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

Thursday, March 31, 2011

H.R. Puff and STUFF

Dana at "what were we thinking?" asked for some acronym help. And Jamey wanted to see a pic of the new haircut. And I wanted to show you the picture Sissy and I made together at therapy at the RTC yesterday. So that's what today is all about. STUFF.

I've done this about a year ago and I think at this point should just put a sidebar link to it because as my cousin mentioned yesterday, I talk in letters. Well... yeah. I do. I'll own that. But cuz, just because I know you're reading this, I'm NOT owning SPP. And that's my story and I'm sticking to it. To everyone else, no, you're not allowed to ask me to explain the SPP acronym.

[edit] looking for the acronym dictionary? it's been moved and hyperlinked in the right sidebar!
My DIY haircut!

In therapy session yesterday, Sissy and I were asked to collaborate on a drawing. The objective was for us to pretend we were fish and to draw on aquarium we could both live in. What did we HAVE to have individually to be happy? Together to be happy?  What could we absolutely not tolerate? Etc.

Sissy wanted an aquarium that people could view in a public way, creating a tunnel passage that people could walk under.  Then she and I drew our fish.  Mine is the fat purple one and hers is the tiny pink one.  Then I said, "what do you HAVE to have?" and she said, "A stingray" which she drew between us. 

OK.  So let's get this straight.  The first thing she wanted was a public-viewing, all-access pass for strangers to ogle our fishy lives.

THEN she had to have a stingray, arguably the LARGEST item in the aquarium and it is RIGHT BETWEEN US and she made sure to draw the barb on the tail... in a different color even!!!

Next she said she had to have sharks. I said, "uh, yeah, I can't live with sharks. But I do need fresh air." We compromised by making a shark bubble tank and she wanted it on the side I was on.

I said I needed green stuff. She said she wanted it to be seaweed and could I draw it? I drew it and colored it in but she didn't like my coloring job so she colored over it.

I said I needed a quiet place to hang out. She told me it had to be a castle and to draw it on HER side of the tank (you know, on the OTHER side of the sting ray)and could she please have access to it ... "when I wasn't taking my timeouts?"

She said she needed a treasure chest of jewels to play in and that I could play in it anytime I wanted to. She said it had to be on my side. She said she needed a cat. And a starfish. And music. And it had to be Harry Potter's mermaid music egg so it could be heard underwater. (this would be the music egg that sounds HORRIBLE - HURTS THE EARS when it is played out of water) She didn't like the way I drew it so she altered it.

When the session was over, I asked her if she wanted to keep the picture. She was walking out the door and handed it over head, backward to me, without facing me and said I could keep it, she didn't want it.

Oh, and the people under the aquarium are The Dad, WG and AB. The Dad says, "yeah, she drew us UNDER her giant stingray".

Acronym Dictionary

wait.   How did I get here? You linked from the right sidebar

Acronym Assistance and Dictionary
 Listed in alphabetical order. If there are any I missed, comment and I'll add it

AB - for my blog only, AB is "aspie boy"
ABA - applied behavioral analysis, a therapy form typically used for autism
ADD/ADHD - attention deficit disorder and attention deficit hyperactive disorder
AFO - ankle foot orthotic - a brace worn by persons with CP or chronic toe walking issues to correct or prevent the behavior
APS - adult protective services
Aspie - a term of endearment used by family members that love someone that has Asperger syndrome
Asperger Syndrome- a higher functioning form of autism. Many in this category are highly intelligent
ASD - autism spectral disorder
Axis - the DSM lists six axis levels for disorder diagnostic criteria
b.i.d. - doctor and pharmacy code for "dose a medication twice a day - morning and night"
BP - bipolar disorder (was formerly referred to as manic/depressive in the DSM)
CAFAS - child adolescent functional assessment scale - the form a core provider fills out to determine if a youth requires a PRTF
CBAY - community based alternatives for youth - a federal grant program currently in 14 states in the U.S. It is a funnel of medicaid dollars specifically for children that come out of RTC but still qualify for PRTF. The program provides wrap-around services in the youth's community. It is called different things in different states
CBT cognitive behavioral therapy
Class 5 RAD - completely made up. My daughter scores 49/50 on the RADQ. That's pretty severe so tongue-in-cheek I tell people she's a "class 5"
CIS - community intervention services
CME- care management entity
CORE - wrap around services similar to IFI but a step-down, concentrating largely on skill building
CP- cerebral palsy
CPS - child protective services
DBHDD - department of behavioral health and developmental disability
DBT - dilectical behavioral therapy - a form of CBTs that uses acronyms to guide a patient through a coping skill. (ie)STAR = stop, think, assess, react
DD - developmental delay
DFACS - Department of Family and Children's Services same as CPS but different states call it different things.
DHS - department of Health Services
DID - dissociative identity disorder, formerly referred to as multiple personality disorder
DSM - the mental health and developmental delay Dx "bible"
Dx - diagnosis
EBD - an IEP plan for emotional and behaviorally disturbed students
ER - emergency room
FASD- fetal alcohol spectral disorder
FFCMH -  National Federation of Families for Childrens Mental Health
F-G syndrome - the F and the G stand for the last names of the two first people to be diagnosed with this genetic syndrome
FSP - family support provider
FTM - family team meeting
GI - gastrointestinal; many kids with DD and/or genetic syndromes have chronic GI issues
HFA - high functioning autism
Hippotherapy - horseback riding therapy for disabled or impaired persons
IED - Intermittent explosive disorder
IEP- individual education plan
IFI - intensive family intervention which includes in-home family therapy, individual therapy and skill building activities
LIPT - Local Interagency Planning Team; a local interagency that staffs a case and determines what resources are available for that child in the community.
NTs - a blog and SPED mom slang for "neurotypical" or persons without developmental delay or mental health issues
MH - mental health
MHDDAD - mental health,developmental disabilities, addictive diseases
MR - mental retardation, typically considered at IQs 70 or lower
Mood Disorder - NOS - NOS just means 'not otherwise specified" this Dx simply means there isn't enough clinical evidence or time to determine the level of mood disorder
NAMI - national alliance on mental illness
OCD - obsessive compulsive disorder
ODD - oppositional defiance disorder
OHI - an IEP plan for other health impaired students
OT - occupational therapy
PDD-NOS - pervasive developmental delay not otherwise specified
pdoc - blog speak for "psychiatrist"
PRTF - psychiatric residential treatment facility
PT - physical therapy
PTSD - post traumatic stress disorder
q.AM - doctor and pharmacy code for "dose a medication in the morning"
q.h.s. - doctor and pharmacy code for "dose a medication in the evening"
RAD - reactive attachment disorder (but also reactive AIRWAY DYSFUNCTION for sever asthmatics so be sure to specify when you're at the ER or you might be greeted by a pulmonologist)
RADQ - the psychometric evaluation that evaluates whether or not a child has enough symptoms to be clinically diagnosed with RAD
RTC - residential treatment center
RTI - response to intervention - a four tiered academic plan for at-risk students to determine what level of additional academic assistance they need. Tier 4 students have an IEP
Rx - prescription
SAMHSA- substance abuse and mental health service agency
SIB - self-injurous behavior
SPED - special education or sometimes used to refer to a person or group that work with students or have a family member that requires special education
TL - therapeutic leave; when a family member can take a youth or adolescent away from the RTC for an outing or overnight
WG - for my blog only, WG is "wonder girl"
wrap services - services in a community that include psychiatry, psychology, therapy, community programs, etc. that help integrate a troubled youth back into a normal community and home lifestyle. 
504 - the number of the amendment to the constitution that specifically addresses the rights of disabled citizens - a disabled child that does not qualify for an IEP can get academic accommodations through this avenue

Wednesday, March 30, 2011

Thanks Temple Grandin!

If there are six degrees of separation between you and a person with an austim spectral disorder (ASD) than you need to watch Temple Grandin.

I watched the movie with the kids' bioaunt who is schlepping at our house during the busy season for us window cleaners. We laughed, giggled, cried, got frustrated for Temple and haven't stopped talking about it. The first ten minutes of the movie I was riveted, it was like watching AB! So amazing.

Things I've taken from the movie as a mom of ASD kiddos:
1. "different, not less" a quote from Temple and her mom. I believe this about my children and exude this philosophy but I don't verbalize it publicly which is just the same as saying out loud, "different AND less". I need to be even more vocal about it.

2. Never stop telling your kids the truth, never stop teaching, never stop being honest and fair, never stop advocating, never take second best. When you think your child isn't soaking it up, they are. And one day, your child may come back around and repay you by acknowledging your efforts or even better, pay it forward. But don't hang your hat on that outcome. It's the exception to the rule. Keep plugging away because it's what is right as a parent of a challenged child.

3. Even though Sissy has PDD-NOS on her charts, she's still VERY different from AB and Temple Grandin's issues,so much so that I am still ready to fight and say that she's not PDD-NOS after all. She's just never had the same concerns as AB, ever. Even AB doesn't match up to Temple Grandin's autism. He does not have that level of intellect in addition, when I score him on psychometric evals, he always scores as HFA (high functioning autism) but the docs list him as Asperger's because he's so verbal. Why is he so verbal? Because of the F-G syndrome. See, it's puzzling. There are too many variables to make a succinct Dx and then make therapy plans based on said Dx.

That said, it's time the mental health community began to acknowledge that all our different levels of Autism just need to be thrown out. It's a spectral disorder, just like FASD. ASD should be the final Dx for EVERYONE on the spectrum. In fact, the kids' pdoc said this what is coming down the road in the next few years for the DSM.

3. Most importantly, how does ASD connect to RAD? Ah... the meat of the blog. Yes, eventually it all comes back to Sissy, doesn't it? Story of my life, of OUR life.

In the 50's, when Temple was first diagnosed, the psychiatrist told her mother that the autism was actually infantile schizophrenia and that it was thought that it was early developmental bonding issues between the infant and the mother. Of course, Temple's mom was on that like white on rice. She hadn't been disconnected from Temple, her daughter simply wasn't connecting back in like kind. Temple didn't hug her mother until she was an adult working on her masters. RAD. RAD! my friends.

Here's a little nugget that I uncovered a few weeks back when I was going through records to take to the pdoc for AB. The initial psychology report I did, including the 500 insane pages of pyschometric evaluations (ok, more like 45 but felt like 500) was a RADQ. I remember being annoyed. Sissy was the RAD, not AB. In that instant, as I poured over the file of documents I have for AB, I recalled the whole scenario.

I did the RADQ for AB, he scored 8 out of 50, not diagnosable for RAD. I asked the psychologist about it at the review and the good doctor told me that it's standard procedure to check developmentally delayed (DD) kids for RAD, that many DD score as RAD because their challenges make it difficult for them to understand social constructs, human relationship and may have sensory issues that prevent them from being able to be touched. Of course, AB hasn't got those concerns. He's got attachment in spades, maybe my most attached kiddo, even over WG (who has always had some anxiety issues when I'm not around that started at birth - but I can manage it, talk her through it and it's never been an impediment to her well being or our relationship.)

So as I watched the movie, I was astonished. Of course Temple would have been perceived as a RAD, even though she wasn't dissociated from her mother. She admits herself as an adult in the movie that she doesn't understand how people relate and that touch is painful and that she can't be fixed.

Enter Sissy's recent confounding Dx of PDD-NOS (currently presumed to be the highest functioning form of ASDs) and the fact that whenever she is discharged from RTC we are on our butts for mental health resources because she no longer qualifies for those services and I had an AHA! moment. Perhaps a portion of Sissy's RAD is her ASD. To quote the staff from the psych floor at her last stay in December, "She's a tough case. We can't figure out where the RAD stops and the PDD-NOS begins."

So why is Sissy so tough? Because with or without an ASD issue, she's still a class 5 RAD. Seeing her for the first time today after three weeks of hospitalization, we had minimal touch, she rarely gave me her eyes, we sat at opposite sides of the therapy room, isolating ourselves from each other, she didn't notice my drastically different haircut (I've cropped it!) and she was aloof and distant emotionally, an altogether flat affect regarding me.

Of course, that means we have a snafu when she discharges. With no more access to mental health resources, she'll come home unsupported and I'll still have a RADish with dual diagnoses. Where does RAD stop and DD begin? Does anyone know? I don't think that's a quantifiable answer. Can Sissy be healed of her RAD? Again, with DD confounding her issues, the answer has to be, No. not entirely.

Right now the plan is to get in with LIPT and hopefully get both AB and Sissy on a DD waiver which is simply a different funnel of resources that are billed to medicaid. Think of Plinko on "The Price is Right" You drop a coin from the top and it trickles down to the bottom and to whatever prize category it lands in but the catch is all the pegs in the middle of the board bounce the coin around helter skelter. This is how resources for challenged kids work. There are lots of funnels for resources for every category of need but you have to drop a bunch of Plinko coins down the medicaid shoot before you land in the prize category you're searching for.

How do you avoid this nonsense? You can't. And even as I type this I know it's still a crap shoot as to whether or not LIPT will benefit Sissy's case or if we can get both AB and Sissy to qualify for the DD waiver. The one thing I HAVE learned in all of this is that when it comes to waivers, you aren't going to have your child's needs adequately served until you have the right Dx. And getting the right Dx often takes years because it takes that long for your child's needs to fully emerge as they progress (or don't) through development and puberty. It's all easy to say but not easy to live with, especially if you have a class 5 raging RADish to contend with. We want answers NOW. TODAY. INSTANTLY. With DD, MH, RAD and ASDs, there's no "instant".

I am the mother of a class 5 RAD with dual diagnoses that will never be healed. I can wear this hat with confidence for as long as Sissy can be in our home without raging. If only all the world of challenged people was made up of highly motivated and confident persons like Temple Grandin.

Monday, March 28, 2011

My Aspie-sized life

"Mom? Mom. Mom I was ..." This is how AB starts every conversation, usually from another room and in a quick, rapid-fire speech that is either too loud or too quiet and includes a speech impediment to boot. Once he finally makes it to the room of the house that I'm in, he will be wrapping up whatever thought he was attempting to convey, assuming I've not only heard every word but UNDERSTOOD every word. And all I'll get is the tail end of it, "... so can I Mom? Mom? MOM. MOM!!!!" Of course, none of that is said without *bump bump bump bump bump* of his belly or legs against whatever furniture or obstruction he can bump and *swing, swing, swing, swing snap* of his arms past his warm-up pants finished off with a touch to the top of his head and a jerk to the side like he's trying to crack his neck.

"Mom? Can I?"

And I'll sigh and look him in the eye and say, "Son. I have NO idea what you are talking about." Usually, that's the truth but sometimes it's not. Sometimes I've caught wind of the whole bit but I refuse to be spoken to from across rooms. I'm not his maid or his servant. And furthermore, such social cues are oddities for people with ASDs to begin with so the last thing I want to do is reinforce these behaviors by allowing them. "Stand still. Look at me. Please start from the beginning, slowly."

Half the time he'll get agitated or angry and say something like, "ugh! I said it already!" or the one that makes me snicker, "you heard me, I know you did!" especially when I DID indeed hear him. That's not the point. The point is that he needs to learn how to communicate properly.

The other half of the time he is pacing, swinging, mumbling, looking one hundred other directions, scratching his head, talking quickly and trying to ask for what he wants. The best part? If I agree to what he wants, he skips and says very quickly, a staccato beat, "YAY!" If it's something he thinks is REALLY awesome, he hugs and kisses me.

I love it when he hugs and kisses me. *big, warm grin*

His YAYs are so catchy that I find myself doing them. Most recently I was at the pharmacy (ok, back up. when am I NOT at the pharmacy getting meds for my kids? It's a joke now. The pharmacists, ALL of the staff at CVS, know me by first name. geez.)

Back to the story. Medicaid likes to block us out from refills until we only have 3 pills left but sometimes that means I'm making five trips a week to the pharmacy (thus you know the reason why they all know me so well.) Recently, in desperation, I showed up with a bunch of nearly empty vials in hand and said, "please see if medicaid will process all of these ..." and the pharmacist finished my sentence.

"... So you only have to come back once?"

"uh. yeah." i rolled my eyes. She processed it in the computer and assured me that they all went through. "YAY!" I shouted with glee and hopped,just like AB. She looked at me funny. "um. yeah. Ok. sorry. That was, uh, very autistic of me, wasn't it?" She laughed. I love that my pharmacists know that I'm the weird mom with the ASD kids (among other issues.)

Every morning AB dons his AFOs. I think we're on pair five? It's time to fit him for another pair, his toes are hanging off the ends. I used to let AB put his AFOs on by himself but they became a bone of contention for him so now I help. I help because I use it as leverage. "AB, if you put your dirty clothes in the laundry, I will put on your AFOs for you." I do something like this every morning. It's not because I WON'T do it for him (he knows I'm going to help him either way.) It's because he needs a little motivation. He's not a sticker-chart kid. Could give a flying flip. But dangle a little carrot that he can easily snatch up in two minutes worth of minimal effort and VOILA! I have complete compliance. And when it comes to those dang AFOs, I NEED compliance. He wears them for toe-walking but at this point, it's for prevention and not correction. No. AB will toe-walk regardless, it's a sensory issue. What I'm trying to prevent is arthritis and wear and tear on his hip, back and knee joints.

Today, AB was Captain Sensitive. This is what I call it when no one can breathe around him. Or move. Or wiggle. Or giggle. Or sing or talk or bump. Or anything. "AB. That's not the rule." is what I say first. For instance, WG has little legs and will push on the back of the middle bench seat in the van so she can scoot her bootie all the way into the seat. AB screams that she's kicking the seat. Literally, screams it and often cries about it. "AB. That's not the van rule. WG is getting into her seat." *more screaming and crying from AB* "No son. The rule is WG can't kick it while the van is driving."

But when it's Captain Sensitive day, forget it. Rules or no rules, he's gonna be a grumpy Gus. How do we fix Captain Sensitive? input, input, input. Today, adaptive swim fixed it and when he emerged from the pool he was Captain Pizza Man. Literally, he got out of the pool and walked into the waiting towel I'd held out for him with, "Momdowehavepepperonipizzaohwaitwedoit'sinthefreezerthethreeminuteonemomcanI?"


"yay" kiss, hug.


Other days he's "Captain First". He has to be first. Period. Out of the van first, into a building first, onto the next lane in the grocery store first, into an elevator first. First, first, first. It used to drive me nuts. I used to try to curb this behavior. Now I only correct if he's not holding a door open for the person following him or if he pushes another person out of his way (which he'll deny, btw.) I'm not sure why he's Captain First. I just know that if I don't let him be first, it's going to be bad. Bad as in knock-down-drag-out-require-a-full-body-restraint-in-public-and-the-store-manager-is-going-to-come-and-check-on-us. That kind of bad.

We were going to the hospital recently (ok, back up. we're always "going to the hospital" for some thing or another - it's a fact of life for our family so we're over it now). Anyway, AB knew his way through the maze of corridors to get to the geneticist's office. WG was annoyed because he pushed past her and was first, again, his hand trailing the wall because duh, he has to be touching something. WG said, "ugh. mom. why does he always get to be first?"

"sorry kiddo. It's his thing."

"But it's not fair."

"yup. you're right. but go ahead and try to stop him."

"mom. you know I can't. He'll get mad."

"yup. he's Captain First."

She giggled and shrugged her shoulders then sighed, "yeah, that's just AB alright. Captain first."

Other "input" we use or have used:
(by "input" I mean sensory input - AB needs lots of stimulation and deep input)
1. desensitization brushing
2. swinging
3. vibrator chair
4. compressions
5. hippotherapy
6. marbles in putty
7. rice tray
8. trampoline
9. swimming
10. rubbing his head
11. weighted vest

Many people assume that persons with Aspergers have a higher IQ. This is true for some but isn't true in AB's case. It makes me frustrated that with all the media about ASDs, there are still so many stereotypes. I'll tell people that AB has Aspergers and they'll begin telling me all about the high-paying jobs he'll be able to do because he's so smart.

AB's IQ is marginally below average. At one point we thought it was just above MR (mental retardation) but a later IQ showed a composite in the 90s. AB is a puzzle because he is actually symptomatic for his ASD. His true Dx is the F-G syndrome, a sex-linked genetic abnormality, in addition to his chromosome 19 duplications. AB's development is altered, including severe (but currently mild thanks to medications) GI issues. Of course, right now we're in the wait-and-see game about his rapidly advancing, early-onset puberty and whether or not he'll end up with seizures too. He has lesions on his chest that can only be seen with a black light, he has very definite mood swings and he has learning impairments. AB's future will likely be group home or assisted living or home with mom and dad helping us out with the business in some capacity.

I don't get to talk about the challenges we have with AB because Sissy's challenges overshadow his. Suffice it to say, all on his own, AB can be a tough one but honestly, I don't mind. I'd raise more like him if I thought we could adopt again. I wish for all the world that Sissy's issues were more like AB's. Dual diagnoses? No problem. I'm on that.

But RAD?

Sinks me in a skinny minute.

Here's to my totally awesome son who,at the moment is doing just fine. If you have any questions or concerns about your own ASD kids, ask away! I love to help and share what has worked for us in the past. And now, after a very long time, I'm finally going to watch the movie about Temple Grandin.

Saturday, March 26, 2011

love is ...

I have stewed on this. Wilted cabbage simmering in a pot with peeled tomatoes. That kind of stewing. Smells a little funky, tastes a little odd, nourishes somewhat, gives you the trots in 2 hours flat. That kind of stewing.

In my head it has rumbled and bumbled, rattled and battled, shimmy-shaked and baked.

Just what IS love anyway?

Tevye and Golde have some thoughts:

The Bible has some words:
1 Corinthians 13: 4-8a (NIV) 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails.

Karyn Purvis weighs in on a sister of love:
"Compassion doesn't have a shelf life. Our kids from the hard places always need it."

Music, TV, Movies and books have LOTS of ideas about love. I think they'd all be wrong with the exception of country music because we all know country music is ALWAYS on the money about love:

but maybe you prefer the Beatles' version of love:

Then there's the OTHER side of love.  The unconditional side.  The until-death-we-do-part, in-sickness, for-worse part about love.  Some christian theologians refer to Agape love. There's the love languages. (mine is "acts of service" btw)  And of course, there's tough love 

Regarding Sissy and perhaps other RAD kids (but I won't generalize because I have NO clue how it goes for other people in their love journey when parenting challenged kids), finding how to love in this capacity isn't written or sung or expressed anywhere. No, to love a child that refuses to be loved, you have to write your own book on the matter.

Do I love her?
I weep when I think of what would have become of her if we'd chosen not to adopt her.

I know what she likes, sometimes better than she does.

I can tell by the way she breathes if she's not feeling well.

I know the moment I see her if she's happy.

I gave her favorite store my email address so they could send me spam about their sales.

I have picked up her room for her, without even mentioning to her that I've done so, just because I want it to be a quiet, comfortable place for her.

I have spent the equivalent of four straight months, 24/7, in therapy sessions with her.

I never let her run out of her meds.

I get angry when the school doesn't seem to understand that YES, she IS indeed learning challenged, even if it is only an emotional impediment to her learning ability. It's still a challenge for her.

I've read the books she likes to read, just so I know what she's reading and can have something to talk about with her.

I've read stacks of books about parenting so I can help her.

I've spent hundreds of sleepless nights worrying about her.

I've spent hundreds of nights dreaming about trying to help her.

I've spent hundreds of nights waking up from nightmares about her.

I've spent hundreds of nights crying myself to sleep because I haven't known how to help her.

I've spent hundreds of nights crying myself to sleep because I have felt like I've failed her.

I've spent hundreds of days crying and talking and trying to convince her how much I love her.

I've crocheted sweaters for her, mended torn stuffed doggie ears for her, hand-stitched worn blankets for her, replaced lost items, glued broken toys, spent hours searching for the "perfect" gifts, baked beautiful cakes, made her favorite foods, stocked the fridge with her favorite snacks, held compresses on her neck while she's vomited, washed out favorite blankets at 3 am that were covered in vomit because she couldn't sleep without them, driven back to school with lunch boxes and book bags because she'd forgotten them, brushed her hair, combed her hair, braided her hair, washed her hair, cut her hair ...

I've gotten her emergency medical attention when she was suicidal and stood my ground with hound-dogging professionals to make sure she'd gotten a bed on the psych floor. I've gone to the ER when she was suicidal and been irate when we were turned away.

I can list the meds she takes without thinking, even though it changes almost monthly.

I hold her hand when she gets her lab work done to make sure her liver enzymes are within normal range despite all the meds she takes. I gently reassure her that the weight she's gained with the meds is worth it because the meds help her mind be quiet.

I've made her wash two more times when she stank so bad you could smell her from four feet away and she raged and faked us out and pretended and still stank. I made her wash even though she raged. Occasionally I put on a swimsuit and got in with her.

She has wanted for nothing. I have provided her with everything she needs and many things she has wanted.

There isn't a stone I've not turned over trying to get her the help she needs.

After all she's done to herself and to her family, I still love her. I still have compassion for her. I still grieve for her. I'll still fight for her. I'll still want her home. And actually, after all this pondering, it has surprised me that I've come to this conclusion. I thought I had nothing left for her. I was wrong.

I'm also not wrong when I realize I just can't do this anymore if it's going to continue on the same course for destruction.

And that is love too.

It's no easy thing to admit as a parent that sometimes love is being able to say,

"no more."

And in saying so, will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?
props to my oldest sis who gave me this link eons ago and as it turns out, likes the country life too

Thursday, March 24, 2011


My mom and sis-in-law live in the country. I like it there. A lot. I'd move in a skinny minute if we didn't need to have access to resources like pdocs and therapies and such. I've always been a country gal at heart which is funny because my sisters prefer the city life.

Not me. Give me green. OK, not pine pollen green, but anything green and living and photosynthesizing. Give it to me. And give me big open spaces and wide vistas. And sky! Lawdy, I need me some SKY! Huge fluffy clouds or evil, brooding storm clouds, I don't care. Just give me sky that meets the earth in a 180 degree panoramic view and I'm happy as a clam. Just slap-my-fanny-and-call-me-nanny happy. LOVE it.

The best part about sky? Stars.

Oh.my.stars. In the country there are stars. The kind of stars where you go outside and your eyes adjust to the night light and you look up into the black of the night and at first only a few stars pop out and twinkle. Then you breathe deep and let out a slow exhale all while gazing at the sky and five hundred more stars appear and they have depth and dimension, color and variation. If you stay out there long enough you'll hear some bats and an owl, see the glowing eyes of some possums and you'll see even more stars. So many stars that the sky seems bright, heavy and almost crushing because it is so full of STARS!

And if you like to do some existential thinking (which i do), you can look up at those stars while you get a little goose-pimply chill from the cool night breeze and maybe an absentminded slap on the left arm to whap the thirsty mosquito that has considered you as his dinner and you can ponder life. Hundreds of thousands of solar systems in hundreds of thousands of galaxies in hundreds of thousands of universes all hanging among those stars. And you're sitting on a stoop, very much alive, very much surrounded by other living things so much so that the air is heavy with the scent of green and life and you think there just HAS to be more to this life than this stoop in the country. Those stars. Just look at all those stars!

Then a dog will bark you out of your reverie and someone will come looking for you because they need something and you'll snap back to reality, shuffle your aching, stiff bum off the stairs and go back in, in to life.

Sissy being gone is like sitting on that stoop in the country, gazing at the stars and thinking grandiose, existential thoughts. I feel so huge and so tiny, so capable and strong yet so frail, so full of life and also so empty. I feel like everything is out there for the taking, nothing is unavailable to me, the world is my oyster and I can accomplish anything. I feel so alive, so energized, so safe, so free.

Eventually, I'll have to go back inside.

I wish it was possible to have this vitality with Sissy as part of the picture. I wish she wanted that reality for herself. For now, I'll just enjoy the stars.

my favorite poem - which I have also sung with my college choir in what now seems like another lifetime. Ever since, I've not been able to read this poem without hearing the tune we sang it to. eight part a capella chamber music. amazing.

Choose Something Like a Star

by Robert Frost - 1947

O Star (the fairest one in sight),
We grant your loftiness the right
To some obscurity of cloud --
It will not do to say of night,
Since dark is what brings out your light.
Some mystery becomes the proud.
But to be wholly taciturn
In your reserve is not allowed.

Say something to us we can learn
By heart and when alone repeat.
Say something! And it says "I burn."
But say with what degree of heat.
Talk Fahrenheit, talk Centigrade.
Use language we can comprehend.
Tell us what elements you blend.

It gives us strangely little aid,
But does tell something in the end.
And steadfast as Keats' Eremite,
Not even stooping from its sphere,
It asks a little of us here.
It asks of us a certain height,
So when at times the mob is swayed
To carry praise or blame too far,
We may choose something like a star
To stay our minds on and be staid.

Wednesday, March 23, 2011

Stealing Every Drop from Everyone

AB bounced back to baseline with a snap of the fingers, or in his case, swing,snap, flap, hop, skip, table bump. Or something along those lines. He had wanted a mohawk for some time so he grew out his hair and Sunday night I cut it for him and by Monday morning he was angry and practically in tears fretting about it and wanting it buzzed off. I asked him to give it a day. By Monday night I was buying a trial size spiking glue. He refused to let me take a picture of it spiked up but my son looks cool and is happy once again. Good golly if this cycling isn't completely different than Sissy's! I don't know how I'm going to be able to keep up with it. Maybe I just won't; maybe I'll take a "let it be" kind of approach.

WG passed the first half of the testing for the accelerated learning program but not the second half so they'll test again. She's got big things coming up. This Sunday is the cantate musical at church that she's been rehearsing for what seems like a decade. In April she'll be the dinosaur for the school play and in May she has a dance recital. She kept a secret for a week about that one. A few weeks back her dance teacher told me that if she kept working hard she'd get moved to the front line for ballet. Currently she's front and center for tap. I told WG to work hard. That was the last we'd heard about it until this Saturday morning, as we're going out the door for dance, WG just nonchalantly throws out, "oh yeah, mom. I'm on the front row for ballet too."

"What? Really?" She chuckled a little and waved her hand like it was no big deal. "When did you find out?" I begged.

Still cool as a cucumber, "oh, last week. I just didn't tell you."

The business is running hard right now, our busiest time of year as most of our clients are preparing to rent homes for a certain extremely important and prestigious golf tournament. It's kind of funny to watch rich people come all undone and get all flustered and fidgety. Toss in the green rain, AKA: pine pollen, and it's just gross out there. I mean GROSS. I'm hoping The Dad doesn't get the notion to start taking pictures anytime soon because I'm standing on ladders with a face mask so I can breathe. Stupid pollen. I'm miserable!

Thinks are looking up, actually.

I don't miss the point that things look up when Sissy's not here.

It makes me so angry that her issues cause that much drama and chaos that 300 posts and I talk about the other four people in this family maybe 10% of the time. It makes me sad that she has to manipulate that much, so much so that she makes our family completely dysfunctional. It makes my heart ache when I realize how much pain, trauma and anxiety she's made us all endure. It causes my head to spin when I realize that she's not showing behaviors at the hospital and will get herself a green card to come home and ... do it all again. Which makes me angry all over again.

I can't go back to hell. I just can't. At what point does the good of the four out weigh the marginally better for the one? And truthfully, there is no "better" for Sissy. She doesn't want it. Isn't seeking it. Can not even try to motivate herself to be better. It's too much damn fun for her to make us all miserable. I won't have it anymore.

It's so different this time, with her being gone. Last time my emotions were so tied into whether or not I'd been an adequate parent, done enough, tried different tactics, used the right therapies, gone to the right doctors and therapists, juggled the right med cocktail. This time I KNOW I've done it all. All of it. There is no stone I've not turned over looking for a solution for healing for Sissy. This time it is glaringly obvious that I'm adequately parenting another disabled child and a very bright, vivacious child - two children with diametrically opposed needs - with flair. We had one upset last week and 25 minutes of tantrum from both of them while The Dad and I held our ground (and giggled a little at their silly pleas for absolution) and we bought a week of good behavior, hugs, love, politeness and unrequested assistance. That wouldn't be possible if we were bad parents.

No, it's not The Dad or me or the business or AB's issues or WG's mad-skills. It's Sissy. She'll either choose to change, or not. I actually have a lot to say on this issue but I'll save it for another post. Today, it's about the four of us: healing, resting, enjoying peace and quiet, playing, giggling, hugging, loving, and discovering that we have gobs and gobs and oh.my.goodness. insane amounts of time and energy because Sissy's not stealing every drop from everyone.

Sunday, March 20, 2011

Seeking Serenity

I'm actively attempting to decompress. Today is day X since Sissy went to the hospital. I say Day "X" because I don't want to take the effort to count it. I don't want to make the effort to count it because then I'll be thinking about Sissy. I don't want to think about Sissy because I'm desperately trying to decompress.

The thing is, she's just going to come home and go right back to her crap so instead of thinking about how she's going to come home and go right back to her crap, I'm thinking about other things, on purpose. Every time Sissy comes to my brain, I forcibly change the thought in my head. I have to. I must decompress or I won't survive her return.

The best way to explain it is we've been in a tempest with 30 foot waves crashing on us for years on end. Even the last time she was RTC wasn't a respite because we had non stop phone calls and face-to-face therapy which meant 6 hour round trips in a day ... no respite. In addition, we hadn't gotten to the place emotionally where we could say, she's going to do what she's going to do and we are not responsible for her choices anymore.

Can I just say, it was very hard to get to that emotional point? It was extremely difficult to put aside the fact that she's an adorable, short, chubby 11 year old and get to the heart of her issues. She's not well, will never be well, can not understand the dynamics of a home environment and will be on a crash course for destruction in this environment no matter what we say or do.

It's freeing to be on this side of the fence. However, it is impossible to prevent the 30 foot waves of her tempest from crashing down on us when she's here. So that means I have to make every effort to float on a placid lake every second she is away. I have to close my eyes and concentrate on the smell of the air and the way it sounds as it whistles past my ears. I have to breathe slowly and deeply and take in the green earth around me. I have to train my thoughts on the sounds of birds and bugs, slowing time to a stand still so I can reach out and touch every particle of serenity. I must be a sloth, hanging from a tree for hours on end without moving a muscle and just be without excuse, without purpose, without plan.

I pulled back from the virtual world so I could capture the essence of calm, peace and serenity and attempt to retrain my cells to function without 24/7 high alert adrenaline surges. My cells have screamed for it, given me headaches beseeching the intense psychological impulses of emergency. I have denied them and gone to bed early or taken naps or quilted. Oh, how I have quilted! Just look and see ...

Coasters - prize for my 100th follower: Mommy needs therapy!

Getting started on the March Panel

 Making progress

 the two blocks
12" finished nine-patch square: jacob's ladder with opposing directionality

alternating the rows of blocks after assembly creates a basket weave pattern
design is original

Here's a face we've not seen much of lately.  Before I left for Orlando, AB was in a manic phase.  Now he seems to be in a depressive phase.  We've done the lab work for his hormones and see the pdoc again next Thursday.  I'm hoping we can make some alterations to his meds and get to the bottom of this early-onset puberty because boy oh boy do I miss this face.  I think I prefer manic over depressive.  NOT fun.

Wednesday, March 16, 2011

So very different.

I had no idea that the post "Layers of Loss" would be so huge. And by huge I mean colossal. My inbox has been jammed with positive affirmations. Some readers are blessing me with packages just because. The article has been picked up by ATTACh.org and has been recommended to a few other parenting trauma agencies.

In short, I'm overwhelmed.

When I wrote that post I wasn't thinking I know, I'll write something poignant that will get straight to the heart of my readers and generate a limelight that I can bask in but that is exactly what I've done. It's as though I've extended the bliss of Orlando for an extra week.

I just can't hug you all.
*attempts to hug the laptop*
Nope. Not the same.

The irony of all this attention and praise is that because parenting trauma is so challenging and in-your-face everyday, it is incredibly difficult to receive compliments. There are a few nuggets I've picked up from all the years of attending therapy sessions with Sissy. One of which is that it takes six positives to undo one negative.

Well, I've had ten years of incessant negative from Sissy. Doing some math with that therapeutic postulate, it will take sixty years to undo the damage to my psyche. And when I put it that way, it helps me absolve myself of guilt. Yes. I feel guilty that I can't absorb these accolades.

Really. I can't.

It's like people are trying to throw waded up, water-soaked napkins at me while I dance on a table... they won't stick. They just bounce off. I guess I can consider it one more layer of loss then: the inability to accept that I'm a cool person, despite what my child does or says.

Sissy figuratively shouts in a bullhorn all day you suck! you suck! you suck!
I guess I simultaneously need a cheering section on the other side shouting back through bullhorns you rock! you rock! you rock!. And then if ya'll could just go ahead and do that all day, every day like she does, I might begin to believe that I rock, not suck.

Sunday, I filled in for Sissy at her cookie booth. Her girl scout troop had snagged the last day for cookie sales at one of the busiest grocery stores in our community. Fortuitously, I stuck the I am not alone rock in my pocket. Good choice. The other moms and daughters were so cheery and plucky and ... blech. nauseating.

*enter vomit sounds here*

I just kept rubbing my rock in my pocket so I could feel the engraving on my thumb. Inconspicuously of course. I accept that I'd look a bit like Gollum from LOTR, obsessing over the ring if I'd held the rock up under my nose and rubbed and rubbed while chanting in a gravely moan, my precious even though that's exactly what it felt like I was doing. I took big cleansing breaths and smiled. Even said, "how nice" a few times. Two hours with NT moms and their NT kids. Oye.

After so many layers of loss, life and humanity looks indelibly different.

So very different.

Saturday, March 12, 2011

The wall

I anticipated to hit "the wall" on Thursday.  But thursday came and went and no wall. 

The wall showed up on Friday instead.

I got WG and AB to school despite being insanely dizzy and I went back to bed. 4 hours later the dog was whining to go out and therefore was the ONLY reason I rolled myself out of bed. The fact that I could smell myself became the ONLY reason I managed to waddle myself to the shower. The fact that my belly growled was the ONLY reason I managed to eat. An email from an Orlando mom made me cry. (thanks a lot!)

I'm exhausted. Beyond exhausted. I'm done. Sissy called Thursday night [1] and I refused to talk to her. I don't want to think about her but the nurse at the hospital called needing verbal permission to change one of her meds. I don't want to think about her but then her therapist called Friday morning to see how she was doing. I don't want to think about her but then I dreamed about her the whole four hour nap. I don't want to think about her but her room needs to be weeded through because wow, she has a lot of crap in there. (i'm not kidding, she'll be a hoarder in her adult life. mark my words.) I don't want to think about her but I've just typed an entire paragraph about her.


I can't believe how immediately the four of us have returned to "normal". I can't believe how immediately our home is peaceful. I can't believe how much friggin' time we have!!! I was bored Thursday night, actually said the words, "I'm bored" and then laughed at the irony. Bored as opposed to being blitzed out of my mind because of one more rage fest a la Sissy. Seriously. Bored. *shakes head at self*

I miss all the beautiful women I was with this weekend. Why don't all of you live HERE??! *I'm flipping you all the bird because I'm mad at you for not living next door*

I didn't plan it but I had a session with my therapist at 2 on Friday. That was fortuitous. Actually, it makes me proud of myself for internally and subconsciously knowing what I need and getting that need met for myself. It is impossible to relate how often I put myself last and usually forget about myself altogether. I takes taking a long, hard look in the mirror to jar me back to reality. (Thank God only Herman Munster breaks mirrors when he looks in them because I've probably come close to that a few times.)

AB is not ok. I'm not pressing him, I'm just going to wait out the tide. Either he'll process his own grief about Sissy or he'll need my help. If I dive in now, I'll make it worse. I think he's conflicted about her hospitalization. He verbally says that he just wants her to get better but there's no way he isn't cognizant of the immediate decrease in sensory issues for himself and somewhere in that head of his, he's drawing the connections ... and is probably mad about it.

WG is giddy. She doesn't want Sissy to ever come back. Except that thursday night she lamented that now she doesn't have someone to play with. Not that Sissy was a whole lot of fun but it was the fact that WG had another female buddy. we've put one of her lovies in the van, a permanent car buddy for her, as a concession.

I'm somewhere in between the two of them. The Dad hasn't voiced his status yet.

The wall hurts.

Next will be the panic attacks. They came last time Sissy was at RTC and never went away. I'm not looking forward to that. I think I'd rather sit at the base of the wall seeing stars and birdies for a while than progress onward to the panic attacks.

Oh what these ill children do to their families. Words will never express it.

[1] ugh about that phone call. sissy hates the phone. rages about the phone. last time at RTC it would be pulling teeth to get her to talk on the phone. So she called us?!?!? And then lied to the staff (dad was listening and she didn't know it) and I had bells and alarms and whistles and an immediate increase in my pulse. She's trying to play a game and I'm not playing anymore.

Friday, March 11, 2011

Layers of Loss

"layers of loss" said the wife of the rockstar. So many layers of loss.

Talking about Orlando in this venue feels a bit like blabbing about sex at the water cooler the next morning. We shared so many intimate moments, tears, hugs, laughter, understanding nods, that it seems wrong to write it all down. Until blogging, I had nothing, no one save but one IRL friend. Isolation doesn't begin to explain how hard it is to parent a child that refuses to be parented.

I didn't cry much, just a few weepy moments usually followed by laughter. I thought I'd be a bawling basket case. I kept looking for that one profound moment that would rock my world and instead found that it was just a steady stream of acceptance, unconditional love and understanding. I even enjoyed a few moments of rockstar bliss myself; blown away by other women's exclamations of joy at finally getting to meet me and how much reading my blog has helped them. Really? I asked myself. I never thought of myself as a blogger with a purpose to help others heal. I've always just been no guts/no glory about my blog: lay it all out for the world to read and know because it has to be known.

Adopting trauma will bring layers of loss.

It wasn't until Sunday night, late and after some side-splitting hilarity, when a few women straggled into our villa, (gals I had yet to meet because there were so many it was hard to hug them all) that I began to see the layers peeling back, the depth of pain we endure; the vastness of what we have surrendered to the cause of raising children that already have history. And that's when rockstar's wife said it, the profoundness that has stuck with me and resonanted like a tuning fork, humming a perfect C frequency impossibly long.

Layers of loss.

For many adoptive moms, the first loss comes from infertility. Then you pick yourself up and resolve to parent anyway. You adopt.

Layer two: the process of adoption is tough. There are no secrets you can hide, it is like being interrogated by the CIA. For international adoptions, the wait is impossibly long with ever-changing bureaucratic red tape to wrestle with. In foster adoptions parents are rarely given an accurate social history, sometimes intentionally so a particularly troubled child can be pawned off on unsuspecting souls.

Layer three: dying to yourself, the pollyanna part of you that believed, even remotely, that adoption was everything lifetime movies say it is. Dying to your naivety. Dying to your pretty home and your pretty life. Dying to being soft-hearted on the outside. dying to the truth that to survive, you have to wear an ugly, scaly alligator skin every day.

Layer four: the loss of the love from your child. This one has been particularly hard for me. verbally I can say without emotion that Sissy will likely never attach but it is damning and compounding when other moms tell me how their children are attaching. I am glad for them but on the inside I want to scream. I'm doing everything they are doing and still, Sissy figuratively flips me the finger (give it time. I'll eventually get the actual gesticulation.)

Layer five: the loss of the roll you intended to play as a mother. Therapeutic parenting is a horse of a very different color. In no way does it resemble the mother figure you imagined yourself to be. It requires skill, preplanning, chess strategies, dying to self, stuffing personal emotion for the best interest of the child. It looks very strange to the public world and in a nutshell can be summed up as "caregiving" as opposed to "mothering".

Layer six: the loss of friendships because they don't understand therapeutic parenting. and for some, the loss of family relationships for the same reason.

Layer seven: for some, the loss of a marital relationship because daily trauma stresses the entire family unit, often irrevocably.

Layer eight: loss of self. Another one that is fiendishly evil in my personal life. It is a struggle to remember who I am, and who I am allowed to be regardless of what is going on in Sissy's world.

Layer nine: loss of dreams. I'd love to adopt again. With Sissy like she is, we'd never pass a home study. I'm also terrified that another child will come with equally damning history.

Layer ten: loss of the right to blame. what good would it do me or my daughter if I take out my anger and grief on her because EVERYTHING, every loss so far, is because of her issues? Similarly, what good does it do me to blame the first parents? no one wins when you blame. It feels good to raise a fist and holler expletives but only for the twenty seconds of time it takes to do that.

Layer eleven: the loss of financial stability. I can't imagine working while parenting medically disabled children. I have no savings, no retirement, i live in a tiny home that is as old as I am and is falling apart. The Dad drives a truck without AC and our summers are ungodly hot. It scares me that we have no financial cushion. Some people start out their adoption circumstances financially stable but it's a double entendre: if you are wealthy enough to support your family, you are wealthy enough to pay out of pocket for the hours and hours of therapy your child needs (and in some cases, residential treatment or foster placements). At some point, your ill child will bleed you dry financially.

Layer twelve: loss of community. I've been blasted by my community several times because I like to have a voice and advocate for impaired children. It's not fun to be called 'that mom of the retard kid" on syndicated radio. It's even less fun when the editorial columnist that blasted you in the paper on wednesday is sitting two rows ahead of you in church on Sunday.

Layer thirteen: loss of religion. This one still hurts too bad to talk about. I got into adoption because I thought it was what God wanted. I've got nothing but spit in my mouth to say about that now.

Layer fourteen: loss of hope. for some moms, their children just have to be removed by whatever capacity available. and when those children actually do well in their new environments, it jabs again because the question lingers what didn't I do right? What could I have done differently? and for the moms that hang on despite train wreck after train wreck the hopelessness crumbles into I'm doing everything everyone else has done and more. why isn't it working? why is it unendingly hard?

Layer fifteen: loss of photos.  I've talked to a few other women that have the same photoless years as I do.  I think it's a common phenomenon for cancer patients too.  The last thing I want to do is memorialize this time in our family's life in a photo.  So I don't take many.  And we certainly haven't done a family photo in years - we won't even discuss the trauma of trying to get Sissy to cooperate.  I also don't look through old photos.  I don't want to remember.  All of the pictures of Sissy bring back memories of that moment in which she was making it miserable.  Instead of it just being a picture, it's a historical document of rage, pain, anger, anguish, grief, despair, sorrow, loss.  I didn't even take pictures in Orlando.  Too hard.  It's just too hard.

Layer sixteen: loss of connection. There is a psychological ideation in alcoholics anonymous called terminal uniqueness. Newbies to a meeting often leave believing that they are nothing like the other alcoholics, that there is nothing the group can do for them because they are "different" than everyone else. This ideation can translate to other addictions and life traumas. 68 women gathered to hug, laugh, love, learn, cry, live, breathe and connect. I'll wager that 68 women went home by themselves and still had a part of them feeling alone. We were given rocks engraved with "you are not alone" and we're not. But none of our stories were exactly like the others. None of our therapy plans will exactly work for the others like it has for us. The danger of terminal uniqueness is that it is terminal. We must force ourselves to stay connected or we will wither and die and that means, we must accept that we are all in different places and in the same place simultaneously.

Adoption of traumatized children is isolating and debilitating, it requires that we grieve much and in little bits every day, it steals thousands more than it gives, it alters our perception of humanity, it forces us to think outside of the box and then accept that outside of the box is the safer place to dwell, it demands that we surrender self-will for the greater good, it expects perfection every day, it strangles, chokes, punches, bites, kicks, hits and screams:

it is layer upon unrelenting layer of loss.

Wednesday, March 9, 2011

Living IS possible

She cried a little, but mostly out of habit. I sent her to her room to think about it while I showered and then had her help pack. This was different than November 2009 when I packed her and piled her into the van, drove her 3 hours to the RTC and told her after intake that she was staying. In that instance, it was the best option. This time?

This time after she had a 10 minute pout session in her room she was smiling, singing, happy, relaxed and content; the most contented I've seen her in months. She's actually at a hospital this time and it is an hour closer with in-person therapy sessions only mandatory once a month.

Sissy ... is gone.

I met a few of her floor mates when we were in the clinic doing vitals. Oh yeah, these girls are her speed I thought. I met the therapist and M.D. briefly. Oh yeah, these women know their stuff. No triangulation happening here. A much more appropriate placement providing significantly more clinical care.

Sissy ... is gone.

I spent the night with my cousin who lives just a 45 minute drive away. It was nice to crash. I'd driven straight home from Orlando, repacked my bag, refueled the van and departed 12 hours after I'd returned home. My eyes were wiggling in my head from all the road time. And let's not discuss my achey-breaky bum.

This morning I returned to the hospital to do a two hour intake on Sissy's social history. I spared nothing and the therapist only flinched a little when I told her about the dissociations, multiple personalites and schizophrenic activity we'd seen in the last six months. She didn't screw up her nose when I told her that at this point in the game, I educate the professionals. She chimed in, "which confounds your struggle because we're the ones that are supposed to help. and we can't."

Wow. Yeah.

I explained that at discharge, they will send Sissy home to a vast wasteland; unsupported, no respite, no therapy, nothing. I told her how we are washed up, at the end of the road, that the only choices left are to consider placement of some form. She still didn't flinch.

This chick's good I thought. she's seen crap.

She was impressed by my ability to assume just a caregiver role and to be emotionally OK with that. She was glad to hear that we've already processed so much of our grief about Sissy. She was ecstatic that I'd just come from a weekend with other women that have kids like this (RIGHT? Because she has NO idea how awesome it is to be with women that have BTDT. She can say all day how awesome it is but she doesn't KNOW know.)

She even admitted that her role as a professional never compares to a parent's role because they are staffers with hours and can tap out when a patient is overwhelming them. She understood that being "in it" 24/7 is a whole other ball of wax.

Sissy ... is gone.

How long? The next huge question on everyone's lips. AB wouldn't quit asking until I'd given him a number. I don't really have a number. The issue becomes just how hard Sissy plays the "perfect patty princess' card. No behaviors = no treatment necessary, regardless of social history. The therapist knows this is how kids do. It can't be helped. Sissy can't be forced to show her crap. And Sissy knows how to hide it, has the patent on how to hide one's mental illness crap.

Driving home was euphoric despite the deluge that forced me to get off the interstate twice. Picking up WG and AB was exciting. "Oh dear!" I pretended to be worried, "I forgot to bring Sissy home!" WG looked puzzled at first and then as if on cue we both shouted, "because she's at the HOSPITAL!" then squealed and laughed and giggled and hugged and kissed. So much fun.

Sissy ... is gone.

Ten tons has been lifted off my shoulder. I have insane amounts of energy and time as if an hour has been elongated to 120 minutes. I had no clue how much Sissy's issues were stealing and oppressing. Such an eye opener.

Sissy ... is gone.

I can't even fake sadness. I haven't been this happy in a very long time. WG and AB were delighted. The Dad came home to super on the stove and coffee in the pot. No one was screaming. I wasn't stressed. Homework was done. AB and WG were engaging in free time activities. Magic.

Living is possible ... if Sissy is gone.

Monday, March 7, 2011

I went to Orlando and all I got was...

I went to Orlando and all I got was ...

A pantry and fridge full of food! HOLY CRAP! Thank you! The fridge and pantry have never been this full. Ever. And it was desperately needed.

Sunday, March 6, 2011


These women are friggin' amazing.

Why the hell does society roll our red carpets 
for movie stars?!?!

I've met the world's most:

women that have ever walked this friggin' earth
and they all deserve


I love you ladies!

Wednesday, March 2, 2011

So what DO we know?

Crap has gone down this week! If I stop for a second and try to assess everything that has happened my mind goes blank. The last eight weeks I've lost time: days, weeks. I have trouble keeping track of who, what, where and when. It's all just been one big blur of rage hell and it has exhausted me. I don't like being this tired. It feels pointless. Exhaustion due to mental and emotional stress is not cool.

So I'm going to try to recap the last 8 days.
1. Last Tuesday we were told that PDD-NOS Dx meant Sissy was being dropped from her therapy team. It also meant that she could not reauthorize for CBAY waiver. The reason being that neither agency is licensed nor certified to work with spectral children beyond doing skill building activities. After much panicking, phone calling, emailing and texting, both agreed to stick with us until they had successfully handed our case off to the next capable agencies.

The conundrum is that there are no other agencies in our region that we could work with.

2. I panicked and sobbed and then decided to just wait and see. My therapist reminded me that although it sucks that EVERY.SINGLE.DAY I never know what is going to happen and that I have absolutely no control over any of it, that typically things change on a dime and sometimes for the better.

3. Friday through Sunday, Sissy raged crazy crap. OMG she was blitzed.

4. CBAY team called and confirmed I will meet with our state's parent support network coordinator to begin training to be the liaison for our region.

5. Yesterday morning pdoc was sympathetic and apologetic but said his clinical opinion is to agree with the other documentation: Sissy is PDD-NOS in addition to everything else *roll eyes*. This kid is going to have every freaking Dx in the DSM before we're through.

He said he had a few other ideas to research that would get her some support and assistance when she got to her CBAY anniversary date.

6. Yesterday afternoon Sissy's therapist texted that her PRTF was approved. We texted back and forth and I put in a plug for our first pick RTC which is more of a hospital setting. CBAY team agreed.

7. This morning Sissy raged crazy psycho crap and the therapist got confirmation that a bed would be held at the RTC we requested until next week when I return from Orlando.

8. This afternoon, Sissy raged crazy psycho crap and after a nine month wait, we finally got to take AB to Sissy's pdoc. HOORAY! He is on the board to start a local private school for autistic children K- age 18, projected opening date is fall 2012. The first ever for our region! WOOT! In addition, he has a bunch of other ideas to address AB's mental and physical health issues beginning with addressing AB's rapidly advancing early onset puberty, his GI and IBS issues and his developmental Dx. I left with no med changes (for now) but a blessing to dose Vistaril as needed, a lab order to check a bunch of hormones and blood levels adn a promise that he would call AB's developmental specialist to staff his case. There are some evasive tests on the horizon for AB but for the better. I was reminded to be alert for seizure activity with the introduction of puberty as all three of AB's Dx have a proclivity for seizure activity.

Right now I think I'm more elated about the help for AB than I am about Sissy's placement or going to Orlando. AB's needs have long been subverted by Sissy's nonsense that it has made me angry. Of all the things we've been through and endured with Sissy's challenges, the inadvertent neglect of AB's challenges is what has made me mad as hell. Every time I've sat through a meeting to discuss Sissy's case I ended EVERY SINGLE ONE reminding the agencies that I still had AB's needs to contend with, that his health concerns were being ignored because hers were so polarizing that they became paramount.

The timing can't be ignored. Hot on the heels of Sissy being out of the house, AB will finally get the medical attention he has long needed.

THIS is what has made me the happiest. Finally, my son will have his day.

On a side note, WG got a white board for her bedroom for Christmas and every night I write a "secret message" on it when I tuck her in. Tonight's message said Very soon life for our family will be MUCH better. WG said, "yeah, but mom. Sissy will NEVER get better. She's always going to be this way, forever."

"You're right."

"So... how can it get better?"

"She may never change but that doesn't mean she'll be home the whole time."

A slow smile crept across her face. "So she's leaving?"

"When I know, you'll know. But it will be soon. OK?"


So what DO we know?
1. March 6, 2010 was her discharge from RTC last year.
2. She'll be gone next week directly after I return from Orlando. Just a few days past her anniversary discharge date.
3. She'll stay at RTC according to her medical need (ideally).
4. The dollars game will have a huge impact on her length of stay and according to her therapist it may not be much longer than three weeks.
5. CBAY may or may not reauthorize for another year after Sissy discharges from RTC pending her Dx and psych eval at discharge. If PDD-NOS is still on her chart, the gig is up.[1]

[1]there are still a few cards left in the deck for us to play. She'll qualify for skill building therapy with her current therapy agency, 1.5 hours/week in home. We can also opt to work with LIPT, an interagency that works with all professional levels of mental health support. Apparently using LIPT, it gets us past the "gate keepers" for NAMI and MHDADD. There is still the option of declaring her ungovernable, seeking long term placement or group home. Without an agency working for us, pursuing the legal loophole for abandonment is not likely.

Tuesday, March 1, 2011


text msg: "PRTF has been approved"

OMG! that is WOW!
What does it mean?

It means state medicaid has decided to pay for RTC. Now we wait to hear about where, when etc. She'll only get a few weeks at best but


That means we can jump back in on a fresh year with CBAY.


More to come but for now that's all I got.