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

Thursday, September 30, 2010

it's THAT bad?

While we work on getting placement (which requires a PRFT from Sissy's core provider and then since she's SSI medicaid, we have to route all placement approvals through APS medicaid through the state, blah, blah, blah) we have requested weekend respites for Sissy at a therapeutic home/facility.

So I called a new provider in our area and began explaining Sissy's needs, her rages and her requirements for her safety during her rages and at night while she sleeps and the lady said, "uh... yeah. I'm not set up for that. I'm very concerned that your daughter could be hurt in my care because I'm just not prepared for that level of care..."

Which made me say HUH? HOW is it that me, an ordinary parent, is more equipped for Sissy's needs than the "trained" therapeutic professional?

And I didn't laugh (but it was hard not to) when she said, "well, I read about RADs in one of the training sessions we did."

OK, now I'm laughing. ROFLMAO! WHAT?!? She READ about it?!? And she's a "trained" and certified therapeutic respite provider!?!?

ROFLMAO BWAHAHAHAHAHAHAHA!!!!!!!!!!!!!!!!!

wait, wait! *pausing to catch my breath from all the laughing* She also said, *snort* that she really only worked with ADHD kids ....

*slapping knee and howling*

Gosh, my sides hurt. Really? REALLY!?! WTH!? ADHD?!?

HOW did it get THIS bad? HOW is it that I know more than the trained, certified professionals that are supposed to know how to care for kids like Sissy? HOW is it that I will likely have to transport Sissy to a different city in my state to get weekend respite providers because there are none here and then it hit me ...

hey, I have a safe room now. Maybe I should provide therapeutic respite placement...

geez.

Is it really THAT bad with Sissy?
It must be.
But who knew? I just live this life with her every day and never really give it a thought because you do what you have to do for your kids because who the heck else will? No one, apparently.

Hope you enjoyed the laugh today, I sure did!

Tuesday, September 28, 2010

She goes a raging but ...

... but we can't hear a blazin' thing!

Her safe room is complete. It's actually really cute and cozy (and I've already taken a few minutes of respite in there myself.) It's very quiet in there which means, it's virtually noise free for us when she rages.

And how would I know that? Because the foam was on the wall for four hours and she was already taking the opportunity to rage until she was hoarse but WG, AB and I had to put our ears to the walls to hear anything.

Ah, bliss. Letting Sissy rage, knowing she's safe and we don't have to lose our minds while she screams it out.

OK, therapeutically speaking, here's the philosophy behind the safe room (for those that are curious):

After a full year of DBTs and coping skills to attempt to circumvent Sissy's rage, we still haven't been able to label the triggers or stop her rage before it goes to fight/flight. And we all know, once the limbic system gets involved, all bets are off.

At last week's CBAY meeting, I made the proposal that we take a CBT approach. Instead of telling Sissy to stop her rage, we GIVE HER PERMISSION to rage but we make it safe (and pain free for the rest of us). The objective is to let Sissy learn for herself that her rages accomplish nothing and hopefully, stop doing them altogether. (we can hope, we can hope). Also, with proof that a virtually vacant space with little visual clutter and few personal items to keep track of in RTC and on the psych floor, Sissy did well. Less IS more. It's hard to make that choice for our kids because we want them to have, have, have, have but stop that nonsense. Less is more. (besides, it's just more crap for them to destroy or chuck at us)

Thus, with four therapists (some of which have worked in institutions) in agreement and giving us a nod of approval, we requested waiver money to help with expenses and got to work.

We walled in her curtained space click here for the photo of her room right after discharge from RTC, put on a door and lined the walls with 3/8" foam from wesellmats

The walls are 3/8" construction grade plywood, not sheet rock because you can put a fist through sheet rock. The exterior walls are high grade panel board so it looks "nice". We put in a prehung 2.0 door, a remnant carpet, and removed all wooden furniture. Her mattress is on the floor with lots of throw pillows and fluffy blankets and her dresser is a plastic chest of drawers.

The finished room size is 6x7, more than ample space for privacy, sleeping, raging and chilling.[1]

She has access to her personal items but they are not in her room, save but one small bin of items that can be swapped out.

I tried punching the walls with my arms and my fists, kicking it and running my body against it. The foam is sufficient padding to prevent bruising and broken bones.

And of course, Sissy gave the royal scream fest a try and ... virtual silence for us!

Bliss. Pure bliss. Sissy can rage it out and I don't have to worry about her safety or the screaming retribution of the siblings that have to listen to her!

right, and you're probably asking "yeah, but how do you keep her IN it?" because locking a child in a room is illegal. We have the motion sensor in the living room for her sleep walking and to prevent her waking wandering at 4 am. As soon as she opens the door, the angle of the motion sensor will pick up the movement and it will go off. Besides, once she's in full rage, she usually stays stationary so that's never been a huge issue for us. Before resperidal, she'd wander and rage and get in our faces while jumping and flailing. SCARY!

[edit] there are no windows, no glass, no mirrors (the "mirror" in the third photo is just reflective plastic), no ropes, no nail clippers, no scissors, no long strings, no CDs, nothing she could hurt herself with. See also the list of contraband items you get when you put your child in RTC or on a psych ward. You wouldn't believe what these kids can hurt themselves with! And yes, random bed checks every week. I love her but I don't trust her. Her pillow case is always the first place my hand dives for contraband. And I've been known to remove her mattress and dump drawers looking for contraband, and never with a warning. Just "bed check!" and I go.

It's unconventional but I highly recommend it. Here's some photos so you can see for yourself how cute it is. Sissy picked the pepto bismol pink foam so it's a little nauseating to look at but hey, she likes pink.





and one of WG who wanted my readers to see how much she likes bugs and creepy critters and animals and mostly "that she really wishes she was a boy. Really!"



[1]Logistics:
The walls are screwed into the crown molding and base boards, not bolted to the ceiling and floor. The existing two walls were covered in plywood as well so we could glue the foam to the plywood and not the existing wall. There was already an outlet on the flanking wall so we put in a hanging lamp, suspended from a planter hook in the ceiling. Circulation does not seem to be an issue, the temperature of the room is moderate and the space is large enough for a standing, oscillating fan. Foam was glued to the plywood walls with sub flooring adhesive. READ: no structural changes to our home and it can be torn down and removed with little effort and minimal repair work with wood putty to the molding and base board.

Cost: $160 for materials, $60 for the prehung door, $147 for the mats, $20 for a 6x7 bound remnant, 10 hours labor, all other furnishings were already available in our home

If I didn't love her

Because a commenter seems to think I don't like Sissy as much as my other children, that I have plans to achieve my "dream family."


If I didn't love her, I wouldn't want to die for her so that she might be well.

If I didn't love her, I wouldn't cry so many tears about my inability to help her.

If I didn't love her, i wouldn't have pined for her for 20 months.

If I didn't love her, I wouldn't have let her physically assault me without assaulting her back.

If I didn't love her, I wouldn't alter my lifestyle to accommodate her needs.

If I didn't love her, she wouldn't have strict routines, ALL.YEAR.LONG.

If I didn't love her, I wouldn't gauge an outing based on whether or not it will become a trigger for her.

If I didn't love her, I wouldn't defend her.

If I didn't love her, I would have given up long ago when the school said she didn't need an IEP. In her sixth year of public education and STILL I try.

If I didn't love her, I wouldn't censure what she reads and watches on TV.

If I didn't love her, I wouldn't spend so many, many hours in therapy with her.

If I didn't love her, I wouldn't go out of my way to remember the things she likes, and provide those things for her.

If I didn't love her, I wouldn't discipline her.

If I didn't love her, I wouldn't show her the love of Christ every.single.day.

If I didn't love her, my first thought every morning wouldn't be "Dear Lord, help me have your mercies for Sissy this day as you renew your mercies for me today."

If I didn't love her I wouldn't know her favorite color, animal, song, movie, food, activity, beverage, store, clothing, blanket, stuffed toy, or TV show better than she knows it herself.

If I didn't love her, it wouldn't be so hard to make a placement when she needs one.

If I didn't love her, every waking thought of my day wouldn't be consumed with her.

If I didn't love her, every prayer wouldn't be about her.

If I didn't love her, the tears I've cried over the years wouldn't fill the great lakes 10 times over.

If I didn't love her, my therapist wouldn't be telling me that I'm putting myself, my other children and my marriage in jeopardy by investing all of myself in her and her alone.

If I didn't love her, making a safe room for her and stripping it down so she can't hurt herself, wouldn't make me cry.

If I didn't love her, I wouldn't have quit my 13 year teaching career so I could live just above the poverty level all so i could make sure I was available to her when she was suicidal.

If I didn't love her, I wouldn't physically restrain her when she needed it.

If I didn't love her, I would have thrown in the towel when she was three.

If I didn't love her, I wouldn't have spent four years in ongoing therapy sessions with various different agencies and therapy startegies to learn how to help her.

If I didn't love her, I would have spent all of her social security back pay on myself instead of investing half of it in her safe room and the other half on unpaid bills because I quit my career to live at the poverty level so I could be available to Sissy.

If I didn't love her, I wouldn't have read volumes of texts and listened to hours of teaching tapes so i could learn how to help her.

If I didn't love her, it wouldn't have cost me relationships with family and friends because they don't understand what we have to do for her safety and well-being ... and likely never will.

If I didn't love her, I wouldn't have 225 blogspot posts in 10 months time and five years of journal entries on livejournal all about her.

If I didn't love her I'd treat her the way she treats me.

If I didn't love her, it wouldn't break my heart that she is unable to love me.

Because if I didn't love her, I wouldn't care.



If getting Sissy a long term placement is the best thing for her, then because I love her, I will do it. But because I love her, my heart will have a hole where she belongs... forever.

And if that's not love, if that's the heart of a woman that prefers her other children over her and is seeking a "dream family", then I haven't got the slightest clue what love is and deserve to be shot in the head because I'm a hopeless, worthless human.

Anyone ELSE want to judge me? Before you do, come wipe the tears that keep rolling down my face every time I think about her. Come love her as much as I do, and then we'll talk.

Sunday, September 26, 2010

A provocative question

So... I'm going to stir up the pot a little and ask a provocative question.

Emotionally I'm at a place where I find myself saying HOW can these children be helped? CAN they be helped? At what point is it medically unethical for the system to continue to place children like this in home environments at the welfare and safety of everyone else in a home?

But there don't seem to be answers. It seems to be hit and miss and I think it also comes down to which families have the stuffing to put up with these behaviors from their children.

I, for one, am not one of those tolerant moms. I've learned that truth the past few weeks and that makes me sad too. So many of the moms I'm following on blogspot have put up with behaviors like this from one or more children for much longer than 10 years and either you are superhuman or you have been unwilling to make the hard choices.

I'm not sure which it is and it seems rude and improper to ask these blunt questions but I'm going to.

Are you superhuman...
or unwilling to make the hard choice to relinquish children to placements when they need it? When the safety and welfare of the rest of your healthy family, yourself and your marriage demand it?

I'm not accusing, just asking. Because I'm having a hard time wrapping my head around the fact that either I'm a crappy woman that can't handle my kid, the whole lot of you are as insane as your kids, you have truths and successes you're withholding like Sissy holds her poo or your families are suffering and you don't recognize it.

For the record, I don't think I'm a sorry excuse of a woman that simply isn't willing to handle her kid. And honestly? I don't think personal homes were intended to be set up as institutions.

And yeah, I'm angry and no it's not directed at any of my readers but good God Almighty, it's a bitter pill to swallow when you're faced with the glaringly obvious truth that you are insufficient to help your child no matter what you do, that to continue to try is at the detriment of every other family member and your own well-being. And that's not just yesterday's panic attack talking. That's being honest because seriously, someone has to state the truth and it sure as heck isn't going to be Sissy.

I'll leave anonymous posting on as long as it doesn't become a mad lynching. I'm not in the mood to be strung up in martyrdom today.

Saturday, September 25, 2010

The process begins again

Pdoc finally called yesterday afternoon. He'd been out of office due to a family death. Time for a placement again, he said. Even if it's something temporary while we look for long term. If we're worried about our safety in the here and now, call DFACS for a therapeutic foster placement. If we have to go to the ER again, insist that they admit because we refuse to take her home (even though we'll face an abandonment charge). It's not meds, it's choice.

He gave us a list of hospitals and RTCs to call but now we've hit a new road bump. Sissy is no longer state medicaid, she's federal medicaid. And some of our state facilities aren't sure they'll be able to work with federal.

In the meantime, we've made her room permanent without causing structural change to the house. The kids' biogranddad is a contractor and master carpenter. So we used some of the backpay from medicaid and had him wall in her 6x7 space. We ordered foam blocks to cover the walls so when she's hitting and kicking she won't get hurt. The door arrives Monday. It takes up a huge space in the living room but it's her own "room" and it's safe and moderately sound proof. In other words, we're giving her permission to have her rages, we'll know she's safe and it will be relatively noiseless for the rest of us.

Sound is a huge issue for AB - typical of asperger's, he is intolerant of loud noises and since you can hear Sissy's rages a house away with all the doors and windows closed, I can't blame him.

AB and WG are angry, angry, angry. And borderline spiteful to Sissy. I can't blame them that either.

So between the CBAY meeting on Thursday that lasted two hours as four professionals and two adults tried to map out a better therapy plan[1] for Sissy, Papa's carpentry work yesterday and the whopping migraine from some rogue gluten I consumed (curses!) the last two days have been a huge blur that culminated in Sissy raging at me in the ten minutes The Dad left to pick up pizza. The trigger? She was gloomy so I suggested she read the positive comments that we've written about her in the family comment box. Shame on me for suggesting she do something positive.

Being screamed at because you've dared to help another human? Not fun.

Then when i asked her to identify why she had such a strong reaction to reading positive comments about herself, she ignored me even though an answer would have netted her TV time with the family. Then ten minutes later nonchalantly said, "I forgot. What was the question again?" I tell you honestly, she did NOT forget the question, in true RAD fashion, she was trying to bait me again.

Can I just say I'm tired of crying about Sissy?

[1] some of you previously requested to read what the plan was that we came up with. I'll post that later.

Friday, September 24, 2010

AB and the school fundraiser

Usually, when it's school fundraiser time, I wince. There's always the big assembly in which some sales guy from the company the school has chosen drums up the product, spices it with gobs of hype and then makes the kids salivate with the potential prizes they'll win if they sell copious amounts.

All AB and Sissy get out of it is Holy Crap! I'm gonna win a bunch of stuff!

One year AB thought HE had to buy the stuff to win the prizes.

Another year Sissy thought selling 150 items was no big deal and she was prepared to tell me to just go ahead and do it then.

But this year is the best misinterpretation yet. Yesterday AB came home from school and proceeded to take new trash bags and fill them up with his personal items. I thought he was just purging unwanted things. Until he told me he wanted to sell them. At recess. For money.

Not wanting a fight, I told him we'd talk about it later. So this morning The Dad says, "what's with the bags of toys in the hall?"? And AB began to explain, "Some kid told me I could sell it and then spin the wheel and I might win $200."

At which point I had to stifle a giggle and The Dad was more bewildered than before. So I attempted to explain without laughing. "It's the school fundraiser, Dad. If the children sell the cookie dough and wrapping paper, one of the prizes is a chance to spin the prize wheel to receive an award. The best prize is $200."

The Dad's turn to look away so he didn't laugh.

AB was still confused so we said we'd talk about it more after school. As AB cleared his breakfast things he said, "mom, so... I should sell COOKIES?"

Thursday, September 23, 2010

I did it!

I DID IT!

I finished the hand quilting on the wall hanging and put on the border. It's only pinned but I was too excited to show off the finished project to wait for nuances like tacking down the binding, washing, pressing and properly hanging it. Every stitch done by hand thus, this shall be called my:
how-to-bypass-the-need-for-anti-depressants-AKA-the-quilt-in-which-I-perfected-my-rocking-stitch
According to Bren, the rocking stitch does some cool sensory and soothing things in the brain/limbic system. And yes, yes it does!


And for more cuteness, I have a doll from my infancy that is named after my first childhood friend. I loved the name so much, I chose it for WG's first name. And low and behold, when I opened the packet of this year's school pictures, WG looks like my doll who bears the same name down to the freckles on the noses! Even WG was astonished by the resemblance.

And I can't post a school photo of WG without posting AB and Sissy. Here you have AB's standard photo expression. I think he looks exactly like this in every photo we have taken for the last four years.


 And Sissy's picture... is it bad if I look at this photo and think, oh dear, she's got a whole lot of mess going on? Because gosh, does she ever. This photo is two weeks before hospitalization. Maybe I should just start taking photos of her when she's raging so I can see it this clearly and tell the docs, "HEY, I've got photo proof, Sissy's on the edge again!"


And for anyone who thinks for even a smidge of a second that I was way off base for calling Sissy on her running away attempt last Monday, here's photo proof of the contents of the packed and hidden backpack.

Seriously, what would YOU think if you found these items in your 10 year old's bag? All together now,
She's planning on running away!
And so there's no confusion, the contents of the bag included:
comb, toothbrush, toothpaste, deodorant, compact mirror, flip flops, purse (filled with hygiene items - which is blissfully ironic since she NEVER practices her hygiene without 10 prompts and a rage fest), sunglasses, a bug catcher (we watch a lot of survivorman and he's always catching bugs to eat) and a toy including all of that doll's accoutrement.

But Sissy maintains her story that she simply "didn't feel like putting her things away correctly"

Sure Sissy, and I'm really a black woman wearing white makeup

lol

If I actually said those words to Sissy, she'd say with astonishment, "you ARE?!"

Tuesday, September 21, 2010

The root of all that ills




Richard Edward Skrobisz, Easter 1986
May 28,1945 - September 21,1986


In January 1986, the shuttle Challenger exploded 30 seconds after launch.  The deaths of the 7 on board, one of whom was a nationally selected public school science teacher, were viewed instantly on live television.  I remember it well because the flag flew at half mast for seven days, one day for each of the astronauts and I could see that forlorn flag from the hospital window, the view from my father's room.

I don't recall how many times I saw that half mast flag from the hospital window because I probably only went to the hospital to see my father when it was possible.  But I do remember the poignancy of the event occurring when my father was fighting for his own life.  It was like that flag was being flown for our family.  I also remember that I couldn't escape the grief because my sixth grade science teacher had been one of the early selections to ride on the Challenger and he struggled openly with his own mortality.

That winter, my father battled the physical consequences of leukemia for more than 100 days before he was released.  Until recently, it had been the longest winter of my life and his discharge from the hospital still leaves me shaken.  I had not understood much about the progression of my father's illness and the medical procedures necessary to attempt to extend his life.  I knew only that leukemia was terminal, regardless of interventions.  So in the gloom and depression of my own emotional state, wondering when I'd be told that my father had died, I spent my days in a sixth grade classroom with a teacher that suffered his own melancholy from the reality that he was spared his own death. 

On a day in March, the secretary came over the PA in the classroom.  "Mr. S, please send Integrity to the principal's office immediately.  She's going home."  Mr. S looked at me and I looked at him and I thought I would pass out right at my desk.  He didn't have words of comfort for me because he did not know what waited for me at the principal's office, he only knew that my father had been very ill.  By an act of God, I gathered my things and made the walk back to the front office, fully anticipating to be told that my father had died.  As I walked I told myself, it'll be ok to cry but don't break down here, wait until you get home to your bed.  you knew this was coming.  just be brave, you can do this.

When I got to the office, there, in front of the building was my parents vehicle, with both of my parents in it.  My father had been sent home, his leukemia was in remission.

The remission lasted the summer and by August he was given six weeks.  At least, that's my memory of the events.  We had fun that summer, bittersweet, but fun.  And as school began again that September, I was in middle school, in a new building meeting new teachers and making new friends but I was once again thrown into crisis and chaos.  He died 24 years ago today.

The irony of my life is palpable.  This past winter Sissy spent 100 days in a hospital.  She was discharged in March under similar emotionally challenging circumstances.  We felt she had not gotten better and believed an ill child had been returned to our care.  Then this summer we had fun, we thought Sissy was gettting better, in deed, I'd told the pdoc in July that this was the best she had been, ever.  I even wrote in one of my summer posts that I wondered if the emotional rollercoaster we were on with Sissy was similar to the feelings of parents whose children were in remission: when will this fun end?  Because mental health professionals won't ever say it to our faces, but with the exception of a small population, usually a RAD diagnosis is terminal, especially is sexual abuse is a factor in the equation.

Now it is September 21st, the anniversary of my father's death and Sissy is emotionally fragile.  Last year on the 23rd she said she wanted to end her life.  This year I'm anticipating those same words to come out of her mouth any day.  I'm reliving the same grief and despair all over again with one exception.  Cancer is literally terminal, eventually after a loved one passes, the trauma fades and only happy memories remain.  RADs is emotionally terminal.  The scars continue without end, making it harder to cling to the happy memories or worse, making the happy memories only bitter ones because the rages and violence always come back and you feel duped for ever daring to have fun and be carefree.  Today we wait for the pdoc to call so we can discuss the need for another placement. It sounds like that would be a good plan for Sissy at this point but all I can think is but they'll send her home and we'll do this all again...and again...and again.  I'm not sure which agony is worse.


The weekend before Sissy was admitted to the psych ward, I had several dreams.  All of them included me drowning.  In one dream, I watched a mother push her caged, pre-adolescent daughter over a rocky cliff into the ocean so she could wait for the tide to rise and drown her. I tried to help her but she said to me as the waves crashed over her face again and again, "you're a mother and I don't want your help. MY mother did this to me.  Mothers can't be trusted."  In another dream a woman was trapped in her vehicle that she wrecked in a reserve pond.  It was too swampy and murky for me to get to her so I had to leave her, hearing her screams and cries for help.  "I'm a mother!  Think of my children! Help me for THEM!"  It's obvious that I was playing out my unresolved emotions, that I feel like Sissy's needs surpass what I can do for her, that her needs are drowning me and putting my other children in peril, that I'm a mother that Sissy feels she can't trust.

The third dream, however, speaks to me the most.  I had purchased seven round bails of hay.  You've seen them, those giant round rolls that sit in fields to dry out and then are sold as feed for cattle and horses.  My intent was to deliver the hay to the farm where AB has hippotherapy.  It's a small town and easily navigated but still, I lost my way.  I kept calling the farm owner to say I'd be there soon but that I kept getting lost.  I would get out a map and try to redirect myself, I called The Dad for help, I got out of my truck and started walking, asking for help from any human I saw, including from a church (that was full of crazy looneys that all told me they were bipolar).  I woke up, still lost, my seven bails of hay undelivered.

The next morning I looked up the dream symbol of hay.  It represents the maternal instinct to nurture.  My dream has said that which I could not.  I have an abundance of maternal instinct to nurture, seven bails of hay worth.  But even though I'm in a small, familiar town I know very well, I still got lost.  In other words, I have what any mother has for their child, in spades but with Sissy, I get lost.  I don't know how to get to her, I can't deliver it.  Point of fact, I didn't "deliver" her and that's the root of all her ills.

For the love of a child, for the want of healing, for the hope that God might intervene, for the emotional urging that this trauma stop, that we might finally come to an end and a resolution, for the grief that my desires will likely never be a reality, for the understanding that no matter what we do, life will be pain, for all of the unspoken emotions, dreams, and desires for our traumatized children, we pray. ~Amen

Monday, September 20, 2010

Round Two *DING!*

At discharge on Friday, the psych nurse said that if Sissy returned to her dangerous behaviors that we should bring her back. Here's the time line of events:

Friday night she told us she was afraid she would hurt someone. We sent her to bed so she could sleep it off.

Saturday she was disregulated all day. I called it "poking." She would ask questions or say things deliberately to get a negative response. I had a chat and said "stop poking. If you know the answer to your question already and you know that answer will make you mad, then don't ask it. You're poking us. You're trying to make us mad when YOU'RE the one that's mad, not me."

I also had her repeat this phrase many times, "mom and dad aren't trying to make me mad. They are doing what's best for me."

It didn't help. She was off and on raging and provoking all day.

Sunday morning we informed her that she would not be attending church. (backstory - they changed the sunday school format and we were concerned about how she would do in that new format so initially we told her she would just sit in grown-up sunday school with us. But The Dad woke up ill so we just opted to let her stay home with him)

RAGE. She was livid. Called the crisis team. On call guy said that if she was that disregulated after discharge, she didn't get the medical care she needed while in the hospital and needed to go back. Call 911 and have her readmitted.

So we did. And Sissy got aggressive with the officer. And we rode in the ambulance (i was with her this time so no chatty cathy manipulation) and we sat in the ER for hours and hours and hours.

From the time of the call to the time of discharge, 8 hours wasted. Attending psychiatrist said she did not meet the criteria for placement and furthermore, they did not have anything to medically treat while she was with them last week. So they sent her home.

An hour after discharge she was raging again because I told her to shower when she wanted a bubble bath. At the approval of her therapist (who we called... again) I gave Sissy a benadryl and sent her to bed.[1]

O.o

For the record, I did EXACTLY as I was told by professionals guiding her care. I got a big fat goose egg.

IEP meeting this morning at 8 am - we must assess to prove she needs an IEP. We have to quantitatively document that she needs extra support BECAUSE with the exception of her classroom math grade (66%), Sissy scores above standard on all her benchmarks. READ: she does not demonstrate an academic need for an IEP. So we have to prove that she needs an IEP for social, emotional and behavioral.

AGAIN, for the record, I have done EXACTLY as I was told by the professionals guiding her academics. I got a big fat goose egg. If we can't prove that her social, emotional and behavioral issues impede her ability to learn, we get nothing.

And WHEN I slept last night, i dreamt that Sissy was trying to kill us. [2] All.Night.Long.

THIS is how mothers snap.
THIS is how families get killed and burned by one raging family member.
THIS is what generates all of those "riveting" stories for lifetime movie network.

God in heaven, I do NOT want to be a lifetime movie special. Or dead. Or both.

How many times does a ram butt his head before he suffers brain damage and dies?

[1]on medication: it was asked several times by several different professionals yesterday if Sissy was dosing her meds, was I CERTAIN she was ingesting them. Answer: I ALWAYS supervise her medicating. I had already thought of that and asked her point blank. I know when Sissy's lying. She wasn't lying when she told me that yes, she takes her meds. Then i asked her another three times. And made her prove it to me last night and this morning. Yes. She's taking her meds.

[2]I had a dream I'll be sharing tomorrow. But it's interesting to note that Sissy reported dreaming that she'd been eaten by an anaconda - said she woke up before she died her dream. I like to research dream symbols. Snakes in jungian psychology represent "dark, incomprehensible and mysterious aspects of the self that must be confronted." (that and withholding one's bowels in Jungian psychology means "pent up rage") Uh, DUH! Sissy is quite literally being swallowed by her self conscious thoughts that she refuses to confront because she is holding in all her rage. Geez. The psychology of it is quite clear. Now how do we FIX it?

Saturday, September 18, 2010

Free books!

HOLY COW, you guys are awesome.  Thank you SO much for the vindication. As Meg alluded too, yes, I still suffer guilt about Sissy in the sense that I desperately want a successful life for her but if I've learned nothing the past few years, Sissy is walking further away from health rather than toward it.  How my heart aches!  Any other child riding in an ambulance to the hospital and the books from the EMS guy would have been a generous gesture of human compassion and kindness.  Instead, it becomes one more blow of truth that Sissy and the children like her, discombobulate and radically alter reality for those who live with them.  In our case, the reality is that a gift like this is under false pretenses and will only drive her illness. 

We will not give her the books. I will probably just donate them to the library or school. I won't even tell her about them. As Bren pointed out, by Sissy realizing she never got the books, she'll learn her manipulation didn't work and all without my intervention. So much the better! [1]

This scenario does point out a glaringly obvious truth, however. Last year when the cops and EMS showed up, they pinky swore with her that she'd not rage again and just obey and flat out told me that in no way did her behaviors stem from the abuse in her infancy. (Ironically, I had all of the RAD books splayed out on the kitchen table that they stood next to.) And of course, guy smiley from Monday was equally ignorant.

I was so angry last year about the unprofessional nature of the deputy and EMS team that I didn't bother writing a complaint. I would have come across as a raving lunatic and been dismissed. But at this point, they are batting 100% for ignorance about how to manage an emotionally and behaviorally disturbed patient in a 911 call. It begs the question, since I'm regulated in my emotion about it, do I write a letter now with the offer of coming to educate? Because seriously, they need some education on this! How many of you have thought these thoughts? Am I still doing Pollyanna? It must be the natural educator in me. Still, I think I'm going to do it, you know, in all my spare time.

And yes, in case you wondered, Sissy has already reverted to her crap and she's not been home a full day. The hospital said, "just bring her back." I just wish that didn't mean another 9 hours on my butt in the ER because wow, my hemorhoids are still not better from Monday.

[1] On the outset, I particularly like Corey's idea about a blogger give away but the S&H on these books ... I mean honestly. Have you SEEN the size of book 7?!? That said, if YOU want the books and are willing to go halvsies on S&H, I'm up for it.

Friday, September 17, 2010

Taking a Poll from my readers

Sissy was charming, adorable and sweet on the ride to the hospital with the ambulance staff. She chatted them all up and they laughed and giggled the whole way to the hospital. I know because she was sure to tell me all about it when i got there. The first thing she told me was that the EMS guy said he would give her all of his Harry Potter books, all seven of them, because he was moving and was getting rid of things. In fact, this was just about the first thing she told me the very instant I arrived ... and I was still several feet away from her bed and just barely within hearing range.

yeah, because when I'M in emergency and waiting to see the people I love, that's the first thing on my mind, books. Just so dissociated. ANYWAY.

Yesterday the EMS guy showed up at the house with all seven books. Just like all newbies to psychoses and severe mental health, he was all sad and gloomy for Sissy that she was going through this.

Now, on the outside, sure, i can see that point of view. It IS sad that she was abused. It IS horrible that she has so many organic issues. But living this hell? Knowing she makes these choices? Knowing she's a hoarder that doesn't put anything away correctly and now that's seven books to clutter up her space that I just stripped down as a consequence for her behaviors? Listening to a pathological liar all day long? Despising that she can be kind and obedient for EVERYONE but her family? Hearing her say"well mom, you got what you wanted, I'll be out of your hair for a few days and you won't have to listen to me scream at least for those few days while I'm here." I just want to burn the books, burn them in a colossal bonfire.

And I really wanted to "clue in" the EMS guy, but he was just so nice, damnit.

SO

Since I'll admit that my judgment is wrapped up in my worry and anger, i'm taking a poll. Anonymous commenting has been turned on.

Should I let Sissy have the books?
For those of you that have lived through similar circumstances, I'm particularly interested in whether or not something like a gifting of books made a difference in escalating continued defiance and rage.

Thursday, September 16, 2010

Can we love too much?

Social Security disability benefits [1] for Sissy begin on the first of the month.  Back pay will be automatically deposited in 3-5 business days.  Curious thing, the primary diagnosis that deemed her medically disable was PDD-NOS, the diagnosis I thought was bogus.  Well, I'm going to be tight-lipped about it now.  Secondary diagnosis was ADHD.  Wow.  I mean, hello?  With all the other diagnoses, it came down to just those two?  So strange.  I know people with children more significantly impaired than Sissy and AB who still have not been declared medically disabled.

On Monday, AB's psychiatry appointment deemed him PDD-NOS instead of Asperger's for the purpose of his claim.  AB is already ADHD.  He's in appeal for social security disability.  The representative I spoke with today said that based on that  diagnosis, he'll likely be deemed medically disabled too.  And get back pay and benefits. She crunched the numbers and with both of them on disability, we will get the maximum amount for both of them, monthly.

The poor lady didn't know what to do with me when I sat there and bawled. Bawled like a baby. This will significantly improve our quality of life. It completely replaces the income I was earning as a part time educator. And... i'm crying again.

Of course, all of that hinges on whether or not Sissy stays at home. The pdoc and I spoke last night and his initial impression is that if after 6 months of intensive home therapy after intensive therapeutic care at RTC Sissy still rages only for us, it's choice AND she won't stop. Therefore, it is necessary to discuss placement in another type of facility. He gave me the name of one such facility in our state and I contacted them at the pdoc's bidding. Their reply was that they are a basic care facility only and it would be an improper placement for Sissy.

However, with a significant increase in income, we could consider purchasing a larger home, one in which we could set up Sissy's room for isolation and safety when she rages. Currently, rages in the living room does NOT work. And it sets off AB. There is no peaceful place in our home. There is no adequate place for her to rage without annoying the rest of us.

It's a lot to think about. CBAY and the IFI team will be working together next week to help me rethink an entirely different therapeutic plan for Sissy. All of them can not believe she has snowed us all for this long (she's got some pretty jacked up sexual ideations that she's been talking about since Monday, things she's kept hidden.) Regardless of any future long term placement plans, for now, Sissy will come back home.

But what boggles my mind the most is how immediate the change was in our home after she left. Right now, AB and WG are playing TOGETHER, outside. No one is angry, no one is shouting, homework was done painlessly followed by art/craft time. AB, on his own volition, finished his science project and i feel like my head is clear, as clear as today's gorgeous blue sky. It's astonishing. Even more so, AB had a rare cognitive moment while painting his model boat. "Mom. What about Sissy? What are they going to do? She cant' keep screaming at us. I hate it. Can't they just send her back to RTC? I don't understand. Why is she coming home? She lies too much."

Which was followed by WG, "Yeah. All she's going to do is scream again. And you know we can't stand it. Mom. Just tell the doctors that, ok? She's going to scream and she won't stop. She needs to be in a hospital. I don't want her to come home."

And AB said, "Well, if she got better and stayed better, she could come home. i want that."

And WG again, "Yeah, but AB, you know that won't happen."

"Yeah. i know. Still. I wish she could stop lying so she could stay home."

O.o
OK. These kinds of conversations between AB and WG NEVER happen. And furthermore, they never talk this coherently about adult topics even when I bring up the subject. Which says VOLUMES about them and how much Sissy's trauma impacts our life.

It's 3:36 pm on an early release day. All homework is done with no drama. AB and WG even did a little extra to get caught up. We've had craft time and outdoor play time. I've done laundry, dishes, general housekeeping, checked email, called doctors, WG has let AB borrow one of her toy snakes for his rain forest diorama, we've played with the dog and had a really nice afternoon for the first time in 7 months. I have two amazing children and a beautiful life with them. I can not believe I let it get that bad with Sissy.

Sometimes, I think we can love TOO much.

[1] disability benefits is a need-based program. We qualified for the maximum for Sissy because of the income/expense ratio. In other words, we just barely break even every month and when big expenses come up (like our new AC unit) we have to borrow from family or get non-profit assistance because we simply don't have the cash. Oh, and we have ZERO assets and ZERO savings, benefits or pension. To be frank, we're broke.

Wednesday, September 15, 2010

peace with a pain chaser

Listen. Do you hear that? Neither do I. No one is screaming at me.

It's amazing how much you get used to. It's overwhelming, when she's not here, to recognize just how much trauma she adds to the home. And it's agonizing because I can enjoy the quiet for a few days... but I know it'll only last that long because they'll send her back. And I get to go back to hell again. I'm not sure which is worse. Living in hell and not knowing it or living in heaven for a few days knowing that there's nothing you can do to prevent yourself from returning to hell.

I think I'm going to tell the staff at her family meeting before discharge on Friday, "do ya'll like your lives? Do you feel you have quality of life? Do you enjoy your weekends and time to yourself? Because I don't. I have no peace. I have no quality of life. Neither do my husband and two younger children. And you're telling me Sissy gets to come home and I get to do everything TRAINED PROFESSIONALS do but I'm not "trained" And then you're telling me I have to do it 24/7, without breaks, without compensation, benefits or a 401K. You're telling me I have to do everything you do, exactly as you do it. you're telling me I have no choice, that she's my kid. You're telling me you have quality of life working in mental health profession, in a JOB, that you could RESIGN FROM and I'm telling you, I'M NOT A MENTAL HEALTH PROFESSIONAL BUT I CAN NEVER RESIGN."

think my hot air will be worth it?

I don't either.

THIS IS SO NOT FRIGGIN' FAIR! I'm living a nightmare I'll never wake up from. AND WHAT ABOUT MY OTHER CHILDREN?!?!?!?!?
SOMEONE HAS TO START TO LISTEN!!!!!!!!!!

and that's all I'm going to allow myself to think of it today. I need to keep my zen until Friday afternoon. It may be the only zen time I get for quite some time. Welcome to my hell.

Tuesday, September 14, 2010

quiet

9 North called. Sissy is being a perfect little angel.

but my house is quiet.
except for the ringing phone, texts, emails ...

and social security called - she's being deemed medically disabled

and we finally, FINALLY have an emergency IEP meeting

a 911 call, an ambulance and 9 hours in the ER

Sissy finally has a bed on the psych ward, 72 hour minimum. Don't know yet what her pdoc and therapists will say - they may suggest RTC again.

She had a bag packed and hidden. I found it in my random bed check for objects she might hurt herself with. And there it was, packed and hidden under the blankets she tossed over it claiming "I made my bed mom!" The bag was packed like she was headed somewhere. I called her on it, asked if she was intending on running away and she went to full rage escalation in 3 seconds flat. She became threatening to herself, The Dad and her siblings. I grabbed the phone and dialed 911 and she left in an ambulance.

I made my way down to the children's medical center in one piece and then cussed out loud as I put the van in park in the parking garage because it dawned on me that I made it all the way to the children's parking deck without even thinking. Read: I can easily find my way, as in, WTF?!?! One of my many talents as a parent is I can find my way to the parking deck of the children's medical center with my eyes closed?!?! Yeah. There's something I wanted on my parenting resume. "NOT COOL!" i shouted at God. "SO NOT COOL!"

All the crazies were out so it took from 5:30 until 10:30 before the third year resident took our information and then it took until 12:00 for the attending fellow to agree with the resident's findings that Sissy needed to be admitted. And then it took until 1 am for the orderly to escort her up to the ninth floor in the only wheel chair he could find - the bariatric chair.

When the doctor said to Sissy, "Is it OK with you that you stay for a few days?" She said without flinching and with a lilt as she swung her legs off the end of the exam table, "Well, as long as I'm home for Christmas. I had to miss Christmas and my birthday last year and I don't want to do that again. They didn't give me any presents blah blah blah ...[1]"

He left the room and Sissy hopped down and said, "well mom, you got what you wanted, I'll be out of your hair for a few days and you won't have to listen to me scream at least for those few days while I'm here."

And I pretended that wasn't an arrow straight through my heart and said without flinching, "Sissy, I'm really hoping you'll take this time to learn how NOT to scream so when you come home, you won't start doing it again."

And then i decided to change the subject to play it safe. I said, "Sissy, you say you don't want to hurt yourself. So that means you expect to be a grown up some day, right?" She agreed. "Ok, let's play a game. Close your eyes. Make a picture in your mind of what you look like when you're a grown up." Then I proceeded to ask her questions about her appearance, her clothing, her jewelry and hair, her job, her activities, her friends, etc.

This is the summation of what she told me while we waited for the orderly and this is what has me wrecked, just flat out totalled. These are her words, imagery, all of it. None of this is my embellishment.

Sissy imagines she'll be a grown up at 18. She will have pencil cut, skin tight pants in blue. She will have a white sleeveless top, big breasts, a tiny waist and round hips. She will wear high heeled shoes, crystal jewelry, carry a hot pink fake leopard skin purse and be a dyed blond. She will hang out with all the boys and maybe go out to restaurants with all of them so she can decide which one she wants. She will have friends and they will tell her she is nice and that she doesn't scream. They will know that she is nice even on the inside. She will be an artist and color pictures for a job.

When I asked her if she intended to wear her street clothes to work she gruffly replied that she would wear blue jeans if they let her or just a work uniform.

By Sissy's description, she intends to be a whore. But I didn't point that out to her. What would be the sense? She would never see it that way. And there's the rub. Because she can't call a spade a spade or see truth for what it is, she will not be capable of wrapping her brain around the truth that she is the product of her own design. No matter what I do, no matter how much I invest, no matter how hard I try to help her see the value of changing, she will be a user, an abuser, she'll be promiscuous and get pregnant. There is no other reality.

And even as they were escorting her to the psych ward and she was happy as a clam, giddy and talking up a storm like it was nothing at all to be admitted in a locked ward of the ninth floor of a hospital, she still refused to admit that she packed a bag with the intent of ... leaving. whether running away or she purposely planned to act out significantly enough to land her butt in the hospital, either way, she chose it and refused to admit the truth. [2]

Yes, I have lost my Hope, both literally and figuratively. And now that I've eaten my grits and stopped crying about the reality that it doesn't matter what I do, Sissy's future reality is bleak, I will go to bed.

[1]UGH! SERIOUSLY!? The kid friggin' got more gifts than AB and WG because we bought her gifts and then the RTC blitzkrieged the kids with a bajillion gifts from various local charities!

[2]I gave her the out while we waited for hours. I told her straight, "Sissy, either you packed that bag because you were out of your mind and had no clue what you were doing or the voices in your head told you to, OR you intended to run away. If you give me some other explanation, I will back down. But if you can not tell me truthfully why that bag was packed, i WILL tell the doctor that you are planning to run away or that you've lost your mind." And Sissy's hard and fast response was "I don't know why" and my hard and fast reply was, "then you've made your choice already. Because out of your mind or running away, both have bought you a bed upstairs." Bottom line? She WANTED to be in the hospital.

Sunday, September 12, 2010

She must know something

WG must know something that I don't know about myself. Because at one point in the middle of Sissy's 9 hour standoff (she's currently outside finishing the task it got too dark for her to finish yesterday - and refusing - and getting more disciplines - ad infinitum, ad nauseum, ibid.) I flopped down on the sofa and picked up the quilting (in point, so I could be doing something while I surreptitiously spied on Sissy out the back door to be sure she didn't beat on Grace again) I discovered WG. In true WG fashion, she had spread out a cache of her belongings on the area rug in the living room. She was diligently doing stuff. You know, 6 year old stuff. Engaging herself in a blissful world of imagination with stuffed lions, markers and notebooks. Seriously, this kid is amazing and truth be told, she's just an ordinary, every day kid. Not a genius, not a whiz, not a savant, just plain old WG and that in and of itself makes her amazing.

Seeing me on the sofa, she got up and brought me the notebook and says, "hey mom, listen to this, I wrote a poem!" and she proceeded to sing to a fabricated tune, the following verses:

Love By WG to Mom
I love you.
I like me.

I like you.
I like me.

I love you.
I like you in my family.

I love you.
I like me.
I love you so much.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++
My readership is up. By about 50%. Is it because people are angry that I'm being honest and they want to see just how far I'll go, if my parenting is abusive so they can report me? Or is because I'm being honest in a way that so many other parents are afraid to be honest, that my readers have BTDT and like me, have met the end of their rope with their traumatized children and then what? It's the end of the rope. Where do you go from there? What do you DO?!?

Not everyone I blog with or who reads my blog has a WG that writes love poems. Instead of farming out Sissy to other homes, maybe I should farm out WG so she can be a light for other anguished moms of traumatized RADishes. Maybe WG should come to Orlando with me. She could use the respite too. Because after all, she's the kid sister that isn't getting any love from her big sister.

Sissy got in the van this morning as we went on our way to church and antagonized and lied and manipulated and pestered us the whole way because she saw WG rub her feet on the back of the seat so Sissy just had to do it too, only Sissy outweighs WG by 100% and shook the whole van at the traffic light. I said, "stop shaking the van Sissy" and she said, "It was WG!" and somewhere in that argument about who did what and blaming everyone but herself Sissy said, "And anyway, how could I have shook the van just by rubbing my feet on a seat?!" AAAUUGGHH!!!!

Then as icing on the cake, just as we turned into the parking lot said, "Dad, when are you going to give me back my yo-yo?" Every fiber of my being wanted to jump out of the moving vehicle because the thoughts in my mind were inappropriate and I was afraid of my response. Instead I slinked down and buried my head in my hands.

Seriously? SERIOUSLY?! She wants her YO-YO!?!? And we should give it to her because ... why? Because she has blitzed our brains, our compassion, our empathy, our understanding, our love, our patience and our good nature and given NOTHING to us in return except more grief and headache, tears and frustration? Yeah. Yup. Absolutely. Give the kid her gosh dern yo-yo back. Please. If it means she'll leave us alone, give it to her.

Yes, Christ loves us unconditionally, yes, His blood covers our sins. BUT ... He gives us free will, He says it's our CHOICE to do his commandments. And although Christ asks us to do as He would, to love in like kind, NEVER does it say we have to do it to perfection. We are just to have an attitude and a desire to pursue His higher ways. That's all He asks us of. Point of fact, that's all I'm asking of Sissy. It does not mean I'm not loving her, that I'm withholding grace and mercy, that I'm constipated in my emotion toward her just as she is physically and emotionally constipated, refusing to let go and let God.

So if my readership is up because it's voyeuristic and you're hoping I'll fail, guess what? I already have. Parenting severely traumatized children in a home environment and expecting them to understand and embrace unconditional love of Christ and humans is a set up for failure. I hereby absolve myself of guilt, wrong doing and my imperfection and inability to bestow compassion, grace, mercy and unconditional love on my traumatized, mentally and emotionally impaired daughter EXACTLY as Christ does. Because He's not expecting that from me. He only wants a heart turned toward Him. He's asking for Love poems. He wants me to be glad that I am part of His family. He wants me to like and love myself because He likes and loves me. And I do. Every.Single.Moment.Of.Every.Day.

Once again, Wonder Girl knows something that I didn't know about myself. Thank you God for the WG's of the world. Thank you God that I'm a WG. Thank you God for all the other WG RAD mommies whose hearts are breaking today and every day we try to love our children according to your will. Thank you God for knowing our hearts and giving us new mercies and grace just as you ask us to give it to our ill babies. Thank you God for reminding the WGs on this planet that you will return the years the locusts have eaten and that our rewards will be many. Thank you God for helping WG mommies keep their sanity when even the therapists and psychiatrists are grasping at straws but mental health says these children need to be in home environments. But mostly, thank you God for loving this WG RAD mommy just as I am.

Saturday, September 11, 2010

LONG day with sissy

She refuses to do as she's told so we consequence her defiance.  And then consequence the rage or lying or manipulations she does on top of it. 

It would have been nice to have a day to mourn our dog but instead it has been spent riding Sissy's butt to accomplish one consequence for her disobedience yesterday. She is currently working on consequence number 4 with the threat of number 5 if she doesn't complete the task before my timer goes off in 15 minutes. All told, she's spent SEVEN grueling hours in open defiance, manipulation and combative behavior. SEVEN HOURS.

She's staying out there until she finishes this chore. Period. Then it's showers and bed. Today is one of those days where I'd REALLY like to make her deal with a dose of herself for seven hours in like kind which I'll admit is probably bordering on abuse. But heck, she's abused us for that many hours ...

And the kick in the pants, she was hitting our dog Grace on the head because we left her outside unattended ... and Grace was out there too. So now she can't be alone with the dog.

AAAAAAAAAAAUUUUUUUUUUUGGGGGGGGGGGGHHHHHHHHHHH!!!!!!!!!!!!!

I can't take her crap. I just can't take it. I'm not cut out for it, i don't have the constitution for it, this is NOT how I want to live my life. I'm cooked.

yes, yes, you COULD tell me that this is how she's dealing with her grief about Hope and I'd buy that argument if I thought for one skinny minute that she actually cared about that dog. But since she doesn't show appropriate affection for ANYTHING, I can't tell you that she DOES care that Hope died. I can tell you only that her emotional affect is flat, as always. You COULD argue that I should be helping her cope with the grief in an appropriate way EXCEPT that she only had a 30 minute consequence for yesterday's infraction which had nothing to do with the dog and it has been HER choice to refuse to do it, to lie, manipulate, pitch a fit and attempt to deceive. If I wasn't grieving myself, I'd probably have said, "hey, don't take out your sadness this way." but even as I typed that I knew it would be wasted hot air if I said it to Sissy because she'd just scream back at me something like, "I'M NOT SAD! I'M MAD YOU MADE ME PICK UP PINE CONES!!!!" And I just don't have it. I don't have it today. I really, honestly do not have what it takes to therapeutically parent this child 24/7. I just flat out don't.

Called CBAY. They are requesting the maximum allowable budget for respite. If we can't arrange a self-directed provider we will be getting an outside provider. I need her out of here once in awhile or it's not going to be pretty.

Friday, September 10, 2010

Farewell to Hope

RIP 
HOPE
Beloved dog
Loyal companion
Faithful friend
April 2000 - September 2010

You were such a good dog!

Thursday, September 9, 2010

Emergency Pdoc appt

I called the pdoc earlier this week to say, "hey, Sissy is having some serious issues." He bumped up her monthly appt to this morning.

We talked for some time. We went over therapy strategies. We reviewed the standards: hurting self, hurting others, seeing or hearing things, talking to people not there, hyper sexual or religious, want to die, sleeping, eating, toileting, school and then ... home life.

choices, choices, choices. pdoc agrees with us and the therapy team, it's a matter of choice, not medication or disability. There's no pill to fix this. It's up to Sissy. Pdoc said to her, "If you don't pull your stuff together and start making the good choices, I will send you back to the hospital. you can not behave this way at home. You can not treat your family like this."

Which is what the therapy team has told her. Which is what we've told her. Which she continues to pretend she's never heard. Therapist came this afternoon and we rehashed it all some more and Sissy still sitting at the table, tongue hanging out, staring into space, ignoring us all. I watched her therapist get completely exasperated with her and I just laughed. "Yep. Now you know why we're so put out with her. It's ridiculous. She simply doesn't care."

Therapist said, "I just don't even know what to do at this point! She has NO response to us telling her she'll go back to the hospital! NONE!"

and The Dad and I just nodded our head and said, "yep. we know."

So...

It's up to Sissy. We tweaked her lamictal a smidge and are changing when she doses her intuniv to help her sleep better (her sleep walking and talking is pretty bad right now) and the doc said if she gets worse in her rage or starts talking about suicide to call and he'll up the resperidal. Pdoc is also going to make some of the diagnoses official and fax the report to school in an attempt to nail down a medical IEP.

We're going to switch to CBTs to try to put it in her face that it's her choice to change and we're going to make her "rewards" be temporary. In other words, if she wants TV today, she must bathe properly TODAY. Tomorrow will start it all over. No TV if no proper hygiene. period. It's behavior modification with a short term, temporary reward. We'll also begin implementing a two tier consequence system. Consequence for the infraction and if she escalates or lies, then consequence that too. pdoc said to give her two choices (love and logic) make your bed by 8 am or get no computer time. you pick. He said to keep saying "the choice is up to you. only YOU can control the outcome."

but she's heard all of this and more in one way or another for four years worth of therapy. I'm not thinking it's going to have any affect. After that, there's nothing more that we need to do or change. It's up to Sissy now. I don't WANT her back at RTC but that's not a choice I get to make for her at this point. It's a choice SISSY will be making for herself, harsh words her therapist concluded today's session with.

The Kid

After a month of school behind us, I decided to implement my morning-chores-with-a-scripture idea that I came up with this summer. 

Every morning the kids get a scripture verse on one side of paper with a list of menial chores to do on the other.  I've been picking verses directly related to attitude (October will be obedience).  Today's scripture says "whether we are at home or away, we make it our aim to be pleasing to God." 2 Cor 5:9 NLT

I used it as a launching place to discuss a few of the behaviors the kids have been doing lately that have not been pleasing.  The whole time WG had her hand raised and I was getting irritated because she has a habit of interrupting and I just wanted to make the point about today's verse.  When I finally finished, I sighed and said, "yes WG.  What was SO important?"

"Well, yesterday I was on the slide at recess.  And this girl accidentally kicked me when she climbed up the slide and she said 'sorry kid.'"

"OK"

"and then I said, 'well, actually, we're ALL kids. Because, you know, we're all sons and daughters of God, right? So I told her that only GOD is an adult.' And she said she didn't know that and she gave me a hug."

*big melted mom on the kitchen floor*

Geez. This kid knocks my socks off!

Using today's verse, I think it's safe to say that WG was pleasing to God while she was away. :)

Tuesday, September 7, 2010

It's just a giant bun of pain, remorse and regret

How to eat your burger gluten free
  1. pick the burger joint based upon taste and potato options (i'm a sucker for tots)
  2. drive to burger joint
  3. order burger without condiments or cheese -  IMPORTANT!!!  Condiments and cheese make bun removal very challenging
  4. pay for burger.  hopefully you had money in your coke can - you know, that big change can in your kitchen that your kids put their money in when they break stuff? 
  5. wait for order to arrive.  if teenagers are employed at burger joint of your choice, you may have to wait an inordinate amount of time while they text your order to their BFFs on twitter and FB "OMG, this customer just ordered a burger without ANYTHING! Weird."
  6. go home with hot burger and potato choice
  7. get a plate, fork and knife
  8. place all but bun on the plate.  Dispose of bun in trash can immediately so you are not tempted to say, "ah, heck.  it's just one bun.  I won't get vertigo, joint pain, IBS and a migraine from just one bun" because you've been down that road before and yes, yes you DID get all of those side effects.  It's NOT WORTH IT.  It's just a giant bun of pain, remorse and regret. Throw it away!
  9. add condiments and cheese as desired
  10. eat and enjoy!

Monday, September 6, 2010

Stale mate

After Friday's therapy session in which Sissy went cold in her emotional response, the therapist left saying she had plans to really step it up for home and school visitation with the team to hammer out the truth.  Is Sissy just playing us all with a severe case of RADs or is she genuinely incapable of mentally and emotionally comprehending what is expected of her in a home environment?  Currently, any demand of Sissy nets us a full-rage response.  And these demands include no whining, picking up after herself, practicing proper hygiene or being respectful.  I know.  I KNOW!  We're hideous parents expecting way too much of a fifth grade student that meets the standards in education.  Seriously, we should be taken out back and shot. 

So we've done the following:
#1 - returned her space to it's post RTC glory.  She has been significantly scaled back in her personal items allowable in her space.  Ironically, as I cleared out her space, the majority of what I confiscated was 3 bags of trash.  HOW did she put that much trash in her tiny space?!?  It defies logic.  I'm not kidding.  She'll be a hoarder in adulthood without supervision.  Mark my words. It makes me think that by continually striping her of posessions I may be perpetuating her need to hoarde. Nah. She hoarded before RTC when I was naive and let her keep her stuff ...

#2 - all family privileges are on hold until she can produce a sufficient list of 10 specific behaviors and expectations we need her to do, behaviors that we think will make our home life a much more livable place.  As her therapist said to her, "Sissy, I can think of one that should be on the tip of your tongue!" but Sissy just hung out her tongue and rolled up her eyes.

After much deliberation between us and the therapist, we really do think it's a matter of choice for Sissy. If she is appropriate during school, is able to shut off her behaviors instantly whenever a teacher passes by, if she isn't academically floundering in the classroom, then she's not mentally incapable regardless of her parse learning challenges. Another point that her therapist made that has really struck a chord in me is that Sissy makes deliberate high-risk choices. Meaning, she makes choices to lie or sneak or manipulate when she knows the truth of her actions or words is easily determined but she does it anyway. This would be the sociopathic ideology of someone that is so emotionally distant as to be unreachable. The therapist went on to say that despite what we may have thought, Sissy's RADs is still pretty severe. When the therapist said the words "high-risk choices" it really gave me pause. She's 10. In four years, those "high-risk choices" will be a horse of a significantly different color and consequence. This is a lot to think about, a lot indeed! CAN Sissy be reached? Or are we grasping at straws and biding time before criminal and sexual misconduct begin? I'm very nervous and concerned.

So until the therapy team has completed their full investigation (which means they'll be in the classroom several times a week and in our home every.single.evening), we're going on the assumption that Sissy is choosing to ignore common household rules and expectations. She's choosing to escalate to violence in an attempt to make us back down.

This is distinctly different than AB. AB will escalate because there is something or someone he does not understand. When he comes out of his episodes, he is genuinely remorseful and we get to resolution immediately. Thursday morning is a classic example. I was putting on his AFO's and one of the orthopedic socks had a string loose. AB was pulling it to get it off and I was saying, "no, don't pull, it will unravel the whole sock!" i startled him, he thought I didn't understand how much the string was bothering him and he escalated to full-rage crisis instantly. I followed him to his room, spoke quietly and calmly while I cut the loose string and in 30 seconds he was hugging, crying and explaining what had happened for him. We talked it through and came up with a way to communicate better with one another for next time. It's scary when you're in the moment but manageable. Thus AB can be in a home environment. He seeks to be "better". He is interested in knowing if there is another way to tackle a problem. He often comes up with solutions for himself.

But Sissy? She just doesn't want to do stuff. She doesn't want to be told. She won't obey. She will defy at every turn. She spends her waking energy figuring out how she can do what she wants when she wants how she wants with absolutely no regard for any other human on the planet. We are but drones to be manipulated to bend to her whims. And if one of us defies her, she explodes. Nuclear explosion. That is NOT behavioral like it is with AB and his spectral issues. It's choice. It's not sensory, it's not mental retardation. Yes, this summer we made some strides in attachment by acting toward her as though she was significantly impaired but maybe i did a disservice to her in that regard. In school she's expected to perform at grade level because she can. If we promote the double standard at home by playing it down for her, it's confusing and unfair. Sure, this summer was easy for her and she didn't escalate. But what did I ask of her? Little. I was thinking we'd made progress. Nope. Inadvertently she got me to do what she ultimately desired, she got me to play it down and treat her like a little infant that can do nothing. No need to escalate to rage if people are talking to you like you're mentally retarded when in actuality you're reading at a 7th grade level.

But the conundrum becomes this, she won't escalate for her teachers because she respects their authority out of fear. However, she neither respects nor fears The Dad or I. So she'll escalate every time. And this is why she goes straight to crisis almost immediately after I pick her up from school. Why should she respect or fear me? I've allowed her to convince me that she's a weak, incapable, mentally retarded, socially and emotionally inept child that needs to be coddled and coerced. I still err on her behalf albeit unwittingly and out of self-preservation. (I really didn't want to spend my summer with Sissy in full rage every time she was expected to take out trash.) But if I switch gears now, I'll have a ravenous, un-caged lion in my home. And that's not safe.

So we're at a stale mate. Sissy can have privileges when she writes her list. And if she writes her list before her next therapy session, too bad. We won't reinstate privileges until we've reviewed the list with a professional. End of story.

Saturday, September 4, 2010

Not thinking

AB's fever is 102. Mine is hovering around 99 as it has for the past few days. So I'm not much for thinking today. Besides, after yesterday's therapy session with Sissy, I've got a lot to think about. One of the two key points that jump out at me from the two hour session (and my subsequent evening reading through all of my posts to see if there is a trend in Sissy's behavior pattern) are the following:

#1 - Sissy was completely flat emotionally during the session. When her therapist arrived at the house, she was in full-rage. When her therapist began talking to all three of us, Sissy's tongue came hanging out, her eyes went rolling up and that was it. She made is painfully obvious that she did.not.give.a.rat's.ass. And her therapist noted it. (Hooray for therapists that pay attention to Sissy's crap!)

#2 - after all of these months with IFI only to have Sissy return to her issues with the onset of school, her therapist is about out of ideas. She made the comment that struck a cord with The Dad and I, a comment that is still resonating in both our minds.

If Sissy is unwilling or unable to change her behavior so she can be successful in a home environment, it would be medically unethical to keep her here

In other words, perhaps it's time to acknowledge that a home setting is not the best place for Sissy.

And because that is extremely depressing and my fever is annoying, here's some happiness.

On Saturdays we try to do family things. Sometimes it's a game night, sometimes a movie, other times it's a daytime activity. Last Saturday we opted for family craft day. Much fun was had by all. Here's the proof, including the quilting progress on my most recent project.


Sissy making a photo book



WG loves big cats. She painted 5 pictures of them and made a book



AB painting a log cabin bird house while listening to Coldplay



quilting away!



AB at hippotherapy this morning. First time her rode Serafina!


Friday, September 3, 2010

Post 200!

When I hit my 100 mark, I thought I'd write something poignant.  Powerful.  Praise worthy.  Nah.  I vented.

Now It's post 200 (geez, I'm verbose!) and I'd still rather vent than come up with something flowery, fun or fanciful. (Although I will indulge in the occasional alliteration.)

First Up:
Many huge thanks to all of you that responded SO quickly to my plea for info about fostering a newborn exposed to methamphetamines. As it often goes with fostering, the child was placed with a family member last minute, bypassing the system ... and the waiting, capable arms of a foster family. BUT, it really is best if these children stay with their families. Really. It is. I think...

Anyway, you ladies amazed me once again with your generosity, words of support and kindness. I can't wait to hug you all in Orlando.

Second:
Yep! I said it! ORLANDO! I'm going. Are you? I want to hug you so you better be there. I have 200 posts worth of love saved up to pour all over you amazing gals so be there. Or else. Oh, and bring your quilting. And FYI, if we end up in a quad together, I fart in my sleep. Fair warning.

Third:
Sissy's a yo-yo with her moods. I think she's trying very hard to keep it glued together during the school day and then it just blows up at home. I really do think it's messing with her head, trying so hard to keep a lid on her crap all day. Psychoses is up, so is rage, and every other behavior. And all of it we get at home. As said in today's school meeting, we really wish she WOULD show her behaviors at school it would make it a world of a difference in getting her the support she needs academically.

A commenter asked about her IEP. That's just it. Sissy doesn't have an IEP. She has and RTI and 504, that's it. So today's meeting was about finding ways to document a medical need for and IEP. In the classroom, Sissy is already getting as many interventions and support as the school can legally provide. But it's still grade school. Next year in middle school it's a whole other can of worms. Our goal is to document the crud out of Sissy's issues so that she has a well written IEP before she walks through the doors of the middle school next year.

And in the meantime, her Dad and I pray very hard that
#1 - she shows her behaviors at school
#2 - she doesn't escalate to suicidal and homicidal again because really? This is feeling a bit like deja vu from last year and I don't think I can do another round at RTC with Sissy. I'm feeling fairly kitschy.

Fourth:
I'm not holding up so well. I think it's delayed grief from all of last year's nonsense and the potential for Sissy to come unraveled again so easily. I read other blogging moms that run circles around these issues, it just doesn't seem to bother you that you have psychotic children or impaired kids. Sometimes when I read your blogs I think Wow. I wish I could be like her. But the truth is, parenting such challenged children is seriously challenging me. I'm spent. I'm overwhelmed. I'm wincing at the years ahead of me as AB and Sissy embark on puberty and I want to curl up in a ball when I think of the level of exactitude, planning and preparation I have to do every single day just to keep it altogether for my kids. And that I have to keep it up for that many more years.

I really wanted 5 children. But I'm not managing well with just these three. I feel robbed and cheated. At the same time I feel weak and foolish. Some of you spin circles around me in what you do every day and I feel like a 25 year old ox pulling a plow through rocky soil; I just can't do it. I rationalize my inner struggle by telling myself that I have other irons in my fire and other issues to contend with personally that prevent me from being a super mom; from soaring over and above my children's needs instead of making it an albatross.

My blog is my venting place, my way of saying how I feel in the moment when I don't feel safe to say it in real life or real time. These thoughts don't belong in the moments when Sissy or AB are in crisis. At those times, I have to be a cool, calm and collected therapist and address their needs immediately and appropriately. When it's been crazy all day long and I finally have a moment to steal away with WG, I want to be happy and joyful for HER sake. When I get them all in bed at night, I want to joke and cut up with The Dad or just sit in the same room with him breathing the same air.

I don't want to rehash it all, play it all out wondering if I could have managed the crisis better or how I could be better or what I could have done differently. I just want it to vaporize. I want to pretend for the hour before I fall asleep in the recliner that I live a "normal" life. I want to ignore the fact that therapists are in my home nearly every day. I want to pretend that Sissy and AB don't have 9 doctors and 15 medications between them. I want to imagine that they'll grow up to have meaningful jobs, relationships and fulfilling adult lives. And then a commercial will come on the TV and it will be some endearing family thing and I'll discover tears rolling down my cheek because it's one more reminder that I live in a ridiculously tiny house with a bedroom in my living room because my 10 year old isn't safe ...

When I think that Sissy is still only in elementary school and that she is already so challenged I stop breathing for a second or two. Good God Almighty. It's a blow to the heart every time. When I pick Sissy up from sunday school and she has the same protruding tongue, blank stare and flat affect as the down syndrome child she's sitting next to, I want to walk away and leave her there, pretending I'm not really her mom, that I'm not really the one responsible to help this child navigate life, that because of her impairments, my life and my future are indelibly altered. I want to imagine that she's just fine, that she'll recover and lead a normal adult life but in reality, she'll probably make me a grandmother before I'm 45. And I'll have to make the choice to either raise my grandchild who will likely be impaired like Sissy is, or find an adoptive couple to endure this same hell ...

I want to be confident in my abilities as Sissy's mother no matter what she chooses to do. I want to think I could help other impaired children too. I want to be OK with this life I'm leading. I want to embrace this challenge without breaking my own psyche. I want to feel whole again. Mental health illness steals too much. I worry that it will take it all.

And that, my friends, is my 200th post.

Thursday, September 2, 2010

Just say no to Trazadone

Every time I tell therapists about how hard it is to manage Sissy, I always say,

"AND I STILL HAVE AB!"

Because AB's needs are diametrically opposed to Sissy's. At this point, some of their Dx are similar but either it's her RADs, his ASD or their gender difference but Sissy's Dx manifests differently than it does for AB. That means the therapy and Rx treatment is different.

Read: Mom has to know two different treatment plans to therapeutically parent and medicate two dually diagnosed children.

They don't put this kind of job description on trained professionals! And yet, we're expected to do it. Oh, and kick in the pants, if things aren't going smoothly, the first question anyone ever asks is "what are YOU doing mom and dad?" Not accusatory but because the gut response for any professional is to assume that the adult supervising the child is responsible. But they fail to consider that the supervisory parent is NOT the trained professional, just the 24/7 intern ad infinitum. Without pay. Or benefits. Or lunch breaks. Or caps on 40 hour weeks with paid overtime.

aside: No joke. I LOOK FORWARD TO going to work with The Dad, climbing ladders, getting mauled by rose bushes, covered in cob webs and sweating 2 gallons every day. It's EASIER than being the mom I have to be.

Then the professionals kick the parents once more and say to them, "hey mom and dad, when you call to tell us about your child's needs and I establish that you have done the treatment plan correctly and you tell me it's the meds, I won't believe that either."

O.o

Seriously. This is my daily hell.

Occasionally I toy with the idea of getting the same degrees and profession as the professionals I have to deal with everyday just so I can say to them "in yo face suckers, I know what you know too!" *enter annoying raspberry sounds complete with thumbs in my ears and waggling fingers followed by an annoying rendition of "nanny nanny boo boo"*

OK, to my point. I mean, after all the title DOES address a medication concern.

Last January AB was definitely starting to wobble in his mood and I predicted the diagnosis that didn't happen until June: mood disorder (which will morph into bipolar as he approaches adulthood). His developmental delay specialist put him on Trazadone.

All was well for awhile. AB was sleeping. His stimming stopped. It was better. Until it wasn't. Until the rage kicked in. I kept thinking it was the Trazadone. The doctor wasn't as convinced. Now we've been on hold as we wait for his first psychiatry appointment (9/13/10) so I can hand over medicating AB to the professional that is trained to manage meds. (I love his developmental delay specialist but medications are NOT her specialty. 'Nuff said)

Two weeks ago I was in a panic about AB. His rage was escalating so bad, his mood so flat, I felt like he wasn't there, that my sweet little man had dissolved into a primordial ooze of anger. I phoned my friend who has a spectral son and cried "Uncle!" and her astute hubby said, "stop the Trazadone!'

done.

But AB's speed has exponentially returned, his stimming too. He's bright eyed and happy but wow. He's fast. Painfully fast. So last night I gave him 1/3 of his prescribed dose of Trazadone thinking that would be OK.

nope.

Poor kid woke up with a headache and tummy ache and he's just ... dull. Gray. Lifeless.

Conclusion: I'd rather AB be higher than a kite (provided he's sleeping!!!!) and stimming so hard he's knocking over my lamps than this blob of bones. 9/13/10 can't get here soon enough. I'm going to beg for Elavil or Imipramine.

What the pharmacist says about Trazadone: It's a very old drug, it isn't even classified as tricyclic, dopaminergic, neurotransmitter or selective seratonin reuptake inhibitor. It was created as a blanket drug to address a multitude of mental health issues.

Just say no to Trazadone!

Wednesday, September 1, 2010

pH meter says "DANGER!"

Text msg sent to Sissy's therapist this morning:
The Dad and I need to talk. Sissy not good. Doing weird things since school. Worried about pushing her mind 2 far. Don't want to repeat last fall. We're stressed. Waving a red flag!


Sissy did OK all summer because there were no demands on her. Now, four weeks into the school year, we are watching her mind unravel like a skein of yarn. She's had several crisis calls, a threat of violence against The Dad and me, morning and evening escalations have returned ...

At what point does the school finally recognize that just because a child is academically capable of doing grade-level work that it doesn't mean she is emotionally capable? At what point of psychoses does the team say "yeah, Sissy is not OK in the home?" At what point do the parents have to get to in their own level of stress before someone notices our white flag of surrender because it's too much, because no parent should be expected to maintain this level of therapeutic parenting ad nauseum? Sissy is NOT ok in a home environment IF she's going to be expected to be in a standard school environment. And even then, it's too much to manage her 24/7. The psychoses, despite the meds, are stealing her one little bit at a time. Currently, I'd say no one in our family has "quality of life". Again.

The Dad and I have set the timer, we predict full blown manic, psychoses, suicidal ideation and homicidal rage within 6-8 weeks if the therapists, educators and physician don't start listening to our VERY LOUD BARKING that Sissy is NOT OK. That WE'RE NOT OK managing her. That is is TOO MUCH. It's just too much.

Scariest thing in the world, watching your child's mind dissolve right before your eyes ...