AIBU 5 year old SEN child - Xmas Dinner?

[BreatheSEN]

Name changed for this as would be quite outing

Since last year, DM has been arranging a family Christmas get together with all the grandchildren. Last year, she took the children to a pantomime before going for an evening meal. I should stipulate all parents and partners also attended these events.

DD is 5, ASD + chromosomal disorder. Non speaking, still in nappies.You get the picture.

Because of this, we couldn't attend the panto and will not be going again this year but we were hoping to join in for the sit down meal which DD can just about cope with and has been getting better at. It worked for us well last year, with the dinner being later on in the day.

But this year, the meal has been planned for mid morning and this would be enough to prevent us from going as she is frequently up and down during the nights and she would be absolutely shattered if not being challenging for the time the meal has been booked for. When DM originally started planning this meal back in September, I did mention that 11am would be a struggle for us but if it was moved to after the pantomime, we'd be more than happy to attend.

To cut a long story short, the meal has been booked for that time. Its extra problematic for us this year as she has just received a specialist school placement and is due to start that very week, which means her routine including sleep, is likely to be completely out of whack.

I've asked why the time cannot be changed and its because the family don't want to disrupt the 1 year old cousin's bedtime routine. I hold no ill will against DB and SIL and child, but I feel that it is unfair for my DD to not be able to attend any of it all this year for the sake of a baby who, respectfully, isn't going to remember any of it.

To add further, DD has been out of school for some time prior to starting this new school and so would really benefit from spending time around her cousins

AIBU to think that moving the time back to after the show would be far less disruptive to the 1 year old than my DD?

Absolutely this.

Baby won’t remember. Will probably be asleep

if I was the SIL I’d of agreed to change the meal times because of wanting to see my niece and OP.

this seems very excluding and cruel to your little Dd.

your a bigger person than me but changing a meal time is hardly bending backwards is it?

I bet all the posters telling the OP that she is being unreasonable would feel differently if it was their non disabled children being deliberately left out.

But hey it’s a disabled child so of course the OP is being unreasonable expecting people, especially the child’s own family, to accommodate their disabled grandchild/niece/cousin.

Let’s not pretend that a 1 year old is going to enjoy the panto. In fact there’s a better than average chance that the 1 year old could scream their way through it and have to be taken out.
Every child is unique, and sometimes that child’s uniqueness and difficulties mean that others need to think about how to accommodate them. How else do we build a society who is tolerant of the disabled and incorporates them into every day life.

For all those smugly telling the OP she’s unreasonable, just remember, you, and your children, are just a car crash away from having a disability. So you might want to think on that when you’re being so dismissive of a disabled child. There but for the grace of God go any of us.

This is so right!!

I feel really sad that you've had to bow out. I just can't imagine not having my niece involved in some part of the day.
I've got a fair few nieces and nephews and if adaptations needed to be put in place then they would. Especially when you've got one child who will remember it and one who won't.
Hope she gets on well starting at her new school

OP I don’t think you’re being unreasonable at all. Your daughters needs sound really significant and have likely meant that she and your family, have already missed out on a huge number of events and will continue to do so her whole life. The 1yo’s family might miss out and mess up bedtime routines, which will suck for them, but is WAY less challenging than what you likely deal with every single day. I say this as a parent of a neurotypical child, in awe of anyone who parents a child with complex needs. If you were my family, I would bend over backwards to make sure you could be included even if it inconvenienced me.

I second this. There are quite frankly, a lot of horrible trolll posts about disabled children on AIBU and some of the comments on this thread are very kindly trying to be helpful, but don't show much understanding of how difficult it is raising a SEN child. There are many places I don't take my child as he wouldn't cope with it. I don't even know if we could ever get on a plane and go abroad or sit on a coach and go somewhere it's that bad. Family meals in a safe environment are usually one of our few options for socialising, so I would like to attend them if I can.

I do just think it's a new baby and they are trying to be accommodating though, it doesn't sound like they are intentionally excluding, but you obviously know them better than me! I would let it go for this year.

Absolutely this. I find it so sad that OP is already being so gracious about this, her family really don't seem bothered about including her daughter, and even more sad that presumably OP's daughter will grow up hearing about all these things that her family make zero effort to include her in, and what that means she can expect from society at large...if your own Gran is more bothered about 'including' a 1 year old who likely won't know what's going on anyway and won't remember it, would you think anyone less close to you is going to be remotely accommodating of your disability? The whole thing is just awful. The way OP has handled it is already laudable IMO. I'd be kicking right off at my own mother discriminating against my child.

this thread makes me sad. this is a child with a disability who is already missing out on the shared experience of panto - and will miss out on many other experiences in their childhood.

People are coming on here and 'explaining' to the OP why her disabled child 'should'could' be able to do certain things - it is grotesque!!

just never tell an SEN parent that they 'could' make something happen or should just accept how things are - when they are manifestly unfair to their child

Op - you have my every sympathy and if I was you I would write a calm, polite email explaining how you feel to your family members - at least they might then understand a little more about being the parent of a disabled child..

And maybe she won’t be able to…
do you have any idea how painful this is for a parent of a sen child? every day is a battle and full of fear for the future and why can’t my child be ok.

Me too :( clearly some very lucky parents on here

Why don’t you just try it? Go to the meal on the understanding that if her behaviour becomes too challenging you’ll have to leave partway through. Then you can at least say you tried and it will give you something to fall back on next year if you have the same issue. You never know she might surprise you and cope well with it.

I'm not surprised you are hurt, doesn't sound like they'd be eating before 4 anyway with the panto timings. It wouldn't hurt any of them to feed their dc at home before the panto and then go for food after if it means your dd can be included in the day

I will add that my child sleeps at school. He is mainstream as there are no special school places but he has complex needs. He regularly wakes for hours each night, so can be tired at school and luckily they understand and let him sleep. I suppose the daughter could sleep at the meal, but what would the point in that be? School is everyday, this is a one off occasion.

As a parent of an SEN child, you have my every sympathy, op. We often face these type of issues at Christmas

As the grandparents have no form for trying to leave your dd out or be awkward i assume the baby's parents must have spoken first. Perhaps they were chatting and baby's mum or dad said "eating after panto will be a nightmare for us" and gran said "let's eat before" It is then a bit rude/awkward to go back and say actually we need to do after panto for other grandchild.

Maybe the restaurant is booked out afterwards it is a very busy time if yr 11am likely to be much easier to get a table.

Maybe the panto ticket are already bought so they want to make sure one year old and parents can attend rather than loose that money.

It is unfortunate but shouldn't be an issue next year as baby drops naps and now this has happened hopefully your parents will check in with you first.

I understand the disappointment but would give benefit of the doubt that there is a reasonable explanation.

Ultimately, they need to understand that in order to involve my daughter and include her, plans may need to be tweaked from time to time.

I just want her to acknowledge DD is different and that being able to take part in what she can take part in, might require some inconvenience on their part from time to time.

Is this a conversation you could have with your mother?
She may want to do the pantomime and meal this way this time round but could you jointly plan other family events with her so your daughter gets to socialize with her cousins and you are not isolated and excluded from family events? If this is a case of not understanding how to accomodate your daughter rather than not wanting her there then you might find a way forward.

Why not just meet before the meal for half an hour.

Or at 3:30 there’s still plenty of time left to go to the park for half an hour to play.

@BreatheSEN
As a close relative to a family member with a SN. non verbal child, I understand some of what you must be feeling, but with that comes the awareness that accommodations and arrangements must be made not only with your child in mind but other children as well.

Wouldn't it be simpler for you to host a holiday early afternoon luncheon in your home to which all of the cousins are invited ? Hosting this would give you control over the time, and will allow your child to have the desired cousin and peer interaction.

Sometimes, you have to determine whether it is control over the event or the opportunity to produce the desired outcome that is the goal.

I live in a 2 bedroom bungalow owned by my father. Its very small. I'm grateful that we pay below market rent to him.

I've made accommodations to the neurotypical children - by not going out of pocket when one particular cousin keeps referring to her as a dog. Thats me being accommodating.

It's a shame you have to bow out, but you know your child best and are putting her first. I tried too many times to fit into other people's plans against my better judgement and my DS just had a bad time, which wasn't fair on him.

I am sorry your family are not able to be more flexible and don't understand why this is necessary to be inclusive.

I hope you can find something really lovely to do with DD that day that you will both enjoy.

I find it sad that the family are looking to start a new family tradition that excludes one member of the family. YANBU @BreatheSEN

@BreatheSEN I'd like to be surprised but in all honesty, it's the reality of life with children who have SEN. It took me a long time to be able to say 'that doesn't work for DD1' rather than trying to contort her and us into impossible situations to try and fit in.

OP that is utterly dreadful and NOT something you should feel you have to 'accommodate'. No doubt the cousins are picking up on the ableism older members of your family seem to find acceptable. Do the cousin's parents ever tell them off when they say that, or does anyone else say anything?

It's really concerning that some people on here seem to think 'accommodating' a child's preferences is the same as accommodating a disabled child's needs. The disabled child's needs should always come first IMO. If someone thinks that's 'unfair' then perhaps they should consider that it's much more unfair that some children are disabled and then routinely excluded from things even by their own family.

I've made accommodations to the neurotypical children - by not going out of pocket when one particular cousin keeps referring to her as a dog. Thats me being accommodating.

that puts one hell of a different slant on the entire scenario

Namely why on earth you would want to spend time with family that permit their child to say this truly heinous thing. And it is one of those things where no matter how old the child in question is - it is unacceptable