Colleen's "no frills" wedding & agoraphobia

Ten months ago, when Collette got married, Colleen and Jim suggested that they might get married this year in Malta. There was little further discussion about their wedding until a month ago. Then, out of the blue, they announced that they were going to get married in a month's time, somewhat closer to home – in Taunton.

That was a month ago. They got married today.

Their wedding plans caused much disappointment to many of the members of both families, because they decided to get married in Taunton registry office with just parents, their partners and two of their friends present. Other family members were told not to attend as Colleen and Jim just wanted a small wedding. At the groom's stag night, his brothers and best friend let it be known to me and my sons-in -law that they disagreed with the happy couple's choices.

In the evening, Colleen and Jim asked all their family members to go to a local pub for a carvery meal.

In choosing the venues for both the wedding and the evening get-together, Colleen totally disregarded Marie's agoraphobia. Carla and Collette had done the opposite – only booked their venues after ascertaining that Marie would be comfortable there. Colleen also paid scant regard to my feelings, since I had to attend without my wife. Because I wanted to make her day as enjoyable as possible, I didn't mention any of this to her – and I discouraged other concerned family members from doing so, too. (Jenna, who wed in Belfast, also got married in a venue which she knew was inaccessible to Marie, but she believed that Marie would probably not be able to cope with the journey.)

Just after midday, Colleen and Jim entered the registry office.

There was no photographer, so I took photographs. It is possible that Colleen and Jim hadn't wanted any photographs – they didn't say.

Colleen's mother, Sandra, also attended, accompanied by her partner. She was surprised to learn that only five of us had been invited to the ceremony.

She shed a few tears during the brief proceedings, as did the groom's mother.

When the ceremony ended, we all went to the pub across the road for a couple of drinks. Then we wnt back across for a couple of group pictures (the one below was taken by Sandra's partner).

It was only 1.30 and the evening meal was arranged for 6 pm. I went home and returned to Taunton a few hours later, accompanied by Jenna, her family and my two young children. The rest of Colleen's family made their own way there.

Just over 40 relatives were at the evening meal. The pub was large, quite comfortable, but lacked ambiance. The food was awful, but not wanting to upset the newly-marrieds, no-one complained. There were no speeches or any other formalities. Dress was casual – no fancy frocks or smart suits. Again, although not asked to do so, I took photos, so that Colleen andJim would have a pictorial record of events.

Colm arrived after the meal and stayed for a couple of drinks. He was in very good form and brightened up everyone's evening.

Some people left quite early, but Colleen's sisters and I and our respective families stayed till 9 pm (as late as we could stay with young children on a week night during the school term) leaving Colleen with some of Jim's family, none of whom had any children.

It had all been a very low key affair.

Expecting to have to pay for or contribute to up to six weddings (I don't expect Colm to wed), I decided some years ago that I would give each of my children a sum of money sufficient to cover the cost of a modest traditional wedding. Each recipient could choose how to use this money. They could add to it or keep part of it. Colleen and Jim decided to spend as little as possible on their wedding and save the rest. It may not have pleased everybody, but it was their choice.

Ultimately, Colleen's and Jim's happiness is the most important consideration, and they both looked happy on “their day”.

My Autistic Son - Part 4 - a short, unhealthy life predicted

If you want to read the preceding parts of this story, click on this link.

If you have already read them, you may be interested to learn that I have added a few photos.

“Your son may not reach maturity,” Professor Nevin told us. It was 1983 and Colm was 3 years old.

Professor Norman Nevin is Professor Emeritus, Queens University, Belfast and when I met him, he was one of the foremost specialists in genetic disorders in the world. Northern Ireland was an excellent location to study genetic disorders at that time since, due to decades of minimal immigration and thus a near-stagnant gene pool, it had one of the highest incidences of genetic disorder in the world.

For a couple of years after Colm had been discharged from hospital, he was subjected to extensive tests to find out the nature of the condition which continued to cause him to have an extraordinarily large liver and spleen. There were many blood tests and other unpleasant tests such as skin samples removed for skin cultures, bits of liver removed for liver biopsies and (worst of all) bone marrow removed for biopsy. The most likely explanation for his condition, I was informed, was an autosomal recessive (genetic) disorder. In particular, a storage disease was the current favourite.

What is a storage disease? I enquired. It's a condition where the body cannot process all the chemicals from the food it processes. These chemicals are stored somewhere in the body - possibly the skin, internal organs or in the bones. The effect of this, I was further informed, was that the part of the body doing the storage would swell or grow. If Colm was storing chemicals in the bones, for example, his skull would thicken to such an extent that it would crush his brain, eventually leading to death. Lovely!! That would be something to look forward to! If an organ stored the unprocessed chemical, it could swell to bursting point... "But we're learning more about storage diseases all the time," the doctor said, brightly.

Eventually we were invited to a meeting with Professor Nevin. After examining all the available data, he told us that Colm had glycogen storage disease – or at least, this was the most probable diagnosis. There was no treatment for this. Further tests would be carried out and Colm's progress would be closely monitored, but a significantly shortened lifespan and health problems were almost certain. He went on to explain that there was a 25% chance that any future children would also have it.

Not exactly what one would wish to hear.

Especially when it's your firstborn (as it was for Sandra).

This poor quality picture shows Colm with Sandra and half-sister Carla.

Colm was having problems in other departments. His speech development was very poor. When he spoke, his sentences were truncated and his words poorly pronounced. The motor muscles in his hands seemed less effective than they should have been. Actually, he was, to some degree, behind in almost every way. In his second year, Colm's slow progress had been blamed on the illnesses which had blighted the first 13 months of his life. Now in his third year, it had now become obvious that this excuse was no longer viable. We were told, in the terminology of the time, that Colm was mentally handicapped. A place at Segal House Nursery in Belfast – a Mencap service – was available. Would we like him to go there? We would. The only problem – there was no funding for transport to get Colm to the nursery. This was the first time that funding for Colm's care would be an issue. By this time, my business grown to be quite sizeable and I had several members of staff able to cover for me if I was absent. Thus I was able to drive Colm to Segal House (about 5 miles, but inaccessible by public transport) and bring him home again by simply delegating some of my activities to my staff.

My wife Sandra and I also noticed that Colm's interpersonal skills were virtually non-existant. He exhibited very little affection or any other emotion. He didn't smile. He needed much less sleep than normal for a 3 year old toddler. Additionally he excelled in some areas – for example his sense of direction was better than most adults!

I can give an excellent example of Colm's incredible sense of direction - a talent he still has. When Colm was approaching his 4^th birthday, we moved house. We were now 6 miles away from the nursery. We had to traverse the city by way of a myriad of side roads and the journey took about 20 minutes. On the 3^rd day after we had moved, I got tied up in work and couldn't collect Colm from nursery and delegated this task to Adam, a member of my staff who had helped out in this way before. Shortly after he had picked up Colm, he realised that he didn't know my new address or new home phone number. What was he to do? He pulled over to stop, but Colm got agitated and pointed to a road nearby. So, not knowing if it was the correct route or not, he decided to follow Colm's directions. It worked! After only 2 trips from the Nursery to home by a complicated pattern of roads, Colm knew the entire route!

What Sandra and I had noticed, but did not recognise, were some of the classic symptoms of autism. Unfortunately it would be another 12 YEARS before we were informed that we had an autistic son.

Had we known earlier, we and the health professionals could have helped Colm so much more efficiently. Sandra and I could have learned how to provide the best environment for our son while he was at home. It was to take a further 25 YEARS to provide proper care for Colm.

Of course, in 1984, Colm was only expected to live a short life, so why bother to correctly assess his mental health needs?

Now go to Part 5

Love

From a deep, dark slumber, I enter that semi-conscious state which is neither awake nor asleep.

I realise that there is an intruder in my bed ushering a chill into my comfortable close cocoon.

An arm gently encloses my neck. A body presses close. I feel a tumult of tiny tender kisses on my face and forehead. Subliminally I identify the intruder and respond by enveloping her in a fond embrace. Recognising an unfathomable depth of emotion, I express myself inadequately: "I love you, sweetheart."

"I love you too."

A tiny voice; simply spoken; unquestionable sincerity.

She relaxes, comfortable in my embrace. Soon her breathing becomes regular.

She is fast asleep.

Fully awake now, taking care not to awake her, I peer at the red digital display of the bedside clock. 4.20 a.m.

Slowly, so as not to disturb her, I remove her arm and I arise. Now upright, I look at her as the moon's metallic lustre bathes the room. The tousled hair, the unblemished, smooth skin and the cherubic face that only a three year old girl can possess. I cannot describe the depth of my love for her.

Gently, I lift her; she wraps herself around me. I take her to her bedroom. I lower her to her bed where she assumes the foetal position while I surround her with her Cinderella-decorated duck down duvet.

"I love you daddy."

Then she sleeps.

Back in bed, I wonder: how could anyone deliberately hurt such a little person?

Yet it happens.