Our Christmas

[Livingtothefull]

Bottom line is: I had a lovely Christmas because I was with my loved ones.

But our life with disabled DS has challenges which are hard for others to identify with so v challenging and often painfully isolating.

My DS is 17, has severe learning disabilities also physical disabilities & is wheelchair bound. On Xmas Eve he is so excited about Xmas he didn't sleep at all, so neither did we. He came downstairs in the middle of the night after DH had tried in vain to settle him; DH couldn't tolerate it any more so I took over.

DS can't be on his own safely so I had to come down with him & lie on the sofa…DS was all over the place. He had severe diarrhoea & as he is incontinent so I had to change him twice and rummage around for a spare set of pyjamas as he had soiled them. Didn't really sleep at all.

Next morning DS raring to go, his parents not so much. We were due to go over to my DM's for the day in the morning…this has become the family tradition over several years since before DS. All the rest of the family were already there (unlike us they had stayed over). DS had diarrhoea again and was literally covered in it, all down his legs and on the sofa (luckily a leather one). It took us ages and was a disgusting job to clean him & everything else up, bath him and then shower him down. I hate seeing him in that state too.

I called my Dfamily to explain why we would be late, they didn't say anything but I felt they were disappointed and put out…from their point of view, it may have seemed as if I was making excuses to spend as little time with them as possible.

I explained a bit of what we were dealing with but I didn't want to put a damper on Xmas or put them off their dinner, by describing the full horror of dealing with the diarrhoea of a near adult, I felt it would be in bad taste.

When we finally got there we had a really lovely time although we were all shattered & yawning.

I know that dfamily were disappointed that we didn't stay over as well, from Xmas eve until Boxing Day (so they are still all together now). But if we had had to deal with this situation in someone else's house I don't know how we would have coped; also nobody would have got any sleep.

So although I had a great time I do feel a bit isolated as I don't think anyone in our wider family realises what it is like to deal with. Although I love seeing my family I don't think they realise that just going to see them for the day is a big undertaking for us; it feels like everyone wants to do things the same way they have always done, whereas for me having DS has changed everything and I would really like everything to revolve around his needs, so that these are at the centre of family plans.

If people could just say 'we would love to spend time with you and DS: what can we do to support you & DS to enable that to happen?' rather than doing what they have planned & expect us to fall in.

AIBU to feel this way? Please tell me honestly if I am expecting too much.

You are definitely not being unreasonable!

I am guessing your family do not understand. They don't know the full extent of his condition. You need to explain before the next family event exactly what you and your dh are dealing with.

I know you love your son but you have got to be honest with others.

Also, can I ask is the dioahreah a common occurance or a one off? Do you know what triggered it?

I am going to sound very heartless here but what are your long term plans? Do you have respite care? Do you have a chance to see family without your son?

What you describe sounds hugely exhausting. I hope now he is nearly an adult you have some plans to have help and time with family without ds occasionally, because it sounds like an awful lot to deal with.

Please do not be offened. I am a total stranger so I can say rude or uncomfortable things! With good intentions.

I'm so sorry that you have had such a trying time with you Ds, you seem to have coped remarkably, considering the circumstances.
I can see how it would have been impossible for you to have stayed over at your Dm with the rest of your family.
If I was you I would let Dm and any siblings you have, know about the struggle you had on Christmas Eve. You said that you did not tell them in detail what you have been dealing with.
They need to know, in detail.
Then they can choose to either help somehow with your son or at least will be more understanding of how difficult it is for you.

Thank you both. We are in the process of making plans for DS future Italiangreyhound as we recognise we won't be able to do this for ever….tbh that is a whole different thread, DS will be leaving school & going into the adult system.

I have tried to explain what dealing with DS disability is like ItsYuleme, though it is hard to understand thiswithout first hand experience….I get that. I don't ask for or expect any practical help from them, or from anyone, I know people are busy & have their own lives.

I just feel vaguely misunderstood; they think I am isolating myself from them by choice, whereas I feel that our experiences are so different that I am isolated by circumstances not by my own personal choice.

I know this sounds probably awful but have you considered a residential setting? I have worked with adults with a learning disability and residential homes are a lot better than people think. Many parents said to various staff that their mental and physical health had gotten a lot better and some marriages saved! Even regular respite could be good. Can you continue this in say 20 years? Please don’t flame me for my suggestion!

I know that this can't continue indefinitely fantasmasgoria1, we are looking to the future for DS. It isn't in HIS interest to stay with us forever (quite apart from ours)…he is a sociable boy, I would like him in some kind of residential or college setting where he can mix with other young adults, be cared for & have fun.

I just want to enjoy spending time with him without all the burden of the care…it sounds selfish I know, but also he is an only child with no siblings & we just won't be able to look after him forever. If he is happy then I am happy, so at some point he will need to transition to a new happy place. As I say a separate thread altogether…I hope such a place exists for him.

Families not understanding how difficult basic everyday tasks are appears to be a common problem for people with children with additional needs. I don't get it myself, it's obvious to me that it must be one of the most difficult things ever especially as they grow from child into adult.
Most parents have put in countless sleepless nights with babies and sick children but luckily our children out grow these stages and really they're just a moment in time. I can only imagine how hard it must be when this is your life day in day out with more added complications than I could contemplate.
You shouldn't need to have to give your family a running dialogue of your daily lives in order to have them realise that caring for your son is to put it mildly very demanding on just two people
I'm not going to pretend to understand just what it takes but I will take your word for how very difficult it is and that's what your family needs to do.

I don't understand how your family can't understand how difficult this is for you and do more to help and understand! I have no first hand experience but just a few paragraphs that you've written I can get a feel of how hard it must be for you. I often thought when mine were little and ill how people with children with chronic illnesses or with special needs coped with it all the time. And your 17 year old has probably been the size of a man for a few years - totally different from changing a toddler's bum.

I really hope you find a residential place for him so you can get some respite and like you said, enjoy him without having to do all the care.

Sounds firstly you are doing a great job. Your post shouts respite to me. And a review of care needs to give you a break for starters. You're amazing.

I think you need to tell your family it all, ask how would we cope if the whole house was up on Christmas Eve, all nigth because ds was up? How would I cope with diarohea on your soft furnishings. I think you need to spell it out. You may find they do understand perfectly and you are projecting your own fears they do not understand.

Good luck with telling them.

Thank you all, your posts mean so much to me I am sitting here getting teary.

I wish I felt amazing, I have felt stressed out lately by this and just feel downtrodden and worn out. I am off work at the moment, am aware I made a huge mistake at work (an oversight - something I failed to do rather than something I did - but could have potentially serious consequences) and feel I just can't cope with it all, more stress from yet another quarter. And guilty as well. I will have to go back in a few days' time and face the music…and probably a disciplinary.

Then I look at friends & siblings & in laws with their good careers and 'sorted' lives and I just feel inferior. The nature of my life is such that the job I do can never be good enough - or at least I am not good enough to do it.

I have tried to explain some of the stuff we deal with. It gets far worse than diarrhoea….I have posted previously how DS has got angry and frustrated and physically attacked me, hitting & biting me (he is a teen after all) and they don't know what to say to me. Then I fear that I have made things awkward for them and (worse) betrayed DS.

You have not betrayed your ds by being honest about what you face. You have not made things awkward for them. Either they don't get it, and you can't make them understand. Or they do get it, and you are worrying unnecessarily about what they think.

Why not focus on what you can control.

I don’t know where you are in the country and you might already know about this but independent support services are for families exactly like youwith teen children ready to transition into further education in the best setting whether it’s partially/ fully residential schools or alternatives.
Click on the link, there’s a map directing you to contacts in your area.
Good luck you sound absolutely lovely and you clearly have your son’s best interests at heart x

People being what they are, I suspect they don't really "take in" how hard things are for you. Because if you were struggling and they knew about it, they'd feel bad and impotent. Possibly might have to help consistently. But if they can be head in sand/let it fade from the foreground about it, then they can go on as normal.

Thank you again…it means so much to feel I am being heard, I am not really used to that.

Although since Xmas a couple of family members have just given DS a lovely treat, they went out of their way to find something that he would like. So the will is definitely there with many of them.

I just want to feel stronger and less a victim of circumstances….I think I am disappointed in myself & projecting that onto others, I feel that I should be able to cope & sometimes feel that I just can't.

I think that certain people sense that I am finding it difficult to cope and home in on that; I have recently been quite openly criticised and sneered at from certain quarters.

I am fretting about the mistake I made at work, that I am going to be in trouble for it. I am literally hallucinating with the stress of this, & caring for DS in the meantime.

So I feel like a failure. I want to get to a place where I am successfully holding down a challenging job whilst ensuring DS has a secure future, and I feel I am failing at that. So then I want someone to swoop in and 'save' us…that's never going to happen.

I want to be an achiever, a 'doer' somebody that the world can rely on. But at the moment I am in a difficult place. I feel forced into the victim role rather than that of a doer. Yet circumstances don't allow me to be a victim; my life demands that I cope somehow, otherwise there is nobody to save me. I just have to cope or I will go under; but at the moment there are often times when I feel I just can't cope.

How do you get your courage and self esteem back when they arbitrarily decide to up sticks and desert you?

Hi OP, you are literally amazing. It is so sad that you do not knoe that.

"I think that certain people sense that I am finding it difficult to cope and home in on that; I have recently been quite openly criticised and sneered at from certain quarters." Do you want to share these things so we can reasure you?

"I just have to cope or I will go under; but at the moment there are often times when I feel I just can't cope." This seems very normal when dealing with a very demanding child, almost an adult. Please ask for respite care or whatever help is available.

"How do you get your courage and self esteem back when they arbitrarily decide to up sticks and desert you?"

I think it takes time. Is counselling an option? What about assertiveness training?

When do you find out the upshot of the work error?

Pm me if you want to chat. I'm a bit fan if positive thinking. I think you can possibly think yourself into a new attitude. But your current work load sounds so hard.

Was the work mistake a one off error of judgment? We all make mistakes. Was it life threatening? Money related? Don't day any more than you can safely say.

Hallo Italiangreyhound and thanks so much for your response.

Just to answer some of your questions:

I would love to feel amazing; it would I think be a huge help in being amazing. But it is as though I have a Teflon soul; nothing sticks. It is as if I have no foundation on which to even start building self esteem. And many things & people in my life conspire to remind me that I am very very far from amazing; not least I myself. But I don't know how to start turning that around.

I have brought up a disabled DC, held down a full time job and gained a professional qualification over the past few years, whilst being a reasonably good DW over 20 years, at least my DH doesn't complain (much). Objectively I think that measures up reasonably against many other people's achievements; enough to believe at an intellectual level that I am experientially & morally on a par with most people I meet.

But it never works out that way; it is as though a 'confidence thief' swoops in and takes away what I have rightfully earned so that I feel as uncertain and undermined as ever.

I think that there are certain people who can smell out fear and target people who display it; that's my theory anyway. There have been some instances where I have been pulled apart & made to feel small (e.g. in work meetings) in a way which doesn't seem to happen to anyone else.

The work mistake was negligence rather than an error of judgment. It was a one off and due to having a high workload and missing something important as a result. I doubt it is life threatening though it could indirectly affect someone's well being.

I just can't seem to break out of the cycle I am in. I would willingly consider any counselling or training which could help me; but as I am time poor (DS plus demanding full time job) I need to be assured that it will directly benefit me.

Can you feel all the negativity in what I am writing? Also, how it is focused on me? How to turn all that around eh? I would love to know how…it is wrong to feel like this, it is a character flaw which I would dearly love to be rid of.Maybe I shouldn't be writing in this way; I am being open about what I am thinking but do I need to think differently & dwell on different subjects, and if so how?

Can I ask, have you had any success with positive thinking; i.e. has it directly benefited you?

I am sitting up here fretting; as I often do of an evening.

Please talk some sense into me, tell me all the reasons why I shouldn't give up hope.

Do you think there is anything worthwhile in me at all? I am sorry to be so selfish about this; why does life have to be so ff--------ing hard? I am like my dear darling happy DS; he loves his life so much, I wish that life would get its act together and love him back.

Talking at a void in the dead of night:

I don't think I am all that bad a person. But I wish I were a lot better than I am. A better person than me would be doing & saying all the right things, would be taking DS care & her work in her stride.

I am not the person I need to be, that DS deserves. He can't defend or support himself so he needs as his DM a heroine that is scared of very little least of all of other people, and can fight for his best interests. Instead he has this lumpen fearful person as his DM who is afraid of so much. I am just not good enough for him.

OP I mean this in the nicest possible way because you are clearly an amazing human being but maybe you're reading into things the wrong way. From what I have read, your family haven't outwardly stated these things, it's more of an assumption that you've made. Sometimes if you're anxious, stressed, tired, worried etc. you can take small things (gestures, phrases) as they weren't intended. I hope that's the case anyway as otherwise they are not very nice people.

I have brought up a disabled DC, held down a full time job and gained a professional qualification over the past few years, whilst being a reasonably good DW over 20 years, at least my DH doesn't complain (much).

You are amazing, you clearly don’t see your self in this way. You’ve just listed these amazing things yet still are unhappy.
I have limited understand of disability, but due to an accident in August had first had experience of it and caring for the disabled, I could absolutely, 100% not do what you do. At all.
Have a look at positive mindset books and notebooks such as The Happiness Planner, I used this and found it helped me tenfold, however I am notebook/list/writing inclined.
Keep doing what your doing, be honest with Work (would here be a possivty if counselling/occupations health etc through Work which won’t invade Time at home?) be honest with family, keep being honest with yourself, you’re doing a fantastic job

And, it’s nearly 1:30am! Get some well needed rest and sleep!!!

I couldn’t read and run.

You are truly incredible. I can relate to the confidence thief. I really think counselling would help you. You have been through so much and you’ve said you don’t get much, of any, time to yourself.

You may be suffering with exhaustion which could have led to, or exacerbated, the situation at work. Are your employers sympathetic to your home life?

My heart truly goes out to you. Try to get some sleep if you can

Living I am sorry you have experienced these things.

"Can I ask, have you had any success with positive thinking; i.e. has it directly benefited you?"

Well, yes, as a teenager I was very shy, dyslexic and found school very hard. I went to further education and just decided to be different. I had made some new friends and I went from being quite a sad (depressed but not really, maybe melancholy type thing) person to be being much more confident.

I'm a Christian and lucky enough not to be in the kind of churches where one feels very bad about oneself. But rather, over the years, church has been a place to get inspired, meet new people, feel good about myself.

I've got my insecurities too! I've got an eating disorder and am getting counselling for it. I've had OCD, and anxiety. So not someone who is always confident by any means! About 25 years ago I met someone who told me we could decide how we felt bout things life threw at us! I didn't believe them. And yet as time has gone on, I have seen that it is possible to find a positive spin on some things, and to feel positive about oneself.

The biggest thing I've found is that negative messages to oneself about life or about yourself, do not have positive impacts. Possitive messages may also not necessarily have positive impacts but they have much more chance of a positive outcome.

So for example, being realistic but optimistic about things, telling yourself good messages. Looking in the mirror and finding something nice about yourself to admire. These are all helpful.

I could find some research on this but for the moment - Girls going into a maths exam who were 'reminded' of the stereotype that boys were better at maths, then they did worse than girls not reminded of the stereotype! That's an example of negative stereotyping but also of negative thinking to me.

www.reuters.com/article/us-maths-girls/girls-do-badly-at-math-when-told-boys-better-study-idUSN2242207920070524

www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/positive-thinking/art-20043950

This is good...

""Positive self-talk is not self-deception. It is not mentally looking at circumstances with eyes that see only what you want to see. Rather, positive self-talk is about recognizing the truth, in situations and in yourself. One of the fundamental truths is that you will make mistakes. To expect perfection in yourself or anyone else is unrealistic. To expect no difficulties in life, whether through your own actions or sheer circumstances, is also unrealistic.""

It's from www.psychologytoday.com/blog/hope-relationships/201605/the-power-positive-self-talk