Finding Harmony

by Sally Hyder

  The extension was designed for a wheelchair-user: doors were widened and we spent months on the kitchen design. Some of the surfaces are dropped, others the right height for able-bodied people to use. The hob is on a dropped surface with a lock in case Melissa decides to ‘play’. We keep my teabags in with the mugs, in the cupboard underneath the kettle where I can reach them. I also had the cupboard cut away under the sink with a ‘half’ cupboard underneath it – that way, I can wheel under the sink but the pipes are enclosed. My oven has a slide-away door so I don’t have to reach over it or keep to one side of a hot oven to get things out. It works for me as a wheelchair-user but it doesn’t scream ‘disabled’.

  The front of the house was mono-blocked to eliminate uneven surfacing and get rid of the steps leading up to the front door. It was cleverly done and the ramp up to the front door is all but invisible. The contractors also transplanted the privet hedge and now I can virtually drive to the front door. For the first time in years I could also get into the back garden. We had a wooden deck built and ramps that take me on a smooth elegant catwalk all the way from the back door to the back of the garden. From there, I can get to the garage where my disabled scooter lives. Once again I’m able to sit in my own garden having a coffee.

  ‘This is so unfair,’ declared Peter. ‘After all those years of wanting a skateboard ramp and you wouldn’t build me one. Now you’ve built one and I don’t skateboard any more!’

  He had a point.

  So there we were in Wales, with Melissa weeping and washing her hands over the wrong Seekers’ CD while I was exhausted and distressed. I spoke to the community paediatrician, who promised to phone me when we returned to Edinburgh. The next day, Melissa and I caught the plane and were picked up from the airport by Andrew.

  It was lovely to be home but as we cleared the table after tea, Clara and Peter retreated to their bedrooms and I heard doors close and music thudding through the ceiling; I realised how disconnected I felt from them. Peter and Clara were now teenagers and they needed their own space. It was a stage of life, a fact of life. Yet because I couldn’t go bounding upstairs on the pretext of looking for dirty laundry or to find out what Peter was doing tomorrow, I didn’t know what they were doing – or thinking. I felt doubly isolated from them.

  I’d got to the stage where to wake them up in the morning I’d call their mobiles. I had my phone on me permanently, as did Peter and Clara. It was how we communicated inside and outside the house. I was also conscious of their need to escape the permanent screaming and distress downstairs: Mum wobbly in her wheel-chair and Melissa descending into panic and all the while me thinking, we’re losing her.

  The feelings of depression were scaring me and I knew being depressed was a far more disabling condition than the physical symptoms of MS. I didn’t want to go back to that dark place, those woods, that fear and panic. The summer had taken its toll. Sensing the onset of depression, I rang the social worker.

  ‘I’m not coping,’ I said. ‘We’re on our knees.’

  The social worker for children affected by disability was hugely supportive but couldn’t do much. The community paediatrician rang as promised and we were fast-tracked into a communication disorder clinic. Suddenly we had a condition, a passport to support: we went from zilch to something – at least it was more than before.

  I remember Andrew sitting with me in the room in September 2008 and being told, very gently by the consultant, that Melissa was indeed on the autism spectrum. At last! Neither of us was really surprised, more relieved there was now a label for our daughter’s strange behaviour and fears. After I asked when the follow-up appointment would be, I was told there wouldn’t be one.

  OK, so we’re on our own again.

  Back home, I immediately went on the Internet and found both the National Autistic Society and the Lothian Autistic Society. The NAS had a superb course for parents/ carers of newly diagnosed children; it was informative and helpful. There were so many things that made sense and so many suggestions to help. We used their befriending service and found a lovely young lady called Katy to help Melissa have fun. So, all of the work with Melissa is done by us or by friends, but knowledge helps, too.

  Thanks to the social worker we were granted a few emergency respite hours during which Melissa would go off with an experienced autism worker. She loved it. I also valued the advice and help: I was taught some magic tricks to stem the panics and how to make timetables, time-lines and social stories to help Melissa manage her fear of uncertainty and the constant threat of chaos.

  That summer we took Peter and Clara to a performance of capoeira from Brazil at the Fringe Festival. Afterwards, no one wanted to go home and so we went to a café for coffee and puddings. We all kept looking round as though part of us was missing.

  ‘This makes a change,’ observed Peter. ‘We’re actually going to finish a conversation?’

  ‘But it’s so quiet without Melissa,’ said Clara.

  All of us were wracked by the same conflict of emotions: on the one hand we missed Melissa, her constant questions and high-pitched chatter; on the other hand we were enjoying the opportunity to talk in a grown-up, conceptual way. We could leap from idea to idea without having to explain why blinded didn’t literally mean to be blind, or pulling a leg wasn’t physically pulling a leg. And we could talk in depth without dodging topics that might induce a panic. It was important for all of us to have that space although the next morning, I was very happy to see Melissa’s beaming face once again.

  Chapter 10

  Hope Dawns

  September 2008. It was the first week of term, the beginning of a new school year and the house was empty. I had washed and dressed in my newly installed wet room; I’d reached the point where I needed grab rails, shower chairs and a long-handled, rubber-tipped brush (a bit like a scrubbing brush) which allowed me to wash my hair without having to keep my hands stretched above my head. The wet room gives me space and flexibility. I’d been very choosy about my grab rails: I didn’t want boring functional stainless steel, I wanted cornflower blue – and I got them.

  I got dressed apart from my socks (I can’t put socks on myself and so as usual, I had cold feet). That day, I was wearing elasticated trousers and a baggy top. My core muscles have been shot to pieces and so trying to sit upright and hold my tummy in to look slim is now useless. These days I wear what’s most comfortable for my body although I do try to avoid wearing tracksuits everyday. Tracksuits aren’t good for self-esteem nor are fashion magazines. I hate fashion magazines – they conspire to make women feel fat and inadequate but I don’t have time to explain why articles on ‘Goodbye to Cellulite’ are irrelevant when I’ve got that cotton-wool feeling in the side of my face.

  For a long time I thought that I didn’t deserve nice clothes until one day when a teenaged Clara asked: ‘Mum, can I look in your wardrobe to borrow something to wear to the party on Saturday night?’

  Little by little Clara took on the role of my personal stylist and shopper. She started going through my wardrobe and finding things for me to wear (as well as for herself!). I’m always convinced they won’t fit me but when they do, I feel so good. Clara has worked really hard to reawaken the sense of fun I used to have with clothes. We’ve had a hilarious time trying to get high heels to work with a wheelchair (they don’t, but it was fun trying). Most days I hate the way I look, but I’m happiest when Clara has dressed me. When I look at my daughter, I’m reminded that she’s no longer my little baby (well, she is, and always will be). What I mean to say is, she’s no longer the child she was. Clara loves fashion: she owns 36 pairs of shoes. She’s growing up fast and I love watching the way she puts things together and looks so slim and beautiful. These days, if I have something to attend, I’ll ask Clara to find an outfit and do my hair.

  But back to reality: it was 10am on a Monday morning. Though sockless, I was otherwise dressed and already exhausted. I got myself to the kitchen, where I fed the rabbits (Duchess and Snuffl
es) and talked to the au pair about defrosting chicken legs and making a tomato sauce. Already I’d had to advise her on which temperature to set the washing machine in order to get rid of Peter’s muddy rugby stains. Have you ever noticed how when your laundry is done by someone else, it’s not so good as if you did it yourself? Likewise, it irritates me the way the clothes are hung – they’re never hung properly. It’s just a silly thing really, but when you can’t do something yourself it’s so incredibly frustrating – and you can’t complain about the way they do it because you yourself can’t do it at all.

  As soon as I was able to do so, I escaped to my study. Some days my mind is like porridge. Imagine waking from a deep sleep or worse still, waking up after four hours of sleep and trying to get your brain in gear then imagine feeling like that everyday – that’s how the MS feels. But it’s no excuse not to do something and in this case, that something was to look for help and so I fired up the computer.

  Gazing up at the framed photos on the wall of us on Everest, I thought about the fatigue I’d experienced, having walked seven kilometres to Base Camp as the clouds came in. I considered the pleasure of pain when you’ve reached the top of the mountain: your legs are quivering like jelly and your rucksack feels as if some-one’s stuffed it with rocks; you can’t speak with exhaustion. I thought of all the difficulties we had overcome to get there too. My most severe complaint had been blistered feet and a craving for a cup of strong PG Tips and some crunchy white bread and butter. That sort of pain is satisfying, unlike the daily grind of being unable to complete simple tasks.

  My MS was becoming my new Everest, but it was an Everest I had come to dread. I dropped the pen. Well, it would have to stay there until Clara came home from school and picked it up! I hated being dependent on her. My thoughts turned back to the day ahead and the computer screen. What sort of extra support could I buy in? We already had our au pair. What else might I purchase? I studied various agency websites and their exorbitant costs – we couldn’t afford them.

  But then I googled ‘disabled assistants Scotland’. Two words popped up on the screen: ‘Canine Partners’. I clicked on.

  Assisting people with disabilities to enjoy greater independence and a greater quality of life.

  ‘Independence’ – the word jumped out at me. And so I read on. Two minutes later (in fact, probably less), I picked up the phone and rang the number on the screen. I had to know right there and then if I was the sort of person who would qualify for a Canine Partner. Curiously, I felt excited, so incredibly excited – it was a feeling I hadn’t had for a long time. I was also nervous. What would they think? What would they say?

  ‘Hello, Canine Partners.’

  A lady called Julie picked up the phone. She was based down at Canine Partners’ headquarters in Heyshott, West Sussex.

  ‘Oh hello. My name’s Sally and I was just reading about your charity on the Internet and wondering if it’s true that you cover Scotland?’ I asked.

  ‘Yes,’ she confirmed that they had indeed started to place dogs in Scotland.

  We had a long chat and I explained my predicament: about my MS and Melissa’s autism.

  ‘We don’t do joint partnerships – it would have to be your partnership,’ Julie told me.

  ‘That’s absolutely fine,’ I said. ‘I understand completely.’

  After all, if I had a dog to help me – a concept I still didn’t fully understand – then surely I would have the energy to help Melissa too?

  Julie warned me that there was a very long waiting list. However, the good news was that Scottish Canine Partners had just been set up and so I could qualify. Trembling with anticipation, I thanked her and put down the phone. Was this what I’d been looking for? Could it be the answer to my prayers?

  Two days later, as promised, I received an application pack. As soon as I’d got the kids off to school, I sat down and began filling in the form: Name. Address. Mobility levels. Main reasons for wanting a Canine Partner. I paused and took a deep breath: I had to be painfully, brutally honest about my needs and expectations here. This was it – I had nothing to lose and everything to gain. And so I began writing.

  Being asked to give ways that a canine companion could help me is like being in a restaurant and being asked to order anything you want!

  DAILY ROUTINE

  • Perhaps a dog could go upstairs and wake up the children? Certainly I would like to think he/she could go and get Peter and Clara in an emergency, i.e. if I fell.

  • Assistance with picking up shoes and socks in the morning and giving them to me. I find getting anything from the floor very difficult.

  • After the school run, I go and pick up my newspaper. The newspaper shop has a step and I usually have to wait for someone to go in and collect my newspaper for me. It would be great if a dog could go in and do this for me.

  • In my office, there are many ways a dog could help me. I struggle with retrieving files, picking up things from the floor (I always miss the waste paper basket!).

  • When I prepare dinner (with au pair), could the dog open drawers and cupboards for me?

  • By the evening I am so tired and sore that I am constantly dropping things and need to collect things to help with the children’s homework. Perhaps the dog could help with this?

  OCCASIONAL

  • Wednesdays, I take Melissa to her swimming lessons. I can definitely see how an assistance dog could help me to be a ‘proper mum’ by getting the clothes out of the swimming bag so that I can change Melissa from a sitting position.

  • Library: The library has introduced a new automated service, which I find incredibly difficult. I go every week and it would be superb if a dog could help me with putting books into slots, etc.

  • Extra shopping: The dog can perhaps help with my purse and putting things into my bag?

  • Cinema/theatre, etc: I find juggling tickets, wheelchair, programme too much. Could a dog assist?

  WEEKEND

  • (Husband home/Lie-in/Husband does weekly shop)

  • Attend church: I would feel much less ‘disabled’ if I had a dog to collect hymnbooks, etc.

  OTHER THINGS A DOG MIGHT BE ABLE TO DO

  • Use the cashpoint machine.

  • Could a dog assist me with stretching in some way? I find if someone puts weights on my leg then it assists the pain of the spasms.

  • ‘Tell’ someone who has rung the bell that I’m on my way. I often get to the door to find that the person has gone.

  • I never seem to be where the phone is, so to have it brought to me would be grand. I often find myself transferred into my chair and then realise I don’t have the remote control or phone, or some other essential device. Could a dog do it, rather than my bellowing for Clara to come and do it?

  • Alert someone if I have a problem.

  • On bad days when my arm is useless, press the button at the zebra crossing for me.

  PERSONAL STATEMENT

  I would love to have a Canine Partner. I feel as if I am constantly relying on the goodwill of others, particularly my husband and children. My condition fluctuates but my current ‘baseline’ is poor. My world has become very small and each outing requires so much energy trying to overcome obstacles. I would dearly love my kids to be kids, and me to be a fully functioning member of the world again!

  Phew! Was that asking too much? Would a furry, four-legged, canine friend really be able to provide such a level of care and commitment? Wouldn’t he rather chase foxes (we have a family of fearless foxes living behind our shed) and run after sticks? I was asking a dog to give me back my life; it was preposterous yet seemingly possible. At the same time I realised I wanted it so badly.

  The next section of the form asked the applicant to confirm their willingness and ability to exercise a dog for one hour each day. I was impressed that the dog’s best interests were given top priority but as I would soon discover, the dog’s needs are at the heart of the Canine Partners’ philosophy: your di
sability is invisible, it’s all about the dog.

  I hid the application letters, leaflets and magazines in my underwear drawer so that no one, apart from Andrew, knew. I didn’t want them to be disappointed or sceptical at this stage. It was my little nugget of fun.

  Once I’d sent off my initial application, I didn’t have to wait long before I received the next enormous bunch of forms. This time I had to fill in details about my family and me. I gave Canine Partners permission to consult my GP, my occupational therapist and my MS consultant and then I had to sign a release form. All the Scottish medical professionals I use were brilliantly efficient in sending back the right documents. My wonderful occupational therapist even faxed them a huge assessment document stating that I really needed a dog. The comments at Heyshott were: ‘Gosh, things do move quickly in Scotland!’

  Obviously I then had to let family and friends know about my secret plan. We didn’t tell Melissa at this stage because she would have assumed that we meant it would be happening immediately. Perhaps not surprisingly, most people (other than Andrew) queried the wisdom of my decision.

  ‘How can you look after a dog?’

  ‘Are you sure you can look after a dog?’

  And even: ‘Do you really think it’s a good idea to take on the responsibility of a dog as well as everything else?’

  Doubts began to set in. You only have to think of dog hero Marley in the hilarious memoir Marley & Me grab-bing the lead and shaking his head from side to side or taking off after a cat. What if he or she spied a bunch of four-legged friends on the other side of the park and bolted off, leaving me with a tangled lead? I wouldn’t be able to control a crazy puppy. Or what if the dog suddenly lunged forward and dragged me out of my wheelchair?