AWBU - younger, disabled sibling not invited to family party

[FranceIsBacon]

We've got 2 daughters, very close in age. My SIL has a DD of a similar age with a birthday coming up.

I got a message yesterday asking if DD1 was free to attend my DN's party. I replied that yes she was, and could we bring DD2 along with us, because otherwise only one of us could attend with DD1 and the other would have to stay at home with DD2. My SIL replied not to worry about that as we could leave DD1 at the party and 'have a break' (LOL).

The back story is that DD2 is profoundly disabled - physically and mentally. If she wasn't I'm pretty sure she'd get just be invited along like her older sister. After all they are all family. In my reply about bringing DD2 along I explicitly said not to worry about catering her or entertaining her (we worry about all that) but I'd have liked her to be welcome and to be present at the party.

When my DH found out about this exchange of messages he was raging and has messaged his sister this morning to say sorry, DD1 can no longer attend. I tend to agree with him if I'm honest.

The deed is done now but AWBU? DD2 is often overlooked even by family, her birthday forgotten, etc, and it does get to us both so maybe we're just being a bit precious about it. The irony is we've just moved across the country to get more support from family!

I feel like I'm too close to the situation to judge so I'm taking to Mumsnet to get some opinions. Please be gentle!

We have a disabled son , we do get excluded a lot .

Those of you that want a sibling chat board, but are worried about the effect on parents with disabled children, maybe join SIBS (the charity for siblings of disabled children/adults) and use their forum. It's relevant, it's private and you can speak freely.

FWIW I'm personally leaving this thread now feeling thoroughly disheartened that the general consensus seems to be having a sibling with a disability is utterly shit. Reading comments like Devilish saying they will find ways to 'give back what they've lost' just breaks my heart. I know I seem to be in the minority of lucky ones here on this thread who genuinely feels I didn't miss out on anything having a sibling with profound disabilities, but it's galling to imagine my parents feeling that way when they have absolutely no need. Good luck everyone and I wish you well with all your lovely families xxx

I guess this is how my siblings feel about me. I always thought I am sister and friend and it doesn't matter if I have a disability or not to them. (I know it is different when are teen and want to do your own thing but who doesn't? Even I felt that way) but who knows? Maybe they do feel resentful and wish I was a hearing sister as they watch other siblings enjoy each other company

zzz if I posted about eg the brief spell dd was used by a crap teacher as a ft 1-1 for a child with very complex needs, I'm sure you wouldn't appreciate being told that as a parent to a child with sn your opinion wasn't relevant to the thread and you should instead discuss your concerns in another safe space, you would be quite reasonable to think you were being silenced and dismissed.

I appreciate that the motivation of anyone telling you to post elsewhere in the above scenario would be at best ignorance, or more likely because they were a twat, when in this scenario the motivation is supporting the other parent. But whatever the reasons for it, it is still effectively trying to shut the other view point down.

I disagree with you on the subject of who should be allowed an opinion, that doesn't mean I want to put you or your opinion down, or that I'm parent bashing.

FWIW I'm personally leaving this thread now feeling thoroughly disheartened that the general consensus seems to be having a sibling with a disability is utterly shit

Nope. No one in my house feels that way.

Potato - my son's have gained an enormous amount both directly and indirectly from having a disabled sibling. For years they had a very close relationship and they care about him a lot. Unfortunately at the moment they can't be in the same room as him and ds1's care providers letting him down in a big way meant that the younger two has to lose their first ever proper holiday AND now need to move out of their home for a few weeks.

That doesn't take away from the positives (& I could list pages) but it does need recognition that it's a shit hand due actually to the profit before people nature of care in this country rather than anything to do with ds1 himself. They get that and they care about their brother - but it's still a bummer.

And by 'make up what they have lost' I mean go to Alton towers or London for a weekend or something. I'm talking about the loss of a holiday and some fun time with us rather than anything more profound!

I'm the oldest of three girls, and my youngest sister has Down Syndrome. My dad and step-mom used to have this big Christmas party every year, primarily for a few friends and then my SM's large family. My ex-husband and I lived on the same island as my dad does, my mom across on the mainland. The arrangement was that sister would come stay the weekend with us so as to easily attend the party.

My mom called to say that my dad had spoken to her and it had been decided that it would be better if my sister didn't attend the party as there would be a buffet table and he and SM didn't want to have to spend the whole evening policing her food consumption.

My god did I call and read him the riot act. How very fucking dare he uninvite his own child to his Christmas party?! He knew very well that I always have an eye out for her and wouldn't have let anything socially unacceptable happen regarding food. I can't recall the conversation exactly as it was over 15 years ago, but the upshot was that if my sister wasn't invited I certainly wouldn't be coming with his granddaughter.

Minds were changed, apologies were issued and everyone enjoyed the party. Although I did give her a strict talking to about party food rules before we went in, lol!

FWIW I'm personally leaving this thread now feeling thoroughly disheartened that the general consensus seems to be having a sibling with a disability is utterly shit

This is nonsense, I'm sorry. Some of us posted about our experiences of the difficulties of being the sibling in this scenario because there were posts which were, IMO, painting the sibling's position in these cases as though OF COURSE the siblings would ALWAYS feel x, y and z, when that isn't the case for many people. I thought there were a lot of helpful, thoughtful posts, and I learnt a lot from people who had good experiences of growing up in this type of family as well as those who had more mixed experiences.

But hey-ho, I'm an adult now, approaching menopause, my parents are long gone, and I am still having to provide care for a sibling, and still being told that I'm wrong for discussing it as anything other than a rosy, positive, inspiring experience. (And of course, now I have my own disability to factor in! Fun!) Plus ca change, plus ca meme chose.

zzz you misunderstand me. I'm not objecting to the idea of a specific board or thread, although I do think there is a good chance it wouldn't work practically. I'm objecting to the idea that siblings should have to confine their experience to a specific place.

For the siblings that do want to discuss the negatives as well as the positives, as already explained up thread they've undoubtedly spent a lifetime feeling guilty about even having those opinions, and not feeling they can raise them without making their own parents feel bad. So having to shelf their needs for the sake of others. So to then say they shouldn't be raising them on open boards on an anonymous forum because it makes other parents feel bad, and for posters to try and guilt trip them out of expressing their view seems like a double kick to me.

Fwiw, I wouldn't change a thing about having a sister with a disability. She's brought nothing but positive things to my life, in spite of negatives or challenges along the way. I wouldn't be who I am without her. I've had many more issues with my NT sister than the disabled one!

A while ago there was a post in Chat about siblings of disabled children. Sadly the majority of people were disappointed with the way their parents handled the situation with most focus being on their sibling. There were also the posts from people who didn't feel this way and what their parents have done to treat them fairly. OP, excluding your DC from family event because she's disabled is shit and shouldn't happen. She still IS part of the family, sorry that the others can't/don't want to accommodate her :(

This is nonsense, I'm sorry. Some of us posted about our experiences of the difficulties of being the sibling in this scenario because there were posts which were, IMO, painting the sibling's position in these cases as though OF COURSE the siblings would ALWAYS feel x, y and z, when that isn't the case for many people.

And conversely Annie, and this is my own interpretation (as yours is yours) I also felt the posts were describing 'inevitabilities' (as you describe x/y/z) about having a disabled sibling, but in the negative and THIS too is not the case for many many people. I too learned a lot about the experiences of others, but as per my previous post, I have found them very sad to hear.

Which is as it should be for parents as well as siblings zzzz

Collateral damage? That is exactly what I meant by guilting people into being silent.

And what is sad is that it's counterproductive, because lots of insightful experiences and opinions won't be shared if they think they will be shot down.