I didn’t tell him, but later in the week I was desperate to hear from the “horse’s mouth” how he had got on! I called Gillian, and I was pleased that I did. She had a good tale to tell. During the camp, a popular big Clydesdale horse, who was universally adored by the children, took ill with severe colic. The vet was called. The children were so worried, and Dale encouraged them to colour in pictures from his resources. They decorated the sick animal’s stable with them, to help it get better.
I had a story to share too. A mother of a six-year-old on the spectrum who had been to the camp emailed me through Facebook. She explained, “Dale was a marvellous help to us and our son.” She had been telling Gillian about a book she was reading. Unbeknown to her, it was my book. Then Gillian told her she had, in fact, already met Dale. Hearing this she was totally blown away! “No! That can’t be Dale! I hadn’t realised he had autism.” As her tears welled up, she wrote how she had found him such a fine young man, and the experience had truly touched her. She felt inspired “even more in our quest to help our son reach his full potential”.
The holiday period over, Dale entered the scenario he had worked for five years trying to avoid. He retreated to his room, with only his laptop and the boys to fill his day. His monotony was interrupted with just the weekly degradation of signing on. Walking the boys around our estate was as good as it got. For the sake of his sanity and to keep his skills sharp, he continued to volunteer at Barnardo’s drama group. Life was pretty stagnant for both of us. There was one interesting glimmer: 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. When I heard his voice, I expected happy news but didn’t expect his particularly nuanced delivery.
“Mum, I passed! Did it by a ba’ hair, but I don’t care, as long as I passed.”
Well, I was delighted, of course! Whilst the terminology might not have been my own, it certainly was his, and the kind of bantering tones he and his friends used. Not for the faint-hearted! Hearing this, Amy ran into the computer room. In a nanosecond she returned with an A4 bespoke congratulations card for Dale, complete with blue sports car, adorned with “L” and “P” signs, and the message: “Well, done! You have passed your driving test theory.”
I thought to myself, Well done to you, too, Amy. Little Miss Bill Gates in the making!
Mostly, however, there was more of the duff stuff than thrills to be had. Some days, to break the boredom, we went out for lunch, or drove to the beach at Lunderston Bay. The boys could get a dip and a long walk, which helped us all. Around this time, Beth contacted me to ask if I would meet Keir’s additional support needs assistant (ASNA), Blair Cochrane. Blair had read my book and wanted my thoughts on a project he was developing, called DATA (Dog Agility Therapy Autism).{2} Blair knew Keir and Ellie well, and wanted to explore if he could help improve Keir’s quality of life, working with him and his dog. Again young Keir was to be a guinea pig, and if the results were good, it would be rolled out for others.
I was aware of YouTube footage of a teenage boy with Asperger’s whose life was transformed by a service dog.{3} The story was being reported because a whole new social world had been opened for him when he participated with his pet in dog agility. I understood the therapeutic benefit dog agility could have for an older child on the higher end of the spectrum, but Blair wanted to do so much more. If he could help severely affected younger children access dog agility, it would take them into a world that I believe had never been entered before.
After we talked on the phone, I couldn’t wait to meet him. His knowledge of autism was on a par with my own. Blair had the added experience of being an expert dog trainer. He was so successful that he’d even competed in dog agility at Crufts. We met soon afterwards and talked for ages. Just as it had been earlier with Alberto and Jane, we knew immediately that we were on the same page with our thoughts. Blair understood that transitional care was paramount, and though his resources to help the child connect with DATA were different from the ones I had used, they were equally appropriate to the task in hand. We discussed ideas over lunch, but truthfully, Blair just needed me as a second opinion. Undoubtedly, he was on the right track with his project. This was revolutionary stuff! He was hoping to create a therapeutic programme, which would reduce the sensory chaos children with ASD experience. As luck would have it, the new agility equipment he had ordered was bright green! It was meant to be. Keir was to have a really positive start.
Before he left us, Blair gave Amy an invitation, one I imagined would be mission impossible. “Amy would you like to try DATA with Thomas?”
“Yes, please, then he will be my DATA dog.”
While I was pleased for Amy and Blair, I was sceptical. Let’s face it: when did that Thomas ever do anything sensible? Nonetheless, I knew that it pays to have an open mind, and I have never been scared to take a risk. If the worst really came to the worst, what harm could it do? I couldn’t wait to find out, and so I began preparatory work with Amy. She watched dog agility clips on YouTube, and Blair’s resources helped her to learn names for the equipment – the A-frame, the seesaw, jumps and weaving poles.
A few weeks later, on a bitterly cold day, we arrived at Blair’s with an embarrassingly tubby Thomas in tow. I confessed. The bold boy had managed a couple of successful forays and had gorged himself on chocolate and biscuits, left out by yours truly by accident. Down to business! I was the camerawoman, and at Blair’s command, I stood back to let him take control. That, I must admit, felt odd!
With Thomas on a normal lead, Amy said, “Thomas, this is your dog park. It’s time to play.”
Immediately, Thomas sussed that she was in charge. If he did something right, he was rewarded with a tiny treat. That made his day. He managed a few little jumps, and then it was time for the big A-frame. With a bit of a heave-ho to Thomas’s ample back end from Blair, within minutes he had tackled and completed it. I was astounded, and he must have been just as delighted – that tail wag was in overdrive! What a thrill for Amy. She quickly picked up how to change her tone of voice and place herself correctly to help him complete the course. What a blisteringly brilliant first sessional round! Amy was hooked. On the way home, she confirmed that, as only she could. “Nuala, when I take Thomas to do agility at Crufts, I will need to give him a bath first!”
There was so much more to come from DATA, and it seems right to hand over this part of the story to Blair to tell in his own words:
Blair: The thought of combining what I knew about dogs and autism had been going through my head for some time. There were so many situations I wanted to explore, so much learning potential untapped. I had no doubt. I had known Beth and Keir for some time. After a chance conversation with her about the possibility of starting to teach Keir and Ellie the basics of agility, I was introduced to Nuala. Beth lent me the book, and I admit that I raced through it in a couple of days. It whetted my appetite to meet this woman! She had had such a successful time with a dog, and I understood that completely; my own dogs are my constant companions. After meeting Nuala, DATA (Dog Agility Therapy Autism) was born.
As this was a completely new venture for me, I decided to start at a very basic level with Keir. Firstly, I introduced him to line drawings of a dog similar to his own. The images showed her in the “sit”, “down” and “stand” positions. This was to allow Keir to colour the drawings whilst, simultaneously, I subtly reinforced the command by repeating the name of the posture. After six weeks of this learning, I decided that I should introduce Keir and Ellie to the equipment. I have to be honest; this part of the process did not go very well initially, as Keir thought the equipment was for his own use! He proceeded to run along the dog walk and climb on the seesaw. Needless to say, this was gently but firmly discouraged. Once he had settled, I used a jump, with the pole positioned on the floor, to introduce a very basic cause and effect lesson. When Keir said, “Over,” Ellie duly went over the pole. We
used the same concept for a tunnel and also for the weave poles, positioned on a wide setting. Extremely quickly, Ellie picked up that if she did as she was told she would be rewarded with a snack. Funny that! As most people know, there are not too many things that Labrador Retrievers won’t do for food!
After a few weeks of doing jumps and tunnels, I decided that they would attempt the A-frame. This is a rather large piece of equipment; the dog has to climb from one side, right over the top and come down the other. It’s pretty steep and, indeed, seen from the side it does look like the letter A. Perhaps that sounds very straightforward, but it is quite a challenge for the novice. However, there are contact points on each side. Ellie was lifted onto the frame and allowed to walk down; the next time she was lifted further up until, bit by bit, she was managing the whole obstacle without any human intervention. I used that same process for the dog walk, which is a narrow plank with a ramped start and finish. This also has contact points at each end. Ellie took to this one extremely easily.
The next obstacle to teach was a seesaw. That’s a very difficult device for dogs, as it moves, so I thought it would be best if Keir helped Ellie onto this. He pushed the seesaw down whilst saying the command “Push” to help her. That was a huge challenge, but once again, we achieved it, just as I had planned.
Once I had taught all the pieces of equipment, it was time to start to put them together. That’s all very well in a straight line, but how do you get the handler and dog to turn? In this case I simply said, “Keir, left” and he turned to the left! This had to be a fluke! Not believing what had just happened, I tried again, saying, “Right!” and, lo and behold, he turned to the right with Ellie. Throughout all those many weeks of lessons I had been following Keir, but now I wanted to introduce greater independence. I purchased footstep shapes for him to follow and we started putting a small course together. This was working brilliantly until the bright Ellie sussed that I was the food carrier! She just would not go with Keir, knowing which pockets stored the treats. Back to the drawing board! I tried a ball and a short lead . . . and hey presto, off went Ellie with Keir to do the course without me. I cannot tell you how proud I felt.
If only all of life went with such beauty! In November, once more Dale and I had caved in to our grim routine. I desperately wanted my health to improve so I could plan for my future. Future? What the hell was that? My medication wasn’t hitting the spot. Even the increased dosage. I rattled. I wished I could stop digging that wee brown bottle out of the cupboard, or out my bag. I wished. I wished. Well, I could bloody well keep wishing. It wasn’t happening. Tomorrow. I’d find time to fix it tomorrow. Think about it. Think about me. Tomorrow. But in the meantime, I’d need that second pill. Tomorrow. I’d sort it.
In truth, all Dale needed was a job. Then, out of the blue, from Jobcentre Plus he was given just a little hope. A temporary vacancy of ten hours a week was available in an environment Dale had known forever, Highlanders School – the very place he had attended immediately post diagnosis! He was there until he was six years old.
No parent forgets the day that a professional informs them that their child has autism. Our own day was on Wednesday, 27 February 1991. Before meeting the educational psychologist in the school, I had been given that word, autism, from a friend in nursing. Still, I needed that formal diagnosis, and I believed I was prepared to receive it . . . I was so wrong! There I was, getting Dale ready in his new jumper I had chosen especially for the day, and yet, deep down I was praying it wasn’t autism. Could it just be something else, something less scary? We drove to the school, and Dale, for once, was passive. Jamie and I took a hand each, and led him through the big storm doors of that Victorian building. After the meeting, we passed those doors again. Oh, Dale! He was still the same child, still my gorgeous wee boy, but from that day, officially, I had a different child from the one I thought I had! I was heartbroken, but bloody determined.
Nineteen years later, here I was, driving him to Highlanders for his interview, and he was wearing his good suit for the umpteenth time. I wished him well, waited in the car, and watched him disappear through those same storm doors, keeping my memories to myself. I hoped that fate would be kind to him, but it delivered him yet another blow. Oh yes, he impressed the interview panel. However, they offered the post to a candidate with more experience.
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. As he set off, we stuck to our agreed phone rule. According to the television, there was already flooding in the west, and worsening storm conditions were imminent. It seemed likely that his test would be cancelled. I began tidying up to take my mind off the wind, the wet, and that test. A couple of hours later, I sat down with a cup of tea, and saw Dale coming up the stairs of the house. 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.”
I couldn’t disagree, and I reassured him that it was just as well his test had been called off. Then came the bombshell . . .
“Mum, I had to sit my test anyway and . . . I passed!”
I ran up to him, unsure whether to hug him or to hit him! I went for the hug, being just so thrilled that something had gone right at last for him, against all the odds. Delighted though I was, I was also frustrated, as he 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.
A couple of weeks later, as we lunched out, he shared his annoyance of not being able to get out and drive. I decided to overrule a decision Jamie had made earlier, on the basis that the insurance would be too high. Arriving home, I immediately phoned our car insurance broker and had Dale’s name added to our policy. He was chuffed to bits! It was expensive, especially at a time when our income was tight, but he deserved it. He offered to put petrol in the car, paying with his own money. With Dale mobile again, I got myself ready to collect Amy from school, when something interesting occurred to me: I now had a live-in chauffeur!
“Dale, here’s the car keys. Go and get Amy from school.”
“Are you sure, Mum?”
“Yes, you’re legally allowed to drive. There’s no time like the present to get going!”
Off he went. I loved watching him driving away. Okay, I admit that I twitched the curtains with a wee bit of apprehension, but where would my kids be today if I hadn’t been a risk taker? Thereafter Dale would drive anywhere, any time, whenever I asked; if I needed milk from the shop, or I wanted him to collect his Dad from work – whatever! The new freedom was wonderful for both of us. He especially liked driving the boys to Lunderston Bay, particularly without his mother around!
A few weeks later, he came home from a jaunt with the boys to Battery Park. Immediately, I knew something was wrong. Reluctantly, he explained that he had reversed too far when parking and had hit an iron drainpipe. He had broken an indicator light. He assured me that the pipe was unscathed and no other car was damaged, but he was too worried to tell his dad. As he hadn’t long had that full licence I didn’t want anything to lower his confidence. Without wanting to jinx anything, Dale’s driving ever since has been without incident. He’s a terrific driver. Some things you just have to do quietly.
Between us, we went to the garage and we stumped up, somehow. Maybe it wasn’t just for Dale’s sake that I didn’t tell Jamie the whole story that night. He was fine about it later, but I didn’t have the stomach for yet another battle. There were too many already. I was tired, so tired of it all. It wasn’t just him. It was both of us. I hated what we were becoming when we were together.
14
Enough Is Enough
November 2010 brought some of the coldest days any of us could remember. The weather was crazy, and it played havoc with our ro
utines. It was so bad that often we had to start for school early and work late. That took some explaining, to Amy in particular. Snow fell, and stayed, and with it came that cruel, sharp white light. Locking the door for just a moment of privacy, there it was, streaming into the bathroom and showing my face up in the mirror. Suffice to say, that light was taking no prisoners! I shook my head and wearily unscrewed the lid of the moisturiser.
“Nuala! Nuala!”
With two fingers, I scooped up what I can only call a dob of cream and began to rub.
“Nuala! Where’s my bag? I need it. Nuala!”
“Amy, ask your dad. I’ll be down in a minute.”
I rubbed quickly, and looked. It didn’t seem to be doing a lot, this not inexpensive cream. In fairness, how much time was I really spending on my appearance? The last five years in particular had been a rollercoaster – Amy, Dale, and then Jamie. There hadn’t been a lot of time for nourishing me.
“Nuala! Where’s my bag? Dad doesn’t know where it is. Nuala!”
“Mum!”
My forefinger moved the cream towards my eyes. Oh God, whose eyes were these? Not mine, surely!
“Mum! Can you come and check my folder? Mum?”
“Dale, I’m coming. Just give me a moment! Please!”
“Nuala!”
All Because of Henry Page 17