In the meantime, as with Dale, part of the process was that Amy would require the help of an educational psychologist. This was to be Mary Smith, the same person who had assessed Dale when we were so desperately trying to get a diagnosis years earlier. Given our suspicions that Mary had previously held a fairly low opinion of the way we handled Dale, we were hugely anxious that she was now coming to visit us at home to assess Amy. But Jamie and I concluded that as the main point was to get Amy a prompt diagnosis and the specific help she needed, we would give Mary another chance and not be obstructive.
On November 11, 2002, Mary Smith arrived at our house, bringing with her a speech therapist who had worked with Dale at the PSLU at Highlanders. Although I was determined to fight for Amy, when it came to meeting Mary again I knew I was emotionally very weak, and so Jamie took time off work to support me through the encounter.
The speech therapist worked with Amy at the dining table, assessing her as they went along, while Mary spoke to us with exactly the same demeanor as she had twelve years earlier when we met her about Dale. I sat beside her on the sofa with Jamie rooted to a dining chair. Trying to control my anxiety, I told Mary about what we had witnessed with Amy and that we knew it was autism. I will never forget how she casually smiled at me and said that Amy was not like Dale, because “He was severe.” This from the person who had repeatedly denied he had autism before we finally got him diagnosed.
I asked Mary when Amy would get a place in the PSLU because I knew that with early intervention and specific therapy there, as well as my continued efforts with her at home, she would thrive. To my horror, she told us, “A place is likely to be available next August,” adding, just as we had heard all those years ago, “Nursery provision is scarce.”
Jamie sat silent and shocked by the events unfolding, and I could see the speech therapist was also uncomfortable—although I sensed she was in agreement because of the reassuring looks she gave me. As a last resort, I asked Mary if a record of needs could be opened for Amy as this would strengthen her case, only to be told, “It would be better to wait until the professionals have got to know Amy.” This was already Amy’s third assessment by professionals, and I would have thought her needs could by now easily be identified as autism.
Voice trembling, I asked Mary if I could at least have Terri back to help me work with Amy pending further assessment. She conceded she would make the referral. Before she left, I asked her if she agreed that Amy had autism and she replied, “Let’s wait and see what the people up at Skylark say.”
With Amy in my arms, I showed Mary to the door and summoned all my willpower to bid her a dignified good-bye. I thanked the speech therapist for the way she had worked with Amy, commenting on the irony that Amy had responded well and would clearly improve much more quickly if only she could have ongoing help of a similar nature. Then I walked back into the room, set Amy down, and yelled at Jamie, “Why didn’t you say something? You sat there totally silent!”
Struggling to respond he said, “I can’t believe what just happened. I can’t take it in.” I hadn’t realized he’d been in a state of shock the whole visit and had found it hard to participate.
Once Amy was safely up in her bedroom playing, I could no longer control my anger and despair. I sank into a huddle on the floor, sobbing, unable to comprehend that this was happening to us again and feeling totally at sea, with my husband “lost.” But Jamie found me and clutched me to him, also crying. We held on to each other a few moments before I pulled back and looked him straight in the eye. “That’s it. We are not going to take this again.”
Over our usual remedy of a cup of tea, we decided once more to seek help and advice from Jim Taylor and Janet Stirling, as they both knew us well. Jamie and I also wrote to the education department asking for a different educational psychologist to be assigned to Amy, and thankfully this led to the same person who was now dealing with Dale being allocated.
Unable to accept what Mary Smith had said about nursery provision, I called a local school, Moorfoot, which I knew had an excellent mainstream nursery. I was greatly encouraged when the head teacher, Sylvia Gillen, invited me to come and see her. She really understood my plight and said she would do her best to get a place for Amy in the nursery. True to her word, she was then able to offer a place from February for five mornings a week. I decided in addition to keep Amy’s two afternoon slots at Madeira, to give her as much opportunity to socialize as possible.
Terri began to visit for one afternoon every fortnight and again became a lifeline, full of compassion. In the meantime, to fill the twelve-week gap before Amy started at Moorfoot, I channeled my grief into working intensively with Amy, using her obsession with Winnie the Pooh, just as I had with Dale and Mickey. This time, I wasn’t totally alone, as the amazing Henry was once again part of the process, albeit in a slightly different way.
With Dale away at school all day, Henry was in Amy’s face as much as mine, so in a sense she had “company” to relate to. Either he would break into her play or she would want to play with him, and, as with Dale, she would help care for the dog and learn through this, especially his feeding sessions. Amy had always enjoyed a really healthy and varied diet, but as her autism emerged, she developed obsessions with food, sometimes refusing to eat at all. Hungry Henry stepped up to the plate—or bowl at least—and taught her what the process was all about, just as he had her big brother.
Amy’s imaginative play was poor, so I obtained out-of-date oxygen masks, a mini, mock intravenous fusion bag with a line attached to look like a drip, a child-size doctor’s coat and various other medical accoutrements, all in a proper doctor’s case which was being thrown out from where I worked. I threw in my old stethoscope, and with all these props we spent many a time playing animal hospital, with Winnie and his furry friends as patients. The best and most fun patient of all was Henry. He would lie and let Amy do anything she wanted to him, with a toy auriscope in his ear and mock syringes to give him his medicine. Through time, she would play appropriately with him on her own as he slept throughout his various medical treatments and examinations.
Such was Henry’s success as a teacher that Amy herself developed a special way of connecting with him, even if she did insist on calling him Harry. No matter how hard I tried to get her to use his correct name, it was futile; she had quite clearly adopted “Harry” as her dog, while Henry was Dale’s. But we capitalized on this initiative as we had with Henry’s voice—if it motivated Amy to play and get involved with the dog, we were happy to go along with it. And it did reap benefits by encouraging her to communicate; if she saw dog toys when we were out shopping, she would say, “Nuala, buy this for Harry,” or, “Amy want to give Harry a biscuit.” She always referred to herself by her name, just as Dale used to, and it would take months of patient correction and practice for her to master the use of pronouns. Funnily enough, she had also started to call both Jamie and me by name. This was because in an attempt to stop her butting in like Butting-in Betty, I told her once that she had to wait and say “excuse me,” and then the person’s name, so they knew she was talking to them. Such was her literal interpretation of this rule that we knew it was too difficult for Amy to understand and so we allowed her to continue using our names—in a sense, she was right to do so, as this was what she had been told. However, to try and redress the balance, we would slip in a “Mum” or “Dad” when conversation allowed, to remind her of our roles.
Despite its incredible success with Dale, we didn’t want to use Henry’s voice with Amy quite simply because she was “too good.” As she was easy to engage with and already showing great potential, we felt any attempt to use the voice would have hindered and confused her.
While we now had the help of “Harry” and the Madeira nursery as well as my own input, there was still no substitute for Amy having someone of a similar age to play and interact with. Nina had become a wonderful friend, giving Amy a lot of guidance and even mothering her. It was as though she had
picked up that Amy needed help and didn’t understand things easily, and it was touching the way she took care of her and kept her on the right track. Amy would also quite often play with Lorraine’s grandson, Reece, who was eighteen months her junior, but they still got on well together. Reece’s mum, Lisa, was aware of how I was trying to break into Amy’s world and help her socialize with other children, and one day she hit on a great idea.
Amy had developed a fear of bath time, so I would only bathe her when totally necessary. Lisa suggested that every Monday evening I should drop Amy off at her house for a play session with Reece, followed by the two of them taking a bath together, in the hope that the whole experience would be fun for Amy. So for ten weeks while awaiting our place at Moorfoot, I would drive the sixteen-mile round trip this entailed and Amy would be waiting for me in her pajamas, hair all done up in ribbons and bobbles. With all the fun of having company in the bath and lots of face-to-face contact, Amy slowly came alive again. Lisa was a natural teacher, and Amy clearly adored her and the time she spent with Reece. As soon as I got Amy home, she would pull her hair asunder, but Lisa never gave up and every week when I picked Amy up she would look like a model child from a magazine, who, more importantly, radiated happiness. Lisa’s scheme was ultimately completely successful, and I was able to get Amy back into the bath again at home. Just as Henry had all those years ago with Dale, another friend had stepped in and helped us overcome a familiar hurdle.
With all the intensive input in the buildup to starting at Moorfoot, it was a huge relief to see the spark coming back to Amy. Her language and comprehension had improved and, crucially, much of the echolalia had now gone, which was reward in itself. A week before Amy’s third birthday, the speech therapist came to reassess her in readiness for starting at Moorfoot and the PSLU. We sat at the dining table with Amy directly in the speech therapist’s eye line, and Amy seemed to be responding well as they went through various different tests. Finally, the therapist turned to me, saying, “You’ve been working hard, haven’t you?” I didn’t fully understand what she meant and watched cautiously as she checked the assessment tool to see what developmental stage Amy had reached. To my complete astonishment, she now had a language and comprehension level of thirty-two months—she had gained fourteen months’ progress in three months.
I was both mentally and physically exhausted, but there was no denying this intensive and early intervention had worked. Not only could Amy now take full advantage of the education on offer at mainstream nursery and eventually Moorfoot itself, but to my eternal relief, she was no longer a candidate for the PSLU, which would allow another child to have the chance of such a vital place.
On January 22, 2003, we made a second visit to the Skylark Child Development Center in Greenock, the first one in December having been viewed by them as a preliminary assessment, just to see whether Amy was on the autistic spectrum. The outcome was that Amy did fulfill the criteria for autistic-spectrum disorder, but thankfully it looked as though she was at the higher-functioning end of the spectrum. We were given the opportunity to return in a year’s time, to see exactly where Amy fit on the spectrum, but in fact decided against this, for two reasons: firstly, we wanted to avoid the stress of unnecessary encounters with professionals, our sense of trust still damaged after our experience with Dale; and secondly, we felt we had enough to go on with what we’d been told about Amy not to want to block a vital appointment for another family desperately awaiting a diagnosis.
All this had not come without a cost to my health, though. In February 2003, I had a terrible headache and tightness in my chest like a vice. I had had many similar episodes before, but this was the worst ever. After seeing my GP, I was admitted to the hospital for cardiac monitoring. The consultant, hearing of the situation at home, prescribed Valium for my blood pressure—following which I had the best two hours’ sleep I’d had for a long time. I had to be careful from then on not to overdo it, but I didn’t regret pushing myself because I was to find out from Amy herself how worthwhile it would be to see her return to almost the little girl I had.
When Amy started at Moorfoot Nursery, I kept in close contact with the teachers and staff and was delighted to find that she blossomed with their excellent input. As a result, her social skills improved tremendously, so much so that she was able to fully participate in both nurseries’ nativity plays at Christmas. I think this was possible because of what she had done throughout her time at Madeira.
I also enrolled Amy in a drama class run by Carole Fry every Saturday morning at the Arts Guild. We particularly enjoyed seeing Amy at the usual end-of-term show in March, in front of a full house at the Arts Guild Theatre. After a scene featuring Amy in the chorus had finished, knowing her Granny Dorothy was in the audience, she ran back on to the stage and shouted, “Hello, Granny!” She did this so naturally that the audience laughed with delight, thinking it had been rehearsed to look like an ad-lib. Her various other antics stole the show, especially at the end when the senior class was doing their grand finale. The plan was that during this the junior class would run into the theater and stand below the stage to join in with the final number. Amy was having none of this, however, and ran up the stairs onto the stage to take part with the seniors. Following this, I managed to get her involved, as I had with Dale, with many activities such as art, junior Brownies, and gymnastics, all of which helped her social skills further.
Our daily life continued, and I carried on with my community post, helping families care for their terminally ill relatives at home. A new part of our everyday routine was visiting my dad at Merino Court. I often took Amy with me, and the staff there was so understanding that Henry was allowed to visit too. In a sense, he became a “Therapet” to the home’s residents and would lie in the communal lounge as if he were a permanent fixture. Many a subdued resident who showed no interest in interacting with people would acknowledge and respond to Henry. Everyone looked forward to his visits—as in fact did he, perhaps because the nurses gave him treats.
The staff embraced Amy as much as they did Henry, which allowed me to spend quality time with Dad. They thought nothing of letting Amy “assist” the residents’ hairdresser or activity therapist for hours, and in a way these visits for her became like the Wellpark had been for Dale. One day in particular, Amy had disappeared off with the hairdresser as I sat with Dad in the lounge and Henry at his feet. Over an hour went by and I periodically checked that the hairdresser was happy with her young assistant. She never demurred, but when she finally came back to me, hand in hand with Amy, she gave a big smile, saying, “She’s a lovely little girl, but can you take her batteries out now?” This was a perfect example of how Amy was now “over-sociable,” getting involved with and literally interrogating anyone who was willing to listen.
Amy got to know a few of the residents personally, and one of her favorites, for obvious reasons, was a lady called Winnie. Winnie would ask Amy to draw her a picture, as would other residents and even staff members sometimes, and she was always happy to oblige. Due to the nature of this type of environment, however, it was inevitable that days came where there would suddenly be a new resident in a chair where Amy had known the old one, and so she slowly grew to understand the concept of old age and dying. We told her that the person who used to be in the chair had gone to heaven like Granny Madge and that it was a nice place that looked like Teletubby Land, only without the Tubbies. She confirmed her grasp of the situation one day with the pronouncement, “When it’s Granda George’s turn to go to heaven, there’ll be a new man in his chair when we go back.”
When we were facing the most challenging aspects of Dale’s behavior all those years ago, I’m sure we’d have jumped at the chance of dealing with a child at the opposite end of the autistic-spectrum disorder, but Amy’s superior ability with language didn’t necessarily make our lives any easier. Because she was able to manipulate a situation or obsession and interrogate us about it, as she had with the hairdresser and many other hap
less victims, this made handling Amy even harder. With Dale, once he was “programmed,” he adhered to family and school rules, which made dealing with him a lot easier in the long run. As far as Amy was concerned, however, you would have to jump out of a cake to motivate her to do something and then let her eat it—or at least have a consistent reward system in place to reinforce the message. We have therefore learned that it doesn’t really matter what level of autism you are dealing with; it is how an individual’s particular autistic traits impact their life that is important.
13
A Whole New World
In August 2003, when Dale was fifteen and Amy three and a half, Amy’s ultimate obsession entered our lives—one that we would all have to learn about from scratch, and which would enable me to conquer a lifetime fear.
We had again decided on a family vacation at a nice hotel in Blackpool. One day, while walking along the beach, Amy saw the famous Blackpool donkeys arrive—a dozen of them, names inscribed on their collars. She immediately wanted to go on one and when the lady in charge asked, “Would you like a ride on Harry?” no further prompting was needed. Off they went, with Amy sitting completely naturally and Jamie observing, “She looks like someone in a posse from The Magnificent Seven.” When they returned, Amy was beaming from ear to ear, and the owner of the donkeys remarked that it was a long time since she had seen a child this happy on one of them.
No sooner had Amy dismounted than she insisted on another donkey, called Harvey this time. Four donkeys later, we finally managed to persuade her to leave and headed off to the Pleasure Beach Carnival. Here, we progressed from donkeys to horses, of the carousel variety, and from that day our lives were transformed; whether we liked it or not, it was welcome to the world of all things equine.
A Friend Like Henry Page 17