Social Security non attorney representative from my State CMO says,
"Mom, your children's needs are severe enough to eventually qualify them for social security disability and as a result, medicaid. But, state is so back logged, it will take any where from 6 months to a year just to hear back from them if you're approved."
*head, wall, banging*
Wonder Girls' stitches are out but she can't put her whole weight on her foot, she complains of pain in her achilles tendon (it wasn't severed but the sheath was torn so that's to be anticipated), she still has swelling, it's not completely scabbed over and the doc says we have to treat it as though it was a really bad sprain: ice it down, keep it elevated, stay in the wheel chair, no PE at school for three weeks, healing time is 3-6 months and ... she needs PT.
Right? because in all my spare time I have, I can take Wonder Girl to PT?
*head, wall, banging*
Meanwhile, Sissy escalated twice in the last two days requiring phone calls to IFI. Tonight Ms T came for regular therapy and an hour after she left, Sissy was in full-on rage mode and Ms M had to spend an hour deescalating.
but yeah. Ms T confirmed what Ms M said on Saturday. CMO is reducing our hours to 15 over 3 months. when I told her it could take as long as a year to hear if the children are approved for SSD and medicaid, Ms T said, "yeah, I heard that there's a really long wait"
*head, wall, banging*
You know, it's the strangest thing. I keep getting these really bad headaches ...
And THANK YOU COREY FOR MY LOVE IN A BOX TODAY!
Corey is the fashizzle, she sent me a pampering bath set. So heads up, if you're having a sh!tty life, let Corey know and she'll mail you something! lol
Tuesday, March 30, 2010
Sunday, March 28, 2010
Heat Seeking Missiles
It's not in the RAD books, it's not in the RAD therapy, it's not in ANY therapy, come to mention it, but it is something I've learned to seek out like a heat seeking missile. It's my "Jennie's personality in therapeutic parenting", the ME factor I'm striving for because no matter how many books I read, CDs I listen to or therapy sessions I attend, none of it teaches me how to be just me, the RAD mom. They only teach me how to be a RAD mom. And I can't stop being just me for trying but neither can I stop being a RAD mom. So I'm always on the prowl for just me, The RAD Mom Has Teachable Moments with Sissy
These would be the teachable moments with Sissy that get to her heart quickly, seering indelible truths on it in five minutes or less. Moments that may or may not include touch but always garner a positive emotional and cognitive moment.
I have some rules when I prowl for these moments.
1. Sissy has to be regulated
2. It has to be within 30 minutes of a challenging moment with Sissy that did NOT escalate out of control
3. Siblings have to be out of the way
4. Sissy has to be able to repeat what I'm teaching so that means my language has to be simple and succinct
5. The teachable moment can not last longer than five minutes. Three is best.
6. The teachable moment should not include touch until AFTERWARD and ONLY if I request it
In other words, Sissy can't seek out the affection, I have to offer it. Otherwise, the affection is inappropriate and completely destroys the value of the teachable moment especially if she interrupts the teachable moment seeking misguided physical affection. When she interrupts like that, i fold. The teachable moment is lost.
7. The teachable moment can't be contrived [1] and must be on our feet, making eye contact, speaking in low tones and being very close but not touching.
Typically I'm on one side of the kitchen counter and Sissy's on the other side while I'm dosing her evening medication or getting her a drink, snack or meeting some other banal need. The counter acts as a safety zone for her that prevents touch but I can lean in over the counter and get close to her, demanding her eyes. If we sit, Sissy's brain ends up in her butt and she can't concentrate on my words. Not sure how that brain power works but it's unequivocal. Sitting = dead brain. Standing = living brain.
8. I can not, any under circumstances, be emotionally charged. My responses to Sissy no matter what she says, can not betray any pain or anger. Period. And I have to really dial down the love too, so I don't scare her away or put her off.
OK, now that you know the rules, here's tonight's living example of Just me the RAD Mom Having a Teachable Moment with Sissy
Sissy was getting ready for her shower. Lots of grumbling, grunting, pouting, stomping, you know, typical RAD behavior. I reminded her, "Sissy, when you're in the shower, don't forget to wash your privates. Remember, you might be able to fake me out with the 5's [2], but it won't take me more than 3 days to guess your sneaky ways. Do you know how?"
*grunting*
"Come on Sissy, be honest. How will I know if you're not washing your privates?"
*mumbling while glaring at the floor* "I'll smell."
"Yep! You're right! Good for you!" I said with honest enthusiasm, like a coach rooting for his weakest player that has just accomplished something miraculous. "So what are you going to do about it tonight?" (throwing the problem's solution into her lap)
*more grumbling*
At this point The Dad chimed in, trying to make light of the situation by making it funny. Sissy was beginning to escalate and we were trying to escape that indeterminable loop. I can't remember exactly what he said but here's an example of something he might say when he's lovingly teasing, "Stinkopatamus, that's what the kids will say! You need to wash up to keep the stinky germs away!"
*more grumbling that was turning into growling and clenched teeth from Sissy* So I tried a different approach. "Sissy, when people love you, they like to joke. They're not being mean, they are trying to help you laugh instead of cry."
*she was crying by then and it was just barely going to screaming* "OK Sissy, instead of crying, try saying this when we try to make you laugh, 'MOM! I'm going to soap my bootie, geez!'" I said it with a goofy voice, using silly body language. She didn't parrot me right away but she was intrigued. I continued. "Or how about this? 'OK mom. Do you want to see my shiny Heine when I'm done?'" Still no response. "Come on Sissy, try it out. Say something back that's silly."
*more crying* "It'll help. It will make you feel good. Just try."
"But I don't know what to say!" she wailed.
Then The Dad chimed in, "Try this one, 'Hey mom, wanna see my bubbly butt?'"
She giggled. Aspie Boy, overhearing the fun jumped in, "Yeah, BUBBLE BUTT!"
"OK Sissy, you've got a couple of ideas. Ready to try one?"
More giggling but still with an edge of anger, "I'm gonna make a bubble butt!" and we laughed together and sent her on her way toward the bathroom, laughing instead of screaming, all of us singing "bubble butt!"
While in the shower, she called out her 5's, I asked her if her butt was bubbly, she laughed a little more, albeit tenuously, and we were through what could have become WWIII.
It was after the shower, while in the kitchen dosing her evening meds that I seized the opportunity to have a teachable moment, Just me style.
"Sissy, sometimes families tease one another with love. It's different than teasing from classmates that don't love you. When family teases you, it's to help you laugh instead of cry. Do you understand?"
"No."
"OK. How about this. Laughing helps your heart, your lungs and your brain."
"It does?"
"yep. Doctors have proven it. Laughing helps us be healthier and stronger."
"I didn't know."
"Did you know that crying doesn't help our bodies?"
"No. But when I cry it's because I'm sad or angry or afraid!"
"Yes, we cry when we're sad or when we're angry or afraid. But it doesn't make our organs healthier or stronger." Then I held my pointer finger and my thumb about an inch apart. "If crying is this big," I said, motioning toward the gap between my fingers, "then laughing is THIS big!" I made a huge, rapid gesticulation of my arms flying out as wide as they could go. Sissy's eyes got big.
"that's a lot."
"YES! Laughing is really, really good!"
"I didn't know."
"I know. That's why I'm telling you. That's why it's ok when family teases with love. Family helps you laugh instead of cry. Is remembering to wash your privates really something to cry about?"
"no. but I hate doing it!"
"I know you do. But you have to or you'll smell bad. I don't want you to smell bad, the kids at school will tease you in a BAD way."
"Oh. I didn't know." And she started to cry. I really wanted to hug her but I felt like I could push the teachable moment just a little bit further and hugging would have ended it.
"Sissy, do you know why it's hard for you to laugh?"
"No."
"Because I'm right, aren't I? It's hard for you to laugh, or to hug or to be tickled or to tease, isn't it?"
A little light went on behind her eyes and for the first time in our exchange, she looked me directly in the eyes. "Yes!" Then crying again. "I don't know why!"
"I know why. Would you like to know?" She shook her head yes but looked away. "Do you feel safe for me to tell you? Or will it hurt more to know?"
"I want to know."
"OK. It's hard for you to laugh and hug and be tickled and teased because your first mom didn't teach you how when you were a baby."
"She didn't?"
"Nope. It's sad. She didn't do it on purpose. She has special needs too. She didn't know how to teach you love, laughing, hugging and tickling."
"That is really sad!" And she started to cry again, real crying.
"Yes, it is really sad. When you became my daughter, you were a very sad, sad baby."
"I was?!"
"Yes."
"But babies are supposed to be happy!"
"I know. But you weren't. When I tried to love you or hug you or tickle you, you got angry and tried to hurt me. You did that because you were scared of love and hugging."
"I'm SORRY! I didn't know! I don't do it on purpose!"
I realized she was afraid I was angry with her for not knowing these essential life affirming tools. "Sissy. Look in my eyes. What are they telling you? Are they angry eyes?"
"no. they say love"
"That's right. I love you. It's not your fault you didn't learn. I'm not angry about it. I was worried for you. It made my heart hurt that you were such a sad baby. Look in my eyes. Say these words while you look at me, 'It's not my fault. I don't know how.'"
She struggled with it, but after prompting her and coaching her, she managed to say the words while looking at me. I made sure to give her a huge eye and facial response of love after she did it and she reciprocated the expression.
"It's called Reactive Attachment Disorder, it's one of the special needs you have. It's our job as your family to teach you love, hugs, tickling, laughing and teasing."
"I didn't know."
"That's why I'm telling you." I could see I was starting to lose her and I wanted to make sure she had the important points down. "Sissy, I want you to say these words too. I need your eyes again. 'It's not my first mom's fault either.'" This one was going to be hard and I knew it but I was going for broke.
She struggled and hedged and mumbled under her breath the phrase, while looking down. "Sissy, look at me." I waited until I had her eyes. "It's not your first mom's fault either. She didn't know either. She didn't hurt you on purpose. Can you say, 'It's not my first mom's fault?'" [3]
She did it that time and I could see her countenance change for the better. "Now, you get to learn how to laugh and hug and tickle and tease. Show me how big crying is." She showed me with her two fingers. "Now show me how big laughing is." Reluctantly, she opened her arms very wide like I had done. "Which one makes you healthy and strong?"
"Laughing."
"GOOD! Now, can I give you a hug?" She nodded and walked around the counter to me.
"You're warm." She said as I embraced her.
"Yes, Sissy. Love is warm."
(and my heat seeking missiles are always ready to find it)
[1] it's hard to pull off the arbitrary, off-handed therapeutic moment so that Sissy perceives it as an "oh, by the way" kind of event. It requires that I play out various scenarios, phrases and therapeutic language in my head. The shower is a good venue for the internal dialogues and role playing I do. My objective is to be always ready at the helm. With RADishes, you just never, ever know when you're going to get a golden moment, or when it'll all go to hell in a hand basket in 5 seconds flat. With practice, the dialogues become easier and require less rehearsal.
[2]5's. While at RTC, Sissy learned proper hygiene by calling out "5's!". A female staffer would enter the shower room and Sissy would wave out from behind the curtain, two soapy arms, two soapy legs and a soapy head, 5 soapy body parts in all. But of course, her torso and genitals are not part of the 5's so she'd invariably omit those, in part because the sexual abuse makes touching her genitals an ENORMOUS issue for her (she once got a fungal rash on her backside from months of improper bathing - that was when I realized I had to supervise all of her hygiene)
[3] this could be dangerous language to use with your RADish so BE VERY CAREFUL! In our adoption story, I had a friendship with first mom. Well, as much of a friendship as she is capable of having. Her impairments make her equally challenging. Raising Sissy is like raising first mom, it's uncanny. So I can say "it's not first mom's fault" with certainty and conviction because I know what her needs are and I know she did not wittingly harm Sissy. Point of fact, in her own convoluted way, she LOVES Sissy. It was very hard for her to surrender her rights. But ultimately, and by the grace of God, she was able to recognize that she was unable to parent Sissy (or Aspie Boy or Wonder Girl) and she intentionally chose us to take on the responsibility in part because we had a positive relationship with her prior to her pregnancies
These would be the teachable moments with Sissy that get to her heart quickly, seering indelible truths on it in five minutes or less. Moments that may or may not include touch but always garner a positive emotional and cognitive moment.
I have some rules when I prowl for these moments.
1. Sissy has to be regulated
2. It has to be within 30 minutes of a challenging moment with Sissy that did NOT escalate out of control
3. Siblings have to be out of the way
4. Sissy has to be able to repeat what I'm teaching so that means my language has to be simple and succinct
5. The teachable moment can not last longer than five minutes. Three is best.
6. The teachable moment should not include touch until AFTERWARD and ONLY if I request it
In other words, Sissy can't seek out the affection, I have to offer it. Otherwise, the affection is inappropriate and completely destroys the value of the teachable moment especially if she interrupts the teachable moment seeking misguided physical affection. When she interrupts like that, i fold. The teachable moment is lost.
7. The teachable moment can't be contrived [1] and must be on our feet, making eye contact, speaking in low tones and being very close but not touching.
Typically I'm on one side of the kitchen counter and Sissy's on the other side while I'm dosing her evening medication or getting her a drink, snack or meeting some other banal need. The counter acts as a safety zone for her that prevents touch but I can lean in over the counter and get close to her, demanding her eyes. If we sit, Sissy's brain ends up in her butt and she can't concentrate on my words. Not sure how that brain power works but it's unequivocal. Sitting = dead brain. Standing = living brain.
8. I can not, any under circumstances, be emotionally charged. My responses to Sissy no matter what she says, can not betray any pain or anger. Period. And I have to really dial down the love too, so I don't scare her away or put her off.
OK, now that you know the rules, here's tonight's living example of Just me the RAD Mom Having a Teachable Moment with Sissy
Sissy was getting ready for her shower. Lots of grumbling, grunting, pouting, stomping, you know, typical RAD behavior. I reminded her, "Sissy, when you're in the shower, don't forget to wash your privates. Remember, you might be able to fake me out with the 5's [2], but it won't take me more than 3 days to guess your sneaky ways. Do you know how?"
*grunting*
"Come on Sissy, be honest. How will I know if you're not washing your privates?"
*mumbling while glaring at the floor* "I'll smell."
"Yep! You're right! Good for you!" I said with honest enthusiasm, like a coach rooting for his weakest player that has just accomplished something miraculous. "So what are you going to do about it tonight?" (throwing the problem's solution into her lap)
*more grumbling*
At this point The Dad chimed in, trying to make light of the situation by making it funny. Sissy was beginning to escalate and we were trying to escape that indeterminable loop. I can't remember exactly what he said but here's an example of something he might say when he's lovingly teasing, "Stinkopatamus, that's what the kids will say! You need to wash up to keep the stinky germs away!"
*more grumbling that was turning into growling and clenched teeth from Sissy* So I tried a different approach. "Sissy, when people love you, they like to joke. They're not being mean, they are trying to help you laugh instead of cry."
*she was crying by then and it was just barely going to screaming* "OK Sissy, instead of crying, try saying this when we try to make you laugh, 'MOM! I'm going to soap my bootie, geez!'" I said it with a goofy voice, using silly body language. She didn't parrot me right away but she was intrigued. I continued. "Or how about this? 'OK mom. Do you want to see my shiny Heine when I'm done?'" Still no response. "Come on Sissy, try it out. Say something back that's silly."
*more crying* "It'll help. It will make you feel good. Just try."
"But I don't know what to say!" she wailed.
Then The Dad chimed in, "Try this one, 'Hey mom, wanna see my bubbly butt?'"
She giggled. Aspie Boy, overhearing the fun jumped in, "Yeah, BUBBLE BUTT!"
"OK Sissy, you've got a couple of ideas. Ready to try one?"
More giggling but still with an edge of anger, "I'm gonna make a bubble butt!" and we laughed together and sent her on her way toward the bathroom, laughing instead of screaming, all of us singing "bubble butt!"
While in the shower, she called out her 5's, I asked her if her butt was bubbly, she laughed a little more, albeit tenuously, and we were through what could have become WWIII.
It was after the shower, while in the kitchen dosing her evening meds that I seized the opportunity to have a teachable moment, Just me style.
"Sissy, sometimes families tease one another with love. It's different than teasing from classmates that don't love you. When family teases you, it's to help you laugh instead of cry. Do you understand?"
"No."
"OK. How about this. Laughing helps your heart, your lungs and your brain."
"It does?"
"yep. Doctors have proven it. Laughing helps us be healthier and stronger."
"I didn't know."
"Did you know that crying doesn't help our bodies?"
"No. But when I cry it's because I'm sad or angry or afraid!"
"Yes, we cry when we're sad or when we're angry or afraid. But it doesn't make our organs healthier or stronger." Then I held my pointer finger and my thumb about an inch apart. "If crying is this big," I said, motioning toward the gap between my fingers, "then laughing is THIS big!" I made a huge, rapid gesticulation of my arms flying out as wide as they could go. Sissy's eyes got big.
"that's a lot."
"YES! Laughing is really, really good!"
"I didn't know."
"I know. That's why I'm telling you. That's why it's ok when family teases with love. Family helps you laugh instead of cry. Is remembering to wash your privates really something to cry about?"
"no. but I hate doing it!"
"I know you do. But you have to or you'll smell bad. I don't want you to smell bad, the kids at school will tease you in a BAD way."
"Oh. I didn't know." And she started to cry. I really wanted to hug her but I felt like I could push the teachable moment just a little bit further and hugging would have ended it.
"Sissy, do you know why it's hard for you to laugh?"
"No."
"Because I'm right, aren't I? It's hard for you to laugh, or to hug or to be tickled or to tease, isn't it?"
A little light went on behind her eyes and for the first time in our exchange, she looked me directly in the eyes. "Yes!" Then crying again. "I don't know why!"
"I know why. Would you like to know?" She shook her head yes but looked away. "Do you feel safe for me to tell you? Or will it hurt more to know?"
"I want to know."
"OK. It's hard for you to laugh and hug and be tickled and teased because your first mom didn't teach you how when you were a baby."
"She didn't?"
"Nope. It's sad. She didn't do it on purpose. She has special needs too. She didn't know how to teach you love, laughing, hugging and tickling."
"That is really sad!" And she started to cry again, real crying.
"Yes, it is really sad. When you became my daughter, you were a very sad, sad baby."
"I was?!"
"Yes."
"But babies are supposed to be happy!"
"I know. But you weren't. When I tried to love you or hug you or tickle you, you got angry and tried to hurt me. You did that because you were scared of love and hugging."
"I'm SORRY! I didn't know! I don't do it on purpose!"
I realized she was afraid I was angry with her for not knowing these essential life affirming tools. "Sissy. Look in my eyes. What are they telling you? Are they angry eyes?"
"no. they say love"
"That's right. I love you. It's not your fault you didn't learn. I'm not angry about it. I was worried for you. It made my heart hurt that you were such a sad baby. Look in my eyes. Say these words while you look at me, 'It's not my fault. I don't know how.'"
She struggled with it, but after prompting her and coaching her, she managed to say the words while looking at me. I made sure to give her a huge eye and facial response of love after she did it and she reciprocated the expression.
"It's called Reactive Attachment Disorder, it's one of the special needs you have. It's our job as your family to teach you love, hugs, tickling, laughing and teasing."
"I didn't know."
"That's why I'm telling you." I could see I was starting to lose her and I wanted to make sure she had the important points down. "Sissy, I want you to say these words too. I need your eyes again. 'It's not my first mom's fault either.'" This one was going to be hard and I knew it but I was going for broke.
She struggled and hedged and mumbled under her breath the phrase, while looking down. "Sissy, look at me." I waited until I had her eyes. "It's not your first mom's fault either. She didn't know either. She didn't hurt you on purpose. Can you say, 'It's not my first mom's fault?'" [3]
She did it that time and I could see her countenance change for the better. "Now, you get to learn how to laugh and hug and tickle and tease. Show me how big crying is." She showed me with her two fingers. "Now show me how big laughing is." Reluctantly, she opened her arms very wide like I had done. "Which one makes you healthy and strong?"
"Laughing."
"GOOD! Now, can I give you a hug?" She nodded and walked around the counter to me.
"You're warm." She said as I embraced her.
"Yes, Sissy. Love is warm."
(and my heat seeking missiles are always ready to find it)
[1] it's hard to pull off the arbitrary, off-handed therapeutic moment so that Sissy perceives it as an "oh, by the way" kind of event. It requires that I play out various scenarios, phrases and therapeutic language in my head. The shower is a good venue for the internal dialogues and role playing I do. My objective is to be always ready at the helm. With RADishes, you just never, ever know when you're going to get a golden moment, or when it'll all go to hell in a hand basket in 5 seconds flat. With practice, the dialogues become easier and require less rehearsal.
[2]5's. While at RTC, Sissy learned proper hygiene by calling out "5's!". A female staffer would enter the shower room and Sissy would wave out from behind the curtain, two soapy arms, two soapy legs and a soapy head, 5 soapy body parts in all. But of course, her torso and genitals are not part of the 5's so she'd invariably omit those, in part because the sexual abuse makes touching her genitals an ENORMOUS issue for her (she once got a fungal rash on her backside from months of improper bathing - that was when I realized I had to supervise all of her hygiene)
[3] this could be dangerous language to use with your RADish so BE VERY CAREFUL! In our adoption story, I had a friendship with first mom. Well, as much of a friendship as she is capable of having. Her impairments make her equally challenging. Raising Sissy is like raising first mom, it's uncanny. So I can say "it's not first mom's fault" with certainty and conviction because I know what her needs are and I know she did not wittingly harm Sissy. Point of fact, in her own convoluted way, she LOVES Sissy. It was very hard for her to surrender her rights. But ultimately, and by the grace of God, she was able to recognize that she was unable to parent Sissy (or Aspie Boy or Wonder Girl) and she intentionally chose us to take on the responsibility in part because we had a positive relationship with her prior to her pregnancies
Adoption Speaks?
The very astute essie the accidental mommy has blogged this extraordinary post and it needs to be read by everyone.
She of course referenced another blogger's post discussing whether or not your child might have RAD, Brenda at Living with RAD So I recommend you start with Brenda and then move on to Essie's post for sequential chronology of the blogs.
There are many excellent comments to both of these blogs which I recommend you read. My opinion as commented to Essie is thus:
this is so poignant it is almost tangible.
thank you for putting into words what all of us adoptive moms think, feel, live, grieve and struggle through every single day.
throw into that mix the fact that the professionals still consider the layman's point of view from experienced parents as inconsequential and you've got a recipe for disaster.
if this paradigm is not significantly altered within the next decade, adoptions will cease to occur because the word will be out that it's too d@mn hard to raise damaged children without significant support. The foster system will be burgeoning and in one generation, the streets and jails will be filled with unhealed, uncorraled RADishes, wreaking havoc on society.
------------------------------------
RAD moms, we need to be as vocal as possible, a united front. Foster Abba made a good point when he wrote the following comment to one of my insane posts about the ridiculousness with IFI:
I sometimes wonder if we adoptive parents should start class-action lawsuits against the counties and states that gave us these kids in the first place. No doubt we could show financial, emotional and physical damages for what we've gone through.
(He expounded upon this opinion in THIS post , another excellent opinion.)
The professionals are stabbing in the dark, learning as they go, just as we are. It's easy to want to struggle against the machine but if instead, we work alongside one another to restore sanity and support for adoptive parents that are increasingly being asked to do more, be more, give more for these traumatized children, we have the potential to find long lasting solutions that warrants greater success rates and adult functionality for our RADishes.
GB's Mom wrote THIS post that briefly details the progression of diagnosis and the downward spiral of her daughter's illness over the last 20 years. She has a long term POV and more stories like hers need to be heard and analyzed by professionals!
As Christine wrote in THIS post there is no time-line to healing. But if I might add to her two cents, there should also be no limit of resources available to adoptive parents so we can help our RADishes achieve that healing. Has anyone read through Obama's health care plan? Have you seen how little attention is given to mental health?!? It's alarming. And furthermore, I restate my previous thought, if it were not for the grace, compassion and temerity of adopting families, these children would be squatters in the foster care system, never receiving healing. We need a leg up but instead we're getting beat down with titanium baseball bats!
Lastly, (I love all of my RAD blogging parents and I'm glad to give ya'll a shout-out today), Linda at Faith makes things possible not easy has the following quote in her sidebar:
"Adoption loss is the only trauma in the world where the victims are expected by the whole of society to be grateful."- Rev. Keith C Griffith, MBE
This just says it all. It's not a Hip-Hip-Hooray-I'm-Finally-a-Parent-After-Infertility reality for families that choose to parent through adoption any more than it is a Hip-Hip-Hooray-I-Have-a-New-Family point of view for the adoptee. All of that pretty, superfluous, ridiculousness only makes for good fictional television, movies and literature. But who is writing the harsh realities? Blogging moms of traumatized kids and the adult adoptees that struggled to overcome that trauma. And who is reading those stories? Certainly not enough of the powers-that-be that could be lending a helping hand through appropriate therapies, training, support, finances, health care, etc.
We need to change that.
What about starting a national organization to give voice to adoptive families of traumatized children, one that has the same kind of clout and audience of Autism Speaks?[1] I'm thinking along the lines of something that gets the ears of legislators.
It might be pie-in-the-sky hopes that we could forge this kind of organization, but it needs to happen. Period. Who's with me?
[1]for the record, i don't support Autism Speaks but they are the only organization that I could think of that has the type of advocacy attention that I'm striving for
She of course referenced another blogger's post discussing whether or not your child might have RAD, Brenda at Living with RAD So I recommend you start with Brenda and then move on to Essie's post for sequential chronology of the blogs.
There are many excellent comments to both of these blogs which I recommend you read. My opinion as commented to Essie is thus:
this is so poignant it is almost tangible.
thank you for putting into words what all of us adoptive moms think, feel, live, grieve and struggle through every single day.
throw into that mix the fact that the professionals still consider the layman's point of view from experienced parents as inconsequential and you've got a recipe for disaster.
if this paradigm is not significantly altered within the next decade, adoptions will cease to occur because the word will be out that it's too d@mn hard to raise damaged children without significant support. The foster system will be burgeoning and in one generation, the streets and jails will be filled with unhealed, uncorraled RADishes, wreaking havoc on society.
------------------------------------
RAD moms, we need to be as vocal as possible, a united front. Foster Abba made a good point when he wrote the following comment to one of my insane posts about the ridiculousness with IFI:
I sometimes wonder if we adoptive parents should start class-action lawsuits against the counties and states that gave us these kids in the first place. No doubt we could show financial, emotional and physical damages for what we've gone through.
(He expounded upon this opinion in THIS post , another excellent opinion.)
The professionals are stabbing in the dark, learning as they go, just as we are. It's easy to want to struggle against the machine but if instead, we work alongside one another to restore sanity and support for adoptive parents that are increasingly being asked to do more, be more, give more for these traumatized children, we have the potential to find long lasting solutions that warrants greater success rates and adult functionality for our RADishes.
GB's Mom wrote THIS post that briefly details the progression of diagnosis and the downward spiral of her daughter's illness over the last 20 years. She has a long term POV and more stories like hers need to be heard and analyzed by professionals!
As Christine wrote in THIS post there is no time-line to healing. But if I might add to her two cents, there should also be no limit of resources available to adoptive parents so we can help our RADishes achieve that healing. Has anyone read through Obama's health care plan? Have you seen how little attention is given to mental health?!? It's alarming. And furthermore, I restate my previous thought, if it were not for the grace, compassion and temerity of adopting families, these children would be squatters in the foster care system, never receiving healing. We need a leg up but instead we're getting beat down with titanium baseball bats!
Lastly, (I love all of my RAD blogging parents and I'm glad to give ya'll a shout-out today), Linda at Faith makes things possible not easy has the following quote in her sidebar:
"Adoption loss is the only trauma in the world where the victims are expected by the whole of society to be grateful."- Rev. Keith C Griffith, MBE
This just says it all. It's not a Hip-Hip-Hooray-I'm-Finally-a-Parent-After-Infertility reality for families that choose to parent through adoption any more than it is a Hip-Hip-Hooray-I-Have-a-New-Family point of view for the adoptee. All of that pretty, superfluous, ridiculousness only makes for good fictional television, movies and literature. But who is writing the harsh realities? Blogging moms of traumatized kids and the adult adoptees that struggled to overcome that trauma. And who is reading those stories? Certainly not enough of the powers-that-be that could be lending a helping hand through appropriate therapies, training, support, finances, health care, etc.
We need to change that.
What about starting a national organization to give voice to adoptive families of traumatized children, one that has the same kind of clout and audience of Autism Speaks?[1] I'm thinking along the lines of something that gets the ears of legislators.
It might be pie-in-the-sky hopes that we could forge this kind of organization, but it needs to happen. Period. Who's with me?
[1]for the record, i don't support Autism Speaks but they are the only organization that I could think of that has the type of advocacy attention that I'm striving for
Saturday, March 27, 2010
breaking news from IFI
Ms M just left.
Insurance has bumped down our services. Now we'll get 15 hours over the next 3 months.
That equates to 5 hours a MONTH.
HOW does this make sense?!?!?!
Insurance has bumped down our services. Now we'll get 15 hours over the next 3 months.
That equates to 5 hours a MONTH.
HOW does this make sense?!?!?!
Ready to rehash
So, I've stopped crying and I've played the conversation with the IFI team over and over again in my head and I'm ready to put it here so you can help me sort it through or commiserate with me. Or both. BTW, your comments and support have been so wonderful and many of them have made me cry too. I don't cry this much, like, ever. So maybe it's just the antibiotic? lol
But fair warning. This conversation isn't pretty and if you're already emotionally charged, this just might push you over the edge.
We'll start here. Someone on my other blog asked me what IFI stands for. My answer:
IFI = intensive family intervention
which to wit, actually means, Intensive Sissy Intervention because her family is full of sh!ts that don't know how to help her psychotic behaviors so the therapists have to set them to rights while Sissy smiles glibly with a "see, I told you they were awful to me" look on her face
----------------------------------
We got our butts dragged through the mud this week by the IFI team who claim that Sissy escalates to violence against WG because we are triggering her by not applying the correct parenting techniques and because we address her lying, manipulation and sneaky behaviors instead of ignoring them and because we have to actually "PARENT" her and that requires saying, "no". (IFI woman actually said, "Mom, why does it trigger YOU when Sissy lies? Why do you feel like you have to do something about that? You need to investigate what is wrong with you that makes you want to address all of her lies") O.o
Oh, and this one was fun:
"mom, why do you care if Sissy goes to school with the wrong shoes on PE day and her hair unkempt?"
"it doesn't. Although I am worried about her being picked on but i've learned it's not a battle worth fighting. However, then I'll get emails from the school saying Mrs. S, Sissy was not dressed appropriately for PE, please make sure she wears sneakers or Mrs. S, Sissy is coming to school with sloppy appearance What do I do about THAT? If I don't fuss over Sissy's hygiene and dressing habits, I have to deal with the school wanting to address it"
And IFI woman said, "Why does that become a reflection of you being a bad parent? You need to figure that out."
And I said, "It's not. But what do i tell the school then?!?"
"then you tell US to talk to them."
"But you only give us THREE HOURS A WEEK"
"that's an insurance issue I can't fix"
UGH!!!!!!!!!!!!!!!!!!!!!
We told the IFI woman that the psychiatrist said that some people, no matter what you do, will be sinking ships. At that point, as parents we have to decide if we're going to let our whole family go down with the ship or cut ourselves off from Sissy who is bringing us down. The IFI woman got mad and said to The Dad with a stern tone, "He's a PSYCHIATRIST, Sir. All THEY do is dole out meds. I'm a THERAPIST"
yeah, because her education is ... superior with her master's degree to his PhD/MD?
Oh, and then she said, "it's OK if Sissy forms an attachment to me. We'll worry about her forming an attachment to you later, when she's ready."
What!? I've been trying to attach to this kid for 9 years! She's not forming an attachment to the IFI woman, she's friggin' triangulating! And here's proof:
IFI woman met with Sissy alone for 40 minutes and THEN she met with us. (I specifically told the team from the staring gate to NEVER do that) IFI woman leans in over the table and sets her beady eyes on me, "Mom. Can you tell me what WG was screaming about in the van today?" And her tone was accusatory.
I sat up and scrinched up my nose. "Huh? what are you talking about? WG wasn't screaming.... I'm confused."
"well, Sissy told me that the low point of her day was that WG was screaming in the van. Can you explain that?"
"Uh... she's LYING?!?"
"So WG wasn't screaming in the van?"
"NO!" and then she asked me to explain exactly what all of my parenting skills are when it comes to riding in the van with children so she could analyze whether or not it was sufficient .... *bang head on table!*
all because Sissy lied. And then she says "Mom, you can't address this lie with her because she told it to me while we were in therapy so it's client privilege."
OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!
But it's OK if she pulls the carpet out from under ME?!?
And this one was fun:
IFI woman says to me, "The problem is you're TOO educated. You know too much and that makes you resistant to any suggestions I give you. It would really help if you didn't know as much as you do so you'd be compliant."
Uh. OK. Because EVERY OTHER FRIGGIN' THERAPIST WE'VE HAD IN THE LAST 6 FRIGGIN' YEARS TELLING ME STUFF, TEACHING ME, ASKING ME TO READ BOOKS AND CRAP, THAT SHOULD ALL JUST GO IN THE TRASH CAN?
And then she added (because I didn't actually say the words i typed here but something along those lines) "BUT this is not the same therapy, you've never had an IFI team IN YOU HOME and we are going to get ALL UP IN YOUR BUSINESS." (yeah, she actually said those words)
And I quipped back, "in three hours a week?"
And she got mad and said, "Well, that's an insurance issue that I can't help"
So in three hours a week I'm supposed to completely alter my parenting skills to be exactly as they suggest so they report me in their records as being a compliant parent and then Sissy won't escalate, voila! magic? boy of boy. I must be stupid. Why the heck hadn't I thought of that before the SIX FRIGGIN' YEARS I INVESTED AND THE COUNTLESS BOOKS I'VE READ?!?!?
when I asked her to address the violence, which she had evaded thus far, she said, "well you should have known a traumatic event like WG getting injured would escalate Sissy."
And I said, "I DID! I called the other IFI team member FROM THE ER!!!!"
and she got huffy and said, "Well, I'm sorry! I was out of town!!!!"
so it's my fault that WG's incident escalated Sissy AND it's my fault that NO ONE FROM IFI came to the house FOR A WHOLE WEEK to help Sissy navigate the trauma AND it was COMPLETELY MY RESPONSIBILITY to help her navigate so she wouldn't escalate to violence against WG BUT I DON'T HAVE THE APPROPRIATE TOOLS because I'm too educated and I'm not willing to listen to IFI's Suggestions, suggestions they gave me AFTER THE VIOLENCE, the violence THEY NEVER ADDRESSED?!?!?!?!?!?
Am I the only one that is missing this? Someone help me out here.
Oh, and here's the kick in the pants that IFI woman took the time to explain to us:
If Sissy escalates to violence again so that we need to call the police, the police will say to IFI, "what are these parents doing to prevent the violence" because they'll be thinking report the parents for failure to protect and if we haven't followed IFI's plan to the letter of THEIR law, they'll say to the cops, "well actually, these parents have been noncompliant with our suggestions"
blammo. I get not only WG being injured and potentially removed to foster care because I'm an unsafe parent but I also get a criminal record.
And you want the sock in the gut now?
The IFI woman NEVER ADDRESSED SISSY'S VIOLENCE OR MADE SURE WG DIDN'T NEED THERAPY OR HELP!!!!!!!!!!!!!!!!!!!!! The person in the home that is being injured is being NEGLECTED by IFI but if I continue to let Sissy escalate, I'll be the one that GETS IN TROUBLE!!!!!!!!!!!!!!!!!!!!!!
No amount of telling them that Sissy's illness is progressing four years earlier and faster than Birthmom's who is now considered schizophrenic is helpful to our cause. No amount of explaining that while Birthmom exhibited violence in the home, it was always toward adults, never YOUNGER SIBLINGS matters. No amount of crying desperately that Sissy wears down my resolve so that I might start out each day appropriately managing her issues but by the end of the day, 16 hours later of non stop lying, sneaking, screaming, violence, anger, manipulation and triangulation my resolve to therapeutically parent is destroyed wins a sympathetic ear.
I need more time. Insurance won't give it to us.
I need more help. No one can supply it.
I need respite for myself. I get crickets chirping.
Apparently, I'm to operate as Sissy's 24/7 therapeutic drone care giver, unflinching, stalwart, ever present, 100% of the time. Oh, and be a wife, and mother to two other children, one with special needs diametrically opposed to Sissy's so I have to accurately apply a completely different set of parenting skills with equal determination and skill while helping the youngest overcome her fears and anxieties created by the violence that has been done to her from the eldest, unstable, psychotic child. Oh. And take care of myself. And have a life.
It's impossible.
but no amount of explaining that to IFI helps. It'll still all be my fault, apparently because I'm NOT a drone.
So yeah. I've cried for two days. And of course, that has made Sissy perfectly perfect.
Oh, and Ms T has yet to respond to my email (two days now) and Ms M will be here in an hour to have a session with Sissy. *flat, robotic voice* I'm so excited.
But fair warning. This conversation isn't pretty and if you're already emotionally charged, this just might push you over the edge.
We'll start here. Someone on my other blog asked me what IFI stands for. My answer:
IFI = intensive family intervention
which to wit, actually means, Intensive Sissy Intervention because her family is full of sh!ts that don't know how to help her psychotic behaviors so the therapists have to set them to rights while Sissy smiles glibly with a "see, I told you they were awful to me" look on her face
----------------------------------
We got our butts dragged through the mud this week by the IFI team who claim that Sissy escalates to violence against WG because we are triggering her by not applying the correct parenting techniques and because we address her lying, manipulation and sneaky behaviors instead of ignoring them and because we have to actually "PARENT" her and that requires saying, "no". (IFI woman actually said, "Mom, why does it trigger YOU when Sissy lies? Why do you feel like you have to do something about that? You need to investigate what is wrong with you that makes you want to address all of her lies") O.o
Oh, and this one was fun:
"mom, why do you care if Sissy goes to school with the wrong shoes on PE day and her hair unkempt?"
"it doesn't. Although I am worried about her being picked on but i've learned it's not a battle worth fighting. However, then I'll get emails from the school saying Mrs. S, Sissy was not dressed appropriately for PE, please make sure she wears sneakers or Mrs. S, Sissy is coming to school with sloppy appearance What do I do about THAT? If I don't fuss over Sissy's hygiene and dressing habits, I have to deal with the school wanting to address it"
And IFI woman said, "Why does that become a reflection of you being a bad parent? You need to figure that out."
And I said, "It's not. But what do i tell the school then?!?"
"then you tell US to talk to them."
"But you only give us THREE HOURS A WEEK"
"that's an insurance issue I can't fix"
UGH!!!!!!!!!!!!!!!!!!!!!
We told the IFI woman that the psychiatrist said that some people, no matter what you do, will be sinking ships. At that point, as parents we have to decide if we're going to let our whole family go down with the ship or cut ourselves off from Sissy who is bringing us down. The IFI woman got mad and said to The Dad with a stern tone, "He's a PSYCHIATRIST, Sir. All THEY do is dole out meds. I'm a THERAPIST"
yeah, because her education is ... superior with her master's degree to his PhD/MD?
Oh, and then she said, "it's OK if Sissy forms an attachment to me. We'll worry about her forming an attachment to you later, when she's ready."
What!? I've been trying to attach to this kid for 9 years! She's not forming an attachment to the IFI woman, she's friggin' triangulating! And here's proof:
IFI woman met with Sissy alone for 40 minutes and THEN she met with us. (I specifically told the team from the staring gate to NEVER do that) IFI woman leans in over the table and sets her beady eyes on me, "Mom. Can you tell me what WG was screaming about in the van today?" And her tone was accusatory.
I sat up and scrinched up my nose. "Huh? what are you talking about? WG wasn't screaming.... I'm confused."
"well, Sissy told me that the low point of her day was that WG was screaming in the van. Can you explain that?"
"Uh... she's LYING?!?"
"So WG wasn't screaming in the van?"
"NO!" and then she asked me to explain exactly what all of my parenting skills are when it comes to riding in the van with children so she could analyze whether or not it was sufficient .... *bang head on table!*
all because Sissy lied. And then she says "Mom, you can't address this lie with her because she told it to me while we were in therapy so it's client privilege."
OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!
But it's OK if she pulls the carpet out from under ME?!?
And this one was fun:
IFI woman says to me, "The problem is you're TOO educated. You know too much and that makes you resistant to any suggestions I give you. It would really help if you didn't know as much as you do so you'd be compliant."
Uh. OK. Because EVERY OTHER FRIGGIN' THERAPIST WE'VE HAD IN THE LAST 6 FRIGGIN' YEARS TELLING ME STUFF, TEACHING ME, ASKING ME TO READ BOOKS AND CRAP, THAT SHOULD ALL JUST GO IN THE TRASH CAN?
And then she added (because I didn't actually say the words i typed here but something along those lines) "BUT this is not the same therapy, you've never had an IFI team IN YOU HOME and we are going to get ALL UP IN YOUR BUSINESS." (yeah, she actually said those words)
And I quipped back, "in three hours a week?"
And she got mad and said, "Well, that's an insurance issue that I can't help"
So in three hours a week I'm supposed to completely alter my parenting skills to be exactly as they suggest so they report me in their records as being a compliant parent and then Sissy won't escalate, voila! magic? boy of boy. I must be stupid. Why the heck hadn't I thought of that before the SIX FRIGGIN' YEARS I INVESTED AND THE COUNTLESS BOOKS I'VE READ?!?!?
when I asked her to address the violence, which she had evaded thus far, she said, "well you should have known a traumatic event like WG getting injured would escalate Sissy."
And I said, "I DID! I called the other IFI team member FROM THE ER!!!!"
and she got huffy and said, "Well, I'm sorry! I was out of town!!!!"
so it's my fault that WG's incident escalated Sissy AND it's my fault that NO ONE FROM IFI came to the house FOR A WHOLE WEEK to help Sissy navigate the trauma AND it was COMPLETELY MY RESPONSIBILITY to help her navigate so she wouldn't escalate to violence against WG BUT I DON'T HAVE THE APPROPRIATE TOOLS because I'm too educated and I'm not willing to listen to IFI's Suggestions, suggestions they gave me AFTER THE VIOLENCE, the violence THEY NEVER ADDRESSED?!?!?!?!?!?
Am I the only one that is missing this? Someone help me out here.
Oh, and here's the kick in the pants that IFI woman took the time to explain to us:
If Sissy escalates to violence again so that we need to call the police, the police will say to IFI, "what are these parents doing to prevent the violence" because they'll be thinking report the parents for failure to protect and if we haven't followed IFI's plan to the letter of THEIR law, they'll say to the cops, "well actually, these parents have been noncompliant with our suggestions"
blammo. I get not only WG being injured and potentially removed to foster care because I'm an unsafe parent but I also get a criminal record.
And you want the sock in the gut now?
The IFI woman NEVER ADDRESSED SISSY'S VIOLENCE OR MADE SURE WG DIDN'T NEED THERAPY OR HELP!!!!!!!!!!!!!!!!!!!!! The person in the home that is being injured is being NEGLECTED by IFI but if I continue to let Sissy escalate, I'll be the one that GETS IN TROUBLE!!!!!!!!!!!!!!!!!!!!!!
No amount of telling them that Sissy's illness is progressing four years earlier and faster than Birthmom's who is now considered schizophrenic is helpful to our cause. No amount of explaining that while Birthmom exhibited violence in the home, it was always toward adults, never YOUNGER SIBLINGS matters. No amount of crying desperately that Sissy wears down my resolve so that I might start out each day appropriately managing her issues but by the end of the day, 16 hours later of non stop lying, sneaking, screaming, violence, anger, manipulation and triangulation my resolve to therapeutically parent is destroyed wins a sympathetic ear.
I need more time. Insurance won't give it to us.
I need more help. No one can supply it.
I need respite for myself. I get crickets chirping.
Apparently, I'm to operate as Sissy's 24/7 therapeutic drone care giver, unflinching, stalwart, ever present, 100% of the time. Oh, and be a wife, and mother to two other children, one with special needs diametrically opposed to Sissy's so I have to accurately apply a completely different set of parenting skills with equal determination and skill while helping the youngest overcome her fears and anxieties created by the violence that has been done to her from the eldest, unstable, psychotic child. Oh. And take care of myself. And have a life.
It's impossible.
but no amount of explaining that to IFI helps. It'll still all be my fault, apparently because I'm NOT a drone.
So yeah. I've cried for two days. And of course, that has made Sissy perfectly perfect.
Oh, and Ms T has yet to respond to my email (two days now) and Ms M will be here in an hour to have a session with Sissy. *flat, robotic voice* I'm so excited.
Friday, March 26, 2010
No Fun Run but Fun Mom
In lieu of a track and field day and in light of the upcoming Relay for Life event, the kids school decided to do something called "Fun Run". The kids had to run or walk the track with prizes being awarded for first, second, third and honorable mention.
Sissy detests contests, races, anything competitive. It is a screaming fit waiting to happen. So when I picked her up yesterday, she was bummed. She didn't win anything (no surprise there!) but she held it together and refrained from the typical scream fest. Kudos!
Aspie Boy has been a brute this week, we're still titrating him onto the extended release tablets of Tenex, his ADHD/anti-stim med. So his teachers opted to retain him from participation in the Fun Run as his discipline. They checked with us first, we agreed. So no award for him either.
Wonder Girl, of course, is still non-weight bearing on her leg, in a wheel chair, yeah. No Fun Run for her either.
So I was in the check out at the dollar store and there by the counter are all the party favors including *drum roll* a package of ribbons complete with "WINNER!" medallions! Four in all. Sweet. One for the FUN MOM too.
I picked them up from school but first I put the ribbons in their respective cubbies in the van. You should have heard their squealing! Mine is hanging form the rear view mirror and theirs are hanging around their necks.
Hey, everybody needs a ribbon now and again. Even if you never win the Fun Run.
Sissy detests contests, races, anything competitive. It is a screaming fit waiting to happen. So when I picked her up yesterday, she was bummed. She didn't win anything (no surprise there!) but she held it together and refrained from the typical scream fest. Kudos!
Aspie Boy has been a brute this week, we're still titrating him onto the extended release tablets of Tenex, his ADHD/anti-stim med. So his teachers opted to retain him from participation in the Fun Run as his discipline. They checked with us first, we agreed. So no award for him either.
Wonder Girl, of course, is still non-weight bearing on her leg, in a wheel chair, yeah. No Fun Run for her either.
So I was in the check out at the dollar store and there by the counter are all the party favors including *drum roll* a package of ribbons complete with "WINNER!" medallions! Four in all. Sweet. One for the FUN MOM too.
I picked them up from school but first I put the ribbons in their respective cubbies in the van. You should have heard their squealing! Mine is hanging form the rear view mirror and theirs are hanging around their necks.
Hey, everybody needs a ribbon now and again. Even if you never win the Fun Run.
Thursday, March 25, 2010
still a bucket of tears
I've cried all night, all morning and pulled it together to wash windows at a house that is hosting for the Master's tournament. Then went back to crying.
and I am still dealing with strep, of course.
The more I've played through the ridiculous shouting match with Ms T from our IFI team yesterday, the more I think she was out of line. Some of her points were valid but a lot of her approach and many of the things she said were not appropriate or fair. We literally got our @$$es dragged through the mud last night because she was trying to prove that we were triggering Sissy to the point of violence toward Wonder Girl.
as i'm typing this, my anger is rising up and I need to process correctly so I'm purposefully not going to rehash the details, although I'd REALLY REALLY like to.
So, I left a message saying three things:
1. asking for grace on our behalf, that my husband and I don't communicate that way but he was in excruciating pain from bruised and cracked ribs and pleurisy and on pain meds and muscle relaxers and I have a very severe case of strep and had a fever
2. I told her I would be giving her a signed letter from my therapist that details the nature of our sessions, my personal struggles and that I do not suffer from mental health illness
3. I asked that she please bring us the mission statement, goals and objectives of the IFI program because I felt like perhaps we do not have a clear understanding of the purpose of IFI and I would like to get on correct footing
If I don't get satisfactory results from this approach, I will be calling her supervisor.
Ms M was excellent the other night. Ms T ... not so much. (I'm being polite. VERY polite)
On the flip side, I called the warden from insurance, Ms L because she asked me to let her know what the IFI team was going to do about Sissy's violence toward Wonder Girl. I said that IFI at this time only wants to assess what Sissy's triggers are and to provide us with more appropriate parenting skills. I told Ms L once again, that 3 hours was NOT in any way shape or form sufficient to accomplish this task.
Two hours later I got a phone call from Ms. C. She talked me through the preliminary paper work for social security disability for Sissy. She asked about the other children in the home and I told her about Aspie Boy. So she started the paper work for him too!
OMG! we've been through hell and back the last three weeks but if all of it was so we could finally get BOTH of them on SSDI and Medicaid ... *crying again* ...I don't want to say that this hell has been worth it but, the ends may very well justify the means.
and I am still dealing with strep, of course.
The more I've played through the ridiculous shouting match with Ms T from our IFI team yesterday, the more I think she was out of line. Some of her points were valid but a lot of her approach and many of the things she said were not appropriate or fair. We literally got our @$$es dragged through the mud last night because she was trying to prove that we were triggering Sissy to the point of violence toward Wonder Girl.
as i'm typing this, my anger is rising up and I need to process correctly so I'm purposefully not going to rehash the details, although I'd REALLY REALLY like to.
So, I left a message saying three things:
1. asking for grace on our behalf, that my husband and I don't communicate that way but he was in excruciating pain from bruised and cracked ribs and pleurisy and on pain meds and muscle relaxers and I have a very severe case of strep and had a fever
2. I told her I would be giving her a signed letter from my therapist that details the nature of our sessions, my personal struggles and that I do not suffer from mental health illness
3. I asked that she please bring us the mission statement, goals and objectives of the IFI program because I felt like perhaps we do not have a clear understanding of the purpose of IFI and I would like to get on correct footing
If I don't get satisfactory results from this approach, I will be calling her supervisor.
Ms M was excellent the other night. Ms T ... not so much. (I'm being polite. VERY polite)
On the flip side, I called the warden from insurance, Ms L because she asked me to let her know what the IFI team was going to do about Sissy's violence toward Wonder Girl. I said that IFI at this time only wants to assess what Sissy's triggers are and to provide us with more appropriate parenting skills. I told Ms L once again, that 3 hours was NOT in any way shape or form sufficient to accomplish this task.
Two hours later I got a phone call from Ms. C. She talked me through the preliminary paper work for social security disability for Sissy. She asked about the other children in the home and I told her about Aspie Boy. So she started the paper work for him too!
OMG! we've been through hell and back the last three weeks but if all of it was so we could finally get BOTH of them on SSDI and Medicaid ... *crying again* ...I don't want to say that this hell has been worth it but, the ends may very well justify the means.
Wednesday, March 24, 2010
IFI team comes
IFI team comes and bottom line, we need to change our parenting... again.
because as she said, if we don't follow their suggestions, then if there is a violence escalation and the cops are called they'll ask IFI team what are the PARENTS doing and the IFI team will say, 'well, actually, the parents have not taken our suggestions"
and then there was the "you've had lots of therapy and education in the past but you've never had an IFI team in your home"
to which I said, "yeah, but we need more time, 3 hours a week isn't enough"
to which she said, "it's a matter of insurance"
yep. because ultimately, it's still our fault.
even if i know it's not.
because she's an impaired child
because we're not trained professionals
and because we don't have insurance that gets us more time
and because my two years of behavior mod therapy didn't help RAD
and because the books that I've read I've either misunderstood or the IFI team doesn't support (we had a back and forth discussion about what I've read as it is incongruent with what she said)
and yes, now I'm officially a blubbering idiot, in a heap of tears. Forget the anger, I'm at despair.
how many times do I need to change my parenting styles when ultimately, I don't believe any of it will matter?
because as she said, if we don't follow their suggestions, then if there is a violence escalation and the cops are called they'll ask IFI team what are the PARENTS doing and the IFI team will say, 'well, actually, the parents have not taken our suggestions"
and then there was the "you've had lots of therapy and education in the past but you've never had an IFI team in your home"
to which I said, "yeah, but we need more time, 3 hours a week isn't enough"
to which she said, "it's a matter of insurance"
yep. because ultimately, it's still our fault.
even if i know it's not.
because she's an impaired child
because we're not trained professionals
and because we don't have insurance that gets us more time
and because my two years of behavior mod therapy didn't help RAD
and because the books that I've read I've either misunderstood or the IFI team doesn't support (we had a back and forth discussion about what I've read as it is incongruent with what she said)
and yes, now I'm officially a blubbering idiot, in a heap of tears. Forget the anger, I'm at despair.
how many times do I need to change my parenting styles when ultimately, I don't believe any of it will matter?
IFI team reports
so ...
IFI team says this:
1. violence is never acceptable
2. they need more data to find out what is triggering Sissy to the point of violence against her sister
3. but as long as Sissy is state medicaid and not straight medicaid, we only get 3 hours/week with IFI team
ROCK - Me - HARD PLACE
The IFI team needs more data but they aren't getting more time to gather that data, violence is never acceptable but Sissy can't be removed from the home based on one episode of violence. If Sissy hurts WG to the point of needing medical attention, I get a CPS report filed on me. If I surrender Sissy to foster care because I believe she's a threat in the home, I get a CPS report filed on me.
there is only ONE way out of this loop hole - get more time with IFI so they can either batten down the hatches on Sissy's triggers OR get enough quantifiable data to prove she's too violent to be in the home.
WE NEED THAT MEDICAID!!!!!
This is the most precarious, stressful, gosh-darned awful place to be in. I'm literally snatching WG out of Sissy's way, every time they are in a room together because I have NO IDEA when Sissy is going to lash out.
and let me tell you, she's been a butt. Startin' crap AGAIN this morning. She won't let me catch a break. I'm exhausted, angry, anxious, this is not fun.
IFI team says this:
1. violence is never acceptable
2. they need more data to find out what is triggering Sissy to the point of violence against her sister
3. but as long as Sissy is state medicaid and not straight medicaid, we only get 3 hours/week with IFI team
ROCK - Me - HARD PLACE
The IFI team needs more data but they aren't getting more time to gather that data, violence is never acceptable but Sissy can't be removed from the home based on one episode of violence. If Sissy hurts WG to the point of needing medical attention, I get a CPS report filed on me. If I surrender Sissy to foster care because I believe she's a threat in the home, I get a CPS report filed on me.
there is only ONE way out of this loop hole - get more time with IFI so they can either batten down the hatches on Sissy's triggers OR get enough quantifiable data to prove she's too violent to be in the home.
WE NEED THAT MEDICAID!!!!!
This is the most precarious, stressful, gosh-darned awful place to be in. I'm literally snatching WG out of Sissy's way, every time they are in a room together because I have NO IDEA when Sissy is going to lash out.
and let me tell you, she's been a butt. Startin' crap AGAIN this morning. She won't let me catch a break. I'm exhausted, angry, anxious, this is not fun.
Tuesday, March 23, 2010
Oh goody
because this morning she decided to act out sexually.
and try to claim that I am an abusive parent like the ones that sexually molested her roommates at RTC.
she says she wants to wear straight jeans so she'll look "hot" for the boys.
She says she doesn't want to wear a belt so her pants will pop open in the back and the boys like it if they can see some of her butt.
and more.
but I really don't want to divulge it all.
I kept my calm (she told me all of this while I did dishes - good old basal root ganglia tasks that keep my frontal lobe cognitive reasoning sharp, steady and to the helm). I explained that 10 year old girls don't need to look hot, that grown ups don't need to look hot. That love is not about looking hot. That finding a partner to spend your life with is about learning to love, regardless of what you look like.
joys joys joys.
I nearly ripped the tight pants off her butt but opted for not hearing 25 minutes of ear-drum shattering, screaming and wailing instead.
No problems, those pencil leg jeans can go straight to the trash on laundry day. She'll never be the wiser since she can't keep track of what little is in her space anyway and since she's back to fake gagging at the sight of dirty underwear and thus hasn't touched the laundry since she's been home.
and try to claim that I am an abusive parent like the ones that sexually molested her roommates at RTC.
she says she wants to wear straight jeans so she'll look "hot" for the boys.
She says she doesn't want to wear a belt so her pants will pop open in the back and the boys like it if they can see some of her butt.
and more.
but I really don't want to divulge it all.
I kept my calm (she told me all of this while I did dishes - good old basal root ganglia tasks that keep my frontal lobe cognitive reasoning sharp, steady and to the helm). I explained that 10 year old girls don't need to look hot, that grown ups don't need to look hot. That love is not about looking hot. That finding a partner to spend your life with is about learning to love, regardless of what you look like.
joys joys joys.
I nearly ripped the tight pants off her butt but opted for not hearing 25 minutes of ear-drum shattering, screaming and wailing instead.
No problems, those pencil leg jeans can go straight to the trash on laundry day. She'll never be the wiser since she can't keep track of what little is in her space anyway and since she's back to fake gagging at the sight of dirty underwear and thus hasn't touched the laundry since she's been home.
Monday, March 22, 2010
insurance help
So before discharge, insurance appointed us with a liason through the mental health department of the CMO. This "appointment" has been a little off-putting and I can never tell if Ms. L is fishing for comments from me that are going to come back to haunt me in the end. It's like being interrogated by a defense lawyer. And her questions are all a little ... odd.
So today when she did her weekly call to see how things are going, I clued her in to the episode of this past weekend and my concerns that it will be at maximum, another 2 weeks before Sissy is back to full-on rage with suicidal and homicidal ideation. She asked me what I thought should be done about it. I told her exactly as I've always said, "I'm just a parent that wants to love a kid, not a trained professional. Sissy is not safe in the home without adequate intervention. She will continue to escalate and I don't know what is the best plan for her anymore. Her illness has progressed rapidly and has shown no signs of slowing down."
I think I say this comment, nearly verbatim, every single time she asks me.
But today was a smidgen different. Ms. L wanted to know what the IFI team was going to do. I told her that Ms. M filed an incident report and would be presenting her findings to "the big people" tonight at their weekly meeting so the Bigs could decide the next best plan for Sissy according to their protocol. I explained my frustration that the IFI team can only come 3 hours a week because Sissy is a CMO patient and not a Medicaid patient. I told Ms. L what IFI told me last week which is that medicaid kids get 10-12 hours a week. I added that if we had more adequate intervention for Sissy like 10-12 hours a week, then it might make her more stable in the home environment.
:)
I'm glad I told Ms. L this little extra (point of fact, I didn't know this information myself until last week, but whatevs.)
Ms. L asked me to call her tomorrow to inform her of the IFI team's decision at tonight's meeting and we concluded the call.
Twenty minutes later Ms. L is calling me back. My initial thought was crap. here it comes to bite me on the butt. I've said something out of turn and now I've screwed things up royally this time because honest, I wouldn't put OJ on the stand with Ms. L, she will get the truth out of him once and for all!
Instead, Ms. L says, "I did some research and I've learned that I can make a recommendation that Sissy's case be reviewed to bump her to federal medicaid."
OMG! WOW WOW WOW WOW WOW!!!!!!
"Ms. L!" I shouted, "If you were sitting here with me right now, I'd be kissing you!"
"Now Mom, keep in mind, this referral does not in anyway guarantee..."
I finished her sentence, "... the outcome I'm hoping for, I understand. But you just knocked on a door I couldn't knock on. It's a smidgen of hope I didn't have before and I'll take ANYTHING, even just a knocked-on door at this point!"
"Yes dear, OK then, just remember, this is just a referral and we'll have to wait and see what the review board decides. You may be hearing from them in the next few days."
:) :) :) :) :) :) :)
Let that review board call me. If I flew under Ms. L's radar, I can handle them!
PLEASE PRAY THAT WE GET SISSY ON MEDICAID! This will open up a host of other doors for her as far as treatment goes, in addition to maybe getting us to the golden door of SSDI. We can only hope.
So today when she did her weekly call to see how things are going, I clued her in to the episode of this past weekend and my concerns that it will be at maximum, another 2 weeks before Sissy is back to full-on rage with suicidal and homicidal ideation. She asked me what I thought should be done about it. I told her exactly as I've always said, "I'm just a parent that wants to love a kid, not a trained professional. Sissy is not safe in the home without adequate intervention. She will continue to escalate and I don't know what is the best plan for her anymore. Her illness has progressed rapidly and has shown no signs of slowing down."
I think I say this comment, nearly verbatim, every single time she asks me.
But today was a smidgen different. Ms. L wanted to know what the IFI team was going to do. I told her that Ms. M filed an incident report and would be presenting her findings to "the big people" tonight at their weekly meeting so the Bigs could decide the next best plan for Sissy according to their protocol. I explained my frustration that the IFI team can only come 3 hours a week because Sissy is a CMO patient and not a Medicaid patient. I told Ms. L what IFI told me last week which is that medicaid kids get 10-12 hours a week. I added that if we had more adequate intervention for Sissy like 10-12 hours a week, then it might make her more stable in the home environment.
:)
I'm glad I told Ms. L this little extra (point of fact, I didn't know this information myself until last week, but whatevs.)
Ms. L asked me to call her tomorrow to inform her of the IFI team's decision at tonight's meeting and we concluded the call.
Twenty minutes later Ms. L is calling me back. My initial thought was crap. here it comes to bite me on the butt. I've said something out of turn and now I've screwed things up royally this time because honest, I wouldn't put OJ on the stand with Ms. L, she will get the truth out of him once and for all!
Instead, Ms. L says, "I did some research and I've learned that I can make a recommendation that Sissy's case be reviewed to bump her to federal medicaid."
OMG! WOW WOW WOW WOW WOW!!!!!!
"Ms. L!" I shouted, "If you were sitting here with me right now, I'd be kissing you!"
"Now Mom, keep in mind, this referral does not in anyway guarantee..."
I finished her sentence, "... the outcome I'm hoping for, I understand. But you just knocked on a door I couldn't knock on. It's a smidgen of hope I didn't have before and I'll take ANYTHING, even just a knocked-on door at this point!"
"Yes dear, OK then, just remember, this is just a referral and we'll have to wait and see what the review board decides. You may be hearing from them in the next few days."
:) :) :) :) :) :) :)
Let that review board call me. If I flew under Ms. L's radar, I can handle them!
PLEASE PRAY THAT WE GET SISSY ON MEDICAID! This will open up a host of other doors for her as far as treatment goes, in addition to maybe getting us to the golden door of SSDI. We can only hope.
Sunday, March 21, 2010
ok, now I'm concerned
So, in the last post I mentioned Sissy crashing this afternoon after the culmination of her insane and impossible behavior issues that lead to hurting Wonder Girl in her anger, a deescalation from the IFI team and a possible replacement to RTC looming in the future.
After I wrote the crashing post, some of you responded that your RADishes crash after their RAD storms/manic rages. But what about THIS little twist?
Remember I said that Sissy walked into the wall, right? So after she comes out of her daze-like stupor, she complains of her head hurting. "Mom, when I touch it, it hurts. Bad" i look and she's slightly bruised and swollen above her eyebrow where she smacked into the wall. "Yes, that would be from when you walked into the wall yesterday."
"HUH?" was her reply.
I shrugged it off because I get "HUH?" replies from Sissy all the time and so many of those times she says, "HUH?" it's just to egg me on. But my momma's intuition is telling me she really didn't remember deliberately smacking her head into the wall.
But here's another puzzling thing. She was not just dazed, she was different. Like her doppleganger had been with us for the last two weeks, not Sissy. And that Sissy had returned. Her countenance had changed. She was giddy. Her eyes were sparkly. She was striving to please at all cost, happy to be doing it, no glares of death, no grunting and growling, complete compliance to the point of knowing what do to without being asked, using coping skills, saying she was proud of herself for trying so hard, did all her hygeine and showering without a single issue, stopped herself mid lie several times (literally, was about to complete her sentence and stopped. "oh. sorry. never mind. that's a lie")
O.o
Ok, mine turn.
"WHAT?! HUH!?!"
She took her meds, combed her hair (OMG!), wrote in her journal (OMG!x2) turned out he light and went straight to sleep.
So...
who the heck is sleeping in there?!?!?!? Sissy? Sissy's double?!?!?
Let me tell you, the thought of personality disorder has crossed my mind tonight. And schizophrenia. Did I mention she was talking and singing to herself and using the language "we"?
yeah.
i told GB's Mom in a comment that before RTC, Sissy's manic rages were 15 days of escalation that pinnacled on the 14th or 15th day and then she'd be calm and placid for three days with escalation toward full-on rage directly after the three days. I charted her for months. This was an unmistakable pattern. (the P-doc has the charts)
It begs several questions.
1. if Sissy's still rapid cycling, what on earth are all the meds for? They're clearly not helping. can this even be medicated? She's ON an anti-psychotic so ... how can she still be psychotic? And how the heck did the RTC miss this?!?
2. is Sissy borderline personality disorder or schizophrenic?
3. is it even worth the effort to apply RAD therapy at this point? Her needs seem to far supercede just that issue, so that her RADs is diminutive to the more pressing mental health crises in her mind.
4. unless of course, ya'll tell me that you get this insanity with your RADishes all the time and that this is typical clinical RAD crap (but I'll only buy into that if your RAD doesn't have multiple mental health diagnoses or a dual diagnosis for developmental delay and mental health issues like Sissy does.)
5. in which case, does she need a brief hospital stay as opposed to a long term treatment facility?
I'm officially freaked out. This has been some crazy-scary crap with her this week! I'm betting she has a stellar day at school tomorrow and her teachers email me and say, "WOW! Sissy was amazing today!!!!" (which, for the record, will make me want to hurl because OMG. as if!)
After I wrote the crashing post, some of you responded that your RADishes crash after their RAD storms/manic rages. But what about THIS little twist?
Remember I said that Sissy walked into the wall, right? So after she comes out of her daze-like stupor, she complains of her head hurting. "Mom, when I touch it, it hurts. Bad" i look and she's slightly bruised and swollen above her eyebrow where she smacked into the wall. "Yes, that would be from when you walked into the wall yesterday."
"HUH?" was her reply.
I shrugged it off because I get "HUH?" replies from Sissy all the time and so many of those times she says, "HUH?" it's just to egg me on. But my momma's intuition is telling me she really didn't remember deliberately smacking her head into the wall.
But here's another puzzling thing. She was not just dazed, she was different. Like her doppleganger had been with us for the last two weeks, not Sissy. And that Sissy had returned. Her countenance had changed. She was giddy. Her eyes were sparkly. She was striving to please at all cost, happy to be doing it, no glares of death, no grunting and growling, complete compliance to the point of knowing what do to without being asked, using coping skills, saying she was proud of herself for trying so hard, did all her hygeine and showering without a single issue, stopped herself mid lie several times (literally, was about to complete her sentence and stopped. "oh. sorry. never mind. that's a lie")
O.o
Ok, mine turn.
"WHAT?! HUH!?!"
She took her meds, combed her hair (OMG!), wrote in her journal (OMG!x2) turned out he light and went straight to sleep.
So...
who the heck is sleeping in there?!?!?!? Sissy? Sissy's double?!?!?
Let me tell you, the thought of personality disorder has crossed my mind tonight. And schizophrenia. Did I mention she was talking and singing to herself and using the language "we"?
yeah.
i told GB's Mom in a comment that before RTC, Sissy's manic rages were 15 days of escalation that pinnacled on the 14th or 15th day and then she'd be calm and placid for three days with escalation toward full-on rage directly after the three days. I charted her for months. This was an unmistakable pattern. (the P-doc has the charts)
It begs several questions.
1. if Sissy's still rapid cycling, what on earth are all the meds for? They're clearly not helping. can this even be medicated? She's ON an anti-psychotic so ... how can she still be psychotic? And how the heck did the RTC miss this?!?
2. is Sissy borderline personality disorder or schizophrenic?
3. is it even worth the effort to apply RAD therapy at this point? Her needs seem to far supercede just that issue, so that her RADs is diminutive to the more pressing mental health crises in her mind.
4. unless of course, ya'll tell me that you get this insanity with your RADishes all the time and that this is typical clinical RAD crap (but I'll only buy into that if your RAD doesn't have multiple mental health diagnoses or a dual diagnosis for developmental delay and mental health issues like Sissy does.)
5. in which case, does she need a brief hospital stay as opposed to a long term treatment facility?
I'm officially freaked out. This has been some crazy-scary crap with her this week! I'm betting she has a stellar day at school tomorrow and her teachers email me and say, "WOW! Sissy was amazing today!!!!" (which, for the record, will make me want to hurl because OMG. as if!)
crashing
have ya'll noticed if your RADishes "crash" after a long bout of behavior issues? Sissy passed out cold, snoring and sleep-twitching on the sofa and now she's in a weird stupor kind of daze and doing magnet puzzles (wow, she NEVER does puzzles!!!) and complaining of a head pain just above her right eye, kind of like a peace in the storm that enables her brain to actually function? The eye of a hurricane, maybe? (ugh, I shudder at that thought because it means we're only half way through a RAD storm)
Maybe it's a drug reaction?
Anyway, just wondered if any of you have noticed the same phenomenon with your RADishes after extreme behaviors.
Maybe it's a drug reaction?
Anyway, just wondered if any of you have noticed the same phenomenon with your RADishes after extreme behaviors.
busted
If you haven't already, read last night's post first or this one won't make much sense.
Sissy set off the alarm this morning. big surprise there. The Dad and I knew she'd try it. She feigned ignorance. Of course.
So we told her to stay in her space, that she didn't get to come out until we said so. And that every time she asked "CAN I COME OUT NOW?!?!?!" we'd add another 20 minutes. That was at 8:30. She asked. Alot. She won an escape-from-her-room ticket at 10:20 but first...
I busted her little "hearing" problem.
I brought her her medicine and her breakfast. I said in calm loving tones, "Sissy, this is what family is. This is what love is. You have had very bad behavior but I'm a good mom. I'm taking care of you anyway. Because I love you. Because it is my responsibility. Because this is what family does."
"WHAT?!?!? I didn't hear you!!!" (I was standing practically nose to nose with her.)
"you heard me"
"When do I get to come out?"
"your father already told you."
"I didn't hear! I don't remember!"
"Keep up your screaming and I'll add another 20 minutes and it'll be 10:40" and I walked away.
Screaming, shouting, hollering. *roll eyes*
I gathered my resolve, planned what I would do and re-entered her space.
I leaned in very close and in a barely audible whisper with perfect diction and straight tone, not accusatory or angrily, I said "Sissy, I'm going to talk very, very quietly to you on purpose so you have no choice but to listen to what I'm saying because you 'can't hear' good. You want to know when you come out? 10:20 unless you keep screaming. Then it'll be 10:40. Ok?"
"OK, I got you now" she said loudly to my face without flinching.
I stood straight up and said sternly and equally loudly back, "Yeah. You got me."
Bluff called. Hearing problem - Busted.
I walked out and she hasn't said a word. It's officially five minutes after her release time and I'm not itching to let her out and she's not chomping at the bit or begging to be released. Fancy that.
Sissy set off the alarm this morning. big surprise there. The Dad and I knew she'd try it. She feigned ignorance. Of course.
So we told her to stay in her space, that she didn't get to come out until we said so. And that every time she asked "CAN I COME OUT NOW?!?!?!" we'd add another 20 minutes. That was at 8:30. She asked. Alot. She won an escape-from-her-room ticket at 10:20 but first...
I busted her little "hearing" problem.
I brought her her medicine and her breakfast. I said in calm loving tones, "Sissy, this is what family is. This is what love is. You have had very bad behavior but I'm a good mom. I'm taking care of you anyway. Because I love you. Because it is my responsibility. Because this is what family does."
"WHAT?!?!? I didn't hear you!!!" (I was standing practically nose to nose with her.)
"you heard me"
"When do I get to come out?"
"your father already told you."
"I didn't hear! I don't remember!"
"Keep up your screaming and I'll add another 20 minutes and it'll be 10:40" and I walked away.
Screaming, shouting, hollering. *roll eyes*
I gathered my resolve, planned what I would do and re-entered her space.
I leaned in very close and in a barely audible whisper with perfect diction and straight tone, not accusatory or angrily, I said "Sissy, I'm going to talk very, very quietly to you on purpose so you have no choice but to listen to what I'm saying because you 'can't hear' good. You want to know when you come out? 10:20 unless you keep screaming. Then it'll be 10:40. Ok?"
"OK, I got you now" she said loudly to my face without flinching.
I stood straight up and said sternly and equally loudly back, "Yeah. You got me."
Bluff called. Hearing problem - Busted.
I walked out and she hasn't said a word. It's officially five minutes after her release time and I'm not itching to let her out and she's not chomping at the bit or begging to be released. Fancy that.
Saturday, March 20, 2010
Sissy's Golden Ticket?
I haven't been blogging this week because it's been ridiculous. No, that doesn't even begin to describe the insanity. Think "Perfect Storm" then multiply that times three and that might begin to explain it.
The Dad has bruised ribs from coughing so hard with his flu. Wonder Girl is in a wheel chair with elevated legs because she can't be weight-bearing until the stitches come out next week. Sissy got a double ear infection and then had an allergic reaction to the Z-pack. And now I have what appears to be strep without the fever (thank you thyroid disease, for me a fever that includes the shakes and hallucinations begins at a temperature of 99.5. My core body temp typically hovers around the 96 mark). I've been sleeping on Wonder Girl's bedroom floor all week because she can't get to the bathroom by herself and sometimes she has night pain or get's her leg hung up while she sleeps and because The Dad needs to sleep upright in the bed and be as still as possible to minimize his chest pain.
Sissy recovered quickly from her reaction, I caught it early in the game with only one dose of the z-pack in her system. Her ear pain diminished quickly and her energy returned immediately. So did her lying, her manipulation, her sneakiness, her unrelenting defiance, her anger, all of it. And it's been exponential with each passing day as I've gotten sicker and The Dad has gotten more and more sore and we had a brief scare Wednesday that Wonder Girl was working toward infection despite my meticulous efforts to dress her wound properly and keep her immobile and elevated.
I've missed an entire week of work, my glands and face are so swollen I look like I'm having an allergic reaction to shell fish, The Dad can't move without wincing, Wonder Girl has to be carried to the toilet, it's been the perfect storm times three. Honest to God. And Sissy has taken advantage of it. OMG, has she been ruthless. She has worn us down to the nub. I'm not kidding, the child has literally walked into a tree and into a wall and injured herself, on purpose. You think I'm kidding? I'm not. She is that manipulative and that driven to get the attention. She's even faked us out with a pretend hearing problem so that she is shouting "WHAT!?! I can't hear you!" every time we ask her to do something. She'll even lean in real close like a deaf person would to hear better. But when we're on the other side of the house talking in hushed tones, she knows exactly what we're saying.
And tonight was the pinnacle of her shenanigans. I got a small burst of energy, enough to muscle myself through a trip to W.algreens to pickup the refill of Wonder Girl's antibiotic and the instant I walked out the door, she started her triangulation with The Dad. It's stupid really, I told her this morning that we would be doing a one cup rule after I did two loads of dishes because she uses 10 cups a day for two sips of water. I walk out the door, she gets a drink of water in a new cup, The Dad calls her on it and blammo. It begins.
The next three hours of the evening was one lie and manipulation after the other (including walking into the wall) until she got so angry that she purposefully stepped on Wonder Girl's ankle, in the middle of my redressing the wound. [1]
yes. you read that correctly.
In Sissy's anger, she put the weight of her heel on Wonder Girl's bare ankle, not a centimeter from one of the stitch sites, as she stormed off toward the bathroom to get her things after I told her 4 times to do it and she tried to fake me out with her "WHAT?!?!? I can't hear you? What did you say?!!?" game.
Wonder girl is OK. She's terrified, it took until 11:15 for her to fall asleep, but she's OK. I'm sitting on her bedroom floor typing this from the laptop, not a foot from her sleeping head.
We called the IFI team of course, to deescalate. Ms M, God love her, came over in a jiffy and spent an hour trying to wear down Sissy's resolve to get the truth. Sissy continued to lie and skirt the issues, Ms M kept catching her in the lies and calling her on it, on and on it went. Thank god Ms M not only heard Sissy's anger (from the street before she even got to the front door including Sissy punching the crap out of her bed) but was able to see through the manipulations.
Final call: Ms M will be discussing with "The Big People" on the IFI team. Ms M believes Sissy stepped on Wonder Girl's injured ankle on purpose, that it was not, as Sissy claims, an accident, that it WAS in anger, that our claims that Sissy injured Wonder Girl in the past are valid and that there is cause for concern for Wonder Girl's welfare. Ms M is going to open the discussion for replacing Sissy at RTC on the grounds that she is a threat in the home, that her anger will escalate and that we as parents have done everything we could. Ms M was quite clear. "Mom and Dad, if Sissy had stepped hard enough to pop open Wonder Girl's stitches, you'd be in the ER and the doctors would be pressing charges against YOU for failure to protect Wonder Girl when you knew Sissy was a threat. You have to consider that when you make a decision about the next move for Sissy."
Heard, Ms M. Loud and clear.
Sissy may have just won a golden ticket back to RTC.
Today marked two weeks since she's been home. I shudder to think what she'll be like in two weeks from now.
[1] how did that happen, you ask? My back is killing me from carting Wonder Girl around the house. She was already sitting on the floor with her foot propped up by a pillow, watching TV. I figured, she's distracted, she's immobile, now's as good a time as any to redress her wound not dreaming for a second that Sissy would choose to step on her sister's injured foot instead of WALKING AROUND EITHER ONE OF US. I can play the coulda-shoulda-woulda game all day with myself but it only serves to make me feel bad while ignoring the fact that SISSY made the bad choice, not me. Don't tell me RADishes have bad brain wiring. Any fool knows that you walk AROUND an injured person, no matter where they are. It's not bad brain wiring, it's incomprehensible, intolerable, insufferable, incorrigible and most of all, NOT MY FAULT.
The Dad has bruised ribs from coughing so hard with his flu. Wonder Girl is in a wheel chair with elevated legs because she can't be weight-bearing until the stitches come out next week. Sissy got a double ear infection and then had an allergic reaction to the Z-pack. And now I have what appears to be strep without the fever (thank you thyroid disease, for me a fever that includes the shakes and hallucinations begins at a temperature of 99.5. My core body temp typically hovers around the 96 mark). I've been sleeping on Wonder Girl's bedroom floor all week because she can't get to the bathroom by herself and sometimes she has night pain or get's her leg hung up while she sleeps and because The Dad needs to sleep upright in the bed and be as still as possible to minimize his chest pain.
Sissy recovered quickly from her reaction, I caught it early in the game with only one dose of the z-pack in her system. Her ear pain diminished quickly and her energy returned immediately. So did her lying, her manipulation, her sneakiness, her unrelenting defiance, her anger, all of it. And it's been exponential with each passing day as I've gotten sicker and The Dad has gotten more and more sore and we had a brief scare Wednesday that Wonder Girl was working toward infection despite my meticulous efforts to dress her wound properly and keep her immobile and elevated.
I've missed an entire week of work, my glands and face are so swollen I look like I'm having an allergic reaction to shell fish, The Dad can't move without wincing, Wonder Girl has to be carried to the toilet, it's been the perfect storm times three. Honest to God. And Sissy has taken advantage of it. OMG, has she been ruthless. She has worn us down to the nub. I'm not kidding, the child has literally walked into a tree and into a wall and injured herself, on purpose. You think I'm kidding? I'm not. She is that manipulative and that driven to get the attention. She's even faked us out with a pretend hearing problem so that she is shouting "WHAT!?! I can't hear you!" every time we ask her to do something. She'll even lean in real close like a deaf person would to hear better. But when we're on the other side of the house talking in hushed tones, she knows exactly what we're saying.
And tonight was the pinnacle of her shenanigans. I got a small burst of energy, enough to muscle myself through a trip to W.algreens to pickup the refill of Wonder Girl's antibiotic and the instant I walked out the door, she started her triangulation with The Dad. It's stupid really, I told her this morning that we would be doing a one cup rule after I did two loads of dishes because she uses 10 cups a day for two sips of water. I walk out the door, she gets a drink of water in a new cup, The Dad calls her on it and blammo. It begins.
The next three hours of the evening was one lie and manipulation after the other (including walking into the wall) until she got so angry that she purposefully stepped on Wonder Girl's ankle, in the middle of my redressing the wound. [1]
yes. you read that correctly.
In Sissy's anger, she put the weight of her heel on Wonder Girl's bare ankle, not a centimeter from one of the stitch sites, as she stormed off toward the bathroom to get her things after I told her 4 times to do it and she tried to fake me out with her "WHAT?!?!? I can't hear you? What did you say?!!?" game.
Wonder girl is OK. She's terrified, it took until 11:15 for her to fall asleep, but she's OK. I'm sitting on her bedroom floor typing this from the laptop, not a foot from her sleeping head.
We called the IFI team of course, to deescalate. Ms M, God love her, came over in a jiffy and spent an hour trying to wear down Sissy's resolve to get the truth. Sissy continued to lie and skirt the issues, Ms M kept catching her in the lies and calling her on it, on and on it went. Thank god Ms M not only heard Sissy's anger (from the street before she even got to the front door including Sissy punching the crap out of her bed) but was able to see through the manipulations.
Final call: Ms M will be discussing with "The Big People" on the IFI team. Ms M believes Sissy stepped on Wonder Girl's injured ankle on purpose, that it was not, as Sissy claims, an accident, that it WAS in anger, that our claims that Sissy injured Wonder Girl in the past are valid and that there is cause for concern for Wonder Girl's welfare. Ms M is going to open the discussion for replacing Sissy at RTC on the grounds that she is a threat in the home, that her anger will escalate and that we as parents have done everything we could. Ms M was quite clear. "Mom and Dad, if Sissy had stepped hard enough to pop open Wonder Girl's stitches, you'd be in the ER and the doctors would be pressing charges against YOU for failure to protect Wonder Girl when you knew Sissy was a threat. You have to consider that when you make a decision about the next move for Sissy."
Heard, Ms M. Loud and clear.
Sissy may have just won a golden ticket back to RTC.
Today marked two weeks since she's been home. I shudder to think what she'll be like in two weeks from now.
[1] how did that happen, you ask? My back is killing me from carting Wonder Girl around the house. She was already sitting on the floor with her foot propped up by a pillow, watching TV. I figured, she's distracted, she's immobile, now's as good a time as any to redress her wound not dreaming for a second that Sissy would choose to step on her sister's injured foot instead of WALKING AROUND EITHER ONE OF US. I can play the coulda-shoulda-woulda game all day with myself but it only serves to make me feel bad while ignoring the fact that SISSY made the bad choice, not me. Don't tell me RADishes have bad brain wiring. Any fool knows that you walk AROUND an injured person, no matter where they are. It's not bad brain wiring, it's incomprehensible, intolerable, insufferable, incorrigible and most of all, NOT MY FAULT.
Sunday, March 14, 2010
When trauma is therapeutic
Wonder Girl's mishap occurred yesterday afternoon when I was picking up Sissy from respite. Of course, the house was full of kids with various needs as it was a game-day party. And it was a riotous traumatic mess with police, EMTs, sirens, the works.
It makes me chuckle now, thinking of how it must have appeared to the emergency crew that arrived, walking into a house full of SpEd kids processing the trauma in their own ways. I'm sure it must have put them off a little because the ambulance driver specifically said to me amongst all the hullabaloo, "Mom, you can ride in the truck if you don't freak out too." I laughed and promised her I would keep a level head.
So many kids with so many needs, all of them trying very hard to process the events, the noises, the strangers barging in like storm troopers, I knew for a transitioning Sissy that it could go either way for her but my energies were directed toward Wonder Girl. Once at the ER, I called the IFI team and left a message asking them to call today to check on Sissy to make sure she didn't need to talk through her feelings. According to a few reports, Sissy was pretty upset.
It's hard for me to know exactly when Sissy is upset as an attention getter or when it's genuine. There have been so many times when she has feigned interest, concern or compassion because ... well, who knows why. Regardless, it has made it difficult for me to initially act toward her with empathy when she is upset. In the past, when I've acted like a "regular mom" would when Sissy expresses distress, I've discovered later that I'd either been duped or that her perceived sympathy for another person was really just her way of redirecting the attention toward her.
Even this morning, when she complained of an ear ache, my first thought was sure. her ear hurts. and my big toe has been severed by a phantom ghost ship. She is just acting out because she sees Wonder Girl getting attention And I rebuked myself for being so cynical, took a deep breath and made an honest assessment of Sissy's professed pain. Some tylenol, a heating pad and a decongestant and voila! she's made a miraculous recovery. Perhaps she really did feign pain for attention. Today, I don't care if she played me. I didn't have the energy to sort it through.
Today has been a day of phone calls and well wishers, emails and tears. Wonder Girl is going to be fine and we're all enormously relieved and grateful to God in heaven. The IFI team called and I reported that Sissy seemed to be processing the trauma well enough to wait until Tuesday to see them, Aspie Boy wants to protect his sister at all cost, demanding answers and action and I'm trying to process it all. I'm wondering if I will be able to get the traumatic event out of my memory, the images playing over and over, I'm hoping I won't be headlong back into PTSD and anxiety again, having just recovered and I'm fretting over how Wonder Girl will fare when I called K~ back and got some proof that sometimes, trauma is therapeutic.
K~'s husband B~ was the only dad in the house during yesterday's event and as it were, the hero of the day, carting Aspie Boy and Sissy back to my house and into the semi-capable hands of a drugged Dad (he's just so sick! Poor bunny), picking up Wonder Girl's insurance card and driving to the hospital to bring it to me and to retrieve K~ who drove my van. Did I mention God was amazing to orchestrate all of this so smoothly? Well, I have now.
B~ got a good view of how all the kids with their various needs were managing the event, particularly Sissy and C~, the two RADishes.
In the midst of all the chaos, C~ held Sissy on the sofa and let her cry. Two RADishes helping each other, making each other feel safe and comforted and as B~ added, maybe genuinely feeling empathy for Wonder Girl and not themselves.
I'm not happy Wonder Girl was hurt but I'm amazed that in the middle of trauma, healing can come, bonds of love and friendship can be strengthened and RADishes can find hope in their ability to love.
FYI - Wonder Girl's injuries are miraculous in themselves that she was only hurt on her ankle, that nerves, arteries, veins and tendons were all in tact, that she didn't need surgery and that her scar will be inconspicuous and minimal. THANK YOU GOD!
Saturday, March 13, 2010
not a respite friendly evening
all I will say is this.
It was not a respite-friendly evening.
Due to an unfortunate accident that was completely unavoidable, I spent the evening in the ER with Wonder Girl who is fine despite 26 stitches on her ankle.
I have nothing further to say than "THANK YOU GOD for sparring Wonder Girl's life today!" I could be telling a you a very different story but because God is merciful, Wonder Girl is mine to hug and love for another day.
I don't think I'll be letting her out of my sight any time soon. And I'm about to make The Dad sleep somewhere else despite his cold (he really is quite ill). I want to be as close to Wonder Girl as I can get tonight.
It was not a respite-friendly evening.
Due to an unfortunate accident that was completely unavoidable, I spent the evening in the ER with Wonder Girl who is fine despite 26 stitches on her ankle.
I have nothing further to say than "THANK YOU GOD for sparring Wonder Girl's life today!" I could be telling a you a very different story but because God is merciful, Wonder Girl is mine to hug and love for another day.
I don't think I'll be letting her out of my sight any time soon. And I'm about to make The Dad sleep somewhere else despite his cold (he really is quite ill). I want to be as close to Wonder Girl as I can get tonight.
does time out for your RADish = hell for mom?
The Dad is laid up in the bed, sick.
I've done a preliminary count of Sissy's behavior numbers. If she's spot on with every thing on her list, she'll narrowly meet a yellow level. But she'll be coming home in a little while, which means she'll have a little acting out session and consequently lose behavior and attitude points.
Sissy is with my IRL RAD friend, giving the rest of us respite. I asked my friend to please use RAD friendly language. "Sissy, your mom said you can have this/do this" My friend was on board with the plan. She understands. If the RADish thinks they are getting something their mom doesnt' know about or might not approve of while when with friends, she'll act out when she gets home. Kind of a see?! You're horrible! I got to do cool stuff when I wasn't with you! And consequently, it's an evening of pain and hurt for us when Sissy returns. BUT, if I'm omnipresent because my friend is always tossing the thought of me into conversation while Sissy's away, particularly if it's in expressions of permission, Sissy won't feel like she's getting away with something. Cheeky, ain't I?
And this is why it is so important to leave our RADishes with people "in the know". So many wonderful people offer to watch Sissy for us for a brief while and I genuinely appreciate their support. But for people unaware (or should I say, not cynical from experience?) Sissy will take advantage AND give me h-e-double hockey stix when she returns. It's an issue of boundaries and my lovely friends that want to help aren't always versed in the strictness of boundary required for RADishes.
Even worse, some blogging RAD moms have reported being rebuffed for their boundaries. Others have been told that their specific requests when caring for their RADishes have been directly defied once the door is closed behind them, including conversations with the RADishes that Mom's rules are unreasonable or unnecessary.
Agreed, RAD rules ARE odd, seemingly restrictive and on the outset, might appear as abuse by reason of depravity. In our materialistic society, it's hard for our non RAD parenting peers to understand that food, shelter, education and clothing are all that are required to raise children adequately. Wii, Nintendo DS, XBox, free access to sugary foods, unlimited TV - especially programs that blur the culturally acceptable images of young girls or address sexual issues in overt ways, too many toys, excessive purchases of "stuff", ALL of it is unessential. NONE of it creates safe boundaries for RADishes that are away from home, if even for a few hours on a Saturday.
Psychologists did a study showing that children that played in unfenced areas were so uncertain of their boundaries that the essentially were afraid to play. They stuck close to the house/building and didn't engage in regular active play. But when the children were placed in a confined space with set boundaries, they played with abandon. what's more, the smaller the confined space, the more actively the children played without adult interference. It is the set boundaries that make the difference, an issue of safety and expectation guiding a child's trust in adults and unfamiliar situations. This is thousands of times more poignant for our RADishes.
If you can find a friend that isn't afraid of RAD savvy rules and boundaries, treat them like gold. And take advantage of their generosity as often as possible. And be sure to return the favors!
I'm picking up the phone after I click "publish post" to call D~ so I can retrieve Sissy. I'll be bringing a loaf of freshly baked bread as my "thank you!" because I already know that D! will have made Sissy's visit a RAD friendly one.
With any luck, it will have been safe enough to make a transition back home seamless and easy for Sissy to get those last 8 points and a yellow level status instead of red.
I've done a preliminary count of Sissy's behavior numbers. If she's spot on with every thing on her list, she'll narrowly meet a yellow level. But she'll be coming home in a little while, which means she'll have a little acting out session and consequently lose behavior and attitude points.
Sissy is with my IRL RAD friend, giving the rest of us respite. I asked my friend to please use RAD friendly language. "Sissy, your mom said you can have this/do this" My friend was on board with the plan. She understands. If the RADish thinks they are getting something their mom doesnt' know about or might not approve of while when with friends, she'll act out when she gets home. Kind of a see?! You're horrible! I got to do cool stuff when I wasn't with you! And consequently, it's an evening of pain and hurt for us when Sissy returns. BUT, if I'm omnipresent because my friend is always tossing the thought of me into conversation while Sissy's away, particularly if it's in expressions of permission, Sissy won't feel like she's getting away with something. Cheeky, ain't I?
And this is why it is so important to leave our RADishes with people "in the know". So many wonderful people offer to watch Sissy for us for a brief while and I genuinely appreciate their support. But for people unaware (or should I say, not cynical from experience?) Sissy will take advantage AND give me h-e-double hockey stix when she returns. It's an issue of boundaries and my lovely friends that want to help aren't always versed in the strictness of boundary required for RADishes.
Even worse, some blogging RAD moms have reported being rebuffed for their boundaries. Others have been told that their specific requests when caring for their RADishes have been directly defied once the door is closed behind them, including conversations with the RADishes that Mom's rules are unreasonable or unnecessary.
Agreed, RAD rules ARE odd, seemingly restrictive and on the outset, might appear as abuse by reason of depravity. In our materialistic society, it's hard for our non RAD parenting peers to understand that food, shelter, education and clothing are all that are required to raise children adequately. Wii, Nintendo DS, XBox, free access to sugary foods, unlimited TV - especially programs that blur the culturally acceptable images of young girls or address sexual issues in overt ways, too many toys, excessive purchases of "stuff", ALL of it is unessential. NONE of it creates safe boundaries for RADishes that are away from home, if even for a few hours on a Saturday.
Psychologists did a study showing that children that played in unfenced areas were so uncertain of their boundaries that the essentially were afraid to play. They stuck close to the house/building and didn't engage in regular active play. But when the children were placed in a confined space with set boundaries, they played with abandon. what's more, the smaller the confined space, the more actively the children played without adult interference. It is the set boundaries that make the difference, an issue of safety and expectation guiding a child's trust in adults and unfamiliar situations. This is thousands of times more poignant for our RADishes.
If you can find a friend that isn't afraid of RAD savvy rules and boundaries, treat them like gold. And take advantage of their generosity as often as possible. And be sure to return the favors!
I'm picking up the phone after I click "publish post" to call D~ so I can retrieve Sissy. I'll be bringing a loaf of freshly baked bread as my "thank you!" because I already know that D! will have made Sissy's visit a RAD friendly one.
With any luck, it will have been safe enough to make a transition back home seamless and easy for Sissy to get those last 8 points and a yellow level status instead of red.
Friday, March 12, 2010
levels
well, since our behavior plan specifically says that lying and screaming causes automatic revocation of points for that time period and because Sissy has lied out the wazoo and screamed her pretty little head off four times this week ...
she's going to be on RED level come Sunday.
And she's going to be furious about it.
Oh well.
I've already called the IFI team, not to manage a crisis but to give them a heads up. After they leave, she melts down. So I recommended we do a "cool down" session with me or dad or both before they walk out the door after every visit.
Today Sissy's meltdown was over her lying (AGAIN - will there ever be an end to this ridiculousness?) I called her on it, she lied more. I sent her to her space. She screamed her pretty little head off, chucked things, fumed, then screamed that she wasn't screaming (that part was funny) and generally made a royal @ss of herself. I reminded her, just like during yesterday's melt down, that her 20 minute timeout timer didn't start until she was quiet. More screaming. (Did I mention that I haven't missed the mayhem?)
When I saw she wasn't going to make an attempt to use her coping skills or settle herself down anytime soon, I tried a different tactic. Her curtains were drawn and of course, there's no door and when her lamp is on the curtains are translucent so she can see me coming but I pretended. "Knock, knock. Can I come in?"
"GRRRR!" Long pause followed by a feeble and reluctant, "yes."
I sat down on her bed. "You're mad because you lied and I caught you."
"No!" Followed by more defending of her first lie with bigger, more elaborate lies.
"No, Sissy. You lied."
More of the same from her.
"Sissy, you can admit the lie and move on, or you can keep screaming. Your points for the evening are gone and now, according to our agreement, you'll also have to make it up to your family for making us miserable with all of your screaming." That got her goat and in her utter exasperation, she attempted another lie that in fact, was the truth.
"THANK YOU! you finally said the truth! I know that was hard for you."
More grunting and growling and fists punching herself.
"It must really hurt your heart to have to lie so much and keep making bigger and bigger lies to cover up the first lie."
She quieted and nodded feebly.
"It makes your heart feel better to just tell the truth, doesn't it?"
More nodding, then she reached for a hug. I embraced her and said, "Please don't keep lying, it hurts my heart too. The truth is so much easier."
When she released the hug I said, "So... you have to make it up to me, at least, for having to hear all of that screaming."
Her eyes glowered but I ignored it. "How about dishes? Dusting? Drawing a pretty picture for me? Brushing my hair?" I got staccato head shaking to all of my ideas. But she ventured one.
"What if I play a game with you?"
"Hmmm... that might work."
"Battleship?"
"ummm.... ok!"
We played for 30 minutes and I won but she didn't get mad. She even let me give her some strategy pointers during the game without rebuffing me. We didn't talk much, didn't even make eye contact, but we were sitting on the sofa together, playing a game. And she didn't have another issue for the rest of the night. I'd call this progress!
Here's the thing. What set her off to begin with was that she wanted someone to play with her. But the four of us have gotten pretty set in our routine on Friday afternoons. We're all spent from a long week so we go our separate ways until supper for an unspoken cool down time. This unnerved her. I tried to redirect her back to her space and to many quiet time activities like the rest of us but it only made her pace and whine more. When she saw that Wonder Girl had successfully completed her chore so she could watch her National Geographic movie in her room (a very rare treat!), Sissy was undone. Her lying and manipulation game ensued and although it was negative attention, she still got the attention she was seeking.
I knew all of this when I "knocked" on her door to discuss her lying and her tantrum. She knew it too. She just needed to know it was safe to express it.
Now, if we do this charade another 1000x, do you think she'll have it? It wears me out! Thankfully the other two were happy doing their own cool down time but guess who didn't get hers? Mom.
It's not that I CAN'T help Sissy through these events, or that I WON'T. It's that these events occur so often and take so long, it's that I have two other children, one with very challenging needs that are diametrically opposed to Sissy's, it's that I have a spouse, a business to run, bills, chores, a household to manage, a life, and whether I like it or not, only enough physical energy and strength to muscle through 16 of the 24 hours in a day. It's that I have no reliable respite, it's that the IFI team looks to be only interested in continuing the therapy Sissy got at RTC and not really helping the whole family, it's that there's no end in sight and only a marginal hope that after 1000 SUCCESSFUL events like today MIGHT produce a Sissy that can navigate life without ongoing therapeutic parenting. (And that's not counting the 10,000 UNSUCCESSFUL events we had to get through to have 1000 successful ones)
My IRL friend, C~s mom, is taking her off our hands for a few hours. This is a rare treat. A RAD mom herself, providing respite for me is personal sacrifice to her. But I'm awfully glad she asked. Aspie Boy is trying out a time released version of his med and we have to titrate to the appropriate dosage, starting at the lowest level. So in addition to Sissy, I have Aspie Boy's needs. And The Dad has been ill still. And my back is not recovered (likely owing to making up for The Dad being down for the count while transitioning back to a family of five AND working - today's job was a brute). Massive headache? check. Massive backache? check. weary, exhausted mom that just wants to ball her eyes out into a giant margarita? check.
Pray for me. I announce Sissy's level on Sunday. And she's not going to be happy. at all.
she's going to be on RED level come Sunday.
And she's going to be furious about it.
Oh well.
I've already called the IFI team, not to manage a crisis but to give them a heads up. After they leave, she melts down. So I recommended we do a "cool down" session with me or dad or both before they walk out the door after every visit.
Today Sissy's meltdown was over her lying (AGAIN - will there ever be an end to this ridiculousness?) I called her on it, she lied more. I sent her to her space. She screamed her pretty little head off, chucked things, fumed, then screamed that she wasn't screaming (that part was funny) and generally made a royal @ss of herself. I reminded her, just like during yesterday's melt down, that her 20 minute timeout timer didn't start until she was quiet. More screaming. (Did I mention that I haven't missed the mayhem?)
When I saw she wasn't going to make an attempt to use her coping skills or settle herself down anytime soon, I tried a different tactic. Her curtains were drawn and of course, there's no door and when her lamp is on the curtains are translucent so she can see me coming but I pretended. "Knock, knock. Can I come in?"
"GRRRR!" Long pause followed by a feeble and reluctant, "yes."
I sat down on her bed. "You're mad because you lied and I caught you."
"No!" Followed by more defending of her first lie with bigger, more elaborate lies.
"No, Sissy. You lied."
More of the same from her.
"Sissy, you can admit the lie and move on, or you can keep screaming. Your points for the evening are gone and now, according to our agreement, you'll also have to make it up to your family for making us miserable with all of your screaming." That got her goat and in her utter exasperation, she attempted another lie that in fact, was the truth.
"THANK YOU! you finally said the truth! I know that was hard for you."
More grunting and growling and fists punching herself.
"It must really hurt your heart to have to lie so much and keep making bigger and bigger lies to cover up the first lie."
She quieted and nodded feebly.
"It makes your heart feel better to just tell the truth, doesn't it?"
More nodding, then she reached for a hug. I embraced her and said, "Please don't keep lying, it hurts my heart too. The truth is so much easier."
When she released the hug I said, "So... you have to make it up to me, at least, for having to hear all of that screaming."
Her eyes glowered but I ignored it. "How about dishes? Dusting? Drawing a pretty picture for me? Brushing my hair?" I got staccato head shaking to all of my ideas. But she ventured one.
"What if I play a game with you?"
"Hmmm... that might work."
"Battleship?"
"ummm.... ok!"
We played for 30 minutes and I won but she didn't get mad. She even let me give her some strategy pointers during the game without rebuffing me. We didn't talk much, didn't even make eye contact, but we were sitting on the sofa together, playing a game. And she didn't have another issue for the rest of the night. I'd call this progress!
Here's the thing. What set her off to begin with was that she wanted someone to play with her. But the four of us have gotten pretty set in our routine on Friday afternoons. We're all spent from a long week so we go our separate ways until supper for an unspoken cool down time. This unnerved her. I tried to redirect her back to her space and to many quiet time activities like the rest of us but it only made her pace and whine more. When she saw that Wonder Girl had successfully completed her chore so she could watch her National Geographic movie in her room (a very rare treat!), Sissy was undone. Her lying and manipulation game ensued and although it was negative attention, she still got the attention she was seeking.
I knew all of this when I "knocked" on her door to discuss her lying and her tantrum. She knew it too. She just needed to know it was safe to express it.
Now, if we do this charade another 1000x, do you think she'll have it? It wears me out! Thankfully the other two were happy doing their own cool down time but guess who didn't get hers? Mom.
It's not that I CAN'T help Sissy through these events, or that I WON'T. It's that these events occur so often and take so long, it's that I have two other children, one with very challenging needs that are diametrically opposed to Sissy's, it's that I have a spouse, a business to run, bills, chores, a household to manage, a life, and whether I like it or not, only enough physical energy and strength to muscle through 16 of the 24 hours in a day. It's that I have no reliable respite, it's that the IFI team looks to be only interested in continuing the therapy Sissy got at RTC and not really helping the whole family, it's that there's no end in sight and only a marginal hope that after 1000 SUCCESSFUL events like today MIGHT produce a Sissy that can navigate life without ongoing therapeutic parenting. (And that's not counting the 10,000 UNSUCCESSFUL events we had to get through to have 1000 successful ones)
My IRL friend, C~s mom, is taking her off our hands for a few hours. This is a rare treat. A RAD mom herself, providing respite for me is personal sacrifice to her. But I'm awfully glad she asked. Aspie Boy is trying out a time released version of his med and we have to titrate to the appropriate dosage, starting at the lowest level. So in addition to Sissy, I have Aspie Boy's needs. And The Dad has been ill still. And my back is not recovered (likely owing to making up for The Dad being down for the count while transitioning back to a family of five AND working - today's job was a brute). Massive headache? check. Massive backache? check. weary, exhausted mom that just wants to ball her eyes out into a giant margarita? check.
Pray for me. I announce Sissy's level on Sunday. And she's not going to be happy. at all.
Thursday, March 11, 2010
too many voices ... or not enough?
when there are 10 professionals and 1 parent (although I'd argue that I know more than all of the professionals in measure of experience alone) crammed into a meeting and on speaker phone to discuss the academic needs of an emotionally and behaviorally impaired student it begs the question, are there too many voices advocating for this child, or not enough?
I'm saying too many.
and not enough listening to mom regardless of the final head count.
Was the 504/RTI meeting successful?
Hmm...
yes?
When all was said and done, yes the RTC added PDD-NOS to Sissy's chart. Whatevs. It might mean we won't have to convince insurance to keep her on the waiver for Resperidone because that med is FDA approved for spectral disorders in children as young as 4.
We ended up reducing the number of modifications on her 504 plan because the RTC education team (on speaker phone) said she didn't need those modifications while she was with them. It was noted that she was in a class of 6 at RTC, a facility trained to deal with EBD kids and moving directly to a gen ed class of 29 in which she very likely will need those modifications but since her most recent education documentation demonstrated success without modification, we had to eliminate them.
We added the allowance for the DBT coping skills Sissy learned at RTC that are non evasive in the classroom. Although that may present challenges regardless because those are emotional/behavioral disability therapies that will not be supplied in a general education classroom so that Sissy will have to act on her own recognizance to know when to use them and to use them appropriately. The RTC staff voiced that they had to PROMPT Sissy to use them and the gen ed teacher admitted that this was the first time she'd ever heard of DBT and didn't know how to apply it in the classroom effectively for Sissy. Now if say, Sissy qualified for EBD ...
Despite the 10 professionals in the meeting, the only 2 that needed to be on board with the unspoken secret agenda, were on board. In spades. My off the record conversations with the 504 coordinator and gen ed teacher last Friday and our ability to convincingly put our plan in action in the RTC/504 meeting without actually saying it was our plan, was successful.
In 10 words or less:
we have effectively narrowed Sissy's playing field for triangulation in the classroom in an attempt to ferret out her behaviors during the class day which will in turn demand that she get another RTI meeting that adequately measures her behavioral issues thus qualifying her for EBD IEP status.
ok, that was more than 10 words.
As it stands, she is very narrowly missing tier 3 services, which is one step down from IEP status. Her gen ed teacher and I both noting that since she's only been back for 3 days and already showing some of her quirks from before, it's only a matter of time that she's at tier 3. The 504 coordinator concluded the meeting saying that there is no limit to assessments and RTI meetings needed to get Sissy what she and her family need for academic success, hinting that we'd likely be having another meeting before the school year was out. which was quickly followed up by the IFI team member saying that Sissy was still in her honeymoon period and that they had yet to witness her documented violence ... but that they expected to see it and "here's the crisis plan for when that time comes, please sign here, here and here."
Again, if you are going to read this blog, learn from me.
You have to make your RADishes figurative playpen very small. If they can still escape and show behaviors when others aren't looking, make the playpen smaller. Keep making it smaller and smaller until they are bumping into the sides every time they turn around and either begin a course toward healing in attachment and trusting their caregivers, or acting out in front of the professionals so you can get more adequate help.
small.
very small.
don't be afraid of how small you make it.
the nice young men in white coats aren't going to take YOU away.
Just smile glibly and say, "this is what I know is best for my child. S/he manages better with less." then quote Nancy Thomas, Gregory Keck or Dr. Katherine Leslie (who all say this, BTW).
hint: quotes are exceptionally useful in getting professionals to sit up and listen to parents because if you're sounding smart, you just might be worth listening to
hint: oh yeah, don't forget, NEVER go to a meeting with professionals looking like a harried, stressed out, tired, angry mom that gets very little sleep, an inadequate diet and pitiful exercise. Dress BETTER than them. every time. Even if it means you rip off the bra two seconds after you get to the parking lot.
acronym help:
EBD = emotional/behavioral disability
IEP = individualized education plan
DBT = dilectal behavior therapy
IFI = intensive family intervention
RTI = response to intervention, a 4 tier system that assess student need for IEP
504 = number of the ammendment to the constitution that addresses the rights of the disabled
BTW = by the way(j/k)
j/k = just kidding (j/k... again) lol
I'm saying too many.
and not enough listening to mom regardless of the final head count.
Was the 504/RTI meeting successful?
Hmm...
yes?
When all was said and done, yes the RTC added PDD-NOS to Sissy's chart. Whatevs. It might mean we won't have to convince insurance to keep her on the waiver for Resperidone because that med is FDA approved for spectral disorders in children as young as 4.
We ended up reducing the number of modifications on her 504 plan because the RTC education team (on speaker phone) said she didn't need those modifications while she was with them. It was noted that she was in a class of 6 at RTC, a facility trained to deal with EBD kids and moving directly to a gen ed class of 29 in which she very likely will need those modifications but since her most recent education documentation demonstrated success without modification, we had to eliminate them.
We added the allowance for the DBT coping skills Sissy learned at RTC that are non evasive in the classroom. Although that may present challenges regardless because those are emotional/behavioral disability therapies that will not be supplied in a general education classroom so that Sissy will have to act on her own recognizance to know when to use them and to use them appropriately. The RTC staff voiced that they had to PROMPT Sissy to use them and the gen ed teacher admitted that this was the first time she'd ever heard of DBT and didn't know how to apply it in the classroom effectively for Sissy. Now if say, Sissy qualified for EBD ...
Despite the 10 professionals in the meeting, the only 2 that needed to be on board with the unspoken secret agenda, were on board. In spades. My off the record conversations with the 504 coordinator and gen ed teacher last Friday and our ability to convincingly put our plan in action in the RTC/504 meeting without actually saying it was our plan, was successful.
In 10 words or less:
we have effectively narrowed Sissy's playing field for triangulation in the classroom in an attempt to ferret out her behaviors during the class day which will in turn demand that she get another RTI meeting that adequately measures her behavioral issues thus qualifying her for EBD IEP status.
ok, that was more than 10 words.
As it stands, she is very narrowly missing tier 3 services, which is one step down from IEP status. Her gen ed teacher and I both noting that since she's only been back for 3 days and already showing some of her quirks from before, it's only a matter of time that she's at tier 3. The 504 coordinator concluded the meeting saying that there is no limit to assessments and RTI meetings needed to get Sissy what she and her family need for academic success, hinting that we'd likely be having another meeting before the school year was out. which was quickly followed up by the IFI team member saying that Sissy was still in her honeymoon period and that they had yet to witness her documented violence ... but that they expected to see it and "here's the crisis plan for when that time comes, please sign here, here and here."
Again, if you are going to read this blog, learn from me.
You have to make your RADishes figurative playpen very small. If they can still escape and show behaviors when others aren't looking, make the playpen smaller. Keep making it smaller and smaller until they are bumping into the sides every time they turn around and either begin a course toward healing in attachment and trusting their caregivers, or acting out in front of the professionals so you can get more adequate help.
small.
very small.
don't be afraid of how small you make it.
the nice young men in white coats aren't going to take YOU away.
Just smile glibly and say, "this is what I know is best for my child. S/he manages better with less." then quote Nancy Thomas, Gregory Keck or Dr. Katherine Leslie (who all say this, BTW).
hint: quotes are exceptionally useful in getting professionals to sit up and listen to parents because if you're sounding smart, you just might be worth listening to
hint: oh yeah, don't forget, NEVER go to a meeting with professionals looking like a harried, stressed out, tired, angry mom that gets very little sleep, an inadequate diet and pitiful exercise. Dress BETTER than them. every time. Even if it means you rip off the bra two seconds after you get to the parking lot.
acronym help:
EBD = emotional/behavioral disability
IEP = individualized education plan
DBT = dilectal behavior therapy
IFI = intensive family intervention
RTI = response to intervention, a 4 tier system that assess student need for IEP
504 = number of the ammendment to the constitution that addresses the rights of the disabled
BTW = by the way(j/k)
j/k = just kidding (j/k... again) lol
Tuesday, March 9, 2010
What in blue blazes?
First, my rant for the day, thanks for indulging me.
The school got a copy of the RTC pscych eval and school records last week. I know this for a fact. First, the records dept. at RTC called me. "Mrs. S, we're faxing to your county now." Then the county records dept called me. "Mrs. S, we have RTC records now, we're forwarding to 504 coordinator." Then 504 coordinator called me, "Mrs. S, I am reading over the records as we speak."
agreed? records have been transmitted, yes?
The 504 coordinator calls me later and starts talking smack about Sissy being Asperger's. Then the school calls me and starts talking about Asperger's. Then the IFI team comes to the house and is talking Asperger's. And then it hit me. D@mn. They've all seen those records and I haven't. How much you wanna bet after all was said and done, the RTC listed her as Asperger's when they told us they weren't going to? Then I said, "d@mn, d@mn! I'm gonna show up to that RTI meeting on Wednesday at the school and everyone at that meeting is gonna know crap about my kid that I don't know!" Because here's the kicker. If I want Sissy's records, I have to pay. But if I want her records released to an agency, I don't.
So I called IFI team. "Hey, when you come Tuesday, can you bring your copy of the records? i haven't seen them yet and I don't want to be blind sided at the RTI meeting."
"sure, sure, I'll get them to you."
Then I get a message this morning from IFI team, "mrs. S, we don't have records yet. So we called RTC and they said they haven't been finished yet, that they're still working on them and it might not be until next week. And furthermore, they said we can't let you see them, you'll have to get your own copy."
OH HELL NO. I don't think so.
"Mrs IFI team chicka, county got records LAST THURSDAY."
"HuH? I better call them back."
"please do. I'm not going to a meeting so i can be eaten alive."
"Sure, I understand but you'll still have to get your own copy. and according to them, they won't be ready until next week."
"just call me later when you know something." *click*
*bang head on wall*
Am i missing something? Someone please tell me where I've gone wrong in this equation so I can fix this error. OMG! What in blue blazes is all this crap?!?
I'm beginning to rethink having placed Sissy in RTC. At this point, the only benefit was getting respite for the four of us at home and seriously, it wasn't much respite what with 6 trips a month, therapy sessions, 3 phone calls a week ...
We specifically asked the therapist two weeks ago in phone conference (so hubby can vouch for me) if they were going to formally diagnose a developmental delay. We also asked if a dual diagnosis benefits or harms Sissy's ability to get services. I reminded her for the umpteenth time that RAD kids very frequently get misdiagnosed as spectral but that Sissy's 4 Gillian-Asperger quotient scores and 3 Vineland scores in her records from the last 5 years of psych evals put her just on the outside of diagnosable, even for PDD-NOS. Therapist said she'd talk to the psychiatrist and get back to me in our phone conference with the treatment team last Tuesday. But last Tuesday the psychiatrist was sick and the "treatment team' ended up being only the "education team" who was all about calling Sissy an Asperger kid. The Dad called the out - "uh, are you guys PHYSICIANS as well as educators? Because as far as we know, Sissy's not been diagnosed Asperger's...."
I'm going to scream. 100 days at an RTC and they are rewriting her diagnoses? Seriously? What the heck do those phantom records say anyway? no one knows. Some people say they've seen them, the IFI team tells me they don't exist yet ... Do the 9 years of psychometric tests I've filled out before placement mean nothing? The two years of behavior mod weekly therapy with trained professoinals that work with spectral kids every day having NEVER said, "we think she's aspergers", the seven months of bimonthly psychiatry visits before placement, none of it matters? I made sure all of it was forwarded to RTC. Including the RAD therapists notes that Sissy had 48 out of 50 on the RADQ and that RADs is typically misdiagnosed as spectral.
OK. So if you're going to read my blog, then at least learn from me.
#1 - RTC for RAD kids is useless. It's a vacation for the traumatized family. Get them placed? Book a cruise. Seriously. You think I'm joking, I'm not.
#2 - Don't let RTC bully you into all the d@mn therapy appointments. you need respite and they're not reporting you to child protective services if you don't participate the way they want you to
#3 - get a treatment plan in writing. on the day of admissions. Do not leave until they hand you a treatment plan for your child
#4 - do not forward documents to the RTC from your child's physicians at home beyond the admitting forms from the attending physician.
#5 - do not sign releases of records from the RTC to other agencies when your child is discharged with the exception of medication documents and grades as applicable
#6 - stand your ground. If you're in double jeopardy (criminal record if you refuse to take your kid back and criminal record if your kid is returned to you and s/he hurts a family member and you failed to protect) then stand your ground. Don't let them bully you. No matter what, no matter who, YOU ARE IN CHARGE. PERIOD.
until the nice young men in coats come hauling your @ss to a pysch facility too, YOU ARE IN CHARGE. YOU ALONE KNOW YOUR KID. YOU.
If the rest of the nanny goats and billy goats want to butt heads with each other, let them at it. They can get the migraines. Only YOU have to go home to your kid at night, turn on an alarm and pray to God it isn't set off at 3 am.
The school got a copy of the RTC pscych eval and school records last week. I know this for a fact. First, the records dept. at RTC called me. "Mrs. S, we're faxing to your county now." Then the county records dept called me. "Mrs. S, we have RTC records now, we're forwarding to 504 coordinator." Then 504 coordinator called me, "Mrs. S, I am reading over the records as we speak."
agreed? records have been transmitted, yes?
The 504 coordinator calls me later and starts talking smack about Sissy being Asperger's. Then the school calls me and starts talking about Asperger's. Then the IFI team comes to the house and is talking Asperger's. And then it hit me. D@mn. They've all seen those records and I haven't. How much you wanna bet after all was said and done, the RTC listed her as Asperger's when they told us they weren't going to? Then I said, "d@mn, d@mn! I'm gonna show up to that RTI meeting on Wednesday at the school and everyone at that meeting is gonna know crap about my kid that I don't know!" Because here's the kicker. If I want Sissy's records, I have to pay. But if I want her records released to an agency, I don't.
So I called IFI team. "Hey, when you come Tuesday, can you bring your copy of the records? i haven't seen them yet and I don't want to be blind sided at the RTI meeting."
"sure, sure, I'll get them to you."
Then I get a message this morning from IFI team, "mrs. S, we don't have records yet. So we called RTC and they said they haven't been finished yet, that they're still working on them and it might not be until next week. And furthermore, they said we can't let you see them, you'll have to get your own copy."
OH HELL NO. I don't think so.
"Mrs IFI team chicka, county got records LAST THURSDAY."
"HuH? I better call them back."
"please do. I'm not going to a meeting so i can be eaten alive."
"Sure, I understand but you'll still have to get your own copy. and according to them, they won't be ready until next week."
"just call me later when you know something." *click*
*bang head on wall*
Am i missing something? Someone please tell me where I've gone wrong in this equation so I can fix this error. OMG! What in blue blazes is all this crap?!?
I'm beginning to rethink having placed Sissy in RTC. At this point, the only benefit was getting respite for the four of us at home and seriously, it wasn't much respite what with 6 trips a month, therapy sessions, 3 phone calls a week ...
We specifically asked the therapist two weeks ago in phone conference (so hubby can vouch for me) if they were going to formally diagnose a developmental delay. We also asked if a dual diagnosis benefits or harms Sissy's ability to get services. I reminded her for the umpteenth time that RAD kids very frequently get misdiagnosed as spectral but that Sissy's 4 Gillian-Asperger quotient scores and 3 Vineland scores in her records from the last 5 years of psych evals put her just on the outside of diagnosable, even for PDD-NOS. Therapist said she'd talk to the psychiatrist and get back to me in our phone conference with the treatment team last Tuesday. But last Tuesday the psychiatrist was sick and the "treatment team' ended up being only the "education team" who was all about calling Sissy an Asperger kid. The Dad called the out - "uh, are you guys PHYSICIANS as well as educators? Because as far as we know, Sissy's not been diagnosed Asperger's...."
I'm going to scream. 100 days at an RTC and they are rewriting her diagnoses? Seriously? What the heck do those phantom records say anyway? no one knows. Some people say they've seen them, the IFI team tells me they don't exist yet ... Do the 9 years of psychometric tests I've filled out before placement mean nothing? The two years of behavior mod weekly therapy with trained professoinals that work with spectral kids every day having NEVER said, "we think she's aspergers", the seven months of bimonthly psychiatry visits before placement, none of it matters? I made sure all of it was forwarded to RTC. Including the RAD therapists notes that Sissy had 48 out of 50 on the RADQ and that RADs is typically misdiagnosed as spectral.
OK. So if you're going to read my blog, then at least learn from me.
#1 - RTC for RAD kids is useless. It's a vacation for the traumatized family. Get them placed? Book a cruise. Seriously. You think I'm joking, I'm not.
#2 - Don't let RTC bully you into all the d@mn therapy appointments. you need respite and they're not reporting you to child protective services if you don't participate the way they want you to
#3 - get a treatment plan in writing. on the day of admissions. Do not leave until they hand you a treatment plan for your child
#4 - do not forward documents to the RTC from your child's physicians at home beyond the admitting forms from the attending physician.
#5 - do not sign releases of records from the RTC to other agencies when your child is discharged with the exception of medication documents and grades as applicable
#6 - stand your ground. If you're in double jeopardy (criminal record if you refuse to take your kid back and criminal record if your kid is returned to you and s/he hurts a family member and you failed to protect) then stand your ground. Don't let them bully you. No matter what, no matter who, YOU ARE IN CHARGE. PERIOD.
until the nice young men in coats come hauling your @ss to a pysch facility too, YOU ARE IN CHARGE. YOU ALONE KNOW YOUR KID. YOU.
If the rest of the nanny goats and billy goats want to butt heads with each other, let them at it. They can get the migraines. Only YOU have to go home to your kid at night, turn on an alarm and pray to God it isn't set off at 3 am.
Monday, March 8, 2010
pictures of my morning
4 hours of work, it was finally organized and tidy at 7 pm last night. This is what Sissy's room looked like 12 hours later, and she slept for 9 hours of it.
This is the conglomeration of items that didn't fit in her space that I now have to find a place for.
I think I've mentioned Aspie Boy is good at puzzles? He did this much of the US puzzle in the 20 minutes I checked my email. This is a tough puzzle for ME to do! I think we can officially say he's better at it than me. He said, "mom. you have to be smart to do this puzzle."
"I AM smart."
"yeah. but smart, mom. you know. like, SMART."
I looked at him with an eyebrow raised. He conceded. "ok. you're smart. but this puzzle is for smart people only. and I can do it. because I'm smart. Can you help me find New Mexico?"
BTW, he's feeling better but school rules: you have to be vomit and diarrhea free for 24 hours before returning.
This is the conglomeration of items that didn't fit in her space that I now have to find a place for.
I think I've mentioned Aspie Boy is good at puzzles? He did this much of the US puzzle in the 20 minutes I checked my email. This is a tough puzzle for ME to do! I think we can officially say he's better at it than me. He said, "mom. you have to be smart to do this puzzle."
"I AM smart."
"yeah. but smart, mom. you know. like, SMART."
I looked at him with an eyebrow raised. He conceded. "ok. you're smart. but this puzzle is for smart people only. and I can do it. because I'm smart. Can you help me find New Mexico?"
BTW, he's feeling better but school rules: you have to be vomit and diarrhea free for 24 hours before returning.
Sunday, March 7, 2010
day 2
I think she's officially asleep. This living room/bedroom arrangement is challenging. It means that once Sissy is asleep, the living room is closed. no TV, no mom/dad time, lights out, the house is dark. Pbft. We are toying with the idea of making it more permanent by building a false wall so our living room will still be usable past 8 pm. Right now I'm sitting at the kitchen table which is murderous because my back hasn't recovered. I need my recliner. and the only other room in the house I can go to is the bedroom. 1200 sq ft is all we've got to work with. I might be putting a tent in the backyard ... or an old camper? nice.
Another very long day. Church first and I had Sissy stay with me in Sunday School. I may not be able to have a say about where she goes for school but I sure as heck can say that she doesn't need to be in a sunday school classroom with a volunteer teacher that isn't trained to deal with psychiatric kids, particularly one that hasn't been home for a 24 hours yet.
After sunday school, we met up with HER. ugh. This is a nice woman. She means no harm but she's fast. Needs ritalin, fast. And she's the intern school counselor at the kids' school so she thinks she knows my kids and their needs inside out. She starts spouting off all this stuff, blah, blah, blah and I was just sweetly nodding my head because I didn't want to be rude but darn, she drives me batty. and holy crap, she doesn't know anything. She might be learning how to be a school counselor but she isn't parenting kids with special needs. and she's certainly not parenting mine and furthermore ... I better stop. *holds tongue* She really is a nice woman and she really is trying very hard to be helpful and supportive so i just need to leave it at that.
The IFI team came again, met us at the door 10 minutes after church. They did some role playing therapy to navigate tomorrow's potential trouble spots with peers asking Sissy where she's been. I'm so nervous about her being in the main stream classroom. She is exceedingly off "norm" for average fourth graders. Whatever. Rules are rules. I keep telling myself, if THEY make the rules for Sissy despite what I say and she sinks, it's not my fault. I can't buck the machine. It's bigger than me. And all they'll say is "you're not the first momma with a child like this." (see also annoying school counselors that think they know my kids and what their needs are inside out) i may not be the first momma to walk down this block, but I AM walking down this block so that has to count for something. It doesn't of course, but it should. Now if I got a PhD in this stuff ... nah, they'd still hold their hands up and say, "mommas don't know jack"
[aside: my therapist and I talked about this conundrum this week. why do professionals, even those that are still training, think that mommas don't know their babies' needs? We went back and forth and settled on the notion that 30 - 40 years ago, so little was understood about mental health issues that clinicians were the only ones that knew ANYTHING. Not only that, they were learning a wealth of information rather quickly and being called upon to educate everyone else. It seems the stigma that clinicians are the only ones in the know hasn't been erased with the same fervor as parents have been interested in therapeutically parenting to keep their children out of institutions. well, it's a supposition at best, but it does give me something to chew on when I get my panties in a bunch about it. and my panties are bunching up.]
After the IFI team left, we went to the school playground. I needed to walk, I knew the kids needed exercise [1] and I had to clear my head. Too much, too fast. ugh, ugh ugh. Momma needed to employ a coping skill. I chose walking. Sissy faked a twisted ankle and tried to boss Wonder Girl around. Wonder Girl wasn't having any of it and opted to put on my sunglasses as her "deflector shield protection" from Sissy's "alien deflector shield" that disintegrated anything that came near. I didn't miss the very clear analogy - wonder girl using an item of mine to protect her from Sissy's imagined game of destruction? yeah. can't miss that one.
Then we came home to the chore I'd been procrastinating. The stuff. OMG, the stuff. When I picked Sissy up yesterday, the staff had literally thrown all of her things into two enormous trash bags. Trash, dirty laundry, broken toys, school papers, all of it shoved into bags that were unceremoniously heaped into my van. I cringed. Her space is limited. VERY limited. It took us 4 hours to weed through it all. Sissy's mind is so scattered. Redirecting, rephrasing, cutting off the lies and the fake illnesses at every turn, fending off the manipulations which came in rapid fire succession, it was exhausting. I'm not so sure she's on enough of one of her meds because her brain just got faster and faster and more and more scattered. We stopped in the middle for food (thank you church food pantry for fixing our supper this evening!) Sissy has a very limited number of items for two reasons: 1)limited space and 2)limited brain ability to keep track of stuff.
The Dad and Aspie Boy have been violently ill too boot so it's been a difficult day. It's all been on me because The Dad is incapacitated and has to rest because I absolutely I can't do the ladder work that is required for tomorrow's job. Otherwise, I'd just let the two of them fend for themselves in their misery and I would work. At this point, being on a job washing windows would be a welcome respite.
As far as behaviors go for today, Sissy's not been impossible. Although there were about 10 times when she had to show me up in conversation and we had to redirect her. Right now, it's not that she can't be managed, it's that she demands so much, there is no energy left to manage anyone or anything else. She's exhausting. She's 24/7. Nonstop, demand, demand, demand. She gives nothing back. She drains the very life from me. And then she lies and manipulates and has fake illnesses and talks nonstop and if I'm not paying attention SHOUTS her nonstop chatter and she has to one up me over and over and over and over. It's not been 48 hours and I already want to cry. At this point, I'd welcome her screaming fits because then I'd have a reason to call the IFI team.
At one point I said to her, "I have other family members that need me." This when Aspie Boy was puking his little brains out and she was asking for ice cream, about 15x, loudly. To be fair, I said she could have some after she finished her supper but that was 10 minutes before Aspie Boy got ill and seriously? She couldn't think to herself, my brother is ill, my mom is taking care of him, i can go without icecream? The school keeps telling me how friggin' smart she is but she can't figure out THAT? For crying out loud, Wonder Girl was shouting back at her, "SISSY! Aspie Boy is SICK! GEEZ!" Which resulted in Sissy pouting because Wonder Girl corrected her!
I'm not cut out for this. It's not chinese water torture. It's a battering ram against my head without ceasing. I can know all the friggin' therapeutic parenting tools in the world but none of them help me address this swirling toilet bowl of doom energy draining effect! I'm not kidding, I would take 10 more spectral kids over this. Aspie boy is a cake walk compared to Sissy. One on one, if there is no one else that needs me, she's moderately manageable. But throw the whole lot of 'em together and it falls apart. And guess who takes the biggest hit? Wonder Girl. Every time. Gosh darn it, it makes me so mad! And I'm friggin' exhausted and my back is killing me and i can't even sit in my friggin' recliner to get some relief because Sissy is friggin' sleeping in the living room because she's friggin' not safe and she doesn't return ANY emotional energy in the parent/child relationship and HOW ARE THE POWERS-THAT-BE MISSING THAT THIS DOES.NOT.WORK?!?!
30-40 years ago when those clinicians were learning all of this wonderful stuff about mental health, their patients and their patients' families were living in the institutions together getting 24/7 help. I want the best of both worlds. I want to be given the credit for knowing what the clinicians know so my family doesn't have to be in an institution but I also want the 24/7 help from the clinicians that know what they're doing but aren't stressed because it's not their child and they get paid to work 12 hour shifts.
maybe I just want to get paid to work a 12 hour shift.
[1] Sissy's resperidol causes weight gain. She's added 2 pounds since she was gone but only grew 1/4 inch so those 2 pounds are obvious. She can't wear many of her clothes. At the RTC, since it was set up like a camp, there was a lot of walking from one building to the next, probably 1.5 miles worth every day. So Sissy gained 2 pounds with an estimated 10 miles of physical exercise weekly. Yikes. That means exercise must be an immediate part of her therapy plan at home or she'll blow up. Switching the meds is out of the question. Without the anti-psychotic, she can't function. Forget RTC. She'd be in a state facility for life.
Another very long day. Church first and I had Sissy stay with me in Sunday School. I may not be able to have a say about where she goes for school but I sure as heck can say that she doesn't need to be in a sunday school classroom with a volunteer teacher that isn't trained to deal with psychiatric kids, particularly one that hasn't been home for a 24 hours yet.
After sunday school, we met up with HER. ugh. This is a nice woman. She means no harm but she's fast. Needs ritalin, fast. And she's the intern school counselor at the kids' school so she thinks she knows my kids and their needs inside out. She starts spouting off all this stuff, blah, blah, blah and I was just sweetly nodding my head because I didn't want to be rude but darn, she drives me batty. and holy crap, she doesn't know anything. She might be learning how to be a school counselor but she isn't parenting kids with special needs. and she's certainly not parenting mine and furthermore ... I better stop. *holds tongue* She really is a nice woman and she really is trying very hard to be helpful and supportive so i just need to leave it at that.
The IFI team came again, met us at the door 10 minutes after church. They did some role playing therapy to navigate tomorrow's potential trouble spots with peers asking Sissy where she's been. I'm so nervous about her being in the main stream classroom. She is exceedingly off "norm" for average fourth graders. Whatever. Rules are rules. I keep telling myself, if THEY make the rules for Sissy despite what I say and she sinks, it's not my fault. I can't buck the machine. It's bigger than me. And all they'll say is "you're not the first momma with a child like this." (see also annoying school counselors that think they know my kids and what their needs are inside out) i may not be the first momma to walk down this block, but I AM walking down this block so that has to count for something. It doesn't of course, but it should. Now if I got a PhD in this stuff ... nah, they'd still hold their hands up and say, "mommas don't know jack"
[aside: my therapist and I talked about this conundrum this week. why do professionals, even those that are still training, think that mommas don't know their babies' needs? We went back and forth and settled on the notion that 30 - 40 years ago, so little was understood about mental health issues that clinicians were the only ones that knew ANYTHING. Not only that, they were learning a wealth of information rather quickly and being called upon to educate everyone else. It seems the stigma that clinicians are the only ones in the know hasn't been erased with the same fervor as parents have been interested in therapeutically parenting to keep their children out of institutions. well, it's a supposition at best, but it does give me something to chew on when I get my panties in a bunch about it. and my panties are bunching up.]
After the IFI team left, we went to the school playground. I needed to walk, I knew the kids needed exercise [1] and I had to clear my head. Too much, too fast. ugh, ugh ugh. Momma needed to employ a coping skill. I chose walking. Sissy faked a twisted ankle and tried to boss Wonder Girl around. Wonder Girl wasn't having any of it and opted to put on my sunglasses as her "deflector shield protection" from Sissy's "alien deflector shield" that disintegrated anything that came near. I didn't miss the very clear analogy - wonder girl using an item of mine to protect her from Sissy's imagined game of destruction? yeah. can't miss that one.
Then we came home to the chore I'd been procrastinating. The stuff. OMG, the stuff. When I picked Sissy up yesterday, the staff had literally thrown all of her things into two enormous trash bags. Trash, dirty laundry, broken toys, school papers, all of it shoved into bags that were unceremoniously heaped into my van. I cringed. Her space is limited. VERY limited. It took us 4 hours to weed through it all. Sissy's mind is so scattered. Redirecting, rephrasing, cutting off the lies and the fake illnesses at every turn, fending off the manipulations which came in rapid fire succession, it was exhausting. I'm not so sure she's on enough of one of her meds because her brain just got faster and faster and more and more scattered. We stopped in the middle for food (thank you church food pantry for fixing our supper this evening!) Sissy has a very limited number of items for two reasons: 1)limited space and 2)limited brain ability to keep track of stuff.
The Dad and Aspie Boy have been violently ill too boot so it's been a difficult day. It's all been on me because The Dad is incapacitated and has to rest because I absolutely I can't do the ladder work that is required for tomorrow's job. Otherwise, I'd just let the two of them fend for themselves in their misery and I would work. At this point, being on a job washing windows would be a welcome respite.
As far as behaviors go for today, Sissy's not been impossible. Although there were about 10 times when she had to show me up in conversation and we had to redirect her. Right now, it's not that she can't be managed, it's that she demands so much, there is no energy left to manage anyone or anything else. She's exhausting. She's 24/7. Nonstop, demand, demand, demand. She gives nothing back. She drains the very life from me. And then she lies and manipulates and has fake illnesses and talks nonstop and if I'm not paying attention SHOUTS her nonstop chatter and she has to one up me over and over and over and over. It's not been 48 hours and I already want to cry. At this point, I'd welcome her screaming fits because then I'd have a reason to call the IFI team.
At one point I said to her, "I have other family members that need me." This when Aspie Boy was puking his little brains out and she was asking for ice cream, about 15x, loudly. To be fair, I said she could have some after she finished her supper but that was 10 minutes before Aspie Boy got ill and seriously? She couldn't think to herself, my brother is ill, my mom is taking care of him, i can go without icecream? The school keeps telling me how friggin' smart she is but she can't figure out THAT? For crying out loud, Wonder Girl was shouting back at her, "SISSY! Aspie Boy is SICK! GEEZ!" Which resulted in Sissy pouting because Wonder Girl corrected her!
I'm not cut out for this. It's not chinese water torture. It's a battering ram against my head without ceasing. I can know all the friggin' therapeutic parenting tools in the world but none of them help me address this swirling toilet bowl of doom energy draining effect! I'm not kidding, I would take 10 more spectral kids over this. Aspie boy is a cake walk compared to Sissy. One on one, if there is no one else that needs me, she's moderately manageable. But throw the whole lot of 'em together and it falls apart. And guess who takes the biggest hit? Wonder Girl. Every time. Gosh darn it, it makes me so mad! And I'm friggin' exhausted and my back is killing me and i can't even sit in my friggin' recliner to get some relief because Sissy is friggin' sleeping in the living room because she's friggin' not safe and she doesn't return ANY emotional energy in the parent/child relationship and HOW ARE THE POWERS-THAT-BE MISSING THAT THIS DOES.NOT.WORK?!?!
30-40 years ago when those clinicians were learning all of this wonderful stuff about mental health, their patients and their patients' families were living in the institutions together getting 24/7 help. I want the best of both worlds. I want to be given the credit for knowing what the clinicians know so my family doesn't have to be in an institution but I also want the 24/7 help from the clinicians that know what they're doing but aren't stressed because it's not their child and they get paid to work 12 hour shifts.
maybe I just want to get paid to work a 12 hour shift.
[1] Sissy's resperidol causes weight gain. She's added 2 pounds since she was gone but only grew 1/4 inch so those 2 pounds are obvious. She can't wear many of her clothes. At the RTC, since it was set up like a camp, there was a lot of walking from one building to the next, probably 1.5 miles worth every day. So Sissy gained 2 pounds with an estimated 10 miles of physical exercise weekly. Yikes. That means exercise must be an immediate part of her therapy plan at home or she'll blow up. Switching the meds is out of the question. Without the anti-psychotic, she can't function. Forget RTC. She'd be in a state facility for life.
Saturday, March 6, 2010
why am I not sleeping?
LONG day.
Sissy has only mildly shown her RADical behaviors but boy howdy, she was not pleased to be greeted by an IFI team member not 2 hours after we got home! But I gotta give her props, she didn't hide the anger, she just let it hang out. That's progress, right? I mean, as opposed to her playing the cute little doll that is happy go-lucky and acts like she doesn't understand what's wrong with her seething parents?
PH (personal hygiene) this evening went mildly well with a few reminders that I was ever vigilant and wouldn't be playing her game. but oh, she tried.
I think in total, there were 6 looks of death, four trumped up crying jags, two attempts at manipulation and 10 deliberate "i'm actively ignoring you" moments. On day one. well, 1/2 a day because we didn't get home until after 2 and they were all in bed by 8. What's your bets for full-on rage? By next Saturday?
On Thursday my therapist asked me to be prepared that Sissy might actually do well. She said, "what will you say if Sissy DOESN'T show the behaviors you're anticipating?"
I replied, "then you can call me a monkey's uncle."
I'm not scratching my butt and hanging from trees yet but I'll wait until Thursday to let her know which way the jury votes.
My therapist also asked if I would be doing anything for "welcome home" kind of celebrations for today. I hadn't really thought of it. Not necessarily because I wasn't ready for her to be home but mostly because my brain just doesn't go there. Social conventions like that escape me. So my therapist recommended I make an attempt. Choosing to obey her, I asked Sissy what special dinner she wanted when she got home, some favorite food she hadn't eaten the whole time while at the RTC. I was REALLY hoping she wouldn't say something like lasagna and pumpkin pie because gosh. Cooking that after 6 hours on the road? I don't think so. Thankfully, Sissy wasn't thinking make mom miserable with that opportunity. We had chicken nuggets, mac n cheese and vanilla ice cream for our "welcome home" dinner.
Sissy and I also had a mom/daughter lunch at a cracker barrel about halfway home this afternoon. I was in excruciating pain (chronic back pain) and my eyes were dizzy after 4.5 hours of driving. Sissy wanted McDonald's but I needed a sit-down/waitress meal. Someone remind me next time that taking RADishes out to restaurants is riddled with potential for embarrassment. I should have just toughed it out at McDonald's. At one point in our meal, I glanced up to survey some of the other diners hoping they weren't too annoyed with Sissy's loud talking and smacking lips and oh... the mess on her face ... and I saw a family with a challenged adult daughter. Their daughter was sitting so sweetly , not talking, not being a pig, not looking like she just escaped a psychiatric facility after 100 days and I thought sure, her impairment is visually obvious and at first, startling to see, but I think i'd take parenting THAT challenge over this one! But I haven't walked a mile in those parents' shoes so maybe I'd say otherwise. Today? Not so much. Especially when I suggested she wipe the strawberry jam off her cheeks (really, she looked like she dove her face into a pig trough) and she wiped it and shouted loud enough for her words to echo, "Hey! It looks like BLOOD!" *sigh*
good god almighty, this is going to be one long miserable week that ends in me buying a fresh bottle of brandy, isn't it?
ANYWAY ... *rolls eyes at self*
I finished my behavior plan and some of you requested seeing it. It's in a microsoft docx format and isn't copy/pasting well on the blog so if you want to see it, email me direct (see my profile page) and I'll be glad to attach a file for you. If you have a microsoft version older than 2007, you will need to do a patch so you can open the docx file. i can send you that linkeroo too.
In other news:
Wonder Girl is expressing her concerns, anxieties and fears about Sissy's return. She's had tough behaviors at school this week and has acted out her thoughts and aggressions by role playing with her dolls. (she bound up one doll super tight like a mummy because the dolly reportedly left her room at night without permission and Wonder Girl wanted to make sure she couldn't escape again) Seeing that doll last night, I opted to break our rule and let her sleep with me. She held my hand the whole night. Every time she turned and was no longer making physical contact, she woke herself up and reached for my hand again. It makes me cry even now, thinking about it. She's currently sleeping on our bedroom floor. The IFI team said this evening that they will make a plan for Wonder Girl too. It just makes me so mad, you know? She's my only child without a diagnosable issue. I don't want the trauma Sissy causes to give Wonder Girl an issue!
IFI team member Ms M is such a doll, I really like her. And guess what? I asked her if she would like a link to Nancy Thomas' website, especially the therapists page and Ms M was all over it. Sweet! I'm not really interested in educating the IFI team about RAD and my therapist has specifically recommended that I not take on that responsibility, but I figured I could at least offer an olive branch in the form of a URL, right? I'm so glad Ms M reached for it!
OK, peace out. Sissy is sleeping for now - all hail prescription drugs!
Sissy has only mildly shown her RADical behaviors but boy howdy, she was not pleased to be greeted by an IFI team member not 2 hours after we got home! But I gotta give her props, she didn't hide the anger, she just let it hang out. That's progress, right? I mean, as opposed to her playing the cute little doll that is happy go-lucky and acts like she doesn't understand what's wrong with her seething parents?
PH (personal hygiene) this evening went mildly well with a few reminders that I was ever vigilant and wouldn't be playing her game. but oh, she tried.
I think in total, there were 6 looks of death, four trumped up crying jags, two attempts at manipulation and 10 deliberate "i'm actively ignoring you" moments. On day one. well, 1/2 a day because we didn't get home until after 2 and they were all in bed by 8. What's your bets for full-on rage? By next Saturday?
On Thursday my therapist asked me to be prepared that Sissy might actually do well. She said, "what will you say if Sissy DOESN'T show the behaviors you're anticipating?"
I replied, "then you can call me a monkey's uncle."
I'm not scratching my butt and hanging from trees yet but I'll wait until Thursday to let her know which way the jury votes.
My therapist also asked if I would be doing anything for "welcome home" kind of celebrations for today. I hadn't really thought of it. Not necessarily because I wasn't ready for her to be home but mostly because my brain just doesn't go there. Social conventions like that escape me. So my therapist recommended I make an attempt. Choosing to obey her, I asked Sissy what special dinner she wanted when she got home, some favorite food she hadn't eaten the whole time while at the RTC. I was REALLY hoping she wouldn't say something like lasagna and pumpkin pie because gosh. Cooking that after 6 hours on the road? I don't think so. Thankfully, Sissy wasn't thinking make mom miserable with that opportunity. We had chicken nuggets, mac n cheese and vanilla ice cream for our "welcome home" dinner.
Sissy and I also had a mom/daughter lunch at a cracker barrel about halfway home this afternoon. I was in excruciating pain (chronic back pain) and my eyes were dizzy after 4.5 hours of driving. Sissy wanted McDonald's but I needed a sit-down/waitress meal. Someone remind me next time that taking RADishes out to restaurants is riddled with potential for embarrassment. I should have just toughed it out at McDonald's. At one point in our meal, I glanced up to survey some of the other diners hoping they weren't too annoyed with Sissy's loud talking and smacking lips and oh... the mess on her face ... and I saw a family with a challenged adult daughter. Their daughter was sitting so sweetly , not talking, not being a pig, not looking like she just escaped a psychiatric facility after 100 days and I thought sure, her impairment is visually obvious and at first, startling to see, but I think i'd take parenting THAT challenge over this one! But I haven't walked a mile in those parents' shoes so maybe I'd say otherwise. Today? Not so much. Especially when I suggested she wipe the strawberry jam off her cheeks (really, she looked like she dove her face into a pig trough) and she wiped it and shouted loud enough for her words to echo, "Hey! It looks like BLOOD!" *sigh*
good god almighty, this is going to be one long miserable week that ends in me buying a fresh bottle of brandy, isn't it?
ANYWAY ... *rolls eyes at self*
I finished my behavior plan and some of you requested seeing it. It's in a microsoft docx format and isn't copy/pasting well on the blog so if you want to see it, email me direct (see my profile page) and I'll be glad to attach a file for you. If you have a microsoft version older than 2007, you will need to do a patch so you can open the docx file. i can send you that linkeroo too.
In other news:
Wonder Girl is expressing her concerns, anxieties and fears about Sissy's return. She's had tough behaviors at school this week and has acted out her thoughts and aggressions by role playing with her dolls. (she bound up one doll super tight like a mummy because the dolly reportedly left her room at night without permission and Wonder Girl wanted to make sure she couldn't escape again) Seeing that doll last night, I opted to break our rule and let her sleep with me. She held my hand the whole night. Every time she turned and was no longer making physical contact, she woke herself up and reached for my hand again. It makes me cry even now, thinking about it. She's currently sleeping on our bedroom floor. The IFI team said this evening that they will make a plan for Wonder Girl too. It just makes me so mad, you know? She's my only child without a diagnosable issue. I don't want the trauma Sissy causes to give Wonder Girl an issue!
IFI team member Ms M is such a doll, I really like her. And guess what? I asked her if she would like a link to Nancy Thomas' website, especially the therapists page and Ms M was all over it. Sweet! I'm not really interested in educating the IFI team about RAD and my therapist has specifically recommended that I not take on that responsibility, but I figured I could at least offer an olive branch in the form of a URL, right? I'm so glad Ms M reached for it!
OK, peace out. Sissy is sleeping for now - all hail prescription drugs!
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