I tried

Ms T from our IFI team called on Tuesday saying she wanted to do a family session on Thursday so everyone could talk about how they were feeling about the trauma of incessant violence and screaming from Sissy. I was excited and told her so. I shared with her my concerns about Aspie Boy and Wonder Girl who are both really stressed, Wonder Girl now requiring some therapy of her own with her nightmares and anger. Ms T was on board, we scheduled the session and ended the call.

So yesterday was Thursday. Ms T walked in the door yesterday and told Sissy they would be doing their session on the front porch swing. I said, "I thought we were doing a family session today."

"Oh. right. I forgot." So Ms T went to her car to get a game for us to do. She returned and began setting up the game while asking me about how things were going.

So I tried. I tried to tell her that we are all stressed out beyond capacity, that Wonder Girl is having dreams that Sissy moves to another home so we can all be safe. (WG's words, not mine) Ms T witnessed Aspie Boy completely melt down, something he is doing a lot lately, something that is unusual for him, something I attribute to the stress and violence at home. I told Ms T that I can't sleep, that I feel the panic rising up again, that The Dad is just as stressed and ...

Ms T dismissed the children to another room so they didn't have to hear what I was saying.

HOW is that a family session?

furthermore, after another hour of me crying and trying desperately to get Ms T to flippin' listen to me, I was done. She didn't hear anything I had to say. She wasn't listening. She dismissed all of my complaints or explained them all away. She wouldn't acknowledge WG or AB's mounting issues because of Sissy's unpredictable ways, she discounted everything. I didn't get mad at her because it dawned on me this woman doesn't get it Particularly after Ms T said, "tell me again what happened Friday? Because I'm confused." And she was the person I called to deescalate the crisis!!!!!!!!!!!!!!!!!!!!

I tried. I'm tired of trying. I just want to be happy in the here and now. I want to not always be waiting for the other shoe to drop, or in Sissy's case, to be chucked at my head. I want to just let it all go, just float and whatever crap Sissy does, she does. But I don't want to readjust Sissy's therapy plan every time she gives us crap. I don't have the energy for it anymore. And truthfully, it doesn't make a difference. I'm spending my energy at the sacrifice to time and well being with AB, WG and The Dad to help alter the behavior of a child that doesn't see the need to alter her behavior.

And I've tried explaining that to Ms T but she's not getting it.

So we're going over her head. The Dad wants the supervisor's number.

My dream last night: I was kidnapped and help prisoner so a strange science cult could subject me to various hostile and violent situations to observe how I would respond. Hmmm... sounds like my real life. The IFI team must be the strange science cult.

PDOC appointment

A little more hippa protected disclosure in the event that it benefits other families:

-upping the resperidone by 1/2 mg
-keeping the imipramine as is
-keeping the lamictal as is
-adding tenex 1/2 mg 2 x day
-pick up OTC benadryl tongue strips for violent outbursts
-pick up Miralax to help the constipation

his thoughts on the following:
-Vistaril over Ativan but try benadryl first
-colace is the best OTC stool softener but if it offers no relief from the med induced constipation, switch to miralax
-on adding lithium to the resperidone, he only likes to do that when knows the resperidone by itself isn't helping. too many chances for side effects from drug mixing

He asked Sissy the three famous questions: "do you want to hurt yourself? Do you want to hurt others? are you hearing things or seeing things that aren't there?"[1]

He waited for Sissy's answers. She said "no" to all of them, of course. Then asked me. I said, "well, we're almost back to suicidal, and when she plays by herself, she says 'we' a lot and then there's the unpredictable violence ..."

So then the pdoc says to Sissy, "is there anything you're afraid of?"

And Sissy replied, "Yes! That'll I'll have to go back to the hospital!" (we've used that term with Sissy to explain the purpose of the RTC - a hospital for her mind and emotions)

And I love our pdoc. He said to her, "Well, we don't want you to go back either. But no one can do anything about that except you. You need to stop being so violent at home and scaring your family."

she grumbled, crossed her arms and harrumphed. as usual. Hey, at least a professional is witnessing these responses! lol

he asked about school. He is discouraged and concerned that she's not in an EBD placement. To which I said, "oh really..." because we might have some progress in that area.

Apparently, after last weekend's issues with Sissy and the constant crisis calls to the IFI team, the supervisory staff recommended that the team determine if school is causing the issues. So Ms M went to school to observe. She returned with some interesting findings and some concerns. She wants Sissy in EBD.

I said, "well, I'm just so glad you said that!" lol

The gears are turning but there is no guarantee that they'll make a complete revolution or that they'll create an impetus significant enough to get the school to agree. But you know I rushed home from the pdoc appointment to email the IFI team straight away letting them know what the doc suggests for school placement. EBD placement might be just within our grasp. And all it took was for Sissy to be violent in the home for the last seven weeks creating havoc and mayhem for the rest of us. May wonders never cease.

if nothing else, I've not lost my sense of humor. Too bad my quick wit about life with a RADish is useless on the comedy circuit. No one except RAD moms would get the jokes! Imagine THAT crowd in a comedy house - a bunch of bedraggled, half-asleep, weary women looking 10 years older than they are, some twitching, some with nervous ticks, others talking at warp speed because it was the first time they could talk about something that didn't include the RADish therapy plan and everyone drinking WAY too much because it dulls the pain ...

[1] i occassionally ask Sissy these questions at home as does her IFI team. And when I'm feeling rather punchy and/or The Dad and I are a bit miffed either by life or with each other, I like to toss out these questions to "lighten it up" some. Just for fun. Because, you know, it makes it a little less aggravating to be stuck behind a dumb driver when you realize you're not suicidal, homicidal or schizophrenic. Keepin' it real, sort of thing.

ah, the beauty of the natural consequence

Well, I've not been mysterious about it. Sissy has been ... difficult lately. *snickering* But without her notice, I did have a few moments to revel in the natural consequences she has had to face as a result. It's so freeing when life teaches the lesson to her. It takes so much burden off me! And truth be told, it speaks much louder than I can, even when I shout.

Scenario Number One:
I mentioned in an earlier post that Sissy is no longer consequenced for her lying behaviors. It's on her behavior chart to assess her weekly level status. If she lies, she doesn't get the point. no sweat off my back. But the one that really sinks its teeth in is when Sissy realizes she's lost more of our trust.

The IFI team has tried hard to teach Sissy the value of trust and honesty. Sissy continues to have a block on this rather abstract concept. But I think this morning she got a little nip in the brain.

Her book and dolly had been taken for some reason or another. The Dad had overseen that particular confiscation so I did not know the terms. This morning Sissy approached me. "Mom, can I have back my book and my doll?"

"Well, I remember your dad saying the book could be returned on Monday morning because it is a school book that you need today. But as for the doll..."

Sissy interrupted me, "He did! Honest! Dad said I could have it back today!!!! I'm NOT LYING!"

I just looked her square in the eye and with a sweet apologetic tone said, "I'm really sorry Sissy. I can't take your word for it. I can't trust you, even if you're telling the truth. That's what happens when you lie."

"BUT BUT BUT!!!!" and then her tantrum stopped, immediately. She looked at me grumpily because she realized it was true, what I had said. A little nip on her brain about trust and honesty was occurring. I didn't say anymore about it, I let the sting of the bite speak for itself.

Finally she sighed, "but when can I have her back?"

"You'll have to ask your dad. He confiscated it. It's between you and him."

Scenario Number Two:
Sissy got up from the dinner table to clear her place. She limped to the kitchen sink. OK, my RAD radar was turned up and my initial thought was mmm hmmm. she's grasping for attention. why? but I squelched the thought and opted for "safe".

"Sissy. Why are you limping?"

"Huh?"

"you're limping," I repeated, trying not to make my exasperated tone obvious. "why?"

"I don't know!!!"

Again, I thought, Right. because you're faking. but WHY are you faking, what are you trying to get? Instead, I said, "What's hurting?"

"MY FOOT!"

"are you cut?"

"NO!"

getting tired of her shouting but trying to do some slow deep breathing so I didn't go crazy on her, "is it the shoes you're wearing?"

"NO! I WEAR THEM ALL THE TIME AND IT NEVER HURTS!!!!"

"OK. When did it start hurting?"

"HUH?"

really, getting annoyed but pinching myself so I didn't lose my cool, "WHEN did you notice the pain?"

"Oh. a few days ago."

doing some quick calculations, a "few days ago" would have possibly been Friday when she was violent. "Friday?"

"I don't know!"

"Because Friday you had your fit. Were you kicking things?"

*growling and grunting at me*

"So that would be 'yes mom, i was kicking in my fit'?"

*nodding of her head*

"So... you've injured yourself when you had your fit?"

*more nodding*

"I'm sorry that happened. I'm also sorry you had your fit. You must be disappointed in yourself for making that choice."

kind of weepy, "YES! I don't want to be injured!" more anxiety bubbling up, she really gets so weirded out about her body issues.

"you'll be fine. It might take a day or two to heal."

"A DAY OR TWO!?!?"

"yup."

"Do i need ice?!?!"

"too late for that. you would have needed it on Friday though. I'm sorry I didn't know you were hurt then so I could help you."

*grunting with arms crossed*

I thought I'd offer one more inch of insight, "maybe you'll know for next time to be safe in your anger so you don't hurt yourself again."

*more grunting*
----------------------------------------------------------------------
Ain't life a b!tch? lol
I'm so glad life is teaching Sissy too. It takes so much burden off my shoulders.

the physical toll

Yesterday I was speaking with another mom and she asked me about the physical toll on my body being a parent to kids with needs. Then waldenbunch mentioned the same thing in a comment to my rethink, regroup rehash = reset post. And another commenter discussed the need to help our kids understand their own physical pain.

So I'm opening the floor for discussion.
First question:
How do you help your challenged kids identify their physical pain?

I try to talk to my kids using social stories type language, making it real simple. We also use a 10 point pain scale. But this pictorial is really nice (my thanks to Ashley, commenter)
Here is a useful pictorial for assistance.

email direct for the linkeroo or scroll through the comments of the above-linked post

Second Question
How has raising challenged kids affected your physical health?

I've mentioned in the past the fact that we gain on average, 15 pounds a year raising RADishes. That's a Katherine Leslie fact, fyi.

Here's some of the things I've experienced:
those with asteriscs are issues some of the rest of my family have problems with too
I feel like I've aged 10 years in one year*
I've gained weight
I've gotten a lot of gray hair, just in the past six months*
I've lost a lot of hair*
My heart flutters
I have chronic back, neck and shoulder pain*
I have numbness and tingling in my hands and fingers because of the stress in my back and neck
I have irritable bowels*
I have had panic attacks
I have restless sleep often riddled with odd dreams and/or nightmares*
I have ringing ears*
I have lost fillings in my teeth from grinding in my sleep*

rethink, rehash, regroup = reset

I must have an automatic reset button, like my hairdryer. When the hairdryer shuts off, I mash the reset button on the plug adapter and voila! Hair blowing resumes. I think I'm like my hairdryer. I get too hot and I automatically shut off. Someone or something has to mash my reset.

Lots of helpful feedback to my last two posts. Really, you gals are amazing women, do ya'll know that? Well, you should. You should walk up to a mirror and look yourselves square in the eye and say out loud with confidence, "I'm an amazing woman!"

Ordinarily, I wouldn't be so forthcoming with what would typically be considered Hippa protected information, but I have a sneaking feeling that what I post here is helping lots of other families and if that means you need a quick looksee into our med plan for Sissy, then so be it. My new mantra lately has been "why struggle with these battles if I can't help others?"

Our Pdoc appointment is on Wednesday (I'd previously thought it was Thursday and my day planner corrected me. Thank you day planner) We will be having a serious chat about some things. And now, for your Hippa protected full disclosure:

Currently, Sissy is on resperidol, immipramine and lamictal.
1. she's still having ADHD symptoms plus sleep walking and sleep talking with lots of nighttime wakefulness. We need to up the immipramine or switch to a different anti-depressant.

2. Sissy is delusional, irrational, and violent. She is volatile and unsafe in her anger. We are all nervous for hers and our safety. Daily. We need to up the resperidol immediately and/or swap some of that for lithium.

3. We need to have a serious discussion about adding an emergency prescription of Ativan for those occasions when all other interventions are useless to deescalate her.

4. at tudusamom's suggestion, we need to add Vistaril, a prescription anti-histamine, to the med cocktail

The biggest issue for me is to remember the frog-in-the-boiling-pot issue. I am perpetually convincing myself that I can "manage" it, that things aren't "that bad", that it's fine, it's no big deal, we've got it. Except when we don't. And at some point, if I can't get a handle on calling a spade a spade and being brutally honest with the fact that Sissy is unsafe, unwell, and needs serious interventions, I will eventually come face to face with a crisis that will super-cede my abilities. A crisis that could be physically endangering.

It's hard to do! When you've lived this insanity for so long, it's very easy to dismiss those circumstances that would make neurotypical families jump back and cry "Uncle!" Not to mention the fact that when you're trying to raise a non neurotypical family, your domain and range for "normal" is radically skewed. Our perceptions are permanently altered. What? Shopping after 10 pm isn't "normal" for families? Huh? That's the only time I've ever been able to grocery shop because I can.not.take.my.children.to.the.store.ever. What? You say that's "unusual?" How is that unusual when it's what I've done for nine years? What? You stay that it's "alarming" when I tell you I have to set an alarm every night so I can sleep without fear? Huh? Putting an alarm in the house was a GODSEND! How can that be a bad thing?

right?
RIGHT!
I know some of you are reading this and nodding your head and saying yep. that's us. but how does she know? Because I'm living it too, sistahs, I'm sitting in this boiling pot of water with you, unaware that I'm about to become frog leg stew. And this skewed norm is what I have to communicate to the pdoc. I have to put to words the very real and shocking truth that I live with a level of anxiety every day because I can't predict Sissy. Which means my kids do too, as does my spouse. We are all stressed out. We are not coping. Sissy is over the top. The therapists are at a loss. We are constantly in fear for her and our safety. We are suffering PTSD. We are coming apart at the seams. We can't deal with the 24/7 therapeutic demands Sissy puts upon us because of her overwhelming needs. I don't even think it's the RADs so much as a "rad component" to her mental health needs, a component that exacerbates her other mental health issues. (Thank you again to tudusamom for that phrasing - takes some pressure off when I observe that the typical RAD therapy is insufficient by itself to address Sissy's needs)

I think I might just print out this blog post and read it verbatim to the pdoc.

Last night we made a spur of the moment decision to play soundscapes music all night for Sissy while she slept. Before RTC, she listened to classical music every night since we got custody. But now that she's in the living room and her space is limited, she has no music player. I remembered though that we could put on a music channel from our cable TV, turn off the TV but leave the DVR box on, piping music through the stereo. Excellent. it was soothing and Sissy reported sleeping through the night. If you don't have access to music channels on your TV, you can get one of those white noise machines that play various canned soundscapes.

Then, after supper this evening I had the cognitive moment to say to Sissy, "do you know what a headache is?" Because it occurred to me that some of the reasons she might go straight from feeling fine to blind rage might be sensory-driven issues, like pain. So I explained to her the different types of headaches she might get, what they feel like and how she would know if it was a headache. I told her it simply required some tylenol and that she'd know it was working because she'd feel better right away. I gave her Aspie Boy's example. See, when Aspie Boy has a headache, he tells me it feels like his brain is coming out of his skull or he asks me if his blood is coming out of his forehead. When I give him tylenol, he always says, "wow mom. what is IN that stuff?! It works so good! Anyway, it might have been a wasted five minute talk because she was getting anxious[1] and losing focus, but I figured it was worth discussing. If she was an NT 10 year old, she'd be able to tell me things like "mom. my head is hurting so bad"

And yes, Aspie Boy uses very strong language when he describes things and ordinarily, that would set Sissy off except when it's Aspie Boy, it doesn't. They have a shared brain. OK, not really, but some days it's like they have one mind between them. I need to use time with him or his anxieties and fears about Sissy's issues as a living example for Sissy of how her behaviors are impacting her family. If she understood how Aspie Boy was feeling about it, she would be very likely to listen up. (can't claim that little nugget either. Still tudusamom's wisdom! Ya'll need to friend her, btw. she's awesomeness incarnate)

Thank you all, again and again. Without this support network, I would surely have crumpled into a heap by now. xxoo to all of you and here's some happy hippo power to help you muddle through your week's pending dooms!



-[1]do any of your RADishes get overly anxious about any body-related thing that is seemingly benign? Sissy gets really keyed up about body issues. to the point of wretching, crying and getting very physically wiggly and fidgety.

How to Triangulate

Here is the most recent example Sissy presented us with of how she might try to triangulate her parents (doesn't ever work. The Dad and I talk to each other. Imagine that.)

House Rules
sissy is well aware of this rule and tries very, very hard to pretend that she's forgotten it or to make us all miserable because she just flat out doesn't like it
On non-school days in which there is no early doctor's appointments to attend, the children are to stay in bed until 8:00 a.m. Should they wake early, they must try to go back to sleep. If they can not sleep, they are to lay quietly until 8:00.

Rationale for the rule
The Dad and I got tired of waking up at 6 am to little chirpy voices demanding stuff from us. Besides, our challenged kids need more sleep than the average bear. And if it can't be sleep, then it should at least be rest. For EVERY household member, moms and dads especially.

What about reading?
Staying up late to read is an earned privilege. Reading in the morning is fine too, but not before 8:00. Again, we want to stress the NEED FOR REST/SLEEP.

Sissy strikes again
the house is only 1200 square feet. If one of us farts in the bathroom, we all hear it, no matter what room we're in. So there's no keeping secrets. Sissy apparently hasn't caught on yet

I was in Aspie Boy's room which is directly across the narrow hall from my bedroom. Sissy was talking to The Dad about having the privilege to read in the morning.

"Dad? Can I read when I wake up?"

The clever Dad says, "How will you read in the dark?"

Sissy quipped, "I'll turn on the light."

Astute Dad said, "Not before 8, right?" Sissy hedged. "What's the rule?" he asked, not because he didn't know but because he wanted Sissy to say it. She whined. "I don't remember." I couldn't hear it but I'm sure he made the yeah right and I'm a purple alien from outer space face. So The Dad sent her to me for reinforcement of the rule.

(Remember, I've heard this entire exchange between Sissy and The Dad.)

Sissy takes the three steps from my bedroom into Aspie Boy's room."Mom?" she started. "uh, um ... Dad told me to ask you if it's alright with you if I can uh, read if I uh, if I um, if I wakeupafter8andyouhaven'tgottenupyet."

I just stared at her.

"seriously! That's what he told me to ask!"

The Dad called across the hallway, "Wrong. That is NOT what I sent you to ask your mother."

*screaming*

I just sighed. "Sissy. Why do you do it?"

More screaming perforated by gasps of barely coherent phrases of "I didn't know! I didn't lie! Honest! It's what I meant to say! Really! Seriously!"

Caught in her manipulation, she back pedaled harder and faster than a triathlete with more vehemence than an abominable snowman. "It didn't know what I was saying! I don't remember the rule! Honest! I didn't know what Dad meant! I didn't mean to lie! It's not my fault!" etc. etc. etc.

We didn't fall prey. She does this every time she lies. She fights tooth and nail to the death with her lies. She is unwilling to concede that she tried, one more time, to play us for fools. The kicker? We don't punish her for lying. What's the point? She'd be punished for a lifetime if we did. Nope. We let the absence of our trust speak for itself. It's punishment enough. So why keep lying? Why keep trying to manipulate? When she's regulated, she immediately admits what she did and said. Cognitively knows and understands exactly why and what and who and where. But she will go into a blind fury the instant she's confronted with the truth.

One day, her manipulations and lies will be over something much bigger than a ridiculous house rule about when to wake and when to read. One day, her lies and manipulations will cost her the trust of powers much higher than parents. One day, she'll be faced with a consequence that matches her offense.

I don't know how to help her see this image of her future in my magic crystal ball. I feel powerless to change the course of events that I know will inevitably play out in Sissy's life. I'm also increasingly concerned for her physical welfare when she goes into these blind rages. Several times in the last few weeks I've been alarmed that she will hurt herself enough to require medical attention, specifically, for a broken bone or for stitches. She is not particular about what she pounds her fists on or how hard. And all for a ridiculous book to read before she's supposed to be awake.

And seriously, if she was any other kid, I'd make a concession if it was that important to her. But it's NOT. That's the kick in the pants. It's just something she was using to try to bait us. In all probability, she'll sleep way past 8. But if we gave in just a smidge and said, "sure, for this one time, we'll let you break the rule." She'd wake up at 4 am and read until 8 and claim that she was "allowed to" because "we said she could." Or she'd try to do it some other night, waking up in the middle of the night to read and saying she was allowed to because we didn't specifically say the words, "only on April 25th, 2010."

She's done it before so I'm not making it up or making a bigger deal out of it than necessary. Literally. She's been up at 4 am with the light on, screaming at me that i told her she could read whenever she wakes up. And my child thinks that means she can wake up at 4 am to read. Therefore it means The Dad and I have to be extremely specific about how and when she can break a rule. So it's just easier to say "no. we're not breaking any rules. not even so you can read a book"

It just wears me out. It tries my patience. I'm exasperated, exhausted, pulverized by her crap. I can't out wit, out last, or out play her 24/7 ad infinitum. I just can't.

Long Exasperated Sigh

CBAY waiver meeting on Wednesday was productive. They will take our treatment plan to their supervisors and negotiate our "christmas wish list" of the wrap around services we've requested. I felt buoyed after the meeting, like there might actually be hope. My ego received more boosting as the CBAY reps were quite pleased with my knowledge, my ability to put into action phrases the things Sissy needs and mine and The Dad's enthusiasm to work as a team toward Sissy's ultimate success. Even Ms T from the IFI team was there, supporting and helping.

CBAY said that since they are a federal waiver, they can tap medicaid money, that essentially, since Sissy is their client, when CBAY requests services for her, the services are billed to the state. In other words, if CBAY and IFI feel that Sissy needs a revisit to RTC or a group home, they might be able to make that happen. The CBAY team was aghast that Sissy was sent home after only 100 days. Most of their clients, apparently, have spent as much as two YEARS at the RTC Sissy was at.

But by Friday night The Dad was exasperated and I was in tears again. Had to call Ms T to deescalate, more rage, more primal screaming, more of everything. Whenever the team comes to the home, it makes Sissy worse and Ms M had come for her usual Friday night therapy session but had to leave early on an crisis call with another client. You can imagine the crap Sissy pulled as a result.

When i called Ms T two hours later, I apologized for being emotional and interrupting her dinner out. I attempted to explain the scenario leading up to Sissy's rage but it didn't matter. Ms T and I came to the same conclusion, the situations that escalate Sissy are different every time, we can't plan for every scenario. She's off the charts uncontrollable. Ms T is puzzled by her anger, says she's given Sissy every tool she knows to thwart the rage. Says that when she works with Sissy, the child is able to parrot back what she's been taught, making Ms T think she is comprehending what she's learned. Ms T admits that maybe she hasn't learned it at all and that it's definitely time to revisit the rage in the family sessions.

Ms M called at 8:30 this morning making sure we didn't need her to finish Friday's therapy session since she had to leave early. I told her about the crisis call we had to make. Ms M pretty much said what Ms T said. It is unexplainable. Sissy is unpredictable, demonstrates that she understand what they teach her but refuses to use those skills when applicable, etc. Ms M admitted that she has exhausted her repertoire of skills to help Sissy and will consult with her supervisors for more suggestions.

I'm tired of her primal screaming. I'm tired of her punching herself, the wall, the bed, the glass doors. I'm tired of her hurling stuff. I'm tired of having to pull myself together so I can make sure Aspie Boy and Wonder Girl are OK. I'm tired of living in crisis with Sissy. I'm tired of living on egg shells. I can't take it anymore. She's been home 7 weeks today and with the exception of saying she wants to die, she has returned to every single one of her old issues. The kicker is this time, she's doing it despite the enormous wealth of resources we've tapped into.

We see the psychiatrist on Thursday, the first visit with him since last November when he filed the request that she be placed in RTC. I'm not going to have exciting news for him. Short of making a minor med adjustment as recommended by a few med savvy moms, there isn't anything he's going to be able to do for us.

When all the doctors and therapists have used up their skill set to help a child and they admit that they're not sure what's going on, what on earth are the PARENTS supposed to do?!?

I can't think about it anymore. It all feels so hopeless. Sissy simply won't change.

The first time

When was the first time your RADish injured you? How long after you had custody of your RADish did it occur? What was your response?

I mentioned it in my therapy a few weeks back. The first time Sissy hurt me. We'd had custody of her for three weeks and it was Christmas time. We attended the biological family Christmas party as the newly inaugurated members of their family. It was a week before Sissy's first birthday and two weeks before Aspie Boy was born. Birthmom was there of course, it was her family's annual party. Everyone was excited to see Sissy after three weeks of being in our care, three weeks since she'd seen her mother. I could see from Sissy's face that she was not OK but I didn't know how to say to her family, "stop! you're scaring her. It's freaking her out!" Especially being held by her mother. Sissy was pretty mad about that. I think if I could put a name to the expression on her face when she looked at me, it was betrayal.

After the party, we took her home and I tried to soothe her to sleep, cuddling her while we laid on the bed. She resisted with kicking, screaming, slapping. Eventually she fell asleep next to me on the bed, but she was not touching me. When she awoke, seeing my smiling face right next to hers, she made a fist and punched me on the nose. Then she screamed and kicked and slapped some more.

I didn't know what to do. I certainly knew nothing of RADs at that time. And she was just a little baby. I wondered to myself, did she really PUNCH me or is that my imagination running wild because it caught me off guard? I tried to hold her closer to calm her down but that made her escalate. So I let her go. She squirmed off the bed fast as lightning and toddled away from me and to her toys. I thought she just wanted to play and I was obstructing her from play. But in my heart, I knew it was something more.

Two weeks later, when Aspie Boy was born, their mother asked us to please bring Sissy to the hospital when we came to see Aspie Boy. It was also HER birthday. (lousy, delivering an unwanted child on your birthday, huh?) There were balloons in the room celebrating both events and when we walked in the room, that was the first thing Sissy noticed. Until she saw her mother in the hospital bed. She froze. Didn't move. Birthmom asked to hold her and someone, not me, picked her up and put her on the bed with her mother. She was a stiff board. An ANGRY stiff board. I have a picture to prove it. She resisted her mother's hugs and caresses and then in her efforts to squirm away, squished her tummy, which was still sore just 12 hours post delivery. Birthmom yelped out in pain and I ran to rescue them both, grabbing Sissy quickly from her lap.

When I sat down on the chair in the room, Sissy took her fist, grabbed my bottom lip and pulled as hard as she could. I was so stunned i nearly dropped her, which is what she wanted anyway. I put her down and she toddled away happily toward the balloons and I ran to the bathroom. My lip was torn and bloody. It was already swelling. It stayed swollen for several days. Again I thought did a one year old really just do that? Hurt me on purpose? but I dismissed it because how could that even be possible? And yet, Sissy's anger ceased immediately after she'd injured me, both times. Of course, in both cases, I let her go from my embrace.

I dismissed both events because they included birthmom and I couldn't logically separate Sissy's anger about her first mom from any potential anxiety she bore for me. But then the night terrors started. 6-8 a night for four straight months. We took her to a psychologist who diagnosed her with RAD at 18 months old. I was told to "love her more and hold her like an infant." We were counseled to eliminate visits with her mother to help ease attachment to me. But Sissy's rage continued toward me even in the absence of her birthmother. In that first year I was spontaneously peed on, pooped on, and vomited on. I was slapped, kicked and punched.

The worst was when she bit me on my cheek when I was trying to tickle her. She opened her mouth as big and chomped hard and long. I had to push her off to release the bite. I was bruised for days. That was the moment I knew it was more than just toddler angst. That was when I understood that this was going to require more than holding her and loving her more. That was the moment I knew that Sissy might possibly be scarred forever, and that my life as her mother, was going to be much more than I bargained for.

She was 2.

Calling Dumbledore

We continued yesterday's on-the-fly therapy approach this morning. We were going over Sissy's behavior chart[1]. Turns out, Sissy's biggest "red level" events revolve around PH. Most specifically, toothbrushing. We have officially appointed Toothpaste as one of the objects Lord Voldemort has put a part of his soul into which Sissy thought was funny. SCORE! Who thought I'd hit on something with Harry Potter specific DBT skills?

After we had our fun about it, I zeroed in. "Sissy. If you live to be 87 and you brush your teeth twice a day, that's a lot of toothbrushing you have to do in one lifetime. You need to get over it." She glared at me. "Yes. I said that. GET.OVER.IT. You need to make that choice."

Picking up the kids from school wasn't fun. Wonder Girl's parapro told me that she had extra homework for not doing her school work (chose bad classroom behaviors instead). Then Aspie Boy showed his butt in the front office area and the monitor/speech therapist was not pleased with his behaviors. I felt like such a dork of a mom, having my son's behaviors corrected while I stood there, helplessly. Sometimes, when the school staff do that I get anxious that they think I'm a bad parent. I know that's not the case. I tell myself that. my kids are challenged so my parenting skills are challenged every day and it's nice to have another adult advocate for me once and awhile. But on the outset, it still feels like I'm inadvertently being corrected too.

When Sissy returned home, from RTC, we opted to suspend formal RAD therapy for a few reasons.
#1 - We have IFI therapists and we don't want too many different therapy approaches to learn and apply
#2 - CBAY waiver begins this week with wrap around services which will max out my time allotments for Sissy's non-school related assistance
#3 - switching to Federal Medicaid means our RAD therapist will no longer accept our insurance (but of course, on Friday we learned it will be December before we hear if Sissy's even approved ... ) which means we'll have to use one of the therapists at the psychiatrist's office [2]

But I was disappointed because when Sissy went to RTC, her RAD therapist and I discussed starting a support group, something that never got off the ground.

Today, the RAD therapist called me, not ten minutes after I walked through the door. She was asking ME for advice for another patient. Wonder of wonders, I knew more than her about the services available locally. AND she wants me to go ahead and start the support group, verbally appointing me as chairperson if I am still willing.

*jaw dropping*

wow

when did I get to this point in my abilities as Sissy's parent to be helping others, let alone professionals? After today, this call from the RAD therapist was a nice boost to my morale on the heels of feeling like a hopeless schmuck. Who knows, maybe tomorrow I'll wow the CBAY team and IFI therapist with my savvy Harry Potter DBT plan. Wouldn't THAT be a wonder? Maybe I'm Dumbledore after all?


[1]BTW, if you want a copy of it, just email direct and I'll email the docx file.
[2]the RAD therapist has a master's and not a PhD. Medicaid requires a PhD supervisor at least. We'll have to switch to the psychiatrist's therapy partner.

cluing in

after another rousing, ear-busting introduction to my Monday morning, my compliments to Sissy, I have come to a conclusion.

See, after she does all of this crap, I try, as per the recommendations of the therapists, to have a regulated conversation with her about how she can navigate these pitfalls better. (and when I say "pitfalls" I of course, mean the very troubling, often horrible and despicable practices of changing her underwear, brushing her hair and her teeth. I know. i'm a horrible, horrible parent. I can give you the number to my local social services office if you need...)

ANYWAY (i dont' have much time today but I needed to get this thought on the page)

I was therapeutically parenting, or at least hoping to. Sissy said she hated her self, and I waited, hairbrush poised over my head to listen if she'd say the next big phrase, i want to die because I'm waiting for that ball to drop. You know? I know it's coming. Told her therapist last week it's only a matter of time. but she didn't say it this morning. *phew*

So I seized the chance to talk her out of her tree. We came up with three-sentence coping skill phrases she can say to herself when she starts to escalate, an attempt to retrain her brain and to redirect herself back toward positive thinking, etc. etc.

It wasn't going very far so I told her, "we are not your enemies!" which made Aspie Boy laugh and giggle. Then *pow* it just came to me. I turned the paper I was writing on, over and wrote this:
Dad is Hagrid (Dad is VERY tall so this made her giggle. seriously. he's a giant)
Mom is Dumbledore (because for the RAD, mom has to have all the wisdom and power)
Aspie Boy is Ron
Wonder Girl is Hermoine
Sissy is Harry Potter
The Smiths are Griffyndor.

All of these characters get mad at each other some time or another but they always resolve it and remember that they are working together toward one cause, destroying Lord Voldemort.

Then I flipped over the paper and reviewed the coping skill phrases we worked out:
#1: Anger is Ok
I need to be SAFE in my anger
I will use a coping skill [1]

#2: This[2] is what I need.
My family wants to help me
I can stop screaming

and after all that, we were nearly late for school. But I sent Sissy off to school imagining she was Harry Potter (I know, feeding that RAD psyche, maybe not a good thing but hell, sometimes a girl has to get through one morning a week without crisis, you know?)

Then I returned to the house and stopped cold at the sink.

I
am
not
a
trained
therapist
but
I
have
to
be
a
therapist
to
help
my
child

and that's the cruxt of it. Even if I was a trained therapist, getting a 'real time" internship, living on the job, it still would be too big a task. Therapists don't spend 24/7 with their clients. They get one hour and then they write crap down, regroup, breathe, use some of their own coping skills, refer to their colleagues, etc. etc. RAD moms?

yeah.
you see how that works out.
we dont' even get a pay check.
and honestly? This little chat session was good, on the fly, might be useful for half a second. It's all I've got and to be really real without bragging, it's a heck of a lot more than what the trained therapists have. hands down.

it's too much.
I'm just cluing in.

[1] we have a list of DBT coping skills Sissy learned at RTC and with IFI posted on her wall

[2]because this RAD language (as per Nancy thomas) applies almost every time Sissy has a meltdown. It is 99% of the time over something that she needs that she rebuffs us for because she doesnt' want to be told what she needs

string theory

some of you have emailed directly asking if we're doing alright. Thanks so much for that love! It's been a really hard week that started out well and tanked with a giant capital 'T!' rather quickly. Point of fact, this is the first time I've had the chance to even LOOK at my computer and email in at least 48 hours, if not longer.

and no, I don't want to rehash the specifics. Somethings in our lives aren't worth remembering or recording in the blogosphere. I'd be quite happy if this past week was vaporized from my memory forever.

as I told my therapist, it would be amazing if I could get 5 straight days without chaos, crisis or other cataclysmic event happening. She is increasingly anxious that I do not have more local support and I continue to remind her that at the rate of chaos in my life, good Samaritin people will quickly be burned out. It's that bad. Plus, there is the obvious side effect of ruining budding friendships because my life is always chaotic. RRIIIINNNNNNNGGGGGGGGGGG. "Who's calling? Integrity again? Don't answer it. She's got some other crisis going on and I just can't deal with that right now.

yeah. because that could easily be a very real scenario. That and this scenario: one friend speaking to another, "You know, I know Integrity says she isn't mentally ill but the rate at which he life goes to the crapper, it makes you wonder if she's not making bad life choices or is a little "off" and that's what keeps causing these things. No one's life is this horrible every single day without explanation"

"yeah, it's out of control. Maybe she needs to learn some parenting and life skills?"

because seriously. If my counselor is grasping at straws and saying "I feel inadequate to offer any help that is meaningful" then it has to be true. My life is out of control. But the problem is, no matter how many times you explain to the average person how challenging, how hard, how insane, how out-of-control life is raising two challenged kids, they don't really understand it. And they can't. It's impossible even for me and my counselor to figure out just how to stop this freight train I call "my life" I might as well tell people, "woei ewojr mfuos so souel dolihpw" becasue it translates to roughly the same thing in their brains. huh? I hear Integrity saying something and I don't really get it but I want her to know I care so I'm just going to nod my head in agreement and say, "Wow. that must be hard for you. I'll remember you in my prayers." what else are people going to say or do?

I've tried begging God. Literally, begging that He would be merciful and kind and make the nonsense stop. I've tried pleading with Him for super natural wisdom that will steer us to a path for our life that is less insane, maybe even more fruitful. I get bupkis. I hate getting bupkis from God. Really.Hate.That. How much more of myself can I expend trying to get God to listen and help?

and the highlight of the week (said tongue-in-cheek) after a culmination of 7 hours of my life applying for SSDI for Aspie Boy and Sissy, I learn that our state is so backlogged we won't hear anything until December at the earliest. Apparently our "great governor" (whom I did NOT vote for, fyi) has furloughed the state's M.D.'s and is outsourcing the backlog of SSD paperwork to Oklahoma City and Minnesota to process it. Right. Because that costs the state less than paying for M.D.'s? Whatever. That's a fish I can't fry today. Or like, ever.

Here's what I wrote to my IRL friend in an email:
I want to curl up and sleep for a very long, long time and then wake up and discover that my whole life has actually just been a nightmare and that the truth is I live very comfortably with three children that are Mensa kids and I have a PhD in bioengineering and The Dad has franchised the business and now it's a multimillion dollar/year business that he earns money on instead of working like an indentured servant every day...

hey. I can dream, can't I? String theory. In an alternate universe that occurs in another dimension right here in our midst, that is the life I'm living. When I figure out how to transport myself to that other dimension and that other parallel universe, I'll let you know!

HOORAY!

did you miss the Ode to Sissy?
you have to scroll down one more post to read it.
It's funny. You'll like it.

OK, now for my news!
*drum roll*

After five long years, we have confirmed
Aspie Boy's genetic abnormality!

*flying confetti, blowing noise makers, floating balloons, shouts of glee*

Wait, wait! There's more! This is the best part!

*more drum rolling, low, rumbling kettle drums this time*

The technology has surpassed scientific knowledge so Aspie Boy is officially a statistical anomaly!

*sounds of crickets chirping*

Yep. that's right. 14 duplicated genes on the tip of chromosome 19. We don't know the clinical significance of it because there is no research or data to demonstrate a link to the duplications and any identifiable syndrome. We can't even say if this is what caused his spectral disorder! Isn't that so cool?! My son is officially an unquantifiable research subject!

SO COOL!

So, I gave the geneticist carte blanche. If the lab that did the test turns up similar results with other patients, there might be interest for further study, review and research. Right now, not even the human genome results can signify the value of the 14 genes in question. As it stands, all that is known about these replicated genes is what we phenotypically observe in MY son![1]

It's official, when it comes to Aspie Boy, I know exactly what the doctors know. Maybe a little more because I live with him. That just makes me giddy.

Treatment plan is as follows: continue with current physician care. Report any new developments in his disorders and delays. Visit the geneticist annually, ad infinitum.

I always knew Aspie Boy was special. Now I have proof. He has 14 more genes than all the other sons walking the planet.

I'm so proud!

*enter big fat tongue hanging out of my mouth making annoying and sloppy raspberry sounds*

[1]I smell a PBS documentary ... LOL

Ode to Sissy

Oh Sissy, fair of face
With hair of chestnut brown
Every morning when we awake
In your screaming we will drown

Your mouth, it opens oh so wide
Your pearly teeth laid bare.
It seems as though sound emanates
Even from your hair.

When you attempt to get my goat
By waking me this way
I will thrust the chore tub in your hand
"pick a job, I say!"

You'll have to take out all the trash
Wipe down the counters too
But first let me kiss your face
And shout, "How I love you!"

You stamp and hedge and do a jig
Your fists are balled up tight
You shout "it's dark in the bathroom!"
I quip, "Turn on a light!"

With huffing, puffing, daring glares
Stampeding like a bull
You cinch up all the trash and whine
"The kitchen can is full!"

"So get a clean bag then my dear"
I sweetly sing to you.
You glower back with, sideways stare
Snatch a bag, then stew.

How you fester, how you moan
It makes my heart aflutter
All I really need from you
Is to take out the rancid butter!

"this bag won't open!" You declare
While holding the bottom end.
"Find the blue pull ties," I say
But you stand there and pretend.

You pretend that you don't know a thing
About the bags and the strings.
You fiddle, fidget, whine and scream
"You never show me all these things!"

"Oh, but yes, indeed my dear,
I showed you just last time.
you've done the trash with ease before
with savoire faire sublime!"

"I don't know what that means,"
You growl through your gritted teeth.
"It means you can open up that bag,
You adorable little peach!"

"fine!" you scream as you shake it free.
"Hooray!" I clap with glee.
You're not amused but I am glad
You did the trash for me.

"Just one more thing" I gently coo
As she carries out the sack.
"When you start our day by screaming
The consequence will bite you back."

"It's all about the choices, dear
I hope that you'll soon see.
Now carry out that trash
Then give a hug to me."

And when it's all said and done
Her gusto fading fast,
She smiles when she accepts
I'll love her to the last.

Doubting Thomas

As always, going to church resets my thinking, cools my temper, helps me get on board with God's plan. Hey, sometimes I even let God know I'm not keen on his plan, you know what I mean? And I think He's big enough to take it. After all, when it comes to a relationship with our Heavenly Father, after having been "abused" by the other humans on this earth, I think we're all a little bit RADish, don't you?

That said, today's message was about Thomas (who was a twin, did YOU know that? It was a little tidbit I learned today). Thomas the twin doubted Christ had risen. Thomas said he needed to put his fingers in the nail holes in Jesus' hands. Doubting Thomas who said he had to put his hand in the wound of Christ's side. Seeing is believing, Thomas said.

Then about a week after the resurrection, Thomas saw. And believed. And Christ said, (I'm paraphrasing so don't ya'll go pullin' out your Bibles and leavin' nasty comments about how I misquoted the scripture) Blessed are those who believe but have not seen. Of course, that would be the followers of Christ, post resurrection and ascension that accept the truth of the whole gospel having never met the Christ or witnessed his crucifixion and resurrection. Christ was even thinking of us, in the year 2010. We are blessed because we believe but we have not seen.

The pastor began waving a dollar around, asking the congregation, "Is this currency? Is it? Do you BELIEVE it is?" He waited until he had our attention and it appeared as though we were all in agreement, we believed it to be a form of cash. Then like a bait and switch salesman, he said. "Wrong. You do not BELIEVE this to be money. You KNOW it is money. I asked you if you BELIEVED it. There's a difference."

He went on to say that Thomas had to know to believe, that he doubted until he had the knowledge he needed but that Christ asks us to simply believe, without the knowledge. That the blessing comes to those who make this leap of faith.

And that's when I stopped listening to the rest of the sermon and began my internal dialogue with God. The mental health professionals do not know children like Sissy can be helped, they only believe it to be so. Their "knowing" is nothing short of a sliding scale interpretation of years of patchwork guessing about what might and might not work to help these kids! How can I believe it if the professionals don't really KNOW it?! The issue is I can neither know nor believe it. I don't have a restored wounded child that I can touch for myself. Have I lost hope that I can help Sissy? I need help to restore my belief, that there is a hope for Sissy and that hope is not me, not professionals in mental health, there is only one hope that is secure, Christ

Some where in the middle of that internal dialogue, the pastor concluded his message and it was suddenly time for communion. I contemplated not partaking because I just didn't feel like I had my heart in the right place. But I did anyway because there's peace and hope in that too. As I took the elements I prayed, "Let this begin the restoration of my hope for Sissy, for me, for my family."

I have to also find a peace that no matter what choice Sissy ultimately makes about seeking and accepting healing, it will not be because I failed to help her find that path. It will not be my lack of patience or determination that prevents her from a restored life. It will not be because I abused her in like kind or ceased to love her because of the abuse she bestowed upon me. It will not be my fault. Sissy's current and future reality is of her own choosing[1], as is mine. I have and will continue to fulfill my role in her life with unfaltering consistency, patience, acceptance, kindness and love. I will be true to myself and when I become a doubting Thomas (perhaps I'm his twin?), I'll cry out to God once more. After all, He's Sissy's Creator, too.

[1] you might say that Sissy's dual diagnosis prevents her from being fully capable of embracing and accepting her ability to make the choices for her life that will net her a good future. I say otherwise. Yes, allowances must be made for the challenges she faces but she's not cognitively impaired. She has an above average IQ. She has the mental acuity and acumen to internalize the therapeutic techniques that she is being taught and to use those skills to overcome her disadvantages. It comes down to choice and choice alone.

Pardon my French

So i'm reading more about the terminated russian adoption story. As always, more details come out later. blah blah blah (not to the story, to the media)

Quoting excerpts from a web article:
Hansen chronicled a list of problems: hitting, screaming and spitting at his mother and threatening to kill family members. Hansen said his eruptions were often sparked when he was denied something he wanted, like toys or video games.

"He drew a picture of our house burning down and he'll tell anybody that he's going to burn our house down with us in it," she said. "It got to be where you feared for your safety. It was terrible."

Hansen said she thought that with their love, they could help him. "I was wrong," she said.

In February, Hansen said, the family could take no more. The boy flew into a rage, snatched a 3-pound statue and tried to attack his aunt with it. Hansen said he was apparently upset after his aunt asked him to correct math problems on his school work.

But this little nugget nearly made me spit out my drink
Adoption experts say many families are blinded by their desire to adopt and don't always understand what the orphans have sometimes endured — especially older children who may have been neglected or abandoned.

"They're not prepared to appreciate, psychologically, the kinds of conditions these kids have been exposed to and the effect it has had on them," said Joseph LaBarbera, a clinical psychologist at Vanderbilt University Medical Center in Nashville.


I have one retort.

No Shit, Sherlock. Dumb Ass.

And how many of those hoity toity clinical psychologists are stepping down from their high Vanderbilt horses to get in the trenches and discover just how bad it really gets? Or better yet, HELP us?!?!?

oh wait.

They would rather tell us we're doing it all wrong, that WE'RE the ones that cause the children to escalate to violence. I forgot. Silly me. I'm just an ignorant adoptive mom that thought she could love a traumatized child into healing.

Guess this one is burning my britches a little. Perhaps if Sissy hadn't given us more of the same crap she started the day out with, I'd be a little less ... pissed off? And I suppose I could have opted to call the IFI team to help us but ... yeah, we were at the lake, 40 minutes from home. And she was in the van, screaming her head off because she was HORRIBLE to two little boys on the playground. And this while she was being supervised!!!!!

If anything good comes from this adoption travesty, I hope it includes a more global understanding of what adoptive families endure when trying to help these children and just how piss poor the mental health system is to guide us through these unchartered waters successfully. I hope it creates an overwhelming response from adoption agencies to thoroughly educate potential parents. I hope it gets the monkeys off our backs, the comments from typical families who don't understand the very drastic and often bizarre things parents have to do to ensure safety and sanity in the home environment for RADishes.

I'll stick my neck out there one more time, I maintain that we need advocacy, we need a vocal organization that gets the attention of the big wigs! RAD blogging is great, but is the media reading all of our posts about this adoption, are they asking the other moms that are also living Torry Hansen's nightmare what WE think? NO! Because they don't know we're here!!!! They don't give us a voice because they don't know we have one!!! It's like Horton hears a Who, only no one is hearing us and trying to save us, not even Horton. And that chaps my ass. And it makes me want to drive straight to Vanderbilt and punch Joseph LaBarbera in the face!

Pop the lid off a wine cooler. I need to go chill out in the tub with that new bathset Corey gave me. I won't have to add hot water, I'm boiling already.

Good morning, do you know what your RADish is doing?

My RADish was sabbotaging herself.

Yep.

She expired her three days of lovely. Now we begin the 15 day escalation to full on rage.

She started it at 7:25 am screaming and waking up the whole house, "I have to use the restroom!" (she knows that unless it's a school day, we stay in our room until 8:00 and she can't escape unknowingly because it'll trigger the alarm.)

you might argue that the child should be allowed the natural, humane right to urinate. Except that she was able to hold her pee until 8:00. And she wasn't running to the toilet. More like sauntering nonchalantly. Dead ringer for how can I make everyone miserable?

Then the lying.

Followed by the manipulations.

And the bargaining that she'd do what we wanted when we did what SHE wanted.

then the screaming.

Oh, the screaming.

Aspie Boy came in from outdoors. "MOM! You can hear her all the way outside!"

Which made Sissy scream louder.

9:00 a.m.

This after last night's rousing and excited discussion with Sissy that she was just one day of good behaviors away from getting a "green level" status for the week.

And that was where I went wrong.

In what universe is it BAD for a parent to encourage and cheer on a child toward success and a prize?

In the RAD universe.

Silly me, I thought I was on planet Earth last night. I was laboring under the delusion that our celestial sphere orbits the SUN and not Sissy. She gave me a rousing reminder. My ears are still ringing.

thoughts on the Terminated Russian Adoption

I keep a private blog with screened posting. IntegritySinger is my pseudonym. I've blogged there since 2003.

On April 3rd, I wrote a private post, my thoughts about the difficulties of raising traumatized kids. I keep these types of posts private because many of these thoughts are fleeting emotions that don't propel me toward a choice or a positive direction. But sometimes I just need to pen the crushing emotions, even when I know those words can be hurtful. But this time, in light of the recent travesty about the terminated Russian adoption and the number of times it's been blogged about today with fellow adoptive mom/RAD mom bloggers, I felt the words from my other blog would be poignant. But please do not judge me by these words. Do keep in mind that when I wrote these thoughts, I was attempting to expel a particular emotion in a healthy way.

For the record, as it pertains to the terminated adoption, I do not agree with the way in which the adoptive family handled the crisis they believed they were in as parents of the child. That said, I can empathize with the anguish and fear that may have led them to make the choice of terminating in such an egregious way.

My thoughts from April 3rd on my other blog:
In an adult relationship, if the other partner is abusive, argumentative, derisive, accusatory, non reciprocating, combative, violent, unyielding, oppositional, and then, announces his/her allegiance of love and commitment to another party, then you face the inevitable conclusion, the relationship is dead, it must be terminated. Point of fact, the offending party has terminated the relationship by the very nature of his/her actions and language.

But when the other member in that relationship is a child, it becomes criminal, ethically questionable, amoral and socially viewed as despicable and unconscionable to terminate the relationship. After all, the adult member of the relationship should rise to the occasion and be able to teach the child appropriate relationship behaviors.

Except when they can't, when it becomes impossible to retrain a diseased mind, to correct malformed neural synapses that began in the imprinting stage of infancy or when the mental health professionals themselves all but admit that they are grasping at straws too when they offer their "professional" advice as to how to reteach correct relationship with an damaged child.

Then the new game becomes either dealing with the ignorance of society that doesn't believe a child could be so irreparably damaged or making the conscious effort to toughen one's skin and ignore the anger and jeering from adult peers and consequently, terminate those relationships too.

The alternative solution is to stay in the relationship with the abusive partner which only seems to eliminate one problem, the negative reverberations one receives from other adults and from some professionals that believe it is possible to heal these children. There is never a discussion from those professionals, however, as to the negative impact the traumatized child has on the adult parent, an impact that mars the adult's life forever and often times, mars the lives of the traumatized siblings as well. Neither are the adult peers willing to invest time in discussing and comprehending the pain of a raising a damaged child.

There is no "win". Terminating a challenging adult relationship is never easy but often leads the abused partner to a place of healing and peace. Terminating a challenging child relationship leads no one to peace neither does maintaining the relationship. The bottom line is, unless individuals have lived this hell for themselves, they will never fully understand the damage and impact a traumatized child can have on a family.

One of the readers from my other blog posted the following comment which I thought was equally poignant:
"sixty years ago, those same adults who are willing to villify [parents] now would have villified [them] for the choice NOT to permanently institutionalize a child. They're going with common wisdom, which has changed within a couple of generations."

All told, I'm a "what's the bigger picture?" kind of gal before I hang a verdict on something. There is always more to a story than what we see at face value. What do I know? Maybe this American adoptive mom was horrible right back to this child? Maybe the Russian orphanage was brutally honest and she ignored their wisdom because she thought she could beat the odds? Maybe it's all too big a stretch for humanity and the only answer to everything, is the quote I wrote at the heading of this blog: "life and our faith isn't about "handling" it, it's about clinging to the one hope that is secure, our freedom from sin and death"?

There, by the grace of God, go I. Every single second of every single minute of every single day. If His mercies weren't new for me every morning, how on earth could my mercies be new for Sissy every morning? Simply put, they wouldn't be. And that alone may be the difference, the defining line between my choice and the choice this adoptive mom made the day she put her son on a plane back to Russia.

sick again

I took my last antibiotic for the strep last Saturday. By Tuesday almost all of the symptoms returned plus some. So I went back to the doctor yesterday. Seems I'm either harboring the strep bug or I've got a sinus infection, or both. He checked me for mono and I was negative (thank goodness!) Now I'm on the Z-pack with a refill. 20 more days of antibiotics. I haven't been this sick in two and a half years!

Aspie Boy is sick too, acute allergies. So the doc put him on prednisone. Heads up. Steroids and Asperger's doesn't mix. If you think the boy can stim without steroids, you should see him stim ON the steroids! At 12:30 a.m. the poor dear came into my room and asked a very drowsy me, "did you give me my sleep medicine?"

"uh... yes."

"are you sure?"

I looked at the clock. "Son, have you slept at all in the last four hours?"

"I don't think so."

"I'm sorry baby. It's that new medicine. Try to sleep, ok?"

I gave him his second dose first thing this morning hoping the affects would wear off before bedtime tonight.

And surprisingly, Sissy has been a peach! Two weeks ago with all of us down for the count, she was escalating toward violence with very defiant behaviors some bordering on the psychotic. But this week, after Monday's mayhem, she's been positively perfect. It makes me shake my head. I swear, some days I think I'm the one that's going insane. I can NEVER predict her. When she's this lovely[1], I feel so bad about being keyed up and emotional over her unrelenting challenges. But the truth is, lovely for three days will equal dreadful for the next few weeks. At least.

So I'm trying very hard to enjoy every minute. Lots of opportunities for loving, caressing and meaningful affection happening! The Dad and I even had a nice long chat with her last night about what it means to show love and earn trust. And I think she soaked some of it up (at least, it felt like she did. you never can tell.)
Next week when I'm on this blog crying to ya'll again, remind me of this post, will you?

[1]lovely as defined for Sissy would be: minimal lying, minimal screaming, minimal defiance, easily talked through escalating situations, very little rebuffing when asked to do something, maybe even offering to assist (OMG! WOW!), minimal issues with personal hygeine, very little manipulation and I can decrease my vigilance when I supervise her with her siblings. Oh, and her room stays relatively tidy. Relatively. lol

Facebook followers

I share almost all of these posts on Facebook. It's been so much fun to reconnect with the amazing people in my life, people we've lost touch with either by distance or by time (and sometimes both). And let's face it, I'm wordy. So those 150 character limit status updates are never sufficient for me. So I link to my blog. And many of my FB friends (who are all IRL friends past and present), have followed my story over here.

I've also sent friends links to the blog via email. I haven't done this because I am seeking praise and adulation. Rather, I've been forward about my blog because so many IRL friends and family have specifically asked how they might pray for us or they've wanted to understand our struggle better. Blogging and then forwarding the links or sharing it on FB seemed like the most logical way to do that.

I wasn't prepared for the overwhelming response, the outpouring of love, the tears on our behalf and the prayers. But the one thing that has really puzzled The Dad and I, is that people are reporting that they see Jesus in us, in our life, in our humility and in our ability to keep on keeping on, despite it all. Somehow, regardless of our humanity, we have been modeling Christ's love. We have demonstrated peace in the storms and we have shown others that in the face of adversity, it is still possible to exhibit the fruits of the Spirit. Sometimes it makes The Dad and I furious when people say, "just when I think I've got it bad, I recall what YOU are going through and I know that if you can endure what you endure everyday with a smile, then surely what I am going through is easy!" because gosh, no one wants to learn that their life is the plumb line for others' lives! But still, we accept that role too because if we fully take on the call of Christ, then our lives are created for HIS glory, never ours. (But I'll be first to tell you that it sucks rotten eggs!)

A mutual friend of ours from my college days who is working toward his PhD in seminary school (or theology? I don't know. He can correct me. ;P) left me the following message on FB:

integritysinger, I read your posts periodically and want to thank you for taking the time and emotional outlay to compose and post them. We are not within a million miles of relating, but it breaks my heart to know you suffer so much, especially when i remember your contagious joy and smile. Please don't take that in any way that would evoke guilt in you. I *want* my heart to be broken for you. I *want* to keep reading these posts. For i feel like when i do, i momentarily touch the heart of God, and each time i read a post, i am reminded to pray for you.

It may sound trite, but in many, many ways you are exemplifying Christ to all who have eyes to see, in ways impossible for most. You understand Jesus' love, and the *voluntary* suffering that love brings upon the lover, far more than most. Whenever I'm worried about what God might think of me, frustrated by what He tolerates in others, I will need only think of you and The Dad. You are being Jesus to these kids and to everyone you know, exemplifying his fierce love. You are living, breathing embodiments of Christ himself. You know his heart in a way few ever can or will in this life.

I have no doubt that you will someday hear the words "Well done, good and faithful servant... Enter into My rest." And until that day comes, whenever you and The Dad feel alone, spent, and hopeless, remember we and many, many others, who remember you, pray for you, and who, if we could, would take you both in our arms and not let go.

So thank you for allowing me to share in your life, be it in an ever so small way. Thank you for breaking my heart, and please, keep writing honestly, please keep breaking it. Thank you for being Jesus to not only your kids, but to me.

My reply and I fully reiterate the last thoughts:
These are such kind words. The Dad and I have often discussed this phenomenon: that despite the difficulty of our challenges, we know inherently that our story is helping others in so many ways. We hear so often that the challenges we endure have been so overwhelming to others and yet, they report to us, we still laugh and smile and praise God. And we immediately quip back, "what else COULD we do?!" when faced with such adversity, it is ONLY CHRIST that sets us free and gives us the strength.

yes, we wish it weren't so. We wish there was a magic fix to all of it but that's not God's way.

peace and blessings to you in return. Please use our story to minister to others. Send them to the blog. If I can't be an example of Christ to others as I endure this lifetime, than I have accomplished nothing at all.

Integrity

What a girl wants

Sissy cooled her jets yesterday after about a dozen attempts to exacerbate me. And trust me, she made valiant efforts. Fortunately, I was not exacerbate-able. *phew!* I called the IFI team just to give them a heads up. She's really pushing the limits today, not sure what's going on with that. Any suggestions? Can you talk to her about it on Wed. morning? because the IFI team is coming twice this week. Thank heavens? LOL My jury is hung on a verdict as to whether or not IFI is going to help us help Sissy. At this point, The Dad and I are taking the stance of keeping the appearance of wanting to participate because that stance covers our shiny hineys.

Last night, to help them cool off from our 90 degree heat made worse by this insane pine pollen[1], I let them run in the sprinkler. Sissy was better? Hesitant to have fun? It's so hard to put a name to her mood and behaviors. She is so dis-regulated, even with all the meds they have her on. I sat on a folding chair in the driveway, keeping a vigilant eye on their fun. Wonder Girl was tentatively hobbling about, the Physical Therapist having given her a green light to start walking again. But I wasn't going to take the chance of leaving Sissy alone with Wonder Girl where running through a sloshy, wet yard was the game. Plus, Aspie Boy is prone to stray into the street (and sometimes strip).

As I sat there, contemplating my life as a mother, watching these children, MY children, running around and getting soaked, I was filled with ennui. Wonder Girl is the only one that is able to have fun with reckless abandon. But even then, she keeps a very keen eye on Sissy. Just the fact that a 10 year old and a 9 year old have to be supervised in the yard speaks volumes to my responsibilities as their mother. I say to myself, "you're over protective, they'll be fine. stop being a helicopter parent" but none of those cliches are true in this case. No, I'm NOT being protective enough, no, they won't be fine. No, this isn't helicopter parenting, this is wise parenting of special needs children. And it sucks. This is a hard road for me. Other moms might be able to take this in stride, but this chica, not so much.

I imagined what it would be like if a peer of non-challenged children was sitting beside me, watching my children with me. She might say, "I don't understand. They're playing just fine. Sissy is fine. Look at them, they're enjoying themselves." And that woman would be right, but only for that ten minutes of time. A ten minute segment of parenting joy that happens about once every 10 days of sheer mayhem and is consequently filled with grief. Grief, because the happy moments are so few and far between, because I have to be vigilant to find them and then soak them up because I don't know when they'll happen again. Because so much anger and screaming and hatred has happened between the 10 minute good times that it's hard to just let go of that negative energy so I CAN fully embrace the happy times. Because as I sit there watching them splash and scream, I know that when the water is turned off and it's time for bed, Sissy will be back to rage about her PH, I'll spend 25 minutes therapeutically parenting her through her bedtime routines and be so exhausted from trying not to lose my cool and be a proper parent that when I go to tuck in WG and AB, I'm too exhausted to do more than peck them. Because I'll have completely taken them for granted... again. If my peer of non-challenged children said, "it's not so bad, they're doing great right now" I'd angrily turn to her and say, "try saying that to a cancer patient when she is in between vomiting sessions from the chemo"

I've watched the videos over and over, searching for some clue as to how I might be a more effective parent, what doorway might I find that gets me on a road toward helping Sissy heal, what behaviors is she doing that trigger me, what behaviors am I doing that trigger her and finally I turned them off. Aspie Boy walked into my bedroom, complaining about a headache and I turned to face him and my dejection was showing on my face. Dejection because I can't see a way out of Sissy's nonsense. "Mom. Why are you watching those movies?"

"Because I'm hoping I'll figure out if I'm doing something wrong that makes Sissy scream."

"ARE you doing something wrong mom?"

*trying not to cry* "No son, I really don't think so."

"So why does she do that mom?"

"I wish I knew son, I wish I knew. But I'll be taking the videos to my therapist tomorrow so she can help me figure it out, ok?"

"Ok."

"Do you want some tylenol?"

"yeah."

he's such an amazing boy. I'm the luckiest mom ever. Sure, he has his quirks, sure, he'll be in a group home or assisted living, working a blue collar job at just the right amount of hours so it doesn't stop his SSDI, sure, getting married and having more children is probably not a good plan for him since he'll just pass along his genetic disorder, but he's MY son. And I think he's precious.

I gave him his tylenol, thinking all of those thoughts and then a pang struck my heart. I really, REALLY wish I could find that same love in my heart for Sissy. I had it once. So very long ago. It is just a faded memory now, the hope that Sissy would be my daughter, that I'd get to be her mommy, that I'd raise her into a beautiful woman that loves her life and the people in it. I never had high aspirations for my children. I just hoped for love and joy, peace, patience and happiness. I don't know if that will be a reality for Sissy and I.

I know what Nancy Thomas says, that you have to find something to love about the RADish and then stick with it. Make your face say LOVE! everytime you look at the RADish. Find something, ANYTHING that makes your face light up. Fake it till you make it. She tells a story of one boy that was so difficult the only thing she could think of that made her think LOVE! when she looked at him was that he was her tallest child. So she thought he's my tallest child! with love, everytime she looked at him, held him, helped him, nurtured him, parented him. I have to find that nugget for Sissy. Right now, I don't know if I want to, I don't know if I have it in me to dig any deeper.

What a girl wants? What this girl wants is to find happiness and love, peace, patience and joy in my life as Just me, as a wife, as a mother and as a woman regardless of RADs. Right now, I don't know if that's possible.

Right now, what this girl wants is to take a very long vacation with just The Dad so he and I can do what our peers of non challenged children take for granted every day: Live. Laugh. Love.

[1]if you've never lived where the pines are, you don't know what I'm talking about but good God almighty, it's been the worst I've ever seen it and this is my 14th spring in the state. the air quality has been so poor and Aspie Boy, Sissy and my allergies have been so compromised that we are taking daily doses of local honey, allergy meds, decongestants and STAYING INDOORS!

Survivor Videos

My therapist asked to view some of the videos we've created of Sissy's violent episodes at our next session. She's not questioning the authenticity of my claims, she is hoping to lend a helping hand in dissecting, understanding and providing therapeutic assistance to deal with these events. So I uploaded the videos to my laptop and watched them with as objective a point of view as possible. I was hoping I might discover something about Sissy's behaviors in the videos that I hadn't seen before because I was in those crisis events with her. I don't like to go to therapy sessions unprepared. I only have an hour and I don't want to waste a second of that time figuring stuff out. I like to spend that time problem solving after I have already identified the problem.

[aside] Right now Sissy is playing with an infant toy. She likes to engage Wonder Girl with these things even though WG will openly admit that she's not interested because these things are "baby toys". I didn't even remember I still had some baby toys laying around the house. (note to self - donate the darn thing to the church yard sale) Why do our RADishes prefer to gravitate toward items, TV programs and children that are developmentally below them? That's an open question for anyone. I'd love to hear your thoughts.

and now she's playing the piano. replicating the twinkle twinkle little star song that the infant toy plays.

oops. she got bored. just as I was typing the above thought. now she's pacing and asking me for things she doesn't need or really want. I hate weekends. I can't possibly replicate the strict scheduling nature of a school day even when I try. And I don't know that it would ultimately help Sissy. It would just become one more thing for her to rebuff me on. I've tried the love and logic approach of giving her two choices but when she gets boxed in, she screams. duh. she screams no matter what words come out of my mouth, so it's just easier to not let words come out of my mouth when she's near me.

I'm still not speaking to her beyond three word directives. She's been pesky but not difficult. It was nice to have a scream-free evening last night. She leaves for her outing in an hour. :-)

ugh. now she's opening up a jar full of beads to make something. This will last for five minutes tops before she gets frustrated trying to put the string through the little holes. (by the way, her behaviors are being typed in real time so as you've read these words, that's how long it took her to change her activity plan)

[Back to my original post thought, the videos]
So I watched them all. First, I had to turn down the volume. I tell people she screams. Loudly. I tell people you can hear her screaming when you're outside and all the windows and doors to the house are closed. I tell them this but they don't really believe it because they haven't heard it. She screams. Primal screams. My ears were ringing when I was through listening to the videos and that was with the volume turned down.

Second, comparing videos from before and after RTC, I can say with certainty that she's on a good drug mix. It might need some slight tweaking but the drugs have definitely taken out a lot of the psychosis factor. Before RTC, the videos show a wild-eyed Sissy that is screaming, scheming and moving very quickly with wild movements. And she is alarmingly disregulated. One video she is primal screaming and two seconds later she is sitting tall, speaking clearly and saying a thought that seems to have absolute clarity of mind.

After RTC, her videos show more infantile behaviors than before but more regulation (which I say tentatively because she still isn't regulated but it's marginally better). The intensity of her violence is lessened some and her mood is flatter. I think I can sum it up by saying the violence, mania and psychosis is still there but the meds are making it hard for her to get to the same level of escalation as before. It's kind of like a scene from a scary movie in which a monster is trying to escape a man hole in the street but someone is sitting on the man hole cover attempting to keep the monster in. The monster can pop up the lid some but the man can shove it back down with effort.

Third, the videos after RTC are shorter which easily quantifies the fact that she is getting regulated faster than before. Another positive.

[aside] and now she has spilled all the beads on the floor after making a bracelet that she decided after the fact she wanted to be necklace. I told her it was too short. She got mad and spilled them all. but if you asked her about it? she'd tell you they spilled by accident *enter baby whine with a sideways look at you to see if she convinced you* [1]

now she's picked them all up and put them into a plastic easter egg.

now she's putting more beads into a ziploc bag. (note to self: where the heck did she get a ziploc bag? When did she get that?)

and now wonder girl is trying to cut the new table cloth with the scissors that Sissy did not put away

and now she's interrupting me to ask if she can put on a tattoo.

and now she's asking if she can put her money into the bag that attaches to her bicycle.

and now she's pacing again with untied shoe laces that are clicking on the linoleum

[back to my original post thoughts]
Fourth, she is manipulative. Before and after RTC. When you watch the videos with an open mind, it is almost laughable. Her eyes betray her, as does her body language. It is very clear when she is screaming to get attention or to get her way and when she is screaming because she's past the point of no return (amygdala response of fight/flight). When I'm in the crisis moment with her, I don't pick up on those cues because I'm taking it all for the values that I see and hear which are a dis regulated child that is screaming at me. But the videos don't lie. Half of those moments were easily manipulations. [1] proof of my thoughts like the aforementioned. She really does make those sideways glances to see if she's convinced me or her dad of her manipulation. I saw them clear as day on the videos.

Fifth, and this is the most telling. As a whole, The Dad's stance just ticks her off. Flat our anger. There's no other emotion there except anger that he's told her to do something. But when I'm in the mix. Oh boy. It's scary.

In one video, she's screaming at her dad about homework. You can't see me because the camera is on Sissy, but I was sitting across the kitchen table from her, doing homework with Wonder Girl. WG and I were doing our best to ignore Sissy's outburst. At some point in the exchange with The Dad, Sissy immediately stopped her primal screaming and gave him a look of death (ha! Caught on video, this hairy eyeball isn't my imagination!). There is no sound and then suddenly, you hear WG and I laughing. OMG. I watched the three seconds over and over. Sissy went from look-of-death glare at dad to a completely different countenance, her head spinning to look directly at me and ... I can't describe it. It's like love, yearning, hatred and violence all rolled into one facial expression. Almost as though my laughing with WG was a betrayal of my love for Sissy. Then, three seconds later, she is literally leaning over the table primal screaming at me.

A few months ago, right after this incident with Sissy, I was so shaken up by her response, that I discussed it in my therapy session. I told my therapist that it was like a demon was screaming at me. Sissy was leaning all the way over the table, holding a clenched fist to my nose, primal screaming about her spelling homework, all directed at me. But the original homework exchange was between Sissy and The Dad.

Now I see what happened. It was the dynamic between WG and I that set her off. Now I know why she escalates to violence against WG, she knows that WG and I have an appropriate mother/daughter relationship. Now I understand all of Sissy's other machinations - they are all geared toward triangulating her siblings and adults against me so that she has the upper hand. When she can't triangulate or manipulate them (which is almost always the case) she gets angry at ME. When she can't triangulate or manipulate me, she takes her anger out on WG (which, in her mind, is still taking the anger out on me because she's subconsciously declaring that our appropriate mother/daughter relationship should be destroyed) But of course, all it serves to do is strengthen my relationship with WG because right now, I'm the only protection WG has from Sissy. And this undesired result to Sissy's manipulation only escalate her rage more. Eventually, what I predict will come true. Sissy will have to keep upping the ante in her attempts to destroy the relationship I have with WG to the point of WG being seriously injured. I won't be able to convince professionals of this truth. Neither do I know how to circumvent this culmination. My only recourse is to stick with my maternal intuition (that is now supported by video proof) and to prevent Sissy and WG from having any alone time. Which is exhausting to say the least.

Sissy doesn't do this with Aspie Boy because number one, we have a mother/SON relationship which is functionally different, and because by the nature of his disorder, Asperger kids can't be manipulated or triangulated. Or at least mine can't be. Aspies only see black/white. Everything else is "against the law" as AB would say. Something the president should be notified about. The first hint of a supreme authoritative power like a president and Sissy backs down. Because that kind of authority is to be feared (because parental authority isn't truly authority in the mind of a RADish, rather it is an opportunity to out wit, out last and out play. [2] after all, isn't it the first parent that destroyed that level of trust? ergo, parents categorically can not be trusted [3])

In conclusion, I can apply these new discoveries to help appropriately parent Sissy. At least I hope I can. That said, what I've learned may or may not be transferable to other RAD children. However, I strongly recommend you create a few months worth of videos of your RADish in crisis or potentially critical moments in which they navigate correctly. Then watch them, after you've put time and emotion behind you. Analyze them critically. Learn from them. You may uncover some truths about yourself, your RADish and find a path toward healing that you didn't have before. Take them to your therapist (or theirs) and get a professional to help you work it out. But don't wait. Start today. We bought a cheapo $30 USB port pocket-sized video recorder that holds 10 GB. It was more than sufficient to do the job.

[2]out wit, out last, out play. The motto of the reality TV show, Survivor. I told a friend recently that I live Survivor every single day. Sissy tries to out wit, out last and out play me all the time. Literally. All.The.Time.

[3] this is not meant as a "dig" on first parents. It's just the subliminal message in a RADish mind, the trauma factor of improper parent/child relationship imprinting

april fools day highlights

Highlight number one:
Aspie Boy hates April Fools Day, apparently. He was in tears about it during breakfast. "It's lying! Lying is against the law! The president says so!"

Then when I picked him up from school, more of the same rhetoric, "It's a bad thing. April Fools day is bad. Because it means you are lying. and then you'll laugh for lying. and then you'll think lying is good. and you'll lie all the time because you'll like it."

[aside: he didn't actually come out and say it, but I think he was mentally making the conclusion that Sissy would be the type of person that would like to keep lying and he is tired of it. Which is language he HAS used lately, that he's tired of her always lying and screaming when you tell her what the truth is.]

Highlight number two:
Sissy announces, "Mom? do you know why April Fools Day is my second favorite holiday? Because it's all about lying. And I'm really GOOD at lying!" *big, goofy smile*

Highlight number three:
Sissy escalating at bedtime (AGAIN! ugh, what the heck IS it about morning and bedtime that drives her so insane?!?). The Dad reminded her that her behaviors have not changed at all since she was at RTC demonstrating that she is still showing no desire to change. He said that since IFI hadn't helped her thus far, we could just call and say we no longer want to be in the program which made Sissy REALLY furious. She started screaming, "But they make me feel good about myself! They like me! And I LOVE THEM!"

at which point I left the house.

because that was one comment to many for me. and after four nights of her escalating screaming that either required a phone call to IFI or their return to the home to deescalate, I'd had enough. Hearing that she loves two women that have spent a total of 15 hours with her, split between the two of them, was too much for me.

yeah. she "loves" them because Ms T has been triangulated successfully by Sissy and Ms M is taking her on an outing tomorrow. She "loves" them because they don't have to parent her. They don't have to tell her "no", they aren't here in the morning, getting her ready for school, in the afternoon helping with her homework, in the evening when she has to bathe herself. They come, they do cute little therapy things with her and leave. And I get to deal.

I know I should be the grown up here and just let it roll off my back. I know some subconscious part of her said those words because they would be hurtful. I know the best thing to do is to ignore her crap. But last night I didn't have the strength to ignore it and it was too much for me.

So I'm not talking to her beyond three-word directives. I'm not talking to her until I know that I've got my hatches battened down, my resolve shored up and my respite meter refilled. Yeah, Sissy's going on a fun outing with Ms M tomorrow and she's all giddy and glowy about it because they're going to buy something and intuitively, after all of the crap she's pulled this week, I'd say she hasn't earned that privilege. Whatever. I don't care. It means Sissy will be someone else's responsibility for two hours.