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.
UGH
UGH
UGH
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.
Saturday, March 12, 2011
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.
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.
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.
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
orlando
omg
These women are friggin' amazing.
Why the hell does society roll our red carpets
for movie stars?!?!
I've met the world's most:
AMAZING
GORGEOUS
GLAMOROUS
HILARIOUS
FANTASTIC
SUPER-DEE-DUPER
STUPENDOUS
HEROIC
women that have ever walked this friggin' earth
and they all deserve
NOBEL PRIZES
every.last.one.
xxoo
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?"
"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.
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?"
"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
DRUM ROLL
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
DRUM ROLL
That means we can jump back in on a fresh year with CBAY.
SNAP!
More to come but for now that's all I got.
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
DRUM ROLL
That means we can jump back in on a fresh year with CBAY.
SNAP!
More to come but for now that's all I got.
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