JeanneA

Thanks very much for your comments.

Hi, I just wondered if anyone else had experienced their child suddenly at 21 seemingly thinking they are back in the past, i.e. saying things like: 'I want respite', 'I don't want School'. Glen for the past few months has been saying these things and getting very upset when saying 'I don't want School'. Glen's school days were very unhappy times for him so I can understand why he would get upset, but when he speaks it sounds like he thinks he's in the past again.

Glen is getting on much better, he is now going out for short walks and also drives. With staff encouragement he has been getting dressed every day for about a week now which is fantastic. On Sunday I accompanied Glen and staff to the General Hospital as Glen had an appointment to have an MRI scan. It went really well, now awaiting the results.

Yes I agree I think bubbles are very calming :-)

Thank you Sally. I rang this afternoon and Glen had a really good morning. They managed to encourage into the garden, where staff were blowing bubbles from the bubble mixture I took in at the weekend, they said Glen really enjoyed it. I remembered from the past that Glen loved blowing bubbles and watching others, it's little steps as they say!. I'm going to see him again on Saturday.

Thanks for your replies, really appreciate your kind words. I feel so sad for my boy, why is life so unfair? I so hope this time he does get the help he needs so that he is happier in himself and starts to enjoy life again.

All these are being looking into, Glen has self harmed so much that he's possibly damaged inside his ear and the ENT will be coming out to Glen at the hospital. Glen already has damaged his eye he had a detached retina, he has hardly any sight out of that eye, so he is very light sensitive.

Thank you very much. The hospital are looking into how they can help regarding his wellbeing, a MRI has been mentioned, so we'll see. The manager and staff of Glen's care home are going in daily working with the hospital staff. The manager is willing to make possible adaptions to the environment if Glen goes back there.

Sadly on March 29th Glen had to be sectioned under the mental health act for a second time. Glen's behaviour had deriorated over a period of time he had been isolating himself in his room for around 9 months and on March 28th his behaviour escalated out of control, he was extremely violent to staff and himself and they could no longer manage him, he went in an ambulance to hospital, the first time he'd been out of the home since October last year. It is early days, Glen is still isolating himself in his room at the hospital but staff are getting him up to the dining room for all his meals which is an improvement as he had been having all his meals in his room at the care home for months. He has also gone outside in the court yard briefly, which to me is fantastic, little steps as they say. My husband and myself are going to visit Glen tomorrow.

Yes, most definitely.

It's very interesting to hear that the early 20's is a difficult time that would make a lot of sense then, I had hoped though by this sort of age that things would be better but obviously I'm wrong.

Hi Paula I think it makes you feel better when you write things down on forums like these, that's what I've always felt. It's nice to know you are not alone and that myself and I'm sure a lot of other parents can relate and know what you are going through very well. x

Hi Paula, so sorry to hear what you are going through, I'm going through similar although my son Glen who is nearly 21 lives in a care home and has been there for about 20 months. He has taken to staying in his room, laying in his bed, won't get dressed, won't go out. He is mostly non-verbal, he can speak but choses not to. Glen is on the severe end of the autistic spectrum and has mental health and challenging behaviour. I'm concerned that the home isn't motivating him, but he is calmer when left alone, which is why they aren't putting any demands on him, I do have issues with this however. When Glen lived at home with me I would always try to motivate him, sometimes it worked and sometimes it didn't. It's hard to offer any advice to be honest, as you are trying to motivate your son but as you say mostly this doesn't work. Is he aggressive or destructive at all? My son is although he has been better recently with the odd incident. I presume your son is verbal? if so at least you can speak to him and ask him what's wrong, or perhaps ask him what would he like to do. Perhaps you could get him to help you in some way in the house or garden, does he show interest in either? Other than that I really don't know what else say other than I can relate to you even though I am not my son's full time carer anymore. Another thing does he attend anything during the day? Thinking of you and hope things do improve sooner rather than later. x Please email me anytime.

The manager of Glen's care home rang me yesterday afternoon saying she has told the social worker that they have exhausted all avenues with Glen and don't know what else to do and wondered if he would be better somewhere else. I am worried about 'another move' for Glen, he's mental health is fragile as it is and I did say this to her and I think she hasn't ruled Glen out staying there it's just they are frustrated that whatever they do they can't seem to help him. Also she told me there was an incident on Sunday afternoon, when Glen started hitting himself with great force, ran down the stairs and out the front door (they don't keep it locked during the day). He ran down the drive and nearly into the road, staff went after him and managed to get him back into the house ok. I was so worried to here this though, he could have been run over which is what the manager said, she's had to report the incident and also asked if they could be allowed to lock the door in the day. I don't know why you have to get permission about locking the door, why can't you just lock it? If something had happened to Glen it would have been their fault wouldn't it? They also don't know what triggered this, I did ask if something had upset Glen but they didn't seem to think so. Someone asked me what Glen has in his room, he only has a bean bag chair with a few soft toys on it plus I brought in a couple of small bean bags that you feel/play with and a sensory toy. Back in May/June last year when Glen had a major meltdown, he through all his things out of his room and broke some of them. When Glen became calmer again they tried putting some back and he again threw them out, so they haven't tried since. Glen did do this when he lived at home years ago when he was much younger and I did manager to put some back with success. They don't seem to want to try again. I definitely feel that wearing pj's all day plus having all his meals in his room and doing nothing is definitely now routine to Glen and trying to change this isn't going to be easy. I do wish staff hadn't have allowed Glen to have all his meals upstairs, he has no reason to come down anymore, although he does come down the stairs when he wants something to eat and takes it back up to his room. Whilst speaking to the manager I did say yet again about trying Glen with one activity a day just to see how he reacts, and all she would say is 'we've tried that' but what she really means is they're tried a couple of activities just once and it didn't work out, one was a puzzle which he threw at the carer. They need to try an activity for a week, persevere with it, but they don't seem willing to do so. The manager also thinks Glen is going through a mental health breakdown, as she has knowledge of mental health isssues because she worked in that area years ago before she became a care home manager. However she said he isn't bad enough in her opinion to be sectioned. Glen has been sectioned before. Perhaps a complete change of care home is needed, my concern is though would after a few months would Glen's negative behaviour return again? It is a hard decision to make. Although it might be made for me if the manager definitely says she does want Glen to move on. How they would get him to somewhere else I don't really know because he won't go out at all with anyone including me

I do hope you start to feel better in yourself soon, is there anything you can do to take your mind off things? perhaps a special interest you may have. x

Hi I'm so sorry to hear how you are feeling. I just feel for anyone in this position that they feel so low that they want to be on their own and have no motivation to do anything. Have you thought about asking your GP for a change of medication? It maybe that you need something different. I guess you can understand more why Glen seems to want to be on his own then. Unfortunately Glen can't express how he feels. I do hope you feel better in yourself soon.

Thanks for both your comments. I agree that lack of stimulation is not good at all, I've been trying to get this across but no-one seems to listen to me. I think they are just definitely containing him and thats all. I do not know if he dislikes anyone there. As for the residents there is one who lives in the main house and he's bedroom is on the same floor as Glen and he is quite noisy, can't speak but makes noises, he started living there after Glen had moved in. There is nothing Glen likes doing apparently, all of his things are in the shed anyway since he didn't want anything in the room anymore so he hasn't got anything in his room even if he did want to do something. I keep asking for one item to be placed in his room but no-one listens to me as I've said. Glen's meds have changed over the past few months, with the latest change quite recently so that might be making him more tired as he seems to have been very tired since Christmas,but his anti-depressant still hasn't been changed, I keep bringing this up as he's been up it for a few years now and it obviously isn't helping him, I think it needs to be changed to a different one. Glen is on a mood stabilser medication which was changed recently its called sodium valproate. He also has diazepam which was increased recently also and I'm wondering if this is what is making him so tired. I feel very sad every day, thinking of Glen in that room with nothing to look forward to. Like you said how long are they going to let Glen just lay in bed all the time, I wouldn't be allowing this if he was living at home. I always encouraged Glen to do things.

Hi, thanks so much for your comments it is so helpful. I'm so sorry to hear you are feeling depressed does it make stay in bed and not want to do anything? Have you been in contact with your doctor to ask for help?

Hi Sally, thanks for your comments. I do not know if Glen is happy or not to be honest. Sometimes when I go he seems relaxed and happy other times he looks anxious and is agitated. Every time I bring up about the staff trying to get Glen just to do one thing a day, take things slowly I always get the same answer: 'we don't want to put any pressure on him', we don't want him getting upset/agitated. So I decided to ring social services and voice my concerns and ask for a meeting. After putting pressure on them, I have now got a meeting date of the 2nd of February, ideally I would have liked it sooner but at least I have a date. I wouldn't say that social services have been helpful, in fact I get the distinct feeling they are on the care home's side, it's just what I've picked up on. The social worker is new so doesn't know Glen at all, which doesn't help. I brought Glen up for nearly 17 years, I know him better than anyone but no-one seems to acknowledge that which is very frustrating when all I'm doing is trying to help. No, I don't think the camera idea would work as Glen would probably try to brake it as he has done most things in his room, he's even stood on his bed and tried to brake the ceiling light, I think they had to change it somehow. Glen could be depressed I have thought of that which is why I want to speak to the psychiatrist at the meeting. Glen refuses to go out, hasn't been out since the 22nd of October. He won't even go out with me, I had been going over every couple of weeks and he was going out with myself and a carer but he then started not wanting to go anymore, which is a shame as I felt I was doing something by getting out when staff couldn't. I am so worried about him, everything was going so well in the first 8 months but most of 2014, hasn't been good.

Hi, thanks so much for your comments, nothing has changed recently apart from a couple of members of new staff but they have been there a while now, so I really don't think that is the problem. No re-decoration either. I just hope by having a discussion at the meeting about strategies regarding Glen will help. At least staff do massage Glen which helps particularly when he is feeling anxious.

I just wondered if an autistic youngster was in a similar situation as my son. Glen has been in his current care home for 18 months. The first 8 months were very good, Glen was very active; going out for walks, shopping, going for car drives preparing some food in the home for himself etc. However for the last, I would say 8 months at least Glen has lacked motivation and refuses to go out and just stays in his room, mostly laying in his bed, only gets up for a bath and occasionally walks down the stairs. He doesn't go into the lounge anymore. Glen has all his meals in his room, staff have let him do this months ago which I disagreed with and still do because I feel it makes him more isolated, I think they should have insisted he came down just for dinner perhaps it would have been something. Glen wears pyjamas all of the time, he will not get dressed. I think perhaps Glen is going through a sensory issue stage so I can understand him wanting to be on his own but feel staff should try to motivate him in a small way. When I ask staff and the manager about trying to get him motivated into doing something all they say is we cannot put any pressure on him. A few months back Glen had an extremely aggressive spell when he damaged the property causing £4000 worth of damage, and he also hit himself and staff with extreme force. So I can understand their reluctance to 'push Glen' but he's now been relatively calm for quite some time and they still won't try to get him to do anything. What do you think? Am I worrying unnecessarily? I just don't think it's good for anyone to be left with nothing to do all day. Glen hasn't got anything in his room apart from a few soft toys and a bean bag type chair as he threw everything else out of the room during the time when he was very destructive, and they haven't put anything back. I think they should put one activity back in his room just to see if he shows any interest in it but whatever I say they seem to disagree with. I have asked social services for a meeting and this keeps getting put back for various reasons, I have just heard the meeting is going to be on the 2nd of February. The only positives are the fact I know he is being looked after well and no harm would come to him. I would so appreciate your comments. Thanks.

I've sent you a private message Soraya x

Yes do let us know how it went.

I just want to echo what Mel has said. Hope all goes well please let us know. Every young person is different and you know your youngster the best so I'm sure will have it all organised. I bet you will be relieved once it's over.

Hi Lisa, it's very true our young people need someone they can trust, they know well, who will always be around until sadly they are not here anymore, so who better than their Mum and us Mums need to keep the service providers on their toes. I feel getting more involved is a good thing, I'm pleased that with my help we got Glen to the hospital the first time he'd been out for over 8 weeks and he's been going out nearly every day since, I went out with him on Tuesday for a drive with his main carer, unfortunately Glen wasn't having a good day so wasn't as happy as previous weeks but he did settle during the drive and we were out over an hour which is very good for Glen. I am going again next Tuesday, I go when I can, I do work as well part time so I fit it all in. Glen's still very 'up and down' but much better than he was during those long 8 weeks when he was in all the time.