Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

Have to make new "what if" plans

(38 Posts)
Trigglesx Sun 10-Mar-13 11:39:52

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. angry 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 Sun 10-Mar-13 11:46:11

sad

God the what to do after you die is awful isn't it?

I feel totally incapable of dealing with it really.

If she won't, she won't, so it will have to be faced.

Nothing but a shoulder to rant on I'm afraid as I too have no suitable relatives. sad

Trigglesx Sun 10-Mar-13 11:49:45

zzzzz oh I know, obviously can't force her. And wouldn't want her to do so if she resents them. But it just aggravates me - we would take in DGS in a heartbeat if something happened to her and her DP, regardless of the problems it might raise. Regardless of the inconvenience and expense.

Not sure what to do regarding the childcare. This is going to cause huge resentment, I can tell.

lougle Sun 10-Mar-13 11:51:00

Triggles, I'm sorry you've had all this on Mothers' Day. It's not easy. I try not to think of what might happen if I die <helpful>.

LimboLil Sun 10-Mar-13 11:57:21

It's scary isn't it. I have come to the conclusion I will simply have to live til 100. I haven't asked any of my siblings but seeing as they are noticeable by their absence since the first mention that he might have autism, I am not hopeful.

zzzzz Sun 10-Mar-13 12:06:36

Oh yes the "sibling melt away" would be funny if it wasn't so sad.

Plan here.....errr live forever. <stupid>

BeeMom Sun 10-Mar-13 12:14:07

The only positive I can see here (and I had to look very hard - with a map and a telescope) is that if, heaven forbid, something happened to you and DH, and she had never voiced this piece of information, you would have no say in the care of your sons - and they could end up God knows where.

FWIW - I am planning on living forever - for us, it is the only way.

Trigglesx Sun 10-Mar-13 12:14:42

Yes, unfortunately. "live forever" is the plan here as well for the moment. And it will cost money to change the will as well, once a new plan is in place, Until then, it still says that in the will. grrrrrr

PolterGoose Argentina Sun 10-Mar-13 12:27:56

I can't even begin to think of this type of planning. We have no-one sad

MareeyaDolores Sun 10-Mar-13 12:32:59

She may have spent the run up to Mother's Day reflecting on the challenges of mothering even one dc, and realising how much she relies on you to help with her dd. The penny has probably finally dropped about just how much you do, and how hard life has to get before you actually complain. And be feeling inadequate, scared and sad that she could never start to replicate that, so has (temporarily?) decided she'd better not even try.

This may be the first time she's properly processed that if she takes on her brothers, it would mean you're gone, and she really would be going it alone. And it's come out in a teenage sulk about bedrooms and fairness, but that's not the actual issue <hopeful>

Trigglesx Sun 10-Mar-13 12:33:26

Sorry, I just feel as if the rug was pulled out from under us. A couple years ago, when we were putting together our wills, she was perfectly happy with the idea. I suspect now that she has DP living with her and they have future plans, this is just not something they're prepared to do. Although I've noticed they're happy for us to provide free childcare for them. hmm If she had a change of feeling about it, she should have told us. She only said something because we asked.

I suspect she'd be happy to have DS3, but is not prepared to take on DS2. And I should have expected it as he got older (he's 6yo) as people always look differently when they're not the cute little ones. Less tolerant of children with SNs as those children get older.

Trigglesx Sun 10-Mar-13 12:35:41

MareeyaDolores If she had said that, I'd understand. Be annoyed, but understand. She literally said that it wouldn't be fair to her DS that he would have to share a room with DS3 while DS2 had his own room, and as they (DS2 and DS3) got older, she might not be able to take care of them - so apparently only when they're little and cute and cuddly. sigh... like puppies..... hmm

MareeyaDolores Sun 10-Mar-13 12:40:40

Sometimes SN dc get most support as 'children in care' who are then 'placed' with gran/ sibling/ auntie/ cousin via a guardianship or within-family foster arrangements. An allocated social worker, the right to support till age 25, housing (or adult placement) when they leave home, more chance of residential schooling if needed. For your dd it would most likely mean more respite, perhaps some financial support, reassurance that someone else shares the responsibility.

MareeyaDolores Sun 10-Mar-13 12:42:23

And tbh, if she has an arsey DP, it might be better if the arrangements had ongoing formal oversight and support

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.

LimboLil Sun 10-Mar-13 12:48:10

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.

MareeyaDolores Sun 10-Mar-13 12:48:53

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 hmm 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.

MareeyaDolores Sun 10-Mar-13 13:18:19

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 grin. 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.

bigbluebus Sun 10-Mar-13 13:54:54

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.

zzzzz Sun 10-Mar-13 14:47:57

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.

Trigglesx Sun 10-Mar-13 15:21:25

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. hmm

zzzzz Sun 10-Mar-13 15:28:26

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?

LimboLil Sun 10-Mar-13 15:38:03

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.

Trigglesx Sun 10-Mar-13 15:39:09

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.

zzzzz Sun 10-Mar-13 15:43:13

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.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now