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!

Did I say he did it all week?

You seem to think he can’t mention it once.

When my ASD child needs alone time he takes himself inside for headphones and tablet time, or to a different room. Expecting not to be disturbed while sitting by the pool with 10+ other people, including various kids is insanity. Your sister needs to manage expectations. It’s really quite simple.

Child has a right to alone time and not be disturbed. Child does not have a right to choose where this happens and dictate everyone else in that location.

Child has a preference to eat inside. Okay, they pick a day to eat inside as it is their preference but are told there will also be times eating outside has to happen and adequately prepare them. “Today is the day we eat outside. Do you want to take your headphones, wear a hat, have a special toy with you?” “Remember we are eating outside today, so we will be on best behaviour and tomorrow we will eat inside because that’s what you would like. Isn’t it kind of everyone to agree to this to make you most comfortable?”

Minimising talk of school is fine. Try not to go on and on about it, however she needs to manage her son’s expectation here too. Children will talk about school, it is a huge part of their lives. You say he is a school refuser, not that he has been excluded.

See also, competitive play. If she doesn’t want her child involved in it, she can exclude her own child from it. If the children are playing games they enjoy that she knows will upset her son, it is her place to take her son away and distract him with a different activity. Not ask all the children to sit on their hands.

She is going to make the children very resentful of their cousin if she isn’t careful.

The thing with ND is a bit of exposure to the uncomfortable thing is paramount. I’ve seen too many little boys turn into rude entitled adults because every difficult thing is pandered to and they are excused from anything they dislike. They absolutely need to learn the balance of having allowances their way and giving a little back. I am ASD myself and we absolutely have to learn to manage our own expectations and difficulties, not control and limit others. It’s not easy, but it’s part of life.

TBH it all seemed very wishy washy: “He’s depressed and has low self esteem. Get him into a hobby! Use positive words! Get him into a good routine!”. In other word totally futile recommendations that, in trying to implement, made things worse not better.

In my opinion as her sister - I do think they went shopping for a diagnosis. But I don’t judge them for it.

Why did you mention it then? Why not just say ‘Nephew is diagnosed adhd and autistic’, which would be adequate information for your post about holiday advice. Intentionally putting in unnecessary details about his diagnosis was 100% to appeal to certain types of posters on here, and invite conversation about whether your nephew has genuine needs and disabilities.

Going to multiple different Dr's until you get the diagnosis that you want (in this case 4 different sets) is the definition of diagnosis shopping.
The boy in question didn't meet the threshold for a diagnosis not once or twice but 3 times, were all of those experts wrong, was the diagnosis of MH issues wrong but the one dr that his mum found to agree with her is correct?
The fact that this mum is so focused on an asd diagnosis and from the OPs posts seems to be involved heavily with the self-id asd groups is concerning aa it will most likely mean this poor boy won't get the MH support he needs nor will the support he may be offered be right for his needs.

But not from the private lives of individuals - my son also requires reasonable adjustments from school but I have never once expected every person he passes in the street to treat him the same as a professional would. That includes family members - if I said “Oh we can go to that theme park but you can’t go on X Y Z rides because DS cant” would that be reasonable because I want everyone to be treated the same?

Ah, I see. You think autistic meltdowns last for a few minutes and then everyone moves on.

In the real world, they're an exhausting and terrifying experience. The individual in question will usually be wrecked for the rest of the day, and then tired for a day or two afterwards...meaning the chance of another occurrence is drastically increased.

From professionals settings yes but no one is entitled to reasonable adjustments from a private individual and no child should be taught otherwise

For someone who supposedly supports children with disabilities, you sound incredibly cruel about OP's son who has a physical disability.

I would be ashamed to have written a post like that about a child. Challenging OP about her nephew's need for reasonable adjustments certainly does not make this sort of comment acceptable in any way.

No competitive games
quiet time by the pool
eating indoors only
No talking about school [/work]

sounds like my kind of holiday!!

seriously though, your dn’s diagnosis is life changing and very new for them as a family, surely you want to support your dsis. You talk a lot about wanting to enjoy the time together so I imagine family is important to you. Why not try to accommodate dn’s needs. It’s good for the kids in general to understand that other people are different and may need adjustments. My kids really don’t spend a lot of time talking about school, surely you just move the conversation on if you notice that’s what’s happening. (In fact, it’s usually adults who say How’s school, Freddie? - and all the adults can remember not to do this. It’s just called not being insensitive.

most kids struggle with behaviour around competitive games, if you all support the kids in thinking of fun collaborative games they will probably all be much nicer with each other which is a result anyway.

as for meals, split them so some are indoors and some are Al fresco, DN and parents can always take a separate meal if the rest of you are outdoors, but it will help them if you’re all prepared for this and not nagging them to join you “oh, but it’s so lovely in the sun! Bring your breakfast out here!”

honestly I think it’s good that your dsis is thinking ahead and aiming to make the whole experience as smooth and stress free for everyone.

Everyone's needs are important.
The way you write has come across that you don't believe his diagnosis (you say you do but some of the comments and tone suggest that you don't).

You understand that quite time relaxing with headphones should be respected for your DD but because it wasn't last time you don't think this should be allowed for nephew. But it would make sense that it was an accepted adjustment to all. And followed as mush as possible by all.

I think there has been some confusion ND tends to be an invisible disability where as physical disability tend to be more visible and therefore in general terms people tend to have more understanding on the surface.

In your sons case he has the visible side but also is disabled further by the invisible symptoms. Pain for example is hard to quantify and no one can generally see the level of pain the person is in. That's why this has to be led by an individual
The level of pain will vary between people with the same condition and even in an individual depending of many factors.

Someone for example may be able to walk one day but not a different day due to the pain caused by the condition.

An individual and/or care giver has to be able to advocate.
When parents are judged or not believed it is awful. If your child is suffering due to others impact on his disability then they should be made aware and where possible adjustments made.

In relation to school. Organic conversation led from children are one thing but too often these conversations are instigated by parents / adults as one up manship and a back handed dig at the others. Or used to apply pressure to the child to get them to attend.
I don't know what is happening in your family but it is worth reflecting as a family and to see if small adjustments could be more inclusive to nephew. And also the family can consider and reflect on your child's needs and the needs of the whole family group.

They most certainly are.

If I was the sister I would be avoiding these kinds of family holidays full stop.

Yes I have I’ve already said I’ll make a suggestion about headphones = leave people alone. But this thread is about what is reasonable and what is not - should I just go along with everything even if it’s unreasonable?

You seem focussed on my son talking about his achievements - but that’s not what’s been asked, what’s been asked is that it’s never mentioned. But kids DO mention it in passing “my friend Jacob from school” “I learnt that at school” “My teacher told me this joke” etc.

Can my nephew brag about going into school as a school refuser or not? And if he can, why is it different from him to brag?

As is always the case on here, we are only hearing the OP's version of events. She agrees he's ND and has witnessed his meltdowns in the past.

If the sister was on here and able to give her version responses might be different. Eg despite OP clarifying that dsis does not expect everyone to 'evacuate the pool area during quiet time' some posters are determined to view nephew being left alone for a period as unreasonable. I don't think it is, but we are all different.

Nephew struggles with eating outside. Fine. We don't know that Dsis has stipulated that no-one else can eat outside during the whole holiday. She may have just been giving g the heads up that their DS would not be able to manage this. Again, this is reasonable - dictating that no-one else can eat outside, ever, would be unreasonable.

DNephew finds school chat triggering. OK, she's made you aware. Don't bring it up. If it's brought up by the other kids then DSis can distract. Again, not unreasonable.

Competitive games - I'd think it reasonable for adults to not set up such a scenario, but again if it evolves naturally from the kids then DSis can redirect. I don't think reminding the adults that nephew struggles with these games is unreasonable.

Unless DSis has actually said she expects EVERYONE tofollow these rules at all times I'd imagine she's simply giving a heads up about things dnephew will struggle with.

I think OP's (and some pp responses) have been wildly OTT.

Exactly this! Two of mine, although very different, both had extreme issues with with going into shops by themselves. We're super rural & so tiny local shops in our village. But we're talking sobbing & shaking - absolutely terrified but unable to explain why. So we'd sit in the car & talk it through, it was a process & it took a long time with each one. Youngest (nearly 16) still has moments with going into places, though it now presents as belligerence, & that's fine cos he IS able to go & get his haircut by himself which is huge. (though I doubt he could go to any other barber lol). When tiny, he'd physically hide behind middle son in public when ppl spoke to them.

If eldest had to use the phone he would be physically shaking, virtually dumbstruck, but he had to learn how to cope for things like his car insurance etc. It was heartbreaking to watch cos he was so eloquent whilst actually talking but could barely hold the phone. Now he's 23, with a son of his own & does phone calls, hosp/Dr's, dealing with nursery, you name it!

All this had to be taught, thought through - coping mechanisms! It's essential they understand themselves & the differences & how to manage what's going on.

Dsis sounds like she's indulging, not helping her son. Maybe she likes the drama & I'm increasingly convinced they sought this diagnosis rather than find out what's actually amiss. PD, depression, anxiety, who knows?

My son is on a waiting list for assessment, his teachers all think he's autistic and we as his parents think he is too. I think there's a balance between accomodating my child's needs and also teaching him how to get on in the world. It sounds like your sister is too far one way with her expectations and you're leaning too far the other way with little empathy.

In your sister's situation I'd absolutely ask the adults to be considerate of my child's school trauma and not to ask him about school or mention in front of him anything about his cousins doing really well in school. I do wonder if that sort of boasting would be difficult for your sister to hear as well which might be partly why she doesn't want to hear about it.

I would not expect you to police your own children's conversations and tell them they're not allowed to talk about anything or play certain games. I'd actually use the competitive games thing as a chance for my child to learn to cope and practice some social skills with other children. Cousins are a safer way to work those things out than with children at school, and with adults in his family facilitating as well it means she could talk to her child and explain the rules and help him understand his own emotions throughout. That is something I'd do with my particular child, obviously I haven't met your nephew though so don't know what he's capable of.

Nephew needing time away to self regulate is absolutely fair enough. I wouldn't even question that as it shouldn't really impose on anyone else at all. I've done similar with my child in an air b and b with family, just took him upstairs and told people not to follow as he was getting more and more wound up and it was like a reset for him.

Eating outside would probably be a miserable experience for everyone if your nephew can't cope with it. Again, without knowing your nephew I can't say if it's possible to try and teach him to withstand it for the sake of others or not but i think I'd lean towards that with my child. Interestingly I think I'm probably also neuro-diverse but never got diagnosed and I also don't like eating outside. But I would do if in a big group and that's what everyone else wanted.

I see there is quite a lost of things the other kids can't do.
How unfair is that... Maybe you could ask your sister to do something else with him while your kids a playing diving games or whatever.
And there's nothing at all stopping you and your parents eating al fresco..
Your sister could eat inside.
While I feel sorry for the boy and can appreciate how difficult it is..I wouldnt have my holiday reorganized to suit one individual

I am autistic and ADHD. Many people, including children, in my family have one or both diagnosis. I don't think the requests are reasonable save for respecting quiet time - but that quiet time shouldn't be done in a communal area where others want to be i.e. the pool would mean noone else can use it. He can take himself to a genuinely quiet space, like his room, for tech or sensory seeking type activities or just rest. If he wants to use the pool alone he can, like anyone else who would want to do that without a diagnosis, get up early or speak to other people and ask for a slot when he can that suits everyone.

Even if you are ND, you need to be able to function in society. It does children no favours to adjust every single thing to their whim whatever the reason for it. Reasonable adjustments doesn't mean any adjustment, it means a reasonable one. The world of work will be a huge shock it he is used to any adjustment he decides whenever he decides.

Absolutely spot on. The sister should be saying “my son will need some quiet time so will go off to his bedroom for an hour, would appreciate if he’s not disturbed” rather than he wants the pool and nobody can use it. That’s just selfish. Similarly with eating outside, a reasonable adjustment would be saying “can we do some communal meals indoors and then if you want to sit outside for the other meals, we will sit inside.”

Wow I'm afraid you're losing my sympathy the more you post OP.

You sound irritated and fed up with your sister and poor nephew.

If you had the tiniest bit of empathy or understanding for what it's like to have a child who can't go to school you and your children would do this kind thing. They're not asking your kids never to talk to their GPs about school (and yes it did sound like bragging I'm afraid given you felt they only had so much to say because of their achievements, like another child would have nothing of worth to share if they weren't captain or prefect).

It's his holiday too.

He's not asking no one to use the pool!!!!! RTFT

Just not to DISTURB him aka talk to him during this time.

I will say none of the children are that resentful, they’ve grown up with him being different, same as my DS - the only sticking point is that nephew can be nasty or personal in his outbursts and with children having children’s minds they have a hard time seeing this as a symptom rather than a solid personality trait. It doesn’t hurt their feelings any less at that age knowing he’s ND, and that’s the only challenge we come up against.

@APATEKPHILLIPEWATCH ignore some posters, they are part of the ND cult "everyone has to adapt to my ND DC at all times". I've got an autistic 15 year old who has been absent from school in long periods so I know what I'm talking about. MY life revolves around my son but I wouldn't expect anybody else's life to do so. I constantly intervene (gently) when needed for his comfort or for others. If a game is not suited for him I will propose another one for him with me. If he needs quiet time I will walk away with him. If he wants to eat inside I will eat with him inside. I'm his mother and I know when he really needs something or when he's just being unreasonable- in that case I will tell him no because boundaries are important. No way I would give rules to others on what they can or can't do. I have just told family he doesn't like to be touched.

Your sister is being very unreasonable. It's her job to cater to his needs.

How does one use a swimming pool quietly? It’s de facto saying you can’t use the pool if you’re saying I need quiet time and leave me alone.

Or maybe, for EVERYONE's sake, she just wants to minimise meltdowns, distress and drama for everyone on this likely last family holiday.

Would you have forced your DC sobbing and shaking into a shop on their family holiday? Or knowing it's a slow and gradual process, would you allow them to enjoy the holiday and pick it up when you got home?