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Nephew has delays, sister angry at me - Page 2

post #21 of 59

I just skimmed the responses.  The first one made me ragey, so I backed off.

 

My sister has 2 children - both with severe autism.

 

I knew something was off with her firstborn from a very early age.  People did suggest, gently, to my sister that something was off - but she would not listen.  It was not until he was well past the age when most kids start talking did she consider evaluation.

 

Her second son was diagnosed much quicker.

 

She has never been mean to my kids, but her DH did question whether my youngest might have autism when she was about 2.  It came out of the blue, she has no signs of it whatsoever…..I honestly think it was a "misery loves company" sort of thing.

 

While my sister has never been mean to my kids (she is not a mean person) she was had unrealistic expectations of them and of other neutotypical children.  Honestly, she expects a neurotypical 2 year old to be able to wait in line patiently "because they are neurotypical and you can explain things to them."  It is not an issue now, but it was one for years.

 

Another issue I had, and one you will probably deal with if your nephew has any sort of a serious issue, is a sort of "survivors guilt".  I can rarely vent  to my sister about issues my kids are having - because  - how dare I? My kids are neurotypical!   Then I feel guilty for even feeling resentful that I can't vent.

 

The special needs board at MDC has not been a safe place for me to vent (although there are times I could have used it). I love MDC (look at my post count!) and can talk in most forums about most things - but I cannot talk about how autism affects my extended family on this forum.  It is too much of a hot topic - and once again, who the heck am I to be complaining?   I have found real life friends and family to be better support.  

 

Serious diagnosis absolutely affects other family members.  I don't think we acknowledge it enough.  There is no support for it - because how dare you grieve or talk about the situation- your kids are fine!  

 

As per how to support someone…what my sister has seemed to need most over the years is babysitting.  She needs someone to watch her kids a bit so she can recharge her batteries.  We have also worked hard at including her in any family events/outings.  We used to include her children, but frankly, they are aggressive and destroy things, so that has fallen by the wayside.greensad.gif  We don't exclude them - but I don't think she wants to bring them out either, so the topic does not come up much.  She has not really be open to other kinds of support.  She does like to vent on the phone about issues (usually related to school or programs) and I let her.  I do not bring up my own stuff much - I am a listening ear.  It is a role I am ok with.  To be honest, I wish I had offered less advice in the early years - my heart was absolutely in the right place and my sister did seem so defeated- but I didn't pick up the cues that she really wasn't interested in hearing it.  I bet she felt bombarded by advice from everywhere, and it might have been nice if I were more sensitive and did not contribute to that.  I think I will call her and apologise.  

 

 

 

 

 

 

 

 

 

 


Edited by purslaine - 1/27/12 at 9:23am
post #22 of 59
Quote:
Originally Posted by ErinYay View Post



 

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.



The Op is new.  You have been harsh and perhaps scared her away (on a topic she clearly needs to discuss). How is that supportive?  

 

Parents of special needs children lose friends and family members all the time over their children.  Helping extended family members come to terms with and deal with issues surrounding SN family members might be a good thing.  I agree she should not burden her sister with her emotions, thoughts and feelings at this time - but bringing them up on a message board might help her process, might help her extended family as a whole, and should be welcomed.  


Edited by purslaine - 1/27/12 at 9:23am
post #23 of 59

Just coming out of lurking mode.  This is tricky for me due to being on both sides of the fence.  My niece through adoption (my husband's aunt died of breast cancer 4 years ago and left one grown and two school age children in need of care) was seen by the surviving family to be a behavioral problem due to her natural mother's "bad parenting".  This was at a point when my own son was having a lot of difficulty and no diagnoses, yet.  A lot of DH's side blamed my son's behavior on me.  I was really concerned about my niece, I didn't think her problems were on purpose, and I wanted SIL to get her tested.  Add the guilt I and my husband were feeling about not being able to have her more in our life (next province over, but all the nieces and nephews visit weeks at a time a few times a year) and I was a major wreck wanting her to get help.  My MIL and I had quite a rift for awhile about this (she's the official guardian even though my niece was living with SIL and not her).  It was hard on DH and I.  He was really worried about our niece, too, but he had a hard time talking to his Mom about it  All these years later, at 16, after a major anxiety episode my niece has an ASD diagnoses like my son.  I can really both how kathymuggle is feeling and how the sister with the SN child is feeling.

 

That being said, it doesn't change that the advice given by the SN parents (including ErinYay) on this board is right.  Really listening instead of telling and being aware of your boundaries as the extended family is the right thing to do.  Yes, it's hard to be extended family of an SN child.  Yes, extended family need support.  The fact remains that backing off on judgement and offering open ended support instead of trying to advise when not asked is what I needed as a parent, and what most parents of SN kids need.  And most people given time and support can come around.  The sister in the original post is getting her child evaluated, so at least the child's needs aren't ignored.  The OP will need to process some of her emotions about this with someone who is not her sister.  Her sister has too much on her plate for this.

 

I also agree with Piglet about giving some of the SN parents some slack when they post bluntly.  I took 7 years to come back to this board (had a different username in past, low posts but lots of lurking) from being absolutely overwhelmed when I read discussions where people took offense beyond the words stated.  I was kind of terrified I'd be that person to offend.  Just recently, we had someone get all upset because she wanted support and "pity" and the posters replying were too technical and she felt this meant the MDC special needs board had gone down hill.  Of course posters with kids on the spectrum are sometimes blunt or technical.  Even if they are totally NT themselves, they spend hours of their time with children who need them to be blunt.  Let's all just cut everybody some slack and deal with words and not inferences.  There's no verbals to go on when you're online anyway.

 

post #24 of 59

nm

 

 


Edited by purslaine - 1/27/12 at 9:38am
post #25 of 59
Quote:
Originally Posted by FarmerBeth View Post

 

 

That being said, it doesn't change that the advice given by the SN parents (including ErinYay) on this board is right.  Really listening instead of telling and being aware of your boundaries as the extended family is the right thing to do.  Yes, it's hard to be extended family of an SN child.  Yes, extended family need support.  The fact remains that backing off on judgement and offering open ended support instead of trying to advise when not asked is what I needed as a parent, and what most parents of SN kids need.  

 


Posters might be right  - but if the delivery of your opinion is harsh, no one is going to listen.  They will tune out and get (rightly - as they often did nothing wrong) defensive.  

 

Is the goal to be right or to help?

 

If your goal is just to get your opinion out - do it any way you want

 

If your goal is to actually help the Op, say what believe, but do it in a way that most posters will be receptive to. 

 

 

post #26 of 59

Yeah, I'm kind of a dick. I'm also the autistic mother of two very young children, the eldest of whom is very likely on the spectrum.

 

The extended family's feelings and entirely valid and important, but a board for support for the actual parents of SN kids isn't really, imo, the best or most appropriate place to deal with those feelings. Most of us have had more than our fair share of "I told you so"s and "you're imagining things" and "it's not so bad" and "so-and-so's kid has XYZ and he turned out just fine" and "I need to tell you how *I* feel about your child's issues" and, at least for me, my patience for this stuff is nil.

 

Everyone posted essentially the same thing- back off, take your time, give your sister space, etc. I just said it like a dick bc, you know. Poor social skills and personal frustration make for lousy bedfellows. I'm not perfect, but if I got the sense that there was any I-told-you-so, I imagine your sister gets that sense, too. It doesn't matter if you've never actually said anything like that, she'll still feel it. It's a very hard thing to deal with, realizing your child has atypical issues, and it's cliche but true- you cannot imagine what it's like until it's your kid.

 

I do apologize for my tone, but not for the message within.

 

And, really, it sucks, but if you have a loved one with an ASD, you better grow a thick skin. 

post #27 of 59

You've gotten some good advice here.  LIke the others, I suggest you back off, at least for a while.

 

There really isn't anything you can say at this point that will make this process easier for your sister and BIL.  It's something they have to work through in their own time. However there is a lot you can say that will make it harder.

 

My son got his offical diagnosis of autism a week after he turned 3, after a diagnostic process that lasted 5 months. (He's now 7.) My ILs (who all live nearby) were not supportive or did not know how to be supportive and made the whole situation a lot more difficult. 

 

I'm sure you realize now that it's not helpful to say that your DN's problems are not so bad becuase they are not terminal.  Developmental disorders are not life-threatening, but they can require complete changes to the family's lifestyle.  Activities and events that families with typical kids can do easier can become a struggle and be disheartening.  My SILs often do not understand this and make rude comments about why we do not attend certain events or we only stay briefly at some family celebrations.

 

As other have said, try to just be there for your sister as she goes through this process.  Listen a lot, say little.  Help out with everyday tasks if/when you can.  Don't take it personally if she does not want to be around you or your kids right now.

 

Once your DN has a diagnosis, explain this to your children if/when they are old enough to understand it. One of my SILs refuses to explain autism to her school-age kids because she says it is "too awful for them to know about".  It hurts me deeply to hear her say that.

post #28 of 59
Quote:
Originally Posted by ErinYay View Post

Yeah, I'm kind of a dick. I'm also the autistic mother of two very young children, the eldest of whom is very likely on the spectrum.

 

The extended family's feelings and entirely valid and important, but a board for support for the actual parents of SN kids isn't really, imo, the best or most appropriate place to deal with those feelings. Most of us have had more than our fair share of "I told you so"s and "you're imagining things" and "it's not so bad" and "so-and-so's kid has XYZ and he turned out just fine" and "I need to tell you how *I* feel about your child's issues" and, at least for me, my patience for this stuff is nil.

 

 


I am sorry for earlier.   I realise I got a little judging the judger.

 

There are so few places to go on the net for support for extended families.  Sometimes I wish we had a subforum here, or an ongoing thread for extended families, as I get parents and extended families have different needs (and parents probably do not want to hear us complain, even though sometimes we also have issues that need discussing).

 

kathy

 

 

 

 

 

post #29 of 59
Quote:
Originally Posted by kathymuggle View Post


I am sorry for earlier.   I realise I got a little judging the judger.

 

There are so few places to go on the net for support for extended families.  Sometimes I wish we had a subforum here, or an ongoing thread for extended families, as I get parents and extended families have different needs (and parents probably do not want to hear us complain, even though sometimes we also have issues that need discussing).

 

kathy

 

 

 

 

 


I appreciate that, but no worries. It's taken me nearly 32 years to get to this level of communication, and feedback can only help me communicate better.

 

And I think an extended family SN sub-board is a great idea.

 

 

post #30 of 59

I think that subforum idea is a good one, too. 

post #31 of 59
Quote:
Originally Posted by ErinYay View Post

The extended family's feelings and entirely valid and important, but a board for support for the actual parents of SN kids isn't really, imo, the best or most appropriate place to deal with those feelings. Most of us have had more than our fair share of "I told you so"s and "you're imagining things" and "it's not so bad" and "so-and-so's kid has XYZ and he turned out just fine" and "I need to tell you how *I* feel about your child's issues" and, at least for me, my patience for this stuff is nil.

 

Everyone posted essentially the same thing- back off, take your time, give your sister space, etc. .....

.....

And, really, it sucks, but if you have a loved one with an ASD, you better grow a thick skin. 


yea, the stuff posted on this thread has been VERY light compared to what most of us with a SN  child have put up with from relatives.

 

The "everybody needs to be uber nice to me because I don't have a clue and my skin is too thin for you to just tell me the things I don't know" thing just doesn't go over well here.  

 

This is a heavy board. People are dealing with major things. And if a parent of typically developing children can't handle hearing how they sound from those of us on the other side, then may be they should really look at themselves. Because they are most likely coming across the same way to the people IRL that they want to support -- who aren't going to just hit them between the eyes with it.

 

Some of this may be what they would say to you if they could formulate it into words.

post #32 of 59

nm - argumentative and repetitive.  I think this thread is a little triggering for me, so I will back off. 

 

I hope you found some useful advice, OP.

 


 

 

 

 

 

 

 

 


Edited by purslaine - 1/27/12 at 7:39pm
post #33 of 59
Thread Starter 

I'm still reading replies,

I'm just very confused by how this thread has veered.

 

I cannot see how it can be construed as my needing support for my feelings.

 

Really I was just after facts.

 

And when you say "back off", umm, from what?

I think I have told her a total of 3 times that he should be assessed, I dropped it immediately when it was clear she was not open to the conversation and waited months to bring it up again and only in context. I did kind of feel obligated to do so because I felt he needed immediate help

I don't get "back off"at all.

 

She brings it up, I say something, she explodes, I'm lost.

She clearly wants something from me, I had no idea what.

 

Somebody said acknowledge her feelings, BINGO, thank you! I am a 'fixer' type and apparently 'fixing it' wasn't what she needed.

 

Also, I'm quite certain that she isn't feeling bombarded by my feelings.

Sister is of the opinion that I do not posess emotions and has referred to me in the past as "The Robot".

She has also told me that I am "supposed to be there" in these types of situations

But what on earth does that mean?

post #34 of 59
Quote:
Originally Posted by aus5 View Post
She brings it up, I say something, she explodes, I'm lost.

She clearly wants something from me, I had no idea what.

 

Somebody said acknowledge her feelings, BINGO, thank you! I am a 'fixer' type and apparently 'fixing it' wasn't what she needed.

 

Also, I'm quite certain that she isn't feeling bombarded by my feelings.

Sister is of the opinion that I do not posess emotions and has referred to me in the past as "The Robot".

She has also told me that I am "supposed to be there" in these types of situations

But what on earth does that mean?


It got lost in the thread, but I recommended that you read up on non-violent communication. Here is a link to a really awesome book:

 

http://www.amazon.com/Nonviolent-Communication-Language-Marshall-Rosenberg/dp/1892005034/ref=sr_1_1?s=books&ie=UTF8&qid=1327750114&sr=1-1

 

This book can teach you what it means to "be there."

 

Part of what is happening between you and your sister right now is that she does need something from you, but not what you are giving her. She's angry that you are failing to give her what she needs, even though she cannot clearly articulate what she needs (which makes her a completely normal human being).

 

Part of why she is angry is because she is grieving, and anger is part of grief.

 

 

post #35 of 59
Quote:
Originally Posted by aus5 View Post

And when you say "back off", umm, from what?

I think I have told her a total of 3 times that he should be assessed, I dropped it immediately when it was clear she was not open to the conversation and waited months to bring it up again and only in context. I did kind of feel obligated to do so because I felt he needed immediate help

I don't get "back off"at all.


Well I won't presume to speak for the others that said it, but by "back off" I meant quit trying to fix things and offering unsolicited advice and trying to make her feel better by saying things that will just make things worse like "it's not terminal."  Just be there for her, listen to her, and let her know you hear her.  It's pretty clear cut really.  You came here asking for advice from parents with children with special needs, and pretty much everyone gave you the same advice just worded in different ways.  I'm not sure what more you need.  

 

post #36 of 59
Quote:
Originally Posted by aus5 View Post

 

 

She brings it up, I say something, she explodes, I'm lost.

She clearly wants something from me, I had no idea what.

 



She might just be mad, and you are a safe person to explode on.

 

 

When she explodes you could say that you have noticed she seems mad at you.  Ask her if you are doing anything that is bugging her, or why she seems so angry with you.  Maybe asking her what is up will help give you more information on if you are doing anything to tick her off or what she needs from you in conversations.  

 

If you do not think a frank conversation will work (or do not want to burden one with her now), I would adopt a conversation pattern where you reflect back what she says.  You can ask clarifying questions, or questions about her opinions, but you do not give your own opinion.  

 

Ex:

 

Do Not do this:

 

sister:   Ds school is driving me crazy!

you:   You could switch schools .

 

or this:

sister:  DS's school is driving me crazy

you:     I hear you!  My daughter school is as well (she probably does not want to hear about your issues with your neurotypical childs school at this point)

 

Do this:

 

sister:  Ds school is driving me crazy

you:    OH?  What is bothering you about it.

 

Make sure you have an open body image while doing this - lean a little towards her, no arms crossed, that sort of thing.  

 

Asserting your own boundaries is Ok if you like when she explodes  "do not yell at me.  If you have an issue with me, let me know and we can discuss it without yelling".

 

I will say that I still walk on eggshells a bit around my sister, even though her kids are 9 and 12.  Serious special needs do not go away.  The relationship is a bit less give and take than I would like (I do most of the giving, IMHO) but that is life, I guess.  She is my sister, I love her, it is what she needs.

 

 

 

 

 

 

 

 

 

 

 

 

post #37 of 59

 

 

Quote:
Originally Posted by kathymuggle View Post

 

The special needs board at MDC has not been a safe place for me to vent (although there are times I could have used it). I love MDC (look at my post count!) and can talk in most forums about most things - but I cannot talk about how autism affects my extended family on this forum.  It is too much of a hot topic - and once again, who the heck am I to be complaining?   I have found real life friends and family to be better support.  

 


 

This board has most SN parents on it.  It is not the job of SN parents to take care of the other members of the family's feelings about the SN.  We have enough to deal with taking care of our SN kids and with taking care of ourselves. We're tapped out.  We haven't got what you need. 

 

I appreciate that OP needs support, but she's asking the wrong people for it. 

post #38 of 59
Quote:
Originally Posted by RiverTam View Post

 

 


 

This board has most SN parents on it.  It is not the job of SN parents to take care of the other members of the family's feelings about the SN.  We have enough to deal with taking care of our SN kids and with taking care of ourselves. We're tapped out.  We haven't got what you need. 

 

I appreciate that OP needs support, but she's asking the wrong people for it. 

I know.  

 

As an extended family member of people with SN, I do need support on occasion, but I am not sure where to get it. I did take a look around the web to no avail, so if anyone has some links, I would appreciate it.  

 

I also think a subforum or thread specifically for extended family members and friends  of those with special needs might be useful.   I might start a thread and see where it goes. 

 

I did look at the user guidelines to see if this forum was specifically for parents dealing with special needs - and it did not say that.  It said "family."

 

I absolutely agree that it is not the job of SN parents to look after the needs of extended family members.  

 

This, however, is a board for SN issues.  You are not my sister.  I am not burdening you.  I do not expect you to care when I say it is isolating to grapple with the issues of special needs and have no one to talk to about it.  I took a look at a graph last night (I can find it if you like) that showed that about 1/2 of people reported worse relationships with family and friends as a result of dealing with special needs children.  Linda mentioned losing a few friends over it.  I suspect it is an issue - and having a safe place to talk about issues, what worked, etc could only be beneficial, and might benefit the special needs community as a whole.   It does not have to be here - but as far as I can tell there is little out there.

 


 

 

post #39 of 59

 

Quote:

Originally Posted by kathymuggle View Post

If you do not think a frank conversation will work (or do not want to burden one with her now), I would adopt a conversation pattern where you reflect back what she says.  You can ask clarifying questions, or questions about her opinions, but you do not give your own opinion.  

 

Ex:

 

Do Not do this:

 

sister:   Ds school is driving me crazy!

you:   You could switch schools .

 

or this:

sister:  DS's school is driving me crazy

you:     I hear you!  My daughter school is as well (she probably does not want to hear about your issues with your neurotypical childs school at this point)

 

Do this:

 

sister:  Ds school is driving me crazy

you:    OH?  What is bothering you about it.

 

Make sure you have an open body image while doing this - lean a little towards her, no arms crossed, that sort of thing.  

 

Asserting your own boundaries is Ok if you like when she explodes  "do not yell at me.  If you have an issue with me, let me know and we can discuss it without yelling".

 

I will say that I still walk on eggshells a bit around my sister, even though her kids are 9 and 12.  Serious special needs do not go away.  The relationship is a bit less give and take than I would like (I do most of the giving, IMHO) but that is life, I guess.  She is my sister, I love her, it is what she needs.


I think the examples given here are relevant for dealing with anyone, not just the parent of a child with special needs.  I know I can't stand it when I start venting about something, like something completely unrelated to my son's autism, to a friend or my mom or my husband, and they try to automatically give me advice how to fix it rather than just letting me get it off my chest, or they chime in with their own story without really hearing me.  I'm sure I'm guilty of doing that at times, and I know no one is perfect, but nonetheless, it's irritating. 

 

So basically, I think the way you treat a parent of a child with SN is the way you should treat everyone.  I think the problem in the OP is simply that there is bad communication to begin with which is making things even more challenging now.  I don't think anyone should come away from this thread thinking they need to walk on eggshells around SN parents.  I know I'd be mortified if anyone around me felt that way. 

post #40 of 59
Quote:
Originally Posted by kathymuggle View Post

I did look at the user guidelines to see if this forum was specifically for parents dealing with special needs - and it did not say that.  It said "family."

 

I absolutely agree that it is not the job of SN parents to look after the needs of extended family members.  

 

This, however, is a board for SN issues.  You are not my sister.  I am not burdening you.  I do not expect you to care when I say it is isolating to grapple with the issues of special needs and have no one to talk to about it.  I took a look at a graph last night (I can find it if you like) that showed that about 1/2 of people reported worse relationships with family and friends as a result of dealing with special needs children.  Linda mentioned losing a few friends over it.  I suspect it is an issue - and having a safe place to talk about issues, what worked, etc could only be beneficial, and might benefit the special needs community as a whole.   It does not have to be here - but as far as I can tell there is little out there.

 


Yeah, but the name of the forum is "Special Needs Parenting."  And if you read further in the guidelines, it states "parenting the special needs child comes with many rewards and challenges that are unique to each family. This forum is a place to discuss these issues with like-minded members" and "please join us in supporting parents of special needs children as they work together to deal with everyday issues and parenting while practicing Natural Family Living." So yes, it's open to all members and anyone can post, but it is here for the support of parents. I think the problem with opening the discussion up for how hard it is to be an extended family member of a child with SN is that inevitably there will be a discussion of how hard it is to deal with the parents as we've already seen here which doesn't make for a really supportive environment.


Edited by AbbyGrant - 6/23/12 at 10:07am
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