Iris Grace

by Arabella Carter-Johnson

  ‘Yes, definitely,’ he replied a little too quickly. I wasn’t sure if that was a man’s answer, filling in the blank with what he thought I wanted to hear, but he had only just woken up so I went with it.

  ‘So, my thoughts are that I need to carry on with what I was doing but make it even more fun. I have a good idea now about what she loves, how she interacts with her toys and I want to expand upon that. Here is a list of the things we need to get.’

  P-J looked at the list. ‘But we already have plastic balls for the ball pool.’

  ‘We need loads more, masses of them, as many bags as you can carry from the shop back to the car. I want to fill a large paddling pool with them; we can create our own at-home sensory room for her. Ball pool, sensory lights, chill-out area, slide made from a mattress …’ The lights were expensive, but I was sure they would be worth it. Iris loved colour and I was convinced they would really help her calm down when she was upset or let her focus on something beautiful if she was anxious.

  ‘Right. I’ll be in charge of this list. I can get all of this. A big trampoline, great. Let’s get a huge one.’

  ‘Don’t get too carried away – I want it to fit inside in the garden room. I think we will have to move the dining-room table out, but we hardly eat in there as it is.’

  P-J was already on his iPhone, looking up trampoline options. He looked at the list once again: ‘This last note here: MUSIC. What do you want me to get?’

  ‘I’ve been thinking how about my parents’ piano. We can put it along the side of the wall.’ I moved into the garden room to show him the position just between the two main beams, in the middle of the room against the side wall. I felt really strongly about this last item. I could see how much it would mean to Iris. She loved music so much and lately the only music she would fall asleep to was a CD of piano music. I wanted to be able to play it to her myself. P-J had also played a bit as a child and we resolved to start learning properly again. I had been reading about music therapy for children with autism and how much it helps them … It felt like a good option for the future. I started to make more notes of all the things that I needed to research: music therapists, music teachers, piano tuners, restorers …

  ‘Right, I will get all the rest of the things on this list today then.’

  ‘But we can’t go out today, look.’

  P-J looked out of the window and took in the snow for the first time. ‘Good point! Let’s go sledging!’ he said excitedly like a small boy. ‘Where’s Beanie?’

  I had been a little ambitious thinking I could get Iris to happily wear the gloves; they turned out to be an absolute no-go area. I couldn’t get them to stay on for more than one second, so I abandoned them and went on to her boots. It took hours for me to persuade her they were a good idea, pairing them up with music and her favourite toys. She wanted to feel every part of them, to understand how they were made and that she could get them off easily if she wanted to. With them finally on we stepped out into the snow. The crunch unnerved her, so they went out into the garden together, Iris in P-J’s arms. She gently touched a ball of snow in his hand with her index finger. The cold sensation was enough for her to decide this was interesting but not for her. No amount of encouragement would get her into the sled. This was going to take some getting used to – to forget our agenda and to follow Iris. To leave all those expectations behind, to try not to just replicate all our happy childhood memories and instead to focus on what Iris liked to do. Then when she was ready for new experiences to take them slowly and allow her to understand the whole process. So I sat in the snow with Iris on my lap and I let her shake off her boots. She watched the snow fall from heavily laden branches. With joyful hums, her hands occasionally flapped at the movement before her as if the forces of nature were transmitting their energy and then quickly being dispersed through her fingers. Listening to the gentle crackling sound of the snow as it melted and the dripping water from the slate roof, she was in a state of elated calm.

  In the late-afternoon golden light a long strip of tissue paper floated gently to the ground to join its friends. Ribbons of white created an effect like a giant piece of modern art on the floor. ‘Beanie has been busy!’ P-J said to me as he came into her playroom. A ritual that had once filled our days was luckily today just a jaunty journey down memory lane inspired by the snow. Iris’s interests could turn into addictive fascinations that seemed to rule the land. From water to bubbles, rice to sand, and tissue to feathers, the connection between them all was movement and gravity: to watch them fall, to see them spread. The motion always totally captivated her, so before interrupting I tried to think twice, suppressing my urge to tidy. What to us might seem a repetitive obsession could be important to the workings of Iris’s mind, helping her figure out the world and the delightful effects she had upon it. I viewed it as an invitation into her world and joined in. Always carefully observing her, always watching for signs to see if the activity was being taken too far: was she getting frustrated by her own actions or enjoying them? If she was starting to feel pressure from herself, her body would be tense and her movements would become more repetitive and her hands would flap but at a much higher speed with quick movements right close to her chest, her hums becoming more intense. I would have my ‘Mary Poppins’ bag at hand, which was filled with intriguing sensory toys – squishy, stretchy and tactile objects that were so alluring they would take Iris’s mind away from what she had become fixated upon so she could relax.

  Our home gradually changed. Every room came to serve a purpose in Iris’s therapy. At times even the corridors were obstacle courses designed to encourage interaction and speech. My mother would arrive at the door with a cooked meal for us all and barely be able to get to the kitchen. There were sand tables and water tables, and even my photography equipment played its part. The massive silver reflectors created fantastic circular bases for me to put plastic balls to encourage Iris to play. With every sofa and chair in the house stripped of its cushions, I made ramps, walls and ball pools. I dotted Iris’s favourite books at strategic points along the way to inspire her to move on to the next activity. She would reach out to me, needing my help climbing over the cushions all piled up or for another go down the mattress slide into the ball pool. Before I helped her use the slide I would say, ‘One, two, three,’ and then pause, waiting for her to look up at my face. As soon as she did I would say ‘Go!’ and get her going down the slide. After a while she began to even mouth the ‘g’ for ‘go’ and I knew we were on to something. By keeping it fun and rewarding for Iris and using what she loved she was responding and many more sounds reached our ears. She was beginning to use language to communicate. While we played whenever she looked at me I would say ‘good looking’, always praising her for these achievements no matter how tiny they seemed to us, then letting her rest afterwards. She found it tiring and I knew if I pushed too hard she would retreat, moving away from us and taking a book on to the sofa where it became difficult to get eye contact.

  Tip-Toe, acrylic, June 2013

  With all this sensory play we began to see improvements in other areas. For instance, she started to tolerate socks and shoes and wear a few accessories like hats when we were out. We also made some progress with her speech. Using some basic techniques from the speech therapist and highly motivating activities like bubbles or her favourite toys, we would encourage her to say some sounds. Iris practised simple actions like blowing and became more lively – giggling and joining in with all the fun, using more gestures and sounds to show me what she wanted. It was slow but we were moving forward. The coffee table was always prepped with paper and crayons for us to use. I would feel her warm grasp on my hand pulling me over to the paper where I had been drawing stars, guiding my hand to the crayon and placing it on the paper: she wanted more. The paper was already full: a celestial heaven. Again and again she watched in delight at the two triangles overlapping each other. She was safe and secure in the comfort of repetition, the superhero cloak of k
nowledge providing confidence and peace. Our little Beanie was a creature of habit and quickly organized objects and even people into their place. There was order to her kingdom and veering off was not on the agenda. We encouraged change softly, little by little, by being there for her when all became overwhelming – a balancing act of challenges and allowances.

  The garden room was proving so valuable, the light that shone in through the floor-to-ceiling windows inspiring us. I was still working hard photographing weddings at weekends. Iris’s sleeping had improved a little, largely due to a visit from my aunty Sally-Anne, my father’s sister, a mother of five. She wanted to see Iris’s room and when I showed her she suggested that I made some changes. She didn’t believe in keeping children’s bedrooms plain so they could sleep better. Quite the opposite: she wanted to see more pillows, rugs, teddies, books, paintings, drawings, cosy areas, fairy lights – anything that would make Iris think this was a wonderful place to be and for her to want to go to bed, to want to relax up there and for it to be a magical place. Her plan worked well and the more additions I made, the more enchanting the room became and the better Iris settled in the evenings. It wasn’t a complete cure; she would still only need about five or six hours before she woke up but at least we were heading in the right direction. Almost weekly there would be a blip and old habits returned. It was still difficult to manage. My exhaustion was a continual battle, but the garden room gave me so much strength.

  But I worried that P-J and I were drifting apart. I spent so much time with Iris; it was all-consuming from the moment I woke till I went to bed. Some days I didn’t know if I could give any more. How could one person be split so many ways? I was pulled in every direction – between Iris, work and my relationship with P-J. When I was around Iris just wanted me. She would take P-J to the door and quite literally push him out at times. And when she was upset I would do the same to him. I knew what I was doing was horrible and must be hurting him but when tiredness set in it was a reflex. Iris’s behaviour towards him was painful to watch. When she didn’t want him around, her hand would shoot out with her palm facing him like a stop sign. She would turn her body away and there was no doubt what it meant.

  For so long P-J had to be brave and love her from afar. Iris saw him in a more functional role, taking my place when I was gone. He desperately wanted to play, to laugh with her and to create happy childhood memories, to be the father he wanted to be: fun, loving and the adventurer. He waited patiently for those moments of laughter and giggles, all the while watching me get closer to her. He didn’t yet understand her like I could, even when I explained how I was achieving it. When he tried, it didn’t seem to work in the same way – she reacted differently towards him and to others who tried.

  ‘As long as it’s working for one of us. Whatever works. Look how much better she is with you these days,’ he would say with a smile, but I could see he was struggling to hold that smile.

  He wanted it to be him for a while and sometimes I did too. I wanted for someone else to take some of the load, for me to have a break. I also wanted to comfort him, to make time for us as a couple, to mend what was breaking, but there never seemed to be enough time. But in the darkest moments the glass gable gave me light, filling every part of me with hope. We spent happy times as a family under those beams and they were mending our somewhat fractured lives.

  One great new addition was the piano. Iris loved it from the start and right away went to sit on the red-velvet-covered piano stool. It was as if she already knew this old piano from years ago and they were old friends reuniting. The lid was always to be kept open, inviting a conversation and time to play. Once the piano had been tuned it sounded fantastic and gave a warmth to the room that could only come from music.

  Then, as the seasons changed so did our view, and the garden beckoned Iris to explore. I began to see the garden as another space for us to work in and the decking area was perfect for all the sand and water play. We bought a swing chair for Iris and every day when the weather was good enough I would spend an hour or so in the morning setting up play areas: a cosy comfortable area with cushions to read books and an array of activities spread throughout the garden to encourage her to move on and to interact with me and the nature around us. When she needed space she would sit alone in the swing chair looking out at the trees. Watching leaves in the wind, she was so peaceful, almost serene, looking far older than her years and a whole world away from the anxious little girl I would see when we were surrounded by other people. Her repetitive and often obsessive behaviour would disappear and was replaced by a child filled with curiosity. She was no longer distant or disconnected. As the leaves moved, her hands reached out, her fingers gently moving with them, almost conducting, dancing and connected. I came to realize that the garden was doing more for her than I first thought. Her frustrations calmed and she could relax out there among the grass, flowers and trees, but they were offering her more than relaxation; they were helping her make sense of the world around her – soothing and nurturing at the same time.

  There was one spot in the garden that Iris would return to again and again: the tree stump. So much had happened since we had cut down that tree in the garden, which had hidden our house in the shadows. I loved the stump as much as Iris did. It was a solid reminder of all the energy and dreams I had had back then and I didn’t want to lose that. From a distance time seemed to have had no effect on it, but if you looked closer there were changes. Life thrived within the bark. It was home to all sorts of creatures and Iris loved inspecting their habitat. It was well positioned in the garden for many activities. The ground around it was flatter than other parts, perfect for laying a rug out with cushions. It was also more elevated, providing a great lookout tower. In the early summer P-J and I watched Iris as we ate our breakfast. Her calf muscles tensed and ankles flexed, and her heels rose up high, little toes curled from the pressure of standing perfectly still in the breeze as she surveyed her garden from on top of the tree stump. Everything was in order. She did an appreciative nod, then climbed down on to the grass and danced on tiptoes over to the flower bed, springing to the sky effortlessly like a ballerina on her unusually long legs. This was a sight that has become a signature quirk of her condition. The common link between autism and walking on toes isn’t yet clear, but we could see that Iris gained comfort and a release through the sensation. She would bounce from the balls of her feet when she was happy, exhilarated or surprised, but they lay flat on the ground when she was calm – a striking indicator of her mood. Later that morning she placed her hands on top of the stump, feeling the grain, running her index finger along the many growth rings. She hummed contentedly and stood completely still with her feet flat on the ground. Then her attention turned to the bark and all its varied textures and colours. She climbed on top of it, feeling every part with her feet too, placing both feet and palms against the wood at the same time, as if she was drawing energy from the stump. Once again I saw a child so composed – not in a world of her own, but linked with the nature that surrounded her. As I watched her from the decking it was as though she cast a spell over everything. The world felt more alive and interesting to me too; it was enchanting. Her interest in the elements and attention to detail was inspiring and I started to see the world through her eyes, noticing intricate details, listening more intently and appreciating the beauty. My own senses were heightened, giving me a deeper understanding.

  Monsoon, acrylic, April 2013

  On another day ‘monsoon’ rain fell heavily on the garden-room roof. From the kitchen doorway I could see Iris’s silhouette at the window, looking out on to the decking at the huge raindrops bouncing up high. A sheet patterned with concentric rings. She was mesmerized, her slim figure rigid and still, then suddenly, with an excited spring, she started to bounce, imitating the drops on the other side of the glass. As I approached she turned and smiled at me. Running over she grabbed me by the hand and took me to the door, wrapping my fingers round the door handle. No
words were needed to understand that she wanted to experience every part of this and that meant going outside. So we ventured out – pitter-pat, pitter-pat – her bare feet and the rain in harmony together. She darted in and out of the door, coming in when it all got too much. Sitting down just in from the rain, she watched it fall at ground level. I wrapped a warm towel round her and we sat together watching the raindrops. My mind was as busy as the patterns we watched, bursts of thought, ideas forming and then leaving, my tiredness catching up with me.

  With all these improvements in Iris’s second year I had begun to look forward, to the future and the next stage of Iris’s life: the preparation for her to go to school. This wouldn’t be a quick or easy process; she would need to attend a preschool first for a few days a week when she was three years old and then build from there until she was going five days a week when she was four. The goal: Iris happily attending preschool, interacting with her peers and teachers. Then, at four to five years old, attending school. I knew we still had much to overcome, as we certainly had our fair share of challenging days when no matter how hard I tried things just didn’t work, but they were being outweighed by better days, and I started to imagine Iris happy in a preschool setting and myself regaining some balance in my own life.

  Iris was enjoying our activities and becoming so much more confident. By the time she was two and half she was interacting more with P-J and the rest of the family. She would raise her hands up for P-J to pick her up, and she wanted to be comforted by him and wanted his attention even when I was around. He would play her music on his iPhone, and they shared this appreciation and it became a way for him to connect with her. She was also more confident with other people around, and we had many happy Sunday lunches with friends and family at my parents’ house.