Back at the car P-J kissed Iris. ‘That was amazing, Beanie, well done!’ He turned to look at me; he was so happy, and even though I was tired his enthusiasm spread to me.
A few weeks later we had our next trip upon us, one that made me more nervous than the others – the orchestra at the Northampton Theatre. I wished I could take on more of P-J’s character in those times, his confident facade would come in handy in facing situations like that. It was the reaction from the audience to us bringing Iris that worried me. I tried my best to put that out of my mind and to stay positive. Iris walked confidently into the massive atrium, holding our hands, up the staircases, passing by the bars and cafés. The chatter echoed around her and yet she didn’t mind. She was focused; she was going to see the orchestra and in her mind that was all that mattered.
Every silence in the performance still made me sweat and as she said ‘bye-bye’ to the opera singer my fears were mounting. Iris was becoming very vocal. She was connected to the powerful music and it was clear for everyone to see. I had to hold on to her sitting on my lap. Iris and the music were one, soaring high. In her heart she was on the kettledrums as they boomed, floating above the flutes and dancing along the xylophone. She whizzed along the coiled brass of the French horn and flew out of the flared bell. She sang with the violins and hummed to the double basses. She adored every instrument and the musicians that played them, even the humble triangle was a delight to her senses. We left feeling elated, knowing that Iris could manage a large building like that if there was something that held her interest. In my mind I was making a plan, how to make the airport a place that Iris would connect with. I would find some apps for the iPad, games, books and toys on the airport theme and when we were finally there a visit to a bookshop would be a good start.
Trumpet, acrylic, September 2015
The actual journey to Stockholm was the main hurdle in our minds but other parts of the trip needed some preparation too. My brother had told me that after the ceremony we were all going to take a boat trip around the archipelago and so boats were also in focus. We decided that over the next month we would hire a boat and take it along the canal. Then both of us forgot about the idea until one day I opened up the garage to find that P-J’s bike tyre was completely flat. The weather was beautiful and it seemed a shame not to go out, so a spontaneous trip along the canal came together and within the hour we were making our way to the wharf with Thula in tow. She had jumped into the car and waited patiently, making it quite clear there was no way she was going to miss out on another outing. There was a kind of childish thrill about stowing away our extra cargo and Iris was very excited to be bringing Thula. To keep her safe on the transfer from car to boat I coaxed her into a cat carrier that also doubled up as rucksack, perfect for such an occasion.
Our boat for the day wasn’t a long canal boat but a shorter eight-and-a-half-metre one, still engine-powered but with the added bonus of a superb viewing area with benches and a table. The sides were open, making it light and airy. I settled Iris at the table with her books and a duvet and then let Thula out. She immediately jumped up on to the bench and curled up beside Iris on a cushion. The roles were reversed: instead of Thula comforting Iris it was Iris taking care of her nervous cat. Iris started to recognize where we were as we followed the tracks we had so often travelled along by bike. Within a few minutes they were both happy and we went on our way along the canal lined with trees, the fields beyond. The pace was slow; like anything related to the canal, a boat trip has its own time. You can’t rush anywhere and that was good for me; I needed to slow down for a while. We passed ducks and their ducklings, swans, moorhens, and saw the brilliant turquoise blue of kingfishers swooping low over the water and then back into the reeds; and Iris chatted about what she could see. P-J was at the back of the boat steering, so we all joined him and Iris had a go.
Thula sat in the seat by the controls and then put her feet up on to the top of the boat and stood on her back legs, which brought many smiles from passers-by. I had started to become used to how she took things in her stride and always wanted to be involved: biker cat, nanny cat, bathtime cat, artist’s assistant, educational assistant and now a boating cat. It was like she was one of us going off on all these adventures. We weren’t just bringing our pet along for the ride; Thula was really enjoying these outings too. Whenever we got back home after a trip with her she would be so much more affectionate to all of us, the bonds had been strengthened by being somewhere new and experiencing something different together, and in parallel Iris behaved in the same way.
After lunch at Foxton Locks we turned the boat to make the journey back home. But about a mile from the wharf there was a terrible clunk and the engine stopped. We drifted to the far side of the canal and into thick bushes. P-J tried the engine again.
Beep, beep, beep … The intolerably loud beeping pierced Iris’s mind. She couldn’t bear it and leapt on to my lap, starting to pull at my clothes.
‘Stop, P-J! Stop!’
He stopped trying to get the boat started and came over to me.
It was the noise, she couldn’t stand it. ‘Can you ring the boat company? Maybe they will know what to do?’
P-J went back to the controls and eventually got through to the manager who gave him some instructions. But when he turned over the engine and the beeping started all over again it was clear that Iris couldn’t handle it. She grabbed at my face, taking my lips and squishing them shut very hard. It was the only way she could think of to say ‘be quiet’ but it hurt terribly and her pain was now mine. I hugged her close for a long while as she cried, gently rocking from side to side, not saying a word until she calmed down. Iris was normally so gentle, the sweetest-natured girl, but I was seeing our child under pressures that I could only imagine. That sound was obviously painful and she would do anything she could to stop it.
All four of us sat on the bench together and mulled over our situation. The bank on the other side was where we needed to get to and the track back to the car. But how to get there? We searched the boat. There was no pole to push us over, no rope long enough to throw to a passer-by. One of us could have got in the water to swim over and then pulled the boat across. But the walk home would have been horrible, soaking wet in dirty canal water – and I didn’t even want to think about what lay at the bottom.
Luckily two policemen happened to walk by and offered to help. P-J found some rope from the buoys that hung down at the side of the boat to protect it. He tied them all together and after several attempts the rope was finally in the hands of the policemen on the other side and they pulled us over to the bank.
After securing the boat there was a rather embarrassing moment of offloading all my kit: food, drinks, toys, bags of books, duvet, my camera and Thula. We were like a pair of packhorses walking along hand in hand with Iris, Thula looking out at the view from the rucksack on my back. Before we left I had told Iris she needed to be brave for me, that this was all part of the adventure and that we had to walk to get back to the car. She was a little unsure at first but looked at Thula on my back and there seemed to be a moment of ‘Well, if you’re going.’ And so we abandoned the boat and started the long walk home.
Our misfortune with the boat turned out to have an upside. We had not only practised going on a boat but also regaining our composure when things were not going to plan, coming back from the edge of a meltdown. Best of all, Iris had managed to deal with the change of circumstances and change of plan, all things that had been so challenging for her in the past and all potential components of our trip abroad.
On the transport theme there was another aspect of our journey that was worrying me. We might be taking a train from the airport to the centre of Stockholm. A trip was forming in my mind, an adventure to the capital: a train ride to London and then staying the night at a friend’s flat. We could tackle a few issues in this one trip if all went well and maybe even go to a museum. I had fond memories of the Natural History Museum and since the dinos
aurs had gone down so well at the club I felt sure that Iris would enjoy it. It was strange planning a trip like this. If someone had suggested taking Iris to London a year earlier I would have laughed – we all would. The concept of Iris out and about in a city was inconceivable. But so much had changed. This would be another trip away from Thula but we needed to practise that too. Thula would stay at home while we were in Sweden and we needed to know Iris could manage without her before we left.
We were early. I, of course, was always prepared and Iris was following in my footsteps. She wanted to leave the house too soon but with so much eagerness to get to the train and her saying ‘Train, rag ’n’ roll’, I could hardly say no. So we sat in the car park until it was time to go on to the platform. I was like a walking library, my overnight bag was stuffed full of books and my shoulder bag was so bursting at the seams I started to tilt to one side from the weight. Iris was excited and very happy. I protected her ears as our train pulled into the station. Iris’s elation from the experience came with new abilities: she was talking more and using expressions we had never heard. When we went through a tunnel she said ‘Into the dark’ and started laughing hysterically, which set us off too.
She was particularly interested in one book I had brought along for the ride: a book called The Water Hole by Graeme Base, an extraordinary combination of wildlife, counting, narration and puzzles. There were animals hidden within the pictures, camouflaged cleverly. Amusement, education and delight was found on those beautifully illustrated pages. For the full hour, in between looking at the view, Iris wanted to hear the names of every detail she saw in that book. She practised her words and phrases, reading the sentences along with us and I couldn’t believe that with so much going on in the train we were also having a very productive lesson. The new stimulus and environment seemed to be spurring her on. The book was the anchor and with us at her side she was as confident as I had ever seen her.
St Pancras station made her gasp in delight; the massive volume of space with its awe-inspiring Victorian Gothic architecture was a wondrous sight and Iris held my hand as we walked to the taxi. Feeling her hand in mine as we walked through the busy station was incredible. She walked quickly beside me looking up and around with an enchanted look in her eyes. It turned out that taxis were her new favourite thing: better viewing than from a car and more space. She sat bolt upright with her legs crossed like a little Buddha. The owners of the flat were away so we had the place to ourselves and there was a piano there that Iris immediately started to play; I had forgotten about the piano and it was very much appreciated as it gave Iris something familiar. She settled in well, even managing to use the bathroom – another item ticked off my list.
That night P-J went out to find some food for our supper. There was a restaurant just over the road and he explained about Iris and that it was her first trip to London and they let us take our plates over to the flat to eat in the sitting room so Iris could relax. The restaurant owners’ refreshingly relaxed attitude made me smile; they understood that for her having a meal in a restaurant would be too much – she needed peace and space to move.
The following morning we all left the flat in high spirits. The plan seemed to be working and we were off to visit the Natural History Museum. We asked the taxi driver to put Classic FM on and the theme tune to Jurassic Park by John Williams started to play. It was as if it was a sign and everything was slotting into place. The music was inspiring, so when we arrived I wasn’t nervous at all about Iris and how she would react to the museum. But the crowds were already starting to gather even though it had only just opened and as we waited a rep from the museum started to hype up the crowd.
‘Are you excited?’
‘Yes’ everyone shouted.
Iris leapt at me, terrified. The sudden burst of noise was too much.
And then as we came into the entrance our bags were checked. Iris’s favourite child loo seat and books were unearthed, and P-J struggled to get them all back into the rucksack. Tourists crowded around us and flashes of lights from their cameras were going off by the second as they saw the ginormous dinosaur in the central hall. Iris started to cry and we walked quickly away from the crowd up the stairs to try to escape the chaos echoing around us. But the problem was that the higher we climbed the more intense the noises seemed to become and Iris became inconsolable in P-J’s arms. After many wrong turns we found our way to the big blue whale, a highlight in my mind that I thought Iris would love. But it was game over – another few flashes from a tourist camera and a meltdown began.
I could tell she was way past seeing, hearing or understanding her surroundings. She needed quiet, to be away from all those stuffed animals, that seemed to suddenly be everywhere, surrounding us. We walked frantically to try to find our way out, the voiceovers describing various animals and their habitats blaring out as our movement set them off. The voices reverberating around us, we kept going until we found the exit to the garden.
I tried to talk to P-J through the cries, suggesting he played some music on the iPhone, but he could hardly hear. Eventually we got it on, and after a while Iris settled with the trees and greenery surrounding her.
I didn’t want it to end like this; I wanted to make good memories not bad, and we couldn’t leave London now. I felt like the goal of Sweden was slipping away and it made me question if what we were doing was asking too much of Iris at this point. We decided that if Iris calmed down in the taxi we would try London Zoo. She had always adored going to the zoo. It was something familiar, surely a perfect day out in London. Why I thought dead animals behind glass would be fun was beyond me. I had fallen into the same old trap, recreating childhood memories of my own.
Story, acrylic, September 2015
But it turned out the zoo was no better. Work was being done in the grounds and we walked by crowds of school children. Once we overtook one lot, another would be on our tail. I felt as though it was a scene from Tom and Jerry: we were being chased and there were obstacles continually in our way. Angle grinders and cement mixers made way for agricultural-sized lawn mowers, then on to the penguin show with squeals and screams from masses of children. One after another our decisions were terrible so we made our escape, leaping into the next available taxi and heading straight back to the flat.
P-J and I looked at each other. It was time to return to the Shire. Iris felt it too and was suddenly remarkably content on the ride back. She observed the city from the cool safety of her big black taxi cab and after a pizza we were heading home on the train through green fields, woods and rolling hills.
On our way home I had many regrets and started to once again question our motives. I had promised to follow, to be patient and kind. Was I losing that in this mission to experience a moment in time out in Stockholm? Then I thought of all our successes and decided that we were indeed making wonderful progress. I understood where we had gone wrong: taking her to busy museums, her senses had been overwhelmed. We were thinking of our childhoods and not focusing on Iris. If Stockholm was to be a success, we would need to follow Iris more carefully, to stop trying to do so much and to enjoy the simple pleasures. If Iris wanted to spend the days renting bikes and exploring the parks, looking at fountains, then that is what we would do. No more traipsing around museums; we would watch the water, the reflections, the boats and trees, and experience the city through Iris’s eyes. We were asking a great deal from Iris so in return we would need to allow her to enjoy the trip in her own way.
Although Iris had come so far nothing would change the fact that she still experiences and feels the world differently; she will always be on the spectrum. She slides along that spectrum from moment to moment, and what we see on the surface is a fraction of what she is experiencing and feeling. Her communication skills have improved immensely but when under pressure those advances can fall away.
A few weeks later we had another reminder of the fine line we were treading. James and Carolina were celebrating the Swedish midsummer with a tra
ditional lunch at my parents’ house. When we arrived my father was out taking Indy for a walk and my mother was finishing off some wedding flowers somewhere. Although the house had become a home from home for Iris, the set-up today was different to normal. There were Swedish friends in the kitchen, strangers to Iris, and she didn’t cope well with the chatter and noise. She tried to settle but couldn’t. We went upstairs to my old room, which usually served as a second playroom if it was too noisy for her downstairs, but with all the guests staying the rooms looked different to Iris, their bags and other details seemed to annoy her. She started to cry saying, ‘Mummy, back, Mummy, back’ – her way of saying let’s go home. I couldn’t believe we were back there again, at the point of scarpering off home because she couldn’t handle a lunch party. Part of me felt so disappointed. We had achieved too much to leave now and I really wanted to stay. It was the last time I was going to see my brother before the wedding. I tried everything: books, iPad, a walk in the garden. It rained hard and that was the final straw; she became very upset, grabbing at my face, and she shook with frustration so I took her for a drive, an old trick that I hadn’t resorted to in a long time.
It worked and on my way back I thought of some music videos I could play for her on my mother’s computer. They worked like a dream and my mother and father arrived back home with Indy and the house started to feel as it should again for Iris. She didn’t want to join us for the lunch; she stayed on the sofa with her books. We were able to be there for the lunch and at last she was content but I was worried: she seemed to be slipping back into old habits.
We celebrated midsummer with Swedish songs, shots of schnapps and all sorts of delicacies. Once the rain stopped falling we ate our main course of meatballs out in the garden and James managed to get Iris to join us. He raced around the garden with her on his shoulders, and she laughed and flapped her hands with excitement doing her little jig. I was relieved Iris had been able to join us and have some fun for a while. I felt quite emotional watching James. It was wonderful that someone else could go to her rescue, encouraging her. She had her family surrounding her and she was accepting their help.
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