Iris Grace

by Arabella Carter-Johnson

  It was exciting to see how this growing community was helping others understand autism and I was very grateful for their interesting insights. One comment stuck in my mind: ‘Our imagination is stronger. We can see inner films and hear music, meaning that we may drift away if something fascinates us.’ This explains many phenomenal autistic talents. Such intriguing revelations into the world of others on the spectrum were allowing me to understand Iris in ways that I couldn’t have imagined.

  At this time I wanted to introduce some techniques that as Iris grew older she could use herself whenever she might need to self-regulate. So, in addition to Iris’s other therapies, we were also having weekly yoga sessions. Though they were not always successful with regards to Iris joining in, she did always watch and I found that she was using the postures during the week by herself. On good days, though, she would participate and it was a remarkably effective way to improve her social skills. She would correct P-J’s position, then climb all over him while I tried to concentrate on what I was doing and not laugh. P-J would try his best to stay balanced with Iris hanging off one leg. The yoga helped me in many ways too; it improved my ability to refocus when things were not going to plan, to breathe. I always had so much running through my mind and focusing during yoga helped me immensely. It was also helping with the back pain from my horse-riding accident and I found I no longer needed to see a chiropractor.

  What surprised me was how quickly Iris made a connection with Kay, our yoga teacher, and the ways she interacted with her. Iris was so relaxed, smiling at Kay with wonderful eye contact and allowing her to come close and help her into the next pose, her body flexing into various positions. It was fantastic for her mind to concentrate on the present movement. What was planned as a short course of six weeks became part of our week.

  Without trying to control everything there was a pattern forming. Our weeks filled and life seemed to be jam-packed with new and exciting activities. We loved the freedom of being able to use the good-weather days and take spontaneous bike rides when the sun shone or walk in the woodlands. I had never looked at home education in that way before: I had seen it as an alternative to the special schools that weren’t suitable: the only option left. It had made me elated but worried at the same time – it was such a serious commitment and a heavy responsibility. But now I was able to embrace the unexpected freedom and all the potential that our situation provided. It was an ironic twist in events when you think about it. Autism usually sits side by side with tight visual schedules and prompts, predictable routines and a firm structure, but Iris was starting to thrive on something different. She was beginning to relish unfamiliar environments and enjoyed exploring them as long as we were considerate of her sensitivities. These new experiences spurred on her language and other skills. We would see her light up just as she did when she painted.

  I knew we had to keep moving on. All our efforts meant that we were teaching Iris the basic skills in social communication that others pick up naturally, and having fun along the way. But it wasn’t enough. We wanted to open up her world to others, encouraging her to interact with her peers, to see that it was OK to be around other children and that it could be fun. Finding a suitable children’s club for Iris was another problem that didn’t seem to have an easy solution. Although Iris’s relationships with adults had improved and she was able to play and interact, she was still nervous around other children. I feared this would never change if we didn’t step in. How could she learn and practise those skills if we weren’t providing opportunities for her to do so? The tricky part was how to introduce her to other children. We had tried play dates and they had never worked: Iris would just hide away with her books upstairs or cry if I asked her to stay. She was still very nervous in public spaces that were busy with lots of children. All it took was a baby crying or a child running chaotically past her and she would cry in my arms and lean and pull me towards the door to leave. We needed to move slowly and gently on this issue if we were going to get anywhere.

  We were moved by a story from an inspirational mother in America who had started her own children’s club for children on the spectrum. P-J was convinced it would work if we created our own too. ‘It will be easy,’ he said in his usual jovial manner. Whenever I heard that phrase from him I knew it would be far from easy.

  The plan was simple in theory: an autistic-friendly club based at our home, where parents could stay and enjoy activities with their children in an understanding environment. Of course there were concerns about opening up our home to strangers, but I had made some connections with other parents through the autism courses that we had been to when Iris was first diagnosed so they were first on my list for new members.

  We started off small, with only four children. Iris had been very interested in all the preparations I had made for our first session. We had named the club the Little Explorers Activity Club and I wanted each week to have a different theme. To start off with we went for a sea theme. At first it took some getting used to for all of us. Iris, in particular, wasn’t sure what to do or how to be around the others and found it tiring. She was excited and intrigued by the decorations but that seemed to be the only reason she stayed in the room. She found noises from the others and their unpredictable nature difficult to handle and stayed as far away from them as she could while still still being able to explore the activities. After about half an hour she needed to have a break and she went upstairs. I couldn’t help but feel disappointed when she needed to leave; the amount of effort I was putting in meant that when things didn’t go to plan I didn’t know what I was doing any of it for. Then I would remind myself that this wasn’t ever going to be a quick fix – it would take time and I needed to be patient. It was the same for the other children too; they were allowed to explore the house and find their own quiet area if needed and that worked very well. I started to see that I would need to create more fantastical and inviting worlds if we were going to succeed in getting them all more engaged with the sessions and that the club would need to run regularly, every Saturday morning even through the holidays, to give stability and to build on relationships.

  As each week went by Iris was able to be with the others for a little longer. Some weeks I felt like she was regressing: she would cry before the other children arrived and wouldn’t come downstairs at all. Then the following week she would be fine again and enjoy herself. But at about six weeks in a change came over her. For the first time ever, Iris was waiting in anticipation for the other children to arrive. She was looking forward to it and rubbed her hands together as if to say ‘I’m ready, bring it on!’ It was a welcome change. Was the plan at last working?

  Splashes of colour, shapes of stars, planets and a rocket were projected on to the walls from black card with cut-outs fixed on to the glass panels. Thula was convinced she could jump and catch the coloured delights on the walls and made joyful leaps from the dresser, which made Iris laugh as we waited for the others to arrive. I heard Iris say ‘star’ from the kitchen. ‘Well done, Iris. Good talking,’ I called out.

  With African lullabies playing in the background, the morning was filled with making star biscuits, trying space food and jumping from the trampoline into a pool of balls, teddies and beanbags. And Thula wanted to be included in everything, especially when it came to cooking. The following weekend the kitchen was filled to the brim with miniature Italian chefs all busily squishing, pulling and kneading their balls of dough. The Italian-themed activity club was in full swing. The house was decorated with vines hanging from the wooden beams and a sea scene on the window with fish, seaweed and seahorses. Maps of Italy and flags provided an interesting game for James who wanted me to find particular countries in less than ten seconds. A seven-year-old boy with suspected Asperger’s, he was verbal but had confidence issues and relied heavily on his mother. His behaviour at the club was normally fantastic but I listened to his mother as she described how when he experienced sensory overload the more challenging behaviour came to lif
e. I had a soft spot for him; he latched on to me during the cookery sessions and I saw his passion grow. The more he could experiment in the kitchen, the more confident he got. His mind was inquisitive but he didn’t know or understand the boundaries within social situations and often went beyond what is considered appropriate.

  He would ask me what I was going to have for my lunch after the club.

  ‘Sausages,’ I replied.

  ‘How many?’

  ‘Uummm, two.’

  ‘How many will Iris have?’

  ‘Probably just one …’

  Then he went on to ask about the potatoes, what sort of beans, what we would do after lunch and what we were going to have for the next few meals. I think he wanted to imagine what things would be like after he left.

  There was another reason why this boy meant so much to me: his connection to Iris. He was so gentle and kind around her, always trying to include her whenever he could. Iris liked him too. He was older than the others, quieter and more predictable.

  The pizza-making in the kitchen had lifted everyone’s spirits to a great height and the bursts of laughter at our cookery attempts made me feel so happy. Our club was breaking through the isolation that autism had brought upon us all and as I looked at Iris I couldn’t believe the changes.

  James carefully stretched his dough into an oblong shape. ‘How do I get the right shape?’ he asked in an agitated voice as he frowned at the ever lengthening piece of dough between his hands.

  I showed him with mine how to shuffle it around to create a circle but he decided that, in fact, the oblong was by far the best way to go. His brother, Charlie, had already whizzed ahead on to the pepperoni while his mother valiantly tried to spin her base on the very tips of her fingers.

  She grinned at me, then with the dough safely back in her hands she whispered, ‘I can’t believe it, look.’

  As I looked around the kitchen my heart filled with joy. She was right, every member of the group was present, a rare achievement. ‘They’re all here,’ I said.

  ‘Brilliant, isn’t it?’ said Oliver’s mother with a wide smile.

  I didn’t care about the mess or the fact that Iris had decided I was the new way to get her fingers clean, turning my clothes white with flour. We were achieving something great. For most families it would seem insignificant but for us it was spectacular.

  ‘Oh, Thula!’ cried Ed as she darted under the tables and chairs playing football with some fragments of dough, and then our cheeky cat created a new game of batting anyone who passed her way. She was kind to the others but not quite in the same way as she was with Iris. She was more boisterous on occasions and managed to deal with the boys playing with her and all the attention. She responded to each child in rather a different way; some she would play hide-and-seek with, while with others she stood still while they stroked her. I wondered if she knew how to be by instinct and wished so much we could open ourselves up to those feelings as well as animals still could, how much easier life would be if we just knew what to do and didn’t question ourselves.

  Oliver calmly sat on his mother’s knee as they worked together on his delicious creation. To watch him so still and concentrated was a rare sight. After the first batch there were only two chefs left. James adorned his pizza beautifully and Iris stayed with the dough itself, enjoying the texture, patting, stroking and moulding it into different shapes. I heard her hums and little noises, a show of contentment. James talked every now and then to Iris but he didn’t mind that there was no reply.

  The plan was working – granted it was only for small fragments of time when all the children were engaged in the activities at once, but it was precious for every family. Later the group dispersed. Iris had retreated to her sofa with her new best friend, a rather aging piece of dough that now resembled the skin of an elephant, and in no time at all Thula was curled up sharing her blanket.

  But the following Monday I looked into Iris’s watery eyes and I could see the familiar distant gaze I had hoped I wouldn’t see again. The one where she wouldn’t look at me, rather through me, and it was impossible to connect. She could stay like this for hours or days. With her face suddenly drained and pale I knew right away that life had got too much for her and she was retreating into her world where she had spent so long alone. It had been easy to forget Iris’s autism lately with Thula’s help and all the highs that came from her paintings. She had been doing so well, but with the excitement of the club and a social Sunday with family the day after, it had become too much.

  She pointed at the lamp on my desk. I turned it off, then I saw her body curl up on the sofa with her legs tucked in and her head down. ‘Iris, hold my hand,’ I said quietly. She took my hand and I carried her up the stairs with her clinging on to me. With our arms linked we lay side by side under the heavy duvet for a long while in silence and she gradually relaxed. She turned towards me, looking into my eyes. She was coming back and her senses were calming. Thula joined us on the bed, snuggling up close to Iris, instinctively knowing that she needed her there. As she stretched her paw the long tufts of soft fur brushed over Iris’s tummy and I heard her giggle. Once again Thula had found a way to lead Iris back into the light.

  After that I began to adjust our lives to fit in more relaxing periods after the club or social events. I made sure that we wouldn’t overwhelm her, but to gradually build on what we had achieved. It was going to take time but we had plenty of that; there was no need to rush. A new ritual began: after each activity club we would take Iris for a drive so she could settle down and have a snooze after all the excitement. It gave her a chance to relax with Thula curled up on her lap and by the time we got to the hillside with the bluebell wood they would both be fast asleep.

  With some new funding in place for the club it was time to find some more activities. I wanted to give our Explorers every opportunity possible, to inspire as well as build on their existing fascinations, gently widening some of their more fixed interests. My passion for the club grew from week to week and although this project started out as a way for Iris to spend time with other children it became so much more. It became a safe haven for the parents attending and a magical world for the children. I adored creating themed kingdoms for them to explore, from rainforests with foliage from the garden to sea themes with painted cardboard boats and seas of blue sheets and towels. There was always an abundance of props, toys and books on the theme to enjoy. During the week, after Iris’s therapy sessions, we would work on the next club theme. We would cut out shapes of creatures or letters to stick on the glass gable end. Iris would be ‘helping’, with Thula by her side, of course. My only disappointment was that I could rarely find another girl to join Iris, the majority of children diagnosed with autism seemed to be boys, whether this was because girls were more effective at adapting I wasn’t sure. There didn’t seem to be any concrete evidence as to why this was. Iris’s behaviour was certainly different to the boys: she was so careful with her toys and her generosity about sharing her world and her things with them all surprised me at times. She was gentle and giving, not minding at all if other children played with her toys. As each week went by Iris was becoming more social; she could only manage small bursts with the others but they were lengthening and I saw more moments where she would play close to the others, not exactly with them, but by their side. She still wouldn’t talk to them, though; she would stay quiet and watch them, humming with appreciation if something pleased or excited her.

  Animals started to become large characters in our groups, and we had regular ‘meet the animals’ sessions throughout the year. The children learnt about reptiles, falcons, owls, giant snails, hedgehogs and rodents from around the world. They were a wonderful talking point for the children, encouraging them to sit closely together to listen about the lives of these creatures, handling and spending some time with them.

  Since all Iris’s musical instruments were so popular at the club I also arranged for a series of music workshops with prof
essional musicians. The children loved experimenting and learning about all different types of music. In these workshops we had electric guitars, pianos, drums, mikes and mixers. The light was bright and I had to work hard as a photographer to capture the scene before me. Happiness spread through them and to me. Iris danced by the window with the white ukulele, Ed with the mike and James on the drums, while Oliver bounced across the room on the big red therapy ball. The odd collision was inevitable as the musicians tried to dodge his moves. The music was loud but no one seemed to mind except Thula who had retired to the comfort of a duvet upstairs. Just as I took a photograph of James I felt Iris beside me, handing me the white ukulele that she had been playing earlier like a little rock star. Her hand guided mine into position. Bending down with her ear close to the instrument she waited there until I played. Satisfied, she moved on to P-J and got him to play the guitar, then she took one of the instructor’s hands and led him to the sofa, presenting him the electric guitar. ‘I’m not really a guitar man; I’m better on the piano,’ he said, but the guitar was placed firmly in his hands and so he played it. Iris seemed satisfied and moved on to the next band member until everyone had an instrument to play and her band was complete. Keeping us all going was a whole new game and I watched her interact with each person in turn, including the children. The music was expanding her horizons. She was blissfully happy, confident and thoroughly enjoying herself directing, making everyone laugh. If only life could carry on like this but it wasn’t to be. After this much intense interaction she needed a break, so she lay in our bed upstairs with some books and Thula while the others finished the session.

  Our special Saturdays – from circus days to Viking warriors – became a source of so much, and my photographs that captured all the fun provided many opportunities for me to work with Iris during the week. We would look over them, giving us a chance to practise vocabulary and remind Iris what she had achieved, building her confidence. We laughed and laughed as Iris twirled around in her playroom, silk scarves held high, doing little leaps imitating the morris dancing display that we had watched at the weekend. The idea of a team of dancers with bells on their knees and old English costumes might seem like a challenging experience for children on the spectrum. In fact, I had had some doubts about how successful it would be and as more and more cars had pulled up outside our house and the garden filled with dancers I had begun to wonder if my idea was completely mad.