On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Thursday, July 21, 2011

The Dream, The Judgement, The reality

The Dream

The night before Sissy was given a green card for psychiatric evaluation at the local crisis unit, WG and I cowered in fear in my bed, trying our best to sleep. Sissy had already raged for several hours that evening alone. I think The Dad and I tried to tally it up and from last Thursday to Tuesday morning, she spent about 16 hours in primal rage screaming and violent behaviors toward herself.

Monday night, we were so exhausted I didn't even bother to put sheets on the bed. WG and I just snuggled up on the bare mattress under the comforter. The Dad opted to sleep in the recliner in the living room because he didn't trust that Sissy wouldn't be up for playing the and-now-i-set-off-the-alarm-in-the-middle-of-the-night-to-wake-everyone-up-for-kicks game. Eventually, my PRN kicked in and I dosed in a fetal position, my body rigid like a stone. I dreamed of Sissy.

The dream began with the five of us going to a warehouse-type store to shop. WG had insisted on bringing her bike to ride but we were having difficulty finding a place to lock it up on the bike racks because they were all full. Worried that Sissy and AB would begin to meltdown before we even entered the store, I shooed The Dad and the two of them away saying that WG and I would catch up as soon as we locked up her bike.

As they walked off, the new care management coordinator on Sissy's case appeared (we had only met her for the first time that afternoon.) And when I turned back to look at WG and her bike, WG was gone, replaced by Sissy as a toddler - a screaming, tantruming toddler that was running away from me through the maze of bike racks. Concerned for her safety, the therapist and I ran after her to see what all the fuss was and to keep her out of traffic.

Just as we caught up with her and I was about to grab her, the three of us were in a sewer tunnel and Sissy was 11 again defiantly refusing to follow my direction to walk behind me so she wouldn't get hurt. At the end of the tunnel I saw another version of Sissy sitting under a tree sobbing but wearing a devilish grin. While in the tunnel, the defiant Sissy pushed hard against my grasp, refusing to be detained or to follow my direction. I could feel the intensity in her body as I tried to hold her back and I could hear the fear in my voice as I called out to her, "it's not safe, she's not safe, stay back!"

Too late, Sissy ran ahead, escaping my grasp and went straight to the girl under the tree at the end of the tunnel. Then before my eyes, the two became one and the girl sitting under the tree jumped up and cackled at me while she bore holes through me with anger. I whispered to the therapist, we were still in the tunnel, "now you see what I'm talking about." I woke up instantly to discover I was laying on my back, my arms wrapped around my shoulders like I was trying to hug and hold myself. My whole body ached from tension. I knew unequivocally that I had dreamed of three of Sissy's identities. [1]

While I slept, The Dad was having his own event with Sissy. His account of the events can be described as nothing short of Sissy being fully awake but as a male identity. She spoke in a lower, monotone voice, had a rigid body posture and looked at him as though he wasn't there. Then he said she shook all over and was back to "normal" Sissy, confused as to why he was in the room asking her questions. Many times The Dad and I are on the same page, dreaming or experiencing the same things at the same time but while we're apart. It has become what we call, a "bell ringer" for us, as though our subconscious minds are yelling simultaneously, "FORE!"

By Tuesday morning, it was WWIII with her and the mobile crisis team was in my living room doing an intake for psychiatric evaluation. Sissy? She was expressing her disdain for me by growling when she asked if we could please show the ladies (complete strangers, mind you) her box of baby items that I have squirreled away in the garage. When they left, she ran to the window gleefully waving goodbye and making declarations of missing them. I sent her to her room to take a nap while I waited for them to call back with a confirmation from the hospital of an available bed. When I woke her up and told her we were going, she was glad and wanted to know if she could take her comforter and pillow this time, "please, please, pretty please?" she begged as sweetly as she could with doe eyes and clasped hands. "I'll do anything." Then she lowered her eyes angrily and growled, "it's torn!." (I promised to fix it when she returned to green level behaviors.)

The Judgement
Of course, Sissy was regulated by the time we got to the psych floor and I was a disheveled mess. Our differing accounts of events, I'm certain, didn't help matters much but by Wednesday morning the lead psychiatrist on the floor was phoning our IFI supervisor to get the skinny on our family situation. As our IFI super recounted the conversation to me, she said she was taken aback by the air of judgement toward the parents she could audibly hear in the psychiatrist's voice. The therapist said she had never been on this side of the fence before, feeling the condemnation and judgement when she knew unequivocally it was unwarranted. She spent the entire conversation defending The Dad and I, reassuring the psychiatrist that Sissy is "being good" on the floor because she's a text book RAD and that when it comes to parents, we've got it going on in spades - best parents she's seen in 20 years.

By the time I showed up for the family session today, the psych ward therapist and the admitting psychiatrist stood up and shook my hand, saying that my husband and I had gotten a glowing report and that they were so sorry that there is nothing else they can do, that they are just as mystified and befuddled by the level of manipulation and psychiatric care Sissy requires as everyone else. After an hour of my bawling and barely audibly telling our family story, we rose again and I got another firm handshake from both of them, wishing that they could do more for our family.

The Reality
As glad as I am to finally have a professional standing in the corner of the ring with us, I'm still angry and obliterated emotionally that after all this time, my ability to provide an appropriate therapeutic environment for Sissy is still under the microscope. I'm not sure which is harder to bare: Sissy's incessant raging, manipulation and defiance or the incessant judgement from professionals that take ten minutes to evaluate our social history and determine that it is ME that is the reason Sissy isn't excelling in the community because they are using Sissy's pretty-patty-princess act as their defining tool. Honest, God himself wouldn't judge me this hard.

And with that, Sissy will be discharged from the crisis unit tomorrow. She is not showing any behaviors that need clinical treatment and therefore the hospital can not detain her because there is no clinical need to keep her and thus bill medicaid for.

As for PRTF, we are still playing the waiting game.

Oh that the future of my life wouldn't always be determined by someone else's judgement of my family's situation; a judgement they make from a clinician's case summary; a clinician that has spent maybe three hours staffing our case; a case that is 11 years old and getting worse by the minute, not better.

If not for this blog, I would have no voice at all.

[1] as of now, Sissy has not been clinically diagnosed with dissociative identity disorder. She is "being watched" for those types of behaviors along with schizophrenia, schizoid effectiveness disorder and bipolar with psychoses. Her private psychiatrist prefers to defer diagnosis of this level of mental health issue until post puberty, a clinical opinion I wholeheartedly support and applaud.


Ranger said...

I wish there was something I could say that would be any kind of support or comfort to you. I'm so sorry ({})

Butterfly in red said...

Well, at least they considered the possibiity that it could be DID. Do they have specialists to treat that? I heard they are few and far between...

Seven From Heaven said...

I can't imagine how hard this is for you and your family. I'm praying for you.

kisekileia said...

It's bizarre that they can't keep her unless she's showing behaviours on the unit. Surely the fact that she DOES show behaviours whenever she's NOT on the unit should count for something. What would it do if you told Sissy, "You don't get to stay in the hospital unless you act up there," given that she seems to prefer the hospital to home?

Meg said...

It's unfortunate that her mental health providers are so hesitant to do more until puberty hits as she is in such crisis it seems almost negligent that they don't take her home behaviors more seriously. How is raging for hours and hours and hours not self harming? And it's so hard on you all and for her. How are you all supposed to keep living this way?

I really think at some point they will find out that she has extreme psychosis and thought dysfunction and it is kind of a shame they just let it all continue to take over her mind and don't help her despite your constant begging for help. And then they keep giving her these bullsh*t behavior mods thinking it will help. Give me a break.

My son was at the psych hospital for days and they never did realize he was completely psychotic until I told them so. They didn't know him well enough to know what was real, what wasn't, and what was manipulation. And they didn't try to get to know him well. They just dismissed him as being manipulative (which he isn't at all when he is stable). My experience is that psych hospitals blame nearly everything a child does on that child being manipulative (RAD or not) because it takes the responsibility off of them.

She may be able to behave at the hospital becasue she feels safe there and her demons may rest more there but there is a sh*tstorm occurring in her mind and you all are suffering daily as a result. They really expect you to be superhuman.

CherylR said...

I am praying for you. I can't imagine the kind of pain in your heart after all those years. So sorry.

Miz Kizzle said...

Having your parenting skills judged by strangers, particularly those in a position of authority, is a special kind of hell. You are a good mom and you've put up with crap that would have most of us running screaming into traffic with our hair on fire.
I hope today is better for you. Just thinking of Sissy as teenager makes me shudder.