Iris Grace

by Arabella Carter-Johnson

  One day I had an email from a friend who was involved in a yoga charity in London. They offered special yoga for children on the spectrum and she wanted to know if we would be interested in donating a framed print for a charity auction that was coming up. I thought it was a fantastic idea and jumped at the chance to be involved. We decided on a print of Patience.

  I stayed at home with Iris on the big night of the auction while P-J and my brother attended. There was a drinks reception and P-J overheard comments from the crowd as they saw and read about Iris’s painting. They were blown away; there was so much interest and it achieved way beyond what any of us could have imagined. Iris raised eight hundred and thirty pounds for a wonderful charity that evening. We were so proud of her and the excitement made me feel more confident to spread her story further.

  Over the next few weeks we sold a few of her original paintings, some to friends and a few to some people who had found her on the internet. I was unsure at first about selling them but I knew how badly Iris needed her therapies, and this would be a way for us to get the help she needed. Some we would never sell; they were too special and Iris’s favourites. But she seemed very happy about the idea of some going to other people’s houses. I explained to her that they would be treasured and loved and looked at every day, and she smiled and giggled. The prints were also starting to sell as her story spread and the interest in her art gained momentum. It all seemed quite surreal. To me her paintings were a way for me to connect with Iris and for her they were a way of expressing herself, an incredible gift in itself. I had grown so used to them; there always seemed to be one on the go in the kitchen, but others were seeing a different side: a gifted child who created paintings that soothed their souls. People would describe how they made them feel, the extraordinary effects that her paintings were having on them. Emails started to come in from other parents saying how much it meant to them reading about Iris and seeing her paintings, how it had changed their views on autism, how they now felt positive for the future. Iris’s story was giving hope and inspiration just like P-J had said it would. It was a remarkable feeling.

  In June I agreed to have a telephone interview with our local paper, the Leicester Mercury, to encourage autism awareness. It was going to be a small article, probably hidden away near the back. But when P-J arrived back from collecting the paper he looked shocked.

  ‘What’s happened? Isn’t it in there?’

  ‘It’s there all right.’

  ‘Is it awful?’ I had been so worried about doing it. I imagined that loads of it had come across all wrong.

  ‘I wouldn’t say that, no. It’s brilliant.’

  P-J turned the paper round and put it firmly on the kitchen table. My heart leapt, there was our little Beanie running down her grandparents’ garden path with her cheeky smile on the front page. ‘Top artist aged 3’ said the headline and then the full article was on page three. Within minutes of me reading the article the telephone rang and it didn’t stop.

  I had just wanted to raise some awareness locally, but I seemed to have underestimated things. Within a day Iris’s story would be in all the major national newspapers. Above all I made sure to keep some normality for Iris at home. We tried to keep things as simple as possible: we didn’t want any film crews coming to our home or doing any live interviews. We didn’t want to go on television, but stick to emailed interviews and me sending out photos. I had no idea what to expect or how long it would go on for.

  I tiptoed into Iris’s room, kissed her on her forehead and whispered, ‘I love you.’ She looked so peaceful and blissfully unaware of the impact she was having. I went downstairs and settled in a comfy armchair in front of the glass gable end. It had been warm that day and the garden room was still hot so I opened the door and looked out at the calm beautiful dark sky, just a few stars out.

  The next morning, the telephone rang first thing. I jumped out of bed and ran down the stairs. Iris wasn’t up and I wanted to keep it that way for as long as possible.

  ‘I’m bringing copies, be with you in five minutes.’

  It was my father. I could hardly keep up with his voice; he sounded so excited. I held the phone slightly away from my ear to avoid my eardrum bursting. He always seemed to think he had to speak louder if he was in the car using hands free. It was as if he thought I was in a different country. In fact, he was less than a mile away. He was coming back from an early-morning swim and had stopped in at the newsagents to get the morning paper.

  As I opened the front door he gave me a huge hug and a kiss. ‘Have you seen them? Ahh, our little Iris. It’s amazing, just amazing!’

  I went into the kitchen to boil the kettle and he came in with the bundles of newspapers, putting them down on the table and one by one turning pages to the various articles, shaking with excitement and reading parts out to me.

  P-J came down and we all peered over the papers. In one day Iris’s story had gone from an article in the local paper to raise awareness for autism to national news. I turned on my computer. Emails were coming in by the hundred. Not just media requests but letters from parents, art collectors, teenagers, grannies, artists … It seemed everyone was touched by Iris and her paintings. Every few seconds there would be a ‘ding’: the sound of another email coming in. ‘Ding, ding, ding.’ I madly tried to find the setting to turn that off: the sound was driving me mad, but I couldn’t figure it out without my morning cup of tea. Iris’s story was everywhere, on a global scale. We were trending online and the telephones began to ring again at 7.45 a.m. and didn’t stop.

  P-J took my mobile, his mobile and the house phone and worked from his office to handle all the calls, while I was on email duty. Invitations to be on television and travel the world came flooding in. Everyone was enthralled by Iris, the three-year-old girl who didn’t speak but who painted like an Impressionist. But the complete lack of understanding of what living with autism was like had never been more clear to us. This was what had inspired me to open up more about our lives in the first place, to show what Iris’s life was really like through her Facebook page. We had a chance to make a real difference. My theory was that if people could understand Iris and why she behaved the way she did, and over time fall in love with all her eccentricities, then they would start to care about her and celebrate her achievements. Then, when their paths crossed with somebody else on the spectrum, they would be kind and understanding about behaviour that was maybe unexpected or different. It would be fantastic for people to look past the disability and see potential. I wanted them to look beyond a diagnosis, to see that difference is brilliant.

  But I was also determined that under no circumstances would Iris’s life change, so whatever I did it needed to be from home and to fit into our normal routine. It felt like I was finally on the right road with her and I didn’t want any more setbacks. For instance, I would only read emails and letters from parents from around the world when Iris was busy playing in the garden. They were often incredibly moving and I no longer felt isolated or alone: thousands felt the way I did and expressed their gratitude for us sharing our story. For parents who had just received a diagnosis for their child, reading about Iris seemed to give them hope. It was a powerful gift and I was so proud of our little Beanie.

  Water Dance, acrylic, June 2013

  As the weeks went on it was clear that Iris’s story would continue to spread – it seemed to have a life of its own, a community that was growing through her Facebook page. We made the decision to manage it ourselves as best we could. We didn’t want an external art agent, although there were many offers. We wanted to keep control of it all to protect Iris. At times I did struggle. I worked late into the nights to keep up with the flow but reading those emails made all those long hours worthwhile. The effects that Iris’s paintings were having moved me to tears. One lady told me how she would visit her mother who was bedbound from her condition and that she had suffered badly from depression. After seeing Iris’s paintings she felt joy and comfort. They
had changed her life for the better, brightening up each day as she read about Iris’s adventures. Her paintings weren’t only inspiring those who were affected by autism; they were touching the souls of millions for many different reasons. Her story reached people in over two hundred and thirty different countries. Some said she reminded them of their happy childhood, others that she painted like Monet and many simply enjoyed looking within the paintings and telling me what they saw.

  As the paintings themselves began to pile up on my desk I realized that we needed to find a better way to store them. ‘How about using my plan chest? You know, the one I used to store drawings in. It’s just in the stable now with all the flower-arranging equipment piled on it,’ my mother suggested. I thought it was a fabulous idea and we made arrangements for it to be brought over.

  This meant that there was movement in the house. Iris shifted under her duvet on the sofa and started to cry at the sound of furniture being pushed across the floor. Change in the house still unsettled her. She had got used to all the obstacle courses, but the furniture generally stayed put and that, in her opinion, was how it should be. I went to comfort her but her look told me that I should back away, so I got the rest of my office ready for the new arrival.

  We got the chest into position under my desk without too much trouble and I went about cleaning and preparing the drawers. This was the new home and protector for Iris’s paintings: a plan chest that had been passed through my side of the family, the guardian of architect’s drawings, photographs and now paintings by our dear little Iris Grace. I carefully positioned each painting inside and covered them one by one with layers of tissue paper, then shut the drawer to fill another. The whole chest was then draped with a red velvet throw that covered the peeling paintwork and out of the corner of my eye I saw Iris tiptoeing quietly in through the door. I gently opened the drawer again, exposing the painting on top: Cinnabar, a bright red painting with splashes of green. The painting enticed Iris towards the chest. As she looked, her agitation disappeared and was replaced with curiosity and delight. She placed her hand on it, gently patting it, and then gestured for me to push the drawer closed. She moved along the front, feeling the handles and kneeling down so she could feel the texture of the wood and metal on her face, then she climbed on top and laid across it like a cat, sprawled out and perfectly relaxed. She understood the intruder’s purpose and it had been accepted into her world.

  Iris was content at her table, busily painting, when my mother arrived one day with some lunch for us. As she put the casserole dish on the table she turned to me. ‘Where’s the pink spoon?’ she whispered. ‘Has she lost it?’

  Cinnabar, acrylic, September 2013

  ‘No, just doesn’t need it any more. Brilliant, isn’t it?’

  The little pink spoon had been a friend to Iris like no other. It had been a year-long relationship that had endured bath times, activities and even the tiresome process of slipping through sleeves – tricky but possible. Nothing apart from deep sleep had broken this bond. The spoon hadn’t been the first item that Iris had got attached to; there had been a long line of objects that had been carried constantly in her left hand. But the spoon had had the longest reign. Then, all of a sudden, I had been handed her beloved like a golden chalice: she wanted me to take it and look after it for her. I had found a drawer in the kitchen where I placed it and she had been checking in now and again. To us, it was a symbol of her new-found confidence and greater sense of security, a sign of progression and independence like no other. I was sure her pink companion wouldn’t be forgotten and it would be there for her when she needed it, but nothing else had replaced the spoon. For the first time since she had been able to hold on to objects, her hands were free – she was free.

  Throughout the summer we balanced our lives so that as much time as possible was spent outside in the garden for Iris’s education and her therapies. The sessions were going very well with Iris blissfully unaware of any stir she was causing in the outside world. On days when the weather was good her therapy would be taken outside and as I watched my heart sang. The joyful interaction between Iris and her music therapist made me smile as I moved quietly away. Iris was at ease playing the piano when she felt like it, but she was always more interested after her music therapy sessions. Her paintings hung all around and family photographs rested on top. From the stool she could see our garden through the floor-to-ceiling glass gable. The huge expanse of sky, the bank of trees in the valley and the rolling green hills beyond were an ever-changing landscape. There was pink apple blossom in the spring, green leaves dancing in the wind through the summer and an explosion of colour in the evening light throughout the autumn. Iris watched as birds swooped through the valley, following their flight, then spreading her arms wide with a long white feather in her left hand she would gracefully imitate their journey dancing around the room.

  ‘I’ve been thinking,’ I said to P-J as he came in.

  ‘Yes …’

  ‘Don’t worry, it’s nothing massive. I know we’re busy right now, but I wanted to come up with something that we could do together as a family, something outside. But I can’t decide what to do. You know how relaxed Iris is in the garden … Well, why don’t we try to widen that to somewhere else? I worry that she’s too isolated here. Any ideas?’

  ‘How about going out on bike rides?’

  ‘I thought of that but she’s no interest in learning how to ride a bike. She hated that tricycle. Makes me a bit sad really. I loved riding around the countryside with my father.’

  ‘No, I meant me taking her on my bike. I could get one of those seats that goes behind mine. That way she will be able to see the countryside and not have to worry about riding. It will be relaxing for her. Well, hopefully …’

  With that decided we went in the next day with Iris to several bike shops, for a bike for me and a seat for her. It was stressful as Iris just went running off exploring, inspecting the most dangerous items in the shop. Our first bike ride was a little tentative, not knowing how Iris would react to such a new activity, so we paired it up with some music playing from P-J’s iPhone that we knew she loved and hoped for the best. With Peggy Lee at full volume she immediately relaxed just as she had when she had first heard her voice. It had been a few months earlier that my father had been to an antiques market one Sunday morning before one of our lunches and brought home some CDs, one of which was Peggy Lee. He played it for her and she danced around the room on her tiptoes while she listened to the happy tune. The cheerful lyrics followed us down an old railway track and across the countryside, along canals and through the villages. Peggy soon became as much a part of our lives as Iris’s books, being there for Iris when she needed a helping hand. Iris loved the bike rides from that day on and they became part of our routine.

  Riding behind P-J I could see Iris ahead, her body leaning forward in the slipstream of her father. She looked at the countryside, the waves on the reservoir, trees and birds. She studied everything wide-eyed, with squeals of excitement and her hair flying in the wind. Every so often she turned to me with a smile that was so infectious that I immediately smiled right back at her. We talked to her on our journey together: ‘Moooo, goes the cow’ if we saw some cows in a field, for example. We hoped with all hope that our words were sinking in, but we knew that it might not be possible due to there being too much visual stimulation and sensory input. In traditional speech therapy you aim to have the child’s undivided attention and to be in a plain room with just a few toys/activities that you are both focusing on. There is lots of repetition, encouraging them to say words like ‘more’ to get the toy. Out in the open countryside with fields and woodland to her right and water on her left, we couldn’t have been further from that situation, but somehow it was working. On our journey home in the car Iris spotted some cows in a field and said ‘Moooo, Moooo’ repeatedly without prompting. She had listened and understood and now used the words in the right context all by herself. It seemed we had found an in
teresting combination therapy: painting for peace and relaxation, music for the soul and freewheeling speech therapy on the bikes. I wondered what would be next.

  Connecting and interacting with a child with autism can sometimes be like tuning into a radio, but once you get through the whirring fuzz you are there, clear as can be. It might only last a few seconds but you have it and my god as a parent it feels great, emotions flying high. Two little words from Iris after a bike ride – ‘bye-bye’ to the bikes as we put them away – helped me forget my tired legs, and filled my heart with joyous pride. Words up till then had only seemed to come sparingly when she was happy and relaxed and doing some sort of activity, playing in the garden, drawing, painting, listening to music, but now we had found another ‘spark’ – the bike. Iris riding on the back of PJ’s bike, hands stretched out, feeling the wind, free from worry, didn’t fret about her dress and cardigan or worry about things having to be in order and under her control. This sensation seemed to unlock something, so that a word could find its way out.

  But there was something creeping up on us that I couldn’t ignore any more and that was the decision about which school Iris was going to attend. She was due to start in September and we needed to find a suitable place. She would be young for her year but after speaking to some of the head teachers and describing where we were at with her, they felt it was the right time. I was fearful of what was to come as we had once again made so much progress and for that to be destroyed would be heart-breaking. Iris was proving to me how much she was learning in this gentle natural environment and I was nervous about what a school would do to this.

  Finding a suitable school was one of the hardest challenges I had to face. I mostly went alone to visit them while P-J looked after Iris, but I couldn’t see us sending Iris to any of them. In the eyes of the schools and teachers, having looked at Iris’s diagnosis reports and listened to where she was in her development, she couldn’t be placed in a mainstream school as it would be too much for her. I agreed with that. So that left the special schools that were dotted around the counties surrounding us.