Sue Askins - 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

HarperTrueLife

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First published by HarperTrueLife 2015

FIRST EDITION

Text © Sue Askins 2015

Cover photo © Shutterstock 2015

Cover layout © HarperCollins Publishers Ltd 2015

A catalogue record of this book is available from the British Library

Sue Askins asserts the moral right to

be identified as the author of this work

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Ebook Edition © February 2015 ISBN: 9780008100155

Version 2015-01-30

Digital eFirst: Automatically produced by Atomik ePublisher from Easypress.

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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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.

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.