Fable, acrylic, July 2013
All I wanted to do was hold my little girl but she was with my parents at home. As P-J and I drove back we were both quiet. It was sinking in and we needed time to think: for P-J to come to terms with what he had just been told and for me to focus on the positive and to believe that we could really make a difference and help Iris. We had known for months that this diagnosis was a very high possibility, but I think we had both been secretly hoping that it was just developmental delays and that everything would be fine, especially since I had been seeing some improvements. P-J was normally so positive but this news felt firm, almost concrete, and it seemed to squash all hope, making his usually happy face look cold and withdrawn. As I opened the door my mother was there. I didn’t need to say anything. She held me and then I hugged Iris. I heard her say, ‘We’re here for you. We’ll get through this.’
Our plans for Christmas were a welcome distraction. We had invited both families; it was to be a party of twelve. I’m not sure how the idea came about, but I was thrilled about having something to look forward to and to finally be in the new part of our home. There was just one hitch in the plan: the extension wasn’t anywhere near ready yet. With only a week to go it was action stations to make it all happen. We were both more determined than ever to have a wonderful holiday. But the more we tried, the more things fell apart.
‘It will be amazing!’ said P-J. Then the delivery van arrived with our long-awaited oak floorboards and they were awful: terribly stained and with knots all over the place. They were not what we had ordered and all of them had to go back. The next delivery wasn’t going to be until the second week in January.
‘Don’t worry, who needs smart flooring? We can just use rugs or something. The concrete will be fine if it’s swept.’
‘Not quite the romantic Christmassy look I was going for, P-J,’ I replied.
Then we received a call about the special spotlights I had ordered – they weren’t going to be shipped in time. Massive delays there too. P-J grinned at me, his Panama hat, ski jacket and work gloves on in our cold, slightly damp, extension. ‘Candles?’
I couldn’t help but laugh at the room. ‘For heaven’s sake, this is getting ridiculous.’ The doors had only just been fitted during a very heavy rainfall, which didn’t exactly improve the mood of our cantankerous carpenter, and the plaster wasn’t dry enough to paint due to the delays in putting the glass and doors in. Ladders, buckets, paint pots and rubbish were dotted about the room and there was a rather unappetizing smell.
P-J started sweeping the floor: huge clouds of grey concrete dust totally obscured my view of him and all I could hear was a muffled voice.
‘What?’ I said, then saw him looking even more ridiculous with a bandana over his mouth to stop him breathing in the dust.
‘Don’t worry!’ he shouted out to me. ‘It’ll be fine!’
Undeterred by the various problems, we marched on. I pulled in a favour with one of our local wedding venues and borrowed a huge roll of old marquee carpet. We lined the floor with giant tarpaulins, which in the end wasn’t the greatest plan, since even with the carpet over the top they gave a sort of squeaky crunch underfoot.
‘It sounds terrible. Do you think we should just take the tarpaulins away?’
P-J was beginning to bring in some of the furniture we needed: extra chairs and another table to extend our dining-room table. ‘No way! There’s no time. This will have to work as it is.’
I adorned the beams with foliage from the garden and Christmas decorations: little robins and red berries among the greenery. We set up side tables and lamps, candles for more lighting and I decorated an enormous three-metre-tall Christmas tree late on Christmas Eve. The effect was very festive, with fairy lights and greenery framing the view of the gable end. It was romantic and pretty – if you squinted your eyes and ignored the rumpled carpet and drying plaster. With ivy draping from the trusses and the fire roaring, champagne in the fridge, and all the food bought and ready to be cooked we were in fine spirits on Christmas Day morning. And then the oil-fired Rayburn cooker went out. I couldn’t cook anything on it or in it or even heat water.
You would think that we would take notice of the signs, but oh no. On we went.
‘You can’t be serious! Why don’t you all just come over here?’ said my mother on the phone. ‘Darling, you’ve done your best, but the room just isn’t ready yet – and now the cooker. Blooming thing. Do you remember when ours went out? It’s always at the worst time. Did you try to turn it up? Change the settings? Anyway, I’m worried. You’re taking on too much. I know you must be tired.’
I almost burst into tears. My mother could tell what I was thinking. I needed the distraction, I needed not to think about the future and I needed to enjoy a magical Christmas. Ever since I could remember my mother had turned their country house into an enchanted wonderland at Christmas. We would decorate the tree and beams together and listen to carols, going completely overboard on the decorations, and there would be flowers, log fires, candles and a party on Christmas Eve. I adored it all and it was always a very special time of year for me. I hated the idea that everything was going to be ruined because of a stupid old cooker. And yes, we had tried to turn it up. It was as if it had said, ‘You have to be kidding me,’ and gone to sleep, not to be woken until the new year when we would be able to get it serviced.
Tale of Green, acrylic, November 2014
‘I’ve got an idea,’ my mother said. ‘I’ll cook everything here. I can bring over the hot plate and do the last parts with you but I’ll get the turkey done and all the roasted vegetables and gravy … and I’ll bring it all over in the car.’
The logical thing to have done would be for everyone to be over at my parents’. Their house was just ten minutes away, but I was way past logic. We were on a mission and needed to see this through. So my poor mother brought a whole Christmas lunch for twelve in her car, spilling some into the boot as she raced over to ours to try to keep it all warm.
The idea of Christmas at ours was, of course, different in reality. Factors beyond my control meant that things went from bad to worse. Some of the family were really late to arrive after getting lost on their journey, which meant after all that effort the food was past its best and everyone was very hungry, ate too many canapés and had too many drinks before lunch. Iris found the whole situation hard to handle and instead of having fun and it being a break from our worries it only compounded them. Apart from my parents, we hadn’t told anybody else about Iris’s diagnosis so it was hard to explain her behaviour. I couldn’t talk about it yet; I just wasn’t ready, and it certainly wasn’t the right day to start. P-J and I took it in turns to check on Iris in her playroom and I sat with her for a while after lunch while everyone was having their coffee. She was completely absorbed in her favourite book, hardly even noticing me or what day it was, apart from the fact that she wanted to stay as far away from all that noise as possible and ignore everybody, and that included me. I tried to hug her and she pushed me away, and then the guilt set in: all the progress we had made over the past months and I went and did this. Was I mad? It had been a more testing day than I had ever imagined in so many ways. I now wanted Christmas to be over. I was failing at what I had set out to do all those months ago and I wished for it to be a new day and a fresh start so we could try again.
Everyone was asleep and the outside world had gone quiet. I tiptoed over to the window – even though it was early, it seemed brighter than usual. The snow covered everything: no one wanted to brave the hill and not one car had passed our home. The new year had brought so much hope. Hope for all the help we would finally access. We would no longer be doing this alone. I was looking forward to learning more and working with professionals who could guide us.
But as the weeks wore on, and more difficulties arose at home with Iris’s behaviour, I realized there we didn’t have the great support team I had been hoping for after the diagnosis. Instead there was just
a file containing basic information about autism and contact details for charities and groups that might offer support. Most of them turned out to be out of date. Some numbers did work, but as the tired voices at the other end explained how with a lack of funding they had been closed for a while the reality of what I was facing began to sink in. I would need to pick myself up after the disappointments at Christmas and carry on as planned. I had to follow Iris, to understand her behaviour and the difficulties she experienced. To move forward we needed to build on her strengths.
Her more repetitive behaviour, like ripping up pieces of tissue paper, appeared at first to be irritating habits that caused mess, but I began to look at life in another way and to use behaviour like this to our advantage. They were an opportunity for us to interact, to do some speech therapy with her by counting as she dropped the ribbons of tissue that gracefully fell to the ground. I realized that Iris liked to watch things fall, so I bought a bulk load of large colourful buttons that she could drop into water and after their success many more items followed, providing times where we could interact easily. Sometimes I didn’t know if feeding her interests in this way was the right choice. Although she was only two years old she would get easily stuck in a repetitive loop, wanting to see the same action again and again. She could be very persuasive in getting what she wanted, taking my hand or P-J’s back to the items, and we were so happy to be included in her play that mostly we went with it. But at times her obsessive nature would escalate and if the activity was taken away she would become inconsolable like any child her age. As these tensions and anxieties mounted, my most reliable solution would be to take her outside into the garden where she immediately relaxed. It seemed to work almost every time but when the weather was bad that wasn’t possible. I would then see her plummet out of control and I felt helpless as I tried to avoid the inevitable meltdown. It wouldn’t take much if she was on the edge; it could just be the sound of newspaper being crumpled up to light the fire. They were like tantrums that were beyond Iris’s control. She cried and shook with frustration, and all I could do was to try to minimize what seemed to be upsetting her. If I tried to hug her, she would lash out. At times wrapping her duvet round her would help, as it seemed to calm her, but at other times this would aggravate her to a whole other level. It was as though when she felt like things were out of control – externally from a noisy or confusing environment, or internally from her own compulsive behaviour – it triggered anguish inside her. She threw herself to the ground, hitting the floor with her fists and even hitting her own tummy or biting her wrist. She didn’t seem to care about her safety and it was frightening to watch. She would bite into her toys with her face turning red and shaking, not looking at me or even caring if her actions were getting a reaction from us. It wasn’t attention-seeking or a cry for help; it was like she didn’t have any control any more and that her feelings had to come out somehow. Sometimes these episodes would last for hours, while other times we would have days that seemed to be one meltdown after another.
I started to hate the winter and the grey days with curtains of rain trapping us all inside. Some meltdowns would seem like they were over until the pressures started to build and once again Iris’s fury would return. P-J and I would take it in turns to help her through them. Then there would be nothing for weeks and there was a sense of relief – maybe it had just been a phase – but then something would happen to trigger another. Generally they came after she had been managing well in a social situation but we had pushed it too far and stayed too long. Quite often it happened when we got home. All it took was a noise like the dishwasher being unpacked, and the clattering of plates and cutlery would overload her mind and she would fill with uncontrollable emotion. Some people describe meltdowns as if the child is shutting down, but for Iris it seemed more like everything was going at full speed and I needed to find a way to slow it down, to help her before she got to that moment of chaos. I dreaded it happening when we were out. People would try to help by waving a toy and trying their best to distract her. But these movements and noises and the intense face-to-face contact were agony to Iris, intensifying the turbulent world surrounding her, and I felt it too. Dealing with her meltdowns was the most exhausting process. I felt like I had been hit by a truck. They affected me emotionally for days. The sadness I felt from seeing our darling girl like that was heart-wrenching; it was as though I was being tortured in the worst possible way. I wanted so much for her to talk to me, for her to tell me what was happening so I could try to somehow prevent them. The frustration and hopelessness of her mostly silent world was as relentless as the sleep deprivation.
Thistledown, acrylic, September 2013
P-J and I discussed the problems at length. Knowing what was causing the meltdowns and how best we could stop them from happening was a good place to start. Meltdowns seemed to be a part of autism that the doctors expected at one time or another and they looked on them as commonplace, but I couldn’t understand why they were so accepting. Up until Christmas she hadn’t had that many meltdowns but the gloomy weather in the new year brought many more and I could not accept the doctors’ view on this. I wanted to do everything in my power to understand Iris on a deeper level, using observation and taking her lead. I needed to be more vigilant and watch for the signs, to forget about what friends thought if I left early or wasn’t at the table for lunch, to forget about social pressures and to focus on Iris.
The snow made me feel like it was a fresh start, I wanted to wake Iris and P-J and go sledging, to replace the difficult memories with happy ones. Iris had not been out in the snow yet and I couldn’t wait to see what she thought of it, intrigued to see our little nature lover in her magical garden cloaked in white. Of course there was the issue of her not liking anything on her feet; I would need Iris to be OK with her boots and gloves on. Another problematic hurdle to overcome, but first I needed a cup of tea.
I went downstairs to prepare myself for another day. While the kettle boiled I sorted Iris’s books that were scattered over all the surfaces. There were forms on the kitchen table that I had filled in for various courses for Iris. January had gone by without any particular change. We were on a waiting list for a speech therapist and had enrolled in a class to teach us all about autism and how we could help Iris. Some of the information we gleaned there was very useful, but as each week went on I found their attitude and approach unsettling. I just couldn’t understand how their techniques were going to work with Iris. It all seemed so rigid and some of it out of date compared to the latest research I was reading. The system they were suggesting was called PECS, Picture Exchange Communication System. With this system, a child is taught to communicate with an adult by giving them a card with a picture on it. The trouble was Iris wasn’t responding to this method at all; in fact, it was having the reverse effect. It was causing upset and frustrations, causing Iris to move away from us and wanting to spend even more time alone. It didn’t seem to matter how many beautiful cards I made. They never conveyed the concept, item or wish she desired. It was as if we were on a conveyor belt of parents with diagnosed children. This was the standard information that they gave out to everybody; it hadn’t changed for quite some time and there were no alternative options or therapies that they recommended. It was their set routine to follow, packed full of visual schedules all neatly laminated, their generic formula or nothing at all – and that was something I didn’t trust. This was definitely not a one-size-fits-all situation. After all, the definition of autism itself describes it as a ‘spectrum condition’. The information we had wasn’t tailored to Iris, her age group or our needs; it was just a guide to what has worked for schools and families in the past. Another massive file of notes with more contact details.
I found a pen in the kitchen and went through my notes, highlighting the points that I believed in and the suggestions that I could see working. I spread them across the table, and began to write down more: plans, ideas, items I needed to buy, things that I knew Iri
s liked. Every note sparked off more and more ideas. Before I knew it I had months’ worth of activities all plotted out in front of me and I hadn’t even had breakfast yet. I was going to take play therapy to a new level. Our house would become a fun house, a sensory wonderland. I would learn from Iris what calmed her, what excited her, what intrigued her, and create spaces that facilitated and encouraged learning and communication as well as helping her with her sensory needs.
I had highlighted one note that I kept coming back to. It was about the positioning of furniture in a room and how it had an impact on behaviour. I began to think about our home and what I had already experienced. How if a table was placed in the middle of a room, surrounded by open space, it enticed Iris to circle it in an almost uncontrollable movement, around and around. However, with the table banked on one side, her focus was clear. By taking the time to understand her behaviour and the reasons behind it, and seeing the world through her eyes, I would be able to connect with her more effectively. Such minor, seemingly insignificant details can make the difference between chaos and harmony. With that in mind I noted what furniture I wanted to move, seeing how I could mould our house to help Iris.
‘What’s all this?’ P-J said, still in his dressing gown and looking at me with his scruffy mad-professor morning hair. ‘More lists I see! What are you up to, Bean?’ Bean was my nickname and it had morphed into Iris’s too. She was known affectionately as ‘Beanie Deux’, but mostly we would drop the ‘deux’ and just call her Beanie.
‘Well, you know we haven’t actually seen the speech therapist yet, and I don’t know how many sessions we will get. They are talking about five or six a year; it doesn’t seem right! So, we need a plan. I think we were making progress before Christmas, don’t you?’
Iris Grace Page 7