To feel hurt by this?

[Livingtothefull]

Just a little background firstly - I have several issues going on so I want to be clear if I am being oversensitive or am justified in feeling hurt by this:

I have one DS (20) with severe physical and learning disabilities. My DH has recently had a diagnosis of a degenerative condition which is worsening. So we are worried about what the future holds and trying to make a long term plan for DS care. My family know about some of these issues albeit not exactly how stark they are.

I do feel that my family are detached from what we are dealing with, but I understand that for anyone who is not closely involved in this it may be hard to empathise - also appreciate that they have problems of their own, I don't want to find fault with everything they do.

We held a recent family get together via ZOOM. During this, DS had an 'emergency' needing urgent care (as he is liable to have) so I had to detach from the call and attend to him. When I rejoined I explained what had happened and got a bit of embarrassed laughter, then awkward silence. Again I am trying to be understanding - I felt they were irritated but they may instead not have known quite what to say.

We rejoined their conversation and then DS started talking loudly, this is his way of contributing as best he can given his comprehension level. A couple of the family said 'Living can you put yourself on mute?'

I just feel really hurt by that, I am dwelling on it. It made me feel as if I & my DS were an inconvenience, that we were a distraction from what everyone really wanted to talk about. Whereas I don't want DS to be an afterthought, I want him to be at the centre of the family if that makes sense.

Please let me know if IABU and expecting too much? What can I do to make this better?

Oh gosh
Do you feel like this often or was it as one off?

I feel like this fairly frequently @purpleme12. I often come away from these conversations feeling vaguely put down & sad - as I say it is hard to pin down why this is.

But he isn't the centre of the family - he is presumably one family member of many. It's difficult to judge without being there. If they asked you to mute him every time he spoke, that would be awful. If he was speaking constantly and it genuinely meant that other people couldn't interact, I think they were reasonable to ask. I'm really sorry to hear about your DH

Yanbu about the mute thing, that was not nice of them at all. But about the part they don’t seem to be concerned do they really know how it is? I have a friend with a partner in the military that way away from home with a young child. I consistently asked how she was doing, and just as consistently answered she was fine, the child was fine, there was nothing I could do to help, etc. Every single time. Well after a few months of this I forgot to ask, I didn’t offer help because I was sounding like a broken record, plus I had my own baby.

Years later she told me her ‘partner’ that was angry because he was gone for so long and no one was helping her. I was aghast. I thought, well then *ucking SAY something. When I offer help take me up on it. If people don’t know how it really is you can’t blame them for being unconcerned…if that is the same with you, it might not be at all and in that case yanbu about that too!

Thank you for your posts.

I don't ask for any practical help though @Wrenna, I don't expect it....I know everyone has their own issues. I just want to feel cared for. A few individuals do & the caring (where offered) is unmistakeable.

I don't feel that DC monopolises the conversation @Sapphire387, anything like to the extent that others can't interact. I don't think that I am asking too much that they engage with him, just so he can be included. He just wants to join in.

It is very hard to explain though how it is with a severely disabled person like him; it is really difficult for him to access interactions at all, unless his needs are prioritised.

I don't think IABU to expect this (I obviously don't at events that are focused on other people eg weddings, birthdays). My DS can never be 'just another family member' .

He is your priority, of course & your world prob revolves around him due to his needs. But the rest of your family won't have that mentality tbh, much as they love him. It's also hard for people generally, not just family, when every interaction is about one person or the main focus always on that person , whether that person has special needs or not. He can't be the centre of everything all the time , neither can anyone , in a healthy family dynamic.

Do your family understand that DS is trying to communicate with them and it'd be lovely for him if they respond to him ? It may be that they think he's simply making noise for no reason and therefore ask you to mute so that they can hear others talking. They're not realising he's also talking with them?

Ofc DS can't be taking over everyone throughout the video chats but I don't think that's what you describe he's doing

Can he communicate or is he just trying to join in without trying to convey something ie that it might go...

So convo could be
Aunt jo: so it was rainy when we were watching the boys match
DS: (vocalising but not words)
Aunt jo: yes that's right DS it was so cold...
DS: (vocalising)
Uncle Bob: yes DS just league football
Cousin Fred: I scored two goals ...

When someone is learning to speak there's the element of trying to interpret what they are attempting to say from noises but also body language and context- but also responding to them as if they are talking words. It's very rewarding for the person who can't usually join in to feel part of that pattern of noises and melody that social interactions are.

You’re being a bit of both - on one hand you’re absolutely not unreasonable to feel hurt that they’d ask you to mute yourself. On the other hnd YAB a bit U expecting him to be the centre of the family. He may have additional needs, but that doesn’t mean your extended family should revolve around him