Bad Juju

WG had "career day" today in which she got to dress up as a community helper (as opposed to a traditional halloween costume). The children were to prepare 5 facts about their community helper and wear a costume that represented that career. WG chose to be a librarian. So cute!

The house we did today had bad juju or something. The job was underbid, the plantation shutters prevented the screens from being removed so it made cleaning the exterior side of the glass very challenging. The Dad and I were between 8 foot tall bushes and the wall of the home with all four pieces of the stack ladder when I realized there was a wasp nest hanging from a branch directly beside me. I yanked off a nail straight to the quick trying to close the side gate that got jammed in the mud. There was dog crap everywhere. I badly scraped my shin on a sprinkler head. I jammed up the other side gate. It was muddy as heck, the windows were disgustingly filthy, I sprayed Zep in my eye, The Dad sliced up his finger on a razor and then I backed the van into their mail box in my haste to leave when we were through. The van is scratched to crap and their mail box is now a lean-to because it leans to a side.

Maybe it wasn't bad juju or ghosty ghoulish Halloween pranks from the "other side". Maybe I'm exhausted, stressed and not thinking straight.

my van looks like crap and that makes me want to cry.

and if they ask us to pay for repairs on their mailbox, it will mean it will have COST us to clean their windows because as it stands, we made very little money on that job for all that work. And it was a lot of work.

At least I got a contact for tudusamom. Her hubby breeds snakes and so does our customer.

*sigh*

This was one of those days I wish I had stayed in bed.

It makes HER feel better

WG is reading circles around herself. They've bumped her up to chapter books, her last benchmark indicating she's above a second grade reading level and this only the 12th week of first grade. I'm so very proud of her and tickled pink that she seems to like math just as much, unlike her two older siblings. AB said last week while attempting his homework, "3 x 4? I don't know." And without looking up from her own math worksheet, WG blurted out, "12." She doesn't look a thing like me but gosh, if she hasn't picked up on some of my personality, likes and dislikes. Truly, if not for WG, I'd lose hope altogether that choosing the path to parent is a worth while effort.

AB is better since his doc increased his wellbutrin. The first pdoc we saw is not Sissy's pdoc and we were irritated with her style and nonplussed when she casually waved her hand and dismissed us saying, "he doesn't need a pdoc, his developmental delay specialist is my friend and managing his care just fine." Only that's not the case. Although his developmental delay specialist is indeed excellent at developmental delays, her lack of training in psychiatric needs and the medications for those needs is obviously deficient. Fortunately, after several months of begging, Sissy's pdoc has agreed to take AB as a new patient but not until March. So we tough it out. PDD-NOS and generalized anxiety have been added to AB's charts as per the once-and-done pdoc but I know the inevitable is looming. AB will get the bipolar label soon enough. However, with the exception of bouts of insomnia, stimming, manic behaviors and ocd tendencies, I think AB's bipolar will be significantly less severe than Sissy's. Of course, AB isn't RAD and he responds much better to medications than Sissy so that helps.

[aside]It does make me think, have the professionals ever considered calling bipolar a spectral disorder? FAS has been changed to FASD and autism is now ASD. Why not rethinking the DSM for bipolar as BPSD? Because clearly, it's spectral. Same goes for down syndrome (and this I know for certain that trisomy 21 does not always occur in every body system - I know because we typed AB for trisomy 21 in all body systems looking for mosaicism) Anyway. Thoughts from those of you that are privy to a life intimately connected with bipolar?

Bit The Dad's head off this morning because he asked a question about Sissy and I displaced my agitation toward him, apologized immediately for my anger and then pondered why I would be so edgy 10 minutes after waking. He made the supposition that if we didn't live in a constant state of stress and agitation because Sissy makes us all so raw, I'd likely never sound off that way. And he's right, but it doesn't excuse my behavior. I'm awfully glad he's so patient and forgiving.

Had a phone chat with Sissy's teacher regarding her week-long manipulation escapade that nearly landed MY butt in hot water regarding what could have easily been misconstrued as neglect about Sissy's medication. Sissy's ruse revolved around choosing not to work so she slept and then let the school believe it was a drug issue (they perceived the switch to geodon as the cause when the truth is Sissy's side effects are nil where as the resperidal had many issues to contend with.) In the phone chat I didn't bother explaining the manipulation games RADs play. I stifled my laughter when her cute little teacher told me how she explained to Sissy that "now she's lost my trust and will have to regain it, that I'm nervous that one day she really WILL be sick and I won't believe her..." because really? Like I've NEVER had the conversation with Sissy before? Like Sissy gives a flying *bleep*? Then, THEN the teacher tells me "last week we had the word 'inspire' on the vocabulary list and Sissy told the class that you inspire her." OK, that one nearly made me puke in the cell phone. I explained kindly that Sissy was talking smack for attention and the sweet little teacher said, "yeah, i kinda figured that was a lie." YA THINK!?!?

The PRTF is nearly finished but knowing what is happening to some other bloggy friends regarding their children being discharged because they "don't show any behaviors" and knowing that Sissy just recently snowed the psych ward with her "excellent behavior" I'm bleary-eyed and bewildered. What's the point of sending a child to RTC if they get sent home without any help for their needs? What's the point of dealing with the transition time back to home? What's the point of continuing with IFI services if Sissy never embraces those therapies to change her life? What's the point of even trying? The therapist said, "Well mom, if she goes and is only gone for 30 days, what do you hope to accomplish?" and it made me mad. Searing anger. What IS the point? I didn't have an answer for her question. It's an unending loop of pain and misery and torture.

Sissy sat there in her session and I told the therapist how Sissy was asking about my "tumor" and then being snarky and feigning ignorance about said conversation. I looked directly at the therapist and said, "She's lying but what's the point. She's ALWAYS going to lie." Sissy has given me the indication that she thinks about me having a tumor, probably tells people that I do. I don't even know what to do with a child that dreams about me being ill when I have bent over backwards to help and still ... STILL!!!...

Demoralized? Yes because in my little world, there is no morality. Furious? There are no words to describe my anger. Grieving? Worse than I've ever grieved in my life. Numb? Go ahead. Poke me with flaming spears. I won't feel it. Nauseated? Gosh, i can't even think about grocery shopping, let alone cooking. Hopeless? The death of our dog Hope was fortuitous of the death of my hope so, yeah. Thank God we still have Grace (who is still very skittish, sad and gloomy since her dog mate passed).

After the therapist left, I got WG to my friend's house, she is so very kind to take WG to and from church on Wednesdays for Cantate rehearsals. I didn't say two words to Sissy the whole drive there and back. And you know how RADlets do. If you're not talking, they are going to ask annoying questions just to get your attention, just to keep stoking the fire. I ignored her. Spoke only to AB. I was focused on the basketball I'd be heaving when I got home.

I went crazy. Literally. All of this, every bit of it sucks. I have nothing. I can give nothing. I am an empty shell. Sissy has pulled the plug on me and drained me dry. "This is not ME!" I screamed at The Dad who came home just in time for my cataclysmic break down. "I'm not this angry person! I'm not this mean mother that has to put a child on restriction for weeks on end! This isn't ME! This isn't who I set out to be when I became a parent! I can't do this anymore, I just can't!" And in between sobs and gasps and choking and squeaking I explained that I can't answer to people anymore, I can't tell one more professional about what I'm doing or not doing to help Sissy. That I choked when the therapist asked me what we hope to accomplish by putting her in RTC. That I can't, I just can't do this anymore.

He astutely said, "we accomplish getting a much needed respite for an extended time. No. Sissy won't learn anything. Who cares. We'll get to regroup."

Later I sobbed again, "and then she'll come back and it will be more hell to pay, more IFI, more therapists, and sure, we'll have gotten a break. We'll have had the chance to see how our life COULD be like. And then we'll return to hell again. It's torture. It really would be easier to never know that my life, our family, our home ... could actually be nice. That no, I'm NOT this way, that it really isn't ME. and she'll come home again, and be worse."

All she has to do is make the choice. It's the easiest thing in the world. Choose not to lie. Choose not to rage. Choose to use the therapy tools. Choose to obey. Just choose, damn-it! But she'll never choose it. She'd rather choose to make us all live in hell because that makes her feel better.

Epiphany!

Merriam-Webster defines epiphany as such:
3 a (1) : a usually sudden manifestation or perception of the essential nature or meaning of something (2) : an intuitive grasp of reality through something (as an event) usually simple and striking (3) : an illuminating discovery, realization, or disclosure

After weeks on end of extreme exhaustion, frustration, mental annihilation, emotional anguish, utter despair, escalating anxiety and unmitigated fury regarding Sissy's complete unwillingness to embrace truth, wisdom, change and discipline; after weeks on end of her lying, deceitful, manipulative, hateful, spiteful, violent, disrespectful, rude and conniving attitudes and behaviors, The Dad and I have had an epiphany.

There we sat, side by side on the sofa, attempting in vain, once again, to help Sissy see the error of her thinking and the certain path of doom laid before her because she fails to choose wisely, we were exasperated. The Dad was fuming and I was numb, as I have been for weeks on end. Sissy? She was raging. Duh.

Finally, I said with a sigh, "well Sissy, it really doesn't matter. Write the sentences for lying or don't. Just know that you won't get to wear the cat costume for Halloween ... again."

The Dad turned to me and said, "Right. Because she was supposed to have worn that costume last year but didn't because she continued to rage and choose poorly."

"Yep. We're exactly where we were at with her, one year ago."

I swear, after I said it, the earth stopped for a nanosecond. Maybe it was the aftermath of the tsunami in Indonesia, maybe it was the heartburn from the dressing on my southwest grilled chicken salad, but I swear to you, the earth stopped.

The Dad and I blinked at each other and then...

WE BURST OUT LAUGHING!

Because OMG! The CRAP we've been through this whole year with this kid, the crap we've done for her, the crap the therapists have tried to teach her, every second of it, every.single.thing and we're exactly where we were at with her one year ago.

We've been staring down on the face of a raging, mindless fool that refuses to accept consequences for her actions. It's the same idiotic insanity day in and day out with her, no matter what we do or say. And it all boils down to the same stupid Halloween costume she didn't get to wear because she'd rather lie, manipulate, rage, cajole, deceive, irritate, harass, ignore and abuse than do whatever inane thing we've asked her to do to EARN SOMETHING SHE HAS TOLD US SHE WANTED.

Three weeks after last year's nonsense, her butt landed in RTC. Guess where she'll probably be three weeks from now? RTC. Will it matter?

NO!

And that's the epiphany. 100 days at RTC, intensive family intervention for seven months, CBTs, DBTs, social stories, therapies, respites, IEPs, medications, pdocs, psychologists, social skills, unskilled wrap around services, CBAY waivers, action plans, crisis plans, cops at my front door, EMTs and ambulance rides to the ER, 10 hours on my ass in a hard chair - twice in 7 days - 72 hours in a psych ward, a dead fish, revoking of privileges, a safe room with padded walls, removal of all personal items, threatening harm to our dog, being incapable of being left unsupervised for 2 seconds, stepping on her kid sister's stitched up ankle 5 days after the dog bite, cutting her hair, hours upon hours upon hours dealing with hygiene, constipation, toileting and showering, having to answer to all of the professionals about what WE'RE doing to help Sissy, all of the angry friends and family members that don't understand, all of it, every single second of it all, all of my time, money, energy, hope, love, worry, concern, effort, all of it

WASTED

because she still won't do the simple thing we've asked her to do as a consequence for a behavior. She still won't earn a privilege. She still won't respect us. She'll still lie first and foremost. She'll still tell unsuspecting people how horrible her parents are, how miserable her life is because of US. She still won't reciprocate love but will still demand it from us ad infinitum. She still refuses, refuses, REFUSES to be a "normal" human regardless of the interventions acted in her behalf. She still rages for hours on end, throwing things, kicking, hitting and punching but mysteriously never loses her voice. She still hurts those that try to love her. She will not change. She will be this way

FOREVER

and there's not a damn thing I can do about it.

Except laugh my ass off. Which I did. And so did The Dad. And WG was bewildered and Sissy was raging because she didn't get the joke. But we laughed and laughed and laughed. In between gasps for air, The Dad replied to Sissy who said, "It's not FAIR!"

The Dad said, "Fair? FAIR!? Sissy, don't use big words you don't understand!"

and we high-fived and laughed some more.

Here's all I've got left for Sissy unless by some strange miracle, she gets a clue:

"whatever, kid. Change or don't. Learn or don't. Be a functional human or don't. Love or don't. I'm over it, kicking the dust from my shoes and washing my hands of it all...and maybe wearing your cat costume come Saturday because you obviously won't have seen the need to obey long enough to earn it."

Addicted much?

I'm still working but here are some of the finished panels from last weekend's retreat:
The Baby quilt
I LOVE the way this one turned out! It looks so cute.

Pillow cases for WG and Sissy
WG loves hers. Sissy's is rumpled up in a corner of her room. I'll reserve my comments about that for "off blog".

The Turkey Panel
Good golly, this one burned my britches but my, it looks so pretty! Matching trivets and table runner still in the works.

The Dad's throw quilt
The Dad's quilt is an easy afternoon project I learned on the retreat. It's called the "lasagna quilt", a jelly roll of 2.5 inch strips in 6 coordinating fabrics, sewn end to end. Then, take the two free ends and sew them length wise. Clip the loop when you get to the end. Keep matching up the ends, sewing lengthwise and clipping the loops. Depending on the number of strips, you will do 5-7 passes this way before the quilt is finished. Fewer strips makes a vertical panel. More strips makes a horizontal panel.

I can't afford jelly rolls at $35 a pop. I bought two fat quarters each of six coordinating batiks and strip cut them myself. If you purchase 6, 1/2 yards you'll get longer strips which will change the look of the panel. With fat quarters, each strip was only 21 inches long.

Another variation is to first butt each strip with a 2.5 inch x 1.5 inch of a seventh fabric that accents the other colors. (on the color wheel, think "opposite side" (ie) orange to green) After each strip has it's "butt" end, then sew the strips end to end. This variation adds visual appeal, interrupting the mosaic pattern of the strips.

Finish the panel with your choice of borders. I saw a 9 patch corner border scheme on a different quilt and loved it. had to do it. It looks so cool!

fabrics - glory be, JoAnn's had fat quarters on sale for $0.99 last week. I bought these batiks for a whopping $12. WHAT!?!? right? I know. Crazy.

the reason this quilt is called a "lasagna" quilt, this pile of strips looks like a pile of noodles

The finished work, a mosaic. In the batiks, it has a stained glass effect

Showing off the nine-patch in the corner of the inner border

So here's the deal. Yes, this is a lot of fabric, time and money. Except... it's not. I quilt on a shoe string budget. When I'm not planning a project, I'm scrounging remnant bins, discounted or discontinued fabrics or ends of bolts (for the steep discount). I have a small stash but they are all high quality fabrics in contemporary designs. I'm also a hound dog for sales. Then, I pull from my stash for my projects. I also save any scrap that is 2.5 inch or larger and any strip that is 1.5 inch wide. In addition, I also cut up my scraps to 2.5" squares, 3.5" strips, 5" squares and fat quarters. I have them in baggies according to size. It makes finding them easier. All three of these panels were created at very low cost.

In this life, we're going to have addictions. I've accepted it. No point in denying the human yen for repetition. The catch is to be addicted to something that you can do cheaply and that won't harm you. Quilting is a safe bet for both.

Anger, the setting sun and a basketball

Scripture says not to let the sun go down on your anger. But I have a problem. I'm furious and I have no outlet, no reasonable way to express the volatile rage. So yes, the sun goes down on my anger a lot which means I stuff it the next day in an effort to renew my mind and body and to deal with the new day's crap. And that only works for a little while. Before I know it, the anger is spilling over and I'm angry at innocent bystanders and finding the need to apologize to those individuals that got caught in my crosshairs. Which is fine for a little while, people are very forgiving but eventually, they'll say, "hey! Tread lightly! Quit taking it out on me!" And they'd have a point.

Yesterday morning, after having spent a lovely evening camping out with WG and her Daisy/Brownie troop, she and I returned home to two bleary-eyed men. The Dad and AB had had just about all they could take of Sissy's shenanigans which included a 2.5 hour rage fest that necessitated AB missing his riding therapy... again. And to be frank, without saying so to one another, WG and I were both royally p-oed with having to return home to deal with Sissy ourselves. It was just so refreshing to be with other mothers and daughters of sound-minds and very jarring to return home to insanity ... again.

So the men left for a weekend away and before we knew it, WG and I were angry with one another. We were biting each others heads off, being snippy and rude. I took a time out in my room and thought. WG and I are not mad at each other, we're mad at our situation. We need to let out this anger!

I found WG brooding on the sofa, sending death-ray dagger glares at the blank wall of Sissy's room. "WG?"

"WHAT!"

"We need to talk."

"hmmmph!"

"WG, I'm not mad at you. I'm mad about Sissy."

"ME TOO!!!!"

"I thought so. Let's make a pact. Every time I'm grumpy about Sissy, I promise I won't take it out on you. Do you promise you won't be grumpy at me?"

"But mom, I'm just so mad!"

"I know. Me too."

"it's not fair! Every time I have fun I remember that I have to come home and deal with HER!!!!"

"I know. I feel that way too."

"I hate it!"

"me too."

"GRRRR!!!!"

"I understand. I want to scream too. What do you think of my pact? If we can be nice to each other all day even though we're mad about Sissy, then we'll watch a movie in my bed tonight. Deal?"

"DEAL!"

WG and I pulled it off. It was our secret game. Every time one of us started to get snarky, the other one made the you're-not-mad-at-me face.

But it didn't solve the problem of the pent up physical anger. At one point I found myself in the front yard, pacing like a caged lion, trying to figure out how, HOW! was I going to get out my anger in a safe and productive way? Then my eyes stopped on the basketball at the base of the free standing net in the driveway. Now, playing basketball is useful for anger, but it just doesn't quite cut it. I needed to heave that basketball over and over. Eureka! In the garage is a leftover panel of 3/8" plywood from Sissy's safe room. So I tried it out.

THWOCK!

The basketball hit the plywood with an anger-satisfying sound and it rebounded perfectly back to me with one bounce.

THWOCK!

I did it again.

THWOCK!

Again and again and again. I pounded that basketball hard and long until I was out of breath and the pent up physical anger had simmered. WG came out and sat on the steps that lead into the house. "Mom? Whatcha doin'?"

"Exercising."

"Mom. That's not it. You're mad."

"Yep."

"feel better?"

"yep."

Then this morning, after helping out with WG's Sunday School class, Sissy came to the classroom to meet us and I swear, if WG and I were cats, the hair on our backs would have stood up and our tails would have fluffed. It was that instant, just seeing her. Before I knew it, WG and I were furious again, fuming and festering. Sissy hadn't done anything at that moment, WG and I are just exhausted of dealing with the never ending barrage of miscellaneous little behaviors that she does over and over and over and over...

Somehow, I got the three of us through the grocery store without anyone losing their minds (which was tough to do, let me tell you! WG was screaming, "get her away from me!!!") and when we got home I said, "WG, let Sissy go in the house for a minute. Let's talk."

We talked some more about our anger and I said, "WG, remember yesterday when I was chucking the basketball in the garage?"

"yeah."

"It really helped my anger. Will you try it?"

"ok"

WG got dressed into her play clothes and went straight to the garage. She pounded that ball so hard it made the pictures in my bedroom rattle on the wall. After about ten minutes she came back in with a smile on her face. "WOW! that's much better!"

Scripture might tell us not to let the sun go down on our anger, but that does little to validate an individual's anger, nor does it help dissipate the rage in a constructive way. I watched a movie the other night in which a character took F*ck walks. He'd storm off and out loud cuss up a storm about whatever was pissing him off. That could work, as long as your neighbors don't call the cops or assume you have Tourette's. In that case, I'd say, get yourself a basketball and a 3/8" panel of plywood, lean it up against the garage wall and pound the crap out of it until you can get to a place where you can go to bed and not be angry anymore.

Like I told WG, Sissy will never stop being Sissy. She will ALWAYS be difficult. We can't make her change. BUT, we can change how we deal with it.

We can grab a basketball.

The ignorant 90%

Going away is wonderful until about an hour before you have to pack up and go home.  Then  reality comes screaming back in your face. 

Our weekend respite for Sissy fell through at the last minute on Thursday so The Dad had to tough it out.  He was bedraggled by the time I walked through the door Sunday afternoon.  Sissy held it together all day Saturday but came unglued on Sunday before I got home.

Finding the need to "replace" another member on our therapy team for Sissy, in part because of the respite fiasco, I'm getting weary of discovering that the trained professionals know so little. It is tiresome to always be the on-the-fly educator for the newbies and even more exhausting when the newbs demand explanations for my parenting choices. Um, yeah. Ok. Because you've been doing this for HOW long and it's only your day job?

It's disconcerting to learn that at 36, I have wandered so very far from the nicey, nice little gal I was when I set out on a course for life. 99% of my attitude stems from butting heads with people that think they get it but have no earthly clue. The other 1% is grief knowing that I DO have a clue and really wish I still wandered the globe in ignorant bliss.

The staggering truth? Despite the fact that 100% of my social, educational, emotional, mental, physical, financial, and spiritual life revolves around being in contact with persons with mental health issues and developmental delays, only about 10% of the global population is afflicted. So my current reality represents only one tenth of the truth of what life could be like, if only...

I won't lie, it is extremely challenging to enter the homes of the very affluent persons that live in our community so I can wash their windows. Bathrooms larger than my bedroom (which includes our business office). Hall closets larger than my bathroom. Garages with automobiles that total in value three years of our earned income. Trappings and trimmings of life that I don't even know exist except for the fact that I see it in others' homes; that I don't know exist because I don't have time to even pine for trappings and trimmings, let alone shop for them.

Yes. I enjoyed the quilt retreat. For the most part, I sat under the california king size quilt I'm hand quilting. I sat and stitched and thought of many things. I tried to laugh and be merry but mostly I contemplated the silence and how blissful it was. I also tried not to be jealous. Some of the women had quilting supplies and accessories valued at more than a new automobile, and I quilt on a shoe string budget, scrounging remnant bins and ends of bolt pieces to acquire a stash of fabric that I might use later for projects that I self create. Oh yes, I do my own quilting math, thank you very much. And my machine is a 15 year old JCPenney model. Compared to the Berninas, Janomes and feather weight singers, my machine is like a two door 1973 datsun compared to a 2011 Lamborghini. They talked of their trips to quilt stores, conventions, shows and how they set up their sewing rooms at home and I ... had nothing. Nothing to say at all. Because what do you say when you're "sewing room" is the kitchen table that is still sticky from jam sandwiches?

My life is so radically different from anyone elses perception of "normal" that it's not even worth discussing. I'm tired of trying to explain it to people so they can get irritated at me or say something that irritates me. I'm tired of being the professionals' educator. I'm tired of being face to face with the other 90% of the world that doesn't have a clue.

AB had a rough morning and an equally rough afternoon. He bolted through the front door in a fire and a fury and threw himself on his bed when we got home from school. I went in to console him and he drew away from me and got as close to the wall as he could. Without a word, I grabbed the sensory brush, lifted his shirt and began brushing. He cried silently to the wall, I cried silently to the back of his head. I wanted to say, I know son, I know. I understand EXACTLY because I feel that way too. And there's nothing, nothing in the world I can do to fix it but instead of talking, I brushed. Then I rubbed his hair, kept buzz-cut short because anything longer becomes a sensory issue. I climbed up on the bed and hugged him, knowing he was safe at that point and wouldn't haul off and hit me. And I cried some more because I'm SO tired of telling Sissy's therapists, "BUT I HAVE AN IMPAIRED SON TOO!!!! SISSY ISN'T MY ONLY ILL CHILD!!!!!!!" He finally turned over and hugged me, wiping the tears from his eyes.

Sissy's weekday respite provider arrived on cue and I got up to greet her, wiping tears from MY eyes. "You OK?" she asked?

"Yeah. Rough day for AB. It kills me that I can't help him some times."

I wanted to say, but no one really cares, because you're all here for Sissy but what's the point? The rest of us?

The rest of us cry silently because what's the point of trying to explain it to the ignorant 90%?

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Jury's still out on how Sissy is going to do on geodon. She's getting hyper spazzy and her respite provider and I agreed this evening it's time for a call to the pdoc. Sissy's individual therapist asked her to journal her thoughts about returning to RTC (still waiting for paperwork - UGH!) and all Sissy had was I'd be sad and homesick.

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I got a lot done this weekend on quilts and such and will post pictures later as I have unfinished work still waiting on me at the table and I want to post it all at once.

Geodon. RETREAT, RETREAT, RETREAT!

Are you using geodon for your kids? I'd love your opinion on the drug and how it affects your child. Feel free to email directly if you'd rather discuss off-blog for privacy reasons.

 Sissy is titrating off resperidal and onto geodon.  Max dose after full titration will be 60mg.  Then we watch/observe for two weeks before we add more.

Hmm...

titrating meds on an already disregulated child... yeah.  I'd rather get a deep cleaning at the dentist, thank you.

Biggest symptom right now - hyperspazz and quick rage flash (and that would be uber quick because she usually goes flight/fight rage in 3 seconds)  Today was a rage in the school parking lot before I even got them home.  Fun, fun.

All I've got to say is, thank goodness for the safe room because when we got home, she flew into the house, heaving backpack across the living room and slamming the door behind her.  

*nonchalant glance at WG with a shrug of my shoulder while we stood in the front entryway bewildered* "So... how was YOUR day?" 

WG gave the typical response after Sissy goes to rage. Her facial expression says, seriously?  you're going to ask me that particular question right NOW?  complete with a dramatic dip of the chin and an upward glance of the eye followed by a shoulder shrug rebuttal and a roll of the eyes.

And that's all the time I'm going to devote to Sissy-speak for today.

QUILT RETREAT!!!!

 Here's some photos of the things I'm going to be working.

Sissy's teacher is having a baby girl sometime before spring.  She was her teacher last year too and my personal rule is, if you have to teach my kid two years in a row, you get perks.  (this has actually happened before when Sissy and AB ended up with the same first grade teacher)

Color swatches for the baby quilt

 180 cut blocks - 3 inch finished squares

 The finished quilt will be a random block pattern with a 3 inch border and matching binding and back in the maize/salmon floral print.  Finished size: 45x60

Turkey Panel with 9, 6 inch complimentary squares

 Am I the only weirdo that has to map out her quilt plans on graph paper BEFORE she cuts and quilts?

 The turkey panel was a door prize at last year's quilt retreat.  True to my original plan, I will be making a hanging panel for my kitchen for every month.  Turkey will obviously be November to honor US Thanksgiving.  (I know my Canadian readers just celebrated thanksgiving on Monday so HAPPY THANKSGIVING!!!)

And because I'm notorious at scrounging for end of bolt bits, I made this last night for WG.  She has outgrown her baby size polar fleece throw and is making noises about wanting a room update (it's pink and purple vertical stripes with three foot Dora painted on the wall.  UCK.  She is a tomboy.)

I only like you a little

Here's my initial impression, when I can stand outside of her responses and not take them personally.

For once, Sissy is being honest about how she feels, which, albeit cruel and nasty to the family that loves her, is progress.

Last night The Dad got it on video as proof. Sissy said that she does not care about us as long as she gets what she wants. This is something she's been saying for a few weeks now but finally, we can prove it to the "powers that be".

Tonight she wanted hugs goodnight. Like a robot, I did the casual side hug like I always do and then she sidled up to The Dad. He flatly refused. Why should she want to hug someone she doesn't even like?

And that's when she said it, deadpan face, no emotion, "But I do like you, just only a little"

When asked how she feels about mom, same response.

So, without getting angry or upset, I explained that affection is a privilege of a reciprocal, loving relationship. That we would always be kind and provide for her needs but that if she wants to return to an intimate relationship that includes hugs and kisses, then she needs to decide if she loves us. Then I directed her to her therapists if she needed help understanding how to do that.

She was angry, said that she NEEDED a hug and I called her bluff. "because it's a habit?"

"YES!" came out quickly.

The Dad asked her, "Do you love yourself?"

"YES!"

"Why? What about you do you love?"

"I'm pretty and I'm nice."

*we both had to bite our tongues about the nice

I asked her, "who is the author and creator of love?"

"GOD!"

"Very good. And God says in scripture that we are to be either hot or cold in our love and devotion toward him. If we are luke warm, that is, if we only like him a little, He says that he'll spit us out of His mouth."

*grunting*

"In other words, you either love God or your don't. You either love your parents or you don't. Hugs are for loving relationships. I'll rub your back if you're having a bad day, I'll brush your hair if you ask, but I agree with you dad. Hugs show love and you've openly admitted that you do not love us."

She went to her room and raged herself to sleep.

I really can't begrudge her for being honest. It might hurt like the dickens, but she's being honest and if there is one mantra we have drilled into her head, is that she be honest with us and with herself. Can this be called progress? That's tough. I think if anything, it helps make a clearer picture for her dad and I about how we should proceed in her therapy, psychiatric and psychological needs and how to manage her well-being in the home. It also absolves us of guilt.

*shaking my head* I never, in my wildest dreams could have imagined that this is how parenting might be. Never. It's a nightmare that I can't wake up from. My desperation to help her see and understand love is nothing more than a fire that will never take to flame. I weep for her, I mourn, I pray that God in His infinite wisdom has mercy for her soul. She is the product of her circumstance and it can not be undone. Yes, feelings change, yes, girls her age are moody and mouthy but no, under no uncertain terms is this the definition of a "normal" 10 year old girl in a relationship with two solid, grounded, loving, loyal, fair, honest parents that exude integrity. She does not, in any way shape or form, reflect our influence. I doubt that she is capable.

I imagine how Sissy might have been if not for the want of better brain chemistry and the absence of early childhood abuse. I see a beautiful, kind, loving and gentle child and that breaks my heart the most.

Crying

Today started out with another struggle to keep a panic attack away. I can't keep living every day wondering when Sissy is going to rage again. It's making me very jumpy, irritable, weepy and angry.

I found myself getting very teary a lot but I pushed that away too.

And she was obnoxious, and defiant, manipulative and superficially sweet, angry, untrustworthy, incapable of leaving unattended for 10 seconds, she raged, she told The Dad that she doesn't care about us and then asked about food ... she was Sissy. Why do I bother hoping for anything more than that? It only does her a disservice for me to care or to hope or to love her beyond what she is capable of.

Truth: If we didn't give a flying flip, Sissy would probably manage much better in a home environment.

But how in blue blazes does a mother turn off her "love button" for her daughter? It's not possible. Every time I think I can successfully pull off the I-will-be-the-clinical-robot-caregiver-for-this-child-and-not-expect-love, a part of me dies inside. It hurts SO bad.

I'm not really sure which hurts more,trying to not love her or knowing she will never be capable of reciprocating my love, that my love may actually be hurting her.

So I sat on the back porch and sobbed. Sobbed until I thought my heart would stop. And the anger built because this is so impossibly unfair, mean, cruel and heartless, all of it. Infertility, adoption, mental health issues and developmental delays, abuse and RADs, and a God who seems so indifferent to it all. What I really wanted to do was break things, tear it all to shreds and get a can of spray paint and spray profanities indicative of my pain all over everything, and I do mean EVERYTHING. But all i could do was sit there and cry.

Then i did what any reasonable woman in my shoes would do. I tore up the Prayer of Jabez book. Because like hell does Bruce Wilkinson with his fancy schmancy PhD have any effin' clue what this life is about. Seriously, the Prayer of Jabez is gonna fix this? Prosperity? Reality check - i live in a tiny house that is falling apart. The Dad drives a truck that is as old as our marriage. I've given 100 million percent of my life to Christ's cause and still there is pain in this life I lead. Not prosperity. Pain.

I would have burned the torn shreds but I didn't want to set off the fire alarm and wake everyone up. I thought about emailing Dr. Bruce to tell him what I thought of his stupid feel good philosophy on prayer and self motivation, you know, tell him where he could stick his little book? But I didn't because I wouldn't have come across as a rational woman. It would have just been another "delete this email because clearly this woman is psychotic" message that crossed the desks of some peon that works for the all mighty Dr. Bruce.

I wonder if the pain, anger and tears will ever stop? I wonder if the Dr. Bruce's of this world will ever care to notice that their stupid feel-good motivational twists on some rogue biblical philosophy are empty, mindless drivel that serve only one purpose, to fatten their personal bank accounts?

yeah, and that will happen the day Sissy decides to stop raging and start loving back.

Blind

When I can't make
the words come out
It's just because
I want to shout.

Sometimes the words
Are not enough
Only screams
Will have the stuff.

I want to punch
Kick and yell
This mounting angry
Sure can swell.

I used to be
So very kind
Now I know
I was just blind.
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The Dad and I had the same dream last night which I have to admit, is really freaky but telling of our anguish. We both dreamed that wee were kidnapped by a dark haired man with tan skin. In my dream, he was part of a family group from the mafia. In his dream, he was a hill billy. In both, we knew that to attempt to scream or escape would be death. The tan skinned man held a gun to my head when I tried. When I explained that I had no money, no cash, no credit cards on me, no valuable possessions, NOTHING worth kidnapping me for, he laughed.

-------------------------------------------------------------
pdoc says we could try hospital homebound education for Sissy. I just laughed. Right. And give her the opportunity to harrass me 24/7? I don't think so. We are all worried about Sissy's unabated weight gain on the resperidal. We are titrating her on geodon over the next 10 days. do I think it will make a difference in her ability to control her rage? Not for a skinny minute.

Corn, cows and quilts - I wanna go home

Thanks to my pals here that are from "home", they send me great stuff that makes me nostalgic and verklempt. My BFF is still there. The cows are still there. The quilts are still there. The Phillies are still there (GO PHILS!), my alma mater is still there (WE ARE...PENN STATE!) 14 years in this god forsaken state and I still want to go home.

Tonight's view from the corn maze and dairy farm fall bonanza was as close as I'm gonna get.

Until I get back there, here's a funny email from one of my PA gal pals turned redneck:
don't know the original author so I can't give credit

The rules of rural Pennsylvania are as follows:

1. Let's get this straight: it's called a 'dirt road.' No matter how slow you drive, you're going to get dust on your Lexus. Drive it or get out of the way.

2. They are cattle. They're live steaks or walking milk bottles. That's why they smell funny to you, get over it. Don't like it? I-80 goes east and west, I-81 goes north and south. Pick one.

3. Pull your droopy pants up, you look like an idiot.

4. Turn your cap right, your head isn't crooked.

5. So you have a $60,000 car, we're impressed. We have $150,000 corn pickers and hay balers that are driven only 3 weeks a year.

6. Every person in rural Pennsylvania waves. We think of it as being friendly. Try to understand the concept.

7. If that cell phone rings while an 8-point buck and three does are coming in, we will shoot it out of your hand. You better hope you don't have it up to your ear at the time.

8. Yeah, we eat scrapple, pot pie, funnel cakes, haluskie, pierogies, shoo-fly pie, apple butter, chow-chow, and schnitz un knepp. Don't like the sound of them or the names freak you out because you never saw a "Bon Appetit" article on them? Great, more for us!

9. The 'opener' refers to the first day of deer season. It's a religious holiday held on the Monday after Thanksgiving.

10. We open doors for women. That is applied to all women, regardless of age.

11. No, there's no 'vegetarian special' on the menu. Order steak, or you can order the chef's salad and pick off the 2 pounds of ham & turkey.

12. When we fill out a table, there are three main dishes: meats (includes fish), vegetables, and breads. We use four spices: salt, pepper, hot sauce, and Heinz ketchup. Oh, yeah...we don't care what you folks in Jersey call that stuff you eat. It's not real chili.

13. You bring 'coke' into my house, it better be brown, wet and served over ice.

14. You bring 'Mary Jane' into my house, she better be cute, know how to shoot,and have long hair.

15. College and high school football are as important here as the Steelers and Eagles and a lot more fun to watch.

16. Yeah, we have golf courses. But don't hit the water hazards---it spooks the fish.

17. Colleges? We have them all over. We have state universities, community colleges, and vo-techs. They come outta' there with an education plus a love for God and Country. They still wave at everybody when they come home for the holidays.

18. We have a whole ton of folks who have been in the Army, Navy, Air Force, Marines and Coast Guard - PA has one of the highest percentages of veterans in the entire country. So don't mess with us. If you do, you will get whipped by the best.

19. Turn down that blasted car stereo! That thumpity-thump-thump stuff is not music anyway. We don't want to hear it anymore than we want to see your boxers. Refer back to # 3.

20. Four inches isn't a blizzard--it's a flurry. Drive like you got some sense, and don't take all our bread, milk and toilet paper from the grocery stores. You're not in Alaska. Worst case you may have to live a whole day without your croissants. The pickups with snow plows will have you out the next day.

A true Pennsylvanian will send this on to others. Everyone else can leave town.

I wanna talk about ME!

I wanna talk about me, wanna talk about I, wanna talk about number one oh my, me my, what I think, what I like, what I know, what I want, what I see. I like talking about you you you you usually, but occasionally, I wanna talk about ME! Thanks Toby!

Yesterday in my personal therapy session, I briefly recapped my therapist on the week with Sissy and that mostly, we're in a holding pattern until we get her back in RTC.  Things like Sissy went flipping nuts last night about making her bed - completely psycho - pounding the walls, kicking crap, psycho but hell, she's in a safe room now, so who the heck cares?  Let her rage about making her bed, what the hell ever.  That's how I feel about it today.

So my therapist said, "well, what if we talk about YOU today?" because yeah. The last 10 weeks of therapy have been all Sissy Sissy Sissy Sissy, good God almighty, my life is all about friggin' Sissy.

And I got giddy and said, "WELL!" and after three months, I finally got to tell her I'd gone gluten free, that I feel good - AMAZING, we discussed my family's history with obesity and how that impacts me and my thyroid disease and my self image.

We talked about my quilting and the quilt retreat i'm going on over my birthday weekend again because gosh, if it isn't easier to not be HERE when it's my birthday because Sissy will make it horrible.

We talked about WG and all the amazing things she does and says. We talked about how cool it is to have a "normal" kid and how she sang during church service on Sunday as part of Cantate singers and it was SO cool and it made my eyes water some because how cool is THAT?!

We talked about how some days I say in exasperation to AB, "Geez son, could you not be asperger's for just half a minute once?!" and then laughed because AB's response to my exasperated request is always, "Huh? Mom? That doesn't make sense. How can I be not me?" And I giggled about how the pretty candle lit on the table in the therapy room would drive him nuts, absolutely batty.

We talked about marriage and how traumatized children affect marriages and what are The Dad and I doing to keep our marriage healthy, as healthy as it can be despite the chaos and I told her how working together is probably the single best thing we could have ever done to preserve our relationship.

We talked about fall, my favorite season and my birthday on the 16th and how I'm on the downward slope toward 40 this year, hitting the 36 mark. We agreed that 40 feels good, just the thought of it makes me happy because then maybe I'll finally feel like I know a thing or two, and if not, I'll know enough to play it off like I do.

It was so much fun to talk about ME!

Don't do it, don't let your wango tangoes steal from you, your family, your joy. Don't let them be all you think about, talk about do, say, think, hear or breathe. There's a whole world out there of amazing people and some of them are still living in your house, enduring the hell with you. Resist the Wango Tango!
------------------------------------------------------

Things WG has said to me the past few weeks that make me want to tackle her with love:

"Mom. Just so you know, I pray every day that God will heal your body so you can eat gluten again."

To which I said, "But WG, I AM healthy BECAUSE I don't eat the gluten."

"But mom, what does gluten do to you anyway?"

"It makes me unable to POO!!!" and we laughed and laughed and she said, "Oh mom, you're SO funny"

or this one:
She was just sitting at the table, dreamily admiring the finished wall hanging quilt when she said with a sigh, "oh mom, it's just so BEAUTIFUL!"

or when I got my BP checked at the free BP meter at CVS:
"Ooo! WG, look, my BP is 122/82. That's GOOD!" and WG hugged my neck hard and said while jumping and clapping, "YAY MOMMY! You are doing so good getting healthy! Your heart is getting better! But mom, what about your butt? Cause it's still kinda big..." and she looked at me sideways in preparation for me to be mad about her remark but I just laughed because what are you going to do when the ENTIRE waiting area at CVS hears your 6 year old say that?!?

And then AB just makes me want to shout from the mountains, "I HAVE THE SINGLE BEST SON EVAH!" because I do.

He is lactose intolerant but really likes chocolate milk. So I sent him to school with a lunch box size chocolate silk milk. He told me yesterday the following conversation occurred at school:

"mom. this girl? She is wrong. She lies. And lying is against the law. And she is going to be arrested. She said silk milk is from cows. And I said no. Because it's from soy beans. Right mom? It's from soybeans? And she said I was wrong and I lied and I said no, because my mom used to teach science and math and she knows and you told me it's soy milk, from soy beans and I showed her on the box and everything and she still said I was wrong. But I'm not. She's wrong. right mom?"

I love my son!

AB and The Dad being silly in bed last night

They're not sleeping, they're being silly, pretending to be sleeping and trying very, very hard not to bust up laughing long enough for me to take the picture.

Charting the wango tango

on placement - waiting for the PRTF and have stalled out finding a suitable facility. All are 2-3 hours traveling distance and all require weekly family therapy visits. The Dad has requested I post the following question:

To those of you that have placed in the past or currently have children in RTC, what have you done about the required weekly therapy, especially since many of our RADlets don't gain anything from those sessions? In addition, what accommodations to these rules has your family been able to set up if your child is a distance from your home?

Still on the warpath to get Sissy an IEP. I'm really hoping we have this nailed down BEFORE placement. We know that the likely event will be that she will get approved for another short term placement and be sent home again while we try to find long term and without an IEP in place, that makes me very nervous. One of the plans at our last RTI meeting discussing Sissy's need for an IEP was that I would document her behaviors before and after school to see if there was a correlation between school day events and her rages at night. We had two key points of interest in this chart. One was to determine if Sissy's behaviors were better on the days she had small group with the school counselor. The objective was to prove that with appropriate supports in an academic environment, Sissy would do better overall, both at home and at school. The other point was to see if Sissy's behaviors on Sunday night and Monday morning demonstrated anxiety about the new school week.

Score! The charting demonstrates exactly that. Our hope as parent/educator team is to quantify the link between Sissy's wango tango and school. I can tell them all I want to that Sissy was excellent all summer, that it was the best time of her childhood to date, that we thought we were turning corners in her RADs, etc. but without proof, it can't be used in the documentation that will be submitted for an emergency IEP referral[1], especially since Sissy hits academic benchmarks regardless of her wango tango.

In addition, during a rare cognitive moment at group this past Thursday, Sissy admitted to the school counselor that she rages at home, is "very good at that, knows all about it and how to do it" but that she doesn't do it at school because "she would be embarrassed for everyone to see." And yes, Oh yes indeed, the school counselor documented the crap out of it. Finally! Sissy is admitting to the school professionals that she is one way at school and another at home. MONUMENTAL!

It's been very interesting to get an objective view of Sissy's behaviors and to observe a pattern, in particular because Sissy can not voice her anxieties for herself. She's still very sporadic, unpredictable and wobbly, curses to the wango tango! And if you're not already using it for your bipolar babies, I highly recommend moodchart dot org. It was the tool that garnered us a clear picture of Sissy's 15 day rage cycle.

To save post space and the eyes of readers that do not care to read through all the drivel that I charted, I will not put it all on here. However, if you email me directly, I will very gladly email the document so you can use it as a prototype for any charting you plan to do for your rager. Just click my profile page and on the left side bar, click the "email" link. In your subject heading, please put - "Sissy's chart" so I don't delete your email as spam.

Included in the chart was my definition of a "rage" I felt it was important to delineate what I perceived as a rage and how it affects Sissy and the rest of the family. Just sending off a chart to some PhD's desk with notations that said "rage" didn't give a clear picture. Here's how I define "rage" Sissy style:

We define a "rage" episode with Sissy as having one or more of the following attributes:

1. no clear reason for her anger/ no identifiable trigger

2. immediate onset, no chance to circumvent her anger with a time out, talking it through or using a coping skill

3. primal rage screaming

4. jumping, hitting self, punching, kicking, destruction of property, threatening others

5. flat out defiance - usually she screams in our face with a raised fist that she is "NEVER GOING TO DO IT!!!" (whatever we've asked her to do)

6. unwillingness to take a cool down or a coping skill

7. screaming that lasts for 5 minutes or longer

8. crisis team is called if she continues for longer than 30 minutes

9. usually after a rage we try to talk it through. 50% of the time Sissy cannot recall why she raged

10. 25% of the time after a rage, Sissy is physically exhausted and sleeps it off

11. 10% of the time after a rage, Sissy has a psychotic event - talking to voices, hearing or seeing things that aren't there, wetting or soiling herself, catatonic-like or overly silly behaviors, sexually acting out or odd seemingly cognitive moments in which she says off-putting things for the sake of unnerving the listener

When Sissy rages, there is very little we can do other than to wait it out. It disrupts not just her life, her social, emotional and academic time, but it disrupts the entire family socially, emotionally and academically. There is very little the rest of us can do without a respite provider to watch Sissy, because we can not predict her rages. This includes any innoccuous family activities like going to a park, riding bikes, playing in sporting events, going to the library, going to church, going to a movie, going to the grocery store or w.almart, going out to eat, etc. We are all prisoners to her emotional behavioral disability. It has cost us relationships with family and friends because they do not understand the severity of her needs and what we are required to do to keep her and others safe

It is my hope that despite the eventual plan for Sissy to return to placement, which we now really do feel certain is the best plan (there is a whole heck of a lot that happens IRL that isn't blogable), that if nothing else, our story, our plans and our strategies will net success for other families.

[1]"emergency" what a joke. It takes 3 weeks to get the documentation to prove it, then another meeting, then the referral sits on the PhD's desk in the board of ed office until she gets to it and either approves or vetoes it. THEN we call another meeting to determine IEP classification and what, how, who, where, when and why Sissy should be supported and if it can even be done at the school she currently attends. NO WHERE in those events do I register "emergency"

Praise God, my child has been healed!

After weeks of rage, a hospitalization, a second ER trip, her second most violent rage last Saturday, our announcement that she's going back to RTC, building a safe room and another full week of rages complete with sleeping in school during the subjects she doesn't like and her gen ed teacher saying "HOW can it be psychoses, she really was sound asleep" and me replying, "exactly, that IS psychoses - falling sound asleep in 2 seconds flat as a way to deflect"...

Sissy is now being spot on perfect.

And that's supposed to make me happy? 

Instead, I must admit, it makes me more exasperated.  Clearly she has the capacity to behave accordingly.  Clearly she chooses not to.  Clearly we are all on pins and needles waiting for her to decide it's time to be a royal pain again.

So I did what any reasonable woman would do under such dire circumstances.  I watched the foundation piecing video 501 blocks[1] recommended (It's HERE in case you're interested), I bought the add a quarter ruler, I picked up some steeply discounted + end of bolt neutral fabric for the back and binding of my Thanksgiving wall hanging quilt and I laid down more lines in my companion pillow sham.

Then hubby and I winterized the back yard and I raked.  I raked and raked and raked.  Darn pine straw.  Sissy watched.  She sat on the trampoline and told no one in particular all about what she was going to do when she played.  Finally, I said, "Sissy, stop TALKING about playing and do it."

"I AM!"

"You're playing?  You're sitting on your bottom on the trampoline."

"I'm playing with WG!" 

"Does WG know you think you're playing with her?"  WG was running laps around the yard, leaping over the various piles of raked pine straw.  "Hey WG, are you playing with Sissy?"

"HUH?  I'm a rottweiler and I'm doing a dog race.  I don't know what Sissy is doing."

Sissy's turn, "WHAT?!?  WG, we're PLAYING!  Remember?"

"Well Sissy, I'm running.  You can run with me, but I'm in a race and I have 5 more laps to do so I can win."

My turn, "So, you can run laps and play with WG or you can rake pine straw and work with me. Or you can sit on the trampoline and talk about how you're going to play."

Sissy got off the trampoline and began leaping over pine straw piles.

Praise God! My child has been healed!

[1] did you know that 501quilt blocks is watching the waters mom?

Foundation Piecing

I like to try new things and one of my personal mantras is that the day I stop learning will be the day I die.

So today I tried my hand out foundation piecing. I've decided to compose a letter to this quilting technique.

Dear Foundation Piecing Technique,

I tried it and must respectfully request that you go to *bleep*.

Sincerely,

Integrity

Suffice it to say, foundation piecing and I are not currently on speaking terms. We've put any thoughts of forging a new relationship on hiatus indefinitely.

Here is the product of this evening's attempt. You can see for yourself that neither foundation piecing nor I could come to a point we could both agree upon, we made no reasonable or consistent allowances for seams, our margins were out of sync and altogether it was a horrible, miserable flop.

I will however, give props to myself for excellent color choice.
Two points for Integrity.

But as a whole Foundation Piecing whipped my *bleep* with a rousing 24 points (two points for each piece)

Thanks but no thanks.