing a big mare. The young yard girls, sitting relaxing over lunch, started nudging each other. They had prime viewing as Amy cornered her new victim.

  “Hello! What’s your name?”

  “Scott. What’s yours?”

  “Amy! What are you doing?”

  Everyone at the yard already knew that Amy had an in-depth know­ledge of horses and farriers. Everyone, that is, except Scott. She we
nt full throttle – the whys, whens and hows of her hundred questions unfolding. He took it all in his stride, answering everything, and he still managed to shoe three big horses throughout the onslaught! I went to retrieve her, to explain her autism and thank Scott for his incredible patience.

  “So what! Her knowledge of horses is amazing!”

  I jokingly offered to bring her down the following week for a repeat performance.

  “Any time! She’s something else!”

  During the Easter holidays, Amy couldn’t believe her eyes when she saw Scott again. This time I decided to distract her, but it was too late. He got in first.

  “Hello, Amy! Nice to see you again. Fire away!”

  Back at school for the summer term, Amy continued to improve, benefitting hugely from a little social group which had been in place since the start of the session, the Gingerbread Group. The Group included several neuro-typical kids from the school. Amy’s teachers gave her peers an explanation of her autism and why she behaved the way she did – with the positive effects of that chat greatly outweighing the negative. Inevitably, a few children tried to exploit her, but they were doomed to fail. Amy had taught strategies and a bevy of well-educated peers as protection!

  The Gingerbread Group focused on the big issues, like bullying, but it also taught Amy basic social skills: how to sit in a chair properly, to look and listen, engage appropriately within a group. It let her practise problems and solutions in a safe, controlled environment. At the school gate, she proudly showed me her sticker. “I asked a good question today!”

  To ensure she understood how pleased I was and to encourage her success, I reacted with my OTT, Oscar-winning response. “Amy! Well done!” I leapt up and down, gesticulating madly. “Congratulations! That’s brilliant!”

  A nearby parent added to the congratulations, asking what exactly the occasion was. With Amy in earshot, I had to show off her sticker, and . . . well, I know, it sounded so lame.