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People Just Don't Understand (Autism Related)


AlmiraGulch
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Yesterday I had two seperate incidents that really forced me to exercise greater self-control than I would have liked. Both were related to my daughter and autism.

 

First, I was talking to my dad and somehow it came up that eldest DD (the one with Aspergers/high functioning autism spectrum disorder) has been trying a lot of new foods lately, and how happy that makes me. She has always had issues with texture, to the point that even things she really wanted to like, like mashed potatoes, she was unable to swallow because of the texture. I refuse to die on the hill of mashed potatoes, so I encourage her to try new things but no longer freak out if she doesn't. Anyway, my dad went on about how it was my fault that she was this way about food, and that if I had just made rules about it and not "coddled" her and given in to her "manipulation" she wouldn't be at this point now. I tried briefly to explain how it's par for the course for people with the same diagnosis as DD, but he wasn't having it. I wanted to argue and tell him to educate himself, and remind him how LUCKY he was to have had six perfectly healthy childrent, but it's just not worth it so I changed the subject.

 

Second, DH and I went to dinner last night with his boss and boss's wife. Somewhere in the conversation something came up about being dramatic, and people continue to be that way because others engage them (brought up by the boss's wife), and I don't remember how but it came back to DD. I told her that whatever it was was different, that she has autism, and the woman looked me in the face and said "when you stop making other people's problems your problems, their problems will disappear". As if DDs only problem was that people like me buy into her crap and if we didn't she suddenly would not have these issue anymore.

 

SERIOUSLY?

 

It was all I could do to not punch this woman in the throat. And for whatever it's worth, she doesn't have any children.

 

Anyway, between my father and this witch all I wanted to do when I got home was hug my kid and drink a bottle of wine. Somebody please explain to me what is wrong with people? And if anyone has any better suggestions of what to even say to these people when stuff like this comes up I'd love to hear it. For the record, I HAVE told my father some things before, but it doesn't matter. He's old and stubborn and believes what he believes and that's that.

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The part of me that is my father's daughter would likely tell them to go $&@/ themselves.

 

The part of me that doesn't want to be like that has gradually, oh so gradually and grudgingly, with fingernails dug in, thinks I need to take people where they are at and ask God to help me with seeing God in everyone.

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Honestly, I think ppl say stupid things as a way of reassuring themselves that they wouldn't be in the same situation...much easier to blame someone than to acknowledge that the reality of it is, there's no control over situations like this. As long as they view themselves being in control, then they're not in any danger of dealing w/the same sort of challenges that others do.

 

And, as far as your father's concerned, he probably views Autism as a black mark on his gene pool. If it's all your fault, then there's nothing wrong w/his genetics.

 

Basically, what it boils down to, is ppl are stupid and self serving.

 

I'm sorry you had to deal w/this. :grouphug:

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My standard to anyone who says things against my son is a BIG F OFF! I am just that kind of person for the most part. I do sometimes listen to older people though when they kindly give advice. Damian was diagnosed as very low functioning when he was small. I am guilty of making exuses and babying him too much. There has been time when an outsider can see things I don't so I see a grandparent saying those things. If they are said rudely I will do the standard F off though and everyone knows this.

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Wow, I do agree that the bottle of wine and the head punching would have seemed appropriate. But I have seen people on these boards give off the wall advice to people who were up front about their kid having autism, so I guess some people just want to remain clueless. I am sorry.

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(((Hugs))) < I'm on my iPod and can't find the emoticons

 

Many people really don't get it. Having a child with Asperger's has really opened my eyes to how judgmental and rigid people can be. If your child doesn't fit neatly into their little box, then they feel they have to hassle you (and often the child) about it until you make the appropriate changes to get your child into that box. Forget the reality that kids on the spectrum simply can't behave in "box-appropriate" ways - with some people, there's absolutely nothing you can say that will convince them of that. I've had someone tell me "just give me a week with your son and I'll have him turned around." This woman is just lucky I have exponentially better manners and verbal self-control than she apparently does.

 

I'm sorry you're being hit with other people's ignorance. The boss's wife especially sounds like a piece of work. Hope you can avoid her for the most part. (((Hugs)))

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I would use these scenarios to figure how not to bring up my child in these sorts of conversations and to change them if someone else brings them up. It's hard not to be able to share with your family about your dds accomplishments but it sounds like that is your reality. As for the boss's wife, she needs no information about your personal like. Think about other how your can shift the conversation to other topics. Don't let others suck you in. You know what is best for your dd. :grouphug: :grouphug:

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My MIL is like that. I used to ignore her and finally looked her in the eye and said, 'If it were that simple don't you think we would have tried it already?' My middle has texture issues too. She'd push him to eat things - when I wasn't here or I'd of gone ballistic - and once he threw up on her. That sort of ended that whole 'coddling' discussion.

 

The other woman is apparently self centered. I've dealt with those too and I smile and nod and remember that before I had kids I was a perfect parent and knew it all. And it's probably better she doesn't have kids.

 

I say smile, nod, change the subject then go home, hug your kid and have that wine. Some people just choose to be stupid. I think there is a difference between stupid and ignorant. A person does not chose to be ignorant and is open to being educated. A person who chooses to be stupid refuses to listen to anything but their predetermined conclusions.

 

I'm glad YOU are your child's parent and they aren't. :)

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I'm so glad for the new "like" button! I had to like every one of your comments. You're all right, of course. The woman in question is VERY self-centered and incredibly frustrating and high-maintenance (I wanted to hug our waiter last night because of it). And my father is just very stubborn and very "right" about everything. Always. Normally I'd be in the "Go *&^!@# yourslef" camp, but because one was my father and the other would affect my husband's daily life directly I refrained.

 

I guess I sort of get it, in that I probablly always thought (pre-kids, of course) that kids were the way they were because they didn't have strong parents. I never would have said that out loud to those parents, though. People can be so rude. And stupid.

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I do sometimes listen to older people though when they kindly give advice. Damian was diagnosed as very low functioning when he was small. I am guilty of making exuses and babying him too much. There has been time when an outsider can see things I don't so I see a grandparent saying those things. If they are said rudely I will do the standard F off though and everyone knows this.

 

I hear you. In this case, I'm definitely not guilty of babying and making excuses. If anything, I'm more of the mindset that we all have our burdens to bear, and this is her hand and she needs to learn how to live fully in spite of it. Meaning, I can be guilty of expecting too much sometimes, I think.

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I call it blame the mother syndrome, and in my case, blame the wife. I don't fight it any more because it doesn't do any good. I do what I can to smooth the paths for my two boys and DH. At this stage, that means that when I am with them, I stand by to smooth things over if it becomes necessary. I also talk to them, explain things to them, role play with them. That doesn't change a thing, but there is always hope that they will try a different tactic when what they are doing doesn't work. Actually, DH tries and he is pleased when he manages to pretend to be a good host!

 

Otherwise, I bite my tongue and let the chips fall where they may. With teachers and other overseers at school, I explain the situation once. They rarely believe me, so they have to learn the hard way -- by beating their heads against a brick wall. I think it is easier to blame me than to accept the situation and work with what it entails. Also, DH goes to all meetings about the boys at the school. I can no longer abide listening to these people.

 

I do explain the situation to close friends. Every one of them has understood the situation, which is good because otherwise, I'd dump them. I cannot have people around me who criticize my children and DH for things they cannot help (mostly to do with social skills, executive functioning skills, and narrow interests/obsessions). These are Christianity, baseball & philosophy, and books. For years, people would advise me to divorce DH and the reasons all had to do with Asperger's. These folks are summarily dismissed from my life, and I haven't had that problem in awhile.

 

Just when I think I've met everyone who thinks s/he can control other people and bend them to their will, and I should be able to do that too, I meet another one.

 

When he was 14, one of my boys visited my mother for 6 weeks. My mother and my brother knew beyond a doubt that they could get him to eat "real food". Their plan did not work because he was willing to starve. They still blame me, but they acknowledge that my son is an immoveable force when it comes to food.

 

My mother has come around. She read a couple of books written by people who have Asperger's Syndrome, and looked it up on the internet. She finally understands that I cannot change the people in my family and that they are the way they are because of Asperger's, and not because I have failed. This is wonderful because she has become very supportive of me, and that is a major blessing.

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OP, I see what you are saying. I have an Aspie DH with OCD and a 7 year old Aspie son. And no, I do not believe you could force your DD to ever get over the texture of mashed potatoes.

 

And my DS doesn't like them either!! But I do make him eat 7 (one bite per year of age. lol) bites of them when I make them. I don't let my DS (or my DH for that matter!!) get away with a lot of stuff because of their sensory stuff. I buy the right socks and underwear because they'd both spend the day adjusting themselves if I didn't, but in this house - if I plant it, grow it, and cook it - you will EAT it.

 

I think when you have kids on the spectrum, you walk a fine line. I have met people who allow their Aspie kids to just be comeplete ^$%@^$$#@ and then justify it by saying, "Well, he's on the spectrum. Of course he acts likes that." Sometimes. But sometimes the kid is just an $#@!$# too. I was at the children's museum with a former friend. Her child is on the spectrum and he is 7 too. A two year old walked up to him and tried to take a toy that the spectrum kid was next to, not even really playing with. The 7 year old SMACKED the 2 year old. Just clocked him. And the former friend justified it with the, "It's hard for autistic kids to share."

 

So I do think that some of us are not doing the best job we could at either socializing or explaining the world to some of these kids.

 

I was so happy to discover this former friend in the beginning but after a couple of months, I realized that she was really raising her son to be a JERK. And my kids were so relieved when I ended the friendship. He's just a wretched person and you can literally SEE his mother encouraging it. The only benefit to the whole mess was that it did make DS really understand how his thinking process can really hurt people and to pause more. I explained to DS that they had almost the same diagnosis and he was shocked that he was like that other boy.

 

I frankly love my quirky son. I married his quirky dad after all. But I want my quirky son to be able to have relationships and someday be able to find a partner who will be able to gently tease him out of a few of his rigid ideas if needed.

 

On the other hand, people with no kids whould ALWAYS keep their mouths shut. At all times. Always. Forever and ever.

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things to say...

 

"I remember way back when I thought I knew how to manage other people's family and problems. Then I had my own family and no matter what I tried, my formulaic answers just didn't work the way I thought they should. That's when I learned that real life seldom cooperates like I wish it would. I've found that no matter what, my child who I love more than life itself will have problems. I can beat her against a wall trying to change her and damage her irrevocably, or I can learn from her, love her and try to hold her hand through life. Which one would a good mother do?"

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People who don't live it don't get it. They really don't. My mom still thinks that putting the kids into ps would cure them of their learning disabilities. Even after the tested showed that for ds14 to succeed for example he would need an aide, and IPP and other supports in place. She is still sure that ps would cure them. She and sister also figured that ds9's encopresis was of his own creation for attention. Because yes a child loved to hold a bm for a month while his stomach grows 2 pants sizes with distention, and cry in agony until it finally passes and deal with the constant bullying due to the smell from the oozing etc. Yes that is his way of getting attention. I had a former friend that told the director the daycare my oldest was going to attend to tell them he was not special needs he was a spoiled monster, they called me to cancel his spot (the day before I was to start college classes, which is why he was to attend). They are a certified daycare(which take much more than just a regular licensed daycare) and one of the caveats of that was they are inclusive to special needs. I threatened to report them and have their certification revoked. They took him, and then proceeded to tell me all year what a joy he was in the program. They could see his learning and social issues but he was not the monster he was claimed to be. (the "friend's" mother worked there so she thought she had a right to do that), director was having coffee with her mom and her mom mentioned my son starting the friend went on and on about the monster he was.

 

People are idiots when they give advice on something like special needs when they have no experience. I mean we are used to non parents giving parenting advice, but I find it is worse when people are making comments regarding special needs. Especially when other parents comment because they think well their approach worked just fine for their completely average, NT kids, so there fore it is proof of your failings as a parent that your kid has any issues. Especially hidden disabilities like Autism. They see what they choose to see, and what they see is a spoiled coddled brat, not an amazing child with some issues that are diligently being worked on everyday.

 

Congratulations for not chewing out the bosses wife, sadly you have to play nice with the twit to make sure dh keeps his job, but I do not think there is a problem with your dh telling his boss how offensive his wife's comments were. It looks poorly on him in business to have a wife spouting crap at his side. As for your father, well I offer no advice there. When my mother or sister start in about the way to cure the kids, or blaming their issues on me I tend to get highly defensive and go on the attack. THey have learned for the most part to keep their mouths shut because I am no civil or kind or thoughtful in my response. You do not make comments about my kids like that. Trust me if their was a way to "cure" them I would have been on that train a long time ago, and I sure as heck will not take the blame for something my child can not control and that I do my best to accomodate.

 

What was your dh's reaction to the boss's wife's comments? did he say anything then? What about at the end of the night? DId he offer to hold her still so you could punch her in the throat?

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I sincerely doubt it's easy to change someone's mind until they find themselves in the same boat. People can be just plain stupid. I've even seen that attitude displayed on our beloved boards here. As the mom of an Aspie, I can completely relate. I've had my feelings hurt many times.

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:grouphug:

 

I'm so sorry. We went through a lot of years dealing with food/texture sensitivities with ds8. It's hard and most people just don't get it. After lots of therapy, he's over the worst of it, but I know how hard it is to deal with the looks and "helpful parenting suggestions" people like to make.

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My biggest support for me is a mom of one of DD's friends, who has an adult child with aspergers-because she "Gets it" 100%-and is willing to cheer over things like mashed potatoes :), and also because she can tell me which things really are "this too shall pass"-and when not to worry because she's been there, done that so much longer than I have. Having that one friend makes SUCH a big difference!

 

Good job mom-and try not to let them get you too upset, even though I know it's hard.

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Sorry. It's so hard when the disability is invisible.

 

People are like that because of regarding themselves as the standard. Sometimes, this self-reference is mostly ignorance and they've just never encountered something like autism, so it's out of their experience. In other cases, the self-reference is more like self-reverence: since they don't struggle with those things, of course everyone else's brain is just like theirs, so if they could do it, so should everyone else. Being able to declare that other people are just lazy, bad, manipulative, etc. is a way to feel superior. It's arrogance. So basic self-centeredness. In the two cases you described, your dad is not ignorant because you've tried to educate him, and the woman was just rude and grabbed the chance for a put-down.

 

You can't do anything about your boss's wife except keep future conversations away from any even tiny weakness in your own family. Allow the discussion to be all about her. I'm guessing that won't be hard.

 

With your dad, you might consider a proactive, sit-down talk about the way he interfaces with you about your child. The talk would be proactive in that it wouldn't be a reaction to anything that just happened (though this latest incident could be stated to be what propelled you into talking with him.) Ask him if, for the sake of a full relationship with you, he would be willing to read a book about autism and be willing to refrain from making judgments. Let him know that the consequences are that if he can't do that, you'll have to dial back the relationship into one that is pretty superficial--that you won't be willing any longer to share real life triumphs and challenges with him because it just ends up with you feeling hurt and you're not willing to keep it up. And then don't, if he's not willing to change.

 

Alternatively, you can just accept that your dad is the way he is and stop hoping for support.

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People who don't live it don't get it. They really don't. My mom still thinks that putting the kids into ps would cure them of their learning disabilities. Even after the tested showed that for ds14 to succeed for example he would need an aide, and IPP and other supports in place. She is still sure that ps would cure them. She and sister also figured that ds9's encopresis was of his own creation for attention. Because yes a child loved to hold a bm for a month while his stomach grows 2 pants sizes with distention, and cry in agony until it finally passes and deal with the constant bullying due to the smell from the oozing etc. Yes that is his way of getting attention. I had a former friend that told the director the daycare my oldest was going to attend to tell them he was not special needs he was a spoiled monster, they called me to cancel his spot (the day before I was to start college classes, which is why he was to attend). They are a certified daycare(which take much more than just a regular licensed daycare) and one of the caveats of that was they are inclusive to special needs. I threatened to report them and have their certification revoked. They took him, and then proceeded to tell me all year what a joy he was in the program. They could see his learning and social issues but he was not the monster he was claimed to be. (the "friend's" mother worked there so she thought she had a right to do that), director was having co

 

People are idiots when they give advice on something like special needs when they have no experience. I mean we are used to non parents giving parenting advice, but I find it is worse when people are making comments regarding special needs. Especially when other parents comment because they think well their approach worked just fine for their completely average, NT kids, so there fore it is proof of your failings as a parent that your kid has any issues. Especially hidden disabilities like Autism. They see what they choose to see, and what they see is a spoiled coddled brat, not an amazing child with some issues that are diligently being worked on everyday.

 

Congratulations for not chewing out the bosses wife, sadly you have to play nice with the twit to make sure dh keeps his job, but I do not think there is a problem with your dh telling his boss how offensive his wife's comments were. It looks poorly on him in business to have a wife spouting crap at his side. As for your father, well I offer no advice there. When my mother or sister start in about the way to cure the kids, or blaming their issues on me I tend to get highly defensive and go on the attack. THey have learned for the most part to keep their mouths shut because I am no civil or kind or thoughtful in my response. You do not make comments about my kids like that. p What about at the end of the night? DId he offer to hold her still so you could punch her in the throat?

 

 

DH said nothing . I don't even know that he noticed . Frankly, I think he secretly harbors some of the Sam feelings about DR but he would never say so, so it mat just be me being paranoid .

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:grouphug: I think people are clueless.

Try to let it go. They will not waver and think they are right.

 

If it helps, I get a similar reaction from close friends or family about my Aspie/PDD-NOS son. My MIL was the worst. Auuugh. Sad thing was, this was her only grandchild.

She really took it as a blemish on her gene pool. :confused1:

----------------------------------------------------------------------------------

**REGARDING UNSOLICITED OPINIONS: On rare occassions, I get people tell me to change doctors for son and my rare liver disease (if I run into a problem with insurance, bedside manner or trying to go to an appointment from Dallas to Houston)... and I look at them like, "Huh??" Like I can change doctors at the drop of a hat. This doctor is the only doctor in 6 states who will see an adult for the rare disease... other metabolic geneticists only see children. And he is 1 out of 6 doctors worldwide who specializes in our rare genetic disease. DUH. I have to hold myself back and let their idiotic comment slide. They really have NO IDEA.

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People are idiots when they give advice on something like special needs when they have no experience. I mean we are used to non parents giving parenting advice, but I find it is worse when people are making comments regarding special needs.

 

:iagree: :iagree: :iagree:

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People just don't get it. I have one friend who always tries to relate it to a spiritual matter. I have learned to nod and then remember not to bring it up to her again. Even those who kinda get it don't realize what a toll the day to day stuff takes on the primary caregiver and how the seemingly little things are big. Best advice, when you come up against someone with their opinions, smile as if they are not in on the secret, then come here and vent!

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I agree with what Impish said. I used to be that oh-so-smart, smug, Susie Social Worker who would NEVER have a child like THAT.

 

All I can say is God has a wicked sense of humor.

 

Hugs to you and your DD. You have grace, strength and fortitude to rise above the stubborn and witchy. They will never get it and are not worth the energy. But you are the better person because of your love and patience and wiser for the life lessons you are learning.

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She'd push him to eat things - when I wasn't here or I'd of gone ballistic - and once he threw up on her. That sort of ended that whole 'coddling' discussion.

 

:smilielol5: ah, reality bites. love it. I know I've had one who was happy to recommend classes for parenting difficult children - she spent some time with dudeling, and the next thing I knew I was being praised by the same person for how wonderfully I was working with him.

 

 

(and 1dd and I did much snickering when 2dd - who is normally great with kids, but lived on teh other side of the country - would make suggestions. ah, just you wait henry higgens. she too changed her tune.)

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I've found the most offensive are the so-called professionals who *really* should "know better". dr's who brush off concern's, give the "lazy" diagnosis becasue it's more common and less work than actually digging for a correct diagnosis. or even the "you must be a hypochondirac".

 

My son was being eval'd by one SLP who - she works with spec needs kids for pete sake - really got what she deserved from ds. (he'd had enough of her, but she wouldn't let it go - so he turned around, pointed his finger at her, and said "bang". then he walked out.)

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:grouphug: :grouphug: :grouphug:

 

Some people can not or will not believe in a reality that they do not experience.

 

And it seems to me that while some people are just "limited", some of this is rude self-centeredness. "If it isn't true in MY little life, it isn't true."

 

There is also the fear of not being in control. "This won't ever happen to me because I do X and am Y." It reduces their anxiety to think they have a fix right at hand. For those of us who walk about rarely fretting over anything, it is hard to understand the world of anxiety.

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:grouphug: I have walked in your shoes, and, like Rough Collie, have DH and 1 DS with ASD and 1DS with some neurological issues which include severe ADHD. It is hard to hear and even harder not to listen to outsiders' uninformed comments. I ached over our inability to participate in field trips and large group activities. When my children were young, I let it get to me. I doubted and felt I could do better even when I was using every resource and doing everything I could. This was foolishness! "Invisible" disabilities are the hardest to reconcile with the public, and at some point, reconciliation with the big world just isn't going to happen. Let the comments roll off. Love your family and do what you know is right. Protect your daughter form the nonsense.

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I can be a bit mean and manipulative when people get "at me" like that. One of my most effective tactics is to intentionally confuse them by intentionally "misunderstanding" their commentary as, "I'm so glad I've run into knowledgable-you! Here are all the things I used to think, aren't I silly?" It actually makes the situation quite amusing to me, and *really* unsatisfactory to the other person. I'm not sure I'm explaining quite what I mean... I'll do an example.

 

Person: Picky eating is caused by parental coddling.

(Internal translation: "Isn't is crazy how people think picky eating is caused by...)

Me: Oh, I know. It can be so hard to tell just by watching which children have their parents wrapped around their fingers and which ones actually throw up.

Person: No children actually thow up, and if they do they are just being manipulative.

(Internal Translation: "I can't believe I used to think kids threw up to be manipulative)

Me: It's so sad when children have to resort to manipulation just to get their food preferences respected in their own homes, isn't it.

Person: Kids shouldn't have food preferences.

(Internal translation: "There are people who believe kids shouldn't...)

Me: Ha-ha-haa, honestly <grin> do you know anyone on earth who doesn't have food preferences?

Person: It's a parents job to teach them to eat what they are served, no matter what.

(Internal translation: "It's a parent's job to create good eating habits.")

Me: Oh, I know what you mean: kids need to eat, and with so many options, why shouldn't they be served something that appeals to them? Right?

Person: No! I think they need to eat everything.

Me: Everything! Ha-ha-hah, I couldn't buy everything in the world. I just settle when I find a good variety that works for our family.

Person: You shouldn't let a child dictate!

Me: Yeah, kids should never have to dictate things like this. It's not OK to make kids responsible for choosing what the family eats.

Person: I *mean* that they should eat what they are served.

Me: Choosing what to serve that is healthy and appealing is part of being a good parent, that's right. Children shouldn't have to choose what to serve.

Person: NO! I don't care if it's healthy and appealing! It about the child accepting *anything*! The parents can serve *cardboard* and the kids should eat it!

Me: <long pause> Really? That doesn't sound like a good strategy to me...

Person: GAAAHHHAAAHHHH!!!

 

...

 

So, yeah, you can consider that a "confession" that I am fully capable of using conversational superpowers to make other people feel like idiots. Sometimes, I think they deserve it.

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I made a post on fb today about my dds rebelling against the idea of a large gathering in our home. I was chastised by three people and one even said I needed to do it because it's my home and that it will teach my kids kindness. I truly feel like screaming her head off right now! My close friends would've totally understood because they've seen my kids' challenges in this area. People who make statements like this really p*ss me off.

 

IOW, I get it...

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