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Carers UK Forum • Introduction,new member
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Introduction,new member

Posted: Sun May 04, 2014 4:17 pm
by Hazel
Hello, just to introduce myself. I am retired from a long career in a public sector organisation and now support my son full time. He is a young adult who suffers from acute anxiety,OCD and social phobia and as a result rarely leaves the house.
I have tred to get him support from doctor and social workers, but he will not engage with them and depends largely on myself.
I worry about what will happen to him if I am no longer able to support him. Are there any carers out there in similar circumstances and do you have any advice? best regards to you all.

Introduction,new member

Posted: Sun May 04, 2014 4:23 pm
by no1mum
Hi Hazel and a warm welcome to the forum.
Have you had a carers assessment to try to identify your needs as a carer?

Introduction,new member

Posted: Sun May 04, 2014 4:23 pm
by Scally
Hi Hazel,
My cousin in Oz has two adult children with similar problems who are almost housebound - though Asperger's may be implicated, proper diagnosis is very difficult, isn't it?
This is an interesting article about social phobias in Japan: As many as a million young people in Japan are thought to remain holed up in their homes - sometimes for decades at a time. Why?
http://www.bbc.co.uk/news/magazine-23182523

Introduction,new member

Posted: Sun May 04, 2014 10:47 pm
by Melly1
Hi Hazel,
and welcome.

Melly1

Introduction,new member

Posted: Sun May 04, 2014 11:27 pm
by jenny lucas
What a difficult situation, and it's so, so hard to be a mum when you see your children suffering - I do feel for you.

May I ask though, whether your son communicates via the Internet (Face book etc) or whether he truly is completely isolated from everyone else (except you?). Does he do online gaming at all (eg, when he has a fictitious 'persona' as most gamers do).

I ask this because if the answer is yes to some degree of communication with others via the Internet, this would show that he is capable of interaction with others, but 'at a distance' or 'one step removed' so to speak (eg, via a 'persona'). I would say this is a positive sign, and something perhaps that could be built on for the future.

Indeed, there may well be forums for people with exactly the problems that he has, and they may be other avenues to be explored in terms of 'luring him out' of himself, and his house.

In a way, though, and I'm NOT trying to trivialise his condition, ALL young adults have anxiety and social phobias (OK, maybe the very, very self-confident ones don't, but I doubt it deep down!). So perhaps he is simply an 'extreme' form of 'normal for his age' ???

Self-confidence is very, very slow to build in some people, and I know, for example, I've seen my own son (now 20) develop it almost in 'slow-mo', little by little.

May I ask, brutally, how he 'lives'? ie, is he working (I assume not??), is he drawing some form of disability allowance, are you keeping him financially (as well as housing him)? I know this may sound like 'tough love' but to an extent - and again, I say this VERY cautiously, and NOT trying to trivialise his problems - but one way of thinking about him is that he is the way he is because he CAN be! I'm not saying 'oh, chuck him out of the house and let him fend for himself' (!) but there is an argument (possibly a completely wrong one, I acknowledge that!) that says 'over-protection' (natural and 'instinctive' though it may wel lbe on your part!) may only perpetuate his condition????????

The awful thing is, speaking as parent of a young adult male myself (and having been married to a man who was probably on the Asperger's spectrum, especially when young), we just want them to be happy, and we bleed when they are not.

As I say, please don't think I'm trivialising what may indeed be severe mental/medical problems - but they may also (I hope) be tractable and bring-out-able and treatable.

Finally, was he always this withdrawn, or has it increased since adolescence and the arrival of the acute self-consciousness of the teenage years?

All the very best to you - and to your son - kind regards, Jenny.

PS - I take it he has no siblings or friends to help? Is his dad on the scene at all, and if so, can he help?

Introduction,new member

Posted: Mon May 05, 2014 8:48 am
by JHR57
Welcome Hazel, I care for an elderly Mum with dementia and previously a post stroke Dad but we do have a gorgeous little nephew who was eventually diagnosed with Aspergers and whilst he is fine at the moment we often wonder how he will cope when he becomes a young man instead of a little boy but like the caring with everyone else things are taken very much a day at a time.... hope the forum helps you it has certainly helped me especially in times of intense stress the folk here understand more than the folk on the streets who don't have a caring role xxxxxx

Introduction,new member

Posted: Sat May 10, 2014 12:15 pm
by Hazel
Thanks, Jenny for your thoughtful reply. My son's Dad does see him regularly and also encourages him to get out of the house but with limited success.
My son does spend a lot of time on the internet and on computer games (as I know many young people do) and I definitely feel this has encouraged him to be withdrawn from social contact over the years as he feels more comfortable using this media.
He has lost contact with school friends etc., If there was a forum which he could access to speak to people with similar condition it would certainly be worth a try, at least he would not think he is the only person with his problems, is anyone aware of such a forum??
He is a very strong minged chap and will not be forced or easily talked into things so helping him is difficult.
Thanks and take care.

Introduction,new member

Posted: Sat May 10, 2014 3:36 pm
by jenny lucas
It's great at his dad is a definite presence in his life, and is 'onside' with you in terms of encouraging your son to interact socially 'in the real world'. That said, don't underestimate the amount of actual communication that has to go on in the virtual world of gaming. I know, to us, it seems very unreal and 'irrelevant' but just as we are exchanging views and thoughts here in an 'unreal' Internet world, and yet we know that each of us is a real person (somewhere offline!), young people do realise there are real people behind their online nicknames. Also, just as here, we have to observe social etiquette and conversational conventions etc, in online gaming it's similar. There is fair play and competition and shared missions and local rivalry and a degree of teamwork and cooperation as well - all of which are abilities and talents and conventions we need when we communicate in the real world as well.

So, in that sense, I think it can only be a positive sign for him that he can participate in a virtual community online with his gaming, even if it's on a 'better than nothing' evaluation!

One thought with your son's dad, and 'getting him out'. What might really help (if it could be achieved) is some 'exercise' with the both of them. Could your (ex?) get your son to participate in some 'man-stuff' that involves fresh air, exercise, that kind of thing. Going out for a run together would be ideal, but joining a gym and having regular work outs would be brilliant too. Exercise of any kind is enormously valuable, not just physically, but mentally. It releases feel-good endorphins, gives a sense of purpose and goals and achievements, and is an all round win-win (it would do your ex good too!). If finances allow, hiring a personal trainer, at least initially, at a local gym (most councils have some kind of gyms these days), to draw up a programme, and set goals, might get them kick-started.

If your son does have some form of Asperger's-like disinclination to communicate with others and participate socially, then exercise can really help - though probably not team games (that might be a bit advanced for him!)(and SO many young people who are NOT keen on team games are really, really put off from those types of exercise that don't require teams, eg, working out, running, swimming, martial arts, kick boxing etc etc). One of the 'upsides' of those on the ASD spectrum (if he is!) is that they tend to be highly focussed and goal oriented in that they can set their minds on something and really stick to it - which in exercise terms means things like, for example, getting his lean tissue percentage to a certain target, or his cardio-vascular endurance to a certain level, etc etc.

As for forums, I don't know of any off hand, but can have a search - I'm sure there are some for parents of 'troubled teens' and they may point to others that are for the 'troubled teens' themselves (teens, young adults, etc).

I do feel there may well be another avenue open to you, and that is the, not 'tough love' exactly, but perhaps more 'firm love'. You don't say what your son does all day (except stay in his room online gaming?) but making it clear to him that living at home (as a NEET?)(Not in Education, Employment or Training) is simply not acceptable. Like all human beings he has to earn a living and pay his way, and the young do that in one of three ways (or all three!) - they do household chores, they work for money/volunteer, or they study/train. That's 'the deal' if they want to continue to get board and lodging at home! If your son thinks it's Ok simply to hole up in his bedroom, with you paying the rates, the broadband (!), providing laundry and food etc etc, then he can think again! At the very least there are household chores which are his share of the family work that needs doing. (Of course, he may not be a NEET at all - or, conversely, he may be so mentally ill that he is effectively on 'sick leave' from life???)(a delicate point at which someone is so mentally ill they are spared the obligation to earn their own living in any way!)

Hope you find what I've said positive rather than negative, and I'll see if I can spot any suitable forums that he might find comfortable to participate in.

All best, and I do appreciate how worried you are - we just want our children to be happy!

Kind regards, Jenny.