I fear for DS future and I am afraid that I am not a person

[Livingtothefull]

Today I took my DS out for the day, I wanted him to have fun. He is 14 and in a wheelchair, has cerebral palsy and severe learning difficulties.

I walked across town to do an errand then took him to the restaurant of his choice. He asked for a 'train map' so I took him to the railway station to pick one up. Then I took him for lunch at a restaurant of his choice (DH wasn't feeling well & didn't come with us).

At the end of the meal DS managed to lose his train map. I don't know how, the waitress may have taken it away with the food leftovers or DS may have dropped it somewhere.

DS had a meltdown because he didn't have his map….swore at me a lot. Apparently and unbeknownst to me I am a 'stupid f--ing bitch'. This is after I have bent over backwards to give him a nice day.

I had to go to the bank afterwards which was open, to pay credit card bill. DS picked up piles of leaflets and threw them on the floor, also knocked over the displays and swore at the staff. There was an elderly woman customer there who was shocked, stared tightlipped at me.

I left bank and told DS I was disgusted at his behaviour and while he behaved in that way he would get nothing. DS lashed out at passers by calling them 'f--ing idiots' including small children. I had to dodge passers by whilst walking him home as I was scared of what he might say.

I managed to get him home and told DH what he had done. I told DH I didn't want to be with DS after the way he had behaved, and left DH to talk to him….DH told me to leave as he knew I had had enough. I came back shortly after and DH made DS apologise to me.

Later DH said that I should have talked to DS and tried to understand how he was feeling. I told DH that I understood the point he was trying to make, but I felt that DS should know how much he had upset me.

I now feel extremely guilty for reacting the way I did. DH is a teenager, he is growing up and it is not unusual for teenagers to lash out I believe? And he is stuck there in that wheelchair, is it any wonder he gets angry and lashes out the way he does?

Anyway I don't know why I am posting here. I am having a rant because I am sick of things being so hard. DS behaviour is bad, but it is so so understandable…but I need to find a way to get him to control it. I just can't have him swearing at passers by the way he does when he has a meltdown.

I also feel that I am not really a person. When I try to broach the subject of how hard it is to deal with DS and how potentially socially isolating it is, I can see people's eyes glaze over; they really don't want anything to do with any of this. I feel isolated from my own family because of this, nobody knows what to say to me. I don't blame anyone if eyebrows are raised at this, I am used to not fitting in anywhere.

Was lurking but had to delurk to respond to this - OP you're not in the least bit evil. Not even a bit. You're just ill. You sound like you might be having intrusive thoughts, however these are quite normal (albeit very distressing) with MH issues like depersonalisation and depression. You're not evil for thinking these things, because they're not you, they are your illness. And no, you haven't caused your illness, nor do you deserve it. Please see your GP, because like any other illness MH stuff needs medical care. You thinking that there is 'no you' is your illness speaking, it isn't reality, and neither is your 'evil'. This thread proves what a lovely, sensitive, empathetic, kind, caring, determined, and strong person you are. Not evil at all. It's just that your illness won't let you see that.

You know how anorexic people cannot see how thin they are, and think they're really fat? That's like what your illness is doing. You see yourself as evil when you're exactly the opposite. And in the same way, you do need help to deal with this - please seek medical care for yourself.

My understanding is that there is an increased right to carer support following new legislation, can you pursue this?

Just googled, foundCarers UK

here So you are a "parent carer of a disabled child" and entitled to a "parent carers needs assessment" under the Children and Families Act 2014.

You should tell your GP that you are having these thoughts, op. You sound as if you are having perfectly normal reactions to an incredibly stressful life - there is nothing in the slightest bit evil about feeling angry or whatever else you feel on a daily basis. What is not normal is you obsessing that you are evil.

I hope here 's link proves helpful. You need support.

I'm glad your DH is doing ok at the moment.

Thanks all for your post. Thanks for the link herecomes, there is a helpline there which I might give a call.

I do feel a bit of a fraud calling though….I think I am fairly well clued up on my rights, my DS already gets DLA. I don't want to waste the caller's time and prevent someone in real distress getting through.

It is the emotional support side that is lacking, I don't want to burden DH.
Do you really think I am ill then? I don't know how I come across here….am fairly (anonymously so not courageously) outspoken about certain things. Mostly in rl I am not like this; I just get on with it, do & say what is necessary. I think that on the whole I cope OK.

But yes I do know how quickly things can unravel and I am vulnerable if further pressures come along. For this reason I am worried about what may happen when DH has his surgery. I would really like to know what ( if any) support we will be entitled to…..don't hold out much hope re GP but maybe can get info from the Carers link. Unpaid leave isn't really an option, I am the biggest earner.

I think you need help, yes, Living. And I think maybe you feel safe enough on this thread to say what you really think and feel, which you cover up in RL.

You are not a fraud for calling the carer's helpline. It was set up for people in exactly your position. If you can't do it for yourself, do it because your DS and DH need you to be strong and well for them.

Do you have a close friend in RL who knows how you feel right now?

Your ds sounds angry.. behaviour us communication . Does he have access to camhs counselling ? ? What short nreaks does he have ? Does he spend time away from you ? Does he go out with befrienders or careed ?

Or carers. sorry.

Living you sound amazing, caring, kind and strong. But you sound as though you are struggling right now,because your life is very very hard. I hope that you can get some help. Maybe you will have to spell out how hard things are for you, to get that help. Don't feel bad about doing that, if you need to.

I don't have any close friends at hand….do have some but no they don't know precisely how I feel. I talk about it a bit but not in depth, when I try to talk I feel the other person get uncomfortable, that they don't know what to say. I suppose they feel helpless.

DS has access to counselling through his school yes….this was put in place last year after his best friend moved away & then his GM (my mil) died. Yes he is often angry, although I don't know precisely what is going through his head to cause the anger, it is so understandable.

He doesn't get short breaks…used to but they have been cut now. We have some respite care but there are some vague threats that this may also be taken away.

A feeling that you're evil and not being able to let it go (when all the evidence points to you being the opposite) is a definite sign of there being some kind of mental illness/distress. Please do seek help. I have had many years with depression and anxiety, and these kinds of distressing thoughts are unpleasant but a common side-effect of depression and depersonalisation and related conditions.

Truly evil people do not think that they are evil, much less spend their lives caring for others.

Sorry you don't have any close friends close at hand, Living. Or, at least, friends who 'get' what you're going through. DH is the obvious person you should confide in, but I can understand your reluctance to do that when he has his own health issues going on and his mother has recently died. I wonder if he was more available for support before these things happened? Could that be why you feel more alone now?

Are there any local support groups for carers, esp of disabled/SEN children? Sorry if I've missed you commenting about that.

I know that it is very hard to argue that you need help when you are worn down and have become tired and unwell. It is unfair that if you don't argue, you often don't get any help! A vicious circle.

You are clearly not evil. These thoughts are coming out because you have no time to look after yourself in your busy and difficult life. I think you are nearing breaking point.

You need some sort of rest. Maybe you could tell your DH about how you are feeling? I understand that he has his health problems too and you might think you don't want to burden him, but you ARE a person too, and you are important, in yourself, for you. It will be difficult, but your care needs to be prioritised sometimes.

I apologise if that doesn't make quite proper sense.

The carers support stuff can at least explore emotional support as well as other forms of support. Especially perhaps if your DS is eligible for some sort of mental health support himself. Do, do look into it, you will lose nothing. And don't be embarrassed, be politely enquiring, why not?

As cliched as it is, tomorrow's another day.

My nephew has cp, younger than your DS but I see the frustration that he and his parents go through every day.

I'd be thinking fuck right off judgey people and give yourself a break.

My DD is 2 (nt as far as we know) and yesterday I took myself off to read some magazines and have a glass of wine. Don't kid yourself on how well you're doing op X

I have a son with sn who is 4. So far he is fairly under control but I'm dreading his teenage years. I absolutely feel your pain about the raised eyebrows. Shame on them for judging , ffs he is in a wheelchair so is obviously disabled . You are doing a brilliant job with the hand you have been dealt .. Like you say we cope because there is no choice . Take care of yourself .

go to GP and talk to GP.
make sure your needs are stressed and your dh. stress the aggression and anger. whatever the justification or rationale you should not have to go thru this. so dont. get all help you can....
ask gp to make sure this information is passed to SS for the carers assessment.

respite is there for those who need it.
also GP/CAMHS/counselor for ds - did he enjoy short breaks can it be explored whether that is what he wants? does he want to explore residential schools or colleges?

because college/24 hour curriculum maybe what eh needs - not ebcause he needs to get away from you per se.

We have made a society where everyone has rights and is expected to be able, with gov support, SS etc, to live independently.

Now i'm older i see how crazy this is.

And I also see how everyone is in denial about the support many people need eg when caring for elderly parents or a disabled family member. An example might be a single mum, battling to cope on their own, work commitments etc, when in the past a neighbour or friend might have popped in to babysit or the DCs go to them for an hour. This would mark a DM as 'failing' her DCs nowadays.

Formal care is the only option and cuts are taking this away.
Instead, if giving an hour or two to help out a neighbour for a month or year was the norm how different lives would be.This happened in my elderly aunt's case. The next door neighbour happily called in each evening to see her up to bed. I'm not asking that amount of dedication but I am retired and I know soooo many people filling their lives with golf, exercise classes when if they all gave 2 hours a week what a difference it would make.

After caring for my elderly DM until she passed away the huge weight which lifted off my shoulders when she died was hard to believe - of course I never admit that to anyone, instead thank for their commiserations and agree what a lovely lady she was most of the time .

Sorry, side tracking here, and there are some wonderful volunteers, just not enough.

I have a brother who's just the same as the OP's son sounds, well, he's worse to be honest, in that he'd barely know what a map or a swearword was, but the behavioral issues sound similar.

In the medium term the only viable solution sounds like it's going to be residential care. If that doesn't come until the son is 18 or even 16 that still leaves an awful long time of the current arrangements to go.

The only objective for the OP really is to endure those exceptionally difficult years, to get through them in one piece physically & mentally. Disapproving stares from strangers can and should, well must, be ignored altogether. Unhelpful worries about being 'evil' or whatever need to go too.

Every possible source of support needs to be grabbed at with both hands. Worth spending as much time as possible speaking with other parents, teachers, school councillors, etc. To some extent resources such as housing & respite care are allocated on the basis of who complains the loudest, who's the most persistent. The carers UK forum, already mentioned, is a moderately useful resource.

Going to a GP may not be a bad idea, but the real problem here is intolerable living conditions. What's needed are real, practical, tangible ways to make living more tolerable.

How are you, Living? Did you manage to call the Carers' Helpline?

Hi Toffeewhirl, thanks for your post. Yes I called the helpline,and they have offered a lot of emotional support. I am trying to ignore the disapproval that I get from others…I am trying. It is very hard in practice, a lot of people think we are just in their way. GP will 'look into what support is available' (i.e. I will never hear from him again) & I have been offered an alternative brand of antidepressants. Maybe they will work better than the ones I have been on hitherto.

Today I bathed DS after work, I told him not to splash the floor and what did he do? (clue: water pouring out of the bathroom and threatening to run down the stairs, DH was soaked to the skin and withheld his iPad as punishment). DS got angry about the withholding of said iPad & bit me as I stopped him so I have a large bite mark on my arm.

Another day another dilemma. DH has announced that he doesn't want to visit my Dfamily for Christmas. We have been going for the last few years, but DH wants this year to be at home. DH is upset because nobody interacts with DS much and he thinks they should. So I am busy being a thing that tries to restore relationships and facilitate the other point of view.

I do sympathise with DH to an extent, the problem is that my DM is elderly and won't be with us forever….also she is DS only remaining DGparent. It is not an alternative to have them come to us, they won't come. And I know my DFamily find it uncomfortable to be around DS, they don't hide it very well.

I am a complex mix of 'one who likes to think of herself as a good person who wants the best for all concerned' and 'one who feels bitter and hard done by'. It is exhausting being such a bad human being and feeling such guilt. For a non person I am very tired. Whatever it is that I aspire to be, I'm not it.

Thank you ALL for your posts