Life with AB

I have decided that 10 year old boys are awesome. Well, mine is anyway. And no, you can't have him so don't ask. Neither will I trade.

On cue with his rapid onset of puberty has been the rapid onset of self-awareness and curiosity about the world around him. He's always been curious, asking random questions day and night so that I often hear myself declaring, "you've reached your question quota for the day, son!". Lately, however, his questions have more substance and at the very least quick wit and planned humor.

He is SO much fun!

Here's a brief window of life with AB.

Skipping into the room, swinging his arms in tandem, backward, then forward then bumping the closed fists together in front of his belly button over and over, he called out. "MOM! Mom." He was still standing 15 feet away, having just entered the kitchen, his toes barely touching the linoleum. I was standing at the kitchen sink, running water, the dishwasher was on and the window AC unit over the sink humming while the washer and dryer in the laundry room, three paces away were running. I could hear nothing other than the cadence of his voice.

"Son, please come TO ME to speak."

"But mom. Mom. Mom this is a good question. Mom. Mom. MOM. MOM!"

"Son, come TO me."

He grunted and skipped to me, still arms swinging, fists bumping and he stopped just at the kitchen counter. He began pacing side to side. (If you don't love someone with an autistic spectral disorder, you can't appreciate the notion that for them, speaking requires full body movement.) "Mom. Mom. NOW? Can I tell you NOW?!"

"Son, say, "Mom, can I tell you something when you are ready?'"

He sighed. He knows he has to rehearse the social cues but really doesn't see the point. After all, I'm standing right there and since I've never said otherwise, he's assuming my ears are still working. I prompted him again. "Mom can I tell you something?"

He looked at me with one of those if i didn't love you so much I might want to hit you looks and then mumbled, "momcanitellyousomething."

"OF COURSE!" I said enthusiastically and turned my whole body to face him and looked straight in his eyes.

He resumed the rocking and the pacing and the stimming and true to form, touched the top of his head with his right hand before speaking, as though he is touching an imaginary button up there that makes his thoughts come together as words. "Mom. I was thinking."

"What were you thinking in that great big Jimmy Neutron brain of yours?"

He stopped moving, processed my joke and then let out a half chuckle. Then without missing a beat, "mom, what if they could just, uh, um, what if they could just, just, what's the word, mom?"

Sometimes he gets stuck in his thoughts and it's so hard to navigate his thought process when he's given me so little. "tell me who 'they' are."

"Oh yeah, that's right. The doctors." Back to pacing and fist bumping, the rest of the thought came tumbling out. "What if the doctors, um, uh, you know, if they could just um, do a something where they put her to sleep and they do stuff, what's that called?"

"surgery?"

"yeah, that's it, that's right. Surgery. What if the doctors did surgery on her brain and they took out the part of her mind that makes her be bad and then she would wake up and be good."

"You're thinking about Sissy?"

"Yeah. Can they do that mom, can they? I just want her to be good and then she can be in our family and it will be ok. OK? So can they?"

Of course, after a thought like that, I had to gather myself for a second. "Well, your idea is a good one. Unfortunately, it doesn't work that way."

"But why?"

"The brain isn't made that way."

"oh." And he turned to walk away.

"Son?"

"yeah?"

"You're a good brother for thinking so hard about how to help your sister. And I'm very proud of you."

He hugged me and kissed me and skipped away, swinging his arms and bumping his fists but not before he touched the top of his head, I presume, to turn off his imaginary speech button.

Every conversation with AB is like this. He'll be stoic, silent, refuse to interact or say anything to anyone, even when asked a direct question and then out of the blue, he comes bumbling up to me with some thought or idea that he has been stewing on for God knows how long. Once I asked him, "Son, how come sometimes I ask you questions but you don't answer? Do you hear me? Are you mad? Do you wish I would shut up? Are you annoyed with me? Or do you just not want to say?"

He got a slight grin but never made eye contact with me as he mumbled his answer, "I just don't want to say." I think it was funny to him because I figured out his secret. He hears all and knows all but most times, he'd really rather not engage.

Unless it's about food. Don't mess with his food. He will be angry, irate and has had meltdowns and rages if you rebuff or attempt to alter his dietary habits. In addition, he's a "food bolter", a typical eating condition for persons with F-G syndrome. He will shove food into his mouth fast and without taking the time to properly chew, filling his mouth to full and then attempting to swallow. i don't wish to say how many times he's choked. Or wretched on food that had a sensory texture he couldn't endure. Meal times with him are always interesting.

Mornings are also a time of battle. He doesn't want to get up, sees no reason why his mother insists on waking him every day, typically ignores me until I mention breakfast and in general, it's a test of both our wills that usually ends with him staunchly cocooned in his spiderman blanket while I return to the kitchen to bang around some dishes to blow off steam. Except the other morning he arrested the angst in ten seconds flat. I was still putting away dishes assuming he was rolled up in his tight little ball when he surprised me, standing at the kitchen counter, dressed and stimming. I'd already prepared his breakfast and morning medication and apple juice. It was sitting on the counter waiting for him. He began taking his medication and then, mouth half full said, "mom, is there a pill?"

Thinking he was talking about his morning meds and wondering if I'd missed one, I stopped with the dishes immediately and went to him. "A pill? Did I forget one? Did I give you Sissy's meds by accident?"

"Huh? what are you talking about?"

My turn to be confused. "well, you said 'pill' while taking your medicine so I was confused."

"Oh. No, it's not that kind of pill. I mean a pill."

"A pill for what?"

"To fix it."

"A pill to fix what?"

Exasperated with me for not reading his mind, "Is there a pill to fix my autism?"

Once again, I found myself taking a deep breath and being amazed by my little man. "Well, bud, I'm sorry. There isn't."

"Oh."

I explained how I have thyroid disease that will never go away but my medicine helps my body work better just like his autism will never go away but his medicine will help his mind work better. He was not enthused by my explanation. "Sorry bud. I wish I could fix it for you." He hugged me and kissed me and took his breakfast to the table.

Then yesterday he made me laugh. "Mom. How dumb is she?" This he said with a mouth full of food. Oh, and did I mention he has a speech impairment? So full mouth, food bolting, speech impairment, stimming and random questions and thoughts. It's a whole lot of fun talking with this boy.

"how dumb is who?" Thinking he was referring to Sissy.

"Grace."

Now, it's no mystery. Our black lab, Gracie, isn't very bright. She's sweet, she's beautiful, she's fun to be with but she's not smart. At all. I laughed. "Well, by 'how dumb' what do you mean?"

"you know. Like in percentages. Yeah, how dumb is she in percentages?"

Chuckling because he used a word like percentages, I quipped back, "I have no idea. What do you think?"

He smiled and said, "I think she's 80% dumb. yeah. that's it. 80%." He chuckled at his joke and looked to see if I had got it and was laughing too. Which of course I was, how could I NOT find that hysterical. I think he enjoyed more that I was laughing at his joke than being proud of himself for thinking it up. One of these days I'm going to capture his laugh on video. His laugh is the single most amazing sound in the universe.

Such an amazing boy, he drives me batty sometimes but he makes up for it quickly when he's talking or being silly. His new game at the pool (and then at the lake off the dock yesterday) is to take a running leap into the water while posing in a crazy samurai ninja type move while shrieking in some quasi mode. It's hysterical to see but I always get a little nervous because I can hear him laughing at himself underwater and I'm worried he'll choke! lol Mothers. We're so annoying. We take all the fun out of things.

Right now his biggest struggle is riding in the van. So for the rest of my readers that are parents of spectral kids, these suggestions may help you as they are proving to be ingenious ideas for our little man:

#1 - assigned seats with head rest covers that "mark" their spot. The kids all picked out their fabrics for their head rest covers which are easily removed for washing or reassigning seats. AB likes it because it makes it "HIS" seat.

#2 - a small white board and a few white board markers. On it I write the following: Going to *fill in destination*
Arrive at *fill in estimated time*

AB has access to the markers so he can darken in the words or color it or whatever suits his fancy. It helps him keep track of what is happening and minimizes his anxiety about travel.

#3 - goes along with the whiteboard, he has a battery operated digital clock that has a built in light to see it in the dark. I've set the clock two minutes faster than my van clock on purpose. In the event that my timing is off for our estimated arrival time, the two minute differential will either cover my butt or make it appear to him as though we've arrived early.

This also minimizes his anxiety and helps him feel like he has control.

#4 - his own house key on a lanyard that dangles from the clothes hook above his head. One of AB's biggest triggers is the fact that I do a quick clean sweep of the van every time we arrive home to keep it decluttered. As a result, I'm always the last to the front door to unlock it. There have been many times that AB has run to the front door before the van is in 'park' in the driveway, banging and screaming to be let in. Now with his own key, he has autonomy. he hasn't actually said so, but I think he is really proud of it.

#5 - a van stash of vistaril and capri suns to dose immediately should crisis arise. Which it does. Often.

Coming up for the van:
#6 - earmuffs such as the kind that air traffic controllers where on the tarmac when directing planes to take off or park. There's a lot of noise in the van and it makes it hard for him.

#7 - a map of the local area and mapquest maps for longer trips so he can follow our path. I've tried a GPS but since it's on the front dash, it became a nightmare because he couldn't see it. LOTS of screaming about that and mom has a van rule: no screaming in the van or mom pulls over and turns off the van. I've done it. MANY, many, many times.

#8 - mandatory mp3 player with his aresenal so he can have a private music selection.

#9 - keeping the weighted vest in the van. He doesn't wear it at home anymore but I think it will help him a lot.

RESEARCH - the digging dog leaves no stone unturned

For those that need this information as well
(sorry, this is US data only.) 

 

Disclaimer: the links provided here are not direct suggestions or opinions of the blogger. The intent is simply to assist in the reader's own research on topics of the disclosed nature and content.

1. state statutes on neglect or abandonment

2. mental health law organization

3. custody relinquishment: a pdf from Bazelon about the travesty of custody relinquishment to get a child with mental health needs appropriate care

4. Court appointed special advocates

5. NAMI document on the "custody relinquishment national scandal".

6. article about custody relinquishment many resources and options in Washington state. Why not elsewhere?

7. Maryland state pdf on custody relinquishment

8. blog dedicated to adoptive parents that are forced to relinquish custody to get appropriate services for traumatized and/or abused children

9. child and adolescent bipolar foundation and a forum discussion on custody relinquishment

10. california laws on no-fault dependency

11. no-fault dependency. I've had considerable difficulty nailing down a reasonable link for this option in relinquishing custody of a special needs minor child because the parent or guardian is unable to manage said child's level of care. Anyone that finds a reasonable link, comment and I'll edit.

12. CHINS(Massachusetts), CHINS Washington, CHINS Virginia, CHINS Georgia

13. Ungovernability

14. unruly minor another category I found lacking in sufficient online resources. Again, should you find adequate links, please let me know.

15.  when to contact a protection and advocacy system or client advocacy program national disability rights network lists advocacy groups in your state

Think you may know of a few other stones I've neglected to turn over?  Comment away.  I'll dig some more.

Hummingbird Hypothesis

Some people go on alcohol benders. Others go on drug binges. There's also sex-aholics having hours of intercourse with random partners until they have made themselves raw. Then there's the eating disorders: eating to the point of purging or refusing to eat to the point of dehydration.

Sissy?

Ragefests. She isn't satisfied until the rest of us are reeling from the trauma. Then she's a happy clam, content and giddy while the rest of us nurse our headaches, ringing ears, frayed nerves and tense muscles.

Rage fest lasted Thursday night until this morning when she woke up completely regulated, compliant and well rested but not until after I drank a wee bit too much sangria last night to ebb away the pain. Her therapist from the new IFI team has spoken to us twice a day for the last five days and is trying her best to tweak the CAFAS rating to get Sissy back to a 140, the qualifying number for APS to consider placement. There have been discussions of calling 911. There have been talks about suicidal ideations and self-harming behaviors (which she has not displayed yet) and the possibility of emerging psychotic events (which we were able to present from her journal entries - i don't want to rehash those words. They hurt too bad or are so wild and zany it's alarming how "off" her mind is.)

Emotionally standing outside of this situation, I'm so saddened and disheartened that such a young girl can be so damaged, that we've hit the ceiling, that the only answers to solve our situation will bring irreparable heartache and damage to our family. There is no win. There is no hope. There is no help. There is nothing.

In church yesterday I hung my head in sorrow. The pastor preached from Matthew 10:40-42. He talked about how if we extend a hand of compassion and caring first, those to whom we extend that hand will yield and receive. Sure, unless that person suffers debilitating mental health illnesses Sissy would rather die or kill one of us than yield and receive. That is RAD in a nutshell. A reversal of the human condition. Instead of yielding and receiving grace and compassion, caring and selflessness, they rebuff it, strike out at it and seek to destroy it. In the RAD mind, those kindnesses are threats to their survival. The only option is to destroy that which they perceive will destroy them. Reasoning, logic, engaging, NONE of it alters the erroneous hard-wiring in their brains. It can't be undone. And retraining can only be taught to the willing.

Sissy isn't willing. Her new IFI therapist has her pegged inside of a week. "She's doing it on purpose."

Yep.

And Sissy's reasons? Really. I just don't want to tell you what she's said.

So in two weeks' time I find myself just as frazzled and empty as I was before her placement in March. I feel guilty for ever wanting a child. I could have just gotten over it and been childless. I should have. I feel angry that one child's illness can wreak such havoc on so many with no way to prevent it without heaping further harm upon our own heads. I feel jilted that the mental health community is as helpless as I am. I am terrified that even with a developmental delay diagnosis we'll discover that our state has bankrupted those resources too and then we'll be without ANY help. I am furious that I didn't damage this child and yet my family pays the price for the abuse every day. I feel trapped and that my life isn't worth living. It feels like everyone else lives free and happily while we remain caged in this unrelenting nightmare. I beg God to be merciful and cause a disease that makes Sissy an invalid so she is incapable of raging anymore - seriously, 24/7 convalescent care of a minor would be easier. I imagine ways in which I could set my family free and all of them include me assuming that Sissy's life is more valuable than mine.

So I sat in the garage on a 99' day and cried and pondered and prayed and shook my head at the insanity of it all. We are trapped, so horribly, terribly trapped by our daughter's ill mind. My life is on hold, we are held hostage by her rages. We are alone with no support. When The Dad is at work, it's me with the three of them all day long with no reprieve, no respite, nothing but dodging verbal bullets, RADsing behaviors, pulling therapeutic techniques out of my ass and trying to survive until bedtime. Then rinse, wash, repeat. At prayer during service, I raised my hand and asked that the congregation would remember my family as our daughter had just returned home from a hospital after three months. No one. NOT.ONE.PERSON. said a word to me during or after service.

Then a hummingbird came to the kitchen window, saw that the feeder wasn't there, looked directly at me and hovered and then went back to the window before flying off.

I sobbed and sobbed. In all of the insanity of this year, I didn't decorate my yard for summer, no plants, no wind chimes, no whirligigs, the weeds have overrun the lillies, my rose bush is dead and the humming bird feeders were never put out.

And yet, a year later, the hummingbirds were back, at MY window, counting on ME for nectar. Looking AT me as their source of food and hope. A YEAR LATER and a damn hummingbird knows I'm reliable, can be counted on, will be sufficient to extend a hand of compassion and caring. A hummingbird.

NOT my 11 year old daughter.

And if we stay in this house forever, the hummingbirds will keep returning.

And my daughter?

I don't know if she'll still be my daughter next year. I don't know how long I can be a caged bird, living a paralyzed, hostage lifestyle because of her mental illness. I don't know how long I'll allow her to do it to my husband, my marriage, my other children, my dog.

Because that hummingbird reminded me, Sissy's life is not more valuable than mine.

personality test

I'm a O41-C96-E83-A96-N3 Big Five!!

Click on the banner at the top of the personality quiz page to take your own quiz.

Rule change, Same Results

nope. she's not going to make it. full on rage tonight requiring a call to her IFI team who asked if I wanted to call 911. Then informed me that she almost qualifies to reenter the hospital with her home behaviors thus far.

11 days.

Tonight we decided to quit asking her to be honest and admit to the voices. We're trying a new tactic. We're just nonchalantly and lackadaisically saying, "eh, so you hear stuff and see stuff. No biggie. It happens." Taking a more direct approach of acceptance instead of giving her the option to deny may be more healthy in the long run.

Another new tactic of not engaging. She sleeps to deflect or avoid, we say "you were sleeping" and she rages that she wasn't. Game on.

The No-Engaging tactic.
MOM: You were sleeping. Color change. [1]
SISSY: WHAT!!! No I wasn't!
MOM: (without making direct eye contact or speaking sternly) The rule is, if your eyes are closed, your head or body are down or if you are wrapped in a blanket, it looks like sleeping. So it is.
SISSY: BUT I WASN'T! I WASN'T! I ONLY HAD MY EYES CLOSED!!!!!
MOM: You know the rule. (walk away)

If she continues to say provoking statements to try to get me to engage, I just parrot the rule.

Which of course is exactly what happened today. And after I repeated the rule a second time I added, "you supper is on the table, please come eat."

She came to the table and then when she got there began tantruming.

MOM: The rule is no tantruming at that table. Please leave the table and find a quiet place to settle down.

SISSY: WHAT?!? I'm not tantruming!!!

MOM: If you are crying and shouting at me, it is a tantrum. Which room are you going to go to so you can settle down?

SISSY: I'M NOT I'M NOT! (head on table, sobbing hysterically)

MOM: Can you pick your mp3 player, a lovey (stuffed toy), or a blanket?

SISSY: NO!!!! I'm NOT TANTRUMING!!!!

MOM: I'm sure you have to use the bathroom by now, you can settle down that way, splash water on your face, brush your hair.

SISSY: NO! NO! NO!

MOM: OK, I'm deciding. Please use the bathroom.

SISSY: NO! NO! NO!

MOM: (moving chair she is seated in away from that table but not angrily or forcefully) To the bathroom.

SISSY: FINE!!!

She proceeded to the bathroom clamly, I thought hey, that worked!

Then nuclear meltdown.

one and a half hours later ...

still, the "no engaging" language is better. Instead of calling out her behaviors or her lying, I'm just reciting over and over like a robot what I would like her to do, phrasing it as "rules". I'm going to continue using the no-engaging tactic because it's easier on ME. If she can't deal, whatever. I have to be able to get out of bed the next day and do it all again so the rules of the game have changed. Now it's about how I deal.

And just so my Orlando peeps in my house for 2012 are in the know: if your eyes are closed, your head or body are in a supine position and you may or may not be snuggled in a blanket, I WILL say that you were sleeping. Fair warning.

[1] the behavior model we are following at the hospital. Since sleeping is such a huge issue for her, we are allowing one two hour nap a week and then giving her a consequence for naps after that. It sounds harsh but the bigger picture is that her napping has become a way for her to dissociate so it's not a healthy coping skill. In addition, with so many nighttime issues, too many daytime naps interrupts her ability to sleep at night.

Pie in the Sky

It was a challenging weekend with Sissy but we got through it. Four day honeymoon period. Heck, at least we got four days. I was expecting her to launch into full tirade ten minutes in the door. Even with her lousy weekend, I'd have to say the fires I've been putting out have been started by the rest of us.

WG is mad, mad, mad. Holy cow, she is furious. I don't blame her. It's all out of her control and no amount of explaining that Sissy's return is out of our control too is enough to help her seven year old mind sort it out. Truly, if she was older than Sissy and AB, it might be possible for her to cope with their issues but it is so difficult to explain to her that even when they are "mean" it is due in large part to their challenges and not necessarily a direct reflection of their opinion of her. Shoot, there are ADULTS that can't process these thought and I'm asking a seven year old to wrap her brain around it AND to express her anger in appropriate ways in the process. I could say it again but it won't matter: where the heck is the support for the NT siblings?

Right now, WG is attending sessions with my therapist. Next week she goes to the psychologist with the other two to determine if she's medically suffering PTSD as I suspect. (It's one thing for a mom to say it and for a therapist to agree but it's a whole other ball of wax when the psychometric evaluations prove it.) Mom prescribed: WG is taking a sublingual melatonin tablet to address her sleep issues and a daily vitamin with iron because her appetite is so poor which I suspect is anxiety or PTSD related.

AB has needed lots of vistaril, lots of compressions and sensory integration, lots of naps, love, patience and a soft, positive voice. He has a half life in public settings of about 90 minutes which is half as long as usual. I think he's had a manic/depressive cycle, just very mild. The increase in his resperidal has been helpful in keeping the extremes of his mood swings in check. But momma's always know when the meltdowns are coming and so far, I've managed to catch them before he lost his stuffing but I'm not sure how long that's going to work before he has to blow off the steam and get it all out. The last time he had a rage that required physical restraint was February. He's long overdue. Throw in the emotional and traumatic events involving Sissy and it's hard to be anything but empathetic for him.

It's strange to talk about AB's rages and know that I do it with a completely different emotional affect than when I talk about Sissy's rages. It boils down to the RAD component. AB inherently trusts me so when he gets to the point of coming unglued, he trusts that I can help. At first he resists but then he quickly acquiesces and accepts the therapy I'm offering him. In addition, I can predict his weak spots and when he's a volcano waiting to erupt. I can also identify his triggers BEFORE they've even triggered him. AB's issues are like a predictable tide. I know that after there's a high tide, he'll have a low tide and that you can set a watch by it.

Sissy's rages?

...

It's so hard not to cry about them. To process them, to let them roll off my back, to not be engaged in them, to not be traumatized by them. Just typing these words, my heart rate has increased. *taking deep breaths* The only explanation for the discrepancy between the two is RADs. If,if,if, I say. But I have to stop that anxiety train. What's done is done, we can only move forward.

I haven't touched my quilting in more than a week. It's been tough to get back in pace with managing three. Not kidding, four would be easier. Three is a waltz and if I miss one beat, it all comes tumbling down. My own panic attacks have been managed with some herbal tablets - Ignatia Amara - which has been amazing, much better than the prescription meds. I've also learned that the commercial that says "depression hurts" isn't kidding. I'm taking OTC pain relievers at night with my prn so I can sleep better. I highly recommend it.

I'm taking slow, deep breaths and trying not to get ahead of myself. It's hard. My mind is racing with ideas, plans, thoughts, concerns and the irrefutable truth that at age 11, we have hit the ceiling in what is available in therapy, medication and placement options for Sissy. There just isn't anything else beyond securing DD assistance for her and even then, treatment, medication and placement options won't change. It just helps her move to services better when she's an adult. Keeping only MH diagnoses on Axis I severely limits her because MH is considered treatable and manageable. For some, that is a realistic expectation. For Sissy, it's pie in the sky.

Perhaps I can convince The Dad to do a post about how HE's doing. I won't presume to speak for him, although he would tell me I could articulate it better than he could anyway.

Tomorrow the IFI mayhem begins. We have three appointments with them in the next three days. I'm going to be educating them about the use of mandalas and puppets to get Sissy to talk.

Stretching Grace

It takes GRACE to be kind

When faced with hatred.

 


Stained Glass at local historic Jesuit church

It takes GRACE to love

When you are despised.

grace (noun)
1.a : unmerited divine assistance given humans for their regeneration or sanctification b : a virtue coming from God c : a state of sanctification enjoyed through divine grace
2a : approval, favor b archaic : mercy, pardon c : a special favor : privilege d : disposition to or an act or instance of kindness, courtesy, or clemency e : a temporary exemption : reprieve
3a : a charming or attractive trait or characteristic b : a pleasing appearance or effect : charm c : ease and suppleness of movement or bearing
4. used as a title of address or reference for a duke, a duchess, or an archbishop
5. a short prayer at a meal asking a blessing or giving thanks
6. plural capitalized : three sister goddesses in Greek mythology who are the givers of charm and beauty
7. a musical trill, turn, or appoggiatura
8. a : sense of propriety or right b : the quality or state of being considerate or thoughtful

GRACE makes it possible to find beauty

Among thorns and brambles.

More glass from historic church

reminds me of dresden wheel in quilting

If you try hard enough

You can stretch the limits of GRACE

to the least among us.

grace(verb)
1: to confer dignity or honor on
2: adorn, embellish

How often has GRACE 

been extended to you

without  request for a return?

Stained Glass at Jesuit Church

For Grace are ye saved through faith, and not of yourselves it is the gift of God not of works lest any man should boast. Ephesians 2:8,9

If GRACE alludes you

perhaps it is because you have

alluded being found.

U2 - Grace

In this life, GRACE makes beauty

out of ugly things.

Our dog, Grace

GRACE finds goodness in everything.

The alter at a local historic Episcopal church

Give a little GRACE

Even though it be thrown back in your face.

More glass from the Episcopal church

Stretch GRACE beyond 

your limits

Because GRACE 

is limitless.

Ill prepared

New IFI supervisor said, "off the record? i don't know about any of this stuff and I feel ill prepared to help but if you're willing to teach me, I'm willing to learn and work with you."

And I said, "off the record? I don't want you here, you're only here so I have a safety net in case she rages and someone wants to report me to CPS. But I'm glad to teach you and share any leads or contacts I get." Then I handed her five business cards of area doctors that work great with challenged kids.

Then we shook on it.

She said that I was probably the most educated parent she's ever dealt with. That half the problem is dealing with parents that are clueless and unwilling to do the work and added that some of my frustration with the system might stem from the fact that the system is used to working with reluctant, uneducated parents. We talked about the broken system, which she is equally appalled about. I told her we need day respite. She says she can't find any for ANY of her clients.

She called tonight to say she's not coming in the morning, APS hasn't approved IFI services yet. *roll eyes* Then she asked how it's going. I said, "well, Sissy is still doing ok, no rages yet but I'm having trouble transitioning, which is new for me and catching me off guard."

Sissy was yellow twice for behaviors (disrespectful and hygiene) but has stayed on green otherwise [1]. And it's not that she's being bad, it's just that after 97 days, I'd forgotten how much RADishes talk, as though they're afraid of silence. And good God, she doesn't talk about ANYTHING just babble babble babble about random, unrelated things. Oh, and the last word. Crap me a brick, this kid has to have the last word about EVERYTHING, even in a conversation she isn't a part of.

I'm keeping my "ignore it all" blinders on but it's hard to not want to go crazy or pull my hair out by the end of the day. It's Chinese water torture. Worse, the other two have been at VBS every morning this week so it's just been me and her in the morning which I thought would be a good thing- you know, bonding and all.

Shoot me and put me out of my misery. She doesn't know how to self-moderate or actively engage without direction, redirection, encouragement, focus, rinse, wash, repeat, ad nauseum. At the Y pool today, she was babbling, babbling babbling and I just swam away under the water to the deep end because if I didn't, I knew I'd have gone crazy on her.

And the supervising. I'm exhausted! WG and AB were self-contained. They would play or get along or whatever without the need for me. I can't take my eyes off Sissy for two seconds. Showering? Crapola. I haven't had a chance to shower until The Dad comes home every day because I'm so tired I'm sleeping through my alarm and then he's gone to work and I can't leave them unattended for the ten minutes to shower. Not kidding, infants are easier to manage! Literally drove me to a panic attack yesterday evening from all the noise and babbling and supervising.

The sewing machine has gathered some dust because by the time they're all in bed, I'm beat. Check email? pbft. Facebook? Blogging? Ugh.

Plus all the phone calls and appointments and paperwork and faxes and what not trying to get Sissy situated back in our care. STILL don't have school records. I may be driving up there next week to sit in protest until I get them. Oh, and our new IFI supervisor didn't know what CBAY is. So we haven't even started that. Ugh. Explaining all this to the IFI super, fun times.

But here's a funny at least. Sissy emerged from her room this morning looking like a clown. I swear, RADishes do it on purpose. They put on absurd outfits for the attention. Well, I didn't give her any beyond, "bra, deodorant, hair" when I looked at her. Didn't flinch, didn't let my face betray any emotion. Then, in the parking lot of church almost an hour later, taking AB and WG in, she exclaims, "I LOOK LIKE AN IDIOT!!!!" Still, I said nothing. Didn't even acknowledge she spoke. But she changed some of her outfit when we returned home. And all I said was, "please put away your shoes." Which she did. Without protest.

Oh and another funny, I forgot how much RADishes are in pain. She must have hollered "OW!" about thirty times today. Everything just kept hurting her. Still, I didn't flinch, didn't speak, didn't acknowledge. Occasionally when she didn't see me, I'd look to make sure she wasn't bleeding or bruised. But if an outsider was looking in, I'd have appeared as a callous, heartless fiend and she would have been a klutzy, bumbling fool. Of course, we all know the truth is she's a RAD and I'm her therapeutically parenting mom.

The not so funny is that we were having a candid discussion about some of the behaviors and illnesses she saw while at the hospital. I nonchalantly brought up the subject of hearing voices, noises, talking to people that aren't really there. Her interest was piqued. She said things like "maybe the voices are actually angels." and "maybe they really ARE there and other people just can't see them."

I explained that it's a brain playing tricks, that therapy and medicine can help and that it's nothing to be ashamed of or scared of, that if it should ever happen to her, she should always feel safe to talk to me, her doctor or her therapist about it. She denied, denied, denied, averted her eyes, tried to change the subject with an injury on her toe and then I asked her pointedly, getting her eye contact, "Does any of that happen to you?"

"NO!" but her pupils dilated as she said it. Big as saucers.

So I added, "well, just in case, I'll never make fun of you, I'll just try to help. You know that, right?"

And she was off on a deflect tangent, fiddling with her toe and complaining that the staff at the hospital didn't take care of it like she wanted them to, blah, blah, blah. I said, "that's a sneaky little trick."

"What?"

"Changing the subject because you don't want to talk about something."

"oh. yeah."

I got up and fetched her a band aid for her toe (it actually was a little sore) and dropped the subject.

I think I'll reiterate what her IFI super said, "off the record? I don't know about any of this stuff. I feel very ill prepared to help."

[1] we're following the hospital's model for color levels based on behaviors. if you'd like to know more about it, email directly from my profile page.

Back to Five

I didn't think I would survive yesterday. Seriously, I thought it would be the end of me and our family. Many, many thanks for all the love and support.

In her discharge survey, Sissy reported that she hasn't learned anything while away at the hospital, that she anticipates returning to her previous behaviors. *sigh*

And of course, the hospital was unprepared with the appropriate paperwork for her discharge. School records? We still don't know if Sissy will be repeating fifth grade or if, after so many years fighting, she'll finally get an IEP so she can go on to sixth grade? The jury is still out.

How is she? How are we?
She is honeymooning but I'm keen. I can hear it in her voice and see it on her face. It's all right there, just under the surface. Earlier today I was predicting her to return to "normal" by tonight. She's still maintaining so I'll bump my guess back 12 hours. Tomorrow morning. Hygiene? Good gosh, I just don't understand how a child of her age can personally tolerate being so grimy, how she can not even notice? Or is it that she doesn't care?

And we are? In shock, numb, bewildered, angry, panicky, afraid, anxious, all of the above.

Tomorrow morning, we meet the new IFI team.

hooray

i'm

so

...

excited...

*blink blink*

Loop Holes, DD & the Paradox of MH: Education Part Two

Yesterday I spelled it out. For Mental Health (MH) there isn't much we can do. Are there any loop holes?

Loop Holes:
My psychiatrist said a year ago that Sissy needed long term care. Her first IFI team supervisor was talking about finding a group home. Her CBAY supervisor was researching the laws on ungovernable minors. In other words, if the professionals managing your child's case have concluded and documented that the child is best served in an out-of-home placement, it's like a backdoor legal loop hole that prevents child abandonment charges for the parents.

If I call up my county's child protective service office and say, "i can't deal, come get her" it goes bad. VERY bad.

So why not pursue this loop hole?

Ah, yes. The million dollar question.

a. DBHDD in an uncouth manner informed me at the audit several weeks ago that "private psychiatrists like to say all the time that a patient needs long term care but that's not how mental health is run anymore." Translation: therapists trump medical professional opinion. In fact, in our state, part of some of the new MH initiatives (see yesterday's discussion) pdoc's are no longer credentialed to put a child in acute or long term care. Only a "core provider" recommendation, using a CAFAS score (see acronym dictionary) is acknowledged by APS review boards.

b. No therapist is going to risk their job by telling the state that their recommendation is that their client be put in a long term facility. The supervisors heads will roll and the state will strip that facility of the credentials to bill medicaid for services. Ultimately, threat of termination and being black-balled by medicaid will prevent therapy services like IFI teams from putting such a recommendation on paper. They might write, "the parents are unwilling to continue MH services and are requesting long term placement" but as you can clearly read, that statement is a reflection of the parents being unwilling to use services, not the child.

c. Ungovernable minor laws: ah yes. Proving to the state that your child will not be parented. First question: does your child have a history of criminal activity or truancy? If I say no (i'll come to that in a minute) then I have no case.

And why do I say no to that question? Because up to this point, I have provided such a structured environment for Sissy with staunchly supervised time and limited access to any opportunity that might bring her harm (including an alarm that goes off if she exits her room at night and do like other RAD kids do: raid my fridge or go online and chat with sexual predators) that she hasn't done anything criminal. Truant? Let me start with, I don't want to go to jail. In our state, six tardies without a doctor's note sends the truant officers to my door. Who's liable? Sissy? Oh no. Not Sissy. ME. What about running away? I always call her bluff. She never does it (give it time, she's only 11). Access to people that do drugs or drink? Pbft. No one is friends with Sissy. She's never invited over. Bottom line, for now, I've created an environment that prevents criminal and truant behaviors. Ungovernable therefore, doesn't apply.

Developmental Delay (DD):
Typically considered at IQs of 70 or below (that is the mental retardation level), it also includes ASDs and genetic disorders. Sissy's charts have jumped around for more than a year with PDD-NOS, which is considered an ASD. She has a few facial markings that suggest a genetic or developmental component. Her IQ composite is just under 100 (average) but there is a 16 point differential between her verbal and nonverbal scores putting her nonverbal just one derivation above MR. The explanation for this disparity? Her psychologist was unable to give a definitive answer.

Sissy has had EEG's, a CT scan and some neurocore work. Those tests have not shown brain damage. However, we've never done an MRI to rule out FASD, an enlarged limbic system or a truncated hypothalamus.

My plan is to continue with IFI and CBAY for now while doing the ground work with her psychologist and psychiatrist to rule out or prove a possible DD issue. Then I'll apply for the DD waiver.

Are there more resources for DD kids? Yes and No. Our state has bankrupted two of the waivers for DD kids but there is still one that Sissy might qualify for. Is hospitalization and/or long term care more available with a DD Dx? Sometimes.

What do I think? I think that after four years of only MH services with Sissy's behaviors getting worse, not better and menses hasn't even begun yet, we'd be fools to continue on this track blindly without being certain that she does not have a DD issue. I think she does. I've been saying so for years.

The Paradox of MH:
If a child has cancer, indigent or not, the child is provided with the appropriate medical care to help that child heal or at least make the child comfortable for the rest of his/her time. People, family, friends, communities, agencies, supports, hospice, churches, organizations, corporations, and more support these diseases and the families that go through such tough ordeals.

If a child has a mental health issue there are only chirping crickets. From everyone. Think about it? How many 5K runs have you heard about to raise dollars for bipolar research? What corporations have made charitable contributions to support mental health facilities? What organizations are out there educating the public at large about mental health? How many commercials have you seen that list hotline numbers to call if you or someone you love is suffering from a mental illness? How many lawyer commercials filing lawsuits against doctors or hospitals or agencies for neglect or malpractice have you seen? None.

Like leper colonies in the Bible, persons with mental illness and their families are exiled and left to die. Extreme words from a mother with an ill child that is frustrated with the system? Or truth? Both.

I've said it many, many times. Prayed for it even. If Sissy had DD issues, if she had a visible disease, if she required convalescent care, if she suffered from a rare genetic issue our story would be incredibly different. AB? I can parent him and ten others like him. Sissy? I've got no words ... and neither, as it seems, do the mental health professionals.

31 hours

It's really hard to function today without the inevitable breathing in my face like an invisible fire breathing dragon. Sissy comes home tomorrow. Today is my last day of peace.

Here's a plus: Wii Fit says I'm only 34. Huzzah. I feel like I'm 64.

The therapist said "well, it's best to be positive. Perhaps Sissy will surprise you with what she has learned here."

So we asked Sissy what she learned. She hasn't learned a dang thing. We tried role playing. She blanked. "what? huh? what was the question?"

She told the therapist that "the staff was lying on her" about her sleeping behaviors. Right. Because a team of psychiatric staff is going to gang up on an 11 year old and lie in her charts about what she's doing.

When we asked the therapist about the fact that Sissy has continued to verbally state that she feels safe there, that she feels she'll return to her behaviors at home, the therapist said, "Unfortunately, statements aren't considered. Only behaviors. And her behaviors do not show that she is a threat." Isn't that a curious thing? Homeland Security will land your ass in jail if you are angry at a guy for banging up your car in the parking lot of the grocery store because you were verbally threatening someone and could therefore be conceived as a physical threat. But if a PSYCHIATRIC patient makes statements of intent while IN PSYCHIATRIC HOSPITALIZATION, those statements are ignored and not considered as applicable when considering behavioral risks.

When we told the therapist that we were concerned for our safety, she said, "I can hear your concern. Unfortunately I hear many stories like yours." Then she asked again if we would consider relinquishing custody.

I explained that in our state, that is VERY bad for the rest of the family. It is considered abandonment, we are investigated for child abuse, the other two go to foster care ... *trying not to cry*

We told the therapist we are getting a lawyer, that it's about protecting the four of us at this point. She said she understood but beseeched us to be positive about any progress Sissy may have made, to at least give her a chance to prove herself. We told her that past history has proven otherwise.

The therapist asked about an appeal to medicaid. We explained that the family therapist from the hospital had every intention of doing so but since she has been out on medical leave, we feel like the ball has been dropped in our daughter's case. The Dad reiterated that if an appeal could have been made but was not and Sissy harms herself or someone else, that a lawyer would be notified of the negligence.

Having talked to the new IFI supervisor the day before, she shares our concerns, that we'll be calling 911 on Sissy before the IFI team has a chance to do their intake on Wednesday morning.

Here's the scoop for others reading this story and wondering how to dodge the same path:
1. APS medical review boards, such as we have in our state, are in charge of deciding how state medicaid dollars are spent. Ultimately, it comes down to the dollar. [1] Is your child ultimately going to cost less in a facility or at home with community services? That's easy. On paper, it's at home, regardless of what the medical documentation says. APS covers their butts by reciting criterion for placement.

2. criterion for placement:
a. behaviors that have occurred within the last 30 days only.
b. behaviors, not statements or verbal threats
c. actively suicidal
d. actively self harming
e. actively threatening harm to others

3. Sweeping changes in mental health
the states are being bankrupted by medicaid, disability and social security. In most states, the average is 10% of the population suffers from mental health or developmental delays (or in my children's cases, both). But that 10% is costing hundreds of thousands of tax payers dollars. If you live in one of the poorer states in the nation or if the politicians in your state have misappropriated funds either through ear-marked legislation or poor budgeting, then you have a budgetary recipe for disaster.

ERGO: states are making prettily worded changes to mental health so they can justify closing state mental hospitals. Legislation is being passed right under our noses that says children under the age of 13 are best suited in a home environment regardless of their condition. Initiatives are being created to prove the point. In our state a 2011 initiative was to keep ALL children at home and that RTCs would be nothing more than short term/acute care facilities. There are no more long term state funded hospitals. In fact, our state is actively closing the facilities for adults as well. The legislators all say that it is based on research, that DBHDD patients are best served in their local communities. Except that most local communities do not have the services. And worse yet, the pay in those jobs is so piss-poor that they can only hire moderately adequate therapists who for the most part, have no friggin' clue.

4. relinquishment
It's a joke to think relinquishment provides a child with appropriate services. In our state, Sissy will just be put in foster care, which may or may not be a therapeutically trained place and put up for adoption (in the meantime we may or may not be liable to pay the state back for that foster placement). Along with the 2011 initiative, our state made group homes only available for ages 13 and older, with most of that population represented by juveniles with criminal histories. In other words, STILL not an appropriate placement for Sissy. Again, as with foster placement, we may be liable to pay for group home even after relinquishment. bottom line: that doesn't get Sissy the care she needs. In fact, it sets her up to age out of the system with no support, no advocates, no family. She'll go to drugs, alcohol and sex. Given: she may do that anyway while in our care, but the percentage of that happening is marginally lower.

5. Private vs. State facilities
If your state runs an APS medical review board to manage medicaid dollars, it requires a civil action lawsuit for the state to do a case-by-case consideration of using state dollars to pay for an out-of-state placement in a PRTF licensed facility. The hurdle is proving that an out of state placement will provide better care than the in-state hospitals while the state of your residency argues in court that it is a lateral move, that there is nothing more to be provided that your state hasn't already done. And if you've refused local community resources in any capacity, the henchmen will have your head.

Private facilities are not PRTF licensed. Here's where the rubber meets the road. Several months ago I called more than 40 national facilities trying to find a placement for Sissy. In a cold call with admissions with all but one, I was told that Sissy is too severe for their programs. Meanwhile, the state continued to tell me she wasn't severe enough for a PRTF. I didn't understand the hang up.

The one private facility I called I managed to talk to someone that was kind enough to be honest. He said that state facilities will NEVER provide adequate services for children like Sissy but private facilities will never be billable through medicaid because they are not PRTF licensed. Bottom line, he said? Pay out of pocket. And if you're broke, well, that's really sad. And if you've already spent your life savings on your child and are broke, even sadder. He said, "get a lawyer."

6. What's a PRTF?
PRTF facilities provide 24/7 nursing, psychological and psychiatric services. Private facilities do not have that kind of staff on site. Most have a medical team that is "on call" and the staff are trained to dose medications. In private facilities, children requiring more strict medical care are scheduled appointments and bussed to those appointments. The staff managing their unit then follow through with doctor orders. this is why medicaid won't pay for them. Medicaid, and in particular, APS review boards, do not acknowledge these facilities as "medical facilities" and therefore they are out of the requirement to pay.

7. In our state, having talked to a woman from kidlink dot net, we are in a particular damning situation. As soon as I said our state, she sighed and said, "oh dear. there isn't much I can do for you. I'm sorry." Unlike other states that are more willing to be supportive, our state, ranked 8th in the nation as the poorest and is in the top ten for the percentage of the state population that suffers from MH, DD, or SA only has two major metropolitan areas of tax payer dollars to support the entire state population. As a mostly rural state with an unusually high tax burden of disabled, indigent persons and a regrettably small budget, there is little that can be offered. The DBHDD region we live in is the largest but is second to last in state budget allocation of funding for services. What's worse, when DBHDD began restructuring under the "new initiatives" in 2007, many of our resources were sent to the metropolitan areas of the state, both of which are three hour drives from here. In other words, what I've been screaming for the last four years is spot on truth. There are no other resources available to us that will benefit Sissy.

8. Move?
Moving is another can of worms. First, let's start with the fact that I have a SECOND impaired child that is thriving in this community. Moving would uproot him and put him in crisis. Second, The Dad's business is a local business. All of our clientele is here. Moving requires us to sell the business (in a flagging economy) and restart somewhere else. It has taken many years to build the clientele we have and beyond the SSDI we get for AB and Sissy, it is our sole source of income. Third, we could move to a state that has written laws the protect us from being forced to relinquish custody of our special needs child. But it takes months to get on the state medicaid program, find physicians, etc. I can't pay for the thousands of dollars of medications Sissy and AB take every month. Six months of waiting to get back "on the system" would be unbearable.

9. Private adoption
Oh, now there's a kitschy idea. On my own, try to find a family to adopt Sissy. Hrm. Without naming names, I have friendships with several women that have done this, or tried. If you think our story is harrowing, you haven't heard ANYTHING.

How can there be such a disparity between therapeutic and psychological opinions, state budgets, private facilities and the grappling of parents to provide adequate support for their children while protecting themselves and their other children? How do we prevent double jeopardy (abandonment charge if we relinquish custody, failure to protect charge if she hurts AB or WG)? How do we live a functional life with a child that will never be functional? How do we get restitution for doing a "good deed" by adopting a challenged child only to discover that we're on our own and that WE face criminal liabilities, not the birth parents that harmed her to begin with? How do we create a future for Sissy that doesn't repeat the pattern over and over with unwanted pregnancies of more challenged children that are abused in her care? How do we educate the public without becoming cynical? How do we overcome the incredible loss of relationships with people that don't understand what is happening to our family and to our daughter? How do we find therapists that are actually more knowledgeable than we are? IS there such a thing?!?! How do we still have faith in a higher deity that seems to ignore our pleas for help? How do we ask church for help when they don't understand mental illness, when clergy aren't even properly educated about it?

All I wanted for Sissy was a better future than her birthmother has.
All I wanted for The Dad and I was a functional family.
All I wanted for me was love and happiness.
All I've gotten is pain.

31 hours and Sissy will be through my front door and I have nothing more for her than I had when she happily and gaily left here 97 days ago.

[1]in an effort to understand the many nuances of various mental health, substance abuse and developmental delay diseases, i watch many documentaries, reality and talk-show programs on these topics. Most recently, in a Hoarders episode, the narrator pointed out that in 15 years, it has cost tax payers upwards of $500,000 dollars to support just ONE hoarder. The program lists that there are more than 3 million hoarders. Yes, mental illness is an enormous tax burden. Yes, I acknowledge that Sissy is one too. But how much more of a burden will she be if she doesn't get appropriate care NOW, when it matters, so we prevent her from having criminal offenses, drug and alcohol addictions, STDs requiring medical intervention and offspring with equally damning mental health and developmental delays?!?!? I say the bottom line is the dollars spent TODAY save tax payers hundreds of thousands of dollars LATER. APS doesn't agree. They're looking at what is currently in the state budget, not what they'll have to pay later. Perhaps, they counting on the fact that a child that is suicidal at age 9 is more likely to die prematurely of a self-inflicted injury, overdose, criminal or domestic violence or any of the many other preventable premature deaths if a person lives a safe, healthy lifestyle?

speaking volumes without saying a word

My lilies aren't blooming, they been choked out bythe weeds I didn't tend to.  My roses have stopped too.  Probably owing to the severe drought conditions.  I didn't even bother with my tomatoes this year, I had a feeling it would be a scorcher and therefore my tomatoes would have been money lost, not a bounty of fruit for the effort.  Our backyard looks like a wasteland.  I'm afraid if we tried to mow the weeds, it would catch fire.  I'm afraid if we rake the pine straw, there will be nothing but dirt left on the ground. I haven't even filled my humming bird feeders. In this dry heat, the ants will be horrendous.

But today I hung a door for the first time. AB and WG have earned back doors with locks, a privilege that was revoked seven years ago when Sissy and AB, then 4 and 3 in their various stages of delayed development and mental health concerns, were slamming the doors and injuring a crawling WG. Curtains have been up ever since. With the return of Sissy approaching fast, my immediate resolve was to provide protection and a sound barrier for AB and WG. The new safety plan is for them to go to their rooms and lock the doors. I have the pin to unlock their doors from the outside. Tomorrow I'll hang the other door. That's a lot of work! Plus I was afraid the power screw driver would run out of battery life before I was done hanging the second door.

Many phone calls, many notes, many, many things to do and appointments to schedule. With Sissy gone, my phone never rang. With Sissy's return, it hasn't stopped. Everyone wants to talk about Sissy. Which is ironic, because I don't.

The hospital says they can't send her home to no services. They did their research. Said, "gosh, you weren't kidding, you really don't have services there. Can you move?"

Seriously. *crickets chirping as I stare them down and blink once in five minutes*

Thus, so it isn't written in the documentation that we are non compliant parents, we are returning to IFI and CBAY waiver, even though they were in effective last year. Do I want to do this? Heck no. Do I see the point? Heck no. Do I want some social worker riding my butt because I refused an "available mental health service" for my child? Heck no. Do I really want to tell one more team of therapists all about my daughter's history? Heck no. Do I even care at this point? Heck no. What choice do I have? Surrendering rights, the other option the hospital gave us? Heck no. In this state that is NOT a good idea.

I can't think. I'm numb. My heart is breaking. My anti-anxiety meds didn't work last night and I was unable to sleep because I was panicky all night. My greatest concern is that the four of us haven't recuperated enough to deal with Sissy's issues. I'm afraid it will push me over the edge. I'm afraid it won't matter to mental health professionals managing her case.

I've never let my yard look so pitiful. The visual representation of my home and my despondency about things I typically love and revel in, speaks volumes.

SEVEN!

I can not believe my baby is seven. It still feels like yesterday when I was in the delivery room hearing the doctor announce it was a girl as I prepared to cut the cord. Such a privilege to have been there for her birth.

She wanted chocolate iced brownies with funfetti.

I ate some, gluten be darned.

Her Noni bought the fabric and I made the dresses!

That was fun - a gift from both of us.

A sneaky surprise gift.  She had seen this dragon pool towel at JoAnn's Fabrics and wanted it.
I went back the next week while she was at school and bought it!

 Gracie watched intently as WG unwrapped all her gifts so she earned a hug from the birthday girl.

June 13th

Hospital finally called.

She discharges next monday ... to no services.

oh, and since she failed the fifth grade state test, we don't know if she will be repeating or not because the hospital still hasn't written her an IEP.

or determined if she's DD or not.

and they said they "ignore her 'tantrums' and rub her back" and that this is their recommended therapy approach.

uh... "go f!ck yourself" came to mind but I played nice and said nothing.

I could use a showering of love, prayers and support starting RIGHT NOW.

Sneak Peak

I've mentioned a few times that I am making a few lap-sized quilts to auction in Corey's Christmas in July auction to raise money for Orlando. The items will be shipped to Corey and posted on her blog for the auction. Today I'm giving you a sneak peak at one of them.

The top panel of the Christmas Throw quilt

Finished size 46 inches x 65 inches

"Fussy Cut" [1]corners that have a different Santa in each (sorry, they're white Santas. It's hard to find neutral toned or dark skinned Santa christmas fabric!)

The back of the quilt which says "Holiday Wishes", "Peace" and "Noel" in red, green and gold

When I get the other panels assembled, I'll let you have a sneak peek at those too. And as I mentioned earlier, so far what I'm using is from my personal stash and from gifts that other readers have sent. The average lap sized quilt start-to-finish costs about $45 USD to make. If you are interested in helping with the fund raiser but don't think you will be making any purchases in the auction, I will gladly accept donations of scrap fabric, large scraps of batting and/or JoAnn's gift cards. If you like, I will be glad to send copies of receipts so you can be sure I've spent the money on these projects.

Long overdue, some pictures of WG's recital. There was a no-camera policy so I snapped a quick shot at the house on the day of the rehearsal and then while she was on the stage at rehearsal. (She's front row, far left) This is her tap costume. With all the hustle and bustle with the costume change, I forgot to get a picture of her in the ballet costume.

[1]"fussy cut" is a quilting term in which you cut fabric to get a particular shape, image, phrase or pattern to appear in the finished quilt after piecing. The first time I said it to WG, she was confused. "Mom, does that mean you go 'AUUUUGGGHHH!!!!' and make a big fuss and THEN you cut the fabric?" I laughed so hard I couldn't breathe because in addition to screaming like a wild banshee, her rendition of fussing, she shook her body all over in quasi contortions. Then added when I finally stopped giggling, "you know, how Sissy does?" Which made me laugh even harder.

Still no answer

i've got nothing today. I'm numb.
and my head aches after a sob fest pity party.

We still have no idea if Sissy is coming home this week. No word from the hospital. Our scheduled family phone session for this past Friday didn't happen. The individual therapist never called, nor did she return my call on her voice mail about the missed session.

June 6th is what Sissy was approved through pending the monthly review, which may or may not have occurred given that the therapist that handles the case reviews is out sick with no projected return date.

WG's birthday is on Wednesday. Will Sissy be home? No one knows. No one is talking.

And all I want to do is curl into a ball and cry myself into next year.

Stuck like a duck in the ooey gooey muck

The family therapist at the hospital has been very sick which explains the delay in response. The staff at the hospital had to scramble to gain permission to access her files and pick up the pieces. Apparently Sissy isn't the only resident whose case appears before the APS review board for approval. With any luck, this delay in preparing the documentation will grant us at least a week before the guillotine comes down (or with any luck, she is granted more time.)

There are so many things I WANT to do that I just can't do. It's not because my arms and legs don't work or that my brain isn't functioning. I'm just so numb. I really do have lots of research to share but just the thought of sitting down to type it all out makes me dizzy.

You should see my kitchen. Quilting projects every where, mid progress. Several of them intended to be completed and sent to Corey for a chirstmas in July auction to raise money for Orlando[1]. I WANT to do them, I ENJOY doing them but I'm ... stuck.

The other night I forgot to take my anti-anxiety med and I woke up at 4 am from a dead sleep trying to fend off a panic attack. My anti-depressant that I take in the morning makes me sluggish. Without the meds ... I really don't want to say how bad off I'd be without the meds. It makes me cry.

How did I get here? I feel so numb and so sad, so angry and so agitated all at the same time. I just want to move on, I want to be done with this insanity, I want my family to be whole and happy and have a future. Instead, I feel like we're stuck in purgatory indefinitely.

In a few minutes the phone is going to ring. I have to do a phone session with Sissy and her individual therapist since the family therapist is out ill. I chatted with her briefly the other day and at last week's meeting. I've learned some startling things about Sissy that the hospital knows ... and DOESN'T know (which is worse.)

#1 - Sissy's RAD has been diagnosed as inhibited type
#2 - They have added Intermittent explosive disorder to her list, apparently a rarely diagnosed mental health label
#3 - when asked if Sissy is really clueless and not able to draw connections to cause and effect (and therefore not culpable because it's a DD concern) or if she's playing dumb bunny so she can get away with things (which requires consequences) the only answer the staff has is "we don't know, we're unsure and still trying to figure that out"

ok, so after 90+ days, if trained psychiatric staff still doesn't know the answer to #3, how the heck am I supposed to know and more importantly, how am I supposed to parent her? No one can tell me. Furthermore, if she's really not drawing connections, if her brain really is that damaged, then standard mental health and behavioral therapy isn't going to be useful. In addition, if she's an inhibited RAD, standard RAD therapy isn't going to work either.j

so I'm stuck.

And for love, money, medication, rest, relaxation, prayer and meditation, I'm afraid I will be stuck for awhile.

[1] if you would like to help contribute to the cause, I will gladly receive your scrap fabrics or a joann's gift card to purchase supplies. Currently I have three quilts planned but if I get more donations, I will be able to make more. Just email me directly from the profile page.

Red 17, Spin the Roulette wheel!

It's hurry up and wait time again. We wait helplessly and without being given a voice to advocate for our daughter or ourselves. The APS medical review board that analyzes patient documents to determine eligibility for PRTF and consequently, allocation of state medicaid dollars reviews Sissy's case this week. Previously they have approved in 30 day increments. Her last review gave approval through June 6.

That means, by this time next week, I may be picking Sissy up from the RTC with zero supports at home. It also means we have to hurry up and celebrate WG's birthday before Sissy comes home because we don't want a repeat of last year's hell and torture.

Or, it could be that APS will grant her another 30 days.

If I could have my say with APS, a bunch of strangers sitting behind desks, wearing fancy clothes and only reading clinical documentation on my daughter, none of which includes the mental health status of the other FOUR members of the family the psychiatric patient resides with, I would say the following:

1. We need another 60 days to
a. write an IEP
b. evaluate her for DD
c. apply for the DD waiver or
d. reapply for IFI and CBAY if she is determined to NOT be DD afterall

2. We need another 60 days to
a. recuperate from PTSD
b. repair things in our home
c. get a lawyer pro bono
d. research PRTF licensed facilities in other states

3. We need another 60 days so
a. Sissy can begin to show her true behaviors, 90 days isn't long enough for her to let her guard down completely
b. Sissy can continue in the intensive CBT treatment setting
c. Sissy can continue to feel safe; not suicidal or self-harming because by God, my daughter deserves that at least!

What will we get?

No one knows. It's a damn roulette wheel. Most maddening of all? Her therapist has not spoken to me in two weeks, not even responding to voice mails or emails. We haven't even scheduled a family session.

My last post was a jumble of thoughts, a rant of psychotic proportions. I have actually some very clear thoughts and research to review but for today, I'm going quilting. Tomorrow, true to my natural ability, I will educate my readers because I know many of you need this information too.

In positive news, we have finished preliminary testing for AB and have determined that at this time, although he is indeed growing fast, he is still within the derivations of the mean. We will continue to watch his growth but his DD specialist mentioned that many DD kids will have rapid onset puberty, stall out and then finish much later than their chronological peers. Let's hope that is the case for AB who, at the moment, is dealing with the transition from school to summer vacation by stimming my mind into numbness. Someone get me duct tape, I'm going to tape this boy's arms to his body!!!

tomorrow - information, quilt pictures and potentially and answer about Sissy.