Thursday, 30 April 2009

My autistic son - the final part - he becomes a demolition man and gets locked up!

If you want to read the other parts of this story, just click here

After he had settled in at the farm, Colm would often ask me if he could come "home". Refusing him, I felt enormous guilt. I felt like I was abandoning him. The staff at the farm kept telling me that Colm was (after the first few months) happy there, but the guilt would not leave. Only consideration for his younger sisters prevented me from seriously considering bringing him home. However, as time passed and Colm seemed to be more content, the feelings of guilt diminished, while never totally disappearing.
He visited me regularly and developed a really good relationship with Marie. Although only 5 months older than Colm, she showed him such affection that he began to call her his “new mum”.

Good reports started. Colm was helping with the deliveries of the farm produce. Colm had started swimming. Colm had joined the local Gateway club. Colm was helping in the kitchen. Colm was taking cookery lessons.

His room had become full of consumer electronics. He had a TVs, a video recorder, a Sony Walkman, a Super Nintendo games console and monitor and a radio/CD player; and the relevant accessories such as videos , CDs and Super Nintendo games.

But as time passed, things changed. He became less active in his little community. He withdrew from all his chosen activities, one at a time. Although the staff still told me that he was happy, I wasn't convinced, and started to look at alternatives for him. Colm had two ways of telling me that he was unhappy – not wanting to return to the farm after spending a few days with me and disruptive behaviour.

What caused these changes? Colm, due to his lack of communication skills, couldn't tell me. I know of 2 definite reasons, but I am sure that there were more. One problem, obvious early on, was the high staff turnover at the farm. This meant that almost as soon as Colm had established a relationship with a new “Key Worker”, he/she would leave. The second reason related to Key Workers. Colm was allowed to form a very strong bond with them, to the exclusion of the rest of the staff, and when that key worker left, Colm was left without anyone. I complained about this and a new key worker was assigned to Colm. This lady – I'll call her June – was a long-time member of staff, so the chances of her leaving were much reduced.

June seemed to become genuinely fond of Colm and he reciprocated. Soon he was visiting June's home and meeting her family. Next he was attending family gatherings. But when June gave Colm her private phone number, the trouble started. He would constantly ring her when she was off duty. His incessant phone calls became intolerable. She had no choice but to change her phone number. Colm couldn't understand this, and behaved accordingly. Realizing that she had taken her relationship with Colm too far, June stopped the visits to her home and restricted the time that she spent with Colm to the hours when she was on duty. Naturally, Colm couldn't understand this, his behaviour became more disruptive and he withdrew into himself.

In May 2007, Colm spent a long, happy weekend with me. On the way back to the farm, he became very agitated. He wanted to go back to my house. I managed, eventually, to persuade him to return to the farm and I promised him that I would speak to the manager and his social worker.

Three days later, the manager of the farm rang. Colm had been extremely disruptive and had left the farm unnoticed. They didn't know where he was. The Police were informed and soon found him walking along a nearby road. He was going to walk to Dad's house. Colm insisted to the staff that he wasn't staying. He just wanted to go to Dad's house. They thought it best to accede to his request until he settled. I was there an hour later, and a very upset Colm came back with me.

He was very unsettled at my house too. He didn't want to leave; but he didn't seem to want to stay there either. He didn't seem to know what he wanted. He became very loud and even more unsettled, pacing around the house incessantly, talking to himself (which he doesn't often do) and occasionally banging his head against the wall. I asked his social worker, What should I do? My children are becoming scared of him, and he keeps them awake at nights. He's very unhappy. Without visiting him, she told me to give it a few days, and take him back to the farm.

Late in the morning of the 3rd day, I heard noises from Colm's room. I went to the door, but he had blocked it with furniture. He wouldn't come out or open the door. Then I could hear objects being smashed. When I tried to get into the room, Colm started screaming obscenities and threatening to kill himself. Marie tried to talk to him too, but to no avail. In desperation, I phoned Colm's social worker. She contacted the head social worker, who was in charge of the whole county. He phoned me. This process took about an hour. They're really quick in an emergency!!

“Ring the police” he told me.

“What can they do?” I asked.

“They've got secure accommodation and Colm can stay there until we arrange somewhere for him to go.”

“But all they've got in the local police station is a small holding cell...” I began to point out.

“It'll have to do. We can't risk Colm injuring himself.”

“Are you sure that the police can help in this way?” I thought it highly unlikely.

“Absolutely certain.”

I contacted the police, explained the situation, and they told me that there was nothing they could do; but they would attend anyway to assess the situation. Two very friendly police officers turned up a little while later. They could hear sporadic smashing noises from Colm's room.

“Has he hurt anyone?” they asked.

“No.”

“Threatened anyone?”

“No.”

“Carried out any criminal acts?”

“No.”

“Has he been certified insane?” they further enquired, hopefully.

“No.”

“Then there's nothing that we can do. The head social worker should have known that.”

“Can you please tell him that?”

And they did, and left. And now I was seriously questioning the competence of the man who was in charge of the county's social workers. A little later he phoned to tell me that a psychiatrist would be calling round. To do what? I asked. To assess the situation.

While we waited, Marie arranged for the children to be looked after. This was not a good environment for them.

The psychiatrist came an hour or two later. She didn't know why she was attending! She asked lots of questions while the room next door was being demolished. She rang the head social worker. After 30 minutes or so, the he turned up. He had arranged for Colm's Key Worker and another member of staff from the farm to come and pick him up. They would arrive in an hour.

Colm's room was quieter now, and eventually he emerged, sullen, to stand by the bedroom door. He wouldn't budge.

When June arrived, Colm went ballistic. He smashed his way back into his bedroom, followed by the head social worker, then June and the other member of staff from the farm, and finally the psychiatrist. I was too distressed to follow. Colm was still screaming hysterically, but after a while became quiet. They all emerged from the bedroom, including an ill-looking Colm.

“We had to sedate him,” the head social worker told me with an embarrassed smile – well, I hope it was an embarrassed smile.

One by one they all left my house. It became deathly quiet. Marie and I cautiously entered Colm's room. There wasn't much in it that hadn't been destroyed. We set about clearing the mess away before getting the kids.

I rang the farm the next day and was told that Colm was “a little bit upset, but OK”. Late in the afternoon, the manager of the farm phoned me. Apparently Colm hadn't slept all night – nor had any of the staff. He had been uncontrollable and had had to be physically restrained. They had contacted his social worker. A psychiatrist had visited, on the instructions of the social services, and had sedated Colm. His social worker and her boss arrived later and arranged for Colm to be incarcerated in a psychiatric hospital. He had been temporarily certified insane, and this would be fully investigated and a more permanent assessment made within a week.

The consultant in charge of the psychiatric hospital phoned up the day after. He was scathing in his criticism of the social workers' behaviour. He told me that Colm was in good shape and seemed happy in his new surroundings. He had spent “quite a while” with him, and as far as he was concerned there was nothing wrong with him. No psychiatric illnesses or breakdowns. He was just a very upset young man who didn't want to live at the farm. He would be staying at the hospital until a better place could be found – probably a week or so. He could be visited at any time and could come and go, supervised, any time he wished. He further told me that if I needed any help in getting Colm the btype of care he deserved, I was to contact him, and he would help in any way that he could. Colm and I had an influential friend!

After that, Colm's sisters and Marie and I visited him regularly. He told us that liked staying in the hospital. (There's a light-hearted post about the hospital here.)

The one week stay stretched out to...five months! But eventually Colm was moved to his present location. His new home wasn't social services' choice. They tried to get me to agree to moving Colm to a much cheaper, and totally unsuitable, large, impersonal home. Unfortunately for them, I had done my research (as usual) and had found a much more suitable (and expensive) place. They were forced to consider it, and when the consultant psychiatrist at Colm's temporary home in the psychiatric hospital sided with me, they reluctantly gave in and agreed to fund Colm's stay there.

Colm became very settled – so much so that within 3 months his care package was reviewed. He needed so much less care than expected that social services were able to cut the cost of his funding by more than 25%.

Colm is now very happy in his new house, which he shares with two other men with similar abilities. The house is supervised 24/7. Colm swims every week and can now swim over 20 lengths! He is riding again. He lives near all his close family and sees us all often. His placement has been so successful that for the 1st time, he has ceased to be an “active” client for social services. Also, for the 1st time since he left school, I feel comfortable about where he is staying. It has been well worth the effort to get this far!

As for the guilt I felt, mentioned in the 1st paragraph - that's history!



Tuesday, 28 April 2009

The Happiest Girl in Nursery School

Orla was the happiest girl in school today.


'Cos Mum went there.

Yes, this morning, for the first time, Marie managed to walk the 30m of path to the front door of the Nursery School. The path is fenced and too narrow for vehicular access, so it has always been VERY SCARYOnce there, she was able to go down the corridor to the nursery and explore the area near the door. A radiant Orla brought all her favourite nursery assistants , one by one, up to see her mum. When we went back to collect her this afternoon, Orla wanted to show her mum all her favourite places and the toys she liked. Marie was able to check out the rest of the nursery including the outside play area. She was obviously (to me) very anxious at times, but she coped. ...And made a little girl very happy.

Also today, Marie drove 2
½ miles to the next village to see her friend. What's new about that? Just that she drove there alone - left me at home. Another first.

These are just 2 examples of Marie's expanding her world. She has been expanding it in many other ways too.

There's more progress to come - I'm sure of it!

Friday, 24 April 2009

Charles Linden is nice and Robert is nasty

I have a confession to make. I was horrible to Marie. I was not a nice person.

Yes, that's hard to believe, I know. I can hardly believe it myself! angel smileys

Why was I horrible to her? Had she been horrible to me? Lied to me? Spent too much money? Crashed the car?

No, none of those things. In fact she hadn't done anything bad at all. Not even slightly. I was horrible to her just because I was disappointed in her achievements.

Let me explain.

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

Last Wednesday morning, an apprehensive Marie and I were to be found travelling up the M5 to Kidderminster, home of The Linden Centre. Charles Linden had invited Marie to meet him there. Marie had started loosely following The Linden Method a couple of months ago and soon afterwards she began to change. Agoraphobia was lessening its hold. For more on the history relating to Marie and The Linden Method, please click here.

The Linden Centre was easy to find, and I was able to stop outside right outside the door of the building. So far, so good. There was a panel just inside the door, where one can press a button and chat with a member of The Linden Centre staff. Marie pressed the button.

Hello Marie,” said Charles (how did he know it was Marie? I should have asked him.)

Hello,” said Marie. “I ain't coming upstairs!” And she ran back out to the car.

A couple of moments later, Charles appeared and approached our car. Marie got out to shake his hand. Somehow Charles persuaded Marie to try to get to his office, and I went off to park the car. When I got back to The Linden Centre building, Marie was stuck, halfway up the 2nd flight of stairs, panicking. Charles was talking to her in his gentle, reassuring, DVD voice. Marie managed to move upwards and got to the 1st floor. That's when she discovered that she had another 2 flights of stairs to go!

Somehow Marie managed the rest of the stairs. In his office, Charles chatted with her and soon Marie was quite relaxed. He talked about various aspects of anxiety and about how important a good diet was. After 1¼ hours of pep talk, Marie agreed to accompany Charles on a short walk. I decided to look around Kidderminster and told Marie to call me when she was finished. If you ever find yourself in the Midlands with a couple of hours to spare, DO NOT go sightseeing around Kidderminster (sorry Kidderminster residents). It would have been more fun to have stayed in my car, counting the bricks of The Linden Centre! After 1½ hours of unadulterated boredom, I had had enough and phoned my dear wife. Even a devoted husband has limits on what he can endure for his spouse!

So what had Marie been doing for 1½ hours? She had managed to walk HALF A MILE around Kidderminster's redundant warehouses, and then walked all around a MASSIVE B&Q store. Yes, she had panicked during her excursions, but she was, with Charles' aid, able to come down from her panics and they began to lose their power. She met me in the middle of the huge B&Q car park. We went the rest of the way across the car park to the store. Later, we walked around Kidderminster looking for somewhere nice to eat. We failed (not surprising, really), and had to drive out of town to find a decent pub for a meal.

Appetites sated, we went to (my oldest daughter) Carla's house to pick up our children. Marie was buzzing and wanted to go out for a walk with Carla. They went to a local shop. The trip was almost totally anxiety free. Marie was still buzzing. So much so, that, back home, she found it difficult to get to sleep. She had tasted freedom. Freedom from agoraphobia. The freedom to go where she wanted to. For the first time since I have known her, Marie told me that she believed that she could overcome agoraphobia. All that she could talk about, think about, until sleep arrived, was walking.

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

Next morning (Thursday), Marie and I went for a short walk with our dog. A 2-minute walk. Marie refused to even try to go further. 1½ hours of walking with Charles Linden. Two minutes with me. I was a little disappointed. It showed.

She wouldn't drive the children to school and nursery. I was upset. I didn't mind showing that.

I took her to the nursery to pick up Orla, and she refused to try to walk 20m (20 yards) to see, for the first time, the inside of our daughter's nursery. She walked 800m (½ mile) with Charles Linden and she wouldn't walk 20m with me??? I was very upset now. And I wanted Marie to know.

When I arrived home after collecting Joseph from school, I discovered that Marie had gone to bed and wouldn't get up. Now I was getting angry. Unpleasant things were said.

I made dinner and afterwards put Orla to bed. Meanwhile Marie went to the shop across the road (in he car) with Joseph. She returned with loads of junk food. The day after she told Charles Linden that she would change to a healthy diet!! By now, I was seething. I became nasty. I was, to my shame, horrible to my wife. And I stayed horrible for the rest of the evening.

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

At first on Friday, it looked as though nothing had changed. Marie didn't suggest taking the children to school/nursery, so I did that. When I got back, a cheerful Marie suggested going to town to buy herself a new handbag (purse).

In town, Marie told me to drop her off at the handbag shop while I went off to park the car. Not typical...

In the shop, Marie was wandering around the back of the premises without a care in the world. Unusual...

Then we walked to the car – about 200m (yards) – with no anxiety. Not normal...

And later, at Orla's nursery, while Marie didn't manage to get inside the building, she did walk some of the way there, alone, while I was inside. Progress...

(I nearly forgot – Marie did get a new handbag. It's smaller than her old one. It was easy to find a handbag smaller than the last one - Marie's old handbag was almost the size of a bin bag... The size of her handbag used to be a big problem. Moreover, she began to use the handbag straight away. None of this might seem important, but it is very significant to Marie.)

My cheerful, optimistic, confident Marie was back again. Actually, she was a more cheerful, optimistic and confident Marie. The meeting with Charles Linden was paying dividends. In the afternoon, Marie made an appointment for a smear test. This was something she had previously been too scared to do, . Next she contacted the doctor to ask for occupational therapy. Then she went to the photographer's and got passport photos - now she's planning a trip to France (with me, I hope!). That's progress.

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

Above - Stogursey castle. Right - Marie in Stogursey church.

Today (Saturday) Marie and the children walked the dog together. It was only a short walk - but a first for Marie. After lunch, Marie, the children and I went to the Somerset village of Stogursey just to have a look around it. Stogursey is best known for its large church (impractically large for the size of the local population) with its Norman period carved arches and its 10th century castle complete with a filled moat and drawbridge. We parked the car in south side of the village and walked to the church at the northern edge, looked around it and walked back to the car. This was a significant moment in our family. It was the 1st family walk! Joseph is nearly 8 and Orla is nearly 4, and neither had been for a walk with their mother before today. Joseph was very impressed (as was I)!

Sorry I was such an a**hole on Thursday, Marie. scuba diving in the UK

The future looks hopeful again!

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

Charles Linden has shown Marie that escaping agoraphobia is possible, and he has shown her how to do it. If she doesn't get rid of her anxiety now, there will be only one explanation -

She doesn't really want to.

I'll post further about The Linden Method itself - I just have to get paid first! (Only joking!!)


Thursday, 23 April 2009

My Autistic Son - Part 8 - Funding fiascos wreak havoc - and - a death in the family


HAPPIER TIMES!


...at the Fleet Air Arm Museum, Somerset, 2008


...on holiday, 2008


...at the Tank Museum, Dorset, 2009


...but before that...


In 1998, Colm was 18 and had to leave his school. The nearby further education college had facilities to continue Colm's education, but I wanted better.

No one was able to give me advice about which further education establishments would be most suitable for Colm, but his social worker did come up with a list of places which could offer courses for young adults with similar abilities to Colm. The only way to assess these places was to visit them. This task took a couple of months and I drove several 100's of miles. I made a short list of 3 potentially suitable places and visited them a second time. Eventually, I was able to choose what I believed would be the best further education establishment for Colm. It was a residential school which had stables and taught independent living as well as academic subjects. Colm would be able to indulge his equestrian pursuits. The only drawback for me was that it was a 2 hour drive from our house. When I relayed this information to all the relevant health professionals and Colm's social worker, they unanimously agreed that this was the best place for Colm at this stage of his life. All I had to do was apply for the funding from our local educatiuon authority. That was in January. In late August, we got the letter we had been waiting for. It was good news - Colm had been awarded funding for 2 years with a possible extension for a 3rd year.

However, for Colm those 7 months of waiting had proved to be exceptionally difficult. He knew that he had to leave his school, but didn't know where he was going, and until I had a definite decision from the education authority, I couldn't tell him anything. It was extremely stressful for him, and his behaviour at home was a manifestation of his stress. He had many bouts of "challenging behaviour (temper tantrums) which lasted between 2 and 4 hours. During this time he was implacable. I had to stop whatever I was doing and stay with Colm, trying to talk him down. He would bang his head against the wall, throw nearby objects around, shout at the top of his voice, exhibit threatening behaviour, spit etc. The rest of the family had to stay well clear of him, and his siblings stopped inviting their school-friends around, afraid that their friends might witness one of these episodes. During his worst episode, he smashed his bed, cracked the thick, solid pine door of his bedroom and destroyed most of the bedroom's contents.

These challenging behaviour episodes carried on for a couple of months after he moved to his new school, until he settled in there. After that, he had the most of 3 happy years there.

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

In early 1999, my father died suddenly. It was term time, so Colm was away, staying at his school. Because Colm and his grandfather had had a close relationship, I felt unable to break the sad news to Colm over the phone. After phoning ahead to inform the school what had happened and letting them know that I would be calling with Colm quite late in the evening, I drove for 2 hours to see my son. When he opened the door of his room, he looked at me quizzically.

"Why you here, dad?" Colm's speech was (and is still) truncated.
"I need to talk to you. Can I come in first?"
"Ok dad." He let me into his room. "Why you here?"
I took a deep breath.
"Your grandda died this morning, Colm."
No reaction from Colm. Then...
"Heaven?"
"Yes, he's in heaven."
"Lucky heaven." Lucky had been the family dog. "Tiger heaven." Tiger had been his grandfather's cat.

There was a pause.

"Watch James Bond, dad."

I was being dismissed! Colm wanted to watch a video! The conversation was over. Obviously Colm had felt no emotion about his grandfather's death. Subsequent enquiries to his school confirmed that Colm had been unaffected by the news. I am informed that this is a common situation where autism is involved and pretty typical where Asperger's syndrome is involved.

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

In 2001, Colm had to move again. His funding for education was finished. Now I had to choose (with Colm's acquiescence) where he should live. His first choice was to stay at home - the only place he knew well. His school and social worker felt that to live at home full time again would be a retrograde action. I also had to consider Colm's siblings. Their mother had deserted them at the start of 2000, so they were vulnerable and needed as stable and ordered an environment as I cold provide. Colm had had a detrimental effect on their lives already - would it be fair to risk a repeat of this? The answer was obvious.

I researched residential establishments in the same way that I had researched further education establishments. Again, Colm's social worker gave me a list of places to consider. After a few months, a couple of hundred miles and several visits to residential establishments, I thought I had found the best place. Set in a quiet rural environment, it was run by a charitable organisation, had its own farm where they grew organic food and produced organic eggs. Colm would have work to occupy him. There was plenty of space and - most importantly - it had two horses.

Colm was scared, but after I showed him other places, he agreed to try out this one. After a couple of weekends and a full week's stay, Colm decided that it would be OK to live there.

Unbelievably, I had the same funding problems as before, when Colm was due to move school. It took months to get a decision - months during which Colm, now back home since the school term had ended, was making his sisters' lives hell. He was in hell too, because after each bout of challenging behaviour, he would cry uncontrollably for a while. "My head, dad," he would say repeatedly, sometimes followed by banging his head against the wall for a while, indicating that he couldn't control his behaviour even though he knew he would regret it afterwards.

The decision about funding - favourable - arrived eventually and an apprehensive Colm went to his new home. As before, his challenging behaviour continued for a couple of months, but eventually subsided.

If you want to read the earlier parts of this story, you can click here.


Tuesday, 21 April 2009

Fighting agoraohobia & OCD


Marie's agoraphobia level has not increased. In recent times, a decrease in Marie's agoraphobia level was usually pretty swiftly followed by an increase of similar proprotions.

In fact, the current situation is better than that. Her depression has receded and she is finding new ways to fight her agoraphobia and OCD.

She is still driving around our (very small) town, but now she is seeking out new roads in an attempt to reduce her anxiety about driving alone. She has started taking the children and our dog to the playground and playing fields. Ok, she stands by her car while the children and the dog amuse themselves, but it's a new venture for her, and she would not have contemplated doing this a couple of months ago.

Marie has a thing about her footwear. For years she has possessed only one pair of shoes. They were always black and the same style and heel height. No longer. Recently she got some Uggs and got used to wearing them. Now she has some brown high-heeled sandals, cowboy boots and new trainers. The picture shows Marie with just some of her recently purchased footwear.







Marie has terrific, long, shapely legs. No, it's not just my opinion. On the rare occasions that she has let them be viewed by the general public, she has had admiring/lustful looks from men and envious looks from women. She normally hides her lovely limbs in jeans, but now you can see 90% of them in her recently acquired wardrobe of tiny, tiny skirts and short, short dresses.













Marie is currently choosing a new fitted jacket (or two) - instead of playing safe with her one and only jacket - a shapeless, hooded parka. In this picture she's trying on a new leather jacket. She hasn't decided whether or not to buy it just yet.

So it's habit-breaking time; and a more cheerful, more positive and more confident Marie continues her fight against her anxiety demons.

Saturday, 18 April 2009

Daddy's dead daddy


Orla and Joseph are very fond of their grandparents - Marie's parents. Sadly, my parents are dead.

"Is grandad your daddy?" Orla (age 3) asked Marie as she was making breakfast. Joseph (7) was in the kitchen too. I was in another room.
"Yes, he is," Marie replied.
"Has Daddy got a daddy?"
"Yes, of course he has. Everyone has a daddy."
"Where's Daddy's daddy?"
"He died before you were born."
"Why?"
"Because he got too old."
"I want to see Daddy's daddy."
"You can't sweetheart - he's dead now."
"I want to see him!"
Orla, clearly upset, left to come to see me. Joseph, witnessing this little drama, followed her.
"Daddy, where's your daddy?" Orla asked me, close to tears. I was unaware of her earlier conversation with her mum.
"He's dead, sweetheart. he got very old and died."
"I miss him!" Orla declared. "I want to see him."
"Well, he's a star now. He's looking down on me, looking after me," I told her, since I think she's too young to fully understand death.
"He's in heaven," Joe helpfully added.  He has heard about heaven at school.
"When it's night-time, I'll show you my daddy in the sky, shining brightly," I said. This seemed to mollify her, and she and Joseph left me.
Orla and Joseph reappeared in the kitchen. Marie was still there.
"Daddy's daddy is a star," Orla announced brightly to Marie. "Daddy's going to show me him tonight."
Joseph gave his mum a conspiratorial smile and a sly wink.
"I don't think Daddy really knows which star he is," he whispered.

Thursday, 16 April 2009

My Autistic Son - Part 7 - problems with authorities


Colm really enjoys riding, and he's pretty good at it. He has lessons once a week and is to appear at a horse show in the summer. He first started riding in 1996, when he was attending a "special" school in Somerset.

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

To read the earlier parts of this story, click here. For part 8 click here.

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

I had spent 6 months researching the best place to live in England which would combine a decent income with good education prospects for Colm, good schools for his 2 little sisters and good facilities for pensioners (my father decided that he would like to join us in England after we had got established there). So in December 1994, we moved to a little rural town in Somerset in southwest England. I bought a flat for my father and he relocated in 1995.

Colm enjoyed his new environment. It was safe, very little traffic, very friendly locals. He was immediatley accepted into the local community. Additionally, Colm had his grandfather nearby. He used to spend a lot of time there where they would both watch war movies and James Bond. They enjoyed each other's company. Colm was happy.

I introduced Colm to the excellent local doctors' practice and the county education authority and within a week he had been enrolled in a "special" school (not called a "special" school any more) and a series of tests to assess his mental and physical requirements had been organised.

My wife took no part in organising care for Colm and subsequently took hardly any interest in him. I don't know why this happened, but to this day she takes almost no interest in her son.

After a few days, Colm decided that he liked his school and he was very happy there . The school told me about an opportunity (nearby) to teach Colm to ride. He tried it and loved it, and, as is obvious from the picture above, still rides.

A few months later, the health professionals and mental health professionals delivered their report on Colm. He -
  • was not suffering from glycogen storage disease - so it had only taken 14 years to find that out! However, no alternative diagnosis was offered. Good news - no further tests for storage diseases!
  • had Asperger's Syndrome - never mentioned before, and a controversial diagnosis at the time. Even today, not all mental health profesionals accept that such a condition exists, and the vast majority of those who do, believed that it couldn't occur in a subject who also had learning difficulties...
  • was extremely healthy - good news!
  • had learning difficulties - ok, so I had been told that before.
Colm's social worker was a very dedicated man. As well as checking that Colm's needs were being fully met, he assisted me with getting Colm all the financial help to which he was entitled and told me what help was available for me as Colm's primary carer.

One day he asked me if I would like some respite care. He didn't have to ask twice! He put me in touch with a lady who had recently been approved to provided respite care for disabled people. Colm and I visited her a few times, including a weekend stay. She lived on a farm with lots of space and where there were horses (she and her husband were well off and were really only playing at farming). Colm, after feeling insecure initially, warmed to her and loved the horses. The lady had a son, younger than Colm, whom we hadn't seen because he went to a posh boarding school. Everything seemed fine, so I organised a family holiday - 17 days in Nice in the south of France. I explained what was happening to Colm & he was ok about it, so off we went for a very enjoyable holiday.

On our return, I was given a message to contact Colm's social worker urgently. "Nothing to worry about" was also part of the message. I eventually managed to get in touch with him by phone (there weren't many mobile phones at that time) and he told me he'd bring Colm home straight away. After he arrived with a very tired-looking Colm, he told me what had happened. A couple of days after Colm went into respite care, the lady's son had come home from school and had started annoying Colm, taunting and teasing him. His mother seemed to be unable to control this. Colm, frightened and not understanding what was going on, went to the lady for security. Apparently he hugged and kissed her. She interpreted this as a sexual advance. This interpretation was absolute rubbish - Colm had not exhibited any sexual awakening at that time - and still hasn't! Nevertheless, somehow she persuaded her doctor that this had happened and since Colm could not be returned home (although he could have gone to his grandfather's), he prescribed a knock-out dose of tranquillizers for him. Hence the tired-looking Colm now at home - he had been spaced out for nearly 2 weeks! For unknown reasons, neither the lady nor the doctor contacted Colm's social worker or his own doctor (whose number had been given to the lady). The social worker only found out about the situation when he paid a visit there to check that everything was ok. He should really have checked everything out earlier than he did (we were due home 2 days later) but like me, he had no reason to suppose that anything would be wrong.

This traunatic episode had ramifications for Colm which are still evident to this day. He is very mistrusting of strangers and takes longer to accept women into his circle of "safe" people than men. It affected me too - Colm has never had respite care since.

Tuesday, 14 April 2009

Got a few spare minutes?



If you've got a few spare minutes, you maight like to try a global personality test - see the link above.
You might find it informative or entertaining.
In my case, the results seemed flattering, so I did it 3 times, with more or less the same results.
Apparently, this is me (based on the above results)...


Stability results were high which suggests you are very relaxed, calm, secure, and optimistic..

Orderliness results were medium which suggests you are moderately organized, hard working, and reliable while still remaining flexible, efficient, and fun.

Extraversion results were medium which suggests you are moderately talkative, outgoing, sociable and interacting.

Or is that really me?
Sounds too good to be true...
On the same website you will find a Personality Disorder test.
Marie did this and the results were exactly what I would have predicted.
If you would like to give this test a try, click here.

My thanks to Jennifer at BPD in OKC for pointing me to this site.

Saturday, 11 April 2009

Agoraphobia adapts

Just got home last night...

I wanted to go to Windermere (Cragwood Country House Hotel) for a business seminar, and Marie wanted to visit her friend Lynn who lives near Glasgow.


Click on the picture if you want to view the hotel's website.

Windermere is around 300 miles from here and Lynn lives another 150 miles further north. Although the sensible way for me to go to Windermere was by train, I offered to drive Marie to Lynn's house and then double back to Windermere. A mere 600 miles!

My business seminar was to last 4 days which meant that Marie would have to stay with Lynn for 4 days. 450 miles away from home. In a town she had never visited, in a house she had never visited... This created some anxiety. She kept asking herself variations of the agoraphobic's favourite question, "What if...?"

We were due to leave on Saturday morning, but by Wednesday Marie still hadn't decided if she would be able to go.

And then I got cellulitis in my foot.

However, I was determined to go to my business seminar if at all possible.

By Friday, it was obvious that I wouldn't be well enough to drive either to my seminar or to Lynn's house. I informed Marie that the only way she would get to Lynn's would be if she drove the two of us there. A couple of years ago, Marie panicked on the M4 coming out of London and (as any agoraphobic would do) has avoided all motorways ever since. After that, we either took A roads or else I drove on the motorway parts of any journey. This option was not available this time. To get to Lynn's, Marie would have to drive more than 400 miles on motorways, sometimes 4 and 5 lanes wide.

On Saturday, I wasn't well enough to travel, but I still wanted to go. The eternal optimist, I arranged for the children to go their grandparents' house on Sunday. Marie could go too, if she wanted.

On Sunday, after checking with the seminar organisers that it would be ok to arrive a day late, I decided that I was going to go. Marie decided that she also wanted to go.

"Are you sure that you can't drive?" asked Marie.
"Absolutely" I replied. "I have to keep my foot raised - it's the only way I'll be able to travel. I'll be doing really well if I can drive the 150 miles to Windermere."
"Couldn't you drive some of the way?"
"No."
"What if I panic?"
"Pull over to the hard shoulder, wait till the panic subsides and then carry on."
"What if I can't go the whole way?"
"Then we'll have to pull off the motorway and go home."
"What if I panic at Lynn's house?"
"If you really can't stay there, call me and I'll pick you up as soon as possible."
"What if...?" There were lots more 'what ifs', but eventually Marie decided to give it a go.

Near midday, Collette and Neil collected the children and took them to their grandparents' and Marie and I drove off in the opposite direction.




Marie was able to drive most of the way before she got too tired to continue. (We found a convenient bush - if you watched the video clip, you'll know what I mean!) Yes, she had anxious moments on the way, but she didn't give in to them. It was tiredness not anxiety that prevented her from completeing the journey. I
felt able to drive the rest of the way, and the rest is history.

Marie had a really good time at Lynn's house, and my business seminar was well worth the effort I had put in to attend it.

I had to endure this sort of scenery!
Click on the pic for the Lake District website.


Not for the first time, Marie was able to overcome her natural agoraphobic tendencies to do something that she really wanted to do. I commented on this ability a couple of years ago in a previous post (click here).

So what do Marie's considerable achievements mean in relation to her most important journey - the journey away from agoraphobia?

Who knows?

Sunday, 5 April 2009

The agoraphobic cares for her carer

"I guess it's a virus of some sort"... is a quote from my last post, when I had a day of wildly fluctuating temperatures.

I was wrong.

I am recovering from another bout of cellulitis.

This bout has followed more or less the same pattern as previous ones, but Marie's reaction has not. Unlike other times, when my daughters and other friends were drafted in to help with my needs and those of Joseph and Orla, this time Marie has coped with everything. She has done the shopping. The children have been prepared for and delivered to school, collected from school have been prepared for and put to bed. All done by Marie and all by herself. She has waited on me hand and foot, since, until today, I have been pretty useless to anybody.

I should be fully recovered in a few days and back to normal.

But I really hope that Marie's "normal" stays away!

Wednesday, 1 April 2009

Agoraphobia & the incapacitated carer

Suddenly, just after picking up Orla from her nursery, I was laid low by a raging fever. I took the maximum amount of temperature reducing tablets, but to little avail. By the time I should have been collecting Joseph from school, I was weak and near-delirious.

Marie was not pleased. What could be done? She hasn't driven to Joseph's school on her own for many months.

All of a sudden, she took Orla and the large family car (she has a small hatchback of her own) and disappeared. I assumed that she had somehow mustered up the courage to pick up our son.

She didn't come back for a long time. If I hadn't been in a high-temperature induced sleep, I would have been worried.

Eventually she turned up, safe and sound, with both children, Easter eggs, chocolate cookies and other extremely fattening cakes and biscuits. Marie and the children had been to the school's Easter Fayre! She hasn't been in the main school hall for years!

Later she drove to her friend's house on the other side of town.

I used to be worried about how Marie would cope if I took seriously ill or worse. Today she showed me that she can do what's necessary when the need arises.

I'm so proud of her.

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

My temperature has been up and down all afternoon and evening. I have a headache and a very sensitive stomach, but I'm a lot better than I was. I guess it's a virus of some sort (isn't everything, these days?) and it will go away in a day or too.

I hope Marie's progress lasts longer than that!

Children, sex, lesbian love and swinging


Children's innocent remarks are often entertaining and sometimes amusing, and probably never more so than when commenting or enquiring about potentially embarrassing aspects of sex.

For example, one morning Marie and I were feeling somewhat amorous. It was early in the morning and long before our children would awaken, ready for stomach-filling activities (aka breakfast). I won't go into great detail here, but to set the general scene, I must inform you dear readers that Marie and I had passed the initial amorous advances and were about to sample the main course....when we heard a small voice say, "Daddy!"

Immediately Marie and I froze. We directed our attention to the bedroom doorway, where Orla was standing, holding her "baby".

"Daddy", she continued in a serious lecturing tone, "you shouldn't go to sleep on mummy. It's not nice!"

* * * * * * * * * * * * * * *
At the advanced age of 7, Joseph is already quite well informed on the mechanics of procreation. However, one evening, he appeared troubled, and approached Marie for illumination.

"Mummy", he started, "you know that ladies have to be married to have a baby..."
"Well, they don't have to be married - they can have a partner," Marie suggested.
"I know that!" was his disdainful reply. "But Auntie X...she has a girl partner, and she has a baby. How did she get her baby? Two ladies can't make a baby, can they?"
"No, they can't. Auntie X had to go to a hospital to get pregnant." At this point, Marie is wondering how much more explaining she will have to do.
"What did they do at the hospital?"
"Auntie X got some man stuff there." Marie is getting desperate here. Will she have to explain everything?

She was in luck. Joseph had received all the information he needed at that time. Somehow I have a feeling that we'll be revisiting that subject again...

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

On an entirely different subject...

Pushing a toddler on the swing is one of the less interesting tasks undertaken by parents. To alleviate the boredom, one day, I carefully positioned myself in front of the toddler of the day in just the right place so that I could be kicked gently while pretending that, looking in the other direction, I was totally unaware of this. TOTD obligingly kicked me in the backside and I performed an exaggerated jump of (mock) surprise. TOTD thought this was absolutely hilarious, and I had to keep repeating this antic ad nauseum.

Since then, I have repeated this exercise with many toddlers. Every single one has found it exceptionally amusing and the only problem has been for the toddlers to avoid laughing themselves sick.

Of course, once they get older they outgrow this.

Joseph, who is one of the children who has outgrown this activity must have fond memories of it. Recently, I left him and Orla to amuse themselves on a playground while I amused the dog. on the grass nearby. As I was returning to the playground, I noticed Joseph entertaining Orla on the swing in a similar manner to that in which I had amused him a couple of years ago. I managed to capture some of this with my trusty Sony Ericcson mobile phone, and the result is below.

Joseph and Orla have the normal sibling rivalries and rows of course. However, Joseph often exhibits care and affection for his little sister, and she, naturally, dotes on him. Here he is amusing Orla by copying me. I am both flattered and proud.