With the information I learnt about what she liked and what was motivating her I was able to fill her life with those things. She loved books so we bought more every week on topics that she was interested in. Animals were a firm favourite and she also loved books with textured surfaces. As our library expanded so did the array of sensory toys and other homemade things like tubs of coloured rice, sand and play-dough. They were like little precious keys into her world, allowing me to get closer and form a stronger relationship with her. It felt great to be doing something positive and for it to be working. Her eye contact was improving and although there was still no improvement at all in her speech and her relationships with others I could tell we were making vital steps in the right direction. She welcomed me beside her and enjoyed our time together; she even started to initiate some joint attention with the use of a water pen on an aqua pad. This was a rather addictive addition to our kit: a pen filled with water and a white pad that turned dark blue as the pen touched its surface. As the water dries the marks disappear and you have a fresh pad to work on. Simple but effective. An everlasting doodle pad with no mess. Iris would prompt my hand to make a mark, then she would take the pen and have a go, passing the pen back to me when she had finished. We were working together, and although they were small things probably undetectable by most or which would be taken for granted, to me they felt huge and I celebrated them. Each time I was accepted and she played alongside me or wanted me to be involved I felt like I had won a fantastic prize, a funfair and celebrations happening in my mind. I wanted to do a lap of honour running around the room, but settled for smiling and giving Iris some praise.
Iris was intrigued by pencils, pens and crayons, playing with them for many hours a day. Most of the time it seemed the walls were being covered in some sort of toddler mural and I had lost count of the amount of times I had repainted. With my perceptions altered, I saw that this was clearly an interest and a strength that I could encourage. I just had to figure out how I could redirect the interest from our walls. I found large rolls of wallpaper liner in the local DIY shop and cut pieces to the same length as the wooden coffee table and then taped down both ends. Iris thought this arrangement was perfect and she scribbled away for hours. She would cover the paper completely with multicoloured swirls and circles, all interlocking and overlapping each other. She bounced on her tiptoes, humming sometimes. She would even use both hands, both busily working away, spreading the colours blissfully, free and so happy. The table covered in paper had been a marvellous success and the walls stayed spotless for many weeks, but it didn’t last for ever.
My eyes followed a blue crayon line along the wall, zigzagging all the way to the door frame and then making a gentle loop-the-loop back to me. Iris must have been here not that long ago – only moments before this wall had been untouched. Just as I was thinking about how once again I could explain to her that ‘we do not draw on walls!’ I noticed the change from the angry craggy mountain range to smooth, petal-shaped loops. It hinted at a delightful shift in her mood. Always drawing information from anywhere I could to understand and help her, I recognized this as another opportunity to connect. So I took it. The basket of washing was shunted to one side and replaced with paper and pens. Together we peered over the paper. I started with a smiley face and passed the pen over to her. She giggled and, her eyes meeting mine, she looked down, drew a straight line, then passed the pen back to my hand, guiding me to the paper. I drew a stick man and added the ground, a tree, a bird in the sky and a sun with triangular rays, telling a story as I went. We took turns adding details to the picture, Iris happy with this arrangement for a while. We were working well together, understanding each other, and then a car pulled up, the heavy sound of the gate, and the disturbance and intrusion into our world closed the window of opportunity and she moved away. The washing basket was back in my arms again but my thoughts were with the stick man and the next story I could tell. I wanted to use this latest interest to interact with her so I drew. I drew stories, and masses of them. They were just with stick men and funny animals, but they proved to be vital in moving Iris’s attention on to what I was doing and allowing me into her space even more. All these little steps gave me the hope and the energy I needed as I did my best to manage my business, life at home, Iris and this new project that I hoped would have an immensely positive impact on all of our lives.
We knew how much nature and the garden already meant to Iris and we were on a mission to bring some more happiness back into our lives. The previous months, with P-J’s father passing away and the discovery of Iris’s condition, had been hard for all of us and this project was something new and positive to focus on. The plan was to knock down the ugly laundry that hogged the beautiful view at the back of the house and in its place build a barn-like structure out from the kitchen that would become known as the garden room. We knew a build like this would be very difficult for Iris in the short term but the long-term benefits would make it worthwhile. It was to be a living space, occasional dining room, playroom, music room – one of those spaces that I hoped could be anything we wanted it to be. I needed more light and the feeling of freedom you get from looking out on to nature. Iris was responding well to my methods of interaction but it would have been much easier if we had a bigger space to work in. I had also been noticing how Iris was easily distracted from our activities by the road. If a car parked up, it would destroy any connection we had made. She would be nervous about the gate opening and shutting, and I couldn’t wait to work with her in a space away from all that on the other side of the house. Also, because Iris got so distressed while we were out and about meant that for many weeks we hadn’t ventured out very much, apart from to my parents’ house and walks out in the countryside. It wasn’t that I was embarrassed by her outbursts; it was more the way they took their toll on all of us later on. If she had been upset by something, I could say goodbye to getting any sleep that night, as she would be restless, which would affect the following day. It was a domino effect and I tried everything I could to keep all the pieces upright, but that in itself was destructive in its own way. At times the isolation was hard to handle. It was like life was happening, thriving to a constant beat beyond the walls of our home, but we were standing still, alone.
Over the summer Iris spent more and more time out in the garden, inspecting the wild flowers that were in full bloom. She was so interested and intrigued by all the sounds and sensations that surrounded her. It was as though she was in a jungle of petals and butterflies; in patches they towered above her. She made her way through, taking flowers by their stems and bending them down to her height to take a closer look. Her little index finger on her right hand pointed outward gently, feeling the surface of the petals and she would hum excitedly when she found one she loved. A single object was always in her left hand, like a solid comfort blanket she kept with her at all times.
The latest permanent fixture was a pink ball, a plastic pink ball from the ball pool, but it had to be one in particular and she would know right away if I had lost it and replaced it with another. I couldn’t tell the difference between ‘the one’ and all the others, but there was obviously something very special about this particular one that Iris liked. She would take it everywhere with her and I had to stretch all the cuffs on her clothes so I could change her tops without causing her distress while she kept it in her hand.
As time went on and I was able to connect with Iris more through her interests and love of nature I began to feel that maybe P-J was right: she was just developing at a different rate from other children. Then there were occasions where I felt like her potential diagnosis was as clear as day. However, even with all our best efforts, Iris found it difficult to enjoy her second birthday. It was, of course, a social occasion, with many family members, and she avoided everyone as best she could. Even the chocolate Tom and Jerry birthday cake didn’t improve the situation. She ignored most of her presents and was willing everyone to leave her alone. Once they had al
l left she ran freely around her grandparents’ garden with her balloons, giggling, content, totally at ease in nature and away from the social interactions. We watched her from the kitchen, smiling and laughing at her running so happily across the grass, but I could tell both P-J and I were thinking the same thing. Our thoughts were about what this meant, how we could help her and why this was happening.
By the autumn the build had started and as we predicted it was a difficult time for Iris. She found the noise of the digger and all the various deliveries distressing and we shut ourselves in the far corner of the house while P-J managed the builders. So, to avoid the noise, we spent more time over at my parents’. My parents had bought a new black Labrador puppy called Indigo, Indy for short. She was adorable and she loved Iris. Yet the connection wasn’t quite there on both sides: Iris didn’t like to be licked, but she was amused by the puppy and tolerated her bouncy play. It was wonderful to watch Indy try to interact with Iris; it wasn’t always successfully but I appreciated her efforts. As soon as we came in through the front door she was there to welcome Iris and she would bring her toys, reaching out to her whenever possible and never appearing to feel hurt if Iris rejected her. I couldn’t help but envy the dog’s resilience about being dismissed. It was so unlike the rest of us who would feel sad about being pushed away. Yet she didn’t show it, not once; she just tried again later with the same buoyant nature.
I decided to take on that attitude. I knew that Iris loved us dearly but just couldn’t show it in the way that other children so easily could. Instead we would have to be patient and keep trying to reach out to her however we could. This concept wasn’t easy for everyone to take on board. My father couldn’t help but feel disheartened every time he was pushed away. No amount of explaining would help; he needed time. One week she would tolerate and even enjoy being more tactile with him, allowing his hugs and kisses or wheelbarrow rides around the garden, then other weeks she just couldn’t handle it. My mother was incredibly patient, more than all of us, and waited – she knew that Iris would come to her when she was ready. And the more I worked with Iris, the more I saw improvements with her relationship with P-J. They were only hints at first, but they gave him hope. If I was away photographing a wedding, Iris would transfer many of the skills she used with me to him. Unfortunately, when I arrived back her loyalties would switch straight back to me. For the majority of the time I was Iris’s rock, her translator. I understood her more than I had ever done before, and I began to hear her like I used to listen to the horses. I could read her body language and started to get better at seeing when I needed to take a step back, reducing the likelihood of a meltdown. I could see that for now Iris could only manage to interact with one person at a time in this way and I understood that these skills were new and still very difficult.
The inspiration for the type of extension to our home came from the time we had spent in Venezuela. Our house there had provided safety for us. The high ceilings, strong beams and the views of the Andes through its huge triangular windows had given me courage in uncertain times. Now I wanted that same feeling of protection for Iris. So we went for it: the whole gable end was glass; there was even glass between the king post truss. We found a builder and a carpenter to work on the project with P-J and he managed the build himself. The whole experience from start to finish was packed with highs and lows. P-J broke his finger, and there were moments when we just wanted to pack it all in, but then we would figure out the problem and see everything coming together again. In between calls to suppliers P-J battled on with chasing the doctor to try to get Iris’s assessment brought forward, and one day we received a letter giving us a start date for the three-day assessment.
It was December and the weather had been unusually good so the build was going well; we actually had a shot at being in there for Christmas. The plan was for P-J to carry on managing the build and I would take Iris to the assessment and stay with her. It was at a Child Development Centre in a city close by and over the three days we saw many different professionals in the field. The assessment was difficult for both of us. Iris was unnerved by many aspects of the main room. It was too hot and the fans blew balloons from the ceiling. There was constant movement to deal with. Once they were removed she settled, and at first it was about observing her play in the different areas set out, before moving on to different sessions with the different departments. All her endearing traits were noted, analysed and catalogued. The process was difficult to watch. Every time Iris picked up an object, she wouldn’t play with it like the toy was designed to be played with. She would inspect it in great detail – how it was put together, the texture, how it felt across her cheek, how it fitted into her hand, how it looked in different light, how it fitted in my hand, which hand she preferred it in. She was always silent; there was not a word or sound until something excited her and then she would flap her hands and hum. The doctor was making notes and I was willing her to put the plastic broccoli on to the plate or to pick up the tiny cup for a sip of tea – anything that would be more typical for a child of her age. They watched me feed her and made notes. It was a very strange experience, as if we were both being judged, and I couldn’t help but feel awkward. All the doctors and nurses were kind and understanding, which helped, but then it was time for more formal assessments where she was asked to do different activities, all of which she had no interest in, and the doctors found it impossible to engage with her. It was as if the doctors weren’t there or, as she made her feelings clear with wild screams and by running to the door, that they were an annoyance that needed to be dealt with.
I knew I should feel happy that they were seeing what I had observed, that they were taking her behaviour seriously, and that the most likely outcome was that they would agree that she was on the autistic spectrum, but all of a sudden it didn’t feel that way. I wanted her to ‘pass’ with flying colours. I wanted to be proud and for them to say ‘Nothing to worry about here. All is well, my dear, off you go home now.’ Of course that wasn’t the case and I left each day feeling more and more certain of what the outcome would be. We didn’t have to wait long for the diagnosis – the doctor had said that he didn’t want us waiting over the Christmas holidays – so on 20 December 2011 we went in for a final meeting to discuss their findings and to receive Iris’s diagnosis.
P-J and I were sitting close to one another on low uncomfortable chairs. The heating was on full, and it was unbearably hot in the hospital consultation room of the Child Development Centre and I could feel my cheeks flushing red. As the doctor talked to us, describing his findings from the three-day assessment before finally getting to the diagnosis, I tried to keep my breathing slow and regular, constantly fighting the urge to cry. I didn’t want to cry in front of this man. I respected him as a doctor; but although he was obviously knowledgeable, I didn’t like his cold manner, his depressing outlook on life. If I let him see how I felt it would spread like wildfire within me. I couldn’t open myself up to that, so I stayed calm and took some notes on the file of papers we had been given. I knew P-J and I both needed answers, but now that we had them it didn’t feel any better. In time that would change, but at that moment it felt as though I was being suffocated by information. Our daughter was autistic: a lifelong condition with little known about its cause and no known cure.
‘There are an abundance of therapies you can try,’ the doctor said, ‘and you can try any that are safe for her, but in my opinion very few work.’
With those words I felt like I was being crushed. Over the past couple of months, while we waited for this assessment, I had worked with Iris and had seen real improvements, and had truly believed that we were making progress and that our methods were working to a degree; but his words seemed to belittle everything I had worked so hard on. The doctor read out some of his conclusions: ‘Iris demonstrated early-learning and language skills of a nine- to twelve-month-old baby at two years old. She has difficulties with social interaction, social communication and repetitive p
lay. All these behaviours confirm a diagnosis of Autistic Spectrum Disorder.’
He then drew a line on a piece of paper, telling us this was the spectrum. At one end he wrote the words ‘severely autistic’ and at the other ‘Asperger’s’. He made a mark close to the severe end and said, ‘She has a significant impairment in speech development, language and early-learning skills.’ He repeated that as I stared at him and the look in his eyes hurt. I could tell he needed me to take this on board properly, to believe and accept it. What he didn’t realize was that I had already come to terms with the likely diagnosis. What I needed was hope, not to be told that she may never speak. I needed him to see the light in Iris that I saw when I was interacting with her at home, while I was drawing or watching the way she reacted to nature, her unbelievable concentration span and her interest in books. These were all strengths, yet it was as though they counted for nothing. Even worse than that, they were used as cons and I couldn’t bear it. I hated that piece of paper. I wanted to screw it up, to burn it and to never think of it again. I realized it was irrational. We were there for one purpose: for Iris to be diagnosed so we could get her the help and support she needed, but no amount of rational thinking would mend the sadness sweeping through me. As I looked at the doctor I felt angry: angry at him for being negative, angry at all the doctors for not finding any answers for us other than a name, for what we were facing and for instilling the belief that nothing could be done, that all hope was lost.
Iris Grace Page 6
