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!

Precisely, no of course I wouldn't. Same as I wouldn't demand 'no red meat' of everyone cos youngest won't eat it (think choking & involuntary retching when he was little), he just had/has something different & if someone else was coming then we'd sort his separate dinner.

Some of the comments on here are crazy!

I think the requests are quite OTT, i have 2 ND children in my care and they have had to learn to adapt to situations, we dont expect others to completely adapt their behaviour but we do ask for them to be understanding. Eg if we have visitors at Christmas my DS can cope with a certain amount of time of socialising with lots of people so he may go off to his room for quiet time, I wouldn't expect that he gets to sit in with everyone with headphones on and no one talk to him/be quiet around him, that is ridiculous.

Reasonable adjustments aren't completely changing everyone else's behaviours to suit 1 person!

I’m curious as to whether the other siblings have responded to yet, as based on what you’ve said, neither you nor they are going to allow your sister to dictate what you and your collective children cannot do or talk about on holiday (very reasonably, imo).

It’s a holiday for everyone, I would be respectful of these requests, and be careful not to do anything that will upset him, but I would not be following them to the letter.

Not eating al fresco on holiday because of one child, sorry no. Happy to eat inside a few times, but not every day.

It must be so hard trying to keep a child with these needs this calm and happy and having a break, but you can’t impose so many restrictions on everyone else and expect them to want to go on holiday with you ever again.

@TonTonMacoute this would be my logic too. Holidays are expensive and we bloody need them when we get them. I've been away with other people and the rule of thumb (that goes without needing to be discussed) is you go somewhere else if you need space, not that everyone has to get out of your way. Also that majority rules!

I think everyone is viewing this through their own perspective

I read the requests different
The can't eat outside - I don't assume this means they expect everyone to eat inside. This would be me making it clear I don't expect my child to be pushed to eat outside because they can't cope with this. I am making you aware now so this won't be an issue on holiday.

Normally we find family make things into an issue by thinking they can persuade child to do things they are comfortable with. Sometimes they get them to do and this is seen s a success but they don't see the price the child pays for doing it (or us by the things we then can't do as they recover)

If they are asking people to respect child can't get outside that is reasonable.

If they are expecting everyone else to eat inside for every meal than that is different and this becomes unreasonable.

The reasonable adjustment is to respect child's needs to eat their meals inside. The nice thing to do would be to have one or some meals inside to include the child.

@ByBoldOP OP very clearly said "When we go out for meals together we can’t eat outside as nephew prefers to eat inside"

Needing a quiet time daily seems very reasonable for me, may reduce the risk of meltdowns.

The child doesn't have to join in the competitive games, the other can make sure there are things they can do which aren't competitive.

Of course the children can talk about school when they aren't with or in earshot of their cousin. They may forget but cousin or the cousins parents can remind them "no school talk" and change the subject.

Perhaps nephew could eat inside, he is 11, not a young child, so will likely be fine with this.

OP, thank you for advocating for your children. You’ve obviously worked really hard on behalf of your DS and spent just as much effort to make sure your DD doesn’t miss out on anything. A lot of people are focused on DSis and DN. He has needs, triggers and trauma. She may be overwhelmed and burned out. Too many times people get so caught up in accommodating someone that they neglect advocating for themselves and their children. There is a balance and I applaud you for seeking it. I think you are on the right track. I think you need to continue prioritizing your children and agreeing to accommodate DN in ways that don’t burden your children.

My parents spent so much time and effort accommodating the ND children of friends/relatives, they completely ignored advocating for me. I was expected to tolerate and accept their abuse and do everything I could to keep them happy and not trigger a meltdown. If they had a meltdown, I was blamed, told off, punished and forced to bear the brunt of it because it was supposed to teach me to be better at accommodating others. The message I received from this is that I was not worth consideration and my job was to “set myself on fire to keep everyone else warm”. This caused me lifelong issues with my self-esteem, anxiety and set me up to accept abuse in my relationships.

I was the overachiever who was not allowed to talk about my accomplishments because it might trigger one of these children. These children were not taught coping mechanisms but I was taught to walk on eggshells. This basically taught me that my hard work is expected but not valued. I’ve worked so hard to believe that I’m worth consideration and have value. I still overthink everything I say and do and over analyze my interactions with others.

I have little to no relationships with most of my relatives. I have very little contact with my parents and no contact with the immediate families of the ND children. My parents have always patted themselves on the back over how much they did to accommodate these people but never acknowledged that it was at my expense. On the other hand, I fiercely protect my children. They are my priority.

My children have peers and friends who are ND. I have friends with ND children that we socialize with. I teach my children to make reasonable accommodations and do their best to not purposely trigger people. My friends have worked really hard on coping techniques for their children. We support each other in doing what is best for our children and families. I expect them to make decisions and behave in their children’s best interest and they expect me to do the same. When something normal is triggering their children, they intervene by distracting their children with coping techniques or remove them from the situation. They’ve never made my children or I feel at fault or admonished us for what should be normal behavior.

It’s not really helping learn coping skills for his future life is it. Your sister won’t be able to influence other situations like she is trying to influence this. She’d be better placed to help him learn how to cope when things get too much, e.g. taking himself away somewhere else for quiet time rather than expecting those around him to be quiet. He won’t be able to dictate conversation topics, avoid competitive situations etc in life so the focus needs to be on how he deals with or copes in those situations.

I think you do you. Sounds like she is trying to mitigate for possible meltdowns but I think it’s not unreasonable to put some boundaries in for your kids. They should t be expected to be told they can’t discuss certain things. I’m sure he can have quieter time in places other that the pool and competitive games kept to a minimum or maybe when he’s not there. Other than that, I wouldn’t change much. The fact is this child has to live in the real world and most kids go to school so impossible to run around asking every person you meet not to mention it. She’s being precious but your children need to have their needs met too and it’s everyone’s holiday.

Yes but this could be sister saying we (nephew and parents) or we (everyone)

We normally do full family meals on an evening and DSis has said these need to be inside on holiday because nephew doesn’t like eating outside. Not that they’ll eat separately. I imagine she doesn’t want him away from others to make him feel worse

Thank you for your post - I’m so sorry to hear that your family didn’t prioritise you and I think your post really shows that tip toeing around ND children like they’re made of China does have a ripple effect.

I'm starting to think you resent your sister getting a diagnosis for her son because it takes attention away from your son.

She sounds like she is trying to do the best by her child the way you are doing the best by yours.

Really? What a strange take

The difference being OP has taken ownership of her child's needs and ensures he works within his means and understands his limitations.

While the sister limits everyon else so her child doesn't have to.

I'm impressed with the way you're handling these people trying to rile you up with goady posts. I bet you've been fantastic at advocating for your son (and daughter where needed).

That's for his parents to manage, they shouldn't make it everyone else's problem.

Avoid discussion of school? Sure, you can do it between the adults and ask the kids. Hopefully they'll discuss school less but, given it's a large part of their lives and they are kids, they're unlikely to not discuss it at all.

He needs quiet time? Of course. No one will disturb him in his room surely?

No competitive games around him? Then remove him from competitive games rather than restrict what other kids can and can't do.

I think it’s acceptable for adults to avoid asking the other DC questions like ‘how’s school going?’ or ‘what are you learning in school this term?’ in front of DN. Also to remind your DC not to ask DN why he doesn’t go to school or start a discussion about it.

It’s not acceptable to expect your DC to avoid talking about their friends from school or anecdotes about things that happened to them at school. The same as they can talk about brownies / ballet / scouts or swimming lessons even if DN doesn’t do these things. Poor DN must be having quite an isolated existence, but it would be sad if his cousins felt they couldn’t be themselves around him either.

Quiet time I not unreasonable. Quiet time by the pool is an over the top ask! Children + pool = play. Perhaps there's a better area for him to be and relax?

Well, as OP has clearly stated that she understood and supported her sister's quest for a diagnosis for her son, you are incorrect.

OP has said that she never expected any special treatment for her son's disability and no-one in her family did anything to accommodate his disability, e.g. OP didn't try and stop the other children participating in activities that OP's son couldn't physically do or make them feel bad for doing them and thereby leaving him out.

It doesn't sound as though OP's son gets any more attention than the other children and it does sound as though OP tries to manage his condition in a way that doesn't have a negative impact on the rest of the family.

Unfortunately DN will find, as he gets older, that the people around him (not necessarily his own family) are often going to behave in ways that he finds difficult.

Just because he finds some behaviours difficult doesn't mean that he cannot start developing coping strategies. Being with his family - who will be most sympathetic and know him best - sounds like a good place to start learning some of these strategies.

I've commented before but thought I'd add that my kids have different abilities to cope with many things as they are neurodiverse. I am aware of the challenges! In a large family or group of people it doesn't always mean anything is 100%ideal for everyone. I accept that one of my children loves the beach and one detests it. What I don't do is say to everyone we are ignoring your preferences or we are 100% making your preferences the top priority. I get that we need to be sensitive to everyone's needs. From what you've said her Op, it feels like your sister is saying her son's preferences are 100% the top priority. She's probably afraid of the holiday being a nightmare and then making demands.
When one of my children is overwhelmed she can't cope with a lot of noise, one of my children finds lots of people she doesn't know really hard....there are things....they get the option of being self aware and regulating themselves. We don't tell the whole family to be quiet. We don't tell our visitors to go! We work out what the child can do.... mostly spend some time in quiet or in their room or doing a separate activity. Your nephew shouldn't be able to monopolise something like a pool just because they want a quiet time next to it. There are private spaces and more public spaces whether you are in your house or on holiday