Holiday with another family and behaviour of their ASD child

Then they could/should have outlined to the OP clearly and succintly what the holiday would/could entail so the OP and her family could make (oh whats it called) oh yes.............an informed decision.

Roblox is a platform where games makers (amateur and professional) can upload their work. You can customise your little person and then do obstacle courses, hide and seek, collect and care for pets, dress up and strut down a runway, go down water slides and challenges etc (this is what my daughter is into, anyway).

You can play at the same time as friends and collect points or use actual money to buy 'Robux' to buy stuff with.

You can also listen to a billion tedious YouTube videos where influencers talk you through their Roblox playing.

See also: Minecraft (which is more creative but also more violent).

The YouTube part I find very tedious, but that's YouTube for you.

Long story short: if you want to bond with a kid into this stuff you need to attempt an interest (also a good way in to open conversations about whether people are who they say they are online, etc).

Thanks so much for the replies to my post
Sounds like carrying on with taking non disabled sibling out is a good contribution
Roblox is one of the major obsessions. Maybe I do need to try to understand it a bit as I have barely any idea what that even is.

I’ve found this thread really interesting. We have friends with a child somewhat similar to this. There were very few problems until he started school - until then we used to holiday with them but they then said that wouldn’t be possible any more (which everyone here seems to agree is what the OP’s friends should have done). We do still meet up a couple of times a year and my DC don’t like it to be honest, but it’s important to me and DH that our friends can still have ‘normal’ (ish) family days out with friends, so we do the best we can.

OP rather than going to the bar with your friend and her DD, is there not a balcony or patio where the two of you can have a drink while DD is safely in the room watching a film or something?

Siblings often miss out because their brother/sister can't cope with days out etc
My son has severe autism and learning disabilities, when we gonout he can only manage an hour or two and his behaviour can be extremely challenging
I wouldn't expect anyone to offer to take him out and finally after 14 years we are getting some respite which gives us a break
I think it's nice if you to support the non disabled sibling so they don't miss out too much.

@ThePure

My family member is exactly like you describe and luckily he has funding for a significant chunk of respite - he actually spends his days in respite or a specialist school. This was because his parents got to the point they couldn’t cope, as the younger siblings were at risk and getting injured. Social services aren’t daft and know it’s cheaper to provide respite than a care placement.

@ThePure you sound like a kind person. I think supporting the sibling is the most useful thing to do, as you are.

You can try to meet the other child where they are so to speak. Watch a bit of YouTube with them. Play a bit of Minecraft/Roblox/whatever. Side by side with something to talk about. Low key. DuoLingo. Whatever floats their boat.

Maybe suggest his mum/dad look into MindJam.

If you are good with paperwork you could offer to assist them with the EHCP/tribunal process (I assume by 'denied funding' you mean a refusal to issue an EHCP or a refusal to name a suitable school?) Those decisions can be challenged but the paperwork is epic. There are a lot of other options out there for education but they don't advertise/aren't well known.

I've got a 6 year old sen boy and he would be difficult on holiday with friends so I wouldn't put him or others in that situation. Hopefully your friends won't after this debacle

We have a young family member who has PDD in the context of a genetic syndrome. It is incredibly hard for his parents and sibling. It impacts every aspect of their lives. He is regularly excluded from school but has been denied funding for a special school. Even most special schools will not take him as he has normal intelligence despite his extremely challenging behaviour.

The description that a PP put of Timmy is a lot like his behaviour. Being asked to do or to stop doing something triggers an almighty meltdown which, as he gets older, is actually dangerous. His parents are covered in scratches bruises and bit marks. He has smashed up their house pretty comprehensively too eg games console controller through the TV screen, holes in the walls.

I would love to be able to babysit to give his parents a break but honestly I don't know if I could manage it. I have offered to try and to follow their strategies but his parents feel he really can't be left with anyone else. I usually end up just taking his sibling instead which is nice for them but doesn't help his parents.

Trying to include him in family events is challenging. Going out for a meal or staying in a hotel is close to impossible. A picnic outside or camping is more likely to be successful. Even inviting to our house carries a risk of my kids stuff (or actually my kids) getting smashed up.

They don't try to get him to sit at the table, eat any food he doesn't want (resulting in all beige diet), wear appropriate clothes or say please and thank you and this is understood as rudeness by older relatives I'm afraid. He spends a lot of time gaming and watching YouTube videos on topics he is obsessed about on a loop and being asked to do anything different to that is a problem. The description of 'Timmy' throwing something in the pool the next visit rings a bell. Our relative will often seem to do stuff that js provocative even when appearing calm and it does look deliberate. I can try to understand that but my kids really don't.

I do understand that the best way to manage him is to reduce demands but what is needed is so different to 'normal life' that I do wonder how will he ever manage to function when he grows up because the world is full of demands. I just hope he can learn strategies to cope in the end.

If anyone who lives with this can suggest what they would find helpful for a family member to do I'd be interested as I hate to see them suffer but am stumped as to how to help. They don't want to talk about it. I think they feel disloyal to complain about their son. They often decline invites or offers that I make and don't suggest what would be more helpful. They have said it's such a struggle day to day that offers of visits or days out are just more stress but it results in their lives being very constrained. They do accept my taking his sibling out but then I feel bad for leaving out the SEN kid but they say he prefers to stay home anyway.

SEND board and SN boards. Not sure if there is a specific PDA thread but demand avoidant features come up a lot.

Think it is important that ignorance and prejudice are challenged on these threads - there is so much blaming of parents of disabled children by people who sadly appear to need to boost themselves by feeling superior to others, when in reality they have little insight, and have never been tested in the same set of circumstances as a parent. And some really repellent attitudes towards disabled children are on display - usually because people seem not to be able to grasp the implications of cognitive differences and developmental delays.

I’d explain that you don’t want to cause additional pressure for your DC and this girl is obviously not coping with the transition to holiday. They need to access help and advice on autism strategies and or PDA. I’d get my children out of there pronto no way would I pay to be in this environment.

This thread has been heartwarming if a bit painful to read because so many on here do get it. Is there somewhere where you all gather on MN? Is there a pda thread on here?

OP’s meeting in the bar could be maybe avoided by her friend being reassured that OP doesn’t hate her and by being reassured that OP is both able to take care of her own holiday experience and hold on to the friendship.

OP may not realise the physical need for friends child to be near her mum as a safe person to allow the child to be calm, or that kids with autism and ADHD are often very poor sleepers so the other mum may have a very complicated evening routine. OP might not realise or think it’s odd that the friend can’t ever have a babysitter in for her kid. OP’s friend is probably bloody knackered by 7pm and ready for bed. A lot of us have been there. The friend offering to meet is probably doing so out of a want to hold on to the friendship only. Perhaps OP could take some of the pressure off that.

To those now bitching about the mum being unable to leave her DD - intense separation anxiety is really common with ASD children. Especially with the mum, who is almost always the "safe" person for the child

I completely understand why she cant leave her. But do you really think taking her out to a bar is a good idea? Thats pretty boring at the best of times for most kids, let alone a child with high needs

Nobody has bitched.

To those now bitching about the mum being unable to leave her DD - intense separation anxiety is really common with ASD children. Especially with the mum, who is almost always the "safe" person for the child.

If the mum is already scared of further pissing people off who have already complained about her daughter, she is probably too worried to leave her at the complex knowing full well that it will result in a very intense meltdown until she returns.

And yes she probably needs to find a way to manage the separation anxiety for both her and her daughters sake, but it is a hard process and a holiday in a strange environment with tension already at its peak is NOT the time to push this.

Why would her child behave any better in a bar? I would just decline and say maybe it's too much. I don't know why you are intent on being around them. If anyone slaps my child then I would cut them out immediately but somehow that's ok with you.

have suggested that tomorrow night me and her go out for a drink child free to a little bar down the road but she said that DD will not let leave her so she is going to bring her with her

Ooft.

We used to go away with friends who's children had challenging behaviour, one with Asd. We did it for many years. The parents never said no to their children either.
We tried to go on day trips without them but they got upset by that. It was very frustrating that we had to put their children's needs before our own children all the time. All the fun ended with their children having melt downs, swearing, spitting, fighting, trashing rooms.
We tried our best as we did enjoy their company. We still see them but only for short periods.
I think we would of had a huge fall out if we continued to have holidayed with them!

Just push back and reinforce the boundary. It's your holiday too and she has absolutely duped you by not being upfront. She's pushing your boundary again by saying yes- if DD comes. Not simply sorry, she can't make that work due to DDs needs (which would be fair enough) or she will speak to DH and try and make it work; no, her assumption is that you should just go along with her stance. No self awareness and it's not helpful to anyone.

"That's OK, but I don't think a bar is the best place for kids and I really just want to catch up 1 to 1. Ill be ready for 9pm so message me if DD settles woth your husband, otherwise hopefully we will see you around at breakfast tomorrow."

@upoutandin87 sounds like you’re being kind and diplomatic to me. From what you’ve said your friend is having exactly the kind of dark time on this holiday that many of us with children like hers have been guessing at. If you’re able to have a good time with your own family and offer her a bit of moral support and reassurance you’d be doing her a great service. You might find it improves the whole situation if she’s not worrying about how much you all hate her for doing this. If she doesn’t feel able to leave her daughter maybe ask her where you could go that would allow her to sit and talk for a bit. You might have to have your drink and chat sat on the hotel room bed whilst daughter watches telly rather than at a bar. If you’re with the child you want her somewhere safe and contained and away from judgemental eyes so her mum can relax.

She knows they’ve fucked up, but I’d guess she was trying for a bit of normal for them all. The fact that they’ve pulled away suggests that they’re trying not to make it awful for you too.

I really hope you can salvage some fun from this situation.

Just wanted to say thank you for your comment.

As a parent of a ND child, I find some of these comments about ‘setting boundaries’ and ‘living in the real world’ tone deaf and they clearly come from people who have NO experience of ND children.

For parents of NT children - try to be kinder, try to understand or if you can’t muster that, perhaps just keep your unkind thoughts and opinions in your head. I feel sorry for the mum the OP is referring to, I hope she can find her people and gain some better friendships.

When you say other people do you mean other people in the hotel complex? At least they’ve done it for you then and she seems to have realised.
That’s a shame she won’t come out with you and leave the child with her father. Could she wait til she’s asleep?

@InterIgnis you're absolutely right, OP doesn't owe anyone anything in this situation; she should seek to meet the needs of her own family on their holiday, this is obvious. I've not taken issue with that at all.
I'm also feeling sorry for the woman who never gets a holiday from what is a really rough deal, but gets to have her parenting critiqued on a parenting site. It's possible to feel bad for two people involved at opposite ends of the same challenging circumstance simultaneously.

@Violay I did say 'better regulated', not 'well regulated'. I did acknowledge that the OP's friend's other children found their sibling's behaviour challenging. It's a really tough situation for all members of a family such as OP's friend's, and now also, by extention, the OP and her family.

It really doesn't if you have a level of knowledge about neurodiverse children. This sort of parent blaming really makes life for families of disabled children pretty awful you know. It makes families stigmatised and undermines parents mental health. Perhaps reflect on the impact...?

Autism stigma also extends to informal caregivers in the form of ‘courtesy stigma’, that is, the stigma experienced by individuals who are closely associated with the individuals with a stigmatic mark. This type of stigma includes the blaming of caregivers for the onset of autism and deterioration of their child’s development, an expectation that they should be ashamed, that they lack competence in their caregiving role, and that it is best if they are avoided and/or pitied (Milacic-Vildojevic et al. 2012). Holding such views can lead to caregivers being socially rejected (Gray 1993; Corrigan et al. 2006).

From: Papadopoulos C, Lodder A, Constantinou G, Randhawa G. Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health. J Autism Dev Disord. 2019 Apr;49(4):1665-1685. doi: 10.1007/s10803-018-3835-z. PMID: 30569408; PMCID: PMC6450836.