How do you insulate yourself from despair?

[Livingtothefull]

My DS (15) has severe and complex disabilities and learning difficulties, he is my only DC. I find it hard to deal with because nobody wants their DC to be more disadvantaged in life than they themselves are.

A couple of days ago I was out & about with DS and something happened to trigger a meltdown/tantrum. DS screamed at me that I was a 'f---ing bitch' and bit me on the arm a couple of times….really tried to dig his teeth in at my wrist, where the arteries are - although he has learning difficulties he is not daft you see, he knows what is likely to do the most damage.

I managed to restrain him but in the process of getting him off my wrist he tumbled out of the wheelchair and onto the pavement. The wheel came off the wheelchair, I was worried that it was irreparably damaged. My first thought: 'How am I going to get him home if the wheelchair is broken?'. Another thought : 'What if he hurts a member of the public?'. He was out of my control.

DS lay on the pavement, screamed at me, punched and and kicked me and passers by, and tried to bite me again. Then he tried to break a shop window by punching it and bashed his head against the pavement in a frenzy. I tried to stop him damaging himself this way & he bit me again, I have to say that bites are very painful.

At this point a little crowd had gathered, thought that this was all highly amusing & laughed at DS and me.

Some other people intervened & sent the 'little crowd' packing. There were 4 or 5 people who helped (both passers by & people from nearby businesses), they were all absolutely wonderful, lovely people. They helped to restrain DS, put a cushion under his head to stop him hurting himself, fixed the wheelchair, hailed a taxi & helped me put DS in so I could get him home.

The incident took a toll on me though, I was exhausted after & am covered in cuts and bruises. I have a demanding full time job, have to go back to it after the bank holiday and dread being asked about what my weekend was like/what I got up to etc. My family are lovely but they can't understand what it's like….that's not their fault. I tell them about DS, that he lashes out (like many regular teenagers do after all) because he can't express himself any other way and is so physically restricted that not wonder he lashes out. They are just like 'That's a shame'. It's not their fault; there is literally nothing to say about it, nothing I can say about the hurt & feel and no words of wisdom they can ever say to comfort me.

Nothing to be said or done to 'nail' and remove the emotional pain and that's nobody's fault. My experiences are so off the wall, it is very isolating. I know that I will have a repeat of this incident and I am fairly sure that one day, DS will really hurt me. He is getting bigger and harder to handle.

I am sitting up this evening, pondering how I keep going for everyone's sake and ensure that I don't give up or despair. The way that I deal with it is to keep some critical distance between me and my emotional upsets; to be a 'doer' a thing that simply does what has to be done. I live in the zone of 'not despairing just doing' and it works for me most of the time, I have found this strategy works OK but it may not be the best one, has anyone any ideas about what could work?

I don't have any particular expectations for my DS ...

I totally understand and of course you know him best, but can I just mention that's exactly how I once felt about my own DS ... and he's just won an award for progress in independence. It's genuinely surprising what can be achieved, so don't despair too much just yet

As a (retired) employer, I'd also suggest it might be worth being frank with yours about what's happening. Naturally they can't take on your issues, but I've often found folk can be very understanding once they're fully in the picture

And as for feeling you've let yourself down a bit at work ... well, in all honesty, who hasn't occasionally?

Thanks for that Puzzled, & I want to be clear that I wasn't implying that I didn't expect good things of him. I am rightly proud of my DS as you are of yours….and my DS has won awards too. I will never despair or give up on my DS.

When I say I don't have particular expectations, I mean that he does not exist to please or impress me. I love having him in my life regardless, and on top of that everything good that comes from him (and there is lots) is delightful to me!

Yes I will try to have an honest conversation tomorrow & hope that it is well received. They know about my circumstances already but not what the reality is like to live with (& I don't blame them at all for that - it needs to be experienced at first hand). How to explain the difficulties I have at present without it sounding like a sob story & making excuses for poor performance?

My goodness. I have nothing but admiration for you. Please believe me and other posters- you have nothing to be ashamed of. Going into work on a Monday morning and being ashamed- well maybe if you'd got so drunk at a works night out and vommed in the boss' lap. Or snogged a co worker in full view of everyone. Ashamed is not what you should be feeling.

Thanks for that beepbeeprichie I will try not to feel ashamed and will go to work tomorrow in anticipation/hope of support and understanding. Whether I receive it, whether my workplace is even able to grant it - that's the part I can't control.

I hope you get it. Please do let us know. As a manager myself, I know I would give it. Ultimately a work force is made up of human beings. Of individuals. And the best work force is made up of people of different ages, backgrounds, life experiences/ circumstances... A diverse work force. Treating people with respect and compassion should be important both within a team and in how a team is managed. Good luck.

I can only say that I totally understand where you're coming from about the work situation. It's not a confidence thing as such (or when I went through something similar it wasn't confidence as such for me) it was about the fact that I knew I could do a really bloody good job, but I couldn't do it while things were hard at home the way I wanted to. And I HATED it.

My advice is that if you're completely honest with your boss/employee they'll at least know why your work is the way it is. (Even if they don't like it!). Most employers would be happy to be flexible if they're being told the truth and you have minimum standards that you stick to/make up hours/whatever.

Re colleagues-if you knew one of them was going through what you're going through, you'd want them to have some compassion showed to them, wouldn't you? I think most people would be sympathetic and helpful.

Balls. Posted before I'd finished or had chance to proof read!

Ultimately though, you need to be honest with yourself. Can you actually manage with the way things are? And if not, what are the options? You don't have to act on any of the options, but actually laying the all out can be useful.

Anyway, I'm rambling. it sounds like you could do with a break.

Thank you both. DoItTooJulia - I agree that if this was happening to someone else I would be sympathetic & do my best to support them. And I feel also beepbeeprichie that respecting people's diversity and individual circumstances is effective management and ultimately can get the best out of people. So I am not asking more for myself than I would give to others

Ultimately though, I am there to work and in a fairly responsible job…if I don't do it properly this has fairly serious implications. So any compassion extended to me has to be countered by business needs & I understand that. Nobody has actually complained to me directly or said that I am not meeting expectations…but yes I feel I am not meeting my own standards and feel guilty about that.

So I have to think carefully about how sustainable this all is long term. I plan to ask for a couple of days' holiday and see how I feel after this.

I have to get DS to bed soon & then am going myself. Please wish me luck tomorrow.

Hi Living - I've been on some of your previous threads. I have nothing practical to say, but am sending warm wishes. (I still have a picture in my head from something you posted long ago, of DS smiling while you were all out having a meal at a pub (if I've got it right).)

Hallo TheSilveryPussycat, thanks for posting….yes I remember you. Dear DS smiles a lot, we have so many good times too.

I am still sitting & fretting….need to go to bed soon but DS isn't asleep yet so if he won't sleep then nor do we. Fingers crossed tomorrow is OK.

I havent read through all the posts but what I will say is I have been in the same position, my son is 9 and can be incredibley violent and like yours does not care who is watching and at the same time is not daft either.

Having to manage this and full time work, which was mostly with children with disabilities absolutely took its toll on me, I have lost loads of weight as I diddnt have the energy to eat much, always exhausted, not much time to spend with my other children.

I also have a partner that is ill and an older son who could possibley be High functioning that done something really bad last week that was the straw that broke the camels back for me, I sent an email to work and said I could not do it anymore.

Its been soul destroying with no break hence the email to work, I have had 2 weeks off now I think it will take longer to recover.

What I would say is something has to give before you get ill, step back from the situation, decide if you really need to work, take a bit of time off, or have a rest for a while.

I take my hat off to you its bloody hard work xxxxxxxxxxxxxxxxxx

Thank you user147 sending you all good wishes and much respect. I hope all works out OK for you, your partner and DC.

OK returned to work today….it was OK but apparently it has been noticed that I have been letting things slip, people have complained. So I feel a bit mortified that complaints have been made behind my back. How to get back from this and get people's respect again? Has anyone else been in this position?

I am taking things to heart, I know it probably isn't appropriate but at the moment don't know how to stop doing it.

Didn't want to read and run, -although I have no experience of what you are going through.

Were there some positive things said today? Has your employer offered any help? I think I'd be looking at some adjustments to your workload and maybe talking about reducing your hours, even temporarily. I'd be trying to help you plan and prioritise so you have the chance to succeed.

Are there any solutions that you can see? What can your DH do to ease the load on you?

I take my hat off to you, you sound amazing.

Hallo JanetWeiss, my employer has asked me to ensure I am well enough for work, at the moment I am not sure I am. I feel I have a wakeup call and something needs to change drastically, I am not sure though what it is or how to identify the 'something'.

I think that DH easily does his fair share already…e.g. DS woke him up last night so he went to work with only a couple of hours sleep (this is normal for us). DH also has serious health problems of his own. We have already tried to source all the support we can.

Thank you all who have posted for your support.

J

Oops sorry wrong button! I typed a long msg other day and posted but not gone through(useless with technology).
Anyway wanted to just see how you are doing ! I hope you are feeling a bit more clear in your mind about work things. Personally i think it would be good to have some time off to recharge but obviously you know best.

Sending best wishes.

Hi flapjackfairy, yes I have got some time off though not quite as planned. My manager said I needed to get clearance from my GP that I was fit before coming back to work (as they understandably don't want a repeat of last week's episode).

So I made an appointment and saw the GP yesterday…she was adamant though that I wasn't fit for work & refused to give me clearance, instead signed me off sick for 2 weeks (she wanted to make it a month though I persuaded her to reduce it, I am worried about the impact of this on my work future!). So in this respect it seems I don't know best.

So I am on enforced leisure…or at least as much leisure as DS allows.

I am feeling a little sad about something else….but tell me if you think IABU.

I contacted my Dsis as I hadn't seen her for a little while, she responded that we should meet up soon which I agreed so we arranged this weekend. She said she would see if our DM wanted to come too.

I saw my DM yesterday ( btw none of the family know about my being signed off as I don't want DM worried by it) & she confirmed that she could make this weekend and that DB and DSIL were coming too. I am obviously fine with them coming but it does turn it into a different and bigger family get together…was hoping to have a bit of a heart to heart with Dsis but no problem, can do it another time.

Nobody suggested inviting my DH or DS though. They said to me 'maybe you will need to book a table for lunch, where would you like to eat?' as though I had organised it in the first place. So I suggested they ask Dsis what she would like to do.

It does make me a little sad that nobody has suggested they would like DS to be there too, that they would love to see him and how could they support me in making it possible? I have had conversations with some of them before about how to accommodate DS disability; that the challenges are such that he needs to be at the centre of any plans, e.g. when making plans for family get togethers DS needs should be at the centre of these so the first question should be 'Can DS come too? How can we accommodate it so he can come/what do we need to do to make it possible?'

That message is not getting through though, and I think the truth is that they are not that bothered about seeing him. Which makes me sad because DS often asks about them & when can he see them next.

I invited DH/DS anyway because I am not having them left out (different if it was just me, DSis & DM as originally planned); but DH is adamant he & DS are not coming. His reason is that DS may kick off again when they leave but I suspect he also guesses the inclusion of him & DS is an afterthought, and my afterthought what's more not my Dfamily's.

Anyway, tell me if IABU, I am prepared to accept I am over thinking this & being unfair/oversensitive.

I answer this as a parent of 2 boys with ASD& ADHD. Both very challenging /Specialist schools etc.

My boys aren't invited to anything in my family. I dont expect them to be invited. The reality is, I havent taken them to anything like a family lunch or meal in 3 years.

No one can cope. The stress is horrible. They dont eat 'typical' food. They struggle with cutlery.

The boys dont enjoy it.

Dont over think it. We live a different life, in a different world...

I'm so glad your GP has signed you off. You aren't fit for work right now love. Use these two weeks to rest and think about what you need to get better.

I am also glad you've said you will consider resi for DS, that was what was screaming out at me from your first post.

I think you need to get onto your SW and tell her you've had a fit necessitating A&E attendance, aren't coping at work and have been signed off and ask for an emergency increase in DS' respite hours. You/your husband might have to push for it but I think it's worth the fight tbh.

You're not well and if you are going to cope with him at home until adulthood, you need more support than you currently have. And THAT IS OK. ANYONE WOULD. You are not a failure, you are not letting anyone down.

And I would just go and see your family on your own. Even if it's come about because they are crap, embrace the few hours off and enjoy not caring for anyone for a bit.