If Chickadee had cancer—if she had a tumor in her brain or rogue cells infiltrating her marrow—everything would be different. Well, almost everything. The thing that wouldn’t be different would be the fear and the worry and the what-if-ing I try to only indulge in in the middle of the night.
But people wouldn’t avoid us or say, “I don’t know what to say.” They would say, “I’m so sorry” and they wouldn’t act like we were contagious or whisper about our parenting.
Our health insurance would pay for her treatment, because that’s what health insurance is supposed to do. Even though brain surgery and marrow transplants are much more expensive than the treatment she needs, which they refuse to pay for, because health care in this country is undeniably broken.
And we could be there with her, all the time, and know what the heck was going on.
So here is the thing about paying for residential psychiatric treatment: Our insurance has no benefit whatsoever, and my ex’s insurance has coverage, but further investigation revealed that it’s pretty stingy. Much like the short-term psychiatric coverage we already have, it appears that as soon as the patient says they’re not hearing voices or thinking of hurting themselves, they’re done. Let ’em go! They’re no longer a danger, who cares about an hour or a day or a week from now! We elected not to go through the hassle of switching insurance when it became clear that the coverage might not really be all that good.
Now I spend a significant portion of my days navigating the Medicaid maze, because theoretically Chickadee is eligible (once your minor child is hospitalized for over 30 days, they can be considered a “household of one” and qualify regardless of your income level), but of course the first time you apply you get denied, and then you have to mount an appeal, and blah blah blah blaaaaahhhhhh I will try not to bore you with this except to say that it sucks. [Except for this: The reason for the initial denial is that I have a joint savings account with Chickie that has more than $2000 in it, which is the max “assets” allowance to qualify. She will not qualify until that account is “paid down” directly to the hospital. Only… it’s an online savings account. The only way to get money OUT of it is to transfer it to another account which I own. Which looks like fraud to the government, and could render her ineligible for an entire year. But the bank can’t/won’t pay the hospital directly and there’s no other way to move the money out. The fact that we have already paid the hospital in excess of what needs to be “paid down” does not count; we are not allowed to pay ourselves back from that account, again, because it looks like fraud. I AM SO GLAD THE GOVERNMENT IS SO LOGICAL LIKE THIS.]
In the meantime, one of the factors in choosing the facility which we did is that they will take Medicaid. One of the things which never occurred to me in my suburban white middle-class-ness back when we were scrambling to find the right place was that a facility which takes Medicaid is likely to be fairly heavily populated with foster kids and other children who are—certainly through no fault of their own—in positions of, shall we say, feeling like they have nothing left to lose.
Now. Do I like the doctors at this place? The senior staff, the therapists, the nurses, on the whole? Yes. But getting a phone call back from these people or an email reply is a full-time job. Because they’re busy and understaffed and not a lot of parents are around asking for answers. When we visit on the weekends, there are usually only four other families there for visitation, max. There are a hundred kids at this facility. And it’s the same five families every week, too.
A couple of weeks in, Chickadee was attacked by another patient who had been threatening her for a solid week before it happened, and who had already similarly beat on at least two other patients. This girl threw her down and pummeled her for however long it took for a staff member to call a code, get backup, and pull her off. It could’ve been worse, I suppose; nothing was broken. I mean, sure, my daughter was bloody, bruised, and fucking TERRIFIED, and I had to find out about it FROM HER on the phone that night because the staff “forgot” to call us, but at least when I was trying to grill a nurse on the phone about it she said, “Well, you know, teenagers get into fights.”
Oh, honey. NO. I got so puffed up with righteous indignation and fury when she said that, I’m surprised I didn’t float right on over there to show her how middle-aged mama bears get into fights, too. Instead, I sputtered something about how MY TEENAGER is an honors student who had never so much as raised her voice to a peer prior to being locked up with this particular bunch of hoodlums, and I would appreciate it if she didn’t try to trivialize the POUNDING OF MY BABY’S FACE as something normal and expected.
That time, we got a lot of phone calls back. Eeeeeeveryone called me. No one actually said, “Dear God, please don’t sue us,” but I think we all knew that was the subtext.
They moved Chickadee to a different unit with a younger group of girls. And at first, she was happy and relieved. No one threatened to beat her up, there. The girls seemed calmer. I had my doubts about the move—hey, how about MOVING THE THUG, say, over to juvy?—but we said okay.
And then her stuff started disappearing.
Again, most of the kids there are coming from nothing. They bring nothing. They have a hygiene bucket full of generic toiletries doled out by the hospital staff and a few days worth of clothing. My kid, she has a bucket full of name-brand toiletries because she has a skin condition and we have enough money to buy super-fancy things like Stridex and dandruff shampoo. WOO. It was not terribly surprising to learn that the other girls were pilfering her Stridex. And her tampons.
Then her retainer was stolen. DO NOT ASK ME. Spite? Curiosity? Boredom? No one knows. It’s a locked unit, and they cannot find it. Where did it GO? No one knows. It’s a custom device, and we can’t get her a new one without taking her to the orthodontist for a new mold, so the hospital said they would give it a week and then arrange to replace it. It’s been two weeks.
Then one day her lotion was empty. The thief was caught with a handful of it. Why? It’s unclear.
The next day, her shampoo had been emptied.
Her first stick of deodorant vanished. Again: locked unit. WHERE DID IT GO? Really, maybe Secret’s secret is that it turns INVISIBLE!
The day after that, she found a girl rifling through her clothing bucket. Really? Does she think that maybe she’ll just put on one of Chickie’s shirts and then claim it was hers all along? I do not understand.
One day her roommate got mad at her and hid her glasses. Chickadee is legally blind without them, so that was a real laugh-riot, as you can imagine. They were found shortly thereafter, but she got in trouble for refusing to proceed to a scheduled activity without them. Because she should just… feel her way there? I’m unclear.
I brought her a couple of magazines, last weekend. Girl’s Life, and one of Monkey’s issue of Games. The former was stolen immediately, with a handful of pages returned to her in shreds. No one bothered with the latter—Chickie reports that several of the girls on her unit can’t read, anyway.
Meanwhile I’m calling, every day. Trying to get someone to call us back. As of last night, my daughter’s hygiene bucket is now locked up in the unit office, because hers is the only one that’s ever pilfered. Apparently she’s the only one with “good” stuff.
Chickadee reports that she has two friends on the unit. One is a twelve year old girl whose mother comes to visit, too. It’s funny where you find comfort in a time like this, but her mom and I smile at each other in the dingy little cafeteria during visitation. We are secret allies. Our girls are loved, we are whispering it to them every week, hoping our mere presence reminds them that a better life is waiting for them when they’re well enough to come home. The other friend is also twelve years old… and pregnant. When I gasped, Chickadee’s mouth twisted into a wry half-grin and she added that this child already has a 2-year-old being raised by her mother.
I cried. I couldn’t help it. I don’t even know her. It made my heart hurt.
We talk about moving her someplace else. But the reality is that most residential treatment centers are like this, or they take no insurance or Medicaid at all and cost three times as much.
When I finally got one of her therapists on the phone to discuss the thievery, the nightly crying from Chickadee that her stuff is disappearing, she was unperturbed. “I think that Chickadee likes to latch on to these sorts of things, focus on them and magnify them, as a way to divert attention from the more pressing issues relevant to her treatment,” she said.
On the other end of the phone, I may have rolled my eyes so hard they got stuck. “I agree with you that she is a master of deflection,” I admitted, “But it doesn’t change the fact that THIS IS NOT OKAY. She has a basic right to exist there unmolested, with her belongings intact. How is she supposed to feel like this is a safe space to deal with the scary stuff she needs to address when these things keep happening?” She agreed it was a problem. But half an hour later I hung up unsure about anything actually changing.
It sucks. There’s no better way to put it. You hope that it’s unpleasant enough to give her the motivation to get the hell out of there, but not so unpleasant that she loses all hope and gives up. I’m okay being a squeaky wheel, but at this point I feel like I’ve gone from squeaky to screechy and still, I worry every day about what will happen next. I worry every day she will never forgive us.
And then I take a deep breath, tell her I love her more than anything, and I go buy more Stridex and tampons and make more phone calls.
I am SO SORRY. And I say it over and over all the time and I hope it’s clear how much is behind it – like: I wish I could take over the worry and stress for a day, just a day to give you that time off; I wish I could magic up a REAL health care plan that would let you get Chickadee to a place that can focus on her and not on the niggling, petty-minded, horrible antics of some broken children; I wish I had a crystal ball and could give you an absolute date when some of this were fixed…
I’m so sorry.
O.M.G. Reading this gave me goosebumps. I cannot, repeat, cannot imagine what this is like. Pregnant at 12?????? A two year old????? Uh, wow. My heart is breaking for you.
I can not imagine the frustration you are feeling on all counts. It’s terrible to think she needs to be there, but at the same time isn’t feeling ‘safe’ there. How is she supposed to focus on treatment when her person and belongings are treated with so little regard? It mind boggling really.
Mental health, and mental healthcare are still treated with such stigma, even it seems by health insurance companies.
My heart hurts for her, for you, and for every child that is there.
Oh. My heart hurts for you. I just…I am so so sorry.
oh Mir :( I’m sorry for Chickadee! She shouldn’t have to go thru all this on TOP of what she’s already going thru. I can only imagine how difficult it is for you not being able to fix it. My thoughts & prayers have been with Chickadee and will continue to be there for her during this difficult time. As well as with you and your family.
Oh God, I am just… so… sorry. I am angry for you and Chickadee and the kids on that unit who have no one who cares for them. I am angry that our medical system is so broken and people don’t understand that mental health is just as important as physical. I am so frustrated for you that you are having to deal with this. I also want to drop a plane load of Stridex, tampons, fashionable clothes and name brand toiletries on that damn place so the other kids will leave Chickadee alone and let her get better. Mainly, I just want you to have some kind of peace again. I know I’ve told you a million times that it will get better and to hang in there, so many times that I am sure it is starting to sound trite. I truly believe that there is a bright light out there somewhere, it just needs to hurry the hell up. I guess the only thing I can really say is f*** you hard 2012, you are a year that just needs to go away!!!
I’m sorry. I’m sorry for all of this. I’m sorry this sucks for you and for her. I’m sorry the staff doesn’t get it. I’m sorry for how much you are hurting and she is hurting. And more than anything, I want her to get well, and whole, or at least well enough to come home.
I love you Mir, and I’m here, anytime you want to talk.
Praying for you and you family.
I am so sorry your beloved child is ill. It is OUTRAGEOUS that her care is not covered like all other illnesses, and that all of you must endure this impossible situation. Sending admiration and love as you fight the good fight.
…and yesterday, the House of Representatives voted yet again to repeal the Affordable Care Act – because we already have the best healthcare in the world.
I can’t imagine what your world is like right now, all I do know is that it reduces my problems to trivialities.
Keep your chin up and fighting the good fight.
As an accountant, my brain instantly went to perhaps opening a checking account in Chickie’s name only and then transferring the money from her savings into her checking account? Would that work?
This makes me so angry, and is the reason I give it my all to be very vocal about my mental health. Co-workers, family, friends. We all talk ad-nauseum about my in-laws’ diabetes, why isn’t it appropriate to discuss my anxiety or depression issues? Why is it ok for us to take into consideration their diabetes when planning family get-togethers, but heaven forbid we discuss how my anxiety plays into how much we can participate. It is a disease, and just because they can’t run a test like they can for an A1C level or for cancer cells or other sh!t doesn’t make us any less valid as individuals or persons needing proper medical treatment.
I talk about it as much as I can because I deserve better, Chickadee deserves better, our families deserve better. I am so sorry that your family is currently caught in the struggle of government red tape and the lackings that bemoan the mental health community. You are so brave and courageous, though, to keep on fighting and to share some of your story here. I know it doesn’t fix things or make anything better, but over the past few years your words have truly meant so much to me (and I’m sure many others). As someone with a complicated blended family and some personal insecurities, I find voices such as yours to be so empowering and hopeful, and I truly admire your strength.
Continued prayers for all of your family, and hopes Chickadee can get the correct treatment and you all can heal and recuperate.
Oh, holy hell. How AWFUL for Chickadee! Keep being screechy; it can’t hurt and it might help. I’m sorry you have to keep banging your head against this brick wall.
Oh, Mir. Oh my God. That might well be the saddest story I’ve heard in quite a long while. I want to cry for Chickie and every little girl in that place, especially the ones who don’t have a soul in the world that loves them. Hey, is there a way I could send you maybe a gift card to target and you could buy those girls some of their own good stuff so they don’t have to steal hers? Who else is in?
Oh. OH. Oh, Mir. I am so sorry. I am praying for you all, and I’m not even the praying TYPE, but I think that means maybe someone will listen more.
Aside from the obvious horror happening to your family, what I want to do is donate a shitton of name-brand toiletries to residential treatment centers for kids. Because while I recognize that thievery is wrong, my heart also breaks for kids who can’t afford fucking STRIDEX when they are in an awful situation like that.
Oh ffs. When you feel like you are doing the right thing, it gets thrown in your face. I don’t even understand. I’m so very sorry this is happening. It’s not right, it’s not fair.
OMG. I cried too, when I read of the pregnant 12yo. Oh the sheer WRONGNESS of this whole thing, for you and your family but even bigger wrongs are out there, aren’t they?
My church works with homeless men in our area, which is rural and hit particularly hard by the economic crisis. I knew that a large part of the homeless population has mental health issues from statistics but I guess I thought our problem was more about the lack of jobs. But every day, and I mean EVERY DAY, we see someone that we can’t help because what they need is residential mental health treatment. Sometimes we get them in for an evaluation but it’s “drug and release”. Once out, the likelihood of continuing medication is somewhere close to nil. They don’t have family or they have abusive family or maybe family that is at the end of their resources, mentally and financially.
That is all pretty depressing but what I’ve seen is this…the folks who beat back mental illness to the point of being functioning members of society seem to have a few things in common, generally speaking. One, they are smart (Chickie obviously has this covered) and two, they have family who can fight the battles they can’t…with medicaid, the hospitals, the insurance companies. I know it is BEYOND hard and an ever present, never ending stream of issues but you are doing the right things. You are an amazing advocate for your child. Don’t give in, give up or give out. Hebrews 12:12
Mental illness is just that – a sickness and nobody is to blame. But much like the public meltdowns of an Aspie – you still feel like the whole world is watching & judging. You and your family have so much love and uunderstanding heading your way. You are not alone and although you know this logically – I’m gonna put this in big letters – THIS IS NOT YOUR FAULT AND YOU ARE DOING RIGHT BY YOUR DAUGHTER AND FAMILY.
Although the specifics are different, I work in a residential facility and just wanted to say that the squeaky, screechy wheels are what make things happen. Every time. It might not seem like it, but just knowing the someone is checking up and will follow up will make a big difference in the kind of care Chickie gets. I have also seen the getting to know the head of the facility makes a huge difference, because once it gets to that level, people really pay attention. I think that it’s a matter of walking the fine line between getting them to fear you and actively dislike you. As long as you’re reasonable in your expectations (which, you are), then being a little screechy is a good thing.
Also, obviously, there are good and bad case managers, and it might be worth it to call the head of the case management department and ask to be reassigned. Could you request a daily check in with her current case manager at a designated time? It might not hurt to also enlist the services of a patient advocate, just to let them know that you aren’t kidding around.
Anyway…. enough assvice (sorry about that! :-( ). I’m sorry you’re having to navigate this maze of suck. Thinking of you and Chickie often.
What a circlejerk!… actually clusterfuck comes to mind. How is she supposed to get beyond the issues she’s trying to deal with when fifty other issues are thrown at her???…. Insurance in this country is so screwed up… so frustrating that people can’t get the help they need and in a decent environment, one that doesn’t present more problems.
Mir, keep being the squeeky wheel… the screaming siren!… When my daughter awoke from her coma the hospital asked us to look into NURSING HOMES for a 16 year old, because the rehabilitation center didn’t have any beds. ARE YOU KIDDING ME??… I blew a fit, and refused sending a teenager to a nursing home… and miraculously within a week of this circlejerk, a bed opened up in a rehabilitation center in our state. When we finally arrived at the rehab center, there were three beds empty on the TBI ward… not just the one. When I asked why it was so hard to get G*yl*rd to commit to taking my child, they said… we are understaffed, even though there are rooms available for patients, so we don’t take on as many as we could if we had enough help. So apparently some brain injured-in-need-of-therapy patients lanquish in nursing homes instead of getting the help they need in a proper facility.
This is just painful to read. I’m so, so sorry about this on top of everything else. I’m also infuriated at the staff, and I don’t know how you are keeping yourself from pulling her from that place immediately. You’re much stronger than I.
Screech, and screech, and screech again. And again, if that’s what it takes. Meanwhile, I am praying for you and for Chickie and for Monkey and for Otto. Your voice may be the one that helps this nightmare system change.
This is incredibly painful to read. The system is so broken that it’s scary.
I hope that you continue to draw on the strength of strangers like me to continue to fight for your girl. And I’m sorry that it’s not easier.
I wish I had something — anything — to offer. Would it be possible to open up a checking account with Chickadee and transfer the money to that, then write a check to the hospital?
I started to tear up thinking about you and Chickie, and then you wrote about her friend and the tears flowed. So sorry this sucks more than it should already suck. I spend a lot of my laugh reminding myself I’ll probably laugh about some of this some day, but not sure I could keep that up in the face of all you are dealing with.
It isn’t okay. Insurance in this country isn’t okay. The way we deal with anyone who has any mental illness isn’t okay. But hell if I know how to fix it. I wonder sometimes if anyone does. I can for a fact tell you that my mom worked at a residential place in Los Angeles. Or to be real, it was in Malibu. A $40k a month place. Shit like this still happened. The stealing and crap. It makes no sense how people are allowed to stay when that’s what they are doing.
I saw what Chris and Tanis said on Twitter last night about sending all the hoodlums tampons. I’d be in for that. ;) TAMPONS FOR ALL!!!!
Anyway, I hope them locking up her stuff helps and she can start working on getting better instead of just having to work on protecting herself all the time.
I’m really sorry. There isn’t anything contagious about you and or wrong with your parenting. Bad things happen to good people. It would be a better universe if doing things right meant that nothing bad would happen, but this is so not that universe. So, so not. But doing things right and hanging on and loving even when bad things are happening HAS to count for something.
I am so, so sorry you are dealing with this, and that Chickadee is having to try to heal in that environment. I feel bruised just reading about it, but I’m glad you’ve shared this, because just doing so helps people understand, and can help inspire change in the long run. I just wish there was something we could do to help you through the now.
I recall similar fun when my mother was in the hospital – not with fighting or stealing stuff, but just getting someone to CALL BACK and let us know how she was doing, I think you’re doing a fantastic job as an advocate and protector, Mir. Hang in there and keep fighting the good fight.
This so sucks for everyone. It makes me crazy mad with the health care in this country. I want to scream. We hate our elderly, the young and the people with mental illness. My heart goes out to your whole family. I wish I could do something for you. The only thing I can do is pray that Chickie gets better and comes home to you – hopefully soon.
Geez. like she doesn’t already have enough to deal with! Keep fighting the good fight, Mama Bear.
Oh my god. I wish we could all screech effectively for y’all. I wish we could do something more. But at the very least, I am so very sorry that y’all are going through this. Thinking of you often.
I continue to be horrified and outraged at what you and your daughter are enduring. I am very very sorry that any of you have to deal with this crap on top of your daughter’s health problems.
One of the things I learned when Shale was born disabled was that merely learning to live with his conditions and advocating for effective treatments meant that I had to learn how to endure and not let the feelings of being overwhelmed hamper my ability to cope and parent effectively. That my life as his mother now meant I was a marathon runner. And the the further I ran for my child the further away the finish line always seemed to be.
I know that your daughter’s problems are vastly different than any of my children’s are, but it sounds like you’ve just joined the marathon like it or not.
And that makes me sad. However, I’ll be here cheering you on and offering you an assistance I can for as long as you need it. Even if it means stuffing Tampons into a box and smuggling them across the border for you.
Hang tight and love to you my friend.
Awful and shameful that this goes on. I’m so sorry. All of those kids deserve so much better.
Aw, give ’em hell, Mir. We all need to keep screeching, at every level, that THIS IS NOT OKAY. You keep fighting for chickadee and the rest of us will keep fighting to fix the system.
(And, how embarrassing is it that I’m crying in a coffeeshop about that poor 12-year-old girl?)
Ohhhh… thinking of you & sending virtual hugs from ND. I don’t know what else to say but I am praying for you, Chickie & the rest of your family.
You’re doing some very justified screeching….in total agreement here!
Oh I am so sorry! Every time I see a Want Not post pop up on Facebook, or in my reader, every time I see you have a new post, I find myself praying for you and your daughter. My heart just breaks for you guys.
I would highly, highly recommend/encourage you to contact her school district.
She qualifies for an IEP for Emotional Disturbance, and since she will be unable to be served in her own school, you can petition for a residential, therapeutic school placement, with the school district paying for it. I’m a school psychologist, and I wouldn’t be giving you this strong recommendation if I hadn’t seen it work many times.
There are some very, very strong therapeutic, residential schools out there.
Your writing is as eloquent as ever, so may I suggest you take that same post, and send it to the Governor and EVERY state legislator in your state, AND to your senators and representatives. AND…to the consumer protection person at your local TV station.
We need more stories of the hellish hell that patients have to go through reaching the people who are charged with making these regulatory decisions in the absence of any kind of experience. :-(
My heart is angry for you and for Chickie and for all the residents of that facility. :-(
My heart hurts for you and for everyone who finds themselves in this situation. I am so sorry. I hope you feel she’s making progress. It is absolutely NOT OK that she has to deal with things like this, though my guess is even if you had the most fantastic insurance in the world there would probably be an element of it. All you should have to worry about right now is Chickie and Monkey and Otto and yourself (not necessarily in that order). Our system is awful and so many people sit in their ivory suburbs with their cushy insurance plans and have no idea and no interest in having any idea.
You’re in my prayers.
I’m so sorry, Mir. The things I want to say won’t help. I really don’t know what I would do in your situation. I know for certain you are, as always, fighting hard to get Chickie exactly what she needs to get better. I just wish everyone working at her facility was and I wish more that all of those kids (even the mean ones, maybe especially the mean ones) had mothers who loved them as much.
Blergityasdfopihwerpoingpoyadiofuawjer. You’re right that nowhere else is likely to be better. From friends, I understand that even the no-insurance, 3x-as-expensive types of places are prone to violence and theft and general torment, probably in part because the kids there are dealing with OTHER bad shit and need and outlet, and in part because THEY’RE BORED. Even though they need the help and they need to get better and they have activities and therapy of all types and all kinds of other things, it’s not their life that they would prefer to live, and they’re bored. So don’t beat yourself up about not being able to send Chickie to a hoity-toity place. If the staff is good, and they’re doing good work with her, that’s what’s most important. And you are such an amazing mom that you will continue to squeak and squeal and screech until they are so over hearing from you that they just do what you ask them to do to help stop the stealing.
It sucks sucks sucks sucks sucks sucks sucks. And I’m sorry you and Chickie and Otto and Monkey and the kids’ dad and everyone has to go through it, because it SUCKS. And I’m so heartbroken for her friend, the pregnant 12-year-old. Who already has a 2-year-old. I started crying when I read that. That’s just heartbreaking on a level you can’t even explain.
And then tears sprang to my eyes. A baby. At 10. Another on the way. At 12. FUCK. I’d already gone through so many emotions reading this, Mir, that that was just too much. Yes, I know it happens. No, I am not oblivious to things like this occuring in the world, but just…damn. As for Chickie, I don’t think any other sentence explains it better than the one about her having a right to exist there unmolested. It’s that simple. I wish you were more comfortable with her being there. I wish our country’s insurance and health care laws weren’t filled with such absolutely backwards, convoluted crap. I wish so many things, none of which I can make come true for you (other than starting a collective to send down top notch tampons, lotions, and face wash (although yes, I know it’s about more than just the brands)), so it almost feels moot to say I wish these things. But it doesn’t stop me from wishing them.
The screech deserves to be there. The screech needs to be there. Buy some WD-40 to lessen its sound, but not its impact.
Thank you for this wrenching peek into a world I know nothing about. My heart is broken for you, Chickadee and that poor 12-year-old child.
I am reminded of the first year of caring for my very ill father-in-law. It was a maze of doctors, insurance, government programs, and horrifying facilities. Even more horrifying is placing a child in that same scenario.
My very best to you and your family in such a trying time. I am so sorry.
At the risk of adding an irrelevance, it’s highly unlikely that a 12 year old has a 2 year old at home. It’s extremely rare for a ten year old to give birth — and in fact, a recent birth in Colombia actually made international news because the mother was 10.
I am so sorry. I hope that other’s suggestions on here regarding school placement and getting this ADDRESSED might be helpful; I got nothin. This is just outrageous on so many levels.
OK, there was an american girl who gave birth at age 11 in 2010. So, I have to correct myself on the rarity.
Sorry for focusing on irrelevance; I don’t know if it’s good or bad to hear that you really are dealing with the worst that anyone has don’t face these particular major or petty demons. Makes you kind of think you just shouldn’t put any kids in your children’s names and thank you for publicizing the inadequacy of mental health care.
Move her. Crap does happen at places like that, but not to that extent! Also, a good staff is much more pro-active. MOVE HER.
I’ve been there, except with a parent and alzheimer’s… it’s awful and there are no easy answers. I’m so sorry.
I’m so sorry that this situation even exists, for all involved. Wow, just wow.
Reading this makes me so unbelievably sad. Now I want to find the nearest residential facility and drop off face cream and fun magazines and, yes, tampons. Or send them to Chickie’s place. Anyone up to organizing that?
I hate the stigma about mental health in this country, too. My dad once said something very wise. We don’t say “I am flu.” or “I am strep.” We *have* the flu. We *have* strep. Mental issues are due to a chemical/physical thing going wrong in the brain. We should treat them the same way. It shouldn’t be “I am depressed.” or “She’s schizophrenic.” It should be “I have depression.” “She has schizophrenia” Maybe if society would start seeing it as an actual illness, and not a personal flaw, the stigma would go away.
I remember the day I got to spend with y’all, and the funny sweet Chickadee who did such a good job playing and watching over my little girl. I think about it a lot, focusing on it. This is very “woo=woo”, but maybe if I project that image into the universe enough, it will help Chickie find her way back to that.
Just remember a lot of people love you guys, and we would fix this in an instant if we could.
No words…. just hugs and heathly, healing thoughts!!
I’m with Jenn. We all want to do something for you, Mir, but you put the kibosh on monetary donations. Not all of us are fortunate enough to know you in Real Life to drop by some chocolate or a GF casserole or wine. BUT if we could help those neglected girls, maybe that would make C less of a target.
And I also second what Ani (40) said. Make this public. Write to everyone from the mayor on up to Obama. Threaten to talk to the media – then do it. Go public. I can’t imagine how such facilities run, but I do know that a pissed off Mama Grizzly can move mountains. And if moving mountains means threatening people, screeching, or even body slamming some idiots, know that you have a tribe of followers who would gladly cheer you on (and help Otto come up with bail money.)
Much love to all of you.
I am so sorry. I wish there was a magic safe place that took insurance and gave her the space to heal. I hope you start getting answers or a better place opens up for her.
Oh man, the clusterf*ck that is the American healthcare system’s answer to mental illness. Especially pediatric presentations thereof. I am so sorry.
This is one of the reasons I’m so proud of my kids, they advocate the HELL out of mental health issues and neither one has any apparent discomfort in talking about their issues with their peers, or adults, or anyone who will listen.
My family, we’ve turned into vocal, angry, determined advocates, all of us…the kind who go to town and county meetings and call our representatives and even our members of Congress. But change isn’t coming fast enough…children in Chickie’s situation should be able to focus on getting treatment and getting better, period.
I have nothing to offer except sympathy, shared experience with the insurance issues and the advice to start making plans for how to deal with privacy issues when Chickie is over 18. Things get even more complicated then, and some care providers refuse to talk to parents, even when our son has signed the privacy waiver putting us inside his “circle of privacy”.
I am sorry, Mir. I would give a lot if I could make it so that no other parents endure this circle of hell.
My heart hurts so much for you. Having had a bi-polar sister and terribly schizophrenic brother (still living, and I’m his only remaining family member), I can somewhat imagine your pain. I live in fear every day of one of my kids being diagnosed w/mental illness–not for the illness itself so much–but because of the SYSTEM! It’s horrifying. And unfair. And it makes the entire experience 1,000 times worse than just the illness itself.
Sending love & hugs your way… and Chickadee’s…
I third (or fourth, fifth…you get the idea) the concept of going public. Go BIG. Write Obama. Write EVERYONE. The treatment of the mentally ill in this country is shameful. That your daughters personal belongings and SAFETY can’t be guaranteed is so wrong!
I wish there was some way I could help!
Oh, Mir, I am so, so sorry! I wish casseroles and all those other ritual acts of helpfulness would come your way and, indeed, help.
Thank you for sharing this with us. We need to hear it if we are to stand any chance of making things better. (And it sure helps me put my own personal complaints in perspective.)
I’m on the other side of the continent, so I’m going to donate to our local (well, regional) residential care facility, the Northwest Children’s Home: http://www.northwestchildrenshome.org/. Tampons, deodorant, etc – name-brand stuff! I know it won’t “fix” anything or anyone, but, mercy, every little ray of hope or sunshine or happiness has gotta be better than nothing.
For fuck’s sake. What a travesty. And yea Zara! Good advice, hope it helps.
I HATE when you are advocating for your kid because you KNOW it’s the right thing to do and someone tries to deflect you or minimize your concerns. I’m so glad you didn’t back down and you are screeching as loudly as she needs. You are so brave for sharing the dirty details of this journey. People need to hear, they need to know about mental illness. i know informing people isn’t your primary concern. Chickadee is. But the fact that you still take time to share says so much about the person you are. Brave, loving, well beyond pretty.
I have no words of wisdom — just wanted to say that I’m thinking of you & your whole family.
Oh yes — if it will help we will rain down MOUNTAINS of name brand hygiene products upon those children. They will have enough Playtex to last until menopause. Say the word. I love the idea of helping them AND Chickie.
Also, as someone who adopted a foster child. I know how hard it is to work within the system, especially for anything related to mental health. Squeaky wheel is not even the beginning of it. Just keep making the phone calls and baking the muffins and begging for help. I’m praying that you find that one person who will help smooth the path. We had an angel and I know you will find one too.
I am speechless!!!! and sad!!!!! and hurting for your family!!!! I wish I had a magic wand to wave and make it all better, but I don’t so my prayers will have to do. God will help, I promise. Thank you for keeping us informed even if it is painful to do. Hugs to Georgia…….
A living nightmare for all of you.( It’s a whole different thing, but many of the same issues prevail at the other end of life with an elderly parent – the struggles to get Medicaid coverage for the nursing home, the other residents stealing everything. It’s a totally feral society.) Zara’s advice looks good – I hope it’s useful for you. Don’t relent, even for a moment in Mama Bearness. Your daughter knows you’re fighting for her.
Damn. I just … I don’t know. I can’t think straight after reading this.
I am so sorry.
This is likely a dumb question, but have you consulted a social worker about the Medicaid maze? If the hospital does not have one on staff, many organizations hire social workers to run hotlines. You may want to try calling the local suicide hotline to see if they offer free social working advice or know of a place that does.
My organization only works with older populations that face different Medicaid problems, but our social workers advise our patients all the time… I know we aren’t the only ones out there that do this.
Wishing you all the best from Miami.
You are in my thoughts multiple times a day. That can’t possibly help, but still. I am so sorry.
Aww Mir, so heartbreaking. I just wanted to say that I have been keeping you all in my thoughts and hoping for the best. Not commenting much cause I’m dealing with our own crap and feeling anti-social. But I wanted you to know that no stigma is scaring me off ;) Though I totally know what you mean, half the people who ask about and hear about my younger son’s rare genetic condition, kinda glaze over, look nervous and back away cause they don’t know what to say. Hoping that things turn around soon and keep fighting Mama Bear because I agree with you, how can she deal with her issues if she’s having all these new issues crop up and not feeling safe and secure. Good luck. And keep looking after yourself too (loved your blog on the oxygen mask btw).
It’s like you’re living that movie “Girl, Interrupted,” in the lesser known role of the unseen mother scared witless about her daughter’s well being, and damn if I don’t wish that [historical] fiction didn’t [still] resemble fact so closely.
This whole post breaks my hear, Mir. Especially the pregnant friend bit. I pray, albeit with a heavy heart, that the girl at least feels as if she was consenting (though there is no way in hell a 9-10 yr/old understands the implications enough to legitimately consent) to the sex acts involved, and that she was not forced into them via abuse or circumstance.
Itâ€™s funny where you find comfort in a time like this, but her mom and I smile at each other in the dingy little cafeteria during visitation. We are secret allies. Our girls are loved, we are whispering it to them every week, hoping our mere presence reminds them that a better life is waiting for them when theyâ€™re well enough to come home. THAT. That was comforting and I hope you cling to that, fiercely. I hope you can find something resembling options that may be available to you re: moving, because I would hate for the sense of helplessness, real or perceived, to prevent any potential resolutions that may not yet be on the radar.
You are doing your best, Mir. And that’s all you can ask of yourself, honey. You’re in my prayers.
If it were my 12 year old (yes I do have one) I would get her out of there at any cost. Second mortgage, third mortgage, sell an arm . . . .
I’m still thinking of this. I can’t get Chickie out of my mind. Is there any way some of those fancy, safer places have (for lack of a better word) “scholarships”? Do they ever take people pro bono? Chickie isn’t a discipline case, she isn’t a criminal in training. She needs help, treatment not more problems. Please don’t take this as criticism. I don’t think there is a better advocate for her than you. I wish there was some way for her to get the help she needs without ruining you financially or putting her at risk.
OMG Mir. I’m so sorry.
I know I keep leaving the same comment but I will say it again:
I am so sorry. I wish healthcare in this country made more sense. You are all in my thoughts and prayers.
I know you didn’t post this to get a shitload of sympathy, but my God! I don’t even have words like some of your eloquent commenters. I am just so terribly sorry for all of you and hope Chickie gets well enough (and stays well) to come home soon. And Secret does make an invisible deodorant, ya know. :)
Dammit, Mir, give me the name and I’ll buy the entire place a gross of Tampax. Super, Regular, Super Plus even. Then maybe they’ll leave poor Chickie’s stuff alone.
My heart aches for you and your little girl. And for those children who have no one.
Much love to you!
Oh, oh, oh, I am so sorry for what you guys are going through. It’s so far beyond awful that I can’t quite comprehend it. If you need to hear it, you are right and they are wrong and keep doing what you’re doing!
Sending you so many hugs, I don’t even know how to ship ’em.
Mir, I am so sorry for what you all are going thru. Your love and fierceness are evident and that’s what’s necessary. Stay the course, Mama Bear.
The banking thing is just… Kafkaesque. Surely they could do a wire transfer directly to the hospital??? This makes no sense to me whatsoever.
I’m so, so sorry.
I ache for her- for the other girls- for you. I am taking all of my surplus supplies to somebody, somewhere- so help me.
And it all comes down to what you said in the beginning of this post: Health care in America SUCKS. You’d be better off moving to Canada or Taiwan or France or Australia. I know you’re busy, but take 5 seconds to find your Congressperson’s website and urge him/her to support HR 676, a bill that is introduced in every new Congressional session which would create a Medicare-for-All system right here in the United States. We need it. You need it. Chickadee needs it. My heart is breaking for all of you.
Poor Chickadee. Poor kids. The thought of 95 teenagers getting no visitors is unspeakably awful. And a pregnant mentally ill 12 year old. Life is beyond unfair.
I guess the staff get to see everything so a bit of theft doesn’t rattle them. Just because they know how to cope doesn’t mean kids like Chickadee do!
I can’t do anything but offer sympathy and prayers – but those are all yours. Hang in there, she’ll get through.
It blows – mightily. Keep after them, don’t let up. You will prevail and she will get better. Hang in there – she really needs you!
I’ve been reading; but not commenting. I couldn’t last anymore with this post; it had me in tears; not just for the obvious reasons but because I was in a place like this at 15 years of age with an eating disorder and suicidal tendencies – this was back in the 1990’s. The hospital I was in; however seems a bit better, not so institutionalized and did accept some private insurance.
I am afraid for your Chickadee. Plain terrified. I was also attacked by a patient 10x the size of myself with a plastic knife as she, an obsese girl, sat on an anorexic girl of 82 lbs and kept stabbing her (they didn’t move me to the ED Unit for weeks) and the staff took their sweet-ass time breaking it up, despite my muderous screams – my left hip broke. My parents horrified and ready with lawsuit that did go to court, still kept me in and when I finally told them everything, they needed major therapy themselves – I never said anything because I was afraid they would not believe me.
Male nurses were sexual predators of girls, even some female nurses. They watched us shower and go to the bathroom everyday and not all turned away for the “we’re here for your safety” issue.
Boys and girls were on opposite wings but the same floor – meals and group “activities, ” TV time and found ways to get together, read: pubscent interest. The kids would band together and find ways of cheating the system. They created gangs and would pick on the poor “rich” girl and/or boy that came in. They stole, just as you have written, regardless of economic background.
Doctors manipulated patients to get them to stay longer and trick their young minds into saying things. Patients, naturally, tried to manipulate the doctors. Virgin girls were given gynocological exams when not needed and parents not told.
G-d, I could go on and on and on and I am in no way articulating myself eloquently here; I’m having PTSD reading this, but I firmly believe you HAVE to find a way to get her into a better place. And to think I was in a semi-private psychiatric hospital! My heart breaks for you as a Mom and I know you are doing all you can and what you think best, but PLEASE stay on top of these people! I know there are people and doctors who do care but you just can’t trust ANYbody in a situation like this. Even if the place were the Taj Mahal of mental hospitals.
I am 37 years old and still have nightmares from this experience. The relieving aspect I can tell you is that I am a successful, professional adult who made it – went to college, grad school, found a rewarding career and overcame some major obstacles. I still struggle with depression and always will but it is under control and has been for over a decade.
Keep the vigilience. You have my e-mail if you want to contact me.
i was a mess writing this; so forgive any typos.
No, just…no. It’s all crappy. Really, there’s no way to spin this and nothing I can say. We’re here for you.
A whole new level of suckitude, and not something you can really bitch about with the soccer moms. Mir,, you are not alone in this battle.
Oh poor Mir! I don’t know what to say. I know what you’re talking about. My, then 8 year old, stepdaughter was in a psychiatric hospital twice last year. 9 days and 10 days. Because that’s what Medicaid covers here, unless the kid is threatening to kill herself or others.
They told me straight out: we only do crisis management, nothing more. She was at 2 different facilities. Both were heartbreaking. I recognize your stories.
My girl had less problems than Chickie and she is doing reasonably fine now.
But I fear for you and Chickie. Healthcare in this country sucks! (I’m European)
Sending you all my love!
Oh Mir. I don’t know not anything about this but the idea about a residential school seems to be worth pursuing. I have had a series of long, not so good days but can’t imagine the challenge you have to keep going and fighting in the face of this suckatude for so very long. I will add my voice to the “hang in there” and “keep trying” chorus and would humbly say even if you don’t want to ask us for help, if there was ever something we could do for Chickie or a certain residential facility for no particular reason, I am confident that there a large number of people who would step up.
Alas, I am only an internet or I would bring you my fabulous GF red velvet cupcakes over or a similar chocolate or wine treat. Instead I will offer hugs and prayers all around.
I’m sorry. Hang in there.
Oh sweet Mir! I so hoped you wouldn’t go through that part of ” the circuit”. I have no idea if this will come as welcome assvice or not, but as someone who has been there, I will say this… My chickie did her first “circuit” with me being the squeaky wheel and screaming harpy. When it came time for the second circuit I lawyered up. This was easier for me than most as I’ve spent my adult life in the legal field so had a contingent of attorneys willing to do this for me, but here is what I found out, and what you already know. Lawyers are scary as hell to them. That meant they were damn sure to make sure no-one tried to steal from or pound on my little one.
Please don’t get me wrong, I dont advocate suing medical providers all willy nilly and I won’t start a debate here about how broken our legal system may be, but when you have to EXPLAIN to a mental health professional that being unable to sleep because her roomie keeps trying to kill her, that maybe her “healing” won’t start until she’s fricking safe in her own bed, then as far as I’m concerned it’s time to bring on the scary people until they figure out that you are paying attention and actually give a shit.
I’m happy to share the specifics via email if you decide to go that route.
Ugh. Sucks doesn’t even begin to cover what you’re describing, and J’s comment…ugh. I’m so sorry, and my prayers suddenly feel inadequate.
Oh Mir. I’m so sorry sweetie. I wish there was something – anything! – I could do for you guys. Someday, if I ever get a job where I can get some experience and maybe even more school (yaaaaay :P) I will be helping kids like Chickie. I hope I can be one of the good ones.
That is incredible. Keep being the squeaky wheel. She needs you and while you can’t solve the big issues, maybe some little ones can be fixed for her and others too even.
Mir, also on the bank account issue, two thoughts occurred to me (both you’ve probably thought of, so I apologize) but if you opened an on line checking account in both your names and transferred the money there, would that be ok? Then you could pay down the hospital that way? Not that you want to give them more money, but it is a means to an end. The second thought was can you open a restricted account in her name and transfer the money there? Restricted accounts can carry more weight with government entities because, depending on the laws of your state, that money can only be used for her benefit.
Oh and big hugs, hopeful thoughts and lots of wine and chocolate (virtual of course) headed your way.
what could possibly said that hasn’t been said by others? i don’t really know, but somehow want you to know that you are loved and you aren’t alone. still praying for you all.
Can’t you take out a second mortgage or loan to pay for the better place? Sounds like that place is worse than nothing.
and I will just sit back here in Australia and hold your virtual hand. xx
I’m glad you have somewhere to vent a little, at least. I ditto what everyone else said, and like zara’s (#39) residential school suggestion, it sounds worth looking into.
meanwhile, more hugs.
I would like to say “I can’t imagine” what you are going through, but unfortunately, I can and do on a regular basis, as I have a son who is recently identified as bipolar and I quake in my boots worrying about what is going to manifest with the coming hormonal storms of adolescence.
I think of you often, know that holding it together is a moment by moment thing. The only upside of the horrorshow that is the medical establishment and insurance and government Medicaid insanity is that dealing with it all keeps you busy, gives you something concrete to focus on and an appropriate target for all your anger and vexation.
Don’t even get me started on how different mental health facilities and services should and could be. We have a serious serious problem in this country and no one is “getting it” We would rather fill up jails (and morgues) than properly treat people who need help. And the stigma? Just wrong in every way. This will change some day, I am sure of it – remember, cancer used to be thought of as something shameful and dirty, to be kept private and hidden – but just not soon enough.
A thousand hugs.
I am so sorry to hear about the nightmare that is this residential placement. I hope all the comments above give you some addition directions to explore to find a less horrible situation for Chickie. Wish we could help out and do some of the leg work for you…
Continued thoughts and prayers coming for you all.
I am so very sorry that this horrible shit is happening, I can’t even begin to express it. You are awesome, and Chickie is so lucky to have you as her mom.
With your talent and brains and heart, it’s almost like you’ve been chosen to become the advocate for these kids, and really anyone dealing with mental illness. Maybe sending this post as a letter to your congressman and also to the director of Chickie’s facility and her school district would get someone to get off their ass for you.
Meanwhile, I agree with everyone else–if you tell us where they should go, we will rain down hygiene products and clothing and whatever else these kids need.
Good Lord. It is horrifying.
You guys are all in my prayers. Keep giving them hell, and by all means, whatever we can do, just let us know.
Oh no. I am so, so sorry. Our health system is so completely broken it defies description. I have another friend whose teenage son is bipolar, and we spent a couple of hours with her last Saturday. Her frustration is similar to yours. There’s a stigma there regarding mental health that just shouldn’t be there, full stop. I don’t understand why treatment for mental health is so limited when the repercussions of not treating it are so serious. My heart just breaks for you and Chickadee. Chickadee shouldn’t have to worry about her stuff being stolen, but it also makes me sad that the other girls don’t have visitors or “fancy” things like Stridex. When will we wake up?
I am glad that Chickadee has such a fierce mama bear to fight for her.
My thoughts and prayers are with you all.
Oops, hit enter too soon. The former should have ended with:
I am so sorry for your loss of normalcy, the mental anguish you are going through, and having to deal with the “stigma” (read: ignorant judgement) of a mental illness in the family. Hang in there.
the medicaid maze – ick. makes you certain all bureaucrats are named Yossarian. Do work with a lawyer and social worker – no ordinary citizen can figure that maze. 3rd semester calculus is way easier. you do have to get denied first, and do make sure they look at disability for the future. payments and benefits will depend on how much money is in your child’s name. we foolishly lived frugally all our lives to save up for college for our kids and their grandparents set aside accounts for them, too. so, now my 24yo son’s SSDI payments to live on are (drumroll) $420 a month. The best we can do is lock up all that money in a state trust (check your state – that’s where the lawyer and social worker are better than a PhD in engineering). my son can then spend down that money on one-time purchases like a car, but not on food or medicine. however, that allows him to get larger living allowance.
for those curious, how much are those meds that don’t cure you? remember, it’s like diabetes, it doesn’t get cured, it only gets managed. my son is on Three (3) different ones. One (1) of them is $600 a month…a bit more than $420/mo.
how much is that facility? that was more than several thousand a night for 10 days. you could spend a week in a 4 star hotel in hawaii for less. So, no, not even a second mortgage will cover that. especially since it has happened more than once.
The best help we got was a private non-profit organization in our state providing mental health and drug counseling. a lot of their clients are those families like you described, but they know how to get you through the system to be able to afford to care for your child.
our state also has a state insurance pool for those low-income and/or disability. you have to pay premiums etc, and it’s not cheap, but it’s cheaper than trying to get a policy for an adult child – and, yes, guess what! the very word “schizophrenia” is an automatic denial for any other insurance! few people have hung up on me quite that fast.
The next best help I got was our tiny NAMI chapter – national alliance for mental illness. those parents and patients have done all this and can give the tips and tricks that work for that side of the problem, and they will understand how special the reply “still alive” is for those who ask how your kid is.
then, “Surviving Schizophrenia” by E. Fuller Torrey, updated. maybe different diagnosis, but he has Tons of references, lists, chapters, on the nuts and bolts of mental health care, like, what sorts of questions do you ask a care facility, what sorts of things should you do with your will about this, how to be an effective squeaker, what are legitimate tricks to get your loved one to comply…the sorts of things that are appropriate for caregivers of loved ones with severe mental illness (you can’t legally Make adults get help, even if it’s best for them). quite often, the providers would like to do better, but don’t have the resources. squeaking can help them apply for it.
then, yeah, find some way to donate to these places. i know that, regardless of how many bath products i buy my son, personal hygiene is an issue. but….i still make up “welcome packets” for the sort of halfway house apartments the above facility runs for their mental health clients who have progressed enough to work on life skills. for those who don’t have caring family, i figure it helps them get started on their own without having to buy a lot of boring, basic stuff right off. maybe it makes it a little easier. the facility also appreciates money, so they can buy things for the common room, or food, since they prepare a daily snack for that room. it’s a relatively good facility – the clients have to pay rent and utilities, but qualify for assistance, but, they also have to comply with treatment. so care, but responsibility, too. no, my son doesn’t want to be there. stigma. it’s a small population, so everyone knows that address. sigh.
hugs and more hugs
skubitwo — having exceeded her word allotment for the day
Ah, Mir, I too had hoped that you would somehow miss this part of the circuit, but I know a very few (mostly VERY wealthy, and even not always those) who do.
You will hear often “pull her out” or “go somewhere else” – but the truth that you already are finding is that “somewhere else” often does not exist or is not better. Pulling her out would have even more tragic consequences for you and for her.
Hear this: you are doing what you can and should do.
Be the persistent squeaky wheel. I’ve worked with the population you are seeing now, and those parents who squeaked got attention – not miracles, but attention.
Be logical (it is very logical that if C can’t feel physically safe, there’s precious little energy for psychological work) and question.
Assume that most of what you hear from all sides has some bias to it (especially if C gets a whiff that what she reports makes it at all likely that you will pull her – you will immediately hear more and more….possibly true, possibly not).
Explore all options. Ask everyone questions – what would you do? What have others done? Who else can I call? What else can I read? Answers come in strange places.
Take care of yourself, and your family.
Cut yourself a little slack.
PS – Can you get the savings account bank to write a money order directly to the hospital?
I really am so sorry, Mir. Reading this just breaks my heart, in a lot of pieces for a lot of different reasons. Big hugs and prayers to you and your family.
GOD, that is horrifying and heartbreaking. I am SO SORRY.
(And if you do have any lawyer friends willing to write letters — sometimes that helps with red tape and response times, though I’m sure you know that already. I am a lawyer, though not one that ever has anything remotely to do with health care, and when we were trying to access my grandmother’s pension and medicaid benefits to pay for her housing and medications (as she is practically deaf and not always completely rational, she could not do it herself) there were several occasions when my writing letters on official letterhead and representing myself as her attorney broke a logjam or two. Always temporarily, but…)
Anyway. I am SO SORRY. This should not be happening to you guys or to anyone.
Oh Mir – I’m so sorry. I know there’s nothing any of us can say or do that will make it feel better or be better, except that we will be praying for all of you. And give them hell, Mama – defend your Chickie!
Thinking of you and Chickie and all of you so much, Mir.
I’m so sorry that this added horrible situation is there for you to deal with, on top of her illness, idiots who act differently than they would if it were cancer, and everything else.
wishing you improvements, progress, and the day when this is just a lousy memory for you and for Chickie when she’s home.
Add me to the mob of well-wishers looking for direction. I have some time and some money — how can we help? It’s too hard to keep reading this and getting my heart broken over and over without something to DO. How can we help?
I can’t not name which one pissed me off the most in this post. My heart is breaking for you… I think it’s a tie of some horrible things, but really that people avoid you is possibly the worse, because you need a local support system. That Chickie has to face soooo many problems and all she gets is worthless lip service from those who are suppose to be helping her…. oh my friggin’ #@!! that a Therapist would blow you and the chain of events off as deflection is an act of delirection on their part.
Jenn is spot on, be squeaky, be loud, and climb your ass up that ladder. A patient advocate is an excellent idea.
My prayers and thoughts continue to be with you, Chicke and Otto and Monkey. Do give up girl.
There are no words. I just have no way to say how sorry I am, how much I wish that there was SOMETHING I could do for you, for your daughter, for that other girl, for all of them to make life better and easier and beautiful somehow.
I’m sorry falls so short to describe how I feel about this terrible maelstrom you are living through and trying to navigate. I agree with everyone who has told you to keep screeching — it’s the only way to be heard in a system like the one you’re forced to be in. I have no answers for the financial and insurance snafus you’re fighting, but your instincts are the best. Keep going with your gut. Go public, go to the highest levels, keep making it clear that you will not be going away until your child gets the best possible care and protection she deserves. You are a great mom. You are a great mom.
Ahhh sweetie…my heart hurts for you
Honestly, I don’t know how you’re functioning. I can’t imagine how I would handle my kid being in a full time facility. Devastated I’m sure. As a mom, all you want to do is fix it & make it better. When it’s something like this, I just can’t being to fathom how awful this must be for you. And to add insult to injury, she gets beat up? And now is getting her stuff taken? After the pounding, I’m not sure how you didn’t go pull her out right there an then. And to have the dr deflect your concerns as her being a bit of a drama queen? I would’ve lost my shit, seriously. You are a stronger woman than I, I know that for sure.
I haven’t blogged for a month because of stuff going on w/my kids. And ours is tip of the iceberg stuff. Hopefully, we’re catching it in time before it becomes more serious. But the amount of info to bring my blog up to speed, and the idea that writing it down somehow makes it more real, overwhelms me. So I play another game of scramble on my phone & go to bed. I need to write it out, I was updating my oldest’s therapist last week and was surprised at some of the conclusions/concerns about her. I need to write, for that clarity. To keep me on track & save my sanity. But it somehow seems more real & it’s already so scarey to me.
Hang in there. I don’t know how you do it, but I’m grateful you do. Lots of us are praying for all of you. Know you aren’t alone in this. (((hugs)))
My heart just breaks for your family.. All the positive energy I have and prayers for you and chickie..
I’m so sorry, there really are no words. Hugs.
Thought about the bank account…can you contact your local govt. officials to help with the govt.’s rules about the bank account? Maybe they could clear (some) red tape for you. You are in my prayers. Hang in there!
Mir. Another thought about the bank account. Have you looked into a special needs trust? This protects assets that belong to chickie while still allowing her to qualify for assistance. Some financial planners can help setting those up without the need for an attorney.
Just a thought. Still sending hugs and love.
Chickie is lucky to have you as her advocate. She may not say so, but inside she knows that.
I am checking with my husband to see if we can offer any advice on the MA and SSDI front. We are in the process of applying on behalf of my 20yo: blind, Asperger’s. In the infinite wisdom of the governmental agency, they do not recognize power of attorney. We do not have guardianship because, doh!, he’s competent. But does SSDI/ MA send documents in Braille? Nope.
Sorry. That pales in comparison to your very real troubles. I wish we lived closer so I could hug you every day and buy more shampoo for your daughter.
I am so sorry. My heart hurts for you and your family.
Thinking of you. Hoping for an outcome in which Chickie and the whole family can find relief.
Not that you guys have the money for this at all right now, but maybe if you put together a little hygiene kit for each girl in her unit (assuming it’s not too many) with some of the “fancy” name-brand stuff, it might prevent them from stealing her stuff. At the very least maybe they would steal from each other and leave Chickie’s stuff alone. It might do wonders for making them feel loved and accepted for a bit, too.
I am so SORRY Mir. I have the unfortunate circumstance of understanding what you and your daughter are going through first hand. I had a bit of a breakdown due to many colliding conditions (stopped taking my depressants cold turkey just when marriage hit a bump plus kid issues) and ended up on a 72 hr hold close by our home. In fact I had worked at the attached very nice hospital a few years before but never knew about this place. My dh is a very highly paid attorney and we have the best insurance money can buy however the place/experience was horrible. At the end of the 72 hrs, they, of course, thought I should stay (it seemed that since I have good insurance they wanted me to stay to get the $) but luckily my atty hubby was an attack dog and rounded up the Dr. in charge and the head of the place and read them the riot act. They backed down and let me go home. I have never felt capable of discussing my experience with the exception of my dh because of the shame and embarrassment of having to go there. I had some memorable experiences: for example, I had to beg a man/worker a few times very loudly (he pretended he couldn’t hear me when I was 1 1/2 feet away) for my tampons when I started my period while I was there. The food was not very good (ok it was horrible but my dh brought me anything I wanted) and the baked cookies for the patients were eaten by the staff before they made it to the cafeteria but boy they sure smelled good. While I was there, I somehow got UTI, WELL you should have heard the tone in the psychiatrist’s voice when he asked me how that happened! Honestly, I don’t get them very often so I imagine it was stress but he inferred something unseemly (only slept w my dh for past 30 yrs and he had been away on business). This is the psychiatrist I saw two times for less than five minutes during my stay but he was there to make important decisions and help me? The staff insisted I was going through DT’s when I wasn’t. I had consumed about 3/4 of a bottle of wine which was not normal for me. When I refused sleep medication (I have never taken more that Ibuprofen and a depressant) they were very upset. Due to the fact that I was sleeping on a plastic squeaky mattress which made enormous noise every time I moved plus the fact that the staff comes into the room every few hours all night with a flashlight plus the fact I was very unhappy to be there, my blood pressure rose above normal. I know this was due to NO SLEEP. But the nurses (I don’t even know if they are actually RN’s) who give out the medicine insisted I take bp medicine on my release day and were using the fact that I was hesitant to say I should stay longer. I can understand how some of the patients needed to be there and it would be helpful. I also enjoyed some of the therapists group classes. Unfortunately, I spoke to a few women who ended up there (one had checked herself in and one, when she told her gyno she was very depressed and had suicidal thoughts, was put in) and were just trying to get out. I also befriended a few women (one very young and one older) who were going to be stuck there for a long time (they told me @ 6 months) and seemed to be helpless to me. Anyway, I think that the power held by the staff over the patients was scary. I don’t know if this was any kind of help but I am here if you think there is any way I can help you. It would be obvious from my email how to get in touch with me : ) C
HANG IN THERE. YOU ARE TOUGH AND SO IS SHE. THIS SUCKS. LIFE SUCKS. you will be ok and so will she. my (very wise) (in my old age) mom always says “this too shall pass” and she is right.
In the end you will have one beautiful young woman with some stories to tell, and possibly a streetwise Aspie to boot. I knew your kid was gifted. She has so much spunk and spark, I just know she will pull through this hell and come out all the stronger. Sounds like you are getting stronger every day too, whether you like it or not. And that quality is so very pretty. Hang in there, Mir – you are already doing what you have to do.
I’m in as far as donating personal hygiene products to the girls on the wing, so they leave Chickie and her items alone. I’m willing to bet we could get some of it donated by the manufacturers. Mir, you know how to reach me – let me know if you want me to do some legwork on this.
And I’m a firm believer in squeaking away as long and as loud as I can.
Sending love & hugs to you all (and ready to send body wash & Stridex & tampons!)
I will help in whatever way you need, too, Mir. I cannot tell you how sorry I am that you are having so much…drama. Sending every prayer and good thought your way.
I am so, so sorry for all that you…the whole family…is having to deal with right now. Just the thought of Chickie being physically hurt at the hands of another makes me feel like throwing up. Continue to be the squeaky wheel! Squeak, screech, squeal and scream. Make no apologies and feel NO guilt for doing so. It’s what moms DO! And you are a good, GOOD mom!
Thank you for sharing. It takes courage and you are brave for including us, your online family, in what is happening. You have so much to think about and there are many great suggestions left by other commenters to consider. I know you will explore all possibilities and do what is best for your darling girl.
Like you, we feel so helpless. I know we all would like to reach out and share a bottle of wine with you and have a good cry. I’d like to take Monkey out for ice cream. I want to bring you some gf cookies and send Chickie a care package of Stridex and Tampax. I’d like you to lean on us. We care!
Would you consider starting a donation fund for Chickie? I might not be able to come over with a casserole, but if I could dump $50 into a PayPal account, I’d like you to use it for WHATEVER you might need. Groceries, hospital bills, take-out, doggie food, meds, gas, Stridex…I don’t care. Anything that would lighten the load for you and Otto so that you can focus on the only thing that matters…getting Chicke better and home and being a family. Think about it? Let us know. We’re here and we love you!
Melissa from MD back again with what I hope is not assvice:
(1) If the facility is accredited with some national body (CARF, JHACO, etc.) tell the staff that you are concerned that any incident of this nature is injurious to their accreditation as safety is a major driver.
(2) adverse incidents are usually required by state law to be reported. Sometimes these just include drug interactions or patient self-harm but not always. Ask what the adverse event reporting in your state requires and whether this incident was included in that reporting. You’re aiming to show you’re on top of it.
(3) Re: sending the other kid to juvy. She may be at the facility in lieu of juvy. Some children are ordered into residential treatment prior to being placed with treatment foster care or in a therapeutic group home. Some juvenile facilities have security and walls and such for kids with *very* serious behavioral issues (not that assault isn’t serious so much as not as serious as youthful sexual offenders or firestarters). For other kids involved in the juvenile welfare system, treatment often is where the court or child-serving agency has agreed they should be.
(4) Re: The account. Ask your state Medicaid office/caseworker if they can get a variance on withdrawing the money from the state attorney general. Most states have AGs who deal specifically with Medicaid. See if one would weigh in. if not, try your CMS regional office: http://www.cms.gov/About-CMS/Agency-Information/RegionalOffices/Downloads/AtlantaRegionalOffice.pdf Now, the folks at CMS tend to be…prickly so don’t expect much help but tell your state office that you’ve found their help unsatisfactory and have contacted the regional administrator’s office.
(5) I’ll echo others in saying the squeaky wheel gets fixed. Eventually.
Hang in there.
Wow. Reading this just made me feel sick – so I can just begin to imagine what your insides are like. Just hearing about it fills me with rage.
It’s not right; if it’s the “status quo” it is NOT ok. I wonder if the other families you see every week are feeling the same frustration.
Along with everyone else here, sending love and supportive thoughts. And hopes that the rage will fuel change.
I haven’t read through all the comments, but I read your entry. I’m afraid my eyes were rolling and not in your direction. I feel for you as I have also had a child institutionalized, for different reasons. Those places are rough for everyone involved. There are probably many children there that have many different problems. Maybe they don’t have social skills or maybe have other problems that keep them from “behaving” in ways that society finds “acceptable”, maybe that’s why they are there? Seems like your daughter has things they want and covet, and while it’s no excuse, it’s understandable. They are not attending a tea party and I the facility probably has a lot of fires that they are trying to put out…24/7.
Oh. My. Friend.
I don’t have words.
I wish my heart could just write for me.
SO much love to you and chickadee.. I cannot fathom.
I’m so far away, yet if there’s anything… anything…. let me know.
It’s been a really long time since you and I spoke, and truly, I couldn’t read about your daughter, and say nothing. Whatever transpired between us doesn’t matter. My heart goes out to you, and I hope so very much that there’s a light at the end of this tunnel very soon.