Nephew has delays, sister angry at me

[aus5]

My nephew has just started having his evaluations done, no real diagnoses yet other than "delayed" (language, emotional, social etc)

He is obviously different - to me and his daycare providers - but not to his parents.

Daycare insisted he be evaluated and it's becoming obvious to Sis and BIL now, that there is actually a problem,

not because of DN (is that the right abrev? Dear Nephew) but because so many people are telling them that he's different.

It is obviously devastating them, they are visibly upset when I see them, they are grieving and I'd appreciate help from some BTDT parents about what to do for them.

What was the grieving process like for you? Is there anything I can say that will make this easier?

It's complicated by a few issues

  *******I have been asked to remove this section*******

Sister is angry, BIL just seems so lost.

I want to help.

But I'm worried I might make it worse. She's snapping at my children and trying to tell me things are wrong with them (accused my son of breaking DN's toys, stealing and lying; DN broke the toy, she will not hear it). Things are getting rough between us when she needs me the most.

I try to tell her it's not that bad, whatever it is it's not terminal, That's probably wrong, right? since she's grieving. (But honestly, it doesn't seem that bad)

Her friends are childless and not very supportive

what can I do to help given that she's absolutely devastated but my kids are fine.

Were any of you angry at your friends/family for having easy, typical children? Did you ever get over it?

wow, that's long, sorry!

Edited by aus5 - 1/28/12 at 1:37am

[ErinYay]

Back off.

The kid's been evaluated. What else do you want from them?

[aus5]

I don't find that helpful at all.

He's being evaluated, he's my nephew, I love him.

She does want to talk about it but she has practically no support and responds to my "help" with anger, she wants help and I'm doing it wrong

[aus5]

really, one of your whole sets of relatives are going through a hard time and you just "back off"? Just stop speaking to them?

[ErinYay]

Originally Posted by aus5 

I don't find that helpful at all.

He's being evaluated, he's my nephew, I love him.

She does want to talk about it but she has practically no support and responds to my "help" with anger, she wants help and I'm doing it wrong

And his parents love him too. 

They're doing what they need to for him. Based on this response and your OP, you seem to want them to care about *your* feelings. Too bad. It's not about you in any way. If they get half of the message you're sending with these two posts, I'm not surprised that they don't really care how you feel. If someone has little support and doesn't particularly want your support, that probably means that your support is worse than no support at all.

Re-read your OP- it's all about *you* and how *you* feel about your sister's parenting, and not about your nephew

Sorry if this seems harsh, but you just. Don't. Know. What it's like to be a special needs parent. You're entitled to your emotions, but leave your sister alone for a while about this. Your emotions, thoughts, and feelings should be kept well away from her at this point. She needs to process everything going on with her child at her own speed, on her own terms. You simply don't matter right now, and that's how it should be. She has enough on her plate without dealing with your issues at this moment in time.

[aus5]

Originally Posted by ErinYay 

And his parents love him too. 

They're doing what they need to for him. Based on this response and your OP, you seem to want them to care about *your* feelings. Too bad. It's not about you in any way. If they get half of the message you're sending with these two posts, I'm not surprised that they don't really care how you feel. If someone has little support and doesn't particularly want your support, that probably means that your support is worse than no support at all.

Re-read your OP- it's all about *you* and how *you* feel about your sister's parenting, and not about your nephew

Sorry if this seems harsh, but you just. Don't. Know. What it's like to be a special needs parent. You're entitled to your emotions, but leave your sister alone for a while about this. Your emotions, thoughts, and feelings should be kept well away from her at this point. She needs to process everything going on with her child at her own speed, on her own terms. You simply don't matter right now, and that's how it should be. She has enough on her plate without dealing with your issues at this moment in time.

I did not say they do not love him!

I am keeping this to myself, I have not said a word to her about how I am feeling,

Yes this post is about me, so I can work though what I need to do

That's why I am here. Asking people who have already processed this, about this stage in the grieving process. So I can modify what I'm doing to help. Anger is certainly normal.

I am trying to explain that she is angry at me. I would like to know why and what I can do to help.

I do not expect her to deal with my emotions, I am trying to learn to deal with hers. and do whatever it is they need. The OP was not meant to be about her parenting but about how adversarial this has been from the beginning and to explain that she is in a state in which her ego has been shattered which must be intensly painful

[Cyllya]

Actually, I think it would be a good idea to stop speaking with them for a while, since your sister is mean to your children. Or at least keep your children away from her. I mean, it's a bummer that you can't help your sister or your nephew, but your responsiblity to your children is more important than your responsibility to your sister or nephew, you know?

Other than that, I think a good tactic for "supporting" people, regardless of their problem, is

1) Listen to them talk about their problem (if they want to talk about it)

2) Don't give advice

3) Don't point out the bright sides (depending on the person)

3) If they ask for specific help, give it to them if possible

4) If they don't ask, offer help along the lines of, "Let me know if there's anything I can do to help."

Quote:

They're doing what they need to for him. Based on this response and your OP, you seem to want them to care about *your* feelings. Too bad. It's not about you in any way. If they get half of the message you're sending with these two posts, I'm not surprised that they don't really care how you feel. If someone has little support and doesn't particularly want your support, that probably means that your support is worse than no support at all.

Re-read your OP- it's all about *you* and how *you* feel about your sister's parenting, and not about your nephew

You're reading a bunch of nonsensical things into her post and then attacking her for it. Go back and reread the message you told her to reread, and you'll find there's no reason to accuse her of the things you're accusing her of. Her post is all "my sister this, my sister that" because her sister is the one she's trying to help. Of course she just-doesn't-know what it's like to have an SN child; that's why she's asking for insight from a message board filled with parents of SN children! If you think her word choice or way of looking at the situation is wrong or offensive or anything, how about some constructive criticism?

[aus5]

You're reading a bunch of nonsensical things into her post and then attacking her for it. Go back and reread the message you told her to reread, and you'll find there's no reason to accuse her of the things you're accusing her of. Her post is all "my sister this, my sister that" because her sister is the one she's trying to help. Of course she just-doesn't-know what it's like to have an SN child; that's why she's asking for insight from a message board filled with parents of SN children! If you think her word choice or way of looking at the situation is wrong or offensive or anything, how about some constructive criticism?

I'm so glad you said this! thank you!

I couldn't see it either. I was starting to worry I was just upsetting eveyone

And for the record: I know I'm getting it wrong, I'm trying to learn how to do it right, telling me I'm so far gone that I can't even learn is insulting

[Adaline'sMama]

Stop trying to help. Just be there and be supportive for your sister. Right now she is probably scared and confused and angry and is having to learn how to deal with everything in a different light. The last thing she needs from you is for you to butt in, or have any sort of "I told you so" attitude. Maybe that isnt how you are acting towards her, but that's what your post says.

Also, I want to point out to you that not everyone who would make the decision to terminate if they knew their child would be diagnosed with downs syndrome is someone who "doesnt have SN in their plans." There are plenty of people that would make that decision that are capable of dealing with children who have SN. You didnt say what SN your DN has, but making a statement like that makes it sound like you think all SN are the same that that if someone chooses to terminate a pregnancy that could result in a child with downs syndrome, then they wont deal with ANY special needs. I know that this is a sensitive topic for a lot of people, and I have no idea what I would do if I were faced with that kind of information, but I know someone who said they would terminate a pregnancy if their anmio came back with downs syndrome and then went on to have a child on the spectrum and she got a lot of flack for it from her family. There were a lot of "serves her right, she was going to abort him if he'd had downs syndrome" type comments. Im not sure if you even ever said anything to your sister about anything like that, but if she feels that vibe from you, it could be the very reason she is so defensive. That, and the fact that you have been telling her that something is wrong with her kid before he was even a year old. It can put people on the defensive, even if you are right.

I would back off a little, maybe spend some time with her without the kids (sister lunch date?), ask if she needs you to watch kids while she goes out with her DH- that kind of stuff. She is obviously going through a lot and probably needs some help. There will likely come a time when she realizes that you were right all along and that she was mean to you because she was upset about it, but as for right now she is your sister and is in a stressful situation. , Im sure it isnt easy to deal with her right now, but try and remember that she needs your love, not your judgment.

[katelove]

I am not a parent of a special needs child but my guess would be that she is angry with you because you are a safe person to be angry with. She's not really angry with you, she's angry that her son has these issues and she's working through a process of grieving for the life she thought she and he were going to have and probably for the struggles he is going to face. It's a pretty normal response I think to feel you've "done all the right things" and it still "hasn't worked". She's probably also wondering why her and her son. These are all natural parts of the process of coming to terms.

If you're concerned about her lashing out at your children then would it be possible to see her on your own for a while? And then just what Cyllya said, listen, sympathise, try not to take anything personally. I'm sure you wouldn't but I would *definitely* not say or even hint that whatever he has is not so bad. She may come to that point herself and, if she does, you can agree and support that view but, at the moment, it is that bad. We have just realised that our toddler may have a colour vision defect. Very, very minor as problems go but all I can think about at the moment is what she will miss out on in life. No-one wants their child to have anything which will interfere with their ability to enjoy or experience life to the fullest extent or will cause them to struggle with things that everyone else takes for granted. Work on the assumption that this *is* catastrophic for her. She may not always feel that way but ,for now, that's how it is.

Have you read any of Elizabeth Kubler-Ross' work on grieving? This is an overview http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model#Stages of the stages people go through.

[aus5]

Originally Posted by Adaline'sMama 

Also, I want to point out to you that not everyone who would make the decision to terminate if they knew their child would be diagnosed with downs syndrome is someone who "doesnt have SN in their plans." There are plenty of people that would make that decision that are capable of dealing with children who have SN. You didnt say what SN your DN has, but making a statement like that makes it sound like you think all SN are the same that that if someone chooses to terminate a pregnancy that could result in a child with downs syndrome, then they wont deal with ANY special needs. I know that this is a sensitive topic for a lot of people, and I have no idea what I would do if I were faced with that kind of information, but I know someone who said they would terminate a pregnancy if their anmio came back with downs syndrome and then went on to have a child on the spectrum and she got a lot of flack for it from her family. There were a lot of "serves her right, she was going to abort him if he'd had downs syndrome" type comments.

this is very pertinent, thank you.

I think she may think I believe this, I definitely do not.

Or it is possible she feels like this herself

[AbbyGrant]

It sounds like you have a very complex relationship with your sister, and it's been contentious for awhile.  From your post, I'm surprised you both are speaking to each other, so I think it's great that you want to try to help.  

But at this point, I think the way you can help most is to back off a little bit.  Just listen and be supportive.  Don't offer unsolicited advice. Don't try to minimize your sister's or her husband's feelings by saying things like "it's not that bad." You can't fix this for them or make them feel better.  They just need to work their way through this.  And it's perfectly normal for parents, and in my experience especially fathers, to be in some sort of denial for awhile and not see things particularly objectively.  It's something that takes some time to come to terms with even when you have professionals telling you there is something up with your child. I know it took awhile for my husband. 

If you want to offer some practical help, maybe offer to watch their other kids so they can go out together some time.  I know my husband and I enjoyed some time alone when we were going through the evaluation process.  It was very a overwhelming time, and it was nice to sort of take mental break from it all.  

As far as the anger issue, it sounds like that has a lot to do with your relationship in general with your sister and not simply this issue.  I can see where she might be angry about some of what you've said, but it sounds like she's said her fair share of things too.  All I can say I guess is tread lightly when it comes to talking about her child.  

Edited by AbbyGrant - 1/26/12 at 7:42am

[Imakcerka]

I'm confused... is he actually SN?  Or is he just being evaluated?  How old is he?  

[cristeen]

Skipping right past the pp responses...

I personally didn't really have a grieving process.  But then I was the one that initiated the assessments because I suspected something was wrong.  My DH however is still dealing with his grieving phase, and we got a diagnosis back before Thanksgiving. 

Really, the best thing you can do is offer to listen if they need to talk.  That's what they need right now.  They don't need platitudes, and there's nothing you can fix.  Just be there to listen if need be.  I would avoid putting your kids in that situation again though, since that's not fair to them. 

The one thing that has really helped my DH is me reminding him that diagnosis or no diagnosis, he is still the same little boy he was, that the diagnosis doesn't change that.  It may change his perception of DS, but it doesn't change DS.  That has been the one thing that has seemed to help my DH move past the dx. 

However, if they've just started the assessment process, then they have a long road to go still.  I know our assessments took 4 mos from first phone call to dx, and that can be it's own sort of stress - the stress of not knowing. 

HTH

[RiverTam]

I think you do need to back off a little. This is a huge thing for her and since she feel competitive with you, she may not be able to accept help from you.  You may have to accept that, at least for now.  Tell you are there to talk if she needs someone to talk and then back away.  She needs space to deal with this.

That said, stuff that would have been helpful to me, if anyone in  my family would have done it:

Autism Speaks has a First 100 Days after the Diagnosis packet. It has helpful suggestions. Even if DN does not have an ASD, the suggestions are general enough that they would be helpful to your sister.

Offer some respite care. Offer to take the kids off her hands so her and her husband can spend some time together. They need to recharge their batteries so they can support this kid.

Take her out for coffee and pie or shopping or something fun. She needs to recharge her batteries. Don't talk about DN during this, unless she wants to do so.

If DN ends up having a big therapy schedule, offer to watch her other kids while she drives him to therapy.

[faithsstuff]

We are going through evals right now with ds and yes I'm angry with my friends who have 'normal' children.  Yes, I know it's not helpful or even rational, but I am.  I think that this process can leave you very defensive of your parenting as well.  I think you're prob a safe person for her to redirect anger towards, I have to stop myself from doing the same thing to ds.  This is about our children, but there isn't a clear line where the child ends and we begin.  My suggestion would be not to 'help' her unless your offering to babysit, bring her lunch after an appt, something really for her.  Don't be dismissive, or try to minimize her fears, hear her.  You don't have to agree, it won't change what's happening in her life weather or not you agree, but it may take away a safe place.

that being said, draw your boundries where you need to.  Protect your children and yourself.  Think about what you can offer, and know in advance what you can't.  

Good luck through this, I hope you guys can come to some peace between yourselves.

[HarperRose]

I think you've gotten a lot of good advice from the others here. I'd also suggest backing off simply because she's not receptive and she's not being nice to your kids.

Also, I didn't read ANYTHING in your OP that would indicate an attitude of how it's all about you and you told her so type of stuff. You seem to be a very caring aunt who wants to help her nephew. 

At some point, she will come around (maybe??) and you can just be there for her. Let her know you'll listen, let her know you'll do everything in your power to be supportive, but don't try to help. She doesn't want that right now.

Good luck.

[Piglet68]

ErinYay may have come across a little blunt. She may even have sounded rude. It's interesting that this is a Special Needs board and yet nobody has considered that perhaps ErinYay may have ASD or some other issue (I have no idea if this is true but it's a nicer assumption than "hey, who is this nasty woman being so rude to me?)? My kids tend to be brutally honest, to the point, without worrying about all the niceties, disclaimers, and lengthy explanations that many of us (me too) tend to use in posts. I think it would be a good lesson in tolerance for all of us to consider not HOW the message was sent, but what the message is. And I have to say, I agree with her. 

OP, obviously you love your DN and are concerned. With respect to your first post, concern #1 is crossed off the list because he's being evaluated.

Issues number 2, 3, and 4 are her issues and her "baggage", not yours. There is nothing you can do about it. What you should be focussing on is your own boundaries and where you'd like to draw the line for yourself in terms of how much of her baggage you can stand being dumped on you at any particular time (and ditto for her taking it out on your kids, not cool).

You are a safe place for your sister to vent, as someone else pointed out, which speaks to the closeness of your relationship. I know the urge is often to "help" by addressing the issues the other person brings up, but in my training as a LLL leader I've learned that so often people just need to be HEARD, they don't want to be told what they should do. Unless your sister specifically asks for your opinion, the best you can do is just offer her sympathy and a safe place to "get it off her chest". Set boundaries if need be so you don't lose your sanity, but really there is nothing you can "do" except listen to her. 

[Linda on the move]

Going through the eval process and coming to terms with my DD's sn were a VERY difficult time for me and lots of my relationships ended because people had no idea how to help and support me, or when to give me my space, or it was just to painful to watch their children catch on to things so easily, and constantly wonder if I was being judged for my parenting choices. (some of my extended family members have tried to tell me that my DDs issues (autism) were caused by AP, GD, and homeschooling, so the feeling judged part wasn't just in my head).

I cannot easily explain how I completely lost the ability to be friends with any one who had a child the same age as my DD. For years. I just couldn't do it. I just couldn't watch. Or see. Or hear. I couldn't.  And because I got so much judgment from my family, I felt it everywhere, even in places that with hindsight I really doubt I was being judged.

Part of my advice is to see your sister without YOUR kids there.

Next, what most people really need while going through a difficult time is to feel heard and understood. There is a style of communication called "non-violent communication" and I suggest you buy books (yes, plural) and read and study them, and then practice the ideas, and then read the book again and try more.

It's about learning to talk to people in ways that communicate that you really hear them. Telling some one that something "isn't that bad" isn't helpful. It just makes it clear that you have no idea what is going on or how they feel. Right now, you are telling her that her feelings are not appropriate for what is happening. But how she feels is just how she feels.

And I was devastated in the same situation.

[Emmeline II]

Quote:

Originally Posted by faithsstuff 

We are going through evals right now with ds and yes I'm angry with my friends who have 'normal' children.  Yes, I know it's not helpful or even rational, but I am.  I think that this process can leave you very defensive of your parenting as well.  I think you're prob a safe person for her to redirect anger towards, I have to stop myself from doing the same thing to ds.  This is about our children, but there isn't a clear line where the child ends and we begin.  My suggestion would be not to 'help' her unless your offering to babysit, bring her lunch after an appt, something really for her.  Don't be dismissive, or try to minimize her fears, hear her.  You don't have to agree, it won't change what's happening in her life weather or not you agree, but it may take away a safe place.

that being said, draw your boundries where you need to.  Protect your children and yourself.  Think about what you can offer, and know in advance what you can't.  

Good luck through this, I hope you guys can come to some peace between yourselves.

There really is some good advice in this thread.