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!

We don’t know the disability( it could be anything)and it’s the op who is ableist and dismissing the needs of a disability.

🤣🤣 I actually enjoy 90% of the holiday and spend the other 10% thinking “Why the fuck did we do this again”.

Also disabilities differ in need. The disabled don’t all have to march to the beat of the op’s drum and her view of handling disability. Just because her child’s disability doesn’t need the same handling as his cousin doesn’t mean it’s the same for all.

I suspect your sister is currently in a panic about making holiday accessible to your nephew. My son has adhd and autism and when we go away he know the routine in advance otherwise anxiety gets to him badly.

Do I think her rules are ridiculous? A little. But I also understand the anxiety a parent can have about preventing a meltdown that may upset more people and alienate the child more leading to what she believes to be fair rules so everyone enjoys the holiday and not thinking on everyone else

Personally I say cut her some slack and actually talk to her.

This post is interesting. I feel like there’s a competitiveness between you and your sister, you say like it feels like she’s won if she manages to silence everyone but you also talk about how much you love each other.

Sounds complicated to me and I feel like there’s more to it. I would 💯 say to my kids try not to talk about school when cousin is there. There will be times he isn’t around, probably loads.

As I said before though I feel that there’s more to it.

I think this is spot on re how I feel - that the expectation is on me and my kids to manage another child’s day. My DSis has always been reluctant to teach him coping techniques and even more so since his diagnosis. She is very much of the belief that everyone should provide reasonable adjustments - which I 100% agree with in professional settings such as school but she expects it of individuals just going about their day. Without considering those individuals too have needs and preferences. She has joined lots of ND Facebook groups and honestly they sound like totally mad cults that seem to hate schools, providers and people who don’t align with their views completely, and has made a hobby of diagnosing other people - including my son who apparently has ADHD and my DH who is apparently autistic (rather than just being hyper and quiet respectively)

And you’re spot on about not wanting to manage play - I’ve put the graft in for 12 years, have come out with 2 kids who are v good at managing their own needs with a bit of help thrown in from me occasionally and have earned the right to kick back and not always be all over checking what’s going on.

As you DSis - I wouldn‘t go on holiday with the rest of your family anymore.

I am also finding the responses fascinating because there is such a split between those who think the ND child should be taught to cope with his environment better and those who think lots of things should be changed to accommodate him. As the mother of an autistic DD I am in this push pull situation all the time, it isn’t easy to navigate. I don’t want her to face extreme anxiety but at the same time feel she has to cope with the world. In your situation I would play things by ear. The nephew might react differently in a new environment than she is expecting. I have seen my DD react much worse and much better than I anticipated in all kinds of situations. I also think it is good to keep exposing him to things that are tricky as he can’t avoid competitive games or conversations about school for the rest of his life, but with the foresight to know you will all need to dial right back on things or try something different if he is visibly starting to be overwhelmed. I totally feel for your sister, trying to avoid meltdowns, I usually take my DD on holiday on our own as I know exactly how to have as good a time as we can when we don’t have to compromise with anyone. But I also want her to fit into society so I won’t stop trying to make her deal with challenges either. Or thinking about others needs. That is very important too.

Again as I’ve said I have a physically disabled child - having to fight for a diagnosis, recognise symptoms and get appropriate medical support is not something exclusive to ND parents you know. I do know how it feels - it doesn’t mean I support every wish of hers when it involves expectations of me and my kids

This thread is interesting because it’s thrown up people who really think that having a physically disabled child is not much of a challenge and they get everything handed to them but having a ND child is hard work and no one cares about them - which is a vibe I’ve felt from my DSis before - that the world accommodates my DS because it’s “visible” whereas she has to fight for recognition. It’s not the case at all and it’s also not a competition. Do you have ANY idea how tough it is to fight for decent pain management for a small child?

And I have a son who has had many hospitals stays, unpleasant interventions, spells of extreme pain and a treatment plan that he will have to in some way stick to for life - it’s harder for him to achieve great things than his peers so why shouldn’t he show off and talk about what he’s achieved to his GP and aunties/uncles?

Autism and adhd impact every area of life all day every day.

So do physical disabilities. HTH

Me too. Why do people with physical disabilities have to be minimised to validate those with ND conditions?

I am not ableist - throwing a Big Word around as an accusation won’t get you the result you want. I care for a disabled son. I’m aware of needs/preferences, but that doesn’t mean NEVER trying to teach people who to cope or adapt.

ADHD autism is a condition not a disability BTW.

So should the same goes for the reverse - I don’t have to match to the beat of my sister’s drum regarding nephew’s condition?

Yes the playing down of my son’s disability by people who call ME ableist is rather jarring, but I’ve been called worse by better people.

Will definitely suggest the headphone idea - but I’m afraid I’m not telling my kids to never mention school around him. My son especially has achieved so much in The face of managing a (often painful) disability I’m absolutely not telling him he needs to STFU because that’s telling him he doesn’t matter as much. He does even though some people seem to think a neurological condition trumps a physical disability and that he doesn’t suffer pain or trauma or difficulties

I have two children who are Autistic and very likely ADHD. I absolutely agree about quiet time and having him left alone, it's something even young children can learn but I agree with you this should be respected for all the children and your DN needs to adhere to it as well. My sons know when to not bother each other, as do other children in the family including my 3 year old granddaughter.

My boys are always told if they don't like the games or they are going to be stressed out by it then they don't join in, they find something independent to do or ask to do something else. We also encourage all the children to take turns deciding the games so all get a chance to be involved.

I wouldn't give up eating outside, could a solution not be found? Make sure he is shaded or under a canopy?

I wouldn't even give school talk a thought, how much is it actually going to be discussed? I'd probably avoid bringing it up in front of him as an adult but I wouldn't even mention it to the kids

Thank you, I think your point about playing it by ear is spot on - I’ve learnt with any condition or disability that needs and triggers change rapidly and this is weeks away yet.

I'm in some Autism Facebook groups.
You're right.
The batshittery is endless.
And so many of them are setting themselves and their kids up to fail.

Now and again there's a post from someone who's kids are now a lot bigger then them and talk about theor regrets.

I see it in a professional capacity as well.
Parents can often be the most disabling factor in the child's ND journey.

OP I have AuDHD DD15

She has had to learn to manage things.

I love the idea of suggesting that everyone has down time if they have headphones on.

But no you won't be micromanaging pool play. Suggest your SIL gets in with nephew if he decides to participate so outcomes can be managed.

School talk, I would also not be agreeing to this. But I would skim over this...just say of course we will be mindful of this but I can't stop the DC telling the GP their news!

I think that your getting a hard time here, your sister basically went diagnosis shopping after failing to get a diagnosis from the NHS (usually gold standard) she then went to 3 separate private drs until she found 1 that would give him a diagnosis and is now using it to basically control the family, that would be a hard no from me.
As someone who has asd and is the sole parent to a child who has asd and adhd (amongst other issues) the only one of her demands that I would agree to is the quiet time but only if he accepts that others will use the pool during that time but won't engage with him until he's ready to join in with family time otherwise he needs to take himself off to his room for an hour or so, as for the rest she's asking for to much she can't expect anyone to have their conversations limited nor the type of games they play (though playing the odd game he enjoys would be fair). If he's been able to eat outside during other holidays, then he can on this one, too.
If he truly does have ASD or ADHD (btw what ADHD meds is he on) then both your sis and nephew need to learn how to manage his issues without trying to control everyone and everything around him because in the real world that can't happen and you and your family would be doing him a massive disservice by allowing them to control your family

So what is his disability?

In my experience the last thing kids want to talk about on holiday is school. Sounds more like it’s you that wants to engage in a brag fest.

Autism and ADHD are considered to be disabilities in the UK

If OP wanted to post this. She would've

2/3 of my children love talking about school.
It's where their favourite interactions and fun comes from.

Have you considered people are different?

She is the parent who knows how her child’s disability needs handling. You don’t get to tell her how to handle her child’s disability based on how you handle your child’s completely different disability.

You are an adult who can accommodate that. Reasonable adjustments for ND are protected in law, what a shame the child’s own aunt is so dismissive.