People who equate truth with fact are missing the point.

Disposable Boy

When I met Sarah* last winter, her 14 year old son Logan had already been in therapeutic foster care (TFC) for almost 6 months. Our support group for parents of children with mood disorders has been a life-changing source of support for Brian and me, but sometimes, witnessing the chaos and pain in the lives of families whose children are adolescents is more than a little frightening.

Through Sarah and Logan’s story (among others), I’ve learned that in New Mexico, TFC is much more widely used for kids who need out-of-home placement than are residential treatment centers.

Don’t let the words foster care trip you up, though. This is not protective custody whereby children are removed from neglectful and/or abusive parents. Parents whose children are in TFC have not lost or relinquished any of their parental rights; their child lives in the home of specially trained adults, but custody remains with the child’s parents. The child receives care from a psychiatrist and the child and family see a therapist regularly.

Far from an ideal system, but for a child who can be safe in a home environment, it’s a more natural solution than an institution.

Sarah and her husband didn’t make the decision to send Logan to TFC lightly. Just the opposite, in fact; Logan went to TFC when his mom and stepdad felt like there were no other options. When they were no longer able to keep Logan, his little sister, or even themselves safe, and after several hospitalizations in a short period, they took the best option available to them: TFC.

After being matched with an inappropriate family, a return home, and yet another hospitalization, Logan was placed with a TFC family that suited him well, and he was there for nearly a year.

During that year, Logan had ups and downs, but overall, his progress was positive. He bonded with his foster family. His psychiatrist (the same doctor who treats Carter) found a good combination of medicines and Logan had longer and longer periods of stability. The family was progressing in therapy and Logan slowly, gradually, began to have more time at home. The psychiatrist, therapist, TFC parents, and Logan’s parents agreed that sometime in late fall or early winter, Logan would be ready to move back home.

And then in mid-summer came the bomb: Logan had gone several months without any significant episodes, and he had to go home.

Who made that decision? Was it someone who knew Logan, who loved him, or at least cared about him? Was it someone who understood his unique challenges and limits? Was it someone who knew that Logan was starting high school in late August and that the dual transitions of the move home and the new school would likely be too much for him? Was it someone who knew his history?

Was it someone who gave a shit?

It wasn’t someone at all. It was something – a list of rules or a computer program or a flow chart thumbtacked to a cubicle wall. No person made that decision, because all the people knew it was the wrong thing. The psychiatrist and the therapist, the foster parents and Sarah and her husband all knew the time wasn’t right. Logan wasn’t ready, and neither was his family.

They all begged and were granted just a few more weeks. Logan was released from TFC within a few days of his first day of high school, sent home after not yet having had a full weekend-long visit home.

Within a week, he was acutely ill. He left school and Sarah didn’t know where he was. They brought him home; he disappeared again.

Tonight, Logan will sleep at the psychiatric hospital. He’s been there for over a week. The list of rules that said he had to go home several months before he was ready? It saved some money, probably thousands of dollars. I don’t know the cost of a night in the psychiatric hospital compared to a night in TFC, but my best guess is that one night at the hospital costs about as much as half-a-month to a month in TFC.

Our society will pay for our mentally ill children. There isn’t a way around that; we parents can’t lock them up at home so you don’t have to deal with them. They are not well, and just as no parent of a child with cancer or muscular dystrophy or any of a thousand other serious illnesses can bear the whole cost on their own, neither can we.

The difference between mental illness and other illnesses is this: people with serious mental illness who don’t get adequate treatment are very likely to end up in prison.

I get that some people don’t want to pay for treatment. I do. I don’t agree, but I understand. What I want everyone to understand is this: we are making a choice, and that choice is not between paying or not paying. It is a choice between paying now and minimizing suffering, or paying later with maximum suffering.

Prison cells are expensive.

The removal of huge numbers of caregivers (like me) from the pool of working (and therefore tax-paying) adults is expensive.

The absence of huge numbers of people who are mentally ill who could, with appropriate treatment and support, enter the pool of working adults, is expensive.

Ambulance rides and psychiatric inpatient treatment that could be avoided with appropriate treatment (including outpatient, in-home, therapeutic school settings, and a host of other possibilities) are expensive.

There are so many other ways that lack of treatment (or inadequate treatment) ends up costing vastly more than good treatment would have cost in the first place, but it doesn’t even begin to touch on the human side of the issue.

We parents of kids who have behavioral, developmental, and emotional challenges want the same things for our kids that every parent wants: we want our kids to grow up to have fulfilling, joyful lives full of love. Our kids need lots more support to get there, and those lives might look very different than the lives of neurotypical children, but that’s what we want.

We have bent our expectations because of our children’s issues; should we also bend them because people balk at the cost of treatment?

Who cringes at the price of caring for premature babies? Who would deny them the specially trained physicians, devoted nurses and therapists, and state-of-the-art intensive care units that give them the best chance at a healthy life? No one says, “Hey, it’s not fair that those kids get so much!”

We parents of kids who have behavioral, developmental, and emotional challenges hear that often. I’ll tell you this about fair: we’ve mis-defined it. There’s nothing fair about making sure that everyone gets exactly the same thing. Fair is when everyone gets what they need.

Logan didn’t get what he needed, and there’s just one reason for that: our cultural priorities are seriously warped.

Tragically, devastatingly, criminally warped.

Here in the US, we’re playing a zero sum game. For Logan to get what he needs, someone else has to get less. For Carter to get the services he needs in public school, other children have to learn in a more crowded classroom. We are continually shuffling a few dollars back and forth, trying to make them cover more than they can cover.

More and more, we funnel those dollars into prisons because we’re scared that taking care of our neediest citizens will start us on a long, slow slide to…what?

What are people so afraid of that is somehow worse than what Sarah and her family is facing now?

A flowchart and a budget say that Logan is disposable. Nothing will be OK for kids like Logan and Carter until people take those decisions back and we, collectively, acknowledge that people matter more than dollars.

For more information about how mentally ill Americans (who are less likely than average to be violent, and more likely than average to be victims of violence) end up in prison, watch this, read this, this, and this, and if you really want to know about this issue, pick up a copy of Crazy: A Father’s Search Through America’s Mental Health Madness by Pete Earley.

Life in a prison cell is not the goal I have for my little boy, and it’s not what Sarah wants for Logan. We can’t keep them alive and help them arrive at fulfilling and happy lives by ourselves.

Join me and write some notes to your state and federal representatives. Send them this message: there are no disposable people.

*I have Sarah’s permission to share a bit of their story here, but Sarah and Logan are pseudonyms.

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33 comments to Disposable Boy

  • Ant Judy

    Yay. Adrienne. On the mark.

  • Great post! The main problem with society is that they don’t view mental illness in a physical way when mental illnesses are actually physical brain abnormalities.

  • Anonymous

    My 15 yo son is Logan. He’s been tossed, cheated, disposed of by the system many times. And because of this, now, one more time, he is in residential treatment with no plans for him to ever return home.

    Where will he go? I haven’t a clue.

    It’s damn near impossible…he’s not a cute little baby born too early. He is not autistic. (although I have a son who is) He looks “normal”, therefore, society demands that he “behave normally”.

    He’s dying in so many ways. Yet, he is alive and will torment the world as well as himself.

    Society only sees a trouble-maker, a monster.

    He is my child.

    I, apparently, cannot save him.

    • It’s so hard for people to have compassion for those who are mentally ill. Mental illness isn’t cute and the people who have it act in unpleasant ways.

      I hate that people can’t think around that corner.

  • “…people matter more than dollars.”

    What frustrates me most about our current political climate is that dollars always, always seem to matter more. I can’t understand how people can consider themselves to be good, moral people with sound “family values,” and still be willing to throw other people away.
    Heather recently posted..Or maybe I should call her Marge

    • Because they don’t understand the ultimate result of their plans and systems. They think we’ll all find our bootstraps and start pulling. Instead, we’ll need death wagons.

  • Heather

    Adrienne,
    I know the benefits of TFC. My sister in law had to give her son over to TFC when he was 7 years old. The family who took him was a great foster family with several foster children living there. It was a great situation for him. Then the state decided to defund the program and the foster parents lost their license. This meant that my sister in law faced an impossible choice, bring her son home where her other two children woudl be in danger or send him to live with another TFC about 3 hours away. Fortunatly my mother and father in law stepped in and took him. He is now thriving and doing very well, relatively speaking, but I agree that the decisions regarding these kids should not be made by nameless faceless computers or beuracrats. The people who know these kids and their situations should be able to look at each case individually, and the children should be priority not the bottom line. I hope that many others pick up this fight and will continue to push for the children.

    • Oh, that is heartbreaking! Thank goodness your SIL’s son is doing OK. When something in our situation saves Carter (our family’s ability to pay for his private SN school, for example), I’m always incredibly grateful, but also deeply angry. My family shouldn’t bear that burden, and even more than that, one shouldn’t have to have those resources in order to save one’s child!

  • Sarah, thank you for sharing your story. It makes me sick that children with mental illness are treated as less than others. Funding the criminal system instead is so completely backwards. Why wouldn’t we want to prevent a child from ending up there in the first place? It boggles the mind.

  • Adrienne, I’m just shaking as I read this, it is so deeply disturbing. And to know that it happens every day, every hour, every minute of every hour of every day. Today, another child will have the rug pulled out from under her or him, and be sent into a tumbling spiral because of bureaucratic rules intended to save a dollar today and tomorrow (and the actual child) be damned. How many children will have their vital services slashed today? Too many to count. Our society is only as functional, only as valuable as its least functional members. In how we care for the weak and the vulnerable is the true measure of our moral fiber. As long as we run services like a business, and let the bottom line be the arbiter of all things, we will fail miserably. What happened to communities caring for their members? It’s not just a matter of scale, it can be done nationwide – look at countries like Sweden, Norway.

    Sorry, I’m just tired of listening to political candidates talk about slashing taxes, getting back to “American” values, eviscerating the “Nanny” state. Really? Are we every man for himself, is that what being “American” is all about? You don’t want a Police department, roads, clean drinking water, a Fire department? Old people should just walk out onto the ice flows and die unless they or their kids are rich enough to support them? Because you know what? Taxes make all those things happen. And, no, there is no such thing as the “pay as you go” plan, you can’t just pay for the services you use – that’s back to “every man for himself” feral life, and I think we are rally wanting more from that from a society, no? With civilization comes responsibility, people, the responsibility to care for ALL our members, not just the ones someone has deemed “worthy”, and throw away the rest. And if you really don’t care about other people, then do it for yourself, because how do you know that the people deciding worth are not going to put you, or a member of your family in the trash pile tomorrow, hmm?

    I the 1950’s that “glorious” time people keep harping back to? The tax on wealthy individuals was WAY higher than now. And? Corporations actually contributed money into the economy, to help support all members of it. They manned up and shouldered their fair share of the tax burden, not hiding behind tax shelters and flowing their money into share holders pockets to the exclusion of all moral responsibility.

    OK, you have got me really ranting now. I’m not usually all strident like this. Sorry. Whew. You really got to me today. OK, shutting up now.
    Varda (SquashedMom) recently posted..Blanche- Age 93

    • Varda, how I wish YOU were running the country instead of the central banks….uh, I mean, Dems & Repubs at the wheel. “Family values”? Please. This country’s emphasis on freedom at any cost has hurt many while privileging few. If we valued families and children like we SAY we do, there would be unlimited support for Logan and the millions of vulnerable kids like him.

      I’m teary-eyed myself. I wish I could do more.

    • I remember, maybe 10 years ago, some places in Florida were offering senior citizens places to live where they could get a cut on their property taxes. They figured, their kids had already gone to school so they shouldn’t have to pay for public education anymore.

      It just blew my mind. Public education benefits us, collectively. It should always be one of our top priorities, no matter where we are personally in our life cycle!

      So yeah, every man for himself, and we’ll STILL pay. One way or another, we’ll pay.

      My dad wrote this satirical piece several years ago. It draws this idea of “pay as you go” to its natural conclusion. Not a pretty picture.

  • What is now happening to Logan is the thing I dread for my kids. There are myriad things that are impossibly hard about having non-neurotypical children, but its the psych ward that terrifies me. The thought of one of my children growing up without adequate psychiatric, medical and pharmaceutical support and ending up in jail or worse. I’m terrified that something will happen to me and they’ll have to live with their father, who as much as he loves them has no idea what is involved in creating and maintaining all of that support. When things are going well I tend to get a little short-sighted because the things that happen to kids like Logan are the things I’d rather not think about. You remind me that its not just about my children or the children of the people I’ve come to know and care for…its all of the children like mine who need our utmost love and support. Thank you for this post, Adrienne.

    You need to write a book, my friend.
    Barnmaven recently posted..On friends and gay teen suicides and other random things

    • This reality hurts so much, it takes my breath away. Life for people who have mental illness, developmental delays, or even just old age – it’s unconscionable how our society neglects them.

      Yes, sometimes, in the middle of the night, I can’t catch my breath because of the fear.

  • I am currently reading a book entitled, “The Boy From Baby House 10.” It is about the Russian orphanage system. Children in the system are separated into groups by the age of two and by three, if they are diagnosed as “incurable” or unable to be educated, they are sent to a mental asylum. Where they lay in cage like cribs with no creature comforts, no warm and loving attention, very little food, and no mental stimulation. All because some people in a MInistry department rubber stamped a file and the children’s fate was sealed.

    The imperfect children are hidden away without anyone noticing. That is criminal…it is inhuman. I just thank God everyday that I rescued my daughter from all of that. Our system in the US doesn’t work, either…arbitrary decision, asinine laws, people who don’t care.

    I’m left shaking my head at how to make it better.
    Lanita recently posted..I May Have Changed A Life Today

  • Oh, I’m just crying now.

    I am perpetually amazed at how we fail to see that bad programs now lead to incarceration later.

    HOW? How can we all be so, so stupid?

    *heavy sigh*

    *tears*

    I hurt for Logan. And my heart breaks for Sarah.
    Lori @ In Pursuit of Martha Points recently posted..Raccoons- 1- Lori- 0

    • I don’t know why so many people don’t get it. I have no idea.

      Right now, our school district is suing the state over budget cuts. In NM we pay $6000 per year, per student. We pay $9000 per year, per prisoner.

      We’re not saving money by shortchanging students, families, patients, etc. Far from it!

  • One of my best friends and her husband run an adult foster care that is owned by her family. She and her husband and two little boys live in the house with 11 mentally and physically (but mostly mentally) ill women. She (my friend) grew up with this life. Her mom and dad owned and run (by living in) an AFC home her whole life.

    The stories I hear about funding and follow up and how most AFCs are run is nauseating. There is just not enough understanding about what the mentally ill need and require.

    When ladies “run away” from their home, they go off their meds and either go back to what they “know” (which means either self-medicating with heroin, etc. or hooking, or other “bad” things). They need constant care. They need medication.

    And all of that requires funding. Funding no one wants to provide.

    I get SOOO sick of the “it’s not my problem” attitude of this country. If people don’t have kids in school? They don’t want their tax dollars going toward that. If they don’t have a mentally ill person in their family? They don’t want to pay for yours.

    It makes me sick. Aren’t we supposed to care for each other?

    Isn’t it PROVEN that we are better as many than as one?

    It’s not a religious thing either–it SHOULD be universal to just do and be GOOD to others, and it will come back to you.

    Sigh…again, my friend. I have no answers.

    just head shaking and sadness.
    Katie recently posted..Back to School Bonanza 10- The Rocky Mountain Mama

    • It leaves me furious, but scratching my head, too. People don’t want to pay for treatment for people who are mentally ill, but they are frustrated when they are confronted by seriously ill people on the streets. Do they think we can wish it away?

  • just the title brought tears to my eyes. My parents adopted a mentally ill child (we didn’t know it at the time) and after two years of giving him their all, went to court and had the adoption undone and all records expunged so he can never find out our names. We literally feared for our lives from this little, little boy. I am years and years out from that experience and I will never recover I cannot imagine what he experienced and cannot imagine he will ever recover. No one could diagnosis him (he had severe RAD), no one was willing to search outside the box and figure out what was wrong and how to help this little boy. I don’t know if he could have been helped he was really severe but I know someone could have tried harder. My parents loved him and tried but they couldn’t find any help. Everyone thought we were the crazy ones.
    No one is disposable, I hate that our society A)dismisses mental illness and B)throws people away without so much as a second thought. Maybe they won’t be “like us” but no one is like me, they are still wonderful, productive, God-given members of this society and we are responsible to take care of them and meet their NEEDS, not just hide them away or neglect them.
    wildflower recently posted..One thing to say

    • Oh, what a heartbreaking story! So often, disrupted adoptions make the news and paint the parents as villains, and I just want to shake people and force them to see the reality: there isn’t enough help. If you can’t get the help you need to keep everyone safe, what are you supposed to do?

  • LCW

    While I haven’t had experience with this directly, I can say that I felt a similar way about students with special learning needs being forced into the mainstream classroom because of a checklist or flow chart. I was a special educator, I KNOW that it happens that way. Why provide 4 hours of specialized service a day when 1 will do? Why have pull out language therapy when we can squeeze another kid into a small group in the corner of the classroom? Why spend more money on hiring another teacher when we can underpay, and hire two warm bodies who aren’t properly trained to work this population of children? It’s cheaper to take the easy route, it’s also far more damaging to the child and the child’s family. I support education, but I cannot go back into the classroom if I don’t believe in the system that’s behind it. How can I honestly tell a parent I think what we’re doing with their child is the right thing when I know it’s not? I can’t….

    I really hope something changes! Thank you for such a heart felt, educated post. It’s sickening what the government and private insurance companies will do for the almighty buck.
    LCW recently posted..Deep thoughts

    • Ugh. All so, so true. So many people have gotten frustrated with ME, saying I should have Carter in PS because they are required to provide FAPE. I can’t get them to understand that the definition of “appropriate” gets awfully sticky when their dollars are measured against my child’s needs.

  • Although I do not have a child with mental illness, I am helping care for my 58 yr old sister in law. It is quite the struggle, especially since she doesn’t see herself as ill and thus does not properly participate in her own care. As hard as this is, I cannot even imagine what it would be like if she were my daughter.
    Hugs to you all for your strength, courage and love!

    • I (as most parents of seriously mentally ill children do) fear for Carter’s adulthood. For now, treating the illness is hard enough. With teens and adults, there’s that whole other piece about denial and compliance that we don’t have to worry about right now.

  • Before I even got to the end of your post I was going to suggest reading Crazy, but I see you have already read it! For several years I worked as an RN in LA Unified and had daily encounters with mentally ill teens and their families. There was so much denial, so little follow up, and so little support from The System. It was quite disheartening. I wish I had an answer for this, but I am afraid we are in for a long struggle.
    The Sweetest recently posted..God Doesn’t Make Mistakes

  • Exactly.

    Easier to do the work up front, then try to clean up the mess at the end.

    Just like life, people.

    Excellent, convincing, persuasive post.

    Thank you!
    Alexandra recently posted..Worldly and Jaded and Validation Kicks A and Happy Thanksgiving- Canada!!

    • Exactly. Just like life. Easier to brush your teeth than deal with them after they get all rotten. Easier to educate our children and take care of their health now than lock them up later.

  • I can totally relate – mental illness just like regular health care costs a fortune. It is also far more difficult to get the help needed for your children – especially as they get older. In my state at age 13 kids have a right to make their own decisions regarding some of their care, particularly mental care, and when dealing with a child who is not making the choices they need to, at that age there is almost nothing that can be done unless they are willing to commit themselves.
    On 2 occasions I tried to get my daughter who was suicidal committed but the hospital told me they did not think she was really going to hurt herself. Instead she ran away, was gone for 3 days and had some of the most horrific things happen to her. It is more than just cost – it is also about parents having the ability to decide what their mentally ill child needs without going through hell and back in order to be able to make the decisions on their behalf. It is expensive no doubt; I have a loan for the next 15 years paying for her stay at a therapeutic boarding school to prove it.
    Sadly disposable has become routine.
    Jennifer recently posted..Preparing Meals Ahead – Making it Easy

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