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

Monday, February 28, 2011

Fun with Pens and Markers

Marty was having a rough day. I told her it sounded so miserable that I was going to stick my head in the sand for her. She said she'd just as soon as bury herself up to her neck. Marty, this is for you!

I get to hand her the original on Friday night in ORLANDO! WHAT?!?!
Holy freakin' crap, I'm going to ORLANDO on Friday!!!!

If you missed the rainbows and unicorns flying out of my butt, here's the antithesis: That's The Way the Cookie Crumbles
AKA: The Chips are Down

Sunday, February 27, 2011

Fix This

Prose and poetry original works by blog author, copyright laws apply
Lately I've taken to imagining what life will be like later, when we're not in the throes of raising preadolescent, medically disabled children that are raging and screaming and metabolizing meds too quickly. AB is actually rushing headlong into puberty, pulling ahead of Sissy as if it's a race to the finish line. Sissy has stalled out and I'm finding myself desperately hoping she'll hurry up and get menses over with already. I've got it in my head that once she jumps this hurdle in her hormones she'll be moderately manageable because right now? Right now it's hellatious.

In my imagination, my house is quiet, peaceful even. If my house could talk, it would weep. All the anger and rage that has reverberated off these walls for the last few years would just seep through the sheet rock and puddle in pools of black tar on the floor. Then I'd get a shop vac and suck it all up and dump it down the drain, good bye forever, hate. Bye-bye scream fests. Adios primal rage. Au revoir head banging on the padded walls. Auf weidersehen psycho crazy crap. In my imagination, a soft, warm glowing light in the front window guides me home, to tranquility, to love's waiting arms, to warmth, to hope, to beauty.

In my imagination the sky is blue with wispy clouds gently floating on cool breezes and it's safe to smile at them. No one is going to scream at me for being happy.

In my mind the phone rings and I have a pleasant conversation without interruption and my conversation has NOTHING to do with doctors, medications, therapy, respite or waivers.

When I daydream of my future I'm preparing a meal for The Dad that is nutritious, delicious and enjoyed. No one is screaming that it tastes yucky, no one is vomiting it up at the table because of sensory issues. No one is screaming that they won't eat it, ever, that I'm mean for making them try it.

In the future I pretend that Sissy is all better and AB isn't stimming. I imagine that a fairy godmother has appeared out of thin air, waved a magic wand and suddenly The Dad and I are no longer solely responsible for their well being because we've done a good job and they are self-sufficient.

When I close my eyes, I've created something beautiful with my life. It's really all that I wanted in the first place, to live on this planet and know that the path I've lead has created more lovely things than ugly; that for knowing me and being a part of my life people are better, not worse. I see a gorgeous stained-glass tapestry of colors, something that takes your breath away and makes you say, "oh my," in a hushed tone followed by a sigh of "wow."

Then I sit at the table with The Dad and serve him breakfast with fresh coffee and he reads the paper and I thumb through a quilt magazine and we maybe play footsies under the table without even looking at each other or saying a word.

And I smile. A warm, slow, happy smile.

Then I open my eyes and i see a tornado barreling toward my house like a Tasmanian devil hell bent on destroying everything, roaring in fury that I shouldn't be. All I can do is scream back, my mouth opens spontaneously and an ungodly noise escapes my body. It looks like a toxic black tar.

My life is stuck in reverse.
I've loved someone and it's gone to waste.
The tears stream down my face
And it only gets worse.

Lights are guiding me away from home
Because there's no fix for this.
It can't be fixed.
It can't be undone.

This will mar my eternity.
I will never know what I'm worth
The rage has shattered my stained-glass tapestry
Into millions of lead-filled shards hell bent on hurting.

And I scream with the walls
In silent horror
The depth of pain and despair
Would obliterate the dry wall
Returning it to piles of dust;
A cataclysmic explosion of pain and anguish
Reducing all tangible things to microscopic particles
Floating on the wind in suspended animation.

I've got neither what I want nor what I need.
I'm so exhausted but I can't sleep
I've tried my best but I'll never succeed.
I can't replace what I've invested.
I've gone too far and I can't go back.

The rage destroys what I construct
Every chance it gets.
The lights lead me away
This can't be fixed
It can't be undone.
I'm stuck in reverse.

I close my eyes and i try to sleep.
I block the rage that engulfs this reality.
I see a light that guides me
To a home, a future I'll never know.
I smile a slow, warm smile of happiness in defiance
As I sob a torrent.

Thursday, February 24, 2011

Hijacked by Rainbows and Unicorns!

OH DEAR! It seems some rogue blogger hijacked my blog and started posting insane theories about conspiracy and government manipulation and weird vaccines and pharmaceutical companies running amok! Rest assured, I've been perfectly well, thank you. There is absolutely nothing wrong with my life, in fact, it's so fine and dandy that I have rainbows and unicorns flying out of my ass [1] all day long!

 full size color prints available, email blog author for details. 
Laminated, a set of four would make excellent place mats!

Really, my butt is SORE. Been sitting on soft cushions all day! All kidding aside, I don't wholeheartedly ascribe to any of those theories and speculations however, it bears mentioning that all that glisters is not gold. [2] In other words, as parents and/or guardians of challenged children, regardless of the challenges or how those challenges befell them, it is imperative that we remain vigilant advocates for their causes.

Some suggestions:
#1 - convince your child's therapist or therapy agency to comp their time, then start a support group that is attended by a mental health professional that is willing to offer behind-the-scenes advice AND listen to the parent voice
#2 - attend as many local and state parent forums as possible to stay apprised of available resources, agencies and changes in politics
#3 - keep a contact list of emails, phone numbers and websites for your local representatives and senators. Know what district you're in! Know where your representatives offices are located so if you needed to, you could show up and talk to a human.
#4 - bookmark the website for your state's mental health department. review it monthly for changes.  Do the same for NAMI and MHDDAD
#5 - keep your ears open to news and events that are occurring in your state in regards to budget, restructuring and how it all affects mental health
#6 - be a canary - sing your song to ANYONE that will listen. you never know who will have a tip or a contact that will get you to an open door you didn't know existed
#7 - keep your nose clean and your reputation within the community in tact. the last thing you want is some nuisance thing you did to come back and bite you on the butt later. In addition, if you have people in the community that can vouch for your character it might come in handy if CPS is knocking on your door
#8 - when it's really important, draft well-written letters to your representatives (get someone to proof read them!) and cc: them to anyone and everyone that has anything to do with mental health in any shape or form in your state
#9 - find a pdoc and psychologist that YOU can work with. Forget how the kids relate because guess what? they won't relate to their physicians, ever. So hang up that ideal right now. If you can't work with your kids' doctor(s) find new ones. Be willing to drive for a good one. Then chat up those doctors. Be kind, friendly (even if you want to hurt something - bite your lip and chuck the basketball in your garage when you get home.) Doctors know a whole heck of alot about a whole heck of a lot. If you can get them to talk, you'll learn all kinds of interesting tidbits
#10 - Don't fight with your spouse, s/he's not your enemy. Spousal arguments strip your resolve. Find a way to work as a team. Forget what all the damn books say. Find the way that works for the two of you and then STICK WITH IT. You have to be a united front or you won't survive. Remember, eventually your kid will be out of your house and you'll be staring at the other person in your life whose life is nothing but debris and carnage, just like yours. Embrace him/her often. Apologize often. Forgive often. Get over yourself often. Your spouse is worth it and so are you.
#11 - stay sober, stay sharp, stay strong. If you falter in any of these areas, get immediate help in any way necessary. You come first.  Always.
#12 - find a way to laugh every day. Find a way to be positive about something, ANYTHING, every day.  Make it up if you have to!

#13 - Don't blame. Yes, the last two posts were all about blame. But I don't hang my hat on blaming. Don't blame the birth parents, don't blame government, don't blame pharmacy companies, or doctors or medicine or your kids or whatever the hell it is we want to blame today because it was hell this morning with our crazy whacked out wango-tango psycho mess traumatized delayed challenged kids. Blaming doesn't get you anywhere. Blaming stymies you. It makes you stagnant. It makes you fall down and never want to get up. It makes you question your faith. It makes you question yourself. You can't go back and change things, you can only go forward. Onward, upward, just.keep.swimming.

Then bend over because rainbows and unicorns just might fly out of your ass one day. And if not, it's at least a good posture to eliminate the gas in your gut.

[1]FosterAbba, The Final Maze
[2]Shakespeare, Merchant of Venice

Wednesday, February 23, 2011

Politics and Mental Health Part II

Did i drop a bomb shell on you yesterday? Sorry. If you're just tuning in, go HERE first.

Same as yesterday, I'll speak in generalizations. I can take the time to research what I'm saying to substantiate my claims but I'm kind of busy lately taking care of two challenged children whose issues may or may not be linked to some experimental vaccinations for medicaid infants in our state. Or it could just be shoddy DNA, environmental factors and dumb luck. Who knows?

A former governor of our state is very good pals with a former republican president of our country. When i say "good pals" I mean these two were tight, thick as thieves, chums, they go "way back." In other words, it can be speculated that these two republican spearheads of state and federal government would do just about anything for one another. Might they have created special-interest legislature together? Ah, but then I'd be a conspiracy theorist again and as I said yesterday, that's not really my cup of tea. My only claim is that I pay close attention and that I don't speak unless I have some degree of certainty.

Let's presume then that our former governor and former president did act with singular intent. What might that special interest legislation look like for our state and then federal government as it pertains to mental health services dictated by politics? Gaze into my looking glass and let's have a looksee, shall we?

Said governor, we'll call him "Chicken" as in *CENSOR*-oven-stuffer-roaster-chicken and said president, we'll call him "Short Tree", came to an understanding about the state of affairs of mental health in our pitiful, poverty stricken state. Currently our state is 8th in the nation for poorest in addition to having a statistically disparagingly high incidence of mental health and developmental delay residents. Of course, issues may have been exacerbated by some potentially harmful experimental vaccinations that Chicken's state agreed to do (probably because Short Tree's Dad, the "other short tree" suggested it.) Compounding the state's concerns is the high number of rural residents that have very little if no access at all to medical services. Short Tree would have recognized in the federal budget that a large amount of Social Security Disability Dollars was being siphoned to Chicken's state. Chicken would have mentioned the statistics and thus a dialogue may have begun about how to amend both the state's woes and the SSDI and medicaidbudget.

What if Chicken's state became the model state for the new governmental regime about how to manage mental health on the state level? What if Short Tree could grandfather some legislation that guaranteed Chicken's state would get priority in federal grants provided that Chicken would guarantee that Short Tree's model was followed within the state agencies? What if?

Indeed, this can be tracked and substantiated. I've heard if for myself in parent forums, from professionals in mental health and in medicine and from CEOs of local hospitals. Chicken's state is currently the model state in the union for how to manage mental health. Heralded as "the first state in the union to have ..." xyz. Pick something pertaining to mental health or developmental delay. Chicken's state is the model for it, the state after which other states have made their models. Indeed, federal grant money can be tracked to Chicken's state, even after Short Tree has left office and his predecessor "Half-Brown Bear" stepped in. It might be said that Chicken's state has a direct line to federal grant money for all things related to mental health.

What does this model look like, you ask? The state has decided children under 13 don't belong in institutions. The state has decided psychiatrists aren't credentialed to write PRTFs for RTC placement. In fact, pdocs have very little jurisdiction over their patients beyond being told if they want to get paid for their medicaid patients, they need to keep all appointments to 15 minutes and only write scripts for and/or recommend drugs that are covered without prior authorization (PA). Doctors that have too many scripts requiring PAs get audited. Doctors that have appointment times running too long get penalized and black listed. Without warning, doctors that don't follow the state rules can have their medicaid patients stripped from their rosters. This of course sends those patients scrambling to whatever doctor WILL pony up and obey and usually those doctors are overwhelmed and inundated and almost always have to keep their practices governed by the state hospitals because they can't afford to do otherwise. That would be, state hospitals backed by federal dollars.

What else? Agencies. Ah yes, the in-the-dirt-with-the-patients agencies. Well, our state restructured a few years back, stripping my region of agencies and dollars at the same time making my region the largest in the state. We have only one agency now that can staff and treat patients like my kids with the proviso that if the patients get an autism spectral diagnosis including PDD-NOS, those children are no longer serviceable because the agency is not credentialed to provide that level of care. However, PDD-NOS gets us Social security disability and medicaid (and if you missed it in yesterday's post - if they stay on medicaid's roster, the progression of mental health and development can continued to be flagged and monitored.)

There is only one hospital in the state that is doing research on pediatric ASDs and it's here, 30 minutes away. There is only one hospital in the state that is doing research on pediatric bipolar disorders and it's here, 30 minutes away. When I try to get help from that hospital, I'm told to go back to the local agency that is staffing my children's cases. But of course, that agency is not credentialed to serve my kids.

We had another agency here. It began as a privatized institution that eventually required state assistance. It was shut down in November. Budget.

We had another state hospital here for mentally ill and developmentally challenged adults. Shut down. Budget.

Talks of building an RTC in this region have stalled out. Budget.

I've been told I could move to one of the two greater metropolitan areas and have access to a wealth of resources for my children. But of course, I'd have to MOVE. Moving challenged kids is THE.MOST.EVASIVE.THING.I.COULD.DO.TO.THEM. Not by any means, the most helpful. And then I'd get on waiting lists which begin at 6 month wait times.

Let's go back to dollars. CBAY waiver? Federal grant money. Our state's parent support network? Federal grant money. The interagency that is my backdoor entrance to all of the agencies that turn me away when I call them directly? Federal Grant money. The RTCs that are accepting kids? Federal Grant money. The group homes that don't ask you to relinquish your child's rights? Federal Grant money. But of course the bank-rolled RTCs and group homes are following the not-under-13 mandate.

LOTS of federal grant money being siphoned into my state. Lots of higher-ups telling Capital Hill that our state has the federally approved model for how to manage mental health in today's medical world. Lots of other states feeling pressure to model our state's model because the federal government is saying, "hey, they're one of the worst states in the union for statistics for mental health and one of the poorest. we've got grant money for your state too if ... you can model their model in your state." Essentially, this "successful" model is based on how much money it takes to support and not on how useful it is in rehabilitating patients long term. Where is the voice of the medical professionals in how to create a useful model for mental health? Oddly silent. And no one is cluing in to that fact. Doctors and Therapists no longer have a say in how to treat their patients. Government, Budgets, Legislators (that don't know shit about mental health) and, *ahem* PHARMACEUTICAL COMPANIES, do.

except this model isn't working. Clearly.

Talked to a professional recently. All coy and inquisitive, curious and non argumentative-like (i'm good at that, btw. one of my hidden talents) Said, "hey. here's the thing. you're saying my kid can't get services in your hospital. you say she doesn't qualify. i say I can't handle her. you say go to my local agency. i say my local agency can't help her, she doesn't qualify. you say that's what I'm supposed to do because that's what you're telling me you're told to say to parents. I'm telling you right back - we just fell through the cracks ... again." Professional sat there looking at me with a confused look. Then said, "well, that's how it works. Just keep trying, eventually it will work."


Current state of affairs thanks to Chicken and Short Tree:
1. no PDD-NOS Dx and I get no SSD or medicaid
2. with PDD-NOS Dx I get no local agency
3. no local agency, i get no PRTF for RTC
4. PDOC can't help, his hands are tied. In fact, he's HOG tied. he can't even write the PRTF!
5. no PRTF for RTC = my state can tell the union on capital hill that they're obeying the federal government's model of eliminating the need for institutions for children under 13 (but failing to mention that they have set it up so that it's impossible to get my kid to qualify even though RTC is exactly what she needs)
6. if my state can tell the union on capital hill that they're obeying the model, they'll keep getting federal grant money
7. if my state keeps getting federal grant money, the federal government can keep telling the other states in the union that this model works - and then convince the other states to follow our model so they'll get the same grant money
8. if more states get the grant money and follow this bogus model for mental health, eventually SSDI and medicaid dollars decrease
9. if SSDI and medicaid dollars decrease the federal government can tell the union "hey, we're reducing the budget! we're getting healthier! we know how to manage mental health! hip hip hooray, vote for us again!!! We're working FOR you AMERICA!!!!"

but wait. where does this grant money come from? So glad you asked. Say it with me, pharmaceutical companies. And maybe some schmoozed and schmaltzed rich whities that got sold a bill of goods: hey, all your money is being taxed to fund medicaid and disability. why not make your money do something GOOD and support mental health directly? and seriously ya'll. Do you REALLY think all of those charitable contribution dollars actually go TO THE CHARITABLE CONTRIBUTIONS?!?! seriously, if you believe THAT, then you just need to grab a blankie and go suck your thumb in a corner some where.

Anyone still want to say the pledge of allegiance?

heh heh.
just kidding.
i'm messin' with ya.
I'm actually just trying to see how much interest there might be for a sci-fi novel. I'm hoping it will get a movie deal so I can ... FRIGGIN' PAY FOR PRIVATIZED MENTAL HEALTH SUPPORT FOR MY FRIGGIN' CHALLENGED KIDS THAT MY FRIGGIN' STATE WON'T HELP AND THAT MY FRIGGIN' STATE MAY HAVE CAUSED IN THE FIRST PLACE WITH THEIR FRIGGIN' VACCINE TRIALS!!!!!

got a little crazy there at the end.
sorry about that.

and... oh darn. My crystal ball just fell off the table and shattered into a million pieces. Thanks for playing! Have a nice day.

Tuesday, February 22, 2011

Politics and Mental Health Part I.

I've deliberated for a week about posting this because I only have words to substantiate my claim and no legitimate proof. Ever the science teacher, I don't like to shoot of facts unless I can back up what I say. I have been cornered in life with no fighting words to defend me once to many so I've learned never to run my mouth unless I can document, document, document what I say. For this reason alone, my spouse rarely hears me say "I was wrong" because I don't say stuff unless I know I'm right. On the occasion that I may have erroneous information, I always preface my opening statements with "I'm not sure but..." I might feel bad for my hubby that I'm always right if I wasn't always right with a respectable margin of error of only +/- 1%.

That said, and with an insane morning of crashing and burning of services and support for Sissy because of a psych eval faxed to Sissy's therapists yesterday in which PDD-NOS is Axis I, I can't hold my tongue anymore. I'll elaborate further on our current woeful state of ZERO support effective immediately when the shitstorm settles and I can survey the carnage and determine if there is anything of value left on the ground.

For now, I want to talk about politics and mental health but because I can not substantiate what I know to be truth with links, a bibliographical index, foot notes and citations, I will speak in rhetorical generalizations. The information I'm about to share I've gleaned over the past several years by attending local and state mental health parent support groups and forums, by being a board member of a local support group for SpEd families, by listening to the stories of persons that work in medicine in any capacity, by being an advocate for parents of challenged kids which includes the occasional long email, cup of coffee or late night phone call in which people tell their sordid tales, by asking provocative questions of the-powers-that-be in a demure way that garners me the answers I'm looking for (anyone like a good fishing expedition?) and by keeping one ear tuned in to the politics of government that never make headline news, that would be, the REAL state of politics.

Regardless, dear readers, you'll still get the point: politics plays an enormous role in mental health and the subsequent availability of services for families and consequently, the overall quality of life for persons living with these diagnoses and their families or caregivers. It behooves us to advocate for our children and ourselves by keeping our foot in the door of local, state and federal politics. But fear not, I'm not a conspiracy theorist, just a keen observer with a photographic memory and astute listening skills. Anyone will tell you anything or show you anything, if you're willing to wait long enough for them to feel safe to tell their tales.

I'll start with a rhetorical conversation I had several months ago with an "imaginary" NICU nurse that resigned from her profession for what she deemed as ethical concerns. Imagine with me that this nurse was employed by a state hospital that served the local community's indigent patients. Here's how this scene could have unfolded:

The nurse told story after story of strung-out women delivering infants that had been pickled in whatever chemicals their birthmothers ingested during pregnancy. Most of the mothers would just show up on the hospital doorsteps in labor and then leave after recovery, signing away rights to their infants. Social services would always be involved of course and the NICU and maternity ward nurses kept numbers and contacts of adoption agencies, private homes waiting for placements and doctors that could get these babies into homes, bypassing the system altogether. She had just as many tales of teen moms on medicaid, taking their babies home or women being given "one more chance" by social services to prove their abilities as mothers and therefore their right to raise their children.

In all of these stories there was one common thread, medicaid. I listened intently and then her story stopped abruptly. She bit her lip and said in a hushed tone, "I really can't tell you the rest but I feel like I can trust you." She went on to explain that she had resigned from her position because of what she was asked to do to the medicaid babies. A state mandate, medicaid infants were given a different form of the standard vaccinations and in some cases were given extra, experimental vaccinations. She went on to say that the mothers would have papers passed under their noses to sign, documents indicating that they were giving the hospital the right to administer the vaccinations and that the risks were explained. However, these papers were usually passed and signed after vaccination or when the mothers were occupied and didn't have the time to truly review the documents accurately.

She concluded by saying that this procedure had been occurring for many years and that when she went snooping through files, discovered that the introduction of the vaccination practices directly coincided with the increase in autism and other mental health diagnoses in children. She asked one too many questions of the charge nurses, was told that no harm or danger would befall the infants and then was asked to either resign or be fired.

She looked at me to gauge me for my response. She had known before she told me the story that all three of my children were born as medicaid babies to a medicaid mother who was not mentally well enough to make informed decisions about the best possible care for her infants. I nodded my head. Two children received their vaccinations in the hospital before being released. Those same two have profound mental health and developmental delays. WG does not. I was there for WG's delivery. I took WG home, assuring the nurses at discharge that I would follow up with the pediatrician at home to make sure she got all of her vaccinations. WG is neurotypical.

If I extrapolate this nurse's account correctly, this vaccination process goes beyond the thimerosal claims people have made over the years, supposing that it is what has caused the rise in autism. The CDC staunchly rebuffs the thimerosal accusations and furthermore, it holds no water as that chemical has long since been removed from inoculations. As I understand it, this was an experimental vaccination process for our state alone, specifically targeting medicaid infants because "they are the easiest to track into adulthood." In other words, the statistics of the progression of those infant's mental health and development can be linked directly to the induction of the vaccination experiments. They are, as it is called in FISH testing for genetics, "flagged".

But of course, all of this is rhetorical generalizations. It could be any NICU nurse, in any state talking about any infants getting any vaccinations and getting any kind of gag-order or forced resignation. This could just be my attempt at writing a sci-fi novel. Maybe I lied and I'm a conspiracy theorist after all. Maybe it was late and I don't remember all the facts correctly, I did say I have a margin of error of +/-1%...

I'll let you sit on this for a day. If you liked part I, you'll LOVE part II.

Sunday, February 20, 2011

Say nothing: Say everything

Some days I'm overwhelmed. I can't emotionally deal with the grief and stress and challenges. I try closing my eyes tightly and thinking very hard that it's just a moment, it will pass, I'll survive and be fine but that's little comfort.

Sissy hasn't been over the top crazy since she started the Lithium Thursday night. But before then she did manage to break the door jamb in a rage and I thought she was going to kick down the temporary wall. Thank heavens her Papa is a master carpenter. Were it not for his mad skills, she probably would have succeeded.

I'd like to say Sissy is in a stupor but she's still stick poking, pacing, whining and defying. I'd like to say this medication is going to work but it's more likely that she'll fight against this medication too. It hasn't become worth it to her to surrender the wango tango and succumb to normalcy.

Technically then, she's been easier to manage if for no other reason than my ears aren't ringing at the end of the day. Except when she's "quiet" that is exactly when the trauma and stress of dealing with her nonsense catches up with me and overtakes me. I don't intentionally say and now I will get the heebee-jeebies when I look at my kid but that's exactly what happens. Which in turn compounds the PTSD because I feel guilty and depressed for feeling so distressed about my child.

It's been a blue, cathartic day. My mind has played tricks on me, trying to tell me I'm not a good person because I'm so overwhelmed by my daughter all while that same daughter, in a more subtle, drug-induced toned-down way has reminded me that I'm not parenting her correctly. All of this nonsense plays out in my head and in the stick-poking she does, an overlay for the PTSD and depression. Not a good mix.

I should be excited, Orlando is just a short week and a half away, my dresser laden with gift bags of homemade treasures for my housemates but I feel so numb. Part of me wants to scream and scream and scream until I pass out from lack of oxygen, then wake up and scream and scream and scream some more. Part of me wants to sob until I pass out from exhaustion. Part of me wants to punch holes in walls. None of me wants to move, or think, or breathe ... or even look at Sissy, let alone think of her.

Yet think of her and look at her and speak to her and feed her and take care of her and supervise her I must. I can't escape my responsibilities and the fact that if I stop, if for one second I succumb to the depth of despair that threatens to overtake me, I may never want to embrace her again. And for that mustard seed's worth of hope that one day she could possibly be better, I urge myself forward. i have to. I can't quit. I must go on for me. It's for ME that I fight to survive every day, not for her. For MY sanity.

On my bedside table I have some small framed photos of the children when they were little. One day I woke up and the first thing I saw as my eyes opened were fake smiling photos of Sissy. I wanted to take my arm and swipe them clear off the table in a defiant, angry gesture at the joke I felt life has played on me. But WG and AB are in the photos too. So I rearranged them instead. Now tiny AB and WG smile at me when I awake. Much better. Just now, to make sure it was so, I glanced at the table and instead of seeing those two tiny faces I saw the picture Sissy colored for me today. I should be glad she colored a picture for me, right? Instead I want to tear it up.

How it breaks my heart to think such horrible thoughts! But she's shown me such little regard, such intense hatred and disrespect, so little remorse and love and absolutely no compassion that it is almost impossible to conjure up warm, happy thoughts about her anymore. I hate myself for no longer being able to cry about it.

WG wanted to look through old photo albums the other day. I persuaded her to do something else. I can't. I just can't look at those old photos. Sissy's pictures... I want to put black cloth over all of her hanging photos. I want to cut out all of her pictures. Looking at them, all I see is years of heartache; years spent trying to love an unfeeling, unthinking, unwavering-in-her-anger Sissy. Even as I type that sentiment I cringe. Such a dreadful, despicable thing to think about your child. What kind of mother has these thoughts? What kind of woman can hold so little regard for an impaired child? How did I get this far? How do i go back? CAN I go back, is it possible to recover from this? Can I? Can Sissy? Will I ever know what wholeness and healing is? Will she?

Before I sat down to type these thoughts, I was plowing through the mountain of paperwork I've been procrastinating going through. I didn't used to be this way, I used to get right to these tasks but the despair has been so overwhelming that all I can do is sit and stare. One more responsibility is one more too many. I have Sissy. Isn't that enough? Except it's not all I have.

In that stack of papers was a folder I'd forgotten about, a registration packet to join the FG alliance now that AB finally has a diagnosis for his genetic syndrome. I read through the information about FG kids and my head started swimming. So many things about AB jumping off the page, words from other mothers, medical provisions, all of the nuances of helping our FG kids. One mother wrote "families need to first grieve the loss of the child they hoped for and then they'll realize what a wonderful child they've been given to raise." I paused when I read her thoughts. Did I mourn about AB? yes. But so much of AB's needs have been overshadowed by Sissy that I take it for granted that he is significantly impaired too. Ten years I've cared for him and his challenges without thinking, I've just done it because it was what he needed. And it's been easy. AB loves. Oh, how he loves. I could parent kids like AB all day long and never think of it.

Parenting Sissy?

It's not parenting. Parenting assumes that the child at some point is willing to receive something the adult figure is attempting to give to the child: love, education, assistance, support, comfort, protection, guidance, shelter, instruction, provisions, etc. Sissy has balked and rebuffed everything we've tried to give her. She receives nothing from us without a fight first. Eventually, it comes to a point that we no longer want to give to her. How many times can a hand be slapped away before it is swollen, bloody and bruised? Do you still offer the hand or do you withdraw? And at what point do you opt to withdraw?

I feel like I've entered a black hole, silent, soundless, a vacuum of black nothingness, a void of space and time. Though I know inherently that I'm not the first parent to find herself in such a position, i still feel acutely alone in my struggle and angst. If I thought for one minute that I could shout, "SISSY!!!! Can't you see what you've done??!? Just say the word, retreat from this insanity and I'll come running back to you!!!" and have any hope that it would make the difference, I would.

Instead, after three wetting accidents in one week, the third event sealing her fate to return to pull-ups even though we knew it was intentional wetting, Sissy said to me all coy and sweet when we were alone in the kitchen,

"Heh, heh. Isn't it so funny mom? now that I'm wearing pull ups again, I'm suddenly not having any more accidents."

I squeezed my eyes shut as tight as I could and bit my tongue. I said to myself, say nothing, say nothing, for the love of your own life and integrity, SAY NOTHING! then I opened my eyes and gave her a closed-mouth, cheeky smirk and walked away.

That's what I get from her. It is so vile and putrid and insane and I know part of it is her illness but only part. Just as I can choose to say nothing, so can she.

She'd rather stick poke until I scream.

Thursday, February 17, 2011

State says she's too young for institution

CBAY meeting for Sissy yesterday. CBAY is Community Based Alternatives for Youth, a federal stimulus act grant-funded program started in our state in 2009 to provide skilled and unskilled wrap around services for youths and adolescents that come out of RTC. Clients meeting the criteria for CBAY have a year in the program with monthly meetings. Sissy's anniversary date of discharge from RTC is March 6, 2010. Her anniversary date for CBAY is April 1, 2010. She is processing out of the program even though she has made NO changes in her issues, in fact, she's WORSE. She'll qualify for the step-down program called high fidelity wrap around but that means we no longer have respite dollars, or any dollars for that matter. All we'll have is the same lovely team (really, I love them!) trying to help us nail down resources available to us in our local community that would help support Sissy.

Jokes on us. Our state budget for mental health support is pitiful. What's more, our state is divided into five regions. The population and needs of those regions determines how many dollars that region siphons from the state's annual mental health budget. We live in region two, the second largest region in the state but the fourth lowest in allocation of state funding for mental health. Even worse, three years ago the state restructured, making region two even larger and at the same time bumping many of our resources to regions one and three, the greater metropolitan areas. All of that means, we have NO mental health resources available to us in our region. We dont' even have an RTC. The closest RTCs are a three hour drive from here regardless of which metropolitan area you head toward. That means, CBAY's high fidelity wrap program is going to net us a big fat goose egg. There are NO OTHER RESOURCES or STONES TO TURN OVER. That's it. We're done. Cablooie. Kerplunk. Caput.

And all of this with a child that is getting worse, not better. A child whose behaviors are what I now consider, "ungovernable". Ah, yes. two can play that game. I did some digging before the meeting. I learned that the term ungovernable is actually a legal term that buys us some leverage in getting placement for Sissy. I'm not making a false claim, she's ungovernable, but I'm also not going to roll over and die.

So what's next? A lot, actually.

Step One: A month ago I addressed the woeful support and services available in our area to one of our CBAY team members. I said, "hey, you know what? Officially, my education and internship was geared directly toward being a community health professional, not an educator. I've got this. Swing me some help and I'll spearhead a support group in Region 2, specifically so I can compile resources for CBAY CMOs to call ME instead of doing the rabbit trail chasing from across the state that you end up doing." She was on it like white on rice. I will be contacted by the spearhead of our state's parent support group next week to begin my training. And there's grant money for parents that are willing to do this as in, I could officially have a paying job when all is said and done. Holy freakin' crap!

Step Two: Sissy's scores are high enough for RTC placement but the state is kicking kids out. Apparently, the state started a 2011 initiative to keep kids younger than 13 out of RTCs. According to the state, institutions are not where children should be raised, homes are. Uh... ok. Yeah. How's THAT going to work?!?! I mean really?!? Because I have two younger children terrified of Sissy, The Dad and I are suffering physical, financial, mental and emotional strain trying to parent her and CBAY and Sissy's therapy team have said she's not receiving treatment, we've turned over every stone trying to help her, she doesn't want the help. Won't take the help. Doesn't care. Is getting worse, is ungovernable. Period.

Step Three: She'll eventually get a placement in a few weeks, to the first available bed in the state. UGH. Because I've requested that she go to one of two more institutional-type settings and not back to the summer-camp type place she was at before. But apparently that particular RTC is good at following the state's new initiative and by default, has the greatest turn around and bed availability. UGH UGH UGH UGH UGH UGH UGH. Sissy's therapists and CBAY team agree, the places I've requested are the best for her. But not likely to happen.

So she'll go back to summer-camp RTC, get bounced out in three to four weeks, will return to her behaviors inside of 10 minutes walking through the front door and ....

Step Four: she'll reauthorize for another full year of CBAY and IFI.

*huge collective sigh*

It buys us some time, it keeps us bankrolled, it gives us a few weeks of peace and time to restructure her supports. In the meantime, I'll be actively engaging in a new support position oh, and here's a plus I just thought of, she won't be there long enough to cut off her SSI. (30 days and you have to report that the child is not living at home).

Good God almighty in heaven. Can my life get any more complicated than this?

Step Five: planning in the background. While all of this unfolds over the next 6-8 weeks, Sissy's team and I will be looking into the following four avenues:
#1 - apparently there's an abandonment loophole that keeps our noses clean because there is enough paperwork to demonstrate that Sissy has not been willing to comply and that as parents we've provided every available resource to her. We'll see. I'm not keen on it because it's risky. I've said it a million times, I'm not getting in trouble with the law for this kid. Period. According to the team, if I keep these agencies on my "backdoor", then it's the AGENCIES recommending we file not us directly. An outright call from us to DFACS saying we can't raise her is the one that gets us all in hot water. not going there. period. that's not even an option.

#2 - placement. tricky. Our state only has group homes for kids 13-18. but our CBAY team is going to look into it. Placement means we don't waive our parental rights. score. It also means if she should straighten up, we could reunite. one of the snaffus is that Sissy has no legal issues: no running away, no stealing, no truancy, no drugs, no violent behaviors. Yes. that's GOOD. however, in our state, placements are easier to nail down if your child also has all of these legal issues in addition to mental health concerns. Sick. i know. I don't make these things up, I just learn what the game rules are.

#3 - ungovernable. A legal loophole. it's possible that we have enough documentation to prove that Sissy is an ungovernable child and we can pursue it legally to jump over some of this insane bureaucratic red tape trying to get a placement.

And what about the pdoc, you ask? Doesn't he have any say? Nope. With the 2011 initiative, the state usurped the pdoc's credentials - they now have no jurisdiction or credentials to place a child beyond a direct referral for a crisis stabilization based on a patient's history. Oh, and that's the other thing. We only have one crisis stabilization unit in region 2 and it only has 28 beds, 14 female, 14 male and that's ages 4-18. last week I could have driven across the state to get Sissy in the first available crisis stabilization unit bed. and then stay for three nights in a hotel because she would have gotten bounced out in 72 hours. I opted not to. Hello? Has anyone missed it? I have TWO other children, one of which is ALSO IMPAIRED.

I can't seem to say that last part loud enough to make people pay attention. And yes, I told everyone about AB's plan. no one flinched. They've seen it, heard it and done it all. My two other children are of no consequence other than mentioning their struggles ups Sissy's CAFAS score a smidgen and the therapist can get on the phone with APS and say, "and oh yeah, the client is threatening the safety and well being of her siblings, one of which is impaired."

Bottom line, sissy's 11. too damn young by the state's standards to be this damn hard to raise in a home environment. So F! us.

That's what I deal with. Every day. that's the information that runs around in the back of my head while Sissy screams to my face getting increasingly combative, defiant and belligerent by the minute.

fun times.

Tuesday, February 15, 2011

AB needs answers. I have none.

On Sunday night AB had his bible open on his desk.  AB's not much of a reader.  Classic asperger's, he's not much for reading fiction and nonfiction texts generally have to be filled with lots of pictures and be specific to one topic which he will devour until he can regurgitate the data.  Then he'll move on to the next topic.  Currently, he's interested in ghost stuff.

So when we saw his bible open on his desk, it caught our attention. I asked The Dad about it and he paused a moment, gathering his thoughts so he wouldn't get angry or teary-eyed.

"He told me he's reading it because he knows there will be something in there that will help him not be afraid of Sissy."

My turn to pause and gather my thoughts.

The Dad helped AB thumb through it, picking out some key scriptures that he thought would bring some comfort and we called it a day.

Yesterday AB got sent home thirty minutes after school started. He'd caught the stomach bug. He laid in his bed all day and I presumed he was sleeping because he said nothing, did nothing, didn't make any requests, didn't cry or moan, just stayed in bed. I figured if he was awake he was enjoying the quiet in the house, a rare chance to be home and not be listening to Sissy's caterwauling. (Really, she can be like a Banshee some times and AB is very sensitive to loud sounds).

When it was time to pick the girls up from school I called him to me and he told me he'd actually been awake for awhile. As we got in the van, he began talking and stimming and rocking and pacing and snapping and swinging his arms. All that stimming is his way of letting me know that he is agitated. He never actually says, "I'm mad as hell." or "I'm pissed off." or "I'm so mad I could punch something!" He just stims.

"Mom?" He started. "mom."


"how about if I just start saving. for an RV. i can do that, right?"


"cause how much is it, if I buy an old one? i can fix it."

"Depends on how old and how much fixing you want to do."

"well, that's what I want to do."


"can you live in an RV?"

"you could. It wouldn't be very comfortable living, but yes, lots of people do that."


By then we were at the school. I parked and we got out of the van in silence.

"son? what made you think of this?"

"i'm going to live in it. I'm going to park it somewhere and there's going to be a building. No. TWO buildings. one for the teenagers and one for the little kids."


"and the bad kids are going to be there. I'm going to take care of all the bad kids. I'm going to feed them cereal and bread and water. and that's it."

"I see."

"And mom? I'm only going to make the moms and dads pay $5 or $10. that's it. Because moms and dads can't afford to pay a lot."

We were at the covered walkway at this point and I was holding in the tears and clenching my teeth. I tried smiling at him but it wasn't a very good attempt. When I could put myself together, I said, "That's a pretty specific plan. Did you think of this just now or have you been thinking about it for awhile."

"Awhile. today. When you thought I was sleeping."

*more trying to choke back tears* We walked to the cafeteria where I pick up the kids every day, a plan the school helped me create to minimize Sissy's crap and AB's stress level (car rider lanes are not good places for autistic kids). I sat down at on of the tables and AB continued his stimming and swing/snapping of his arms. He had stopped talking.

"Well son," I said after a minute. "what are you going to do with these bad kids?"

"I'm going to make them better."

"Oh. Everything you've said so far sounds like a good plan but you haven't told me your plan for how to make these bad kids get better."

"I don't know that yet."

"ah. yes. you and most of the mental health community."


"nevermind. Let's think of some ideas."

"nah. they won't get better."

"you could try."

"why isn't the bell ringing? it's 3:30."

"It'll ring. What if, while you fed the bad kids bread and water you sat in a giant king's throne and ate steak?" He smiled.

"that would be mean."

"probably. But you said they're 'bad kids'. do you think watching you eat steak will make them be good?"

"nah. It won't work. they'll always be bad no matter what."

"you could make them write in journals all day?" He laughed a little.

"why would they do that?"

"To say how they're feeling."

"They can say 'sorry.'"

"yeah. that would be a good start."

"she'll never say sorry, mom. she doesn't care."

"I know, son. she doesn't care, you're right."

"I hate it."

"me too."

"when is that bell gonna ring!!! It's late. It's 3:31."

"yep. it's late. do you want a hug?"

"no. how do they ring the bell anyway? they need to ring the bell. it's time. they don't know how to ring the bell. they're stupid heads. It's easy. i can ring the bell. They don't know anything."

"i think it's just a little button they push."

"oh. they need to push it."

I was getting dizzy watching him pace and rock and swing his arms and bump the table with his belly. The bell finally rang and as usual, Sissy took her sweet time getting to us even though her classroom is directly across the hall. AB hates waiting for her. He comes from the lower building, always has his bag packed and arrives long before Sissy who invariably has to be sent back to her room to get her work. That makes AB mad too. Yesterday was no different with Sissy's crap. But AB wasn't waiting. He was already down the hall and waiting at the exit for us by the time Sissy pulled her shit books together.

This morning he was a weepy, miserable mess. He refused to tell me what was bothering him so I just helped him pick out his clothes, hugged him and put on his AFO's for him. What else can I do? What more can I say? I'm just as angry as he is and I don't have answers either.

Monday, February 14, 2011

Face Melt

Let's do an activity.

Step One: put ear plugs in your ears

Step Two: put your hands in front of your face close enough to occlude your peripheral vision but not so close you are touching your nose
Step Two Part B: unless you have a huge gonzo-sized nose in which case, I've got nothing for you except tough break having such a huge honker
Step Two Part C: If I actually say those words to you, act like it makes you extremely angry (instead of roflyao like you want to do) and scream loudly at me that it's not fair, everyone hates you and that you want to die.

Step Three: if you can hear any noise over your ear plugged ears, loudly shout la la la la la la la la la I can't hear you! I can't hear you! la la la la la la la la over and over.
Step Three Part B: if that gets boring or if your tongue gets sore, hum from the back of your throat so it sounds guttural, like a growling dog.

Step Four: Jump up and down as high as you can go and with extreme anger. Do this over and over and over.
Step Four Part B: it is preferable that you do this while wearing dress shoes and over a hardwood or linoleum surface because it makes the most noise.
Note: Noisy anger is excellent: a much desired attribute. In fact, if you can hear your noisy jumping over your humming and ear plugs, so much the better.
Step Four Part C: Try not to get dizzy and fall over.
Step Four Part D: If that should happen, scream at the top of your lungs like you're about to be murdered with sharp knives and chains. When you regain your balance, resume steps one through four.

Step Five: When your legs and knees are sore later from all the jumping, blame it on something, anything, preferably some absurd, completely unrelated event.
Step Five Part B: Whatever you do, do NOT accept that the pain is from your actions.
Step Five Part C: If you are cornered and feel like you have no choice but to admit that it's your fault that you ache, repeat steps three and four paying close attention to step four part D.

Step Six: Do this from the moment your brain is turned on until the moment you reenter a sleep state.
Note: brain awakeness may or may not include your eyes being open - do not miss opportunities to do this while your eyes are still closed!!!
Step Six Part B: if you exhaust yourself with these antics and find yourself napping midday, wake up screaming that you were most emphatically NOT sleeping and resume steps one through six until it is your scheduled bed time.

Confused? You shouldn't be. This is how a RAD perceives their day. The ear plugs equate to RADishes refusing to hear what they don't want to hear (say something like "and now we'll all gaily skip to Disney World and you'll discover that your RAD has superman hearing.)  The hands in front of your face equate to RADishes refusing to see what is directly in front of them.  RADishes would rather do all of this insanity than... oh, I don't know. Brush teeth? Bathe the body? (and actually USE SOAP *gasp* such a reprehensible mother I am). Do homework? Put dirty socks in the laundry bin?

When I send Sissy to her room for this insanity, she jacks it up exponentially: pounding walls, chucking crap, banging her head, screaming insults, etc. for hours and hours and incessant, mind-numbing hours. We've recently discovered that if we put on the stereo cranked up to volume #30, we can almost completely drown out her screaming.  Almost.

Her rages have gotten so frequent and over such mundane things that I now say to her, "well isn't that a nifty little trick? You rage so much I have no choice but to send you to your room so the rest of us can be safe. voila! you've gotten out of doing the task i asked of you. Pretty sneaky!  'Cept jokes on you, Sissy. After you're all done doing this insanity, you'll still have to do what I originally asked AND you'll be tired from all this nonsense plus have a consequence for the raging we had to listen to for the past *enter number here* hours.  That doesn't really work out for you in the long run, does it?"

Her response? Loud guttural growling while shooting me eye daggers, complete with arms crossed and pursed lips.

fun times.

Some days it's comical. Those are the days I have rebuilt my resolve because either I got some decent sleep or The Dad gave me a break. Most days start out with me being strong but by the end, I'm looking as haggard and wrecked as she is. Heck, I've been known to do primal scream back at her - not because I'm cranked up like she is but because it gives me the chance to calmly say afterward, "Gosh Sissy, you're right. that DOES feel better." Which usually makes her angrier.

Hey, I try. Gotta give me props for trying.

And all of that insanity is horrid. Short-circuits my brain. It is so hard on my body, emotions and mental acuity that The Dad will ask me a simple question like "Hey hon? Where's the remote?" and I can't answer. I can't answer because my mind can't translate his words. It sounds like blea doei woaslk woetkcibn? and I'll just blankly stare at him and blink. Sometimes my mouth will hang open a little. Then he'll repeat and my brain will translate but the words forming the answer to his question won't come out of my mouth. They just get stuck right there, on the tip of my tongue that is slightly hanging out of my mouth. All he'll get is "uhhhhhhhhhhhh..." Then something will snap inside my body, as if someone has yanked on my spinal cord and snapped it back the way bullies yank on a kid's suspenders and I'll reanimate and spit out the answer at warp speed, in a rash of prepositional phrases and with too much volume: "ONTOPOFTHETVNEXTTOTHEANNIVERSARYCLOCKINFRONTOFTHEMATCHINGBRASSCANDLEHOLDERS!!!!!"

Then I'll shake my head a little and return to normal and mutter something like "Good GOD, the kid's crap makes me lu lu!!!" Then AB and WG giggle because I said lu lu which may or may not morph into another rendition of AB's nighttime! daytime! (that's another story) for the next five minutes until we all holler "STOP!!!!" and we move on.

Do you remember the scene at the end of Indiana Jones Raiders of the Lost Ark when the dudes' faces are melting off because they looked at the ark? Yeah. that's how it feels raising Sissy - Face Melt.

All of that is pretty rotten, agreed?

No. No, that's NOT the worst she throws at us. The worst is when, after days on end of her insanity, sometimes even weeks, she'll suddenly wake up and be ...


happy. making eye contact. Approaching us for appropriate affection. Speaking kindly, politely even. Obeying on the first request. Does all of her hygiene routines without prompting. Wears tennis shoes on PE days without being reminded. Makes herself look pretty, even asks me to do her hair for her. Will WAIT UNTIL I'M READY TO BE SPOKEN TO to ask me politely if I will do her hair for her. Will say, "thanks mom, it looks pretty." Will laugh appropriately. Will engage in appropriate conversation. Will act like a developmentally normal 11 year old.

you'd think geez mom, that's friggin' awesome! What's the problem?

but the rest of us, ALL of us, not just me, want to do steps numbers 1-6 on her crazy @$$.


makes my hair stand up and my skin crawl. makes me want to puke and scream.



Not a peep of remorse or even shame. Not even recognition of her behaviors. Just a snap of the fingers and she's Pollyanna. Worse yet, we have no.effin.clue how long Pollyanna is sticking around to play.  Just for breakfast?  For the whole day?  A few days?  Makes us kitschy thinking about it because the rest of us are numb, stressed, depressed, exhausted, freaked out, bleary-eyed and weepy because of the crap she does. And she's perfectly perfect. Not even a sore muscle or a raspy voice from all the raging. Just ... perfect.

Leaves me sitting there blankly staring, eyes blinking, mouth ajar, tongue hanging out muttering, "uhhhhhhhhhh..." while my face melts off.

Thursday, February 10, 2011

Defining life by gallon-size zipper bags

There are always things one can find amusing about a crisis situation and since I'm a firm believer of laughter being the best medicine for weary souls, I dig deep to find those points of hilarity.

Of course, sometimes it requires a stretch of the imagination but hey, if you're laughing and getting those endorphins, who cares if it often requires black humor. Life isn't pansies and roses (although lilies are my favorite flower so I wouldn't mind if life was lilies... just sayin'.)

I have rehearsed and recited dialogues in my head so I am prepared for crisis situations. Sometimes I stand in front of the mirror and say phrases out loud so I can embolden myself. I absorb the miscellaneous doctor and therapy lingo like gluten-free noodles absorb water, with the intent of using those phrases later. The ideology is to sound confident, capable, determined, strong and knowledgeable. The last thing I need is to go weak in the knees and be weepy when EMTs or cops show up or when I'm being grilled by one of the FIVE people you have to talk to every time you show up at the ER with your kid for a psych evaluation. I've been known to be overcome by emotion that has caught me off guard but typically, if I'm teary-eyed in such situations, it's because I've learned when it is useful. Hey, my RAD has taught me that, if nothing else.

Occasionally, these self-induced rehearsals and tricks backfire and thus, it becomes fodder for black humor. This past Tuesday's crisis was no exception.

Sissy's medication vials are in a gallon-size ziploc bag, a trick I learned after the first trip to ER via ambulance. On that occasion I was shaky and overwhelmed so when the EMTs said I had to bring her meds, I found myself dumping the bin full of vials directly into a backpack, willy-nilly, helter-skelter. After that I said to myself, ok, that wasn't cool. Put 'em all in a ziploc and voila, they are ready to go in an instant. Really smart idea, works great for respite packing too and I highly recommend it.

That is, until the cops showed up THIS time. The ambulance was pulling away from the house, Sissy in the back doing her I'm-just-fine-and-dandy-thanks routine while I rode up front with the EMT that was a little annoyed that they were transporting a stable but suicidal psych patient (because apparently ambulances should only be used for the psych patients that are going psycho DURING transport - roll eyes), one of the THREE cops (yes there was THREE cruisers and an ambulance in front of my house - fun times) pulled The Dad aside and said, "what kind of house is this?"

The Dad said, "excuse me?"

"What kind of house is this," he repeated. "A group home or foster home or something?"

"No sir," The Dad replied. "It's our home."

"Well, I just thought, you know, how your wife had all the meds ready to go and all..."


Apparently, your home is a group or foster home if the adults in the home are prepared for crisis!

Man... that just kills me. Hysterical.

Eh, I guess it didn't help matters much that I have a padded cell in my living room, a motion sensor alarm for safety, a son with ASDs that didn't understand how to high-five with the police officers and my lingo on the phone with dispatch was clinical and precise (owing in large part to my personal rehearsals and proficiency in learning and using clinical language when speaking with other community professionals.)

What kind of home is this you ask?

MY home.
MY family.
MY mentally ill daughter.
MY life.
MY reality.
MY daily crisis-filled hell.

All wrapped up neatly in a gallon-size zip1oc bag, shoved into my mouth filled with clincal psychiatric language. Have a nice day.

Wednesday, February 9, 2011

OH my

It's on. Sissy is full tilt. Blitzed. Dissociating. Her anti-psychotic isn't working.

ER visit after suicidal ideation. 12 hours on our butts, 5 pediatric psychs ahead of us, we got sent home at 5 am - no beds left. we were at the bottom of the que. tough luck.

Psychiatrist is going to try direct referral so we get the first available bed. Therapist wants her there until we get RTC placement, her CAFAS is finally high enough. Once she's in RTC, we'll press hard for long term. She'll get kicked out in 3-4 weeks and reescalate immediately, get sent back, etc. etc. until we finally get long term. Another 6 months of crisis hell ahead of us, at least.

Meanwhile, waiting on thyroid test as a rule out so we can start Lithium post haste.

I'll post more when I'm not exhausted. Because I am.

Oh yeah, she was HORRIBLE today. Just FYI.

Sunday, February 6, 2011

My sunny, sun son

I love my son. Love him, love him, love him, LOVE HIM!! He is such a neat, fun, crazy, zany, nutty, batty kid. I tell him all the time I'm the luckiest mom in the whole wide world because I have him for a son.

I forget to blog about him because Sissy's needs are so polarizing that usually when I sit down to this computer, blogging about Sissy is the only useful way to get her crap out of my head and off my aching heart.

Oh Sissy... *sigh* I asked her last night during a RAD fest, "Just wondering if you could clue me in, give me a time line or something, you know, so I can prepare myself. Exactly how many more days, weeks, months or years do you plan on behaving this way? Because it's getting boring, old and irritating." She agreed that yes, it WAS getting old but she never gave me an answer. Her "answer" ended up being more RAD fest which flowed over into today like a bad hangover. Fun times.

When it comes to AB, I forget to mention all of his "stuff" that I need to do for him because it's rote. And because he doesn't make it hard for me to do for him. I WANT to do for him because he does something back for me, he loves, he helps, he's funny, he's kind, he's truthful, he obliges, he thinks ahead and thinks for himself, he tries to be aware of his environment (which is VERY hard for spectral kids!!!!), he showers me with random affection in gigantic ways. He's just such a cool kid.

I tell people that I have to parent two challenged kids in two distinctly different ways and those people usually nod their heads and say, "oh. wow." and I smile back because what does that mean anyway, parenting in two different ways?

It means I have to help AB with his AFO's. We tried letting him do it himself, he wasn't doing it correctly and was hurting his feet. It means at age 10, AB still needs help bathing. It means AB sometimes wets his bed. It means he sometimes needs naps. It means he needs LOTS of sensory input. It means I have to provide opportunities and devices for that input. It means he has to be spoken to and addressed in specific ways with clear, tersely worded ways. It means he has to have homework help. It means he has speech impairments. It means he has trouble writing and reading and doing math. It means he is sometimes threatened by his kid sister's academic achievements. It means he doesn't have friends over to play because it's not something he typically thinks about. It means he is AMAZING at art and I have to keep him amply supplied (which is tough to do! He runs out of blue A LOT). It means he needs a vibrator chair and a weighted vest and a trampoline and compressions and a surgical brush for desensitization brushing and he can't sleep unless someone has rubbed his back. It means he burps loudly and has difficulty swallowing so he can never eat alone because he's ALWAYS choking. It means he has quirky bowels so we never know when AB runs to the bathroom if it's going to require a complete wardrobe change and a hazmat cleanup. It means an IEP and medications to treat both his mental health concerns and his physical issues. It means a life time of people not understanding my beautiful son and a lifetime of The Dad and I advocating for him so people can learn to understand this beautiful soul like we do. It means planning for his future TODAY because we have NO IDEA what his future will look like. We only know it won't be a typical young man's future. It means we hope that whatever his future is, he will never be very far away from us because that makes us worry just thinking about it. It means he's vulnerable and innocent and susceptible.

It means I love him.

Today in church (yes, we went!) a young couple in front of us had their infant son who was gassy and fussy. I smiled. I remembered those days. AB's little GI system was so fragile it took until he was 10 months old for him to drink and keep down an 8 oz bottle in one feeding. I remembered jiggling and jostling and rocking and pacing and holding and soothing and rubbing and moving AB for 12 straight months. He couldn't be still. I almost laughed out loud thinking of it this morning because now AB does all of that movement for himself. Skippy Slappy Flippy Flappy is his new name currently. Wow. Stimming hell. And the ticks. He's always got some weird tick. Currently it's twisting his neck in a jerky head movement so it will make a cracking sound. Makes The Dad want to puke. LOL

I try not to daydream about Sissy and AB's futures because that's scary and idealistic. Truly, we don't know what either of them will be able to do. Currently, group home or assisted living seems like a good option for both of them. But sometimes The Dad and I talk about maybe keeping AB closer to home than that, maybe setting him up in a loft on our property or something like that. We think about him coming to work with us and we think about how we might use his art skills as an employable task. But the other day I let myself daydream. I imagined AB having a wife and the two of them living in a mother-in-law type suite that we'd build for them and AB and his wife coming for supper or the two of them making supper for us and it was beautiful. I savored it for just a minute and then put the thoughts away. Scary. scary, scary. I don't want to have ANY expectations, hopes or dreams. I just want AB to be happy.

And that's life with skippy slappy flippy flappy AB. Earlier today Sissy was on the Wii and she was too close to the TV. In his characteristic autistic way complete with monotone voice and quick, halting speech he said, "Sissy you're too close move back". She hollered "JUST QUIT ALREADY!" Nonplussed, AB said, "well, you are." He's not pleased with her at the moment. Quite irritated, actually. Told her last night at the super table that she stinks. (she does). I suggested that he tell her such things in privacy and with love and concern for her welfare. "OK Mom" was his response. I have no doubt that he'll do exactly that.

AB was awarded "student of the month" this Friday. His picture is on the bulletin board outside the principal's office. "AB is respectful to others and is the most improved student." Of course, his expression in the photo is stoic, straight mouth, almost angry but I knew the truth. He was so happy he couldn't contain it. "See mom" he paced. "They had to take my picture. She put it here." I thought I would cry.

I could parent 100 more kids like AB. I could do it with flair and pizazz. I seem to have a knack with spectral issues, I guess I can call it a strength. WG and AB both say we should adopt another boy, "four, mom, that's how old he has to be," said WG last night. Maybe we should. Maybe he should be a child with a spectral disorder. "Just ask God then, WG, if you're so sure that's what our family needs." So if you have any questions about your spectral and/or genetic-syndrome kids, ask away. I just might surprise you (and myself) with some much needed help.

Thursday, February 3, 2011

WG lost it tonight

WG lost her crap today. She just couldn't hold it in. It's been festering and simmering for weeks. Can you blame a six year old for being this angry when her ENTIRE LIFE has been spent dealing with two challenged older siblings? When I tell her don't do what they do, WG and BTW, respond better than them too. She's only six, I'm asking a lot of her to behave like an adult in the face of such adversity when let's be honest, there are ADULTS that don't keep their crap together. Can I get an 'amen'?!?

She screamed, she kicked, she hit Sissy, she hollered in The Dad's face, she fussed, she tantrumed she got sent to her room to eat supper alone. I went in to bring her a table for her meal and she clung to my legs, "MOMMY! Please don't leave me alone!" and I said, "I'm sorry WG, but you have to face the consequence for your actions."

The Dad brought her the supper and she hollered at us all, "But Sissy doesn't care! She tells us so ALL THE TIME! She tells us how she hates us, won't be nice to us, ALL THE TIME! She's MEAN!"

And WG is right. All of what she said is true. Except WG isn't challenged and regardless of the crap Sissy doles out daily, each of us is responsible for our actions, WG included. She can't just go around losing her crap, hitting, screaming, kicking, being disrespectful and defiant. We don't let Sissy do it, she has consequences too (although 100% of the time Sissy gets quadruple consequences because she goes apesh!t when you give her even ONE consequence).

WG pulled it together and was silent almost immediately. I tried very hard not to cry and run to her room and rescue her. When she was finally settled down, The Dad brought her food back to the table, WG apologized to Sissy for hitting and the rest of the evening has been without issue.

It's not fair. I'm expecting my six year old to behave better than her older sister. No. not true. I expect the same from Sissy, she just refuses to comply. It is heartbreaking, though, to hear the truth screamed at us from the mouth of a spent six year old. Her words still resonate in my bones, two hours later, yet I have no answer to give WG because I've screamed the same at the powers that be and still, Sissy is here, wreaking havoc on the lives of FIVE people.

Tuesday, February 1, 2011


Sissy was OK this past weekend. This after the shitstormcrazypsychoasscrap nonsense of the previous two weeks, perpetrated specifically from the respite.

Currently discussions about respite are on hold with the exception of the Orlando weekend but gosh, it's going to be HELL when I come home...


Anyway, so she had a decent weekend and we're all wickety wacky loo loo because she spun her little head off like Beetle Juice for two straight weeks and I really should have hauled her butt to the psych ward last Tuesday and then like a switch, suddenly she's all fine. So the rest of us are like "wait, WTF?" and "ok... so she's being nice for THIS ten minutes but what about ten minutes after that?" And that's how the rest of us spent the weekend as we watched Sissy be all normal and such. (Well... normal for Sissy, which isn't actually "normal" for an 11 year old but whatevs, we're over that expectation.)

Sunday night rolled around. Shit. Sunday nights. because what she's really thinking is "OMG I HAVE ANOTHER WEEK OF SCHOOL!!!" but what she does is "OMG MY FAMILY SUCKS RANCID OSTRICH EGGS!!!" and all we said is "Sissy, go take your shower and get ready for bed."

crap crap crap scream scream scream


REALLY tired of this, just sayin'.

Somehow she got into the shower, the water was turned on and she emerged wet in a very short amount of time and not necessarily smelling cleaner. Mommy radar went off she didn't bathe and I said to myself say NOTHING or you will DIE!!! so The Dad bathed AB and WG showered herself and while WG was in the shower Sissy was sitting all high and mighty on the recliner, her dripping wet hair ruining the brushed suede sofa (you know how they do when the RADishes think they've gotten away with something) and I pretended I was fussing over the laundry. "Sissy, I was just wondering," i ventured cautiously, not making eye contact and talking very nonchalantly. "What is it about shampoo and soap and bathing and wiping and washing hands and all of that hygiene stuff that bugs you so much?"


I feigned surprise. "What's wrong? why are you hollering? I was just wondering is all. Just curious. Because I don't understand and I just want to understand."


And I was like GOTCHA YOU LITTLE TERD! but I didn't flinch. "I'm not saying anything about your shower. I am just wondering why bathing and shampooing and all of that is such a big deal."


She was reading a book and so she stuck her nose back in it to say EFF you mom, I'm not listening. So I took her cue and sat next to her, taking the book out of her hands very calmly and quietly, making sure she could see that I marked her place. "Hey. HI. Can you look at me for a second?"


"Just trying to understand, kiddo. Can't help you if I don't know what you need. Can you tell me what it is about soap and touching your body and all that that makes you so mad and not want to do it?"


I waved my hands in front of her blankly staring face. "Hi. Over here. Can I have your eyes for a second?"

I got her eyes and said, "So... what's the deal?"

"It's disgusting."

"What's disgusting?"

"Everything. Soap. Bodies. Shampoo. It's gross. It makes me want to puke!" this last part she spat out at me angrily.

"Oh. Ok. That's good. Glad you told me. I'm not sure how to help with that but I'm glad you told me. Can we tell your therapists? They might have some ideas."

*grunting" "YES!" she growled to her lap.

"Ok. Great. Here's your book. You can finish bedtime routines when WG comes out of the shower, ok?"



I'm glad she told me but gosh. How DO you help that? Soap is disgusting?!? Her body is disgusting?!? How about dirt, germs, grime, poo and pee...

Sometimes mental illness makes me really confused. I know it's the sexual molestation from early childhood, that this weird psychoses about hygiene is classic for sexual abuse but really, I'm stuck. I've got no clues. Lord, help me. She'll get a period any day. I'm gonna have to put her in Depends and follow her to the toilet, maybe even don a bathing suit and get in the shower with her. God, it's nutso.

And that's all I got about THAT.

And... she had three good days minus the whole I-told-you-i-bathed-but-i-really-didn't thing and this morning she was an angry hornet for no good reason. Plus, after a month hiatus, all the sleep walking, sleep talking, difficulty falling asleep and night-time wakefulness has returned despite the PRN meds. ugh. I pick her up in forty minutes and I'm just waiting for the hell, cause it's gonna be BAD tonight.

Rehearsing it already in my head:
911 state your emergency.

My 11 year old needs a transport to the hospital for psych eval...

Is that her screaming I hear?

no shit sherlock