So, with cups of tea, Amy sleeping, and Henry lying beside Dale, we started our meeting. We began by reminding Dale of Margaret’s situation, which prompted the response, “Yes, but what about my problems? I don’t have a wheelchair.”
We reiterated an already familiar rule—everyone is different—and explained that Margaret’s problem was known as a physical disability, which was why she needed a wheelchair. “But your problems,” I said, “are with not being able to talk and communicate like everyone else.”
We told him that when he was born, it was possible that his brain had been damaged a little, which caused problems in understanding people and knowing how to talk to them and socialize with them in the right way. Or it might have been that he had similar difficulties as Uncle Tommy, due to a link in the family.
We said the word to describe this type of problem was autism and that it could range from being a very small problem to a very big one.
Dale cried, quite calmly, as this unfolded and then asked, “What size is my autism?”
I took a subtle deep breath and told him, “Unfortunately, yours is big, and that is why you had to go to St. Anthony’s.”
We then reiterated everything that he, and Margaret, had achieved despite having got off to such a bad start, and that not all people with his problem did as well as he had. As his tears began to subside, we explained that he had managed to fight his autism so well because of the fantastic help he’d had from his school teachers, out-of-school classes, ourselves, Henry and, more importantly, all the hard work Dale himself had put in.
Jamie told him, “If you didn’t have such a strong desire to be like everyone else, you’d never be where you are now.”
Although quiet, Dale did understand and even felt quite good because he now knew what he was up against. Naturally, there were many times afterwards when there would be frustrated and angry outbursts, but we all agreed that telling him when we did had been the right thing to do. There was no doubt that it helped him to cope knowing his problems at least had a name and that some people understood what that meant.
A few nights later, a subdued Dale approached me. “Mum, can I ask a question?”
“You know you can always do that, Dale,” I reassured him.
He sat down next to me and wondered out loud, “This autism thing…Is Amy all right? Does she have it?”
Telling him that that was a good question to ask, I replied that we were all happy that Amy was all right and doing well.
Although Dale and Robert still enjoyed playing with Henry, they had now exhausted the potential of the Sega Genesis and PlayStation, and so we started buying things for the computer that they could use instead. While they thought they were playing games, which of course was true, the benefit was that they were also learning. Delighted at getting a free rein to access the Internet, Robert soon had Dale up to speed and surfing better than me. As I sat beside him, Dale would use the Web to help with homework, printing off any information he needed to complete the given task. This also served to open up his social world as his familiarity with computer games and jargon enabled him to blend in with his peers—an invaluable factor in the process of transition to secondary school.
While all the work at home and at school was undoubtedly paying off, no amount of such input could avoid the very real possibility of Dale’s vulnerability in the playground resulting in bullying. Although he seemed contented enough, we noticed subtle changes in his behavior and demeanor. Then he started to voice concerns, saying that he didn’t like playtime and a boy he knew was “taking charge” of him—he had to do what this boy said, even to the extent of giving him his lunch money. It transpired during yet another of our family meetings that Dale and another vulnerable boy were constantly being picked on by this boy, who dominated their school lives. The way Dale put it was, “I’m fed up being a servant to the king.”
Knowing his confidence and self-esteem were being eroded, we told Dale that he had done the best possible thing in telling us and had been very clever to do so. We could now do something about it, which this boy would not expect, since all bullies relied on kids not telling. We reassured Dale that he had nothing to worry about and promised that the problem would be sorted.
I then had a meeting with the head teacher, who immediately took appropriate steps. A special social group had been running at Overton for children needing learning support and this was playing an invaluable role in helping prepare Dale for secondary education. The speech therapist in charge absorbed the bully boy into the group, along with a few other difficult kids, and then professionally covered the topic of bullying within it. Together with our support at home, this initiative gave Dale the confidence to deal with any further incidents on his own and, more importantly, let him know that his voice would always be heard.
The boy concerned immediately left Dale alone and became very wary and nervous around him, as he now understood that Dale would make his teachers aware of any problems he had, not least bullying.
The problem in the playground thereafter shifted from boys to girls. Although not unduly concerned, Dale told us that a few of the girls were mocking him and swearing at him. He was annoyed by this because he had been taught not to use such bad language. Jamie and I deliberated on how on earth to resolve the problem without Dale becoming known as a tattletale over every little playground occurrence—things that other children would be able to deal with themselves.
Dale had told us, “I shout back at them, but I can’t be rude,” so we decided that, particularly with secondary school looming, our son needed to become street smart. The tools I gave Dale to manage this problem were, to put it mildly, unorthodox. With Jamie’s consent to my proposed “alternative lesson,” I initiated some role-play in Dale’s bedroom. We sat in front of his mirror so we could see each other’s faces and I carefully reiterated that bad language was indeed rude and unacceptable, but for teenagers at secondary school, like in Dale’s South Park videos, swearing was a part of playground life and it would be OK for Dale to use it in the right circumstances. I emphasized that this should only be as a last resort and that really no one should ever use bad language, especially to anyone in authority and certainly not to their teachers.
Once this rule was firmly ingrained in Dale, we got down to brass tacks. I explained that the girls were only doing it because they knew he wouldn’t respond. “So you need to learn how to answer back,” I told him.
Using the mirror and a determined, angry face, I demonstrated exactly what I meant. “Fuck off,” I exclaimed. “Get off my back.” And so it went on, with Dale copying me, then practicing on his own.
“Fuck off,” he shouted. “Get out of my face. Leave me alone.”
I knew for sure he understood what we were doing when he turned to me with an excited laugh and said, “Mum, you’re good at this—you’re scaring me and I know it’s only pretend.”
The other part of our lesson was teaching Dale the concept of a white lie. I gave him several examples of how we’d used this in the past to help him, so he could see that the white lie was a useful weapon to have in his armory. If a situation in the playground arose in which Dale wasn’t to blame, he was allowed to use the white lie to protect himself. If the girls “told on him” for swearing, for example, he could tell the teachers it wasn’t him. Thankfully, with these new playground tools, it wasn’t long before the bullying stopped.
The alternative lesson also reaped benefits in an unexpected way. Dale’s ability to deal with bullying incidents was so successful that he became like a defender on occasions for Fraser and another friend, Tom, and actually stood up to the school bully. He took great delight in telling us how this boy was now scared of him.
With the hurdles in Dale’s transition process almost all cleared, our main focus became the fact that, now fourteen months of age, Amy was due to receive her MMR vaccine, to protect against mumps, measles, and rubella. This vaccine was shrouded in great controversy at the time as there was a school o
f thought that it could cause autism. When I heard through the National Autistic Society that Dr. Andrew Wakefield would be giving a lecture on this very subject at a conference in Glasgow in March 2001, I jumped at the chance to attend.
During the lecture, Dr. Wakefield described in detail his theory of a correlation between MMR and autism. Dale had had the MMR vaccine at thirteen months, but Dr. Wakefield’s theory didn’t ring true for me because we now knew Dale’s autism had been present from birth. However, when Dr. Wakefield went on to discuss an associated physical condition—autistic entero-colitis, as he called it—I was stunned. Dale had been plagued by every symptom since receiving his MMR vaccine in 1989. The type of vaccine he’d had was replaced after 1992 by the MMR-11, and I couldn’t help but wonder whether the vaccine had contributed to or compounded Dale’s physical problems. I certainly couldn’t ignore the implications for Amy.
During the break, I was lucky to get a chance to speak to Dr. Wakefield personally and explain about Dale and my dilemma regarding Amy. Dr. Wakefield advised it would be prudent to get Dale’s problems checked out, as they could represent a significant obstacle in his progress. As our conversation continued, I also came to the conclusion that repeating the MMR for Amy was not an option. We could, however, consider giving the vaccines individually, since the only other alternative was not to give them at all.
Lorraine and Brian came to pick me up from the conference, bringing Amy with them as they had looked after her for the day. Everyone, including Dr. Wakefield, fussed over her, commenting on how lovely and sociable she was. No one could possibly have guessed quite how proud of her I was, or how relieved that she was developing normally with appropriate language for her age.
For several nights after the conference, Jamie and I deliberated over what I’d learned. We arranged for Dale to see Dr. Mike Thomson at the Portland Hospital in London, since he was familiar with the situation that Dr. Wakefield had described. Dr. Thomson prescribed some very simple medication, and the problem soon resolved itself.
As far as Amy was concerned, we took the informed decision to give her single vaccines at six-month intervals. By a chance in a million, there was a measles outbreak locally and this really brought it home to us that we could never live with ourselves if anything happened to Amy because she had not had the vaccinations.
Another aspect we had to consider was the “double-hit” element of the MMR controversy. There had been a few cases reported where normal school-age children had regressed into autism after receiving a booster of the MMR vaccine. Although many people believed the booster was a milder form of the vaccine given at fourteen months, it was in fact exactly the same dose. Dale had never had a booster, and we were certain that this should also be avoided for Amy—it was just too scary a step to take.
Statistically, one shot of each element of the MMR should be sufficient to cover Amy, so this was what we did.
We faced another difficult decision at about this time regarding Dale’s education. There was a particular secondary school that the children from Overton would naturally transfer to, but because of Dale’s special vulnerabilities, we had to accept that this school would not be suitable for him. Our research into the options available locally eventually convinced us to send Dale to Gourock High School, which had an excellent reputation. It had a unit for deaf children, which fully accessed the main school, and because of this we knew the school would be a disability-friendly environment. It was a tough decision, however, as it meant that Dale wouldn’t be going to secondary with his friends Tom and Fraser.
Because of the success of the Overton experience, we were fully aware of the importance of living in the same area as Dale’s school, and so there was no denying that we would have to move back to Gourock. Fortunately, we found a newly built house in a small neighborhood with a park nearby, which would be good for Amy growing up, as well as ideal for Dale and Henry’s walks.
The provision for Dale at Gourock was excellent, with a full support network including a classroom assistant. As usual, preparation was paramount and Dale made several visits to the school to meet the teachers, in addition to attending the normal induction days. While Jamie and I felt really good about all that was happening, we could see the head teacher had similar concerns as the Overton staff had initially had as to how Dale would cope, but thankfully she had an open mind.
Precisely because of the challenges ahead, we still took every opportunity to boost Dale’s confidence and give him more experience of mixing in a mainstream setting. Because of his blossoming talent for art, we enrolled him in another Saturday class at the Glasgow School of Art, this time among kids of the same age and with no support geared to his needs—for the first time, there was no safety net. I remember a time when Dale skipped down Sauchiehall Street beside us, telling us with great excitement how the teacher had held up to the whole class his monochrome picture of a tiger as a perfect example of the day’s work. We often wonder how he would have managed in Gourock High School without this boost to his self-esteem.
At Dale’s end-of-term awards ceremony, we were over the moon to see him get the top prize for handwriting, and we still have his report card, which described him as a happy and hardworking member of his year. The head teacher, Eleanor McMaster, commented that “With support and encouragement and Dale’s own commitment to work, he should cope with the challenges of secondary school.”
Just before he left Overton Primary, we gained a more unexpected insight into how well Dale had been accepted at school. A girl in his class asked if she could be his girlfriend. Dale politely declined, but thanked her for her kindness. On the final day of school, Dale came home in fine high spirits and with great pride showed me his school shirt, which all his classmates and even the teachers had signed.
Dale was worried that because of the move to Gourock, he would no longer be able to see Ryan, with whom he had developed a close friendship at St. Anthony’s. We assured Dale that if Ryan wanted to, they could keep in touch by visiting each other’s homes on weekends. A successful phone call to Ryan’s parents followed, and indeed the two lads continue to see one another to this day.
The summer ended quickly, and once we were installed in the new house in Gourock, the need to prepare Dale for his journey to school was now top of the agenda. All the same principles as before, when we practiced the walk to Overton, had to be covered again because this was a new area and experience for Dale. More importantly, he now had to cross a busy main road and be on time for the school bus. Ironically, this was the same road where Dale had caused so much havoc ten years earlier when he lay in the middle of the street head-banging because he had dropped Mickey. Ashton Road was even busier now, and this part had no pedestrian crossing. So, with Henry on his lead and Amy in her stroller, many days were spent with Dale going through every stage from leaving the house to showing him where to walk and teaching him all the rules of the road and personal safety. Finally, I identified a “marker” lamp-post at which he would cross the main road to the stop where the school bus would pick him up.
To increase Dale’s sense of independence, we had bought him a Wallace and Gromit alarm clock; he was into these characters at the time because he particularly loved Gromit, the dog. With the help of the clock, he practiced getting up on time and preparing his own breakfast in readiness for when he started school. Dale would also feed Henry before going to school, and Henry would sit by his side while Dale ate his own breakfast, which would consist of toast for himself and an extra slice for Henry.
This new routine was amazing for me because if Amy was still asleep, I would enjoy the luxury of a late morning. For my own reassurance, we introduced into the routine the rule that once school started, Dale would always tell me when he was going—and with any luck I’d get a kiss good-bye, too. Dale learned the whole process by the book, and I would get such a surge of happiness when he shouted as he left, “Bye, Mum, I’m off now. Have a good day. I love you.”
On Dale’s first day at
Gourock High, Jamie and Henry walked down toward the bus stop with him. True to form, however, Dale wanted to be like the rest of the pupils and told Jamie not to come down to the main road as he didn’t want to stick out by having his dad with him. From that day on, Dale was totally independent in going to and from school and fit in seamlessly.
One day when I went to pick Dale up from school to go to the dentist, like many other parents I waited at the gate for the school bell to ring. Once it did, amongst the distant onslaught of hundreds of emerging school kids, I spotted Dale, sauntering along with a couple of other boys, in full conversation and camaraderie with them. As they approached, I could see one of the boys was quite small and young-looking, yet seemed to be the leader of the group.
Dale waved them good-bye, then told me, “Those are my friends. The little guy, Scott, is really eleven, and he’s in the same year as me.”
Being thirteen and tall, Dale towered over his new chums, but their emotional maturity matched perfectly, and I was delighted to see they had accepted Dale as one of them.
Because Dale was a lot older than the other boys in his year, his desire to fit in was stronger than ever. He didn’t want his school friends to know about his autism and especially not that he went to a special unit for more than five years. It didn’t matter that the other kids wouldn’t have a clue what autism was; he was not about to advertise his vulnerability and weaknesses, and just craved to be treated the same as the rest of them. I knew, however, that Scott and the other kids would sooner or later want to know why Dale was older than his classmates and so our old friend the white lie was resurrected.
When Dale was a baby, he had a stomach operation for a common condition called pyloric stenosis, which had left him with a very noticeable surgical scar on his abdomen. Jamie and I told him that if any kids asked why he was only in the first year, he should say that when he was younger he was sick a lot and needed an operation. Because of this, he had missed a lot of school and so had to repeat a year. The tactic worked perfectly as the kids accepted the story without demur when seeing the evidence of the scar. Indeed, it would be five years before any of his friends learned the real truth. So Scott and another boy, Matthew, unknowingly guided their friend Dale through the teenage social life at Gourock High.
A Friend Like Henry Page 15
