Here some suggested organisations that offer expert advice on SN.
Have to make new "what if" plans(38 Posts)
Adult DD has told me today that she doesn't think she'll be able to care for the boys if something unexpected happened to me and DH. Utterly charming. The conversation was brought up because we were just touching base with her on a few things, as we were discussing wills, etc.
She said she'd make sure they were "taken care of" but that it wasn't really fair on her child to have to share with DS3 while DS2 had his own room (has to because of his SNs). She said "how am I supposed to explain that?" So I pointed out if you raise your child with compassion and understanding of DS2's SNs, DGS wouldn't begrudge DS2 having his own room as there are so many other things that DGS can do that DS2 simply can't. The way she flippantly said "taken care of" with a wave of her hand, it was like she was discussing PETS FFS. And of course, that's only if they're young - she said when they get a bit older, it would be more problematic. And when I stated that DS2 may not be able to ever live on his own, she just made no comment.
So now we're going to have to make other arrangements. I am so angry. I just feel it's incredibly selfish. These are her BROTHERS!! I admit that I was concerned about this - she's been acting much like DS2 is a pain lately, much to my irritation. DH's family members are all utterly unsuitable - due to age or irresponsibility. So heaven only knows what we'll arrange.
And of course, we're providing (free) childcare for her two days a week (afterschool during term time, full days during breaks) for her (DGS), and DH is adamant that we stop doing this now. Because I need more pressure, right? And the DLA renewal pack showed up the other day.
Yes, Happy Mother's Day. Uh huh. sigh
zzzzz I agree with you re the childcare. However, while we had been discussing it privately (myself and DH), if we now say this to her, it will look retaliatory, won't it? Although to be fair, her discussion today IS what pushed it over the edge as far as DH is concerned.
Leave it for 2 weeks then say you'll have to finish at the end of term?
From your further posts Triggles there are clearly a number of other issues at play here, more than just your DDs change of heart over taking care if her brother in tragic circumstances.
It does sound like she is taking advantage of your good nature, and that her priorities are not in the right order! It may be that she needed your help to get on her feet a few years ago, but her circumstances seem to have changed for the better and she needs to acknowledge that, notwithstanding the situation regarding who would care for your DS if the worst came to the worst.
zzzzz yes, something like that. Obviously she has to have notice to find someone else.
bigbluebus yes, number of issues. I agree. I do think her priorities need a rethink, but she is obviously going to have to come to that conclusion on her own. As a 20-something, she feels she knows everything at the moment.
Karma,as they say, is a bitch.
This has been one relief for me now that dickhead has left. It's very unlikely that we would both be killed in a car accident now, for instance. If anything happened to me, he would have them and vice versa. And if anything happened to one of us, the other would have to look at alternative arrangements at that point. I haven't thought about when they are adults. I have never felt comfortable with asking DS1 or DS3 to have DS2 to live with either one of them when I'm gone. I think that while they should look out for him, it's not their responsibility to look after him, IYSWIM. They have their own lives to live.
It's a tough one, as the sibling of an SN brother and the mum of an SN child I can see both points of view but I do err towards feeling your DD isn't being entirely selfish.
A friend of mine has a sister with SN who is in her 50's and still lives with her parents who are in their 80's. Parents refuse to discuss what will happen to their disabled DD when they are no longer around, they just assume that either my friend or her other sister will take over and have their sister to live with them.
This is neither practical or possible for a number of reasons. My friend's house does not lend itself to a disabled person living in it (we just about manage to get in with our DD but are confined to the ground floor - bathroom is upstairs). My friend's parents live 40 miles away, so moving her sister in with her would take her sister away from her friends and the place she has lived in all her life. Same applies to other sister who lives even further away. Both friend and other sister work full time.
My friend worries about what will happen in years to come as her parents refuse to even discuss it.
If she absolutely cannot or will not, we understand that. We'd be a bit disappointed, but that's life, isn't it. What we are not happy with mostly is that she initially agreed to it, but then changed her mind (according to her she thought this quite awhile ago) and didn't bother to TELL us! When we first discussed it a few years ago, we told her there was no pressure, that we would understand if she felt she couldn't handle it. And we told her not to agree to it if she wasn't 100% okay with it. She assured us it was fine. She KNOWS how important it is that we have arrangements in place. If we hadn't asked her, would she have ever brought it up? Or waited until something happened, then dropped the bombshell that she wasn't willing.
Yes, I do think she is being a little selfish - as she fully expects us to take over care of DGS if something happens to her and her DP, regardless of what it would entail for us (and it would be a huge undertaking for us). However, we would do it, because he's family and would need us to be there for him. But while I can understand her not feeling she could cope - DS2 can be exhausting - I cannot understand not bothering to tell us she'd changed her mind, even though she KNEW how important it was that we have this planned. We explained this to her previously, so she does know it's important.
And yes, I imagine part of my ire is the dismissive way she waved her hand and said "well, if they're still young, we'll of course make sure they're taken care of." She would not clarify if she meant she would take them in or if she would have them placed somewhere, which truly made me uncomfortable (and quite angry, if I'm honest).
I think she has said quite clearly that she will not, and more over showed that she doesn't have the emotional maturity to do the job.
A major part of sn is planning and being honest about what you can and can't do. It is important to think of what is best for the child with sn all the time. By delaying telling ou that she is not going to do wha she agreed to do she has shown that she is not a suitable guardian. That doesn't mean she is dreadful, though I understand your sadness, it just means she isn't the right person for the job.
I gave nobody either. My only sibling has Aspergers and can't live independently himself.
So, as with most of us, my plan is to live forever. <<Deluded>>
Which is really daft given that I'm disabled myself. Uncontrolled Epilepsy leaving me at very high risk of SUDEP, arthritis, and early stage cervical cancer and I STILL can't find anyone suitable.
DS1 is a major problem as his dad won't even take him to his house any more because DS1's SM won't have him in the house.
But nobody suitable.
Sooooo, I just have to live forever.
I am lucky as DD would take them on in a flash. Not that she is able to support herself financially yet but she would have a roof over her head. When I brought the subject up she said she would rather live in a tent and eat beans than part with her brother or sisters bit dramatic but I understand what she means lol
My worry is IF she can handle ds on her own not the fact that she wont have him to look after.
So I guess I am on the "live forever train" too.
coff33pot That is basically how DD said she felt a few years ago - that she'd do whatever it took to make sure the boys were with her and okay. She just doesn't feel that way anymore, sadly.
I think part of it is that when we spoke to her about it before, she'd been living with us (and hence with the boys) and was very close to them. Now she's been living on her own with a fair bit of freedom and a very strict rule set that her DS follows, so she has a nice orderly life that I imagine she is loathe to lose to some chaos. I also have noticed lately that she has been quite short with DS2 on occasion recently and that she has been "comparing" him/his behaviour to that her of DS. I suspect when she sees DS2 having a meltdown, she is thinking tantrum based on a few passing comments.
I would say that, as zzzzz said, she has clearly demonstrated that she doesn't have the emotional maturity to handle DS2 anyway. We will be looking into other arrangements.
I worry because my eldest is possibly LEAST likely to live independently. My 10yo DS1 possibly will - but may need support to do so. DS2, again, unlikely until 30's, I reckon. DS3 - god knows, but he's the first one getting a place at SN Nursery, so not looking good.
I can see me having DD at home until 25+, ditto DS2, AND DS3, and DS1 living outside the home but needing my support to do so.
Dying is not an option.
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