All Because of Henry: My Story of Struggle & Triumph with Two Autistic Children by Nuala Gardner eBook 2013; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (19% indicates location in the Kindle version of the book, instead of page numbers).
Excerpt from A Friend Like Henry, (1st book) by Nuala Gardner, eBook 2008 –
19% We woke up the next morning to two things: the surprise that there was no Dale in the middle of our bed and a lot of noise from him downstairs.
“What’s all the commotion?” asked Jamie… “That’s not commotion, its communication. Listen to all the language he’s using.”
Dale was saying, in an uneven, sing-song style, “Henry puppy, Duck, puppy…Give it to Dale.” All of this was punctuated with shrieks of laughter and little yelps from (his puppy) Henry as the two of them engaged in boisterous play together.
We wanted Dale to learn how to take care of his dog and ensured he was fully involved with all aspects of looking after Henry. We hoped that in addition to the benefits this would have for Henry, Dale might also learn some things about looking after himself in the process.
Dale had never previously shown any desire to wash his hands without prompting and constant supervision. Now before we would start to feed Henry, we would wash Dale’s hands, and ours, and through time Dale was happy to apply this skill on his own because he was doing something for his dog.
22% A whole new world opened up as we visited dog shows and went for regular walks with Henry. Dale is now a participant in life, not just an observer.
End of excerpt from A Friend Like Henry
Note: November 10, 2014
Dale is deeply saddened to announce that his beloved dog Henry passed away suddenly on Thursday 23rd October. Henry was only 9 years of age and was in good health so his death has been a great shock to us all. Dale said, “Henry was a very special dog to me. I trained him myself and he got me through many hard times I faced as an adult, I miss him so much.”
=================
Excerpts from All Because of Henry: My Story of Struggle & Triumph with Two Autistic Children by Nuala Gardner, eBook 2013; an Extended Review with < My Thoughts > by Sara Luker –
1% Henry – all four legs and tail – our beautiful, noble golden retriever. Everyone who knew him agreed. He was to become Dale’s first real friend and he was the perfect gentleman.
As you have read in my first book – A Friend Like Henry, this was no ordinary dog. He did the extraordinary: he gave me hope when I had none. It was Henry who freed my tormented son and it was Henry who would throw us both the lifeline we needed.
Dale’s autism was so severe that family life was extremely difficult. We simply didn’t know what to do. How to get through to our son and give him the help he so badly needed.
Then came Henry. I was able to see Dale’s future. It would be confident, fully productive, a professional member of society. Would that it were to be so simple.
“Mum, due to Henry I am not scared any more of being an adult. I have decided that for the rest of my life I am never going to let my amazing dog down, so that he wil be proud of me, as I will always be of him.”
2% This would not be Henry’s final gift to my son, nor indeed to me and my daughter, Amy.
Amy was my millennium miracle baby, who had been diagnosed with moderate autism when she was only two years old. Thanks to Henry, both my children were reaching out to consider exciting futures. This is a story of our journey together into those futures.
However, to begin this new journey, as a family we had to get through the hardest day of all… the first day without Sir Henry. Six months before Henry’s passing, Dale had the foresight to acquire a puppy, and insisted on calling him… Henry!
We managed to live quite normally with two golden retrievers in our home with the same name. Dale knew the Wee would never replace Sir, but he needed to hold onto that name. And quite rightly, too!
3% I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!
Dale chose the most expensive outfit on the rail – the designer suit. After much deliberation his dad and I decided that no matter what we would support him in his pursuit of his profession. He was returning to a system which had helped him be the person he was today, and that was huge.
6% If only all the people to have involvement in Dale’s future would be as understanding and supportive of his achievements.
Amy’s quality of life and progress at school would have been very different, without her friends. Even in that very first year of school, that was apparent.
9% For those affected by autism, having a friend is every bit as important as it is to anyone else, yet it is possible the most complex challenge of all. Friendship, after all, imparts social belonging and is inclusive in a real meaningful way.
Both my children have often told me that they hated the isolation when they couldn’t engage or integrate socially.
Both have told me that in an attempt to cope, they would withdraw more into their autistic world, immersing themselves further into their obsessions as a substitute for company.
I never underestimate the need of anyone, anywhere on the spectrum for friendship. One child with Asperger’s asked his parents if there was a shop called ‘Friends Are Us’ where they could take him to buy a friend. How much we neuro-typicals take for granted!
A recent report by the National Autistic Society revealed that over 40% of children with autism have no friends. Unsurprisingly, these socially vulnerable children and adults make easy targets for bullying. Many children cannot survive in ‘mainstream’ classrooms for this reason.
Amy was one of the lucky ones. Her teachers knew how to work with her autism in a positive way. Small but constructive adjustments made a huge difference. The award of a horse sticker instead of a star, being allowed to draw horses in her busy book on completion of classwork or work well done, all these little things added up.
Dale’s educational motivators has been trains and dogs.
Both children had sensory integration issues. Practitioners now understand how sensory stimulus can overload an environment. Sensory issues alone can have a direct affect on the person’s ability to cope with situations, and it can completely undermine their receptiveness to learning.
Consider the sensory stimulus in a classroom: the glare of strip lights, the wall displays of paintings and projects, all the colors and endless information. Think of the sounds and smells of the seats and desks! No wonder they become overwhelmed. Add people into the mix.
Even to this day Amy still struggles, particularly with food, let alone with the environment in which she is eating. For example, one day not too long ago, as I was crunching away at my cereal, she said, “Nuala, eat your breakfast in another room. The noise hurts my ears and the look and smell of it makes me feel sick.”
< My Thoughts > “The noise hurts my ears and the look and smell of it makes me feel sick.”
Retrieved from: https://www.sensory-processing-disorder.com/sensory-defensiveness.html
Sensory Processing Disorder – also known as Sensory Integration Dysfunction is still in the process of becoming widely accepted and treated by all professionals. Even though the theories have been around for almost four decades, much still needs to be done before children who are behaviorally and emotionally imprisoned by their perception and interpretation of sensory input.
Auditory Defensiveness – Over sensitivity to certain sounds, or frequencies. They may cover their ears or make sounds in an attempt to block out the offensive noises.
Olfactory Defensiveness – Certain smells may make a child agitated. The child may turn away, leave the room or even throw up if becoming overly nauseous.
Our Sonny comforts himself by making noises, pushing music buttons on his board books, or by throwing things around the room when really agitated and sensory defensive.
10% Dale’s ten-year affair with Thomas the Tank Engine wasn’t as intense as how six-year-old Amy was able to manipulate anything and everything to bring horses into the equation; especially in her primary years. With Amy’s autism her obsession with horses was even fiercer than any of Dale’s childhood obsessions.
As every mum knows, the beginning of school is a time of scraped knees, bugs and illnesses. Amy certainly had her fair share of all that. One week she was unsettled and unhappy, repeatedly telling me that she had a sore eye.
She insisted that her eyes were really painful. I drew on her obsession. “Amy, how sore is you eye? Is it a walk, trot, canter or gallop sore?” “Nuala! It’s galloping sore!” now I knew that she was in real pain. With Dale I had been able to use the colors and numbers of the Thomas trains to express his pain and anxiety levels.
It is essential that mechanisms are put in place to allow a child to communicate and express their negative feelings or needs. Failing to do this is disastrous. Otherwise, what are children with autism to do? Their pain confuses them. How dangerous when they are unable to express what is wrong.
11% With Amy settled into school, it was time to focus on Dale. We were determined to help him access college. When he qualified, he would have the same rights to employment as any others of his generation. But to get there, Dale had many more hurdles to overcome than most.
Firstly, he had to cope with and integrate into a big college environment. I must stress that he needed the many specialized skills of a variety of integrated services. In those fifteen years since his diagnosis I had come across a very extreme range of professional abilities and aptitudes.
Dale needed to demonstrate that vital in-depth knowledge that he needed. A local transitional social worker helped with that. She ensured that Dale received the support he needed to transfer from school to college.
Her input was life-changing. With benefits in place and with Joyce’s support and Dale had a decent income for college. Her next task was to help him get a travel card for subsidized public transport use. This would allow him greater freedom, without worries about costs.
12% The Scottish Society for Autism and related organizations launched the Autism Alert Card. Each individual’s card is registered with the resource center and endorsed by the police. If Dale found himself in a potentially precarious situation, or in the event of police involvement, he could present his card.
As his parents we never subsidized Dale at all. He bought all his own clothes, DVDs and CDs. He paid for Henry’s food and insurance. He learned the value of money as well as how to manage it responsibly and quickly. He became adept at finding the best deals. Often, he’d comment on prices.
Some transitions are so simple – painting a classroom another color, a changed room layout, new furniture, a different teacher. Major transitions like leaving the familiar secondary school to the navigation of a big, college environment had to be addressed and planned months ahead.
13% Many high on the spectrum are very intelligent and well educated. Dale and his peers are meticulous regarding routine, rules and accuracy. Generally they are reliable, hardworking, with the potential to excel in professions like accountancy, engineering and computer sciences. Others like repetitive tasks, both basic and complex, and so are capable of succeeding in areas like IT and administration. There is evidence that people with ASD are often motivated workers, thriving in structured, well-organized workplaces. They have great attendance records, potentially lower staff turnover rates. Adults like Dale have the capacity for lengthy, undistracted task focus, following policy to the letter.
Dale has never been late for work – actually, he’s always early! Merely being on time would induce too much anxiety, so just starting on time for him means… being late. This group could never wrongly phone in sick or take a day off. The pressure of lying would be overwhelming. Imagine a workforce with all these personal and business qualities! How many millions might that save employers and our economy?
Yet, only 15 per cent of UK adults with autism are in full-time employment and only 13 per cent in permanent employment in Scotland. The NAS has revealed that 51 per cent of the UK group has been unemployed without accessing state benefits. (National Autistic Society of the United Kingdom www.autism.org.uk)
14% Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practicing in a local community recording studio.
16% When Dale’s severe autism was recognized in 1992, I wanted desperately to try to make a difference to the cause and to help other parents in my situation. I had always been heavily involved in support groups, awareness campaigns for the NAS and for Scottish Autism. It was all a great experience but my efforts never seemed to reach the masses or achieve as much as I would have liked.
The work and commitment involved was overwhelming. Nevertheless, it was always worth it. Dale and Henry’s story broke in 1995, when I won a short story writing competition. I could never have dreamed how it would change all of our lives forever – and not just ours, but the lives of thousands of others affected by autism.
At the time there was vast media interest in Dale’s story, eventually leading to one of the best projects I would ever participate in, on which would raise autism awareness to 6.5 million people in the UK mainstream alone.
17% At the time when the story went public, Dale’s best friend Scott commented, “Nuala, Dale was a nightmare when he was a wee boy!” I know he used much stronger words to Dale, personally!
Dale’s friends were really proud of him and impressed by all that he had achieved. Dale understood that a major part of his success was down to these superb boys being his friends in the first place. We owe them that, forever.
24% It was such an exciting autumn for all of us. From my perspective, the positive book reviews continued and I received letters, both heart-wrenching and uplifting, from parents and professionals. But things between my husband Jamie and me grew increasingly frustrating.
Dale’s story had touched these people, and how, in turn, their tales were touching me. A regular feature of the mailbag was correspondence from parents seeking advice on how to find and use a dog to help reach their own child. I advised them as best I could. Curiously, I have never really considered the strategies I’d used with Henry and Dale. I just did it!
That October, I became aware of a real need for some kind of dog-autism program. As I wondered how to devise something suitable, I received an email from a friend who had stumbled across the Autism Assistance Dogs (AAD), run by Irish Guide Dogs for the Blind (IGDB) in Cork.
This charity was placing purpose-trained, mature dogs with families of children with severe autism throughout Ireland. I was intrigued, and checked their website.
What I was to discover hooked me. I phoned Neil Ashworth, their autism assistance dog training manager.
As fate would have it, Neil had read my book and he was planning to contact me!
We both wanted to develop ideas, with Dale’s guidance, knowing we had an advantage: he could explain exactly why Henry worked! His recollections, both good and bad were vivid.
The temperament of any working dog has to be exceptional, and autism dogs were trained, specifically, to cope calmly with the difficult home environments and extreme behaviors that accompany a child with severe autism.
Amongst his many duties, the dog has to keep the child safe outdoors and in public places with their parents; he must assist at busy road crossings – many children with autism have bolting behaviors and no sense of danger. They may throw themselves to the ground, and more, much more – just as Dale had done.
27% Meanwhile, I started to worry about Dale as he set off for college, his eyes dark and sunken, blinking furiously. He could barely talk for stammering. He had started to tic.
Like many with autism, Dale has periodic autistic tics similar to the involuntary muscle movements suffered by a person with Tourette’s Syndrome. On the rare occasion it happened, it was a serious sign he was in autism crisis.
< My Thoughts > “…Tourette’s Syndrome.”
Retrieved from: www.cedars-sinai.edu
Tourette syndrome is a neurological disorder that causes people to make unintended sounds, words and body movements, called tics. These tics may last from several seconds to minutes, and have no meaning to that person.. Most people have their own unique type or pattern of tics. Severe episodes can interfere with the person’s daily lives.
28% “Mum, I’m really sorry to let you all down, but I can’t take it anymore. I want to leave college. Mum, I’m beat! Please help me get out of there.”
“Dale, go to Glynhill – just to get your progress reports. I guarantee, you will not be going back to college or Glynhill until we meet with your trainer to sort this mess out!”
What on earth was going on? A trainer who didn’t understand her job? A trainer who didn’t understand autism?
What we found out was that they thought Dale was not working at a satisfactory level. “Dale needs an awful lot of support and direction. He needs extra time if he’s to achieve his goals.”
< My Thoughts > “Dale needs an awful lot of support and direction.”
Bowler, et al. (2015) tells us that the difference between ‘supported’ and ‘unsupported’ tasks is revealed in this study. Participants found that seeing things in a specific order as with an organizational chart or by being given auditory cues helped them become more effective. Having support improved recognition of the order of events.
They went on to say that those with autism have different degrees of difficulties with memory and need to be cued to recall or recognize steps in a task or function. In the ‘discussion’ of the results, it was suggested that future support should be a result of spending time understanding and unpacking the complexity of the task. That it is necessary to recognize that those with autism need support to a greater extent than the typical person learning a new task or operation. One suggestion was that the designers of supported environments and educational settings compartmentalize and label tasks or operations into blocks labeled Block A, Block B, etc.
28% Thud! Dale was entitled to extra time and human support. Support that apparently had never been implemented. Suddenly I became focused, my anger found its direction.
30% “Dale, if we can improve things for you at college and on placement (where he was working in the nursery with autistic children) would you still want to leave?”
“Mum, I like working with the children. I won’t give up, but I feel I can’t go back to college ever again.”
“Oh, son, I was in awe of you then. I still am.” Finally, he relaxed knowing we were going to fight for his right to be treated fairly and have the same chances as any other student! For the first time in weeks, he slept.
We had fought similar battles for Dale in the past and won, but this one was to be our ultimate crusade. Facing another war, we would need new armor, fresh defenses.
Dale had endured the torment of bullying at school, like over 40% of autistic children. Now this!
31% It wasn’t Dale’s failure, but the college’s failure: “To make reasonable adjustments for Dale. He should not be treated less favorably because he has a disability.”
For what seemed the hundredth time in a lifetime of composing fighting letters, we were once again taking days to perfect that all-important letter for Dale’s future.
Parenting a child or adult with autism is a sufficiently demanding task, but ask any of those parents to try to count the desperate hours spent on computers, researching and learning about their children’s rights, the days and nights sweating over letters, possibilities, impossibilities, hopes – well, ask them! There’s no way any of us can quantify that.
I spent ages on the phone to the Equality and Disability Rights Commission for guidance on what to include in our letter. However raw our feelings, it had to be the most professional letter possible.
“To make reasonable adjustments, [Dale] should not be treated less favorably because he has a disability.” We quoted this from his college’s Disability Equality Duty 2005.”
The first apology we received was lost on us. “We didn’t think anyone would have taken the job.” All the director’s energies were directed at defending his staff. A few days later, we received a letter confirming an action plan, which would allow Dale to complete his course. Dale would have access to the College Supported Learning Department… to ensure inclusion and to help him access the syllabus.
< My Thoughts > “To make reasonable adjustments…”
Wentz, et al. (2012) explored the idea of using technology to help support adolescents and young adults with ADHD and autism disorders, in employment and educational settings. The idea was based on the concept that it would be easier to get additional support from a coach in an online ‘Chat Room’ setting which could be accessed during the day between the hours of 2 – 4pm.
Because the traditional ‘face-to-face; communication is difficult for most individuals, a computer-mediated communication from one’s home was thought to be an easier facilitation of support. The coaches available during this time period were either clinical psychologists or educational therapists with the common denominator of having vast experience with this population.
The participants could also fill out a survey to help them more clearly define the problem they needed help with. For instance, they could answer ‘yes’ or ‘no’ or rate the problem from a high 10 to a low 1. Some of the choices were. “Did you know enough today to help you with your difficulties?” “Did you feel prepared today?” “Does your coach recognize and respond to you when you are having a problem?” “How did you feel today when demands were being put upon you?”
Some of the problems with this form of support were voiced from the participants, such as – Don’t always have access to the computer during the timeframe of 2-4pm. Others said that no significant improvement in ‘quality of life’ was achieved for several weeks (not immediate enough). There were those who wished they could talk to the same ‘coach’ instead of possibly getting a different one each time.
Several said that they didn’t know enough about their ‘difficulty’ to express themselves clearly to the coach; that the questionnaire didn’t provide a way to identify the problem to their satisfaction. At the end of the program though, most felt they had greater self-esteem because of the chat room experience.
32% This was not a luxury but a right. Dale’s adjustments required a support person qualified to work with him. He would be allowed two submissions of assessed work, as well as other support. He was also allowed a new placement.
Feeling much better, Dale ventured into his new placement, autistic tics gone. He was sleeping and eating well and looked so much better. The relief for all of us was immense. Our hopes resurfaced.
A few days later, an upbeat Dale casually mentioned a strange quirk of fate. His trainer, from fifteen years ago was newly qualified to work at the nursery. She could see how far he had come. 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.
Dale was nominated for the college’s Adult Learner of the Year Award and again we had hope for his future. He wasn’t going to be defeated – autism or no autism!
Dale thrived under the new plan, plus some unanticipated “additional support”. Within five minutes of Dale getting up in the morning and beginning his study routine on the computer… 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. 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. Their deep restful breathing had a calming influence which helped Dale work longer.
Meanwhile, I was bursting with inspiration, and so began to develop transitional resources for an educational program, 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 programs could make the dogs far more beneficial and functional.
< My Thoughts > “Suitable training programs could make the dogs far more beneficial and functional.”
Assistance dog programs…Before we retired, my husband and I trained service dogs for children with disabilities. In our program we spent a year obedience training the puppies first. That way, in an emergency situation the dog when ‘off lead’ can be commanded to – Stop, come, sit/stay, down, wait, back-up, heel, etc. After the dog was well trained for obedience, we trained for the child’s special needs.
As with most programs, we had a waiting list, a vetting procedure, and certain protocol that needed to be followed by the families of the recipients. If you are interested in getting a dog, do your homework and find the organization that is the best fit for you, and with whom you have the best chances of getting a dog. Understand that the beginning cost to the family will be between $10 -15,000. Know that there are sometimes waiting lists for two or more years, plus you may not be accepted or approved for placement.
Some of the other things to consider are that you will be ask to show that you can provide for the care, feeding, grooming and any veterinarian bills which may become necessary.
In the United States, the federal law Americans with Disabilities Act (ADA) provides ‘guidance’ for allowing assistance dogs in places of business; each state has its own guidelines. There are other regulations that may prevent service dogs from entering businesses. For instance, sterile places such as hospitals, clinics and doctor’s offices. Public and private schools have their own way of handling this situation. If the school does allow the dog, who takes charge of the dog if the child has an event where s/he is removed from the premises, as in a seizure where the student is transported off campus?
For our program, candidates were interviewed several times and we made home visits to assess the appropriateness of the setting the dog would be living in. We also had a strict ‘follow-up’ procedure where we made ‘surprise’ visits to the home to evaluate how the placement was succeeding. There have been cases where we found the dog chained-up in the backyard, or sharing space with other family dogs; instead of staying by the side of the child it was intended to serve and protect. Just saying.
32% Preparing my son for Henry’s arrival meant that on some level, Dale had to understand that Henry was a fellow being. His dog, like him, had emotions and needs; he was no cuddly toy!
33% My program had to recognize 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!
34% Jim Taylor of Scottish Autism stressed that it is 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.
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 phase should take two to three months and in keeping with the literal learning pattern, social stories and pictures needed to be realistic; games, books, DVDs, and CDs like ‘Who Let the Dog Out’, in order to make that needed connection.
34% My program would have to address individual needs, with appropriate short-and-long-term educational objectives. Ultimately, it sought the greatest possible independence for each child.
I ensured that there was the opportunity for all sorts of progression without unnecessary and intrusive change; as the child grows. For instance how the child holds the lead, half-lead, or handle attached to the dog’s harness.
35% My program gave the dog free run of the house. Guide and assistance dogs are trained with strict boundaries, but 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.
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 weeks passed, a four-stage program emerged which would take the child through life transitions until the dog’s demise.
44% With the summer ahead and my program in good shape, I just needed to find a family! Okay, I needed funding to really make things complete, but despite that things were taking shape. I wished someone had funded me, but it didn’t stop me. This was the dog on my shoulder and it wasn’t going away!
46% Working with my first family, it was thrilling to see another child learn through a dog as Dale had, seventeen years earlier. Communication works.
Without verbal or social pressure, we witnessed how children with autism are able to understand and begin to verbalize using a dog because of the consistent, non-threatening sharing the animal allows. The dog enables the child to engage and interact without the human’s social baggage. There are no complex facial expressions or language to bombard and intimidate.
I was beginning to recognize the piece of the jigsaw I had sensed was missing since Dale’s childhood. What was the dog doing right that we neuro-typicals were not?
48% As the saying goes, you wait for a bus then three arrive at once, and so it was with parents.
< My Thoughts > About having a Service Dog…
I’ve told you about our personal experiences involving a dog program, now this is some of what is out there in the literature. Stevenson, et al. (2015) found that having a service dog “encouraged and motivated children towards social interaction and away from preferred sensory or solitary activities.” That having a service dog furthered a naturalistic means to engage students with autism in their educational environment. “When a child is with the dog, he established his own world…”. Other merits they felt were the potential and importance of the non-judgmental quality of the dogs when the child had emotional or behavioral difficulties.
They also saw that children could ‘generalize’ what was being done with the dog to what they themselves did; that more ‘spontaneous’ learning took place. That was one of the reasons that Nuala was so successful with because she saw how Dale could learn from his connection with the dog.
I would just like to say this about that… my husband and I have seen many unexpected benefits from having a service dog in the home. Just one of many was that Sonny never looked to see where he was walking. He just ambled through the house stumbling in his uneven gait – before there was a dog sharing his space. Now he seems more aware of where his feet are going, so as not to step on the dog. But, as far as being approved to have a service dog accompany him to school, that was a ‘no go’. Yes, you can fight the system and draw even more attention to a child’s situation. We made a personal choice not to do that.
Butterly, et al. (2013) interviewed “five providers who prepared dogs to work with a wide range of conditions and behaviors, mainly Asperger’s syndrome, autism and communication disorders. The majority felt that after placement of the service dog the recipient had improved attention span, communication skills, and increased familial cohesion.” They established that “the parent was to be the primary handler of the dog, to maintain the training of the dog and to ensure the safety and wellbeing of both the dog and the child.” They also found in their inquiry that recipients “tended to overestimate the gains” expected from the dog placement. But they also said that there were unexpected gains in the reduced anxiety, increased empathy, and increased activities as a family.
61% While his driving had improved, Dale struggle to pass the theory test. Having failed two attempts. The test was multiple choice. I’ve been driving for more years than I prepared to say and I found the choices quite confusing. I felt the frustration Dale had, besides he had a condition called dyslexia. (Dyslexia is a neurological learning disorder where it is difficult to recognize speech sounds as they relate to reading and writing words.) I phoned the person who supervised the test, highlighting Dale’s difficulties. She agreed that the test format was far from ideal for candidates like Dale, but unfortunately it was the only one available.
< My Thoughts > “Passing the driving test…”
According to Brooks, et al. (2016), Young adults with Autism Spectrum Disorder (ASD) usually have certain symptoms which complicate their ability to master independent driving skills. Symptoms listed were – epilepsy, hyperactivity, aggression, anxiety and/or erratic sleep patterns. The study also indicated that young people diagnosed with ASD had difficulty with driving-related skills such as visual motor integration, motor coordination, speed regulation, lane maintenance and signaling.
They suggested introducing ‘pre-driving’ skills to increase ability with steering while operating foot pedals, use of both hands, eye-hand coordination and increased range of motion; with the ankle, knee flexation, and head turning. Other ‘interactive exercises’ like managing the dashboard side-by-side displays, upper body steering tasks while managing lower body pedal functions. They indicated that all things increasing attention and motivation, cognitive demands and dealing with sensory overload and anxiety. Video games were also considered to be helpful, especially ‘chase’ games.
I don’t think that I have to worry about Sonny driving anytime soon. His medication clearly states ‘Do not operate machinery and his ‘Sippy’ cup won’t fit in the cupholder. Smiles.
62% Finally the time came when Dale felt he was ready to that his third attempt at his driving theory test. On the big day, he set off feeling more confident, agreeing he would phone me only if he passed. An hour later the phone rang. “Mum, I passed! Did it by a ba’ hair, but I don’t care, as long as I passed.” Hearing this Amy ran to make Dale a congratulations card, complete with a blue sports car.
65% November was a depressingly dreary month, and not just because of the climate. Now that he had passed his theory exam, Dale’s driving instructor advised him that he was ready to sit the practical test. On the day of his test, the weather was horrendous, all torrential rain and winds.
Dale was coming up the stairs. I continued to drink my tea, determined to keep things low-key as he loped into the lounge. “Mum, have you seen the weather? It’s mad out there.” Then came the bombshell.. “Mum, I passed!”
I ran up to him, I was just so thrilled that something had gone right at last for him, against all the odds. He still wasn’t in permanent employment and the chances of him being able to afford a car were non-existent. I knew he felt that too.
< My Thoughts > “Mum, I passed!” …I was just so thrilled!
Cox, et al. (2012) explain how parents’ experiences regarding their young adults with ASD who were attempting to learn to drive effected them. Parents worried about driving demands, multi-tasking and the fear that not achieving driving skills would severely limit their child’s independence and lifestyle.
Parents were also concerned about their child’s ability to generalize (transfer learned skills to a new situation) from the learning setting to actually driving and felt they must require specialized training in order to learn to drive safely. That they needed to know how to deal with the substantial challenges of managing ambiguous situations, of anticipating moves by other drivers, and of dealing with weather and roadway conditions.
Yet another article cited all the above, plus concerns about ‘social processing’ such as “sharing the road” and taking longer to process what they are seeing and how to respond to it. Also mentioned was the chance that drivers with ASD may not respond appropriately when and if the driver is not visible in the vehicle, like a bus or if a driver is behind darkened windows. Hmmm…
66% “Dale, here’s the car keys. Go and get Amy from school” “Are you sure, Mum?” “Yes, you’re legally allowed to drive. I’ve put you on the insurance. There’s no time like the present to get going!” Off he went. I loved watching him driving away. His new freedom was wonderful for both of us. He especially liked driving the boys to Battery Park.
November 2010 brought some of the coldest days any of us could remember.
74% (At this point in my life.) There was so much loss. My marriage, my nursing career, and now this. Sure, there was the canine education program, but none of that was secure, it was only in its infancy. I had no money, no dogs – no nothing to advance my ideas! No nothing! I was at my lowest ebb.
75% Then there was a phone call.. “It’s Alberto, calling from Spain.” It had been four years since I had seen Alberto. Refreshingly, he had lost none of his enthusiasm. He brought good news. His friend Beni wanted to translate my book into Spanish. Marvelous! That wasn’t all.
“Nuala, we have placed a few dogs with severely non-verbal autistic children, and it has gone well.” “There have been some problems – but not with the dogs!”
I felt alive again. My hopes soared! Our program, where children chose their “own” colored dog lead, would be unique I was inspired!
< My Thoughts > “Our program, where children chose their “own” colored dog lead…”
Retrieved from Nuala’s website –http://nualagardnerautism.com/
“The program is based on my own research and experiences from both my books. Reading both books isn’t compulsory, but strongly recommend for those interested in using a dog to help a child or adult with autism or disabilities. My program addresses individual needs, with appropriate short and long term educational objectives. Resources I’ve developed are basic and help siblings to be involved.”
“I’ve ensured there’s opportunity for progression without unnecessary and intrusive change. Naturally, I use the child’s obsession which increases the child’s bonding with the dog. As I created the program, I have adhered to… JimTaylorknowsautism.com… advice … to keep things real!”
“With Dale, weeks before Henry the puppy arrived, I used a little soft yellow Labrador toy, in tandem with real equipment. We brushed and fed the toy, sang dog songs daily, as if the toy was real. From this I’ve included in the program what I now call, “The Cuddly Pack.” This was developed with the help of another unique autistic mind my daughter Amy!”
“I’ve been able to tap into both my children’s autistic minds to ensure I’ve got the resources and my approach using the dog as an educational facilitator… right! The potential for fun, imaginative and educational play is clear and long-lasting. The manual guides the “user” through a… four stage program that takes the child or adult through life transitions until the dog’s demise. I’ve adopted the traffic light system which 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 education and best independence possible using the dog as a facilitator.” “For later, hopefully much later, the Blue Stage. The child learns the dog is old, is taught the concept of Heaven through an adapted children’s story book about a dog, and learns to let their pet… go!”
“Interested parties who buy the manual can access my service to support them through the program, as a mentor or on a one to one basis. The manual can be purchased and posted through this website.”
80% My career path – if that’s the right term for it – was progressing. So far there wasn’t exactly money and a pension plan in it, but whatever it was growing into was fitting me very well indeed. I felt purposeful. I just kept hoping that all the trappings would follow…
==============
< My Thoughts > How Nuala, Dale, Amy and Jaime are doing now…
From Nuala’s website on February 18, 2016 –
Learn how to use my program… go to my website http://nualagardnerautism.com/
I will be offering consultation and workshops on the use of the program I have developed that can help make a huge difference if you have a son or daughter with autism.
As promised by Alberto I worked directly with him for three weeks with Guidedogs Queensland pilot for Autism Assistance dogs. Apart from seeing the Gold Coast I worked with four families where the dog would service two affected children. It was wonderful and memorable with experience for life!
I'm really pleased to promote Dale's band's new single and music video, which I feel is excellent, although i'm naturally biased. Dale is the bass player wearing the flat cap. This video is proof how far he has come and how superb a quality of life he now enjoys. For parents I wish this gives them much hope, for their own children future! https://www.youtube.com/watch?v=Jb5DuNjbHXY
End of Excerpts from book with < My Thoughts > by Sara Luker
Note: Nuala's 1st book is on Menu... A Friend Like Henry
=====================
Resources used in < My Thoughts > are:
Bowler, D., Galgg, S., Gardiner, J. (2015). Brief Report: The Role of Task Support in the Spatial and Temporal Source Memory of Adults with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V45, p.2613 - 2317.
Brooks, J., Kellett, J., Seeanner, J., Jenkins, C., Buchanan, C., Kinsman, A., Kelly, D., Pierce, S. (2016). Training the Motor Aspects of Pre-driving Skills of Young Adults with and without Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.2408 – 2426.
Butterly, F., Percy, C., Ward, G. (2013). Brief Report: Do Service Dog Providers Placing Dogs with Children with Developmental Disabilities Use Outcome Measures and, if so, What Are They?; Journal of Autism Developmental Disorders; V43, p.2720 – 2725.
Cox, N., Reeve, R., Cox, S., Cox, D. (2012). Brief Report: Driving and Young Adults with ASD: Parents’ Experiences. Journal of Autism Developmental Disorders; V42, p.2257 – 2262.
Stevenson, K., Jarred, S., Hinchcliffe, V., Roberts, K. (2015). Can a Dog Be Used As a Motivator to Develop Social Interaction & Engagement with Teachers for Students with Autism?; Support for Learning; V30, p.341- 362.
Wentz, E., Nyden, A., Krevers, B. (2012). Development of an Internet-based Support and Coaching Model for Adolescents and Young Adults with ADHD and ASD; a pilot study; Journal of Early Child & Adolescent Psychiatry; V:21, p611-622.
=====================
Excerpts from the book – (19% indicates location in the Kindle version of the book, instead of page numbers).
Excerpt from A Friend Like Henry, (1st book) by Nuala Gardner, eBook 2008 –
19% We woke up the next morning to two things: the surprise that there was no Dale in the middle of our bed and a lot of noise from him downstairs.
“What’s all the commotion?” asked Jamie… “That’s not commotion, its communication. Listen to all the language he’s using.”
Dale was saying, in an uneven, sing-song style, “Henry puppy, Duck, puppy…Give it to Dale.” All of this was punctuated with shrieks of laughter and little yelps from (his puppy) Henry as the two of them engaged in boisterous play together.
We wanted Dale to learn how to take care of his dog and ensured he was fully involved with all aspects of looking after Henry. We hoped that in addition to the benefits this would have for Henry, Dale might also learn some things about looking after himself in the process.
Dale had never previously shown any desire to wash his hands without prompting and constant supervision. Now before we would start to feed Henry, we would wash Dale’s hands, and ours, and through time Dale was happy to apply this skill on his own because he was doing something for his dog.
22% A whole new world opened up as we visited dog shows and went for regular walks with Henry. Dale is now a participant in life, not just an observer.
End of excerpt from A Friend Like Henry
Note: November 10, 2014
Dale is deeply saddened to announce that his beloved dog Henry passed away suddenly on Thursday 23rd October. Henry was only 9 years of age and was in good health so his death has been a great shock to us all. Dale said, “Henry was a very special dog to me. I trained him myself and he got me through many hard times I faced as an adult, I miss him so much.”
=================
Excerpts from All Because of Henry: My Story of Struggle & Triumph with Two Autistic Children by Nuala Gardner, eBook 2013; an Extended Review with < My Thoughts > by Sara Luker –
1% Henry – all four legs and tail – our beautiful, noble golden retriever. Everyone who knew him agreed. He was to become Dale’s first real friend and he was the perfect gentleman.
As you have read in my first book – A Friend Like Henry, this was no ordinary dog. He did the extraordinary: he gave me hope when I had none. It was Henry who freed my tormented son and it was Henry who would throw us both the lifeline we needed.
Dale’s autism was so severe that family life was extremely difficult. We simply didn’t know what to do. How to get through to our son and give him the help he so badly needed.
Then came Henry. I was able to see Dale’s future. It would be confident, fully productive, a professional member of society. Would that it were to be so simple.
“Mum, due to Henry I am not scared any more of being an adult. I have decided that for the rest of my life I am never going to let my amazing dog down, so that he wil be proud of me, as I will always be of him.”
2% This would not be Henry’s final gift to my son, nor indeed to me and my daughter, Amy.
Amy was my millennium miracle baby, who had been diagnosed with moderate autism when she was only two years old. Thanks to Henry, both my children were reaching out to consider exciting futures. This is a story of our journey together into those futures.
However, to begin this new journey, as a family we had to get through the hardest day of all… the first day without Sir Henry. Six months before Henry’s passing, Dale had the foresight to acquire a puppy, and insisted on calling him… Henry!
We managed to live quite normally with two golden retrievers in our home with the same name. Dale knew the Wee would never replace Sir, but he needed to hold onto that name. And quite rightly, too!
3% I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!
Dale chose the most expensive outfit on the rail – the designer suit. After much deliberation his dad and I decided that no matter what we would support him in his pursuit of his profession. He was returning to a system which had helped him be the person he was today, and that was huge.
6% If only all the people to have involvement in Dale’s future would be as understanding and supportive of his achievements.
Amy’s quality of life and progress at school would have been very different, without her friends. Even in that very first year of school, that was apparent.
9% For those affected by autism, having a friend is every bit as important as it is to anyone else, yet it is possible the most complex challenge of all. Friendship, after all, imparts social belonging and is inclusive in a real meaningful way.
Both my children have often told me that they hated the isolation when they couldn’t engage or integrate socially.
Both have told me that in an attempt to cope, they would withdraw more into their autistic world, immersing themselves further into their obsessions as a substitute for company.
I never underestimate the need of anyone, anywhere on the spectrum for friendship. One child with Asperger’s asked his parents if there was a shop called ‘Friends Are Us’ where they could take him to buy a friend. How much we neuro-typicals take for granted!
A recent report by the National Autistic Society revealed that over 40% of children with autism have no friends. Unsurprisingly, these socially vulnerable children and adults make easy targets for bullying. Many children cannot survive in ‘mainstream’ classrooms for this reason.
Amy was one of the lucky ones. Her teachers knew how to work with her autism in a positive way. Small but constructive adjustments made a huge difference. The award of a horse sticker instead of a star, being allowed to draw horses in her busy book on completion of classwork or work well done, all these little things added up.
Dale’s educational motivators has been trains and dogs.
Both children had sensory integration issues. Practitioners now understand how sensory stimulus can overload an environment. Sensory issues alone can have a direct affect on the person’s ability to cope with situations, and it can completely undermine their receptiveness to learning.
Consider the sensory stimulus in a classroom: the glare of strip lights, the wall displays of paintings and projects, all the colors and endless information. Think of the sounds and smells of the seats and desks! No wonder they become overwhelmed. Add people into the mix.
Even to this day Amy still struggles, particularly with food, let alone with the environment in which she is eating. For example, one day not too long ago, as I was crunching away at my cereal, she said, “Nuala, eat your breakfast in another room. The noise hurts my ears and the look and smell of it makes me feel sick.”
< My Thoughts > “The noise hurts my ears and the look and smell of it makes me feel sick.”
Retrieved from: https://www.sensory-processing-disorder.com/sensory-defensiveness.html
Sensory Processing Disorder – also known as Sensory Integration Dysfunction is still in the process of becoming widely accepted and treated by all professionals. Even though the theories have been around for almost four decades, much still needs to be done before children who are behaviorally and emotionally imprisoned by their perception and interpretation of sensory input.
Auditory Defensiveness – Over sensitivity to certain sounds, or frequencies. They may cover their ears or make sounds in an attempt to block out the offensive noises.
Olfactory Defensiveness – Certain smells may make a child agitated. The child may turn away, leave the room or even throw up if becoming overly nauseous.
Our Sonny comforts himself by making noises, pushing music buttons on his board books, or by throwing things around the room when really agitated and sensory defensive.
10% Dale’s ten-year affair with Thomas the Tank Engine wasn’t as intense as how six-year-old Amy was able to manipulate anything and everything to bring horses into the equation; especially in her primary years. With Amy’s autism her obsession with horses was even fiercer than any of Dale’s childhood obsessions.
As every mum knows, the beginning of school is a time of scraped knees, bugs and illnesses. Amy certainly had her fair share of all that. One week she was unsettled and unhappy, repeatedly telling me that she had a sore eye.
She insisted that her eyes were really painful. I drew on her obsession. “Amy, how sore is you eye? Is it a walk, trot, canter or gallop sore?” “Nuala! It’s galloping sore!” now I knew that she was in real pain. With Dale I had been able to use the colors and numbers of the Thomas trains to express his pain and anxiety levels.
It is essential that mechanisms are put in place to allow a child to communicate and express their negative feelings or needs. Failing to do this is disastrous. Otherwise, what are children with autism to do? Their pain confuses them. How dangerous when they are unable to express what is wrong.
11% With Amy settled into school, it was time to focus on Dale. We were determined to help him access college. When he qualified, he would have the same rights to employment as any others of his generation. But to get there, Dale had many more hurdles to overcome than most.
Firstly, he had to cope with and integrate into a big college environment. I must stress that he needed the many specialized skills of a variety of integrated services. In those fifteen years since his diagnosis I had come across a very extreme range of professional abilities and aptitudes.
Dale needed to demonstrate that vital in-depth knowledge that he needed. A local transitional social worker helped with that. She ensured that Dale received the support he needed to transfer from school to college.
Her input was life-changing. With benefits in place and with Joyce’s support and Dale had a decent income for college. Her next task was to help him get a travel card for subsidized public transport use. This would allow him greater freedom, without worries about costs.
12% The Scottish Society for Autism and related organizations launched the Autism Alert Card. Each individual’s card is registered with the resource center and endorsed by the police. If Dale found himself in a potentially precarious situation, or in the event of police involvement, he could present his card.
As his parents we never subsidized Dale at all. He bought all his own clothes, DVDs and CDs. He paid for Henry’s food and insurance. He learned the value of money as well as how to manage it responsibly and quickly. He became adept at finding the best deals. Often, he’d comment on prices.
Some transitions are so simple – painting a classroom another color, a changed room layout, new furniture, a different teacher. Major transitions like leaving the familiar secondary school to the navigation of a big, college environment had to be addressed and planned months ahead.
13% Many high on the spectrum are very intelligent and well educated. Dale and his peers are meticulous regarding routine, rules and accuracy. Generally they are reliable, hardworking, with the potential to excel in professions like accountancy, engineering and computer sciences. Others like repetitive tasks, both basic and complex, and so are capable of succeeding in areas like IT and administration. There is evidence that people with ASD are often motivated workers, thriving in structured, well-organized workplaces. They have great attendance records, potentially lower staff turnover rates. Adults like Dale have the capacity for lengthy, undistracted task focus, following policy to the letter.
Dale has never been late for work – actually, he’s always early! Merely being on time would induce too much anxiety, so just starting on time for him means… being late. This group could never wrongly phone in sick or take a day off. The pressure of lying would be overwhelming. Imagine a workforce with all these personal and business qualities! How many millions might that save employers and our economy?
Yet, only 15 per cent of UK adults with autism are in full-time employment and only 13 per cent in permanent employment in Scotland. The NAS has revealed that 51 per cent of the UK group has been unemployed without accessing state benefits. (National Autistic Society of the United Kingdom www.autism.org.uk)
14% Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practicing in a local community recording studio.
16% When Dale’s severe autism was recognized in 1992, I wanted desperately to try to make a difference to the cause and to help other parents in my situation. I had always been heavily involved in support groups, awareness campaigns for the NAS and for Scottish Autism. It was all a great experience but my efforts never seemed to reach the masses or achieve as much as I would have liked.
The work and commitment involved was overwhelming. Nevertheless, it was always worth it. Dale and Henry’s story broke in 1995, when I won a short story writing competition. I could never have dreamed how it would change all of our lives forever – and not just ours, but the lives of thousands of others affected by autism.
At the time there was vast media interest in Dale’s story, eventually leading to one of the best projects I would ever participate in, on which would raise autism awareness to 6.5 million people in the UK mainstream alone.
17% At the time when the story went public, Dale’s best friend Scott commented, “Nuala, Dale was a nightmare when he was a wee boy!” I know he used much stronger words to Dale, personally!
Dale’s friends were really proud of him and impressed by all that he had achieved. Dale understood that a major part of his success was down to these superb boys being his friends in the first place. We owe them that, forever.
24% It was such an exciting autumn for all of us. From my perspective, the positive book reviews continued and I received letters, both heart-wrenching and uplifting, from parents and professionals. But things between my husband Jamie and me grew increasingly frustrating.
Dale’s story had touched these people, and how, in turn, their tales were touching me. A regular feature of the mailbag was correspondence from parents seeking advice on how to find and use a dog to help reach their own child. I advised them as best I could. Curiously, I have never really considered the strategies I’d used with Henry and Dale. I just did it!
That October, I became aware of a real need for some kind of dog-autism program. As I wondered how to devise something suitable, I received an email from a friend who had stumbled across the Autism Assistance Dogs (AAD), run by Irish Guide Dogs for the Blind (IGDB) in Cork.
This charity was placing purpose-trained, mature dogs with families of children with severe autism throughout Ireland. I was intrigued, and checked their website.
What I was to discover hooked me. I phoned Neil Ashworth, their autism assistance dog training manager.
As fate would have it, Neil had read my book and he was planning to contact me!
We both wanted to develop ideas, with Dale’s guidance, knowing we had an advantage: he could explain exactly why Henry worked! His recollections, both good and bad were vivid.
The temperament of any working dog has to be exceptional, and autism dogs were trained, specifically, to cope calmly with the difficult home environments and extreme behaviors that accompany a child with severe autism.
Amongst his many duties, the dog has to keep the child safe outdoors and in public places with their parents; he must assist at busy road crossings – many children with autism have bolting behaviors and no sense of danger. They may throw themselves to the ground, and more, much more – just as Dale had done.
27% Meanwhile, I started to worry about Dale as he set off for college, his eyes dark and sunken, blinking furiously. He could barely talk for stammering. He had started to tic.
Like many with autism, Dale has periodic autistic tics similar to the involuntary muscle movements suffered by a person with Tourette’s Syndrome. On the rare occasion it happened, it was a serious sign he was in autism crisis.
< My Thoughts > “…Tourette’s Syndrome.”
Retrieved from: www.cedars-sinai.edu
Tourette syndrome is a neurological disorder that causes people to make unintended sounds, words and body movements, called tics. These tics may last from several seconds to minutes, and have no meaning to that person.. Most people have their own unique type or pattern of tics. Severe episodes can interfere with the person’s daily lives.
28% “Mum, I’m really sorry to let you all down, but I can’t take it anymore. I want to leave college. Mum, I’m beat! Please help me get out of there.”
“Dale, go to Glynhill – just to get your progress reports. I guarantee, you will not be going back to college or Glynhill until we meet with your trainer to sort this mess out!”
What on earth was going on? A trainer who didn’t understand her job? A trainer who didn’t understand autism?
What we found out was that they thought Dale was not working at a satisfactory level. “Dale needs an awful lot of support and direction. He needs extra time if he’s to achieve his goals.”
< My Thoughts > “Dale needs an awful lot of support and direction.”
Bowler, et al. (2015) tells us that the difference between ‘supported’ and ‘unsupported’ tasks is revealed in this study. Participants found that seeing things in a specific order as with an organizational chart or by being given auditory cues helped them become more effective. Having support improved recognition of the order of events.
They went on to say that those with autism have different degrees of difficulties with memory and need to be cued to recall or recognize steps in a task or function. In the ‘discussion’ of the results, it was suggested that future support should be a result of spending time understanding and unpacking the complexity of the task. That it is necessary to recognize that those with autism need support to a greater extent than the typical person learning a new task or operation. One suggestion was that the designers of supported environments and educational settings compartmentalize and label tasks or operations into blocks labeled Block A, Block B, etc.
28% Thud! Dale was entitled to extra time and human support. Support that apparently had never been implemented. Suddenly I became focused, my anger found its direction.
30% “Dale, if we can improve things for you at college and on placement (where he was working in the nursery with autistic children) would you still want to leave?”
“Mum, I like working with the children. I won’t give up, but I feel I can’t go back to college ever again.”
“Oh, son, I was in awe of you then. I still am.” Finally, he relaxed knowing we were going to fight for his right to be treated fairly and have the same chances as any other student! For the first time in weeks, he slept.
We had fought similar battles for Dale in the past and won, but this one was to be our ultimate crusade. Facing another war, we would need new armor, fresh defenses.
Dale had endured the torment of bullying at school, like over 40% of autistic children. Now this!
31% It wasn’t Dale’s failure, but the college’s failure: “To make reasonable adjustments for Dale. He should not be treated less favorably because he has a disability.”
For what seemed the hundredth time in a lifetime of composing fighting letters, we were once again taking days to perfect that all-important letter for Dale’s future.
Parenting a child or adult with autism is a sufficiently demanding task, but ask any of those parents to try to count the desperate hours spent on computers, researching and learning about their children’s rights, the days and nights sweating over letters, possibilities, impossibilities, hopes – well, ask them! There’s no way any of us can quantify that.
I spent ages on the phone to the Equality and Disability Rights Commission for guidance on what to include in our letter. However raw our feelings, it had to be the most professional letter possible.
“To make reasonable adjustments, [Dale] should not be treated less favorably because he has a disability.” We quoted this from his college’s Disability Equality Duty 2005.”
The first apology we received was lost on us. “We didn’t think anyone would have taken the job.” All the director’s energies were directed at defending his staff. A few days later, we received a letter confirming an action plan, which would allow Dale to complete his course. Dale would have access to the College Supported Learning Department… to ensure inclusion and to help him access the syllabus.
< My Thoughts > “To make reasonable adjustments…”
Wentz, et al. (2012) explored the idea of using technology to help support adolescents and young adults with ADHD and autism disorders, in employment and educational settings. The idea was based on the concept that it would be easier to get additional support from a coach in an online ‘Chat Room’ setting which could be accessed during the day between the hours of 2 – 4pm.
Because the traditional ‘face-to-face; communication is difficult for most individuals, a computer-mediated communication from one’s home was thought to be an easier facilitation of support. The coaches available during this time period were either clinical psychologists or educational therapists with the common denominator of having vast experience with this population.
The participants could also fill out a survey to help them more clearly define the problem they needed help with. For instance, they could answer ‘yes’ or ‘no’ or rate the problem from a high 10 to a low 1. Some of the choices were. “Did you know enough today to help you with your difficulties?” “Did you feel prepared today?” “Does your coach recognize and respond to you when you are having a problem?” “How did you feel today when demands were being put upon you?”
Some of the problems with this form of support were voiced from the participants, such as – Don’t always have access to the computer during the timeframe of 2-4pm. Others said that no significant improvement in ‘quality of life’ was achieved for several weeks (not immediate enough). There were those who wished they could talk to the same ‘coach’ instead of possibly getting a different one each time.
Several said that they didn’t know enough about their ‘difficulty’ to express themselves clearly to the coach; that the questionnaire didn’t provide a way to identify the problem to their satisfaction. At the end of the program though, most felt they had greater self-esteem because of the chat room experience.
32% This was not a luxury but a right. Dale’s adjustments required a support person qualified to work with him. He would be allowed two submissions of assessed work, as well as other support. He was also allowed a new placement.
Feeling much better, Dale ventured into his new placement, autistic tics gone. He was sleeping and eating well and looked so much better. The relief for all of us was immense. Our hopes resurfaced.
A few days later, an upbeat Dale casually mentioned a strange quirk of fate. His trainer, from fifteen years ago was newly qualified to work at the nursery. She could see how far he had come. 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.
Dale was nominated for the college’s Adult Learner of the Year Award and again we had hope for his future. He wasn’t going to be defeated – autism or no autism!
Dale thrived under the new plan, plus some unanticipated “additional support”. Within five minutes of Dale getting up in the morning and beginning his study routine on the computer… 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. 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. Their deep restful breathing had a calming influence which helped Dale work longer.
Meanwhile, I was bursting with inspiration, and so began to develop transitional resources for an educational program, 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 programs could make the dogs far more beneficial and functional.
< My Thoughts > “Suitable training programs could make the dogs far more beneficial and functional.”
Assistance dog programs…Before we retired, my husband and I trained service dogs for children with disabilities. In our program we spent a year obedience training the puppies first. That way, in an emergency situation the dog when ‘off lead’ can be commanded to – Stop, come, sit/stay, down, wait, back-up, heel, etc. After the dog was well trained for obedience, we trained for the child’s special needs.
As with most programs, we had a waiting list, a vetting procedure, and certain protocol that needed to be followed by the families of the recipients. If you are interested in getting a dog, do your homework and find the organization that is the best fit for you, and with whom you have the best chances of getting a dog. Understand that the beginning cost to the family will be between $10 -15,000. Know that there are sometimes waiting lists for two or more years, plus you may not be accepted or approved for placement.
Some of the other things to consider are that you will be ask to show that you can provide for the care, feeding, grooming and any veterinarian bills which may become necessary.
In the United States, the federal law Americans with Disabilities Act (ADA) provides ‘guidance’ for allowing assistance dogs in places of business; each state has its own guidelines. There are other regulations that may prevent service dogs from entering businesses. For instance, sterile places such as hospitals, clinics and doctor’s offices. Public and private schools have their own way of handling this situation. If the school does allow the dog, who takes charge of the dog if the child has an event where s/he is removed from the premises, as in a seizure where the student is transported off campus?
For our program, candidates were interviewed several times and we made home visits to assess the appropriateness of the setting the dog would be living in. We also had a strict ‘follow-up’ procedure where we made ‘surprise’ visits to the home to evaluate how the placement was succeeding. There have been cases where we found the dog chained-up in the backyard, or sharing space with other family dogs; instead of staying by the side of the child it was intended to serve and protect. Just saying.
32% Preparing my son for Henry’s arrival meant that on some level, Dale had to understand that Henry was a fellow being. His dog, like him, had emotions and needs; he was no cuddly toy!
33% My program had to recognize 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!
34% Jim Taylor of Scottish Autism stressed that it is 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.
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 phase should take two to three months and in keeping with the literal learning pattern, social stories and pictures needed to be realistic; games, books, DVDs, and CDs like ‘Who Let the Dog Out’, in order to make that needed connection.
34% My program would have to address individual needs, with appropriate short-and-long-term educational objectives. Ultimately, it sought the greatest possible independence for each child.
I ensured that there was the opportunity for all sorts of progression without unnecessary and intrusive change; as the child grows. For instance how the child holds the lead, half-lead, or handle attached to the dog’s harness.
35% My program gave the dog free run of the house. Guide and assistance dogs are trained with strict boundaries, but 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.
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 weeks passed, a four-stage program emerged which would take the child through life transitions until the dog’s demise.
44% With the summer ahead and my program in good shape, I just needed to find a family! Okay, I needed funding to really make things complete, but despite that things were taking shape. I wished someone had funded me, but it didn’t stop me. This was the dog on my shoulder and it wasn’t going away!
46% Working with my first family, it was thrilling to see another child learn through a dog as Dale had, seventeen years earlier. Communication works.
Without verbal or social pressure, we witnessed how children with autism are able to understand and begin to verbalize using a dog because of the consistent, non-threatening sharing the animal allows. The dog enables the child to engage and interact without the human’s social baggage. There are no complex facial expressions or language to bombard and intimidate.
I was beginning to recognize the piece of the jigsaw I had sensed was missing since Dale’s childhood. What was the dog doing right that we neuro-typicals were not?
48% As the saying goes, you wait for a bus then three arrive at once, and so it was with parents.
< My Thoughts > About having a Service Dog…
I’ve told you about our personal experiences involving a dog program, now this is some of what is out there in the literature. Stevenson, et al. (2015) found that having a service dog “encouraged and motivated children towards social interaction and away from preferred sensory or solitary activities.” That having a service dog furthered a naturalistic means to engage students with autism in their educational environment. “When a child is with the dog, he established his own world…”. Other merits they felt were the potential and importance of the non-judgmental quality of the dogs when the child had emotional or behavioral difficulties.
They also saw that children could ‘generalize’ what was being done with the dog to what they themselves did; that more ‘spontaneous’ learning took place. That was one of the reasons that Nuala was so successful with because she saw how Dale could learn from his connection with the dog.
I would just like to say this about that… my husband and I have seen many unexpected benefits from having a service dog in the home. Just one of many was that Sonny never looked to see where he was walking. He just ambled through the house stumbling in his uneven gait – before there was a dog sharing his space. Now he seems more aware of where his feet are going, so as not to step on the dog. But, as far as being approved to have a service dog accompany him to school, that was a ‘no go’. Yes, you can fight the system and draw even more attention to a child’s situation. We made a personal choice not to do that.
Butterly, et al. (2013) interviewed “five providers who prepared dogs to work with a wide range of conditions and behaviors, mainly Asperger’s syndrome, autism and communication disorders. The majority felt that after placement of the service dog the recipient had improved attention span, communication skills, and increased familial cohesion.” They established that “the parent was to be the primary handler of the dog, to maintain the training of the dog and to ensure the safety and wellbeing of both the dog and the child.” They also found in their inquiry that recipients “tended to overestimate the gains” expected from the dog placement. But they also said that there were unexpected gains in the reduced anxiety, increased empathy, and increased activities as a family.
61% While his driving had improved, Dale struggle to pass the theory test. Having failed two attempts. The test was multiple choice. I’ve been driving for more years than I prepared to say and I found the choices quite confusing. I felt the frustration Dale had, besides he had a condition called dyslexia. (Dyslexia is a neurological learning disorder where it is difficult to recognize speech sounds as they relate to reading and writing words.) I phoned the person who supervised the test, highlighting Dale’s difficulties. She agreed that the test format was far from ideal for candidates like Dale, but unfortunately it was the only one available.
< My Thoughts > “Passing the driving test…”
According to Brooks, et al. (2016), Young adults with Autism Spectrum Disorder (ASD) usually have certain symptoms which complicate their ability to master independent driving skills. Symptoms listed were – epilepsy, hyperactivity, aggression, anxiety and/or erratic sleep patterns. The study also indicated that young people diagnosed with ASD had difficulty with driving-related skills such as visual motor integration, motor coordination, speed regulation, lane maintenance and signaling.
They suggested introducing ‘pre-driving’ skills to increase ability with steering while operating foot pedals, use of both hands, eye-hand coordination and increased range of motion; with the ankle, knee flexation, and head turning. Other ‘interactive exercises’ like managing the dashboard side-by-side displays, upper body steering tasks while managing lower body pedal functions. They indicated that all things increasing attention and motivation, cognitive demands and dealing with sensory overload and anxiety. Video games were also considered to be helpful, especially ‘chase’ games.
I don’t think that I have to worry about Sonny driving anytime soon. His medication clearly states ‘Do not operate machinery and his ‘Sippy’ cup won’t fit in the cupholder. Smiles.
62% Finally the time came when Dale felt he was ready to that his third attempt at his driving theory test. On the big day, he set off feeling more confident, agreeing he would phone me only if he passed. An hour later the phone rang. “Mum, I passed! Did it by a ba’ hair, but I don’t care, as long as I passed.” Hearing this Amy ran to make Dale a congratulations card, complete with a blue sports car.
65% November was a depressingly dreary month, and not just because of the climate. Now that he had passed his theory exam, Dale’s driving instructor advised him that he was ready to sit the practical test. On the day of his test, the weather was horrendous, all torrential rain and winds.
Dale was coming up the stairs. I continued to drink my tea, determined to keep things low-key as he loped into the lounge. “Mum, have you seen the weather? It’s mad out there.” Then came the bombshell.. “Mum, I passed!”
I ran up to him, I was just so thrilled that something had gone right at last for him, against all the odds. He still wasn’t in permanent employment and the chances of him being able to afford a car were non-existent. I knew he felt that too.
< My Thoughts > “Mum, I passed!” …I was just so thrilled!
Cox, et al. (2012) explain how parents’ experiences regarding their young adults with ASD who were attempting to learn to drive effected them. Parents worried about driving demands, multi-tasking and the fear that not achieving driving skills would severely limit their child’s independence and lifestyle.
Parents were also concerned about their child’s ability to generalize (transfer learned skills to a new situation) from the learning setting to actually driving and felt they must require specialized training in order to learn to drive safely. That they needed to know how to deal with the substantial challenges of managing ambiguous situations, of anticipating moves by other drivers, and of dealing with weather and roadway conditions.
Yet another article cited all the above, plus concerns about ‘social processing’ such as “sharing the road” and taking longer to process what they are seeing and how to respond to it. Also mentioned was the chance that drivers with ASD may not respond appropriately when and if the driver is not visible in the vehicle, like a bus or if a driver is behind darkened windows. Hmmm…
66% “Dale, here’s the car keys. Go and get Amy from school” “Are you sure, Mum?” “Yes, you’re legally allowed to drive. I’ve put you on the insurance. There’s no time like the present to get going!” Off he went. I loved watching him driving away. His new freedom was wonderful for both of us. He especially liked driving the boys to Battery Park.
November 2010 brought some of the coldest days any of us could remember.
74% (At this point in my life.) There was so much loss. My marriage, my nursing career, and now this. Sure, there was the canine education program, but none of that was secure, it was only in its infancy. I had no money, no dogs – no nothing to advance my ideas! No nothing! I was at my lowest ebb.
75% Then there was a phone call.. “It’s Alberto, calling from Spain.” It had been four years since I had seen Alberto. Refreshingly, he had lost none of his enthusiasm. He brought good news. His friend Beni wanted to translate my book into Spanish. Marvelous! That wasn’t all.
“Nuala, we have placed a few dogs with severely non-verbal autistic children, and it has gone well.” “There have been some problems – but not with the dogs!”
I felt alive again. My hopes soared! Our program, where children chose their “own” colored dog lead, would be unique I was inspired!
< My Thoughts > “Our program, where children chose their “own” colored dog lead…”
Retrieved from Nuala’s website –http://nualagardnerautism.com/
“The program is based on my own research and experiences from both my books. Reading both books isn’t compulsory, but strongly recommend for those interested in using a dog to help a child or adult with autism or disabilities. My program addresses individual needs, with appropriate short and long term educational objectives. Resources I’ve developed are basic and help siblings to be involved.”
“I’ve ensured there’s opportunity for progression without unnecessary and intrusive change. Naturally, I use the child’s obsession which increases the child’s bonding with the dog. As I created the program, I have adhered to… JimTaylorknowsautism.com… advice … to keep things real!”
“With Dale, weeks before Henry the puppy arrived, I used a little soft yellow Labrador toy, in tandem with real equipment. We brushed and fed the toy, sang dog songs daily, as if the toy was real. From this I’ve included in the program what I now call, “The Cuddly Pack.” This was developed with the help of another unique autistic mind my daughter Amy!”
“I’ve been able to tap into both my children’s autistic minds to ensure I’ve got the resources and my approach using the dog as an educational facilitator… right! The potential for fun, imaginative and educational play is clear and long-lasting. The manual guides the “user” through a… four stage program that takes the child or adult through life transitions until the dog’s demise. I’ve adopted the traffic light system which 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 education and best independence possible using the dog as a facilitator.” “For later, hopefully much later, the Blue Stage. The child learns the dog is old, is taught the concept of Heaven through an adapted children’s story book about a dog, and learns to let their pet… go!”
“Interested parties who buy the manual can access my service to support them through the program, as a mentor or on a one to one basis. The manual can be purchased and posted through this website.”
80% My career path – if that’s the right term for it – was progressing. So far there wasn’t exactly money and a pension plan in it, but whatever it was growing into was fitting me very well indeed. I felt purposeful. I just kept hoping that all the trappings would follow…
==============
< My Thoughts > How Nuala, Dale, Amy and Jaime are doing now…
From Nuala’s website on February 18, 2016 –
Learn how to use my program… go to my website http://nualagardnerautism.com/
I will be offering consultation and workshops on the use of the program I have developed that can help make a huge difference if you have a son or daughter with autism.
As promised by Alberto I worked directly with him for three weeks with Guidedogs Queensland pilot for Autism Assistance dogs. Apart from seeing the Gold Coast I worked with four families where the dog would service two affected children. It was wonderful and memorable with experience for life!
I'm really pleased to promote Dale's band's new single and music video, which I feel is excellent, although i'm naturally biased. Dale is the bass player wearing the flat cap. This video is proof how far he has come and how superb a quality of life he now enjoys. For parents I wish this gives them much hope, for their own children future! https://www.youtube.com/watch?v=Jb5DuNjbHXY
End of Excerpts from book with < My Thoughts > by Sara Luker
Note: Nuala's 1st book is on Menu... A Friend Like Henry
=====================
Resources used in < My Thoughts > are:
Bowler, D., Galgg, S., Gardiner, J. (2015). Brief Report: The Role of Task Support in the Spatial and Temporal Source Memory of Adults with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V45, p.2613 - 2317.
Brooks, J., Kellett, J., Seeanner, J., Jenkins, C., Buchanan, C., Kinsman, A., Kelly, D., Pierce, S. (2016). Training the Motor Aspects of Pre-driving Skills of Young Adults with and without Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.2408 – 2426.
Butterly, F., Percy, C., Ward, G. (2013). Brief Report: Do Service Dog Providers Placing Dogs with Children with Developmental Disabilities Use Outcome Measures and, if so, What Are They?; Journal of Autism Developmental Disorders; V43, p.2720 – 2725.
Cox, N., Reeve, R., Cox, S., Cox, D. (2012). Brief Report: Driving and Young Adults with ASD: Parents’ Experiences. Journal of Autism Developmental Disorders; V42, p.2257 – 2262.
Stevenson, K., Jarred, S., Hinchcliffe, V., Roberts, K. (2015). Can a Dog Be Used As a Motivator to Develop Social Interaction & Engagement with Teachers for Students with Autism?; Support for Learning; V30, p.341- 362.
Wentz, E., Nyden, A., Krevers, B. (2012). Development of an Internet-based Support and Coaching Model for Adolescents and Young Adults with ADHD and ASD; a pilot study; Journal of Early Child & Adolescent Psychiatry; V:21, p611-622.
=====================
