Tuesday, 30 December 2008

My Autistic Son – part 1 – The Difficult Child

On a cold, wet, Belfast morning in spring, Sandra had a sharp, severe abdominal pain. She knew instinctively that it was the onset of labour. It was the moment she had been waiting for, all these months. There was no panic – she had had the text-book pregnancy. Her husband, Robert, was at work, but waiting for THE CALL to come and take her to the hospital. Less than an hour later she was in the delivery suite of the local maternity hospital.

It was 1980 and men-waiting-to-be-fathers were relegated to the waiting room. It was draughty, not very warm, filled with cigarette smoke and the grey, uncomfortable, plastic chairs were arranged in rows like a small theatre. The d├ęcor was typical of the late 20th century utilitarian style with sickly pastel green gloss walls enhanced by fluorescent strip lighting encased in yellowing plastic diffusers. By way of diversion, the management had thoughtfully provided some dog-eared 1978 ladies' journals and a few grubby vintage home decoration magazines. On the walls were leaflet dispensers with helpful advice on contraception and where to go for treatment for sexually transmitted infections. Apart from a background noise of a busy hospital, the only sounds came from the public address system and the occasional occupant of the waiting room saying to a neighbour that if anyone was looking for him, he had just gone to the toilet/to get a drink/to buy fags and he would be back in a couple of moments; or a nurse would appear and ask “Is Mr ---- here? Oh, there you are. Congratulations! You have a lovely little baby boy/girl. You can come and see your wife now.” About 12 hours later, Robert had read all the available magazines, irrespective of their content and was having a fun time learning about the symptoms of genital herpes. He was relaxed. Although this was his wife's first child, it would be his second. A nurse appeared and called his name. No cheery “Congratulations!” for him – just a short message; “Your wife won't be giving birth for quite a while. Why don't you go home and give us a ring in the morning to see if there's any progress?” In the rush, Robert had forgotten to bring money with him to the hospital, so the prospect of a warm drink and a decent meal was very attractive indeed. He left without delay.

Next morning there was no news so Robert went to work. It wasn't until the mid-afternoon of the following day that he received a phone call. It was the “Congratulations! Speech” but had an addendum. Robert was, indeed, the proud father of a baby boy, but he was a “difficult child”. He had been a sleepy baby who didn't cry immediately after birth; the birth had been difficult and eventually a Caesarean section procedure had been carried out. His wife was recovering from her ordeal and his son was in the intensive care unit of the maternity unit. Robert would be contacted when it was possible to see either or both of them. There was no point in coming to the hospital just yet, he was informed.

The next call came the following morning. Robert was told that, all things considered, Sandra was doing fine; but having endured 48 hours' labour and the loss of a lot of blood, it would be another day or two before he could see her. He could see his son, but he had been removed to The Royal Belfast Hospital for Sick Children. It was suggested that he went there as soon as possible. Apparently his son had volvulus, a twisted gut. Robert left for the hospital immediately.

At the hospital, he was met in the corridor by the surgeon, complete with green theatre outfit and wellington boots, who was just about to operate on his son. The surgeon was upbeat. The operation was uncomplicated and 100% success was the anticipated outcome. Robert would be able to see his son in an hour or two. Longer term, no further problems were expected. The only consequence of the operation would be that Robert's son would have a scar on his abdomen.

Indeed, just over two hours later, Robert was summoned to the neonatal intensive care unit, where his son was in an incubator. Robert's first sighting of his son revealed a very sick looking baby with what appeared to be a huge incision right across his abdomen and a distended stomach, surrounded by wires and monitors. (Similar to the photo.) The Ward Nurse explained to Robert that his son had been poisoning himself with the waste that his twisted gut had prevented from exiting his body. He would look better in a couple of days. The operation had been a complete success.

For the next month, Robert spent nearly all of his free time at the children's hospital, where, after a couple of days, he was able to nurse his son (although still attached to a mutitude of wires), change and feed him. The emotion Robert felt welling up inside him for this helpless infant was so intense that it was almost torturous. When he wasn't at the children's hospital, he was at the maternity unit where, for two weeks, his wife Sandra stayed to recuperate after having her “difficult baby”. After leaving the maternity unit, Sandra accompanied Robert to the children's hospital. It was the first time that she had seen her baby – her firstborn.

She accompanied Robert several times subsequently until at last, the baby was discharged with a clean bill of health. The family home, eerily quiet since Sandra had left to give birth, was now a busy, happy place where the smell of baby formula mixed with the smell of wet terry nappies and the gurgles and occasional complaints of the new arrival.

Now read part 2.

Monday, 29 December 2008


This has nothing to do with anything I normally write about. It was inspired by a comment left on Steph's blog by Sarah. The subject of UFO's was raised. So here goes...

On Xmas eve I went to my daughter Colleen's house in Taunton, where she , Carla & Collette were hosting a birthday party for me (yes, my birthday is on Christmas Eve). It had been a beautiful day, and the evening was bright and clear with lots of stars and no moon.

At about 8 o'clock, my son-in-law, smoking a cigarette outside in the garden, called everyone outside to see the strange lights in the sky. We all piled out to see six (I think), fairly large, bright lights in the sky, all the same size, travelling in formation. Like a diamond with a tail. One by one they peeled off the formation, dimmed and slowly disappeared. My kids were outside, too, and we told them that it was Santa and his sleigh. When the lights had nearly all disappeared, we went inside again to continue our revelries.

It's only NOW that I am wondering what those lights were.

Ufo's? Surely not...

Saturday, 27 December 2008

Ghosts - more manefestations?

Maureen was nervous. The anniversary of the ghost's appearance was imminent. Would she reappear?

Close to the time that the ghost had appeared the previous year, she and her daughters Kim & Karen took up station on the passageway of the last sighting. Time moved slowly. Was the house more quiet than usual? Was that a noticeable drop in temperature?

The time of the anniversary came & went but everyone was disappointed that the ghost hadn't reappeared. More normal Christmas celebrations resumed and the ghost was forgotten.

Around midnight, Karen settled in to bed, tired, overfed but content and happy. She was in that semi-conscious world between being awake and asleep, when she was rudely brought back to full consciousness by loud knocking caming from the ceiling above her. After a couple of minutes, the noises moved to the wall behind her bed and then down the wall, diminishing in volume during their descent until all was quiet. After a few moments , Karen's battle with exhaustion was lost and she went into a deep sleep.

Next day, Marie & I, accompanied by our children, arrived at her family's house. Dinner followed soon afterwards. During dinner, the conversation moved to last year's apparition. Maureen told us about the non-event of the ghost's anniversary appearance. This apparently jogged Karen's memory and she relayed her previous night's noisy experiences. Maureen then told us that she, too, had heard noises which, based on Karen's description, were identical to those which Karen had heard.

I asked both Maureen and Karen to tell me which walls were involved with these strange noises. With Karen, it was a cavity wall – thus leaving open explanations for the noises such as central heating pipes expanding /contracting (although Karen said that she was used to those noises and these were much different) or perhaps mice or something similar. But Maureen's bedroom doesn't have any cavity walls...

I'm not offering any suggestions about how these noises occurred, normal or paranormal. I'm just relaying the events and the reader can draw their own conclusions.

I thought that these revelations might increase Marie's anxiety while in her parents' hotel-sized house, but they had no effect. We stayed there for 2 days, and Marie's school satchel sized handbag never left her shoulder during the whole time. A sure sign of anxiety. Despite this she and everyone else there had a really great time.

Saturday, 20 December 2008

The special needs woman and the autistic man

This is a picture of Audrey. She is cheerful, kind, honest, loyal and polite. She has mild learning difficulties and epilepsy. She is one of the 30%+ whose epilepsy cannot be totally controlled by medication, and has a fit once a month on average. The fits come with little or no warning and vary in intensity. This means that Audrey is unemployable. At least, that's what everyone believed - everyone, that is, except Audrey. She successfully applied for a course in customer service aimed at adults with learning difficuties. Some months later, one of the course leaders approached me, in my capacity as an employer, about letting Audrey get some work experience as part of her course. Audrey's mother was okay about her coming to my premises because she knew that I had an epileptic son (although Colm rarely fits - the medication works for him). I agreed to give it a try, and the end result was that in 2001, Audrey became one of my employees. She still is.

It turned out that my older son, Colm, knew Audrey. They had both attended a local club for disabled adults when Colm lived at home with me. Soon we found out that Audrey had romantic feelings for Colm. Unfortunately, Colm initially didn't fancy Audrey; but over the course of time (and aided by the gift of a giant-size Mars bar every time Audrey met him), he has warmed to the idea. Now he calls her "my girlfriend" and occasionally asks about her. Still, it was a surprise when he asked to see her - to spend an evening with her.

Colm & Audrey have had a few shared evenings before. They have been shopping, gone bowling and dined at Pizza Hut. Always accompanied by me. H
owever, Colm has always been uncomforable when Audrey invaded his personal space or attempted an embrace. But their last "date" was different.

After Colm had asked to go out with Audrey for a few weeks (the delay is to give him time to change his mind), I organised an evening at Asda (a supermarket chain owned by Walmart, US readers). The decrease in Marie's monophobia means that I can get to see Colm more often. Audrey wanted a new game for her Nintendo DS which Marie & I had bought her a couple of years ago. Best gift ever! She loves it! Colm, whose current games console is the Nintendo Wii, wanted to check out the latest game releases, so Asda seemed like a good venue for both of them. Well, we had only just arrived at the computer games department when Colm told me to go and do some grocery shopping. He would look after Audrey, he told me. Colm is familiar with the store, and after making sure that he knew what to do if Audrey had a fit, I left them to be on their own for the first time. Awwwww.

I suppose they were on their own for about 20 minutes, and then they looked me up in the grocery department. Audrey had her arm intertwined with Colm's - and he appeared to be fine with it. Next we went to McDonald's, at Colm & Audrey's request. Here, for the first time, Colm didn't push Audrey away when she put her arm around him. Indeed, he seemed to be almost enjoying it. Later, he even let Audrey give him a peck on the cheek before he went into his house. Both of them had had a thoroughly enjoyable evening.

OK, so they aren't exactly sharing passionate nights together, but these are changed times. I had always assumed that Colm would never experience romantic love, but now, who knows?

Wednesday, 17 December 2008

Pre-Christmas rush

It's been a very, very busy time, this pre-Christmas period. I expect it is for most families-with-small-children in the western world. In the past 10 days, I have been to a Guides'/Brownies' Christingle service, Joseph's school's Christmas nativity play, Joseph's school's Christmas carols service, our town Christmas concert with the combined town brass bands (we have 2 brass bands in this tiny town) and Joseph's school choir, Orla's pre-school group's nativity play, Orla's pre-school group's Christmas party (featuring Father Christmas), the town's Christmas shopping festival with a seasonal performance by a group of children from Joseph's school (including Joseph)– and dress rehearsals for some of the aforementioned. Pre-Christmas events are nearly over, with only the Scouts'/Cubs' Christingle service this evening and Joseph's school party on Friday afternoon.

This is also the busiest period for my business.

It was a little unfortunate, therefore, that Marie had a “bad” spell at this time.

Despite all of the above, I still found a little time to go rock climbing with Joseph.

I had my nephew to visit. Orla likes him!

I walked Blaze and rescued him from Orla!

Marie's bad spell wasn't a major one. She was able to dress Orla as an angel for her nativity play.

She made a Christmas cake, and let Orla help...

However it was my mother-in-law who rescued me from almost certain burnout and terminal domestic chaos! Many, many thanks to her! She went back home again last night after spending 5 days with us. As well as rescuing me, she also helped to cheer up Marie, who appears to be back to her normal self. By the end of this weekend, my busiest business period will have ended and although still very busy, will be gradually be returning to normal. I'll be able to relax a little!

Finally, here is a short video clip of my precocious 3 year old with her big brother. It ends with her picking her nose! Please forgive the quality of the clip.

Sunday, 7 December 2008

The golden retriever, the children and the beach

Shhhh! Don't tell Marie, but I'm getting as much enjoyment from our puppy as she is. Maybe more, in fact. The children are enjoying having him, too.

Blaze, our 5 month old Golden Retriever puppy, has been with us for less than 2 weeks, but he's already housetrained, sits on demand, fetches (indoors only) and only chases the cats occasionally. He's got used to his new environment and his self confidence has grown. Both cats have dismissed him as a threat to their safety and wander around our home as if he's not there. If Orla would stop pestering him some of the time, everything would be perfect.

What I most enjoy about having a dog around the place again is walking him. I had forgotten how enjoyable that could be. I live in a particularly beautiful area. My little town is surrounded by gentle hills, each of which offers panoramas of both countryside and the sea. We have open moors and dense woods right beside us. When, some days, it is misty, the countryside takes on a mantle of mystery. When it is windy, the coast with its crashing waves and sea-spray is the place to go. A walk this close to Nature never fails to lift my spirit. I've tried to pass this fact on to Marie, but she simply cannot conceive going for even the simplest walk. She gets to see a lot of scenery while we are out driving, of course, but much of the countryside and the vast majority of the coast is inaccessible by car.

It is an interesting fact, unknown to the majority of the many tourists who visit us, that we have coastal erosion all around us. The headlands on either side of our town with their cliffs between 20 and 40 metres high are disappearing into the sea at a rate of about 1m per year. As they collapse, fossils become exposed. Ammonites predominate. And when one of these becomes exposed, it is the first time it's seen light for 400 million years! We regularly get busloads of university students here looking for them. I try to imagine what the coast would have been like when my house was built about 400 years ago. The headlands would have stretched out into the sea about 400m further than today. That's the length of 4 football fields! A nearby town lost an entire row of houses complete with all their gardens the sea side of the road. If you were to walk there now, you wouldn't find any evidence that they had ever existed, but you might notice the high wall subsequently built there to defend the houses on the land side of the road from suffering the same fate.

Back to the present day - and the children, the dog and I could be found today at a nearby beach enjoying the calm and relatively mild weather and beautiful sunshine. (Apparently some parts of England are suffering from freezing weather, snow and the like. The weather is kinder to us here.) Blaze was dashing around in and out of the shallow sea water and digging pointlessly in the wet sand while the children were having a ball getting thoroughly soaked (see short video). Fortunately I had taken the precaution of bringing towels and blankets. Life can be very good here. We are all so lucky.

Marie continues to take the dog to the grassy area 20m from our home (in daylight only) but hasn't progressed beyond that. However, she is currently victim to a stomach bug and is unsurprisingly disinclined to be adventurous.

Wednesday, 3 December 2008

A visitor from Down Under

Marie spends so much of her time on her laptop that the kids think it's an appendage. She uses Facebook, MSN Messenger and the No More Panic chat room – usually simultaneously. She chats with many, many people from many different countries. One of her chat buddies and fellow anxiety sufferer who has been chatting with her for over a year is a New Zealander called Tracy. One day Tracy asked Marie if it would be ok to visit her while she was on a trip to the UK. Marie immediately said Yes.
You never know if you are going to like somebody until you actually meet them. In the flesh. No amount of emails or chat room conversations can totally prepare you. Thus it was with trepidation as well as excitement that we went to meet Tracy at the local railway station. It was like greeting an old friend from the start. Even the children took to her straight away. Tracy stayed for several enjoyable days and it was with regret that we drove her back to the railway station at the end of her stay.
Marie has several chat room/MSN buddies who live within 50 miles from us, but have never suggested visiting. Strange, therefore, that someone from the other side of the world should visit, isn't it?
Strange, but nice.