Wednesday, 25 February 2009

Cerebral palsy, death and fostering

Ivan, the son of David Cameron - possibly the UK's next Prime Minister - died this morning.

This sad story reminds me of Ashley.

When a 15 year old Northern Ireland girl finds out that she is pregnant, it is rarely a cause for celebration. When that girl is the oldest of 4 children living with their parents in a small, publicly-owned, terraced house in a run-down housing estate in an area of low incomes and high unemployment, it is even less a joyful occasion. Abortion was not a feasible option for her because, at that time, abortion for any reason, except for the risk that the mother might die if the pregnancy continued, was illegal. Those who could afford to, travelled to England and paid at least £450 (a lot of money then) to an abortion clinic. Although the baby was not wanted, neither this girl nor her family could afford an abortion.

Ashley was born into this family in 1990. He wasn't well, so adoption was out of the question until a full diagnosis of his problems was made, and it was unlikely even after that. In due course Ashley's mother learned that he had cerebral palsy of the spastic quadriplegia type. He was severely disabled.

Ashley's teenage mother was still at school, so could not be a full-time parent. The baby's teenage father was totally uninterested and refused to have anything to do with him. Ashley's grandparents tried to cope, but with 4 other children of their own, found it very difficult. In addition, the already overcrowded house was clearly unsuitable for this unwelcome addition, and there was no suitable alternative public housing available. The local Social Services department, with the unmitigated approval of his mother and her family, sought foster care for Ashley.

My wife (not Marie - I hadn't met her yet) and I were approved foster parents at that time and had had many successful placements. We also had a “handicapped” son (the official term for Colm, then 10 years old), which made us experienced, in the eyes of the Social Services department, in caring for “handicapped” children and babies. Ashley fell into this all-encompassing umbrella term - “handicapped” - and when he was just over 9 months old, he came to stay with us.

When Ashley arrived, he couldn't sit, feed himself – even hold a feeding bottle - or do anything more than a new born baby. He obviously had severe learning difficulties (which Social Services had neglected to mention prior to placing him with us) as well as his physical problems. He was, however, alert and paying attention to what was going on around him. He could eat mashed up ordinary food. He mostly slept through the night, so he only needed 16 hours-a-day care!

Ashley's family had unlimited access to him, but after a couple of visits settled for occasional phone calls to see how he was doing.

As time went on, Ashley could be seen to be progressing. Although he required full-time care, his infrequent smiles and occasional happy vocalisations made everything worthwhile. I don't know if I was fooling myself at that time or not, but it seemed to me that Ashley was forming an attachment to me. I was most certainly becoming attached to him. I would nurse him in my arms almost every evening until my bedtime, which fortunately coincided with Ashley's bedtime. In the mornings, while my wife was getting our 3 children fed and ready for school etc., I was feeding, changing, bathing, nursing Ashley.

He celebrated his 1st birthday with us. He seemed as happy that day as we had ever seen him. At 11 pm, just before going to bed, he sat on our fireside rug, totally unaided, for a few minutes. I cannot express how happy that made us! Real progress!

-Robert! ROBERT!

My wife rushed into our bedroom, screaming in a panic.

-I can't wake Ashley up!”

I rushed into the next room to his cot. He was lying on his back, relaxed. He looked asleep and had good colouring. Nothing much wrong here...

RELAXED?? Ashley was never relaxed. Alarm bells began to ring. I lifted him. He was floppy. He was warm. He wasn't breathing. He was dead. No! He wasn't dead! Not yet! He was too warm to be dead. I placed him on the nearby bed. Ring for an ambulance! I barked to my wife, and I started to give Ashley artificial resuscitation.

I continued with artificial resuscitation for...oh, I don't know how seemed like a very long time, but it was probably only 10-15 minutes. As I forced air into Ashley's tiny lungs, I heard the fluid collecting there gurgle. It was not a pleasant sound. He was getting cooler, paler, more like a tiny cadaver. There was no breathing, no heartbeat. He was, finally, dead.

This scene still brings tears to my eyes. It's doing that now...

The paramedics arrived about 15 minutes afterwards. They confirmed what I already knew. They had to take him to the hospital to have a doctor check him – would I like to accompany them? In my dream-like trance I nodded affirmatively.

In the ambulance, during the 25 minute journey to the hospital, I was interrogated by an unfriendly paramedic. This was not what I was expecting.

-Who found him?

-My wife.

-Did you give him artificial resuscitation?


-Didn't your wife do that when she found him?

-No, she shouted for me.

-Why didn't she do it?

-I don't think she knows what to do.

-Who taught you to do that?

-The Scouts, when I was a boy scout.

-You weren't doing it when we arrived!

-No, Ashley was definitely dead by then.

-How do you know that – you a fuckin' doctor or somethin'? He was still fuckin' warm! You should've waited for us to tell you he was dead. We might have saved him. You should've kept up artificial respiration until we arrived. You might've fuckin' killed him!

There wasn't much scope for pleasant conversation after that...

At the hospital, the doctor was very sympathetic. He gave me all the time I needed and answered all my questions patiently. It was a typical cot death, he told me. No, there wasn't anything more I could have done. He had almost certainly been dead a couple of hours before my wife had found him. It was possible that Ashley had overheated in his cot and due to his physical problems he couldn't move to get cooler. That's why his body would have been warm, even quite a while after he had died.

The police visited next day – a man and a woman. They were apologetic. They had to do this. It was protocol. There was no accusation of anything being made. They just needed details for their records. They were very considerate in their questioning.

Ashley's funeral was arranged by his family and they generously invited my wife and me to attend the church service and interment of his remains. I attended the short, sad service. My wife, who had not become attached to Ashley, didn't want to go. Not many family members attended. The tiny coffin, covered in a cream fabric with silver decoration, was lowered into the ground at the edge of the small church cemetery. At the graveside, Ashley's grandfather spoke to me. I was somewhat apprehensive about this, but prepared for it. Would his family think that my wife and I had been negligent somehow?

It was for the best, you know,” he confided to me. “What quality of life would the poor mite have had? His mum is relieved, now that it's all over. Not that she wasn't sad, too. But she had never bonded properly with him...”

I visited the cemetery on Ashley's 2nd birthday. There was no marking on the grave, no stone, no flowers, nothing. The grave was totally covered in weeds and indistinguishable from the surroundings. A visitor to the cemetery would not have known that there was a grave there.

It was as if Ashley had never lived.

Sunday, 22 February 2009

Agoraphobia - a small, temporary? improvement...

So Marie had her first proper hypnotherapy session with her latest therapist on Wednesday evening. It was her first "proper" session because the first time she saw him was a getting-to-know-you session, although he subsequently emailed her an mp3 to which Marie has been listening daily ever since.

Almost every time, after she sees a new therapist, Marie has a spell where her agoraphobia lessens. This spell is all too temporary. Marie is aware of this and discussed it with her latest therapist. He claimed that this showed that previous therapists had been at least partly successful, and that if she had continued with their instructions/advice, she would have noticed a more enduring improvement. An interesting perspective and one which made sense to Marie. She has decided to persist with this therapist's therapy for the long term - at least a few months.

The anticipated improvement in Marie's agoraphobia after her 1st session with her new therapist was realised. On Friday afternoon she drove to the shop across the street and back again. In the evening, we all went to Pinocchio's Italian restaurant for dinner.

On Saturday afternoon, we went to Weymouth to visit Marie's parents. For the first time in ages, she felt able to spend the night in her parents' hotel-sized home.

Then today (Sunday), while her parents entertained our children in Weymouth, Marie and I went to the close-by, picturesque village of Abbotsbury. We took Blaze with us. We had an excellent, freshly-prepared, home-made lunch. Later, we made the most of the lovely, spring-like, sunny weather by going to Chesil beach. Marie didn't venture far away from the car, of course, but Blaze had lots of fun. However, the outings of the entire weekend could not have happened a week earlier.

Now we shall see if the improvement is as temporary as previously. I am neither optimistic nor pessimistic about it. But I am hopeful.

Friday, 20 February 2009

Naked bodies - a rant

A couple of months ago, a new sign appeared on the wall of the communal changing room at our swimming pool .


The showers are not in cubicles - they are all in a row. Naked bathers cannot hide.

At our pool, there has always been a universally known but unwritten rule that bathers who changed their clothes without protecting their modesty and showered naked would be prepubescent. At the first sighting of a pubic hair a towel would be employed to hide one's genitals and naked showering would cease.

The last time I took Joseph (7) and Orla (3) to the pool, a mother was helping her 2 or 3 year old son to change out of his swimsuit while simultaneously holding a bath towel around him and preventing him from looking at some 3 or 4 year old boys and girls scampering around naked and without inhibitions.

Why that boy got towel round him?” asked Orla embarrassingly loudly, removing her pants in full view of everyone.

To stop anyone seeing his willy,” giggled Joseph, also stripping with abandon.

The mother gave me a really dirty look. I was obviously, in her eyes, unfit to be a parent.

Later, swimming pool session over, Orla and Joseph wanted to know why they had to shower still wearing their swimwear. For the life of me, I couldn't think of any reasonable answer. I still can't. Except that there was a directive fixed to the wall, but that's not a real answer.

As a young boy in the late 1950's and early 1960's, I used to share a bath with my sister. At my grandparents' house, the only house in their area to have a bath, my sister and I some of our cousins of both sexes bathed together and consecutively. My grandparents lived in a poor farming community where there was little disposable income and prepubescent children did not wear any underwear. It was considered an unnecessary expense. We didn't find it at all unusual. At the nearby beach we all ran around naked and carefree until our ages reached double figures. We watched various varieties of mammals copulate, give birth and die and knew instinctively that we humans were part of that cycle of life.

In the evening we used to watch one of only two TV channels available – BBC or ITV. For a while there was a programme where FULL FRONTAL NUDITY was shown. And around 6 pm! The programme was about primitive communities and aboriginal tribes. I recall clearly that several episodes featured Amazon tribes where the men and boys tramped through the jungle with their penises either tied to their body or flapping around while the women and girls were as naked as the day that they were born. (They still exist today - you can see them here.) To the best of my knowledge, not one complaint was made about this prime-time nudity. I wonder if totally naked white folk frolicking in their gardens would have been similarly received?

I asked my parents why only black people could be naked on the telly (I was an annoyingly precocious boy). They couldn't answer. The same thing happened when I asked why men could show their breasts in public, but ladies couldn't.

Society in the Republic of Ireland was even more sexually repressed at that time than in Northern Ireland, where I lived. However, one well-respected Dublin newspaper showed a shapely pair of breasts and informed its readers that they belonged to a celebrity. The readers were invited to guess to whom the breasts belonged. There was a public outcry and incredulity that such a respected paper would indulge in “pornography.” Prominent politicians and religious leaders were much less vocal when the owner of the breasts was revealed to be an Irish politician – a man!

I worry about the messages that our society is giving its youth. For example - are parts of our bodies too shameful to show? is nakedness only sexual? in the media, why is it that only young women can disrobe? why do film and TV censors not become corrupted, if they believe the material they ban can corrupt? why do some women expose their genitals to a male gynaecologist, but not to their husbands? why is it acceptable to show naked “primitive” (always black) people in the popular media, but not “civilised” (white) people?

I have to admit to believing that my outlook on sexual behaviour and nakedness is unusual for a male in western society. I find pornography boring in the extreme. I avoid strip-clubs and find pole-dancing distasteful. I believe in the total equality of the sexes. I think that breast-feeding in public is acceptable. All peoples of all races, cultures, ages and degrees of “civilisation” are equal in my eyes. And all bodies of all people are beautiful in their own way.

Perhaps these subversive views make me a danger to society.

Wednesday, 18 February 2009

My Autistic Son - Part 5 - a traumatic incident

To read this story from the beginning, click here

Winter, early 1992.

3 am.

The bomb blast had almost destroyed the entire front of the building. 20m of shop front had been reduced to a black hole framed by tangled aluminium window frames and surrounded by an almost luminous concrete and tile shell. 60m² of reinforced, bomb resistant, plate glass had been reduced to pebble-sized lethal fragments or dagger-sized shards. The white, decorative, exterior tiles were either missing or cracked, giving an overall impression of an insane mosaic.

My city centre shop, the flagship of my business, had been decimated.

Colm looked at me and asked, in his usual truncated manner, “Why bomb, dad?”

I had no answer.

I could not explain the logic behind destroying lives, livelihoods and property in the name of a political agenda. The IRA, the perpetrators of the bomb attack, would give reasons, but to me there was no logic behind their actions. How could I explain this to Colm?

* * * * * * * * * * * * * * * * *

In the years following Colm's diagnosis (that he had glycogen storage disease and was, in the terminology of the time, mentally handicapped), the hospital continued to carry out tests. However, the frequency of the tests diminished over time. Although none of the tests supported Colm's diagnosis, it was still “official”. It wouldn't be changed, I was told, until a more fitting diagnosis was found.

Colm, age 4

In retrospect, I can see that Colm's autism was becoming increasingly obvious as he grew up. He had most of the classic symptoms but somehow health professionals failed to notice them. He also exhibited symptoms of Asperger's Syndrome. When he was about 10 years old, Colm began to have epileptic fits. Quite common, we were told, in mentally handicapped children. (It is even more common for children with Autistic Spectrum Disorder.) This was easily controlled with medication. It was also around this time that a family doctor became a regular client of my business. We became quite friendly and I told him about Colm. The doctor had a son who had been diagnosed as autistic, and I learned that he had many of the symptoms Colm had. I began to wonder if Colm was autistic and looked up some books on autism at Belfast's reference library. Not written for the layman, I found them hard to understand and dropped my research. My own family doctor, when I mentioned the possibility of Colm having autism, told me that it was “most unlikely”.

In 1980's society in Northern Ireland, women still predominated as the main care-givers in the family unit. This was very noticeable in the way I was treated by the health professionals and social services. My wife cared for our son's daily needs at home, but left everything else to me. I was happy with this arrangement and was surprised that so many others found it unusual. When social workers called, they always asked for Mrs ____. At the hospital, which Colm attended for regular check-ups as well as various tests, the receptionist always called for Mrs ____ and was surprised when I would present myself. “Is your wife not well?” I would often be asked!

Colm had progressed from Mencap Nursery to a junior special school (now called “Special Needs” school) and from there to a Parkview Special School in Lisburn. Lisburn is 8 miles from Belfast and the Health department had arranged transport between the school and our house.

Health department? Yes, in Northern Ireland physically and mentally “handicapped” children were considered a health problem, not children in need of the education! This situation only changed in the early 1990's after the British government took over responsibility for Northern Ireland's internal affairs. However, making educational opportunities for children with disabilities equal throughout the United Kingdom was yet to be achieved. I discovered that when he became 16, Colm would have to leave school. His only options were to stay at home and vegetate or go to an adult day centre where he would be “suitably occupied”. In England, however, his education could continue until he was 23. Part of me wanted to move to England for Colm's sake; but a bigger part of me didn't want to give up my successful business, my hilltop house with spectacular views and reduce contact with other family members.

Colm, on the left, aged 11 enjoying life at school

But the direction of our lives began to change one cold, dark, winter's morning at about 2.30 am...

All was quiet in my comfortable hilltop house, about 10 miles out of the city in a scenic country area.

My family and I were fast asleep.

Ring-ring, ring-ring, ring-ring....” It was 1992 and most telephones still had bells. The ringing was incessant and eventually stirred me from a deep, peaceful sleep. The phone was beside my bedside clock. Who could be ringing me at this unearthly hour? I answered the phone with a slurred “Hello?”

Is that the owner of the Emerald Electronics shop in Belfast city centre?”

Who wants to know?”

It's the Police. There has been a large explosion in the city centre. Your shop has been severely damaged. The premises are insecure. We need your attendance as soon as possible.”

I was fully awake now, sitting bolt upright in the bed. In the shadows, I could make out Colm approaching. The phone had obviously wakened him up too.

Why phone, dad?”

It's the police, Colm. There has been a bomb. I have to go to the shop now.”

Bomb?” he asked in his high-pitched voice indicating incredulity. “I come too.”

There was no point arguing with him. He wouldn't go back to bed now, anyway. Instead, he would wake up the entire household. I dressed myself, helped Colm to dress, told my wife where we were going, and had left the house within 10 minutes.

We were in bomb-blasted Belfast city centre 15 minutes later. Utter devastation surrounded us. The entire street was a mess of broken glass mixed with roof tiles and pieces of masonry. It was lined by destroyed or damaged vehicles. As I surveyed my ravaged premises, I had an acute feeling of emptiness. It was as if the IRA had destroyed part of me as well as part of my business. I felt so bad that I lit up a cigarette – the first since I gave up smoking a couple of years earlier...

The darkness was illuminated only by the red and blue flashing lights of the security services or the amber flashing lights of workmen's trucks. The street lighting had also been destroyed and there was no electrical supply in the surrounding area. A policeman was guarding my premises (no longer a shop) to prevent looting. When I arrived and identified myself, he left. A random workman approached me and asked if I wanted the premises boarded up. I had forgotten to bring a torch, so I couldn't investigate the interior of the premises. There was nothing I could do until daylight. I gave him the ok and as if by magic, a team of men appeared with huge sheets of wood and began to attach them to the building. Apart from the noise created by workmen and occasional vehicles moving carefully around the d├ębris, the area was unnaturally silent. There were few onlookers. No-one had been injured in this huge blast – a warning had been given – so the news media had only been marginally interested and local people had become used to this kind of occurrence. In fact, most would already be asleep again.

Colm wasn't used to bombs. He had seen the results of them on the TV many, many times, but he never expected them to affect dad's business. The bomb which had wrecked dad's shop was a major event in his life. He talked about it frequently and often had nightmares about it. Colm, although he didn't understand it, felt less secure.

Two years later, there was another incident which was even worse for Colm. One which would change all our lives forever.

Now go to Part 6

Saturday, 14 February 2009

The Agoraphobic Valentine's Day

When Carla offered to look after her little brother and sister yesterday evening, Marie and I seized the opportunity. Joseph and Orla were excited (as always) about going there. We took them to Carla's house just before dinner. That left us with the whole evening to spend as we wished. Just the two of us. All by ourselves. Our slightly early Valentine's Day celebration.

We started by having an Indian meal. Marie was too anxious to eat out, so we fetched our favourite Indian meal from our favourite take-away. Afterwards we went to an agoraphobia-friendly cinema to watch Slumdog Millionaire. I was pleasantly surprised to find that (for me) it lived up to all the media hype. We were left with a happy glow - just perfect for the occasion.

The evening didn't end there, of course, since this was our Valentine's Day celebration. The house was a child-free area, and I had accidentally turned up the heating ;), so we just had to remove some clothes and then....

Friday, 13 February 2009

Agoraphobia - a little progress

Marie's anxiety never stays the same. Sometimes it's better and sometimes worse.

Recently she has been going through one of her worse phases. The worst I've ever seen her, in fact.

Unsurprisingly, Marie has also noticed this and is getting fed up with it. She has decided to do something about it. After several hours of online research, she uncovered two therapists who live close to us. One does NLP and hypnotherapy; the other does hypnotherapy and CBT. Both of them are prepared to see Marie at home.

Marie decided to interview them. After all, some believe that the relationship with the therapists is as important as the therapy itself.

One of the therapists impressed Marie more than the other, so sessions commence next week.

Now Marie is planning a holiday for two in Cannes and has already arranged for her mother to look after our children. She is also considering a trip to the Czech Republic with her dad, a former motorcycle scrambler, to visit a famous motorcycle museum.

It doesn't mean that these things will happen, but it does mean that right now, Marie believes that they can happen.

So we have some progress. I'm hoping that it's the first step in a longer, successful journey...

Wednesday, 11 February 2009

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”.

Thursday, 5 February 2009

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 4th 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 3rd 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

Tuesday, 3 February 2009


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.