Music at Sunrise, acrylic, March 2013
It was the unpredictability of being out and about that proved so taxing for Iris: children would suddenly squeal or scream, cars beeped, alarms were triggered, people chatted and shouted across the park to their friends or their child that was straying too far, and mobile phones rang with different ringtones all over the place. When we went into cafés the coffee machines hissed and clunked, the cutlery clinked and chairs scraped against the floors. Iris would recoil and cry at the intrusive clatter that seemed to reverberate around her. After lunch at my parents’ on a Sunday, if the Formula One racing was on my father would have the television volume up and Iris would either be hyperactive or get upset by the noise. In these tricky situations I couldn’t help but feel the urge to scoop her up and take her home, where I could at least control her environment to a certain extent to reduce the triggers. This feeling led to many weeks spent avoiding most public places. I could feel myself becoming more detached from the outside world. I was still working hard with my wedding photography so spent most weekends in meetings or at weddings; my life was at polar extremes: super social to the point of being relentless and exhausting at work, then isolation at home during the week.
Iris was most happy at home, or when we were out and about checking venues for weddings, locations for photo shoots, or exploring churches and gardens. It soon became clear how much Iris enjoyed spending time in the garden; it was the one place where she didn’t retreat with her books. She was happy there and I found I was too. We would look at the flowers and I would talk about everything we saw. Walks were also a comfort: daily outings pushing Iris’s stroller along the country roads, with her watching the canopy above, but even they came with an added sting. Iris would not under any circumstances wear anything on her feet – not socks or shoes. When the weather was cold the disapproving looks from others hurt. I could tell what they were thinking as I tried once again to cover up her feet with a blanket but out they came like a spring in a jack-in-the-box, her tiny pink feet determined to feel the cold air.
In the summer of 2010 when Iris was ten months old we tried all sorts of different activities and outings with her, but the same issues arouse again and again. The problem appeared to be rooted in being around other people, especially ones her own age. She found their random actions and chaotic nature deeply disturbing. I began to research, to try to find some answers to why life was more challenging for Iris. P-J started to see what I was observing too and was convinced it wasn’t her hearing after doing some of his own ad hoc tests at home. Then in June his family went through the darkest of times with the loss of his father. His death came as a massive shock and P-J was, of course, grieving. He threw himself into organizing everything: the funeral and then the probate of the estate, managing all the affairs. I didn’t want to burden him with more turmoil so for a while my search went on alone.
I was lucky to have my mother as a support. Once I turned up at her door after a play date in tears as the differences in Iris were too hard to deny. I felt like I had been clobbered with the reality that something was seriously wrong; I had been concerned before but hoped she just needed time to develop. Iris was slipping further behind her peers and the more we pretended all was well to others the worse I felt. It was like I was living this double life in so many ways, saying what people wanted me to say, that everything was fine and that we were well. My smile was hiding how I really felt, and I couldn’t smile any more. It used to be easy: Iris was such a pretty girl, everybody warmed to her as soon as they saw her and there was always a plausible excuse for her behaviour around others: ‘She had a bad night’, ‘teething’, ‘tummy ache’, ‘I’ve forgotten her favourite toy …’, but I was on the edge. I couldn’t go on pretending.
Although we thought she could hear us we couldn’t ignore the fact that there might still be a problem with her hearing because it would explain so much about her behaviour and her speech delay. She still wasn’t saying anything more than those initial first attempts at ‘dada’ and ‘mama’. In fact, she had regressed and we weren’t hearing any more sounds. She was communicating physically with a few gestures and was very independent, unlike her peers who by now were learning many words and starting to put together short sentences. She hardly wanted our attention at all; most of the time, if we tried, she would cry or move away, and that became even more intense with everyone else apart from me. At times when we were alone and the house was quiet I would see a glimpse of how she could be but I was seeing that less and less. I always had to feed her from the left side with no one else around. It had started with breastfeeding and now it was the same with anything we tried to give her, like her water bottle. She had become sensitive on many levels. Her reluctance to socialize and her fear of busy places also couldn’t be overlooked any more.
We began the process of getting her hearing tested. But after many frustrating meetings and assessments without any definite conclusions, P-J found a charity in Cambridgeshire that could see Iris right away, so that we could have her hearing tested extensively. With these results we had enough information to fast-track Iris through the system, justifying an auditory brainstem response test in the local hospital to prove once and for all if she had any hearing problems. She was sedated and they placed electrodes on her scalp to pick up the signals that were generated in the inner ear. These signals travel along the nerve to the brainstem then into her brain.
As we waited for Iris to wake after the test the doctors were analysing the data. I couldn’t help but think of all the information I had already read about, and what we would do if she was deaf. I had started learning some sign language already but the reality of what we were potentially facing really worried me. This wasn’t just research on the internet; this could be our lives from now on – Iris’s life from now on. It broke my heart to think that maybe all this time she hadn’t been able to hear my voice. I didn’t know how to reach her when she was in her own world and without my voice I felt helpless. I also felt confused. Why did music have such an effect upon her? Was she just feeling the vibrations? Was that why she was so sensitive, almost feeling the music with her fingers? The waiting room felt like it was closing in on me so I paced up and down the hallway. I couldn’t wait to leave but we needed to face this: I needed to be strong for Iris and when she woke I stroked her forehead and told her that I loved her and everything would be fine, but without knowing if she could hear me or not I felt like crying. A doctor came down the hall with Iris’s file in her hand and talked us through the results. It was what we had been hoping for; her hearing was, in fact, better than normal. She could hear everything just perfectly.
With that question answered, for a while life seemed to settle. There wasn’t any kind of follow-up from the professionals and there was such a sense of relief within the family that Iris’s hearing was fine that it felt like respite from the worry and uncertainty. It was a brief indulgence that only made what came next even more difficult to handle.
We had decided to take our first holiday. Iris was still so young, not yet two years old, and preferred being in nature, so we thought Cornwall would be perfect. In May 2011, before the busy holiday season, we drove the 310 miles down to a very pretty area of the coast. The car was packed full. I seemed to have fitted a whole children’s library and playroom into the boot, along with buckets and spades. I had been thinking of my first holidays in the Isle of Wight, nostalgic thoughts of my brother and me happy on the beach, making sandcastles, paddling, exploring and looking at rock pools. We made the last turn down a road that became a single-lane country track and caught our first glimpse of the coast. The sea was turquoise and the rugged landscape exhilarating.
We drove along, trying to find our rented cottage. Iris had been very well behaved on the journey but we had all had enough and couldn’t wait to stretch our legs and have a cup of tea looking at the view. However, the directions to the cottage weren’t clear and we ended up driving to the owner’s house so then had to
back our way out to find the right turn. As P-J reversed down the steep curved drive the car slid down the bank and we found ourselves in a precarious position with the car’s passenger-side back wheel a metre and a half in the air above the steep slope and the cliff not too far away.
‘Oh, well, this is just fantastic!’ I said sarcastically, angry and upset. ‘Now what?’
‘I think you two should get out now. Carefully,’ replied P-J, shocked.
I twisted back and got Iris out of her seat, gave her to P-J and slowly opened my door. I climbed out, then carried Iris to safety. P-J gently got out of the car and we sat looking at the stupid scene before us – my car with all its underbelly showing and the stunning view beyond in the late-afternoon sun. I felt upset with P-J for ruining the start of our first holiday. Of course I was relieved everyone was fine but I felt agitated: we had been looking forward to this and it was a much needed change from the cycle of sleeplessness at home. I needed some relief from dramas and this was meant to be it; instead it felt like we were facing another enormous problem. We discussed the idea of finding a local farmer with a tractor but soon came to the conclusion that we had better just use the AA; it might take a while but we didn’t want to start our holiday by annoying the neighbours. I needed to keep calm for Iris, so we went off to the cottage while P-J rang the AA to come and salvage the situation. Hours later, with the car back on all four wheels and finally all unpacked our holiday began.
To make up for the disastrous arrival, P-J suggested an evening walk down to the sea and with Iris on his back we made our way down the pretty coastal paths to the beach. The sun was low, there was a golden mist above the crashing waves and we walked along the beach for a while. Iris was tired but content on her father’s back. The sea’s majestic beauty made me forget everything and with peace restored we made our way back to the cottage.
Our week was filled with highs and lows. Iris walked for the first time freely with no help and it was like lift-off in that department. We had been hoping for a while that she would walk as it was another milestone that was of concern, so we couldn’t have been more delighted when we watched her make her way across the cottage kitchen all on her own. The blissful moment was short and sweet as the realization about where we were and our total lack of preparation for this event crashed in on us. I hadn’t brought any gadgets with me – no stair gates – and we had rented a cottage at the edge of a cliff because when we had booked Iris couldn’t walk unaided.
Sunflakes, acrylic, January 2014
The nights were even harder than at home. I can’t recall her sleeping for more than an hour at a time for the whole holiday. Our routine had changed and that wasn’t a good move in Iris’s book. I would hear her during the night and find her sitting bolt upright staring into space, a distant glazed look in her eyes, unresponsive when I talked to her. She would only fall asleep again lying next to me. She became more controlling over what toys she played with and what she watched. She would need the same cartoons playing over and over and she would become anxious if she didn’t have a crayon in her hand. It was the latest in a succession of items that Iris needed to hold on to; they were like a security blanket to her.
One day P-J went on a diving trip to see basking sharks. We managed with Iris in the diving shop as he rented his wetsuit, but only because there was hardly anyone else in there. Once we had left to go on our own little adventure the story wasn’t so great. Iris and I went to visit a local town filled with quaint shops. Well, I am assuming they were quaint – I couldn’t get through the door of most of them. As I held Iris to go into the shops she would turn herself into some sort of starfish. Her legs and arms would shoot outwards and catch hold of the door frame. She had become surprisingly strong and would scream if I pushed forward. If it hadn’t been so comical, I would have broken down in tears. We ended up returning to the boot of the car, which was like a makeshift playroom complete with a library and duvet. I parked up in one of the clifftop car parks and it was there that I realized how isolating her behaviour was when I wasn’t at home. I didn’t have the support of my mother bringing meals and the safe retreat of our garden. We needed to go into shops and restaurants, but they were impossible places for Iris: she would cry every time someone came close to her or when there was too much noise. I wondered why we had made this trip: was it to run away from it all? Was it more pretending: living the life we thought we should? Of course what had happened was that we were confronted with it head-on. But the worst thing was that I didn’t even know what ‘it’ was. No one could give me any answers. All I had got was advice, tonnes of parenting advice, most of which had been proved useless.
Later I parked the car, waiting for P-J to return from his diving trip. I wasn’t sure if it was the adrenalin from the unbelievably steep track down to the sea or the concerns over Iris but I was starting to feel very tired. I just wanted to go to sleep and forget it all, to wake and find my life as I had planned it. Well, maybe not quite as planned – I realize not everything can go to plan – but I wished that sometimes we could enjoy the things that others did with ease. I hadn’t slept properly for what seemed like an eternity and I could barely think straight any more. But underneath this I knew something was happening with Iris and that we needed to find out what it was.
P-J arrived and slung all his kit in the back and kissed Iris, then swapped places with me to drive.
‘So how was it?’ I asked, trying to keep my voice upbeat and enthusiastic.
‘Amazing! We went out on the boat for about thirty minutes. The captain warned us we might not see any sharks and then we saw three! One was so interested in the boat and when it was safe to get in I saw the biggest one swim towards me. Its huge mouth was wide open and then it went right under where I was, so I got to see all of it from the top too.’
‘How big were they?’
‘About eight metres long … How was your day?’
‘Not great.’ I looked back at Iris, who was completely absorbed in her alphabet book. ‘Tell me more about the trip: was the water cold?’
‘Freezing. It gave me a headache after a while so I could only do short stints with my head down but it was so worth it.’
I listened to P-J as he enthusiastically talked about his incredible adventure and tried my best to share his excitement – after all, it was giant basking sharks, a once-in-a-lifetime experience, and by the sounds of it he had had a mind-blowing encounter, but I was struggling.
We had tried our best and yet most things we did seemed to upset Iris. I felt she was becoming more distant from us at times, pushing us away to play alone and not wanting to look at us, avoiding any contact. But then she could be so affectionate and loved to snuggle in and hug me, although that wasn’t the case with P-J. It was very hard for him to connect with her apart from when he served a purpose, like when she rode on his back in the baby carrier. Whenever she pushed him away at home there was always the distraction of something else to be getting on with, but in that small cottage with just the three of us and no work to do these issues were highlighted.
As P-J sat down beside her she waved her arm around and then shot it out sideways to push him out of her space.
‘What’s wrong, Iris?’ He tried to hug her but she pushed him away again and started to cry.
I gestured for him to move away from us. ‘She doesn’t want you to sit there.’
‘Well, where am I meant to sit then?’ He walked off to the kitchen, clearly agitated.
With only one sofa and a rather uncomfortable chair as seating options I could see his point. I understood how painful it was to be pushed out but I hated seeing Iris upset. My first reaction was always to sort the problem and so often that meant P-J being sent away, and I worried that it was moving us further apart too. It was like a double rejection from both of us, but I was too exhausted to do anything but keep the peace.
In more difficult times P-J would remark that it wouldn’t matter if he was there or not, but I didn’t believe that �
� I could see she loved him. It was hard to hold on to this, though, when so often our efforts would backfire. When we tried to involve ourselves in her play it would more than likely end in tears, sometimes on both sides. She detested the feeling of sand on her feet and would scream wildly if I tried to put her down on the beach. I felt like chucking the brightly coloured bucket and spade off the cliff. They were a constant reminder of yet another childhood experience that she was missing out on, another aspect of our lives that I was failing miserably at. The only time she seemed happy was on P-J’s back supported by the baby carrier. Then she would put her arms and feet out, spreading her fingers wide to feel the coastal wind.
I had to admit defeat and we returned home a few days early to try to regain some energy and to refocus. I needed answers.
Many of the quirks and behaviours we could shrug off and laugh about, but others were impossible to deny. P-J believed that she was a slow developer in certain areas like her speech, but he had heard from family that it wasn’t an unusual trait, so at first he wasn’t as concerned as I was. His happy-go-lucky nature believed that she would get there soon enough, and he always looked at her so fondly while she was absorbed in her books. He generally spent time with Iris when I was at work and that meant there was always a plausible reason for her behaviour – she didn’t like change and wanted me home – but I knew none of these excuses were getting to the heart of the problem. She was fading into a world with her books and I was scared that soon, if we didn’t do something, it would be too late.
Iris Grace Page 4