As Good As It Gets

Usually when I write, I try to come up with some kind of lesson, something I’m supposed to learn, some bigger picture reason for why things happen the way they happen. Today, though, I’m just amazingly angry.

I just left T, my 10-year-old, at inpatient psychiatric care for the second time since November. It’s her third stay – the first one was a little over a year ago. She arrived at psychiatric care via a police patrol car. The same incredibly kind police officer who showed up at our house last Tuesday (five days ago) called me after she heard our address on her radio today and said “I’m on my way. I heard dispatch give your address, and I said “I know that kid.” I’m coming over.” By the time she arrived, I was drenched in sweat, shaking, afraid I might be having a heart attack, and pushing with all the strength I had left in my legs to keep our attic door closed as T threw her weight against it from the other side, as she screamed and yelled to be let out and kicked holes in it. She hurled her tiny little 10-year-old body like a weapon against the years of abuse and neglect that she suffered and can’t escape, though she’s been safe, loved and cared for for almost four years.

That’s where I find myself more and more lately. Sweating, exhausted, terrified and praying to God that my daughter doesn’t get out of wherever I’ve been lucky enough to trap her and accidentally break her neck or throw herself into the covered pool and drown. For years she would at least stay in her room while she was raging, which provided some level of safety. But over the last few months, she leaves her room, roams the house, the yard and our neighborhood if I don’t physically restrain her, which is getting harder and harder. Last Tuesday, with both my husband and I home, she managed to throw her closet door down the stairs, nearly falling down with it, then get out the back door, narrowly miss falling into the covered pool, out the gate, and run down the street wailing hysterically and tearing off her clothes. My husband and I stood in the driveway, knowing if we chased after her it would only get worse. So, we stood, feeling hopeless, doing nothing, hoping the police arrived soon.

So, here’s where I have to ask, how in the hell is this as good as it gets for mentally ill children in this country? I read with both horror and relief  “Thinking the Unthinkable” by the Anarchist Soccer Mom where she writes “I am sharing this story because I am Adam Lanza’s mother,” and I thought, “yeah, that’s me. Is my kid the next one on the national news?”And I know a lot of other parents who are thinking the same thing.

My husband and I both have advanced degrees, we make what is an upper income for the state in which we live, we’re resourceful, and I’m assertive to the point that I’m sure I’ve been called a b*tch more than once. I’ve got a great supportive network, including a wonderful extended family, and I’ve read every book I can find on Reactive Attachment Disorder (her diagnosis). She has therapy weekly, takes medication, sees a good psychiatrist, and is on the waiting list for the Reactive Attachment Disorder (RAD) unit in our community. Though the RAD unit has a good reputation, there aren’t very many beds, and the stay there is a minimum of 6 months, so the beds don’t open up often.

There’s not much written about her diagnosis – in fact if you read attachment texts it’s generally not covered. My kids’ therapist has asked to write his doctoral thesis on our family, because both of my girls have RAD diagnoses, and in his words “are not burning down our house nor stabbing us to death in our sleep,” so we must be doing something right. So, basically, I’m the Mrs. Cleaver of the RAD set. I’m the Mrs. Cleaver, and I still can’t help my kid. I’m doing every damn thing I can think of, and I still can not help my kid.

In ten days, the psychiatric hospital will likely send T home, because she will no longer be “acute,” – no longer a danger to herself nor others. T can do 10 days in a psych ward like it’s Six Flags. She won’t show any of her defiance. She’ll be a super sweet kiddo, because she’s smart and she knows how the system works, and she wants to be in control. In foster/adoptive circles, we call this the honeymoon. If she didn’t have a RAD diagnosis, she’d be stepped down into residential care once she was no longer acute. But, because she has a RAD diagnosis, the hospital will send her home, because they know they can’t help her in the 90 days or so they could keep her and actually get paid. They know she needs the RAD unit (6 months to 2 years). So, they’ll send her home, and she’ll continue to have rages that require police intervention once a week, with no end in site, and it will traumatize my two other already traumatized children and stress my marriage and slowly but surely destroy our family. And, the best I can hope for is that she doesn’t hurt anyone else. And, this is as good as it gets.

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As Good As It Gets

44 thoughts on “As Good As It Gets

  1. Oh my dear… I’m so sorry you are going through this. I’m glad you have this blog to share with us what you are going through. I’m so far removed from anything like this. I have nothing to offer other than just know I’m there for you… in some way…what I don’t know. Be careful please.

    1. Leslie, just sharing the post would be wonderful, if you’ve not already. I’d just really like to get a conversation going about this topic. Any influence you would be willing to put toward it would be wonderful. Thank you.

  2. Mark Christian says:

    I’m not sure how much the prayers of a Unitarian minister are worth but you have every ounce of care I can offer. You and your husband are dear souls and pray you better times/

  3. Sara Barnett says:

    Shelley,
    For some reason your name on a mutual friends FB post stuck out to me…and after reading your story, I’m glad it did.
    I believe we worked in the same circles several years ago. I just wanted to say thanks for sharing, because without people willing to share their stories the rest of us are simply unaware. I hope and pray that something changes to benefit your family soon, I can only imagine your frustration.
    Keep researching, fighting, making changes, shedding light, anything and everything. It’s parents like you that pave the way.
    I’ll be praying. Hang in there.
    Sara Barnett

    1. Thank you for taking the time to read and to post this thoughtful reply. Please share my blog if you feel comfortable doing so. There are so many moms and dads like me in the world. We have to get a conversation going soon.

      1. Sara Barnett says:

        Absolutely! I have shared and emailed links to family and friends.
        The conversations have definitely been started!

  4. Elle says:

    I’m not too far removed from a very similar situation. It’s tough. Really tough. My heart goes out to you and to every other family struggling to help their children. Something has to change.

  5. Shelley:
    I ran across this on my Twitter feed this morning. We haven’t connected for some time, although now and then I find myself wondering how you are.
    Now I know.
    I am heartsick for you and your family; I’m also in awe of your courage for sharing this very difficult journey in your life. I am so very dismayed by the dismissive attitude people have towards the mentally ill, or, today, the unbelievable stigma, the Scarlet Letter that our knee jerk culture is stamping on these unfortunates’ foreheads. By sharing your story, you bring the unsettling reminder to us that your story is one that any of us could be telling. Light and love to you and your family.

    1. Thank you, Anne. Please share if you feel comfortable doing so. We need lots of federal and state policy change to make positive changes happen in mental health care, so I’m hoping if enough people share my blog and others like it, we can begin to have influence with change-makers.

  6. Holy shit, that may be the bravest, saddest thing I’ve ever read. I volunteer with CASA and I know how broken so many of these kids are. I also know that when the awards banquet is over, and the honeymoon you write about is finished, and the politicians move on to another photo op, the only people left to deal with the mess are the bravest of the brave…like you and your husband. I was going to post something on my blog today. Instead I am going to repost yours if that is okay.

  7. Don’t forget what we talked about…you and the husband have to take care of yourselves…stay hydrated, eat healthy and do some kind of exercise (yoga is the best in my opinion). It is critical that you make quality time for yourselves every week. It makes it a little easier and will allow you to stay in it for the long haul. It will be a long haul. XXOO to all of you.

    (Now I have the song “I will Survive” going in my head…thanks for that).

    1. I want to add my encouragement to that of Stephen Kovash. The way through this is to get (and keep) the focus on yourself. Anything you can bring to it will depend on how much healthy self care you are practicing. Then you may be able to help your child, and you and your husband will be available to, and able to help one another through it. Thanks for posting and reaching out. I am sharing this on FB where a friend of mine shared it. Blessings…

  8. Shelley, I know that words are not tangible help, but, when they are uttered in prayer (or screamed sometimes!) it does make a difference. I will be praying for you and your husband and all 3 of your children. And, I will do all I can to spread your story and continue to try to get people concerned and involved in the need to revamp – update – start or change our mental health system. I feel so bad for you that the help you and your daughter need is withheld for lack of money, insurance, and available spaces. I hope it changes soon….Hang in there girl! I do know how hard it can be, and I do know you can make it! Blessings on ya!

  9. Kelli Fram says:

    Shelley — Just know that Jim and I know first-hand how hard this is. We’ve managed to find a simple balance over the last few years — precarious as it is — and to take great joy in the smallest things. I hope for a cure but I wish for understanding and support for your family and others just like ours. You all are doing an amazing job — even on the worst of days. Allow yourself to be fed-up, overwhelmed, and grumpy on occasion. It’s ok. And then get back in there
    — because that’s what we do for the people we love…even when they aren’t so lovable. I’m not going to say it’s going to get easier — but at the end of the day, you know you’ve made a difference in some small way. Kj

  10. Wow. Thank you for being so brave. Our 13 year old has been in residential treatment since mid-october. After our last family therapy the therapist brought up that we might have to parent her without her attaching to us. She has lived with us since she was 4. We adopted her 4 years ago. She has had weekly therapy for 8 years. I am a mental health professional and I feel helpless with her. Is there a online community of parents with children with RAD in Oklahoma?

  11. kathy wright says:

    I was there once. When I gave up and said I can’t do it, it was one of the lowest points in my life. We were still on the foster side so at least that part of it was “easy”. I am sure you have had lots of advice, most of it useless, but, here goes anyway. I found as long as I pretended she didn’t matter, she would strive to stay in that honeymoon area. As sad as it sounds, the more I disregarded her, the better she did. But, I wanted to adopt because I wanted to love and it was clear her definition of love and mine would never be the same. She is 23 now. Married, divorced, and on her bazillionth boyfriend and seems happy in her own way. For her, that is a good life, I just wasn’t able to do the journey with her. I’ll share too because I know what dangerous individual these children can be.

  12. Oh Shelley, I have so been where you are. I have 2 sons w/ ASD and one of them has a violence component rarely seen. I was reading your story and for a moment it was as if I had written it not too many years ago. RAD, ASD, ODD – are heart breaking when the uncontrolable rages become endless.
    Some things I learned are 1) the increased frequentcy can sometimes coincide w/ an increase in puberty hormones. Considering she is 10yrs this is not out of the question. And what this can do is throw off the medications intended to help relieve this violent symptom. 2) and this is the most important thing – You are doing EVERYTHING out of love for your daughter! It may not seem so right now – in the thick of it – but it will get better … she will be able to find the strength to overcome this symptom and manage it because of your strength, your husband’s strength and your love.
    My tears flow as I write this because I know the despair and helpless feeling to see your child in such overwhelming pain. Bless you and your family.

  13. Dottie Rubalcaba says:

    Thank you for sharing. We go through similar experiences with my grandson. He was just admitted for long term care and is only 9 years old. We have dealt with this since he was able to walk. God bless you It’s a rough road.

  14. Shelley, We were close to where you were 2 years ago when my daughter was 10. We got her when she was 4 but at 10 she was completely out of control. Fortunately so far medications seem to be working. 1 year ago she was put on Abilify and she said “you guys really do love me and it feels wonderful”. I can not imagine the pain that goes on in her brain. We feel we have left most of the RAD diagnosis behind us.

    Sending prayers help is found for your daughter and all the other hurting children.

  15. There are no words. I read this Monday night and cried.
    I grew up bouncing in and out of foster care, and I was fortunate. My sisters saw more of the system than I ever did, and I lived most of my early 20s convinced that I would not see my youngest sister survive. Now that they are adults, with children of their own, I find myself afraid that the patterns will be repeated.
    Nothing in the world breaks my heart like these children. Nothing stirs in me the desire to just fix it. To just… to make all the hurt and the brokenness and the fear all go away. I just want to hold them in my arms and love them until they’re better. And I know, not just from my own experience, not just from the lives of my sisters and their children, but from stories like yours, that it’s not that simple, and it just breaks my heart more.
    I know, in the larger scheme of things, my words won’t fix anything, but Shelley, it was people like you who made the difference in me. It was hope and determination and love that helped me see that I could be loved, that I had always been loved, that it was safe to be loved. It was the faithfulness of people like you, of people like your husband (of people like my husband), who made me who I am today. I still carry the scars, but I am no longer a broken promise. I’m strong. I’m thriving. I’m proud to be who I am, and I wouldn’t change who I am for anything.
    Your family is on my heart. You are in my prayers. You are the reason I have faith in humanity. And your story will be shared. Because only by shining a light in the darkness can we banish it.

  16. ,50+ years ago my husband and I were having similar problems …. our son’s diagnosis was “emotionally disturbed” . We didn’t get much help …. the story is long … I am praying for you and your family … and the “system” . “He” is 58 now .

    Ina Lee Abels drpeppergramma@live.com

  17. Stephanie Miller says:

    I know you said you’ve done a lot of research, etc., but are you familiar with Dr. Karyn Purvis from the TCU Institute of Child Development? She is amazing and has dealt with this herself. She is absolutely phenomenal. http://www.child.tcu.edu/default.asp I know there is no one single “fix it”, but I highly encourage you to call and/or research her methods. She always says that she does not believe for an instant that any child is unreachable. I hope and pray the future is brighter for you and your daughter.

  18. […] in the world, no one should be told their children are a lost cause, and there’s no help. I started this blog, because as resourceful and tenacious as I am, I couldn’t find help for my…. That’s not a situation anyone in the United State of America should find themselves. I fly a […]

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