Back at home, our nightly routines differed in that we always attached the MR10 monitor before putting Amy down to sleep. While this seemed strange at first, the pediatrician was absolutely right—the reassuring click from the monitor as it picked up Amy’s chest movements allowed us to get some sleep ourselves. On one or two occasions, however, we were awoken in the middle of the night to loud screeches as the monitor went off like a smoke alarm. We would pounce out of bed only to find that the connection to Amy had merely dislodged. But for all this, it got us through a very frightening time in our lives. No matter what we had previously experienced with Dale’s autism, the death of my mum, fertility failure, and devastating miscarriages, the thought of actually losing Amy was the most unbearable of all.
We settled into our new routine, and friends and neighbors came to visit, kindly bearing gorgeous gifts. They were much taken by our daughter’s beauty, and so happy for us. One neighbor, Isobel, who lived across from us, had even hand-knitted beautiful coats for her, which meant so much to me as it was something that my mum would normally do.
Whenever people arrived to see Amy, Henry always assumed that they were there to visit him, so he always ensured he had a “present” for them, such as a rattle or a furry toy belonging to Amy. When Amy slept, Henry would adopt his position beside her crib or bouncy chair as if on guard, protecting the newest member of his pack. If Amy cried, however, Henry would get upset and go into the garden—he was sensitive when it came to the piercing noise of a baby’s cry, and it seemed to distress him almost as much as fireworks.
I remember one time when I was changing Amy’s diaper on the floor and Henry was sitting nearby, watching with interest as I wiped her clean. When I reached over for a fresh diaper, Amy’s tiny feet in my hand and her bottom in the air, Henry decided my efforts were below par and began a clean-up job of his own. I couldn’t help laughing as I gently discouraged his enthusiastic licking—although judging from the amount of water he then proceeded to drink from his bowl, I think he had learned his lesson!
Although Dale was still doing well, he found it very difficult to voice concerns to anyone and would bottle things up for months or even, it transpired, years. While he had in his way helped us to realize it was time to leave the unit at St. Anthony’s, one incident in particular convinced us of this.
St. Anthony’s was a Catholic school, and while we had told them from the start to teach Dale the basic morals of religion and of the school, we emphasized that we did not want him exposed to long, confusing Masses. This was not contentious because there was a very mixed group of children at the school and non-Catholics were allowed to opt out of Mass.
One night, however, as Jamie and I were getting Dale’s things ready for school the next day, Dale announced angrily, “I don’t want to go to Mass tomorrow.”
“That’s fine,” I told him, “you don’t go, anyway.”
“My teacher told me to stand in line and get ready for Mass,” came Dale’s furious response. “I told her back many times I wasn’t going, but she wouldn’t listen.” Then, as I tried to find out more, he blurted out in a rage, “I’m not like Kyle in South Park—I’m not a Jew.” What he meant was that he knew that we were not a religious family and so knew that he shouldn’t attend Mass. “It’s not fair,” he went on angrily. “John and Harry don’t go—they draw in class instead. So I went,” he finally concluded, “but with my arms crossed instead.” We couldn’t help but be impressed by this gesture of defiance and assertion.
It turned out that Dale had been going to Mass for the whole of the five years he had attended St. Anthony’s. While Jamie and I laughed at this revelation, more importantly Dale had been reminded the hard way of the true power of communication. With him at my side, I wrote a note to the teacher, appreciating that there had perhaps been a misunderstanding but asking that he be excused from Mass. Ironically, the incident did at least highlight to us that Dale was apparently ready to move on to Overton full-time. He had demonstrated a sense of independence by challenging his teacher.
We attended a meeting at Overton in late March 2000 at which Dale’s teachers from St. Anthony’s expressed concerns that he would be unable to cope if he left the unit for a permanent move to Overton. We explained that Dale appeared very happy at Overton and, more importantly, had voiced this himself; he was thoroughly enjoying becoming part of his class and school.
Anticipating that we would meet with a degree of opposition, prior to the meeting we had sought the help of the Scottish Society for Autism, and one of its field workers attended the meeting on our behalf. She supported us in our arguments, emphasizing that Dale was motivated to be at Overton and how important this would be in terms of maintaining his self-esteem.
The final decision was that Dale would go to Overton three days a week until Easter, with a view to moving to five days if all went well. True to form, with all his extracurricular activities and the support of Overton, Dale continued to thrive, and Jamie and I were over the moon when he moved to five days a week in June 2000.
Shortly afterwards, Dale confirmed not only that we had made the right decision, but also the extent of his awareness of being different: “Mum,” he said, “there’s a boy I see in Overton’s playground who needs my place at St. Anthony’s.”
For the rest of the term, there was a reassuring knock on the door from Fraser every morning, and the two of them headed off to school together. Finally, after so many years, Dale was like any other boy in the neighborhood. Jamie and I reveled in the normality of it all, though we will forever be grateful for what St. Anthony’s did for Dale.
While Dale continued to thrive at Overton, I relished my time with Amy. She was a different baby from Dale in every way in terms of her reactions and how she behaved with her toys, but I still wanted to enhance her development and found a way that would in fact benefit both of us. A community nursing colleague was running baby massage classes, so I took Amy along. She seemed to love the whole process, and we both enjoyed socializing with other babies and mums.
With all going so well, my only concern was Dale’s lack of interest in his sister. Jamie and I had tried to involve him in so many ways and persistently reassured him that we loved them both equally, but he had great difficulty appreciating Amy’s needs and how young she was. Often when we would try to guide him, he would shout, “She has to learn the same as me.” He had no understanding of just how long his own learning process had been or how very tiny his sister was.
I thought it would be a lengthy and difficult process to bridge this gap, but yet again a certain toy train came to the rescue. With Henry and Robert’s help, as well as the benefits of Dale’s new life at Overton, we had at last managed to wean him off Thomas. Nonetheless, the bond with Thomas would always be there, and I suggested to Jamie that we try using it to help Dale bond with Amy. The range of Thomas toys now available was endless, and so we bought a miniature tabletop activity center of Sodor, the island, with movable beads, trains, and Harold the Helicopter.
I told Dale that we had a new toy to teach babies how much fun Thomas was and how Thomas could help them grow up. Then I gestured toward the toy and slyly asked, “Dale, as you know Thomas best, could you show Amy how to play with this?”
As soon as the activity center was revealed in all its glory, Dale sat with Amy and started to show and tell her all about it. So began a true bonding process. In time, he would read Thomas and dog stories to his little sister and play with her and her toys, the love between them easy to see.
Now that Dale understood Amy a bit better, we thought he was ready to take another big step. Even before bringing Amy home from the hospital, we had reassured Dale that Henry was his dog alone. This had worked very well, and he was never jealous of any attention Henry paid Amy as he knew Henry was his dog. We now felt there was a way we could reinforce this to him.
As Dale’s friend Robert was used to retrievers and had a dog of his own, we introduced a system whereby with Robert in charge, he a
nd Dale would walk Henry around the neighborhood every Sunday before they had dinner together. The next step from there was that I took Dale out and prepared him to walk Henry on his own, ensuring he would always take the same circular route, have an emergency phone number in his pocket and follow strict safety rules. I also timed the walk so we would know when Dale and his dog were due back.
One afternoon, Dale had still not appeared some fifteen minutes after he should have been home; fortunately, he had stuck to the set route, and I found him talking to the other kids on the block. They were all fussing over Henry, who needless to say was not complaining. Dale feared he was in trouble, but I reassured him because I now at least knew that he understood the rules. From there, we were able to develop other, more varied walks.
Dale moved on to take responsibility for all aspects of Henry’s care, even to the extent of accompanying him to the vet’s, and took all of these duties in his stride. It may have taken all seven of Henry’s years to achieve this, but it was still a big breakthrough—all the more so because it meant we could now teach Dale to take care of himself in the same way that he looked after his dog.
With Henry’s influence, I even taught Dale the basics of cooking. As a retriever’s stomach is never full, I showed Dale how to make toast for himself and Henry, cook sausages—always an extra for his dog—and fry up the compulsory juicy steak for his canine friend’s birthday. Dale clearly enjoyed this independence and never more so than when I taught him how to safely make a cup of tea. I showed him how to use the electric kettle and bought him a tiny single-cup teapot, which he used to practice pouring hot drinks. With careful guidance and strict rules, he was finally able to help himself to his favorite beverage whenever he felt like it. One day, I rather unkindly pretended I was unwell, suggesting a cup of tea might make me feel better. The result of Dale’s labors was the most tasteless, cold, disgusting liquid I had ever drunk, but it was also the first cup of tea he had made me, so I told him it was lovely and that I felt much better, which in a way of course I did.
Jamie and I could hardly believe our luck. At long last our twelve-year-old son could greet us in bed in the morning with tea and toast. In time, if ever we had visitors and needed more than two cups of tea, Dale would fret about getting the “order” wrong and write it down like any good waiter. He quickly became an expert, and visitors were very impressed with the quality of his service and drinks. The icing on the cake was that this much-practiced task had the added benefit of improving Dale’s social skills and increasing his sense of independence.
In August 2000, Dale returned to Overton for his final year at primary, which was to bring great steps forward. Out of school, however, there was a setback in that after all Dale’s success with the church Boys’ Brigade, the group was to be disbanded for want of a leader. Robert had been attending a local Scouts group since he was a young boy and suggested that Dale go with him there instead. Dale was put into Robert’s group, and the pair of them attended every Monday night. Dale did so well that even when Robert left the group, he continued on his own and was eventually promoted to group leader.
At school, one big event for Dale’s class was a trip away to give a performance at a millennium festival. The teachers worked hard with Dale, and his previous drama experience helped, to the extent that he felt confident to go on the trip and take part in the performance—no mean thing, given that an overnight stay in Inverness was involved. I was given this extraordinary news by one of Dale’s teachers, Mrs. Cannon, and remember virtually skipping down the road with glee afterward. Mrs. Cannon assured me that while she would keep a close eye on him, he would mostly be treated just like any other boy in the class. This was music to my ears because it had not been necessary to date to tell the other children of Dale’s autism and I was delighted that the situation would remain that way.
By now, Dale seemed to be having this kind of positive effect generally on the people working with him, such was his motivation to be the same as everyone else. It was a time I will never forget because he was taking the kind of steps that so many parents took for granted in their own children.
So, with a weekend bag packed by Dale himself, Amy in her stroller, and Henry by our side, we waved the school bus off. Some parents were crying, as it was the first time they had been parted from their children like this. So was I, but mine were tears of pride.
When Dale returned, we could only get one short sentence out of him as to the success of the performance: “It was good.” There was no stopping him, however, as he told us of all the fun, antics, and downright misbehavior of some of the kids at nighttime, which had kept him hugely entertained. He had obviously learned a lot of positive things, too, that weekend, and we didn’t worry about him picking up bad habits from the other kids. Because the process of teaching him right from wrong was so literal, we could pretty much guarantee his behavior would be impeccable and that he would always respect his teachers and others in similar roles.
With the success of this trip and Dale’s extracurricular activities, he was now up for anything. On the many camps he began to attend with the Scouts, he took up a number of outdoor pursuits, and his increased confidence and fearless nature particularly enabled him to master activities such as rock-climbing and rappelling. It seemed the sky was, literally, the limit.
11
Tough Decisions
Although the transformation in Dale was enormously pleasing and positive, his autism still had a major impact on the quality of his life. He was so anxious to learn, fit in, and succeed that this became an obsession in itself—not entirely a bad thing, but it did create problems. He couldn’t cope with not being able to do something and would get really upset if a particular task or situation was beyond his reach or control. Having successfully established himself at Overton, the biggest pressure of all in his mind was keeping up with homework and integrating with his peers without blowing his cover. Another major issue for Dale, albeit unknown to him at the time, was that he was still unaware that he had something called autism.
Neither we nor the school placed too much emphasis on academic success, but when it came to homework, Dale always insisted it was finished, no matter how confusing or difficult he found it. His unfailing determination to be like everyone else left us no choice but to buckle down and try to help him achieve this goal to his own level of acceptance.
This meant I would sit and help him, Amy suckling at my breast, Henry at our feet, night after night for two or three hours, until Dale felt he had satisfactorily completed his homework. Even with all the help from the Kumon course, mathematics remained a serious obstacle for him, and I worried generally that the academic pressure of mainstream might be his downfall.
Dale’s poor understanding of English within the various subjects was his greatest barrier to learning. Sometimes simply one strange word would alienate the context of an otherwise familiar sentence and totally faze him. For example, in a standard question like “What are the perceived strengths and weaknesses of sheltered housing for the elderly?” the word “perceived” would throw him and he would just guess at the answer. The school did everything possible to help him, but as the language used in all subjects was advanced, it caused him much anxiety. His “word bank” book, however, in which he recorded any new words he came across, helped a little.
Despite this major hurdle, the physical games and activities he took part in at Scouts enabled him to excel at PE, especially basketball—Dale had grown tall and was older than his classmates, both of which helped. Dale also enjoyed subjects that were of social value, such as modern studies and religious education, where the class discussed issues like euthanasia and capital punishment. While most kids found this boring, we encouraged Dale here and had many a riveting talk as his capacity for self-expression grew and he became more aware of the society in which we lived. Not least, discussions on modern medical ethics, including topics like IVF, enabled him to understand the miracle that was Amy. Despite, or perhaps because of
his difficulties with academia generally, no parents could have been more proud than Jamie and me when Dale ended up winning the Religious Education Prize in his fourth year.
As Dale struggled to cope with the English barriers, however, through each day and laborious night of homework, his awareness of being different from the other kids steadily escalated, as did his frustration. “Why can’t I do this?” he would exclaim angrily. “I’m fed up of having problems. Why have the problems not been left at St. Anthony’s?”
As the weeks went by, it got harder to reassure him, until one night, after three exhausting hours of homework, he screamed in fury, “Why me? Why did I get born with problems?” He raged on and then suddenly turned to me, demanding, “Do these problems have a name?” A day we never thought would come was now a reality.
With increased progress came increased insight, and there was no denying that it was time cautiously to tell Dale the truth. As it was now very late in the evening, however, I promised him we would have a good family meeting the next day after school and tell him all he needed to know. He accepted this, as he was used to regular family meetings to discuss issues that may have occurred due to his autism. The only dilemma was how we would explain this delicate situation to him and make the word autism as positive as it could be.
Jamie and I discussed what our approach should be, and I hit on the idea of using a public role model to give Dale an example of what could be achieved in spite of having a disability. Through my work as a community nurse, I had contact with a patient, Margaret McEleny, who had won a Paralympic gold medal for swimming. Such was her success in sport that she was a highly respected public figure locally. Because I knew Margaret well, Dale had met her on many occasions, and I would always point out to him her outstanding achievements when they appeared in the press. Jamie and I agreed that his familiarity with her situation, in that she used a wheelchair but was an amazing swimmer, would help him to understand that his achievements were similar to Margaret’s, albeit in a different way.
A Friend Like Henry Page 14
