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

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.

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.

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.

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!