All Because of Henry

by Nuala Gardner

  Once more, he came home stressed and anxious. He handed me applications for jobs he had been told were “compulsory”. One was a full-time position, based twenty miles away, from 7.45 in the morning to 6.15 in the evening – for the minimum wage. Another was also twenty miles away, inaccessible by public transport and with disastrously long hours.

  We were despairing. Then, a couple of weeks later, he returned with the perfect vacancy, albeit a temporary one. Twenty-one hours a week, just fifteen miles down the coast road, a familiar bus ride away in Largs. He phoned Prospects. The next day they called, asking to speak to me first. The caller had been twenty-eight when he had been diagnosed with Asperger’s syndrome; I knew him well. His voice was unusually hesitant. He’d spoken to the nursery head and had tried to explain Dale’s autism, and how Prospects could support him and their staff. Before he was able to make his points, the Head assumed it was a hoax call! Prospects’ advice was that as the Head appeared so unsupportive, his application was already doomed. Sadly, we had to agree; maintaining Dale’s confidence was crucial. I tried to be diplomatic when I explained the situation. He was saddened, but he understood.

  Something heartening was about to pop through the letterbox, however. Autism Scotland, the biannual NAS newsletter, had a cover showing a painting donated by the artist Peter Howson for the Auction for Autism. Other prestigious Scottish artists with a spectrum connection were also donating. The money raised would go to Prospects.

  “Mum, do you think someone would buy my portrait of Henry?”

  That portrait took pride of place in our hall. Tucked in the frame was a card, signed by the After Thomas cast: Keeley Hawes, Ben Miles, Sheila Hancock, Duncan Preston and young Andrew, who had played Dale. While I treasured it, I had taken several copies, and his gesture was fitting. What support Prospects had given him! Then I remembered another special piece he had drawn when he was eleven for the Project Ability exhibition at GOMA, as part of the Artism Europe Exhibition in summer 2000. This was a large pastel portrait of a friend’s cat. Viewing it, many were struck by the array of colours, and how he had captured the texture of the cat’s thick, fluffy coat. The eyes stared out and its posture suggested it was ready to pounce from the frame. Having caught the essence, he proudly named his work “Furry Cat”. Not only that, but I had a copy! I retrieved it from the attic and our beloved Henry’s wall space was filled.

  The auction was held at Glasgow’s grand Mitchell Library. The auctioneer opened, bidding was slow and because of the recession, sums raised were unusually low. Bidding for “Henry” began. My heart raced. An NAS supporter paid £300! Next was “Furry Cat”. Surprisingly, a bidding war broke out between two people. The new owner paid £150. She was a cat lover who taught autistic children. Dale was moderately autistic when he drew the cat, so he hadn’t signed his work, as it might have caused him confusion, “spoiling” his picture. He simply wouldn’t have understood the concept. Times had changed. I fought back tears when the new owner handed Dale a pen. Boldly, he signed his name across the back of the frame, ten years after its creation!

  The phone remained silent for supply work, but there wasn’t time to dwell on that, as Dale and I had a prestigious event coming up. Another gift from Henry. I was to be guest speaker at the Sheriff of Chester’s annual fundraiser, where the public joined him to enjoy a hearty breakfast, all for a £15 donation. Coincidentally, the Sheriff owned a beautiful chocolate Labrador called Henry and had been touched when he read our story. The proceeds were being donated to Hinderton School in Ellesmere Port, whose thirty-two pupils were at the moderate to severe end of the spectrum.

  On arrival at Chester Station, I was pleasantly shocked! We received a civic welcome. The Sheriff donned his robes and chains, and a red carpet led us to the formal car. The friendship and hospitality we received made us feel like VIPs. That evening, the Sheriff and a close friend joined us for a lovely meal. Throughout the night, his empathy and understanding was affecting, and he shed many a tear over Dale’s shared tales.

  The next morning we went to the Guild Hall breakfast. We sat at the centre table with the distinguished guests. Dale took it all in his stride, as many approached him to talk and to shake his hand. What an ambassador for autism!

  Meanwhile, I pinned up pictures of Dale growing up with Henry and Amy. I had a talk to give. I could hardly eat, but once I’d started my presentation, I delivered with confidence. I had the audience in stitches as I waved a cuddly dog (I always seemed to have a pack with me now!). They asked challenging questions, and I replied to them all. At the end, I presented a framed copy of Henry to the Head of Hinderton School. Hodder and Stoughton arranged a book signing, so we were all able to talk informally.

  Later, the Sheriff, with the “freedom” of that beautiful, historic city, took us on a morning tour. In the afternoon, we visited Hinderton School, to be met by Julie, the school office manager whose son has autism. We got on immediately! The school had NAS accreditation, indicating it provided a high standard of condition-specific education. The Head showed us round. There were five classes, defined by colours – blue, yellow, orange, green and purple – helping pupils identify their age and stage. Every purpose-designed classroom included a quiet room. Activities and lessons were similar to those at St Anthony’s and Struan School (Scottish Autism’s provision) and there was a 1:2 staff/pupil ratio. Ideal.

  The relaxed atmosphere permeated the whole building. Artwork displays were restrained and there were awards charts and PECS for each pupil on show.{1} PECS is short for a ‘Picture Exchange Communication System’, which is commonly used to help children with communication difficulties express their needs via pictures. For example, a glass of juice is shown to indicate they want a drink. The same method is used for other basic activities of their lives.

  The Head explained the school’s ethos was child-centred, with sensory integration to the fore. Each child had an individualised sensory profile, drawn up by an occupational therapist. Finally, we were shown a small room littered with old mats on the floor. Really, it was unfit for anything. If the breakfast raised enough, the Head hoped it could be an Acqualia Room. Such rooms provide quiet, calming sensory stimuli and a positive environment, using soft-coloured lava and bubble lamps. There are fibre-optic lights which change colour when touched. The children lie on mats with reassuring auditory stimuli, like waves or whale noises. Pleasant, subdued olfactory experiences may be added. The room gives those with acute anxiety time out and emotional respite, promoting recovery and minimising the possibility of their distress escalating. This would be a vital resource for one-to-one therapies.

  The Sheriff had another engagement, so we bade him a fond farewell and thanked him for everything as we went on to attend the school’s weekly assembly. Two weeks before, I’d sent a picture of Dale with Henry and me, so the children would be unfazed. Although Henry’s portrait would be hung in the school’s reception, Dale suggested getting thirty-two A4 copies made. He signed every one, so each child could have a memento. The Head suggested he give each child their picture individually, rather like a prize-giving.

  The assembly hall was set up before the children entered. We sat beside the interactive whiteboard so the children could see us. The chairs were arranged in a semi-circle, in natural light, and soft music played as the classes filtered in. The majority sat as any would, while others displayed autistic behaviour – hand-flapping, rocking or verbal tics; a few wore ear defenders. One child entered last, cautiously holding his teacher’s hand. The pair sat apart, beside the open door. I couldn’t help but notice how few girls there were. Statistically, four boys to every girl are affected. While the noise was somewhat different from the “average” assembly, when the music stopped, the head teacher stepped up.

  “Children, good afternoon!”

  The staff and majority of pupils replied. He displayed our pictures on the whiteboard, reminding them that we were here to see them. After he had dealt with the usual school business, he introduced me
. My heart sank. I was caught, unaware and unprepared. I took a deep breath, grabbed the bag containing the cuddly pack and began: “Children, I think your school is really good!”

  I told them that, like Dale, I liked dogs. I also liked their blue school jumpers. Then I produced the toy! To their delight, I pointed out its blue collar. “Does anyone know what a dog needs?”

  Immediately, hands spiked the air. I chose one excited little boy, who shouted, “Dinner!”

  I gave him a Makaton thumbs up. “Yes, dinner. Well done!”

  Producing the metal bowl from the sack, I then worked through all the equipment, telling them I was giving their school the pack. I left them to name the “dog” and put their school badge into the key ring fob, letting everyone know it was Hinderton’s. The Head then explained that Dale also had a gift. One by one, each child came forward to receive their picture. Dale leaned forward to be at their eye-level. With a quiet, calm voice, he said, “Hello Tony, I hope you like my picture.”

  Everything progressed beautifully. I was so proud.

  At the close of the assembly, the Head asked if anyone wanted to ask anything. Hands flew up.

  “What was good about having a dog?”

  Again, my son surpassed himself. He looked at the boy, repeated the question, so everyone knew what was being asked, and said, “I got Henry when he was a puppy. He made me happy, like a friend, and we grew up together.”

  The assembly finished with the children singing for us “Going to the Pet Shop”.

  As the purple class filtered by, one little boy left his group and approached Dale confidently. “Can I get another copy for my mum?”

  Dale told him it was a good and kind question, and directed him to the Head, who reinforced that it was a good idea, and promised him a photocopy. What a school! Sadly, not all children are as fortunate as these pupils. It was a privilege for us to witness at Hinderton, condition-specific education at its best.

  A couple of weeks later the Sheriff called, with news. The Acqualia Room funding target had been reached! “Ripples from your visit are still going on. I hear your presentation was emotionally electric.”

  I thought it couldn’t get much better. Then, the postman arrived with a card: “To Nuala and Dale, thank you for the picture of Henry. I am buying a frame for it, to put onto my bedroom wall. From Tony, Year 4 Purple Class.”

  Soon afterwards, it was followed by an email from Julie: “Our pupils are very fond of the dog [. . .] he often disappears to various areas of the school leaving his basket empty [. . .] Staff have asked me to enquire as to the supplier of the dog to see if we could perhaps purchase another!”

  Henry had truly made his mark in Ellesmere Port! Once again, I had that tingle, that sensation that something was happening, and part of my life, at least, was going somewhere very interesting indeed. “Career” wasn’t the word, at least not yet. Time would tell on that. Maybe “vocation” said it better. I couldn’t be certain, but I did know I was being taken on this walk into a new future . . . and I liked it, very much.

  Back in Inverclyde, while Dale waited for supply, he continued with his Barnardo’s drama group and helped out at their Easter Holiday activity group. I carried on working two night shifts a week as a community staff nurse. Holding down my job with the pressures of family life was no one’s idea of an easy ride, but I loved it. The extra money gave us a good lifestyle, but more importantly, it meant I wasn’t just a mum. I had some other kind of identity and a separate social life. But I had to admit, I was beginning to feel burnt out.

  Community Nursing had merged with social work, so my responsibilities had increased, but I had coped – just. I felt I had no alternative but to keep working, despite my soaring stress levels. Now, however rewarding, holding down my job became one straw too many. For the first time in my career, I went off on long-term sick leave.

  Thankfully things were good with Dale. At last! The phone call he had been waiting on! He was to start work, covering a full-time post with a preschool group until the end of term . . . immediately! Excitedly, he asked me to accompany him into town to help him buy new clothes for the job. Whilst I was pleased, I was intrigued. He had, after all, been purchasing his own clothes for two years. We started in Marks and Spencer’s, a great favourite of Dale’s. Browsing through the polo shirts, he announced, “Mum, I want five different colours. Will you help me choose?”

  “Five, Dale? That’s a lot. Why?”

  I was astounded by his reply. As staff would be aware of his autism, he wanted to prove his professionalism by wearing a different coloured shirt each day. Not only would it be clear that his hygiene standards were high, but the children would learn colours and sequencing. However, his next words left me saddened: “Mum, I’ve learned that because people know I have autism, I have to prove how much I have beat it, so people don’t see me with autism all the time.”

  I reassured him. The scenario was unfair, but his thinking realistic. He bought green, sky blue, red, black and royal blue shirts and some chinos. He was ready to start. A couple of days later, I had an unsettling thought. Would I work, unprotected? What cover did he have, in today’s world? I advised him to join a union. Hopefully he would never need it, but having studied the workings of trade unions at school, he agreed. Far better to be safe than sorry.

  On his first day, he was back into his routine, arriving fifteen minutes early, wearing the colour of the day. Generally, he didn’t finish until 4.30 p.m. or later, but he fitted in well. I was pleased; he could relax at home. He kept up the same pace of social life and, faithfully, he continued karate every Wednesday. I was worried how he could keep on his Barnardo’s group on Thursdays, because it started at 6.30 p.m. He was hardly home before he was heading out the door again. He didn’t mind . . . but I did!

  I was concerned that he might overload himself. The fragile state of my own health was proof of the risks, and that was without my having autism. So, I picked him up for his drama after work. We grabbed two large cappuccinos and muffins to go, and had an hour’s chat before the group started.

  Everyone was delighted to see Dale working, especially me. I knew he was managing the workload, paperwork and all the responsibilities that being full-time in a busy nursery brought. He had to prepare his group of children for starting primary. Staff were supportive and he flourished. Parents thought highly of him, especially those with children going through the assessment process for ASD. They would talk with him, comforted, seeing how far he had come.

  One day he came home from work and I couldn’t ignore his upbeat manner. “Dale, what’s the cause of your good mood?”

  “Mum, I can’t tell you because of confidentiality.”

  Hmmm! I advised him that if he didn’t give names, he could describe a situation, using words like “parent” or “speech therapist”. He could even change a person’s gender. Pausing, he began, “Mum, remember the head teacher at Highlanders’ Language Unit, who helped me a lot when I was first diagnosed?”

  “Yes . . . Irene.”

  “Today, I was working with a group of children. Irene was in the nursery and I was to carry on as normal with the group, while she observed one of them. Afterwards, she spoke to me, and said I was a natural ‘teacher’ with the children, and I had done a really good activity with them. It just meant a lot to me, coming from her.”

  I was delighted for him and couldn’t help but wonder how Irene must have felt knowing, if it hadn’t been for her determination and her belief in him back in February 1991, neither would have met again eighteen years on. He continued to thrive, as did his charges. At the end of term, he was captured in a super picture, standing proudly with his class; all were wearing their specially made mortarboards. Very much part of the team, he joined the staff for their end of term lunch.

  All was well, and the difficult journey was now worth every painful step. His dream was a reality. His only barrier was finding a suitable permanent job with manageable hours. But hey! His career had begun a
t last!

  10

  Colours of Autism

  “The longer a child with autism goes without help, the harder they are to reach.”{1}

  Sometimes, I wished I could have thrown it all up in the air, pitched a tent and blasted my ears out at T in the Park. I could have rolled in mud, danced, anything . . . anything but this. There was my hand, back in my bag, back in the bathroom medicine chest. I had a bottle of pills at hand, inside and out. Again. I could find them with my eyes closed. Again. Again. Thank God Dr Grose was so vigilant. I was a wreck. I suppose not working helped to some extent, but the hoped-for respite was constantly undermined by guilt. Not earning was harrowing, and Jamie was stressed too as he tried to adapt. Royalties from Henry helped salve my conscience, but not quite enough. Somehow I got by, and I could just about imagine that I even enjoyed the normality of having time to run the household. In truth, supporting two kids with autism and being on tap for others going through their own spectrum crises more than filled my days. I don’t know whose time I was on. Certainly it wasn’t mine. Yet, there was one call I needed to make.

  I hadn’t spoken to my cousin Laura for ages. Her daughter, Katy, had just turned two. As they lived in the Highlands, our contact was sporadic. At last, I picked up that phone.

  “Oh, Nuala. Good to hear from you . . . I was actually going to call you.”

  Something in me knew that, already.

  I first met Katy when she was only three months old. A family baby! What a lovely excuse for a visit, to have a weekend break, and hey, even throw in an outing! We booked into a hotel, to give Laura space and make the most of our own wee family holiday. She was isolated and needed a break, so I offered to take the baby out for the day, when we visited the Loch Ness Monster Exhibition. Amy was seven, and it had been a quarter of a century since my midwifery days, but it was fun to have a wee one in tow again. For once, the weather was beautiful, and the gardens bustled with families. Katy loved the car ride; we hardly noticed we had a baby on board. She sat wide-eyed, staring ahead, but blankly, and there was never a whimper, nor hardly a muscle twitched in that seventy-five-minute journey. There was no air conditioning, and though I tried to offer her a drink, she was so content and, despite the heat, she ignored my attempts.