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

But he had started presenting a few phobias. For instance, he was very frightened in car washes, even being near a car wash. Visiting another parent’s house, he wanted a wee, but wouldn’t go in their bathroom. It was the indoor plants; the spikier the leaves, the worse the fear. Even little spider plants caused him anxiety. I had no comprehension of why he was upset. These things just made life harder for me. I wasn’t given a handbook on how to behave with an undiagnosed autistic son.

He was still suffering with his ear infections. We couldn’t let him continue to suffer month after month, so he had an operation for grommets and his adenoids were removed.

5

New home

Julian’s mum suggested being enumerators for the 1991 census. She was an electoral registrar and said it paid well and was quite easy, so we both signed up. The difference, we realised later (too late), was that she lived in a built-up neighbourhood, where your area may be a couple of streets, but we lived in the back of beyond and therefore had large chunks of countryside to cover!

Time-wise there was no comparison. A rural area took days and days to complete, with greater distances to travel, and forests, streams, fields and unmade roads to negotiate. But every cloud has a silver lining, and perhaps there was a good reason why we took on this job, as we found out later.

The weather couldn’t have been worse, as it always seemed to be pouring with rain. There were funny farmyards with not-so-funny farm dogs tearing at the car tyres, and just as hostile geese. We were in and out of the car, up and down the same road, trying to make head or tail of the maps, getting frightened to death by Alsatian dogs that hid behind walls, ready to pounce. Had to have a new tyre replaced on the car (from bouncing along farm tracks), then a week later the exhaust pipe dropped off. When we were delivering forms one Sunday, a lady confronted me at her door, complaining that I was disturbing her and working on the Sabbath! I slunk back the following day.

But Fate had dealt us a good turn. We’d visited many villages and hamlets during this census. One day, coming across a quaint place with an ancient church, almshouses and a pub, we both commented on how it would be an idyllic place to live. A few months later, we noticed in the paper a house in this village coming up for auction. We bid for it, and so become owners of our first home.

On a negative note, and making us even keener to move, we were burgled twice at our little lodge within a three-month period. Both times I’d only popped out for a while, which was pretty scary. The second time they smashed their way in over the bath, taking my grandmother clock and other irreplaceable heirlooms. My dad made me a replacement, using the mechanism from a clock he was given for his 18th birthday (in 1938). Although I miss the original, this one is just as special, if not more so, made especially for me.

On top of the burglaries, I was worried over a recall about Josh’s talking, or lack of it. But the doctor said that he was better, there was no panic, and to come back in three months. Around this time I discovered I was pregnant, and struggled on over the next few months, feeling queasy, while Julian completed a Norwegian printing order. He bought some new printing equipment, and worked every night till 2 a.m., printing, cleaning, signing and numbering the editions, but got the prints finished on time.

The weeks passed by, bills mounted up and, worryingly, there was no money in sight from Norway. In April, my teaching job was advertised due to new contracts, so I had to reapply for it. I received an interview, on my due date! So I rang, informing the college I might not be able to attend on that day, as I might be in hospital having a baby, or having just had one. It wasn’t as though the college was ten minutes down the road; it was an hour and a half away. The assistant on the other end of the phone kindly informed me that it was my own fault. I shouldn’t be pregnant. Rather upsetting!

I made a few phone calls, eventually having to go to the principal. Luckily he changed the date to the beginning of September, a month after my due date. None of this did me any favours with my immediate section leader, as I went over her head and made her look very foolish. She never forgave me.

To top it all the Norwegian publishing company went bust! Which, ironically, later led to a new long-running contract for Julian with a large art publisher in London, who’d also suffered a loss from the firm. However, I don’t think we felt very cheery at the time, not getting any recompense for all that hard work. We lost a lot of money.

It was a troubling few months. But among all this turmoil, in May we moved into our new cottage, which we’d lovingly restored over the previous year. The church clock opposite, chiming every 15 minutes, kept us both awake for the first few nights. But it was a super home.

6

New baby

August 1992. Our new baby boy arrived in two hours, a slightly smaller version of Josh: dark eyes, and with beautiful long eyelashes. He was alert from the first moment, feeding straight away, no messing around. I felt blessed with two wonderful children.

Harvey was four weeks old when I drove the 90-minute journey for my interview, leaving him with relatives close by so I could rush off and breastfeed him at lunchtime. I had mastitis, was feeling tired, suffering with a headache (I’d had it for days), and the interview panel were sat in front of a dazzling window, so I could hardly see; it hurt my eyes with the glare behind them.

After all that, I didn’t get the job. I’m sure they hadn’t appreciated me ‘altering’ their interview schedule by a month, and perhaps thought employing someone without babies and sore breasts was a safer option. How deflating – all that effort for nothing. Meanwhile, my headache developed into optic neuritis, leaving me with blurred vision for seven weeks.

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