Iris Grace

by Arabella Carter-Johnson

  Planning was well underway for Iris’s home education. We didn’t want her to miss out on any of the opportunities that she would have had at preschool and we wanted to prepare her for the following school year. I found out about all the activities that were on the curriculum. I would need to teach her numbers up to twenty, her alphabet, learn about shapes, colours, some basic phonics and a whole lot more. And, of course, I also wanted to get her speech going. Financially the thought of hiring private therapists to work with Iris once a week was a worry, to the point of me not knowing if we could afford to go ahead. I will never forget the kindness from my aunt Celeste who lightened that load. Her generosity meant that we could pursue my search for the right therapists and I could photograph fewer weddings, giving me time with Iris to educate her at home. Celeste was there not just for Iris but for me too. She wrote to me, reminding me to look after myself and that she was there for me, and whatever I needed to ask for help. I needed to hear that; just knowing that she was thinking of me helped me not feel so alone.

  By the end of October I had found a brilliant local occupational therapist. Becky was just what Iris and I needed – strong, knowledgeable, positive and a realist, but behind all of her strength she was as sensitive as they come and knew exactly how to be with Iris. How to hold her, what movement or pressure she needed to calm her. An expert in the senses, she taught me so much about how to help Iris regulate her system. Iris needed to effectively use all the information from her senses – vision, touch, hearing, taste and smell, as well as signals from the inside of her body: movement and her internal body awareness. Sometimes these could be confused and, therefore, were disorientating for her. All this input has to be registered by sensory receptors and processed in the brain, which stimulates a response. But at times we could tell this wasn’t happening and she became overwhelmed or frustrated. She would experience both under- and over-sensitivity. Our aim was to try to allow Iris’s system to respond in an adaptive way that wouldn’t cause her stress. With Becky’s help we developed a series of exercises called a ‘sensory diet’ to help Iris with various issues at different times of the day. Sometimes she would need to bounce on the trampoline or on the therapy ball, to have deep pressure sensations through bear hugs, massage, joint compressions, brushing and rolling; while at other times she would need to be held, wrapped up or lie under a beanbag. All of this had a remarkable calming effect upon her. I learnt how to use these exercises and when Iris needed them. Becky showed me all sorts of ways that I could use different sensory play with rice, pasta, water and bubbles to help with Iris’s sensitivities. She also brought games to play that would gently desensitize her from louder more unexpected noises and other games that encouraged joint attention. We worked on transitions between activities, rewarding Iris for her good behaviour and ignoring the bad.

  Becky worked with me on a gradual plan to develop Iris’s abilities to follow my requests, to be more flexible towards tasks and transitions. Iris had become rigid in her behaviour, and things were sliding out of control, so every week Becky would work with her, moving from activity to activity – all the time encouraging her speech with basic speech-therapy techniques and motivating her to ask for ‘more’ or to count as they played together. She also wanted Iris to practise blowing bubbles through straws, to help with breath control. Iris had no problem with fine motor skills so some of the games would be more about other issues like noise. Becky would bring toys that made noise but give Iris something in return, all working towards getting her to become more flexible with everyday life. Through these various exercises her senses gradually calmed and she started to self-regulate her system. At first, sometimes in a whole session Becky would only get snippets of time, little bursts until Iris pushed her away and needed some space. In the gaps between, she would talk me through techniques and hear more about what had been happening, how Iris was doing. She was so in touch with Iris and her current situation; it was incredibly refreshing for me. I felt like we were in this together, working harmoniously on the same goal. And when Iris was ready Becky would continue. I was no longer alone and it was a fantastic feeling. For many months I hadn’t properly understood why Iris was so sensitive or how to help her, so to get the help she needed felt wonderful.

  Becky did also have a tougher side, a more realistic outlook on life that I needed to hear. She made me realize that Iris needed to manage in the world, that I needed to prepare her and that meant going out more and helping her achieve more independence. I needed that reminder. When you are living it you are in so deep, so totally consumed by it that you lose perspective. The isolation would creep in once again if I let it. I hadn’t been going out with Iris very much as it had become difficult again. Our weeks were based predominately at home or at my parents’, and I was starting to feel the effects of cabin fever. Iris had become so controlling that for most of the day we let her decide what was on the agenda, what was on the television, what toys she played with, what activities she did. I needed to turn things round to be more balanced. It was one thing following Iris’s interests and building on her strengths, but we had fallen into a pattern that was unhealthy – not good for Iris or us. The series of short-term fixes – letting her watch the same cartoons, listening to the same music over and over, and her insisting on keeping certain objects exactly where she put them – had become habitual. These would lead to much bigger problems if we didn’t work with her on this and help her become more flexible. We needed to move forward, to keep moving forward no matter how hard life got, to keep control of Iris’s behaviour and not to let it rule our lives.

  Iris’s reaction to music in her therapy sessions changed over the weeks. At first she was transfixed as our talented therapist Elizabeth played, mimicking Iris’s mood, copying sounds she made and improvising a tune to encourage Iris to respond. It was as though Iris was transported into the music, her fingers feeling the music like she did with the wind. Over time she became more responsive and interacted with the instruments, copying a tune or joining in with Elizabeth, who would create a game from the interactions and encourage Iris to play with the selection of percussion instruments she had in a bag beside her on the sofa. Some weeks Iris would need to cry and Elizabeth used the music as an emotional outlet; she would respond to Iris with her violin or the piano to let Iris know she understood her feelings and that it was OK to let them out, but then she would make her tune more comical and lively and Iris’s mood would follow. It was incredibly interesting to see how powerful the music was and how quickly Iris responded. Iris would hum in response, and after a while she even said some sounds and words, which would then be included in the song. So if Iris said ‘bee, bumblebee’, Elizabeth would repeat it, then tell a story about a bee with her music and sing a song.

  Iris didn’t want me to leave her at first so I sat quietly at one end of the sofa with Iris at the end closest to the piano. It was hard not being involved when she started to say a few words; I wanted to give her a giant hug and a kiss, but Elizabeth needed me to stay quiet so I wouldn’t distract Iris. My heart would fill with pride to bursting point as I heard these words. They were few and far between at first but as the weeks went on we heard more, which was so exciting. It always seemed to happen when Iris was relaxed and swept away with the music. It was like a conversation but with instruments, singing and words and without the pressure of a normal face-to-face interaction. There was no right or wrong way and Elizabeth quickly learnt when Iris just needed to have some time to listen and when it was OK for her to move closer and encourage speech, movement and music. She could pull Iris out of the darkest of places at the end of a long week and some weeks Iris would dance in delight as she played her fiddle, but there was always the same effect afterwards. Her mood would be improved and she would be easier to work with, and I started to love the music too.

  In December I found a dietician, and I learnt so much from her about what foods to give to Iris and how to balance her blood glucose levels. I had been giving Iris too
much wheat and fruit in the later part of the day, even a banana in the evenings, which wasn’t helping my case at bedtime at all because Iris was so full of energy. She was on a healthy diet already but I needed to increase the amount of vegetables, keep up the home-cooked meals and be more careful about the positioning of her food throughout the day to encourage the behaviour that we desired. We began to give her more fish as there was a concern about a possible fatty-acid deficiency that was linked to her dry scalp, hyperactivity and poor communication. We also bought organic produce wherever possible. I lowered her wheat intake and cut out as many sugars as I could. Iris only drank milk or water so that wasn’t a problem, but I was giving her too many biscuits, so I swapped to healthier options for her snacks. She became less erratic and her sleeping improved a bit, which I’m sure had a knock-on effect for every other therapy we were trying. She was more responsive and easier to work with if she had slept and was eating well.

  We continued to take Iris out in nature whenever we could and gradually our happy little girl came back to us. She was still fragile; it didn’t take much for us to see her bolting off to the sofa and picking her lips and she still found it hard to be affectionate with P-J and the rest of the family. A great many times she seemed to push everyone away, still needing her own space. She continued to hug me but generally only when she was frightened or very tired. It was going to take time for her to trust again and for us to regain her confidence.

  But there was one new issue that had arrived so suddenly that I felt sure it was just a phase and would pass. Iris didn’t want to wear tops any more. She preferred to be naked from the waist up. She would wear them when she was outside, which was a relief, but as soon as we were in everything was stripped off. It didn’t matter how many times we put them back on, off they came again. I worked with the occupational therapist to help with Iris’s sensory issues regarding her clothes, including using a technique called ‘brushing’ – the Wilbarger Protocol. It involved giving Iris deep-pressure brushing with a soft bristled brush followed by joint compressions, and the procedure was repeated every couple of hours. It really helped in regard to getting her top on but unfortunately it didn’t last; Iris would just take it off again after about a minute. But with everything else settling I didn’t feel too worried about it.

  At Christmas I managed to keep my promise from the previous year. We made it all more manageable: wrapping paper was history and her presents were bundled in material with soft ribbon bows. I decorated the house over a few weeks, leaving some rooms as they were before to provide spaces where Iris could go if it got too much and focused on some key elements like a beautiful Christmas tree that we decorated together. I bought lots of Christmas books so she was prepared and understood what was happening. On Christmas morning she played with her presents under the giant Christmas tree, looking out into our garden. She could see her old friend the tree stump, and with music playing we took a much gentler approach in our pyjamas. The fire was lit and we snuggled up on the sofa with duvets while Iris showed us what Father Christmas had brought her. I didn’t have the pressure of entertaining or cooking, and there wasn’t a distressing catalogue of disasters that I had to fight against like the previous year, so we could enjoy ourselves and I was rewarded with the most precious gift of all: the three of us together, laughing and giggling, snuggled up under those oak beams. We went over to my parents for lunch, but didn’t stay too long and we made sure that we considered how Iris was feeling; if she needed space and quiet, we gave it to her. By taking the time to prepare and to understand we were able to make it a magical holiday.

  The damp cold days before spring the following year were brightened by the obstacle courses that still reigned supreme in the corridors and the garden room. Every surface low enough was covered with paper, pencils and crayons that were always out and ready to be used. If Iris couldn’t express herself yet through language, then art would be the answer. Each day we saw Iris becoming more playful, more engaged, but even with my very best efforts her speech was not improving as much as we had hoped. Time was marching on and Iris’s lack of verbal skills at three years old was increasingly worrying. She had made some improvements in her music therapy when she said the odd word, which we celebrated, but the impatient side in all of us was starting to show. Her speech was unreliable; sometimes she would say some sounds and respond with a word, but mostly she was silent apart from her humming noises. She still communicated with us through her body language and by pointing at what she wanted. She was able to use those skills with people she knew well, but she didn’t react well to people she didn’t know. If we really encouraged her, we might get a ‘more’ for more bubbles when she was working with Becky or counting up to three as I pulled her down the mattress slide but it was slow progress compared with her peers. Most children at three years old know up to one thousand words and are able to tell simple stories and recite nursery rhymes … Iris could say around twenty words and even they weren’t on command. We all had to work so hard to hear them, including Iris. It was frustrating as I could tell they were all there: locked inside, just waiting to come out. But there was somehow a blockage, a crossed wire, something … We didn’t know what and nobody did. We saw a few more speech therapists and they always suggested the techniques that we were already using so we carried on, focusing on her play and activities linked to the curriculum.

  We had just had a very successful day with sand, when I drew letters and Iris started to say the letter out loud. Next was painting, so I prepared the easel that had been given to her by her grandparents that Christmas. I had high hopes for this activity; she had been having so much fun with her crayons and all the stories I told through my drawings that I felt certain she would enjoy herself and that it would provide many opportunities for me to fit in some speech therapy.

  As I mixed the colours in the children’s plastic painting pots Iris was getting very excited. She was bouncing up and down on the trampoline in the garden room and darting back and forth to the easel. She had been fascinated by the roll of paper that came with the easel as it was different from the one I had been taping on to the table, and of course we had an Andrex-puppy moment – Iris pulling at the paper so it tumbled across the room and I had to roll it back up and start again. I showed her by dipping a brush into the paint and making long strokes across the paper before us. She stood patiently beside me and then had a go. The moment the paint started to run down the paper she got furious, and the thin children’s paper started to crumple and its shape distorted from the watery paint. She started to cry and threw herself to the ground with the paintbrush still in her hand. The blue paint splattered over the floor and on to Iris’s arm. This made everything that much worse – she wanted the paint off immediately as she couldn’t stand it on her skin – so I ran into the kitchen to get a tea towel and when I came back she was over by the window trying to open the door, crying. She wanted to escape from it all and I felt awful. This was meant to be a fun learning experience, not a tortuous affair that led to upset. I did my best to clean her up and then opened the door and she ran out into the cold air. I noticed she had also knocked over the red paint pot. Stupid pots, they were too light and flimsy. I put away the easel and paints, feeling disheartened. As I was clearing up some paint that had dropped on to the wooden floor I thought back to what had worked before – the large sheets of wallpaper liner taped on to the coffee table in the playroom for drawing with crayons. She had loved that: happy hours were spent at that table and I felt sure that paper wouldn’t distort quite so dramatically under the weight of watery paint. And if it was lying flat Iris would have more control over the paint and it wouldn’t dribble down the paper. I decided to change just one part of the activity – the medium – from crayons to paints, and keep everything else the same: from the position in the playroom to the wallpaper liner taped down so it was secure. Like the easel those plastic pots would have to go; I would use mugs instead: much more stable and familiar to Iris.

 
; The next time, with the playroom suitably covered in old sheets to protect the furniture, I laid out some mugs filled with paint for Iris and I let her decide when to come to the table. I didn’t need to wait long before the paper was filled with colour. She seemed so precise about the way she was painting: a quirky mixture between free and considered. She used lots of different techniques – swirls of colour, zigzags, splodges and dots – to make marks and I was surprised at how little ended up on the floor, and absolutely none on her. The colours were also clearly separated and not all smudged together. While the painting was drying in my office it occurred to me how attractive it was for a first attempt, so I photographed it to commemorate the joy we had found in this new activity.

  The next few days followed a similar pattern. Her interest in painting intensified and the amount of time she would spend on each extended. This new fascination was opening up all sorts of opportunities for me to interact with her and she was so happy. The insecurities and defensiveness that usually surrounded social situations faded while the brush was in her hands. She bounced with excitement, listening to me as I talked to her about the colours and the formations of the watery paint. She didn’t crave her cartoons or books any more. It seemed I had found another key into our little girl’s world. We had been making wonderful advances but this was in a league all of its own. Feeling more motivated than I had in a long while, I made the decision to let her paint as often as she wanted to, letting her explore this new avenue of expression. I rearranged the furniture in the kitchen and made a space for the table.