[mandino12]

My adult son is now 26 and for years he has been locked in his head. He lives at home with me and his Dad. His sister who he is very close to is now a mother of 2 and lives outside London. I took him to the emergency dept of our local mental health hospital 2 years ago as he was behaving increasingly oddly - lying in strange places and curled uplike a ball. He entered the NHS 'system' of random help mainly medication based which he fought not to take. No more than 3 psychiatric appointments were given to him. Its a long story but after being discharged from the therapeutic dept attached to the hopital by a clinical psychologist as she didn't know what to do for him, she referred him to a different dept that dealt with the serously mentally unwell.
After 8 months of half hearted 'care' he was discharged into the hands of a project worker as it was believed that it would be good for his independence/confidence. He does not talk much unless he really has to - he doesn't work - he has never had a girlfriend (he is 6'2" and lovely looking) he does virtually nothing and will not engage in anything. He sits or lies down all day with his eyes shut or blinking and cannot make decisions about the simplest things like what to eat for breakfast - thats if he can be bothered. He has lost I guess around 2 stone in weight over the last 8 weeks.
This isn't everything but it just too long a story. We now realise that he has been unwell for upto 10 years.
My question is, if the NHS mental health dept don't know how to treat him and he cannot open up, is booking a consultation with Benjamin going to be something that would help him? Does he have to want this help himself for it to be effective. Other appointments have come and gone without him attending as he hasn't 'felt up to it' no matter how much we have encouraged him to go.
We know we're not the ones who can make much of a difference for him and that it has to be him himself but it is a physical pain watching him suffer in this unbearable state.

[Benjamin Fry]

It may be that his condition seems worse than it is because of the aggravating factor of multiple efforts at treatment which have been unsuccessful. This will leave him stressed and untreated. It is hardly surprising that he resists treatment since it doesn't help.

Can you think of anything that might have been difficult for him in his history since birth, other than this illness?

Try to answer these questions and I'll see what I can recommend:

What were the original symptoms 10 years ago?
What diagnosis (if any) did the NHS give to him?
What medication is he on?
Do you have any financial resources for private medical treatment?
Where are you?

[mandino12]

Thank you so much for replying to my post. I have thought long and hard about a trigger or life changing event that happened to James in his past and the I think that the most difficult thing for him to have had to deal with was his leg operations. He had 2 arthroscopies on his knee to determine the cause of chronic pain when he was 13. He had a years wait for the first one then when they knew what was up he had a cartilege transplant involving 2 further operations the last to insert his regrown cartilege which resulted in a hefty 6" long scar. He had always been really active and tried to keep up his football between the operations but by the final one when he was 15 was just about the end of his sport as the recovery was a long one physically and now we think mentally.. his friends were mainly his football mates and school mates drifted as he had so much time off school. This was all ontop of his GCSEs and not surprisingly he failed most of them which really upset him. He continued to retreat socially as maybe felt a bit of a misfit as all his friends were going onto to do A levels and then uni. He did take up with some friends he knew outside school and slide into a culture of dope smoking and a general aimless lifestyle although I did manage to get him to take up a couple of music courses but he didn't really get stuck into it. No amount of encouragement seemed to work or leaving him totally to his own devices.
When he was 18 one of his friends died of a freak accident when he hit his head on the pavement after a fight about a girl that James also had gone to school with. Again we think this had a huge impact on him and then his best friends mother died of cancer shortly after. (He does have a strange reaction about death related issues - TV or stories he hears.)
There is more.. but to answer your questions briefly - No NHS diagnosis 10 years ago we didn't know at that time he wasn't well.
He is on 40mgs Citalapram which doesn't appear to have any impact. He wont take an antipsychotic.
We can pay for some private treatment within limits.
We are until the end of January in North London - we are moving to Suffolk which is another hurdle..
Amanda

[mandino12]

Something I forgot to say - at the most recent discharge meeting with his care co-ordinator and a psychiatrist this week which we were asked to attend, the fact no actual diagnosis had been made was because that 'they just did not know and did not want to label him just to satisfy us'. I really didn't want a label for him to have to drag around with him, more that it just felt so disappointing that after all these appointments James was no better in fact declining compared to 6 months ago. Its as if all control has gone from his life, although we try to help him feel empowered it doesn't work..

[Benjamin Fry]

Well that sounds like a difficult experience for him in his teens. However I would be looking for something earlier in his life, which this may have been a trigger for reawakening. Usually we find something from the first few years of life holds the key to an accurate diagnosis. Often though these can be outside of the awareness of parents and child.

Why is he on the Citralopram if it is not doing anything? Are you sure he would be the same without it? It could be that the medication is making him disinterested in life at the same time as helping him be more level. Drugs are ideally used to get someone stable and prepare them for a more curative treatment.

If his condition is based on events in his life then he needs some high-quality trauma work to help to recover from the source of his reaction to life's events, and to those subsequent events, and to the illness and treatment he has had. The best treatments are Somatic Experiencing and EMDR.

There is a reasonable chance that he is suffering from something from which he could make a decent recovery with the right treatment. This work is much more developed in America, particularly in the South West, and most practitioners in England are not very aware of it, particularly in the medical profession (although EMDR has made an impact).

It could be that he is suffering from something more structural, such as a genetic defect, but it is less likely. It sounds like he has some underlying trauma fault-line which was stimulated by his teen experiences and then concreted over by the inaccurate care he has received. If so, he can recover if he can be persuaded to want to, and if you can pay for private treatment.

The best treatment in the world for this would be at Mellody House at The Meadows in Arizona. You would probably have to budget around $40,000 for that plus ongoing care on return to the UK. Suffolk is not an ideal location for this; North London is; but you might be prepared to travel.

I would love him to find the treatment that works for him. He is in a private hell and all you can do is watch. You are unlikely to get any real help with that in the UK for free; yet. I'm trying to change that.

[mandino12]

Thank you so much for your in depth reply, I really appreciate it.
It was a bit of a struggle to get him to take the citalipram at the start but as time went on the and dose increased he was strangely more inclined to take it. He controls this himself and it is a catch 22 really as to whether he would be better or worse, off it. He is level though, on it and could be in an even darker place without it..
As far as his early childhood goes, I can't think of anything traumatic but we had a new small business that his father spent most of his time trying to build up for us. This meant I was at home bringing up him and his sister pretty much on my own which was ok but I do feel I over compensated for the lack of attention they both had from their dad, particularly James. His dad was doing his best for us all but on a short fuse due the pressure associated with it and we did have some pretty awful rows and infront of the children, I am ashamed to say. I don't think I was as understanding as I sound now.
His sister has recently been diagnosed with Borderline Personality Disorder and had treatment at the Priory, paid for by the NHS! She sorted this out herself. Her teens were very 'up tempo' and difficult to handle and her outbursts, I think, in hindsight would definitely have affected James. We only now know it was more than teenage angst. I also believe this condition (and others) is laid squarely on the shoulders of the parents..

Many thnaks for the information regarding the treatment that is out there - I will do some investigating as to its availibilty.

[Benjamin Fry]

How old is your daughter? Is she now on medication and if so, do you know what?

It is a difficult process for parents, but we should not think of blame, only causality. The human psyche is built like a building, from the ground up, so the lower down the faulty bricks lie the more wobbly the structure can become under adverse circumstances. Also, when the child is very young, it has few choices in the "fight, flee, freeze"response to threat., because flight and fight are not possible when very young, so freeze becomes the default (which leads to unresolved trauma and problems in later life). And thirdly, a small child finds things more threatening that an older one in general.

So all in all, the early years are very vulnerable ones, particularly the first three to five years when the psyche is still being born. Parents are often the main influence at this time, so the colloquial idea of "blame the parents" comes about. But this is inaccurate. We are just trying to diagnose the perceived threats to the child and the environmental blocks to resolving them. This is often the main care givers, but could be a relative, a stranger, an act of god (like an earthquake), or just circumstance (like finances).

Parents often face an uncomfortable choice between a horrifying look at their own innocent role in creating these issues, or maintaining the status quo which sustains the problems. The pain of taking an honest inventory is temporary though, whereas the healing it can lead to is permanent.

In your case with both children suffering, I think you would want to explore the family dynamic. If the issues are genetic then there is little that you as a mother can do, so it is better to concentrate on what you can do instead. The issues you describe don't seem serious enough to have created this level of adult disturbance, but as part of a wider dynamic there may be more to understand.

[mandino12]

Hello again and thank you for taking the time to reply - I am very grateful.

Mel is 29 and after having bulimia for 18 months started on Prozac, now a fairly high dose as she is the mother of a 4 yr old and 6mth old and had post natal depression with her first. She is a wonderful, patient mum who loves her boys immensely. She has a supportive loving husband.
I think there was a chance that I had it as well, only now really knowing the symptoms. I became a bit of a perfectionist I remember brought about by a particularly tidy friend with an overbearing mother..! ( I am much more relaxed now)

We weren't smackers or harsh disciplinarians - our childhoods were polar opposites - me, private boarding school, distant parenting where I saw them twice a year when they were abroad - husband, council house state schooling, random parenting left to his own devices. We married young, 22 and 24 and I fought to make it last, it was against my parents wishes. Not sure why I'm telling you all this, sorry.
I believe that we had children because I wanted them.. though we waited until I was 26.
Mel has said that part of her problem was the she was always made to feel that she had to look after James and consequently has always worried about him even when she had no reason to.
As far as the family dynamic - fathers' word generally goes - I am not a wet blanket and with no-one around will stand my ground, loudly when necessary. It can be like walking on egg shells sometimes and probably felt like that for the children as well. His mother had clinical depression and more than one suicide attempt when he was growing up. Did our children ever stand a chance?! I don't like to think that our childrens' conditions as being genetic as I can't see how you can recover, although it's highly possible it is..
I think I have been too protective of James as he has been growing in an effort to compensate for the - as I see it - lack of one to one with his father. I have apologised quite recently to James for the mistakes I have made in the past but explained I only ever wanted the best for him and Mel. He appreciated it but said he thought I had done ok. I hope his father decides it's a good thing to be able to say sorry to one's children without blame.
Mel could always stand up to her father but James only risked it once when he was about 10 and then never again. I so want him to brave it again. By the way he isn't the ogre I am describing just the old fashioned 'respect one's parents'thing. Strange really as he was certainly no saint as a child! He has been a much better father in the last 5 years as the pressure eased off and knows he missed out on precious time when they were growing up. Is it too late to make amends?
You didn't ask for my life story, I am sorry, I can just get carried away sometimes - this is the short version by the way..
Just to say James appears to be feeling a bit better over the last few days - I think he knows that he can make himself well and maybe things are about to change for him.
Oh and last thing I mentioned we are moving to sleepy Suffolk at the end of January - James may or may not come with us, it will depend on how well he gets on with his project worker from Sanctuary Carr-Gomm who can also arrange housing and James is up for it. He really doesn't want to leave his lovely home of 23 years but I think it will be the making of him - let's see. Our door is always open.

I really look forward to your next TV show - you are a very inspirational man, thank you.
Kindest regards,
Amanda

[Benjamin Fry]

I think that there are probably many generations of pain to work through there. If you engage as a family with the processes I suggested you are likely to do well. It is in the unravelling of it all that the healing begins. I wish you the best of luck.