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!

OP and her DH weren't actually invited, were they? Just DD1?

Im trying very hard to not elaborate on my sons life within the family because I feel that its the same as saying yes Tucking has a point but we're not like that - the truth is that at times we are.

The reality is that having a sibling with special needs is a mixed bag of tricks and there isn't a person in the world who's selfless enough to not occasionally get fed up. And I would go as far as saying the more severe the disability the more likely it is.

After his daily evening walk my son trashed the local corner shop. We have an idea as to what caused the meltdown but the reality is that a neighbour had to come and get me, the shop is trashed, 2 of his carers are sitting with ice packs on their head, and tonight 4 of us will sleep with one eye and one ear open. My children were all told because I needed their help to contact the owner of the shop. Its why they all live within minutes of me and my son in our custom built house that was built to cater for his needs. They want to be close to hand. As it is one of my daughters came to help and whilst her first reaction to it all was - oh my god mama, is he ok, what caused it, how is he, how is everyone else? Im also very sure that when she had to rush out of the house after the initial call she probably sat in the car and said 'oh for fuck sake'. And she was entitled to that given she'd had to leave her children at the table doing their homework. I also said something similar when I looked outside and realised it was getting dark and my son should have been home about 10 minutes earlier. It was while I was reaching for my phone to ask his carers where they were, he's 2-1 round the clock, that my door bell rang and I just knew, I just knew something had happened, so my stomach sank, my nerves went into overdrive and i said out loud in sheer terror - oh for fucks sake. Anything else was beyond me even though at that time all I could think of was getting to my son and helping him.

I dont even know where I'm going with this but Im hoping people get the gist of it.

SIL handled it badly, but I'm 90% with Lucie. I tried to read all of OP's posts & haven't changed my mind. It wasn't a family party. Inviting one 5yo does not normally mean also inviting rest of family.

Oh and then there was one of my other children who minutes beforehand had posted pictures in our family whatsap group of a lovely dinner she'd made. Ive still to say to her it looked delicious and ask her about it yet we last spoke just after her brother went to bed and she called to ask if he'd settled. Ive no idea how she may feel about the fact her lovely dinner that she took great pleasure in as a newly wed went un-noticed but if she is a bit disappointed about it then so be it because she's allowed to be.

It was just when you said "OP doesn't have to go" I thought you were thinking OP had been invited, and there would be no possible way of explaining that away!

gindingaling I can only imagine how stressful and challenging any Spectrum-disorder must be, and I can completely understand how that must lead to feelings of frustration and even annoyance from a sibling point of view. But specifically using your example, if a sibling doesn't suffer episodic behaviour (as an example) there's nothing 'selfless' in not getting fed up when there's nothing to get fed up of. I hope you understand what I'm saying there as not sure I've articulated that exactly as it is in my head!

Fax I fully agree. If My DSis had a different disability I cannot say I would feel as I do. If I was on the receiving end of violence etc then I would fully expect to have a differently point of view. I have been truly lucky and blessed to have the DSis I do and I appreciate not everyone is as lucky as me xx

Its late where I am and Im off to bed but I just wanted to say that in my opinion this has been one of the best discussions we've ever had here on the subject of SN.

A huge thanks to Tucking for her contributions. You opened Pandoras Box and that couldn't have been easy.

Also a huge thanks to Annie for saying what I wanted to say but couldn't. In the last week or two Ive started some BP medication and Im struggling a bit with my though process.

Good night.

You are your daughter's advocate so yeah, they should have made her feel she is included in the family. I had cousins who treated me like crap or unimportant (I had to sleep on the floor and my sister sleep next to our cousins so they can talk all night- I am deaf (who used hearing aid/ now cochlear implant).

Gindingaling you sound like you had a right night of it, the corner shop night.

(And thanks for the kind words to me, too.)

Personally, I Wouldn't invite one cousin if I can't invite another. Shouldn't family help other family feel they are included no matter what?

This has been a very interesting discussion to follow, and very moving to hear from posters who have disabled siblings. It's good that you've felt able to speak up on here.

But on the other hand, I didn't feel that the OP was wrong to feel hurt by her SIL excluding her DD2. It was a family party and it wasn't as if DD1 was particularly close to her cousin, so it wasn't like an invitation to a school friend's party, where the friend didn't know DD2. The way it was done just felt like it was mean.

The OP got defensive in the end, which is why her posts got hostile. Some of the other posters were being quite harsh with her, and she was clearly in a delicate place.

Well looks as if my eldest son is coming home for a few weeks, which means my younger two have to move out at short notice. Honestly? It sucks and it is hugely disruptive. Middle son is fairly stoic about it - just wants to take his computer. Youngest is worried about getting to school etc, so will sort that.

But they know & have learned we will pull out all stops for any of them if they need help. As mentioned above it's about responding to needs. When they need something they get it as well. If they ever end up homeless they will always have a home here. However much disruption they bring with them. Hopefully they have learned that.

I am a bit of a hypocrite with this, whilst if DS2 is excluded I would feel really hurt and angry, we as a family also exclude him. Friday is a Respite night and we have cinema and meal planned with out older children. Technically he could come but it is lovely to eat a meal in relative quiet and to eat at normal pace. We arrange respite for my other DCs birthday meals so that they get the attention and can experience a somewhat briefly normal night. I do what the SIL has done to my own child. This is mainly as he has got older, stronger, louder and more unpredictable.

I think that is usual as our kids get older bouls (which is why I mentioned several times when OP was getting a hard time that her children are tiny & it is usual to spend lots of time together then).

I think this is awful! It's a kiddy party - all the children will enjoy each other's company without judgement. No way should your other daughter be excluded. What's that's teaching the children?!
I'm with your DH and understand his anger. It's a family party and both your daughters should be there surely?

I think at this point, you should trust your husband on this. He expected better from his sister and upsets that she would treat his children as a burden

Not unreasonable at all. I'm 27 and have been abandoned by my mums side of the family since her death because i have MH issues. They've never been supportive even when my mum was alive, but as soon as she died it was like i didn't exist. I'd wait up to a week to a reply to a text, and if i didn't text them first every time to start a conversation, i wouldnt her from them. I once waited to see how long it would actually go, and it was almost 8 months before i got a first text.
It makes you feel unwanted, unloved, and absolutely shit. I'm glad your daughter is too young to understand/feel left out, and that you're standing up for her.

boulshired there is nothing remotely hypocritical in using respite so please don't ever feel you are excluding your DS2. Respite care is of as much benefit to both the family and service user and is such an important part of family life, you must never ever feel this is somehow neglectful or unkind on your DS2 . At the very very least, respite offers an opportunity to experience life away from home for the service user (which you never know may ultimately be required permanently) and for the most part is essentially a fun sleepover! DSis only gets one weekend every 2 months but it is a hugely important part of her life, and ours xx

Sometimes inclusion isn't in the best interests of a disabled person. I have a (now adult )child with autism and my feelings are mixed. My other children's childhood experiences were very much compromised in trying for inclusion when actually, on reflection,that was about my need, not my child's. However, I largely followed the inclusion script and I have to say I question it everyday.

A lot of the social occasions I did attend proved stressful for my disabled child, for my other children and for my husband and I. Nobody gained anything from it and it impacted on other people too.

I do think that siblings of disabled children invariably get less time from their parents, their experience is unlike their peers and they often feel isolated as a consequence. They need one-to-one time because they are equally as important yet can feel anything but.

It is important to consider the level of disability and if others might find some behaviours distressing/alarming. Careful consideration of the needs of all need to be weighed up before a decision is arrived at.

I think this is a very balanced post. I have a few friends who have disabled siblings and it's impact on them has been significant.

It's primarily the feeling of responsibility toward their siblings and specifically the impact during childhood.

This might not be relevant to actual OP, but discussion around siblings has hit a nerve so thought I would share something. I have an older brother with severe special needs. However whilst my needs are not as significant as his, it's worth noting that I also have been diagnosed as having Asperger's and had very significant mental health issues throughout my teens, to the extent I have been a psychiatric inpatient.

I'd also like to point out my experience is deeply coloured by my brother's behaviour towards me in my teens (I heard graphic descriptions of how I would be killed on a daily basis for a few years, I was verbally abused, on several occasions there was physical violence towards me) which has deeply impacted how safe I feel around him.

I think parents - well my parents - often feel a lot of guilt at what a sibling is put through, but rather than constructive ways forward being produced, my experience was my parents would seek my reassurance that I was ok with what was happening, that my brother's issues weren't impacting me. Which produces a weird dynamic in which not only do you not feel permitted to be hurt by things that are hurtful, but you feel responsible for managing your parents feelings about what is happening (I don't really want to go into specifics, but my mum had some very dark conversations with me when I was only 11 or 12 which still haunt me). What I remember feeling the worst about was the precarity of everything, it always felt like walking on eggshells (and still does when I'm with my family), unsure of when the next outburst would be.

I remember in particularly bad times wishing I could become more ill again just to be back in psychiatric hospital, away from it all.

Going to university was an absolute game-changer for me, it finally gave me a space where I felt secure and as having control over my own environment, and it gave me the calm I needed where I could work on my own mental health, and where for once when I was interacting with people, the person they were concerned about was first and foremost me.

I often feel very alienated when discussion around impact on siblings has the implicit assumption that they don't have special needs or issues of their own, or that there aren't instances where their needs should take priority - I remember e.g. my mum on the phone to my brother whilst she was visiting me in psychiatric hospital.

I often felt that my mental health issues ended up mattering much less because they were not as severe, or them not being managed didn't result in violent outbursts (what I did was hurt myself). I am quite emotionally distant from my brother now, and, on one level, I feel guilty, but on the other I just don't have a sense of security that IO feel at ease in his presence.

None of these issues are relevant to OP's discussion, in which it doesn't seem, from information we've been given, that they are being unreasonable in this case, there are no issues of physical endangerment, DD1 and DD2 are similar ages, and the party according to OP is something DD2 can enjoy.

I don't think the issue of one sibling missing out because of the other siblings health issues is relevant here.

This isn't a parent insisting that both children are invited to everything. It's not a school party or friends party.

It's kind of not even really about the child that is invited. It's about family cutting out a disabled child again.

One of my twin DD's has quite significant health issues. They do different activities, have different friends, and have their own lives. If one of them was invited to a cousin's party simply because she is a cousin then damn right I'd expect her sister to be invited.

If you invited cousins of a similar age to a party then you don't get to ignore one because, once again, it suits you.

I think the op is totally right to put a stop to the family thinking it is acceptable to ignore a child because she has disabilities.

In my family, I am the disabled child who tends to get ignored, or treated very differently. Thankfully, now I just don't care and I do what makes me happy. But it really did bother me when I was younger. I am aware of what they were doing, and that's why it Hurt so much. So no, you're not being unreasonable at all.