Family holiday - been given a list of things we can/cannot do due to nephew’s ADHD/autism

[APATEKPHILLIPEWATCH]

Going away on a holiday abroad at Easter with my 3 siblings, their families and our parents.

We’ve been on holiday with them before and not going is out of the question as our parents are elderly and our kids are all getting older too so we want to take the opportunity to all enjoy the time when we can.

Separate accommodation. My nephew is 11 and has recently, after getting nowhere diagnosis-wise with the NHS and 2 private clinics, been diagnosed by a 3rd private clinic with autism and ADHD. This is after a long history of behavioural issues and other symptoms.

My sister in the holiday group chat has given a list of “rules” for us all, including our kids, about what we can and can’t do around nephew now that he has a diagnosis. She’s asked we all respect it so that it can avoid a meltdown. They include- no competitive games (my own kids are a similar age to him as are my other nieces and nephew). The kids like to do things like throw those little sinking toys into the pool and be the first to dive for it. No talking about certain topics such as school (he’s a school refuser) to him and have asked to share our own kid’s school stories about school away from his ears as it upsets him when he hears how other kids are getting on And no talking to him when he has “quiet time” - so for example he will ask for an hour by the pool to be left alone and we all have to respect it and brief the kids as well. This might be a struggle for the cousins as some are younger and will want him to play and won’t understand to leave him alone. When we go out for meals together we can’t eat outside as nephew prefers to eat inside.

I don’t really know how to feel about this. I myself have a disabled DS but with a physical disability and we’ve always tried to ensure his symptoms and needs don’t impact on others - we just ask people to be forgiving if we have to cancel things, but there’s certain things my DS sometimes can’t do or join in with and I’d never stop the other kids from enjoying what DS can’t enjoy.

Not an AIBU as such but how would you respond? I want my sister and her family to have a good time but I’ll be damned if I’m told I can’t eat Al fresco with my mum and dad (who love Al fresco eating too) whose last holiday it will probably be!

It's obvious something is going on with him but I can't believe 3 sets of experts are wrong.
This is along the lines off so many people diagnosed asd when really it's the likes of bpd. So they don't get the help they need at all.
It doesn't help anyone longterm .

She not expecting the children to be quiet..she asking they don't go over and bug the child at this time

The first 3 assessments didn't state that nephew wasn't autistic. They would have said unable to diagnose at this time come back if things don't improve

To illustrate their journey and why now all of a sudden there is demands being made. Demands were kind of made before but I get the feeling a diagnosis has given her a credibility to make demands.

I actually do know what it's like to fight for a child with other disabilities and still fighting as a grandparent but I didn't mention your disabled child at all 🤷‍♀️
You asked about your sisters demands and I was trying to give a perspective of how stressful it is.
However I have read more of the thread and it would seem there's a lot more to it. The problem with many support groups is that an illness or disability can become someone's identity, especially if it's the first time you've been heard. It sounds like she spends too much time on them. This can actually become toxic and parents stop pushing their children's boundaries.

I recognise the type of parent you're talking about and can see how frustrating and stressful it must be for you as well. I'm sorry my reply came across as judgmental, I guess it hit a raw nerve.

As for the holiday, well you can't cancel so I'd just spend good chunks of the day with your own family so you get a breather and enjoy it the best as you can. It won't do your nephew any good being taught he's the centre of the world but I'm not sure what you can do about it. If my grandson for instance needs quiet time we would move to a Quiet space and not expect others to vacate a space or tiptoe around him. We would encourage many different types of games so he could choose which he would like to join in. As for not eating outside, well that would be for me to deal with but it would maybe be nice for people to take it in turns to sit in with us so we didn't feel isolated.

I have asked @Ma1lle if it would be a “yawn fest” for nephew to “bang on” (her words) about his achievements - one of which is going to school at the moment. I haven’t had an answer which is a shame

I’m aware of what a meltdown involves. I’ve seen plenty. Are you annoyed that it doesn’t ruin my day? I don’t really get your point? Because it ruins my nephew’s day it should ruin mine? I’m simply saying that during meltdowns I don’t make a fuss or get involved. A couple of years ago my dad was trying to give nephew a lolly mid meltdown and I had to say FFS dad leave him alone it doesn’t help. You learn v quickly what does and doesn’t work when a child has a meltdown and the rest of us just get on with our day and leave to DSis and BIL to manage and move out the way if need be

Hard agree with this, it seems to go hand in hand with a lack of understanding of what reasonable adjustments are.
I need a quiet space to work that's set up in my particular way, preferably at the same desk each day in an office where most people hot desk. As such I require adjustments.
Now I could demand that everyone works in absolute silence and sets all desks up the way I want just incase I need to use them but that would be unreasonable.
What I did ask for and get is the desk in the corner that nobody else likes to use (its out of the way behind a support column) allocated as mine set up how i need it to be and permission to use earplugs and ear defenders. I got these adjustments because they are reasonable and don't really impact on anyone else's other than having to send an email or actively move to me to get my attention.
People have forgotten that reasonable adjustments can't negatively affect the majority of others

How is this relevant to what I posted ?
I'm not saying adjustments should not be made . No matter what the diagnosis.

Someone with anxiety may also want a corner desk that noone else moves stuff or sits at .
My point was not what diagnosis people have my point was I doubt 3 experts are incorrect and sometimes longterm it's better to get the correct diagnosis and not just the one you want

The quiet time is reasonable. You can tell your kids to leave your nephew alone when he’s got his headphones in. Kids should be told if they bother him.
Everything else is unreasonable. Absolute arse holes on here saying how your kids shouldn’t brag about school all day. It’s completely NORMAL for kids to talk about school or their school friends without any amount of bragging and OPs sister doesn’t even want to allow that. OP can’t and shouldn’t police that. Kids will be kids.
If she’s saying they’ll be eating indoors fair enough, you can eat separately and even join them at times, but it’s unreasonable to dictate where the whole group eat on holiday.
You also can’t police what games your kids play.

Keep the response simple “yes I’ll be chatting to the kids about making sure DN is left in peace when he needs down time. I’ll be watching to make sure they give him space. Fair enough if he doesn’t want to get involved in any competition style games, I’ll make sure the kids understand.
Totally understand if you always need to eat indoors, it’s fair enough, and we’ll all have some lovely meals together. We will be eating out as well but we’ll coordinate all being together for some meals”

Also who the feck argues that reasonable adjustments in the workplace should carry over into how other children behave!

Given my son has spent spells in hospital I do know what it’s like when a child can’t go to school. In those moments I never expected people to never talk about school or for others to never mention hospital even though DS’s worst memories are being in hospital

If dnephew will be having quiet time daily, and will be eating indoors separately from you - would these not be the times when your dc could tell the family all about their wonderful school achievements?

What was your relationship like with dsis before you had kids?

From your posts it really comes across like this is part of a much bigger set of issues between the two of you.

But you can minimise distress by taking action yourself not expect everyone else to take the action for you. I say this as someone who is myself ND and has to make my own adaptations. It's maybe a tough lesson for kids and adults alike but you cannot actually control other people you can only control yourself (and yes, you may have impulsively and executive functioning issues but I mean you can do whatever you can do yourself to make things better). Where children haven't yet developed the skills and coping mechanisms yet to do this effectively, it is the role of a parent to help and guide them through this. Don't get me wrong, I'm not saying those around you shouldn't also be mindful of your needs and sensitive to them - they should. I wouldn't expect my child's cousins to come up and scream and shout near her when she is struggling and for her to constantly have to move away. We can teach respect for needs. But there is a balance on both sides.

You said I have “no idea what it’s like to fight for a ND child” - I do know what it’s like to fight for a child’s medical needs so I felt you seemed to be implying one for ND children is harder. But maybe the comment hit a nerve with me too! such is life!

Definitely gonna do meals just me DH and my kids, we are like a zoo when we go out all 16 of us

I actually don't think the requests are too bad?

I have an ASD/ADHD son and I know exactly what it is like. It sounds like the parent is giving a heads up on what to watch out for, to make the holiday more enjoyable for everyone. Believe me, ASD child in meltdown is not fun for anyone to be around.

Quiet time? Absolutely reasonable request. Simply explain to your kids about his quiet time and why he needs this. Quiet time is crucial for regulation. Maybe use this opportunity to take the kids out to the beach/park/shops etc or do another activity?

Not talking about school? Yes, reasonable, if the subject causes distress to an ASD child. Nobody wants to talk about school on holiday anyway.

Competitive games. Yes, ASD children can have RSD which makes losing very difficult. I am sure there are plenty to opportunities to "play' without turning it into a competition. If your kids want to do a competitive game, make sure the other child knows in advance, so they can decide if they want to participate or not. It can even be done during his "quiet time".

You aren't all joined at the hip. If it becomes too much, go off and do your own thing for the day.

We’ve always been close. But like most sister had our moments of butting heads

My point is that I don’t think it’s reasonable or fair to expect 7 children to remember when they can and can’t say things when conversations just naturally flow.

But why should 7 other children, one of whom is 4, prioritise not distressing 1 child over their wants, and over the natural flow of conversation? Why should their holiday consist of having to watch what they say about perfectly normal and acceptable subjects? Why should I have to always be listening out to see if they’re gonna play tig? Do you not think it’s easier to tell an AuDHD child that these thugs may crop up and if they do give them tactics to manage it rather than avoid everything they may not like?

I agree, but maybe this IS the balance. This could be the tip of the iceberg and only the things causing her the most worry.

I would be surprised if she wasn't also taking action herself to minimise her son's distress. This might be ensuring his favourite foods will be available, creating picture stories for where they are going and what they will be doing, planning activities for him when they are there, working out and agreeing three different quiet time "spots", researching local restaurants, making sure they have his comfort toys / equipment to help keep him feeling safe and calm, planning how to manage the journey etc etc.

I’m sure they will be doing that as well but the point of my post is “where does the expectations on others end?”. To me it ends in agents to stifle perfectly acceptable conversation or restrict play. Ive already conceded that quiet time is fair enough as long as everyone has it and its obvious its their quiet time?

@Ma1lle im really interested to hear your views on if it’s bragging if ND children speak about how they achieved things that are typical of NT children?

I think you should just do you and your kids and parents and if sister and son want to join in let them on their terms re games, convos etc. As for eating Al fresco again, nothing stopping you and your family and parents enjoying that. Your sister and your nephew can stay inside. If it bothers them enough they know where you are and can join you.
They're a fine line between accommodating and pandering and you don't want your family holiday to be ruined by her rules and your kids will only end up resenting their cousin if you have to constantly keep him happy and meet his needs above everyone else's.

I would probably go and be sympathetic and try and accommodate him, but if it starts getting too controlling to the point it's spoiling everyone's holiday, I'd try and find a balance so that everyone's enjoyment of the holiday is respected.

The only one I'd respect is the quiet time. We're all entitled to some peace and quiet. If he goes away from the group for some peace no one should be harassing him. Just like if you went to sit somewhere to read a book you'd expect SIL to not let her kids come and bother you wouldn't you?

Otherwise, people can talk about what they want, play what they want and sometimes sit inside, and sometimes sit outside. He can join what games and conversations he wants. And everybody's seating preferences are equally important.

I'd politely decline to go, health needs require accommodation but these demands are unfair on you and your family. Book a separate holiday with your elderly parents. They get an extra holiday, you actually enjoy your time together and nephew gets the space he needs.