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.
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.
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!
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