Well, we're off, on what promises to be a great vacation (holiday). We had a mostly good day, with but a small (but typical) interchange at the motel pool after we checked in.
The pool was packed, and noisy. There were kids everywhere. Buddy Boy and Sweet Pea jumped right in, swam around some, and seemed to be having fun.
As I was watching Buddy Boy, he approached a group of kids at one end of the pool. It was apparent that they all knew each other, and were goofing around with each other a bit. Buddy Boy pretty much just inserted himself in the middle of the group and tried to start interacting with them. I couldn't hear what was being said, but then it appeared that (perhaps) they were engaging him and including him in their goofing around. Then I noticed a bit of shoving going on, and the next thing I know Buddy Boy's being shoved a bit forcefully by one of the kids. It turns out that after getting pushed lightly a bit, Buddy Boy kicked him in the groin below the surface of the water. I guess I'd be upset, too. By this time I could tell that something was definitely wrong, and Liz started towards that end of the pool to see what was up (I asked Liz to go, because there were a group of mothers down there, and I thought that perhaps a female touch would go over better than me going down there). Before she gets there the mom of the other boy is pointing at Buddy Boy and shouting that Buddy Boy kicked her son in his private parts (and of course the pool gets pretty quiet, and everyone turns to pay attention).
Buddy Boy, having been shoved a bit hard, comes out of the pool crying loudly. So now the other mother is starting to shout, and Buddy Boy is getting louder. Liz pulled the "A" card (you know, sometimes my son overreacts a little, he's autistic).
Amazingly, it worked. The other mother abruptly stopped, said she understood, and sat back down. We quieted Buddy Boy down, and the kids got back to playing in the water.
Liz says that this incident was pretty typical for Buddy Boy, when he doesn't have someone right by his side facilitating his interactions and intervening. I must admit that I haven't seen things escalate so quickly in the past (okay, maybe I have selective memory), but she sees him more at school, and interacts with his teachers more. Evidently stuff like this happens during recess at school on a fairly regular basis.
Liz and I talked, and we think it's because he just can't read the situation. He doesn't understand how groups of kids that already know each other don't necessarily want someone else to insert themselves into their group. He doesn't get their signals when they tell him to nicely get lost. He doesn't know the difference between gentle playfulness between close friends, and him being a stranger pushing just "that" much harder than they are (which then sets them off, to his surprise and dismay, which escalates his response).
We've tried explanations (which he doesn't want to listen to-"I KNOW"), we've tried a little role playing, which he also doesn't want to partake of. We coach ahead of time, and I always struggle with how far to let him go on his own. I don't want him to have bad experiences, but I also know that eventually he needs to learn to navigate on his own (and it does work, sometimes).
I blame myself for tonight. I should have recognized that the pool was much too crowded, the kids perhaps too tired, and me too lazy to change into a swimsuit and instead sat on the side. I wish I was a bit more like Emily.
Like many Americans, I watched President Obama talk about his health care plan on TV tonight. Many others will comment on the plan in general, but I want to point out what I think are some possible implications for care of the disabled.
First of all, FULL DISCLOSURE-***I am a DOCTOR***. Now I know in a lot of people's minds that immediately may make them tune out anything that I will say, assuming that whatever I say will be self serving. I happen to think that since I have worked continuously in health care in one job or another continuously for decades (yikes!) that I may just have some insights into a couple of things. Your mileage may vary.
Basically, on the surface, today's talk by the President promised that nearly everyone will be covered, you won't lose your present doctor or insurance choice, you'll get all the health care you need, and it won't cost you or the country any more money. Sounds great, right?
Well, anyone with a lick of sense knows that all of that can't be true. So let's look at one of the things that WAS said, and think about it's implications.
One of the things that has been advocated (and that the President heartily endorses) is some sort of a national group of "health care experts" that would determine what treatments should be covered. This group would be a "non-partisan" group in Washington, D.C. This is being sold as "We'll eliminate unnecessary treatment", but there have been no parameters floated saying exactly what kind of treatments they will eliminate in order to save money.
I suspect that some of them may be reasonable, such as requiring prescription of generic drugs when available (though there are several times when patients react badly to a generic, and not to a brand name). Also, undoubtedly, many services for senior citizens will be either delayed or denied. Such things as hip replacements and knee replacements, as well as cataract surgery. Criteria will be imposed, and if someone is judged either to be not debilitated enough, or not to have enough useful years left, then they will be left without service. No one in the administration will admit this, but all healthcare economists pretty much agree on this. This is certainly what happens in other countries that have nationalized their healthcare system.
Now the reason I bring this anonymous, faceless committee up is the effect they may have on the disabled. The whole concept of futility and futile care has been big in ethical circles of late, and this concept is sure to enter into any decisions made by such a committee.
The problem becomes when this central committee decides on what constitutes futile care for a particular person. Instead of a decision being made with the person themself, their doctor, and their family (if the patient cannot communicate), this central committee will make decisions as to whether a particular person's life is worth investing more health care dollars into.
I don't know about you, but I don't have much trust that such a committee won't have an inbred bias against the disabled. Society as a whole is biased against the disabled, but society as a whole up to now hasn't been able to out and out condemn individuals to die from lack of treatment. Such a committee will.
For those of you that will disagree with me, ask your legislator if he/she can guarantee you that no disabled person will be denied care based on their disability. They can't.
Also one last thought for tonight. The non-partisan Congressional Budget Office predicts that millions of Americans will be forced out of their present insurance plans by the institution of Obamacare, and force into the "public option". The most telling thing (IMO) regarding the public option is that both the House of Representatives, as well as the President himself tonight, refuse to include themselves in the public option. The President waffled tonight when asked whether he would submit himself to the same requirements as the public option. The House last week voted down an amendment to the health care bill which would have required House members to take the public option.
If they don't want that option for themselves, why is it good enough for millions of other Americans?
Basically, the child had lymphoma, got his initial chemotherapy, then was supposed to follow up with home chemotherapy and additional follow up appointments, many of which were supposedly missed. Now the tumor has recurred, and is more aggressive, and the child's chance of survival has gone from 90% to 10%.
To complicate the situation, in addition to the child being autistic, the parents are going thru what has been described as a "bitter divorce", where the father hasn't had recent contact with his son, but has now assumed custody.
Orac has a good post up on this, but I thought I'd add my take.
In ethics, one way of approaching problems where there is conflict is termed the "4 Principles" approach. The authors Beuchamp and Childress wrote a groundbreaking book on medical ethics in 1979, which is now in its fifth edition. In this book, the authors describe four principles that could be used to assist in deciding questions of medical ethics. The four principles are usually listed as "autonomy, beneficence, non-maleficence, and justice". A fairly good concise overview of these principles can be found here.
Although Beuchamp and Childress never argued that any one principle should be more important than any of the others, in American medicine and ethics circles autonomy has generally been held to be "first among equals". What this means is that, generally speaking, a competent adult has the right to refuse any treatment, even if doing so would kill them.
As children generally can't decide for themselves what is best for them (especially 8 year olds), their parents are usually given broad leeway in making decisions for them. Historically speaking, however, there are definite limits to this authority.
For instance, if a child needs a life saving blood transfusion but the parent's religion doesn't allow for any blood products, then it is routine in children's hospitals for emergency custody to be granted to someone appointed by the state, who will approve the transfusion. This case appears to be similar, but not totally identical, to the case of a blood transfusion. In this case, a relatively simple (but still with arguably potential serious side effects) was withheld from the child by the mother (according to the charges). The question is whether the mother should be able to act on her son's behalf and refuse treatment.
Before going further into this, let's go back to the other three principles.
Beneficence means doing the best thing for the patient. It would seem obvious that giving the child the chemotherapy would be the best thing. But each adult has the right to refuse treatment, even chemotherapy. And even with the chemotherapy, there would be a 10% chance of dying. A competent person might say that they would rather have a 10% chance of living, and not have to undergo the pain of needlesticks, the constant nausea, hair loss, weight loss, fatigue, etc. But certainly most people would choose to undergo all of these things in order to improve their chances of survival from 10% to 90%. And most of the time, although chemo is still chemo, outpatient follow up treatments generally have a lot less severe side effects than the initial inpatient treatment.
Although I often think of this Disney character when I hear the word, non-maleficence, what it actually refers to is not harming the patient. The second thing I think of (after the Disney character) is the medical aphorism "First, do no harm." Again, what we balance here is a large potential future harm (recurrence of the tumor, which is what in fact happened) against the immediate harm of undergoing treatment. Perhaps undergoing treatment for this autistic child was particularly difficult. Treatment may have included injections of chemotherapy into the spinal canal, and depending on whether they were willing to anesthetize the child for these, it might have been fairly traumatic (even undergoing anesthesia to have it done might be fairly traumatic). So it's not necessarily a total slam dunk when it comes to considering non-maleficence.
Finally there's justice, which basically means doing what's fair, as well as what's best for society as a whole. Society benefits from having healthy citizens. And most people would agree that all people deserve to get chemotherapy for a tumor. So I think that most would agree that justice would fall on the side of the child getting chemotherapy.
So what we are left with is questions of the mom's ability to speak for the child against the state's interest in having healthy citizens, and beneficence weighing heavily on treating the disease process, as the treatment is mostly safe, though it has some potential bad side effects.
I think that most people would treat their child in a situation such as this, which is why people are up in arms, and why charges have been filed. The mother may have a certain degree of ignorance regarding the risks involved, and may also not have a lot of support in her life at the moment (though I know that's no excuse). The father may or not be a "victim" in all this. He may share some of the blame for not picking up some of the slack, or may have been actively excluded by his wife. It's hard to tell from outside.
In the end it doesn't look forward for the child, but we can all hope for miracles. And I hope that the child's autism did not enter into the mom's equation of whether to withhold treatment or not.
Multiplication tables (as well as most other math facts) have been a hard go for Buddy Boy. His third grade class started on the "8's" and "9's" back in March, and he still hadn't gotten them down by the end of the school year. Liz worked with him, his teachers tried various strategies, but nothing seemed to work. Every time Buddy Boy had a problem, he had to stop and sequentially add things, or if he was able to remember a rule, he would take minutes to painstakingly work through it step by step.
So near the end of school Liz went searching for a new approach, and as soon as school was out, she was ready with some workbooks. Two of the books were variations on regular math workbooks, but one of them was decidedly different. This one, "Memorize in Minutes: The Times Tables" looked rather silly, and I didn't hold out much hope for it.
The book has silly pictures (complete with silly stories for each one) to teach the times tables. The times table above is "8 x 8 = 64", and down below it says "skate x skate = sticky floor". The accompanying story describes how two skaters went skating and got stuck to a sticky floor, which was covered with a gooey, sticky, substance. Huh? How was a series of stories going to get Buddy Boy to remember his multiplication tables? Even if he did, I figured it wouldn't save him any time over what he was already doing.
What couldn't be accomplished in months was virtually all memorized in a week. Buddy Boy and Liz worked their way through the "8's" and "9's" in a week, and are going back to some of the other numbers. Buddy Boy demonstrated his now fairly rapid firing off of various multiplication facts. It was truly amazing. What had before taken minutes now took about 2 seconds each. I was impressed.
So if you're having similar issues, this might be something you want to look at. The website's here. We paid for our book, and have no financial interest in this product. But I'm glad that someone thought "outside the box" on this one, and put this together.
Me- Joe, husband of a great wife, and dad to two great kids, who were both adopted at birth.
Liz- My ever understanding wife, who manages to wear many hats (mom, advocate, therapist, teacher) for our kids.
Buddy Boy- Born in 2000. Funny, intelligent, inventive, and autistic. Loves machines.
Sweet Pea- Born in 2002. Typical little sister. Competitive, outgoing, and smart. Loves anything pink.