Laugh or You’ll Cry: My life as a mum with MS and a son with autism

My life as a mum with MS and a son with autism

Sue Askins

Copyright

HarperTrueLife

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First published by HarperTrueLife 2015

FIRST EDITION

Text © Sue Askins 2015

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be identified as the author of this work

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Dedication

For Julian, for all your help

Contents

Cover

Title Page

Copyright

Dedication

Chapter 1: A few hours of peace – I’ll type something on the computer

Chapter 2: The ‘Artful Couple’

Chapter 3: ‘Guess who’s coming to stay’

Chapter 4: Strange things dawning on me slowly

Chapter 5: New home

Chapter 6: New baby

Chapter 7: Maybe a smaller class will help

Chapter 8: Lack of imagination, social and communication skills? That will be autism then!

Chapter 9: Another school, a special school

Chapter 10: Do your legs hurt? That’ll be MS then!

Chapter 11: Lady of leisure

Chapter 12: Maybe I’ll hassle people and try to get better services for Josh

Chapter 13: Writing a letter might help

Chapter 14: Get off the floor and back in the chair

Chapter 15: Right place at the right time

Chapter 16: Negotiating the Christmas wrapping paper in my new wheelchair

Chapter 17: Trip to York – strapped to the front of a train

Chapter 18: To London, past the scary tree

Chapter 19: Highs and lows and highs

Chapter 20: ‘To the Palace, please’

Chapter 21: Rounding off

Why not try …

Why not try …

Why not try …

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1

A few hours of peace – I’ll type something on the computer

July 2001. Julian is taking the boys – Josh, 11; Harvey, 8 – to see Tomb Raider at the cinema.

‘Sorry,’ I mumble. ‘I’m not really interested in that.’

Amazingly, off they go, a boys’ outing (they’ll be picking up some tips for the PlayStation game, no doubt), leaving me at home alone for two whole hours, maybe even stretching to three if they stop for a burger on the way home. In which case, I might’ve written a whole page.

I’ve decided to try to tell a story – my story, our story. I don’t feel like a proper author. It’s a therapy, a hobby perhaps. I’m a bit nervous now. Shy. What do I type first? I trust you will bear with me as I tell a simplified version of the last few years; I am just a mum, not a professional writing a thesis.

Perhaps it’s time for a tea break. No, let’s crack on. But where do I start? Maybe by telling you who I am.

 I am 39.

 A hassled mum.

 Red haired (with a touch of grey).

 Family orientated.

 Forthright.

 Sparrow legs.

 Loyal.

 The opposite of lazy.

 Retired.

 Kind (hopefully).

 Artistic.

To help me remember, I’ve found my old diaries. They mention Josh a lot, not surprisingly, as he was my first baby. It’s interesting to reread some of the entries 20 years later, seeing possible underlying messages.

But I’ll go back even further to a ‘pre-children’ era, when autism was just a word I’d heard from Rain Man, and MS was something that happened to other people. I can deal with all those issues later.

I’ll see what evolves on the computer screen. In fact, I think I hear a car. Yes, they’re back. I’ve wasted those precious hours on waffling, two cups of tea, three trips to the loo, a quick nap. I can see this is going to be a long process.

I retired at 35 after being diagnosed with multiple sclerosis. I can hear you groan at this point. Who wants to read a story of doom and gloom? It’s not a morose tale, though, so please don’t be put off! I don’t feel sorry for myself. So as long as you understand that I wouldn’t usually bang on about my problems then I can begin without any worries.

Without MS, I doubt I would’ve had time to sit and write. I don’t feel it’s an important issue to talk about normally – after all, thousands of people have MS; and many have nastier conditions to live with – but I can’t deny its presence in my life.

It is a strange disease, which can appear and then disappear for many years. I was lucky, even though I suffered silently for a very long time. I didn’t know what was wrong with me, which left me free to carry on with my life, get married, have children and live normally in total ignorance, and I’m grateful. Whether Julian thinks along the same lines, I don’t know – only he could answer that – but I’d like to think it would’ve made no difference to our lives together. Who can say what they would or wouldn’t do, if we had the future mapped out beforehand?

We first met at art college when I was 16; he’s one year older than me. I vaguely remember this boy who was on my course, but so were 40 other people. Our paths never really crossed until two years later while studying for our Fine Art degrees. We started going out together in 1982, and have been a couple ever since.

2

The ‘Artful Couple’

In 1986, aged 24, having just finished my MA in London, I rented a studio in Ruthin, North Wales, with Julian. The slow way of country life appealed to us both and rents were vastly cheaper than in the capital. We just needed somewhere to live within easy reach of our art workshop.

We stumbled across an advert for a lodge, falling in love with it the first time we saw the place. I think the country setting, the Hansel-and-Gretel quality, will always have a special place in my memory. It was our first home together, where we enjoyed Josh’s first three years before we had any thoughts of autism or my illness.

That autumn we were married in Cheshire, in the same chapel as my parents and grandparents. Honeymoon over, we both loved opening our own studio and gallery, and as the years went by the studio became more established. We took our work ‘on sale or return’ to galleries around the country, and with contacts down in London bombed up and down the motorway on a regular basis. Alongside this I started to teach art and printmaking.

To prove what an exciting life we led around this time, when we got our first microwave we sat watching the baked potatoes cooking! It was such an invention, but, remaining nervous, I took heed of my mother’s advice: ‘Don’t get too close – might cook your kidneys!’

It was a happy time, living ‘the good life’. We picked veg and blackcurrants, and made wine in demijohns. Julian improved the house, happily gardening and digging, and building cold frames, all towards becoming more self-sufficient.

Late one November evening, there was a knock at the front door – which was extremely unusual as we lived in the middle of nowhere. The frightened young man, obviously with learning difficulties, had run away from a care home after an argument with a member of staff he thought was nasty. Poor lad, we did feel sorry for him. We invited him in, offered him a drink.

He was so nervous, cross-eyed; he couldn’t remember if he’d eaten. He told us his parents didn’t want to know him, so he’d been at the home for two years, learning how to cope with living independently. The care staff arrived within the hour. It made us feel how lucky we were, hearing such an unfortunate story, and it really upset Julian, who would have liked to help him more. Years later we were confronted with similar issues in our own family, but in 1987 it seemed so remote and no part of our lives.

June 1987. I wrote to Homes and Gardens magazine: ‘Any possibility of a feature article, and producing screen prints for your readers?’ A month later they rang to say yes. In December the Homes and Gardens photographer and journalist arrived, along with their 16 boxes of camera equipment. We borrowed a few items from friends to brighten up the house, and gave everywhere a good spring clean, as you would before being thoroughly scrutinised.

The grey rainy day made no difference as lights put outside the window recreated sunshine. It felt like a film set: four or five lights on tripods, cables everywhere. It was such an exciting day, it seemed strange going to sleep, thinking that less than six hours earlier, there’d been a camera crew taking photographs by our bed.

Months passed by; cash flow was very tight, as we’d had a lot of outlays producing our prints and it seemed an age before we got anything back for all our efforts. But it was a lovely surprise, before the magazine published up north, when we received two orders in the post. My friend Judith (living in London) rang and said, ‘Hi, Artful Couple!’ – which was what the magazine article had called us. How embarrassing!

I’m out shopping one day and notice my feet feeling strange. Sensations moving up to the back of my knees. What have I done? One minute I’m walking along, the next thing my legs hurt like toothache. Even the balls of my feet. Weird. I’m only 26!

Perhaps I’ve just been overdoing things. No need to panic. But by the evening I start getting pins and needles, like my body is half asleep. Stay at home a while, but I’m not used to sitting around. Want to be at the studio, working.

A few days later, I try wrapping pictures for a forthcoming show at the Royal Exchange, but can hardly stand. It’s rather pathetic. End up just sitting, watching, while Julian does everything. Feel sorry for him and he’s a bit fed up with me.

The doctor says I’ll be better in a week. Thinks it’s a virus, possible arthritis, and prescribes me Brufen – an anti-inflammatory. I’m so glad it’s nothing more serious. But the next day I can hardly straighten my legs. A bath might soothe them, but that idea’s useless – I can’t get my legs under the water. Decide to leave Julian in peace and go home to my parents. It is nice spending time with my mum and dad at home, Mum spoiling me. I’m not sure how good a house guest I am – apparently I’m allergic to Brufen and throw up all over her carpet! Sorry, Mum.

Return to Wales after ten days, feeling I can walk further, but by the end of July my hands, knuckles and arms have started to hurt. What a state! I can just about manage to go to work, but have to sit down. I even find washing my hair and taking a bath wipes my energy out. The doctor tries another medication to help with the pain, but I’m sick again. Worse than ever. That evening we hold a private viewing for the opening of our new studio. Julian has achieved miracles; it looks so professional. I’ve been no help, nothing but a burden.

By September, thank goodness, I feel pretty much back to normal. Like a fairy has waved her magic wand. The doctor still detects a definite weakness in my legs, but is not sending me for tests. I put the whole illness to the back of my mind.

In October, I start teaching printmaking on a degree course one day a week. A great job, but it’s a 90-minute drive away. Crossing the Welsh hills in a clapped-out car, through rain, sleet and snow, is certainly taxing. Feel like I’ve done a day’s work before I’ve even started.

3

‘Guess who’s coming to stay’

November 1988. Felt queasy. I was pregnant. You’re never too sure if it’ll happen straight away, but it did; aged 26, we thought it a pretty good time to start thinking about a family. I organised a surprise meal for Julian (who had absolutely no idea I’d got pregnant that quickly); after the food, I handed him a gift. He unwrapped the nappy pins and pink fluffy pig, and the card saying, ‘Guess who’s coming to stay July ’89.’ I was on the edge of my seat anticipating his reaction, but needn’t have worried. Although shocked, he was ecstatic.

Everyone was thrilled with our news. Mum said, ‘It’ll put a spring in Dad’s step and a twinkle in his eye.’ My pregnancy kicked in and I felt surprisingly well; Julian and I looked weekly in the baby book at the stages of babies’ growth, attended Mabel’s NCT classes and had all the attentiveness that time allows for first babies. We began to nest-build, making alterations at the lodge.

One evening while watching TV, what a shock! There was one of my pictures, All Set for Tea, on the set of a BBC sitcom. That was quite fun, but on the negative side interest rates were cripplingly high. I suppose the first thing you stop buying when times are tough is artwork!

At eight months pregnant, home alone one summer’s day, I heard a knock at my back door. I assumed it was my friend Stella, but instead it was the eccentric farmer who lived with his long-suffering wife on a smallholding, down a muddy track nearby.

Driving past our lodge on his old grey tractor, which he did numerous times a day, he’d wave, and if I was in the garden I’d wave back. They were quite a couple of characters, he and his wife. The tractor was their only form of transport. He’d take his wife shopping, with her clinging to the back of the tractor for dear life, wearing her oversized man’s coat tied together with baler twine.

Anyhow, on that particular June day, stood at my back door, he wanted to know if I’d like some new potatoes.

‘Yes, please,’ I said.

He was very hard to understand, having such a strong Welsh accent and more spaces in his mouth than teeth.

‘I hear you’re going to be a father! Do you want a boy or a girl?’ he shouted, with peculiar incorrect use of gender.

He started to feel my tummy. This all seemed friendly enough, but then he lifted my shirt to grab hold of my trousers and see how tight they were, like he’d never seen a pregnant woman before. He mentioned my belly button, pulling my trousers further for a better look.

I said, ‘Oh, yes, all normal, thank you very much,’ pulling away.

I tried to give him the benefit of the doubt and remain civil. But before I knew it, he’d lifted up my T-shirt and squeezed the end of my tit!

Why did I let him! God knows. It happened so fast. He was treating me like one of his cows. I tried not to be rude, but had had enough of these shenanigans. He must’ve realised I wasn’t going to be pawed any longer, and just marched back to his tractor.

Once he’d gone, I felt a real fool. When I relayed the story to Julian, he thought I should’ve slapped his hand or face. Looking back, I agree, but the farmer was offering potatoes, and was maybe not the sharpest knife in the drawer! After that experience I decided I definitely wasn’t going to wave to him any more, in case he thought I was encouraging him.

I didn’t know at the time, but he was notorious for this sort of thing and really needed stopping. The trouble is, when you’re pregnant, people feel at liberty to touch your bump, so I felt at a disadvantage.

A week later, getting up late having had little sleep (a combination of heartburn and the baby kicking most of the night), I decided to have a nice, relaxing bath. Luckily I locked the back door. Had the radio on, was enjoying soaking myself, watching the baby move in the water.

I heard marching on the gravel, followed by thumping on the back door. I’d been splashing around, so whoever was standing literally just two feet away knew exactly where I was. I lay as still as can be, my heart beating ten to the dozen, and the handle of the backdoor slowly creaked. Someone was trying to get in – not just pushing the handle once, but rattling it repeatedly.

Livid, I jumped from the bath (allowing for me being eight months pregnant), grabbed my dressing gown and, dripping wet, yanked open the back door ready to have a full-on confrontation with whoever was standing there.

I couldn’t believe my eyes – it was the farmer! Arm outstretched, offering me some more bloody potatoes.

‘Did I wake you?’ he asked.

‘No. I was in the bath. Catching cold now.’

‘Are you OK?’ he bellowed.

‘Yes, but I must go,’ I replied.

Leaning forward, he grabbed hold of my hand, clutching my dressing gown, saying he’d look after me!

Bugger that, I thought. No bloody way! I just slammed the door in his face, re-locking it and sliding the bolts.

I waited for the tractor to start up again, but reckoned he was on foot. Felt quite upset. He seemed to come when Julian was at work. Shut all the windows, rechecked the locks, got back in the cold bath and washed my hair.

We were such easy targets, living in a ground-floor lodge, but, as it was such hot weather, I liked opening the windows. From then on, I was locking everything. I decided that if he came round again, I’d be extremely rude. Eventually he’d get the idea. He never did call again; it’d done the trick. Quite unsettling, even so.

The rest of the long hot July passed by peacefully and the days dragged into August. My due date came and went, the midwife becoming a familiar face. Unfortunately reached 14 days overdue, so I was induced, even then enduring 17 hours of labour. Why do they call it labour? Mmmm. The doctor arrived, saying as he bustled into the room that he needed size 7 gloves and size 9 wellies – not sure why he needed the wellies, but that’s what he said! I smiled to myself. Anything that can make a woman laugh during labour is a miracle. Finally, baby Josh was delivered with the help of Simpson’s forceps, along with accompanying epidural.

I remember what seemed like this enormous baby was dumped, plop, on my belly. Amazed at this giant wriggling mass. Relieved it was over at last, tearful, but mainly exhausted from the ordeal and lack of sleep.

Two nurses tried to get me into a wheelchair – what a joke! Numb from the epidural, I just crumpled on the floor. I was placed on a trolley, then wheeled down the corridors, Josh wrapped safely in my arms. It felt like the most wonderful journey ever. They said he was perfect; both Julian and I agreed with moist eyes. Rolled into bed, thump, like a piece of lard. I couldn’t turn or move. Julian kissed me goodbye.

Tried to get some sleep, but hopeless in the noisy ward. Lights on, lights off, babies crying, trying to get some sensations back in my legs. Stared at Josh, his black hair, blue eyes; strained, trying to touch him, but couldn’t quite reach. I loved him so much already.

On the same day Josh was born, another lady had her baby. She was visited by the doctors, who pulled the curtains round her bed. The words ‘Down’s syndrome’ were causing a stir on the ward. Everyone felt great sympathy for the couple. Just made me even more grateful that Josh was so perfect.

4

Strange things dawning on me slowly

A week after coming home, I noticed a few strange things; I couldn’t feel the distinction between the cold floor tiles and the warmth of the carpet. Taking a bath, I might have noticed if the water had been boiling hot, but generally I couldn’t distinguish between warm or hot. I noted these things, but imagined they were all just the after-effects of my epidural. After all, I’d just endured a long birth, was breastfeeding round the clock and had a new baby to look after, so the last thing to be concerned about was funny feet. Could’ve been anything, but it was another sign, and quite common (apparently) for MS patients to be well during pregnancy, then afterwards display problems.

When Josh was five months old, I developed more unusual numb sensations, which doctors thought were due to a disc pressing on my spine, hence why both feet felt identically numb. They suggested not lifting Josh whenever possible. The numbness developed into pins and needles in my feet, as if I’d been walking in the snow. The doctors repeated the same tests and seemed slightly more concerned, sending me for blood tests and an x-ray, and suggested I see a physiotherapist. So I started weekly visits (a story in itself), which didn’t do much good, but hopefully no harm. By April things had improved again. These strange sensations appeared, then just went away. It was infuriating at the time, but once gone I forgot all about them, and didn’t link any of them together.

October 1990. Josh aged one. I was asked back to my old teaching job, so three days a week I started getting up at 6.45 a.m. for the long drive across Wales and over the border into England.

As for when I first noticed any differences between Josh and other babies, well, a few bells began not necessarily to ‘ring’ but to ‘jingle’ when he was seven months old. My friend’s little girl, who’s three weeks older, was moving and generally more advanced, but I put this mainly down to the difference in sexes.

On Josh’s first birthday, we took him to the zoo, believing all kids loved animals. Not the case. He seemed quite uninterested! When an elephant stood right in front of him, he looked away; same with the monkeys, and when they fed the sea lions he more or less ignored them. This really tried our patience, having made the effort; Josh showed more interest in the rubbish bin. It was very hard to comprehend. Even slightly ungrateful.

That winter he suffered constantly from bronchitis and ear infections. He had a really bad reaction to the MMR injection – I’d never seen him cry with such utter despair – and seemed to slip through the net with his health checks; his 18-month test was late. His delayed speech was just put down to all his infections.

At Josh’s two-year test, a different doctor could see no problems with his hearing; he looked attentive enough, although he had little speech. So I was to bring him back in eight weeks. Again, I didn’t feel worried.