The following Friday night wasn’t following the normal bedtime routine but I didn’t care; she was enjoying life and making great strides. I sang a song called ‘Mellow Yellow’ with a made-up story about Iris’s painting that lay before us on the table. She laughed at me while she danced around her painting, adding more yellow with a wide brush.
‘I’m going to record all your songs one day you know!’ P-J called out from the garden room, teasing me.
‘Don’t you dare,’ I said. I had made up little ditties for all sorts of activities and parts of Iris’s daily routine: there was one for brushing teeth, another for using the bathroom and one for when we were leaving the park or saying goodbye to the bikes, iPad, music, books … Well, pretty much any situation. These improvised little songs helped Iris, guided her and encouraged interactions.
That evening Iris was in a great mood, and late into the night, after her bath, I had a very receptive little girl: happy to engage, talking and creating a beautiful painting. I knew that maybe I wasn’t doing her or myself any favours by not keeping to a routine but for the first time Iris managed to say a clear ‘painting’ and ‘paint’ along with all sorts of other words she had used before. My excitement about this set her off running around the kitchen and to the hallway with her hands in the air as if she had scored a goal. Sometimes Iris could say words but the pronunciation was a little off, so only I would be able to tell what she was saying, but hearing her that night it was brilliantly clear. She returned and added some more paint to the paper and then rushed off again with the brush, over the carpeted floor, which made my heart leap, and then on to the sofa where Thula was. She lay on the sheet that I used to protect the furniture and dotted spots of the paint just in front of her paws. Iris wanted her to be included in the activity too and enjoy the colours as she had. We laughed as Thula tried to catch the colour by putting her furry paws over the spots of paint. Soon after the games with Thula Iris went upstairs, climbed into bed and fell fast asleep within minutes, and so I named the piece Painting a Lullaby.
Painting a Lullaby, acrylic, Summer 2014
I would wake up in the mornings with Iris dancing around the house saying, ‘Tuba, trombone, French horn, drum, oboe, bassoon, harp, violin …’ Iris and Thula would then sit together on the sofa and Iris practised playing the violin, sometimes in the correct position, other times with the violin resting on her lap as she gently drew the bow across the strings. One morning as I tidied up the kitchen Iris started bringing in things from all over the house. First it was a CD she wanted on – The Carnival of the Animals, one of her favourites. Then she rushed off to get some music books, a chair and a great number of musical instruments. She carefully positioned the books round the edge of one of her paintings so they were standing upright and the instruments were at the end of the table. I had started to notice something; to her the arts were not separated into the neat categories that adults put them in – they were one. The music imitated a bird in the sky and Iris turned to a page with the flute and tried blowing against her fingers. I whistled and she giggled. Her attention was then on the painting itself; there was one area still not dry from the evening before and she scratched into the surface with a sculpting tool, moving in time to the music. A quick go on the xylophone and she was back to looking at the books and stirring some pale green paint while listening to more animals from Camille Saint-Saëns.
On another occasion Iris had a fantastic time at a concert that was especially for children in our local town. She heard the oboe playing Ravel and Dring. It started well. Iris was confident as we walked hand in hand from the car across a busy high street to the building. At first we sat with her on my lap listening to the music. She smiled at the musicians and then ventured further. When the oboe player asked if anyone had their dancing shoes on, she bounced up and down right in front of her with her pink shoes on and after the music had stopped she had a wonderful time dancing around the rest of the hall. Even when the other children were given their own drums and shakers, she coped by climbing on me and standing on my legs to get up high. She felt safer being able to see everyone from above and climbed back down when she could manage to join in; it was almost cat-like behaviour. When we arrived back home, paint flew all over a brand-new sheet of paper. Thula was, of course, relieved to have her girl back again and spent a long time inspecting this new painting; she was intrigued as the colour mixed on the paper: trails of green across red and a pale blue creating roots through the darker purple below.
Since Iris’s confidence was at an all-time high and she seemed so much more receptive to social situations when paired with music, we felt the time was right for her first violin lesson. It didn’t quite go as I had imagined. Ten minutes in, with wild eyes, ears back and tufty bits flying, Thula was swinging skilfully from the curtains way up high and then landing on the floor, running at speed in a cartoon-like motion. She leapt from the sofa, knocked over a lamp and ran across the room and out to the kitchen where Iris was sitting. Then she was up high again with legs dangling off the blind just above Iris’s head, a mad look in her eyes, her mood feeding off Iris’s anxiety. Cries could be heard from where we were sitting in the garden room. I walked over and grabbed Thula to put her away in the laundry, trying to regain some sort of calm in the mayhem.
It had all started so well: Thula was as she normally is, interested in the arrival of the violin teacher and settling in a magnificent pose on top of the piano ready to hear some music. Iris had been upset that morning but everything was fine when the teacher arrived. But her reaction to the intro lesson wasn’t what I had expected. As soon as she heard the teacher’s violin play she cried and ran out of the room and wouldn’t return. It was a shock to me as the music was so beautiful and familiar to Iris, but her reaction was immediate. She didn’t stay and inspect the new larger violin in the way I had envisaged. She was terribly upset and I couldn’t figure out why. She did, however, stay in the kitchen for a while and enjoyed some of the music.
I was thankful that we had found such an understanding, lovely teacher. She was a recommendation from the violin restorer and had travelled a long way to come and see us. I’m sure most would have thought I had gone completely mad and that Iris obviously didn’t like the instrument. Iris’s communication skills had improved quite dramatically but not to the extent of being able to tell me why she reacted in this way. I couldn’t help but feel sad; the violin had always brought her so much happiness. The absence of her usual music therapist, who had been on holiday, might have been the reason – perhaps she had been expecting her to be in the room and the change was a shock to the system. I will probably never know for sure, but we did try again and the next time I started to learn some basics on the violin in the hope that Iris would want to join us.
It wasn’t to be. In the weeks afterwards Iris made it clear she didn’t want me to play either by removing it from my hand, putting it down carefully and not letting anyone touch it. I did manage to have some lessons on the piano, though, so I could start to play for Iris myself. I realized then that maybe it was all too early for lessons, and like my attempts years earlier to introduce Iris to animals the timing wasn’t right. The social aspects of a music lesson are intense and although Iris had come a long way she wasn’t ready for that yet.
There was an arts centre in Leicester called Embrace Arts, now the Attenborough Arts Centre, that truly lived up to its name, making everyone welcome. Championed by Lord Attenborough, it is one of only two purpose-built spaces in the East Midlands for the promotion of arts and disability. With the deep resonant sound of the double bass playing, Iris relaxed as we made our way through the busy café area to the music hall, where we picked out a table on the front row facing the grand piano. I had selected a range of small toys for her to play with and I passed them to her one by one. Iris looked over to the musicians with great interest as they warmed up. I was amazed at how calm she was, with me for a while on my lap and then happy to be on her own chair as she watched and
listened to the skilful players. It was a jazz trio made up of the saxophone, the double bass and the piano. Not once throughout the whole performance did Iris look unnerved by the volume or the complexity of the tunes. Then when the audience clapped, instead of being alarmed, she turned to see everyone’s faces, smiling at them. I could hear her humming along to the music and occasionally doing that ‘dooo-da-dadoo-da-dadoo’ that people do when they are listening to jazz. It wasn’t the case with all music; she didn’t like children’s tunes or many modern bands, but she loved classical, jazz and some music from around the world like African and folk songs. They all had a different effect upon her: invigorating, calming, relaxing, fun.
Dance to the Oboe, acrylic, Summer 2014
A few months later we returned for another concert. She listened to a small choir, a cello and a piano played by the Leicester University Musicians. The violinist, who must have been playing before we arrived, came to sit down in front of where we were. Iris couldn’t take her eyes off the instrument, saying in her quiet voice, ‘V, violin’. When it was packed away in its case I whispered to her that it would come out to play another day and I started to feel rather hot, worrying about an impending outburst of emotion, but she just smiled at me. She looked over instead to the student playing the piano so beautifully and she was content.
This time we had some seats at the back and she had more space to play with her toys while she listened. These ‘Soundbites’, as they were called, suited us perfectly. You were allowed to go in and out, move around if you needed to and eat your lunch from the café. It was all very relaxed and filled with acceptance and a love for music. It allowed us to help Iris practise her skills in areas that she found so hard, like the busyness of restaurants, unexpected social interactions and the movement of other people. She walked confidently holding our hands through the arts centre and out of the front doors with a big smile on her face, the blue cape dancing along with her.
But there was a problem that I had to face and that was people’s reactions to us taking Iris out to these musical events. It was a harsh reminder of my challenges ahead. Judgements, other people’s opinions and thoughts would be catapulted at me whether I liked it or not. Up until that point I had been protected from this as we had mostly been based at home or with family. One time, away from the protection of home, the countryside and our bikes, we sat in a pew within a church – surely a place free from judgemental outbursts and a place we should feel safe. We were attending an afternoon concert, a Beethoven string quartet, and even though Iris was tired, she really enjoyed herself and occasionally hummed along to the music while playing with a few toys on the bench. She then climbed on to my knee and sat happily swaying to the violin while watching the movement carefully. The music was lovely and although I was enjoying it too, I dreaded every pause, every silence, due to the negativity I could feel behind me. I was willing Iris to keep as quiet as possible, but the music seemed to be making Iris very responsive and she whispered the names of her toys and even tried to replicate the violin’s tune quietly after they had finished.
A couple in the audience were appalled at our presence, and felt the need to tell us so at the end of the concert. ‘It’s not appropriate for you to bring your child here. You have ruined it for us, for everyone else and insulted the musicians.’
‘I’m sorry but my child has just as much right to be here as you. She’s been very good. You could have moved somewhere else if she was bothering you,’ said P-J.
I wished we had just hurried out. Why did P-J always have to say something back?
‘You have ruined it for everyone,’ the man repeated, furious with us.
Hearing those words nearly made me cry. Fighting the urge to burst into tears I held it in and walked as fast as I could with Iris back to the car. I wanted to get home, to shut our gates on everyone and be in the garden. I realized how fragile my confidence was after many years of being isolated at home. We had been going out much more with Iris that year and I had been feeling free and happy, but I hadn’t experienced judgement from others until then. Then I wished I had stood up to that couple and told them why we were there and backed up P-J. How could they be so quick to judge? It made me furious but I had said nothing and then disappeared as if I was in the wrong.
Of course they didn’t know Iris’s story. They didn’t know how hard it had been, what courage it took to bring a child with special needs to a concert. If they had known that Iris had watched the BBC Young Musician of the Year strings final over and over again, listened to countless recordings of violin players from around the world, seen YouTube videos of orchestras and read dozens of orchestra books and knew that music opened doors into her world, maybe they wouldn’t have thought badly of us at all. If only they had known that these musicians who played so beautifully were like my heroes; they were giving Iris something I couldn’t and in turn I was eternally grateful. It hurt deeply to think that they were insulted by our presence.
That day my confidence was knocked. I had to be brave and I wished people would be more understanding. Later that afternoon I emailed the musicians to apologize about any disturbance we had caused. What came next restored all that had been lost. They sent a message straight back saying how lovely it had been to see a child so connected to the music and enjoying herself, and that in no way at all were they offended. They then invited us to their rehearsals so that we could enjoy the music without feeling any pressure from others.
Later that month we accepted the musicians’ very kind invitation. To have only Iris and the musicians with no audience to worry about, just the classical music, was a magical thought. As we entered the church, the last few people from a family service were leaving: there was lots of loud chatter and noise and Iris began to cry. We managed to find a quiet space upstairs, and immediately she was fine as we waited for the musicians to move into the church. At first we watched from the gallery. She was so excited she couldn’t contain it. I could see she knew that she didn’t have to with the whole place to herself. She bounced, danced, explored and found a brilliant viewing spot above where the musicians were playing. Then we made the move downstairs to be closer to the instruments. Here, Iris was very different to how she had been before. She didn’t want to sit listening quietly, she wanted to dance to the saxophone, the cello and the violins. In the break she even turned the pages of one of the musician’s music sheets, getting so close to all of them. She was interested in the electric piano and one of the violinists kindly offered to get it working for her. She played on it while we chatted to them about their performance. They were all intrigued by Iris, her interest in music and told me about how they all first started. It was wonderful listening to them. Music was never in my world as it was for them and they could see quite clearly how much it meant to Iris too. It was as if Iris was forging ahead beyond our knowledge and passions; it was inspiring and I admired her so much for that.
Music was not only helping with Iris’s confidence and communication skills, it was also used in her education. I created a violin theme for her homeschooling and like all the other topics it all started with a motivator at its core, in this case the violin. The story of Peter and the Wolf by Sergei Prokofiev, a musical fairy tale in which each character is played by a different instrument of the orchestra, proved to be very effective, encouraging interaction, play, speech and reading. Peter is played by the violins and all the strings in the orchestra, the bird by the flute, the duck by the oboe, the cats by the clarinet, the grandfather by the bassoon, the wolf by the French horn and the hunters and their gunshots by the kettledrums and the big bass drum. Iris’s reading had come on so well she was able to read many of the sentences out loud and it was a perfect starting point to launch from. As with ‘The Owl and the Pussycat’, I created many projects from one story. We then moved on to Vivaldi’s Four Seasons, allowing me to focus on the weather and English seasons. We all went on adventures down to the stream. Thula would sit patiently beside Iris as she watched the water p
ass under the bridge. I would talk to them about the sounds we heard, and we played a game matching the different sounds and shapes in nature with instruments just like in Peter and the Wolf. A large tree in the wood became the double bass and the trickling water was the piccolo. I had bought Iris her own camera as she had been showing an interest in mine and she captured life from her point of view. She took an array of images, mostly close-up details of moss and water; she loved the soft velvety texture and those tiny shoots that tickled her fingertips. So at the end of the day when I loaded the photographs on to my computer I learnt a lot about moss in all its glory through Iris’s eyes.
At the end of November I had a very exciting call from my brother who was away with his girlfriend Carolina.
‘So tell me about Ireland. Where are you staying? What’s it like?’
‘It’s great. It’s been amazing. Listen, I have some news …’
‘Tell me.’
‘I’ve just proposed and Carolina said yes.’
‘Oh, James, that’s such wonderful news! Congratulations! We’re thrilled for you. The whole family will be over the moon.’
I couldn’t wait to see him over Christmas and celebrate. Since meeting Carolina something had changed about him; he was more relaxed and so happy.
We celebrated at my parents’ party at Christmas, and in London that January with a beautiful engagement party at the Garden Museum. The ancient abandoned church had been rescued from demolition in the seventies and turned into a museum. Now it also serves as a gallery space and a magnificent venue for events. My mother’s beautiful flowers and the dramatic lighting of the arches and windows created an air of excitement about their wedding. The plans were already coming together: a Swedish celebration in Stockholm where Carolina’s parents lived. I couldn’t help but get carried away hearing from the bridesmaids about all there was to see in their incredible country in the north. The city sounded like a dream: magnificent architecture, parks, palaces, medieval cobbled streets – all surrounded by water.
Iris Grace Page 21
