Koi, acrylic, May 2013
‘Is this the activity club?’
‘Yes,’ I said.
‘Good. Found it then.’ The very tall man with a beard waved down another three cars filled with more dancers.
The gates opened and shut, and opened and shut, until my heart started beating hard. There couldn’t be any more surely! I had completely forgotten to ask how many dancers would be coming over.
Iris, however, was intrigued by the layered colourful cotton on their clothes and her interest in them calmed my worries. With all the Explorers assembled, the music began and as I looked around at the happy smiling faces I realized that they were all looking at Iris. She was on the edge of the decking, copying the dancers’ movements, her eyes fixed on them and the violin. She was immersed in a world filled with music and dancing, her troubles with social interactions melted away. Iris’s enthusiasm was infectious. James sat down close to her and watched the different formations. Oliver and Iris both joined the team down in the garden and our new Explorer William was watching from the decking holding on to a dinosaur toy for comfort. I have had many moments while running the club when my heart filled with pride but I was almost in tears when I saw Iris surrounded by dancers having an amazing time.
In time William and his whole family became key to the club’s success, motivating us and a driving force when I needed help. William’s interests were firmly fixed on nature, animals and dinosaurs; he was a tiny encyclopaedia of natural history and entertained us all with his knowledge. I loved the idea of sharing the children’s interests between the group and we decided to explore William’s fascination with dinosaurs. I knew this would be more challenging for Iris and that I would need to prepare for this one, so William kindly offered to lend Iris a whole box full of dinosaur delights the week before the club.
Iris studied the dinosaur toys and books with great interest on a blanket beside her tree stump. I had learnt when introducing new things it was best to pair them up with something she loved and somewhere where she felt comfortable, and the stump fitted on both counts. Watching Iris play with these rather terrifying creatures with so much grace made me see them in a different light. It was like a surreal Jurassic ballet as she tiptoed around the garden with the pteranodon carefully positioned with its feet between her finger tips and the wings resting gently above her rounded ballerina hand. She danced and cradled the triceratops, feeling the bumpy texture of its skin, the smooth long horns and the frill round the head. Iris has this ability to see the fragile beauty in everything, teaching me to notice details I might have overlooked: something unexpected, the exquisite texture or its interesting shape and form. I was delighted to see that the dinosaurs had captured her attention so beautifully and was excited about the arrival of the Travelling Natural History Museum, a company that provides exhibition workshops for children with fossils and all sorts of replicas.
The garden room went dark as the massive lorry parked up outside. It was early on Saturday morning and we were going to turn our home into a miniature museum complete with large model dinosaurs, bones, teeth and all sorts of other curiosities. Work was also going on in the kitchen to prepare for the plaster session where they would make their own fossils. The set-up was slow and as more boxes were brought in one at a time I began to have those familiar anxieties: what if we weren’t ready on time? Even P-J was getting twitchy as he made the dinosaur expert some tea in the hope it would spur him on. Iris climbed on top of the triceratops and giggled, which did wonders for my nerves. Everybody joined in, including Thula, for the meteor display outside on the decking. She took centre stage as the sabre-toothed tiger before the meteor plummeted into the bowl of flour, an explosion of white dust that made the children laugh hysterically.
After everybody had left Iris said goodbye to the dinosaurs in the lorry, still grasping her very own fossil. I carried her back inside, shutting the garden-room door behind us. She settled in the comfy armchair with her new dinosaur book and started to read out some of the words.
‘Gigantosaurus!’ she said in a loud voice. ‘Stomp, stomp, stomp!’
It was an idyllic set-up for a while but things needed to change. We wanted to push the boundaries with the club too and start a new programme that would help the children even more, so we introduced a family of non-autistic children to the club who were friends with one of the families who had been before. My hope was that they would guide our children in times where they felt a little lost, encouraging them to socialize and be more involved with the activities. The new children were very sensitive around Iris and gave her space when she needed it but kept trying to include her and I was grateful for that. Later this developed into a buddy system of having non-autistic children enjoy the activities with the children on the spectrum. It was a move that made some of the parents uncomfortable. They felt it took away the support-group feel of the club but we believed it was the right decision. I started to realize how difficult it is to do your best for all involved, keeping everyone’s best interests at heart given how challenging autism can be in the hard times. But this was the starting point of many adventures for our children and I am so proud of what we achieved.
As Iris’s confidence grew we saw changes in her abilities to be able to go out. So during the week we started to take her to quiet places like garden centres where she could get used to being around more people in unfamiliar surroundings. At first our trips were short – only half an hour – but as each week went by we lengthened them to the point where we were going out for half a day. To make it possible we didn’t push things too far: we prepared her for what we were going to see, she always had a good meal before leaving and ate as soon as we returned home. I didn’t ask her to sit in cafés or expect her to eat while we were out as I knew she found that difficult – she still needed peace to be able to eat. There would always be something that she loved to keep her interested and many of our trips featured animals, water and nature. She gradually got used to the movement and presence of others around her in these public places and I started to see her interact more not only with the new environments but with people too. It didn’t always work, though. Sometimes we would see how she used to be: nervous and disturbed by the busyness that seemed to cave in on her. Very often those times happened when she was tired and we would take a step back and let her just be for a few days, and give her some more time in the garden or on bike rides. It was a constant balancing act between pushing the boundaries and letting her rest.
Aquilo, acrylic, September 2013
In the winter we went to another zoo after the success of Iris’s first visit but this time it wasn’t car-based, so it was more challenging for her. She had to walk through crowds, stand in line, being close to others and passing groups of school children. She was fascinated by the elephants, spending a while observing them in their warm barn while they ate their hay. She loved the penguins and some of the other birds and said ‘meow’ to the meerkat. I was so proud of her and it was liberating for all of us to be able to go out as a family on trips like this. But you could never quite tell what was going to happen. The unpredictable nature of being in these public places meant that it didn’t matter how much I planned ahead, an already challenging situation could easily turn into the impossible. I hadn’t thought of it but winter is when parks and zoos do maintenance, so there was noise from builders and groundsmen making various repairs and upgrading parts of the zoo. That, coupled with the cold wind and showers, didn’t exactly make it easy for her but Iris managed very well and enjoyed herself. Seeing her at times like that was incredible; she had come so far since starting the club. It had provided her with the confidence and experience she needed to be able to negotiate unfamiliar surroundings, noises, people and changing circumstances. At the end she was even confident enough to have a walk around the shop and pick out a present to take home. While it was tempting to stay warm at home, I was very pleased we made the effort to go out and the trip gave us our new topic: elephants.
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br /> Beethoven’s Fifth echoed around the swimming pool and in between Iris’s joyful ‘da-da-da dums’ we heard her say ‘jellyfish, jellyfish’. She repeated the words over and over with hysterical giggles, apparently happy as a jellyfish in water. With her swimsuit and armbands on without a problem we were already on a high; after all, it wasn’t so long ago that just getting a top on Iris had been a gold-medal-winning performance. The iPad apps and videos had done the trick, and she now understood the purpose of the armbands and welcomed them. We had paired swimming with Beethoven’s famous symphony and it was working wonderfully; the energetic power from the music gave Iris so much confidence. Reaching out to P-J she held on to him and then ventured out on her own, propelling herself forward with little wriggles and frog-like movements with her legs.
We had known since Iris was a baby that music would always play an important role in her life, and lately orchestras and in particular the violin held Iris’s attention above any other instrument. The meaning of it to Iris was still unclear to us. Her passion for violins was huge. They spoke to her. Sometimes when I looked around at home every surface would be covered in books all open on a page with a violin. I had been buying books one after the other and she loved them all. My First Orchestra, The Story of the Orchestra, Instruments of the Orchestra, Little Children’s Music Book and My First Classical Music Book, they all surrounded her and she looked upon them like jewels glinting in the sunlight. The iPad would also be on with the Philharmonia Orchestra app running with a musician describing the main techniques of how to play the violin. The more I encouraged her interest in music, the more it developed.
Magic Flute, acrylic, July 2013
One of the intriguing yet sometimes problematic behaviours of a child with autism is their ability to immerse themselves in a subject. It isn’t always the case but very often their concentration levels and self-motivation can be outstanding for a topic that interests them. Sometimes they get interested to the point of obsession, but this does allow them to excel in certain areas, like with Iris’s painting, and now I was seeing it with her interest in music. She was reading words from her music books and had already taught herself the names of all the instruments and what they sounded like so she could recognize each one. I believed that as long as she wasn’t getting stuck and her behaviour was not too repetitive, where there was a continual flow of learning, then we should follow these interests and allow her to explore and learn at her own pace.
I spoke to a violin restorer who happened to have a violin that would fit Iris. I talked about her and he didn’t brush off what I was saying about her intense interest in music at such a young age. He was intrigued to hear about her paintings and I felt like he understood what I wanted to do for her. I listened carefully as he told me that I should just let her enjoy the violin, to play with it, to have it around her as much as she wanted. Maybe try a few lessons, but if that didn’t work, not to worry – it could just be too early. We agreed that I would drive over to his workshop in Stamford to see the violin and have another chat about how to proceed with Iris. It was a beautiful drive that I knew well from many weddings that I had photographed in the area but I did feel very tired. Iris had been up in the night and not even Thula had been able to settle her. She had been up at 2 a.m. and nothing would persuade her that it wasn’t morning time. She had wanted to look at her books downstairs in the playroom and so I rested on the sofa while the pile of books on the floor grew. One after another she would go and collect one from the shelf, carefully going through it and then adding it to the pile. Rather like a quality-control stocktake, some were discarded and the loved ones were kept neatly beside her.
About halfway through the journey I passed under the Welland Viaduct. This staggering structure had always given me courage when I felt nervous before I got to a wedding I was photographing. As I drove under one out of the eighty-two arches I was in awe of it. When I felt tired and like I couldn’t give any more I would sometimes think about places like this; they are true wonders of strength. The viaduct that I was driving under was constructed with over 30,000,000 bricks, all manufactured on site. It was completed at a pace that even I couldn’t feel impatient with: the first brick being laid in March 1876, and all eighty-two arches completed two years later. Considering the basic tools used it was an inspiring achievement and there was no way I could feel tired after just one bad night’s sleep thinking of that. I turned the radio on to Classic FM to get me in the mood but as I listened to the radio presenter talk I suddenly realized I had not got a clue what I was doing. I knew nothing about violins and nothing about music for that matter. I think Iris could actually say more about the instruments than I could. I was completely out of my depth. Did that matter? Thinking of all those places I had been, the adventures abroad with P-J, teaching myself about photography, I knew it didn’t. Autism has a way of making you forget what came beforehand. It can be all-consuming. It pushed us to our limits time and again in so many different ways and sometimes you seemed to not only lose your child but yourself as well.
The restorer’s workshop was small, like a galley kitchen, but instead of pots and pans on shelves and cupboards there were violins hanging everywhere and the surfaces were a carpenter’s workstation. He stored his on the wall, so they were on display to see. I loved that idea. If you love something so much, why shut it away in a case every day? He went through the violins on display. Some were antiques and highly valuable, others were new intricate original designs. We stood side by side as there wasn’t much room to move and I listened to him talk about all the beautiful instruments. It was like the Aladdin’s cave of the music world and I felt excited to just have stepped through that door.
‘Here she is.’ He opened a tiny red violin case and delicately removed the violin, made a few adjustments and then played a tune. ‘Sorry that’s not the greatest. It’s really difficult for me to play these smaller violins, but this one has a beautiful sound and I think it will do very nicely.’
It sounded heavenly to me and I went home with the little violin on the passenger seat beside me. He had told me not to say ‘Iris can’t play the violin’ but instead ‘Iris can’t play the violin yet.’ He was an incredibly positive open-minded character and the small word at the end changed the sentence dramatically, giving hope for the future. I reminded myself to add more ‘yets’ to my thoughts from then on. Each time I ventured into something new with Iris we were meeting people along the way, who were all playing their part in our lives. The loneliness had gone.
Iris’s body was snuggled up against mine on the sofa: finally she was asleep. As she had drifted off her hand was still gripping her new violin, seemingly not wanting to ever let go. It had been a long day. A song called ‘A Precious Place’ by Patsy Reid played on a CD, a beautiful Scottish fiddle player who had cast a spell over Iris. She was mesmerized by her playing and wanted to hear her music again and again. Earlier on as the sun was going down she had taken her new friend to visit all her magical spots in the garden: the tree stump, the bench and down the path into the orchard banked with grasses. Rabbits scattered into the hedgerow and Iris stopped halfway down the path just before the old damson tree where the woodpeckers feed. She held the instrument high up in the air, looking at it in a beam of light and then bringing it down next to her cheek, and rested for a moment. She loved it with all of her heart.
Iris loved to play with a pop-up paper orchestra on the tree stump and we would say it was the ‘Tree Stump Philharmonic’, which she found hilarious. She pointed at each player, naming their instrument and then looked at Thula to make sure she was paying attention to her music lesson. I had been trying to find a suitable orchestra to take Iris to see for months, so I was delighted when I saw a listing for a local orchestra performing at the weekend. It was the perfect kind of concert: casual enough that nobody minded the fact we had a child in a cape walking with us and there were lots of violins. It started with Tchaikovsky’s Swan Lake. I shall never forget the look on Iris’s fa
ce during the applause at the end: pure happiness and joy, with her arms up in the air saying, ‘Wow! Yeeeeeee!’ In the quieter parts she wanted her orchestra book on her lap and went through the instruments one by one and then looked for them among the performing musicians. Her first experience of a live orchestra had been exhilarating and it spurred on a search for many more concerts to take her to.
There was something so powerful about live music that had an effect upon Iris. She would become more open socially and she would use her voice more, and seeing her in that state became a beautiful addiction. ‘Where can we take her next?’ P-J would say after a performance and I would do some more research. We took her to a wide variety of different concerts and music festivals. The ones in the open air were some of the most successful and I will never forget how free and happy she was listening to a local jazz band in the gardens of Kelmarsh Hall. When the heavens opened and it poured with rain the band and some of the crowd huddled under a small tent, and to my surprise instead of being upset by being so closely surrounded by others she was excited. The instruments and their players were all there so Iris felt confident. While they played it was as if she was transported into the music, connected; her fingers, mind and soul were with it almost as if she could see it. She was experiencing those musical sensations in a different way to how we felt them and afterwards those connections were open to us too as she talked to us, looking straight into our eyes and giving us a big hug.
Iris Grace Page 20