my son is so lonely and frustrated after his brain injury

[helenx]

in june last year my son was assaulted its left him brain damagedand disabled he gets so frustrated and lonely as his friends have deserted him how can i help

[Drusilla]

How old is your son...?

[helenx]

he was 17 when it happened in june last year he turned 18 in the august he was still in hospital

[jord38]

I'm so so sorry to read this, there are some evil people in this world. He is bound to get frustrated bless him. I can't believe all of his friends have deserted him, obviously not true friends. How disabled is your son? Can he talk, is he mobile at all?

Lisa x

[helenx]

hi he has been very lucky really he can walk short distances but has to have some one with him as he stumbles he needs help up and down stairs and in and out the bath he can talk and argue bless him his short term memory can be bad at times as can his temper

[brighton88 in reply to helenx]

I was in my late 40's when I had my operation and radiation which resulted in me loosing my memory poor speach big problems walking loss of coordination, even had an electric bath hoist. I was told that the older you are when you have your brain injury the slower any chance of recovery is, as after 17 the brain itself stops growing. Have you asked advice on how long? I know we'r all different, but although I now use a stick I can walk, talkings ok although when excited i get a bit toung tied, fatigue a problem short term memory loss yep. Please encourage him to keep going it will come it's just a long road. It is sad that his friends have all gone, but youngsters too have short term memories and for them it was a long time ago. Wish him well from me

[helenx in reply to brighton88]

thank you all hes told it will take time no one knows how well he will mend its just a waiting game and very sad and frustrating at times

[jord38]

I sincerely hope that as time goes on he will make some new friends and be happier, it must be so hard for him. It's even worse that this has been caused by somebody else. I'm 38 and had a brain haemorrhage and I find it hard to come to terms with so god knows how your son feels. Take care x

[helenx]

hes alays been small and picked on alot at school etc there was this lad that stuck up for him when we moved to a new area saw himaweek before this happened he was fine then one day he decided to play fight it ended up with him kicking and thumping and jumping on his head for 6 mins it was on ctcv it was a friend he can't come to terms why he did this

[helenx]

so sorry to hear that you are truly a strong person and an inspiration to us all i have an autustic 12 yr old he finds it hard he doesn't understand there just doesn't seem to be any help to get my so home we had to put him in my daughters room nxt to the bathroom which means since august i've been sharing a bedroom with my 16 and 1 yr old daughter and my partners on the settee

[Danslatete]

I found that some of my friends made like a gohst and dissappeared, i also found that other pointed and made fun, some even went to far as to say i was attention seeking. At the time i was too far gone to care but as i got a bit better i didnt understand why, i could not understand what i had done to be left on my own, truth is i had done nothing, they just werent able to cope with the broken mind i was left with. Others just laughed it off when i called them all the names under the sun because they were the one who were around me to hear the anger and frustration, they are the few who are still around. I moved to a new area and no one knew me pre head injury. this made it easier, headway also made it easier, going to the gym and swimming got me to open up socially as well as doing the rehab. Its all part of the recovery and it can take years. Sometimes my family got frustrated at me because i would improve then get stuck right back at the why did this happen and its not fair, and its all my fault that my children are homeless and miles from everythng etc... this affected me for a fair few years, still does on occasion but it is a thought process that can be put away when ive had a moan now where as in the early days it was all i think about during my waking hours x

[brighton88 in reply to Danslatete]

the worse I get is people telling me it's my memory loss, when clealy it is an easy way of winning an argument with me, blame it on my memory. I reply 'what's your excuse'

interesting you say you moved to a new area, as then there is no attachment to your injury; I like it.

I still have problems in public where people push past me tutting and making comments when I am slow

[vjones2 in reply to Danslatete]

i found people so called friends do same 2 me

[helenx]

i can see alot of my son in what you have said and the word time is one my son hates and gets frustrated with as amum its so hard to watch he was at college he'd just passed his level 1 in painting and decorating and was about to start level two when this happened i don't no what tosay to him some times he just gets so angry and nasty with me and tells me to kill my self this really upsets his brothers and sister

[Lubilu01]

I feel for all of you. It's understandable that your son gets so frustrated and angry, it's just a shame it's you on the receiving end. Has his so called "friend" been prosecuted? Xx

[helenx]

he had to wait nearly 4 mth to see a pysiotherapist hes seeing one now but he has to wait his turn for an ot and a physcologist apparently the youth got 8 years because it wasn't his first violant out burst the judge said any more violancr offences ever hes to get life he turned 18 in jail my son hospital

[brighton88 in reply to helenx]

glad he was sentenced, this kind of thing happens far to often without justice

[Bards]

I'm in Dorset so no advice for you on contact groups/ befriending etc in Derby; maybe someone else does..? Wishing you the very best x

[ncmurphy1951]

lord i am so sorry to hear your son despite his young age has been desrerted by his friends and justifyably feels desterted and depressed i would to it is difficult to know what to suggest except clearly you and his family love him and respect him be with him support him a friend in need is a friend indeed clearly they are not friends and should not be referred to as again cast them out and build new friends i had to do this to one or two friends and a sibling for whom i was there in their hour of need even set one up in business now he living the high life take a day at a time the first so called friend makes contact act the adult greet and be pleasant to talk about your sons achievements no thanks to them my method was to raise £8000 for charity in marathons ffriends true friends call me inspirational poor ones all over me like a rash with invites which flag pole firmly on the high ground i decline on the grounds i have already accepted another invite suddenly they got the message wise man once said the brain more powerful than brawn common decency and mannners are what true friends hold dear wish your son a good swift and stress free recovery regards

neil

[Lubilu01 in reply to ncmurphy1951]

Well said Neil x

[clc34]

hi there, i fully understand how you feel as my son was involved in a RTA in oct 09 he was 13 at the time, i thought something like this would bring him closer to his friends but he has ended up on his own an lonely an he doesnt understand why people havnt got the time for him anymore especially as he was a very popular lad before his accident, im just hoping it gets better over time as he grows up but from reading some people messages on here it doesnt seem that way

[eddyins]

my son was 32 when he was involved in a motorcycle racing accident he had been british champion in 1998 and was very popular and good looking with the promise of a rich future in racing after his accident his many friends and fiancee drifted away sadley and he is now left with me as his only friend i spend 12 hours a day with him we are going to the gym now but he seems incapable of making any meaningful relationships i still live in hope but its seems normal

[jord38]

Reading all these posts about being discarded by friends is so sad. Won't your sons come on here? I know its not the same but might help a little if they chat with others about how they feel. Lisa x

[brighton88]

yes I was very lucky in having 5 physio's one after the other each working on a specific area, meeting people at Headway who had no physio input I realised how valuable that was

[brighton88]

I'm also cheecky and if fed up will joke back 'oh it must be my brain injury' works both ways

[helenx]

its such a shame theres no groups around hes still very confused and upset over things and its hard to find the right words

[clc34]

hiya monkey, yea once my son came out of hospital 10 months after his accident he went to a disabled school for a yr where he kind of fitted in, but then went bk to his old mainstream comp which was an all boys school for his last yr so he could try an do his gcse's, my son has changed so much personality wise an has so many social skills issues that when he went bk he jus didn fit in with anyone, and like u said he seemed to be more popular with the bullies too an with no one to stick up for him he had a hard yr, thats over now thank god but he still is desperate for a "normal life" as he puts it and wants friends but everyone he meets now just doesnt know how to deal with his upfront honesty and his inappropriateness which he has gained from his ABI,

[jord38]

I come up with one occasionally

[helenx]

nottingham/derby area sometimes hes in complete denial that hes differnt to whst he was and just wants to go off out hes not allowed withput supervision i hope he comes to terms with things soon

[clc34]

hiya helen my son sounds jus like ur son he doesnt accept he is disabled now and wants to go out on his own but is not allowed as he is so vulnerable, its so hard to try an make him understand

[helenx]

thats exacly whats happening in my house i have a 12 year old thats autistic also he thinks i'm treating him like that its hard to make him understand

[clc34]

yea i have to keep trying to explain why he cant go out most days as he has probs with his short term memory too, he jus doesnt understand an seems to have an answer for everythin yet when hes out an about with us he shows he jus wouldnt cope out there on his own, it breaks my heart to hear him say how much he wants an independent life an how much he has missed out since his accident

[helenx]

thats what we are going through at the moment hes lost his independance his mates i just want to help him make the best of what he has left

[clc34]

yep excatly how i feel but dont know how to help him either though, except try an get him more professional help with his social skills which is not that easy in the community, especially with all the cuts that are going on

[helenx]

he had to wait 4 mths for his physio heswaiting for the other things ot etc don't no how long it will be we need to move house can't see hat happening either

[clc34]

really how come it has took that long to get physio's an ots thats crazy, i had to move home so that they could release my son from hospital as my old place was very unsuitable but i think i only got that quickly because they wanted to get him out of the hospital, but since he been home we had ok ish physio an ot support at the start but hes now stuck inbetween child an adult services which seem to be makin it even harder to get the things we want, he only sees physio an ots now once hes had botox injections which was every 6 months but that seems to hav gone over a yr since his last ones if only we had money we could give them the best but havin to rely on the nhs an councils is just crap as constantly have to fight to get anything

[helenx]

we haven't seen an ot yet i'm having to share a bed room with my 16 and 1 year old daughters and my partners on the settee so my son can have a room on his own as he can't share now no one will help us in moving in fact i can't find any help any where

[clc34]

oh wow bless u all, im shocked they let him go home from hospital soo unprepared ot's and physio should of been in place from the start i would of assumed, did he hav physio an ot while he was in hospital an also how was his walking by the time he went home? i would assume once u hav got an ot they will help with the move as thats who helped me, i hope u get the help u soo much need soon as im sure the upheaval of sleeping in different rooms is taking its toll on all of u

[clc34]

also have u been in touch with the childrens disability team which is linked to the social services im sure ur area must have one as they may be able to help, as they provide my son with 2 evenings a week where a youth worker will come and take him out for a few hours which helps by giving me a break and letting him socialise at the same time with someone watching him.

[clc34]

yea its a shame youngsters have little time for others with disabilities, i really wish my son could just make some friends that arent either using him for their entertainment which i hav found his old school friends doin a few times online which i hav now how to cut out as he he jus sooo vulnerable even on fb which was his only social life, but he just doesnt see it wen people are takin the mick out of him, or he is jus desperate for a friend it doesnt seem to matter if there not always nice to him, i try an explain but he forgets the nxt day wot theyv said to him

[Lubilu01]

Are there no groups for vulnerable young people with head injuries / brain damage, like this but specifically for them to chat and sound off and maybe make friends? I am going to search! X

[helenx]

i can't find any thing i have asked around its like no ones interested once they have been sent home from hospital

[clc34]

really thats not good which area do u live? an yea i fully agree on that my son got refused rehab funding by the primary care trust because he came home first and started to recover so they said rehab wasn needed, weve had to fight for everything

[helenx]

i live in the nottiingham derby area its just terrible you shouldn't have to fight we go through enough without having to fight

[Lubilu01]

Why why why is brain injury not taken as seriously as it should be, it is heartbreaking, it makes me want to do something to change things but I don't know where to start, bet we all feel the same! Xx

[elizasmart382 in reply to Lubilu01]

I knowwhat you mean I explain about my brain injury to people and thier like brain what? The soaps dont help either tryin to do brain injury stories its laughable!!!! Jack in Eastenders is the best one yet but still not realistic was up running around the square in no time! Tina in corrie was behind thebar after a week!!

Thats why peope dont take it seriously!

[helenx]

yes all i see is the goverment closing all these needed day centres for the victims and there families its so unfare

[nick_01]

Do u think I'm to immature as i drunk to much thats how I fell out a 3rd floor window and got my head injury?

[nick_01]

I read this and dont really know what to do as im also so lony but having my family is what i needed so i guess that just being with him helps alot. im sorry i cant be of much help hope all works out for you.

[clc34]

ive found the details for the nottingham childrens disability team which cover up to 19yrs of age, heres the link to there web page

nottinghamcity.gov.uk/index...

it says u can refer yourself and gives there details they should be able to help with a few of ur probs, ie housing and maybe gettin ur son out for a bit ie with youth worker to cinema or wot ever ur son likes doing, also ive found the derby teams info, here is there link,

derbyshire.gov.uk/social_he...

i found the nottingham one has easier information as the derby one just says get in touch with your local social care office, i hope im not giving u info u already kno anyway jus thought id try an help as im sure u and ur son must b entitled to help from them.

[helenx]

oh thank you very much this is brilliant this is all so new to me thank yo again

[clc34]

no prob glad i could help, plus if u need any other advice jus giv me a shout

[headwayuk Partner Headway]

Hi helenx,

It's great to see the excellent support and information you've been given by our members on here. The links clc34 has posted are really good, we would definitely agree that these Social Services teams are well worth contacting.

Have you contacted our helpline too? They may be able to discuss things with you and give you some more details of local services etc.

Best wishes,

Headway.

[Hidden]

i WAS like that

im not so bad now

when i WAS angrey it was because i was guilty of letting this thing happen to me and my family

time that dreaded word is the best thing for us as it gives us the chance to think and repair

i was attacked the same as your boy

its called a one punch kill ,,,,,,,,but no never im still here

hang in there helenx it gets better

re; angry lad

monkey 3913 sorry

[elizasmart382]

Hi Helenx i was 16 when i had my brain injury but i think its different for girls as my friends showed thier emotions and greif but the lads i knew hardly talk to me now probably because they dont know how to act/ say unfourtnatley. Haing brain injury (ive found) makes people grow up fast. Then there seems to be a gap betwen the brain injured person and his or her friends. I liked meeting people after my brain injury because they couldnt jude me on before and after.

[helenx]

my son seems to be a lot younger than before and i fear people could take advantage

[charlies_nan]

Hey Helen. I have just read your post and my heart goes out to you. I too have a son who has suffered a brain injury, although his happened three and a half years ago. He was 25 when the damage occurred and prior to this was a personal trainer with clients both in the UK and overseas. His path to brain injury, like everybody else's, was different......... he suffered a hypoxic injury courtesy of the NHS; a 12 year old doctor (well he looked that old!!) working in a busy A&E department who thought he knew better than the advice given by a superior, a consultant who couldn't be bothered, and a junior member of staff who, seeing my son was turning blue, phoned the aforementioned consultant and left a message on his answer phone asking for advice. So really you and a are very similar - both sons damaged, and damaged by others who were trusted.

It is so very hard when something like happens in a family. It is not just your son who has suffered/is suffering. I describe it like a pebble being dropped into a pool of water - the initial "plop" is when the damage occurs and then the ripples are what happens to the family, the pain radiates out. So, whilst I am mortified by what has happened to your son, my first thoughts are for you, rightly or wrongly.

I truly hope that you will find answers and comfort from the people that you meet here. When it happened to our family (my son, daughter, her then unborn child and myself) I could find nothing like this forum; nobody to discuss things with and ask questions of, apart from Headway who were located many, many miles from where I stayed, so weren't an option. I was forced to question and discover answers by myself, whilst at the same time trying to cope with a raft of other things which I felt were conspiring to bring me down. But, somehow, from deep within, the fight and determination was found and we're all still here, continuing with our lives and progressing forwards; and I feel sure you will also, you will find the answers and the strength to do right by your boy.

You have mentioned that all his companions have deserted him and others have commented that they could not be true friends - personally I feel that at 17/18 young men are having a really tough time with their bodies and emotions and their journey into manhood. They try so hard to sort things out, but with the massive influx of testosterone it is really very hard - most just don't understand. There is also the problem that brain injuries don't 'show'. If somebody is disabled an onlooker can see that the legs don't work, the spine has problems et al, but if the brain has been jumbled, that's a whole different ball game - the injured person looks the same. Some of my sons mates came to see him initially, were very pleasant but they never returned - they just didn't understand the difference in him. At first I was cross (with everybody) but then I came to the realisation that it was ok and to move on from it.

As for rehab, I didn't realise at the time, but now I know I struck gold. I did some research and found that (in my opinion) the best place for him was a BIRT (Brain Injury Rehabilitation Trust) unit in Yorkshire, although as an organisation, they have many units throughout the UK. Now bearing in mind this was over 370 miles from where I live, the odds on getting the PCT to foot the bill were slim, but somehow I persuaded them. There he received physio, social skills, speech and language, psych help (that's neuro psych), cooking, planning and shopping and many other things that are too numerous to mention. It was what he needed (but not always wanted) to get him on the road to recovery. He's not back to pre-injury, he never will be, but the place he's at now is far forward to where he'd be had he not had their guidance and help. So perhaps write letters, make phone calls, stamp feet, thump desks, bang on doors - whatever it takes. It is so important to get him some assistance - and not just for him!!

Now, this was only going to be a short response, but it seems to have turned into an essay and for that I apologise. If you need any help, or just somebody to have a chat with, please don't hesitate to contact me. If I can I will. Take care and don't forget to look after yourself.

[SAMBS]

Hi Helenx, your original discussion has come round again, 1 year on so thought I would say so sorry to hear about your son's plight. I was not left disabled by my BI but for other reasons do understand loneliness and frustration.

Friends disappearing sadly seems to a common point often made here on Headway discussions, not for everyone but quite a few.

I want to say I hope the situation is improving for your son, albeit it may be slowly. Did you manage to get any rehab or day centre care for your son, to let him then enjoy the company of others and perhaps start new friendships with people in similar circumstances, as well as some practical help for himself. x