It was ironic that adults and professionals found it hard to understand Dale’s autism and problem with eye contact, whereas children sometimes took it more in their stride. A very nice five-year-old boy from the language unit, who had Asperger’s syndrome, part of the autistic spectrum of disorders, had the insight to recognize Dale’s problems with eye contact when he told his mum that he thought Dale was blind. This was because he had noticed Dale’s eyes were always cast down to the floor, instead of looking at people. When I bumped into the mum in town one day, she eagerly told me her son’s latest observation: “Now that Dale is not blind any more, it’s good they let him keep his guide dog.”
Jamie and I decided Dale should go to St. Anthony’s, a mainstream primary school about fifteen miles away which had a new unit for children with autistic-spectrum disorders. There would be about six pupils in both of the classes in the unit, with a ratio of one member of staff to two children. This was the exact provision Professor Newsome, the specialist who had diagnosed Dale with autism, had recommended in her report. The objective of the unit was to address the children’s deficits and, once they were able to cope, allow them to integrate with the mainstream pupils. Although this meant Dale making the thirty-mile round trip by bus every day, we thought it was worthwhile, as the unit ultimately aimed to get the children to a level where they would be able to attend their own local school.
Dale did not even like small changes to his routine, and as a new school would be a total life change for him, a great deal of work was required to prepare him for the move to St. Anthony’s. With this in mind, Paula and a teacher from the new unit drew up a transition plan, which involved the new teacher making many visits to the language unit and Dale making a similar number to St. Anthony’s. This introduced him to the concept of wearing a uniform, which he would now have to do, as well as traveling in a bus. These measures would be taken for weeks on end; meanwhile, aware of Henry’s impact, Paula came up with a great idea. With our help in providing the appropriate photographs, she prepared a picture book to show the various stages involved in Dale going to his new school—there was Henry waving goodbye with his paw, a nice shiny bus, a photo of St. Anthony’s, and a picture of Henry welcoming Dale home again. When it came to the big day that Dale started school, with a few Thomas stickers on his little bag helping to boost his confidence, everything happened exactly as shown in the book and all was well.
The picture book made such an impression that when we decided to take Dale back to the language unit with some gifts to say thank you to Paula and the other staff members, he refused to go through the entrance doors because this was no longer his school. As we knew that if we forced him he would have a full-blown tantrum, Paula had to come down to the main entrance and our farewells were said in the street.
Despite the difficulties encountered before Dale was formally diagnosed, I will forever be grateful to Paula for all her help with him, especially because he was the first child with severe autism in the unit and she took a real chance taking him.
With Dale having survived the huge change of a new school, life seemed to be going well for the first time in years. Now that he was toilet-trained, he was also able to go to Sunday school and was happy to do so as long as Jimmy and Dorothy took him. He rang the church bell and all there were quite taken with him, despite the fact that he adopted the bell as his own and refused to let other children have a go.
For this latest venture to succeed, there had again been careful preparation in that Dorothy had told the woman who ran the Sunday school about Dale’s difficulties, and she had enlisted the help of her daughter to support him while he was there. For us, this was another invaluable way for Dale to integrate and socialize with his own peer group, something that could not happen while he was in the special unit at St. Anthony’s. Nonetheless, he had settled in well at St. Anthony’s, and we were all happier than we had been in a very long time.
One day in September, I was standing at the window watching Henry playing with Dale when I noticed something wasn’t right—with Henry, that is. With growing concern, I watched him chase around the garden, displaying a slight but definite limp, favoring his right front paw. Over the next few days the limp became more pronounced, until Henry finally refused to go out for a walk, or even into the garden; to get him to go to the toilet, Jamie had to physically lift him and take him outside. Our poor dog seemed miserable, even depressed and, most worrying of all, was not interested in food. I immediately took him to the vet, Nigel Martin, and was appalled to learn that Henry was very ill—lame in all four legs and in a lot of pain. Nigel suspected he had either a very serious condition with a long Latin name that I cannot remember or something called panosteitis whereby his bones and joints had grown too fast, making them weak and inflamed. The only way to reach a diagnosis would be by X-ray, but for this Henry would need a general anesthetic, which Nigel could not recommend because of his poor condition. In any event, with or without the X-ray, the treatment would be the same, and so high-dose steroids were prescribed for the next month. I was devastated to learn that in cases where the treatment was not successful, it was usually kinder to put the dog to sleep.
Nigel was so understanding as I tearfully tried to explain what this dog had done for Dale and how much he meant to us. “This isn’t just a dog,” I kept saying. “This isn’t just a dog.” He did his best to reassure me and said all we could do was wait and see how Henry responded to the treatment.
Because we couldn’t take Henry out for walks and were giving him medication, we couldn’t hide from Dale the fact that his dog was ill, but we did our best to shield him from our true feelings. I will never forget how he adapted to the situation and cared for Henry as he rested in his bed, showing him understanding and kindness, gently stroking his fur and talking to him. He was behaving toward his dog as we would toward him if he was ill.
Once, when Jamie had lifted Henry onto the sofa, where he had fallen asleep, Dale fetched his train blanket and wrapped it around him. Then he gathered his collection of trains from upstairs and placed them around Henry. He would in his own immature way tell Henry stories from his Thomas the Tank Engine comics. He was not of course actually reading, but re-enacting videos, mostly picking out stories concerning Henry the train.
Throughout this time, Jamie and I sat nursing the dog in deep despair, with me repeatedly asking, “Why us, after all we’ve been through?” I just couldn’t take in that this could possibly be happening to our dog, but Jamie tried to comfort me through this ordeal.
After a couple of days, I served Henry one of his favorite dog foods and was overjoyed when, instead of sniffing at it and turning his head away, he started to eat with something resembling his usual appetite. The steroids had started to do their work. He began to rally and became more and more his old self again. When I was sitting on the bed one day, the real breakthrough came when Henry walked in holding a squeaky toy in his mouth—I was pleased enough to hear the noise of him squeaking the toy, but was absolutely delighted when he actually jumped up on the bed beside me. I clasped him around the neck and said, “Henry, good dog. I love you!” Dale came in and saw what was happening, and was even more thrilled than me, if possible, to see his dog so well.
After a month, Henry was totally back to normal and enjoying his evening walks with Jamie and Dale. I felt so thankful that he had recovered and could not have been more delighted once again to be eaten out of house and home.
Birthdays were a real source of stress. Just as Dale didn’t like the appearance of the house to change at Christmas, so he didn’t like the number of his age to change on his birthday. If only I could have explained to him that neither did the rest of us but we learned to put up with it! As it was, we had to deal with tantrums at birthday parties, rather than celebrations.
Henry’s first birthday was on December 17, and as the day approached, we thought we’d try to use the occasion to help Dale. We involved him in the whole process, from buying a new toy and bir
thday cake, candle and all, to taking him with Henry to the butcher’s shop to choose a nice, juicy steak. Dale made Henry a card and even helped to cook his steak, then laughed happily as he watched Henry devour it. We would have to wait and see whether all this had any effect when Dale’s birthday came around the following June.
For the first time in ages, I was really looking forward to Christmas, all the more so because I was convinced I was pregnant. We’d had a few false alarms before, but this time I was three weeks late. We were all going to go to the garden center once Jamie came home from work, to choose a real Christmas tree, but just before he arrived, I discovered to my extreme disappointment that I wasn’t pregnant—it had been another false alarm.
Jamie turned up, full of the joys of the season, and shouted, “Come on, Dale, get in the car. We’re going to get the Christmas tree.” He then called to me, too, to hurry me along. Because of my news, I was not exactly in a festive mood, and Jamie called again: “Come on, Nuala, let’s go.”
I didn’t want to get into the whole thing at that point and told him to go and get the tree without me, I wasn’t feeling too well. Jamie didn’t get the message and hustled me again. Not realizing that Dale was by now just behind him, I lost patience, snapping, “Look, just go and get the fucking Christmas tree.” So off they all went, with Jamie feeling understandably miffed by my outburst.
That night, after Jamie had decorated the tree with the help of the dog, he came up to see what was happening. At the top of the stairs, he found Dale playing with his trains. Nothing unusual about this…except that he was using my tampons as trucks. Jamie immediately realized what was wrong with me and found me in the bedroom tending to my tear-streaked face. He was very comforting and tried to reassure me that things would work out eventually. After we’d talked it through some more, we decided that we would carry on as we were for a while, but might ultimately need to seek medical help, because we did not want Dale to be an only child.
Christmas Day came and Henry, delighted with the whole concept and proudly wearing tinsel round his neck, was presented with his gift, a new toy, which Dale had chosen and wrapped. Then Dale helped dish out Henry’s turkey dinner with all the trimmings and served it to him. It lasted about five seconds.
Dale’s Uncle Peter and Aunt Carol were with us this year, and after Henry had been fed, we all sat round the dining table for our own Christmas meal. We pulled crackers as usual and fired off party poppers, Dale’s whizzing off in the direction of Uncle Peter, multicolored streamers raining down on his head. Dale observed cheerily, “Funny Uncle Peter, he looks like a fucking Christmas tree.”
In the New Year, Dale took an interest in a Charlie Chaplin video that Jimmy had given him. I think he particularly loved this because it was nonverbal, with the over-animated slapstick humor being easier to interpret than a bombardment of language.
Another thing he liked to watch at the time was 999, which showed reenactments of accidents and how they were dealt with by the emergency services. One day, when he was sat in front of the TV with Henry, we heard him say, “Oh, that’s terrible, that’s not nice.” We immediately stopped what we were doing in the kitchen and hurried through to the lounge, not quite believing that our son was actually sounding as though he felt sorry for someone. On the screen, there was a badly injured woman in a mangled car. We eavesdropped as Dale went on, “Oh, dear, Henry, that’s a shame.” Jamie and I looked at each other in amazement—at long last our son was showing empathy—but with impeccable timing came Dale’s punchline: “It’s all broke, Henry. Poor car.” We resigned ourselves to a slightly longer wait for empathy.
Despite our continued efforts to engage with Dale when he was in “his” world, he often refused to let us near. We would try to play with his trains with him, although sometimes just picking up or even touching a train would bring on an enraged tantrum. With Henry, however, it was a different story. If he helped himself to a train, such as Grand Gordon, Dale would simply pry open his jaws and take it back, saying, “That’s not good, Henry. You’ve got my Gordon, and you don’t do that to Dale.”
I remember observing one such incident and saying to Jamie, “He’s let Henry in. That dog is totally a part of his world. But we’re still just objects, there to meet his needs.”
“I get more response from Henry than I ever do from Dale,” Jamie agreed.
At that moment I was really feeling the lack of that crucial emotional bond which most mothers are able to take for granted with their children.
Jamie understood, but reminded me this was autism we were dealing with. “He may never love you, Nuala. He doesn’t know what love is. You just have to accept that.”
“How can I accept it?” I retorted. “I’m his mother.” No matter how much my son was to progress, I knew that deep down it was words of love and affection I so desperately needed to hear.
Back in the real world, Dale was at least becoming more sociable with anyone who took an interest in his dog. Jamie was out in the front garden with Dale and Henry one day when a lady walking by stopped and said to Dale, “What a lovely puppy you have.”
“This is my dog,” Dale began. “His name is Henry. He’s just a puppy. He’s going to grow to be a big dog.”
Jamie came rushing into the house, brimming with the news. “He’s just made a speech to a total stranger!”
Wonderful stuff, although apparently after that things had gone downhill in that Dale had leaned toward the woman and sniffed her. Autistic children are very sensitive to people they meet, and I think they work out in their own way whether a particular person “understands” them. I think if Dale felt comfortable with someone, or “liked” them, he would smell them perhaps to get to know them better.
By the spring of 1995, we had come to accept that it was going to take years before Dale would be ready to let us into his life in the same way as he had embraced Henry. In spite of all the speech therapy, specific programs at school, and our own input, it also seemed that it would be a very long time before he would learn to integrate and socialize appropriately. He still had great difficulties with interpreting facial expressions and non-verbal communication generally, as well as problems with intonation. Not only would he speak in the wrong tone and laugh inappropriately, but also hearing certain words caused him particular distress. If we said “OK” or another word he didn’t like to hear, such as school, he could fly into a fit of rage.
Although we were aware of this, they were common words and it was impossible not to let them slip sometimes. Having to mind every word we said in case we inadvertently prompted a tantrum was extraordinarily difficult, but we could never have foreseen how, because of this very problem, our life with Dale and Henry was to take an incredible twist.
One seemingly normal day, while Dale drew happily in the dining room with Henry at his side, I checked his schoolbag to see if there was a note from his teachers about homework. I found his notebook and, noting that his handwriting was much improved, went over to him to show him the page I was so pleased with.
“Dale,” I told him, “your writing is very good. I’m so proud of you.”
Dale immediately took great exception to this, and I remembered too late that the word proud was one of the ones he couldn’t bear to hear.
He stormed around the room, shouting, “Don’t say proud,” all the while clutching at his head.
I tried to reassure him, saying, “It’s a good thing that I’m proud of you. It’s OK.”
If it hadn’t been for the stress of the moment, I might have avoided the word OK, but again it was too late and my little boy’s distress escalated.
“Don’t say OK,” he screamed, and I knew he was heading into a full-blown tantrum as he started to bang his head furiously against the wall. I had no option but to restrain him the way I always had to in the past.
I sat on top of him, cradling his head as I tried to reassure him. Henry was by now used to seeing Dale like this and just lay by his side, watching him. Such wa
s the force of Dale’s anger that I had to sit with him like this for over forty minutes, during which he ripped the sleeve off my blouse. This was the scene that greeted Jamie on his return home from work. Hugely relieved to see him, I said to my still struggling, wailing son, “Dale, look who it is—it’s Dad.”
Also trying to reassure him, Jamie said, “Dale, I was hoping we could go for a run in the garden. Would you like that?” But even this was to no avail, and Dale remained crimson-faced, eyes popping out of his head with rage.
I remember muttering to Jamie, “This is terrible, even the dog looks worried now.”
For some reason, this produced in Jamie a moment of divine inspiration. He suddenly adopted a deep, refined voice and told our son, “Dale, this is Henry speaking. I hate it when you cry. I’m so worried. Could you please stop this?”
On hearing this, Dale immediately calmed down and composed himself, telling his dog, “All right, Henry. I’m sorry.”
Jamie and I looked at each other in slightly bewildered relief, and then Jamie said in the same deep voice, “So, Dale, shall we go for a run, then?”
At these words, my little boy sat up, practically threw me off him, and said, “All right, Henry, let’s go.” Out into the garden they went, Dale pulling Henry by his collar.
Later that night, with neither of us yet fully appreciating what had happened earlier, we steeled ourselves for the forthcoming bedtime battles.
Jamie first broached the subject, suggesting, “Dale, pajamas, it’s bedtime.”
Henry was lying in front of the fire, deep in a contented sleep. Dale looked at his dog, then went over to Jamie, shaking his jacket, though not looking at his face, and said, “No, Dad, speak like Henry.”
Again, Jamie and I exchanged a look, then I nodded toward the dog and gestured that Jamie should do as Dale had asked. He agreed and, in what would become a very familiar voice, said, “Dale, this is Henry speaking. Please get your pajamas. It’s bedtime. I’m tired. I’m going to my bed.”
A Friend Like Henry Page 6