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.

Thanks CrohnicallyAspie, I know that I frequently get it wrong in the way I treat DS and your post has helped as I appreciate that the situation is complex and it may not just be a matter of DS wilfully choosing to play up to us only.

I am very very sorry if my post has caused you any distress. You have explained the situation from your perspective and the difficulty we have with DS is that he can't explain how he is feeling/the difficulties he is facing, he doesn't have the words.

I can't control what people think of me & DS and to be honest what people think is the least of my worries. The woman in the bank yesterday gave me & DS a really dirty look yesterday and obviously was not impressed; but oddly that was the thing I have cared about least. I can't control what people think and I tell myself the the people who matter will understand.

Well 1 week later and all is OK, DS has been a happy boy on the whole.

I don't know why I am posting here really, I feel as though nobody really wants to know what I write, what I write is bad and imposes on people. I want to be a force for good in the world, there you are I want toleave something positive in my wake and feel reassured that everyone in my world is that tiny bit better for having known me. But it never works out that way. I am bad at the core despite my (I think) best intentions, everything/everyone I go near threatens to wither. I have to protect others from the badness.

I feel like a misfit everywhere, self pity pours out on this page. I am not like this in real life, I try not to burden anyone. Today a new mother brought her cute little baby into the office for everyone to meet. Some other mothers were of course there, so they started to compare notes on their experience of childbirth, how hard it had been for them etc.

I barely joined in. I just thought 'you REALLLY don't want to know about MY experience of childbirth. I don't want to tell you what it was like for me, I don't want to inflict that on you'. I don't want to elaborate on what we went through at DS birth, but we were severely traumatised by it.

So I was trying to protect them....I spend a lot of time doing that, protecting friends & family from the horror of it. So this is my point; I had to restrain myself during today's conversation because I had nothing positive to offer, just by being myself I would have made quite a few people suffer. I have a perspective like nobody else's. Being a non person, to me, means knowing that what I have to say, nobody wants or needs to hear.

You sound so aware of and sensitive to other peoples' feelings as a result of what you've been through. I can't believe that your corner of the world isn't much warmer for those qualities that you bring to it. Those aren't the qualities of a non person at all. You sound lovely. xx

Thank you Sally for that. I hope that those close to me, are better for my being here but I can never be quite sure about that. I am not alone, many of us have to tread a thankless furrow.

I am scared that I am a bad person, that badness permeates me like letters through a stick of rock. A bad human being wanting to be good even though goodness isn't its natural element.

You have been so badly knocked by life that you sound very hurt. Not bad at all - very giving and thoughtful - but very hurt. Might it be worth seeing if a GP might be able to help? You need a break from those feelings and treatment for depression might help? it's so hard thinking of things from other peoples' perspectives when they don't show any empathy to you.

DH does find me hard work at times and lets me know that. In real life I am a difficult person; I say & do things to annoy him. It is as though I have been put on this earth to annoy everyone. I have seriously upset my dfamily this year.

How to retain one's self esteem in such circumstances? I can't...but if there is no self, then no need for self esteem. I am just a 'nothing that loves DS and talks' a 'voice out of the void'.

Well your dfamily have been awful. Of course you say and do things to annoy your husband. Which of us doesn't ? Especially if we're needing to be seen. You are a wonderful giving person. Please find some help for yourself.

Thanks again Sally, I am trying to get treatment for depression & I try to reach out for help whenever I can and generally I do, although there will always be things which I just have to suck up. And I don't think I am alone in feeling a lack of empathy.

I don't want to take things out on DH yet sometimes I do. DH got really upset with me today even though I was only trying to help. He has gone to bed upset with me.

Between DH being upset with me and DS giving his considered opinion that I am a 'stupid fucking bitch' - given that this is what my nearest and dearest think of me - is it any wonder that I should rather that there was no 'me' to be hurt any more? Better that there is no person with aspiring self esteem to know that she is actually not held in very much esteem at all really.

DH doesn't like what I have to say at times, would much rather I zipped it. Another example of what I have to offer not being what anyone wants.

Nobody much likes the sound of my voice, it is very demoralising.

I can identify very much with that bad fairy at the christening feeling. My DD was stillborn and people don't want to think about that at all.
I read the whole thread and felt very much that you have done a herculean task thus far. Sometimes when you do something really well you don't realise it but when it goes wrong it seems terrible. Everybody gets stuff wrong. The fact that it was notable says it's unusual.
Teenagers are impossible as a rule. Forget the disability and read the teenager threads. If he could stomp upstairs and slam doors, if he could drink cider at a party and fall over then you'd be worrying. Instead you are the nearest and dearest and the target for frustrations. God knows what I'd have done as a teen if I couldn't have stormed off.

Oh you lovely lady, it's so hard , spesh when it started so well, I know exactly how you feel, good intentions but one small thing goes wrong and it all kicks off, just think about the good part of the day with your lovely boy , you arnt a non person but I understand how you feel -and a lot of people seeing you today will also understand how you feel . Just know that in future you might have to cut your special days short of it all goes pear shaped I've had to many times as have many of my friends in similar situations, you are a lovely mum , drink wine and start again tomorrow , love to you both x

It's not what your DS thinks of you though. He's lashing out. What lunatic says is spot on. And I can't tell you how often DH has gone off to bed thoroughly pissed off with me xx

Time to prioritize you. Counselling for sure, and your mood does now sound so low that (even with the obvious triggers) you should discuss with your go whether anti-do would be a short term option.

Have you discussed the teen options with ds's social worker yet?

With his school?

Sometimes we have to get off the roller coaster and hibernate under a duvet for a while, but then it is time to get back on. The fact that you are finding it hard to get back on is an absolute flag that you (you, not ds) need external help. Now.

Counsellor. GP. Make the calls.

None of this is a sign of weakness. We all need help. I saved my breakdown up for about 7 years. But ultimately we have as much right to need support as our children do, we just persuade ourselves that we don't need it.

We do.

GP. Obv.

I just wanted to say something about the cousin thing.

I think it is quite normal once kids are teenagers that they don't want to do the whole 'family get together' thing any longer, so I wouldn't attribute that to them wanting to avoid your DS necessarily.
The rest of your family though, should be supporting you and treating him as a full member of the family.

I have no advice to offer, but my heart goes out to you, and to your DS.

Thank you all for your posts...have been away & just got back. I just can't say how much I appreciate those who have posted here and what you have shared, there are no words really.

I know my beautiful boy is lashing out and no wonder he does. He has had to deal with so much crap in his life and manages to be so happy (on the whole) regardless. There is so little that he can enjoy but what he does have, he loves so much.

Just to respond to a few of your posts....yes we are doing the necessary thru social services & are trying to plan for DS future. I am hoping that it all works out. But we knew that this government would mean cuts, and cuts are the order of the day. When I compare what he has now with what he had a few years ago...there is so much less. And there are a couple of services that DS has, which we are really scared that we are going to lose.

We have just found out that DH health issues have reached the point that he is going to need surgery later this year. Which begs the question: HOW THE HELL ARE WE GOING TO COPE?? Panic...but a non person doesn't panic. She is just a thing that carries on and does what has to be done, no need to trouble herself about whether what has to be done is doable. A 'thing' doing the right things.

Your OH wasn't the one who had to deal with your sons outburst, you were the one who had to cope with it under the disapproving glares of strangers and I think you handled it well.

Thank you happymummyone

I can't say much, I am staggered at how hard life can be. i am just doing what has to be done and I love my DS.

Just a little update on this….

DS is back at school & all seems good, he seems happy to be back & talks about his friends there. We are starting to plan for his future adult life although that is still several years off….I am thinking in terms of residential care plan (although of course we will see him loads, take him out/on holiday etc). But we won't be able to take care of him forever and think it is in HIS interest that he gets used to others caring for him. I am so hoping that we will find an appropriate arrangement for him so will just have to trust it will be there. I feel I am getting near the stage where I won't be able to care for him alone, that makes me sad.

DH is going to need surgery on his leg because joints have deteriorated (probably the years of lifting/carrying DS have contributed to this), he has also had a mild heart attack. He is in a fair amount of pain, has a follow up consultant appointment in 6 months time (that's just the consultation appointment not the surgery) so will go to GP to see if any pressure can be brought to bring this forward. I want to let my employer know I will need time off work when DH has surgery but don't know whether to say anything now or wait until we have a surgery date booked.

DS has had a couple more meltdowns recently, one was with DH & so I had to rush home. The other one we were both there, I had to literally ask DH to 'get him off me' as DS bit me on the arm.

All is well so far in my new job so touch wood this continues. We had a get together with the whole family last month which was all fine, DS was there & was very good. He hasn't had any meltdowns in front of them so they haven't seen him at his worst. I haven't described to them how bad it gets sometimes as I feel it would be disloyal to DS, showing him in a bad light. So maybe it is my fault too that they don't altogether 'get' it. But then they watch us carry DS and, separately, wheelchair up the steps to the restaurant without offering to help? (though maybe they thought we were coping/did not feel physically capable of helping - so maybe I am unfair to resent this)

I don't intend this to read as a litany of complaints/moans and groans, it is simply a list of my current concerns & a statement of the way things are. Still I have this sense that I am not really 'here', I am just watching events unfold and reacting/responding/planning for them as appropriate. It is oddly comforting just getting on with things without needing to run them through the 'poor me' filter first.

I have to go to bed now so that tomorrow I can care for my dear baby boy. I don't know what I am seeking here…..the strength to go on living I suppose. sorry to harp on about this but I CAN'T BELIEVE HOW HARD LIFE IS AND I CAN'T SEE AN END TO IT BECAUSE THERE ISN'T ONE.

Have you been to your GP? It sounds like the worst case of depression. You sound like you may cause yourself harm. Please seek help immediately. Everyone on this thread is in admiration of how you cope. That's lots of people who say it's not your fault. You are a person of worth. Please, please get help.

I'm sorry that your life is so hard at the moment, and has been for so long. I have three friends whose children are now living in residential colleges and their young adults are enjoying living with other people the same age and are supported by carers. I'm sorry I can't help more.

You are fabulous. Many of us reading are thinking that we could not cope half as well in your situation. But you need help desperately, and deserve it. Please go to your GP.