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

Saturday, April 30, 2011

JOB?!?!

A few months back, through ongoing discussions with my daughter's CBAY team, I was led on a journey by the parent support provider on the team to begin a journey to start a parent support group in my region. Long my soap box topic, our DBHDD region is piss poor for resources, wrap around services, availability of psychiatric, therapeutic and psychological physicians in addition we have NO RTC. Not one. Our crisis stabilization unit at the hospital has 28 beds for males and females ages 4-18. Yeah. that's no where near large enough. It means every parent in my area must go the minimum of two hours distance to place their child in an RTC. In addition, our state continues to move what resources we do have to other regions of the state. Worse yet, we have the largest region per square mile but are second to last in state DBHDD allocation of budget dollars! It's an all out mess.

At the beginning of the month, I met with a woman from our state's charter office for FFCMH so I could begin a local parent support group. She asked for my resume because the state charter was looking to hire parent support providers in various state regions in an effort to satellite the CBAY program by planting vendors in the currently unserved areas.

I applied.

I interviewed yesterday. And did my drug test. And am getting my fingerprint background check done in an hour.

It's a 1099 position, hourly pay with mileage. I would be self-generating leads and scheduling visits with families of high risk youths and adolescents with the purpose of helping those families find and access wrap around services in their community and qualifying for CBAY.

I'm excited! It's essentially what I do already, I've always been a hub for other parents. You can ask The Dad, I'm always on the phone with a mom of a challenged child that needs help or a listening ear. Now I'll get paid for it.

I've not officially been offered the position but even if I'm not, it won't matter, I will be getting the new parent support group off the ground. It will be called C.A.R.E., an acronym for Community Advocates Reaching Everyone, a FFCMH group.

Giddy doesn't describe it!

FFCMH find your state's charter group and find out how you can connect with a parent support provider in your area or how you can begin your own parent support group!

Thursday, April 28, 2011

The Twilight Zone

There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and as timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man's fears and the summit of his knowledge. This is the dimension of imagination. It is an area which we call "The Twilight Zone".
Serling narration Season 1

We were watching episodes of The Twilight Zone on Net.flix this past weekend. As I listened to Serling's narration it struck me, hmm... isn't that where the RAD mind dwells?

In stark contrast to the ennui I feel about Sissy and the conglomeration of emotions the rest of the family has about her (WG recently said with a chuckle, "Wouldn't it be great if she could just stay gone?" but her eyes told the truth. She really would prefer it,) it hasn't escaped me that Sissy hasn't got the first idea of how her behaviors have impacted us. Sure, she can parrot back what we've told her but KNOWING knowing? Nah. She's not got a clue. Or perhaps she doesn't care?

Worst yet, she lives in three minute increments of life. If it happened three minutes ago or will happen in three minutes from now then it doesn't exist. It's not short term memory issues, it's selective memory. And all of it fodder for rage when you remind them of what happened three minutes ago or what will happen in three minutes from now.

I mean, telling her the screaming rages may have caused nerve damage hearing loss for her dad would be the same as telling her that a rugby team in South Africa lost their most recent game. And? would be her response.

It's not that Sissy isn't cluing in, it's not even that she's living in a parallel universe. No, she's in the Twilight Zone. The place where peeing on herself to get back at me makes sense. The place where raging for an hour, banging her head on the wall and punching her legs while pretending to not know how to alphabetize spelling words is the best way to avoid the homework assignment. It's the place where screaming that she's hungry and thirsty to avoid doing yard work is easier than consuming the sandwich and ice water that has been supplied for her. It's the Twilight Zone, RAD style.

While I was busy lamenting that I was spending my Easter holiday without my daughter, Sissy was at the hospital having "the worst Easter ever." That evening it was our phone call night so I asked her how her day went.

"It was mostly bad."

"What was bad about it?"

"Well, first, my friend J~, really she's the only girl I get along with here, well, she found the only golden egg so she got a Popsicle. And this other girl, I don't really know her, she found 9 eggs and that was the most of anybody so they gave HER a Popsicle too. And all I found was one egg except J~ gave me one of hers and it was hard boiled so I ate them both."

"I'm glad you got to do an egg hunt. You like hard boiled eggs so that doesn't sound so bad."

"yeah, only then the easter bunny was only our rec therapy coach and I knew it and I was shouting to everyone that it was him and no one listened to me."

"Good for you for recognizing him. You must have been proud of yourself for figuring it out."

"and THEN, this girl attacked one of my friends. And then she did it again and no one knows why and it made me mad because it was my friend she attacked."

"She 'attacked' her? What did she do?"

"Oh. I don't know. That's just what everyone said she did."

"Well... it sounds like a good opportunity for you to tell this young lady about some of your favorite coping skills for when YOU'RE angry."

*herman munster groan*

"Have you had any outings lately?"

"no. I'm on yellow for behavior."

"I see. You've been on yellow for awhile now."

*herman munster groan*

And that was it. That was her worst easter ever. She did tell me about a therapy trip her unit made to the animal shelter in which she had to clean up litter boxes and feed the cats. She made a point of mentioning the cat that "attacked" a therapist last time. This "attacking" seems to happen a lot in the Twilight Zone.

Talking to her on the phone is challenging but getting her to WRITE her thoughts? I don't think she even thinks. OK. That's harsh. It's just that she doesn't put EFFORT into what she wants to say or think about, almost as though thinking would be too labor intensive. Now before you go telling me all about the damaged RAD brain, let me just tell you, this kid has had extensive testing on her learning abilities. Her brain is just fine with some minimal visual processing errors and receptive language gaps, less than AB's and HE can put together some fantastical thoughts.

No, for Sissy, it's too much effort to say something worthwhile, in particular if she has to say it to someone she claims to love. Weirdest part? She'll suddenly have mad vocabulary skills and be as articulate as I am when she's speaking about someone she has little to no association with but WANTS to feel like she's connected with them. You know, if there's something about them that she thinks will make her look better by association, suddenly she's all gab. In other words, she CAN speak well for herself. She just doesn't.

Case in point, she has been requesting all kinds of "stuff" every time we talk to her. So her therapist and I came up with the idea that she earn her "stuff" by doing something for a family member. Her first task was to write a postcard for her brother to earn her bunny slippers. It took her 10 days to write it and put it in the mail (mind you, it was self addressed and stamped). She wrote, "Roses are red. Violets are blue. You are my brother and I love you. Happy Easter"

You might say, "hey, that's pretty good." Except that's darn near close to the exact same poem she has written to one or all of us for the last FOUR YEARS. It's getting old. Not to mention that it's not developmentally appropriate for an 11 year old in fifth grade without an IEP that has a reading aptitude of grade 7.2. AB's response? *herman munster groan*

See? Even AB knows she didn't put forth any effort. And that's the Twilight Zone RAD style. Don't say anything of value or don't over extend yourself, ever. Not even a smidgen. Not even for someone you love. Or miss. Or SAY you miss but

There might be other RADishes in the Twilight Zone with them, but they won't acknowledge that they exist. Or talk to them. Unless someone attacks someone else. Or if they lose their stuff and have someone to blame as "stealing" it. In the Twilight Zone, humans attack and steal, urinate, defecate and rage when they're angry but they don't feel emotion or talk about what they feel or require or give any of the following: love, assistance, grace or compassion.

It's odd, standing on the outside looking into Sissy's world. It's a strange world. She thinks strangely, says strange things, behaves oddly, is SO disconnected from humans and any sense of reality that it makes me shake my head. AB sees the world differently but not like this. Sissy's perception of reality is ... odd.

Being removed from it, I can see it clearly. It's silly, her predisposition to wreak havoc, to be a tazmanian devil, to rage and rage and rage over nothing and then to verbally relate it as being "the worst ever" event or "an attack" or the funniest one, "stealing." (Sissy is good at blaming everything that goes missing as being stolen when 99% of the time it is the result of her own negligence or forgetfulness.)

Being away from it for several weeks I know that 90% of the challenge of raising a person living in the Twilight Zone is getting sucked in with them. If I can just stay calm and rooted in this reality while she spins concentric circles in hers, I might be OK. She'll just tell people she was attacked if I restrain her so she doesn't hurt herself in a rage. I can't win for trying. Unless I jump into the Twilight Zone with her and then her odd life will seem normal.

I think.

Wednesday, April 27, 2011

AB and WG

On WG: Last night was the first grade musical performance in which WG was the dinosaur. It was fantastic and I was filled with pride to finally, FINALLY, be the mom of a child that could do something cool like that.

AND... she found out that she passed the testing, she's in the gifted program!



On AB: Yesterday was "AFO" day[1]. AB's most recent pair of AFOs has been a thorn in our side, giving him blisters and requiring many adjustments, none of which alleviated the problems. He'd never had a bad fitting before and we love the agency that has made his braces since he was in preschool. Finally, the agency decided to just remake them. It's a labor intensive process that requires casting, and positive/negative molds, much like the way dentures are made. AB agreed to let me take pictures this time.

The casting process


The finished casts


[1]AFO - ankle foot orthotics

Tuesday, April 26, 2011

Without Sissy

The last time we went fishing as a family, it ended poorly. That is to say, it nearly required a 911 call for Sissy. This Saturday we were on the fishing dock (see photo below) and The Dad asked me, "Why don't we do this more often?" We were having such a good time it was a fair question to ask.

I already knew the answer, I just hadn't felt like bringing it up. I remembered the minute the van pulled into the parking lot that led to the fishing dock. Right. Last time fishing ended badly. A flood of emotions overwhelmed me and despite the medication, my heart raced and my ears rang. I was able to breathe through it, bolstered by the beautiful day and the serene lake so when The Dad asked his question, I was ready to answer but with a hint of sadness. "We haven't done this in a year because last time we ended the day on the dam side of the lake and Sissy was violent with two little boys on the playground. When we sent her to the van for a timeout, she threw a fit that nearly required a 911 call because she was pounding on the glass and you could hear her screaming through the closed van doors."

"Ah yes. I remember."

We didn't say much else after that. For me the day had a yin-yang feel. I would be overwhelmed by the remembrances of Sissy's incessant grumbling, complaining and yen to make everyone else miserable and then I'd be overwhelmed by the beautiful day, the serenity of the lake and the lightness I felt because Sissy wasn't there. See, I told myself, You ARE a good mom. Your family can have a nice time at the lake. It IS possible. It's even fun.


Even AB had a good time for a little while, although he was immediately displeased with the fact that he couldn't catch a fish and more importantly, catch a fish worthy of mounting on his bedroom wall. Unfortunately, AB's opinion of fishing is to be Captain Ahab.


The fishing dock in the distance


Here is AB mid-swing. When I snapped the photo he was busy stimming, doing his arm swing/clap thing. Sometimes,I find myself doing it too. Really, some days I wonder if autism is catching.

Here's my pole and my bobbin in the water. The shellcrackers (scroll down on the link to see photo) were swimming in the shallows and were snacking on the hybrid pink worms so they were an easy catch. Between The Dad and I, we caught 11 total but none worth keeping. Of course, our luck only exasperated AB. It's hard for AB to have patience with anything that requires time, stillness and silence to be successful.


On Sunday we headed back up to the lake to spend the afternoon at the kids' grandparent's lake house. We recalled the first Easter we spent with them, 14 years ago, long before we were bonded as family through adoption. I was 22 at the time, the same age Aunt A is now. We laughed about that Easter, Aunt A only 8 and mad as a hornet because she had to share the eggs she'd found with the younger cousins. We chuckled because WG has Aunt A's temper. Overall, it was good food, good times, lots of love and laughter and another beautiful day. At super, AB was a stubborn mule about the cake his Aunt A had made and WG made a big deal about sitting next to Aunt T whom we don't see often enough.

That afternoon we headed down to the cove and dock. (I left the camera in the van but here's a picture from December)

A recent storm had ruined the decking leading to the dock, twisting it, flipping it and nearly tearing the stairs from the foundation. Fortunately a tree fell on the cables that anchor the dock so it didn't float out into the middle of the cove.

The walk to the cove is rocky and hilly and usually everyone rides in the trekkers to get down there. The trekkers scare me. Well, not the trekkers themselves but the steepness of the hills that the trekkers climb and in particular, the speed with which Aunt A tears around the trail. I prefer to walk it anyway because it's pretty. Everyone at the house was lolly-gagging so I took off by myself, enjoying the peacefulness, hoping to make it to the dock before the roar of the trekker engine echoed off the trees. Halfway there I was kicking myself for leaving the camera in the van. Such a pretty day.

It was a trick getting to the beached dock, taking off our shoes to jump into the shallow water, climbing over dislodged floats and ducking under Spanish moss covered low hanging tree limbs. But once on the dock, Papa took the kids out in the Jon boat with the troller motor. WG was curious about how it came to be named after Jon and there was mention of renaming it a Papa boat. They putted about the cove and found two dead Crappie (see link above for photo), likely bopped on the head by passing boats. AB of course asked if he could have them mounted.

I went to the top deck of the dock and breathed in the vista. It was a holiday after all and I was one child down. So strange to spend a holiday without your child. I wondered if the hospital was doing anything festive or if Sissy even cared. I marveled at how peaceful life is without her, bewildered that we could have lived for so long under such duress without noticing how bad things had gotten. I was saddened that in order to be a happy family it required that I be one child less and questioned whether or not that could actually be considered happiness after all. I shook my head at myself knowing that part of me wishes Sissy could just stay gone and the other part wishes she could come home. I pinched myself to force myself to remember that unless she chooses to change, we will always live in hell if she is with us.

On the drive home I told The Dad, "I'm glad we can be a happy family. But I will always hate that in order to be happy, it requires we be without Sissy. I'll accept it but I'll always hate it."

This past fall a family at our church lost a daughter, she was only six. And my IRL RAD mommy friend's RAD has cancer. I'm keenly aware that loss of a daughter would be unbearable and I pray for them often, probably more than the average person because although my daughter is physically still alive, for me, I've already lost her.

It's the same strangeness as in the beginning of adoption. When you are preparing to adopt, there's no round belly to tell people this woman is about to be a mother. Yet your whole being is screaming, "I'm about to be a mommy!" And even when you tell people you're adopting, it's not the same response as when a woman announces, "I'm expecting." There's a gap that's not bridgeable. It's not bad, it's just ... different.

So it goes with a child that can't or won't heal, a child that is gone. My whole being is screaming, "I'm losing my daughter!" and I tell them, "My daughter is in a hospital." But it's not the same as telling people that your child has cancer and could die. There's a gap that's not bridgeable. At church I knew I was celebrating Easter without my child. To the onlooker, we were a happy family of four.

And so it goes. I go about my daily life, feeling freer and happier by the day fully knowing that I can only be this free, that life is beautiful and bright again ... without Sissy.

Saturday, April 23, 2011

sick

So... actually I've been pretty sick. Not physically sick like a flu or something but emotionally ill. I had a severe string of panic attacks two weeks ago and boy did it knock me down. The trigger? Sissy. Duh.

I'm on meds and as long as I take them, the panic stays away. I forget for a second and it comes racing back.

The problem is the meds make me feel sluggish and around five o'clock every day I get dizzy and really slow and mildly panicky. So at the Y on Monday, attending adaptive swim for AB, it was 5:30, I was wooshy in my head and I slipped going down the ladder.

Let's just say, bruises from car accidents probably don't look this bad. My left leg has been swollen all the way into my foot. And my belly? Wow. Horror flick makeup kind of thing. My whole abdomen has been swollen which I didn't realize until this morning when it wasn't any more. I only knew that it hurt from my ribs to my pelvic bone.

So between getting adjusted to meds, trying to evade panic attacks that seem to hunt me down and recovering from the body injuries, I've not felt well since April 12th. But heck, I've gotten a lot of quilting done because I couldn't do much else.

Today I woke up feeling much better and we're going fishing. I'll try to remember to get pictures.

Happy Easter.

Friday, April 22, 2011

Dreaming

I dreamed of Sissy last night. She was a baby again, sitting on the dressing table. She was combative and resisting my efforts to dress her. She screamed and kicked and pitched a huge fit about every dress or outfit I pulled out of the closet. I tried to talk them up and convince her, I even surrendered the objective of making her look pretty and opted for putting on whatever she was willing to wear. No dice. Just screaming and resistance.

I wish I could say that dream was a fabrication of fear and stress except it's a reality. She really did things like that. Even as a baby.

Then I woke up this morning from a dream about AB. He was standing on a rocky cliff that stood over the Pacific ocean, the sun setting on the water's horizon. He was wearing nothing but his swim trunks. I had the impression that he intended to jump from that height to swim in the ocean.

I don't know what that means. I only know that right now he's fast, happy, super loving and affectionate and giddy.

Dreams are weird.

Thursday, April 21, 2011

Photo Essay - A Day in the Life

I thought instead of being verbose as usual, I'd let the pictures do the talking. Plus, there's LOTS to say about Sissy but I don't want to. Corey told me not to let her have any more pie. But I wake up with Sissy on the brain so it's hard to withhold the pie. Blogging about it doesn't help. Maybe tomorrow ... or ... never.

Most of the photos look better if you click on them to enlarge them

Why open adoption is important
WG and her Aunt reading a book together on Sissy's bed 
(where said Aunt has been crashing of late)

WG and AB walking in Grandma and Aunt W's neighborhood
and more importantly, NOT arguing, fighting or being ornery at one another

WG striking a pose

"AB! Wait. Please? I want to get your picture too."
unspoken but implied: "ugh. fine."

 "Look Mom! The pinecone is as big as my head!"

First bud on the rose bush
A gift from a student several years ago

Bloomed! And SO beautiful.

The Knockout Roses

I told you my house was tiny

It may be small, but everyone is always welcome here

Hey! A nice shot of Gracie!  
It's rare.  Usually she's too busy wagging her tail or trying to lick us

"Mom?  Please don't make me get down. 
Dad said I could get up here. I'm old. And this is soft.  Please?"

Look!  I told ya'll I decked out my laptop for the phone session with Sissy.  
I am not alone.  I am not alone.  I am not alone.

My MIL's beautiful azaleas

Tuesday, April 19, 2011

Fight for Life

Fight for Life
original poetry by blog author, copyright laws apply
 
Fighting for an unseen cause
Hoping just to finish the race.
Suffering gives me great pause
But a win for me I still chase.

Standing outside the fray
Breathing deeply sun-shining life.
Raging chaos all day
I refuse to engage in strife.

Wholeness is what I seek
Healing, a trophy in my sights.
Restore; this soul is weak
Shelter of peace set me to rights.

Strength comes like tidal waves
Surging, pulling, tugging my soul.
Slowly my heart behaves
Stirring, waking, life makes me whole.

Quietly, I'll not go
The dark night will not o'er take me.
Though the journey be slow
Perfection I will one day see.

Phoenix die and rise again,
My soul is ash and life anew.
Embrace rebirth and then
I'll soar on wings to the great blue.

Blue sky, expanse unknown
Boundless hope of life eternal
I soar o'er fields I've sown
To see the rage burn infernal.

An incense burns sweetly
All that is death has been destroyed.
My beating heart freely
Glides on new wings deployed.
Breathe deep, be overjoyed
A new spirit clearly
Apart from the raging annoyed
Now loves this life wholly.

Monday, April 18, 2011

versatile blogger

Thanks LastMom!

A>

Apparently the rules are now I tell ten things about me and nominate 15 other bloggers.

First, I don't know 15 other bloggers that haven't already been nominated so I'm leaving that up to my commenters. Post the link to one of your favorite bloggers and I'll nominate them. The first 15 that aren't already nominated get the vote!

Second, 10 things about me.
1. married 15 years this June. I've asked for a new kitchen sink and faucet head. And maybe new tile. but that's pie-in-the-sky. I also want to buy us matching chuck taylors.
2. i like to swim
3. i like to quilt
4. i used to play piano really well (before therapeutic parenting took over)
5. I used to sing really well (before therapeutic parenting took over)
6. i really enjoy being a daisy troop co-leader (bridging to brownies in two weeks!)
7. i'm gluten free out of necessity for my health and not because it's the new trendy diet
8. i have had thyroid disease since I was 19.
9. it's strange but i really do like window cleaning in large part because i'm outside with my hubby all day
10. i have weird taste in movies and literature.

Friday, April 15, 2011

Truth or Dare

The truth is, I was never good at the game Truth or Dare largely because I'm a lousy liar. Except maybe that's not true either.

The truth is, I'm good at covering up the truth so I can pursue my fake-it-til-i-make-it mantra.

The truth is, as a child I was told I was a glass-half-empty kind of kid, pessimistic and melancholic.

The truth is, as a child I was told I'd never finish what I started.

The truth is, I had a childhood filled with trauma myself.

The truth is, I have had no control over the trauma that has happened in my life, both childhood and adulthood that now that lack of control has become a trigger for ME.

The truth is, if "fair" is getting what you need, then my life hasn't been fair.

The truth is I haven't been reading my bloggy friends' blogs, even though I fell madly in love with all of you in Orlando. Because the truth is, no matter what you write about, it still sounds like more successful than my family's story.

When ATTACh.org picked up my "Layers of Loss" article to use in their packet for new parents of traumatized children, I was excited because they "paid" me with a membership. The truth is, I'd like to take a bazooka gun and blow it all to hell because those moms on the google chat board are so optimistic and hopeful and their children respond to the therapeutic parenting. It feels like knives carving out my heart.

The truth is I have kept on and kept on and kept on with Sissy because contrary to my childhood messages, I'm an eternal optimist. I cover the truth with my fake-it-til-i-make-it mantra because I don't want to let go of hope that Sissy will finally, FINALLY make strides toward healing.

The truth is I'm happy, confident, filled with joy and laughter, loving, patient and kind. Melancholy settles in only occasionally and always for good cause. The truth is, it has taken me years, but I can finally say that despite the trauma of my own childhood, I'm finally the person I was before my father got sick - and I LIKE me.

The truth is I DO finish what I start provided I'm not emotionally caught up in the most recent life trauma. You wouldn't believe the things I've gotten accomplished in the month Sissy has been gone.

The truth is, if I give up on Sissy, then maybe the childhood message will prove true: I DON'T finish what I start.

The truth is, my entire life has been so filled with trauma, it has overwhelmed me like a 50 foot tsunami crashing over me again and again... and again.

The truth is, the overlaps and parallels between my childhood trauma and my adulthood trauma are staggering.

The truth is, the trauma has finally caught up with my body and mind. After a terrifying string of panic attacks over the last week, brought on by the initial trigger of Sissy reporting in phone therapy that she will return to her behaviors when sent home even though she behaves at the hospital, I have met the end of my resolve, my hope, my strength. I'm exhausted in anyway possible to be exhausted.

The truth is, though I consider myself a strong, vibrant, capable woman, right now I am very fragile and weak. The truth is, I'm terrified that I'll never regain that strength.

The truth?

Sissy will never heal, has no designs to heal. It goes way beyond RAD and therapeutic parenting for her.

The truth is no matter what doctors and therapists say, they will not convince me otherwise: Sissy's brain was traumatized so early in her infancy because of the neglect, depravity and abuse that there is no possible chance of recapturing that which has been lost for her.

The truth is, that is devastating for everyone, Sissy included.

The truth is, for those children whose brains are not so irrevocably altered, it still boils down to choice, choice, choice. Provided with all the tools to heal, all the unconditional love, all the therapeutic parenting skills, it is still a child's choice to heal or not to heal.

The truth is we may have some very difficult choices ahead of us to preserve our family's well-being. The truth is, that terrifies me all the way to my bones.

The truth is, despite it all, some part of me still wants to believe that if I apply what I've learned about my own life of trauma and how I've dealt with it and pursued healing, i can teach it to Sissy and she'll get it, really GET it.

The truth is, I love her so much that I can't see the truth: she won't GET it. Ever.

Your turn. I dare you to tell the truth.

Wednesday, April 13, 2011

Steps, weary steps

STEPS WEARY STEPS
original poetry by blog author, copyright laws apply
Dedicated to Lori


It's just a step away
This day that's called "tomorrow."
A short arm's distance
Will remove me from the sorrow.

It's just a step away.
On the horizon, I can see
A different way of living
A better way to be.

It's just a step away,
The nightstand books all say.
I read the printed words
Yet it remains today.

Step over step
I trudge endlessly on
Step, one more step
The horizon is gone.
Step, stomp, step
It's further still.
Steps, weary steps,
All up hill.

It's just a step a day
But it's further, further away.
Peace and hope are floating
On winds that sting my face
As they bluster by with race,
A speed the defies pace.
Peace and hope are gloating
I can't catch them today
They are still a step away.

Grocery Shopping

I know I'm not the only one that can't take her kids to the grocery store. I mean, I CAN take them to the grocery store I just don't think it's a good idea. And by not a good idea I mean, it's nuclear fall out.

Last time I took AB to the grocery store, it ended with him in a full body restraint in the front yard because he had come undone. He screamed, hollered, said I was killing him, kicked, tried to bite and I patiently laid over him (in the front yard, mind you) and spoke kindly. "Son. I will let you go if you don't run away. I will let go on a count down of three. Three, Two, One" and he was through the front door, into his room, trashed it, threw his body across his bed and sobbed and screamed and sobbed and screamed. After five minutes,the cold items safely put away, I went in quietly and lifted his shirt to rub him with his desensitization brush. After another five minutes I rubbed his head. After another five minutes he hugged me and kissed me and cleaned up his room.

That was in February over president's day weekend. I haven't taken him since. Normally I have him listen to his mp3 player, I let him be Captain of the Grocery Isle and Captain First. Normally I have a routine to shopping, a list and a scheduled time. When I don't do "normally", AB doesn't do "not normally". It's normally not good. When I say not good, I normally mean, nuclear fall out.

Shopping with Sissy? Let's not go there. My heart is racing just thinking about it. No, seriously. It is.

Shopping with WG is a blast. She is fun, fun, fun.

The result is that I typically shop at night when the kids are in bed or when The Dad is around to be with the other two. And the last few months before Sissy's hospitalization, if I SAID I was leaving, Sissy raged, which meant I didn't go.

And shopping only after 9 pm when the children are in bed means I'm tired and want to be in bed too. It also means our grocery store, though claiming to be 24/7 only has the "do it yourself" checkouts open which are not intended for large grocery shopping tabs.

Because when I shop, i try to do it once a month so I ALWAYS have a large grocery tab.

Which means, I haven't been shopping.

Which means, my pantry and fridge are running low and worse, we're out of toilet paper.

Which means I have to go.

Which means my heart is racing just thinking about it.

No, seriously. It is.

Just one more unintended issue to contend with when you find yourself parenting challenged kids.

Tuesday, April 12, 2011

The Duck Song

My niece introduced us to "The Duck Song" this weekend.

First, let me say, I don't miss teaching, but I do miss spending my day with teenagers. Teenagers are so much fun. (I know, I know, I don't have any yet and I'll be singing a different song later but for now, let me pretend that I like teenagers.)

So this Duck song: I do believe our lovely little duck has learned some tricks from our RADishes. See for yourself.

Friday, April 8, 2011

ENOUGH

The hospital Sissy is at has a policy for out-of-town families that therapy phone sessions be conducted once weekly with one mandatory face-to-face session a month. TLs (therapeutic leave) don't start until after 30 days. Sissy has hit thirty days so the TLs begin.

*whine, moan sob*

Oh, the TL. Yes, an ulterior motive to try to trigger the behaviors so the hospital has something to document for insurance to believe that a child still needs placement. It's a game. And yes, I'm aware this statement reads poorly. I understand that it sounds cold, callous and unfeeling. Go ahead, say it, Don't you WANT Sissy back?

Yes. IF she's healthy and stable. No point in sending her to RTC for thirty days so she can come home and do it all again. As I told her therapist, "she needs time and distance away from her rages so she can reset her brain." It's kind of like a road - if it goes untraveled long enough, the grass and weeds start growing up and eventually it's impassable. EXACTLY the plan, provided we can keep Sissy in RTC long enough.

This week's phone session had me on edge, unable to sleep, pacing, running thoughts in my head, anxious, just worked myself up into a real dither. The point of a therapeutic phone session with my child is lost on me. I have done a rough estimate and have figured that I've logged the equivalent of two straight months, 24/7 talking to doctors and therapists about my child. It hasn't done *bleep* for her yet, so how in blue blazes will it do anything NOW? It's so *bleeping* useless.

And then she says crap on the phone too. Like how she'll only use her coping skills at the RTC and won't use them at home. And how she likes it at the RTC. And how she doesn't like it at home. Or how she won't rage at RTC but will rage at home. SAYING IT. OUT LOUD. IN FRONT OF THE THERAPIST. She has no intention of changing her behavior with us. And no answer for why. Said that she knows her rages give her brother migraines. Says she knows it scares her sister, that her sister is afraid of her. Knows it hurts our feelings when she tells us that she will refuse to obey unless we give her something and that she doesn't love us or even like us.

I think I could do without the *BLEEPING* phone sessions, thank you very much. But now, NOW we have to add the *bleeping* TLs to the mix. And I said straight up, I'm not bringing AB. Period. No way in hell am I subjecting him and all of his issues to it. WG, yes. She can deal with it. But poor AB can't even tolerate being in a vehicle half the time.

It's too much. It's all too *bleep bleeping bleep* much. Enough already. Seriously, enough. Why should we continue to put forth effort if she's saying in therapy 30 days in to her placement that she has no intentions of altering her behaviors at home? She shows NO remorse. None. No love. No compassion. No feeling. Nothing. Nothing at all. When asked if she feels bad about her rages afterward she paused and then said, "no. not really."

And today ... today The Dear Dad learned that he may have suffered nerve damage hearing loss as a result of her rages. If that's not a significant price to pay for our child, our daughter who DOESN'T *BLEEPING* CARE, then I don't have a *BLEEPING BLEEPITY BLEEP BLEEP BLEEP* clue what the *BLEEP* is.

Tuesday, April 5, 2011

28 days

Just trying to soak up the bliss in the country. 28 days Sissy has been gone. I know, I said I wasn't going to count but it kinda hit me this evening; the fact that she's been gone four weeks today.

I'm still doing everything in my power to not think of her mess, to not get riled up, to just breathe and let the waves of peace wash over me. My ears are ringing less and less everyday.

Except I still wake up wanting to punch something (and as I enlightened the Orlando moms, do my "shower therapy" verbal chanting). I have to cognitively remind myself when my eyes pop open that Sissy isn't here, the morning will go well, the afternoon will go well, the evening will go well, the bedtime hour will go well, that I will be well, that my family will be well. Yep. All that before my body rolls out of bed.

Men have no idea that women can do so much before they even move a muscle every day.

Spring break week and it's the first spring break EVER as a parent of school aged children that I haven't been on edge.

I still have to force myself to stop thinking about her at night so I can fall asleep but at least I'm not crying myself to sleep about her. I still have weird anxiety filled dreams about Sissy but at least I'm not waking up to a living nightmare too. I still think about her and talk about her during the day but I can stop myself and redirect my attention to having fun with the other two or by doing fun things for myself. Hello? LIBRARY?! My favorite weekly family activity that was completely usurped by Sissy this school year. Next best, parks, and we have done three already and this is just Tuesday. (AB has gotten in some serious swinging mileage.)

Laughing. Ah. Laughing is so good. And how about this one? AB and WG chasing each other tossing pillows and stuffed dogs and ducks and giggling, smiling and having a rip roaring good time just the two of them. When was the last time THAT happened? It was so nice. And I only said once, "be careful, you might break something." And guess what? They listened and obeyed. Just like that. When was the last time THAT happened?!?!

28 days ... of beauty, bliss and bounty.

Sunday, April 3, 2011

Can I still have a faith and raise a RAD?

Went to church today. It's tough to go when it often feels as though church and a deity and congregants and faith all seem so ridiculously useless when our family is in such upheaval.  It's not like we haven't prayed unending prayers for years and years regarding Sissy and still we have no answer that fits and is functional for all five of us.

I'm speaking to the choir because I know so many of my awesome, fantastic, amazing RADical mommies have BTDT in their own way with their kiddos.  So first off, here's to all the parents that still have their faith even after disruptions, dissolutions, institutions,investigations, therapies, agencies and all of the other maniacal nonsense the occurs in this RAD filled life.  I think if you still have faith after all of this, you've got the strongest, most rock-hard faith of any person walking the planet, even if you never set a foot in the doorway of a church again.

Our senior pastor is very poignant. He speaks monotone, has six different lead-in stories, tells occasionally funny anecdotes to stir up the crowd but always drives home a message that leaves the parishioner thinking long after they've walked back out the church doors an hour later. Today, he talked about the blind man that was healed, recounting John's story in the ninth chapter. Forty-one verses and, as our pastor informed us, only 2 verses actually specifically addressed the nature of the blind man's healing. The verses beforehand and afterward talk about everything else, including the huge debate that ensued with the pharisees because Jesus had the audacity to heal this man on the Sabbath. Thus, the pastor said, it wasn't about the blind man at all, or the fact that Jesus did healings or that the pharisees were annoyed by it all. It wasn't about the years the man spent blind and begging, having been born blind by no fault of his own or of his parents. No, the point of all 41 verses was to reveal to the listener that Jesus could heal, does heal and that the where and why of it bears no consequence or blame.

The rest of what the pastor said, I tuned out, not because he was boring but because it gave me cause to reflect on my own situation. Which, I point out, is proof of a good sermon. Raising Sissy has nothing to do with my infertility or our choice to adopt, her abuse and subsequent RAD in addition to her dual diagnoses. It has nothing to do with the inability of the state and federal governments to meet the needs and demands of disabled persons. It has nothing to do with the sacrifices our entire family has made in attempt to provide the best possible situation for Sissy to grow and nurture. The story isn't about Sissy's rejection and/or inability to receive those sacrifices. And it's not about the grief, pain, loss, suffering, helplessness and hopelessness of it all.

No, the point of it is love.

Why have we done all of this? For love, out of love, with love. All of it has been in the name of love.

It's about the ability to give and receive love or the acceptance that love can be rejected and withheld. It's about the unconditionality of love regardless of the conditions in which love is returned, if at all.

So I learn that it's about God, after all. The author of love and creator of a faith that is built first upon the foundation of love. He, who has sacrificed more, been rejected more, been abused more than anyone in all of humanity all for the sake of love. And if you ask Him if he would do it again, He wouldn't hesitate to say yes. In fact, He'll go one step further and say of all the gifts He created, the greatest is love.

If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. 2If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. 3If I give all I possess to the poor and surrender my body to the flames,b but have not love, I gain nothing.

4Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6Love does not delight in evil but rejoices with the truth. 7It always protects, always trusts, always hopes, always perseveres.

8Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 9For we know in part and we prophesy in part, 10but when perfection comes, the imperfect disappears. 11When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me. 12Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

13And now these three remain: faith, hope and love. But the greatest of these is love.
I Corinthians 13: 1-13 NIV

Read this passage again, this time thinking of a RAD. Ah... how it rings true! Is this not what our RADishes are all about? Do they not sound like gongs and cymbals when they speak without the context of love? Every last word of this passage is a missive to RADs and of every passage in scripture, none speaks more truth to the purpose of our faith in Christ. Why then does it pain us so much when our children refuse love? For the same reason it pains the Holy Trinity, because it is a rejection of a perfect gift, given out of ultimate sacrifice. I ask myself, Do I care about infertility, adoption, disabilities, ridicule from the public, personal sacrifice or any of the multitudinal layers of loss? The answer is No, when love is returned, the pain of it all evaporates. I have received the ultimate gift in return. It is worth it

And when our RADlings can't or won't love, oh how it makes every ounce of loss hurt that much more.

In a religious context, did Christ feel every stripe, every blow, every last withering breath on that cross? Absolutely. Does he think of it when we return His love? No. But how much do those stripes sting him even now when we deny Him?

I ask myself one last question, Do I still believe in Christ? Do I still have faith? Because love exists, the answer must be, yes.