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
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.
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 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.
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 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.
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).
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.
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.
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.
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.
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.
Leave it for 2 weeks then say you'll have to finish at the end of term?
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.
Then for those reasons I think they need to find other child minders for after school. As your ds get older it will probably become much more difficult to take them out. These early years learning what is expected are vital for your future freedom. Dh is tired. I suspect you have taken on more than you should.
zzzzz Exactly. We're expected to step up (and we would, of course) but she's not.
A negative impact? Well, yes. It means that DH has to make a separate pick up at school run (I have to go to one school for DS2, while DH has to go to the other for DGS), which he has to walk(as he doesn't drive - and we only have one car), even though he has COPD and it makes him tired and wheezy. No choice as they get out the same time. DGS also has some behavioural issues (not SNs - but he picks on/winds up DS3 constantly and takes advantage of/tries to get DS2 in trouble constantly - encourages him to do things that are either not allowed or not safe), so we have to monitor him very closely with our two. It can be stressful, but it's family - we thought we were helping so they could pay rent and essentials, not luxuries! And it severely limits me, as I literally cannot leave the house with all 3 of them safely. With 2 of them, yes, but not all 3.
Lol zzzzz sibling melt away, you have coined a new phrase for me. Mine reappeared for 3 months while our dad was dying in hospital and now back to the occasional how's you email, followed by silence when I reply til the next how's you email.
But the stark fact is you would step up, if DGS was left parent less, and she won't reciprocate. Awful way to find out, and not very palatable, but as you say you will have to make other plans.
The babysitting is a different issue.does it negatively impact your other children or Dh?
Yes, I see the different points raised.
DD is 26, a full 20 years older than DS2, and she has a child that is 6 months older than DS2 (they are in the same year in school, although DS2 goes to SS). She lived with us until her DS was 4, then moved into her own place (very close by). We literally put drained our finances to help support her and her DS for those years, providing full time childcare for her (again free) while she was in university.
If she had brought it up and said "look, I've been thinking about our previous agreement..." then I would understand. But she didn't. WE brought it up as we were just going through info to make sure wills were current. She hadn't mentioned it at all.
The problem with the childcare is that DH is now angry that she is taking the piss a bit. He was already annoyed because she and her DP were saying they were broke because of childcare costs, so we stepped in to help out, and now they're flashing money around all over the place while still claiming poverty. Her DP's family is quite wealthy, and I imagine some of the money comes from there. While I enjoy seeing DGS, it's a bit irritating to feel like we're providing free childcare so they can spend money on gadgets and luxuries, rather than barely getting by as they told us.
I tried to explain to DH that these are two separate issues, but his thinking is why are we going out of our way to help her when she is not willing to help with something so important?
Obviously as she is not willing, we will make other arrangements, it will just be difficult, that's all. I wouldn't have them with her if she resents it. I suppose I find it a bit ironic that we're still expected to take over care of DGS if something happens to DD and her DP.
I understand what is being said about not wanting to ask siblings to help, but I disagree.
I personally do not want my children to grow up to feel the kind of freedom that involves turning their back on their own brother or sister so they can live some carefree existence. I believe it is everyone's "job" to look after those less able than themselves. I think looking after your own is the start of that.
It's really difficult Triggles and it naturally makes you feel sad, as well as giving you a problem to sort out, which you previously thought was taken care of. I'm not sure that stopping providing childcare for your DGC is going to help the situation though - it is not suddenly going to make your DD want to care for her brother, and if it did, you now know that she would be doing it grudgingly, so not an ideal position to be in.
Our eldest child (DD) is severely disabled, and when we made the decision to have another child, it was done on the basis that we would never expect subsequent siblings to look after their sister. As it turned out DS has HF ASD anyway, so will have enough problems looking after himself!.
When we made our will, we set up a Discretionary Trust and the letter of wishes appointed the 3 Trustees to make decisions about where DD (and DS if necessary) would be cared for in the event of our early demise. The trustees are my DB, DH's DB and a trusted friend. We would never expect any of them to care for DD themselves, but would trust them to ensure a suitable placement was found for DD.
I knew a lovely lady who had a son with the same condition as my DD has - although he was slightly more able than DD. Her husband died very suddenly and left her to care for her DS on her own. She had 2 daughters, who helped her enormously, but she always expected them to get on with there own lives. After her DH died, and her DS was in his 20's she fought to get him a placement at a local care facility (sort of sheltered housing). It took her 3 years to find and get the place. Shortly after her DS moved in, she was diagnosed with terminal cancer and died within months. Moving her son out of her house and settling him somewhere else when she did was the best decision she made. Her DDs live nearby and are involved in their brother's life, but are ultimately able to live their own lives - just as they would have been able to do if their DB had not been disabled.
I know your situation is slighly different as your DS is still young, but I think most of us on here just live in hope that the unfortunate circumstance which would leave our DCs orphaned will never happen. But none of us will be around forever, and I honestly believe that it is unfair to expect siblings to devote their lives to caring for a disabled family member - unless they really want to. And I understand how much that 'not wanting to' must hurt, especially on Mother's Day - but I think it is just something you will have to accept. FWIW, I think the excuse about the bedroom sharing is just a feeble excuse to avoid saying how she really feels.
I'm sorry if you are feeling sad and hurt, but please try not to make things worse with the childcare, no matter how bitter you are feeling.
Take care of yourself.
When I look at the close scrutiny done for friends who have adopted, I know we'd never have been approved as a match to take on our own dc . And they'd have been right: we barely cope now, the additional trauma of a recent family breakdown would make it almost impossible parent them all adequately.
The only way anyone could possibly manage would be with huge support, and that would never be forthcoming without a formal process contrasting the support with the costs of the council taking the dc on.
And that's considering ds1's needs are 'below the current threshold for our services', and dd and ds2 don't (yet?) have any official SN.
But this makes me feel really afraid. My DB is on our list, as is DSIL. We used to fear a falling out over which side managed to get custody but now it's just too hard a task for anyone to volunteer for. Think the dc would need to be split up, as a minimum.
Hi I think it's wise to plan sensibly and that includes the scenario where she isn't responsible. In reality I think it would be different and she would be desperate to keep everyone together.
I don't know how to put this without sounding mean. I have 4 dcs, and am older dd, and it is my greatest wish that she never feels responsible for them - I want her to go off and fly. One is disabled, and I worry about the future, but she doesn't figure in my what ifs.
At least she is honest, and you can plan something concrete. I know its patchy. My aunt died young and left a disabled adult son, and he is well placed and cared for (not by his sister).
Please don't be offended. The sn board is really valuable as a supportive resort, and that's my intention in posting.
And tbh, if she has an arsey DP, it might be better if the arrangements had ongoing formal oversight and support
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