How do you deal with others wanting to start a SN conversation? - Mothering Forums

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Old 12-01-2008, 02:23 AM - Thread Starter
 
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DS is 14 months now. He has down syndrome.

I am starting to notice other's awareness of him being different. But I am a little clueless about how to acknowledge other's tactful advances. In fact sometimes it's not till 10 minutes later that I realize somebody was hinting that they want to talk about it.

An example would be the video store clerk. She has commented how cute DS is. Something about the overly sincere way she says it tells me she is in the know. She mentioned her nephew that is the same age. This last time I saw her she mentioned her nephew just starting sitting up on his own (sounds like he has a developmental delay) and she showed me a beautiful picture of him. He looked like he could also have Ds but I am no expert.

So how would you respond to her? I would not mind talking about it but I don't always feel like being the first person to mention Ds. KWIM?

Another example would be a time I was shopping in Target. Another women stopped to admire my DS. She mentioned how cute he was and then made a nice comment about his beautiful eyes. How unique there are, how stunning. I definitely had the sense she wanted to talk about Ds and she was waiting for me to mention it but I just was not sure how to respond.

I guess my quandary stems from the fact that I do not want to make Ds such a big deal. It's not the most important thing about my son. But I also am OK about talking about it...I just don't want to be the first person to mention it to people I don't have some kind of relationship with.

It's a little hard to explain this, I hope I am making sense. Anybody else feel this way? Anybody have any suggestions for how to smoothly get a SN conversation going with saying "My son has Ds."?

Maybe I am a little clearer in post #4.

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Old 12-01-2008, 10:37 AM
 
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I think you have to use your gut reaction. There are some people I will tell whats wrong with my daughter with a brief explaination. Others I will tell more in depth.

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Old 12-01-2008, 10:46 AM
 
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I don't mind at all. Then again, my son's needs are not physically obvious (unless he's headbanging on the floor in the grocery store, but that's not really the time for me to be engaging someone in casual chat about autistic meltdowns!) so it's less likely for that to happen with me. But when someone does ask or hint or whatever, I almost always say that yes, Mark is autistic and that's why, for instance, he's laying face down on the floor in the middle of the church narthex. The carpet design is just killer out there and he can't resist after 90 minutes of being cooped up in the sunday school classroom and following the rules, sitting close to other kids and being bombarded by the flourescent lights. I also take the opportunity to quickly slip in something else - but see how Mark is awesome and fun and cool and engaging and bright and funny? Yeah. He's not "JUST" autistic. He's just another kid, just a 3 1/2 year old boy who happens to need a little (ok, a lot) extra tlc push through the day. I bet you know other autistic people but don't even realize it. I use the opportunity to advocate and educate a tad and push how cool my son really is. If I look at it that way it helps me feel less "oh gosh here we go again" about it.

Jenna, where are ya? I know you've got some to add here and I miss your input, lady! I'm all alone over there, ya know. *sniff, sniff*
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Old 12-01-2008, 01:10 PM - Thread Starter
 
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Thanks Mommas.

I think some of my confusion about how to handle these type of interactions is that I do not want to label DS has having Ds if people don't already know.

I'm completely cool to talk about it if the other person brings it up first...the cat is already out of the bag so to speak. But I don't know that the video store lady "knows" and I'd hate to make us "the family with the retarded kid" in her mind if she really doesn't know.

I guess I'm just being protective of my son as a whole person and I'm nervous about what kind of prejudices he will encounter as he grows. I've decided that I can't change peoples ignorant responses but I can certainly make it a little harder for people to be jerks by not pinning a label on my son.

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Old 12-01-2008, 01:27 PM
 
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I've been a mother of a child with Ds for 4 yrs and I still have moments where I wonder if I should say something! Mostly, I assume that people do know that he has Ds, but honestly I think not everyone does. I once had a mother of a boy with Ds tell me she didn't know he had Ds at all, even after meeting with them several times.

In the Target situation, you could of said, "Yes, his eyes are beautiful, aren't they? He has Brushfield Spots, a common trait in Down syndrome, and I just love how they make his eyes sparkle." Then she could of said, "I see them! I thought he might have Down syndrome. I have a... or know a..." That's how I have helped people open the door so to speak.

However, we lived next door to a family for over a year and never bluntly told them that Sean has Ds, we assumed they just knew by sight. One day when we were over at their house for their son's bday party, the mom said "He isn't walking yet?" Sean was 2, I said, "No not independently, he gets around like a race car with his walker." She leaned down and said to him in his face, "Well, you are just lazy, aren't you! You need to get up and walk, mister!" Ouch. I kinda stumbled thru and said "He has weak muscles in his trunk and hips and will walk once he is stronger."

I also do not feel the need for people to identify him as just the child with Ds. Luckily that doesn't really happen, to my knowledge, because his personality is so strong you notice it more than the Ds.

I'm Deborah, mama to Aidan, 11/02, Sean, 9/04 (my T21 SuperBoy), and Eleanor, 8/08.
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Old 12-01-2008, 02:00 PM
 
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My ds1 has Asperger's Syndrome and while I can tell when something is because of his brain's wiring, other ppl may think he's being obnoxious or weird. If I feel comfortable with the person, I might say, "Oh, it's just because he has Asperger's." If I don't get a good vibe from them, then I ignore it or say it in a more challenging tone: "He has Autism." I use the autism statement only if I perceive that they're rude about it. Ppl seem to shut up when they hear a word they already know.

Sometimes I want to address other SN parents when they're kids are visibly SN, but I don't want them to feel like, "Well, what do you know, lady? Your kid doesn't look like he has SN."

Ok, maybe he doesn't have a wheelchair or something, but he's still got SN.

I see an SN family and think, "Yay! They understand!" But what if they see me and think "Oh, God. Another one of those that thinks she gets it."

I've got confidence issues.

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Old 12-01-2008, 03:07 PM
 
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Often people are nervous about saying something. When My oldest DD was on chemo and had no hair people would try and promt and get info, and it was hard. It was like they wanted a sign hung around her neck "yes I have cancer".
Other people would fawn, and yet others would take a look and run the other way.
It was the hardest at the pool and one mother yelled at her kids across the building to stay away from my DD.... She hadn't seemed to notice that she was loosing her hair until that point, and then she came home and cried and said she didn't want to loose her hair it was heart breaking and made me so angry. That ignorant mother was ingraining fear of difference in her children.

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Old 12-01-2008, 03:37 PM
 
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My 5 1/2 yo son has PDD-NOS, Apraxia (severe speech issue), and hand birth defects. I get "What's wrong with him?" with regards to his hands or "I knew a kid who had a hand like that!".

Also people always repeat themselves after they ask how old he is or question me when I say he is 5. (he talks like a baby learning how to talk) (he speaks mainly in vowel sounds).

It depends on who is asking. I'm definately more generous at therapy since we're all moms of children in some kind of therapy!

I don't think of my youngest as special needs.

Sincerely,
Debra, homeschooling mom of 4 ages 12, 10, 8, and 5
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Old 12-01-2008, 09:57 PM
 
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I hear ya! I posted here in August about a run-in I had at a McDonalds. I was in line with a mom who had a Ds son about my son's age. I honestly didn't notice he had Ds at first, and sure enough the first thing I said was how beautiful his eyes were! Almost immediately I noticed the other features that made me suspect Ds, and in the play place it was all but certain after I saw his hypotonia, his hips, his mannerisms, etc. I sat near her and we made small talk while our kids played and I tried to come up with some way to broach the topic! Finally she mentioned that we were doing much better with ASL than they were, and that allowed me to talk about my son's special needs and eventually I outright asked if her son had T21.

I felt so foolish that I, as a parent of a special needs son, could not comfortably broach the topic with another parent of a special needs son!! I did what I could, kind of felt her out a little first, then talked about my son before asking about her's. She had the opportunity to say or do something to clue me in that she didn't want to talk about it, you know?

When we're at the dr's office, the hospital, the Deaf Community Resource Center, or places like that I'm usually very open with the specifics of Connor's special needs, but I also have the ulterior motive of trying to find more 22q moms! But just in the grocery store, it depends on what kind of feel I get from the person. Just this weekend I was out at Kohl's and some highschool or college aged girls commented on how cute COnnor was all snuggled up in the sling and asked how old he was. Because I just got a good vibe from them, I said "he's 21 months, he's just very small for his age." One of them asked if he was a preemie, and I said "no, but he has some special needs that make him small." They were very curious and asked me some more questions, but it no way did they seem to be prying. They were very sweet to Connor, ticked his toes while cooing at him, etc. I found out through our 3 minute conversation that one of them was thinking about studying speech/language, so she was interested in Connor's speech delay.

So anyway...all this long-windedness is to say that it really depends!! And I also admit that I'm one of those that asks probing questions, but it's so that I can connect with another mom who otherwise might feel very lost and alone, you know?

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 12-01-2008, 10:12 PM
 
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I agree it depends. Some people really just want to talk about themselves. Some are nosy. And some actually care.

These examples though: They make me want to get more SN advocacy t-shirts.

Quote:
Originally Posted by MySunflowerBoys View Post
the mom said "He isn't walking yet?" Sean was 2, I said, "No not independently, he gets around like a race car with his walker." She leaned down and said to him in his face, "Well, you are just lazy, aren't you! You need to get up and walk, mister!" Ouch. I kinda stumbled thru and said "He has weak muscles in his trunk and hips and will walk once he is stronger."
: What a horrible thing for that neighbor to say.

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.... She hadn't seemed to notice that she was loosing her hair until that point, and then she came home and cried and said she didn't want to loose her hair it was heart breaking and made me so angry. That ignorant mother was ingraining fear of difference in her children.
: Your poor daughter.
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Old 12-01-2008, 10:33 PM
 
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Well, the ASL and the magnet on Miss Kat's head should make things obvious, I think! But it doesn't always work like that I just say "She's Deaf and that is a cochlear implant. It is a device to help her hear more". I am very blunt. I have a modified thing I say for kids.
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Old 12-02-2008, 12:47 AM - Thread Starter
 
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2boyzmama, it was your post that made me realize that the Target lady was probably fishing for me to say something.

I don't remember exactly what you said but I had a head slap moment. I remember that your post made me feel good (can't remember exactly why though).

Thanks again Mommas. It's so nice to know I'm not the only momma thinking about this stuff. I don't know any IRL SN mommas that that have these kinds of thoughts. The few I know say things like "I never really thought about it" when I ask these kinds of questions.

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Old 12-02-2008, 09:03 PM
 
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Hi, here I am, Bethany!

Yea, I got loads to say since I've been there only recently. I'll have to work on it later though (and work on not turning it into a book!) but I promise I'll come back and add my insight.

First though, let me say congratulations to you Abbie, for being lucky enough to have your son as part of your family. If you don't know this already, you've got a wonderful opportunity there for having the true value/meaning of life revealed to you in the most beautiful, awful, lovely, horrible, fantastic and bittersweet way.
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Old 12-02-2008, 09:25 PM
 
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at least we don't get subtle hints, lol! usually people are really really blunt asking what's wrong with Linden. Or they say something stupid like "does he have asthma?" One heck of a case of asthma if he did.

I love talking to other special needs moms and I don't usually mind other people talking to me about it. I don't like to talk as much about it in front of Aniyah though cause she's haing a lot of problems with him being so sick. That's really my only hang up with it.
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Old 12-02-2008, 09:39 PM
 
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I want to start conversations like that all the time- my son looks completely typical, just tiny. When he had an NG tube, it actually was easier to talk to people about it in public, because most people just say, 'he looks perfecftly healthy to me, he can't be that sick!' when they hear what's going on with him. Which drives me totally batty- I know sometimes it's meant as a compliment, but usually it means they think I'm exaggerating.

There is a local mama of a younger baby with a new mito diagnosis (with a very poor prognosis) that our PT and EI case manager are trying to hook up with me- partially because my DS's dx is probably going to be metabolic or mito, but also because I've been dealing with insurance coverage, referrals, and many of the same doctors for 11 months now and could probably give her some insight.

I wish I had a way to connect with mamas of SN kids of all types when I see them, but I often don't have DS with me anyway because of his immune deficiency- and even when I do, I've noticed (even in the children's hospital) that people look at him askance when I talk about his extreme medical issues. They simply cannot believe my chubby-cheeked kid is called 'severely malnourished' by his docs, KWIM?
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Old 12-02-2008, 09:43 PM
 
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yeh, I TOTALLY know what you mean Rachel! Linden looks normal. He is SUPER cute, chatty, social. He's just a train wreck on paper. People tell me all the time that if you take away the chair, the tubes, o2 and leads then he looks perfectly healthy. I wish we had more SNs friends too cause it's just hard to relate to our friends with all normal kids. I feel like I can't talk too much about Linden's issues cause they find them "depressing." So I just don't hang out much. I just don't know where to hook up with other SNs parents in my area.

Wanna come over, it's just a short trip to TN? lol
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Old 12-02-2008, 09:51 PM
 
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yeh, I TOTALLY know what you mean Rachel! Linden looks normal. He is SUPER cute, chatty, social. He's just a train wreck on paper. People tell me all the time that if you take away the chair, the tubes, o2 and leads then he looks perfectly healthy. I wish we had more SNs friends too cause it's just hard to relate to our friends with all normal kids. I feel like I can't talk too much about Linden's issues cause they find them "depressing." So I just don't hang out much. I just don't know where to hook up with other SNs parents in my area.

Wanna come over, it's just a short trip to TN? lol
I wish I could! If we ever end up going to St. Jude's, I will visit! Oh, and my sister lives in Nashville, so there's another opportunity.

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!
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Old 12-02-2008, 10:14 PM
 
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I wish I could! If we ever end up going to St. Jude's, I will visit! Oh, and my sister lives in Nashville, so there's another opportunity.

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!
Don't leave me out! Swing by Ohio and visit us

Connor doesn't really look "weird", just a bit "off" (it's the ears, then some people are starting to notice his eyes/nose area...the wide spacing, hooded lids, flat-ish nasal bridge) but it's when I say how old he is that I get the pause that I know means they're trying to come up with a way to tactfully ask what's up. Us using ASL helps, most people assume he's deaf.

Sigh...

When is that SN compound going to be built for all of us???!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 12-02-2008, 11:34 PM
 
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I wish I could! If we ever end up going to St. Jude's, I will visit! Oh, and my sister lives in Nashville, so there's another opportunity.

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!
shoot man, if you're in Nashville I'll come down and visit you. My parents live there.

Yeh, I try very hard not to be a black cloud of doom. I write blogs that skip about 70% of the information, are ridiculously upbeat when things aren't, and is just kind of all around "la dee dah" because I don't want people to read it and think we need pity or anything. And some of the people that read it (like my mom's work friends and such) would really have a duck if I was upfront about everything. It's a hard balance to achieve being informative enough but not a downer. I probably just come off as a nut case. lol. Oh well, some day I might just stop caring what people think and just lay it all out there. I just have a hard time sharing what we think and feel about it all.
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Old 12-03-2008, 01:10 AM
 
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Justthatgirl - Yep, that's how I feel too.

I don't have people wanting to start conversations with me but I want to start conversations with other parents who have SN kids but I don't know how. Like today we went to see an immunology specialist as a children's hospital here and I was standing in the hall with a mama who had a very outgoing daughter who appeared to have DS. The mom chatted with me about the hospital elevator which was broken but I wanted to talk to her about being a SN mom but I just couldn't think of a way to interject that into a conversation that was going in a different direction especially when my child's special needs aren't readily visible. Even the nurse for the doctor thought my daughter had some social anxiety but I had to tell her "no, she's on the spectrum."

Normal is just a setting on your dryer.
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Old 12-03-2008, 04:02 AM
 
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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.

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Old 12-03-2008, 04:43 AM
 
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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".
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Old 12-03-2008, 08:30 AM
 
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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.
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Old 12-03-2008, 04:23 PM
 
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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.
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Old 12-03-2008, 05:28 PM
 
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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.
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Old 12-03-2008, 05:39 PM
 
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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.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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Old 12-03-2008, 05:47 PM
 
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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?


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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!

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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.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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Old 12-03-2008, 05:48 PM
 
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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.

 2/02, 4/05, 2/07, 11/09, and EDD 12/25/11 wave.gif

 

 

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Old 12-03-2008, 06:06 PM
 
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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.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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Old 12-03-2008, 06:06 PM
 
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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.
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