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How do you deal with others wanting to start a SN conversation? - Page 2

post #21 of 94
Quote:
Originally Posted by preemiemamarach View Post
I feel like the black cloud of doom when I walk into a room. I don't really want to talk about DS with my friends who have healthy kiddos because I'm such a freaking downer. Good to know I am not alone!
If your friends are really your friends, don't you think they should be there for you, no matter what? I am guessing they complain to you about their DC about things that are really trivial in the grand scheme of things, right? Do you put up with that?

As for the OP, I agree completely with AuntLavender. I think our society is constantly expecting that we justify things to others about anything that is different from the norm-- some people feel ENTITLED to an explanation. Oh, and that anyone who is different should feel guilty about it. However, that sense of entitlement is false. No one needs to know anything about your child, you, your family, etc. unless you WANT to share.
post #22 of 94
Back when I was a nursing mom, I used to wish there were some kind of "secret wave" I could give when I'd see other moms NIP.

And now, when I see families with SN kids (or SN parents!) I again wish for a secret wave! At the same time, I don't always want to always bring out the autism label. I have been so so so VOCAL about the autism at work (elementary school), but I have to remind myself hold back in other places. Not every situation calls for bringing up his disability, but it sure would be nice to talk to other moms who "get it".
post #23 of 94
Quote:
Originally Posted by Mizelenius View Post
If your friends are really your friends, don't you think they should be there for you, no matter what? I am guessing they complain to you about their DC about things that are really trivial in the grand scheme of things, right? Do you put up with that?
It's not so much that they wouldn't listen, but that they can't understand. When you tell them about it, they are more likely to pity you or get depressed about it when you just need support.

The friends I have with SNs kids are much more supportive and not pitying at all.
post #24 of 94
I've realized that what I want is for people to ACT like Juju is normal, but not SAY Juju is normal. I got myself built up to take the kids out for pizza for Juju's birthday a couple weeks ago. And as soon as we walk in the door an woman said to me "he's big for his age." "Oh," I said, "He's turning 1 today!" She actually said to me "can't he hold his head up any better than that?!" "No, he can't. He has CP." Then she had the nerve to say "oh, he's precious then." Grrrrr... I find it pretty hurtful though when I get comments that he is just a late bloomer, or he's doing sooo well, or he's going to be just fine, he's *just* delayed. I guess I just want people to ignore the issue, but not to the point that they deny the issue. It's hard enough to sit next to friends with 4 month old babies who are at Juju's level (and actually doing what he can do with so much less effort). I really don't want to have to talk about SN with people who haven't a clue. I'm having trouble too with all the people praying for us. I guess it's partly my introvertedness. But we went to a wedding recently, and everyone wants to see the kid they've been praying for. I've no problem with prayers, but just because someone asked you to pray doesn't mean that I'm required to give you a run down of the status of his medical condition. Sometimes I feel like prayer is just an excuse to gossip.
post #25 of 94
Quote:
Originally Posted by MotherWhimsey View Post
It's not so much that they wouldn't listen, but that they can't understand. When you tell them about it, they are more likely to pity you or get depressed about it when you just need support.

The friends I have with SNs kids are much more supportive and not pitying at all.
:

I have actually had people (mostly family) say things like, 'oh, don't tell me that!' when I mention DS may have a fatal condition. Dude, sorry it depresses you, but I'm his MOM, imagine how it makes me feel! I would just love for someone to be supportive of *me*. Ironically, my boss understands more than most people- she's a practitioner who worked primarily with terminally ill children, and she is supportive without being all 'oh, poor you' about it.

BTW, I totally love the secret wave idea! I am sure I have given some mothers pause because I am really *looking* at their SN kid- usually I don't have mine with me (a lot of these moms and babes I see at work), so I probably come off as rude. I told my coworkers that anytime they see these moms with SN/major medical issue kids come in, they can feel free to mention me and my DS's issues in case the mom would like someone to talk to. I know how alone I feel in this journey- I'm sure some of these moms feel the same way.

I know that without the Internet, I would probably be deeply depressed.
post #26 of 94
Quote:
Originally Posted by mamaverdi View Post
Some people really just want to talk about themselves. Some are nosy. And some actually care.
You nailed it!

Lately, I must come off as aloof or something because we haven't gotten ANY stupid comments. When he first came out of surgery we got the "wow, he's tired!" A LOT. We also got the "I don't know how you do it!" line a lot and of course the classic "what's wrong with him?"

I have yet to find ONE non-SN parent that I enjoy talking about my son with. They just can't and don't get it and their questions are all geared toward blaming the victim so that they can remain in their safe bubble, blah.
post #27 of 94
Quote:
Originally Posted by Ofwait View Post
It was the hardest at the pool and one mother yelled at her kids across the building to stay away from my DD....
Holy shit, . It's really sick what some people "teach" their kids about acceptance, isn't it?


Quote:
Originally Posted by MotherWhimsey View Post
I just have a hard time sharing what we think and feel about it all.
And please don't see it as pity. I genuinely care about you. I wish you lived closer!

Quote:
Originally Posted by preemiemamarach View Post
I feel like the black cloud of doom when I walk into a room. I don't really want to talk about DS with my friends who have healthy kiddos because I'm such a freaking downer. Good to know I am not alone!




A common theme for all of us is being socially stifled. That just sucks.
post #28 of 94
Quote:
Originally Posted by preemiemamarach View Post
Ironically, my boss understands more than most people- she's a practitioner who worked primarily with terminally ill children, and she is supportive without being all 'oh, poor you' about it.
Speaking here as someone w/o a child dx with SN-- how do I know if I am being supportive and not pitying?

I guess the way I look at a situation of a child with SN is that I won't understand. I don't think until one's been in a situation, they can ever truly understand. BUT, I know that means I won't understand the tough parts AND the beautiful parts . . .it's like I know I won't have to endure some thunderstorms others have to, but I also won't get to enjoy the rainbows that come out, either.
post #29 of 94
Quote:
Originally Posted by Mizelenius View Post
I know that means I won't understand the tough parts AND the beautiful parts . . .it's like I know I won't have to endure some thunderstorms others have to, but I also won't get to enjoy the rainbows that come out, either.
Here's the thing, since you asked. That would be a non-supportive thing to say. Some here have children that are dying. Where's the rainbow there?

Outsiders want to believe that we experience rainbows because that makes them feel better. My son's horrendous plight hasn't been about rainbows.
post #30 of 94
Quote:
Originally Posted by Mizelenius View Post
Speaking here as someone w/o a child dx with SN-- how do I know if I am being supportive and not pitying?

I guess the way I look at a situation of a child with SN is that I won't understand. I don't think until one's been in a situation, they can ever truly understand. BUT, I know that means I won't understand the tough parts AND the beautiful parts . . .it's like I know I won't have to endure some thunderstorms others have to, but I also won't get to enjoy the rainbows that come out, either.
I can't speak for others, but pitying usually involves a lot of saying, 'I'm so sorry, I wish I could do something, I'll pray for you, it's so sad, I can't imagine how you can handle this,' and the like.

Being supportive- rather than saying, 'I wish I could help,' I would love to hear 'What can I do to help?' I'd just like to have a little downtime. Or ideas of people/specialists that might be helpful, even if I've already talked to them.

I'd also love the opportunity to talk about how I feel without getting the sense I'm ruining someone's day. But maybe parents of typical, healthy kids won't be able to relate to much of my frustration (like the fact that I can't even look at kids my son's age while they're eating, since he can't).

Also, it's really tough to hear things about healthy kids that basically praise attributes my son is lacking- 'my kid is so big at 12 months he's wearing 2T clothes!' or 'he eats like a horse, it's amazing!' or- my personal favorite- 'he's so smart- he started walking early, he speaks in paragraphs at 12 months, blah blah blah'. For those of us who have kids who are tiny, FTT, developmentally delayed- these comments sting, like they're a judgment on our parenting abilities. (Obviously I'm assuming the parent of the typical kid in this scenario knows about my kid's special needs.) I had to leave the table at a work luncheon a few weeks ago because everyone was going on and on about their kid/grandkid in the 99th percentile for weight, walking early, etc., and how great that was. I went in the bathroom and cried.
post #31 of 94
Quote:
Originally Posted by starlein26 View Post
Outsiders want to believe that we experience rainbows because that makes them feel better. My son's horrendous plight hasn't been about rainbows.
I'm glad you said that. It's ugly, but it's true. It's not like this is some secret club where the members get special rewards for enduring the membership rites of passage.

I can't personally think of a single thing about Juju's special needs that has made my life better. The only thing I can come up with is that I am less demanding of my 2 older gifted children. I guess I'm coming closer to a true understanding that abilities do not define a person's worth.
post #32 of 94
This is such a difficult topic because it encompasses so many different conditions, emotions, privacy, etc.

To the OP, I agree with everyone that you just have to go with your gut when talking with strangers, neighbors, family, etc. You don't owe anyone an explanation.

We have experienced all sorts of comments, looks, advice, etc from people.

The one thing I CANNOT STAND for people to say is "Well he doesn't look special needs" or "Maybe someday they will have a surgery for him....they are always coming up with new surgeries"....(these are for my ds8 who is legally blind). My favorite one of all is....."I think he can see better than he lets on"....:

What I'd like to say to all family, friends, neighbors, and strangers is:
I am an exhausted mother to 4 children, two of them have special needs. I am chronically tired, emotionally spent, and one cup of coffee away from a nervous breakdown. Don't tell me how to parent my children, don't pity me but at the same time, don't expect me to just drop everything to go here or there. Leave me alone unless you are offering to help!!!!!!!!!!!!!

Oh, I wish I had the huevos to say those things....
post #33 of 94
Quote:
Originally Posted by mykdsmomy View Post
What I'd like to say to all family, friends, neighbors, and strangers is:
I am an exhausted mother to 4 children, two of them have special needs. I am chronically tired, emotionally spent, and one cup of coffee away from a nervous breakdown. Don't tell me how to parent my children, don't pity me but at the same time, don't expect me to just drop everything to go here or there. Leave me alone unless you are offering to help!!!!!!!!!!!!!
With alteration to the number of kids, I want this on a t-shirt!!!
post #34 of 94
Quote:
Originally Posted by starlein26 View Post
Outsiders want to believe that we experience rainbows because that makes them feel better. My son's horrendous plight hasn't been about rainbows.
Amen. There aren't any rainbows about a long drawn out decline and death. For real. It ALL sucks. People always tell me what a strong person I am now. It hasn't made me a better person or a stronger person, it's made me a husk of a person and sucked all my energy out. I find myself fantasizing about just jumping on a plane and running away from it all (not that I ever would, but it's a nice fantasy) where all I had to deal with and worry about was myself. I am not some super human woman. Giving birth to a sick kid did not make me special or better or anything of the sort. I just had to deal with the way life is, that's it. And pity just makes me so angry. So so so angry.
post #35 of 94
Quote:
Originally Posted by MotherWhimsey View Post
I find myself fantasizing about just jumping on a plane and running away from it all (not that I ever would, but it's a nice fantasy) where all I had to deal with and worry about was myself.
Me too.

Until you're living the stress of what-ifs with your own precious baby, you have no clue how taxing to the human spirit it can be.
post #36 of 94
Quote:
Originally Posted by starlein26 View Post
Me too.

Until you're living the stress of what-ifs with your own precious baby, you have no clue how taxing to the human spirit it can be.
me three. and then I spend days feeling crappy about having those thoughts. I just realized I cry almost 100% of the time when I'm alone (like driving to work). And- truly- nobody understands but someone who has BTDT.
post #37 of 94
Quote:
Originally Posted by preemiemamarach View Post
And- truly- nobody understands but someone who has BTDT.
That's so true, but, aside from you guys, my IRL SN friends and I never really get very personal about these things, these tremendously difficult emotions.
post #38 of 94
Quote:
Originally Posted by starlein26 View Post
That's so true, but, aside from you guys, my IRL SN friends and I never really get very personal about these things, these tremendously difficult emotions.
it's easier to do when you're not face to face with someone.
post #39 of 94
Quote:
Originally Posted by starlein26 View Post
Here's the thing, since you asked. That would be a non-supportive thing to say. Some here have children that are dying. Where's the rainbow there?

Outsiders want to believe that we experience rainbows because that makes them feel better. My son's horrendous plight hasn't been about rainbows.
I am not basing this on what I wan" to believe. I don't have child with a terminal illness, but frankly, my child dying from anything is my absolute worst nightmare. So, if I were to imagine my child dying, I could not personally think of a silver lining. I am basing the idea from things I've read from people writing about their children who are dying or who have died, as well as conversations I've had with my mom's friend (her DD, who was my best friend, died when she was 10 and I was 12). The "rainbows" are in reference to the gifts the child brought them and how they learned to appreciate life in ways they never would have imagined. This is no way implies that the profound changes in a person's life were ever worth the cost of a child's life.

In an ongoing effort to understand-- a frequent comment on MDC is a and "so sorry you are going through this." When someone posts that to me, I am not offended. This would NOT be an appropriate thing to say, then, to someone with a child with SNs?
post #40 of 94
Quote:
Originally Posted by Mizelenius View Post
The "rainbows" are in reference to the gifts the child brought them and how they learned to appreciate life in ways they never would have imagined.
The way grieving parents present themselves to "the rest of the world" is much, MUCH different than their interpersonal experience. Watching your child die, and being unable to stop the process, is the.most.horrific experience in the entire universe. To extract some type of "rainbow" from this experience is either done to appease others (who cannot deal with your pain) or a type of coping mechanism that I'm unaware of.
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