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Chicken and Children

April 14, 2015 1 comment

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My neighbors caused quite a stir in the news. They allowed their two children (10 and 6) take a 1.2 mile walk along Georgia Avenue (known above the Beltway as Route 97) from a park in the upscale Woodside neighborhood to their home near downtown Silver Spring, Maryland. For doing this, they were investigated by Child Protective Services and found to have engaged in “unsubstantiated child neglect.” My neighbors, the Meitivs, are part of the so-called free-range parenting movement – a movement that focuses on promoting (as appropriate) a child’s independence and self-reliance. As one person said about the name for the movement, “I like my children like my chicken: free-range.” I understand that these children were picked up by police again this evening.

Free-range parenting sees itself as an antidote to the “helicopter parenting” style that seems to predominate today. A world where parents must sign a permission slip to have a child eat an oreo. I have heard stories from college professors that they are now being contacted by parents of their students to inquire about why they received a certain grade on an exam or a paper, and parents signing off on their child’s courses. So the proverbial helicopter now is hovering past the age of majority.

A number of friends have asked me what I think about the Meitivs decision – whether I think CPS should have gotten involved for letting their children walk home. They are often surprised when I say that while I would not have allowed my children, even if typically developing, do what they Meitivs kids did, I have no problem with it. The fact is that we simply can’t live in a world where we get to continually micromanage and judge the parenting decisions of others. While I would like to believe that people who believe CPS was necessary here are doing so out of a genuine feeling of concern, it is easy to see where that kind of “caring,” is, as the Shins say, creepy. Or even worse, interfering can be actually detrimental to the child.

I think friends ask my opinion because they know that parents of special needs children (particularly those with medical needs) have a special appreciation for this problem. While parents of “normal” children are allowed, in relative terms, a wide berth to raise their children, we are not. From the moment our child is born, the “system” micromanages every aspect of our lives — they obviously need to, because we could not even procreate a “normal” child, right?

One area where this sort of interference is most unwelcome is in the area of medical treatment. Nowhere is the denial that reasonable minds can differ about treatment, and sometimes diagnosis, more dangerous and toxic. Two recent examples of that were the arrest of the parents of a boy with rare brain caner who was removed, against medical advice, by his parents from a hospital and taken to Spain to undergo an “experimental” treatment. It just so turns out, that treatment may have saved him. Or a much more dramatic example is the horrible drama that unfolded for Justina Pelletier, a 14 year-old girl removed from her family because she was originally diagnosed with mitochondrial disease and sent to another institution for some adjunct treatment.  Once there, some new doctor developed the opinion that Justina was not really ill – she had a “somataform disorder,” which is a fancy way of saying it was all in her head. The doctors at the new hospital were so persuasive, Justina was removed from her family’s care, and they were not allowed to see her for almost a year until they raised sufficient money to hire a lawyer and fight back.

My husband and I have occasionally been pressured to do certain things or not do certain things for our children, and we have always governed ourselves according to our own convictions. Watching what is happening makes me wonder, though, if the day will come when someone has enough hubris to try and say that they know better than we do how to care for our children. Maybe that day is coming, or maybe it has already arrived and I haven’t really felt any deleterious effects from it, save being judged. What I do know is that “well meaning” people are often the ones who are the most dangerous and it is them I watch most closely, like a helicopter.

Hidden Compartments

April 10, 2013 Reply

There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy. – Hamlet

Friday afternoon was the first true Spring day. It was sunny, with a warm breeze and I wished I could goof off and enjoy it when I got into my car around noon. But more serious business awaited – I had a meeting at my son’s school to talk about educational evaluations, so I tried to enjoy it by rolling down the windows and turning on the radio on the drive over.

The meeting was like many others. A lot of subtext and undercurrent, various agendas moving this way and that. One of the administrators present told us she was concerned that Ryan was falling behind his peers, specifically in Social Studies and Science. She wondered (aloud) if that was because of a “cognitive problem,” (read: incapable of being taught) and if, therefore, he belonged in a program with fewer demands (read: the most expensive baby-sitting the state can buy). Hence, the tests. I droned on about the lack of credence that can be placed in these things. At least one person on the team agreed with me. To be fair, I think there was some basis for the concerns, but our son is complex. Those who know him well know that he is secretive, with hidden currents that flow under the surface. There is much that he knows but ordinarily leaves unspoken.

When I was studying for my EMT license, one of the things the instructors drilled into us was the importance of evaluating whether trauma patients had palpable pulses, normal sensation and normal motor responses in their limbs (particularly in an injured limb). On every flow sheet there was a reminder: “Did you check pulse/motor/sensory?” I was terrible at finding one of the pulses in the feet – the posterior tibial pulse – I fretted and worried that I would fail my trauma exam, so I practiced on everyone in my family and in class, hunting around for that mysterious pulse that is nestled behind the ankle bone.

Our EMS textbook admonished us to heed the warning of a person with recent trauma and diminished pulses in the affected limbs. Such a disappearance, our textbook warned us, was a sign of Compartment Syndrome, “which is a medical emergency requiring an immediate upgrade to Priority 1 status for all patients.” What was this mysterious syndrome? Our instructor talked about it briefly, but did not dwell on it. There was a limited space between the muscle and the fascia layer, he told us, and if swelling or bleeding exceeded the capacity of that space, bad things started to happen. He also told us it was rare and we would probably never see it.

Until Saturday, that was the sum and substance of my knowledge of Compartment Syndrome. That is, of course, until an out of breath resident came running up the stairs from where my son was in the OR, having his broken tibia set, and informed us that there was a problem….pressure in the compartment…..fasciotomy…..incision….closing difficult with swelling….keep him in a medically-induced coma until we can achieve closure…..

Ryan’s compartments in his leg had swollen with blood from the fracture. Shards of bone had lodged into his muscle and tissue and he had slowly been bleeding into the space, so by the time they got him in the OR to reduce and set the fracture, his leg was pale and pulseless, just as my flow sheet warned. It is important to understand that this was an inevitable consequence of the fracture he sustained. What was not inevitable was how long it went undetected, which is, unfortunately, an indeterminate length of time. We need to wake Ryan up to know for sure what he feels and can do with this leg, and that might not be evident for some time. Before he went to the OR, our ordinarily secretive and uncommunicative boy was almost poetic in his expression.

“Mom, when the swing broke, I was flying through the air for a minute, like a pilot. But I was a pilot without an airplane, so I crashed.”

“That’s an interesting way to look at it, honey. Next time make sure you bring your plane with you, please.”

Our boy, who some believe has fallen far behind even his developmentally disabled peers, has some hidden compartments, and they are not in his leg.  In the ambulance, he asked me, “am I going to die?”

“Of course not honey,” I soothed, not realizing the events of the next 36 hours might bring us slightly closer to that prospect than I ever could have imagined. “Why would you think that?”

“Because I saw this man on the news, and he fell jumping into the pool. He hit the edge of the pool and he broke his backbone. He almost died. He’s in a wheelchair now.”

And I thought he watched the news every morning for the weather report. Of course, he hasn’t — he’s been absorbing it all, the stories he has seen, secreting it away inside. I wonder what the school administrator would think, if she could see him as he truly is, if she could see what I see.

I can’t wait to see him again.

AT ANY COST

June 4, 2012 Reply

A few months ago, I was sitting in bar with some acquaintances in my profession. It was late and we’d all had a bit to drink, when somehow the conversation turned to health care reform. Yes, we were and are on dangerous ground, but you knew I was going to get political at some point, right?

The Supreme Court had just heard argument in the various cases involving the The Patient Protection and Affordable Care Act. Everyone was talking about the “mandate” provision. You know, the one that mandates everyone have health insurance or pay a penalty (or a tax, depending upon which side of the argument you are on). One of the women sitting at the table was a relatively young and seemingly healthy person. She said, “I don’t understand. If someone is healthy and they don’t want to buy health insurance, why should they be forced to buy it?”

I can’t believe that there are people that are supposedly intelligent and educated that seriously believe that. You may be healthy now, but God forbid, if you are ever hit by a bus, I don’t think you will be so healthy then. And who will have to foot the bill for you? We [read: the rest of us] will, and it’s because you could never pay back what it cost to take care of you, even if you turned over every dollar you made for the rest of your shortened and severely limited life. The only way you can credibly take that position is if you will give me permission, when you are hit by the bus, to step over your prone and dying body on the ground.

That was not my inside voice. I actually let that one out. I probably should not have been so biting, but I take this issue very personally. Every time someone tells me that they should not have to buy health insurance and pay for all the sick and fat people, it is equivalent to telling me, “I don’t care what happens to your children. I hope they die.” If you think that’s an extreme point of view, I’d encourage you to think about it again – my children are uninsurable in the private market. If my husband and I were to become unemployed or die, they would need to live on Medicaid to survive. If you think that’s adequate health care coverage, I suggest you give up. I can’t help you.

The great irony of all of this, of course, is the mandate provision was the result of heavy-duty lobbying by the insurance industry. If they were going to be forced to pick up every adult with diabetes or child with autism, they wanted insurance against the phenomenon known as adverse selection. People like my uninformed colleague, who don’t purchase health insurance until they are sick, could leave the insurance companies with a high-risk pool that is rapidly depleted because premiums can never compete with claims.

This is the only time you probably will ever hear me say this, but the insurance lobby was right. They need the mandate and it’s only fair to them. After all, in the present system, we pay for the uninsured anyway. Those without insurance call 911, and get a ride to the one place where they are not allowed to be dumped onto the street without being stabilized – the emergency room.

Me: How can we help you today ma’am.
Pt: Well, my sugar is 642 and I need some insulin. But I don’t have enough money to get my insulin and I need a ride to the hospital.
Me: Off we go, then [gestures toward the ambulance].

This happens quite frequently. And this is the most expensive way imaginable to administer care to the uninsured. When they can’t pay, the hospital simply passes the cost on to you and me. So the next time you get a hospital bill and the Tylenol is $28, you know why.

Pundits are now speculating the Supreme Court’s opinion will be out by the end of the week and we will learn whether there is likely to be real health care reform in this country. I actually am not a fan of the Affordable Care Act. I would have wanted a single-payor system, but I recognize that it was the result of necessary compromise and it is better than what we had. Regardless of your political persuasion, I think we can all agree that we need reform in this country. If you think the current system works just fine, spend some time in any U.S. emergency room and I think it will persuade you otherwise.

But if that still doesn’t persuade you, consider the following statistics about our health care system.

The United States spent more than the entire GDP of Great Britain on health care in 2009. CMS Report Says Health Care Spending Was 17.3% of GDP in 2009 | Swampland | TIME.com.

The United States’ infant mortality rate is higher than in Cuba, the EU, Japan and we are right behind Croatia. CIA – The World Factbook.

A 2009 study revealed nearly 1 in 4 Californians under age 65 has no health insurance. No Health Insurance California | About 1 in 4 in California lack health insurance, a UCLA study finds – Los Angeles Times.

Problems in claims processing cost the U.S. approximately $210 billion year.

And the list goes on and on. Still not convinced? Ok, that’s fine. If you could just sign this document that says if you have an accident, we can just skip past you in favor of the guy who paid $100/month for health insurance coverage . . . .

Think about it.