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.

Living I think I understand this idea of being a 'thing' in that you feel like a machine or an automaton that just has to keep functioning on an endless cycle. You have so much to cope with. You feel 'evil' because you must feel rage against your son. You would not be human if you didn't. I am sending you love across the Internet. Not the done thing on MN but who cares. Love to your DS and DH too.

^^
What dexta says. Absolutely.

I'm relieved to hear you have asked for help from the helpline and the GP. I hope both bring you some real, practical help, not just promises.

I notice a lot of thought patterns in what you say that CBT could really help with. I have had it myself and also sat though a lot of sessions with my son, who has SNs and has suffered a lot from anxiety. Have a look at this link (just a random google, but lists the patterns I was thinking of). You are doing a lot of these, which is understandable in your situation. One that just strikes me is that you say, "a lot of people think we are just in their way". A CBT therapist would identify this as 'mind reading' and get you to challenge that idea and see that there are other possibilities, eg. the person was having a bad day and was stressed about that, not about you and your DS.

I found that, even being aware of these thought patterns - before I'd done any work on challenging them - helped me enormously and shifted the way I perceived things.

To be honest, I'm not surprised your DH doesn't want to spend Christmas with your family, when they are so unsupportive to you and ignore your DS. What does your DS want to do? What do you want to do? You are perfectly entitled to spend Christmas together as a family if you agree that this would be best for you all: don't feel guilty about it.

Wow. I have only just seen this thread and have read it from start to finish.

Living, I've had that feeling of... Dislocation. Feeing separate and as though I was no one. It was combined with a period of immense stress in my life.

I see it as your brain creating a buffer zone for you. It's all too much sometimes, there's too much for your brain to process and deal with, and so it steps back from everything, so that you can keep functioning and not have to deal with a multitude of feelings all at once.

Usually, given time and space you can recover and slowly your brain takes on more, as it has rested, and you regain that feeling of connection and being a part of the world.

But because you don't have the respite you need, because you haven't got the time to stop and heal, because you have to keep going and there is no end in sight for your stress, it's all ongoing.

And you're trying to find a reason for this disconnect. The reason you've come up with is that you are in some way evil, a non-person, somehow lacking in a way that other people aren't. That's where those thoughts come from.

But here is the truth (and the truth is quite the opposite), you are functioning, and continuing to function when most people would have broken and buckled. Your brain is doing its absolute best to keep you going, and it's done an incredible job.

I like analogies, so here's my take on it: life fractured your leg. You didn't have time to stop and let it heal, so you stuck a splint on it, grabbed a crutch, and hobbled on. If you had some time to sit still it could heal, but you don't have that time. every day you walk on that leg, but you don't want to complain and burden other people, so you decide the problem is you. You should be able to run. You are angry with yourself for not being able to run.

Ok, it's a silly analogy :)

You are still there, and you are whole. You are a whole person. You're just in survival mode right now. Your incredible brain has shut down some functions so that it can keep going. It's a kind of burn out.

I read how you deal with your son, your hopes for his future, and your disappointment in your family, and your love for him shines through. It is so very clear in how you speak about him. Your love and admiration for your dh too. There is no evil in you. There is strength and there is love, and you are having to cope with so very very much.

You need support, you need counselling. You maybe need a new GP who prioritises your care.

You are amazing.

You are more a person than the vast majority of people!

You are so very strong.

You are also in the hardest bit right now. Hold on.

Could your dh come with you to the GP with you, and stress just how much you need help?

Christmas? Do what is best for you and dh. Put you and him first. Forget any "family duty". Pull together.

for you.

I hope my ramble made some semblance of sense.

Thank you all SO much. No not a ramble FuckYouChris, I know exactly what you mean and think you are onto something there….there is very little respite and no end to this so these are subconscious strategies to enable me to keep going and not buckle under the strain.

In rl I am honestly trying to get support but the reality is that there is relatively little available and, realistically, don't think it will change unless we (are seen to) fall apart, I suppose that DH & I are seen as copers and that can actually work against us.

I don't really know what to do about Xmas. I think if it wasn't for DM I would stay home however she moved recently specifically so that she could see more of us/have family events etc. I know DH gets upset because certain members of the family don't interact with DS much but I suppose they find it hard. Last year none of the DNs came downstairs when we arrived to greet us/wish DS a happy Xmas. They stayed upstairs where DS couldn't access and we saw them at dinner only. But I suppose from their point of view, it was their Xmas, they were youngsters and they should be free to enjoy it how they want.

It is horrible to say but I actually find family get togethers a big effort, a huge ask. I genuinely enjoy seeing them all but it is as though we all have to muck in together as members of 'a happy family having a great time' - carrying on enjoying these family events as we always have done. Whereas I feel as though I want us, and especially DS, to be right at the centre of things rather than 'just another member of a big happy family', I want things to revolve around him, acknowledgment that due to DS presence in the family things have to change.

I am making no sense at all….so this is why I find it hard to articulate to my family, just what I want from them. I don't really understand it myself but know that I just feel alienated and don't know how to put it right. If I feel like this, no wonder DH feels it that much more. Also he will be the one having to drive up the motorway (I can't drive for separate reasons), he has a painful health condition at the moment. As I say, if it weren't for DM I think I would stay at home.

Is there any chance that you and dh could use this as a new start? I have no idea if your family are actually rubbish, or if they just view you as amazing copers and so don't offer to help.

If there's a chance it could be the latter, would it be worth risking an all or nothing "truth"?

So you either sit down with, or send an email or whatever works for you, saying, "dear family. I haven't known how to tell you this, but we are really struggling. Dh has chronic Heath issues that make the physical side of moving ds around really hard. I am struggling with my mental health due to having respite care removed and feeling like there's no end in sight with ds's condition.

I'm telling you this because as you probably all know, I am terrible at asking for help. I hate feeling like I can't manage, but right now I'm not. When we come and visit, I worry that because dns don't have ds's disabilities, that they want nothing to do with him. I know they're just being normal teens, disappearing upstairs, but I also know ds wants to be that teen who can disappear, and he can't. It seems such a stark difference, and I know it's not done on purpose. It's just another thing that holds up a mirror to what is happening for ds.

I want ds to feel like he is an active member of the family, that people make a fuss about everything he has achieved.

I know that no one wants to single him out and treat him differently, which can go too far the other way. I don't want him to be on the peripheries, looking in, I want him to be a real and amazing part of our amazing family.

So instead of hoping and worrying I'm going to do what I haven't done yet. I'm going to tell you exactly what I need (I'm sorry I haven't before). Please ask how we're doing. Please offer to help carry a bag, or help lift ds's chair, or anything like that, we won't be at all offended, we would love it! Please greet ds, and ask the kids to too, it means so much to him. Please talk to him, involve him, involve us."

Add in anything else that you wish someone would do. Even better if it's a specific request rather than something more general.

That could be completely wrong (sorry if it is), but spell it out.

Worst case scenario, nothing changes and you're no worse off.

People can be really rubbish, they can wait for you to ask for help. So ask. Unless you have before and they haven't stepped up.

Could you see DM around Christmas, just not on the day? Would that be a compromise that could work?

Unfortunately (sort of) you and dh are copers. You are amazing copers. You cope with so much every day. Copers sometimes need to scream for help a little bit. Just to be heard

That's so helpful FYC. I may use this as the basis of an email to (select members of) my family. I think I would need to be really clear about what I want from them. I don't want to ask for anything unreasonable….also, I think that they frequently do try with DS. I also don't want to ask of them what they can't give…..but I feel that I can't go on the same old way.

Just be really enthusiastic about how you know they love ds, and you know you should have asked before, and then be very specific.

I know I can be guilty of worrying about interfering, so I don't want to get in the way, but if someone says "please can you do X?" Then I'm more than happy to help.

I really hope they respond well. Spell it out. Tell them what you need and see if they step up. They could really surprise you. But even if they just make a token effort, it could help boost you all.

You need time and space to be able to enjoy the good moments. This won't be forever. It genuinely won't.

In the mean time, you need some proper counselling, and you and dh need to find a way to reconnect and kickstart your teamwork again. You are clearly an incredibly team. You've been through so much together. It's time to re-find you. Even if it's five minutes of doing something daft like maintaining eye contact for the whole time (it sounds weird, but it's a quick way to establish intimacy), or check in with each other. Neither of you is alone in this. Stop trying to protect each other, and remember that you both want to be there for the other. You're a team.

No advice to offer - I just wanted to say that you sound like such a fantastic mum.

Sorry I haven't been around (using a different computer and forgot my login). You are NOT a bad person. As others have said, this thread proves that you're not. A bad person wouldn't care for their family like you do, or care for your son even though life is so difficult. Feeling frustrated and angry at your circumstances shows that you're not a bad person, but just a normal human person.

As Toffeewhirl says, CBT would help a great deal, for the reasons they say. You can get CBT workbooks on Amazon...would that be worth a try while you wait to see someone in person?

Thank you all. I am thinking about all your contributions/suggestions & will get back later.

I am looking more closely at CBT as Hopeful and Toffeewhirl recommended, I have started to research it.

But I feel a bit guilty even thinking about myself…..feel that my life now is about supporting and caring for my sweet DSdearboyblue. Nothing can ever be enough for him. There is no real 'me' in the mix, life is about the good you can accomplish.

Yes FYC we are a great team DH and I, I have to say that DH is as devoted a parent, every bit as much dedicated to DS wellbeing, as I am. DS is lucky to have such a great DF.

I haven't decided yet what to do about Xmas. I know my DM will be so disappointed if we don't spend it with her. I may ask sweet DS what he wants to do & take it from there.

I was just wondering how you were doing. CBT and/or other help for you will help you care for your son. You need support to help you do that - nothing to be ashamed of and quite normal. You are a person and matter too.

Thank you all. It has been a hard few weeks….haven't been in touch with my dfamily and I know they feel neglected by me. But I feel such anger which has nowhere to go….nobody therefore to be angry with except those closest to me, which is all wrong.

There is no I…I am fading. I am dissolved, distilled in the doing.

DH got upset with me yesterday evening (not without cause) and said I was a 'stupid cow'. How this echoes what DS called me, that is a unanimous conclusion of those closest to me. There is comfort therefore in not being me…..it means there is very little of me to be derogatory about.

DH apologised, made amends, bought gifts today & treated me to dinner. He knows he went too far, I don't bear any grudges. Anger in a cul de sac.

I am reading up on CBT and I will try to get some counselling through work, will be entitled to this shortly. In RL I am trying to fight back however pathetic I may sound here.

Good to hear you're entitled to CBT through work, Living. I think it would be really useful to you. Do you and DH ever manage to get any time off together? It sounds as if you both could do with it.

Did you ever email your family?

Living you don't sound pathetic at all, for what its worth you sound like you are doing an amazing job. Try not to be so hard on yourself tho, I think we all can be guilty of this when things are tough.

We don't have time off together Toffeewhirl, have a landmark anniversary coming up and DS is coming along too (we have a mini break planned), don't really mind as he is a lovely boy to have around but there is nobody to leave him with.

I don't want to be too hard on myself try, though I do find that my life is so challenging I go into 'coping' mode - just getting on with what has to be done. It is really hard knowing that, however tough my life is, I am luckier than my own DS. I find that life is so incredibly COMPLEX…..the good side is that it is rich, it is dense…..but it is hard to make sense of and I don't know what the purpose of it all is.

I'm sorry you don't get time off together, but I can understand the difficulties involved.

You say you haven't been in touch with your family. But have they been in touch with you? Or do they expect you to do all the phoning? Doesn't sound fair to me.

Can you make sure you do something just for yourself every day, no matter how small? Treat yourself to a bar of chocolate, order a book you want, shut yourself in the bathroom for an hour to soak in a deep bubble bath....

Most of all, you simply need a break from the endless cycle of care, don't you? It must be really hard to just keep going. I think you're doing brilliantly, but you need to heed the warning signs and keep looking for outside support.

Im so sorry you are having such a tough time- forgive me though but I have definitely, 100% read this post before, right down to the train map. Just wondering how that could be

It's an old and ongoing thread, Heap, and the first post dates back to July. Did you read it then?

And yy to taking care of yourself, OP. It's not selfish; it's sensible and important. If we don't take care of ourselves how are we ever going to take care of our children?

I believe a train map may have been mentioned in a previous post also Heap. DS always asks for a train map when we travel and when his things go missing (which they frequently do) it often triggers a meltdown.

DS had another one when he was with DF a couple of days ago…the usual thing, shrieked and swore then pulled the sides/arm rests of his wheelchair and threw them into the road. God help us if this had caused a road accident or if these had hit a child.

I have been at work today & am finding it tough. I don't have a direct manager at the moment (on extended leave) so am having to 'act up' into the role and I don't really have a job remit. I am just getting on and doing what needs doing. It is ridiculous, I have had nothing but positive feedback from everyone and yet I am still expecting a bad outcome, as if one day they will 'discover' how incapable I am really and then I will be sacked. As though the default situation is for circumstances to be bad/go wrong.

BTW does anyone have some suggestions as to how to be more confident/assertive at work? I am in a role where I am supposed to provide professional knowledge & awareness of legal implications, to assist managers in decision making……yet I know things are being done without my involvement & in ways which could be risky to the business. How to insist that I am involved in these processes without being confrontational/in a way that retains their goodwill?

DH has been told his job may be 'at risk'. We will find out mid next week when he has to attend a meeting at which he will be told more.

There is nothing I can do about any of this except just keeping on going. I really do hope my job works out because God help us now if it doesn't. Just when I thought we might have more security and be able to plan for the future;...

I had better get assertive very soon because that is the only way I am going to keep this job, and I may be the only breadwinner. How to get that steely 'I am a worthwhile person' running through everything I say and do? how to locate that holy grail of personal strength? Because at the moment I don't have it and don't know how much to get it. A middling person in an extraordinary situation….that would be me.

I feel such empathy for people who just break down & fall apart, I could so easily be in their shoes and could well be at any time. I understand just how quickly things can unravel if the pressure gets too much. In the meantime I just plod along, and wait and hope for better times…..but if the better times refuse to come 'plodding along' is not sustainable forever.

Sorry to hear about your DH's job. That's the last thing you need. I hope it all works out ok for you.

I might not be the best person to advise on assertiveness, and it's definitely harder when you're stressed and depressed, but I think the key is to focus on what you want to achieve rather than on what you think other people are doing wrong. So something like, "I've noticed that x has happened, which has implication y, and I think we can best avoid any negative consequences by doing z, which I can help with because I can do a, b and c." Most of the time that will work pretty well. If you encounter resistance, you need to find out why, and deal with that. But usually if you frame the situation as spotting a potential problem and offering a solution (your involvement) people will be grateful that you're aware of something they hadn't considered. After all, that's basically why they hired you, and if they didn't think you could do it, they'd have hired someone else! You might feel lacking in confidence at the moment, but there are good reasons why you got the job in the first place: it's because you were the best person to do it.

I hope the planning for your son's future is going well, and that you are getting ongoing help from your GP.

I want to feel I am the best person to do the job Adjustable, I suppose I have to try to act 'as if' I was. I am in a situation where historically, individuals within the organisation have been left to 'do their own thing' which can lead to risk of all times….we are trying to turn that round but in practice there is a lot of resistance to doing things differently. I am trying to focus on what I can contribute & raise awareness of the risks, with varying levels of success….the managers who are willing to work with me are the ones I am least concerned about.

I feel that I have to find a way to up my game and just be a stronger person, to cope with this as well as everything else.

We are trying to plan for DS adult life now, have had follow up meetings re his placement once he leaves school. I am waiting for follow up from my GP….nothing yet but will chase shortly.

DH is due to have surgery on his leg at some point, he is in a fair amount of pain. He is due to have steroid injections to try to relieve this but is apprehensive of this I am sure. What with this, ongoing care of DS and his situation at work I am worried about his own levels of stress.

DH popped out half an hour ago to 'go and buy some flowers', he isn't back yet and tbh I am anxious about him.

DH back now….all OK. He popped in to see a neighbour and left his mobile behind, thinks I was daft for worrying about him. He had some flowers for me.

I really am worried that we are doing an injustice to my family. I feel that they are condescending towards us…..but never sure if I am just reading between the lines? A gut feeling?…but when there is not much of a person left of you it is hard to locate your gut.

I may be wrong, & I do think they mean well.

When DS was born several members of my 'nearest & dearest' told us (very vocally & emphatically) that he would probably die & that would be the best outcome. Nobody else disagreed with this view…..they said that this opinion came from a place of love i.e. that they didn't want DS to suffer or for my life to be ruined.

That is the defence of them that I put to DH at the time….but DH's take on it was that 'they just don't want their nice tidy lives to be disrupted' and 'it's just shocking that they say that while our poor little boy is fighting for his life'. I had just gone through the trauma of DS birth and at one point had been scared that I might die myself, I can't describe the fear I went through. And if we had lost DS it would all have been for nothing.

But there I was emphasising with everyone concerned, fully understanding where each of them was coming from. I just felt, as I sometimes still feel, caught in the middle really, having to explain to each party the other's point of view….in the midst of all that I don't know where I myself stand any more.

Is it true that my life is irretrievably ruined & that they were right all along? I don't know, I adore my DS. There is nothing else to do but get on & do what I have to do, just plod on. When all the fight has pretty much been knocked out of you there is nothing left but the plodding. I just am so tired of feeling like this, I dearly wish it would get better.