Is this reasonable criticism of us and how to respond?

[RedYoshi]

I've name changed because I'm aware I may get a pasting here.

SIL (DH's sister) today sent me and DH a message basically saying how she's upset that we are not welcoming to her son / our nephew - let's call him Ben.

Ben is 14 and autistic and nonverbal with high needs (sorry if I've said that wrong). He is a gentle boy and not seriously destructive but it can still be a bit stressful to have him over to visit. He likes to connect his devices to our speakers and play the first 20 seconds of songs very loudly, constantly skipping between songs. This is just what he has always enjoyed doing - it is not fun to listen to and if I'm honest it stresses me out but not a huge deal. He will also pick up small objects and chew them, which can be upsetting for our children when it's a toy that gets ruined. We do try to lock everything like that away but sometimes forget something. He does not interact with us at all. He also scares our cat (completely unintentionally - he pays the cat no actual notice - it's just the way he moves and the sounds he makes), but the cat is able to go out or find a place to hide.

This is the way Ben is and we accept this - or so I thought, but it seems SIL doesn't think that we do accept him. The trouble is that although we say yes to visits whenever we can and do what we can to accommodate him, she realises that we don't enjoy Ben's visits to our house, which being strictly honest is true. I do like to see SIL so I do like the visits overall. We are friendly and usually willing to drop everything when they drop in, but I do prefer when SIL comes without Ben.

We also visit SIL at their house, and then Ben is either in respite (he's home every other week) or playing his songs in his room. We say hi to him of course and other basic friendly stuff but of course he doesn't visibly respond in any way. We ask SIL and BIL how he's doing, which I do care about.

Am I a horrible person? Maybe I am. I know it must be very hard for SIL and I do feel shit about it and very guilty. Should we be making more effort with Ben, and if so how?

I think you reactions and concerns are totally valid, so don’t feel judged by what she says.

But at the same time she obviously finds it hard having an autistic son and all that it entails.

it’s one of those situations whereby both situations are totally valid.

There’s some good suggestions above.

Are there particular sensory toys that might mean he isn’t acting out sensory seeking behaviour with your things? We have a sensory toys bucket and just the act of tipping them all out can be fun for my autistic son (but it really depends on the individual - for some kids this would be too much). I would ask your SIL if she can recommend anything specific he would enjoy. Even a small Casio keyboard or kids toy that makes sounds - ideally with headphones) might be a good shout?

Sometimes if you can approach a sensory need from an OT/play perspective that addresses the specific desire it means you have a better chance of having a happy, regulated child/teen - even better if it doesn’t create a ton of anxiety for everyone else.

You sound like a very nice, caring person. You do welcome Ben although you find his visits challenging which is fair enough. I wonder what your SIL expects you to do!

You have to lock the children's bedrooms to keep their things safe?
How do the kids manage to access their own bedrooms when this visitor comes?

I wouldn't be happy with any visitor who constantly sought out to destroy my stuff. Or who I had to lock up bits of my house to keep them safe from the visitor.

How can that not be a major choking risk if Ben chews on Lego?

Why can't parent bring their own items for Ben to safely chew on?

My dd is like Ben, none of our family visit, I have no relationship with my brother and his dc, people avoid us and it feels like my whole family live a lovely life that we are no way allowed to be involved with. I’m guessing your sister is feeling isolated and not included due to Ben having autism and people not making allowances for the things he does.

I have great friends, with kids who do visit, friends who include my dd in everything and who’s kids tolerate her weird behaviour and except that our house is I bit crazy.

Maybe you can visit Ben more in his home, where he can be himself, aways from your cat and your kids toys/things so he can’t damage them?

Just wanted to say that you sound like you’re all doing your best, so I wouldn’t beat yourself up about it.

When he visits, if this a known thing that he does, why aren’t the kids precious items put away somewhere he won’t access them? I know it’s an inconvenience but it would save them getting chewed and your poor SIL the awkwardness of this happening when she has enough to deal with on a daily basis. If he’s in respite she will still have medical, educational and life admin to deal with and still be emotionally and mentally connected to him and this whole issue when she has left your nice, ‘normal’ home and family. She didn’t ask for this, her son certainly didn’t ask for this - just be thankful it isn’t one of your kids FFS, stop pulling faces and try to help her out by removing things for the duration of his visit you can easily put back again once they’re gone. Jesus.

I think she also needs to accept that her son's behaviour is stressful, though!

She could be a lot more helpful by explaining to you what exactly it is that you could do, rather than just criticising you for your natural responses to having a child in your house who is behaving in a very unusual/ stressful way.

It's not OK for her to just expect you to act as if he is behaving normally, because he isn't. You understand he has a disability and you're doing your best to accommodate that, and you want to support her. The ball is in her court to give you specifics!

Sounds like your SIL watches everything like a hawk to find reasons to be offended, so she’ll find them. I’ve experienced this in my own family. It’s exhausting. I feel for you.

If Ben goes to respite to give them a break, she’s being slightly unreasonable in policing your interactions with him.

I think if you want visits to be less stressful then you need more boundaries around them.

Your SIL needs to understand that Ben has certain needs, but so do you (i.e. not having belongings destroyed when he visits) - and it's reasonable for you to ask for advance warning so you can put things away, prepare for their visit, and make the entire thing less stressful for you all.

I would hate to have visits like this unannounced - you're not actually equipped to deal with his needs if you get no warning, and that is what's causing the stress.

Honestly OP you sound lovely and like you really know him.

I would just reply and say I’m so sorry you feel that way, we love Ben and enjoy your visits, but I’m pleased you brought it up as it is bothering you. Please let me know where I can improve.

edit to say do also reply to specifics like the chewing kids things to say if you had more notice you’d be able to ensure more stuff was hidden etc. its ok to have boundaries in your own home and work family!

I think this is the difference between “integration” and “inclusion”.

I say “Integration” because the situation looks like you tolerate Ben being there. In this case you’d really rather he wasn’t but if he is you accept his presence and make some adjustments like putting away things he might chew to keep them from being ruined. You endure his sensory seeking, in that he plays with your speakers and listens to your radiators and while it irritates you, you just wish he wouldn’t and suck it up. These adjustments are made primarily to make Bens impact on your life as minimal as possible.

If you wanted to adopt a more inclusive approach (which is I think what his mum is asking for) you would need to move from just tolerating him being there to actively wanting him there and reaching over his disability to help him join in.

Suggest to SIL that he makes sure he has his own things to chew on? Destroying your kids’ stuff shouldn’t be allowed. SIL should be taking things that aren’t his off him.

But does the OP have to be fully inclusive at the drop of a hat, at expense of her own kids wellbeing? I think this situation will create resentment between the cousin’s long term, and realistically the cousins may well end up having some care responsibility in future when all adults are gone.

Sounds like he’s chewing some Lego? That’s hardly a cause for children to be really distressed? Just remove the Lego when he arrives. Children can be very accommodating and understanding if you explain things to them.

Have you thought of having things that he can chew on when he's there? You can buy these things that are specially meant for it

You sound lovely and very realistic.

SIL is very aware of Bens behaviour preventing a challenge

Hence he's is respite for significant periods.

The truth is likely she struggles with him alone and it's her who needs your support. Ben sounds like he's quite happy at your house.

Your children shouldn't have their toys chewed. There is obviously a need to understand his disability but that doesn't trump someone else's right not to have their stuff ruined.

I work in send. I'm in charge of pastoral and behaviour. I lock my desk stuff away when I have certain pupils coming to me for some interventions because there is a change my work and pens etc will end up trashed, strewn across the room, ripped up etc. I don't blame the children for their behaviour - my job to is work out how to get to right for them - but I also don't want my stuff broken as it has an affect on me. It's called human emotion.

Is there somewhere Ben really likes to visit? Perhaps you take the initiative to arrange a day out there. Ask her how you can support Ben but also her to get the most enjoyment from the day.

Many of the families with children with similar presentation to Ben have adapted their homes to be safe - including some with TVs high on on walls behind Perspex!

They understand others homes aren't geared up for their child's safety but this reality and the reality is they are isolated.

But the other reality is someone cannot have taps turned on full on their homes constantly and the damage that causes.
They can't have their childrens toys ruined because of the expenses and emotional cost to their child.
You can't have music blaring all the time because of neighbours.
You need to lock pets away.

I don't think it's that SIL doesn't understand what's happening - I think it's probably the truth is extremely hard for her to accept - as it would be for any of us.

I like the "Ben box" idea - ask your SiL for suggestions of what to put in it. Also put in one or two things in that are generally useful or interesting like chew toys. Because you never know your luck - kids sometimes embarrass their parents by rejecting a toy (or food) in Mum's house and loving it when they bump into it elsewhere. So the box should "come from" you, or be something he "finds", rather than something his Mum gives him. Though it sounds as if the speakers have more appeal to him than anything you could put in a box! Maybe one of those electronics kits would work, depending on his abilities someone does it with/for him?

Sounds like Ben is an only child and your SiL doesn't have to balance the needs of other children against Ben's? But you do. . Dropping in on you with 15 minutes notice and expecting you to be nothing but prepared, warm and accepting is not very realistic. It might be worth pointing out to your SiL that she will want you DCs to have a relationship with Ben as well and consider positive ways to do that. He can't just be the kid who comes round and they have to hurriedly stop what they're doing and lock their toys away

You do sound like a very caring auntie and good on you for trying to make it work for everyone.

I feel a little sorry for you all really, you sound lovely and this isn’t easy on anyone. SIL is probably quite burnt out with caring for Ben.

Could it be arranged for SIL to see you without Ben being present? Perhaps at a coffee shop. Could you buy some flat whites and nice cake, and ask how you can support them during their visits. What positive things could be provided that would help Ben to feel welcome?

I think you are doing a good job under difficult circumstances.

Apologise for the stuff you can try to control, like the face pulling. I am another one whose face gives me away!!

Tell her you do genuinely care for him, and want him to feel welcome. One thing that would really help would be more than 15 mins notice of arrival. This would give you time to ensure everything is in place to make his visit comfortable.

If Ben was visiting me I think I would make the visit about him. I know that might sound weird, but I am guessing that they are not visiting you every single week, but that the visits are occasional. If that is the case then if Ben was visiting I would make sure that my house was "Ben-proofed" and then I would centre the visit around him. So I would perhaps get the kids to join in when he does his "music" stuff, I might make a game of it. I would be honest with SIL and say that I wasn't sure how to accommodate him and ask what I could do to make his visit more comfortable. And then I would do it. It will only put you out for one visit. If the visits are more frequent then I think I would try to cut back on them because it could be exhausting.

I talk like this as someone who used to care for a parent with Alzheimer's. I noticed that people who accept the disease just have a much better time (i.e. don't get too flustered about all the repetitive questions or get alarmed at the hallucinations, the fact that the sufferer may be living in the past thinking they are still young with no idea that they have become elderly) and the sufferer has a better time too. In my case my parent's symptoms became far more manageable. It still took a toll on me, though, so make sure the visits are not too frequent.

Good luck!

Apologies! I haven't rtft so my last post may not be at all relevant.

I don’t think it helps matters at all that you’re given 10-15 minutes notice of their arrival TBF. Maybe start by addressing that?

Yes I think this op.

I do understand it must be hard. I wouldn’t be remotely as tolerant as you sound - although I would want to be.

That said, it must also be very draining for his mum if his needs are high. She will get negative reactions if he destroys other children’s toys and she must feel a pang of protectiveness every time she knows someone is feeling negatively about him. All mums do, but for her it will be heightened.

Since she has mentioned you not taking the toy off him yourself, I would use that to base your response and say you are sorry, but you had ( mistakenly) thought she might prefer you to go through her, but that you have taken it on board and will now ask him directly. Then reiterate how you care about Ben and want them to feel comfortable at your house.

Truthfully op you being more tolerant than many people would be. Just approach her comments with kindness, which is as much as you can do.

Is anyone else concerned that chewing Lego and similar objects is a choking concern? That would unnerve me.