A Friend Like Henry

by Nuala Gardner

  The speech therapist was still providing specialized resources that the mainstream teachers would incorporate into his schoolwork as needed, and Dale and another boy in his class got support as required throughout their school lives. This, together with the fact that staff were so prepared to take on board our own concerns, undoubtedly contributed to his success. A good example of the way we worked with them was in relation to French lessons. It seemed pointless to us that someone who had problems fully understanding English should at this stage be trying to learn another language. Our feelings were borne out by the fact that Dale was clearly really struggling with French, and there were other children who did not take French, so Dale would not be seen as different if he pulled out.

  Fortunately, Margie Carracher and her staff from the learning support department agreed with us, and Dale’s French periods were put to better use. He received extra tutoring from the learning support staff and was also able to get his homework done during this time, which allowed him to relax later at home. Unknown to us then, the ongoing support of this teaching initiative would prove to be a lifeline later in Dale’s life: tumultuous changes lay ahead.

  It was April 2002 and Dale was due to visit his Uncle Peter and Aunt Carol, who lived in England and had recently moved to the Stratford-upon-Avon area. He had enjoyed some wonderful trips with them, including a trip to Florida; but the most memorable of all was still to come. Dale had previously traveled down to visit his Uncle Peter and Aunt Carol by air with Jamie’s parents, Jimmy and Dorothy, but this time Peter and Carol were off work for the Easter break and came up with a different plan. They sent Dale a ticket for a flight to Birmingham, where they would pick him up, spend the week with him, and then bring him home when they drove up to Scotland for Easter.

  This was a giant step for Dale—he had never before traveled on his own like this, and we had great doubts initially about whether he would be able to travel on his own, at just thirteen, in a plane full of strangers. We did the usual type of preparation, although because of his previous travels with Peter and Carol, little was needed. He was registered with the airline as an unaccompanied minor and would be given support accordingly. When we checked him in at Glasgow Airport, we nevertheless explained the procedure to him fully, just to make sure. He took to the whole thing in the same way as jumping on his bike and was entirely unfazed by this historic moment. To this day, he flies happily down to visit Peter and Carol on his own.

  When Dale’s first year at Gourock High was coming to an end, we looked back and felt it had been more successful than either Jamie or I had dared hope. Not only was he fitting in and working well at school, but he had made friends and was doing all the things kids of his general age group normally did together.

  As usual with us, however, life was not straightforward. After the schools closed for the summer, we started to get calls from the police telling us they’d found Granda George wandering around areas where he’d lived many years before. I had been doing my utmost to support him, but his mental state was quickly deteriorating. Yet again my colleagues in the community service provided invaluable assistance, and sadly against Dad’s wishes, we had to establish a system of caretakers to enable him to continue living in his own home. They couldn’t be with him twenty-four hours a day, however, and his trips back to his past became more frequent, resulting in several calls a week from the police to announce they had once again found him.

  As if all this wasn’t worrying enough, my dad accidentally set fire to his house. He was now clearly becoming a danger to himself, so my sister Linda and I started to look into nursing-home provision for him. Because of the tremendous demand for good nursing-home places, this was not an easy process, and I ended up spending more time with Dad than I did with Amy.

  One night, around ten o’clock, while trying to catch up on my household chores, the phone rang and Dad’s alarmed night-time caretaker informed me, “George is not in his house.”

  I immediately alerted the police and started to drive around the places I thought he might be. About an hour later, the police called my cell phone to say they’d found him. The poor soul was in an almost collapsed state about three miles from his house, having struggled up steep hills to the gate of the cemetery where Mum was buried.

  This poignant event at least had the effect of catapulting Dad up the waiting list and before long he had a place at the Merino Court Nursing Home. This was very appropriate as he had grown up in the area and it was just across from Dresling Road, where we had lived. Even better was the fact that I knew many of the staff well and had no doubt that they would take excellent care of my dad. This home was to become a special environment in itself, and not just for Dad.

  12

  Harry

  With Dad settled into Merino Court, Dale doing well at Gourock High, and summer ahead, I could at last get back to my everyday routine with Amy. Such was the impact of my father’s deterioration, I was aware that my daughter had been a little left out, and I was looking forward to spending more time with her. I had been taking her to a mother and toddler group locally since she was only a year old, and she mixed well with the other kids despite being the youngest. I had also become friendly with another mum, Pauline Graham, whose daughter, Nina, had been born in the same month as Amy. We’d met in the local park and would now visit each other every week to let the girls play together.

  It was really good to be able to take time out to talk to another mum who was very much on a similar wavelength as me and shared the same sort of views as to how the girls should play and learn together. Amy and Nina soon formed a close bond. I remember just after they had celebrated their second birthdays, Pauline commented on how good Amy’s vocabulary was. She seemed a little concerned that Nina’s was “nowhere near as much as Amy’s.” I told her of my experience with Dale and assured her she had nothing to worry about with Nina.

  It was great for Amy to play with Nina, and I had also already put her name down for a place at a local private nursery, to get her used to mixing with as many kids as possible and prepare her for school when the time came. I was now particularly looking forward to her starting nursery because I’d noticed that she had become somewhat withdrawn, playing quietly on her own and watching more videos than usual. I’d been so involved with my dad’s problems and trying to juggle all that was going on, in addition to my night-shift job, that I did wonder whether she was suffering from not having the same level of attention from me that she’d been used to.

  One morning, Amy was happily playing in her bedroom and I stole a few moments of pleasure by watching her from the doorway, without her knowing I was there. She was lying quietly on the floor, gazing at the little figures dangling from the brightly colored wooden carousel that was spinning in front of her face. I smiled with joy as I watched my precious little girl lying there so content. Then I shifted my position slightly and saw the look in her eyes. I felt a cold, terrifying chill pass through me. She seemed literally in a trance, completely transfixed—not, as I had thought, by the toy’s dangling figures, but by its spinning motion alone. She was totally silent, with no facial expression, as the carousel spun around and around. My heart plummeted, and I had to fight a wave of nausea as I slowly absorbed what I was witnessing.

  I had seen this type of “play” before. Before Dale’s autism erupted. He would lie in a similar way, quietly transfixed by the process of pushing one toy car just a few inches with his little finger, endlessly back and forth. Now here I stood, a dozen or so years later, rooted to the spot by my daughter’s echoes of her brother’s behavior.

  I forced myself to move, going cautiously to Amy, lifting her up and hugging her to me gently. Voice trembling, I asked, “Amy, do you like the carousel? Can Mummy play, too?”

  She looked right through me, then laughed heartily in my face as if she had no idea who I was, but found my anxiety and intrusion hilarious.

  I desperately tried to gain her attention. “Amy, it’s Mummy. Say hello to Mummy.” Sh
e ignored my efforts and continued to laugh as I pleaded, “Talk to me, Amy. Please talk to Mummy.”

  I felt both relief and despair as she finally blurted out in response, “Winnie the Pooh.”

  Now completely confused, I tried to play with her, but she resisted my intrusion and went back to the carousel. I sat glued to the floor, just watching her. This was nothing like the little girl I had spent all my time with until just a few weeks ago—she was a stranger to me, and, apparently, I to her.

  I tried playing more boisterously, just as we used to with Dale, enlisting the help of Amy’s sit-on toy dog that we had bought her for Christmas, which looked like a golden retriever pup on wheels. We had encouraged her to call the toy Harry, after our dog Henry’s father and also because the name blended in so well with our beloved Henry. I had attached a strong red lead to Harry’s red leather collar and Amy would sit astride him as I pulled her around the neighborhood, much to her delight and the amusement of passers-by.

  I tried so hard that day, saying, “Come on, Amy, sing your doggy song.”

  All I got back was, “Winnie, Winnie the Pooh.” She was normally such a bright, happy child, and everyone marveled at her intelligence, vocabulary, and all the songs and rhymes she knew. Because of Henry and Harry, I had taught her a party piece and she would sing to all and sundry the three verses of “How Much Is That Doggy in the Window?” I tried singing this to her now, waiting for her to do the “Woof, woof” at the end of each line, but nothing happened right up until the end, when she did at least do the last two. My heart heavy, I took a long, deep breath and tried to remain calm until Jamie came home.

  When I told him of my concerns, he said he had also thought Amy had become withdrawn, but like me had put it down to all the problems with my dad. From that day on, in light of everything we had learned with Dale, all sensory interruptions in the house were switched off and all my attentions were switched on to Amy. Jamie was fully supportive and equally determined to do all he could to help her. Whilst deep inside I was petrified to be taking such measures again, I really hoped that she just needed to have my full attention and would soon return to the vibrant little girl she was.

  Day by day, as I had with Dale, I spent every waking hour with Amy, trying to encourage language, play, and engage with her. I involved her in everything I did, from making breakfast to doing the household chores, taking things at her pace. Just loading the washing-machine could take half an hour as I tried to coax one new word out of her. One reassuring thing was that at least Amy’s comprehension was much better than Dale’s and most of the time she was easy to engage with, whereas Dale of course had always been such a challenge—until Henry had a word with him, that is.

  From around May to August 2002, despite all my increasingly desperate efforts, my worst nightmare unfolded as I watched Amy slowly slipping away from me. Her frustrations grew, as did my anguish when I had to witness her tantrums—fists beating her head at full force—or watch as she stood flapping her hands and screaming in distress. There was no denying the reality of what I was once again facing. No matter how hard I tried to prevent it, the horror of autism was engulfing my wonderful little girl.

  Most of Amy’s language had now gone, having been replaced by futile echolalia. Like Dale’s poetry, she endlessly repeated the jumbled and meaningless vocabulary she had left: “Winnie the Pooh, Harry, Eeyore.” At other times, all we would hear being chanted all day was, “Oh, poor Winnie’s stuck in the hole,” peppered with intermittent screams of frustration.

  One day, I could no longer contain my grief and collapsed on to the sofa, distraught. Unknown to me, Dale saw me crying and suddenly he was beside me giving me a big hug. Never in a million years could I have anticipated his next words: “Mum, it’s OK. You’re worried about Amy—you think she’s got what I’ve got. Well, you got me back and you can do it again.”

  With good preparation, Amy started at Madeira, a private nursery with a great reputation that ran drama and dancing classes, which would be good for her physical and social development. On the first day when I picked her up, all seemed to be well. Two weeks later, however, when I arrived to collect her, one of the staff asked to have a chat with me.

  “I just wondered if you had any concerns about Amy,” she said.

  “Well,” I began, “I think she needs some more socialization. She seems to have become a bit withdrawn.”

  She confirmed this, but went further, saying that the staff were concerned that she was not mixing with the other children and her play and lack of language were poor for her age. As I cautiously opened up the conversation and agreed to a speech therapy referral, this pleasant young girl suddenly said, “Don’t worry, we’ve had children here before with autism.”

  Shocked though I was to hear these words, I couldn’t help also being impressed by how the girl had not in any way tried to fudge the situation. I maintained my composure and left with Amy.

  I strapped Amy into her car seat and put on her music tape loudly, to drown the noise as I wept with the agony of my worst fears being realized. I felt the same pain as I had all those years ago when I lay on the kitchen floor at Ashton Road, facing death. What had I done to deserve this? My precious little miracle was afflicted with the same condition as Dale. There was no justice.

  I gradually composed myself. Let’s face it, I knew how unfair life could be and I decided I wasn’t going to be a victim. I wouldn’t care what “they” thought of me; I would fight tooth and nail to help Amy and get her everything she needed and deserved. Autism and “the system” were not going to destroy all we had achieved. I was determined that, no matter what, we would do as Dale said and get Amy back.

  That night at home, we had a delicate family meeting about the situation, including Dale, as he was now fourteen and able to understand. It was humbling to hear him say, “Don’t worry, Mum, I can help a lot—I know what it’s about.”

  We discussed the fact that the speech therapist coming to assess Amy was Grace, the same therapist who had done so much with Dale at Highlanders.

  Dale gave me another big hug. “Mum, it’s going to be all right,” he assured me. “Grace helped me a lot, and she will do the same for Amy.”

  It was ironic that during this horrendous time of our daughter’s autism coming into our lives, Dale was my rock. Jamie did help, but he had his own grief to deal with. We told only Lorraine and Brian, Eleanor, Barbara, and close family about Amy; such was our devastation that we were unable to talk to people without becoming upset.

  Dale alone witnessed the full extent of my anguish and at times smothered me with love and reassurance. Such was his empathy for me that he would engulf me with hugs many times a day. It could be a little overwhelming, but I never put him off, as his love for me and worry for his little sister were so touching.

  I was drained at the thought of having to go through the whole nightmare again, not least because I knew from talking to other parents I’d recently met that nothing much had changed since my time with Dale and parents still had to fight for their children.

  I felt completely alone and overwhelmed with grief and despair. I was unable to sleep, and went to my doctor to get sleeping tablets, but even with combining them with alcohol, I would be lucky to get three hours’ sleep a night. It got so bad that I slept in the spare room as I was disturbing everyone in the house.

  One morning, a really cold, miserable, dark November day, I was unable to face the empty house, so I drove to the beach with Henry and tried to gather my thoughts. Mostly I just wanted to be alone and not risk meeting anyone. I let Henry off the lead while I sat on a large rock watching him wander around, trying to absorb the nightmare of what lay ahead and where on earth I would find the strength to do it all again. I looked over at Henry, who was as solitary as I was, but nonetheless brimming with happiness. I wondered how I would have ever got through this day if I hadn’t had him with me. The solitude, with the empty beach and only Henry as company, gave me a chance to gather myself
and to think, “How could I let Dale, and even Henry down?” This thought alone gave me the strength to fight on.

  A couple of weeks later, Grace arrived, bringing with her another speech therapist who would work with Amy while Grace observed and spoke to me. They could both see she had obvious autistic behavior, especially when Grace tried to engage with her, holding a toy cup in her hand. “Amy, what’s this?” she asked. “Winnie the Pooh,” came the reply.

  I told Grace that although I could see there was much to build on with Amy, there was no ignoring the obvious problem that the little language she had held on to was predominantly echolalic, in that she would mainly just repeat what was said to her, without any real understanding or intention to communicate. This and the other deficits Grace and I discussed meant that a diagnosis of autism appeared inevitable, though this would only be possible after a full assessment and long waiting lists. I was shocked, however, by Grace’s assessment now that, at the age of two years eight months, Amy had the language level of an eighteen-month-old child.

  I spent the next morning frantically calling around to try to find somewhere that could give a diagnosis sooner. I called the National Autistic Society in Bromley, but they had a long waiting list and didn’t accept private patients. I called Yorkhill, pleading my case, and while the nurse was very helpful, she told me they also had a long waiting list and would only see Amy to give a second opinion, if I didn’t agree with an earlier local diagnosis. Once again distraught, I called Grace, saying I couldn’t bear to wait. She was very understanding and fortunately was able to get an appointment there for Amy in a few weeks’ time, in December. I couldn’t thank her enough because I honestly thought I was on the brink of a nervous breakdown.