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?

[mrswhiplington]

Living have only just read your thread today but I am in awe of you. I have no experience of what you are going through but there is some wonderful advice on here from other posters. God bless you and your family. From one mum to another.

[Livingtothefull]

Thank you so so much.

[Livingtothefull]

I have to go to my temp job again and I am scared….want to do a good job but oh how at variance my good intentions are with the paltry achievements are that I actually manage. Where on earth does self esteem come from and why is it withheld from me? I NEED it….need big reserves of self esteem so I can get on and do what needs to be done.

We have had another meeting about DS future. What we want for DS is for him to be in a secure and caring environment where he has appropriate social outlet, and is close enough to us for us to be a big part of his life. When I write it down like that, we are hardly asking the earth are we?

I feel that I am at the edge of what I can handle, I am having panic attacks and feel that I don't want to go on. The fact that I had a seizure, that my mind broke down altogether….is just terrifying.

I feel that I am at the end of what I can handle…..I didn't know that the mind could be pushed too far like this, that there is a risk that it will just say 'I'm not dealing with this any more, I'm out of here'.

[Livingtothefull]

Well the temp work has come to an end anyway so that's that. I can't find anything else…..am I really so unemployable?

Somebody please hand me a grip because I can't get one. I feel that I am breaking down, my mind isn't working for me any more. I am scared every time I am alone with DS, that I might have another seizure & that might endanger him. But I have to care for him now so that DH can work.

The worst of this is, I feel that I am letting everyone down by being unable to cope - letting down DS and DH. But above all I am letting down myself, I feel like berating myself.

I have such little compassion for myself; though it is partly through being treated with very little compassion in the past. I ask above why I can't just have self esteem; the reason I don't, is because I don't esteem myself

[NotTodayDear]

Good morning Living. Sorry, I'm just about to leave for work but I wanted to send you a hug and let you know you are not letting anyone down. You're doing amazingly well but all of us, even the strongest, need a rest and some talc sometimes. When I'm struggling, it helps me to look at what's essential (looking after the kids, feeding us) and what's not (pretty much everything else - I got signed off work last year for a few weeks which gave me just enough breathing space to cope). Maybe for the moment the temp contract finishing will give you that, too. Please don't look at it as a reflection of your abilities. Let some stuff go, do what you have to and try and make sure that list includes some things for you and your own needs and wellbeing.

[NotTodayDear]

Tlc not talc!

[Livingtothefull]

Thank you NotTodayDear so much.

I hope you are right & that I am not letting anyone down….it just feels like it when DH goes off to work in the morning whereas for me (once I get DS ready for school) my time is my own. I can't stop feeling bad about this, & DH health isn't so great also so I feel there is disproportionate pressure on him at the moment.

But at least I got a redundancy/severance payment so I haven't had to ask DH for money….in fact I have been able to give him some.

I feel I am getting near the end of the line re what I can handle….I feel so bad about that & feel I should be harder. DS needs & deserves an emotionally strong, resilient DM who can shrug off most challenges, so that is what he should have; instead, he has me.

We are trying to sort out residential care for DS but it is a long process so need to cope for the time being. DH is reaching his limits too.

[NotTodayDear]

What do you think would help you feel on top of things a bit more? I'm struck in your post by how much guilt you seem to feel, and that you have this overwhelming feeling of not being good enough and letting your family down. Please re-read this thread and take from it just how amazing every single poster thinks you are.

If you look at this time between jobs as a real chance to do something different but still really important, does that help you feel less guilty? The "really important" thing is looking after yourself, properly, however that would best be done - meditation, counselling, gardening, music, long walks, time with friends - whatever helps you get back on top of things a bit more. I'm sensing that, like far too many women including me, you see time and money spent on yourself as a waste, but that just isn't true. You talk in your last post about the type of mum your son deserves (which, by the way, I think you are anyway), so in a sense investing time and money into your own health and wellbeing is doing something for your son, and your dh, so that you can support them as you'd like.

I do hope you can find a way to decompress and get through these next months. This situation isn't going to be forever, and there are some really positive posts on your thread about posters' dc attending residential college etc. Do you have a good team around you to help this move on quickly for your son?

[Livingtothefull]

OK I have taken on board what you & others have said NotToday about the amount of guilt I feel. The idea that my life should be tough - that I am here for the comfort & convenience of others & it isn't all about me - is very deep seated. This originates in my upbringing…..suffice it to say I had a good CofE education, the idea that I exist to serve others was drummed in. It never seems to work the other way though.

It actually feels alien and a bit scary that I could just stop with the guilt and instead enjoy this leisure while it lasts. You are right also that the situation won't be forever, that there may be times in the future that DH won't be working & I will be supporting him….I would be absolutely fine with that btw.

We have a team working on DS future so that should hopefully be resolved.

I need to approach the job-hunt differently; I think that employers can sense desperation. Again I have this underlying feeling that they are doing me a favour by considering deigning to allow me to work for them….yet I am very well qualified in my field & have a lot of experience now. Again this comes for the general malaise, that feeling of 'not being worthy'; I know rationally that it is nonsense but it still informs my thinking being part of the landscape of my soul. How to change that?

[Livingtothefull]

It doesn't come across in my original op…but DS is a beautiful boy too.

I was checking the laptop he uses on Sunday and could see that he had searched 'Mothers Day'; DH confirmed he hadn't done the search so it must have been him. It is difficult for him to spell & write things in, for some reason it touched me so much. On Sunday I got a hug and an 'I love you mummy'.

I do find it hard to prioritise myself; as if I am not important in and of myself but just as a conduit to DS good, secure and affectionate life. It is hard to get out of that thought, I feel as if nothing I do can ever be enough or good enough & that I have to be the best possible DM for my vulnerable son.

[tallwivglasses]

You are doing more than many would ever be able to do. I work freelance - I would never have been able to hold down a regular job when DS was at home. Families with disabled children are statistically poorer - do you wonder why, with all those appointments, forms and sleepless nights? Cut yourself some slack woman!

While you're looking for a placement, get some more support NOW. I'd put money on the fact that you're not getting the support you need is because SS, school, etc think you're coping rather well under the circumstances (and they're probably secretly all wondering how the hell you do it...) Please - TELL THEM your health is suffering/you're cracking up or whichever way you want to put it. Get some respite - short breaks, paid carers. And if you're already getting that, tell them you need more! Honestly, there is a light at the end of the tunnel - but as we say in the Northeast - 'shy bairns get now't'. You, your son and your family have a right to decent support - ask for it.

[tallwivglasses]

...and of course he's beautiful! My son is too - totally gorgeous

[Livingtothefull]

Thanks so much tallwivglasses & I know your DS will be wonderful too. You are right of course & yes I want to be in the place you describe, where I can just be my DS mother and enjoy his (delightful) company.

And we do of course get some respite but will continue to pressure for more. I know that I can't be his full time carer as well as DM, I will just crack up then he will have neither carer nor DM.

It is hard to describe how challenging it is, for somebody who hasn't been there. Eg this morning: awake before 6am, get DS ready & dressed for school (including his 'personal care' with all that that entails!) cook and coax him to eat his breakfast then wait for his school bus whilst trying to stop him destroying the laptop by throwing it around or destroying the front door by trying to push himself through it in the wheelchair.

Now he has gone to school and it is deadly quiet. I am sitting with my cup of coffee and how do I feel? Guilty - as though I am not using my time productively any more. That's just crazy. I am guilty because DH has gone to work despite not being well himself, and I am sitting at home.

[tallwivglasses]

Oh Livingtothefull (I love your username - haha) I've only just caught up with your thread. Oh yes, Guilt. Couldn't we do so much more (if we were rested, unfrazzled, perfect etc)? Hope things have been calmer for you recently.

I kind of feel like 5 years old and want to say 'do you want to be my friend?'

[Livingtothefull]

Feeling really sad & shaken up this morning…..

We have a relative staying, it is on DH side so he wanted to spend some time with her today while DS stayed with me. Of course DS wanted to go with them instead, so as soon as they left just now, DS kicked off again big time. He:

Threw the telephone & Wifi across the room (not damaged by some miracle)
Banged his head across the cast iron fireplace
Upended a large pot plant so there is soil everywhere
Bit & deliberately tore the cashmere sweater I was wearing so it is ruined now
Tried to bite through the electricity cable
Bit me when I restrained him.

Again really felt rising panic that I wouldn't be able to contain him…had to literally sit on him till he calmed down. He is fine, seems calm now which is more than you can say for me.

Not the least bit remorseful of course….I will wait till I am sure he is properly calm then have to clear up all the soil from the plant & get changed.

I just feel really sad now.

[Livingtothefull]

Latest thing to happen is that someone has tried to break into DH car to get DS blue badge…..just what kind of person begrudges DS his blue badge? Luckily it looks like they were disturbed before managing to get the badge but still crowbar'ed the car door so it won't lock now. DH is outside in the dark still trying to fix it.

[Livingtothefull]

I wish life wouldn't hate DS and me so much. Just a little kindness wouldn't go amiss.

This is as good a void as any to howl into….but never fear I will stop soon.

[Livingtothefull]

I would be much better off dead were it not for my DS. My life doesn't do TLC, instead it looks for grounds to punish me and, what's worse, DS. My life has a thousand cruelties up its sleeve for us.

[AdaColeman]

I'm sorry it's all such crap for you, sending you some love.

[Livingtothefull]

Thank you Ada

[OrlandaFuriosa]

Living, can I offer a few quick thoughts, in case they help? It sounds shitty at the moment, hugs.

1 you are doing your best. That's all that anyone can ask.
2 to most of us you sound awesome, we'd line to give you respite, a new cashmere jumper, and a hug.
3 can you mend the cashmere jumper? If mended, you can use it, guilt free for eg gardening,
4, where I come mire into my own, to build up resilience, I tell myself I am doing my best
5 I also have three nice things, easy things, to think about at any point, short, medium, longer term. Short might be a cup of tea in 20 mins, medium might be reading a book at the end of the day, longer term might be arranging to see someone (v hard, I know, if you are a carer) or listening to something on the radio a few days off

6, managing my reactions. I'm not good at it, but trying " respond, font react" and "smile and wave, smile and wave" really helps

7 starting a small project for someone else's benefit, or possibly mine. So I crochet, badly, scarves for kids who don't have any. One if my friends started on that, she still does so but also sells at a market stall, making a little extra money. It's something that can fit round other needs.

8 if you can copecwith the demands of a disabled son like this you are a good organiser and administrator, I won't believe you if you tell me otherwise, you have to be, and negotiator. Think in those terms. Take confidence.

More hugs.

[ploughon]

Hello livingtothefull, I have just read through your entire thread. Your posts were so honest and real for me. I too have had a difficult life and sometimes wonder if things will ever get better. I do not have a child with special needs but have two young children who lost their father to completely unexpected suicide last year. I have returned to work and find it very challenging to keep up performances too. I just wanted you to know although our circumstances are different you are not alone in how you feel. Like you I feel I must just accept what is just is and get on with it. Life is difficult. I wonder if things will ever improve or am I destined for endless hardship. My life so far has been one hurdle after the next. But we have to keep ploughing on.... you sound like a wonderful mom

[AdaColeman]

Hello Livingsorry I didn't post again in the early hours, I lost my bb connection just after and didn't want to go down to fix it at night.

Do you ever read Mark Neary's blog Love Belief and Balls? It's about his life with his autistic adult son and his battles to improve both their lives.
He seems to have more outside help available than you do, empoloying carers with his son's personal budget, though I think at 16 maybe your son doesn't yet get that.
His writing is clever and quirky, and it might lift your spirits a little.

You sound a brave and valiant woman, and I'm full of admiration for you.

[Livingtothefull]

Thank you so so much OrlandaFuriosa and ploughon for your posts, they have really helped me & reminded me that it wasn't a void i was 'howling' into last night!

Orlanda - that's great advice. I am working on being more self confident and working on my responses to challenging circumstances and people. One thing that often seems to help for me is psychologically 'distancing' myself, imagining lots of space between me & them so they can't get to me. I am getting better at this with practice, I am not always as negative as I was last night honest! mostly I just get on with it and intermittently have good times.

Thank you so much for your post ploughon, I am sorry you are having a tough time & hope that you have rl support and that things get easier for you….I am so sorry for you & your DC for your loss. I know that I am not alone and that many others are struggling with differing circumstances, often the most unexpected people who outwardly appear to be (and are!) coping.

[Livingtothefull]

Hallo Ada, thanks so much for posting again. I haven't come across that blog & it sounds really positive, I will definitely look it up.

We do get the PIP benefit for DS so employ carers…they are mostly great with him & closer to his age so it is good for him socially. My hope for him is that he always has good kind & supportive people in his life (as he is an only child).