Comments for Musings of a Distractible Mind

Comment on Call Off the Dogs by Dr. Rob

Dr. Rob — Sun, 01 Aug 2010 02:44:35 +0000

I appreciate your tone.

The reason I wrote this is that since I've started practice, I've taken care of numerous kids with autism, down's syndrome, and other mental/emotional disorders. I've not met one of these parents who would have wished for this before it happened, but neither have I met a parent who is bitter about it. In fact, most of the parents of down's syndrome children talk about how wonderful these kids are. The parents of kids with autism are similar, except that their behavioral challenges are bigger. They do talk about how hard it is to be in their position (as do all parents of disabled children), but they do not get angry when we talk about the good things their kids bring to the table, when I take joy in their kids.

Go argue with Orac (http://scienceblogs.com/insolence) about vaccines. I have heard the arguments and don't want this blog to become a forum about the pros/cons of vaccination. I blog about other stuff - the personal side of being a doctor, mainly. I can tell you that the arguments given by the pro-vaccine side are the ones I agree with, but I'll let others do the arguing for me. I am grieved when I see children dying of vaccine-preventable diseases, and have vaccinated all of my kids without hesitation.

I absolutely hated having to turn on mediation of comments and then turn off comments completely for the previous post about autism. The reason I did was because of the folks at AoA misrepresenting me and then recommending people come over here and comment based on that misrepresentation. I hope I don't ever have to do that again, as I really like to hear opposing sides of what I think. It makes me less likely to be wrong.

Again, I really didn't mean to say that autism is the "new normal." I meant to say that, given the hardships I see in other kids and their parents, there is a special delight I only get when seeing an autistic child. To me, this makes me wonder about what the value is of normality.

And please leave the immunization issue alone.

Comment on Call Off the Dogs by jillian

jillian — Sun, 01 Aug 2010 02:31:08 +0000

Well, there are 2 basic approaches to the autistic spectrum, I think, and whatever you say about autism, you're going to piss some people off. Either the parents, who want to cure their disabled children; or the autistic people themselves and their supporters, who want to find ways to help people on the spectrum achieve happiness and success however they might define it.

I happen to be on the side of autistic activists themselves, who like to use the term “neurodiversity” to refer to the many ways the human brain can work. They quite reasonably resent being represented as disabled, retarded, mentally ill, or broken people; and they deserve to be welcomed into society with all their differences recognized. They may need therapy to help them integrate, but that doesn't mean they are broken and need to be fixed.

Comment on Call Off the Dogs by Fosnock

Fosnock — Sun, 01 Aug 2010 02:25:24 +0000

Dr. Rob,

I see what you were trying to say however you need to reread your post. The most noticeably part that standouts at least for me is the following "Normal is overrated. Normal is arbitrary and evasive. Nobody is normal; we all bring our own uniqueness to this world that should be appreciated for what it is".

Only a person who has never had to strive for "normal" could make a comment like that. You would have been better off simply saying "if life hands you lemons, make lemonade" or "take pleasure in the little things in life". The comment which was meant to be encouraging at least in my eye's comes across as arrogant, and condescending.

FYI It is true that "they are unique people with their own strengths and weaknesses. They bring me joy when I see them – more joy than many “normal” kids bring," but so do kids with Down Syndrome, and I would not wish that genetic defect on my worst enemy. In other words its hard to concentrate on the positive when it is outweighed by the negative. The parents are trying to tell you that they deal day in and day out with the children, and it is not easy to simply do as you say, I know parents who took years to simply deal with the situation emotionally much less start to look at the positive things in life. These children may bring you joy but are you dealing with them day in and day out? A more compassionate statement would have been something like ""they are unique people with their own strengths and weaknesses. They bring me joy when I see them – although they may be far from "normal" I find the autistic children's capacity for love and joy to exceed many of the so called “normal” kids, but most of the parents do not see that aspect of their children, they tend to only see the negative aspects of this condition"

I imagine the main issue you avoid to see with this article is the frustration of the parents. For example in the case of Down Syndrome they know the cause of it, but with Autism nobody can tell the parents what went wrong so they are left gasping at straws. Then they are ridiculed for grasping the straws. The parents do not want to "maintaining their status as victims" they simply want answers, and although they may learn to deal with the situation until they get them they will remain a hostile bunch.

It is to my understanding that in order to attack someone who is delusional you must present facts in order to break the delusion. I'm not saying that the parents are delusional but what I'm saying is that if you want to attack the "autism-vaccine" link you have to present some facts not just on what is not causing it but what is causing it. Its hard to prove a negative, but their would be little debate on the cause of Autism if the scientific community could prove a positive.

These are just my thoughts I hope they are taken as constructive criticism, and not as an attack. You seem like a fine pediatrician and I would take my child to you for checkups and for whatever ails them.

Comment on Call Off the Dogs by Arobert6

Arobert6 — Sat, 31 Jul 2010 17:10:49 +0000

Isn't it marvelous when you see someone with an obvious handicap live as an overcomer? When our daughter's thyroid was removed she found a beautiful butterfly tattoo that signified you were a survivor of thyroid cancer. When she showed it to me I gave a silent sigh. I am not fond of tattoos, but that's my personal preference. Anyhoo………I said to her, “But you are so much more than just a thyroid cancer survivor.” She put the idea aside, but she will be 18 years old soon and the topic came up again. She made the decision to have a foot tattoo with scripture. On the inside of one foot it would say, “II Corinthians 5:7″ then on the inside of the other foot it will say, “We walk by faith..not by sight.” I sighed with delight this time because she realized on her own that her identity is in Christ. When we come to that realization we realize there are no true victims among those who believe in the Sovereignty of God (even when you are toying with thoughts that you are caught in the bad plot of a poorly written novel! I realize that's oxymoronish…….but knowing God is in control, and not ourselves, is a gift beyond measure.

Comment on Call Off the Dogs by smilinganyway

smilinganyway — Sat, 31 Jul 2010 16:51:09 +0000

i know im new to your blog so pardon me if i missed something……………but for
me, the letter made me appreciate that you were thinking beyond your perspective and i appreciated that. however, i didnt agree with your advice, it has not worked for me, and i said that and why. please dont take it wrong, but in a way, you are seemingly lumping all of us together who disagreed with you. sometimes when a person is in constant physical pain it is hard to get the perfect words to even describe . one thing that surprised me, if im being honest, is that a doctor that wrote such a wonderful and compassionate letter to ill people would then seem to be so defensive in the follow up posts. that was what caused me to post. not the letter. there is no gentle way to say that really and sorry if it stings a little………some of us get it totally what you say in the letter. i just disagree, its not worked for me that way, and i am as expert in saying that as you are in saying what works from a doctors angle. i have been an empowered patient for decades while also knowing my doctors are human and never wanting a cure, ……… the human element , both from within and without the medical field, will always make every one of our situations and experiences different . and we need to believe each other. also , if any person starts a blog they cannot control where it will go. that is the nature of a blog. responces wont be all lollipops and butterflies when you deal with people who are ostracised with life threatening /life changing issues……. hekatesgal hit it on the head. i am not sure many of the responces were directed to you personally……mine was not….. but i think you took it that way. thats just how i saw it. i cant say how you or they felt………… but i appreciate the letter and the effort , a human can appreciate something but not agree with its conclusions or even much of the content. it is hard to put yourself out there as you did, and for me it was hard to put myself out there as i did too. why did i? to speak for all those out there who i know are just like me but wont ever say anything or dont even have a computer. so maybe those more anger filled posts were doing the same thing, maybe thinking if enough 'people on the inside' read what they say, things may change. thats why i posted and why i encourage you in your efforts to become an 'empowered doctor'……… in that you can challenge other doctors to do better, even report incidents you see . i cant do that. you can say some things that i cant , talk to people that will take you seriously that wont give me the time of day. change for you and for me will only come when more doctors get empowered to fight for their patients more to the insurance people, the office/hospital managers,
attending doctors, all sorts of medical people who may be bullies or apathetic or lacking knowledge. in the end you wont be so burdened by patients like me becauee more doctors will be like you!!!!!!!!!so i hope you dont paint all of us who disagree with you in the same brush because that is doing exactly what you say many chronically ill do to doctors. i dont know what else to say except thank you for putting your perspective out there………. i hope my perspective is as valid too…………….

Comment on Call Off the Dogs by Red01

Red01 — Sat, 31 Jul 2010 06:50:27 +0000

I look forward to your posts. As someone who has had a lifetime of chronic issues and misdiagnosis, I have loved reading things from the other side of exam table. It has helped me to see my Dr's as human beings and perhaps I am a better patient for it. Thanks for helping us, as patients and doctors, to meet somewhere in the middle. Thank you!

Comment on Call Off the Dogs by autismherd

autismherd — Sat, 31 Jul 2010 06:22:13 +0000

Sadly, some people just want to be angry. I have found this in the autism community. I have run across many of your angry commenter's in other places on the net. Sometimes I think that anger is the only thing that keeps them going..gives them a purpose. Because without it, what would they have? How could they justify accepting disability in a world that generally shuns it?
I thought that your post was lovely in its honesty. As a parent to four wonderful kids-three of whom are on the autism spectrum, I am always happy to find such positive posts. I appreciated it very much. As did many many other people.

Comment on Call Off the Dogs by Old Geezer

Old Geezer — Sat, 31 Jul 2010 05:43:05 +0000

No need to call off the dogs. As you may have noticed, the mob stormed through the garden, smashed down the flowers, looked around and said, “My work here is done.” They're pretty much miles down the road by now.

Comment on Call Off the Dogs by Adrienne

Adrienne — Sat, 31 Jul 2010 03:43:38 +0000

Hey, you don't know me, but as I was preparing a guest post for Erin, she linked me here. What you wrote, and the ensuing kerfluffle (by which I mean clusterfuck but I'm new here and don't necessarily want to show my foul mouth) changed that post, focused it.

I loved the post and I agree, but I think you unintentionally tapped into a specific vein of anger (resentment, rage) within the community of parents of kids with emotional and behavioral challenges feel, or have felt. You didn't mean it that way, and people should pay closer attention before they burst forth, guns blazing, but that's my sense of what happened.

Well, except for the stuff about JM and all of that. I don't understand that shit AT ALL. But my kid is mentally ill, not autistic, so the controversy and drama in my life is a different flavor. Same stuff (except I am accused of being duped BY doctors, rather than being the doctor who dupes), really, but with different symbols and faces.

Anyway, thanks for letting me ramble and I believe my guest post goes up over at Erin's blog tomorrow. I appreciate your blog and I'll be back.

Comment on Call Off the Dogs by Toni Bernhard

Toni Bernhard — Sat, 31 Jul 2010 03:04:48 +0000

In the end, all you have is your intentions and your intention in both of those posts was good and honorable. I have a Facebook page for my book and have had so much outpouring of good wishes that it holds me up on days when I'm feeling really sick. Then I awoke this morning to someone having posted a vitriolic tirade about me and my book. She doesn't know me (we're not even Facebook friends). She hasn't read the book because it hasn't been released yet. My initial reaction was “and same to you!” but then I thought how miserable she must be to have done that, no matter what her motive. I took a deep breath, deleted the post, and started my day anew. I'm glad to see that you seem to have done the same with your “Blast From the Past” post.