Iris Grace

by Arabella Carter-Johnson

  She was losing many of the social skills that she had had in the early days. There were times when she would giggle hysterically at P-J as he did something silly like balancing something on his head or tickling her, and she would occasionally smile and look straight at me through the lens of my camera. That had all gone. She now ignored me when I tried to photograph her. I was finding it harder to reach her than ever before. Even our hugs seemed brief, mostly just when she was exhausted and needed to sleep. When I tried to get her to look at me she would always turn away or look down at her books. I wondered if that was why she loved them so much; they gave her an out, and opened a door into a place where no one made demands upon her and where she was free to explore without pressures. Everyone seemed so pleased and accepting if she had a book in her lap and it enabled her to have some space and to avoid face-to-face contact. I couldn’t even remember the last time I had heard her say anything or even attempt a word.

  Then one night I found the answer. The house was quiet, Iris was finally asleep and I prepared myself for what had turned into my nightly ritual, climbing into bed with P-J’s iPhone where I could get access to the internet along with the comfort of a soft duvet. I was searching for answers, knowing in my heart that something about Iris was profoundly different from other children.

  Kupros, acrylic, September 2013

  Constant questions and frustrations ran through my mind, driving me on trying to find a clue. It was about 2.30 a.m. and I felt hopeless and alone. I read about a child on a parent forum who sounded remarkably like Iris. The post was about another two-year-old. I read on, leaping through posts from other mothers until I saw a list of signs referred to as ‘red flags’. My eyes filled with tears – if I could have physically ticked the items on this list, I would have ticked nearly all of them – until, unable to see properly through my watery eyes, I reached the word ‘autism’. I didn’t understand the full meaning of it but I knew enough to realize that this would change all our lives. The future I had in mind for our daughter vanished and was replaced by fear and uncertainty. I woke P-J up immediately.

  ‘What’s wrong?’ P-J put his arm on my shoulder and looked at me. My eyes were swollen from crying and I wiped away my tears and gave him the phone. ‘What’s this all about?’

  ‘Just read it.’

  As he read, he sat up on the bed, then got up and started to pace around the room. ‘But I don’t even know what it means. What’s autism?’

  ‘I know. It’s OK. I didn’t either. Well, I thought I sort of knew what it was, but I had to look it up.’ I burst into tears again. ‘Most websites say there’s no cure; it’s a lifelong condition. Nothing we can do. But there must be something. There’s got to be something.’

  ‘Look, we don’t even know for sure yet. We might be wrong. Iris could just be slow at developing in certain areas.’

  ‘Look at the list. This is the answer we’ve been trying to find. I know it is. She doesn’t respond to her name, avoids eye contact, doesn’t speak and gets upset with minor changes. She’s obsessive, flaps her hands when she is excited, gets upset by sounds and other senses, plays alone, has no interest in others. There’s no “pretend” play. She’s hyperactive, she has sleep issues …’

  To my relief he didn’t brush it off with a positive spin. He listened and I could tell how serious he was. ‘Right,’ he said, ‘I’m ringing the doctor tomorrow. We can try to get a specialist to see her. There must be someone who can help us with this.’

  It was as clear as day what I had been observing all this time, and now he could see it too. I finally fell asleep with the assurance that in the morning we would follow this up and make an appointment for Iris to be assessed.

  Having a plan in our minds and following through with everything that needed to be done to get Iris diagnosed was one thing, but what we hadn’t anticipated was ‘the system’ – the frustrating pace and the amount of chasing we would have to do to secure appointments and assessments to get her diagnosis. There was talk about getting Iris a ‘statement’ for school so she could get the support she needed, and for us to have the formal diagnosis so we could access the speech therapists and occupational therapists that were available. I felt like we were being swamped as I waded my way through all the acronyms: ASC, PDD, HFA, PECS, ABA, TEACCH, DIR, SLT, OT, SI, PT, AIT … It was exhausting just reading the information when it was all so new to me, constantly figuring out what everything meant. It was as if Iris and I were struggling together in a world filled with information that was hard to decipher.

  I researched extensively on the internet and bought many books on autism, watched films, went to talks and became immersed in the topic. Piles of books lay by my bed with little torn-off pieces of paper sticking out at various pages, makeshift Post-it notes to mark vital information for me to remember. From what I could tell at that point, autism was a really hard condition to describe because it varied so much from person to person. Some would describe it as a grouping of three closely related developmental disabilities: impaired social interaction, impaired communication and restrictive, repetitive behaviour, interests and activities. In the books there would be a diagram of a triangle around the three groups and in the middle, where all these overlapped, was the word ‘autism’. It affects how a person perceives the world and how they relate to it. When someone like Iris walks into a room their senses are sometimes overwhelmed with the visuals. They notice tiny details, see it as a whole and everything in between, meaning that with added extras like people talking or sudden movements from other children they get upset and want to be alone. I was learning that Iris’s reactions to her senses were not uncommon and that much of her behaviour was a reaction to her environment. For example, the way she flapped her hands quickly when she got excited by something or when she felt happy. There was a term for that; it was called ‘stimming’, a release of energy with repetitive movements, allowing her to regulate her own system.

  I struggled with the idea of Iris always needing support and the possibility that she might never talk or be able to live an independent life. Every adult on the spectrum lived a completely different life, with abilities that varied as much as anyone else, ranging from having a fantastic career and a family of their own to being in supported living at a residential home, unable to look after themselves or communicate with others. I couldn’t figure any of that out then, how it would all work. Every time I thought of it I felt like bursting into tears. I couldn’t understand why this was happening and needed answers. But the more I learnt the more I realized that there weren’t any concrete answers. Every week there seemed to be new research out contradicting the last and with every new theory, a new potential cure. The emphasis always seemed to be about causes and a cure, which was also a difficult concept. If Iris was autistic, what part of her was that? What would she be like without her autism? When do you say this is an autistic behaviour, symptom or trait, and this is not? Did this come from me? I too struggle in noisy environments and P-J has some tendencies too. His mind easily fixates on a thought or certain way of doing things and he also stays away from crowded spaces. After all, we both worked from home running our own businesses. Was this inherited? If we had more children, would they be autistic too? So many questions.

  I read about what it might feel like if she was diagnosed. Parents described themselves going through a period of mourning, of saying goodbye to the child they thought they would have. This made me so angry. I couldn’t even contemplate the idea of mourning for Iris, as if we had given up on her. She was here. My incredibly perceptive, funny, beautiful, curious little girl was right here with us, and she needed us to believe in her. The very idea of it made me stay up into the early hours every night, learning and researching. It wasn’t that I didn’t accept the situation; quite the opposite, I was seeing things clearly and seeing the difficult road we had ahead. But I knew I needed to stay positive. I didn’t want Iris to miss out on any of the dreams we had all had for her and I was going to do everything i
n my power to make sure we gave her every opportunity possible. We would never give up, no matter how hard it got.

  Hiatus, acrylic, April 2014

  P-J came to my rescue many times and when I was too tired to manage all the paperwork involved he took over. The waiting lists were long for assessments and we quickly realized that if we were to help Iris we needed to act fast and on our own while we waited. We were told it could easily be six months before we got to see a specialist doctor, and that was relatively quick: some cases could take up to a year or more. This was frightening news since everything I was reading was confirming my thoughts on how critical early intervention was, and that the faster we moved on this the better.

  I found out about various techniques and therapies that could do no harm. Every night I would spend hours reading up on what I could do to reach Iris with a type of play therapy called Floortime and another called Son-Rise. They were therapies that resonated with me and sounded similar to how I had learnt to communicate with horses. The idea is that you use the individual’s ‘language’ on their level, building a bond by achieving a non-verbal conversation involving smiles, looks, pointing, gestures and pure joy over sharing a moment of interest together. These beautiful social communication moments can be missing or less obvious in children with autism. As with horse whispering, a technique I had learnt and used with my own horses, the principles are all about observing body language carefully. All a person’s actions are considered to be purposeful and shouldn’t be ignored. At first you follow the child’s lead, finding out what interests them, so I watched Iris and made notes about the nature, toys, textures, colours and items she spent longer inspecting or which made her bounce with excitement. I would fully absorb myself in the activity, gaining a deeper understanding of why it was motivating to her. I learnt about the simple pleasures of feeling texture, sitting beside her we would run our fingers gently over the surface of a copper-relief sculpture my grandmother had made out in Africa. I felt the cool metal, how smooth and pleasurable the sensation was, and the intriguing formations felt delightful under my fingertips. I enjoyed the perfect round surface of the balls in the ball pool and felt the weight of play-dough just resting in my palms or how sand felt as it poured on to my hand. Then I would move away and think about how I could use this information, how I could create an activity based on my findings that allowed Iris to enjoy spending time with me, playing alongside me using her interests. It was all about focusing on her strengths instead of her weaknesses and expanding on them. It’s a framework for understanding a child and creating a comprehensive programme tailored to their needs. Some aspects of the Son-Rise programme made so much sense to me: for example, the belief that children engage in what appear to be exclusive or repetitive activities for a reason. It could be that the child has a different sensory-perceptual system and needs to reorganize stimuli in a way that they can better deal with. These activities are seen as useful to the child rather than something to be stopped or redirected. With this in mind I made sure that Iris had plenty of places to jump and bounce. She seemed to need to do that and I knew that there must be a reason for it even if I didn’t know what it was yet. So we put a mattress on the floor in her playroom and a small trampoline in my office.

  My aim was broken down into parts. At first it was to reconnect: I needed Iris to accept me playing alongside her. She had become more accustomed to pushing everyone out of her space and even out of the room she was in. Pretty much the only time she would hold someone’s hand was to take them to the door and then she would run off back into the room. It was an amusing trick the first time but now it was becoming a routine. So that was first on my to-do list. Then I wanted us to do something together, focusing on the same thing and achieving ‘joint attention’. To begin with I would ask Iris to respond to me, asking for joint attention and to be involved, then the hope was that she would gradually initiate activity. It was crucial for Iris in starting to be comfortable looking at me and most importantly at my face. I could see that Iris’s verbal skills were never going to improve unless she was able to look at me and watch my mouth moving while I spoke. Her lack of speech, to my mind, was directly linked to her antisocial behaviour: her avoidance of interactions with others and that she found it so hard to look at their faces. She wasn’t picking up on all those language skills that babies and toddlers are constantly immersing themselves in when they require all of your attention. The long-term goal was to open up as many opportunities as I could for Iris and to encourage communication, but I knew I was a long way off all that. So for now I decided I would just learn about Iris in a way that I hadn’t tried before. I would follow her and try to understand her world instead of always trying to make her fit into ours.

  For many nights I had similar dreams: memories from when I was working with our horses in France. Our Arab pony Duo was an old hand at endurance riding, and his heavenly floating trot and easy-going nature meant he was a joy to ride and perfect for our horse-riding-holiday business. But when I fractured and compacted my vertebra I couldn’t ride him or the other horses. Being able to run the business, all the duties and work involved, were now impossible. I needed to start to think about selling some of the horses and that meant getting them all in top condition.

  To keep them fit I worked with them in the round pen: no equipment, just the horse and me. I was still in my plastic body cast and fragile, so didn’t want to risk any further injuries through one of the horses pulling on the rope or reins. Natural horsemanship was a great interest of mine and I read many books on the topic. Years earlier I had attended a Monty Roberts horse-whispering workshop in the UK. From him I learnt ‘Equus’, a silent language that is conveyed through the body and gestures. I had already been using the techniques in more subtle ways, so I decided I would make use of the rather grim situation and practise and learn more. If these were to be my last months with my equine friends, I wanted them to be great and for us all to get something out of it.

  Using ‘Equus’ is a combination of gestures and body language. Every move you make is observed by the horse as sound doesn’t play a central role in the horse’s communication system. Horses’ eyes can magnify five times more than a human eye and are highly sensitive to movement; they are very much visual thinkers, which is something as a photographer I could totally relate to. They constantly react to the image they see before them in a particular moment. It’s an essential part of their survival to be acutely aware of their surroundings, their entire environment, and to be distractible. It is why my accident happened: Tess had suddenly been scared of the bags in the bushes. This wasn’t her being naughty; it was an inbuilt response – to her those bags could have been a predator waiting to pounce.

  My dreams would fill with moments from those days and the connections I formed with our horses. Duo was my favourite to work with in the pen. I found him easy to understand and I learnt how to read his body language and to communicate with him through mine. After a while I didn’t even use my voice. I could request for a change in pace by looking at certain parts of his body, slightly changing the angle of my body to his and ask him to turn with just a slight movement of mine the other way. It was like dancing and he loved being understood and enjoyed the sessions. As each day went by, the easier it got, until I didn’t even have to think about it any more and it was as simple as having a chat with a friend on the phone. At first I would send him away to canter or trot around the pen and I would look for his gestures, beginning with his ears, which told me so much. Once he was listening to me in the pen, the inside ear, the closest one to me, would be locked on me. Then he would make his circle smaller around me, feeling safer. I would still keep up the eye contact and he would start to chew a little and lastly he would drop his head, almost touching the ground. This was what I was waiting for and as I took my eyes off his and lowered my arms, curving my body inwards, looking down at the ground, he would come over to me and stand quietly behind me, waiting. Without looking at him I would turn towards him
and stroke his shoulder and neck and then his forehead. This is known as ‘join up’. From here I could move in any direction and he would follow. I could ask him to go and exercise around the pen with ease. From that point I had his trust and working with him wasn’t work any more; it was a joy.

  Arien, acrylic, April 2014

  There are many ways to train horses. The most popular method seems to be to ‘tell’ them to do something, rewarding the behaviour you desire and punishing the unwanted response. No relationship is formed on this basis but it does generally produce the desired result quickly. There is another way and that is to ‘ask’ using their language. There is great delight in working together and respecting one another. I wanted that same feeling again, but with Iris. I know it may seem like a strange comparison, a horse and a child, but Iris had a similar flight response; she was reacting and responding rather than initiating. She had a phenomenal memory, was a visual thinker and her trust was easily lost. She was highly sensitive to her surroundings and like a horse extremely distractible in some environments due to her ability to see everything all at once and notice changes instantly. For a horse this is a survival technique, but for Iris it had drawbacks: she would easily become overwhelmed by her senses and upset by small changes. Also, like a horse, she was using body language and gestures to communicate. Using similar methods to interact with Iris would take time and rely heavily on my observation and understanding of how Iris perceived the world but I wanted to try my best and to see what was possible.

  Our at-home therapy sessions began with me finding my way carefully, following Iris’s lead. I would sit next to her on the floor and copy what she was doing. At first I would get pushed away and then slowly I was accepted. She even found it amusing and appreciated my presence. I was always careful about my eye contact as I knew this was difficult for her and I kept as quiet as possible. I started to learn when I could join her and how long for. I would be interested in and smile at the pictures she liked in her books, feel the textures on objects, bringing them up to my face like she did. I mimicked and followed her until I sensed that she had had enough. At first it was only playing together for a few minutes, but over time that increased.