I need to get my head around this then explain it to my family

[Livingtothefull]

This will be long so apologies in advance:

Recently my family (DB, Dsis, their DCs and my Dparents) had a family get together, which I did not attend. A couple of them contacted me afterwards to tell me (nicely) how disappointed they were that DS & I weren't there….I told my Dsis briefly why I felt I couldn't go & she wants to meet up this week to discuss.

I didn't go for a number of reasons. DS (14) has a severe disability & is wheelchair bound. Going anywhere is quite an undertaking esp in winter….yes we could have ordered a taxi each way but I need to look after DS personal care which means taking at least one full change of clothes just in case, pads, wipes etc. Then the care itself is strenuous, involves lifting him up & downstairs and he is heavy, cleaning him, disposing of waste etc. And getting him to eat is no small thing. Sometimes I feel I just can't do it.

There is a wider issue though…I feel isolated from my family, much as I love them I feel there is little to talk about any more. I don't want to go through the 'We're such a happy family, having such a great time together' and hearing about how marvellous I am the way I cope with DS and manage to be so positive. I feel that I would be lowering the tone to talk about how tough I find it sometimes. And it is not as though they don't also have problems.

I think it came to a bit of a head at Christmas (although they don't know anything about it). We all went to DB house and I was upset that his DCs didn't come downstairs even to say hallo and happy Xmas to DS (or to the rest of us) when we arrived. Just stayed upstairs where DS couldn't access and wasn't invited to join in, and came down for Xmas dinner. But as I say nobody knew how I felt,

It is not that they are not willing to help, do things like help me lift DS etc that obviously need doing. But I am otherwise left to get on with it. I don't feel it is all their fault, we are all busy etc, and I don't want to say anything as the worst thing of all would be for them to put themselves out for DS under duress.

My problem is how to explain all this to my Dsis in a way she can understand. I am not asking for anything, but I just want to tell her how things are & that I can't go on perpetually feeling guilty that I can't just fall in with the rest of the family and go through the motions of us all being happy together. It may be inevitable that I will be more isolated from them & we will all just have to accept it.

How old are her DCs?

Print that op out and takes it with you?

Good luck op, you sound very switched on. I hope your sister gets it.

cozietoesie, they are a little older & younger than my DS, less than 2 years on either side.

DoItTooJulia - that's a good idea. As I say it is not about asking for/demanding anything, I just want to articulate my position. Do you think it is a reasonable one?

Firstly you are not wrong in your feelings and I understand why you would not want to go.

I cannot think of any excuse why those children did not come downstairs to spend time with your son, apart from total rudeness. Their parents should at the time addressed this.

I think just saying what you have here is ample.

Good luck x

You sound lovely, hope it goes well.

Could you invite them to your house so they have a chance to play together somewhere that you are in charge ?

You sound lovely, hope it goes well.

Could you invite them to your house so they have a chance to play together somewhere that you are in charge ?

I don't know your son's mental condition but I do know that some do not like people patronizing them. I believe praising those who care for them over and over again is considered as patronizing.

but it sounds you need help when you have gatherings like this. Don't be afraid to ask for help and where they can help.

People have a habit of ignoring things they don't understand, which sounds like your Dsis and her DCs. You absolutely need to explain the situation to her and she to her DC. I don't think they necessarily mean to be rude, rather they might feel a bit awkward. Get it all out in the open. Your post is well written - just articulate the same to you Dsis

And you should talk their parents about encouraging their children to include your child more.

I know other says to invite them to your house and it is a good idea as long as you and your son don't mind. being out of the house is a good thing too.

Firstly it's appalling that your son was stuck downstairs and his cousins didn't come down of their own accord to see him. Their parents should certainly have called them down anyway.

It must be a hell of a job physically, never mind emotionally, caring for a 14 year old boy who has to use a wheelchair. It's all very well saying you're great (which you are) - you should be able to talk about how hard you find it at times and they should be helping you to come up with practical solutions.

You really need to speak to them about this, before you become too resentful and stop wanting to see them at all.

Do you have any kind of respite care for your DS? Would he accept it?

I know where you're coming from op. I think it is difficult for people who are not dealing with disabilities day to day to see the problems and issues that you come up against.
I think it's great if you have a family that are interested and would make changes to help you be happy and able to join in more.
Are you ready to take this on at the moment though? Or is retreating for a bit the best option? I'm not suggesting anything - I just know these things can be really difficult.

I would find it hard to imagine anybody objecting to what you have said in your op, especially your own family. You're not asking for recognition or praise, or even extra help, just an acknowledgement that your life is practically different on a day-to-day basis.

Do you think perhaps they are over-compensating, trying to think don't make any special allowances for you, don't try to make you feel different ? Of course you and your son aren't any different, you just have extra needs.

I also don't think from how you've posted that you are criticising your family. It looks like, as pp have said, that you just need to be able to get some things out in the open.

living, reading your post my immediate thoughts were that they don’t understand your life and that they haven’t tried to understand your life.
You seem to be very much on the periphery of their lives, and they have conveniently cast you as the stoic mum soldiering on, Its the easiest and sadly laziest thing they can do, it absolves them of any responsibility - its not intentionally cruel, but it actually is..

Its s a very complex thing you are trying to say to your sister

I would probably give her a copy of "The places we'll go " by Dr Zeus..and ask her to read it and think about her children

and then - as her to read it again and think of you and your son
then clearly tell her your life is not like hers and you need more support otherwise they are part of the problem
and you think her life, your life and yours sons life would be richer for it.

When I read your post I got the impression that you've got everything under control and a 'everything is fine' feeling. Do you think this is what they see too? You don't ever speak about it, but maybe because you don't they feel that it's not ok to ask.
If you need help, you shouldn't have any pride in asking because you will be surprised that they might want to help all along and felt that they couldn't.
You say it involves a lot of prep to meet them, but if you haven't explained then how would they know if you need some support.

Many thanks all, have been at work today but have read all your posts. Some really insightful comments here.

Yes I feel sad that DN's didn't come to greet DS….though I suppose from their POV it was their Christmas too, they wanted to enjoy it as they chose. DS has severe learning difficulties too so with that combined with physical disability, he can't really join in things at the same level.

Yes they are 'guilty' of not understanding me always and not empathising with the challenges involved in caring for someone with severe SN….but how could they understand when they don't have first hand experience?

We do have respite care though of course there is never enough of it. I do want DS to be part of family life though.

This isn't about them being 'wrong', more that I need to articulate to myself what it is I want from them and whether what I want is reasonable, and if so, communicate it articulately to them.

Yes I do feel on the periphery of their lives….it is not that they don't want DS and me in their lives, but it seems to be only on specific terms that suit the wider family, rather than being centred on DS needs. But I don't know if I am asking too much.

Eg sometimes the family make a plan to meet up somewhere, in someone's house etc and then they invite me along. So it feels as if they make all the plans and then I get my 'summons' to join in. Whereas it may be easier if they called me first and said 'We are planning a get together. What do we need to do to make it easy/possible for you and DS to come?'

And if things were different - say if DS was placed at the very epicentre of family things and they revolved around his needs - if he was scooped up on our arrival by family members and entertained - that would help. But I feel i can't ask for this as it must come from the heart or not at all. I don't feel that i can insist that they care for DS and prescribe the terms.

That is a very interesting comment ChipDip that I give the impression of being in control. I can say that when it is so important to be in 'coping' mode and has been for a long long time, it is actually extremely difficult to lay that aside. As I say this is not about me being right & my family = wrong, I am sure that there is more I can do to communicate better.

I have dc with additional needs and sometimes you have to accept that not everything can be organised around you. I let everyone get on with it and if I can fit in with the arrangements fine, but more often than not I have to decline. It is hard and you can feel isolated and frustrated that people don't really understand.

From your op I picked up that your family were generally well-meaning but maybe don't know what to do and don't do the obvious which is ask.

Living, please just show your family this thread, you articulate it so well.

And, from my point of view, it's not about DNS christmas and they can do what they want to enjoy themselves. It's about a family gathering and everyone should be happy to some extent. I bet even if your DNS read this (assuming they are old enough) they would feel they had been a little selfish and act differently in future.

I'll give your family the benefit of the doubt, but anyone reading this would understand your feelings completely.

OP you sound a great mum to your boy but being a Coper brings problems of its own I know. When my DS was born with a disability and needed two big operations my DDs were 3 and 1. I stoically managed everything and wore myself to a frazzle. When I inevitably collapsed and asked family for help they were too busy, "but you will cope fine you always do!"

Maybe you need to be more explicit about what is hard for you and DS to manage and ask for practical help like "someone to meet us at the door of the pub and help bring DS inside while I carry the bag of stuff" or whatever.

It is hard to show you need help but harder to manage without it.

I agree with Watchme - that they are well-meaning but perhaps it's a bit paint-by-numbers. I also agree they're lazy about it re trotting out the 'you're so wonderful's (mind, at least you get that!). But family can be lazy and complacent imo. Plus the 'aren't we all a marvellous family' rubbish so many families go in for. It's quite competitive in a way, isn't it? 'Look at us, we're wonderful'.

re the kids not coming down - that's the parents' responsibility. My sister's kids stay upstairs when their grandparents visit and I really don't like it at all, it is so disrespectful. It's the parents' job to make it clear what is expected.

But, all in, it sounds like your family mean well but don't really know what to do; are generally encouraging but overwhelmed with the reality of what you face. Well, tough.

But be prepared they may be defensive. If they're going in for the 'aren't we marvellous' they may feel challenged that you have a gripe, especially about something so sensitive.

You have explained it really well here.

Mind, I get this about being single = different. It wouldn't take much imagination to work out what it is like to be single, or to have a severely disabled child, would it? I am often on the sidelines: what do we do with her?

As a nurse & someone with SN in the family I can categorically say that people in able-bodied familes have NO IDEA about Personal Care.

People do not want to think about someone wiping anyones bum older than a baby. They simply ignore all of that. They sympathise with you about how hard it must be to deal with the behavioural/language issues, and you realise they only think of the person as existing from the waist up.

I remember once explaining to a relative that if I wasn't in the house to offer & give a drink, my person would simply have to stay thirsty. It blew their mind.

I recommend countering the platitudes with a healthy dose of TRUTH. "You cope so well". "At the moment, but I am worried about how long my back will hold out with all the toileting involved" - he's so heavy and its so hard" Cue: Startled Look, which should give some satisfaction. And they'll find it impossible to Unhear.

People might not be able to practically help, but they can be considerate. However that requires them to yank their heads out of the sand, and they won't do it voluntarily.

The personal care is just so so hard…I don't blame them for not understanding that. And I find it really oppressive being thought of as 'wonderful' and a 'coper' all the time and feeling I have to live up to that. I want a route out of it but somehow when I look for one it is hard to find.

I was talking to my dfamily about difficulties bathing DS the other day, because of care aspect he has to be bathed a lot. Lifting him in/out of the bath, soaping/rinsing/drying him is not easy.

I told him not to splash the floor (as I tell him every time so he knows it is bad), when I popped out of the room out of the moment he emptied half the bath water on the floor with the jug used to rinse him. I came in and gave him a loud telling off (don't know what the neighbours must have thought if they heard me yelling), whereupon he deliberately poured another jugful after me so I was absolutely soaked, had to change my clothes.

Then on to drying & dressing him then cleaning up the swimming pool on the bathroom floor. Then it turned out I had to do his personal care again once dressed, and change HIS clothes again. That was my whole morning gone.

The thing is that when I told this to my family I found myself turning it into a joke, an 'anecdote from the rich tapestry of my life'. And what I got from them was more 'You're so wonderful the way you cope and stay positive'. So - communication failings on both sides.

Then I think that we all need to communicate more honestly. And then I think 'But communicating honestly will mean communicating my hurt at DN's lack of interest in DS….basically, criticising their DC to them and showing moreover that I have been brooding over it since Xmas. I don't see much good coming from communication like that'.

And yes the 'We are a close, loving, wonderful family' thing I have had a basinful of. Though it is not untrue either - my family are a collection of loving, sensitive people, we love each other and plenty of wonderfulness resides there. So if I were to challenge that it would be difficult to establish the grounds and easy of them to refute what I was saying.

Just say what you've said on here. Sounds like you really need at least one person you can be honest with. Doesn't mean it always has to be doom and gloom, but you may build a deeper, more meaningful relationship from confiding in her.
FWIW I find get-togethers really hard emotionally because of the constant reminder of what life isn't like (if that makes sense). (Ds - 8 severely disabled)

You don't have to challenge it. You just have to not turn things into a funny anecdote. Turn it into a different sort of anecdote. Change the tone. Not complaining (as there's no point), but definately acknowledging it was a hugely stressful morning.

You say they are sensitive but I say they are being conveniently and selectively obtuse. And the cousins thing was just fucking rude, and your brother and his wife were rude not to make them come down. They may murmur all the right words, but their actions suck.

It sounds stifling, not even being able to express discontent. Thats controlling the tone of the family to a staggering extent. Who does that come from? You should be able to have said to your brother "can't they include DS?"

Look, if you want to let it go as its been a couple of months since Christmas I understand. But the next time it happens (and it will, as the cousins clearly get away with bad manners towards guests in that house) then say quietly it might be more fun for DS if he were with people his own age during the visit. And sit back and see what your brother does. If anything.