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.

I would suggest counseling as you sound a bit as if it is your duty to do all the very hard work of caring for DS but surely like any other ill or unfit person you get carers or someone to help if it's available, or pay for it if you can afford it. Do you have befrienders in your area?

And if you feel guilty for something you cannot change and wasn't your fault eg your DS's illness, then it is unnecessary stress for you. Counselling might help there. Worrying about his future won't help either.

I'm shocked your family don't help. I would def help sometimes to give you a break if it was my DGS or DB.

I met someone the other day who has a CP daughter and the mum works full time in a demanding job with long hours - my first response was 'who looks after the little girl?' but then I realized - why not? As long as the DD is well cared for and happy what does it matter who does it.

Is there no groups of parents with similar children who can get together and share advice, support each other or just let off steam?

I used to find it difficult spending time with my neighbour's dS with CPalsy as I couldn't understand what he was saying and felt embarrassed always saying to the DPs what was that? what did he say? So it might be partly that type of thing that makes people avoid you. They don't know what to do for the best.

Look, people need to stop trying to understand why others are behaving in the way that they do. It's past that now. The only thing we need to focus on is getting the OP to see her GP ASAP. I wish I'd seen this in July. Please go OP.

I am a full time carer for two dc and my eldest is much like your boy eg public meltdowns and swearing. It makes the simplest task difficult.
I find people do react very shocked at his behaviour. Family can't help as my dc are too aggressive. I do get some help from respite carers, one employed by social services and one I pay for. It's not enough but it helps at the time.

I understand what you say about the future and how this will never end (probably will get worse for me.)

Have social services done an assessment of your son's needs and your needs as a carer? Your GP might be able to support you with that.

Hi Living

Just wanted to post to say that your idea of ceasing to be a person really resonates with me (am a carer to a DS too).

It's the first time I have realised that this is slowly happening to me too. You do stop talking about your day to day life when much of it would upset or depress the listener. It's desperately hard to maintain outside interests when 99% of your time is to do with your DC.

We are fighting to get a specific type of school for DS so at the moment he is ALWAYS at home. I fantasise about getting a job if/when he does get a school. I fantasise about sitting quietly at a desk and working, popping to get a cup of tea and having a brief chat with a colleague. What a fucking thing to fantasise about!

Anyway, not adding much here but really wanted to say that I get it.

Just wanted to say that you sound like an amazing person and a wonderful mum. Really hoping you have found time to speak to your gp, you sound low Living and that is not a good place to be.

What you do every day is remarkable but never acknowledged, simply taken for granted; YOU are remarkable yet you get no thanks, just endless worry.

It is a good thing for you to let off steam here, and it shows the rest of us how hard life can be and how much we all take for granted.

Thank you.

Another parent here with 2 ASD dc. No help. No family support. One out of school... totally resonate. Its absolutely exhausting & many days feel pointless.

It makes people feel uncomfortable that having disabled dc is so difficult. Its the reality. If I could send my boys to residential school I would. It would be much better for them. It would mean my 2 dd would have a better quality of life. I could go back to work & have a life.

But they wont go to residential. No one cares. Its the hand I was dealt. Its not fair but its the way it is.

I hope your feeling better today Op.

Sounds really difficult. Do you think anti depression Meds might be needed.

You sound like you are doing a fantastic job, but like many carers, you feel unappreciated and ground down.

Is there a local carers group you can join, to spend time with people who are in the same boat and really get how you feel?

There is a name for what you describe feeling Living (depersonalisation), and it's a sign that you do need help, and at the very least an appointment with your GP to focus on you, your health, and your needs as a priority right now.

I'm afraid for you that if you don't, your body and mind may simply take things out of your hands and force you into rest (through ill health if necessary). It will be much kinder on you (and family) if you can get help for yourself before it gets to that point.

Thinking of you

KeepitDown has hit tbe nail on tbe head. Isnt it quite perverse that the Carer in the situation now needs to be cared for due to her situation, lack of support & services?

Mental health issues are sadly very common in Carers. GP' s just give AD. Go back, they incresse & increase the doses.

I hope the Op dh can get her the hrlp she requires. Sadly shes not unusual other than posting on here. Its very rare I meet unmediated parents of disabled children. I refuse to go back on AD & ive been told by the GP & other HCPs that I'm not helping myself.
My reply is always the same. If they all did their jobs, it would make my life considerably easier.

Thank you all so much for your posts. I know I am not alone and that there are others who have SN DC and have to struggle, and have posted. I think it is really important that we (carers) have a life too but it is hard in practice.

I don't think I would ever do harm to myself because I have to be there for DS. But then there is a bit of me that is proud of coping and stiff-upper-lip about all this which can backfire. I didn't know that there was a name for this condition, I googled it & a lot of the description resonates with me. I have been to the GP and yes I am on ADs already as is my DH. I got referred for group therapy….went back to GP as I felt it wasn't appropriate. I had an initial telephone consultation and haven't heard any more. I know I should go back to my GP to follow up even though it just feels like one more thing for me to do. But you are right I need to take this seriously and go back.

Yes it is really difficult to understand what it is like if not experienced at first hand. And I understand that it may be difficult for others to know what to say/do because it is outside their comfort zone, so they keep their distance….maybe that is what is going on with my DNs though if so I do wish that their DPs were less laissez-faire about it. I do feel with my dfamily as a whole they may be in denial of what is staring them in the face, but it is just a feeling so I may be doing them a massive injustice. But they always want to meet up with me on evenings when they know DS is away, they frame it as 'giving me a break'.

Just read through this thread and I'm shocked at how little support you have Livingtothefull. We must be a very hard hearted society to let people struggle like you do.

Completely anecdotally; a colleague's young adult niece lives in some sort of residential home (severe mental and physical disabilities) and said colleague has mentioned that the teen years were very, very dark ones for her DSis. Fast forward to now and DNiece and DSis enjoy a very positive 'grown up' relationship. Pure third-hand anecdote, but thrown in as one alternative to 'it's only going to get worse'

I really, really hope you get the support you need. I bet you've had years of experience fighting for support for your DS; if anyone can wrestle support from the system, it's you!

ADs are not always the answer. You need to go back again and again until you get something that works for you. If you'd a broken bone that wasn't being fixed despite a cast, you'd go back and seek alternative treatments until you were sorted. This is no different.

I'm sorry you are having such a hard time. Just one point re your family - I don't think it's fair to write them off as unsupportive unless you have specifically asked for help and been refused. They may not realise you would prefer to see them with your DS if they are used to asking you out for 'a break' and you have gone along with this. You post higher up about being sorry they did not help you to carry DS. If I were your relative I wouldn't have offered to help either, because I would feel worried I would do the wrong thing, feel awkward or seem to be interfering, but if you had asked me to help I would have been very happy to do so. I also agree with the pp who said that DS's cousins may be avoiding the gathering for reasons unrelated to him. When my DD was a young teen she deeply resented all family gatherings and it was hard to get her to be civil to her grandparents for a while. She grew out of it. I think when you have such a huge burden it is easy to forget that it is not at the centre of other people's lives and that their behaviour may not be influenced by your DS as much as you think. I hope you find a pathway through your difficult situation.

Please go back to your GP. Add it to your 'to do' list, as you would if it was something for your DS or your DH. You sound very depressed and I'm not surprised. You sound as if you do an absolutely amazing job for your DS and keep the stress of it all to yourself, which means other people don't realise when you struggle.

I want you to come back and tell us when you've made that appointment and then come back again to tell us how it went .

Hello OP, we are really sorry to hear you are having such a hard time at the moment,

We hope you don't mind, but when these threads are flagged up to us we usually add a link to our Mental Health resources - here. Support from other Mumsnetters is great and we really hope you will be able to take some comfort from your fellow posters, but as other MNers will tell you, it's really a good idea to seek RL help and support as well.

We could also move this thread to the Mental Health topic if you would like, where it can hopefully continue to be a source of support.

Hi living,

I'm not going to give you any sepcific advice about your son, because you have had loads, from people who are much better qualified.

But I just wanted to say that you come across like a really, really bloody lovely person.

Not because of the fact that you have a son with really complex needs, and seem to be doing such a great, job with him, and really really care about what's best for him. ( although that also makes you come across as really lovely)

But because in all your posts, you are so polite to people who have helped you, so articulate, and insightful to yours and others situations, thinking about other people's perspectives etc.

Totally independant to you being a parent and a carer for you son, you really do seem very very lovely as a person, and I just wanted to let you know that's what I thought, and that I wish you well for the future.

Dear all

Thank you again all for your posts. Changenamechange - that is such a kind post, I am so touched. It means a lot.

I know that I need to get more RL support, getting it though is a challenge. I have an appointment with my GP Tuesday week (the earliest I could get) so believe me I am trying…but to be honest I haven't high hopes. The support available to us has been considerably reduced compared with a few years ago, there really doesnt seem to be much out there. If (when?) I pass my probation at work I will have access to an Employee Assistance helpline so will definitely give them a try.

Yesterday we had a little more of the same….DS didn't want to eat his breakfast so upended it on the table, then started throwing the apples from the fruit bowl, across the room. He tried to smash the china platters etc on the table - to break everything he could reach & bit me when I restrained him. So I put him in his wheelchair, from where he tried to pull the pictures off the walls. It is not easy to restrain him these days, he is not that much smaller than work.

Then DS school bus arrived so I put him on it…then rushed off to work myself. A typical snapshot day in my life. It all sounds funny written down, maybe I will laugh about all this one day.

….not much smaller than ME

Good to hear you have an appointment with the GP, Living. It must have been hard to make yourself do that, especially when you don't feel optimistic about receiving the appropriate help. Let us know what happens, won't you? And keep posting - it might help to be able to 'talk' here.

Your son's morning tantrum doesn't sound funny at all. What a way to start your day .

You sound battered by it all (emotionally, as well as physically) - and who wouldn't be? It must be so, so exhausting and demoralising.

How is your DH doing now?

My DH is doing OK thanks Toffeewhirl, he is a superlative father to DS….overall I find the way DH copes with it all, little short of heroic.

DH has arthritis in his leg so is in a lot of pain…is probably going to need surgery later in the year. I will leave the question 'How the hell are we going to cope with that?' until later……I daresay we will find a way to cope, we always (somehow) do.

Both of us find it, yes, demoralising. It is not DS that we find hard to cope with so much as all the work associated with caring for him. DS is a wonderful boy and loves life….as I always say, I wish life would love him back a little better.

I think that there is no me. There is a lot of evil in me - at least in the constellation of qualities that can be loosely be defined as 'me'.

2 schools of thought about evil:

1 - Evil is a necessary evil, to stop one from being too insipid. Evil is a condiment for the soul; it is foul in itself (like pepper or fish sauce); but it gives depth to the character. I suppose that this is pantheism; the idea that 'everything (including evil) is par of life's rich tapestry'. Evil is the farthest away from the light, in the existential spectrum; but nevertheless it has a legitimate place. The play of darkness and light; it all gives depth to the character. The character, after all, is what matters.

2 - Evil & good are oil and water; which is your element of choice? You can't have both. I suppose that this is dualism; the idea that good and evil, rather than being the extreme points on a universal spectrum, are in fact different in kind, they belong in entirely separate universes. To return to a culinary metaphor: you choose which element - good or evil - you want to marinate your soul in. Good, after all, is what matters; unless evil matters more.

I incline more towards 2, but am interested in what you think?