It has been requested that I extend the deadline for OUT CRAZY THE CRAZY contest.
Hmmm... let me think about it ...
OK!
If you're just cluing in, go HERE and HERE
Our first (and only entry) is compliments of Marythemom which, I must add, is pretty gosh darn crazy.
Maybe you feel like you've never done crazy stuff to keep from going nutty raising your RADs. But you know another blogger that has. One word: LINKEROO!! send 'em on over here so they can enter.
And this just in, my I-think-best-when-I'm-in-the-shower brainstorm, for those of you who don't think you're crazy, next week's contest to win another set of Christmas coasters: MY RAD HAS LOST HIS BRAIN contest!. Tell us about the crazy things your RADlet has done.
Tuesday, November 30, 2010
Monday, November 29, 2010
OUT CRAZY THE CRAZY CONTEST!
I haven't had anyone post their crazy stories yet. So here's some proof that I'm crazier than you. Here are some crazy pieced quilt squares. Proof that my cheap 15 year old machine from JCPenney can quilt insane nine-patch nine patches without foundation piecing!
Enter the contest and win these festive coasters. They are bundled with a pretty ribbon and in the manila envelope waiting for an address to be mailed to!
Go HERE!!!! to read how insane I am. Scroll to the bottom of the post for contest rules and instructions.
NOW GO GET CRAZY!!!!
Arrowhead Star with sashes and posts - finished size 3.75 inches square
Yes. I'm insane! 9-patch block - finished size 4.5 inches - nine-patches/snowballs
Click on the image to enlarge and get the full affect of these tiny nine patches!
Click on the image to enlarge and get the full affect of these tiny nine patches!
THE PRIZE!!!
Enter the contest and win these festive coasters. They are bundled with a pretty ribbon and in the manila envelope waiting for an address to be mailed to!
NOW GO GET CRAZY!!!!
Sunday, November 28, 2010
Out Crazy the Crazy CONTEST!
I finished it on Thanksgiving day and now, three days after Thanksgiving, it is hanging up. Sadly, the picture doesn't show the quilting but I'm looking at it while I type this and I can tell you, it looks pretty.(sawtooth star)
Thirty minutes ago I sat down, after feeding everyone and just as I took my first bite of turkey sandwich, Sissy says, "Mom. What does caffeine look like alone?"
I don't know how she does it, or why. I can't even tell you if it's intentional or just extremely poor timing. I certainly can't certify the crazy crap that comes out of her mouth. I can tell you only this. When the crazy comes out of her mouth, I ignore her. Who can answer these insane questions? "Not I," says the the cow. "Not I," says the dog. "Not I," says the cat. "Nor I!" shouts this mother!
Last night I took the opportunity, after a very LONG drive home, Sissy and AB going nutso giddy, to send some crazy back her way. While playing outside at Grandma's yesterday afternoon, she decided to pick a rose off the rosebush, apparently it was a gift for me. Then, as we packed to go, she decided to put the bloom in her hair. Sometime on the trip home with all of the insanity happening in the backseat, Sissy decided every petal of that rose needed to come off and be dropped on the floor and seat, left for the clean-up fairy to come and clean it up.
I discovered this petal palooza when I returned to the van an hour after our return home, to unpack. I opened up the side door and voila. Petals. Everywhere. I breathed a sigh and gathered my wits. *think, think, think* Ok, I'll just have her suck it up with the handvac. whatevs. i won't dissect the RADical connotations. I just want the flower cleaned up.
I went to her room, she was already in pajamas. I handed her the handvac and said, "Do you know what I want you to do with this? Here's your hint. I've just returned from the van and noticed a mess."
"There's petals everywhere?"
"Yep."
"oh."
"It's cold outside, i suggest you put on your robe before you go out. Thank you for cleaning it up without raging." (I threw in that last bit as a Don't-TRY-raging-about-this)
"you're welcome."
o.O
Two minutes later she emerged from her room with her robe on. That is to say, from the front, it was closed and sashed. From the back, it is hiked up all kinds of crazy, her bottom hanging out, the sash haphazardly tied about her rear. We've had discussions about her unwillingness to put on her clothing correctly. The robe being the most ridiculous offender to her come-what-may attitude about attire.
"Um. Sissy. Your robe is ..."
"...WHAT!?"
"*ahem* Well, if you want everyone to see you that way, leave it. OR, untie your robe and fix it before going out."
the rumblings of a rage were in the back of her throat. Somehow we managed to get through all of the put-down-the-handvac-untie-the-sash-pull-down-the-robe-over-your-butt-retie-the-sash instructions without an all out war and she was out the door harrumphing at the injustice of having a mother that gives a flying flip. And that's when I got crazy.
I dashed into the bathroom, stripped, threw on my pajamas and put on my robe. Only I made sure my robe looked perfect from the front and absolutely idiotic from the back. My granny panties hanging out, my robe hiked up above my waist, my sash looped UNDER my derriere. I made it to the kitchen just as Sissy was putting back the handvac.
"Thank you for putting that away correctly." I said with a silly grin. Sissy looked up and saw only my perfectly tidy front. "Just one question." I snickered and turned around, bending over for full affect. "Is there something wrong with my robe? I'm getting a draft on my bottom." I patted it for full affect.
Sissy grunted at me, groaned and then growled. "UGH! MOM!!!!"
"What?" I turned back around, looking at my front. "I just don't understand it." I feigned ignorance in my best Snow White voice. "The front of my robe looks just fine." I cinched the sash tighter to prove the point.
"yourrobeiswrongintheback" she mumbled to the ground.
"Oh? What should I do?"
"PULLITDOWN!!!YOURBUTTISSHOWING!!!!!" she hissed at me.
I turned around and did as instructed so she could witness what I was doing to make my robe correct. "Oh yes, you're absolutely right. That's much better. My bottom is nice and toasty warm now. Thank you!"
more grumbling. "Well Sissy," I turned around and faced her, coming within her invisible comfort zone as I knelt just low enough to be eye-to-eye. "That looked really dumb, didn't it?"
"yes."
"I bet you would have laughed at me if you weren't mad."
grunting.
"You should have. I looked stupid. I looked like an absolute idiot."
glaring.
"When I ask you to fix your robe, it's because I don't want people laughing at you. I don't want YOU to look like an idiot."
"but, but, BUT!!!..."
"you've told me it makes you really mad when people laugh at you. Right?"
"yes."
"So as your mom, I'm trying to help you so people don't have a reason to laugh at you. i do this because I care about you. I care what you want."
grunting.
"Do you know how to put your robe on correctly?"
"yes."
"So ... if you choose not to, then you're going to look like an idiot, aren't you?"
"yes."
"and people will laugh."
"YES!"
"Then please fix your robe correctly. I ask you because I care. OK?"
she nodded her head.
"and if I ever look that stupid again, go ahead at laugh at me. I'd deserve it."
half-hearted smile.
comments are open to anonymous
1. in Comments tell us YOUR craziest out-crazy-the-crazy story
2. if you choose to tell your story on your blog, please link this post on your blog using this url: http://peaceinpuzzles.blogspot.com/2010/11/out-crazy-crazy-contest.html
Then put your story link in Comments here
Then put your story link in Comments here
3. Stories will be received until midnight Monday, EST.
4. Stories will be linked or reposted on this blog for the purpose of voting
5. voting is open to all readers, voting ends midnight Wednesday, EST.
6. Winner will receive a quilted set of four Christmas coasters!
Wednesday, November 24, 2010
Boston
Massachusetts General Hospital called today to do a phone interview. They were gathering history and psych evals on Sissy to see if she qualifies for any of their research programs in the pediatric psychiatry unit.
Boston is a long way but if it means we get help for Sissy that my stupid state can't provide, so be it. I'll figure out the semantics later.
Happy Thanksgiving to all my U.S. readers!
Boston is a long way but if it means we get help for Sissy that my stupid state can't provide, so be it. I'll figure out the semantics later.
Happy Thanksgiving to all my U.S. readers!
Tuesday, November 23, 2010
one year
Today marks a year from the day we brought Sissy to RTC. 100 days of respite is now what I consider it.
It didn't help Sissy. I can't really say it made things worse either. At this point, we have reached the regrettable conclusion that Sissy really doesn't give a crap, it literally does.not.matter.to.her either way. Love the stuffing out of her? She'll rage. Completely ignore her? She'll rage. Find the middle of the road? She'll rage. So what's the point?
She is so emotionally detached and indifferent toward us that we're numb. My friend's nonverbal autistic son is more demonstrative in his emotion! Sissy couldn't care less if we were here or not, she cares only that her needs and demands are appropriately addressed. That is, if we address them by HER definition of appropriation.
A year ago I did what I thought was the most difficult thing a mother could do, I committed my child to a psychiatric facility. A year later I'm now doing what I consider to be the most difficult thing a mother can do, I'm attempting to parent a child that doesn't want my parenting.
A year later I've learned a lot and Sissy has learned nothing. A year later I've changed a lot and Sissy has changed nothing. A year later I'm more tired, more emotionally distressed, more bedraggled, more anxious, more worried, more stressed, more traumatized, more angry and more hopeless. A year later and Sissy is still a blank, emotionless droid that rages for hours when she doesn't get her way.
A year later and it's thanksgiving again. A year later and I'm still having trouble getting through my pain and sorrow to find things to be thankful for. A year later and Sissy still doesn't know what it means to be thankful.
One year later and RTC, IFI and CBAY or not, Sissy's issues are worse, not better.
It didn't help Sissy. I can't really say it made things worse either. At this point, we have reached the regrettable conclusion that Sissy really doesn't give a crap, it literally does.not.matter.to.her either way. Love the stuffing out of her? She'll rage. Completely ignore her? She'll rage. Find the middle of the road? She'll rage. So what's the point?
She is so emotionally detached and indifferent toward us that we're numb. My friend's nonverbal autistic son is more demonstrative in his emotion! Sissy couldn't care less if we were here or not, she cares only that her needs and demands are appropriately addressed. That is, if we address them by HER definition of appropriation.
A year ago I did what I thought was the most difficult thing a mother could do, I committed my child to a psychiatric facility. A year later I'm now doing what I consider to be the most difficult thing a mother can do, I'm attempting to parent a child that doesn't want my parenting.
A year later I've learned a lot and Sissy has learned nothing. A year later I've changed a lot and Sissy has changed nothing. A year later I'm more tired, more emotionally distressed, more bedraggled, more anxious, more worried, more stressed, more traumatized, more angry and more hopeless. A year later and Sissy is still a blank, emotionless droid that rages for hours when she doesn't get her way.
A year later and it's thanksgiving again. A year later and I'm still having trouble getting through my pain and sorrow to find things to be thankful for. A year later and Sissy still doesn't know what it means to be thankful.
One year later and RTC, IFI and CBAY or not, Sissy's issues are worse, not better.
Monday, November 22, 2010
textbook RAD
Lots of people are asking, "So...how did Sissy do with transition?"
The answer is: textbook RAD
Which is actually funny. I thought it would make me irritated and then regretful for the break. Nah, it's just making me giggle and snicker. Such a RAD! Really, they could use her as the model.
She's suddenly extremely hard of hearing.
She's also developed a severe case of the whines and the grumps.
She's exhausted (it's hard work being good for strangers and maintaining the lie that she's perfect).
She has to eat and eat and eat and then get angry when I say the kitchen is closed.
She is bored out of her mind and trying to make me get involved in her need for activity and stimulation.
She is insanely intolerant of AB and WG.
She is very weepy and simultaneously superficially giddy.
But I was smart. I kept the day stacked up with activities ON PURPOSE. One of those activities was a trip to MY therapist so she could do a session with just the kids. What a riot. She was RADsing hard.
We arrive in the waiting room and as soon as the therapist opened the door, Sissy decided I needed a tight squeeze around my middle complete with overly excited exclamations of "I love you mom!"
*roll eyes*
Then, ten minutes into the session, my therapist and Sissy emerge into the waiting room, Sissy is bleeding profusely. I rolled my eyes again. She yanked off her bandaid from last night's wound ON PURPOSE and proceeded to pick at her cut until it bled. AND, the icing on the cake, returned newly bandaged with an extra that she made a big show of in front of the therapist, "Mom, this one is for later. At HOME." like as if we don't have a million bandaids at home.
She's been irritating, stupid, annoying and I haven't cared one bit. In fact, I've laughed a lot. And thankfully, my therapist agreed about her shenanigans at our appointment, "textbook RAD moves." She chuckled a little too.
Yes, I'd do respite again if for no other reason than the laugh factor. Still, it makes me sorrowful that Sissy is STILL so RAD, after all of these years, that as time progresses, the rest of us move forward ... without her.
The answer is: textbook RAD
Which is actually funny. I thought it would make me irritated and then regretful for the break. Nah, it's just making me giggle and snicker. Such a RAD! Really, they could use her as the model.
She's suddenly extremely hard of hearing.
She's also developed a severe case of the whines and the grumps.
She's exhausted (it's hard work being good for strangers and maintaining the lie that she's perfect).
She has to eat and eat and eat and then get angry when I say the kitchen is closed.
She is bored out of her mind and trying to make me get involved in her need for activity and stimulation.
She is insanely intolerant of AB and WG.
She is very weepy and simultaneously superficially giddy.
But I was smart. I kept the day stacked up with activities ON PURPOSE. One of those activities was a trip to MY therapist so she could do a session with just the kids. What a riot. She was RADsing hard.
We arrive in the waiting room and as soon as the therapist opened the door, Sissy decided I needed a tight squeeze around my middle complete with overly excited exclamations of "I love you mom!"
*roll eyes*
Then, ten minutes into the session, my therapist and Sissy emerge into the waiting room, Sissy is bleeding profusely. I rolled my eyes again. She yanked off her bandaid from last night's wound ON PURPOSE and proceeded to pick at her cut until it bled. AND, the icing on the cake, returned newly bandaged with an extra that she made a big show of in front of the therapist, "Mom, this one is for later. At HOME." like as if we don't have a million bandaids at home.
She's been irritating, stupid, annoying and I haven't cared one bit. In fact, I've laughed a lot. And thankfully, my therapist agreed about her shenanigans at our appointment, "textbook RAD moves." She chuckled a little too.
Yes, I'd do respite again if for no other reason than the laugh factor. Still, it makes me sorrowful that Sissy is STILL so RAD, after all of these years, that as time progresses, the rest of us move forward ... without her.
Sunday, November 21, 2010
Tired or emotionally exhausted
I taught WG's sunday school class this morning. Only one hour and only 7 children, WG included. Plus there was another mom there to assist.
Now I'm exhausted. I came home and flopped on the bed like a slug. I'd slept very well again last night so I don't think I'm physically tired. I think it's emotional exhaustion.
5 hours left.
*sigh*
Really hoping Sissy doesn't make me pay for this respite but I have the activities stacked up for tomorrow so I'm hoping to avoid the payback by keeping the kids busy, busy, busy.
I'm going to go slug some more. Happy Sunday!
Now I'm exhausted. I came home and flopped on the bed like a slug. I'd slept very well again last night so I don't think I'm physically tired. I think it's emotional exhaustion.
5 hours left.
*sigh*
Really hoping Sissy doesn't make me pay for this respite but I have the activities stacked up for tomorrow so I'm hoping to avoid the payback by keeping the kids busy, busy, busy.
I'm going to go slug some more. Happy Sunday!
Saturday, November 20, 2010
To sleep perchance to dream
Last week Sissy's two agencies had an exercise in futility attempting to jump through all the hoops and cut all the red tape to get Sissy an emergency placement for a weekend respite. Thursday night last week we had a placement. Friday afternoon at 2:30 we had no payment for said respite.
This week they tried again and at 3:15 I was speaking to our respite provider to discuss Sissy's meds and routine. I picked the kids up from school and finger-motioned for WG to come to me so I could whisper to her.
"WHAT?"
"come here."
She walked closer and I said, "guess what? A whole weekend without Sissy screaming."
"Huh? I don't get it?"
"Sissy is spending the weekend with another family."
WG and I were giddy. We took AB to hippotherapy and she ran around and I giggled. "A whole weekend!" we kept shouting at each other in delight.
At 7:00 I was pulling out of the foster families driveway, an enormous grin plastered on my face.
After a fun evening chatting it up on the phone (until 2 am!) I went to bed and slept and slept and slept.
Best night of sleep I've had in a very long time.
Even with the alarm, it's still hard to sleep when you know your child is so volatile and is a threat to your safety. When we sleep, we are the most vulnerable and with Sissy here, I can't ever let my guard down.
If all goes well, we have this family every other weekend through December 26 when Sissy's agency reauthorizes the funds for respite as needed. I have every intention of chatting it up with her providers to let them know how DESPERATE we are if I didn't know I was sleeping so poorly until I finally had the chance to sleep a whole night through. The first time since her discharge from RTC last March.
This week they tried again and at 3:15 I was speaking to our respite provider to discuss Sissy's meds and routine. I picked the kids up from school and finger-motioned for WG to come to me so I could whisper to her.
"WHAT?"
"come here."
She walked closer and I said, "guess what? A whole weekend without Sissy screaming."
"Huh? I don't get it?"
"Sissy is spending the weekend with another family."
WG and I were giddy. We took AB to hippotherapy and she ran around and I giggled. "A whole weekend!" we kept shouting at each other in delight.
At 7:00 I was pulling out of the foster families driveway, an enormous grin plastered on my face.
After a fun evening chatting it up on the phone (until 2 am!) I went to bed and slept and slept and slept.
Best night of sleep I've had in a very long time.
Even with the alarm, it's still hard to sleep when you know your child is so volatile and is a threat to your safety. When we sleep, we are the most vulnerable and with Sissy here, I can't ever let my guard down.
If all goes well, we have this family every other weekend through December 26 when Sissy's agency reauthorizes the funds for respite as needed. I have every intention of chatting it up with her providers to let them know how DESPERATE we are if I didn't know I was sleeping so poorly until I finally had the chance to sleep a whole night through. The first time since her discharge from RTC last March.
Thursday, November 18, 2010
Irony thy name is Adoption Awareness Month
Let me first start by saying that I'm jaded. My experience with adoption as a whole has been very difficult for many reasons which includes but is not limited to raising a class 5 RAD [1]. Plus my bra is ill-fitting today which makes me irritable. And then there's the issue of the board that clocked me squarely on the forehead at a customer's home today so I'm not entirely sure but I think I suffered a minor concussion...
I digress.
From happy-go-lucky cheerful interviews on the local christian radio station to news articles to commercials and billboards, I'm getting an earful of adoption "noise" and it's making me a bit nauseated (although it might be the knot on my forehead.)
Yes. There are amazing adoption stories. Yes. I'm still a blessed woman to have three children when without adoption, I wouldn't be parenting at all. Yes. The general populace needs to be reminded that there are children still needing appropriate home environments. It's the misnomer, "adoption awareness" that makes me cringe. Because what exactly are people being made aware of? And what details are being omitted to prevent potential families from turning away from adoption?
In all of these stories I've heard the past few weeks, there is only hope, joy and happiness. In what universe is that a reality for ANY subgroup in the population? In fiction, perhaps but that's not reality. I know, I know. Writing an interest piece for the local paper that includes the harrowing details of RADs that pee on the floor ON PURPOSE at the age of 10 is not likely to make the phones ring. But as a parent that was never "made aware" of the potential challenges my child and family would face adopting a daughter from the system that had suffered abuse, I want to puke a little. It is an injustice to paint such a rosy picture, for all parties involved.
Today's local paper had a front page article that detailed two family's adoption stories. In the side bar it reported census data about the state's numbers. 13,965 children are in foster homes. 2370 are available to adopt. Most of those children would be african-american males, the least adoptable category of children. The front page article of section B of the same paper, contained an article about an african american father who could face 110 years in prison for the years of abuse he made his sons endure. One child was so battered he suffered severe head trauma and irreversible brain injury. Their mother also faces secondary abuse charges.
The irony is palpable. A feel-good piece about two white families with adult biological children adopting Haitian and Chinese children that had already suffered neglect, abuse and orphange stays followed by a piece about three more LOCAL boys in the system because of abuse. I read both articles several times. Not one of them mentioned the challenges the children or families faced attempting to raise or support these children. RADs? What's that? It wasn't in the articles. Both pieces were written from a "save these poor children" point of view.
Yes. Save these children.
But let's really make people "aware" first, shall we?
To pretend that the realities of trauma don't exist or that early childhood trauma causes a lifetime of struggle and hardship for even the most cognitively capable child is to neglect to inform someone that the water is too shallow to dive into. I wish for all the world that we had been better informed of the challenges we would be up against for Sissy. I think of the time we lost in getting her appropriate care and I cringe. Could she have been more attached today and less volatile if we'd been better prepared and made aware of her challenges before we got custody? I'll never know for certain but the fact that we were denied that opportunity really burns me. And when the newspapers and talk shows only tell the fictitious, pie-in-the-sky tales, it continues to be a slap in the face to the intent of making people aware. Point of fact, they aren't doing any such thing.
Here's how I would make people aware about adoption:
#1 - rally and support birth mothers. I know some adoptive families have challenged birthmoms or difficult relationships with first families. I know for some people, she is a "womb" and nothing more. But somewhere in space and time, a woman gave birth to our children and like it or not, she walks the earth knowing her arms are empty regardless of how that reality came to be for her.
#2 - give adoptees a voice. To ignore their grief and story is akin to the advocacy group Autism Speaks which has no autistic persons on the board. Exactly who is "speaking" for autism? Apparently not the autistic people! So who is making people aware of adoption? Currently it is NOT adoptees.
#3 - Educate adoptive parents of EVERYTHING before they even look at photos of waiting children. No sugar coating, no fictional feel-good stories, just raw, cold, harsh, clinical truths. Adoption is not an altruistic, charitable contribution to a food bank at Thanksgiving. It is assuming the responsibility of raising another human to adulthood, attempting to educate them and arm them with the tools they need to be functional in society, socially, emotionally, physically, financially, environmentally, spiritually, and mentally. Reciprocated love is a bonus.
The reality is that next year's front page adoption story SHOULD be that the three abused boys mentioned in Section B have found homes, have been diagnosed with RAD, are getting attachment therapy, are challenging for their families on a good day and that their new parents need ongoing support from the community too.
Eh, but I'm an idealist because my reality is too harsh, my head is killing me and I really need to take off this bra.
[1] A class 5 RAD?!? That's not a legitimate diagnosis. Here's the deal, the only thing Sissy doesn't score for on the RADQ is arson. So I'm making it up. She's class 5. And that's my story and I'm sticking to it. LOL
I digress.
From happy-go-lucky cheerful interviews on the local christian radio station to news articles to commercials and billboards, I'm getting an earful of adoption "noise" and it's making me a bit nauseated (although it might be the knot on my forehead.)
Yes. There are amazing adoption stories. Yes. I'm still a blessed woman to have three children when without adoption, I wouldn't be parenting at all. Yes. The general populace needs to be reminded that there are children still needing appropriate home environments. It's the misnomer, "adoption awareness" that makes me cringe. Because what exactly are people being made aware of? And what details are being omitted to prevent potential families from turning away from adoption?
In all of these stories I've heard the past few weeks, there is only hope, joy and happiness. In what universe is that a reality for ANY subgroup in the population? In fiction, perhaps but that's not reality. I know, I know. Writing an interest piece for the local paper that includes the harrowing details of RADs that pee on the floor ON PURPOSE at the age of 10 is not likely to make the phones ring. But as a parent that was never "made aware" of the potential challenges my child and family would face adopting a daughter from the system that had suffered abuse, I want to puke a little. It is an injustice to paint such a rosy picture, for all parties involved.
Today's local paper had a front page article that detailed two family's adoption stories. In the side bar it reported census data about the state's numbers. 13,965 children are in foster homes. 2370 are available to adopt. Most of those children would be african-american males, the least adoptable category of children. The front page article of section B of the same paper, contained an article about an african american father who could face 110 years in prison for the years of abuse he made his sons endure. One child was so battered he suffered severe head trauma and irreversible brain injury. Their mother also faces secondary abuse charges.
The irony is palpable. A feel-good piece about two white families with adult biological children adopting Haitian and Chinese children that had already suffered neglect, abuse and orphange stays followed by a piece about three more LOCAL boys in the system because of abuse. I read both articles several times. Not one of them mentioned the challenges the children or families faced attempting to raise or support these children. RADs? What's that? It wasn't in the articles. Both pieces were written from a "save these poor children" point of view.
Yes. Save these children.
But let's really make people "aware" first, shall we?
To pretend that the realities of trauma don't exist or that early childhood trauma causes a lifetime of struggle and hardship for even the most cognitively capable child is to neglect to inform someone that the water is too shallow to dive into. I wish for all the world that we had been better informed of the challenges we would be up against for Sissy. I think of the time we lost in getting her appropriate care and I cringe. Could she have been more attached today and less volatile if we'd been better prepared and made aware of her challenges before we got custody? I'll never know for certain but the fact that we were denied that opportunity really burns me. And when the newspapers and talk shows only tell the fictitious, pie-in-the-sky tales, it continues to be a slap in the face to the intent of making people aware. Point of fact, they aren't doing any such thing.
Here's how I would make people aware about adoption:
#1 - rally and support birth mothers. I know some adoptive families have challenged birthmoms or difficult relationships with first families. I know for some people, she is a "womb" and nothing more. But somewhere in space and time, a woman gave birth to our children and like it or not, she walks the earth knowing her arms are empty regardless of how that reality came to be for her.
#2 - give adoptees a voice. To ignore their grief and story is akin to the advocacy group Autism Speaks which has no autistic persons on the board. Exactly who is "speaking" for autism? Apparently not the autistic people! So who is making people aware of adoption? Currently it is NOT adoptees.
#3 - Educate adoptive parents of EVERYTHING before they even look at photos of waiting children. No sugar coating, no fictional feel-good stories, just raw, cold, harsh, clinical truths. Adoption is not an altruistic, charitable contribution to a food bank at Thanksgiving. It is assuming the responsibility of raising another human to adulthood, attempting to educate them and arm them with the tools they need to be functional in society, socially, emotionally, physically, financially, environmentally, spiritually, and mentally. Reciprocated love is a bonus.
The reality is that next year's front page adoption story SHOULD be that the three abused boys mentioned in Section B have found homes, have been diagnosed with RAD, are getting attachment therapy, are challenging for their families on a good day and that their new parents need ongoing support from the community too.
Eh, but I'm an idealist because my reality is too harsh, my head is killing me and I really need to take off this bra.
[1] A class 5 RAD?!? That's not a legitimate diagnosis. Here's the deal, the only thing Sissy doesn't score for on the RADQ is arson. So I'm making it up. She's class 5. And that's my story and I'm sticking to it. LOL
Tuesday, November 16, 2010
RAD friendly christmas book!
WG yanked this one off the public library shelf arbitrarily. It was about Christmas which was good enough for her.
The premise of the story is that Santa needs a substitute and he selects a haphazard calamity joe that makes many mistakes trying to be Santa and questions the principles of giving gifts only to the good kids.
YOU MUST GET IT or READ IT if your RAD had trouble with the "naughty and nice" list.
"How Murray Saved Christmas" by Mike Reiss
ISBN: 0-8431-7610-5
Amazon link
The premise of the story is that Santa needs a substitute and he selects a haphazard calamity joe that makes many mistakes trying to be Santa and questions the principles of giving gifts only to the good kids.
YOU MUST GET IT or READ IT if your RAD had trouble with the "naughty and nice" list.
"How Murray Saved Christmas" by Mike Reiss
ISBN: 0-8431-7610-5
Amazon link
What Love Really Means
Rare morning. No one screaming, no one crying, only a few verbal digs between siblings. We drove to school listening to the christian radio station, the girls singing along, AB being giddy after being Mr. Grumpalupagus at breakfast. As I drove home, the thoughts, emotions and angst of the last very challenging week with Sissy still weighing on my mind, JJ Heller came on singing this:
Which is exactly what I have been thinking. What does love really mean? It's been so very hard with Sissy. I want to hang onto my pain and anger for how she's treated us by choice but I just can't do it. When I look at her, I still feel that indelible pull of maternal love and it tears me apart. Last night she told me she had a dream that a "bad man" stabbed me in the back. I asked her more about the dream, her point of view, what the man looked like and where he came from. "He came from upstairs and I was standing behind him, I didn't even see him. I only saw the knife going into your back."
"Sissy," I asked very carefully, "Were you the one holding the knife?"
She got uncomfortable. "No. no..." she stammered. "I was just ... yeah. I was just watching him do it. He was there. I just couldn't see him. It really scared me. I didn't know why he was stabbing you!"
"That IS a scary dream. I'm sorry you had that dream. Did you dream this recently?"
"I don't know. It was awhile ago." But I knew better. She didn't make eye contact when she said it. She probably had this dream very recently.
"Mom, can I hug you?"
"Yes." And she came to me and hugged me very tight, slightly trembling and kissed me on the head. Something she hasn't done for a very long time.
How my heart breaks! A child that desperately needs my love that dreams she is trying to kill me. Such pain. For both of us. And I just wanted to love a child, and this child just really needs my love. But is love enough?
During service on Sunday, before I felt like, yet again, I was being called to answer for my impaired children, there was a baby dedication. A beautiful baby girl dressed all in white, her parents proud and teary-eyed as they handed her to the Pastor to baptize. In the Methodist church, the Sacrament of Baptism is a typical liturgical experience. As the Pastor continued with the recitation and the congregation and parents responded aloud accordingly, I was struck by the profound knowledge that this ordinary Baptism is ordinary for only a few children that are born to this world.
I began to cry. What if EVERY child that was born was dedicated, regardless of the circumstance they are born to? What if EVERY little person that has breath (or doesn't) is given the same rousing response from a congregation of like-minded believers? The congregation recited:
With God's help, we will so order our lives after the example of Christ, that surrounded by steadfast love, may be established in the faith, and confirmed and strengthened in the way that leads to life eternal.
After baptizing her in the name of the Father, Son and Holy Spirit, the Pastor took the baby and walked with her through the congregation. "Look at this face," he roused us. "It is the face of God. God is in her. Indeed, He is in ALL of us. When you look at this little child, remember Christ, remember that YOU hold the keys to the kingdom just as she does."
Oh what a treatise! What for all the world would humanity be like if we all embraced this wisdom, if every child received such a blessing?
My tears began to sting my cheeks because that's not the case. Children are destroyed before they breathe because their existence causes fear in the hearts of their parents. Children are born in poverty and pain. Children are born to mothers addicted to drugs and alcohol. Children are born only to be beaten, traumatized or ravished by angry men and women. Children, who know nothing other than their own dependence upon another human being are denied their inalienable rights to food, clothing and shelter. Children, little beautiful babies who should all be clothed head to foot in white and presented to the world as gifts full of potential but instead are born to know only pain.
So we adopt them hoping to deliver them from pain only to discover that the damage is done and in some cases is irrevocable. We want to love them for who they are, as this song begs. But our love alone is not enough. These children, who were denied the privelege of being born to proud parents that seek to raise their family with morals, integrity and compassion, unwittingly abuse the families that take them from their pain and attempt to restore what is right.
Our children may never recover. They may go on to create more havoc and more children born in poverty and pain. They may destroy our lives as we desperately cling to the hope that their potential is not void. They may want to destroy us because we try to love them for who they are but we will not falter. We will not fail. We will do as the pastor beseeches us and look upon their faces as though we gaze upon the face of God.
I sat between two strangers, tears streaming down my face and I wondered, Do they even know what I know about these children as we sit here, gazing upon this beautiful face and agree to raise her as a congregation? And what about MY children? Will they still be so loved and regarded even though they are so challenged? Will I still be regarded as a proud mother that seeks to raise her children with morals, integrity and compassion? Or will I be treated with disdain when they behave poorly because it is perceived as a reflection of my parenting?
I got my answer 30 minutes later.
I'm no different than my own child! I also beg to be loved for whom I've become, regardless of MY pain, poverty, suffering and trauma. Don't we all?
Bart and Claudia, bless my soul, have suffered so much anguish attempting to raise their challenged children. And now, as they step into the next generation, they have the esteemed privilege of seeing that hope is returned anew. On Sunday, as I sat in my own methodist congregation, Bart had the remarkable privilege to baptize his new grandchild and affirm two sons. And at the same time, Kari's husband decided NOT be become an elder because he knew his challenged children would not help him set the proper example for his congregation of an elder's family.
What irony that everyday we embrace and walk in the truth of WHAT LOVE REALLY MEANS only to be reminded that the truth in it's nakedness, filth and pain isn't wanted.
Which is exactly what I have been thinking. What does love really mean? It's been so very hard with Sissy. I want to hang onto my pain and anger for how she's treated us by choice but I just can't do it. When I look at her, I still feel that indelible pull of maternal love and it tears me apart. Last night she told me she had a dream that a "bad man" stabbed me in the back. I asked her more about the dream, her point of view, what the man looked like and where he came from. "He came from upstairs and I was standing behind him, I didn't even see him. I only saw the knife going into your back."
"Sissy," I asked very carefully, "Were you the one holding the knife?"
She got uncomfortable. "No. no..." she stammered. "I was just ... yeah. I was just watching him do it. He was there. I just couldn't see him. It really scared me. I didn't know why he was stabbing you!"
"That IS a scary dream. I'm sorry you had that dream. Did you dream this recently?"
"I don't know. It was awhile ago." But I knew better. She didn't make eye contact when she said it. She probably had this dream very recently.
"Mom, can I hug you?"
"Yes." And she came to me and hugged me very tight, slightly trembling and kissed me on the head. Something she hasn't done for a very long time.
How my heart breaks! A child that desperately needs my love that dreams she is trying to kill me. Such pain. For both of us. And I just wanted to love a child, and this child just really needs my love. But is love enough?
During service on Sunday, before I felt like, yet again, I was being called to answer for my impaired children, there was a baby dedication. A beautiful baby girl dressed all in white, her parents proud and teary-eyed as they handed her to the Pastor to baptize. In the Methodist church, the Sacrament of Baptism is a typical liturgical experience. As the Pastor continued with the recitation and the congregation and parents responded aloud accordingly, I was struck by the profound knowledge that this ordinary Baptism is ordinary for only a few children that are born to this world.
I began to cry. What if EVERY child that was born was dedicated, regardless of the circumstance they are born to? What if EVERY little person that has breath (or doesn't) is given the same rousing response from a congregation of like-minded believers? The congregation recited:
With God's help, we will so order our lives after the example of Christ, that surrounded by steadfast love, may be established in the faith, and confirmed and strengthened in the way that leads to life eternal.
After baptizing her in the name of the Father, Son and Holy Spirit, the Pastor took the baby and walked with her through the congregation. "Look at this face," he roused us. "It is the face of God. God is in her. Indeed, He is in ALL of us. When you look at this little child, remember Christ, remember that YOU hold the keys to the kingdom just as she does."
Oh what a treatise! What for all the world would humanity be like if we all embraced this wisdom, if every child received such a blessing?
My tears began to sting my cheeks because that's not the case. Children are destroyed before they breathe because their existence causes fear in the hearts of their parents. Children are born in poverty and pain. Children are born to mothers addicted to drugs and alcohol. Children are born only to be beaten, traumatized or ravished by angry men and women. Children, who know nothing other than their own dependence upon another human being are denied their inalienable rights to food, clothing and shelter. Children, little beautiful babies who should all be clothed head to foot in white and presented to the world as gifts full of potential but instead are born to know only pain.
So we adopt them hoping to deliver them from pain only to discover that the damage is done and in some cases is irrevocable. We want to love them for who they are, as this song begs. But our love alone is not enough. These children, who were denied the privelege of being born to proud parents that seek to raise their family with morals, integrity and compassion, unwittingly abuse the families that take them from their pain and attempt to restore what is right.
Our children may never recover. They may go on to create more havoc and more children born in poverty and pain. They may destroy our lives as we desperately cling to the hope that their potential is not void. They may want to destroy us because we try to love them for who they are but we will not falter. We will not fail. We will do as the pastor beseeches us and look upon their faces as though we gaze upon the face of God.
I sat between two strangers, tears streaming down my face and I wondered, Do they even know what I know about these children as we sit here, gazing upon this beautiful face and agree to raise her as a congregation? And what about MY children? Will they still be so loved and regarded even though they are so challenged? Will I still be regarded as a proud mother that seeks to raise her children with morals, integrity and compassion? Or will I be treated with disdain when they behave poorly because it is perceived as a reflection of my parenting?
I got my answer 30 minutes later.
I'm no different than my own child! I also beg to be loved for whom I've become, regardless of MY pain, poverty, suffering and trauma. Don't we all?
Bart and Claudia, bless my soul, have suffered so much anguish attempting to raise their challenged children. And now, as they step into the next generation, they have the esteemed privilege of seeing that hope is returned anew. On Sunday, as I sat in my own methodist congregation, Bart had the remarkable privilege to baptize his new grandchild and affirm two sons. And at the same time, Kari's husband decided NOT be become an elder because he knew his challenged children would not help him set the proper example for his congregation of an elder's family.
What irony that everyday we embrace and walk in the truth of WHAT LOVE REALLY MEANS only to be reminded that the truth in it's nakedness, filth and pain isn't wanted.
Sunday, November 14, 2010
church folks don't want an education
i typed up an entire post and deleted it.
on purpose.
because what's the point? I can blog all I like about what happens in my life but it doesn't change anything, does it? People are still going to be ignoramuses. There are always going to be idiots that i'll have to explain my challenged children too that will still tell me that I'm wrong. Even when staring at the evidence.
And really? I want to deal with adult strangers that won't hear what I have to say when I have to deal with a child that is equally incorigible?
And I have to do this at church? the one day, nay the one HOUR a week I'm trying to feel BETTER about my circumstances?
no.
I'm not a parent of challenged children so I can educate the world. I'm just trying to get through today without a crisis. As I do EVERY.SINGLE.DAY.WITHOUT.FAIL.
I most certainly do NOT want to explain to some guy I've never met before (we go to a huge church) that my children are impaired so he can tell me otherwise. Really? REALLY!?!
For crying out loud, I can't even go to church for one hour without having to always deal with the fact that people do not understand challenged children and the difficulties their parents endure trying to raise them. And the last thing I want to do is justify myself or my children to a stranger.
Here's what I WILL say (because my hubby says I say lots of amazing things and he needed me to write this one down): if you're going to be a sunday school teacher then you have to accept that you know NOTHING about what goes on in a child's life or in the lives of their parents. You have to take an objective stance when dealing with conflict, not a combative or confrontational one. You have to assume that every child will need something a little different in order to receive the bible message you are attempting to teach and you have to take a proactive approach when you hit road blocks with that child or their parent instead of a reactive one.
but there I go again, educating.
And expecting that people DESIRE to be educated.
point in fact, they do not.
From here forward, I absolutely, positively will NOT attend church without my spouse. I am attacked when I do. People don't pester us about our kids when he's there. He's 6 foot 7 inches. You don't argue with a man that tall. And you certainly don't mess with his kids or his wife.
It also begs the questions: do we just not go at all? do we find another church? Do we change when we attend? Do we bother to contact pastoral staff to help us find a solution?
i say, screw it. It's too much effort and no one cares anyway. unless their lives are intimately involved with impaired kids, they don't want the education about it. and that goes for church folks.
thanks to Marty for saying all of this in a much kinder way.
on purpose.
because what's the point? I can blog all I like about what happens in my life but it doesn't change anything, does it? People are still going to be ignoramuses. There are always going to be idiots that i'll have to explain my challenged children too that will still tell me that I'm wrong. Even when staring at the evidence.
And really? I want to deal with adult strangers that won't hear what I have to say when I have to deal with a child that is equally incorigible?
And I have to do this at church? the one day, nay the one HOUR a week I'm trying to feel BETTER about my circumstances?
no.
I'm not a parent of challenged children so I can educate the world. I'm just trying to get through today without a crisis. As I do EVERY.SINGLE.DAY.WITHOUT.FAIL.
I most certainly do NOT want to explain to some guy I've never met before (we go to a huge church) that my children are impaired so he can tell me otherwise. Really? REALLY!?!
For crying out loud, I can't even go to church for one hour without having to always deal with the fact that people do not understand challenged children and the difficulties their parents endure trying to raise them. And the last thing I want to do is justify myself or my children to a stranger.
Here's what I WILL say (because my hubby says I say lots of amazing things and he needed me to write this one down): if you're going to be a sunday school teacher then you have to accept that you know NOTHING about what goes on in a child's life or in the lives of their parents. You have to take an objective stance when dealing with conflict, not a combative or confrontational one. You have to assume that every child will need something a little different in order to receive the bible message you are attempting to teach and you have to take a proactive approach when you hit road blocks with that child or their parent instead of a reactive one.
but there I go again, educating.
And expecting that people DESIRE to be educated.
point in fact, they do not.
From here forward, I absolutely, positively will NOT attend church without my spouse. I am attacked when I do. People don't pester us about our kids when he's there. He's 6 foot 7 inches. You don't argue with a man that tall. And you certainly don't mess with his kids or his wife.
It also begs the questions: do we just not go at all? do we find another church? Do we change when we attend? Do we bother to contact pastoral staff to help us find a solution?
i say, screw it. It's too much effort and no one cares anyway. unless their lives are intimately involved with impaired kids, they don't want the education about it. and that goes for church folks.
thanks to Marty for saying all of this in a much kinder way.
Saturday, November 13, 2010
Hello!!!
Sorry for the hiatus! I'm officially back to a general audience. I felt the need to read through my posts to weed out anything incriminating. So tedious. There's just too much going on with Sissy for me to avoid caution. Please note the new url for this blog if you bookmark. I've also been lurking on my follower's blogs clicking my blog link and discovering that it is a deadend. I think if you'll need to re-add me in your "blogs I follow" gadget with the new url: http://peaceinpuzzles.blogspot.com/ Or you can re-follow me. I changed the url because we realized that I told Sissy's therapists about the blog and gave them the link and we are terribly alarmed about tudusamom's nonsense.
Sissy self-inflicted wounds for the first time in her rage on Sunday. I took pictures as proof and texted her therapist immediately.
No therapies seem to be working, the therapist has documented that Sissy will manipulate sessions, parrot phrases she thinks others want her to hear but will not use her therapy tools in real life situations. In addition, she takes out her frustrations, anger, anxieties and mania on her family.
Wednesday night she was sent to shower. half way to the bathroom she announced she was having trouble with constipation again. I explained she needed to let me see her 'bloody poo" and she got angry. She always "forgets" to show me her stools so I can see for myself what is REALLY going on and give an accurate report to her physician.
I explained that since I couldn't see her BM, I had to assume the worst and she'd be going back on Mi.ralax and Apple Juice immediately. She got angry, ran to the bathroom, locked herself in and got in the shower to rage. I couldn't get in and knowing she'd self-inflicted on Sunday, I was very alarmed for her safety.
I called the crisis number for her therapist and ... ugh. that is crap. That's as useful as sitting on my ass for 10 hours in ER to get sent home with a child that reports she is afraid she will hurt someone.
Now the therapists are saying that her scores on the PRTF aren't sufficient for RTC placement, that it all goes before the review board, that we have to have a meeting "sometime in the next few weeks" to discuss alternatives to RTC, blah, blah, blah.
The recent escalating behaviors are insufficient. She has to demonstrate LONG TERM (30+days) threatening behaviors.
In addition, the pdoc says the state budget for mental health is about to crash. If kids are not actively demonstrating homicidal and suicidal tendencies, they are getting kicked out of RTCs. One of the local entities to provide support for youth and adolescents has closed due to budget constraints, dumping hundreds of families on their butts without alternatives.
Took Sissy off the Klonopin we started last Friday - pdoc thought it would help with the mood swings, rages and sleep issues. Nope. We think she's had a paradoxical affect. Monitoring her for the weekend. She was rapid cycling yesterday: manic to crashing in 3 hours cold. Today she's pretty even keel. She's 36 hours since her last dose. Tonight I'm going to give her an aromatherapy bath using peace&calming essential oils in the hopes that it will soothe her and avoid a bedtime rage.
Have contacted 18 programs with your help. Keep sending any links you find. I haven't had a duplicate yet! I called McLean hospital in Boston. They have a children's psychiatric hospital that is affiliated with harvard. They aren't doing any bipolar research BUT, he referred me to Massachusetts General. Mass Gen is doing a bipolar research program for youths that have two bipolar parents. Score. That is Sissy. It would be great if I heard from them.
I've also heard from a longterm factility in VT that has a youth program in HOUSING, not hospital or dormitory. Score. That would be MUCH better for transition back to home. Essentially, it is run like a group home/therapeutic foster home but it is actually an RTC with on site staff 24/7. (thanks Fosterabba - that's the battleboro link you sent me)
as for distance, travel, etc. I really don't care. As my IRL friend told me last night when she dropped by, the system here is failing our daughter. Another RTC guy I spoke to told me straight up, state programs are NOT going to help Sissy. Private pay or grant funded programs are the only ones that make any lasting change. He also said Sissy needs long term (duh) but based on the story I told him, she is too severe for their program. Story of my life.
At this point I'm thinking, forget addressing the RAD. Where does the RAD end and the bipolar/psychoses begin? Which illness treatment will have the most success in helping her? I don't think it's going to be straight RAD therapy. I think if we pursue a course for bipolar treatment we may uncover that she's more attached than we give her credit for. I've been investing my research solely on bipolar and have discovered that the early onset kids mimic RAD, instead of the other way around. Or perhaps the severe bipolar in children makes it impossible to attach? Not sure.
Bottom line, we're at a cross roads again in Sissy's care and our family's survival. My immediate plan is to get her to a placement that will adequately address her enormous needs because it's not me. Plan B is to keep the rest of us safe and flying under the radar of the watchful eyes of agencies that could tear our lives apart and in lieu of tudu's recent fiasco, to keep this blog safe.
In the meantime, patron saint of mental illness, Dymphna, is hanging around my neck where I think it will stay for a long time. My IRL friend brought for me when she stopped by. I'm not catholic and don't know a whole lot behind the liturgy and ritualism of these medals and patron saints, however, I know that it is great emotional comfort.
I leave you with words from Erma Bombeck:
Mothers of Disabled Children, by Erma Bombeck. Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As he observes, He instructs His angels to make notes in a giant ledger. Armstrong, Beth: son; patron saint, Matthew. Forest, Marjorie: daughter; patron saint, Cecilia. Rudledge, Carrie: twins; patron saint.. . give her Gerard. He's used to profanity. Finally, He passes a name to an angel and smiles. Give her a blind child. The angel is curious. Why this one, God? She's so happy. Exactly, says God. Could I give a child with a handicap to a mother who does not know laughter? That would be cruel. But has she patience? asks the angel. I don't want to her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. But, Lord, I don't think she even believes in you. God smiles. No matter. I can fix that. This one is perfect. She has just enough selfishness. The angel gasps. Selfishness? Is that a virtue? God nods. If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word; She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see-ignorance, cruelty, prejudice-and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side. And what about her patron saint? asks the angel, pen poised in midair. God smiles. A mirror will suffice.
Sissy self-inflicted wounds for the first time in her rage on Sunday. I took pictures as proof and texted her therapist immediately.
No therapies seem to be working, the therapist has documented that Sissy will manipulate sessions, parrot phrases she thinks others want her to hear but will not use her therapy tools in real life situations. In addition, she takes out her frustrations, anger, anxieties and mania on her family.
Wednesday night she was sent to shower. half way to the bathroom she announced she was having trouble with constipation again. I explained she needed to let me see her 'bloody poo" and she got angry. She always "forgets" to show me her stools so I can see for myself what is REALLY going on and give an accurate report to her physician.
I explained that since I couldn't see her BM, I had to assume the worst and she'd be going back on Mi.ralax and Apple Juice immediately. She got angry, ran to the bathroom, locked herself in and got in the shower to rage. I couldn't get in and knowing she'd self-inflicted on Sunday, I was very alarmed for her safety.
I called the crisis number for her therapist and ... ugh. that is crap. That's as useful as sitting on my ass for 10 hours in ER to get sent home with a child that reports she is afraid she will hurt someone.
Now the therapists are saying that her scores on the PRTF aren't sufficient for RTC placement, that it all goes before the review board, that we have to have a meeting "sometime in the next few weeks" to discuss alternatives to RTC, blah, blah, blah.
The recent escalating behaviors are insufficient. She has to demonstrate LONG TERM (30+days) threatening behaviors.
In addition, the pdoc says the state budget for mental health is about to crash. If kids are not actively demonstrating homicidal and suicidal tendencies, they are getting kicked out of RTCs. One of the local entities to provide support for youth and adolescents has closed due to budget constraints, dumping hundreds of families on their butts without alternatives.
Took Sissy off the Klonopin we started last Friday - pdoc thought it would help with the mood swings, rages and sleep issues. Nope. We think she's had a paradoxical affect. Monitoring her for the weekend. She was rapid cycling yesterday: manic to crashing in 3 hours cold. Today she's pretty even keel. She's 36 hours since her last dose. Tonight I'm going to give her an aromatherapy bath using peace&calming essential oils in the hopes that it will soothe her and avoid a bedtime rage.
Have contacted 18 programs with your help. Keep sending any links you find. I haven't had a duplicate yet! I called McLean hospital in Boston. They have a children's psychiatric hospital that is affiliated with harvard. They aren't doing any bipolar research BUT, he referred me to Massachusetts General. Mass Gen is doing a bipolar research program for youths that have two bipolar parents. Score. That is Sissy. It would be great if I heard from them.
I've also heard from a longterm factility in VT that has a youth program in HOUSING, not hospital or dormitory. Score. That would be MUCH better for transition back to home. Essentially, it is run like a group home/therapeutic foster home but it is actually an RTC with on site staff 24/7. (thanks Fosterabba - that's the battleboro link you sent me)
as for distance, travel, etc. I really don't care. As my IRL friend told me last night when she dropped by, the system here is failing our daughter. Another RTC guy I spoke to told me straight up, state programs are NOT going to help Sissy. Private pay or grant funded programs are the only ones that make any lasting change. He also said Sissy needs long term (duh) but based on the story I told him, she is too severe for their program. Story of my life.
At this point I'm thinking, forget addressing the RAD. Where does the RAD end and the bipolar/psychoses begin? Which illness treatment will have the most success in helping her? I don't think it's going to be straight RAD therapy. I think if we pursue a course for bipolar treatment we may uncover that she's more attached than we give her credit for. I've been investing my research solely on bipolar and have discovered that the early onset kids mimic RAD, instead of the other way around. Or perhaps the severe bipolar in children makes it impossible to attach? Not sure.
Bottom line, we're at a cross roads again in Sissy's care and our family's survival. My immediate plan is to get her to a placement that will adequately address her enormous needs because it's not me. Plan B is to keep the rest of us safe and flying under the radar of the watchful eyes of agencies that could tear our lives apart and in lieu of tudu's recent fiasco, to keep this blog safe.
In the meantime, patron saint of mental illness, Dymphna, is hanging around my neck where I think it will stay for a long time. My IRL friend brought for me when she stopped by. I'm not catholic and don't know a whole lot behind the liturgy and ritualism of these medals and patron saints, however, I know that it is great emotional comfort.
I leave you with words from Erma Bombeck:
Mothers of Disabled Children, by Erma Bombeck. Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As he observes, He instructs His angels to make notes in a giant ledger. Armstrong, Beth: son; patron saint, Matthew. Forest, Marjorie: daughter; patron saint, Cecilia. Rudledge, Carrie: twins; patron saint.. . give her Gerard. He's used to profanity. Finally, He passes a name to an angel and smiles. Give her a blind child. The angel is curious. Why this one, God? She's so happy. Exactly, says God. Could I give a child with a handicap to a mother who does not know laughter? That would be cruel. But has she patience? asks the angel. I don't want to her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. But, Lord, I don't think she even believes in you. God smiles. No matter. I can fix that. This one is perfect. She has just enough selfishness. The angel gasps. Selfishness? Is that a virtue? God nods. If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word; She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see-ignorance, cruelty, prejudice-and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side. And what about her patron saint? asks the angel, pen poised in midair. God smiles. A mirror will suffice.
Wednesday, November 10, 2010
unbloggable & movie quotes
It was ...
It was...
SOAP POISONING!!!!
*enter harrowing wails of sorrow*
Actually, I don't know what the heck it was this evening but it's definitely NOT bloggable. It's bad. It wasn't soap poisoning. That would have been easy.
Sissy is getting harder to manage by the minute and it's scaring the crap out of me, terrorizing her younger siblings and tearing our family apart.
Always look on the bright side of life
Progress reports came out today. AB improved in ALL areas!! I'm SO proud of him. He's still not passing math BUT he improved his percentage 6 points in the last four weeks! He just might pass by the end of the second quarter!
WG... wow. Our county is using new state standards for grading first graders. Students are given 1, 2, 3 or 4 on 11 different tested areas of achievement. At the meeting at the beginning of the school year to educate the parents on the new standards, they told us "Students will likely score 2s and 3s. We very rarely assign 4s. Students that get 4s are far exceeding the standards CONSISTENTLY. Don't be upset if you child doesn't get a 4. In fact, consider it unlikely. Our objective is to get every first grader in the 3s for all 11 areas of achievement by May"
So I opened WG's progress report and began crying. Out of the 11 areas, 7 scored a 4. The other 4 areas were scored a 3. Wow. WOW WOW WOW. Holy crap, wow. I'm going to look into seeing if she'll qualify for a scholarship to attend the local prep school next year.
Oh, and WG lost her first tooth at super on Monday night. She began to cry saying, "I'm just so happy I'm crying!" LOL Don't tell WG in case it gives her a big head, but just thinking about how normal she is makes me so happy i cry!
OK, because I'm raw after tonight's fiasco, I'm feeling generous. The first reader that can tell me the names of the two movies I've quoted here will get a set of 4 hand quilted coasters.
sorry, this contest is open to registered users only for privacy reasons
It was...
SOAP POISONING!!!!
*enter harrowing wails of sorrow*
Actually, I don't know what the heck it was this evening but it's definitely NOT bloggable. It's bad. It wasn't soap poisoning. That would have been easy.
Sissy is getting harder to manage by the minute and it's scaring the crap out of me, terrorizing her younger siblings and tearing our family apart.
Always look on the bright side of life
Progress reports came out today. AB improved in ALL areas!! I'm SO proud of him. He's still not passing math BUT he improved his percentage 6 points in the last four weeks! He just might pass by the end of the second quarter!
WG... wow. Our county is using new state standards for grading first graders. Students are given 1, 2, 3 or 4 on 11 different tested areas of achievement. At the meeting at the beginning of the school year to educate the parents on the new standards, they told us "Students will likely score 2s and 3s. We very rarely assign 4s. Students that get 4s are far exceeding the standards CONSISTENTLY. Don't be upset if you child doesn't get a 4. In fact, consider it unlikely. Our objective is to get every first grader in the 3s for all 11 areas of achievement by May"
So I opened WG's progress report and began crying. Out of the 11 areas, 7 scored a 4. The other 4 areas were scored a 3. Wow. WOW WOW WOW. Holy crap, wow. I'm going to look into seeing if she'll qualify for a scholarship to attend the local prep school next year.
Oh, and WG lost her first tooth at super on Monday night. She began to cry saying, "I'm just so happy I'm crying!" LOL Don't tell WG in case it gives her a big head, but just thinking about how normal she is makes me so happy i cry!
OK, because I'm raw after tonight's fiasco, I'm feeling generous. The first reader that can tell me the names of the two movies I've quoted here will get a set of 4 hand quilted coasters.
sorry, this contest is open to registered users only for privacy reasons
Sunday, November 7, 2010
wacky words
Some days with Sissy are ... interesting.
That is to say, many times she opens her mouth and something comes out of it and we have one of two reactions:
1. Huh?
2. LMAO
She doesn't usually catch on to response #1 but response #2 makes her angry. Unfortunately, response #2 is the one that happens the most because yowee, zowee, she says some crazy crap. Next to the definition of "narcissist" in the dictionary is Sissy's picture. And speaking of dictionaries and Sissy...
CRAZY TALK #1:
Last week Sissy was arguing with The Dad about the difference between a want and a need. The Dad deferred to the dictionary. He was trying to make the point that Sissy perceives her wants as needs and that she can't have everything she wants even if she thinks she NEEDS it.
The definition of the word "want" was read aloud which was followed by Sissy's anger.
"WHAT!" she fumed. "That's not the right definition!"
The Dad patiently said, "it's in the dictionary. What other definition should there be for the word 'want'?"
And Sissy thinking herself so clever, blustered and blurted, "WELL! That's not MY definition of that word!"
Ever so gently The Dad said, "So... you're smarter than the dictionary now?"
This scenario garnered Response #1 and #2 because "huh? my 10 year old thinks she has better definitions than a dictionary?" was followed by "OMG! That's HYSTERICAL! She REALLY believes the dictionary is wrong and SHE is right!"
Really. she believes the dictionary is wrong.
I mean, what do you even SAY to that?!?
CRAZY TALK #2
Sissy was looking at her cat calendar, flipping through the pictures. "Mom? Are these pictures of REAL cats?
Response #1 followed by my best deadpan facial expression and monotone voice, "no. they're robot cats made to look like the real ones."
"Really?!" she replied, then to herself, "wow, they look so real."
Response #2
CRAZY TALK #3
Sissy had to create a poster for Girl Scouts that was to depict things that inspired her, were interesting to her, made her want to be a better person and things she was hoping to achieve or do when she grew up.
Sissy was excited about the assignment and began cutting out and coloring pictures of the Chippettes. Then she cut up her favorite outfits out of the American Girl doll magazine. Then she cut up her Harry Potter poster mag to plaster the remaining space on the poster (which was 2/3 of it) with a blow up of Harry himself.
All along I kept reminding Sissy of the assignment tasks and directives. But when she was prepared to glue the giant Harry head onto her poster I couldn't take it anymore. "Stop. Why is Harry Potter on that poster?"
"huh?"
"Do you want to be Harry Potter when you grow up?"
"no. I want to be a famous figure skater."
response #1 (she's been on ice skates ONCE. ONCE!!!!)
Not picking up on the facial expression I made for Response #1, she continued. "And a famous actress and a famous ballerina and a famous gymnast and..."
I interrupted. "You still haven't told me why Harry Potter is on your poster!"
*glare of death*
Response #2 (because seriously, her glare of death is hysterical)
and this discussion immediately segued into
CRAZY TALK #4
"And mom! Mom. Look what I can do!" Sissy jumped up and proceeded to take her left thumb and bend it back to her wrist. "isn't that amazing! I just learned how to do that today. I never knew I could do that! I saw someone at lunch doing it and then I discovered I could do it too!!!!"
response #1
Leaning in across the table with a crazed look in her eyes, "Seriously mom! This is SO cool. I'm going to be famous. I'm going to go on TV and show people i can do this because if I just learned about it today, think of all the people all over the world that still don't know about this! And I WILL SHOW THEM!"
response #2
followed by the rare response #3: head/desk (I don't do this one often because I'm not fond of headaches).
All that to say, I'm not saying she's stupid, I'm just sayin'
Because, yeah. She'll be 11 in December... 11 going on high-as-a-kite-clueless-and-manic.
That is to say, many times she opens her mouth and something comes out of it and we have one of two reactions:
1. Huh?
2. LMAO
She doesn't usually catch on to response #1 but response #2 makes her angry. Unfortunately, response #2 is the one that happens the most because yowee, zowee, she says some crazy crap. Next to the definition of "narcissist" in the dictionary is Sissy's picture. And speaking of dictionaries and Sissy...
CRAZY TALK #1:
Last week Sissy was arguing with The Dad about the difference between a want and a need. The Dad deferred to the dictionary. He was trying to make the point that Sissy perceives her wants as needs and that she can't have everything she wants even if she thinks she NEEDS it.
The definition of the word "want" was read aloud which was followed by Sissy's anger.
"WHAT!" she fumed. "That's not the right definition!"
The Dad patiently said, "it's in the dictionary. What other definition should there be for the word 'want'?"
And Sissy thinking herself so clever, blustered and blurted, "WELL! That's not MY definition of that word!"
Ever so gently The Dad said, "So... you're smarter than the dictionary now?"
This scenario garnered Response #1 and #2 because "huh? my 10 year old thinks she has better definitions than a dictionary?" was followed by "OMG! That's HYSTERICAL! She REALLY believes the dictionary is wrong and SHE is right!"
Really. she believes the dictionary is wrong.
I mean, what do you even SAY to that?!?
CRAZY TALK #2
Sissy was looking at her cat calendar, flipping through the pictures. "Mom? Are these pictures of REAL cats?
Response #1 followed by my best deadpan facial expression and monotone voice, "no. they're robot cats made to look like the real ones."
"Really?!" she replied, then to herself, "wow, they look so real."
Response #2
CRAZY TALK #3
Sissy had to create a poster for Girl Scouts that was to depict things that inspired her, were interesting to her, made her want to be a better person and things she was hoping to achieve or do when she grew up.
Sissy was excited about the assignment and began cutting out and coloring pictures of the Chippettes. Then she cut up her favorite outfits out of the American Girl doll magazine. Then she cut up her Harry Potter poster mag to plaster the remaining space on the poster (which was 2/3 of it) with a blow up of Harry himself.
All along I kept reminding Sissy of the assignment tasks and directives. But when she was prepared to glue the giant Harry head onto her poster I couldn't take it anymore. "Stop. Why is Harry Potter on that poster?"
"huh?"
"Do you want to be Harry Potter when you grow up?"
"no. I want to be a famous figure skater."
response #1 (she's been on ice skates ONCE. ONCE!!!!)
Not picking up on the facial expression I made for Response #1, she continued. "And a famous actress and a famous ballerina and a famous gymnast and..."
I interrupted. "You still haven't told me why Harry Potter is on your poster!"
*glare of death*
Response #2 (because seriously, her glare of death is hysterical)
and this discussion immediately segued into
CRAZY TALK #4
"And mom! Mom. Look what I can do!" Sissy jumped up and proceeded to take her left thumb and bend it back to her wrist. "isn't that amazing! I just learned how to do that today. I never knew I could do that! I saw someone at lunch doing it and then I discovered I could do it too!!!!"
response #1
Leaning in across the table with a crazed look in her eyes, "Seriously mom! This is SO cool. I'm going to be famous. I'm going to go on TV and show people i can do this because if I just learned about it today, think of all the people all over the world that still don't know about this! And I WILL SHOW THEM!"
response #2
followed by the rare response #3: head/desk (I don't do this one often because I'm not fond of headaches).
All that to say, I'm not saying she's stupid, I'm just sayin'
Because, yeah. She'll be 11 in December... 11 going on high-as-a-kite-clueless-and-manic.
Saturday, November 6, 2010
A momentary lapse of Alturism
13 years in the running, Operation Christmas Child is still an amazing program. We did it with WG's Daisy troop this past week so I decided to do it again with our crew at home. We've done it before but it's been a really long time.
AB had 15,000 questions. Eventually, out of frustration, we declared a "question quota" for the day and that AB had met his. Then he asked, "What's a quota?" and the quick witted Dad said, "sorry. You've met your quota. I can't answer that question until tomorrow." (we've discussed the need to call his doc on Monday to review his meds. AB is speed, speed, speed again)
WG helped me shop for the items. The original thought was to shop together as a family. That was when I was laboring under the delusion that I DON'T have two medically disabled children [1]. I sobered up quickly and phoned The Dad on the way home from WG's dance lesson. "Um. Yeah. So... are AB and Sissy good right now?"
"Yes. Why?"
"right. I have had clarity of mind and opted to shop for the shoebox items with just WG."
"Ah. Good idea."
WG was adorable. She insisted on pushing the shopping cart and had many wonderful suggestions of items to buy. Really, she is an amazing child. I know I see her through rose-colored glasses because I have AB and Sissy to compare her too. Still, I think she's pretty awesome. Did I mention she read her first chapter book and got a 100 on the AR quiz for it? :)
Sissy had a momentary lapse off clear-headed thinking and decided to donate one of her personal puzzles for the cause, a last minute decision as she'd already filled her box and then tried to shove the puzzle on top and attempted to slam the lid shut. Now my RAD mommies and I are thinking the same thoughts 1. did the puzzle have all the pieces? 2. WHY did Sissy volunteer to donate the puzzle? 3. What unspeakable horror of a retribution did you suffer later for her 10 second act of generosity?
Answers:
1. Yes, the puzzle had all of it's pieces
2. Yes, Sissy had ulterior motives for the donation. Her therapist gave her the puzzle and she hates puzzles.
3. Yes, we suffered a retribution. And this time the cold shower DIDN'T work to stop her infernal screaming.
Ten seconds after I refilled her box so the puzzle would fit, Sissy said, "I hope I don't regret donating that."
*sigh*
HOWEVER, to Sissy's credit, I do believe she had a brief glimpse of generosity and how good it feels to benefit someone other than herself. I'm sure that at least 15% of her motivation for donating the puzzle was driven by altruism. Sure, she had difficulty writing a note to a stranger (had to spy on WG's letter for ideas and then copied WG almost completely) but she didn't rage about it. Well, at least not until an hour later.
When I watch the OCC video, I cry. Just thinking about it makes my eyes teary and my throat thick. It's simple, really. I'm doing the mundane task of purchasing some stupid crap from the dollar store and stuffing it in a cardboard box knowing that whoever opens it up will be delighted. By participating in OCC, I'm recovering the hope and joy I thought I would have by choosing to adopt, by making the effort to save children that would otherwise have had a very difficult life.
Except, now when I watch the video, it stings my heart. My first thought is, pbft. All those kids are probably RAD kids too and hate their gifts, destroy the stuff and spit on the name of America. My second thought is but that can't be true. They can't ALL have suffered trauma and abandonment. They can't ALL be ruined by their circumstance. Look at their faces. How can that be not genuine? Which morphs into my third thought So why is MY child so irrevocably damaged when we have SO much available to us in America? Why couldn't MY child be one of those that is OK despite the things that happened to her? Why has my act of altruism been filled with so much pain so that I can't even watch this OCC video without feeling jaded? And there are no answers. There's only Sissy screaming an hour after filling her box.
The OCC video we watched to show the kids what were about to do.
AB fills his box
Sissy fills her box.
There was a picture of WG filling her box too but apparently it has been consumed by the digital camera underlords.
Diligently writing cards to put in their box with photo proof of Sissy spying on WG's progress
The finished product, ready to be taken to church in the morning
[1] Yes, you read that correctly. TWO medically disabled children. We got the letter today, AB's appeal went through and we are beginning the process of starting his SSI. It should be all finalized in the next two weeks. UNBELIEVABLE! With both of them on SSI, it is going to make an incredible difference in our quality of life financially.
AB had 15,000 questions. Eventually, out of frustration, we declared a "question quota" for the day and that AB had met his. Then he asked, "What's a quota?" and the quick witted Dad said, "sorry. You've met your quota. I can't answer that question until tomorrow." (we've discussed the need to call his doc on Monday to review his meds. AB is speed, speed, speed again)
WG helped me shop for the items. The original thought was to shop together as a family. That was when I was laboring under the delusion that I DON'T have two medically disabled children [1]. I sobered up quickly and phoned The Dad on the way home from WG's dance lesson. "Um. Yeah. So... are AB and Sissy good right now?"
"Yes. Why?"
"right. I have had clarity of mind and opted to shop for the shoebox items with just WG."
"Ah. Good idea."
WG was adorable. She insisted on pushing the shopping cart and had many wonderful suggestions of items to buy. Really, she is an amazing child. I know I see her through rose-colored glasses because I have AB and Sissy to compare her too. Still, I think she's pretty awesome. Did I mention she read her first chapter book and got a 100 on the AR quiz for it? :)
Sissy had a momentary lapse off clear-headed thinking and decided to donate one of her personal puzzles for the cause, a last minute decision as she'd already filled her box and then tried to shove the puzzle on top and attempted to slam the lid shut. Now my RAD mommies and I are thinking the same thoughts 1. did the puzzle have all the pieces? 2. WHY did Sissy volunteer to donate the puzzle? 3. What unspeakable horror of a retribution did you suffer later for her 10 second act of generosity?
Answers:
1. Yes, the puzzle had all of it's pieces
2. Yes, Sissy had ulterior motives for the donation. Her therapist gave her the puzzle and she hates puzzles.
3. Yes, we suffered a retribution. And this time the cold shower DIDN'T work to stop her infernal screaming.
Ten seconds after I refilled her box so the puzzle would fit, Sissy said, "I hope I don't regret donating that."
*sigh*
HOWEVER, to Sissy's credit, I do believe she had a brief glimpse of generosity and how good it feels to benefit someone other than herself. I'm sure that at least 15% of her motivation for donating the puzzle was driven by altruism. Sure, she had difficulty writing a note to a stranger (had to spy on WG's letter for ideas and then copied WG almost completely) but she didn't rage about it. Well, at least not until an hour later.
When I watch the OCC video, I cry. Just thinking about it makes my eyes teary and my throat thick. It's simple, really. I'm doing the mundane task of purchasing some stupid crap from the dollar store and stuffing it in a cardboard box knowing that whoever opens it up will be delighted. By participating in OCC, I'm recovering the hope and joy I thought I would have by choosing to adopt, by making the effort to save children that would otherwise have had a very difficult life.
Except, now when I watch the video, it stings my heart. My first thought is, pbft. All those kids are probably RAD kids too and hate their gifts, destroy the stuff and spit on the name of America. My second thought is but that can't be true. They can't ALL have suffered trauma and abandonment. They can't ALL be ruined by their circumstance. Look at their faces. How can that be not genuine? Which morphs into my third thought So why is MY child so irrevocably damaged when we have SO much available to us in America? Why couldn't MY child be one of those that is OK despite the things that happened to her? Why has my act of altruism been filled with so much pain so that I can't even watch this OCC video without feeling jaded? And there are no answers. There's only Sissy screaming an hour after filling her box.
The OCC video we watched to show the kids what were about to do.
Getting ready to fill the boxes
AB fills his box
Sissy fills her box.
There was a picture of WG filling her box too but apparently it has been consumed by the digital camera underlords.
Diligently writing cards to put in their box with photo proof of Sissy spying on WG's progress
The finished product, ready to be taken to church in the morning
[1] Yes, you read that correctly. TWO medically disabled children. We got the letter today, AB's appeal went through and we are beginning the process of starting his SSI. It should be all finalized in the next two weeks. UNBELIEVABLE! With both of them on SSI, it is going to make an incredible difference in our quality of life financially.
Thursday, November 4, 2010
tudu said we could
Got a text from tudusamom this morning:
Would you mind posting a note about our crap or link to this blog to let folks know? I'm getting tons of questions and can't manage them all.
Then I got a worried email from another blogger hoping it was all copasetic. Yep. Rest assured, it's all good.
Tudu said we could.
OK readers, pass it on. My readership is less than half of tudus so I really need your help getting the word out.
If you've not had the chance to meet tudu, you should make the effort (she'll be in Orlando, btw). She amazes me with her resilience. I feel like a big fat whiner about our situation when I consider what she and her DH have done for so many hurting children.
Would you mind posting a note about our crap or link to this blog to let folks know? I'm getting tons of questions and can't manage them all.
Then I got a worried email from another blogger hoping it was all copasetic. Yep. Rest assured, it's all good.
Tudu said we could.
OK readers, pass it on. My readership is less than half of tudus so I really need your help getting the word out.
If you've not had the chance to meet tudu, you should make the effort (she'll be in Orlando, btw). She amazes me with her resilience. I feel like a big fat whiner about our situation when I consider what she and her DH have done for so many hurting children.
Tuesday, November 2, 2010
Here in my security, I've developed a codependency
"She doesn't care? Or is she not ABLE to care?"
Such was the question posed to me by my therapist. I repeated it several times so I could begin to internalize and digest the words. Sissy isn't ABLE to care. It's her illness, not the person. She simply isn't ABLE to care.
It's safe to say those words because it doesn't negate the emotional truth I feel which is that able to care or doesn't give a flying flip, Sissy is still incredibly difficult to live with, even on a good day. And par for the course, she's raged through a manic storm and is getting a three day cool down.
I just can't say it enough. Her three day cool downs after manic storms are unbearable. We all want to say "HOORAY! She's better!" only she's not. 72 hours isn't very long when you know it's going to send her headlong into the next 13 weeks of hell, taking the rest of us right along with her. It's like being in the last car of the roller coaster as the cars climb the first steep hill. The rest of the cars go speeding down the hill at 80 miles an hour but that last car lingers at the top for a split second, watching all the other riders before them descending into the depths, screams of terror already escaping their lips and there is nothing you can do. You're in the last car, gravity and momentum are taking you right down with them, like it or not but for that nanosecond you lament, oh, if only I could just stay here and NOT go down with them!
Lamentations. The moments in which there is an expression of sorrow, mourning, or regret, often demonstratively. Mourning and despair. Chasing pavements that lead no where. It's a waste. The desire to give up is overwhelming.
The trouble with mental health professionals is that they all have an idea about how to help an individual with a particular set of diagnoses and never do the two (or three, or four or five hundred thousand) ideas meet. And should those paths actually cross and parents of the ill be on board with said plan, in all probability insurance will be the bastard that spoils the fun. P doc has ideas for Sissy. CBAY has ideas for Sissy. Her therapist has ideas for Sissy. We have ideas for Sissy. Insurance says, "SAY WHA?! uh, yeah. NO." And the whole train comes to a screeching halt, we all get tossed out, Sissy included and someone, some where in that fray gets a hold of The Dad and I and says, "Well, essentially, it's your problem to sort out so," as they put Sissy's hand back on ours, "good luck."
Then Sissy takes one look at us and rages for the next 17 million hours.
Said to my therapist when I hashed out these emotions, "White noise. I hear white noise incessantly. It's like the sound of a distant train rumbling in the distance. The wheels churn on the tracks in a cadence that unendingly whispers, 'SI-ssy, SI-ssy, SI-ssy, SI-ssy, SI-ssy. I can't think! I can't move! I'm frozen in time and indecision. The other four of us are paralyzed by the incessant, overshadowing, omnipresent needs of an ill child that isn't ABLE to care or change and it always falls on our shoulders to carry the burden. Mental health is broken. And soon so will I be. Instead of Sissy getting a psych ward stay, it'll be me in the hospital bed."
"Why do you keep going back to the thought that it's your fault that Sissy isn't able to change?"
"Because it always falls back on the parents. We can't tell people, 'Hey, we've got a mentally ill child we can't manage; a child whose needs supersede our abilities; a child that isn't able to change and is a threat to the quality of life for the rest of her family.' Professionals might care but insurance sees only the bottom line. Then DFACS sees only who is responsible for the care and is quick to point a finger at abandonment. And society? Those that walk the earth in bliss, never being affected by mental illness? They hurl insults and injurious words unwittingly. Isolation? Hopelessness? Give me a child that 'can't care' and I'll give you an entire family destroyed by mental illness."
I paused, overwhelmed by my emotions and my words. "When Sissy is gone for even a short while, the rest of us are functional, light as air, happy, fulfilled and content. I get a glimpse of what we're all capable of together and separately and it makes me so excited. Then she comes home. She ALWAYS comes home. And in ten minutes flat, her cyclonic affect has destroyed our sanity, we come undone and our quality of life is reduced to subzero again."
"Can you tell the mental health professionals guiding Sissy's care these things? Can you be this real and honest with them about how negatively she impacts all four of you?"
"I have. It's a fruitless endeavor. It all boils down to dollars. You could record these sessions and play them for the whole world but it won't make a difference. Dollars always win. Not me. Not my family. Not mental illness. Dollars. Dollars trump every other card in the deck. And I live my days grasping for a sense of quality. As long as Sissy is our responsibility, we all suffer. I will never be enough for her. I'm her greatest trigger; the fact that I exist, breathe and provide for her makes her insane. But it doesn't matter. I don't matter. WE don't matter. It's only Sissy. SISSY SISSY SISSY SISSY ... "
I stopped to pull myself together then added, "Seven more years. What could my family achieve, do or aspire to, if for the next seven years we could live without the tornado called Sissy? What damage will living with a tornado for seven more years do to my two other children, one of which is also impaired? If we could learn to cage her tornado so the rest of us could live our lives unaffected by her issues ... but no. There is no therapeutic approach to help families in that way. They don't make tornado shelters for families that want to continue living in the house that the tornado is obliterating. The two are mutually exclusive."
We ended the session shortly afterward, time finished it up. I left feeling worse than when I went. I'm tired of trying, fed up when I don't get anything back, for what? For the tiny baby I laid eyes on ten years ago this November. Her haunting eyes refusing to make eye contact with me. A lifeless, joyless bundle in a car seat, one side of her head flat from being stationary for so long, her bottom raw and bloody but she didn't cry in pain, her clothes soaked with urine and her bottle filled with rancid milk. THIS image I see every time I look at Sissy now. Her drawback when I attempted to caress her head, her anger when I tried to tickle her, and those pleading, haunting eyes. I should have known. In that moment I should have known the extreme pain she felt would be the pain I would feel, every day I tried to love her, for the rest of my life. Because I will, though it kill me, though she never be able to care, though her other organic mental health and developmental delays overtake her, though she screams at us that she doesn't like us and will only be good if she's getting something.
I'm no hero. I'm a fool.
There is a parallel universe in another dimension that is right in our midst, right in front of our faces that we can't see or touch. In that universe, Sissy is whole and all five us are living a functional life.
We'll all be free when we can step into that dimension. Until then, I wait and hope that there is enough hero in me to outwit, outlast and outplay the fool in me.
Such was the question posed to me by my therapist. I repeated it several times so I could begin to internalize and digest the words. Sissy isn't ABLE to care. It's her illness, not the person. She simply isn't ABLE to care.
It's safe to say those words because it doesn't negate the emotional truth I feel which is that able to care or doesn't give a flying flip, Sissy is still incredibly difficult to live with, even on a good day. And par for the course, she's raged through a manic storm and is getting a three day cool down.
I just can't say it enough. Her three day cool downs after manic storms are unbearable. We all want to say "HOORAY! She's better!" only she's not. 72 hours isn't very long when you know it's going to send her headlong into the next 13 weeks of hell, taking the rest of us right along with her. It's like being in the last car of the roller coaster as the cars climb the first steep hill. The rest of the cars go speeding down the hill at 80 miles an hour but that last car lingers at the top for a split second, watching all the other riders before them descending into the depths, screams of terror already escaping their lips and there is nothing you can do. You're in the last car, gravity and momentum are taking you right down with them, like it or not but for that nanosecond you lament, oh, if only I could just stay here and NOT go down with them!
Lamentations. The moments in which there is an expression of sorrow, mourning, or regret, often demonstratively. Mourning and despair. Chasing pavements that lead no where. It's a waste. The desire to give up is overwhelming.
The trouble with mental health professionals is that they all have an idea about how to help an individual with a particular set of diagnoses and never do the two (or three, or four or five hundred thousand) ideas meet. And should those paths actually cross and parents of the ill be on board with said plan, in all probability insurance will be the bastard that spoils the fun. P doc has ideas for Sissy. CBAY has ideas for Sissy. Her therapist has ideas for Sissy. We have ideas for Sissy. Insurance says, "SAY WHA?! uh, yeah. NO." And the whole train comes to a screeching halt, we all get tossed out, Sissy included and someone, some where in that fray gets a hold of The Dad and I and says, "Well, essentially, it's your problem to sort out so," as they put Sissy's hand back on ours, "good luck."
Then Sissy takes one look at us and rages for the next 17 million hours.
Said to my therapist when I hashed out these emotions, "White noise. I hear white noise incessantly. It's like the sound of a distant train rumbling in the distance. The wheels churn on the tracks in a cadence that unendingly whispers, 'SI-ssy, SI-ssy, SI-ssy, SI-ssy, SI-ssy. I can't think! I can't move! I'm frozen in time and indecision. The other four of us are paralyzed by the incessant, overshadowing, omnipresent needs of an ill child that isn't ABLE to care or change and it always falls on our shoulders to carry the burden. Mental health is broken. And soon so will I be. Instead of Sissy getting a psych ward stay, it'll be me in the hospital bed."
"Why do you keep going back to the thought that it's your fault that Sissy isn't able to change?"
"Because it always falls back on the parents. We can't tell people, 'Hey, we've got a mentally ill child we can't manage; a child whose needs supersede our abilities; a child that isn't able to change and is a threat to the quality of life for the rest of her family.' Professionals might care but insurance sees only the bottom line. Then DFACS sees only who is responsible for the care and is quick to point a finger at abandonment. And society? Those that walk the earth in bliss, never being affected by mental illness? They hurl insults and injurious words unwittingly. Isolation? Hopelessness? Give me a child that 'can't care' and I'll give you an entire family destroyed by mental illness."
I paused, overwhelmed by my emotions and my words. "When Sissy is gone for even a short while, the rest of us are functional, light as air, happy, fulfilled and content. I get a glimpse of what we're all capable of together and separately and it makes me so excited. Then she comes home. She ALWAYS comes home. And in ten minutes flat, her cyclonic affect has destroyed our sanity, we come undone and our quality of life is reduced to subzero again."
"Can you tell the mental health professionals guiding Sissy's care these things? Can you be this real and honest with them about how negatively she impacts all four of you?"
"I have. It's a fruitless endeavor. It all boils down to dollars. You could record these sessions and play them for the whole world but it won't make a difference. Dollars always win. Not me. Not my family. Not mental illness. Dollars. Dollars trump every other card in the deck. And I live my days grasping for a sense of quality. As long as Sissy is our responsibility, we all suffer. I will never be enough for her. I'm her greatest trigger; the fact that I exist, breathe and provide for her makes her insane. But it doesn't matter. I don't matter. WE don't matter. It's only Sissy. SISSY SISSY SISSY SISSY ... "
I stopped to pull myself together then added, "Seven more years. What could my family achieve, do or aspire to, if for the next seven years we could live without the tornado called Sissy? What damage will living with a tornado for seven more years do to my two other children, one of which is also impaired? If we could learn to cage her tornado so the rest of us could live our lives unaffected by her issues ... but no. There is no therapeutic approach to help families in that way. They don't make tornado shelters for families that want to continue living in the house that the tornado is obliterating. The two are mutually exclusive."
We ended the session shortly afterward, time finished it up. I left feeling worse than when I went. I'm tired of trying, fed up when I don't get anything back, for what? For the tiny baby I laid eyes on ten years ago this November. Her haunting eyes refusing to make eye contact with me. A lifeless, joyless bundle in a car seat, one side of her head flat from being stationary for so long, her bottom raw and bloody but she didn't cry in pain, her clothes soaked with urine and her bottle filled with rancid milk. THIS image I see every time I look at Sissy now. Her drawback when I attempted to caress her head, her anger when I tried to tickle her, and those pleading, haunting eyes. I should have known. In that moment I should have known the extreme pain she felt would be the pain I would feel, every day I tried to love her, for the rest of my life. Because I will, though it kill me, though she never be able to care, though her other organic mental health and developmental delays overtake her, though she screams at us that she doesn't like us and will only be good if she's getting something.
I'm no hero. I'm a fool.
There is a parallel universe in another dimension that is right in our midst, right in front of our faces that we can't see or touch. In that universe, Sissy is whole and all five us are living a functional life.
We'll all be free when we can step into that dimension. Until then, I wait and hope that there is enough hero in me to outwit, outlast and outplay the fool in me.
Monday, November 1, 2010
Another one bites the dust
If you follow my friend tudusamom, she is taking a break from blogging for now for privacy reasons. Pass it on. She has 160+ followers so I know I won't reach everyone that follows her without your help. She'll come back, she's just on hiatus. It seems that the blogosphere just has a hard time understanding our lives with challenged kids.
That said, a few months back I was asked to create a special needs group for RAD parenting. I've neglected that site but am back in the mix, full force. Please feel free to join Support for Special needs and look for the group RADical parenting Perhaps with a login-only site, we can be more open about our emotions as RAD parents without the threat of readers pulling the rug out from under us when they don't have a firm grasp on our situations.
BONUS: there is real-time chat.
So here's the question:
Why do our challenging lives with our challenging children make outsiders nervous?
Let me ask the question another way:
If a friend's child has cancer, do you question whether or not your friend is being an appropriate parent? Or do you just mourn with your friend, hold their hand, hug them, offer them a cooked meal and put the whole family on the prayer chain?
See, because when people make immediate, negative assumptions about parents of challenged children without ever considering that the parents need more support than the child, the whole house of cards is going to come tumbling down.
If you're living a life without challenged children, I challenge you to just embrace parents of challenged children. Don't question, don't judge, don't do anything other than love them, pray for them, support them, hug them, praise them, encourage them, build them up, take them out for coffee, make donations so they can go to Orlando, send them fat quarters (MANY THANKS mamadrama-timestwo!), get them gift cards to Wal.mart or JC.Penney, do something, do ANYTHING to prevent
another RADical parent from biting the dust.
On a lighter note, October marked a year out of the classroom for me. What's changed in that year? I used to listen to NPR. Now I listen Classic Rock. I used to wear heels, jewelry and make up. Now I wear hiking boots, do-rags and royal blue shirts. (I was recently mistaken for being butch. What a hoot!) I used to carry bags of books, pencils and stacks of paper. Now I carry buckets of water, mops and squeegees. I used to get stressed out about my job AND my children. Now I just get stressed out about my children. And best change of all, I used to have Penn State's fight song as my ring tone. Now I have QUEEN! (Bohemian Rhapsody, in case you wondered)
Yes.
Yes I quilt while cranking up the classic rock.
Yes, sometimes I'll still be wearing the do-rag, blue shirt and hiking boots because by the end of the day, I have disgusting hair and it's an awful effort to change clothes just to use a needle and thread.
Yes. That is a strange image.
Yes, The Dad has photo proof of this monstrous sight which he blackmails me with. (Have you seen any snarky images of him on my blog lately? Right. Now you know why. There is a rather hideous digital image of me some where, waiting to be posted on FB if I do not comply.)
You.Tube embedded codes have been removed by request. Here are the linkeroos in case you've got a hankering for some Queen (and really, I can't see how you WOULDN'T want to listen to Queen)
Bohemian Rhapsody
Another one bites the dust
That said, a few months back I was asked to create a special needs group for RAD parenting. I've neglected that site but am back in the mix, full force. Please feel free to join Support for Special needs and look for the group RADical parenting Perhaps with a login-only site, we can be more open about our emotions as RAD parents without the threat of readers pulling the rug out from under us when they don't have a firm grasp on our situations.
BONUS: there is real-time chat.
So here's the question:
Why do our challenging lives with our challenging children make outsiders nervous?
Let me ask the question another way:
If a friend's child has cancer, do you question whether or not your friend is being an appropriate parent? Or do you just mourn with your friend, hold their hand, hug them, offer them a cooked meal and put the whole family on the prayer chain?
See, because when people make immediate, negative assumptions about parents of challenged children without ever considering that the parents need more support than the child, the whole house of cards is going to come tumbling down.
If you're living a life without challenged children, I challenge you to just embrace parents of challenged children. Don't question, don't judge, don't do anything other than love them, pray for them, support them, hug them, praise them, encourage them, build them up, take them out for coffee, make donations so they can go to Orlando, send them fat quarters (MANY THANKS mamadrama-timestwo!), get them gift cards to Wal.mart or JC.Penney, do something, do ANYTHING to prevent
another RADical parent from biting the dust.
On a lighter note, October marked a year out of the classroom for me. What's changed in that year? I used to listen to NPR. Now I listen Classic Rock. I used to wear heels, jewelry and make up. Now I wear hiking boots, do-rags and royal blue shirts. (I was recently mistaken for being butch. What a hoot!) I used to carry bags of books, pencils and stacks of paper. Now I carry buckets of water, mops and squeegees. I used to get stressed out about my job AND my children. Now I just get stressed out about my children. And best change of all, I used to have Penn State's fight song as my ring tone. Now I have QUEEN! (Bohemian Rhapsody, in case you wondered)
Yes.
Yes I quilt while cranking up the classic rock.
Yes, sometimes I'll still be wearing the do-rag, blue shirt and hiking boots because by the end of the day, I have disgusting hair and it's an awful effort to change clothes just to use a needle and thread.
Yes. That is a strange image.
Yes, The Dad has photo proof of this monstrous sight which he blackmails me with. (Have you seen any snarky images of him on my blog lately? Right. Now you know why. There is a rather hideous digital image of me some where, waiting to be posted on FB if I do not comply.)
You.Tube embedded codes have been removed by request. Here are the linkeroos in case you've got a hankering for some Queen (and really, I can't see how you WOULDN'T want to listen to Queen)
Bohemian Rhapsody
Another one bites the dust
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