Crisis Management

It seems like, for the past few weeks, we've been jumping from crisis to crisis.  Danielle has exploded at home and at school, we've been struggling with finding the right help, we had to fire our pediatrician, and we've had to deal with biological family emergencies.

Yesterday, we spent a good chunk of the day resolving some major financial drama.  A small fraudulent transaction which started on an online music retailer's site ended up sucking money out of a popular online payment service's account, which in turn slurped cash out of one of our business'  accounts.  The day ended up largely wasted while we called and e-mailed different companies.  Finally, to prevent any more money from disappearing, we closed the affected checking account.

Ugh, drama.

It wasn't a lot of money, but obviously once the fraud was discovered we had to do something to prevent it from cascading into pure chaos.  In the end, I think we'll get everything back, because we discovered and reported the problem right away.

I'm not sure why so much drama keeps heading our way, but this morning I was nearly sucked into another situation.  This time, I was tapped by an acquaintance to help with a mess she could have  completely avoided, if she'd only listened to a service provider and scheduled an appointment for a mutually convenient time.

What is it with people?  Why is it they insist on making choices that lead to completely artificial emergencies?

I want to scream out to the universe, "Look before you leap, people!"

I ended up mostly declining to involve myself in my acquaintance's drama. I had been asked to do something that I can do, but don't feel comfortable doing, during a time that conflicted with today's work schedule.  I declined, but did make a few phone calls on my friend's behalf, though it didn't result in the help she needed.  She needed to reschedule her plans, and she didn't.

Now I'm not without heart.  I felt crappy when I said "no" to Danielle's birth family member and I felt crappy when I said "no" to my acquaintance.  I am willing to help people within reasonable limits, but I also feel like it's important to maintain some healthy boundaries.

Loaning out money to near strangers, or walking out on my job on short-notice for a few hours don't seem reasonable when both of these crises could have been completely avoided with just a little bit of planning.

I know the decisions I made in both of these situations were the right ones, but I still feel kind of crummy.  The truth is, I can't be all things to all people.  Even during easy times in my life I can't say "yes" to every request that's made of me.

But now, when I feel like I am jumping from crisis to crisis within my own family, I don't have the energy to get sucked into other people's drama.  Right now, I feel like I am swimming as hard as I can to keep my own head above water, and I can tell that my life-jacket is starting to become waterlogged.

I do care about the world and other people, but when I'm drowning, I don't know how I can help anyone else.

Answer: We Don't Lend Money to Birth Family

As I'm sure you gathered from Sunday's question, we were asked to loan one of Danielle's birth family members some money.

We said no.

Even before all the comments came in giving me good reasons to support that answer, I had considered quite a few on my own:

• We had loaned this person a much smaller amount of money in the past, and it was never repaid.
• I didn't want to set up a precedent establishing us as the bank of Abba v'Eema.
• We didn't want to get sucked into what was surely going to be a bunch of early morning drama.

Even though there were plenty of good reasons for no, I have to admit to feeling pretty crappy about it.  The details we were told Sunday morning were somewhat hazy, and it sounded like this birth family member had really been stranded, and had gotten into a bad situation as a result.  As the story was told to us, the person in question was facing a pretty horrible consequence, all for a lack of planning aforethought and a relatively small (though not insignificant) number of dollars.

I felt like a real skunk.

Later Sunday night, we heard from Danielle's family member, and it seems everything turned out okay. The immediate need for the money has been deferred a few days, so this person will be able to cover the bill.  As long as the money is paid by this deadline, nothing terrible will happen.

So the situation resolved itself in a way that didn't require our wallet.  That made me happy.

Once we heard more of what lead up to the crisis, it made me even happier that we hadn't decided to proceed with the loan.  Initially, it sounded like a situation created by poor planning and being left stranded by a friend.  After hearing more details, we realized that the situation was both of those things, but was a result of a plan that shouldn't have been executed in the first place.

Now the story we've been told reminds me a lot of the things Danielle tells us.  The plot twists and turns, the details change, and we are left confused and with more questions than we had in the beginning.  It feels like the foundation of the tale is built upon the shifting sands of the Sahara Desert.  In the end, we don't know if we have the truth or not, though it probably doesn't matter.

This video clip from the movie Meet the Robinsons pretty well sums up the situation in its entirety:



Sigh.

What makes this situation feel a lot more complicated is the fact that the person involved isn't an older relative who should know better.  This person is a young adult who has gone through most, if not all, of the negative experiences Danielle has.  Unfortunately, this person was bounced through the foster care system, and has received every disadvantage that could possibly come from it.  Unlike Danielle, this relative wasn't "lucky" enough to find a "forever family."

Now I put the words "lucky" and "forever family" in quotes, because I don't believe that kids are lucky when they are adopted.  Neither do I believe that an adopted family is necessarily a forever family, because the phrase completely discounts the existence of the birth family, and it isn't always true.  If a child is adopted and returns of her own volition to her biological family, was the adoptive family a forever family?  I'd argue not.

But I digress.  The real issue that makes this so difficult is being in the strange position of being parents to one child, but not to another.  It's very odd to be parents to one kid, who is closely related to a young adult, but having had no input into the care, custody, or control of that young adult.

So we find ourselves in the odd position of being related, yet not, to someone who we don't really know.  It's clear they could use some help, but we have no legal or emotional ties.  We don't want our child to witness this person's imploding life, but we don't feel comfortable providing financial aid or housing to someone who isn't really part of our family.

We care, but it just feels complicated.

I've of course asked myself the question, "would I help my niece, nephew or child in a similar circumstance?"  The answer is probably not, because the entire situation could have been avoided with a little planning ahead.

Maybe the real answer is that the situation needed to unfold as it did to be a lesson in natural consequences.  It certainly provides a strong lesson in, if you don't plan ahead and you don't have a solid backup plan, then bad things most certainly will happen.

I hate to watch someone fall on their face.  I also realize that it is important to have boundaries, and just because someone asks me to loan them money to get out of a jam, doesn't mean it is a good idea.

Even so, it didn't entirely stop me from feeling bad.

Question: Do You Lend Money to Your Child's Birth Family?

If you were faced with the following hypothetical situation, what would you do?

It is early in the morning.  Your telephone rings, rousing you from a deep sleep.  It is a member of your child's birth family calling.  This person has made a mistake, a really stupid error in judgment, largely due to extremely poor planning.  They are now faced with the possibility of a very unpleasant and negative consequence.  The person is frantic, hysterical, and in tears.  You are begged for what is a relatively small, but not insignificant, amount of money to make the problem go away.

What do you do?  Do you get dressed, get in your car, and buy your child's family member out of trouble?

Would it make a difference if you had loaned this person a small amount money in the past and they failed to pay you back?

Would your answer be any different if you knew that the dollar amount involved now was at least six times higher than it would have been if they had called you at the beginning of the trouble, instead of waiting until the very end of the crisis?

We Fired the Pediatrician

A lot has happened since Danielle's most recent explosions at home and at school,  A lot of it, I'm not going to share publicly, because it's complicated and messy, and for the entire story to make sense, we'd have to share a lot of personally identifying information, which I am not prepared to do at this point.  What I will say is that it has involved talking to a lot of people, including school staff, therapists, law enforcement, the crisis hotline, Danielle's pediatrician and even an attorney.

They all say the same thing.  They all give us a list of what we (and they) can't do.  The list is very long and complicated, but if we break it down into its most basic components, it boils down to two things:

1. We can't get Danielle the help that she needs.
2. We can't give custody to someone else -- not to the county, not to another foster home, not even to another adoptive home.  We are stuck.

Everybody agrees that this situation is intolerable and unsafe.  They agree that nobody should have to live this way.  They agree that this isn't good for any of us.  Danielle's explosions are violent and dangerous; her behavior is completely unacceptable.

Yet, they all come back with pretty much the same answer:  There isn't much we can do.

Sure, some of the people we've talked to have agreed to help, but the help they can provide is very, very limited.  Danielle recently qualified for one-on-one therapy that will be provided, at school, by a licensed therapist.  That's great, but it's only for a single hour per week.

I feel like we are trying to sop up the ocean with a single sheet of paper towel.

Several of the mental health professionals we've talked with have been surprised by Danielle's relative lack of medication.  All have recommended that her doctor re-examine her pharmacological interventions.  We sent the pediatrician a formal request for a referral to a psychiatrist, and she responded by screaming at us.

Yes.  She called us up and screamed at us.

Even though we were warned by our current family therapist that firing our pediatrician would result in her counseling services being terminated, this was the last straw.  This was not the first time, or even the second time, that this doctor had unleashed a heap of verbal abuse upon us.  Once, she even screamed at us for taking Danielle to the ER when we thought she might have broken her foot.  Why was she so angry?  Apparently, we were supposed to obtain pre-authorization for an ER visit, which we hadn't done.  We weren't aware of this requirement, but the doctor felt it necessary to yell so loudly that hospital staff looked on with sympathy and rolled their eyes.

I hope the next pediatrician will be more helpful.  If not, perhaps I can at least hope that she won't scream at us for trying to get our kid the medical treatment she needs.

As for our current therapist, I hope that our change in pediatricians won't create an unfortunate cascade of events.  At this point, though, it's clear we need to try a different approach.  Our fired pediatrician had a reputation for being difficult, obstinate and disagreeable, but we were told she was a competent professional.  Our experience proved otherwise.  Her tendency to scream at us, combined with the fact that she would forget important details between visits and deny we'd ever discussed them, finally made us pull the plug.

Here's to hoping that the next doctor will be more willing to listen, and to help.

The GLBT Agenda

Last week, Christine over at Welcome to my Brain wrote a really great post about the GLBT agenda.  I've been meaning to draw attention to it for a week now, but haven't been able to because I've had a lot else going on.

In her post, she talks about making a stand for the rights of gay, lesbian, bisexual, and transgendered people.

Go read it.

Please.

http://www.welcometomybrain.net/2012/01/theater-of-absurd.html

It made me cry.

And the Story Changes Again

It is so frustrating, sometimes, to try and get information from Danielle.

She has told us three slightly different versions of the story:

1. The boy ratted her out.
2. Danielle confessed that she'd kicked the boy.
3. The boy ratted Danielle out during group.

At the end of the day, I guess it doesn't really matter how the situation came to the attention of her teacher.

Here's what we think happened:

1. The boy was annoying Danielle.
2. She claims she repeatedly asked him to stop.
3. He didn't stop.
4. Another student asked him to stop.
5. He didn't stop.
6. Danielle responded by kicking him, hard, in the groin.  This was, according to her teacher, not horseplay, but a real attempt to injure.
7. The boy revealed this in a group session.

Although I understand that group sessions need to remain confidential, I take issue with the school staff failing to contact us when violent behavior on the part of our child has been brought to their attention.

It is absolutely not my business when another child discusses his personal problems.  It is my business when another child accuses, and Danielle admits, that she has been violent.

Frustrating.

I have to admit to being more than a little concerned about the school's lack of communication.  It seems that each time there is an incident involving my kid at school, we usually don't hear from the school.  Instead, Danielle comes home with an angry and confusing tale, and we end up having to contact the school to try to piece together what really happened.

I Kicked a Boy

Monday morning, we got a call from Danielle's teacher.  She had received our e-mail regarding the kicking incident, and wanted to respond.

Apparently, things unfolded a little differently than the way our child described.  She actually confessed to the behavior during a group session, which is why the school hadn't notified us. Apparently, whatever is said in group, stays in group.

The teacher reported that staff didn't witness the violence, but did confirm that she'd told Danielle that if the behavior happens again, she'll face an unpleasant consequence.

As if the threat of a consequence has ever been enough to stop her in the past.

Inflammation (Updated)

Earlier this morning, Danielle went to the dentist to get her remaining cavities filled.  The appointment had to be rescheduled until next month.

Why?

The dentist noticed that her wisdom teeth incisions were extremely inflamed, and hadn't really started to heal.  Therefore, he decided that he really didn't want to go rooting around in her mouth with a drill at this point in time.

FosterEema explained that Danielle had refused to follow many of the oral surgeon's post-procedure instructions, and asked if that could be the cause of the inflammation.

Although the dentist didn't confirm with 100% certainty that her lack of self-care was the cause, he said he couldn't deny that it may have contributed to the problem.

When I heard this news, I just put my head down on my desk and sighed.

* * *

Updated to add:

When Danielle came home from school this afternoon I asked her about her dental appointment.  Apparently, her dentist gave her a bit of a scolding.

"Naughty, naughty!" Danielle reported the dentist had told her.

He clearly left her with the impression that she was the cause of her own misery.

She reported that he'd said, "You would have a lot less swelling and pain if you had followed [the oral surgeon's] instructions."

"I know," she replied.

When I heard this, I just put my head in my hands, shook my head and sighed.

The fact that Danielle won't follow instructions given by her medical care providers saddens me.  If she's not able or willing to follow directions, I think it's going to make her life a lot more difficult than it needs to be.

Whether or not Danielle's lack of follow-up care contributed to her extra swelling and pain is really immaterial.  The fact is, she defied her surgeon's instructions, and that's pretty troubling stuff.  Doctors don't issue follow-up care instructions because they are fun, they issue them because their education and experience has taught them that specific aftercare helps to speed healing and reduce pain.

Curious, I asked her the predictable question, "Why was it so important to you to go against what [the oral surgeon] told you?"

Her answer was equally predictable.  "I don't know," she replied.

Violent at School, Too

Danielle just told us that, unbeknownst to us, she has been violent at school. On Friday, she kicked a male student in the groin because he was annoying her.

This is not the first time she has done this, she reports, though it is the first time she has been ratted out.

I will be interested to know what the school has to say when we talk to them Monday.

Not Following Instructions = Pain

This morning I find myself shaking my head.

Earlier this week, Danielle had to have two of her wisdom teeth extracted. Her oral surgeon gave her a detailed set of instructions, which included instructions for ice, mouth care, and the types of foods that should and should not be eaten. FosterEema carefully explained those instructions, and even offered up reminders of what Danielle needed to do, but Danielle declared those instructions "stupid" and opted to do her own thing. We decided that we weren't prepared to get into a knock-down, drag-out fight over her aftercare, so we let it drop.

Predictably, she is now suffering from more swelling and post-procedure pain than she otherwise would have. Just a few minutes ago, she stomped off to her room. She is angry at us because she chose not to follow instructions.

I guess I must be incredibly stupid. I fail to see how her decision to ignore her doctor's written instructions is our fault.

Tank Needs Help (Updated w/Picture)

Do you like dogs?

How about big dogs?

How about tank-sized dogs?

Tank is a young 105-pound Mastiff/American Bulldog mix who has been crippled by an OCD lesion in his left stifle, hip dysplasia and arthritis.  His Momma is trying to raise money for surgery that will improve his qualify of life.  This is his seventh very expensive surgery, so his family really could use some financial help.

If you want to help this adorable lug of a dog, or if you've already donated and want to see how he's doing, please visit:

http://raisingtank.wordpress.com/

The Frustrations with the System

We are still reeling from our recent conversation with a former county employee.  This conversation was not the first one we've had with people.  During our protracted legal fight, an insider flat-out told us the central issue was discrimination.  We've had three other professionals, who were also involved in the case, tell us the exact same thing.

No, I'm not making things up, or drumming up conspiracy theories because I'm a dissatisfied customer.  This is real.  It happened.  What makes the situation all the more disgusting is that our county has decided to throw a kid under the proverbial bus because they want to prove a narrow-minded, bigoted point.

What made this most recent conversation so shocking was that it didn't just confirm what we already knew.  It included details, names, what was done, and what was said.

Could we use this to take legal action? Probably.

The real question is, "Do we want to?"

It's very easy to say, "Go sue those bastards."

It's another thing to actually do it.

Civil rights lawsuits are rarely easy.  They take a lot of time and a lot of money.  When we were still in the middle of our custody fight, we used the interesting coincidence of the six degrees of separation, to speak with a lawyer who works with a well-known civil rights attorney.  We were told it wasn't a question of whether or not we had a case, as we clearly did.  It was really about whether or not we had the mettle to spend the next ten years tied up in court.

After spending time fighting over what was, in the global scheme of things, a small issue, I don't think that we are the ones to carry the banner for a civil rights lawsuit.  The time we spent fighting was emotionally, physically, and financially draining, and I can't imagine spending the next decade of my life tied up in court.

Does the issue matter?  Yes, it does.  Does our county exhibit a pattern of conduct that discriminates against GLBT families and single parents?  Yes, they do.  Are we the ones to challenge those policies and practices?  No, we aren't.

At some point we may very well name names and go public with what has happened to us.  But now is not that time.  Now is the time to try to get our kid the services and help that she needs.

Frankly, I am not sure that it will  happen, because there are several problems with the system.  After what we were told, it's clear that the people in the position to help are deliberately minimizing the problems our child is having and ignoring our requests for help.  They claim that all of this is because of money, but the reality is, budget or no, this adoption was a contract.  We agreed to take care of a child, and in consideration for that, the county was to provide certain things.  Whether or not you agree with the idea of adoption assistance programs, the fact is that our county agreed to provide it.

They are trying to renege on a contract, and that's not cool.  Their discriminatory reasons behind it, and their desire to see us fail, is unconscionable.

But it's not just the powers-that-be who are responsible.  There's a lot of buck-passing that goes on between agencies.  We call law enforcement, and they say it's a mental health issue.  We call mental health, and they say it's a law enforcement issue.  We are told to contact agency x, only to have them tell us to contact agency y, who in turn tell us that they can't help us and we should go back to agency x, as it's really their department.

Frustrating.

At the end of all of this, we have a violent child who the police won't arrest, the mental health people won't help, the probation office won't supervise, and the doctor won't appropriately medicate.  This is a problem.  In the meantime, our property is damaged, and no one is safe.

In fairness, I also think that there is some ego getting in the way of things, too.  On the medical front, Danielle's pediatrician denied us access to a psychiatrist, saying that she would agree to provide medication.  After she made that decision, believing that she knew best for her patient, she refused to prescribe anything.  It wasn't until Danielle exploded while away at respite (and staying with a well-respected family) that the doctor finally whipped out her pad.  Danielle has been on a low dose of a popular (and inexpensive) anti-depressant for about five months now, and it hasn't solved the problem.

We've asked the pediatrician to reconsider Danielle's medication, and each time we've done so, her reply has been, "No change in medication is warranted at this time."

Really?  When a kid explodes and threatens her parents with weapons, a change in medication isn't warranted?

After Danielle's most recent explosion, we have sent a formal, written request to the pediatrician, people in mental health services and the school asking that our child be referred to a psychiatrist.

We'll see where this goes.

The real shame here is that our county, in denying the help this kid desperately needs, isn't really hurting us.  Sure, we are getting beat up and threatened by an out-of-control kid, and it is dangerous, but in a couple of years, she'll turn 18.  If she's still violent, we will put her out of the house.  As terrible as it sounds, we don't owe our daughter a living once she's an adult, especially if she is abusing us.  So it's not us who are really affected.  Sure our lives are miserable and frustrating now, but it's the kid who is really going to suffer.  She's the one who pays, because the county isn't stepping up to their obligations.  She's the one with mental illness who won't be qualified to receive supportive services as an adult, because she hasn't been qualified for county programs as a juvenile.

We adopted this kid with the understanding that we were to receive assistance.  Come on, county, keep your promises!

Although I have felt for a long time that Danielle's repeated physical violence makes this situation untenable, now that she has twice threatened us with weapons, this goes far beyond that.  We have an appointment with an attorney soon to discuss our immediate options, and we'll see where it goes from there.

Some of my Internet critics have said that Danielle's behavior is our fault, and blame her explosions on us.  Let's suppose for the moment that they are right, even though I absolutely disagree.  Let's just say for the sake of argument that we are the worst parents in the world.  Even if that were true, the child still needs help.  She is unwilling to control her anger, and responds to normal daily life frustrations with rages.  We aren't the ones forcing weapons into her hands.  In both cases where's she's made threats, we were in a different room when she chose to arm herself.  Both times she went into another part of the house, found something she felt would be an adequate weapon, and then sought out a confrontation.

(And yes, we've since locked up things like knives and scissors, but I don't believe it puts a definitive end to the threat.)

Yes, we absolutely signed up to parent a tough kid, but we didn't sign up to be physically abused by one.  Now that we've twice crossed the threshold into threats involving weapons, it's time for something to change.  Danielle's pattern of violence started years ago, first with threats of hitting, and then eventually following through.  I have no doubt in my mind, since she's threatening harm with weapons, that she will eventually use a weapon to hurt someone.

I didn't sign up to be murdered at the hands of my child.

Gobsmacked

Recently, I had a lengthy conversation with someone who was formerly employed by our County.  This person confirmed, without question, that the problems we had in finalizing our daughter's adoption were deliberate, and that the problems we are currently having in obtaining appropriate mental health services for our child are also deliberate.

The motivation for all of this?

It is because we are a GLBT family.

Our county, it seems, wants to see us fail.

They want us to fail, because then they can point their fingers to us in blame, and use as an example.  "This is why we don't want GLBT families to adopt," they will say.

There is a whole lot more that I wish I could share publicly.  I am choosing not to, at least for now, because I need time to think about the implications of what was said.  I need to think about what it means for our family, and what we should do about it.

The details are so ugly and shocking that I am having a hard time getting my head around them.  It is clear that our situation wasn't caused by your garden-variety dislike of queers.  No, this was powered by homophobia so strong it bordered on psychosis.  Some of the things that were said and done were so irrational, so unreasonable, and so unfair, it is unfathomable.  Worse, these actions on the part so-called "professionals" didn't just affect us; they affected people that we love and care about, simply because we were friends.

I am gobsmacked.

More Thoughts on Amelia Rivera

As is usually the case in Internet stories that go viral, Amelia Rivera's case is somewhat more complicated what I first thought.  Apparently, her family plans to use a live donor that they will recruit, which makes the situation appear much different.

Still, there is the problem that adult kidneys cannot be used in small children, so Amelia's donor would have to be a child.  I think there are some serious ethical and moral considerations that come into play when one is considering harvesting a kidney from a live child.

Yahoo news reported the following AP copy:

The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics. For example, the blog notes that Chrissy Rivera told the hospital that "we plan on donating" the kidney because they come from a large family.

"Most adults can't donate an organ because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."

Although the issues brought to light in yesterday's news coverage change the picture a little bit, I still stand by what I said the day before yesterday.

Regardless of whether or not the living donor is a child, there is still, of course the ethical questions that are raised in terms of resources.  Even if the donor is a relative and the family funds the procedure themselves, will Amelia's surgery, post-operative care, and lifelong maintenance prevent a healthier, and cognitively normal child from receiving care?

Should it even matter?

I don't know all the answers, and I'm actually glad that Amelia's story went viral, because these are questions that deserve to be asked of the public conscience.  Granted, these are issues that are debated by the highest level of religious leaders and ethicists, and there are no easy answers.

Once again, I am hugely grateful that this is a decision I don't have to make.

On Strike

I am voicing my support for today's Internet strike.

If you don't know what it's about, please visit: http://sopastrike.com/strike/

Thoughts on the Rationing of Healthcare

This post is about a very complex and emotional issue.  Before you leave a comment, please read my entire post with care.  I am not advocating for a particular outcome, so much as I am trying to recognize all the complex and varying viewpoints.

A number of bloggers I follow and respect have written about how Children's Hospital of Philadelphia denied a child a kidney transplant because she is mentally retarded:

[The doctor] says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.

I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”

The overwhelming consensus seems to be that this decision is terrible, unethical and unfair.

I will wholeheartedly agree that it is terrible.  My heart goes out to this family.  I can't imagine what they have been through.

I just can't.

I can't imagine what it must be like to be told that your unborn child will come into this world profoundly disabled.  I can't know what it is like to sit in the NICU, praying your baby will live, and then rejoicing when she does.  I can't know what it is like to struggle with the many needs of a medically-fragile child, praying for miracles on a daily basis.

I can't imagine being told that a child I loved deeply, with all my heart, might die because she cannot have life-saving medical treatment.  I can't fathom what it would be like to know that the treatment is just out of reach.  If only...

...if only the child were normal.

I can't imagine the shock, grief, anger, and heartbreak.

There are no words to describe this.

At the same time, however, I recognize that our medical system rations healthcare.

Rationed healthcare?  Is that fair?

Fair in this case depends a lot on how you view medical services.  If you see them as a professional service, then they must be bought and paid for.  If you see them as a fundamental right, then everybody should get whatever treatment they need. There are problems with both of these viewpoints.

If medical care should be treated like a professional service, then rationing is inevitable.  For low- or middle-income families that do not have health insurance, rationing becomes part of daily life.  Adults ask themselves, "Is my child's cold just a cold, or is it something more serious?  Can we avoid going to the medical center this time?  Why not wait a day and see if Junior is better?"

If a family does have insurance, medical care is still rationed, only those decisions are made by the health insurance company.  They determine co-pays, what they will and will not cover, and how much they will spend on an individual or family.  They set limits, and though those limits may not be popular, they help to control what an individual, family or group pays for insurance.

After all, insurance simply spreads the cost of everyone's healthcare across a large group.  The premiums are set using statistical analysis, assuming that for any given pool of people, a certain percentage will need medical care, and a certain percentage will not.

Insurance companies must set limits on what they will pay, or a few really sick people could bankrupt the system for the entire group.

If you look at healthcare as a fundamental right, then everyone should receive treatment.  The problem, of course, is that doctors, laboratories, and hospitals still cost money.  I don't know too many professionals who are willing to give unlimited amounts of their time and services away for free, so someone has to pay them.  In the case of public healthcare, that someone is the government, which is funded by the taxpayers.

The question then becomes how much is everyone willing to pay for healthcare?

It's a tough question, and it's certainly one that's created a lot of political strife in the United States.  Whether you are for President Obama's healthcare system or not, the debate has brought the skyrocketing costs of healthcare to the forefront.

Going back to little Amelia for the moment, hers is a difficult problem.  I can understand why an insurance pool (whether publicly or privately funded) wouldn't want to pay for her transplant.  By paying for that transplant, they will give her a few more years of life, which is a good thing if you believe in the sanctity of life.  From a strictly economic perspective, however, it doesn't make sense.  By extending her life, the insurance pool guarantees they will have to pay for her substantial medical needs for a longer period of time.  I can understand why a bean counter somewhere might have a problem with extending the life of someone who is likely to cost more than the family would ever pay in premiums.

This is terrible to thing to consider.  How can you put a price on life?

Let's suppose the family isn't going to rely on any type of insurance to cover the cost of the transplant.  Suppose they plan to raise all the money (the estimated cost for a kidney transplant is $262,900) and the cost to an insurance pool isn't a factor?

I can still see why a doctor might deny the transplant.

What if there was only one available kidney, but two perfect matches?  One match is little Amelia, and the other is a child who is developing normally.  Who gets the transplant?  Who deserves it? Little Amelia isn't likely to live a normal lifespan.  She will never hold down a real job or live independently.  The other child has a chance at a normal, productive and healthy life.

Who lives?  Who dies?  How does someone even make these types of decisions?

Although we would like to think that our society is perfect, just, and all lives are equally valuable, the reality is that this is not true.  We've seen this throughout history.  There are the haves and the have-nots.  There are the masters and the slaves.  There are the rich and the poor.  There will always be people in our society who have more of something, whether it be money, smarts, skills or good looks. Life isn't fair.

Advocates for social justice want to level the playing field, but I think even the most ardent realize that there is an innate unfairness to the world.  We aren't all the same.  We are all unique, and have different strengths and weaknesses.  Some children are born geniuses.  Others, sadly, are born intellectually disabled.

Our country has finite medical resources.  There are a limited number of doctors, hospitals, surgery beds, money and kidneys.  There aren't enough organs for everyone who wants or needs a transplant, and sometimes hard choices have to be made.

So when I think about all these things, I can understand why a doctor would consider quality of life issues.  If there is only one kidney, and it could go to someone who will lead a full, healthy and productive life, or it could go to someone who likely will die young, have other medical issues, and  never live independently, I can see the logic in the system favoring one child over another.

The truth is, rationing decisions aren't made only on life or death situations like Amelia's.  Our county has been rationing mental health care for years, and the results are painful.  Of the three foster kids that stayed in our home, all would have benefited from skilled mental health care.  To save money, our county hired inexperienced interns to handle individual and family therapy, and I think it has resulted in less than stellar outcomes.  I truly believe that if our daughter had received quality care from the beginning, instead of the system waiting for a crisis, slapping a band-aid on it, and then waiting for the next crisis, she would be doing much better now.  Had her therapists and pediatricians been willing to give her medication sooner, rather than later, I think she would be doing better socially, emotionally and educationally.

But that's not what happened.  Though I strongly feel that our county has been penny wise and pound foolish with respect to the mental, physical and dental care of all the kids in foster care, I also have to respect the fact that the county runs the healthcare system and they get to make their own rules.  Although I disagree with much of what has been done, have often complained about things, and have at times chosen to fight, I realize that the rationing system in our county is based upon the golden rule:

He who has the gold, makes the rules.

I have wondered if our county's mental health treatment decisions aren't always based on need.  Sometimes, it has seemed that decisions are based upon things like a child's ethnicity or whether or not a committee thinks a family deserves a given treatment. I remember comparing our daughter, her background, and her mental health needs with that of a child placed with some friends of ours.  Our child seemed to have greater needs and a worse history of abuse, yet our friend's child was initially given far more help. While their child received a plethora of services, we had to beg and fight to get basic counseling for a child we knew had been sexually abused.  At the time, I wondered if discrimination might have come to play in the decision.  Our friends were white, heterosexual, and Christian, and their child was white.  We, on the other hand, were gay and Jewish, and our child was of color.

Was that the reason?  I will never know.  Still, the question did cross our minds.

Is it fair?

Hell no.

But the truth is, the system isn't fair.  It can't be fair.  There aren't enough resources to go around, and difficult decisions have to be made about who gets those resources.  Should it be those who would benefit the most?  Should it be the sickest?  Should it be the squeakiest wheel?

As for little Amelia, I am uncomfortable with the idea that she should be summarily denied a transplant due to her intellectual disabilities.  At the same time, however, I can't help but be painfully aware of the questions her situation raises.  If there is only one kidney, and it is an equal match with more than one potential recipient, who should benefit?

Who lives?  Who dies?  How do you determine the value of a life?  How do you decide whether a child deserves treatment over another?

I know that Amelia's parents are truly suffering as a result of this decision.  Regardless of her disabilities, she is loved, and they want her to remain alive for as long as possible.  She is their child.  How could they feel otherwise?

To her family, her friends, and the people who care about her, Amelia isn't a dollar sign in an accountant's notebook.  She is a living, breathing, human being, with a value and character that is uniquely her own.

My heart goes out to her family.  I pray they will have peace, and the strength to carry them through  whatever future ultimately faces them.  I will go to bed tonight thinking of them, hoping they know that there are people out here in the blogosphere who care.

As for me, I am immensely glad that I am not the one responsible for making these kind of decisions.

I know it would keep me up at night.

Nobody Will Listen

Last night, in the wake of Danielle's rage, we had an emergency meeting with the therapist.

She is going to try to make a referral to a program for more seriously ill patients, in the hopes that she will be assigned a real psychiatrist instead of having to get medication through her pediatrician.  It is clear that the medication she is on isn't doing enough.  Unfortunately, the therapist warned us that this will be a long process.

In addition, she said that we should contact our local police department.  She suggested that if the police saw the damage to the house, they might arrest her and get her involved with the juvenile justice system.  She hoped that if Danielle were given probation, it might be enough incentive to dissuade further violence.

"This isn't going to change until Danielle wants to make a change," she told us.

So true.

When we arrived home, we dutifully called police to make a report.  Their attitude was unbelievable.  They refused to look at the damages to the house, and they really exhibited an uncaring attitude.  Even though Danielle had hit me, threatened us with a weapon, and had broken her bed and the door, there was "nothing they could do."

They spoke to Danielle, who lied and claimed that we had broken the bed.  They took her side of the story, and as they left they admonished us not to piss her off.

How many stories make the news where foster and adoptive children go berserk?  How many of those tales end with shocked bystanders crying, "Why didn't someone do something before this happened?"

We are trying to do something, only nobody will listen.

Danielle Explodes Violently

This morning, I find myself sitting at my desk, emotionally and physically exhausted.  I am discouraged beyond measure.

Yesterday, Danielle exploded.  By the close of the afternoon, she had called us every foul-mouthed, disgusting name in the book, broken her bedroom door such that it would no longer close, knocked the screen out of her bedroom window, cracked her wood bed frame, left a bruise on my wrist, and  threatened us with a pair of scissors.

The trigger?  We asked Danielle to help out with a couple of small chores before she went off to spend the night with a friend.  Although the chores got done, her attitude sucked, and she spent more than an hour calling us ugly names.  I finally got tired of the disrespect, and when I calmly went to speak to Danielle about it, she unleashed another foul-mouthed rant.

I was sick of it, so I asked for her MP3 player.

This is the brand-new device we had just bought her for her birthday three months ago.  She claimed she didn't have it and that it was in some girl's locker at school.

We have had more than one discussion about our expectation that Danielle not give her electronics to her friends, so we grounded her for the day and canceled her sleepover.

Danielle chose to use that as an opportunity to rage.

We called for help.  The response we got was far less than what I think we should have received.  I truly believe this kid needs to be in a hospital, group home, or residential treatment setting.

Although the explosion may be over for Danielle, the emotional aftermath of all of this is not over for me.  The acidic aftershock of too much adrenaline is still running through my veins.  I am frightened and I am angry.

No family should have to live this way.

Triangulation Fail

Danielle hasn't been home even a week since our break, and things are difficult.  She's been going out of her way to be uncooperative, and literally anything we say is met with an argument or insults.

It's exhausting.

For the past few mornings, Danielle has deliberately neglected her morning chore, which is to empty the dishwasher.  Instead, she's spent excessive time primping in the bathroom, taking up to an hour fooling around with her hair and makeup.

The first day this happened, her consequence was she that had to wash our breakfast and lunch dishes since the machine was still full and we'd had to leave them in the sink.  After the second day, we confiscated all of her primping materials, including her curling iron, hair gel and makeup.  We gently explained that it was obvious her cosmetics had become a distraction that was preventing her from getting her chores done.  We helpfully decided to hang onto them, until she could show us she'd be able to get the job done without a fuss.

She tried to argue.  She whined.  She wheedled.  Then, she threatened to complain to her therapist.

"I'm going to tell [therapist] that you are taking my stuff!" she threatened ominously.

"Go ahead," we replied.

When it came time for Danielle's appointment, FosterEema spent a few minutes briefing the therapist on what was going on.  She explained Danielle was arguing about chores, being rude at every turn, and that we'd taken her cosmetics as a consequence for not emptying the dishwasher.

Danielle used the opportunity to complain, and to try to make us look as bad as she possibly could.

The therapist wasn't having any of it.  Every time Danielle tried to stick-poke or argue that her non-compliance was reasonable, the therapist called her on it.

"It's pissing me off that they are taking my stuff!" Danielle complained.

"So do what you have to do to get it back," advised the therapist.  "You just have to do what your parents ask."

Triangulation fail.

Dental Woes

As I wrote earlier, Danielle is having more than her fair share of dental woes.

She has to have her wisdom teeth out, which will have to be done in two separate surgeries, because of the crazy way our state-sponsored medical insurance works.

But the dental joy isn't finished there.  She still has three cavities that need to be filled.

This morning, her dentist filled the first of the three.  Since the cavities were in several parts of her mouth, he didn't want to freeze everything all at once.  He said that kids have a tendency to bite themselves, often causing injury, when their entire mouth is frozen.

So Danielle will have to go back to the dentist yet again.

This semester, she's enrolled in quite a few more mainstreamed classes, which aren't as tolerant of absences as her specialized homeroom class.  As a result, she can't really afford to be absent more than absolutely necessary, so she went to school immediately after her appointment.  According to FosterEema, Danielle's mouth was so frozen that she was slurring her words and blowing spit bubbles every time she talked.

Although she tried not to, FosterEema couldn't help it and she laughed.

"Thut upp!" Danielle cried out in protest.

I am hoping that all this dental unpleasantness will encourage Danielle to brush more often.  When I heard about the cavities and tried to talk to her about it, she just stood there and grinned, like she thought it was hilariously funny.  Maybe a dose of natural consequences will teach her the importance of brushing and flossing.

Why Make It Easy, When It Can Be Hard Instead?

Danielle has to have all four of her wisdom teeth out.

So here is today's installment in the "why make it easy, when it can be hard, instead" category.

Our state-sponsored medical insurance will pay for her wisdom teeth to come out, which is terrific news.  Unfortunately, they will only pay for two extractions at a time.  Even though the dentist and the oral surgeon agreed that all four wisdom teeth must come out*, the state will only allow two to be extracted at a time.

So instead of sedating the kid once, yanking all the teeth, and getting it done all in one procedure, the state has to waste money and pay for two sedations.

Even stupider, each extraction has to be done six months apart.

Does this make any sense to anyone?

And here's where it gets even stupider:  Not only will the state only authorize for two teeth to be removed during a single surgery, it is illegal for the oral surgeon to pull all four and charge us the difference. As a result, the only way we would be able to have all of Danielle's teeth to be extracted in a single setting would be to pony up all the money and pay a private oral surgeon for the entire operation.

Crazy.

---
* The oral surgeon claimed that her mouth was a "textbook case" where a kid needed to have all wisdom teeth out.

An Explosion in the Kitchen

Danielle's good attitude lasted about a day.

By yesterday afternoon, she was back to her usual tricks.  If we asked her to do something, she'd tell us, "NO!" but then she'd end up going ahead and doing it anyway.

She came home from school in a bad mood, and ended up in a worse mood when we told her we'd received a call from her homeroom teacher about her class schedule.  It worked out that the best schedule for Danielle ended up excluding her from PE with her special group at school.  We had the choice of placing her in a mainstreamed PE class (which meant uniforms, dressing out and showering in a locker room full of girls) or dealing with physical activity at home.  Since I figured the locker room scenario would end up being an epic fail, we decided she'll take PE at school next semester, and this term she'll just get some exercise at home.

Exercise at home means going running with me three or four times a week.

She didn't like that much and carried on about how her doctor told her she's anorexic and shouldn't exercise (not true), she complained, griped and bitched about how it was unfair she had to exercise with me, but I ignored her.  As soon as I was done with work for the day, I put on my running shoes and off we went, Danielle griping and complaining all the way.

We made it about 2.75 miles before she pooped out and we had to call FosterEema for a ride home.  Danielle was grumpy and threatened to refuse dinner.  We told her that was fine, but she still had to sit at the table with us.

She ate two large helpings of food.

After dinner, she helped clean up, complaining all the while, and then went to bed.

It was shortly after she went to bed, that the explosion occurred.

FosterEema and I were sitting on the sofa watching a movie (well, truthfully FosterEema was watching, and I was mostly falling asleep) when we heard a big BANG in the kitchen.  FosterEema went to to investigate, and apparently our microwave, which had not been in use, had died a sudden death.  Blue smoke wafted through the kitchen, and FosterEema could hear electronic sizzling sounds as the device coughed out its death throes.

I'm glad we were home when this happened, as this very well might have caused a house fire.  FosterEema unplugged the microwave, and we went to bed.

For once, we had an explosion in the house that didn't involve Danielle.

Reunion

My wife and I have enjoyed two glorious, kid-free weeks.

We needed the break.  We had a week off from work, which we enjoyed thoroughly, doing things that would have bored Danielle to tears.  The second week we spent working, but even it felt somewhat like a vacation because things were so quiet.

Unbelievably, Danielle came home yesterday with a good attitude.  We were pleasantly shocked, because usually when she returns home from visits with friends or family, she comes back with a really terrible attitude.  Usually, when she comes back, we are treated to name-calling, and being told how much she hates us, wishes she could live elsewhere, and how we are her worst nightmare.

We got none of that last night, which was a pleasant surprise.  I think it's the first time she's come home from a visit away without being completely ugly.

Nice.

Still, given our history, I can't help but wonder how long the good attitude will last.

Holiday Meh

My favorite Christmas tune has to be White Christmas.  I find it more than just a bit ironic that one of the most famous Christmas songs ever was written by a Jewish composer.

It's a great song.

I'm dreaming of a white Christmas
Just like the ones I used to know
Where the treetops glisten,
and children listen
To hear sleigh bells in the snow

I'm dreaming of a white Christmas
With every Christmas card I write
May your days be merry and bright
And may all your Christmases be white

I'm dreaming of a white Christmas
With every Christmas card I write
May your days be merry and bright
And may all your Christmases be white

I sing this song every year when I volunteer at a local convalescent hospital. It's always the last song in my holiday performance, because it sometimes makes me downright misty-eyed. I remember all the wonderful holidays I celebrated as a kid, and it makes me ache for times gone by that can never be recaptured again.

These days, the holidays bring more than their fair share of difficulties.  Danielle's acting-out behaviors seem to ramp up this time of year, and it's no wonder why.  As much as the holidays make me ache for times gone by, I'm sure it's even worse for her.

As the holidays grew closer, I spent a lot of time agonizing over what we would do to celebrate them.  In years past, we've tried really hard to give Danielle a good holiday, and it's only seemed to backfire.  When we've bought her nice things, she's tantrumed and told us how much she hated what we got her.  Every year, we've concluded the holidays feeling emotionally bruised, battered and discouraged.

So this year, we took a different approach.  Instead of trying (and desperately failing) to put together a "good" holiday, we did almost nothing.

Yup, that's right.  Almost nothing.

On the first night of Chanukah, we handed Danielle a pile of gift cards, and that was it.  We didn't light candles, sing songs, spin the dreidle or make latkes.  Other than the handing over of loot, which we did shortly after Danielle came home from school, there was nothing special about the day.

And guess what?

No explosions.

Since we don't celebrate Christmas (and Danielle has been increasingly telling us that she's not Jewish) we opted to send Danielle to spend some time with the grandparents who do.  So far, we haven't heard much back from them, so we are assuming that no news is good news, at least in terms of her behavior.

I know Danielle is having some fun, as we got a call a few days ago wanting to know if it would be okay if she got a haircut and highlighting.  Last time she had it done, she ended up looking like a skunk-head with too much mousse, but she liked it and I guess that's really all that matters.

While Danielle was with the grandparents, FosterEema and I took a short road trip.  We did a little bit of camping and a lot of visiting with a friend I haven't seen in almost two years.  Danielle would have been bored stiff, but we had a great time.

As far as holiday celebrations go, this year was definitely a big meh.  However, the lack of festivities meant we made it through the season without tantrums, screaming, or explosions.  I'll call that a huge success.

Success or no, I can't help but feel the wistfulness and longing that is conjured up by the song White Christmas.  The holidays are supposed to be joyful and exciting, filled with activities, family, and piles of gifts.  I realized this year that, no matter how much I'd like to give that to my kid, she's just not able to receive it.