Iris Grace

by Arabella Carter-Johnson

  But as the weeks went on it became clear that she had no interest in the horses themselves; they were just a mode of transport to take her through the woods so she could be in nature. Some weeks, if the horse wasn’t ready for her to go straightaway, she would become distressed and impossible to calm and we would have to make our exit. She didn’t want to stroke the horses; in fact, she wasn’t interested in any contact. And it was hard for me to watch as once again I realized that I had been pushing my own agenda. It was my love of horses that had driven this latest therapy. I so badly wanted more developments – to hear her talk, to see her play with others – that I had pushed an idea which hadn’t come from Iris but from my heart.

  It sounds like the simplest of ideas to follow your child, to use their interests to build on their strengths to make connections, but the reality is very different. It’s a continual learning process: constantly observing, taking yourself out of the picture and focusing on what is motivating your child, thinking fast and outside the box. I had believed so strongly that Willow and horses were going to help Iris, but it was too early at this stage in her development. I needed to give her time.

  It was time for me to think again, to go back to what I knew Iris was interested in, to stop trying so hard, to stop rushing her into more therapies, to stop desperately trying all these different techniques. Instead I needed to concentrate on what was working, and most of all have some patience. So I took Iris to places where she could be immersed in nature. We visited gardens, forests, streams, lakes and rivers, always encouraging speech through play. The outings provided some relief from the isolation for all of us. Water play became part of every day and incredibly useful with her speech therapy.

  By the end of the summer I felt happy about the idea of Iris starting preschool, although I didn’t think it would be easy. I felt certain we would have some sleepless nights, but was hopeful that Iris would settle in well. She would have a support worker with her every day, whom we had already met, and she had been kind and accepting, making me feel that we were in safe hands. She seemed so interested in Iris and her condition; she was going to attend a short course on autism and she wanted a great many details from me, such as how I communicated with her and how Iris communicated with us. I believed that she had the best of intentions and as she answered my questions and assured me I would be allowed to stay with Iris for as long as she needed, I felt calm and confident that this was all going to work. I was concerned about the noise levels when the children first arrived in the morning or while they were leaving so she said that we could arrive later and leave earlier. She also wanted Iris to start her term a little later than the others so that most of the children would be settled by the time Iris was introduced. It was all looking very positive and my worries were eased by the school’s flexibility and willingness to understand and help us.

  As we approached her third birthday Iris gradually came out of her shell more and more. For her birthday we had a small intimate party. This time, I didn’t wrap her presents in paper; instead I packed them all up in an owl rucksack that was to be her school bag and she excitedly pulled each item out one by one. They were all small toys with her interests at the core. She enjoyed herself immensely and I felt I was getting into my stride.

  For the first time at preschool I saw her smile. Her pale face was transformed: happy rounded cheeks and beautiful bright eyes with long eyelashes. At three years old she looked unusually tall alongside her peers. She picked up a jug with one hand and filled it with water. The other hand held a green wooden disc, a part from a puzzle that had become a treasured piece. She poured water slowly over one of the half-submerged toys. Bending down close to watch how the water moved, she observed every ripple and drop with fascination. I heard her short intakes of air as the last drops fell. Then her hand was resting lightly on the cool surface of the water, happily feeling the sensation and the pressure against her palm. I took the chance to step back for a while and watched her in this rare moment where everything had gone quiet. The other children had moved away to the other side of the room to have their mid-morning snack, but Iris had chosen to stay at the water table. The guilt I had been feeling so heavily for the past weeks lightened as I watched her – maybe everything would be OK. We would get there and Iris would be able to manage preschool.

  A little boy, having finished his snack, was on to his next mission, and with the carriages attached they were off, knees shuffling speedily from one side of the room to the other and the plastic wheels of the train running noisily across the hard floor. Iris reached out to me immediately and wanted me to join her, but before I got there she started to cry, unable to bear it any longer. The noise from the train obliterated the progress we had made that morning and I could feel her pain; she was shaking, gripping my arm so tightly that it hurt me too. Her heart was beating fast and she had gone strangely pale, in contrast to my hot flushed cheeks. Failing to prise off Iris’s limpet-like body, which had no intention of ever leaving her rock, I explained to the teachers that we needed the train to be put away so Iris could settle. They didn’t understand. Why would they? Iris had a complex condition and in any given moment she moved along that spectrum with varying sensitivities and autistic traits. Sometimes these were predictable but at other times you had to open your mind wide, thinking like her to understand. She perceived the world differently and had very weak communication and social skills, withdrawing into herself when around others. With no experience of autism or how certain sounds can be a living hell for children on the spectrum, my request was not taken well – in their opinion the removal of any toy wasn’t fair on the others. I wanted to stand up to them and fight our corner, to fight for my child who couldn’t yet speak for herself, but I had run out of energy and could see there was no point. The noise, the chaos of free play and the mess was closing in on us. Those rare moments of happiness were fleeting. Even the lighting was a constant irritant: the strips of flicking light that sent peace on its way, and that train with carriage after carriage being dragged, pushed and bashed along the floor. I took Iris out into the playground and breathed in the cool air, trying to find some strength to carry on with the morning. How could I make this work? How could they understand when there were no clear answers and no format to follow with this complex condition?

  I began to sense my presence was no longer welcome in the preschool class. I had already stayed for three weeks now to try to help Iris adjust and manage life in a class filled with other children. It was not going well. Whenever she moved away from the others to try to find a quiet space they followed; it turned out she was rather like a magnet. Just as Willow had loved following Iris about, so did the other children. They were curious about the intensity with which she played with toys, her interest in textures, how surfaces felt on her skin, how pouring water can become an art form, and they sidled up beside her trying to join in. Iris’s gentle nature was pushed to the brink as her personal space shrunk by the second. If kept at an arm’s length, she could tolerate them, but any closer and there was trouble. She would either burst into tears and be inconsolable for a long period of time or push the child out of her space. Repeated patterns drawn on to paper with a crayon by me or the support teacher helped. She would follow our zigzags or swirls with interest and jump on her tiptoes with excitement. We used the exercise to try to gain eye contact and encourage speech. First she would guide our hands, wanting more patterns to appear. Then as soon as she looked up at our faces we would make our move, drawing patterns on the paper. After that we would say ‘more’ and pause, waiting for her to attempt the word. When we heard an ‘m’ the page would be filled with more to reward her efforts. I was grateful to have found such little pockets of interest that allowed us to get closer. These activities provided a sanctuary, but not for long; before you knew it she had got so obsessed by the activity that it was nearly impossible for her to move on, and we would be stuck with the snail-shell swirls. She grabbed these predictable formations and held on until our t
ime was up and we could make our way home before the other mothers arrived, avoiding the inevitable mayhem.

  Our attempts at getting Iris to have fun in the playground were challenging too. While the others played, Iris followed the white perimeter line off to a tree far over on the other side, away from everyone else, and sat alone to inspect a cracked area of the ground under her feet. She craved solitude and her eyes glazed with a faraway look. I knew she wanted to be back in our garden in the swing chair. I could see she was finding some peace by letting her mind wander but she was unresponsive to the outside world. She would not turn if we called her name or even look at us when we approached her. She avoided all face-to-face contact and wouldn’t ever hold our hands. I felt like we were taking backward steps. Actually they felt like huge backward leaps. At home, even when she needed space, she was with me, in the present moment, experiencing life and enjoying it. She was more responsive than she had ever been, but at preschool it was like seeing her a year before. And the more she slipped away, the more I felt my heart break. All that work, for what? To see her crumble? For our lives to return to those earlier days?

  Separation, acrylic, April 2013

  Every time I took her in, I dreaded the walk through the corridor between the buildings to her classroom. Iris would spread her arms and legs out wide as I carried her, trying desperately to grab anything she could to prevent us going in. It was like being on holiday in Cornwall again when I was trying to take her into shops. She was making her feelings clear and I was ignoring them and that just felt so wrong. I had promised I would listen, take more care and consideration, and here I was breaking that promise. As soon as we were through the door she wanted to go home. I hated myself for putting her through it, but at the time it seemed like the only option. This was what we were advised to do to prepare her for what came next: the transition to school five days a week. Our options were very limited. All the other preschools were bigger, with larger class sizes. While the private schools conveniently had closed waiting lists once the ‘autism’ word was mentioned, and specialist schools and nurseries were too far away.

  The goal for Iris to happily attend preschool and then school was fading, and I felt out of control, with no pattern to follow. But looking into Iris’s face I suddenly decided I couldn’t go through with it any longer. Her lips were cracked and bleeding from her latest anxiety-driven habit of picking them endlessly. She had lost weight from not eating properly and had dark circles that resembled sunken pits round her eyes. Her sleep patterns since starting preschool had gone from unpredictable but improving to ridiculous, and I was starting to suffer too. P-J tried to help but Iris just wanted me. It was difficult to watch him continually being rejected and our tempers were frayed. His relationship with Iris was falling apart and she rarely wanted to be with him any more; even music didn’t help. Nothing I said or did made any difference. She had been pushing him away, which was a regression, and with me too she didn’t want to play. She would still hug me but in a more desperate manner, clinging on, squeezing me tight. P-J and Iris had made such great progress with their relationship during the summer but Iris was now shutting down to everybody. Everything we had worked so hard for since her diagnosis was disappearing fast, being replaced by a monotony of fear and frustration.

  Her autistic traits were at the forefront of everything, controlling everything: our relationships, our life, our work and our health. Her senses, emotions and feelings were never in harmony; they were always fighting, and for Iris this was devastating. Her obsessive and controlling nature was pushing all of us to our limits. P-J couldn’t keep up with all the different ways she liked to have things. For example, she had to be fed from the same side and have her water cup given to her a certain way otherwise she wouldn’t have any of it. She also liked to be put in the car a particular way and put into bed the same way each time. When she was at home she got stuck on certain parts of cartoons and wanted them playing constantly. She wanted one book open on a particular page and for us to read it to her over and over again. The one customary item that she liked in her left hand had turned into a collection. This caused enormous frustration: there were too many things for her to carry and her hand eventually resembled Edward Scissorhands, with items wedged between each finger and clasping a couple in her palm. Every aspect of our day became ruled by a set routine that fluctuated on Iris’s terms. And as her communication skills broke down and she rarely looked at us any more, these tendencies were becoming very difficult to handle. The only way we knew we were getting it right was if she didn’t cry. But if we got them wrong, she would get distressed really quickly. It was trial and error as we tried our best to understand what she wanted.

  As I left the school that day with Iris looking shattered in the back seat, the car stalled with a big bunny-hop – completely my own fault through tiredness. I checked my mirror and noticed the other mothers all chatting at the gate. Their carefree happy manner held my gaze. Jealousy ran through me and I began to feel angry. Anger at what, I didn’t know. I couldn’t blame Iris – this wasn’t her fault – and I certainly couldn’t blame the other mothers for having an easier time of it than me. I imagined what their lives must be like, dropping their children off at school, having some time for themselves – even if it was just a few hours – how refreshing must that feel. I stopped myself: there was no point in comparing lives. This was mine and that was theirs. Even if they looked like the picture of perfection right now with their freshly ironed clothes and beautiful hair there was always something hidden behind those smiles and happy chatter. Everyone had hardships to deal with and wallowing in mine wouldn’t help. Driving home felt like we were breaking free – down the hill and then on up the country road – there was such a sense of relief for both of us.

  I wanted to hold on to that feeling for ever: the freedom, that glorious freedom. Before I knew it I was making a vow to Iris that we would not return, and I could see Iris’s reaction in the mirror: she was happy, and that gave me the courage I needed to go through with it. The decision to take Iris to preschool had been down to us. It wasn’t a legal requirement and I could take my time over the next year to prepare her for school myself. We had asked too much too soon and plunged Iris into the deep end with people who didn’t fully comprehend her condition. As I parked up in our driveway and unbuckled Iris from her seat she hugged me. It was a beautiful hug, calm and sweet, her face tucked into my neck, and I could feel her breathing steadily against my skin. I don’t know if she understood what I was saying to her about how we weren’t going back there or if she just sensed my relief, but that hug made me not question the decision. It stopped all negative thoughts in their tracks and reversed them, shooting them into the positive. Surrounded by people that didn’t understand in the preschool, I had felt so alone, but at home that day the loneliness disappeared.

  Namazzi Blue, watercolour, January 2014

  I would teach Iris at home for the next year and hopefully regain all that we had lost. My head filled with ideas, fuelled by the hope that I had to cling to. I was going against advice and making our own way. I knew that P-J would be one hundred per cent behind me but I was worried about Iris’s grandparents. Every time we spoke on the phone or in person they would all ask eagerly after Iris and preschool, their hopeful tones and faces wanting the answer to be that she was settling in just fine, that we were over all the difficulties and that things were OK. The disappointment that came with my replies and their hugs of support made me emotional. But to my relief when I told my mother we were stopping preschool she was totally supportive. She couldn’t handle seeing Iris like this any more either and suggested that I find some private therapists to help me over the next year.

  With winter approaching my aim was to research and find professionals to help me in four key areas. An occupational therapist to help me with Iris’s sensory needs and some of her more challenging behaviour, like her problem with transitions between activities, play skills, responses to certain stimuli and h
er ability to self-regulate. A speech therapist and a music therapist to encourage communication, and a dietician to help me assess Iris’s diet and see if there were any improvements we could make to help with her behaviour and sleeping problems.

  There was one cartoon that Iris loved called Dipdap, in which a drawn line created endless adventures for the little character. He was an almost alien-like creature with two huge eyes, but no other features – all very plain. I could see the attraction; it reminded her of our game together when I drew stories, and the character had a simple face, with nothing confusing to figure out. So for the following weeks I followed suit and simplified our lives, creating spaces that Iris could relax in. With all the turmoil of preschool over the previous month, the house had got increasingly untidy as I had struggled to manage our lives. So the busy, cluttered alcove in her playroom was emptied, decorated and organized to give her a fun creative space. I drew a tree on the wall with a pair of owls and flowering branches with Iris’s colouring pencils. Her books were neatly put away on the bookshelf and I bought pieces of furniture to display her toys. Her playroom was no longer a chaotic space but had some order to it.

  I think the whole process was therapeutic for both of us. I needed to feel like I was getting some control back in my life, that we were working towards a positive future, and Iris found some peace in the order. She would line up her toys, and play fruit would be taken out of the bowl and neatly arranged along the edge of the sofa. The same was done with large gravel stones from the driveway; she brought some in one at a time and lined them up on the windowsill. The more organized I got the better I felt. I could tell Iris felt it too and her hand slowly emptied until we were left with just one last item: a pink spoon. My mother suggested that we came over for lunch during the week, a quieter time where Iris could learn to be at theirs and relax again. We decided to go on Fridays and to stick to that day as best we could to give Iris a sense of routine. Generally Iris would still only interact with me but the lunches provided opportunities and security for her. Some weeks she would settle well, exploring the garden after lunch and then going off upstairs. My mother and I would follow her and let her discover all sorts of treasures in the other rooms. There were certain ornaments and perfume bottles from my mother’s dressing table that she adored, so they became part of a new routine. When we arrived Iris would fetch the bottles from the dressing table and come back downstairs to be with us. My mother would remember and put them closer to the edge so she could easily reach them. These details were anchors in Iris’s world and it was a technique that worked well to encourage a smooth transition.