JeanneA

Hi Lisa, yes Glen's eye may have settled down again. He is due to see the eye doctor again soon, but only if staff can get him there. I hope Glen remains happy now. :-)

Hi Mel, no Glen would not wear any helmet on his head, this has been raised before by professionals. The care home manager Mel attended a meeting with the psychiatrist and another senior doctor last week. The psychiatrist is changing Glen's anxiety medication to a long term one. Both the psychiatrist and the other doctor are going to visit Glen in just over a week's time at the home, which I think is a good idea. Both doctor's also said that the most important thing they felt is to stabilise Glen's behaviour and not put any pressure on him at the moment. He is on the list for various therapies, but as they said he needs to attend and engage in therapy sessions, at the moment he won't even go out for a drive, so you can see their point. They did feel Glen is hitting himself to get the 'good feeling' from it and to feel calm again. I went to visit Glen yesterday, first time in 6 weeks. I couldn't believe it, he was so smiley just like he used to be, I hadn't seen him smile like that in ages. I stayed for 30 minutes. Glen went to his room a couple of times, but did come back down again at sat at the table eating one of the yogurts I took in. Staff said he'd had a settled few days. I really didn't want to leave, but it was to come away thinking how much better Glen was. Hopefully this settled behaviour will continue and Glen will want to go out again.

Thank you for your help I will look at your link :-)

Thanks very much for your reply. Glen has already hurt his eye so severely that he has very little eye site in his right eye. He had an operation for a detached retina in 2012, he used to hit his eye plus also hit his head and face. Since the op he has unfortunately been hitting his eye again and when it was checked recently, the specialist said, that continuous hitting of his eye obviously made his eye worse. He has to have eye drops for life.

I've just put this on the other thread but I thought I would just ask if there is any young person that hits themselves with a lot of force for long periods of a time, as I read that this forces the brain to release endorphines with makes the person feel very happy afterwards. Would like to hear from anyone who has experienced this or knows anyone that has, thank you.

Hi things are still not great with Glen. The home manager went to see the psychiatrist on her own last week, as Glen wouldn't go with her. He did increase the diazepam to keep Glen calm that was about it, but there is another appointment this Thursday for Glen to see the psychiatrist again with another professional, but it's highly unlikely that Glen will go, he still will not go out (hasn't been out for nearly 2.1/2 weeks now) and is hitting himself frequently but is very happy and smiley afterwards, I think he is hitting himself to force the brain to release the endorphines to give him a good feeling. I have been looking this up on the internet and it is quite common apparently. Glen should have gone to the dentist this afternoon, I'm waiting to hear if he went, but I very much doubt it.

They have asked Glen outright if something hurts and he has nodded at times, the problem is Glen is known to nod at anything, so you never know if he is in pain or not. What works best for the home is when they point to various parts of Glen's body and Glen has nodded to what hurts, but it is hit and miss I'm afraid. I've also found out from the home manager a short while ago that Glen over the past couple of days has become very active in the home and is searching for food again everywhere, now this is what Glen did when he moved into the home a year ago this week. So, it does show you Glen has these cycles, he was the same when he lived at home. I remember Glen going through all the cupboards for food, it seems Glen goes from one thing to another. I remember I kept him busy doing household chores to keep his mind off of going through the cupboards.

Hi sally I've just heard from the care home manager and Glen has an appointment on Thursday, I have just mentioned that Glen's eye could be irritating him. Glen remains calm but quite unsettled. I don't know how they will get Glen there as he still won't go out. I will let you know what happens.

The home manager Mel keeps trying to contact the hospital psychiatrist, but he isn't the most helpful of people, Mel doesn't like him at all. I went to the crisis meeting last Tuesday with her at the hospital where the psychiatrist works. I didn't take to him either he wasn't willing to review Glen's medications unless Glen was admitted into hospital and he even walked out of the meeting before it had finished with no explanation! There are 2 hospitals Glen could go in, in the area where he is, the one where the meeting was held at and the other one which definitely would not be suitable which is why Mel fought for Glen to be kept at her care home to be given the chance of getting better without being hospitalised. Glen has been in hospital twice before, once in December 2010 in Northumberland for a mental health assessment and the next was in December 2012 in Birmingham (Glen was in a care home in Coventry at the time). I dont really think either assessment resulted in any answers which is why I don't know whether having yet another assessment in another hospital would make any difference or would just cause more distress to Glen who is in a very fragile state at the moment. Glen is on medication for depression, but has been on the same one since 2011 and I feel a change could be needed. The psychiatrist did try Glen on something not long ago which didn't suit him and could have led to Glen's behaviour last weekend, so that was stopped and diazepam was prescribed instead, which is definitely helping to keep him calm. He has been much better since being on this. At the moment Mel and her team are taking each day at a time hoping Glen will start to get back to his happier self, they are not putting any pressure on his whatsoever. Since the crisis meeting the care home are getting phone calls twice daily checking on Glen, so if anything should occur again hopefully they will act straight away before Glen's behaviour escalates out of control. I don't know about looking at hospitals outside the area Glen is in, I would have to find out if that was possible. Like the staff I have to give Glen the chance to recover in his own time, he has great carers around him. Although of course I am worried, am on edge all the time, hoping the phone doesn't ring with bad news :-( Glen had been hitting his right eye for some time which has probably been hurting him, he had an operation for a detatched retina in 2012 which was a success, but gradually Glen's eye became worse again through Glen hitting it and now he has virtually no eye sight in that eye, the eye doctor said it wouldn't be worth operating again as he didn't think it would make a lot of difference to his vision so it wouldn't be fair to put Glen through another operation. Glen has eye drops which he has to have for the rest of his life.

Hi Sally, sorry to hear what you are going through. i know all about emotional trauma and pointing the finger at the home environment I had that when Glen was at School so I do sympethesise. Some schools will do anything to point the blame within the home and not within the School. I am concerned that Glen is very isolated at the home, he spends all his time in his room apart from coming down 2 eat. Don't get me wrong the carers do go up and see him, but I'm just so worried about what happens if he doesn't get better. I'm sure he's in a deep depression. I don't know if I should have insisted on Glen going into hospital or not. The home is good but they are just carers, whereas in hospital he would get treatment. Unfortunately the hospitals have not got a great reputation, which is why the care home manager wanted to keep Glen at the home and the last thing I would want is for Glen to go somewhere that he is not treated very well. I know the carers at his home and they are lovely people, and another 'move' doesn't seem fair on Glen, he's had so many moves in his life. I really don't know what the answer is, I just hope and pray Glen gets better in his own time.

Thanks Lisa, I've rung tonight and Glen's had a fairly calm day, came down a couple of times for meals but otherwise stayed in his room. I hope he gets over this difficult period soon. I feel so sad for him, it's really difficult not seeing him as well but I don't want to do the wrong thing by visiting at this time as staff have enough to deal with. He hasn't been out since last weekend, they are not pushing it until he is more stable, which is for the best. tc Lisa.hope all is going ok with your son :-)

Hi Lisa, yes I quite agree our sons don't deserve it at all. The eye doctor thought Glen probably had been suffering for a while with his eye and didn't recommend another op, he felt it would probably not give him back much site and it would be too much for him to go through. I feel so sad for Glen, I talk to my husband (Glen's step-dad) about how I'm feeling but he doesn't like me to keep going on about it so I haven't really got anyone to confide in, my daughter helps in her way but just keeps telling me not to worry, but the problem is I do worry, I always have, about all my kids. My Mum bless her was just the same so I definitely take after her :-) Julie takes after her dad, (my ex), she never worries or gets stressed about anything, I wish I was like that. Anyway, lets hope as our sons get older they will be more settled and aggressive outbursts are no more, well we can but hope, can't we?

Hi Lisa, lovely to hear from you. Yes I am lucky that Glen is in an excellent care home, whatever happens to them or anything around, i.e. furniture etc all they care about is the young people that live there. Also they know what the hospitals are like in that area and wouldn't wish to see Glen be admitted, whereas Glen's previous care home admitted him as soon as he became aggressive. Like your son, Glen's had eye problems with the detached retina and unfortunately through him constantly hitting it he now has virtually any eye sight out of his right eye. I'm hoping the diazepam gets him over this difficult period. I know from past experience the diazepam was the only meds that really helped him in the short term. Yes, I to hope this was a one off.

My son had a mental health breakdown last weekend at the care home, he hasn't been settled lately so it wasn't a complete surprise. This breakdown was very bad, he was hitting himself, hitting staff, and distroying his room, breaking everything he could and broke the t.v. in the lounge. This was the worst he'd probably ever been. As it was the weekend, there was no psychiatrist on call, a doctor came and did prescribe diazepam, but the situation was so out of control the police had to be called. Glen did calm down very late that Saturday night. The doctor said it did look like a breakdown, there seemed to be no triggers at all, it just happened so quickly and escalated. There was an emergency meeting held on Tuesday which I attended with the care home manager Mel. They asked her if she wanted Glen to be admitted into hospital, but Mel said no, we want to keep him. They are such a dedicated team at Glen's home he is very lucky to be around such wonderful, supportive, caring ladies. Mel also knows that the 2 possible hospitals that Glen could go into in the area where he is don't have the best reputation and she was concerned with who Glen could be put with. So I'm thankful that he is still at the home. Glen has been very quiet, in a low mood all this week and has appeared quited exhausted which isn't surprising due to last weekend. His appetite has returned which is good, but he remains in his room a lot of the time. I'm hoping he will soon feel better in himself. I have complete confidence in the staff to help Glen through this very difficult time. I am though very concerned that this could happen all over again.

Hi, I'm really sorry but I've tried sending you a private message but for some reason it just won't send, keeps coming up that I need to put more than 3 characters in, so I just don't understand it. Anyway, I will print the message on here instead:- "Hi I've just read your posting regarding your son. My son Glen who has a diagnosis of autism, challenging behaviour and mental health issues. He is nearly 20 and resides in a local care home. How old is your son?, when Glen was around 15 he wouldn't go to school, he became violent and extremely anxious and suffered with depression, he would hit himself and others with extreme force, Glen has always been a very anxious young man. I am sorry to hear what a bad time you have had recently. In my opinion your son needs to be admitted in hospital for a mental health assessment. Glen was sectioned in December 2012 and it was the best thing that could have happened to him. The hospital was very good, they put him on some new medication which helped him become much less anxious and much happier and settled in himself. Glen stayed there for 5 months and then he went to live in the care home he's currently in as I was unable to manage his needs. I think you should explain to your family how your son is and that he doesn't mean to say horrible things to them. He can't help it he just needs help. In my opinion if I were you I would really push for a hospital assessment, you have to think of your son and yourself, as a parent all you want is for your son to be happy and you would do all you can to help him. I cannot believe your son was taken to hospital but discharged. I just don't understand that the professionals did not see that he needed help. You really need to see the CAMHS team, go on your own, I did in the past when I couldn't get Glen to appointments, that way you can explain why your son wouldn't go with you, what I have learnt is you have to fight really hard to get help for your children, and don't give up until you have that help. As for your family, you need to talk to them, try to explain how your son is and that he doesn't mean what he says he's just crying out for help. You need to think of your son first and not worry so much as to what your family think. I'm sure they understand and want to see your son get better. If I were you I would not take your son to see your Mum on Mother's Day, perhaps your husband could just take your other son round. Anyway, I hope it's helped what I've said. Please let me know how your son is doing, I will say a little prayer for him and for you. Take care x

Hi, I think you are the only one that can answer this. I personally couldn't go into anything like that after looking after my son for 17 years, but everyone is different. I think being a support worker is a fantastic job I admire anyone who does this. Please let us know what you decide to do, and I want to wish you all the best :-)

Hi, the mobility part of DLA isn't affected, you will receive that each month as usual. As for the care component you will only get that for each day your child spends at home.

Hi lisa yes I do hope both our sons go back to normal soon but I do from past experience that for a couple of months after Christmas has always been a difficult time for Glen and for a lot of autistic youngsters. I do hope the next time I see Glen he will be more like his 'old self' again.

Hi Lisa, with Glen it is hard to tell if his eye could be niggling him, but the doctor did prescribe the anti-biotic drops which he has had before so he is having those now. His main appointment at the hospital has come through for the 10th of March. A thorough examination will be undertaking then so we will find out if there are any problems with his eye.

I did go to see Glen today, just a very short visit as agreed with the manager. When I arrived Glen was still out on a drive with one of the carer's. Glen and the carer Petra came back, I said hello to Glen he looked very anxious at me, thankfully no bruises on his face as I thought he might have due to him hitting himself a lot lately. Glen started hitting his face when he saw me and went straight upstairs and I didn't see him again. I felt a bit sad, but to be honest I wasn't sure I would see him at all as I thought he would probably be in his room. Another carer, Pam told me not to worry that Glen would get through this phase, she said he wants to be left alone at the moment and will only tolerate drives out, occasional walks then returns to his bedroom. Pam said Glen was better than he was, but he isn't doing any smiling at the moment! Pam was working at the home yesterday and today. The manager contacted a behavioural therapist who came on Friday to spend time with Glen and went out with him, which is good to hear. The manager was obviously concerned about Glen's behaviour, they think that Glen is going through a depressive phase which isn't uncommon this time of the year for him. It will just take time, the therapist will be making regular visits.

Hi Trekster, I haven't heard from the manager yet. Glen is 20 in April, he certainly has had growth spurts and has been going through puberty but not sure at nearly 20 this would still be happening?

Thanks Trekster. I may be going to see Glen on Sunday for a very short visit depending on how the week goes. Glen's main carer is going to keep me updated. I think I spoke to soon when I said Glen was a little better. As I've just found out at lunch time Glen started hitting himself which he does at meal times and it suddenly escalated very quickly and Glen's main carer got hurt, she went to A&E once a replacement staff member came to take over from her. I've been in touch with the manager and Glen's carer may have a broken finger, she's waiting to hear. After the incident Glen got over it very quickly, was calm finished his lunch and later went out for a drive it was as if nothing had happened and there has been no other incidents. That's how it was in the past when he lived at home after a very aggressive spell, Glen would just go back 'to normal' again. I await to hear how Glen's carer is. I heard from the care home manager last night and glen's carer has a broken finger and a fractured hand. I feel so bad for her, I feel it's my fault although I know it isn't. I don't know how long she will be off for. The manager is going to contact me today. Not sure if I will still be visiting Sunday or not now.

Hi trekster thanks very much for your reply it has helped me. I totally agree that most challenging behaviour in autism is due to hidden pain. I spoke to the manager earlier and she Glen clearly is unable to cope well at the moment so no demands are put on him. He is slowly improving, he has stopped hitting himself whilst out and is accepting that he has to get dressed before going out. Slowly but surely I guess. :-)

Hi guys, just wondered if any of you notices a change in your child/young persons behaviour at this time of year? Glen who had previously been so happy and settled in his new care home since May 2013, is now going through an extremely bad spell since Christmas. He has been very aggressive, hitting himself and staff, refusing to get out of bed, refusing baths, not wanting to take his pjs off. However staff have managed to persuade him to have a bath most days and have said to him if he gets dressed he can go out which is starting to happen over the last week. Clearly though Glen remains unsettled and we've been asked not to visit him whilst he's like this which I'm finding very hard as I haven't seen Glen since Boxing Day. This time if the year has always been very difficult in the past so I'm not surprised as to what is happening but had hoped as he is in the best care home of all the ones he's been in that he wouldn't have been so unsettled during this winter period. I would like to hear your views especially if anyone can relate to what I'm saying.

i agree with Mel, things do get better as our kids get older. This year at the care home Glen has coped really well, but they understand him and know what to do in not to overwhelm him at this time of year. They didn't give all glen's presents to him on Christmas Day, they gave him a couple a day for a few days which worked out really well and Glen had his normal routine of going out for a walk or a drive each day including Christmas Day. Thank goodness I've found a very good care home where Glen can stay long term :-)