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#1 of 59 Old 01-25-2012, 08:46 PM - Thread Starter
 
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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!

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#2 of 59 Old 01-25-2012, 08:48 PM
 
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Back off.

 

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


Doctors aren't out to kill you or your children. Childbirth isn't inherently safe. Science is actually smarter than your intuition. Lighten up. Use sunscreen.

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#3 of 59 Old 01-25-2012, 08:55 PM - Thread Starter
 
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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

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#4 of 59 Old 01-25-2012, 09:03 PM - Thread Starter
 
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really, one of your whole sets of relatives are going through a hard time and you just "back off"? Just stop speaking to them?

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#5 of 59 Old 01-25-2012, 09:06 PM
 
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Quote:
Originally Posted by aus5 View Post

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.


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#6 of 59 Old 01-25-2012, 09:33 PM - Thread Starter
 
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Originally Posted by ErinYay View Post



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

 

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#7 of 59 Old 01-25-2012, 10:08 PM
 
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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?

 

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#8 of 59 Old 01-25-2012, 11:42 PM - Thread Starter
 
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Quote:

 

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

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#9 of 59 Old 01-26-2012, 12:56 AM
 
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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. hug.gif , Im sure it isnt easy to deal with her right now, but try and remember that she needs your love, not your judgment.
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#10 of 59 Old 01-26-2012, 01:18 AM
 
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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.

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#11 of 59 Old 01-26-2012, 02:06 AM - Thread Starter
 
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Quote:
Originally Posted by Adaline'sMama View Post

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

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#12 of 59 Old 01-26-2012, 07:30 AM
 
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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.  

 

 

 

 

 

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#13 of 59 Old 01-26-2012, 07:41 AM
 
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I'm confused... is he actually SN?  Or is he just being evaluated?  How old is he?  

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#14 of 59 Old 01-26-2012, 08:33 AM
 
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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. 

 

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#15 of 59 Old 01-26-2012, 08:50 AM
 
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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.

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#16 of 59 Old 01-26-2012, 09:43 AM
 
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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.

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#17 of 59 Old 01-26-2012, 11:08 AM
 
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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.


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#18 of 59 Old 01-26-2012, 06:46 PM
 
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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. 


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#19 of 59 Old 01-26-2012, 08:21 PM
 
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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.

 

 


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#20 of 59 Old 01-27-2012, 05:39 AM
 
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Originally Posted by faithsstuff View Post

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 threadsmile.gif.

 

 

 

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#21 of 59 Old 01-27-2012, 06:45 AM
 
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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.  

 

 

 

 

 

 

 

 

 

 

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#22 of 59 Old 01-27-2012, 07:07 AM
 
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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.  

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#23 of 59 Old 01-27-2012, 07:45 AM
 
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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.

 

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nm

 

 

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#25 of 59 Old 01-27-2012, 09:46 AM
 
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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. 

 

 

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#26 of 59 Old 01-27-2012, 09:48 AM
 
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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. 


Doctors aren't out to kill you or your children. Childbirth isn't inherently safe. Science is actually smarter than your intuition. Lighten up. Use sunscreen.

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#27 of 59 Old 01-27-2012, 09:59 AM
 
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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.


Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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#28 of 59 Old 01-27-2012, 10:50 AM
 
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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

 

 

 

 

 

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#29 of 59 Old 01-27-2012, 11:10 AM
 
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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.

 

 


Doctors aren't out to kill you or your children. Childbirth isn't inherently safe. Science is actually smarter than your intuition. Lighten up. Use sunscreen.

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#30 of 59 Old 01-27-2012, 11:46 AM
 
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I think that subforum idea is a good one, too. 


Busy keeping up with three children and an awful lot of chickens!

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