I wrote a post, and then took it down. It may have been too mean or incendiary.
It was about another blogger who boasts about interfering with doctors and nurses caring for other kids, how he is always giving his opinion to others on what they should be doing. He, like me, is a single dad of a severely disabled child. Obviously, I disagree with his self-described actions. I did not name him, nor his blog.
During the short time that post was up, I got this comment on it:
Having read your posts and having trust in your judgments (most of the time), I ‘m going to assume this blogger is truly a pain. However, he has touched on some important things. One of kids spent a lot of time in the hospital, and, yes, I made it my business to know as much as I could regarding his care. It is to the credit of the medical staff then and there that I didn’t catch much that were mistakes, but there were some made. He nearly got blood once when he did not need it. I’m glad I caught it because a few years later we were notified that anyone given blood at that time might have been given tainted products. Another time, a kid nearly got the wrong chemo. He was on the same regiment as my son, and I knew the protocol cold. I also knew what interval he was from where my son was, so when I saw what he was about to get, I questioned. The meds were immediately removed. They screwed up. Yeah, it happened. Other things were minor, but yes, sometimes things were not done properly. Mistakes were made.
I, too, belong to a message board with other parents who shared my experience or are undergoing the same now. It is a very active board, and we learn ever so much from each other. I’ve never seen any problems on the board and no one monopolizes it. It’s the friendliest board with the best sentiment of any I have seen. Not that we all agree on things, either. There is respect for different views and appreciation that others share them. And I have to disagree with you about the guy in the lawyer’s office. There have been times when a parent truly needed to be told something was wrong with a child. There was even a case where a cancer diagnosis was made from an internet picture when an observant outsider noticed the “white eye” characteristic to retinoblastoma. Yes, she could have been wrong, but she wasn’t. Pearl Buck did not really “get” that her child had issues until someone pointed it out to her. A little boy I know was diagnosed with a syndrome that was missed by his doctors and not noticed by his parents, but picked up by a stranger. Yes, those parents were insulted at first by the remark, but it turned out to be on target, and the parents did not know.
So is butting in okay? The thought of some other parent telling the doctors or nurses where my son resides anything about his care makes me crazy. Maybe it’s just me.
Oh no, you’re not alone. I also am pretty sure I know which blogger you’re talking about. If I have the right guy, I agree wholeheartedly – he sounds like a royal pain.
It’s difficult enough as it is to make decisions regarding our children’s care on our own. To have a stranger butt in and give unsolicited criticism would simply not be appreciated, and would likely lead me to react in a rather unfriendly manner.
Given that your son can not advocate for himself, it seems like it would be a good thing if another parent pointed out that a doctor, nurse or care provider was in danger of making a mistake. It is ultimately up to the professional whether to listen, but mistakes are made all the time. The doctor and nurse at the facility I worked for made more and worse mistakes than any other staff members – and I worked with some of the most stupid people alive.
Even I will agree that seeing a medical error and pointing it out, quietly, to the provider may very well be appropriate. The case I am talking about was boasting how he thought the care on a more global scale was wrong. In that case, do you talk to the parent, the medical personnel or no one?
Oh, in that case you shut your fat mouth unless you are prepared to make a presentation backed up by multiple, published, peer-reviewed studies which specifically counter-indicate the present course of treatment.
when butting in, I think you always have to outweigh the annoyance of the butting in, to the gain of it. In your situation SD, you know more about the problems with your daughter than anyone else in the world, especially more than the doctors and I can understand that people butting in can be a major annoyance, but how can they know you know so much if they don’t know you?
Most people are actually trying to help when they but in. Keep that in mind and you will get a lot less annoyed.
When we were in hospital in 2000, we spent the entire three months with one little guy named Alex. He was around three. He had already been there a month ahead of us. His parents could only visit on weekends for a number of reasons. We watched that little guy day in and day out because we RARELY left our daughter’s side. There were other families in the room too (a quad…horror) and we were all very close and talked to each other about our kids but never, EVER, did we question choices of treatment, or attempt to direct or re-direct medical personnel with regards to care. As for Alex, whose care was just barely adequate due to staff shortages, we just felt sorry for the poor little bugger and that was the long and the short of it. I don’t know how anyone can attempt to make suggestions about care plans if the entirety of the child’s history, condition and prognosis is unknown. It doesn’t make any sense. As close as we were to the people in the room, we certainly didn’t know all the details of their personal situations. We were definitely way on the alternative medicine side…brought in an acupuncturist…and later, two parents queried us as to our methods. THEN and only then, did we provide information. We have kept in touch with these people over the years. Otherwise…mouth shut in a hospital environment.
You are always going to see an exception to any rule. Period. I can tell you that it is a good idea to wear seat belts, and someone else can tell you that not wearing seat belts saved his life. But I certainly don’t believe that is what your post was about.
Let’s face it, humans become doctors and nurses, and therefore, doctors and nurses will occasionally fuck up. You can remove the occasionally for ‘school’ nurses if you want. But the majority of the time they do not. That’s the truth of the law of percentages. Otherwise it would be mass chaos.
Now…should someone point out an error if they see it? Was that the point of your post? Maybe. Could be. Might be. That’s some good, chewy material. Good debate. I personally think you should speak up if you think you see someone making a mistake that could cost someone dearly…but you better be damn sure you know what you are talking about. I say that only because I played the scenario in my head with me having to face the wrath of YOU.
In my head I was stepping in to actually help Pearlsky from some bonehead thing that was to be done to her by Nurse Ratched.
Pearlsky is not my daughter (you and I never had sex, right?). But if I saw a professional (it’s so hard to say that with a straight face) like Nurse Ratched not giving her an amino acid that I knew she was supposed to receive I would step in and say something.
Now you don’t know me and I do not know you. We are, in effect, strangers. How would you feel about that? Would it piss you off? I am doing exactly what you wrote about this other guy doing, stepping in and interfering…but if I know my SD’s (I always want to say STD’s when I type that) I am guessing, (yes I know I assumed before and got yer dander up), but I am guessing you might be OK with it.
So I think it is not the ACT that pisses you off necessarily, if it is done in the right circumstances with the right intentions, it’s this numbnuts hisself. I’ve been trying to figure out since yesterday who the jackass actually is because odds are if you don’t like him I’m not gonna like him either. And what he is DOING probably isn’t so much the problem. It is HOW he does it and how he presents himself after the fact, probably very heroically.
Which is horseshit.
Real ‘HEROES’ do not label themselves as such. They just go out and do what they have to do and try to live their lives, help others, become better people and do the best they can for their families, friends and yeah…even strangers.
They don’t advertise it, they don’t brag about it. They can talk about something they did that was cool or even great, as long as they do so with some humility, which clearly, because I read your post (I got it e-mailed to me and you can’t erase THAT, HAHAHAHAHA) this guy does NOT do.
So your blog, eloquently titled ‘Wouldn’t it be better to just be quiet?/Not to speak.’ ~Eric Fischer might have just as easily been called ‘Warning: Assholes Ahead!’ ~Ken Lilly because I think that in the end (get it?) that’s what this is about…you don’t like this guy. And you have every reason not to.
That’s my two cents anyway. Sorry, I hijacked again. I will be awaiting my spanking in the usual location.
What’s with all the little question marks whenever I try to make paragraphs?
[Working on fixing that … -SingleDad]
I do agree with those who say there are exceptions. Speaking up when you see a nonverbal kid being physically mistreated by an OT during therapy (unfortunately, that happened to us)? Totally OK and expected that a stranger would step in on the child’s behalf. Having a stranger hear about my son’s latest spinal cord surgery and berate me for putting him in danger without really knowing anything about the procedure? Not cool at all. Also, as Ken said, those who interfere out of true concern do so – well, simply out of true concern. They don’t run off to brag about their superiority or make themselves out to be heroes.
That said, I now have the image in my head of the parent to whom you referred barging into the OR and criticizing the neurosurgeon who performed our recent surgery. “You’re doing it wrong! That’s OK, I brought my own scissors…”
The case I am talking about was boasting how he thought the care on a more global scale was wrong. In that case, do you talk to the parent, the medical personnel or no one?
In that case I suggest the person in question apply to medical school. He’d earn his degree in no time at all since he already has enough experience to correct healthcare professionals, right? His hubris is laughable.
Ah, I didn’t mean to reprimand you and I sure hope you didn’t take it that way. You are are truly terrific in laying out a situation in a way that makes sense. You are one of a of couple dozen blogs that i read regularly and I wish there were more out there like yours, not so much in subject matter but in the way you get to the crux of the matter. You are a powerful advocate for Pearelsky and an inspiration for all of us who have special needs people in our lives. Your ideas and logic are air tight most of the time.
I wrote what I did, because you could be describing any number of people who may feel hesitant about to do what this featured parent does, and that is what sometimes should be done. I don’t think that is what you meant. I’m sure this person has something about him that rankles others, but trying to nail down that part is like nailing jell o to the wall.
In fact, I’d love to read a post with you laying out exactly what makes a person who is clearly an advocate for his child and anyone else in the child’s situation, out of the invisible bounds. I often wonder when I have stepped over these gray areas and have become obnoxious. I may have here in my post, and if I did, I apologize profusely. I did not intend to do so.
Absolutely no apologies needed. I appreciated your comment so much, I highlighted it. Your comments are always welcome, including today’s! And thanks for the good words.
I received a couple of emails from those who saw the original post, most knew to whom I was referring (that can’t be proper English) and most agreed with what I said but would either not have said it, or would have been kinder. Oh well.