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

Tuesday, January 31, 2012

Setbacks

She made it to the coveted "pink diamond" behavior status.

We've been following the hospital's behavior model, a color code system. Pink Diamond is earned by having green level behaviors for both shifts for an entire week.

So she achieved it...and crashed and burned.

I'm not sure what psychological trigger occurs in her head that tells her and now you will sabotage your efforts because if I did, I'd cut that red wire before the bomb explodes. (or is it the blue wire?)

The pinnacle of the crash included her screaming in the shower that she hates that she was born this way, wishes she hadn't been born and hates that she can't change herself (meaning her organic issues.) I didn't respond directly to her outpouring, I have the suspicion that she thinks being in the shower with the water running equates to being in a sound-proof room. I didn't want to embarrass her by letting her know I'd overheard. Instead, when she was dressed for bed, I gave her an extra long hug and kiss and told her how much I loved her.

Then yesterday, she slept through her school day.

*enter the sound of the Titanic hitting the ocean floor*

By the time I picked her up early so she could attend the monthly FTM, she became unhinged in the van. Fortunately, her therapist pulled up to the house when I did. I met her at her car, offering to carry her belongings into the house if she would do crisis management and deescalate Sissy for me.

For now, I'm considering it a setback and not a return to old behaviors. I'm going to remain positive and keep giving her the praise she needs to stay the course. I'm going to hope that this hasn't all been just a remission but rather a genuine positive change in her behaviors. I sent her off to school with, "you can do it! I know you can have another great day. I believe in you. I'll change your color back to green if your teacher gives me a good report for today."

"ok mom"

Then I drove off watching her drag her gray hoodie on the ground, her gray pants barely hanging onto her hips, her gray shirt slumped off one shoulder, her book bag barely hanging onto the other. She didn't turn to wave at me as I drove off like she always does.

Optimism carries us only so far. The remaining distance is covered while I constantly jiggle my legs when I'm seated and as I sleep in the fetal position, hugging myself in anxious anticipation that it will all fade away once more. the red flags are popping up on the horizon and all I want to do is retreat. Curse you PTSD!

Saturday, January 28, 2012

And they give themselves away...

I love U2. I know that dates myself. I don't care.


Thursday morning Sissy was a chatterbox. If you have a RADish you know what that's like. It's not just an excited child talking about all sorts of things in an excited fashion. No, RADish chatterboxes mumble random ideas in staccato rhythm, much like a slow-flashing strobe light. Short phrases, unconnected, strange thoughts and ideas, sometimes with a hint of anger or irritability.

Ignoring tactics only work for so long and then, it comes to a point when your nerves start to wince and your brain gets a little quirky and screwed up and you find yourself tightly clenching your teeth trying desperately not to explode in sheer frustration. Usually I get out a "Now is not the talking time" phrase but Sissy will immediately come back with "but I wasn't sayin' nothin!" [1]

*sigh*

This behavior is dead ringer for I've done something and I don't want to get busted.

And what had she done, exactly? Dropped one of her morning pills on the floor under the table but didn't ask for help to find it (I found it later after she went to school and I was sweeping.)

Oh, and the back pack. That one was funny.

As per last week's events, one of Sissy's consequences is that I will do random bag checks daily. The last time I had rifled through it was Tuesday night. It was now Thursday morning. Sissy chattered away, adding her thoughts in faster succession as I dropped off AB and WG, leaving the two of us alone to drive the mile and a half to her school. *chatter chatter chatter*

The car rider lane at her school was long and finally, the bells in my head said yo, mom. DUH! she's giving herself away! So I nonchalantly said, "Hey Sissy, while we wait in the line for you to get out, let me have your bag so I can do a back pack check."

I unzipped and saw it. Her pack of 50 markers, her doodling journal and some stickers. "Hey, what's this?" I said casually as I pulled it out of her bag. She grumbled a low, disappointed "ohhhhhh..."

"I don't see how you'll need these items to help you learn today. I think they just need to stay right here in the van with me. I'll give them back to you when I pick you up."

She tsked at me.

Then, she hugged me, kissed me, said, "i love you mom", got out of the van and gaily went into the building.

She gave herself away but methinks this time, she wanted to be found out. I'm loved because I busted her. Go figure.

And yes, I giggled the whole way home.

[1] when she quips back with that retort, i'll admit, it is exceedingly difficult to not engage the argument with a "YOU JUST TALKED RIGHT NOW!" statement. That argument goes like this:

Now is not the talking time.

but I wasn't sayin' nothin!

you just now said something

no i didn't.

still talking

i'm not!

What do you call that?

UGH! I'm not talking.

Be quiet

I am!

Stop

UGH!!!! I'M NOT TALKING!

*me giving her the "mom" look*

SERIOUSLY! I wasn't talking!

Still talking (muttered under my breath)

GEEZ! Can't I say nothin?

nope

TSK! For the last time, I'm Not Talking!

and she's still talking (said to the wall)

NO.I'M.NOT.

(talking to thin air)the words are coming out of her mouth and yet, it's not talking. I'm confused.

HUH? Mom! Stop. that doesn't make any sense!

neither do you.

YES I DO!

I've asked you to stop talking.

I wasn't talking.

And yet your mouth keeps going.

AUGHGHGHGHGH!!!!!!!!

*i giggle*

MOM! Quit laughing at me!

Not laughing at you, laughing at this conversation.

We're NOT having a conversation. I'm NOT TALKING!

*i leave the room to laugh in my pillow*

*sissy storms to her room shouting about how horrible a mother I am*

Wednesday, January 25, 2012

slumber party

In November during one of Sissy's overnight TL's, just before her return to the hospital, we got the chance to have a little nap on the bed.  And there wasn't any RAD crazies afterward, a first.

Then in December after her discharge, we had a few share-the-bed-with-mom nights.  She slept talked, cried, shouted, sat up in bed and rocked and was difficult to sleep with but... BUT, there was no RAD crazies afterward. 

The other night, I went for broke and let her sleep in the bed with me again, WG on the floor.  We had a slumber party and it was FUN!  We all slept peacefully, we woke nicely and it was nice.  Just so nice.  AMAZING nice.  No sleep issues.  No waking, no tossing, no shouting or crying or sleep-walking.  Nothing.

And still no RAD crazies for it afterward. 

I could get used to this.

Monday, January 23, 2012

Blooming Radish

My RADish has bloomed.

Isn't it so pretty?

Alas, the story isn't.  The therapist picked Sissy up from school on Friday and brought her to the house when their session was over.  The look on the therapist's face was good grief, your kid drove me bonkers!  So I said, "tough time?"  And her story began.

Apparently, Sissy brought money to spend. The therapist thinking I was the one who sent her with the money was trying to be obliging.  Sissy was very distracted, disoriented, difficult to keep on task, wanted to spend every last cent and pretty much drove the therapist nutty for the hour and 15 minute session in which she had planned to do a TALKING session with Sissy.  NOT a shopping trip.

Still not cluing in to the whole story, I said to the therapist, "was this YOUR money?"  At which point, Sissy began biting her fingers which means  oh crap.  busted.

The therapist said, "no.  she brought her own money.  I assumed..."

And I turned to Sissy and said, "EXCUSE ME?"

Which was followed by her dashing into the house hollering, "I'm SORRY!  I SAID I'M SORRY!  GEEZ!  I DIDN'T KNOW!!!!"

And I said after her, "To your room.  I'll talk to you later."  And then the therapist and I got our stories straightened out, she apologized and I said, "no worries.  Consider yourself duped by my blooming RADish.  It's not the first time and it won't be the last."

I returned to Sissy who was still pleading innocence at the top of her lungs.  We had an abbreviated discussion about what I had said the night before which was, "do not bring your money."  Abbreviated because she told me other things she snuck out of the house and afraid I'd be unfair in my anger declared a personal five minute time-out.

I returned in five minutes and tried to begin again.  She told me more.  I declared another five minute personal time-out.

I went back a third time and began with, "before I begin with your consequences, is there ANYTHING else you need to tell me that might make me frustrated?"  And she proceeded to tell me that she's been up at night, walking about the house, just doing whatever and that's when she snuck the things into her backpack, that she'd been doing this "all the time" and when I asked why she told the psychiatrist the day before that she'd been sleeping just fine, no problems she said,

"I didn't want him to know."  And I declared one more personal five minute time out which was actually a full twenty minutes while I called a local RAD mom and said to ask for backup because my RADish had just bloomed.  Then I called the therapist and at her advice made alternative plans for Sissy so she would not be attending her Aunt's wedding the next day - a natural consequence.

I returned to Sissy's room, spelled it out for her, wrote a contract, signed it and taped it to her door.  Of course, that makes it sound like it was an easy thing to do.  It wasn't. It took a full  hour of her wailing and declarations of innocence and accusations of my being unjust and unfair, etc. etc.  A wonderful, blissful time was had by all.

And the wedding was beautiful.  It was the first time I had been without her for an outing since her discharge so I felt gaily free for four hours.  I tried to get someone at the reception to agree to providing childcare for the evening so I could have the rest of the night off but oddly, no one wanted to harvest my blooming RADish for me. Go figure?

WG, the flower girl
I made the dress

 
The groom, his son (the ring bearer) and WG




 Bride and Father
the kids' Aunt and Papa

Saying the vows

It was so wonderful.  And I'm so proud of Aunt A and Uncle E!  And the kids are excited to have a new cousin. WG and her cousin B have decided that M will be their second-best cousin (WG and B are already first-best cousins).  AB wanted to know if he could call him UNCLE officially now and Sissy couldn't figure out how it was that Aunt A was now a mom but she'd never had a baby.

Thursday, January 19, 2012

Life

For Sissy who got angry at her backpack this morning

LIFE

Life is funny
Life is weird.
Life makes women
Grow a beard.

Life is scary 
Life is fun.
Life won't end
With the setting sun.

Sometimes life gets
The better of you.
Just laugh out loud
And chuck a shoe.

On days when life
Lets you win
Put on a dress
And spin, spin, spin!

Life never says
What's coming next
But that makes living
Life the best.

So turn your frown
Upside down
And live this life
In your nightgown!


Poetry original work by author of this blog.  Copyright laws apply.





 

Wednesday, January 18, 2012

toothpaste

Rough evening. Sissy's beginning to unwind and get quirky. Tonight, MY undoing was her insanity over toothpaste. Not USING it, not the FLAVOR, not about BRUSHING, about the verification that the tube of toothpaste was indeed hers.

AB was showering in the hall bathroom, Sissy's hygiene bin is in there. I grabbed HER toothbrush and HER toothpaste from HER hygiene bin and brought it to my bedroom bathroom. As she did not personally witness me removing HER toothpaste from HER hygiene bin, she argued the validity of my claim that it was indeed HERS.

Point of fact, she was prepared to refuse brushing her teeth altogether because it could not be proven beyond my word that the toothpaste was HERS. From HER hygiene bin. Her only argument was that there were teeth marks on the cap.

Now, I COULD have argued back that I've personally witnessed her using her teeth to unfasten the cap. But I didn't. That would have been pouring gasoline on the fire. Instead I stood firm. "I don't know what to tell you other than I got the toothpaste from YOUR hygiene bin."

She grunted her frustration back at me.

I stared her down.

She went into the bathroom with a huff and a "FINE!"

I walked into the kitchen and banged my head on the pantry door.

Toothpaste. *thump*

TOOTHPASTE. *thump*

TOOTHPASTE!!!!!! *thump, thump, thump*

For the love of all that is holy, TOOTHPASTE is going to be the death of both of us.

WG suggested that I not bang my head because it might hurt later so instead we screamed into my bedroom pillows. Which, actually, was quite satisfying.

But now I have a headache. I should have opted for more trampoline time. (WG and I had some of that earlier in the evening because OMG, Sissy was driving us both crazy.)

I held it together moderately well today but TOOTHPASTE became my downfall. It's me or the toothpaste, either way, one of us has to go.

Tuesday, January 17, 2012

Empathy One Day at a Time

Poor AB, home from school again with another stomach upset. I was thinking about last year and I think I recall that he had several missed days for illnesses. Typical of developmental delays, our kiddos get sick more easily than others. Thank heavens for the medical excuse waiver for school - any of AB's absences or tardies that are GI related are excused. In other words, the county can't send a truancy officer to my door.

I've got laundry running and coffee in hand, classical music running on the laptop and a quilt all over the kitchen table. I was supposed to be at a hair appointment at 10, AB was supposed to have OT this afternoon, ah. Life was supposed to happen today but I knew at 2 am that those plans would all be altered. Here's to life raising kids with challenges. SAHM? Try work-at-home-nurse-educator-housecleaner-cook-therapist-tutor-scullerymaid-laundress-chauffer-cook-financial advisor-secretary-administrator-handywoman-organizer-interior decorator-plumber-electrician-painter-mechanic-mom

Did I forget anything? Probably. And on a dime, the plans can change and you're grounded, all flights cancelled due to inclement tummies or runny noses or fevers, chills and the trots.

Where's my salary, health benefits, 401K and paid vacation and sick days? That's what I want to know.

And how is Sissy? Here's a copy/paste email to her EBD teacher this morning:
She has still not returned to the raging and self-injurious behavior she was displaying before hospitalization which is amazing. However, I have noticed that she is quicker to tantrum and is increasingly more short-tempered and less tolerant of irritants. She is quick to talk back and refuse consequence but settles down moderately well when she's pushed to accept her limit.

She is still mostly green level behaviors at home but this weekend was on yellow for not following directions which put her in danger. (We were leaving the pharmacy, I gave her a verbal cue and began exiting the store only to realize when I got to the van that she had not followed. I returned inside the store and she was completely unaware that I had even left - scary!) That said, I will add that she is definitely needing more physical cuing as I've seen her space out more frequently the past ten days.

This weekend was monumental however. For the first time in five years, she had a sleep over with a friend! WHAT?! So amazing. Of course, this friend was a mom-orchestrated relationship but hey, that's just one more of our many jobs: social coordinator. Not only that, but she expressed empathy. WHAT?!?!

OK, let me be specific. First, Sissy expressing ANY empathy of any kind is HUGE. COLOSSAL. GIGANTIC. ENORMOUS. HOLD-THE-PHONE-WOW. She was watching Edward Scissorhands and began wailing and hollering and sobbing when Edward was being unfairly picked on and arrested because he was misunderstood. She was nearly inconsolable. It was fantastic! When she calmed down, I invited her to just turn off the movie, which she did. Then I gave her a hug (ALSO HUGE) and said, "Do you know what just happened? You expressed EMPATHY!"

*dear in the headlights look*

I explained it and she changed the subject. No matter. I know what happened. And I am so proud of her. Now, will the empathy she had for a fictitious character in an absurd fantasy movie translate to empathy toward real-life humans and situations, more specifically, her family and friends? Eh, probably not any time soon. But hey, a milestone is a milestone. I'll take it.

I'm glad to see Sissy doing so much better but I'd be lying if I said I wasn't on pins and needles waiting for the other shoe to drop. We've seen her remissions before. I can't safely conclude that she's past some hurdles and that she isn't just running the paces of her mental illness and trauma. RADs is still alive and well but since she's not raging or hurting herself and others, it isn't tripping me up emotionally.

One day at a time, that's all anyone can do. One day at a time.

Tuesday, January 10, 2012

Slow it Down

Slow it Down
poetry is original work by author of this blog.  Copyright laws apply.
 
Oh where are you happy day?
When will you find me
In my bed, gently waking
Slowly opening to the new dawn
As the chirping sweetly sings
And the chiming softly rings?

Eroded by the rain,
Heavy mists linger, sinking lower.
Weighing heavy on my mind
And my heart
While the light grows dark;
Despair silences the lark.

Slow it down.
Slow it down.
Not one sound.
Time is without meaning.
Let the mind capture one finite moment
Then make it stop.
Frame the droplets one by one
In perfectly anchored images
Of hope, dangling in suspended animation
Above the chaos of the world.

In the weight of the burden
There is beauty and life.
Still the weary soul
Slow it down, just one beat.
Mark time, march onward
Through chaos as it swirls.

Sing, oh my soul, in the midst of fear.
Run to the freedom of the river.
Fly on winds of change, fly
Through the night and into the dawn.
Slow it down until I find me
In my bed, gently waking
Slowly opening to the new dawn
As the chirping sweetly sings
And the chiming softly rings.

Sunday, January 8, 2012

Stop walking on Eggshells

AB will be 11 tomorrow. He had friends over today to celebrate, a first ever experience. Just two classmates, a sunny afternoon, some pizza and cupcakes and it was perfect. They jumped on the trampoline, played Wii, laughed and had fun. I was so glad to have this milestone for him finally! Perhaps it will be the beginning of many more fun afternoons with AB and his friends.

Sissy is still managing well with only the minor hygiene relapse now and again. The first week of school is behind her and she's still happy. Although she's not happy with the fact that I've asked her to reshower. I knew it was too good to be true when she emerged out of the bathroom this morning so quickly. I don't think she even bothered to use shampoo. I keep telling myself, "one day at a time. Just one day at a time."

WG's hair is getting a trim this week, she was showing off when her cousin was here last week and snuck the children's scissors into her bedroom and snipped at her locks. Hopefully her Aunt can patch up the damage. She's been on restriction this week for several reasons and has just now finished writing her paragraphs about being respectful and apologizing. I've just now torn up the restriction contract because she has met all of her obligations. As hard as it is to discipline children, it's still much more rewarding to discipline when the child accepts responsibility and begins to modify her behavior. Sure, she shouts, hollers and screams with the rest of the humans on the globe but she always moves forward, not backward. Tuesday I'm taking her out of school for the day so she can meet her therapist (yes, she is FINALLY getting an individual therapist to help her with the struggles of living in a home with challenged siblings!) and so spend some quality mommy/daughter time. I'm excited and she is too.

Even the dog is feeling better. Gone are the days she wallows in pity, lying in the middle of the hallway or getting under foot. She's even surrendered licking her paws, they've almost healed up.

Some of the most crucial changes have come from my own self-reflection. In the past few months I've learned to strive for what I want and need: to stop sacrificing myself for the good of others. Ultimately, putting myself last results in hurting the people I love instead of helping them. If for no other reason, it shortens my fuse and makes me less tolerant in the long run.

I've also learned to set limits and boundaries; to refuse to yield when the people I love begin to take more from me than I am able to give them either by taking their anger and frustration out on me or by asking me to compromise my own needs. An oft heard phrase in the house now is "I have the right to use the bathroom without interruption!" Or some other variance of the same sentiment. Seriously, I've put off even my most basic bodily functions to meet the needs of someone else. Nope. If I have to pee or poop, by God, I'm not going to solve your conflict for you until I've eliminated, thank you very much. Oh, and if I decide to take 10 minutes to eliminate, that's also got to be acceptable. I think by 37, I've earned the right to squat for a minute or two.

Lastly (but only for now as I consider myself to be on a perpetual journey to self-discovery), I've acknowledged that I am allowed to love myself. Hug myself. Reward myself (within reason). Be kind to myself. Be respectful of myself. Take care of myself. Reach for goals and dreams because I'm allowed to have that in this life and I've denied myself those very entitlements because I haven't loved myself enough. Instead, I've tried to love everyone else hoping that the love would reflect back in equal measure. Guess what? It doesn't. Ever. No matter what the nature of the relationship or how transcendent the individual. You can't love another until you first love yourself.

Does this self-discovery equate the change in Sissy? Maybe. Maybe not. I can't definitively declare that she's "better." I've witnessed her remissions before only to be catapulted into the next manic storm. But it does give me power to affect MY future, MY well-being, MY happiness and the direction of my next ten minutes regardless of what the actions and reactions are of the people I love in that same ten minutes. In effect, I've stopped walking on eggshells.

Wednesday, January 4, 2012

Non-dangerous, Less-angry living suits me just fine

Restless night for me, which usually results in an upset stomach in the morning when I first wake up. I try brushing my teeth to get "freshen" up but it doesn't do much for me. Sometimes tums work. Other times some ginger ale does the trick. When absolutely necessary, I take a phergen. I really wanted to take one today but I had too much going on to spend the day in the bed in a drug-induced slumber.

Sissy's first day was a rousing success. I think it's the first time in her whole life that she left a school building with a huge grin on her face and only happy tales to tell. It was amazing, albeit surreal. Can she really be this happy? Pinch me, I must be dreaming. Because she gets out an hour earlier than the other two, we ran a quick errand together and she finished her homework while we sat in the car rider lane. "I did all my homework! That quick!!!" She was very excited. "When I get home can I just play?"

Who is this kid and what the heck have you done with the real Sissy?

AB had OT at the house then it was off to dance for WG. I took AB and Sissy to McDonald's so they could eat and he and I could do his homework together. The children's play area had on D!sney channel programming so once Sissy ate, she went into the play room and rocked and paced and fiddled with her happy meal toy while watching the show, a half smile resting warmly on her face. Unbelievable.

Of course, some of the other customers in the store gave the three of us some odd glances. Whatever, they don't know what life is like for us. They didn't know that despite tutoring AB through 2x8 while Sissy, a 12 year old, rocked while watching a TV in a child's playroom, we were actually having a fantastic evening. If they bothered to ask instead of stare, I might have been willing to tell them. Or not. You never know when I might wave an unfriendly hand gesture at someone (which is kind of fun btw, if you've never done it before. It's oddly satisfying.)

We'll see what this afternoon brings. Sissy's therapist is picking her up and then there's a CFTM at 4 at the house so it will be a full afternoon. I was thinking to myself this morning that although I was glad to have Sissy at home again and see that she's actually doing OK right now, I'm missing the days my time and life was considerably less occupied with the overwhelming responsibilities of therapeutically parenting her. No kidding, this girl comes with an entourage! She said, "Do I HAVE to attend the meeting?"

"Well, yeah. It's for YOU. about YOU. All of these grown ups from different agencies meeting together to discuss what's best for YOU. So, yes. You have to be there." She slumped her shoulders and grimaced. "Besides, they like looking at your beautiful face and hearing the things you have to say." (I didn't tell her it was because she says such insane stuff that it always makes us crack up.)

"Well, it's just 'cuz the meetings are boring."

"You could make them more interesting by talking more. It's for you, we want to hear about YOU."

"I don't want to talk."

"OK, suit yourself. But you DO have to be there."

*grunt*

See, it's still normal around here. Just moderately less rage-filled and dangerous. I like the non-dangerous, less-angry life. It suits me.

Monday, January 2, 2012

Cautious Optimism

Honeymoon's over. She is on red-level for behavior for being physically aggressive, sexual ideation, disrespect, not accepting limits ...

But hey, she didn't rage! She's still only displaying tantrums and shouting provoking things at us to try to get us to engage. No "SIB" [1].

The IFI team has some repeat therapists from before March 2010 which is helpful because too many new faces and I would go insane! We're going to concentrate on family therapy this time. We'll see how well that works out with AB.

WG has already asked for her own individual therapist so I'll do an intake with the agency this week to make that happen. Poor kid, she's got to blow off some major steam in a healthy way! Both AB and WG have already asked me several times, "How long is Sissy staying this time?" They've not been too pleased when I parrot the same response every time they've asked: The doctors and therapists at the hospital felt that Sissy was ready to try again at home. We're going to be positive and support her so she can be successful this time.

It's back to the grind for us tomorrow. Sissy will start out in an isolated EBD classroom with her OHI IEP. After benchmarks and 60 days, the team will reconvene to determine if she should remain in the EBD class through the end of the year, transition to the gen.ed population at the same school or switch back to AB and WG's school. For me it means transporting to two different schools in addition to picking up Sissy a whole hour earlier than the other two because her program ends at 2:30. We'll see how this works out with my volunteer time in the EIP classroom in the afternoons. [2] I could opt-in for bus transport for her but since AB and WG are attending their school on a waiver making me liable for their transport to and from, I can't take the chance that waiting on a bus to transport Sissy will make me late in getting the other two to and from. And neither can I risk leaving her unattended in the house or waiting for a bus.

All in all, I'd say Sissy discharging right at the break and holidays has been in her best interest because she hasn't gone straight back to "normal" living and the regular demands of household and school life. She's been given the opportunity to transition slowly after being so isolated at the hospital for so long. Just going to the grocery store is difficult for her because it's all a relearning process for her. LOTS of reteaching, LOTS of redirection, LOTS of normal activities taken twice or three times the effort and time. At least I've not had to throw homework, extracurricular activities and working into that festering melting pot! We'll see how we fair this week. By Friday, I may be locked up myself ... or rejoicing that it was a great week.

Here's to cautious optimism!

[1] SIB: self-injurous behavior
[2] My original plan was to volunteer in the EIP room to see if I would want to return to teaching full time. Guess what? I don't. Yowza, no way, no how. I'm done with education as a career. Volunteering? Sure. Being responsible for the whole kit and caboodle? Not a chance.