You Don't Say - But Maybe You Should

By Robin Nemeth

We were at a Memorial Day weekend cookout.
 
"You don't have to talk to people," which really means ‘there isn't much opportunity for chit chat'. I think that was my niece, who knows the restaurant business somewhat well, talking about my oldest child and her summer job making salads at the local restaurant.
 
The fact that it was said didn't bother me all that much, although it would've been better said correctly. For with all jobs, every last one that I can think of off of the top of my head at any rate, there is a need to converse. But that's ok, it's just merely a matter of semantics, the mistake that my niece made.
 
What bothered me a bit more was the look that I saw on the face of another person seated at the table, and then the looks that were exchanged. That, to me, was the social faux pas. I always find it somewhat ironic when I am aware of the social faux pas of others. The look said "Ack, this is uncomfortable, we shouldn't be bringing this up!" The look said there is something shameful in the fact that my children, some of them, don't make casual conversation much or at all.  It was the kind of look that one might see if one of my children had syphilis or were in prison for committing some horrible crime and that were brought up as a topic of public conversation. I don't remember if any of my children were present, at the time. But they had been at the table earlier and could easily have been nearby observing the conversation. And ‘the look'. 

If I myself spoke out much at social gatherings--if I were to think of the things that needed to be said instantly, instead of a day later--here are some of the things that I might say. 
 
"Here are the facts of the matter, people. I've seen some pretty darn shameful things and some pretty darn shameful people in the last few years. However, there is nothing at all shameful about my children. There isn't anything they've done, simply by not partaking with you in your small talk, that is shameful."
 
When are you going to stop making them feel as though there is?
 
Let's talk about the lost job. I felt rather like a piece of turd when, shortly before we were about to go home, I noticed my husband talking with a person who was out of work. She'd been laid off since just before the last time we'd met for some other holiday gathering, six months or a year or so ago. I should've remembered but I didn't. I should've thought to ask her about it. I felt sort of bad about that-- hell, I felt pretty bad about that-- afterward. Until I thought of something. Not one single person at that whole get together had bothered to say one word to me about the vaccine issue.
 
"You could have brought it up", said my husband to me, later that evening.
 
"Yeah right," I said, "and she could've walked up to me and, right out of the blue, said "I still haven't found work."
 
Followed by a long cold stare and then "Thanks for asking."
 
The hostess' sister had a very old high school friend from out of town over that day. A woman who had recently lost her husband. The hostess was telling me how she felt she had to make some mention of it to the woman. Give her condolences, I suppose. "But not right away", she'd said to me.
 
Was this person who'd recently lost her husband expected to walk up to people and say something on the order of "Boy it sure does suck that my husband is still dead"?
 
Was I supposed to walk up to people and say "You know, it's really got me very down in the dumps. There are all of these millions of children who were essentially destroyed, but you know, the worst part is that it's still happening. People who are fully aware of what's happening will not stop doing what they're doing. Nope, they haven't stopped yet. Nope, it hasn't been recognized by the public health officials, or by the media, yet. Yes they are still desperately trying to cover their rear ends, never mind the consequences. Yes, the lies are still being told."
 
"Thanks for asking."
 
It's never talked about by anyone. Ever. Whenever the topic might happen to be accidentally broached, the hushed silence is immediately re-observed. No matter what one's beliefs on the matter, we just can't talk about it. Can't even mention it. Have to pretend it never happened, that it isn't there.
 
I know that there are all sorts of positive things happening in the autism world right now. Somebody is bound to say that I shouldn't be dwelling on stuff.
 
Robin Nemeth is a mother with an interest in autism spectrum disorders.
 

Comments

[Tom]

I enjoyed reading Robin Nemeth's column and wanted to share a few thoughts on the matter.

The truth is that many folks--esp. children, are not adept at conversation and interacting in public. Secondly, it has become a standard, but unwritten rule to not talk about controversial subjects in public. Finally, most Americans are not that informed on most issues. I did not say not smart or intelligent, but not informed. While I think there is a connection (smart people like to study and learn what the heck is happening in the world), most people when given an intelligent argument can come around.

So we have (a) the lack of knowledge on a particular subject and (b) lack of communication skills and this combines with being ineffective at presenting our case.

So several months ago, I was at a picnic and the husband of a pediatrician was sitting there talking to me. The subject of vaccinations came up and I could tell he was immediately defensive. No problem--I know some facts on the subject but did not want to offend. For those that don't know this, let me say you should: When discussing a challenging or controversial topic with an adversary, be nice AND don't state facts! Instead, you ask questions (while knowing the facts). I said, Bob, IF there were a community of children in America who never got autism, would you want to know what it is? He said, "I suppose you're going to tell me" in a condescending tone. I said, "No, I'm not--not if you don't want to know!" Then he agreed and I mentioned Mayer Eisenstein's clinic in Illinois. He said that could be a coincidence. I said, based upon basic ratios (one in 150 children in America are now autistic) "we would expect perhaps 233 children, not zero!" I said you know, they never vaccinate! Then I said would you like another example? He said, "sure" and I said The Amish of Pennsylvania, althought they have two cases, both of whom were ADOPTED children from China and the Phillipines, if my memory serves me correctly and appeared to have been previously vaccinated before their arrival in Pennsylvania. And by the way, the Amish NEVER vaccinate their children either. They're another group of about 30,000 children." (They also don't watch television.)

He said nothing, but just got up and walked away from the table, and that was that.

So remember: Be nice, act innocent (but know your facts), ask questions, and you will never lose an argument. I could give more examples, but this is lengthy, so I'll stop now.

Tom, Nutritionist
http://tompetrie.net

[Tracy McDermott]

My son's timeline of regression into autism was directly correlated to a reaction at his 12 mos. vaccines, and that is how I explain it when his autism comes up in the public arena with strangers. Interestingly, noone ever tells me to shut up, instead they prompt me with tons of questions to validate my claim. Their eyes widen when I glance at their perfectly developing child and say "my son was speaking, playing and engaged, just like your child.." Stunned, I watch their gaze turn toward my child, most recently playing at one of those fountain parks, as he stood there with his hands over his ears, verbally stimming, as the water spout from the ground! I have toned down my conversation over the past 5 yrs since my son's diagnosis, sticking more to medical facts (sky high titers, immune dysregulation, 3 yrs of elevated mercury excretion..) and I always highlight that I am not against vaccinations, just the toxins in them, and the lack of research on combining so many at one visit (this is always a surprise to many!)
We are actually embarking on a new problem in our house. My NT daughter who is 12 will not be recieving anymore vaccines. As her friends march off for their boosters and Gardisal, I cringe. And while she is navigating the conversation well with her friends, it is still a difficult tightrope. How do you explain that your mom doesn't think it is safe, without the other child thinking their mom is putting them in harms way?? I just had one such child sitting at my kitchen table over lunch, dismayed when my daughter said she hadn't gotten a shot since she was five (they were discussing sports physicals for middle school). The child said "my mom makes me get every single one, you're lucky!" And indeed I do consider my daughter lucky that her brother's autism has enlightened us to protect her health. While the child finished lunch, she proceeded to enlighten me about her OCD tendancies that her mother recently took her to therapy for.... My daughter shot me a glance, a sly smile, and got up to put her dish in the sink. Bless her for knowing when to shut up, lol!

[Sarah]

If someone is uncomfortable being told that vaccines can injure then that's their problem.

If my son's autism comes up in conversation I sometimes take a less direct approach and say my son was born NT and his genetics screening came back normal. (this also makes people uncomfortable to hear). I said that to his language pathologist and her assistant who was in the room let out a very audible... OOOOH!

Like other posters I've also had pregnant moms approach me for advice on vaccinating .. this is advice they solicited from me knowing that my son developed autism.

No matter how much the medical community, the CDC and Pharma try to spin this, the bottom line is that parents listen to other parents. The word on the street is watch out for the CDC vaccine schedule.. space them out!!!

[Nicole]

Reading many of these comments, I want to make it clear, as I think the writer of the piece did, that we are warning people against vaccine dangers. I wear my Green Our Vaccines shirt, the one I wore while marching with thousands of others in DC, I explain to people that vaccines can injur children. But, the reality is, to get along in a world that we are already isolated in (having a child with autism is isolating in many ways) one has to know who their audience is...sometimes, you have to save your breath and move on. Some people don't get, they will never get it. Some people feel it doesn't affect them since their kids are older...for me, there are times I politely smile and leave the details behind. Everyone has their way of fighting the cause. Hopefully, the new generation is more open minded. I think they are.

[Jennifer Polak]

I was doing some research online and I came across a form for pregnant women. It was for refusal of the hepb vaccine. I printed two copies to add to my arsenal of vaccine information. I was pulling some documents together to file for religious exemption for my son when I saw it again. I took it to my son's school, where one of his teachers was 8 1/2 weeks pregnant. She was on half days, so I left it with another staff member. I apologized ahead of time that may be inappropriate and none of my business. But I also added that I have an open facebook account if she wanted to check my links for further info. The next day she thanked me and even sent me a friend request on facebook. She had made it clear to her very disapproving physician that she did not want the hepb shot, and felt that she needed this form to back herself up legally.
Here is the thing.. If she had been unwilling or offended I would have retracted and apologized. But, the responsibility would have been on her side. No One Ever Warned Me About the Shots!! I would have listened. I asked questions. The Docs reassured me. We have the info. We can't force it in social situations, but we do have a responsibility to share it.

[Deborah (www,debstake,wordpress.com]

I think the piece is well written and very insightful. However, I don't understand the hesitation some of you all feel about bringing up the vaccine issue. I have spoken to people (pregnant women in particular) in church, super markets, playgrounds etc about the dangers of vaccines. I hand out business cards with my contact information on them for those who want to learn more.

This topic is too important to be so damn politically correct about not offending the sensibilities of others. An entire generation is at stake here. I don't give a damn what people think of me. I know when I go to bed at night I have done my part for the day.

Mom4truth said it best when she said: "Let's all try to remember that silence=more damage. Our hesitation to speak the truth is Pharma's best friend."

Being forth right and willing to go out on a limb in order to spare another child, another family what we are all going through is a LOT more important than our comfort zone.

BTW I have yet to have a discussion about vaccines that wasn't appreciated by those receiving the information.

[jen]

"looks that were exchanged.." yeah, I totally agree with you. I honestly think swearing is a LOT less rude than this rude type of behaviour. I tell my kids that, too. My mother-in-law once did this to me about something and I would much rather that she had the balls to say something to my face than to do this look exchange thing. People, unless they've been hit with something life-challenging can just be kind of self-absorbed and silly about things. You are right- all the psychologists say it's better to bring up something to the person who has had a real life loss (death of spouse, accident or yes, vaccination injury). I suspect that the vaccination injury subject is simply something too scary for them to even try and digest. Everyone is just in this game of chance with the vaccines and it sucks that so many are being hurt. Take comfort in the fact that you appreciate the really important things in life.
The other day at school an ESL parent was registering their child for Kindergarten. He brought his little baby in too and the poor little girl was just scratching her little arms off with itching from exzema. Her poor little face and arms were covered in a rash. I was dying to ask about vaccines and warn them not to give any, if any, more than necessary. I don.t care if bringing up the topic freaks people out. It's too important. Keep up the good work!!

[nhokkanen]

Shame, denial, the compulsion to maintain decorum and social facades -- these all shut down healthy, helpful dialogue and propagate the epidemic. Ironic how nice people's silence helps spread this disorder we call autism.

[Nancy Naylor]

I haven't read all of the comments, but I hope they are supportive. I can imagine that every one of us have felt exactly the same way at one point or another. It's sad that to engage in the typical world we often feel like we have to pretend that everything's fine and avoid the "A" word. I miss my friends with typical kids, but sometimes it's too much stress to make them comfortable.

[Mom4truth]

Robn's article (and Nicole's comment) highlight very well how we have all been shamed into either avoiding the taboo subject of vaccine harm, or bringing it up very, very carefully - at risk of harming relationships. Reading this really helps crystalize for me the importance of being truthful and forthright about vaccine harm - come what may. After all, if I had to choose between offending a friend or neighbor and saving a child - there's no contest.

Let's all try to remember that silence=more damage. Our hesitation to speak the truth is Pharma's best friend.

We may not own the airwaves. We may not own the print media. But Pharma cannot propagandize a conversation between two friends. And has everyone e-mailed their entire e-address lists about this issue? I did that once - and received some surprisingly positive responses. Include "please forward this e-mail to concerned parents and grandparents," and your one e-mail could impact hundreds - or thousands.

Speaking of getting the truth out, what's the word on the "Friend to Jenny M." bumper stickers?

[Jim Thompson]

“Was I supposed to walk up to people and say ‘You know, it's really got me very down in the dumps. There are all of these millions of children who were essentially destroyed, but you know, the worst part is that it's still happening. People who are fully aware of what's happening will not stop doing what they're doing. Nope, they haven't stopped yet. Nope, it hasn't been recognized by the public health officials, or by the media, yet. Yes they are still desperately trying to cover their rear ends, never mind the consequences. Yes, the lies are still being told.’"

Well said. Yes, and don’t stop. And write letters to the editor. And offer a reference to a book or web site.
There are people that want to talk about it. And keep posting here. Thank you Robin.

[Benedetta Stilwell]

Good article, great insight!

If you think about what Robin said at another lever it tells you just how difficult small talk really is! How does a person figure out how or IF to get around to what their real interest are. If you bring it up wrong you could come off crazy or weird. This is a big part of small talk too.

How does a person ask about something that another person has painfully been through? Maybe they are too hurt or too ashamed of what has happened to discuss it. We wonder how will that other person react? We really have no idea what they are thinking and it is after all in the public. Will they cry, get angry - will they feel that we have been too personal and we have overstepped some line in the sand set by them? AND I HAVE Stuck my foot in my mouth too; I recently congradualated someone on the sale of their home and farm (they had to sell, because her husband had lost his job, had a stroke some years back,and recently embazzled some money because of some unclear thinking from the stroke). She was so sensitive that I knew by her facial expression I had gone too far, even perhaps lost her respect and friendship. So here is the rule I have learned. The person that is hurt is the one that brings it up. AND I will try to respond in some way to encourage them, WHICH IS HARDER than you think because you are so shocked and listening.

So, maybe it is time we learn from people that have had this barrier removed, people dignosed with Aspergers, and just blurt it out.

[Nicole]

Oh, Robin...how true. I can relate completely with your feelings. When my son was diagnosed a year and a half ago, I was very vocal about what destroyed him and how we intended to heal him. I lost friends, neighbors would walk away if I was around, and family members would quote the CDC and the AAP. If the topic of vaccines or environmental toxins came up some people thought I was crazy. Now, my son is on his way to recovery...some of the same people who could not stand to listen to me have told me how great my son is doing, but the word vaccine is never brought up. I'm allowed to say thank you. I'm allowed to talk about his many great therapists, but if I dare talk about how chelation and treating his vaccine injury has brought him back to our world, then I'm crazy, again. So, it is not discussed, not brought up, very hush..hush. Now, some people say "I don't know what you're doing, but he looks great." and I just say "thank you, a lot of hard work goes behind it." I've even been around when the same people have mentioned how horrible it is that the FDA is pulling some drugs off the market because now their showing harm. Never a mention about the drugs that harmed my kid, though.