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!



15 comments:

Crystal Jigsaw said...

That is one tale to tell. And a beautiful photograph of your boy looking really happy.

How incredibly unprofessional of June to have given Colm her number, something someone in her position should have known better about doing. In fact, I'm surprised she wasn't investigated and even struck-off.

I have heard many terrible things about social services, but I have also heard good things. But fighting is always the only thing parents are left with when all else fails. I commend you on being a wonderful father.

And thank you for sharing this story with us.

CJ xx

Casdok said...

Sounds as though much of this could have been avoided. Poor Colm. And poor you. But very relieved to hear he is so much happier now.
I am now on month 5 since trying to move my son. So i do know a bit about it so i read this with my heart in my mouth and a tear in my eye.
Excellent about Colm settling so quickly and the new home is so successful. Gives me hope.

rosiero said...

So glad there is a happy ending and Colm looks so content in that photo. Such a shame that he was mucked about by the professionals. You should have not felt guilty - you did everything you possibly could.

Robert said...

CJ - June is still working at the farm, but I'm pretty sure that she isn't giving out her phone no. any more.

When I first moved to the south west, Colm's assigned social worker was terrific. To be fair to his last one, she didn't know him and her work load was so great that she never had time to get to know him. The head social worker isn't there any more and his replacement seems to be much more on the ball. I have never much needed social services, but when funding is an issue, they hold most of the cards.

I am literate and intelligent and know how to present an argument. When necessary, I know how how to enlist assistance and I can make the time to follow things up. I can pretty much guarantee that Colm will get the best care available while I'm around. But until recently, the system was unfair. It favoured people with family like me, and the less articulate lost out. Luckily, since April 2007 there has been an Advocacy Service. I hope that it has evened things out.

Robert said...

Casdok - Funding for disabled people is always being squeezed and it makes life difficult for the most vulnerable in our society. Not many in society care.

If I can ever help you with arranging care for your son, just email me. We all need to stick together!

Robert said...

rosiero - Colm would probably have been happier living with me, but it would have adversely affected the other children. I felt guilty about letting Colm down, even though I didn't really have any choice. Since he's pretty settled now and able to mix more with the rest of his family, my guilt has pretty much disappeared.

Thanks for your concern.

Nechtan said...

Hi Robert,

Your guilt in the first paragraph is understandable. What an inner turmoil that must have been knowing you as the only person with the key to your son's short term happiness had to deny him for what you believed to be the greater good. The future holds know guarantees so that type of blind faith must have been hard to employ. But the great thing about posting this in retrospect is that you now see what your determination has brought about. Colm has turned into a great independant young lad and that would not have been remotely possible had you taken the easy path. I would guess at this moment in time Colm would be at home with you now completely dependant on his father and lacking in social skills.

It is a lovely end to your series of posts about your son's difficult life and I hope all those days are behind you and Colm now. It certainly looks like everything couldn't be going any better for him.

All the best

Nechtan

Robert said...

Nechtan - I guess that in the circumstances prevalent at the time, I made the best choice for Colm. And yes, he IS doing pretty well. Also, I'm not so worried about what will happen to him after I die.

Thank you for your generous comment.

Stephany said...

I'm glad to read he is doing well and the place is a better one. The guilt is very hard for me, a daily struggle.

Nota Bene said...

So glad this has a happy ending.

maz said...

Hi Robert, Colm looks so happy in that pic!
I'm glad you dug your heels in and got a good service for him!

I just worry for those with no back up as they get left behind don't they.

colm's a lucky lad!

maz x

Turf Dad said...

Working with social services can be a lot of work. My wife and I have had good luck with our case worker so far. You DO have to do your homework or you won't all the "services" that you are entitled to.

Mandy said...

Hi Robert

It seems a much happier now than then for Colm and that must make you feel more content and other members of the family more settled.

Is important to keep fighting for what you know is right (although that can be so draining).

Hope Colm continues to be comfortable and happy where he is.

Robert said...

Stephany, NB, maz, TD & Mandy - thanks for commenting. I'm content with Colm's environment now. However, I do worry about those less able than I to fight for what they and/or their families are entitled to.

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