Iris Grace

by Arabella Carter-Johnson

  I visited them all and never felt that she would fit into any of them. Iris’s problem with wearing certain clothes concerned me greatly. The advice from schools was that she must wear the set uniform no matter what, because they wouldn’t allow her attendance without it. They described how she would be in what they called ‘sustained distress for many weeks if necessary, while they dealt with the problem’. Knowing that Iris must have reasons for her anathema to clothes, and horrified by their suggestion, I did the opposite. I wanted her to want to wear her clothes, not for me to force them on her. I believe that every time you treat another in such a way, animal or person, you take a piece of them away. There is always another way, a different road to travel; it usually takes longer and it may create doubt and uncertainty at times, but the end result is pure.

  Most schools just replied to any question I had with, ‘Don’t worry, we will take care of everything.’ Those words made me worry more than ever before. I left every car park, one after the other over many weeks, crying at the steering wheel. How could this be right for our girl? It certainly didn’t feel right and in my heart I knew it. It didn’t seem to matter how fantastic the facilities were, how many soft playrooms, sensory rooms, swimming pools … The sound of meltdowns from other children on a regular basis scared me. This was apparently ‘normal’, but for us it wasn’t. Yes, Iris went through meltdowns but they now happened rarely and only when things had spiralled out of control. Usually we could see the signs before it got to that point and managed to calm her; we would lower the lights, turn off televisions and sit quietly, focused on a book she loved, and in time the anxiety passed.

  She was so vulnerable, only able to speak a few small words, and unable to tell me how her day had been or what had happened. I needed to trust, to feel safe in the place where I was to leave her every day. The reality was I felt terrified. It’s something I feel teachers and therapists may over time take for granted, the leap of faith a parent of a non-verbal child must take to trust another with them.

  We settled on one school that seemed to have a more flexible approach. The headmistress was kind and listened intently as I told her about Iris’s paintings and how much she had learnt over the past months, how I had been engaging her in activities. She was a breath of fresh air to me, with assurances that they would do everything possible to accommodate our needs and support us, even if that meant flexi-schooling so Iris could work partly at home.

  But then the teacher I had met moved on to another school and the new head wasn’t impressed when I talked about our previously agreed plans. Iris was placed in a different class to the one I had been expecting, all non-verbal children with severe disabilities. As I watched her play with toys and wander around the room with the others in their wheelchairs I worried how she would develop. How was she going to interact when there were so many difficulties? Iris even started to copy some of the more challenging behaviours in the classroom and it just didn’t feel right for her. I expressed my concerns, adding that I didn’t want Iris to have the sugary snacks that were on offer at breaktimes as we had been working so hard on her diet. None of my requests were taken seriously and I felt uncomfortable. We did a trial week at the start of September, but by the end it was clear that it wasn’t the school I had thought it was. I found their expectations and aspirations for Iris deeply depressing. They didn’t seem to listen to me as I spoke about how she could paint and the way I had been using her passions to teach her and open up doorways to communication. They didn’t see her potential, and I knew we hadn’t found the right school so the search went on.

  There was a clicking noise from my bike tyre; something had lodged in its treads, so I stopped. As I pulled out a rather large twig, a loud hissing reached my ears and a long sharp thorn made an appearance. I rang my bell four times to alert P-J to stop and we quickly exchanged keys so they could go on home and rescue me with the car. Trying to keep calm so that Iris wouldn’t get upset I smiled at her and off they went. I was by myself, walking the bike home along a narrow country lane with the warm wind swirling around me, and the thump, thump of the wheel. As I looked down I realized how much it resembled my feelings that afternoon, going flat and losing energy, out of luck and going round in circles. For the past week I had been speaking to more and more potential schools. Some were full and others had only a couple of places left for the following year, with many children still applying. Had I left all of this too late, with the excitement of Iris’s paintings and the media storm? Maybe I had got too distracted from what I should have been doing, finding a school. Was this all my fault? I had visited some more, each one making me feel like I was being backed into a corner, making do and compromising. Words from one of the teachers rang in my head as I walked home: ‘We train the children.’ I had always believed that the best teachers show you where to look but don’t tell you what to see.

  I wanted to find teachers that wouldn’t suppress Iris’s creativity or break her spirit: she needed to be happy in order to learn. I walked on, enjoying the peace of my unexpected time alone, considering my options for Iris’s education. With a rejuvenated, powerful sense of freedom the idea of homeschooling returned. She was still very young and so much might change in the years to come, but right now, I realized, this was the best option for Iris. I had only planned to educate her at home this year but things were going so well, why stop now?

  In that moment the rescue team arrived over the hill and as the bike was fastened safely to the back of the car, I kissed Iris on the cheek. What followed can only be described as our own special handshake: a combination of hand movements and sounds as we both giggled in the back of the car.

  That evening after the bike was back with its tyre mended, I made a list of some fun activities that Iris and I could do the next day. P-J and I discussed how we would make it work and we both felt confident about the decision. I couldn’t help but feel grateful for that spiky thorn for giving me the time alone to think.

  September brought mixed feelings, Iris turned four and she had a wonderful birthday but I was reminded everywhere of our different life. The new school year had started and photos of our friends’ children all dressed in their smart uniforms had been proudly posted. It made me wonder if I had made the right choice. Sometimes it was hard to be so far removed from the norm, the feeling of not fitting, remote and alone. Our daily struggles and challenges felt like a cruel reality while we saw everyone seemingly cruise on by. In those moments I realized how hard I had to work for the simplest of interactions: to hear Iris’s voice, to see her smile and for her to look at me. That realization hurt and then it was washed away with the thought of how we had started to connect with her and I was grateful for that. We had been blessed in ways no one could predict and our lives would not be ordinary; they would be extraordinary and that was something to be proud of and to celebrate.

  A few weeks later the atmosphere changed quite dramatically, I looked for Iris in the garden and saw a white mound by her favourite tree stump. She was under her duvet, which she had taken outside so she could sit comfortably in the cold air with some loyal friends. ‘Fimbo’ was a character from a cartoon that Iris had loved the year before. The plastic toy was clutched in Iris’s left hand, his striped yellow-and-green arms resting above her forefinger, which was curled round his tummy. Her play had been evolving; she now interacted with her little friends instead of performing a daily inspection line and they went on adventures together, getting tucked up into bed after a long day. This development was like a keystone in a social world, making progress possible. But today even Fimbo wasn’t comforting her. I called her to come up to the house, but she turned and then buried herself underneath again all cocooned in white. For the last few days a sadness had overcome her. Autumn had arrived so suddenly that it shocked her mind, body and soul. Change was never easy. One day she had been dancing in the warm sunlight in the garden, then the next a cold wind had made her shiver, damp grey air surrounding her. It was as though when she woke in the m
orning and looked out of the window her heart broke. She cried and stormed outside, determined that she might change this unwarranted shift in her world.

  Blossom in the Wind, acrylic, May 2013

  Painting, drawing and music lifted her spirits so I would start the day by using those to gently coax her into a better mood. So I cleared all the surfaces in the kitchen, laid out Iris’s music books and instruments, and played music from a CD. I encouraged Iris to dance, to move and to use the instruments in between her painting sessions. Gradually we saw our happy Beanie come back to us.

  ‘Let’s go for a bike ride.’ P-J had finished his work for the day and was ready for some fun.

  ‘Good idea. It’s going to clear up this afternoon. The weather forecast said sunshine.’

  ‘OK, I’ll wrap her up for the ride and she’ll be all warm and cosy. Even if it’s sunny, the air will still be cold.’

  The wind was blowing, but the sky was blue and the sun was out, so the three of us were happy as we rode along the towpath. The water of the canal shimmering in the light and the beauty of the autumn colours were having a delightful effect upon Iris. She was incredibly relaxed and happy, a relief after the unsettled week. As we passed under a bridge and out of the other side, leaves fell all around us. Iris lifted her arms up high, her fingers stretched out wide and she turned to me smiling with her hair wildly dancing.

  In the evening I tried to settle her for bedtime but I could see there was no point, she was far too awake, still buzzing with happiness. We stayed up deep into the night. At midnight Iris was still full of energy. She led my weary body off the sofa and took me to her favourite nook in her playroom, where interlocking mats covered the floor, removable alphabet shapes within each one. The mats had been bought in the hope of them being educational but I also loved the safety aspect. She guided me to the letter ‘A’ in the far left corner. Carefully she took the letter out of the mat and said ‘A’, then put it back into position. She pushed on my leg to move me over to the next letter and picked it up, saying ‘B’ and so on until we got to ‘H’ when she wanted me to say it. I was shocked; this wasn’t a game we had practised. I didn’t feel tired any more: I was flying high on the back of this new discovery. Iris didn’t only know her alphabet but she could also say the letters to me unprompted. As she finished she was calm and peaceful but her face was pale with dark circles round her eyes. I could see that this had been a massive effort for her and she was exhausted, so I carried her over to the sofa and a few moments later she was fast asleep.

  I could hardly believe it. Iris had managed to learn her alphabet, I knew that it was expected for her age at four years old but being able to do so without being able to talk and easily converse with others was an amazing achievement. She had been memorizing the sounds and shapes, teaching herself through the iPad apps and books. Like the golden leaves, language was gently falling into place, forging pathways like a network of branches, each leaf falling and leaving behind a path that was now free.

  Over the next few days sounds of alphabet letters filled the air. There was a melody following me from room to room. Iris was speaking and I could not stop smiling. Over that week following the midnight alphabet session she had immersed herself in language, finding it where ever she could: books, games, iPad apps, television, the piano, art and us. Her tenacity and strong-willed eagerness from the moment she woke till when she fell asleep took my breath away at times. For someone so young to be filled with a determination that could be compared with an Olympian was incredible. Of course there were ups and downs, quieter days and frustrating days, but she was gaining momentum and growing in confidence all the time.

  Her vocabulary was expanding quickly, she was soon able to say hundreds of different words and then one day I found a more reliable way of hearing them. Iris leant against me with her arms draped round my shoulders as I knelt before her work table in my office. I picked up a stack of cards adorned with short words, which we spelt out carefully one by one and I heard her voice saying words like ‘at’, ‘on’, ‘up’ and ‘see’. I wrote them on a piece of paper and she repeated the words. She was learning to read. I could not believe how quickly we had been transported out of her almost silent world. It felt like a dream. There was a mountain of catching up to do, and so much for her to overcome, but Iris loved it. Through getting Iris to read, I could now hear her voice and the delightful daydream of one day chatting to my little girl and hearing what she thought and felt was so close I could almost touch it. Her communication skills improved dramatically after that day, not to the extent of actually being able to chat to me, but she was verbalizing names for objects, textures, colours, animals and some small linking words. It was still frustrating at times; when she was upset all those skills seemed to disappear and she would just repeat a word that she had been using, but it would have no relevance to what she wanted. But when she was relaxed and happy we saw great improvements. She would comment upon things, the life around her, the wildlife down at the canal: ‘Duck, moorhen, bird, tree, good to see …’ she would say. If we were about to leave the house, I would say, ‘Let’s rock ’n’ roll!’ She would repeat this as ‘rag ’n’ roll’ and add ‘bike ride’. She said ‘night-night’ in the evenings and ‘goodie’ in the mornings and started to copy some lines from songs.

  The sun was low and the bike shadows danced on the wet road as we rode along, and Iris watched the shadow shapes change as we turned to the left. She twisted round and frowned at me if my shadow touched P-J and Iris’s ruining the perfect outline. Their separation seemed important to her so I stayed a little behind. Her long legs were dangling down, occasionally being nudged by P-J rotating the pedals, but she didn’t seem to mind; she was completely relaxed. A row of neatly clipped yew hedges lined the road like soldiers standing to attention and one of them caught Iris’s gaze. A robin was jostling its feathers in a pool of light right at the top of the column. He cheerfully viewed the world in the warm sun on this wintery morning. After our bike ride and a hot cup of milk Iris led me into the kitchen to get the paints out. This was already a good day and as the paint flew all over the kitchen I knew most people would be disgruntled at the prospect of the clean-up but I didn’t care: colour was everywhere and happiness filled the air. She was in a state of elated relaxation after such a vigorous painting session; I took advantage of that and we did some puzzles that she sped through, then some alphabet cards and numbers. She leapt from one number to the next along the sequence of large foam numbers that I had laid out on the floor, saying them as she jumped. On days like this one the decision to educate Iris at home seemed like the best in the world and I felt like that robin in the sunshine. Of course, it wasn’t always that easy and the enormity of what I was taking on and sometimes all the work ahead felt overwhelming.

  Late that evening I turned the lights down in the playroom and encouraged Iris to settle with me on the sofa. The hall light was on and she noticed her shadow against the wall in front of her. I realized in an instant that adjusting the lights had triggered a new game and bedtime was sailing off into the distance. With some simple manoeuvres of her body she tested the shadow: a wave, a jump, hand on head and hand on hip. Then to my surprise she imitated a bike in a sitting position, using her hands to rotate like a wheel or the pedals. Imaginative play and copying wasn’t her strong suit, so it was a joy to watch, and we both giggled at the shapes being created on the playroom wall.

  Our lives were filled with so much joy and happiness – in nature, out on the bikes and with Iris’s art – but as if to balance all this new problems were arising. Iris started to find bathtime very difficult. Washing her hair became a distressing event and sometimes I couldn’t even get her in the bath tub. In fact, as soon as I placed her in the bath she scrabbled at me madly, scratching and screaming, and then as I tried to wash her hair it was as though I was causing her pain. She became like a wild animal: frightened, desperately trying to get away, and many times it was a battle that I just couldn’t cope
with. Afterwards when Iris was dry and calm again with her books on the sofa I would cry alone upstairs. I struggled to manage those feelings. I longed for the days when she loved having a bath to come back, and I daydreamed about how it had once been – us having a warm bath together, her lying against me with her head resting on my chest – a peacefulness that now seemed so far from us.

  She also obsessed over keeping her socks and shoes on too, which added to my challenges as I tried to slip them off after she had fallen asleep. We tried our best with all sorts of techniques to help but most failed. It was as if we had stepped forward in one direction, then something else fell apart in another. But when things fell apart it would have effects upon the other advances we had made. She wouldn’t sleep as well, for instance, so I was more tired and struggled to manage everything. That’s why it was important to try to deal with the small issues as soon as they arose as they could so easily spiral out of control. But some things needed time and I needed to be more patient. There had been improvements with the clothes on her top. She tolerated wearing a blue cape, a beach sarong that my mother had given her in an attempt to keep her warm on one of our Friday lunches. We had been trying all sorts of materials to see if any were more acceptable to Iris than others, even resorting to my old dressing-up box with its velvet capes, silk scarves and many other tried-and-tested clothes.

  ‘Try this. It’s soft and she might like the colour. I just found it with my holiday clothes and I don’t need it. There’s so much blue in her paintings … It might just do the trick,’ my mother had said, draping the cotton beach sarong over Iris’s shoulders.