Aye, Nuala! Who was she when she was at home? I’d begun to forget. Where was the girl who danced all night, glass in hand, burned the candle at both ends, and sometimes in the middle too, and still came up with the big lipsticked smile? Where was Nuala? And when did she last find time to paint on the lippy? I stuck the moisturiser back in the cupboard, with the lid half on. I took a couple of tablets from the bottle next to it, cupped my shaking hand under the tap, and swigged it all back in a oner.
“Mum!”
“Nuala!”
“Will you get on with it? I’ve cleared the car and we need to get going. Sometime this year. NUALA!”
Jamie now too. Would it ever stop? I held my face in both hands and my worn gold band caught the light. Even my wedding ring looked done in. Maybe there was something in that. Where had these past five years left our marriage? In truth? Breaking point.
“Nuala!”
“MUM!”
“For God’s sake, Nuala, will you get down here?”
A bark.
Hell’s teeth. Even the dog was joining in now. I unlocked the door, leaving the unused cosmetics in the cabinet – again – and picked my way downstairs, passing the wires, and increasingly the wireless. Whatever they were. The sixteen remote controls. All that technology. All that STUFF! His stuff. Stuff I’d never understood, never wanted, and really didn’t want to begin to understand. HIS STUFF. Everywhere! Squeezing out the space. Squeezing out me. Nuala. Whoever she was. Nuala, the idiot who didn’t “get” computers. That Nuala. The Nuala who, however, did get the sensory overload that Amy and Dale got. In spades. The Nuala who knew the overload that can overwhelm anyone with autism. That Nuala Gardner.
Bags, folders and family sorted, for this time at least, Jamie, Amy and I bundled into the car. My shoulder ached. My back throbbed. My eyes nipped. When did I last find time to get to a GP? The optician? Go to a spa? Hahaha! There wasn’t time in this life to allow myself health issues. Make no mistake, being the mum in a family with autism doesn’t need a fit woman. It needs a fully blown bionic one. Sooner or later, we all find out that not one of us is made that way. We find out that maybe, after all, we’re only human. It’s scary when all the systems crash.
I sat in the back seat of the car. In fact, I was in the back seat in so many other ways. My health remained fragile and I was still off sick. Consequently, of course, I was earning far less. There wasn’t a moment when that wasn’t an issue for me. Not one moment.
Jamie drove on, in silence, and it was a very uncomfortable one. At least, for now, we weren’t carping. I’d tried to keep that from the kids. No doubt so had he, but did we manage? No, I don’t think we did. As I say, all too human.
As Amy got out at the school gates, my husband said his first words of the journey: “You have a good day today.”
Who was he talking to? I thought. I thought aloud.
“Amy, of course!” he said.
There it was in a nutshell. How was Amy meant to know he was talking to her? Day after day of my starting every chat with “Amy” or “Dale” seemed to mean nothing to him. All that work, all that research – nothing! Did anything I say to him mean anything? Where was our shared territory, our consistency of approach? We were on two very different planets. Parents with divergent views and strategies are bad news for any child; parents like that with a child or children on the spectrum are unmitigated disasters. I flared!
“I thought she’d heard me!”
He didn’t get it. Didn’t get it. He didn’t get me, for that matter.
I wish I could say that Amy missed all this, but I can’t. I apologised, promising I would never let it happen again, knowing similar promises had been broken already. The strain was unbearable.
Later, Amy and I needed to talk this one through. We found time that afternoon. In the midst of our shared calm and my explanation, she interrupted. “Nuala, are you and Dad getting a divorce?”
I was devastated. It wasn’t the right time. Somehow, I reassured her that her dad and I were having problems. There was more: “I’m sad. You’re not a nurse, and Nuala no longer plays with me.”
My daughter was right. I barely got through each day. I was neglecting her, and most days she was left to play alone. Around this time, she became quite obsessed with her Nuala doll. She insisted I help change its clothes many times throughout the day and she slept with it every night. I realise now that in her own way Amy was taking care of me via that doll. The real Nuala wasn’t in her life as much as she needed.
Once, I was shaking with anxiety, and she noticed. “Nuala, would you like a massage to make you feel better?”
I used to massage her, but that day our roles were reversed. She gave me such a good massage that I fell asleep for a couple of hours and wakened feeling much better.
Today there was to be no massage, and certainly no sleep. We chatted more, and explored her worries – and mine. Talk over, Amy went upstairs and collected her horses, content, for a while anyway.
I was pleased that we’d managed this together. Alone in the kitchen, I needed a cup of tea. My own state wasn’t going to be fixed in a hurry. Lifting the kettle, I noticed, and not for the first time, the tremor in my hands. My right one was especially affected, to the point that I could barely write. To try to get around the problem, I used the same pens that Dale and Amy used, ones with broad plastic tripod grips. It was really frustrating, but it was insightful too. Making such a simple adjustment allowed me to write legibly again. I hoped that, in time, my acute nervous state would settle . . . whenever the truckload of pressure fell off me. I wasn’t sleeping or eating well and, certainly, I was depressed. I began to have panic attacks.
Some nights I lay awake and thought I was heading for a mental breakdown. Thank God for Dr Roddy Grose, my GP! That man, and my four-legged canine friend, saved me from self-destruction. Before my health crashed, I rarely saw my doctor, but suddenly, I was never away from him – ongoing sick lines, changes in medication, anti-depressants, sleeping pills, or Valium for panic attacks. Dr Grose always had time to listen, and he is the reason I survived those years of illness with no lasting mental trauma. I knew, for my health’s sake, that I was unable to continue to hold down the job I had loved for twelve years. There was so much at stake, so much that I still cannot bear to look at. Something had to give. But before I realised that and sought out Dr Grose’s life-saving help, I hit rock bottom.
Our financial situation was not good. Jamie couldn’t cope with me being off on long-term sick leave, and eventually the pressure I felt to get back to my nursing job was so bad that I tried to return to work but barely managed three night shifts I was so ill. To cope with this added burden, I did something as a nurse that I should have known better. I wasn’t sleeping or eating, and the panic attacks blighted me virtually on a daily basis now. To try and get some mental respite from everything, I started to swallow my prescribed medication like sweets to get through the day, while desperate for my mind to shut down, especially at night.
As the weeks passed and I popped pills at random, my mood swings changed drastically. I would become euphoric until I crashed into the deepest and darkest depression I have ever known. I was unaware of the severe side effects of overdosing until I ended up feeling acutely suicidal. I was toxic with the pills and emotionally empty. My mood was so low. Soon, I reached zero function.
It will haunt me forever, the image of me sitting, with my friend Lorraine by my side, with the risk of me being admitted to the local psychiatric unit looming over me. Thankfully, though, under Dr Grose’s care and with Jamie and Lorraine’s help, I didn’t need to be hospitalised. I came through the darkest part of my life and was determined to change things for the better, and for Amy and Dale’s sakes.
Now, I can see an ironic twist of fate. It took all this to give me the wake-up call I needed. I made a life-changing decision. For the first time in twenty-five years, I put my own health and future well-being first. I had to. How else could I continue to fight to ensure Amy
had the same life chances that Dale now enjoyed?
My friends saw the changes in me, and worried. Amy had already asked about divorce. She wasn’t the only one with that word in her head. Yet, where was my way out? Way back in the days when Dale’s autism had tested me to the limit, I relied on Jamie’s support. He had helped me through some dark times, but the constant arguing and strain of our relationship made this situation now unliveable. Deep down I knew the day would come when I would decide to get out. But how? And when? Would I ever have the physical and emotional strength to leave? Where would I stay? We needed a garden. My head was birling. Years of fighting for both my children had left very little over for me. Who was that woman in the mirror? Nuala?
Once again, Amy came to my rescue in the most unlikely way. Back to the Bed-a-thon! While she had settled better in her own single bed, which we had moved into the office that was next to our bedroom, the problem was still not sorted completely. As often as not, who ended up in our bed? No prizes for guessing! One morning, casually, she opined: “Nuala, I like your big bed. Mine is too skinny. I’m scared I’m going to fall out. I like your red room and wardrobes. Red makes me feel good and it helps me sleep good too!”
When I chose the red, glossy furniture for our bedroom, with wallpaper and curtains in matching tones, it never occurred that I was creating an Amy-perfect haven. I should have known – she liked red. But the complexity of autism can so cloud our judgements. And memories! Throughout Dale’s childhood, he slept in a double bed, allowing room for us to settle him and most of his toys, including his pedal bike!
That night, we let Amy sleep in our room. I slept in hers, and Jamie took the office. Safe with her Nuala doll, Amy slept soundly all night, and stayed put. It was the same every night thereafter, without the Melatonin. We only took a decade to solve the Bed-a-thon! Not only that, but a change in living arrangements was introduced to my children, in the kindest possible way. The first step towards the biggest change they would have to make.
With the sleeping arrangements sorted, on 7 December I asked Jamie for a divorce. He agreed, knowing it was best for all of us. We went through the motions of Christmas together. Christmas has never been the family time for us that we might have hoped. Plenty of families with autism will empathise with that. But December 2010 was easily the worst Christmas I had ever known, and it had nothing to do with autism. In fact, Amy’s excitement motivated me to get through it for Dale, as well as for the boys.
For the first time in my life, that festive season my weight fell off. I was miserable. It was all too easy to go without food. Yet something odd was happening when I caught sight of myself in the mirror. I knew years of comfort eating had taken their toll. It had been so long since I could remember being any size under 18. I had given up on myself, my appearance. Yet as I now checked my reflection in the mirror again, I couldn’t ignore this change that had come over me. The weight loss was actually working wonders. I even felt better! I might even begin to recognise that woman. Is that you, Nuala?
Something clicked! I never do anything by halves. In the weeks following, I spent a significant proportion of Sir Henry’s book royalties. It was time to reclaim something of the real Nuala. I needed to find someone who wasn’t always a wife or a mum or a campaigner for causes. A Nuala I’d almost forgotten. Me. There was much nurturing and cosseting to be done. I had a good twenty-five years to catch up on!
My accidental weight loss gained me entry to shops I’d scurried past for years. I loved those tailored, figure-hugging business suits . . . Well, hello, Nuala in the changing room mirror. You wear them well! Now I needed to ditch the flatties. I imagined Cinderella smiling at me when my feet fitted those foxy stilettos like the proverbial glove! Within weeks, my wardrobe doubled. Anyone seeing it would probably conclude that I was some sort of manager in a major organisation. Now at presentations and similar public speaking events, I looked and felt the part. My confidence soared with my new-found height! I treated myself to laser eye surgery and began again to recognise and love the Nuala I saw in the mirror.
Outside the shops, my old friend Jan nearly walked right past me. “My God! Nuala! What’s happened? I barely recognised you. You look fantastic – better than you did years ago!”
Ho hum! I explained that I was seeking a divorce, and why.
“Never mind! You’ll meet someone who appreciates you. You’re a great catch.”
Laughingly, I replied, “Oh yeah, all the men’ll be queuing up for a middle-aged bird with two massive daft dogs and a live-in interrogator!”
How we hooted! Still, Jan left me with something else. “Nuala, promise me you won’t become that downtrodden person ever again.”
I was sure on that one! “Don’t worry, Jan. She’s never coming back!”
On the way home, I had my ears pierced. Gorgeous earrings suddenly had my name all over them, and those nails I’d bitten to the quick for years? They were growing! I had them manicured the very next week and treated myself to all the colours of polish my newly sharp eyesight could take . . . and no, they weren’t going to sit unused in any cupboard! Jan wasn’t the only one to comment on the new me. All my friends complimented me, and it felt great, but there was one particular voice which was extra special, Amy’s. “Nuala, your nails are nice. Well done! You’re a very good girl.”
Thereafter, Amy and I would share “girly night” manicure sessions. After our pampering session, all four of us – me, the Nuala doll, Amy and the cuddly retriever toy she called Thomas – would end the evening dancing to the latest disco music until my breath ran out. Amy would insist I danced with “mini me” and she would partner the big cuddly golden retriever toy she called Thomas. Sometimes the real Thomas joined in too, unable to resist an opportunity for madness. Our particular favourite song was Alexis Jordan’s “Happiness”. I taught Amy some disco moves and she, in return, taught me some street dancing techniques she had been learning in an after-school class.
Happiness! As the song repeated the word regularly, I felt better than I had in years, and I knew that “Team Amynual”, as Amy now called us, would work together just fine. I couldn’t wait. Thanks to Henry’s gift, my health was improving, slowly.
I know Dale, and especially Amy, will never forget the terrible scenes they witnessed when I was at my lowest. Children bury hurt deep in their minds, but they never forget. Amy confirmed that for me. We were cuddling together, enjoying breakfast in her “new” bedroom, with Thomas and Henry beside us, mooching for crumbs. It was a new and pleasant routine for Team Amynual, and all seemed to be so easy and relaxed.
“Nuala, have you fallen out of love with Dad?”
I took a risk and went along with her calm, inquisitive mood. “Amy, thank you for asking such a good question.”
“You’re welcome, Nuala. What’s the answer?”
“Yes, darling, I have fallen out of love with your dad. It’s been for a long time now.”
“That’s all right, Nuala. That happens and people get divorced. Are you doing that?”
“Yes I am. And Amy, don’t you worry, because we have been practising living as Team Amynual with Thomas, your DATA dog, and it has been good. That is why I sleep in your bedroom upstairs and your dad sleeps in the office. When I find Team Amynual a new home, we will be all right.”
She agreed. I thought we had come to the end of that, for now at any rate. Wrong!
“Nuala, I like you better since you took off your mood ring. You are happy now, and your tone of voice is always nice now.”
“Amy, what do you mean? What mood ring?”
“I mean your mood wedding ring. You took it off at Christmas.”
I needed to brace myself. The Interrogator was on a roll.
“I like the new Nuala best. She’s nice and skinny, looks beautiful, and she has gorgeous lips.”
“Amy, that’s so kind of you to say that.”
There was no stopping her.
“The old Nuala had hair like a hedgehog, shouted and
was upset too much and was crying a lot. You have improved. Your hair’s lovely and the shouting and crying has stopped.”
What can I add to that?
That morning, we talked openly, at her level, about the future. I reminded her of some basic rules I’d recently taught her about how to maintain a good relationship with someone that you love. The first rule covered mutual respect: never knowingly hurting a loved one. I thought we’d covered everything. Wrong again!
“Nuala, we need to change the old Nuala doll to the new Nuala.”
“Amy, you are so right. We will do that today.”
So, with the help of some permanent felt-tipped markers, the old Nuala doll was upgraded, made-up. She gained a new wardrobe and some smashing dangly earrings. We were both ready to face the world again! Personally, the revamped doll put me in mind of Chuckie from the horror movie, but she hit the spot with Amy. “Nuala, I love the two new Nualas!”
I was relieved. Even so, my weird effigy did freak me out!
She was only ten and I was completely overwhelmed by her. Dale, by contrast around that age, couldn’t bear me changing my hairstyle or experimenting with the colours or types of clothes I wore. I had to wean him onto acceptance of any new looks I managed. However, in my old-life situation, it wasn’t often an issue!
Such was Amy’s relief that life was getting better that a couple of days later she emailed me from her new, state-of-the-art iPod: “Hello Nuala, do you like the cake I found for you?”
I scrolled down. I was stunned, but couldn’t stop laughing. Even for Amy this was a topper. She had surfed the net and sourced a picture of a divorce cake! It resembled a traditional wedding cake, with ornate icing and a bride, standing in the middle in all her glory. But the groom was missing. He was clinging to the edge of the cake, as if he was dangling from a cliff top! I thanked her. “Amy, I love my divorce cake! You made a great choice for me.”
Not many months later, I looked in that bathroom mirror again. I liked what I saw, and felt. My hands jangled with pretty bangles, but they weren’t shaking. As for my “mood ring”, I’d no idea where I’d put that, and that felt brilliant.
All Because of Henry Page 18