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      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
JeanneA

One to One Time

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JeanneA   

Hi folks, hope you are all ok. Glen is coming home again this weekend and it's going to be a lot of 1 to 1 time for me and him unlike the last home stay. This time Glen won't be going to his dad's on the Sunday as it didn't work out very well last time I think he wanted to stay with me so this time he will be doing just that :-) Hopefully it will be a good weekend.

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JeanneA   

Ha Ha AS yes I hope the weekend goes well.

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chris54   

I would have thought he would enjoy spending the time with just you and not chopping and changing. I know there is a temptation to try and fit a lot in to home visits, but I imagine he will just enjoy being at "Home" with you doing home sort of things.

Best of luck.

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JeanneA   

Thanks Chris I couldn't agree more :-)

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JeanneA   

Yes it is a pic of Glen, taken at the care home in the kitchen whilst he was making a pizza :-) The pic was taken about 7 or 8 months ago now when Glen didn't like being shaved. :lol: Thankfully he's reasonably ok about being shaved now apparently.

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JeanneA   

Hi special talent, to be honest I don't plan anything as such other than what I know he likes doing at home. He does like going out for a car ride, which we do during which we pop to a shop so he can purchase an ice=lolly or chocolate bar with his pocket money :=) At home Glen enjoys playing with his magnets and also he loves threading beads, buttons those kind of things we both do it, have a box each with lots of coloured items in that we thread onto long pieces of string. We also put a puzzle together, Glen loves his puzzles. Colouring is another one of his favourites, we both sit at different tables (he likes his own space) and we each colour a picture in. Glen also likes going in the garden and having a swing and a jump on his trampoline.

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LancsLad   

Jeanne I couldn't agree more with what Chris has said.

 

I think in many ways you are creating a new version of your relationship with Glen, all the core features will be there just a slightly different change of emphasis. The difficult thing to recognise is that people in his new environment will be doing many of the things that you would have done with him and for him when he was at home full time. As I have said before I think that creates a gap in your life far more than it does in Glens. The tendancy is to rush in and fill that gap with activity due to strong emotional reasons on your part, and possibly his as well.

 

I think there will be a balancing period where both of you find your own space. I think the long term aim is for Glen to continue to see this as a coming home time, and not a visiting time for him. I think that for many parents we might not want our children to ever emotionaly leave our home. Sure we recognise that they will create a home for themselves and that might include their own new family, but we hope that they will always feel their is a place for them with us if they need it, they can come through the door and a bed will be waiting. If we are to achieve these types of parent son/daughter relationships then they need to be created with both parties strongly on a mature adult footing where we respect each others positions in life.

 

Though I do not know Glen personally I suspect this sort of position might be a little way off, but he will get there given the right sort of support. Jeanne I suspect this is the next phase of your parental journey, creating a home environment where Glen has the space in which to move forwards in expressing himself as a young adult. I am not saying this about yourself, but I think there is a big tendancy in these situations to grab our children back into the fold and mother them. In so many ways this might be so counterproductive in respect to what they a doing in the rest of their life time, hopefully they are moving on and there may not be that massive gap there which the parent wants to fill. By creating space for him you are also hinting strongly at the direction in which you want him to go and thats one of independance. Clamping down on that space is akin to saying if you do not want to grow up you can always come home and be a child here. Its difficult, tough love is never easy, and its a balancing act.

 

If think Chris's approach is very important in another respect and that is you need to have emotional space between yourselves when Glen comes home so you can observe how he is coping. He might have quite a regresive weekend and be very childlike, thats fine and understandable. He might also show changes in his behaviour which is the other way, by taking a bit more responsibility with routine tasks for example, it is important we recognise and comment on this if it happens. We work hard as parents, very hard at times, for what? I think a big answer is to step back and quietly observe our children and witness the progress they make in their lives, there is nothing more rewarding in life.

 

Take the opportunity this weekend to just enjoy each others company and catch up. Best Wishes.

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Yes it is a pic of Glen, taken at the care home in the kitchen whilst he was making a pizza :-) The pic was taken about 7 or 8 months ago now when Glen didn't like being shaved. :lol: Thankfully he's reasonably ok about being shaved now apparently.

 

 

he looks like a nice lad, slightly cheeky though lol looks like he could have a few pranks up his sleeve.

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Hope your weekend goes really well, you will have to let us all know how it went.x

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JeanneA   

Wow thanks so much to you all for your lovely comments but a particular thanks to lancslad. You sound such a very nice person on here you always try to help/advise etc everyone that you can and I know how much we all appreciate what you say.

Observe as both you and Chris have indicated is exactly what I will be doing this weekend, I have learnt to do that the last few stays realising how important observing Glen is. I am so looking forward to the weekend. :=)

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he looks like a nice lad, slightly cheeky though lol looks like he could have a few pranks up his sleeve.

 

That's exactly what I thought.

 

Hope you have a nice weekend Jeanne :)

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JeanneA   

Thanks darkshine, I will let you all know after the weekend. :=)

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JeanneA   

No I don't think so he wouldn't be able to do anything like that I'm afraid. His mental age is of that of a bout a 3 yr old. He is a 3 yr old in an 18 yr old man's body as I say!

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Is Glen a bit similar to the young man on that recent documentary with Louis Theroux? The one I liked who said "yeah" a lot - he was one of the oldest people with autism there and he seemed to like Louis cuz he kept smiling at him in the car and he loved to eat - but he was a big guy and when he got stressed he looked a bit intimidating - he lived in a place like Glen and came home for visits and stuff - do you remember the guy I mean?

Edited by darkshine

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JeanneA   

Hi darkshine, yes Glen is very much like the guy in the documentary and Glen also eats a lot :-))

Hi AS, Glen wasn't too bad over the weekend. Sunday was better than Saturday. Saturday he did seem unsettled and anxious and rushed through the day as he often did, he likes the evening times the best when he knows he gets his dinner and then can go to his room, watch a dvd and settle for the night.

On Sunday Glen was more relaxed and we did some activities together which he likes doing, like putting together puzzles, and playing with magnets. I was so pleased that Glen didn't go to his dad's on Sunday I think that's why Glen was more relaxed and less anxious when he realised he wasn't going there this time. So in all a good visit. :-)

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JeanneA   

Yes indeed it is looking foward to the next stay now in just over a couple of weeks time :-)

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JeanneA   

Thanks darkshine it did go quite well. :D Hope you are ok today.

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Glad it went well :thumbs:

 

I'm sitting here typing away and trying to catch up with my life as I've been otherwise engaged for the past week and I have a lot to do for things coming up in the near and slightly distant future so I could do with better time management (I really would do things better if I didn't get lost in things!!) I kinda look up from what I'm doing and realise that I lose day after day after day - pretty frustrating on one level - on another I am relived when another day has passed and I didn't have to fight through it waiting for it to be over - double edged sword I believe :)

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JeanneA   

Hi darkshine how's your Saturday been? Hope you've had a good chilling day. Has you time management improved? :D Try not to worry too much. Glen goes back to school (classroom in the care home grounds) on Monday so guess he could be a bit unsettled next week, he is better in the holidays. Looking forward to his next visit in 2 weeks time. Hope you have a nice evening. :bounce: :bounce:

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LancsLad   

Jeanne glad to hear things have been going well. I have been thinking about Glens situation for a while now since you described him as a 3yr old in an 18 yr olds body. Was not too sure whether to ask this or not but I will never get your perspective in things, something I value, if I don't so here goes.

 

In looking back at my own life and my Asperger's I can see that as a developmental condition I was always a few years or so behind a lot of my peers in respect to maturity levels. Even when I was away at university in my ealy forties most of my fellow students had me in my mid thirites so this might not be a bad thing, or it might be down to my fantastic youthfull good looks (only joking), but they did think I was young for my age. I can remeber back to my teens but can't get a grasp on my early years for obvious reasons. I have in the past few years related this to the classic concept of the 'seven ages of man' and that we might go through phases of our life.

 

What I am starting to see and I am sure you can relate to this in respect to your other children, is that my son now approaching his eigth birthday is starting to change a fair bit as if he is entering into the next phase of his life. He is starting to see thing in different ways and importantly what his position is in the world and how he relates to it, his mind is opening up in a big way.

 

Background thoughts over, my question is this. When it come to individuals such as Glen I understand that progress in their lives might at times come in very small steps forwards. But do you feel Jeanne that there is a point where this these small steps might lead to Glen going through a period where the change could be quite significant in respect to how he sees his own postition in the world and how he relates to it? I look at myself and think whilst I might be a few years behind the pace given a long life I still have the potential to possibly experience all the ages of man. Glen and other individuals like him on the other hand because of the developmental issues they face will not have the same potential as me that is unfortunate. But where do you feel he can get to? In thinking about the question I have suddenly in the last week become so aware of how few reference points I have in respect to adults on Glen's part of the spectrum its as if they are absorbed into a secret part of society that very few people get to see and I find that very disturbing. I am kind of questioning why a subject such as Altzheimers can be pretty high profile in the media because there is a fear that any of us might have to spend the last few years of our life in this way, yet there seems to be generations of people on the spectrum out there who barely get a thought, but face similar issues every day of their lives. In some ways AS is fashionable at the moment so I might get a bit of a look in for the time being maybe its time to defelect some of that attention towards some of the other, possibly less fortunate colleauges on the spectrum.

 

Just a few thoughts, welcome any responses from anybody, hope this was not too personal Jeanne but the picture you have put up of Glen has acted as a real catalyst for me wanting to work this one through in my own mind even if my thoughts are a bit clumsy at present.

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chris54   

2 of the adults I work with are in there 40s have ASD. Its not something we realy do but if I had to put a developmental age on them it would be something like 5 or 6. If I am honest, as much as it is the intention that they are working towards independent living, it is most likely the next phases of their life will be old age. They will progress from the residential home they now live in to a old people's home. Both of these individuals lived with their parents untill there parents could not cope any more.

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JeanneA   

Hi lancs lad and Chris. I have to admit that I can see Glen being like the 2 people Chris has just mentioned in the care home he works in when Glen is of similar age.

 

Obviously I can't be sure at this point as Glen is only 18 but as to your question lancslad of the fact that Glen maybe able to relate to his own position in the world, I honestly can't see it. I could be proved wrong and believe me I would like to be but I just can't see that happening. There's been a lot of professionals involved over the years and more so in the recent 2 or 3 years and they've all come to the same conclusion that Glen will always need 24 hour care, will never be independent and will always have a young 'mental age'. I except their professional judgements and agree with what they've said as I came to the same conclusion a long time ago. As I've said though it would be good if we were all proved wrong by Glen. :-) I really don't know where he could get to at this point in time.

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LancsLad   

Jeanne thanks for your honest response.

 

In many ways I to hope the professionals are wrong. If for example as an arbitary figure it takes around 10 years for someone in Glens position to achieve around a year or a year and a half mental growth in respect to some elements of mental processing if my loose seven ages of man concept is valid it may only be at the age of around 60 or 70 that individulas such as Glen might have the potential to transition into another phase of their life.

 

I can see that traditionally many professionsals might look up to the age of 30 or even 40 and say there is no real signs of progress there and draw the conclusion that in some aspects autistic individuals on this section of the spectrum will make little or no progress. My concern is if the perception in every primary classroom and home was kids don't progress mentaly beyond the age of say 4 then it would be a pretty poor learning environment in respect to expectations, and whilst they would make progress they would not be best supported.

 

My own belief would be if that after years of effort given increasing life expectations about how long we will live for if a few individuals even by the ages of 70 or 80 make a significant step into a new phase of their life then that would throw an entirely different light over the whole process in the fact I believe there is something very worthwhile achieving. I can look at my own life and what I know about that of other members of the spectrum and can see from my position at the 'high functioning' end (not my words) that it is very fluid. Whilst things at the other end of the spectrum might be compressed and appear to be far more rigid, is this the case and conditions are fixed or do the same rules apply simply time frames are so much larger and difficult to comprehend in respect to some elements. If the rules are pretty constant then the concept of a coherent spectrum is valid.

 

My final thought is that if resources are limited and we are to go with a concept that you should earn the right to these resources then I believe parents such as yourself Jeanne and the people who look after him in his care home and others such as Chris are highly deserving of those resources for the effort you all put into people like Glen on a daily basis. Whilst resources related to his support are secured and rightly so, what I am thinking about are resources allocated to research and developing new concepts regarding teaching developmental skills. If I was in the position to rule the world for a day and pass any enforcable law, then I think it would be that every individual on the planet has the right to a childhood. For me that would include the right for someone such as Glen to see himself in the same way my son does and that is he feels he is growing up in a big way at the moment as he moves away from a lot of the elements of his early life, his favorite TV programmes, favorite foods, teddys, this week has made the decision to move onto the top bunk as his new bed, in other words he feels he is a 'big boy' now. I kind of find it very sad that this feeling of 'I am a big boy or girl now' might come at a point in an individuals life when they are moved into a care home for the elderly, surely they deserve an environment which is age specific in respect to their mental capabilities and not age supressive?

 

As a last thought has an individual such as Glen ever developed Altzheimers or would we have to wait untill medical advances have been able to keep a body going to the age of 300 before that sort of thing could happen.

 

Just a few thoughts thanks for your comments best wishes to you both, hope your back didn't spoil your holiday break too much Chris.

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chris54   

As I understand it the onset of age related conditions happens at the normal chronological age and may even occur sooner for these individuals. In general people with more severe learning disabilities have a shorter life expectancy than the norm. This is at least part explained by the fact that they often have other health issue. And I suspect that in the past little attention was paid to their general health.

 

Funding, 2 years running the LA have reduced the funding. We have had to accept staffing reductions. There is a big reliance on good will of the staff to keep things running smoothly. Many of the staff are actively looking for better paid work. The LA are always reviewing the residents with a view to moving them to cheaper accommodation. There is a rush to move the older ones to Old people's homes ASAP as they are funded to a much lower standard. The residential home arm of the company is at the present time making a loss, it is only by diversifying into other areas of care that they have kept going.

 

We do not feel that funding is at all secure for our residents.

Edited by chris54

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chris54   

Health. We have a case of one of our resident who has severe Downs Syndrome, He has the ability of 1 year old (In all aspects of his life). He needs surgery to correct a life threatening condition, and to elevate constant pain. The doctor at the hospital said it was a waste of resources to treat him as his quality of life could not be measured, therefor would not improve. It was only with the intervention of his social worker that surgery is now to go ahead.

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JeanneA   

Good to hear back from you both. I agree lancslad I to hope the professionals are wrong and that Glen progresses more than everyone seems to think he will time will tell. Thanks for your very kind words Lancs regarding us being highly deserving of the resources. It doesn't always work out that way though sadly as Chris was saying.

 

It is very sad to hear your funding has been reduced Chris over the last 2 years and this is a fear I have for where Glen is. I do not want him moved to a cheaper place where he may regress and be unhappy. It's took nearly a year to get him to where he is at now, being more settled, less aggressive and more co-operate generally. The staff at the home are brilliant with him. It is always in my mind that they will try and move him more so once he reaches 19 and his education will then cease. I think he is fairly 'safe' where he is until then which is next July 2013, but nothing is definite of course.

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LancsLad   

I think sometime when we are facing some issues of our own it is important to think of others who might not be as fortunate as ourselves. I have spent a few days contemplating where AS and the autistic spectrum fits in my life. Sometimes we can think life is not fair, but if we look beyond our own situations we can get a real perspective of what is fair and what is not. Jeanne thanks for bringing Glen to my attention through this forum and Chris for being honest about the realities of the individuals you work with, it brings things into perspective for me.

 

Thanks.

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