Zin Zin, acrylic, June 2015
Then I was torn. I would probably have to go alone as a trip like this would be too much for Iris. James and Carolina talked to me about it and wanted very much for Iris to be there, for us all to come as a family. Carolina’s family had stayed in England before with my parents, and they hadn’t batted an eyelid at Iris wandering around topless and shoeless or when she flapped her hands if she got excited or hummed at something that intrigued her. No judgements, just acceptance, and that gave me great comfort. Despite this there was still so much we had to overcome.
The date was set for the end of August, which meant I had about six months to work with Iris on certain issues. As I broke down the trip in my mind it was a daunting task. Iris hadn’t been on any public transport yet: not a bus, train or plane. The holidays that we had tried to take in the past had ended with us returning home early. Our Cornwall trip when Iris was one and half years old had hardly been a success and nor was another attempt to enjoy ourselves in Wales the year after. That only lasted a couple of days before we had made our way back home. Iris was only just gaining confidence in public places and the thought of the massive Heathrow Airport in London and a plane packed full of people for two and half hours, strange noises, sensations and then arriving in a different country made me nervous. Then there was the wedding day itself, Iris would need to sit quietly through the ceremony, ride on a bus and a boat and handle a busy reception.
In all the celebrations and excitement I had been pushing away the reality of what was to come, what I would need to do to prepare Iris for this. I suddenly felt overwhelmed by the prospect and nervous about how I could possibly make it all work. Then I thought about how I had started the Little Explorers Activity Club because Iris found being around others so hard. That had changed over time. Could I really manage to do the same for this trip? Were we crazy to even think this was possible, let alone that we might have a great time?
Thula stretched as far as she could on her back legs to reach the door handle.
‘OK, I get it. You want to go out,’ I said.
As I walked over she greeted me with a chirping trill, and I opened the door and she bounded out into the snow. It was the end of January 2015, the first snow was still falling and Thula couldn’t wait to get out there. She was built for this kind of weather; her coat, sometimes silky and flat, was all puffed out with a regal mane of thick luxurious fur like a beautiful collar. Her rather oversized paws with their long tufts were perfect for making her way through the garden. When Iris had finished her breakfast she went to the window and saw Thula playing, pouncing down hard on something she had heard under the frozen layer. Her stripy black-and-white tail, bushy like a fox’s, made Iris laugh. Then she watched Thula as she lay calmly in the sun upon her frozen blanket. The foliage, hedges and branches were all covered in a white frosting that glowed in the golden morning light.
‘Shall we go out and play with Thula?’ I asked.
‘Snow, more snow,’ Iris said, and then did a little jig, which I took as a yes. By the time I had her all dressed in her snowsuit and boots the snow had stopped falling and although we had music therapy soon I knew this was our chance. I could already hear it starting to melt; if we didn’t go out now, it would be too late.
I was expecting Iris to react as she had done before, and be nervous of the crunching under foot. I thought she would probably need to be in my arms again, but this time she had her loyal friend at her side, so it was a different story. It took a while for Iris to acclimatize to her garden all in white: she just stood still, listening from the decking and watching everything with Thula beside her. She was intrigued by the sounds, and her fingers moved as if they were playing an instrument and she was connected to the water that melted from the branches. I could see she was calming, her breathing slowing down, her breath warm in the cold air as she studied the landscape in great detail. Thula made her move, bouncing through the snow and leaping up on to the tree stump. Iris walked over to join her and soon they were both happily exploring. I opened the gate and off they went down the hill into the orchard.
Something had caught Thula’s attention and then Iris’s too. I followed their gaze and saw a pair of muntjac making their way through the wood and up the track to the fields beyond. I loved that even in the winter our garden attracted so much wildlife. We were very relaxed gardeners; we certainly weren’t going for the neat, well-groomed look. Any fruit on the trees that didn’t get eaten was left for the animals. Our flower beds and hedges were left to grow wild for them to seed, providing many opportunities for the animals that lived around us. After the winter, just before the spring, we would clear everything and make way for the new growth, then the whole cycle would start again.
It was nearly time for Iris’s music therapy session. She turned as soon as I said ‘music’ and made her way back up to the house with Thula trotting along behind. By lunchtime most of the snow had melted. It had been a beautiful but brief encounter.
I heard Iris say in a sad voice, ‘No more snow!’
‘There’ll be more. We have the snowdrops coming soon too.’
It was the snow that calmed my worries about how Iris would manage abroad. How far she had come since the first time she had seen snow, how she had adapted. I owed it to her to trust in her resilience.
‘So, what’s the new plan?’ P-J asked me.
I started to wonder when our conversations weren’t going to be about problems and solutions … Sometimes I got so tired of it all, just wanting life to be ‘normal’, but I always came to the conclusion that this was our normal.
‘I thought we should work on the first part of the trip, so that means the airport. Iris hasn’t been to any big buildings yet with all the noises of people, trolleys, cafés, restaurants and shops. So my idea was to build up slowly, carry on as we were, taking her to places, pairing it up with things she likes but go bigger – much bigger.’
‘Like where?’
‘The theatre would be good. Maybe there’s an orchestra we can go to that’s held there.’
‘I’ve been there before. It’s very big in the entrance hall, loads of different floors, restaurants and bars, lots of people hanging around. It’ll be a massive step, though. I’m not sure if she’s ready for that.’
I agreed; she wasn’t quite there yet. We needed to spend the next month building up to that sort of outing.
‘How about some tourist places?’
‘Yes, anywhere where we can get her used to crowds and queues. Then there’s the issue of her not liking to eat in public places or use the bathroom. We need to figure all that out too and practise them.’
‘List! Where’s your list?’ P-J said, laughing at me as I ran through yet more issues.
Much to his amusement I rushed off to get a pen and paper. Then for the next few days I researched and made bookings for various performances, found places where we could take Iris: more trips and fun adventures to go on. There was also her schooling to think about, so I thought we could potentially get two items ticked off my list at once with an outing to a bookshop. It would be busier than most of the shops she had been going to, but filled with something she loved and it might even help me find another topic for her schooling. Hopefully she would be so happy at the sight of a whole room filled with books that she wouldn’t mind the crowds of people and children.
We made our way across the busy high street with Iris holding our hands. She was a little unnerved by a noisy lorry trundling through the town centre but we managed to get to the bookshop without a problem. It was as if we were taking her to a sweet shop: as soon as she was in, her eyes lit up and we made our way over to the brightly coloured children’s section. She picked out a book all about a princess and wouldn’t let go. She loved the colours and sparkly details, and where the glitter was stuck to the paper she felt the texture carefully with the tip of her index finger. She sat down at the table in the centre of the room and went through the book over and over again.
She didn’t seem to mind the other people or the noise: she was focused and nothing would take her eyes away from the princess. We bought the book and with it came a new topic for Iris’s education – castles.
I had a call from my brother the following week. He was involved in a project to make a series of films using the new Sony Action camera. They wanted to tell Iris’s story using one of these cameras and thought it would be a brilliant way to raise some more positive awareness for autism. We didn’t like the idea at first; we had always protected Iris from the outside world and the media. The thought of a film crew at our house was worrying, but the more James explained about the project the more I saw the potential benefits for others. It was another way I could express how different was brilliant, changing the perceptions about living with autism. More tragic stories were hitting the headlines about the problems with bullying and autism in schools, and I wanted people to understand the potential hidden within a child on the spectrum. For Iris the project would potentially be very challenging. It would be intensely social as a film crew made up of a cameraman, director, sound technician and her uncle would be with us for three or four days. It would be action-packed and demanding for all of us, as they wanted to capture the key elements of her story. I had no doubts that Thula would relish the experience, but for Iris it might be a step too far. For many nights I thought about it, and the pros and cons in my mind shifted all the time, but in light of our goal for the summer we decided to go for it.
We agreed that we would carefully monitor Iris and I made it clear to the director that if she needed to have some time out then we would all need to give that to her. Filming was due to start at the end of March. The team first came up to meet Iris and to see the locations. Then they sent the tiny video camera to us the week before so that Iris could get used to it and could have a go at using it herself to record life from her perspective. One of Iris’s favourite places to film seemed to be in the bath with Thula. The footage made me laugh so much: Thula’s thin legs under the water and then close-ups of her drinking or the depths of her soft coat and those long whiskers.
Waterfall Bounce, acrylic, April 2013
From start to finish I was astounded at Iris’s progress. She allowed me to put a harness round her body so we could fix the camera on to her. She would wait patiently in the car or on the bikes as the team worked to set things up. Following instructions wasn’t easy for her so we took a more go-with-the-flow approach and Thula made us all proud as she took baths, went on the bikes, played with bubbles and even had a swim in the swimming pool. The house was full of people and at lunchtime the kitchen was packed with equipment, laptops, screens, batteries charging, sound boom, cameras and lenses … It felt exciting but exhausting at the same time, but Iris was loving it. A whole week’s worth of activities were crammed into just one day and although tired at the end of each day she was very happy.
There were times when I needed help with Iris and James would step in. He carried her up to the house on his shoulders when she needed a break, or gave her a snack and she would reply with a ‘thank you’. He even swam with her in the pool using the underwater camera. He didn’t put any pressure on her, but equally he didn’t seem worried about just getting on with things. I loved watching Iris interact with him and the others at lunchtime as we all ate our food at the picnic table. She wanted to be included and to be with everyone, which was an incredible change as for so long social mealtimes had been such a challenge.
The project had started off as a way to help others but it turned into a fabulous way for Iris to practise her social skills with people who understood her. It gave me so much hope for the summer, inspiring us to keep going with our plan. There were downsides, but not in the way I had predicted; it was nothing to do with Iris and all to do with me. The process of creating a film and seeing the vision come to life from another’s perspective about our life was hard. I had previously captured Iris’s life through my own lens, and my romantic photography had a soft gentleness to it. The film ended up being more modern, attracting a younger crowd to go with the adventurous new action camera.
It was just over two minutes long, telling Iris’s story from a unique perspective. The inclusion of old footage from when Iris was a baby brought it all back. Iris playing with her toys and not even looking up if we came into the room or said her name. Standing in the garden as a toddler with her arms out, her fingers feeling the wind. Our child, so removed from us but connected to nature, was there before me on the screen. During the filming I recorded a voiceover; the director asked me to think about that time, to think of how I felt back then, how Iris had been with us and our relationships. Doing that unearthed all those feelings from the early years and then seeing it all together in a film made me feel vulnerable. The feelings were raw and it opened up that part of our lives once again. But we had moved on and Iris had overcome so much. It was upsetting but also empowering and helped give me the strength to move forward.
Preparations were underway for our ‘castle’ theme and in the spring we all worked on a new project together, building our very own castle in the garden room made out of pink cardboard. Thula and I were on turret duty while P-J and Iris worked on the walls together. Iris would say the odd word – ‘Princess, prince, king, queen …’ – as she held one side, while P-J bent it into the right shape. It took all morning but once it was finished our hard labour was rewarded. Thula prowled the internal corridors of the castle, then was on lookout, sitting majestically on one of the outer walls. Iris was in the inner courtyard inspecting her crown jewels and then playing with the knights, dragon and princess puppets. She had the grand idea of putting her trampoline in the centre and she bounced for hours within the walls of her castle. Over the next few days the castle was decorated with all sorts of stickers and paintings. The scene was set for an ambitious trip to Warwick Castle.
The back of the car was full, there were books propped up against Iris’s bike seat and the puppets were stored away in Thula’s basket. A whole range of knights, kings, queens and horse toys were scattered all over.
‘Are you sure you’ve got enough stuff?’ P-J said. Missing his sarcasm through my tiredness, I ran through the toys I had wanted Iris to have with her for the journey.
‘Oh, I forgot the archer toy. Let me just go –’
‘She’s fine, look.’
I looked into the back and Iris said, ‘Rag ’n’ roll!’
My car seemed to be a mobile classroom on trips like this, but the long journey had its benefits as we made sure Iris understood what we were about to see. I don’t think anything could have prepared her for what was to come. The beauty and splendour of Warwick Castle, with its river running through the blossom-filled valley, was exhilarating, at times overpowering, but above all a wonderful place for her to explore. My concerns about the queues for tickets were unfounded; our early arrival meant there was only one other couple in front of us. We made our way into the interior of the castle, Iris admiring the armour on display in the Great Hall and the knights on their horses and then she was off. She made her way confidently past other visitors, P-J and I following as she went from room to room, stopping at objects or paintings that caught her attention and then hurrying down corridors, upstairs, downstairs, along more corridors, settling at a window seat for just a moment before setting off again. As we walked behind her I could hear lots of words, one after the other. She saw a portrait with a pair of lions in the State Dining Room and I heard her say, ‘Lion. Lion says roar!’ Then when she spotted an eagle on a fireplace: ‘Eagle, wow!’ She described and labelled everything she saw. She pronounced the famous portrait of King Charles I on horseback by Van Dyck a ‘big knight, white horse’. She was a little confused by the lifesize waxwork models; she wanted to understand what they were all about, including their long dresses. I could see her thinking ‘Mummy doesn’t wear these’ as she bent down and had a look under their skirts. At that moments like that I would point out something in the next room and she
would hurry on so I could try to avoid being told off about her touching the fabrics.
Once Iris had explored the castle it was time for a walk on to the mound. She stopped in front of P-J and lifted her arms up: her signal to be carried.
‘OK, Beanie, up on my shoulders you go,’ he said, and she tucked her knees up as he lifted her, then as she got into position her hands flapped excitedly and we made our way up to the top.
But suddenly I could tell by her noises that something was bothering her. The hums were intensifying and she was getting frustrated. Maybe we'd done enough and it was time to go home.
My own legs began to ache. I was tired and the extra pressure to prepare Iris had taken its toll. I realized that I needed to pace myself as well as Iris. I had been so busy over that past week, with hardly a chance to stop and breathe. Even in the good times looking after a child on the spectrum comes with extra layers of thought, preparation, listening, watching, research and reading her non-verbal language to understand how she perceives the world. I needed to do this to help her avoid the meltdowns. Iris hadn’t experienced any for ages but we needed to observe her carefully and rein things in if needed.
Iris Grace Page 22