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JeanneA

Advice please for tomorrow

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I have Glen's annual review tomorrow and I don't know whether to bring this up or not, please ladies I would appreciate it if you could advise, what would you do if you were in my position? Well, Glen hasn't been out in over 4 weeks since the big incident at the home when he was aggressive towards staff and destructive, destroying most items in his room and broke the t.v. in the lounge. Staff are not putting any pressures on him at all since that time. They do however ask every day if he wants to go out. Also they give him the choice every day of pyjamas after bath (in the morning) or normal clothes, every day Glen picks pyjamas which to me indicates that he wouldn't pick normal clothes because he would think that he may have to go out. Glen has now worn pyjamas every day for over 4 weeks. Do you think I should raise this issue tomorrow with the manager? Do you think staff should be firmer with Glen to try and get him to wear normal clothes? I'm also concerned that Glen is getting no fresh air, no exercise and as he is eating well he is gain weight. Thank you.

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Hi Jeanne, I do see your dilemma and it is tricky. I can understand why you'd be concerned, but I'm also unsure about the staff being more 'firm' with Glen. At the end of the day, most young people his age are free to make their own decisions and do what they want with their life. Glen is being looked after but he isn't in prison, he is also not in school, where children and young people are routinely told what they can and can't do. He is living his life and being cared for in the process and he has to have some choice and control over his life and what he wants to do from day to day. I understand as a mother why you would want him to go out and get fresh air and exercise, I would also feel this.

 

What has made him not want to go out at the moment, do they know what triggered his outburst before? Does he not want to ride his bike anymore and would he do that for you, do you think?

 

I know I haven't been very helpful and, believe me, I do understand your concerns, it is difficult when our children make decisions that are not what we want for them or we feel are unhealthy. If they were to force him to go out and make him upset and stressed, what would be the benefit of that, it could just make him resist more. At least if they are continuing to give him the choice, he may decide he wants to go out again in his own time.

 

I would certainly discuss your concerns with the staff and see what they're reasoning behind their approach is but I'd try not to get too upset. Glen has his whole life ahead of him to lead and just because he doesn't go out for a few months, is it really such a big problem? Obviously you are worried that it will become the norm, but things change and people change and he has lots of time to do lots of different things. Try not to worry so much.

 

~ Mel ~

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Hi Mel you make a good point about Glen being able to make his own decisions, I should have thought of that. He hasn't wanted to go out since his outburst 4 weeks ago and it is thought now that the outburst could have been due to the wisdom tooth starting to come through causing Glen great pain and the only way he can express that there's something wrong is by hitting out or being destructive. Glen hasn't had his bike at this care home as the roads are quite busy and the carers are older ladies but instead Glen had been enjoying long walks, trampolining and drives out. Hopefully he will get back to these things in time like you said. Yes Glen could easily become distressed if he was forced to do something he didn't want to do so I can understand why they are not putting any pressure on him. Thanks for your help I will let you know how I get on tomorrow at the meeting.

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I agree that this is a tricky situation. Personally, I do feel like staff need to be a bit firmer with Glen, but I'm only familiar with him through your most recent posts here so I could be missing some information. Through my own experience volunteering with a disabled youth group though, I've seen that sometimes you need to give young people a nudge in the "right" direction, or they will just take the easy way out and refuse to really make an effort to enjoy themselves, get involved with activities, and so on. I know it's also advisable to encourage individuals to dress "appropriately," and obviously, it's not very appropriate for Glen to wear pajamas *all* the time, especially if it's keeping him from going out with his carers. Of course he should also be given the opportunity to make his own decisions... It's very tricky indeed.

Maybe when his wisdom tooth comes through or gets sorted, he'll feel better and start to settle down again; here's hoping, anyway. :) Good luck with your review, and hopefully some good things will come out of it.

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Thanks very much for your comments, much appreciated. I will let you know how I get on later.

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Hi Jeanne id wait until his inflamed tooth has gone down, his filling filled and his eye checked. When he is pain free it could make all the difference to Glen and they have no reason not to start attempting to get him out again, let us know how it goes x

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Hi everyone, it was a very good meeting over 2 hours long! It was just myself, the manager Mel and the social worker, well and Glen of course as he kept coming and going during the meeting. It was held round the table in the lounge where Glen sits to eat, so had his snacks and lunch there whilst the meeting was going on. Well I have to say what a fantastic job Mel and her staff are doing. I'm glad I took the buns that I made for everyone :-)

 

They have had so much to deal with for several months but more so the last 3 months. The dentist that looked at Glen's teeth at the home said the wisdom tooth probably didn't cause the agitation in Glen a few weeks back as she felt he would only have noticed pain (if he did have pain) in the last 2 or 3 weeks. Mel who was in the Mental Health side a few years back thinks that Glen's mental health issues have not been properly addressed in the past which is why Glen keeps having these 'breakdowns' which are getting much worse each time. Thanks it is felt to the diazepam and another medication Glen has been put on he is so much better, no hitting out or himself for just under 2 weeks now which is very good considering how bad things previously. Also he is on the anti-biotics for his inflamed wisdom tooth and staff have noticed a difference since he's been on them. Glen is now very calm, looks happy, lovely smile, seemed really pleased to see me, I sat next to him, I really didn't want to leave, it's the longest time I've spent with Glen in some time. Mel said she felt what they are doing by putting no pressure at all on Glen is working. He previously got very aggressive regarding having a bath which went on for weeks, they have now overcome this and he is happy again, no problems and feel it's just a matter of time before he will want to go out again, and wearing normal clothes but they leaving up to him. They have tried putting out 2 sets of entirely different clothes but he wouldn't wear either and actually asked for his pyjamas, he has spoken occasionaly recently. Two psychiatrists are visiting Glen on Friday, one of them knows Glen from years back, she is a very good senior psychiatrist. Also on Thursday the behavioural therapist is going in again to see Glen. So lots of good things have come from the meeting.

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What did Glen say when he spoke recently, that's very interesting. :)

 

Could the staff choose clothing for him that resembles pj's, i.e. a soft shirt and jogging bottoms that could just as easily be worn outside as in? That way, he might get the comfort he wants but could also be suitable to wear outside?

 

Could the staff put his bike in a car and drive him to a park or somewhere safe where he could cycle with a member of staff riding with him perhaps?

 

Glad the meeting went well and put your mind at rest and that you had a nice time with Glen.

 

~ Mel ~

x

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Hi Mel, he said 'I want my pyjamas' and he's said 'no' a few times! He is perfectly capable of speaking he just choses not to. No Glen will only wear pyjamas, he is very smart they have tried other clothes but you can't get one over on Glen :-) He hasn't got his bike at this care home as most of the staff are older and also it's a busy road so we've still got his bike, but Glen was enjoying his long walks and went trampolining which they are hoping he will get back doing soon. At the moment he is very adamant about not going out, so they are going along with what he wants to keep him stable and calm. I was very shocked when I learnt about how much damage he did that bad weekend. The damage in total came to £4000. He broke some of the items of 2 of the other residents and 2 t.v.s smashed up his own room and many other house hold items. When I got to the care home there was skip in the drive with the broken items in, it was shocking to know just what Glen is capable of. They don't have locks on any of the doors at the home which is how Glen got into the 2 other residents rooms to get to their things. There is currently no t.v. in the lounge because Glen does not like to watch it and doesn't like anyone else watching it either!

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I am concerned about the amount of food Glen is eating, I was there just over 2 hours yesterday and he had one of my buns that I had made and taken in and a coffee, then about 10 minutes later he had a yogurt. Then about 20 minutes later he had his lunch which consisted of a ham sandwich (2 slices of bread), and cut up cherry tomatoes and lettuce, coffee and some strawberries afterwards. It was a very healthy lunch but as I say he is eating very frequently throughout the day and has definitely put on weight because he obviously isn't getting any exercise at all with staying in all day every day for 4.1/2 weeks now. I just don't like to say too much because I know how much the manager and staff have been through of late and how committed they are to keeping Glen there whereas other homes would have definitely got him admitted to a mental hospital considering how he was just over 4 weeks ago. He did a lot of damage which came to £4000 altogether, so you can see why I'm reluctant to say too much about the eating side of things. I also picked up on the fact Glen only sleeps about 2 hours at a time during the night, that to is probably due to not doing anything in the day, so he doesn't get tired.

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Maybe his appetite is due to medication as well?

 

What we have noticed with our son is that he gets very anxious when demands are placed on him. But when those demands are removed, he often decides himself to do the thing he initially refused to do.

 

I think that Pathological Demand Avoidance is something that most on the spectrum have to some degree.

 

If Glen is able to associate certain clothes with certain events, then he should be able to choose clothes if he wants to go out. Unless he is especially rigid and associates certain clothes with a certain incident that upset him and would believe that wearing those clothes would cause a repetition of the event that upset him?

 

Sounds like you are happy and confident with the staff. And i'm glad you spent more time with Glen on your visit and that you saw he was happy.

 

I think you would be right to ask staff to monitor his weight. We all know it is easy to put on weight and much harder to lose it.

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Hi Jeanne could his weight gain be a side effect of the medication? What is Glen like without any medication ? It is good to hear the meeting went well and Glen was happy.

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Hi, the new medication could be a factor with the weight, I could mention that. Glen picks pyjamas because he doesn't want to go out thats what I think as I know him so well. Also the last time he did go out was the day when he really became aggressive in the car and tried to get from the back seat to the front (7 seater) and attack the staff, who then took him back to the home and then it all began the terrible weekend of destruction and aggression.

I agree about the PDA Sally. I will ask staff to monitor Glen's weight. I do hope he does decide soon that he wants to go out again.

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Hi Jeanne, I wonder what made him decide to act then at that time in the car, or what that trigger was? If only you knew eh! I do hope everything has settled down and Glen will soon decide to get out and about again. It does seem like the home is trying hard. Heres to peace :curlers: x

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Hi Lisa, I wish I did know what triggered off the the situation that week, I did ask the manager again and I've asked staff but none of them had an answer. When Glen was in the car on that day I was told he was pulling his ears an screaming, then he tried to attack the staff in the care and when they got back to the home, one of the staff rung for the doctor straight away as she thought he could have something wrong with ears like an ear infection. The doctor came checked his ears and said there was no infection inside his ears but due to the pulling of his ears he had caused an infection behind them which he then had anti-biotics for. I think it's felt by the psychiatrist and the home manager Mel as she used to work in the mental health side that Glen has definitely got severe mental health issues that no-one in the past has ever resolved. When he start going out again, The psychiatrist wants Glen to have an EEG, MRI and ECG (I think I have got the letters right!)

I rang last night and spoke to one of the staff Nittaya, she is such a lovely person, very thoughtful and caring she has a son the same age as Glen, he is deaf. I'm always on the phone quite a while when she I speak to her she goes into detail more than some of the staff which I appreciate. Nittaya said Glen remains calm and relaxed still eating quite a bit but they only have one item at a time in the fridge so that way he doesn't overeat, mostly healthy foods like fruit and yogurts. They have other fridges there which Glen isn't aware of in an ajoined building to the house, where they keep the main food.

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Hi Jeanne

 

Actually toothache pain can travel up nerves into the ear. I've had it myself.

 

Sounds like the medication is helping and even allowing him to come out of himself a bit!

 

My son also used to choose pyjamas because he didn't want to go out - they're not daft!!

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Hiya, how are things with you and your son now? Yes they aren't stupid they know by chosing pyjamas they won't have to go out, this has been going on for 6 weeks now though a long time for Glen not to want to go out, not like him at all.

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