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!

I would want to say that somehow there needs to be compromise for everyone. You have children as do others that need to feel comfortable and enjoy their holiday that might necessitate compromise all round.

I do think it's different. A child unable to go to school due to EBSA is going to have experienced trauma at school.this isn't wiped away when no longer going to school. Someone with PTSD will still suffer after the event. Certain things can trigger PTSD response.
For my daughter conversation about school trigger her PTSD. It's not the conversation about school in general terms but these conversations do tend to swing round to her 'when are you back in school?' 'your missing so much fun' and this is an issue. Because even if they don't her anxiety heightens, she suffers from the expectation that it will because in too many cases it does.

Not being able to do an activity due to physical disability is frustrating and upsetting but doesn't cause physical distress and symptoms of reliving trauma.

I have no idea of the specifics of your nephews situation but my child's situation isnt unique for children with EBSA

These replies have been helpful and I will reply to DSis - I’m thinking we should agree with all kids about having a “down time” system whereby anyone who wants to be left alone for a bit sticks headphones on even if they’re just reading and it’s a mutual respect rule “If they’re wearing headphones do not disturb and they won’t disturb you when it’s your turn” - including adults! But also limiting the time.

It runs way deeper than that for him unfortunately

Not being able to do an activity due to physical disability is frustrating and upsetting but doesn't cause physical distress and symptoms of reliving trauma

With respect you are entirely wrong.

Its actually outrageously offensive to suggest children with physical disabilities don’t experience trauma or physical distress.

Please explain?

I have a disability (from birth) but while i can't do lots of things due to this. It isn't the same as relieving trauma like my child has to.

But maybe it depends on the disability and if the disability was from birth or acquired ?

Why on earth would you think your experience of disability is the same for everyone? Presumably you’d be deeply offended if anyone suggested all NT children are the same?

I shouldn’t have to explain why people with physical disabilities experience distress and trauma. It should be obvious.

My son’s was born with his disability. He has experienced more pain and trauma in his short life than most people experience in 80 years. but you think because he’s NT he could possibly have?

Have your other siblings responded to her requests yet?

I have an autistic 11 year old daughter and I have a physical disability as a result of cancer. You are not being entirely unreasonable as sounds like these were demands rather than a friendly discussion of his needs to avoid meltdown. But your whole tone sounds very unsympathetic.

If there is a big group going why can't your children talk about school and their achievements when he's not part of the same conversation? A signal for quiet time for all is a great idea. Arranging to eat inside for one meal every other day or so is nor a big deal.

Competitive games can set my child off too (though she does enjoy them) so we (parents) make sure we are available to distract if we see it becoming difficult and playing something else. I think this is the only one difficult to manage as most games have a competitive element and they all need to have a fun holiday. Maybe take some collaborative games too, or suggest things they can do as a team. We used to throw loads of 2ps into the pool and see how quickly we could retrieve them all together!

It's not fair to stop his cousins from playing games. He can do another activity if he doesn't wish to join. Quiet time is reasonable, him dictating what others talk about and where they eat is not.

Oh but my point about a physical disability is I find most people are more accommodating to me as they can see why I struggle with some things and they don't understand why my daughter can't cope with certain situations.

No that's not what I meant - I am sorry if I caused offence.

I understand trauma linked to events
Ie medical trauma due to medical interventions results in trauma about any thing linked to medical intervention any way.

What I was meaning wasn't dismissing anyone's trauma -
I just feel like trauma from any PTSD is different to not being able to do x because a disability is a contraindication. Your child has trauma then he is also suffering from that trauma.

Person A: who disability mens they can't get upstairs could be angry, frustrated and excluded from an activity that means they can't get upstairs
Reasonable adjustment should be made to include.

person B whipped because the disability prevented them getting upstairs has experienced trauma and being expected to get upstairs or being excluded because they can't get up stairs is likely to result in a PTSD response of reliving the abuse.
.
Neither is right. And feelings in both situations are real and shouldn't be dismissed as less valid.

Autism/ADHD are conditions, not disabilities.

I think the problem here is that the sister claimed 1 hour of pool time exclusively for her son and the op has her own difficulties. How dare her sister claim he take top priority within the family. Unless he’s giving out gold then. NOPE. It’s just an unrealistic and unreasonable demand that makes it’s so off putting. Her may come first to her but everyone’s children come first to us and you don’t demand a child to be put on a pedestal bc she thinks this would be great for her son. It’s disgust,y self serving and everyone has problems. Maybe she shouldn’t go bc her demands are simple outrageous

This all sounds like unnecessary hard work & I seem to be in the minority in being a bit suspicious about his diagnosis being adhd & autism rather than something else 🤷🏼‍♀️. NHS & TWO private clinics refusing him the label DSIS wants? Clearly he needs support of some sort but I wonder if what they've decided you all must do actually helps him at all. It don't get the impression you think it's the right diagnosis either - which isn't the same as thinking he doesn't need a diagnosis at all...

However, it's fair for everyone to be aware & make accommodations, of course, but there are limits. He is definitely old enough to understand (we've always been dead straight with two of ours about how their experience of the world is different to most others, and it requires both 'sides' to understand that. It's not a get out of jail free card & self awareness is very very important) & whatever his condition it's also important he learns to fit into a round world as a square shape.

Probably all you can do is say 'oh bless him, of course we'll do what we can' but I'd definitely want clarification on what games aren't allowed to be played - I don't think it's right for all the kids to suffer if he is genuinely unable to cope, surely combining his quiet times with those kinds of games would be a better idea?

I've read about entire extended families going away in novels. It usually ends up with some terrible revelation about one of them having an affair, or somebody gets murdered. Full house if there is a serial killer roaming around and they die off one by one! These have persuaded me that these kinds of holidays are a terrible idea and need to stay in the pages of novels.

It doesn't sound like DSis is trying to kick everyone out of the pool area during DN's quiet time. She's saying that if he's sitting on the lounger with his headphones on, he doesn't want to interact with anyone. Everyone else can do as they please so long as they leave him alone. I can't see how this is an unreasonable ask. Why should he have to be locked away somewhere else because others can't respect that?

OP, I like your idea of telling everyone that wearing headphones means do not disturb. I think it is a great way to ensure everyone gets the downtime they need.

It seems like you are frustrated with your sister. Reading between the lines, it seems like she is pushing for all of these accommodations for her child, but isn’t willing to accommodate anyone else. It seems to me that she is trying to put the responsibility of managing DN on the other children so she can have a break. I personally would not be allowing my DC to shoulder the responsibility of managing DN. I also wouldn’t allow DSis to tell off my kids when their perfectly normal behavior upsets DN.

She needs to start working with his medical team now to teach them some coping techniques for when conversations involve things he doesn’t want to hear and the other children wish to play games he doesn’t want to play. She will also need to be on hand to supervise him with the other children and be ready to intervene. Not to admonish the other children, but to redirect DN to his coping mechanisms.

School Is a massive part of a child’s life. Everything seems to revolve around it. Friends, sports, hobbies, clubs all seem to relate to or originate at school. I would find it unfair to tell my children they couldn’t talk about school. I would expect DSis to be available to distract/entertain DN when these conversations become too upsetting for him. Competitive games seem to be what most kids gravitate towards. While I would ask my kids to take turns playing games that DN would also enjoy, I would expect DSis to take over entertaining DN when the kids want to play something he doesn’t.

I would try to have a conversation with your other siblings, come up with some compromises and then present them to DSis as a united front. I think if your children are old enough and able to play with minimal supervision, then you shouldn’t be expected to constantly monitor their play and conversations. It would be a kind gesture to offer to give DSis a couple of hours off provided you can handle DN, but ultimately, she will need to be on hand to supervise DN. I imagine the parents of the 4 year old also need to closely watch their DC. This is just part of parenting.

Sounds like your sister had to fight hard to be heard in getting a diagnosis for your nephew. I know how that feels, nobody would listen to me concerning my daughter and she would be a young adult before being diagnosed with Autism and Adhd. People would judge me because of her behaviour and put it down to poor discipline.

If I can tell you don't believe her then she certainly knows. She will be stressing that your nephew will kick off and is desperately trying to for-see every event to avoid this. You have no idea how exhausting it is constantly fighting for a neurodivergent child and constantly feeling like you're drowning in failure as a parent.

The more she feels judged, the more she will try and control the holiday to avoid conflict. The best way to start supporting her is to stop the eye rolling judgement, then she will be able to relax a bit which will also have a positive knock on effect on your nephew.

Honestly OP, you sound like a perfectly normal person with normal views to me. And a great mom. I don’t think the views on here are representative of the real world. Well, at least I hope not

I agree with this...however you can't control young kids all the time, so your sister will need to accept that the kids will try and that's good enough.

I really think you need to be assertive with her and say it's your holiday too and it can't all revolve around the needs of one child. She's being excessively controlling (understandable in a way as she's desperate for a holiday without meltdowns but it is what it is...you can't all have your holiday completely revolve around one kid).

Or don't go if you can get your money back. Sounds a bit crap tbh.

Very sensible post

Depends on the disability. Autism and adhd impact every area of life all day every day. Dismissing that because your child has a “disability” which could be anything isn’t pleasant.

I have children with autism and adhd with high flying cousins who very much don’t. So grateful for my lovely empathetic and thoughtful sister.

Even if her nephew wears noise-cancelling headphones, he would still be disturbed at the pool by the splashing of the other children if they are still playing in the pool during his quiet time.

I took this to mean that he would need to have the pool to himself for the hour of quiet time.

Also yes ND is annoying,your sister has to live with it day in and out. Shes probably worrying about meltdowns in front of such an unsympathetic sibling. She don’t choose it. You aren’t living with it and it’s a short period of time. Im sure you can cope.Such is life. Pretty sure you’ll accommodate your elderly parents