oxgirl

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

Didn't you say that the staff have a chart that they point to asking if Glen has any pain? Do they not have a picture of his mouth or teeth that he could point to to indicate tooth pain? Maybe they could include that from now on. ~ Mel ~

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 ~

Sorry to hear you're feeling low, Gold MD. It probably is for the best that you will be working with another key worker, maybe you had become too attached to the previous lady and this isn't always healthy. Try to look on it as a move forward onto new things and you will soon get over her, hopefully. I'm sure you are attractive to many women, but it is not easy meeting people. I wouldn't take it too personally and just persevere, meeting lots of new people until you find a relationship that works for you both. It could take time, but try to be patient and not get too upset when women aren't positive as they are looking for sometime particular too and just because you aren't right for them doesn't mean you won't be right for lots of different girls. Good luck and try to stay positive. ~ Mel ~

Detached retina usually follows what are called floaters; the jelly at the back of the eye pulls away from the retina and you start to see black blobs floating in the field of vision and sometimes flashing lights. It could be that he sees black floaters and has flashing lights, which annoys him and so he hits out of frustration. Sometimes when the jelly pulls away it tears the retina, which then needs to be repaired. There isn't much they can do about the floaters though. I have them and they can be very distracting, sometimes like looking through a black net curtain and they move about as you blink but they are inside the eye. If it is the floaters and flashing lights that is causing him to hit his eye, I'm not sure what they can do. ~ Mel ~

The most frustrating thing must be not knowing what the trigger is for Glen's periods of unhappiness. If you could only know what was upsetting him it could be addressed. Is he able to communicate at all if he is in pain or discomfort or dissatisfied about something or does he just tend to lash out? If he has limited vision in one of his eyes could he be hitting it because he is frustrated that it is not working properly and he's not seeing from it clearly? Could they correct any of his vision with glasses? I know that sounds even more dangerous, but maybe if he was wearing glasses over his eyes he would be less inclined to hit them? Hope he's entering a settled period now. ~ Mel ~

Will he wear a protective helmet do you think? Some protective gear is like what boxers might wear and so would include padding around the eyes to protect them. If he were to be persuaded to wear it then when he hit himself at least there would be cushioning around the eye to give some protection and take some of the force. You might not like the idea of him wearing this head gear, but even if it was for a short period it would give the eye a rest and time to settle down and heal. Sorry to hear that this problem has recurred, Jeanne. ~ Mel ~

Hi Beebee, I can relate to this. My lad is 20 and left his college course in November as it wasn't right for him and he was miserable. I was terrified at the thought of him leaving and being out there in the big wide world. It took a while, but we managed to get him settled into a routine of helping out at charity shops. It isn't a long-term plan but is increasing his confidence and making him feel more settled. Like you, I was horrified by the idea of him being in his room on his own 24/7. We still have a long way to go before he'll be ready for a job I think, and it is a scary road, I know. Would your lad be willing to volunteer? It is something to put on his CV at least and would get him into a routine and get him out there interacting and meeting people at the very least. It will also take the pressure off him because maybe he'll feel he can settle into a routine of this for a while without the prospect of having to get out there and look for work being so much of a pressure on him. ~ Mel ~

Great news, bjkmummy. Well done to you for all your hard work and I hope you get exactly what you need for your daughter. All the best. ~ Mel ~

Could you ask your GP to write a short two line letter with no personal info in but just stating the facts? You can get cards from the NAS saying 'this person has AS ...., etc' you could show people or else they produce leaflets that give a bit of information about AS. That isn't actually 'proof' as such, but if they need you to prove you have it, I guess they'd need to contact your GP or consultant. ~ Mel ~

You're very welcome. Good luck with it all. ~ Mel ~

Walking the dog sounds like a great idea, getting into a routine and getting some fresh air and exercise will hopefully make you feel a lot better in general and more able to cope with the difficult times. All the best. ~ Mel ~

Hope your official diagnosis helps you and glad it came through without you having to wait much longer. I must admit, I'm always quick to complain too, but experience has taught me it's always worth just taking a breath and giving people a bit more time before I lumber in there and ruin relationships, which I'm pretty good at doing! All the best. ~ Mel ~

I wouldn't rush into complaining just yet. It might be worth waiting a couple of weeks more for the report to come and then, if you feel you haven't got satisfaction or the result you want, then contacting him with your concerns. If you rush to complain before he has finished the report it might influence what he says and it's always good if we keep positive relationships with professionals, even when we feel let down by them. I know from experience that I have complained in the past and it has always come back to bite me in the butt, because at the end of the day these are the people with the power to say what they want and they are the ones usually listened to and respected. I know it's annoying and it sounds like he didn't give you the time you wanted or needed, but he could have got all the information he needed in less than an hour and so still might come up with a comprehensive report which gives you an outcome you are happy with, so I would give him a bit more time. Sometimes things do come along and happen, even to doctors, so I guess you could cut him a little slack and it could benefit you as well not to go piling in with criticisms before you've seen the results of his work. All the best. ~ Mel ~

Sorry it's been worse recently. I think it does become a vicious circle, when we have a bad experience we are on edge waiting for the next one to come and end up feeling anxious and wound up even when there isn't a problem because we're anticipating one will start. Do you get out much and do you have places to go to get some respite from it? Just going out for a walk can break the cycle and stress sometimes. Try to hold on to the fact that it won't always be this way, things change and nothing lasts forever, the daughter might move out sometime soon or go off to uni or something and peace will prevail. Then you'll be able to look back on this as a difficult period of your life but one which has come to an end. ~ Mel ~

My lad will use public toilets in shops and shopping centres, but will only use cubicles. He won't use urinals and I think he still sits when he wees! He's 20. Sometimes in mens' toilets there is only one cubicle and lots of urinals, so can be a problem. Sometimes he's in there ages, waiting for the one cubicle to be free. When we recently went to the theatre they only had urinals in the mens' toilets and he couldn't use them. We found a disabled toilet in the lobby and he snuck in there instead. He is the opposite to your lad, in that he has an anxious bladder and needs to go frequently so this can be a problem when we're out and about. ~ Mel ~

Good luck tomorrow, bjkmummy. All the best. ~ Mel ~

Of course, if it's the smell of his own urine that he doesn't like, explaining to him that if he dilutes it by drinking lots then it will smell less strong could help. ~ Mel ~

Don't forget though, Frances20, that this is a two-way relationship. You are not his carer, you are an equal partner and both your needs are as important as each other. He should also be doing some giving to the relationship rather than you doing all the compromising. At the end of the day, if you are both happy and learn to work well together then that is great, but don't forget you have your own problems that you need support with as well as offering support to him and his. ~ Mel ~

I think it's important to have a 'plan B'. What I mean is, I am a very focussed person and I like to plan what I will do and where, when, etc. Especially when I was younger, but still now even, I find it hard to cope if my 'plan' is disrupted for some reason. So, if you are planning to do something in your room and it is suddenly 'spoilt' as you say, because of the noise, it could help you to have a plan B to go to instead. That way you perhaps won't feel so frustrated that your plan has been disrupted because you can then go on and do the plan B thing, i.e. going out for a walk or going to a different room to do something else, etc. This way you may feel you have more power over what you do rather than being forced to do what the neighbour dictates. Does that make sense? It's all about feeling in control yourself and having power yourself rather than having that control and power taken from you by outside influences, that's what causes the anger and frustration. ~ Mel ~

If he isn't drinking much then his wee will be much more concentrated than it would be if he drank a lot, so it will sting much more when he wees so this could be causing a vicious circle. He is old enough to understand the 'science' of it so perhaps you could explain that the more diluted his wee is the less it will sting, which might encourage him to drink more? Worth a try. Or you could set up a timetable, writing down times when he will have a drink. My son is very routine-driven when it comes to food/drink, so he has snacks at certain times of the day no matter what plus his normal meals at very set times. Perhaps if your son got in the habit of having snacks at certain times, biscuits with a drink, and he can see this written on a timetable maybe he'll accept it more? Maybe encourage him to drink a glass of juice before he has the biscuits as an incentive. Are there particular drinks he prefers? Will he eat stewed fruits, yogurts, custard, things like that so he is getting some liquids in other ways, maybe soups? Milkshakes or smoothies? ~ Mel ~

My son had a fear of the toilet at school. It started one day when he went in and the urinal suddenly made a very loud sucking noise that he wasn't expecting and had never heard before. He ran out in a panic and refused to go in after that. Any attempts to persuade him failed and he was allowed the use the girls toilet after that (he was only 5 at the time). He also had sensory issues which meant he did not recognise when he was hungry and thirsty. He wouldn't drink unless told to and never asked for food or drink. Is your son thirsty but just refusing to drink or does he not recognise his thirst, do you think? Or do you believe he is not drinking so that he won't need to use the toilet? When he is at home and presumably comfortable using the toilet does he drink normally or is he still reluctant? I would try not to focus too much on it but would monitor it. Does he get his own drinks or do you get them for him? Have a quiet, relaxed day at home and leave drinks available for him to help himself to. Take note of how much he decides to drink on his own. I'd also do the same with the loo, see how much he goes to the loo on a quiet day at home. ~ Mel ~

I feel your pain, really I do. Is there a pattern to their noisiness have you noticed? For your own sanity, if you knew they were likely to play music at a certain time, perhaps you could arrange to go to the library at that time just to stop you feeling like a victim. I know how easy it is to get worked up about this. Is it possible that you are extra sensitive and now notice every noise even more, even the normal day-to-day ones? I know that I am over-sensitive to dogs barking and I can get quite worked up about it. I then focus on the noise even more and can't think about anything else until it stops. The thing is, some of it is my problem, I know this, in that it is normal for dogs to bark now and again and most people don't care about it. I have to work hard sometimes to distract myself from focussing on it and if I can't I'll go out. Maybe your neighbours really do believe they aren't being unreasonable. Do you think the slamming doors and loud voices you mention could just be normal for them, in that they are generally loud people and not doing it to specifically annoy you? If you can accept in some part that they are just ignorant and noisy people and not out to be malicious to you personally, then perhaps you won't feel quite so bad and won't feel like they are 'getting at you'. It could be easier for you to accept that that is just how they are and not feel persecuted by it. I would feel worse if I thought someone was doing something deliberately to upset me but could accept it better if I knew they were just ignorant! Annoying as they must be, it would be good if you could find a way to work around it as best you can, sometimes we can't change other people but we can change ourselves. Hope that helps. ~ Mel ~

I'm so sorry to hear about your problems with your neighbours, Tsukimi. I myself have experienced this and I know what a terrible impact it can have on one's health and well-being and sense of peace. I became quite ill and, like you, was tense every time I left the house. It was worse as I was coming home, as I approached the house I would become tense and anxious and it was a terrible time for me, so I really sympathise. I used to scream at the top of my voice at the neighbours dogs, who they would leave alone for hours on end barking madly, I was going literally insane! I would start keeping a written record of all the problems you have with your neighbours from now on. Be realistic though, only list the instances where the noise they are making is unreasonable rather than day-to-day noises. Keep on at the Environmental Health people because they should be there to help you. Don't take no for an answer and in a couple of months, when you have built up a list of noise issues you have suffered in writing, make them come round so you can show them and discuss them. I know it is hard, but is it possible to have a mediation meeting with the neighbours? If they feel more friendly towards you they will make more of an effort to keep the noise down for you. I know you get angry, I used to steam and boil inside, but could you make a habit of being overly friendly to them when you see them, deliberately smiling or talking to them and getting to know them a bit to lower their aggression towards you, or perhaps your parents could try this? I hope you can find a solution, but do discuss with your parents how bad this is making you feel and what an effect it is having on your mental health. Take care. ~ Mel ~

It's a shame that you don't feel supported. I guess it's always going to be the case that people here only really hear part of the story and don't get to know all the facts, only you can know them. People just comment on what they know and that isn't always the full picture. Wish you and Dan all the best for the future. ~ Mel ~