All Because of Henry

by Nuala Gardner

  Bizarrely, even this seemed lost on him. All his energies were directed at defending his staff. We focused on the only option left: for Dale to try to complete his course as an Open Learning student. In fairness, the director was concerned about Open Learning, because the chances of a student passing the course were, statistically, very poor. Regardless of his nerves that day, Dale was adamant: “The thought of being in classes causes me so much worry. I know I would panic, and I won’t be able to cope. I would rather leave than go back into classes again!”

  We ended the meeting, agreeing that he would take the OL option. Luckily, the very helpful Gwen turned out to be the tutor! Dale had so much respect for Gwen that this clinched the deal.

  A few days later, he received a letter confirming an action plan, which would allow him to complete his course: “Many thanks for raising the issues with college management and I apologise for causing any stress to you.”

  Dale would have access to the College Supported Learning Department, in particular for proofreading his assignments. While this seemed a helpful mechanism, the purpose of the department was to ensure inclusion and to help him, and indeed anyone with a recognised disability, access the syllabus. This was not a luxury but a right. However, in Dale’s adjustments, he required the support of a person qualified in and familiar with his coursework. This was why SAAS awarded so generously. Thankfully, Sandra, as a senior social worker, had a good knowledge of most of Dale’s syllabus, and knew the standards expected in his assignments.

  This wasn’t wasted on me; what would Dale have done without his own learning support in place? Our fears were confirmed only a week later, in a letter from the college: “Assessments will be marked and cross-marked, following the same procedures used for full-time classes, and as with full-time students, you will be allowed two submissions of assessed work.”

  Within a couple of weeks Dale received the complete course syllabus in manual form, which, remarkably, was quite easy to decipher. Gwen was to sort out the problems with his graded unit, so that he fully understood what was required. As he needed a new placement, it was decided that the best environment for him was the college nursery, where support for students in the past had enabled them to qualify. As the nursery was on campus, it allowed him seamless support. Helpfully, it was arranged for Dale to visit beforehand, meeting the Head and the allocated trainer.

  On 7 May 2008, a less anxious Dale ventured into his new placement. We let Anna know he had managed to return and that he was feeling quite relaxed and motivated again. When he came home, he was our Dale again, the autistic tics gone, he was sleeping and eating well, and he looked so much better. The relief for us all was immense. Our hopes resurfaced.

  We all didn’t know at the time, but the maelstrom he had survived was going to keep swirling in his future.

  A few days later, an upbeat Dale explained how much happier he felt in his new placement. I was pleasantly shocked when, casually, he mentioned a factor which had made his first day a real success. In a strange quirk of fate, his trainer, Marie, knew him well. When she was newly qualified, she had worked at Hillend Nursery, which Dale attended as a child. She really appreciated how far he had come, in view of the severity of his childhood autism. I couldn’t help but wonder how Marie must have felt, meeting him again fifteen years on. What a wonderful woman! From day one, Marie was an exceptional trainer. She was generous with her praise, a great benefit to any learner, and doubly so to one with autism. She would write lovely comments on his task paperwork, knowing that the few minutes invested would be soundly returned in her student’s progress.

  Her ability to evaluate Dale’s practical tasks, both constructively and with respect for his autism, allowed him to learn and to grow in confidence. She was truly a remarkable professional and person. Her support allowed Dale to progress as any other HNC student might.

  A few weeks later, Dale received news that he had been nominated for the college’s Adult Learner of the Year Award, a surprising but very welcome initiative, and one more for his already admirable CV! Yet again, Dale had hope for his future, hope when he needed it most. We all understood the chances of success for him as an Open Learning student were precarious. However, his determination to succeed was back. He wasn’t going to be defeated – autism or no autism!

  7

  Progress

  Secure under Marie’s wing, Dale thrived, despite some unanticipated “additional support”. Within five minutes of getting down to work, the bedroom door would fly open. Enter the boys! Henry would curl up to sleep, wedged under the computer desk, warming his master’s feet. Meanwhile, Thomas claimed two-thirds of the bed, sprawled out, snoring drunkenly, tail thudding as he dreamed. However long Dale worked, neither moved an inch until he had finished.

  The boys’ attendance became part of the study routine. They never flinched, even when we spread paperwork on their torsos! Dale told me their presence gave him a feeling of well-being; their deep restful breathing had a calming influence, which helped him work longer. Even as a child, he never stopped until all his homework was completely finished. Eight years later, here we were again, with him studying for an HNC, two massive dogs by his side. With the dedicated assistance of Sandra and Prospects Student Support, he grafted hard and his willpower remained strong.

  After Frankfurt, I was bursting with inspiration, and so began to develop transitional resources for an educational programme, fully aware that the autism and the assistance dogs’ world would have to merge. Assistance and support dogs for clients with ASD were nothing new. What was new was what the working dog world had shown me. Suitable training programmes could make the dogs far more beneficial and functional. My thoughts were confirmed in an NAS magazine: “We found having a dog and training the dog in road safety, etc., helped reinforce better behaviour for our quite severely autistic son when he was a child [ . . . ] Our non-pedigree dog lived to the good old age of twenty-one and gave our son a great gift: the breakthrough of communication, friendship and devotion.” – Maureen Erdwin.{1}

  Maureen’s son was now forty-five years old. I had seen this too, with added illumination from Dale, unpacking what had been his own severely autistic mind. In 1994, when I prepared my son for Henry’s arrival, my great concern had been the dog’s welfare. Dale, on some level, had to understand that Henry was a fellow being. His dog, like him, had emotions and needs; he was no cuddly toy! My programme had to recognise how a child with ASD learns. By seeing, hearing, doing with repetition, people with ASD learn in a literal way. Everyone involved with them must be consistent, and use minimal language. The six-second rule is golden. This means that when engaging verbally with a child you allow six seconds for them to process information before they reply. The child must be rewarded when they have understood so the child learns communication works!

  When Dale’s autism emerged, I had sought guidance from Jim Taylor of Scottish Autism. He stressed that it was essential to get the educational approach right, and never deviate from it. And so it is with dogs. Years before, my dad had explained canine training: first get the dog’s attention by saying its name. Be consistent. When the dog obeys, give treats as rewards accompanied by verbal praise (positive reinforcement). These unbreakable rules made sense, and with patient persistence, our family dogs were core trained. In 1991, Jim’s advice rang true; the principles were the same.

  Henry’s arrival had been a major transition. I engineered it that the dog became my son’s ultimate obsession. Weeks in advance, I was teaching him all things dog related, the process I now call “dogifying”. This means exposing the child to suitable games, books and DVDs in order to make that needed connection. Jim emphasised that this phase should take two to three months, and in keeping with the literal learning pattern, social stories and pictures needed to be realistic.

  My programme would have to address individual needs, with appropriate short- and long-term educational objectives. Interventions would be planned, implemented and evaluated with accurate indi
cators covering improved communication, imaginative and social skills. Ultimately, it sought the greatest possible independence for each child. Using the dog in this way addressed the triad of impairments, and simultaneously mirrored the school’s approach.

  The resources I developed were basic and articulated without dramatic changes. There was another vital function. I felt strongly that siblings should be involved. I tapped into my father-in-law’s drawing skills. He produced line drawings of the “stand”, “sit” and “down” positions as language and colouring resources, to be introduced one at a time. The educational potential for each resource was nigh endless and gave meaningful language opportunities well ahead of the homecoming.

  I took pictures of dog equipment; perhaps most importantly, several of the raised feeding table, showing two full bowls – dry food and water. Using a table was better for the dog’s digestion and the height and stability was easier and safer for the child to use when feeding and replenishing water. Additionally, the table gave the positive social rule that people, like dogs, eat at a table. There were pictures of the dog’s fleecy bed, brush, comb, toothbrush, toothpaste, all reinforcing that the dog has the same needs of care.

  A fun, quacking furry duck was also part of the package, which I hoped would be a good language and sensory resource. It was also more appealing and easier to manipulate than a ball. Like children, dogs want to play with toys. The duck’s main purpose was to allow me to research a particular interest of mine. If the child saw the dog repeatedly fetch, would the child also engage in the game? This was an ambitious goal, as a simple game like that is difficult for a child on the spectrum. He needs to understand the vocabulary, and his lack of imagination and social awareness would be problematic. Hand-eye co-ordination, poor motor skills, spatial awareness problems and difficulties in understanding social timings added to an already volatile mix. Yet, Dale and Amy had managed with Henry. I needed to find out.

  Finally, I incorporated a rubber Kong, which is good for dogs to chew; the child learns to fill it with food and to give it to the dog themselves. The Kong offered learning and interaction, and so much more.

  When the child became familiar with each picture, the images worked into a story and the parent and teacher could be certain that the child understood all the dog’s needs. There were line drawings of the equipment too, for fine motor and language work. Three dog songs were downloaded onto CDs – “Who Let the Dog Out?” even had real barking noises! I found uncomplicated dog storybooks, which could be “vandalised” and adapted, just as I had once done with the Heaven book.

  I also wanted to explore if introducing a preferred colour would help increase bonding. My own children, like the majority on the spectrum, had postive colour connections. The range of colours was potentially as varied and individual as the children themselves.

  Dale’s was “Thomas Blue”, which he adopted, aged two, on the very day he found the train. At the same age, Amy took ownership of red, and at six she told me it was because she loved Winnie the Pooh’s jumper! At St Anthony’s School, it was easy to recognise the paintings on the walls. Dale’s were always shades of blue, while his friend Ryan’s were predominantly pink. I saw the possibilities! Henry wore a blue lead and collar, with his master’s picture attached. Now, taking this further, I designed a harness with a hook at the top for the child’s lead, and with another at the bottom, suitable to attach toys, pictures or little bags or purses. I ensured there was the opportunity for all sorts of progression without unnecessary and intrusive change. From the international dog model, I learned that the child holds onto a long handle attached to a harness. However, as the child grows this approach would need to change – a handle is far from a standard lead, and wouldn’t be practical indefinitely. I found a range of coloured leads made from broad nylon webbing with a second hook at the hand loop, to enable the lead to be made half size and form a secondary loop, just like a handle. Later, the half lead could be unhooked again to form a full lead. I wanted the lead to be special, as many of the children play with ropes or plastic tubing to reduce anxiety. So, it had uses even without the dog.

  By extension, I had to discover if using the child’s obsession would help the bonding. I had utilised Dale’s obsession with Thomas the Tank Engine until it ran out of steam! Henry’s treats were stored in a “Thomas” tin, as were his master’s! That dog had a sound reason for his name!

  As I worked, Jim Taylor’s advice to keep things real kept coming up. I had used a little soft yellow Labrador toy, in tandem with real equipment, for weeks on end with Dale. We brushed and fed the toy, sang dog songs daily, as if the toy was real. From this I created what I now call “The Cuddly Pack”. This was developed with the help of another unique autistic mind . . . Amy’s!

  We set off to IKEA to view their permanent range of these toys and their extensive pet department. Our first purchase was the dog. I opted for the little one. Wrong! Amy retorted, “Nuala, you need the big one. He’s the right size.”

  I pondered; the big one was two-foot long and floppy. She clinched the deal. “Nuala, you could put more stuffing in him so he makes a good . . . Golden Pillow!”

  Often during Dale and Amy’s childhood, I would find them both fast asleep using a comatose Henry as a pillow. Their heads would be resting at his heart, and neither would budge for hours. Amy called this her “Golden Pillow”. Until she was eleven she struggled to sleep and her “Golden Pillow” worked every time. I realised the dog had some positive sensory stimulus for them. Aged ten, my daughter explained, “Nuala, I like the feel of the dog’s soft fur, and it makes me feel good to flick his ears. The noise from his heart and him breathing up and down helps me sleep.” This made sense. I thought the “Golden Pillow” was unique to my children. However, in the future, because of Henry, I was to learn to the contrary.

  With the cuddly thing sorted, I bought the equipment I’d shown in the resources and put it together, with a key ring picture of Dale as a child, attached to the collar, to demonstrate that the cuddly toy and its things belonged to him. I added a blue towel, sewed on a paw print and put on an elastic loop to make hanging it up easier. This would help teach the child to take care of his or her dog, and learn to hang up their own coat.

  I included a pink lead for any potential sibling. Siblings would be fantastic role models for the child in learning to share and play with the pack. The pack’s uses educationally were endless. Consider the fear a child with ASD has when faced with the purchase of new shoes or clothes. The “dog” could be dressed appropriately for the trip, even shod! The potential for fun, imaginative and educational play was clear and long lasting. All this geared up to the arrival of the child’s real dog, and all that equipment would be transferred.

  The toy’s fleecy bed would be a liner for a plastic tub bed. It was so important that the dog had its place for time out and rest during the day. I was determined that the dog would not be subjected to constant working or handling, and so I downloaded pictures of a sleeping yellow Labrador. I hoped the cuddly pack would help the child connect with the real dog, increase social and emotional skills, address sensory issues and introduce meaningful language for the child. No small aim in one wee package!

  Just as I had done with Dale, all the teaching would be done through the dog. I wanted the commands to be a platform of core language for the child. I modified the assistance dog training commands, mindful not to overload the child with language. Using the word “toilet” for the dog transferred naturally to the child. For crossing the road: “We stay. No cars, we go!” It was building up. I used the same Makaton signs I had already used with my own son. Makaton is an internationally recognised sign language that uses hand signals with the spoken word. It helps the child understand and learn to communicate. Therefore, to be consistent with the child and the dog, I used the same hand signals from the Makaton system for “sit”, “stand”, “here”, “come”, “eat”, “leave” and “fetch”. Learning from his dog, I used to ask Dale to “fe
tch” his coat, “eat” his dinner, and “leave” things that were dangerous.

  The more my programme evolved, the more my approach deviated from that of the working dogs. Guide and assistance dogs are trained with strict boundaries. My programme gave the dog free run of the house. I felt the dog should feel comfortable with the child, even sleep with the child if it helped, be it on the sofa or in the bedroom. Let’s face it, almost anything if it helped the child improve or become calmer. I wanted the child to take ownership and care for their dog. I wanted to enable them to transfer the skills they needed to be able to take care of themselves.

  As the weeks passed, a four-stage programme emerged which would take the child through life transtions until the dog’s demise. In order to help the comprehension of these life events, I adopted the traffic light system that is often used in schools.

  Red Stage: Stop and prepare the child for what a dog needs.

  Yellow Stage: Wait and prepare the child for the real dog coming.

  Green Stage: Go for using the dog as an educational facilitator and motivator in its wildest sense!

  For later, hopefully much later, the Blue Stage: The child learns the dog is old and finds out how to let go. All this was timely.

  Dale’s Open Learning course was going well and remained blessedly uneventful until February, when the February mid-term holiday of 2008 offered us an enjoyable, but unconventional, break. Neil Ashworth arranged for us to visit Irish Guide Dogs, in order to see their Autism Assitance Dog Programme and share ideas.

  The boys were booked into The Happy Hound Hotel, a luxurious boarding facility in Port Glasgow. They shared their own bedroom in a basement of a big country house. Their room had toys, water on tap and real sofas to sleep on. They had access to acres of hills, with panoramic views of the River Clyde. They also had the option to mingle with the other canine guests!