See, I read Nancy Thomas' stuff. I've watched her videos. I could probably substitute teach her workshops for her when she's sick. But there are a few things she says right from the start that I haven't been putting into practice in my daily life.
The number one thing she recommends to parents that are new to RAD parenting[1]:
sleep. 10-12 hours/day for two weeks prior to taking a new RAD child into your home.
That's what Nancy recommends. That's the one thing I haven't been doing. Because I'm sure, like me, all of my other wonderful RAD mommies out there are prone to burn the midnight oil long and hard and as often as possible. Seriously, God went wrong there with the 24 hour day thing. 36 hours would have been better. Right? RIGHT?!? (come on, just nod your head and agree with me so I dont' feel like an idiot.)
I just pretended that Nancy Thomas didn't say the 10 hour sleep thing. I purposedly put it out of my head because that's a lot of sleep. But lately I've been feeling it, I have been crashing and burning, sacking out at the drop of a hat, cutting some major logs with my snoring (you know that Logger reality show? they could put me to good use! lol) Last night I sat in the recliner at 9 pm and ... zonk. out cold. Woke up at 12, climbed into my bed still in my clothes and ... zonk until the alarm went off. Then I slammed the snooze for another 40 minutes. When i finally slogged out of bed like a 20 year old slug, i tallied it up. 10 hours. I slept 10 hours!!!
*beams at self*
So, OK. Sleep is good. I recommend it.
[1] Sissy was diagnosed RAD when she was 15 months old and we've had custody since she was 11 months old but we consider ourselves "new to RAD parenting" because until September, every other approach we took with her doctors, therapies and meds did NOT directly deal with her RADs.
Wednesday, January 27, 2010
Sunday, January 24, 2010
Questing
At our house, the TV is usually tuned to the Discovery Channel or SyFy, public television or History. I think it's all of those years as an educator, I just don't see the merit of programming that doesn't educate. Plus, for Aspie Boy, the scripted sitcoms don't hold a lot of value for him. So this afternoon we were watching a program about primordial dwarfism.
Aspie Boy was as riveted as I was. The documentary centralized on a particular family in New Zealand that had a 9 year old daughter with the disorder, the sole documented case in their country's population. The chronicled story line unfolds as the family connects with the American Little People Association and a handful of moderately knowledgeable physicians in the U.S. that could diagnose her daughter's condition and assess any other physical complications.
I was particularly intrigued by two things, Aspie Boy's continued interest in programs about persons with impairments and with the documentary's portrayal of the mother's unending quest for answers and resolution to her emotional distress about her daughter.
It's hard to gauge Aspie Boy's comprehension and apparent fascination with other inflicted persons. I watch him, his facial cues and the flickers of understanding or doubt that flash in his eyes as he watches these stories. Once he watched a documentary about the only living twin female autistic savants and he was captivated by their abilities and the similarities he recognized in himself. Today's documentary had him pacing and interrupting to ask me a lot of questions. I gathered that the child's physical issues alarmed him. He was very concerned about her life expectancy but was equally interested in comparing her mental abilities to his own. He kept justifying himself and trying to compare what his experiences are with the experiences of the child in the program. I took the time during the commercials to ask him questions. Did he was the same or different? What did he think of her impairments as they compared to his challenges? He wasn't really able to articulate his thoughts but I know he was thinking about it because as soon as the program was over, he wanted it to still be on. I opted to turn off the television instead because he is inclined toward obsessions. At this moment, he is outside, swinging very hard on the swingset. That's his way of saying I'm overwhelmed, I need to make myself feel better.
I had similar feelings but not about the child's impairment, rather I connected to the mother. She just kept searching for answers for her child, pinned emotionally by the isolation of being the only family in New Zealand afflicted by primordial dwarfism. They went to the Little People Convention and she was overwhelmed with emotion when she saw other families with children with the disorder but was doubly impacted by the harsh realities and stark truths of how it afflicts the patient and their loved ones. The lack of medical knowledge about the disorder makes it very challenging. The parents of the children are admittedly the best diagnostician's. Several medical professionals explained the medical field's ignorance because they held the opinion that the advances in neonatal care in the last 20 years are the sole reason there are surviving children with the disorder. Previously, the physical challenges were so severe the infants rarely survived. The mother's emotional progression challenged me because I hope that one day we will have a connection for Aspie Boy's issues..
Aspie Boy has a genetic root to his spectral symptoms. His genetics team has been trying for 5 years to diagnose him. I believe he has F-G syndrome, a sex-linked chromosomal deficiency that was first diagnosed in the late 70s. Diagnosis is hard to pin down and currently only one facility in the country is working on blood tests to isolate the gene. That facility is 45 minutes from here. They did their initial test with negative results but have also said that the initial test is often a false negative, that the more specific tests that they are currently developing will rule out those false results. I've attempted to convince Aspie Boy's geneticist of this with no luck. Our most recent lab work was flown to Spokane, WA to do a 4000 point microarray. I'm hoping for results, something, anything at all. It would be so nice to finally have an answer, to be like the mother in this documentary that finally connected with people and families that understood her daily challenges with her child.
If we don't get results, the geneticist will diagnose Aspie Boy as "undefinable genetic disorder having exhausted current medical science" or something along those lines. But it may not be enough to get us assistance. It most certainly won't be enough for me to genetically counsel his sisters toward the chance they'll carry the gene or have children with the disorder. It also means I'll remain the mother that continues to quest on behalf of her son, searching for answers, looking for other families to connect with, attempting to put a face and a sense of hope to my child's impairments. For now, I have the autism community and that will have to be enough.
Aspie Boy was as riveted as I was. The documentary centralized on a particular family in New Zealand that had a 9 year old daughter with the disorder, the sole documented case in their country's population. The chronicled story line unfolds as the family connects with the American Little People Association and a handful of moderately knowledgeable physicians in the U.S. that could diagnose her daughter's condition and assess any other physical complications.
I was particularly intrigued by two things, Aspie Boy's continued interest in programs about persons with impairments and with the documentary's portrayal of the mother's unending quest for answers and resolution to her emotional distress about her daughter.
It's hard to gauge Aspie Boy's comprehension and apparent fascination with other inflicted persons. I watch him, his facial cues and the flickers of understanding or doubt that flash in his eyes as he watches these stories. Once he watched a documentary about the only living twin female autistic savants and he was captivated by their abilities and the similarities he recognized in himself. Today's documentary had him pacing and interrupting to ask me a lot of questions. I gathered that the child's physical issues alarmed him. He was very concerned about her life expectancy but was equally interested in comparing her mental abilities to his own. He kept justifying himself and trying to compare what his experiences are with the experiences of the child in the program. I took the time during the commercials to ask him questions. Did he was the same or different? What did he think of her impairments as they compared to his challenges? He wasn't really able to articulate his thoughts but I know he was thinking about it because as soon as the program was over, he wanted it to still be on. I opted to turn off the television instead because he is inclined toward obsessions. At this moment, he is outside, swinging very hard on the swingset. That's his way of saying I'm overwhelmed, I need to make myself feel better.
I had similar feelings but not about the child's impairment, rather I connected to the mother. She just kept searching for answers for her child, pinned emotionally by the isolation of being the only family in New Zealand afflicted by primordial dwarfism. They went to the Little People Convention and she was overwhelmed with emotion when she saw other families with children with the disorder but was doubly impacted by the harsh realities and stark truths of how it afflicts the patient and their loved ones. The lack of medical knowledge about the disorder makes it very challenging. The parents of the children are admittedly the best diagnostician's. Several medical professionals explained the medical field's ignorance because they held the opinion that the advances in neonatal care in the last 20 years are the sole reason there are surviving children with the disorder. Previously, the physical challenges were so severe the infants rarely survived. The mother's emotional progression challenged me because I hope that one day we will have a connection for Aspie Boy's issues..
Aspie Boy has a genetic root to his spectral symptoms. His genetics team has been trying for 5 years to diagnose him. I believe he has F-G syndrome, a sex-linked chromosomal deficiency that was first diagnosed in the late 70s. Diagnosis is hard to pin down and currently only one facility in the country is working on blood tests to isolate the gene. That facility is 45 minutes from here. They did their initial test with negative results but have also said that the initial test is often a false negative, that the more specific tests that they are currently developing will rule out those false results. I've attempted to convince Aspie Boy's geneticist of this with no luck. Our most recent lab work was flown to Spokane, WA to do a 4000 point microarray. I'm hoping for results, something, anything at all. It would be so nice to finally have an answer, to be like the mother in this documentary that finally connected with people and families that understood her daily challenges with her child.
If we don't get results, the geneticist will diagnose Aspie Boy as "undefinable genetic disorder having exhausted current medical science" or something along those lines. But it may not be enough to get us assistance. It most certainly won't be enough for me to genetically counsel his sisters toward the chance they'll carry the gene or have children with the disorder. It also means I'll remain the mother that continues to quest on behalf of her son, searching for answers, looking for other families to connect with, attempting to put a face and a sense of hope to my child's impairments. For now, I have the autism community and that will have to be enough.
Saturday, January 23, 2010
Surrounding myself with love
After the RTC visit yesterday, I connected with Finishing off my family at La Salsa's, one of the many Mexican restaurants one exit up from the RTC. They are one totally cool family! We parted ways with the idea of connecting again the next time I bring the whole family to the RTC, a plan I fully intend to make happen.
It was so refreshing to spend time with smiling faces after being at the RTC and seeing Sissy who is better on the med cocktail she's on currently but who is still a million miles from thinking about or connecting to anyone or anything other than herself. It's very difficult to look in her face and tell myself, remember, you LOVE this child. Find something to love about her if you can't make your heart feel it. It's also a long road trip home and since it was Friday, I knew I'd be stuck in Atlanta traffic so supper with tudusamom was also perfect timing to avoid rush hour.
20 miles up from my exit, I made a side trip to pick up my unofficially-in-my-heart adopted daughter for the weekend. "White Girl" (what her friends at school call her because she is one of three white students) is 18, a senior and extremely helpful with the kids. She's all smiles, cheer and energy. She cleans my house because she LIKES too (I know, weird, huh?)and she likes being here because it gets her out of the sticks and near civilization with working internet. On her cellie I'm "mom in augusta". That makes me smile. Alot. She's just a wonderful breath of fresh air and a ray of sunshine.
Thankfully, White Girl had the energy to get me through Walmart to get some essentials and to energize me enough to safely drive the last 26 miles home. When I walked in the door at 11, I brushed my teeth, used the toilet, put on my pj's and crashed in the bed. White Girl folded 6 loads of laundry. Did I mention I love her?
I had a lot on my mind from the RTC, including the fact that as the therapist escorted me to the office to sign out for the TL she throws out a doozie with no time to discuss it at length because she was off to the next therapy session. Apparently, she requested insurance approval for a 48 hour overnight TL. I believe my mouth dropped, literally. That would be 12 hours in the car in one weekend and an at-home visit. Sissy openly admitted not 10 minutes beforehand in the therapy session that she would still get very angry and frustrated with her brother and that her newly learned coping skills would be hard for her to use with him. We had discussed Wonder Girl's ongoing recovery process from all of the things Sissy did to her and that I will not be putting Sissy back in the bedroom with Wonder Girl. We talked about how hard it is for Aspie Boy to do ANYthing let alone be in a car for 12 hours in one weekend so Sissy could come home and be disruptive all over again. But we're supposed to do a weekend visit at home?!?! Uh... no. Just thinking of the logistics of getting Sissy back to the RTC and all of her screaming and crying about it on the 3 HOUR RETURN ROAD TRIP makes me ill let alone all of the other issues to contend with.
So today The Dad and I took our first solo outing since the first week in November this afternoon, childcare compliments of our "oldest". We went bowling and out to lunch, then browsing in a local gift store so I could drop Valentine's gift hints. The rules were simple: have fun and no talking about the kids. We accomplished both.
When we returned, White Girl had turned the house into a playground of forts using the table and chairs and every blanket available known to man. We played and giggled and had a good time. Then White Girl took it upon herself to cook supper and do the dishes (seriously, I want to squeeze the life out of her, i love her so much!!!!) I bathed the kids and did story time and it was wonderful. Wonder Girl read a story to me, grade level 1.2 and she's just in Kindergarten. I was giddy with pride.
The Dad tried to call Sissy because it was our night to call but the staff said our phone days had been changed. Uh? No one told us and I was just there yesterday. Whatever. It's not like talking to Sissy on the phone is a fruitful conversation. She probably didn't even remember it was our night to call. He's currently in his recliner watching the Hannah Montana movie ... by himself. He said he's enjoying it!ROFL
It's been hard to not think about all of the things that are stirring me up right now. It's been hard to stay in the moment and just love being loved and giving love. It's been hard to not want to cry or scream or punch or kick. But it's definitely easier to stay sane when you surround yourself with love.
White Girl
Wonder Girl
The Dad and Aspie Boy
[aside] I have an old digital camera (I don't really care to tell you how old because you'd laugh at me) so the date feature on the dern widget is defunct. The first two pictures were taken this evening and the last picture was taken two weeks ago.
It was so refreshing to spend time with smiling faces after being at the RTC and seeing Sissy who is better on the med cocktail she's on currently but who is still a million miles from thinking about or connecting to anyone or anything other than herself. It's very difficult to look in her face and tell myself, remember, you LOVE this child. Find something to love about her if you can't make your heart feel it. It's also a long road trip home and since it was Friday, I knew I'd be stuck in Atlanta traffic so supper with tudusamom was also perfect timing to avoid rush hour.
20 miles up from my exit, I made a side trip to pick up my unofficially-in-my-heart adopted daughter for the weekend. "White Girl" (what her friends at school call her because she is one of three white students) is 18, a senior and extremely helpful with the kids. She's all smiles, cheer and energy. She cleans my house because she LIKES too (I know, weird, huh?)and she likes being here because it gets her out of the sticks and near civilization with working internet. On her cellie I'm "mom in augusta". That makes me smile. Alot. She's just a wonderful breath of fresh air and a ray of sunshine.
Thankfully, White Girl had the energy to get me through Walmart to get some essentials and to energize me enough to safely drive the last 26 miles home. When I walked in the door at 11, I brushed my teeth, used the toilet, put on my pj's and crashed in the bed. White Girl folded 6 loads of laundry. Did I mention I love her?
I had a lot on my mind from the RTC, including the fact that as the therapist escorted me to the office to sign out for the TL she throws out a doozie with no time to discuss it at length because she was off to the next therapy session. Apparently, she requested insurance approval for a 48 hour overnight TL. I believe my mouth dropped, literally. That would be 12 hours in the car in one weekend and an at-home visit. Sissy openly admitted not 10 minutes beforehand in the therapy session that she would still get very angry and frustrated with her brother and that her newly learned coping skills would be hard for her to use with him. We had discussed Wonder Girl's ongoing recovery process from all of the things Sissy did to her and that I will not be putting Sissy back in the bedroom with Wonder Girl. We talked about how hard it is for Aspie Boy to do ANYthing let alone be in a car for 12 hours in one weekend so Sissy could come home and be disruptive all over again. But we're supposed to do a weekend visit at home?!?! Uh... no. Just thinking of the logistics of getting Sissy back to the RTC and all of her screaming and crying about it on the 3 HOUR RETURN ROAD TRIP makes me ill let alone all of the other issues to contend with.
So today The Dad and I took our first solo outing since the first week in November this afternoon, childcare compliments of our "oldest". We went bowling and out to lunch, then browsing in a local gift store so I could drop Valentine's gift hints. The rules were simple: have fun and no talking about the kids. We accomplished both.
When we returned, White Girl had turned the house into a playground of forts using the table and chairs and every blanket available known to man. We played and giggled and had a good time. Then White Girl took it upon herself to cook supper and do the dishes (seriously, I want to squeeze the life out of her, i love her so much!!!!) I bathed the kids and did story time and it was wonderful. Wonder Girl read a story to me, grade level 1.2 and she's just in Kindergarten. I was giddy with pride.
The Dad tried to call Sissy because it was our night to call but the staff said our phone days had been changed. Uh? No one told us and I was just there yesterday. Whatever. It's not like talking to Sissy on the phone is a fruitful conversation. She probably didn't even remember it was our night to call. He's currently in his recliner watching the Hannah Montana movie ... by himself. He said he's enjoying it!ROFL
It's been hard to not think about all of the things that are stirring me up right now. It's been hard to stay in the moment and just love being loved and giving love. It's been hard to not want to cry or scream or punch or kick. But it's definitely easier to stay sane when you surround yourself with love.
[aside] I have an old digital camera (I don't really care to tell you how old because you'd laugh at me) so the date feature on the dern widget is defunct. The first two pictures were taken this evening and the last picture was taken two weeks ago.
Thursday, January 21, 2010
I want to
I want to feel bad about Haiti. I want the images on the TV to have an emotional impact on me. I want to be in constant prayer for everyone there and all of the assistance crews that are flying in from around the globe. I want to emotionally connect to that trauma and not feel like a self-centered, self-absorbed idiot in my dry home with my clean clothes and my hot shower and my food in the pantry. I want to but I can't.
Nine years of Sissy's behaviors have made it impossible for me, at this point in my life, to connect to someone else's pain because I can't even connect to mine. Aspie Boy and Wonder Girl wanted to see some of their baby pictures the other day and as I was flipping through the endless photo books to find their pictures, I flipped through page after page of glowering images of Sissy. Not one smile. All of them were glowering images, a face filled with hate and disgust for the person taking the picture, me. Knowing what I know now, I wonder how I managed to endure so much of that daily hatred that morphed into daily agression, violence, anger, and loathing. I know it is because I wanted so desperately to love her and for her to love me back that I naively thought love could conquer it all.
But love doesn't fix RADs, not conventional love anyway. And I'm finding it very hard to find a way to parent Sissy when she returns that provides what she needs without destroying my heart and my love for her at the same time. I keep saying "Nothing is impossible with God, not even RADs" but I don't really believe it. I'm in the fake-it-til-you-make-it mode with that one.
I return to my original thought, I want to feel bad about Haiti but I'm living my own trauma in my own home, in my own life, every day. I'm sorting through the years of lies and manipulations, the relationships I've had, the way I've had to change to accommodate for her needs, the way I've altered my perception of what it means to be family. I've had to tell myself not to hate the families that have what I wanted when I raised my right hand and solemnly swore before a judge that I would do everything in my power to raise Sissy to the best of my ability. That ability which seems to shrink with each passing day. I've had to tell myself, literally pinch myself as I think it, that yes, Sissy CAN be healed of RADs, that there is hope, there is always hope as long as I reach for it but ... but it won't heal all of her other mental health issues, she will always be impaired. But if she could love me? would that be enough?
And I think of Aspie Boy who is so impaired and I never think of his impairments, I only think of the son that I love. The son that loves me back, who literally tackles me when he hugs and kisses me (on my eyes!) and I know it is easy to love him because he reciprocates. To another woman, my son might be challenged beyond her abilities but to me his abilities pale in comparison to the amount of love he gives me just because I breathe. This same amount of love that Sissy steals from me and NEVER replaces, it just continues to be a gigantic hole of nothingness and then she showers me with manipulation, hatred, lies and defiance besides, like kicking me when I'm down.
And all of this with Wonder Girl who has never once said, "But Mommy, it's not fair that I only have siblings with impairments, why can't I have a sibling that is 'normal'?" which would be a fair question.
So no, I can't hurt for Haiti. Intellectually, yes. Empathetically? No. I just don't have an ounce left in me for empathy for someone else's pain. And that makes me want to cry too. How did I get this far and is there a possible return? Nothing is impossible for God, not even my broken heart.
Tomorrow I travel to the RTC. I haven't seen Sissy in three weeks because of The Dad's knee and my subsequent need to do triple duty to pick up the slack for him not working. January's bills aren't paid and I'm going to lose a day of wages AND spend gas money to travel to see a child that doesn't love me. Hooray. Nothing is impossible with God, not even January's bills and a road trip to see a child that doesn't love me.
And just now The Dad told me it's going to be our busiest spring season and we'll be working Saturdays in March and Sissy's insurance gives her the boot in March whether she's better or not and how are we supposed to reintegrate her into our home in the middle of our busiest work season, the money of which we'll need to catch up on our January bills? Nothing is impossible for God, not even Sissy's return in the middle of our busiest work season.
I'm just going to keep faking it until I make it, nothing is impossible with God. Not Haiti, not traumatized orphans from the most devastating global earthquake in history, not all of the mommys and daddys out there that will adopt all of those children and find out they got 100x more than they bargained for, not Sissy, not mental health issues, not RADs, not January's bills, not my broken heart, not a busy work season, not Aspie Boy's growing list of impairments, not Wonder Girl's anger that she doesnt' have a normal sibling to play with, nothing. NOTHING is impossible with God.
Nine years of Sissy's behaviors have made it impossible for me, at this point in my life, to connect to someone else's pain because I can't even connect to mine. Aspie Boy and Wonder Girl wanted to see some of their baby pictures the other day and as I was flipping through the endless photo books to find their pictures, I flipped through page after page of glowering images of Sissy. Not one smile. All of them were glowering images, a face filled with hate and disgust for the person taking the picture, me. Knowing what I know now, I wonder how I managed to endure so much of that daily hatred that morphed into daily agression, violence, anger, and loathing. I know it is because I wanted so desperately to love her and for her to love me back that I naively thought love could conquer it all.
But love doesn't fix RADs, not conventional love anyway. And I'm finding it very hard to find a way to parent Sissy when she returns that provides what she needs without destroying my heart and my love for her at the same time. I keep saying "Nothing is impossible with God, not even RADs" but I don't really believe it. I'm in the fake-it-til-you-make-it mode with that one.
I return to my original thought, I want to feel bad about Haiti but I'm living my own trauma in my own home, in my own life, every day. I'm sorting through the years of lies and manipulations, the relationships I've had, the way I've had to change to accommodate for her needs, the way I've altered my perception of what it means to be family. I've had to tell myself not to hate the families that have what I wanted when I raised my right hand and solemnly swore before a judge that I would do everything in my power to raise Sissy to the best of my ability. That ability which seems to shrink with each passing day. I've had to tell myself, literally pinch myself as I think it, that yes, Sissy CAN be healed of RADs, that there is hope, there is always hope as long as I reach for it but ... but it won't heal all of her other mental health issues, she will always be impaired. But if she could love me? would that be enough?
And I think of Aspie Boy who is so impaired and I never think of his impairments, I only think of the son that I love. The son that loves me back, who literally tackles me when he hugs and kisses me (on my eyes!) and I know it is easy to love him because he reciprocates. To another woman, my son might be challenged beyond her abilities but to me his abilities pale in comparison to the amount of love he gives me just because I breathe. This same amount of love that Sissy steals from me and NEVER replaces, it just continues to be a gigantic hole of nothingness and then she showers me with manipulation, hatred, lies and defiance besides, like kicking me when I'm down.
And all of this with Wonder Girl who has never once said, "But Mommy, it's not fair that I only have siblings with impairments, why can't I have a sibling that is 'normal'?" which would be a fair question.
So no, I can't hurt for Haiti. Intellectually, yes. Empathetically? No. I just don't have an ounce left in me for empathy for someone else's pain. And that makes me want to cry too. How did I get this far and is there a possible return? Nothing is impossible for God, not even my broken heart.
Tomorrow I travel to the RTC. I haven't seen Sissy in three weeks because of The Dad's knee and my subsequent need to do triple duty to pick up the slack for him not working. January's bills aren't paid and I'm going to lose a day of wages AND spend gas money to travel to see a child that doesn't love me. Hooray. Nothing is impossible with God, not even January's bills and a road trip to see a child that doesn't love me.
And just now The Dad told me it's going to be our busiest spring season and we'll be working Saturdays in March and Sissy's insurance gives her the boot in March whether she's better or not and how are we supposed to reintegrate her into our home in the middle of our busiest work season, the money of which we'll need to catch up on our January bills? Nothing is impossible for God, not even Sissy's return in the middle of our busiest work season.
I'm just going to keep faking it until I make it, nothing is impossible with God. Not Haiti, not traumatized orphans from the most devastating global earthquake in history, not all of the mommys and daddys out there that will adopt all of those children and find out they got 100x more than they bargained for, not Sissy, not mental health issues, not RADs, not January's bills, not my broken heart, not a busy work season, not Aspie Boy's growing list of impairments, not Wonder Girl's anger that she doesnt' have a normal sibling to play with, nothing. NOTHING is impossible with God.
Sunday, January 17, 2010
Quilting makes the blues go away
My integritysinger blog shows pictures of my quilting efforts this weekend. When the going gets tough? the tough get quilting.
Fellow quilters, if you like the fabric, I still have about 1/4 yard of uncut which I'll gladly mail to you or you can have my 5x5 squares if you want to swap and send me something back!
fabric exchange = fun!
Fellow quilters, if you like the fabric, I still have about 1/4 yard of uncut which I'll gladly mail to you or you can have my 5x5 squares if you want to swap and send me something back!
fabric exchange = fun!
Friday, January 15, 2010
breathing
Diana from Gold to Refine gave me an Rx: relaxing bath and some RxR. I took her excellent advice. Feeling better today. Thanks Diana!
The psychiatrist from the RTC called today. Hip Hip Hooray! This is only the second time I've talked to him since Sissy's placement. He filled us in on their treatment for her which included her EEG and EKG results, her liver enzyme and cholesterol lab work and their med plan. He's adding lamictal to her list. No surprise there. I anticpated that. So she's on an anti-psychotic, an anti-depressant and an anti-convulsant. They're going to start neuro feedback as well. I'm glad, i was hoping they would. Her EEG and EKG did not turn up anything unusual and he believes the diffuse spike from her EEG in September when she was with us is due to the Wellbutrin she was on. Her liver enzymes and cholesterol are fine. Her weight gain is being monitored but I suspect the lamictal will counter act the respirdol when it comes to weight issues. Apparently, she's been crying alot but of course we've not known about any of that because she manipulates and lies when she talks to us and has painted a picture that she is doing just fine. And since the staff isn't calling us to give us a heads up on her progress, there would be no way for us to know that she's been lying. Since he didn't mention the EEG showing any developmental delay, I can only assume they have dropped the issue of diagnosing her on the spectrum (but I didn't ask flat out if that was the case so it's anybody's guess.)
Aspie Boy slept last night on the trazadone but he is CRAZY FAST. I know, I know. It takes 3 - 6 weeks to know how he will respond. But CRAZY FAST! makes me nervous.
I know that the meds are there to help people manage their mental health, that's what they're designed for. What I don't know is I will be adequate to manage these meds for the children. Sissy will eventually come home and still be on all of these meds. Aspie Boy's medicinal future is up in the air. Getting into anti convulsants and anti psychotics makes me nervous. I'm feeling very inadequately equipped and I can take the time to make myself more adequately equipped but always at the risk of my sanity and wellbeing. Hello? I'm still just Jennie. You know, the girl that grew into a woman that wanted to be a mom?
Pharmacologist/Psychiatrist/AT/OT/Psychologist? Not so much.
This is so much more than just reading some RAD books and helping a child nurture. This is so much more than taking Aspie Boy to an OT for weekly appointments. I'm not prepared for this emotionally, mentally, physically, financially. It's killing my social and spiritual life. And I live in an environment that is pisspoor for mental health support. I'm really not sure what to do or how to get to a point of feeling safe to parent such demanding needs and still feel like an adult woman that has her own life.
For those of you with double and triple the number of children I have (3), how on earth do you manage it? Where do you get the time, the energy, the financial resources, the support, the help, the physical and mental strength, the social and spiritual interaction required to do such a demanding job? We're sinking in all seven areas of our wellness wheel and I don't know how to make it work. Just knowing that some of you are parenting that number of special needs children makes me anxious. It also makes me feel bad about my own skills because I'm struggling so much just parenting 3.
For now, I'm reciting "Nothing is Impossible with God" as my mantra. About 100x a day.
The psychiatrist from the RTC called today. Hip Hip Hooray! This is only the second time I've talked to him since Sissy's placement. He filled us in on their treatment for her which included her EEG and EKG results, her liver enzyme and cholesterol lab work and their med plan. He's adding lamictal to her list. No surprise there. I anticpated that. So she's on an anti-psychotic, an anti-depressant and an anti-convulsant. They're going to start neuro feedback as well. I'm glad, i was hoping they would. Her EEG and EKG did not turn up anything unusual and he believes the diffuse spike from her EEG in September when she was with us is due to the Wellbutrin she was on. Her liver enzymes and cholesterol are fine. Her weight gain is being monitored but I suspect the lamictal will counter act the respirdol when it comes to weight issues. Apparently, she's been crying alot but of course we've not known about any of that because she manipulates and lies when she talks to us and has painted a picture that she is doing just fine. And since the staff isn't calling us to give us a heads up on her progress, there would be no way for us to know that she's been lying. Since he didn't mention the EEG showing any developmental delay, I can only assume they have dropped the issue of diagnosing her on the spectrum (but I didn't ask flat out if that was the case so it's anybody's guess.)
Aspie Boy slept last night on the trazadone but he is CRAZY FAST. I know, I know. It takes 3 - 6 weeks to know how he will respond. But CRAZY FAST! makes me nervous.
I know that the meds are there to help people manage their mental health, that's what they're designed for. What I don't know is I will be adequate to manage these meds for the children. Sissy will eventually come home and still be on all of these meds. Aspie Boy's medicinal future is up in the air. Getting into anti convulsants and anti psychotics makes me nervous. I'm feeling very inadequately equipped and I can take the time to make myself more adequately equipped but always at the risk of my sanity and wellbeing. Hello? I'm still just Jennie. You know, the girl that grew into a woman that wanted to be a mom?
Pharmacologist/Psychiatrist/AT/OT/Psychologist? Not so much.
This is so much more than just reading some RAD books and helping a child nurture. This is so much more than taking Aspie Boy to an OT for weekly appointments. I'm not prepared for this emotionally, mentally, physically, financially. It's killing my social and spiritual life. And I live in an environment that is pisspoor for mental health support. I'm really not sure what to do or how to get to a point of feeling safe to parent such demanding needs and still feel like an adult woman that has her own life.
For those of you with double and triple the number of children I have (3), how on earth do you manage it? Where do you get the time, the energy, the financial resources, the support, the help, the physical and mental strength, the social and spiritual interaction required to do such a demanding job? We're sinking in all seven areas of our wellness wheel and I don't know how to make it work. Just knowing that some of you are parenting that number of special needs children makes me anxious. It also makes me feel bad about my own skills because I'm struggling so much just parenting 3.
For now, I'm reciting "Nothing is Impossible with God" as my mantra. About 100x a day.
Thursday, January 14, 2010
more on Aspie boy
because i still don't know how to respond directly to comments ... LJ? no problem. I can maneuver that blogosphere. Blogspot? it befuddles me. Anyway, here's an updated post. If you haven't read the first post on Aspie Boy's new meds, read that one first: http://threesmithkids.blogspot.com/2010/01/just-one-more-thing-on-my-list.html
OK, so since everyone had wonderful comments, I realized i didn't give enough history on Aspie boy's mental health issues so my readers can give more direct help. Although I'm totally loving all of this attention, literally eating it up! so nice to be loved, even in virtual life.
Aspie Boy has a gentic disorder and is symptomatic for Asperger's and ADHD. In other words, he has a genetic cause for his issues. He has a host of minor medical issues including a geographic tongue, reflux, chronic constipation, severe allergies and minor skin issues. He wears ankle-foot orthotics for chronic toe-walking. Then, the icing on the cake is all the spectral issues. His IQ is 80, just 2 derivations above MR so he is cognitively impaired and developmentally delayed. He has a paradoxical affect to just about EVERYTHING both Rx and OTC which makes medically treating him very difficult. (with an MRI we did to rule out a seizure from a minor concusion, it took adult sedatives to take him down at age 4 and even then he only stayed mildly sedated for 20 minutes with a FOUR HOUR scream-fest side effect as he came out of the drug). He also has incontinence issues, typical of developmental delay.
When he was diagnosed at age 4, the neuropsych and neurologist and specialist, without reading each other's charts all said the same thing: expect to see bipolar with onset of adolesence with possible seizure activity around age 10 through puberty.
Bio history: First mom is bipolar with a schizoid affect. First dad's history is unknown other than he was in the mild/moderate resource class with a seizure disorder and genetic disorder.
So he's on lots of meds to treat his medical ailments and we've tried the following meds for the spectral and ADHD issues:
Clonidine - no success
Methylphenidate - OMG, NEVER again
Tenex - a reprieve from the stimming and helped him sleep but as his body has adjusted, it has become less helpful. Increasing the dose made him volatile and moody. He'll stay on this one though at the 2 mg level
Melatonin - we started at 3 mg and are at 5 mg currently
mineral and vitamin supplements - no affect
GFCF - not even going to bother. He just has too much going on for it to be worth the effort, plus he has extreme sensory issues including vomitting to food textures. THAT's not fun.
Sometimes it's really hard to determine if the ADHD is more sensory driven than anything else so we do alot of at-home OT techniques to reduce his sensory input which helps for a little while but gosh, I'm not an OT and I can't do sensory input for him all day! Trampoline, water and deep compressions are optimal.
See, I'm well versed in the spectral stuff AS WELL as RAD. *beams at self* I'm multi-skilled. lol
OK, so the new med is Trazadone, 50 mg. The info says specifically that it is used in low doses for insomnia. This choice was made after 3 years of upping his Melatonin and getting success but only for a little while and upping his Tenex and discovering it made him very moody and angry.
Right now, he's so crazy, I can't do a thing for him! He's in bed because typical of spectral kids, routine is law but falling asleep? not so much.
So here's what happened to Sissy and why I'm seeing direct parallels:
Sissy tried every ADHD med on the books with only minor success. We moved to straterra. nope. She had extreme sleeping issues and bed wetting issues so the doc put her on a low dose of elavil (25 mg) last September. Getting the appropriate sleep tossed her into a manic state. She was put on Depakote at 500 mg in November with a diagnosis of bipolar (although until she's an adult and her bipolar is legitamizable, her charts read "mood disorder") She was on depakote for four months and was only minorly stable. We put her on wellbutrin, she had some seizure-type activity. By September we were taking her off wellbutrin and depakote and putting her on lamictal with abilify to carry her moods. That didn't work. She switched to respiradone (2 mg) and the RTC added toffrenol (sp?) in December.
Bio history - first mom went to RTC at age 13, diagnosed bipolar at the RTC, put on lithium with ECT to stabilize her moods. She never went home. Bounced from group home to RTCs to foster until adulthood.
All the kids have different first dads with different medical/mental health issues because typical of adults with severe mental health issues with cognitive impairment, they pair up with other adults with severe mental health issues with cognitive impairment. Fun. It's like playing chess with a blindfold on.
gotta love DNA.
I'm waiting for the day someone hands me an honorary PhD in psychiatry.
OK, now that you know all of the medical story, give me more of your excellent advice! lol
OK, so since everyone had wonderful comments, I realized i didn't give enough history on Aspie boy's mental health issues so my readers can give more direct help. Although I'm totally loving all of this attention, literally eating it up! so nice to be loved, even in virtual life.
Aspie Boy has a gentic disorder and is symptomatic for Asperger's and ADHD. In other words, he has a genetic cause for his issues. He has a host of minor medical issues including a geographic tongue, reflux, chronic constipation, severe allergies and minor skin issues. He wears ankle-foot orthotics for chronic toe-walking. Then, the icing on the cake is all the spectral issues. His IQ is 80, just 2 derivations above MR so he is cognitively impaired and developmentally delayed. He has a paradoxical affect to just about EVERYTHING both Rx and OTC which makes medically treating him very difficult. (with an MRI we did to rule out a seizure from a minor concusion, it took adult sedatives to take him down at age 4 and even then he only stayed mildly sedated for 20 minutes with a FOUR HOUR scream-fest side effect as he came out of the drug). He also has incontinence issues, typical of developmental delay.
When he was diagnosed at age 4, the neuropsych and neurologist and specialist, without reading each other's charts all said the same thing: expect to see bipolar with onset of adolesence with possible seizure activity around age 10 through puberty.
Bio history: First mom is bipolar with a schizoid affect. First dad's history is unknown other than he was in the mild/moderate resource class with a seizure disorder and genetic disorder.
So he's on lots of meds to treat his medical ailments and we've tried the following meds for the spectral and ADHD issues:
Clonidine - no success
Methylphenidate - OMG, NEVER again
Tenex - a reprieve from the stimming and helped him sleep but as his body has adjusted, it has become less helpful. Increasing the dose made him volatile and moody. He'll stay on this one though at the 2 mg level
Melatonin - we started at 3 mg and are at 5 mg currently
mineral and vitamin supplements - no affect
GFCF - not even going to bother. He just has too much going on for it to be worth the effort, plus he has extreme sensory issues including vomitting to food textures. THAT's not fun.
Sometimes it's really hard to determine if the ADHD is more sensory driven than anything else so we do alot of at-home OT techniques to reduce his sensory input which helps for a little while but gosh, I'm not an OT and I can't do sensory input for him all day! Trampoline, water and deep compressions are optimal.
See, I'm well versed in the spectral stuff AS WELL as RAD. *beams at self* I'm multi-skilled. lol
OK, so the new med is Trazadone, 50 mg. The info says specifically that it is used in low doses for insomnia. This choice was made after 3 years of upping his Melatonin and getting success but only for a little while and upping his Tenex and discovering it made him very moody and angry.
Right now, he's so crazy, I can't do a thing for him! He's in bed because typical of spectral kids, routine is law but falling asleep? not so much.
So here's what happened to Sissy and why I'm seeing direct parallels:
Sissy tried every ADHD med on the books with only minor success. We moved to straterra. nope. She had extreme sleeping issues and bed wetting issues so the doc put her on a low dose of elavil (25 mg) last September. Getting the appropriate sleep tossed her into a manic state. She was put on Depakote at 500 mg in November with a diagnosis of bipolar (although until she's an adult and her bipolar is legitamizable, her charts read "mood disorder") She was on depakote for four months and was only minorly stable. We put her on wellbutrin, she had some seizure-type activity. By September we were taking her off wellbutrin and depakote and putting her on lamictal with abilify to carry her moods. That didn't work. She switched to respiradone (2 mg) and the RTC added toffrenol (sp?) in December.
Bio history - first mom went to RTC at age 13, diagnosed bipolar at the RTC, put on lithium with ECT to stabilize her moods. She never went home. Bounced from group home to RTCs to foster until adulthood.
All the kids have different first dads with different medical/mental health issues because typical of adults with severe mental health issues with cognitive impairment, they pair up with other adults with severe mental health issues with cognitive impairment. Fun. It's like playing chess with a blindfold on.
gotta love DNA.
I'm waiting for the day someone hands me an honorary PhD in psychiatry.
OK, now that you know all of the medical story, give me more of your excellent advice! lol
just one more thing on my list
trying really hard not to panic.
REALLY hard.
breathing, breathing, breathing...
First - The Dad hurt his knee nearly two weeks ago at the park with the kids. The injury put him out of work for a week and he's hobbling this week but trying to work. This means I've done triple duty - mom, housekeeper, employee. I work every week but since he's been down for the count, I've had to do extra to keep up the business so we can...
Second - pay bills! OMG. I'm trying not to freak out about January's bills. In case you didn't notice, it's cold out there and that really puts a damper on window cleaning.
breathing, breathing, breathing...
Then.
THEN!
Third - Aspie boy has not been sleeping. Let me start again. He always has issues with sleep, nature of his disorder, but it's been particularly bad. The other night he barely slept at all in addition, his stimming has been awful. Let me restate. He's been on non-stop motion, rocking, pacing, taping, humming, singing, talking, flapping, shrieking, he's making me motion sick watching him. So, I called the specialist.
They're putting him on an anti-depressant to help him sleep. OK, you say, no big deal, you say. Docs do that all the time, you say. Yup. they do. And ordinarily I'd be relieved for him to finally be getting some sleep except...
Except last year, 15 months ago, to be exact, just before Sissy turned 9, the docs put her on an antidepressant to help her sleep. Which it did. Getting enough sleep at night effectively threw her straight into manic and three months later she was diagnosed bipolar.
Aspie Boy just turned 9. He's not sleeping. He's getting an antidepressant. His docs told me when he was 4 that he'd likely be diagnosed bipolar with the onset of puberty. Bipolar is hereditary. You see where I'm headed with this?
OMG!
breathing, breathing, breathing...
I'm really trying hard not to freak out. Really, I'm trying.
It's not working.
REALLY hard.
breathing, breathing, breathing...
First - The Dad hurt his knee nearly two weeks ago at the park with the kids. The injury put him out of work for a week and he's hobbling this week but trying to work. This means I've done triple duty - mom, housekeeper, employee. I work every week but since he's been down for the count, I've had to do extra to keep up the business so we can...
Second - pay bills! OMG. I'm trying not to freak out about January's bills. In case you didn't notice, it's cold out there and that really puts a damper on window cleaning.
breathing, breathing, breathing...
Then.
THEN!
Third - Aspie boy has not been sleeping. Let me start again. He always has issues with sleep, nature of his disorder, but it's been particularly bad. The other night he barely slept at all in addition, his stimming has been awful. Let me restate. He's been on non-stop motion, rocking, pacing, taping, humming, singing, talking, flapping, shrieking, he's making me motion sick watching him. So, I called the specialist.
They're putting him on an anti-depressant to help him sleep. OK, you say, no big deal, you say. Docs do that all the time, you say. Yup. they do. And ordinarily I'd be relieved for him to finally be getting some sleep except...
Except last year, 15 months ago, to be exact, just before Sissy turned 9, the docs put her on an antidepressant to help her sleep. Which it did. Getting enough sleep at night effectively threw her straight into manic and three months later she was diagnosed bipolar.
Aspie Boy just turned 9. He's not sleeping. He's getting an antidepressant. His docs told me when he was 4 that he'd likely be diagnosed bipolar with the onset of puberty. Bipolar is hereditary. You see where I'm headed with this?
OMG!
breathing, breathing, breathing...
I'm really trying hard not to freak out. Really, I'm trying.
It's not working.
Wednesday, January 13, 2010
a lesson in patience
I'm still trying to process last week's therapy session in which I was asked how I am working through my grief. I am so annoyed with myself that i don't have an answer yet. I keep thinking, and reading and trying to sort it out but it seems the only emotion I can dredge up is anger. And that's a start, isn't it? I just don't really like the anger emotion because it doesn't feel productive to me and because there has been so much anger in my life, I really would like to have had enough of it already!
With only anger hanging around me, I have been attacking my usual activities and have realized that people, just ordinary, every day people can make me pretty mad. They have such a narrow focus that it should make me laugh, not want to hurl hard objects at their heads or cry at the insanity of it. Yet I find myself henpecking and nitpicking, rolling my eyes and in general, being easily annoyed with ridiculous things.
Our local christian radio station has a great morning show team which I listen to regularly. We've found that our family's mornings are much less chaotic, angry and short-tempered if tunes about God are infiltrating the atmosphere of our home. I make breakfast and lunches and we finish the previous night's homework listenting to this music and the morning show team. But the host of the morning show has gotten me in a dither.
Apparently, his sister got his 2 year old son a Little Tykes playset for Christmas. He has spent several mornings discussing the foibles of attempting to assemble the enormous plastic pieces that fail to bend to his will and fit according to the diagrams. At first it was amusing, as he laughed at himself and his ineptitude to follow the pictoral instructions and the minor scuffles it caused for him and his wife. But by day four, this playset still unassembled and his morning bit about it beginning to get old, he said the darndest thing that nearly made me drive off the road.
I was driving back from dropping the kids off at school, still listening to this ongoing drama when the sidekick of the morning show asked the host why he thought he was having so much trouble with this playset. The host said that he felt it was God's way of teaching him patience, that the past 7 days of efforts had definitely given him pause to consider his temper and how he could alter his attitude when doing things that challenge him.
OK. At face value, there is merit to what he's saying. I really like these guys, I've met them, actually had the opportunity to be on the morning show two months ago, I have no issue with them. But when you compare assembling a playset as a lesson in patience to the life trials of so many others, well, that just makes me want to puke. Seriously? God teaches him patience through a little tykes toy but he chooses to teach me patience through health problems, infertility, adoption of special needs children, bankruptcy, economic trials, RADs, RTCs ...
Seriously?
Either God is really cruel and unkind and hates me or the host of the radio station leads a very narrow, simple life. I literally shouted at the radio in the van, "I can give you an opportunity to learn patience! Come to my house for A DAY!!!! And then realize that the insanity and patience-demanding things you encounter in that ONE DAY is what I endure EVERYDAY!"
You see? Completely irrational anger. This shouldn't have been such a trigger for me. It's just a stupid radio show. It's just a silly little joke about the host's inability to assemble a toy. For me, it's one more reminder how much harder my life is when I chose to serve and love the same God as he did. It's just one more thing that tells me that there are simpler, easier, happier lives out there and I'm not living them. It's one more thing telling me that karma is bupkis. Choosing to do the right things, to live a life that honors God doesn't bring you the easy lessons in patience. How did the host of this radio show get so blessed to have a cool job, a wife, two beautiful biological children while my life has been one endless struggle of pain, sorrow and anguish? I don't know how he got that easy lesson in patience, I sure wish I knew his magic charms with the Creator because man, I wish God had taught me patience that way!
I will be glad when I get past this anger. It just doesn't move me forward and I hate getting mad about these things. I have a husband, I have children, I have a home, I have ... to still learn a lesson in patience.
With only anger hanging around me, I have been attacking my usual activities and have realized that people, just ordinary, every day people can make me pretty mad. They have such a narrow focus that it should make me laugh, not want to hurl hard objects at their heads or cry at the insanity of it. Yet I find myself henpecking and nitpicking, rolling my eyes and in general, being easily annoyed with ridiculous things.
Our local christian radio station has a great morning show team which I listen to regularly. We've found that our family's mornings are much less chaotic, angry and short-tempered if tunes about God are infiltrating the atmosphere of our home. I make breakfast and lunches and we finish the previous night's homework listenting to this music and the morning show team. But the host of the morning show has gotten me in a dither.
Apparently, his sister got his 2 year old son a Little Tykes playset for Christmas. He has spent several mornings discussing the foibles of attempting to assemble the enormous plastic pieces that fail to bend to his will and fit according to the diagrams. At first it was amusing, as he laughed at himself and his ineptitude to follow the pictoral instructions and the minor scuffles it caused for him and his wife. But by day four, this playset still unassembled and his morning bit about it beginning to get old, he said the darndest thing that nearly made me drive off the road.
I was driving back from dropping the kids off at school, still listening to this ongoing drama when the sidekick of the morning show asked the host why he thought he was having so much trouble with this playset. The host said that he felt it was God's way of teaching him patience, that the past 7 days of efforts had definitely given him pause to consider his temper and how he could alter his attitude when doing things that challenge him.
OK. At face value, there is merit to what he's saying. I really like these guys, I've met them, actually had the opportunity to be on the morning show two months ago, I have no issue with them. But when you compare assembling a playset as a lesson in patience to the life trials of so many others, well, that just makes me want to puke. Seriously? God teaches him patience through a little tykes toy but he chooses to teach me patience through health problems, infertility, adoption of special needs children, bankruptcy, economic trials, RADs, RTCs ...
Seriously?
Either God is really cruel and unkind and hates me or the host of the radio station leads a very narrow, simple life. I literally shouted at the radio in the van, "I can give you an opportunity to learn patience! Come to my house for A DAY!!!! And then realize that the insanity and patience-demanding things you encounter in that ONE DAY is what I endure EVERYDAY!"
You see? Completely irrational anger. This shouldn't have been such a trigger for me. It's just a stupid radio show. It's just a silly little joke about the host's inability to assemble a toy. For me, it's one more reminder how much harder my life is when I chose to serve and love the same God as he did. It's just one more thing that tells me that there are simpler, easier, happier lives out there and I'm not living them. It's one more thing telling me that karma is bupkis. Choosing to do the right things, to live a life that honors God doesn't bring you the easy lessons in patience. How did the host of this radio show get so blessed to have a cool job, a wife, two beautiful biological children while my life has been one endless struggle of pain, sorrow and anguish? I don't know how he got that easy lesson in patience, I sure wish I knew his magic charms with the Creator because man, I wish God had taught me patience that way!
I will be glad when I get past this anger. It just doesn't move me forward and I hate getting mad about these things. I have a husband, I have children, I have a home, I have ... to still learn a lesson in patience.
Tuesday, January 12, 2010
Processing their adoption stories
All three of my children process thier adoption story differently, even though they are siblings and they have fairly regular contact with their biological family.
Sissy does it in spurts. She'll have a period in which she asks lots of questions but won't listen to the answers. Then she'll leave it alone for a time and act like it's no big deal. Of course, her story comes with sorrow since she was the only one of the three that was in their birthmother's care, the impetus for her eventual RADs diagnosis.
Aspie Boy doesn't really care. Or at least he doesn't give the appearance of caring. But it begs the question, with an IQ just two derivations above MR (mental retardation), just how much of those more complex and abstract concepts about family is he willing to understand or even capable of understanding? When he asks, it's usually the same question, "but WHY isn't my birthmom my mom?" which is always answered in the same way, addressing birthmom's specific needs that prevented her from parenting.
But Wonder Girl has never really asked, until recently. Last night's conversation after bathtime was too adorable to not post it.
I was toweling her off and she said, "Mom, hey, look! I'm going to get my boobies soon!"
I just smiled and said, "Well, usually breasts don't develop until a girl is older than 5."
"Oh." she said. Then as an afterthought, "But my baby is growing in my tummy right now!"
"Why do you say that?" I asked.
"Because it is! Girls make babies in their tummies!"
"when they are grown up and married to a man, yes." [1]
"oh. right. But mom? When does a baby get in there? when did I get in YOUR tummy?"
"When a mommy and a daddy love each other, that's when they can make a baby together. And remember? You didn't grow in my tummy."
"Oh, yeah. I forgot. Why didn't I grow in your tummy?"
"Because my baby maker, it's called a uterus, is broken."
"So you can't make babies?"
"nope."
She put one hand on my shoulder and hung her head, shaking it, "That's too bad." Then she bit her lip. "sorry, mom."
That was probably The.Nicest.Thing. anyone has ever said to me about my infertilty. "Well, it's ok. I still got to be a mom."
"Yeah! and one day I'm going to be a mommy, just like you!" Then her face went dark and fear was in her eyes. "MOM! what if my baby maker is broken?!"
"Then if you still really want to be a mommy, you can adopt children like I did." [2]
"OK!"
I finished dressing her and neither one of us said anything for awhile. Then she said, "Mom? If Sissy, Aspie Boy and I grew in your tummy, would we still be Sissy, Aspie Boy and Wonder Girl?"
A question I ask myself all the time as I process my infertility grief. How would my life be different if I had biological children, who would my children be? And I always come back to the same thought, but then I wouldn't have shared my life with Sissy, Aspie Boy and Wonder Girl and they are too wonderful to have never loved! So I answered Wonder Girl the same way I answer my own thoughts, "I think so, honey, I really think I still would have been the Mommy to Sissy, Aspie Boy and You. One way or another, I was meant to be your mommy and you guys were meant to be my children."
She liked my answer and smiled her approval. "Yeah, cuz that would be weird if I was someone else because my birthmom gave me my name and then who would I be?"
"Actually, I gave you your name. And Aspie Boy's and Sissy's middle name. Birthmom only gave Sissy her first name."
"Really? YOU picked my name?"
"Yup."
"Cool!" and she hugged me, hard, then grabbed her toothbrush to start brushing but just as it entered her mouth she stopped and said, "I want you to do it... please."
So I took her toothbrush and lovingly made all of her tiny baby teeth as clean as I could and we giggled at each other because she kept making faces with her eyes and eyebrows while I brushed.
And that's how Wonder Girl processes her adoption story. I still havent' made their stories into little books for them. One day I'll get to it.
[1] yes,yes, i know, i told a little lie about how babies get here. At 5, I didn't think she was ready to hear the lesson about HOW babies are made and all of the various ways families are formed outside of the biblical construct God intended for families. And PLEASE don't start commenting about all of the wonderful families that are created outside of that construct because i KNOW that, I'm not dissing all of those wonderful stories. But she's 5. And it's hard enough to process one's inception within the normal mom/dad/marriage/make a baby by sexual intercourse concept let alone through adoption when a birthmother is deemed unfit by courts, the same birthmother that unwittingly harmed an older sibling! Baby steps. Baby steps. One day we'll cross all of those bridges.
[2] this isn't actually the full definition of my opinion about why someone would choose to adopt. I wholly subscribe to the belief that adoption is NEVER a plan B to parenting, adoption should be something a person actively desires because they feel compelled to help a child that is parentless or in need, or both. I regularly tell woman that come to me about their infertility, "don't choose adoption until you've grieved your unborn children and are prepared to love another woman's child and have understood and are prepared to accept all of the nuances that go with that child and his/her biological history and family. It's a different path to parenting, not an alternative to bearing biological children, period.
Sissy does it in spurts. She'll have a period in which she asks lots of questions but won't listen to the answers. Then she'll leave it alone for a time and act like it's no big deal. Of course, her story comes with sorrow since she was the only one of the three that was in their birthmother's care, the impetus for her eventual RADs diagnosis.
Aspie Boy doesn't really care. Or at least he doesn't give the appearance of caring. But it begs the question, with an IQ just two derivations above MR (mental retardation), just how much of those more complex and abstract concepts about family is he willing to understand or even capable of understanding? When he asks, it's usually the same question, "but WHY isn't my birthmom my mom?" which is always answered in the same way, addressing birthmom's specific needs that prevented her from parenting.
But Wonder Girl has never really asked, until recently. Last night's conversation after bathtime was too adorable to not post it.
I was toweling her off and she said, "Mom, hey, look! I'm going to get my boobies soon!"
I just smiled and said, "Well, usually breasts don't develop until a girl is older than 5."
"Oh." she said. Then as an afterthought, "But my baby is growing in my tummy right now!"
"Why do you say that?" I asked.
"Because it is! Girls make babies in their tummies!"
"when they are grown up and married to a man, yes." [1]
"oh. right. But mom? When does a baby get in there? when did I get in YOUR tummy?"
"When a mommy and a daddy love each other, that's when they can make a baby together. And remember? You didn't grow in my tummy."
"Oh, yeah. I forgot. Why didn't I grow in your tummy?"
"Because my baby maker, it's called a uterus, is broken."
"So you can't make babies?"
"nope."
She put one hand on my shoulder and hung her head, shaking it, "That's too bad." Then she bit her lip. "sorry, mom."
That was probably The.Nicest.Thing. anyone has ever said to me about my infertilty. "Well, it's ok. I still got to be a mom."
"Yeah! and one day I'm going to be a mommy, just like you!" Then her face went dark and fear was in her eyes. "MOM! what if my baby maker is broken?!"
"Then if you still really want to be a mommy, you can adopt children like I did." [2]
"OK!"
I finished dressing her and neither one of us said anything for awhile. Then she said, "Mom? If Sissy, Aspie Boy and I grew in your tummy, would we still be Sissy, Aspie Boy and Wonder Girl?"
A question I ask myself all the time as I process my infertility grief. How would my life be different if I had biological children, who would my children be? And I always come back to the same thought, but then I wouldn't have shared my life with Sissy, Aspie Boy and Wonder Girl and they are too wonderful to have never loved! So I answered Wonder Girl the same way I answer my own thoughts, "I think so, honey, I really think I still would have been the Mommy to Sissy, Aspie Boy and You. One way or another, I was meant to be your mommy and you guys were meant to be my children."
She liked my answer and smiled her approval. "Yeah, cuz that would be weird if I was someone else because my birthmom gave me my name and then who would I be?"
"Actually, I gave you your name. And Aspie Boy's and Sissy's middle name. Birthmom only gave Sissy her first name."
"Really? YOU picked my name?"
"Yup."
"Cool!" and she hugged me, hard, then grabbed her toothbrush to start brushing but just as it entered her mouth she stopped and said, "I want you to do it... please."
So I took her toothbrush and lovingly made all of her tiny baby teeth as clean as I could and we giggled at each other because she kept making faces with her eyes and eyebrows while I brushed.
And that's how Wonder Girl processes her adoption story. I still havent' made their stories into little books for them. One day I'll get to it.
[1] yes,yes, i know, i told a little lie about how babies get here. At 5, I didn't think she was ready to hear the lesson about HOW babies are made and all of the various ways families are formed outside of the biblical construct God intended for families. And PLEASE don't start commenting about all of the wonderful families that are created outside of that construct because i KNOW that, I'm not dissing all of those wonderful stories. But she's 5. And it's hard enough to process one's inception within the normal mom/dad/marriage/make a baby by sexual intercourse concept let alone through adoption when a birthmother is deemed unfit by courts, the same birthmother that unwittingly harmed an older sibling! Baby steps. Baby steps. One day we'll cross all of those bridges.
[2] this isn't actually the full definition of my opinion about why someone would choose to adopt. I wholly subscribe to the belief that adoption is NEVER a plan B to parenting, adoption should be something a person actively desires because they feel compelled to help a child that is parentless or in need, or both. I regularly tell woman that come to me about their infertility, "don't choose adoption until you've grieved your unborn children and are prepared to love another woman's child and have understood and are prepared to accept all of the nuances that go with that child and his/her biological history and family. It's a different path to parenting, not an alternative to bearing biological children, period.
Sunday, January 10, 2010
RTC phones
First, the RTC told us we only get three phone calls a week, 10 minutes each between 6-8 pm and we had to pick which three nights we would call. So we picked Tuesday, Thursday and Sunday.
Second, the RTC gives the kids their showers between 6-8 therefore many times we've called and Sissy has not been available.
Third, the RTC says they'll have Sissy either intiate the call or call us back. That's only happened twice and one of those times they dialed our home phone instead of my cell phone (which is listed on her forms as the initial contact number) and we weren't at home to receive the call.
Fourth, the RTC has done a lot of nighttime outings, especially on Sundays so the kids aren't back until after our call time and then hurried straight to showers and beds without phone calls. We switched to Saturdays but have had no success with it over the number of missed calls on Sundays.
Fifth, the RTC changed over their phone lines and there have been many glitches which have made phone calls either problematic or impossible. We missed calling her on her birthday because of it!
Sixth, before placement, Sissy was terrified of the phone so learning to communicate with us by phone has been difficult and that's an understatement. It's never a conversation by definition. In addition, because Sissy is so easily distracted, we spend most of the 10 minutes repeating ourselves 20 times only to hear Sissy say, "HUH?" or "What?" or "I don't know" in response.
Seventh, Sissy never seems to care if we call or not and when we apologize to her for missing other calls because of the phone glitches or outings or time constraints, she just says, "oh. i didn't know" so it feels like we're getting frustrated or imagining her worry and hurt feelings and it's for naught.
Eighth, since I was a little annoyed (ok, I was mad) about Sissy's most recent TL and her behaviors, we've only talked to her once and I'm actually kind of glad for the reprieve even though I still feel obligated and neglectful when I don't talk to her when I'm allowed to. Regardless of all of it, it's still nice to hear her voice.
Ninth, our discussion with the staff about our dissatisfaction about the phone contact hasn't solved any of these issues.
And that's what I have to say about that.
If your child has been in RTC, how did YOU manage the whole phone thing? What became a hot button for you? What fears or anxieties did you have to put aside? And finally, how important is it to stay connected by phone with these RADishes when they're at and RTC? In other words, should I be less concerned about the vocal contact than I should be about her working through her treatment even if that treatment means less contact is more? (but with RADs,that seems counterintuitive.)
Diga me!
Second, the RTC gives the kids their showers between 6-8 therefore many times we've called and Sissy has not been available.
Third, the RTC says they'll have Sissy either intiate the call or call us back. That's only happened twice and one of those times they dialed our home phone instead of my cell phone (which is listed on her forms as the initial contact number) and we weren't at home to receive the call.
Fourth, the RTC has done a lot of nighttime outings, especially on Sundays so the kids aren't back until after our call time and then hurried straight to showers and beds without phone calls. We switched to Saturdays but have had no success with it over the number of missed calls on Sundays.
Fifth, the RTC changed over their phone lines and there have been many glitches which have made phone calls either problematic or impossible. We missed calling her on her birthday because of it!
Sixth, before placement, Sissy was terrified of the phone so learning to communicate with us by phone has been difficult and that's an understatement. It's never a conversation by definition. In addition, because Sissy is so easily distracted, we spend most of the 10 minutes repeating ourselves 20 times only to hear Sissy say, "HUH?" or "What?" or "I don't know" in response.
Seventh, Sissy never seems to care if we call or not and when we apologize to her for missing other calls because of the phone glitches or outings or time constraints, she just says, "oh. i didn't know" so it feels like we're getting frustrated or imagining her worry and hurt feelings and it's for naught.
Eighth, since I was a little annoyed (ok, I was mad) about Sissy's most recent TL and her behaviors, we've only talked to her once and I'm actually kind of glad for the reprieve even though I still feel obligated and neglectful when I don't talk to her when I'm allowed to. Regardless of all of it, it's still nice to hear her voice.
Ninth, our discussion with the staff about our dissatisfaction about the phone contact hasn't solved any of these issues.
And that's what I have to say about that.
If your child has been in RTC, how did YOU manage the whole phone thing? What became a hot button for you? What fears or anxieties did you have to put aside? And finally, how important is it to stay connected by phone with these RADishes when they're at and RTC? In other words, should I be less concerned about the vocal contact than I should be about her working through her treatment even if that treatment means less contact is more? (but with RADs,that seems counterintuitive.)
Diga me!
Saturday, January 9, 2010
more info
PBS' This Emotional Life Episode 1 addresses attachment issues. Need to send more information to your loved ones that don't understand? Need more information for yourself as you traverse the murky waters of life with a RAD child? You can watch the episode online.
http://www.pbs.org/thisemotionallife/video/family-friends-lovers
Many thanks to Diana from http://goldtorefine.blogspot.com for reminding me of the episode on her blog. All three episodes are wonderful, BTW.
http://www.pbs.org/thisemotionallife/video/family-friends-lovers
Many thanks to Diana from http://goldtorefine.blogspot.com for reminding me of the episode on her blog. All three episodes are wonderful, BTW.
Thursday, January 7, 2010
grieving?
My therapist agrees, PTSD. And then she asked, "how are you spending your grief engergy?"
I don't know. I absolutely can not figure out how I'm processing my grief.
I'm not overly angry or short tempered. I don't cry. I'm not depressed. I'm not losing sleep. I don't do drugs, I don't abuse alcohol. I don't do road-rage. I had those two minor panic attacks but I talked myself through them without incident. She asked if I'm overeating, I said, "hey, it's the holidays, of course!" and then I thought that it might be a possiblity so I told her to ask me again in a few weeks after the holiday food-love is over. She asked me about how it might be showing up in a few other areas but my answers were still either no or it might be possible but there are so many other facts it's hard to delinate if it's grief or just my nature. (because it goes without saying, I'm not the average Joe and my therapist and I have been over that too.)
So I'm back to square one, leaving therapy with a big question mark over my head. "How am I spending my grief energy?" because clearly, if I'm not grieving through all the nonsense with Sissy, then I'm not working toward healing. Clearly, helping myself means I have more of me to help Sissy. One begets the other but how do I process this emotion if I don't know how to?
Digging deeper... again.
Seriously, do other people spend this much energy on trying to be a better person?
I don't know. I absolutely can not figure out how I'm processing my grief.
I'm not overly angry or short tempered. I don't cry. I'm not depressed. I'm not losing sleep. I don't do drugs, I don't abuse alcohol. I don't do road-rage. I had those two minor panic attacks but I talked myself through them without incident. She asked if I'm overeating, I said, "hey, it's the holidays, of course!" and then I thought that it might be a possiblity so I told her to ask me again in a few weeks after the holiday food-love is over. She asked me about how it might be showing up in a few other areas but my answers were still either no or it might be possible but there are so many other facts it's hard to delinate if it's grief or just my nature. (because it goes without saying, I'm not the average Joe and my therapist and I have been over that too.)
So I'm back to square one, leaving therapy with a big question mark over my head. "How am I spending my grief energy?" because clearly, if I'm not grieving through all the nonsense with Sissy, then I'm not working toward healing. Clearly, helping myself means I have more of me to help Sissy. One begets the other but how do I process this emotion if I don't know how to?
Digging deeper... again.
Seriously, do other people spend this much energy on trying to be a better person?
Tuesday, January 5, 2010
speaking his mind
Aspie boy gets into the van at the car rider lane. "Mom? I want another sister."
I think to myself this is new. he's been singing the "i want a brother" song since the day we brought Wonder Girl home from the hospital. I offered, "Um. Why? Two isn't enough?"
"Well... Sissy's gone."
"Oh. You know she's coming back, right?"
"Can't we just have C~ instead?" (C~ is our totally awesome sitter/family friend)
"No. She's 18. I can't adopt a legal adult." (though I'd have loved to if that had ever been an option)
"Oh."
Later at supper, he started in again. "Mom. WHEN is Sissy coming home?"
"When she starts doing her goals."
"Well, is she?"
"Is she what?"
"Doing them?"
"No." I sighed with desperation.
"Why not?"
"I wish I could tell you that."
"Well, she just needs to start doing them because she can't come home unless she does."
i promise, I'm not feeding him these lines. It's not like he's reading my blog and he could care less about eavesedropping. These conversations were all him
"I agree. Why don't you tell Sissy so yourself?"
His eyes perked up. "When?"
"Tonight. In our phonecall."
He thought for a minute. "Really?"
"Yeah. If she won't hear it from me, maybe she'll hear it from you, her brother. I'd love it if you told her to do her goals so she came home. It might actually do her some good."
"OK!!"
Then when it was time to call her, the RTC phones were down again. Figures. (They recently changed over their phone system and they've had some serious issues with the new system.)
But I think I'm going to hold Aspie Boy to it and I think he'll tell her too. He's not one to mix words. If he has a thought in his head, you're going to hear it. And if you've not spent five minutes with an Asperger kid, then you haven't experienced this particular phenomenon and have no idea why the statement "if he has a thought in his head, you're going to hear it" makes me roll with laughter. It is the understatement of a lifetime.
I think to myself this is new. he's been singing the "i want a brother" song since the day we brought Wonder Girl home from the hospital. I offered, "Um. Why? Two isn't enough?"
"Well... Sissy's gone."
"Oh. You know she's coming back, right?"
"Can't we just have C~ instead?" (C~ is our totally awesome sitter/family friend)
"No. She's 18. I can't adopt a legal adult." (though I'd have loved to if that had ever been an option)
"Oh."
Later at supper, he started in again. "Mom. WHEN is Sissy coming home?"
"When she starts doing her goals."
"Well, is she?"
"Is she what?"
"Doing them?"
"No." I sighed with desperation.
"Why not?"
"I wish I could tell you that."
"Well, she just needs to start doing them because she can't come home unless she does."
i promise, I'm not feeding him these lines. It's not like he's reading my blog and he could care less about eavesedropping. These conversations were all him
"I agree. Why don't you tell Sissy so yourself?"
His eyes perked up. "When?"
"Tonight. In our phonecall."
He thought for a minute. "Really?"
"Yeah. If she won't hear it from me, maybe she'll hear it from you, her brother. I'd love it if you told her to do her goals so she came home. It might actually do her some good."
"OK!!"
Then when it was time to call her, the RTC phones were down again. Figures. (They recently changed over their phone system and they've had some serious issues with the new system.)
But I think I'm going to hold Aspie Boy to it and I think he'll tell her too. He's not one to mix words. If he has a thought in his head, you're going to hear it. And if you've not spent five minutes with an Asperger kid, then you haven't experienced this particular phenomenon and have no idea why the statement "if he has a thought in his head, you're going to hear it" makes me roll with laughter. It is the understatement of a lifetime.
PICTURES!
Who knew Aspie Boy could shoot hoops?! My student gave us their old B-Ball backboard and Aspie Boy just nonchalantly sauntered out of the house, picked up the ball and started throwing them in. Too bad he doesn't understand the dynamic of team sports or I'd put him on an intramural team!
Wonder Girl being a ham in the van while I ran to the clinic to retrieve the day planner I left behind at Aspie Boy's specialist appointment.
Sissy opening a birthday present in the van during the mad dash to get her back to the RTC on time after our 2 hour TL. Note: 2 hours is not long enough to pick up a child, take her to a restaurant, open gifts and get her back in timeSunday, January 3, 2010
Pondering
I returned late yesterday afternoon from another TL with Sissy and I was tired, road weary, headachey, had horrible stomach pains and was rather PO'ed with Sissy to boot. Then we watched Facing the Giants. (see below for link) Not a good movie to watch when you're already feeling pretty down in the mouth about how life is going and what God is or is not doing about it. I've seen it several times before but last night it seemed particularly poignant to our family's current struggles. Lots of tears and sniffling and wiping our snot on sleeves. I think I'd have taken a fist to the TV if I didn't have more self-control.
The night before TL, I was up, tossing and turning, praying and pondering. Visits with Sissy feel pointless because it's not reciprocal. It becomes more of a chore each time I go and less of a personal desire. Yearning? Yeah, right. That hasn't happened since I was an infertile woman hoping God would bless me with children. Which makes it even worse because I feel like a jerk for finding it so hard to continue to invest in a child I begged God to send to me. I feel like a heel for admitting that loving Sissy is extremely hard to do on the good days, you know, when she's not even here! Instead of absence making my heart grow fonder, Sissy's absence is making my heart hardened to her. So the night before, as I tried to sleep, the red flags were going up, the alarms were sounding, the anxiety was bubbling and praying didn't seem to give me answers. All I could say was, Dear God, help me not HATE this child, help me love her, erase my anger and contempt for her and tell me what to do to help her change!
Such was my state when I showed up at 10 A.M. for her TL. I knew she wanted to go to the mall but I had a plan B in case she didn't present me with a good reason to brave the mall with her. Plan B was to run the errands I needed to run if I had been at home instead of 3 hours away, visiting Sissy. The staff brought her to me and right away I could tell we weren't going to the mall.
The new jacket Sissy got for Christmas, the jacket we gave her 6 days earlier, looked like it had been worn for 16 years. Her hair was a rat's nest. Her face, clothes and teeth were covered with her breakfast, her shoelaces were untied, her jacket was on lopsided and unzipped, no mittens, no scarf, OMG. She looked horrible. Personal Hygeine (PH) is one of Sissy's goals. Apparently, she doesn't care to master that goal. Like, ever. Then, instead of greeting me, she was staring at the wall while she spoke, "Can we go to the mall?"
"Nope." That answer was easy to come up with. I was mad. Sissy and I have had several conversations about her PH and the fact that I travel a very long way to see her only a few short hours but I am always clean. I've rehearsed the play[1] that Katharine Leslie talks about and explained to Sissy that one way to demonstrate love is to be clean when you plan to spend time with someone. I've rehearsed the scene where you greet someone you haven't seen for awhile. We've been over this. A Lot. She's not a stupid girl. She refused to do her PH and greet me properly to see how I would respond. I didn't let her see my anger. I just said, "Nope." and announced my plan B as I got up and walked toward the van, leaving Sissy to figure out that she needed to follow me. I didn't offer to hug her hello or greet her properly in an effort to correct her. I didn't see the point.
As I dragged her around to do my errands, I talked to her about her goals. I pointed out that the other residents have new goals every week but she has had the same goals for four weeks. I asked her why she thought that was happening. She lied. "I don't have new goals." I said, "try again." She said, "ok. I'm not doing my goals."
BINGO!
I asked her how she expected to earn a ticket back home. She said, "do my goals."
BINGO!
I asked her what she planned to do about it. "I'm going to do my goals." So I said, "Great plan! Let's practice them right now!" *enter big cheesy grin*
Of course, she suddenly acted distracted, clueless and then got a mysterious pain in her neck that became so horrible she couldn't do anything else. "Gosh Sissy, you're karate is weak!" That got her goat. She managed to squeak out one dear man [2] statement that was an exact copy of the one I gave her. "So weak, your karate is!" and I feigned indifference. She tried again. Same exact statement. I just ignored her. She tried a third time, parrotting again. "A broken record!" I called out nonchalantly. "This from someone who is so smart!" Finally, she came up with a statement of value and I rewarded her with lots of hugs and kisses and high-fives. Then back to the horrible, unexplained pain in her neck with lots of lying about how her screaming to the staff was what strained her neck. I looked her dead in the eye, "This is when you say, 'mom, i'm anxious about you leaving soon.'"
She tried it out. "Does that feel right to you?" She nodded yes. I hugged her again. "I'll see you on the computer on Monday morning." No dice. She tried to fake me out with a huge, trumped up crying jag right in front of the Staff desk. Tears, jumping up and down and all. I just smiled and said, "Bye" and pushed her through the resident's door, the one that locks behind her. *enter devilish grin* At which point one of the staff, hearing her tirade jumped up and said, "Hey, is she O.K? I've NEVER seen her like that before!"
I just grinned at the staff, glad, relieved actually that someone FINALLY saw Sissy's nonsense and said, "Nope. She's fine. It's all an act, just for me."
The staff said, "You OK mom?"
"Oh, I'm fine. This is how it goes."
"She's never done that before!"
"Not for you, anyway."
Because until that moment, 42 days in, Sissy had yet to show them her behaviors (well, PH and refusing to do her goals, notwithstanding) Her lying, manipulating, anger, hysteria, 4 consecutive hours of screaming at the top of her lungs, all of it has always been exclusivley for me. But as I hoped, I pushed just the right buttons at just the right time to get her to be her true self in front of Staff. Score for Mom!
Today, a day later and after reflection, I don't really feel better. She's refusing to change, refusing to acknowledge that she is responsible for herself and her placement at the RTC. Apologize for the harm she did to the rest of her family? Yeah, right. Contrition? Nope. Restitution? Dream on. She spent the entire TL lying about whatever it was she felt the need to lie about, she tuned me out ALOT, she was spacey, distracted, it wasn't fun, at least not for me, anyway. I asked her what she thought about her placement. "Oh, I'm going to be here for a year and then I'll go home." She didnt' like my answer - No, my dear, you've got 120 days from insurance and if you're not better, when you come home, I'm going to make sure the rules for you are EXACTLY like it is here. *enter her glare of death for me with full eye contact to boot* (Why do they only make eye contact when you DON'T want them to? lol)
Tomorrow morning's video conference I'm going to spell it out for Sissy and the therapist. I'm not a happy mom. 120 days per insurance or not, Sissy is not welcome home if she isn't willing to change. And this momma isn't willing to travel 6 hours to visit her if she's going to look like a pig, be selfish, lie and refuse to acknowledge me in any meaningful way. Sissy just met the end of her rope. I know that RADishes have bad brain wiring. I get it. But that doesn't excuse Sissy from feigning ignorance and stupidity. Cause she's neither.
I called my friend that has a 19 year old RADish. "Tell me it's OK to not want my kid back." She's always sympathetic. "I've been there," she tells me, "and yes, it's OK to feel that way."
If you're reading this and praying for our family, please pray this pray with us:
Dear God, Please, PLEASE help Sissy see the need for change. Help Sissy face her giants. Give me (the Smith's) the strength to praise you if she changes and praise you if she doesn't. Nothing is impossible for you, not even RADs.
Amen
[1]I kept thinking about Katharine Leslie's "play" scenario - RADishes don't know the script to the play but we expect them to be the star. We have to coach them with the script until they can learn to improvise successfully based on patterning and practice. Leslie also says that RADishes don't know what is expected to them to show love, that parents need to personally assess what makes them feel like a relationship with their child is reciprocal. For me, Sissy being clean and greeting me with enthusiasm after I travel 3 hours to see her is MY need in the relationship. I've made that VERY clear to Sissy complete with lots of practice. At least MOM is doing her part. *pat self on back*
[2] dear man statment - "dear ---, I feel ---, when you ---, I want ---. How do you like my idea?"
(ie) Dear Mom, I feel happy and loved when you come to see me. I want you to do it more often. How do you like my idea?
Sissy and I actually rehearsed this one a couple of times before I gave her one more example and then asked her to make one on her own.
Facing the Giants linkeroo: http://www.facingthegiants.com/home.php
The night before TL, I was up, tossing and turning, praying and pondering. Visits with Sissy feel pointless because it's not reciprocal. It becomes more of a chore each time I go and less of a personal desire. Yearning? Yeah, right. That hasn't happened since I was an infertile woman hoping God would bless me with children. Which makes it even worse because I feel like a jerk for finding it so hard to continue to invest in a child I begged God to send to me. I feel like a heel for admitting that loving Sissy is extremely hard to do on the good days, you know, when she's not even here! Instead of absence making my heart grow fonder, Sissy's absence is making my heart hardened to her. So the night before, as I tried to sleep, the red flags were going up, the alarms were sounding, the anxiety was bubbling and praying didn't seem to give me answers. All I could say was, Dear God, help me not HATE this child, help me love her, erase my anger and contempt for her and tell me what to do to help her change!
Such was my state when I showed up at 10 A.M. for her TL. I knew she wanted to go to the mall but I had a plan B in case she didn't present me with a good reason to brave the mall with her. Plan B was to run the errands I needed to run if I had been at home instead of 3 hours away, visiting Sissy. The staff brought her to me and right away I could tell we weren't going to the mall.
The new jacket Sissy got for Christmas, the jacket we gave her 6 days earlier, looked like it had been worn for 16 years. Her hair was a rat's nest. Her face, clothes and teeth were covered with her breakfast, her shoelaces were untied, her jacket was on lopsided and unzipped, no mittens, no scarf, OMG. She looked horrible. Personal Hygeine (PH) is one of Sissy's goals. Apparently, she doesn't care to master that goal. Like, ever. Then, instead of greeting me, she was staring at the wall while she spoke, "Can we go to the mall?"
"Nope." That answer was easy to come up with. I was mad. Sissy and I have had several conversations about her PH and the fact that I travel a very long way to see her only a few short hours but I am always clean. I've rehearsed the play[1] that Katharine Leslie talks about and explained to Sissy that one way to demonstrate love is to be clean when you plan to spend time with someone. I've rehearsed the scene where you greet someone you haven't seen for awhile. We've been over this. A Lot. She's not a stupid girl. She refused to do her PH and greet me properly to see how I would respond. I didn't let her see my anger. I just said, "Nope." and announced my plan B as I got up and walked toward the van, leaving Sissy to figure out that she needed to follow me. I didn't offer to hug her hello or greet her properly in an effort to correct her. I didn't see the point.
As I dragged her around to do my errands, I talked to her about her goals. I pointed out that the other residents have new goals every week but she has had the same goals for four weeks. I asked her why she thought that was happening. She lied. "I don't have new goals." I said, "try again." She said, "ok. I'm not doing my goals."
BINGO!
I asked her how she expected to earn a ticket back home. She said, "do my goals."
BINGO!
I asked her what she planned to do about it. "I'm going to do my goals." So I said, "Great plan! Let's practice them right now!" *enter big cheesy grin*
Of course, she suddenly acted distracted, clueless and then got a mysterious pain in her neck that became so horrible she couldn't do anything else. "Gosh Sissy, you're karate is weak!" That got her goat. She managed to squeak out one dear man [2] statement that was an exact copy of the one I gave her. "So weak, your karate is!" and I feigned indifference. She tried again. Same exact statement. I just ignored her. She tried a third time, parrotting again. "A broken record!" I called out nonchalantly. "This from someone who is so smart!" Finally, she came up with a statement of value and I rewarded her with lots of hugs and kisses and high-fives. Then back to the horrible, unexplained pain in her neck with lots of lying about how her screaming to the staff was what strained her neck. I looked her dead in the eye, "This is when you say, 'mom, i'm anxious about you leaving soon.'"
She tried it out. "Does that feel right to you?" She nodded yes. I hugged her again. "I'll see you on the computer on Monday morning." No dice. She tried to fake me out with a huge, trumped up crying jag right in front of the Staff desk. Tears, jumping up and down and all. I just smiled and said, "Bye" and pushed her through the resident's door, the one that locks behind her. *enter devilish grin* At which point one of the staff, hearing her tirade jumped up and said, "Hey, is she O.K? I've NEVER seen her like that before!"
I just grinned at the staff, glad, relieved actually that someone FINALLY saw Sissy's nonsense and said, "Nope. She's fine. It's all an act, just for me."
The staff said, "You OK mom?"
"Oh, I'm fine. This is how it goes."
"She's never done that before!"
"Not for you, anyway."
Because until that moment, 42 days in, Sissy had yet to show them her behaviors (well, PH and refusing to do her goals, notwithstanding) Her lying, manipulating, anger, hysteria, 4 consecutive hours of screaming at the top of her lungs, all of it has always been exclusivley for me. But as I hoped, I pushed just the right buttons at just the right time to get her to be her true self in front of Staff. Score for Mom!
Today, a day later and after reflection, I don't really feel better. She's refusing to change, refusing to acknowledge that she is responsible for herself and her placement at the RTC. Apologize for the harm she did to the rest of her family? Yeah, right. Contrition? Nope. Restitution? Dream on. She spent the entire TL lying about whatever it was she felt the need to lie about, she tuned me out ALOT, she was spacey, distracted, it wasn't fun, at least not for me, anyway. I asked her what she thought about her placement. "Oh, I'm going to be here for a year and then I'll go home." She didnt' like my answer - No, my dear, you've got 120 days from insurance and if you're not better, when you come home, I'm going to make sure the rules for you are EXACTLY like it is here. *enter her glare of death for me with full eye contact to boot* (Why do they only make eye contact when you DON'T want them to? lol)
Tomorrow morning's video conference I'm going to spell it out for Sissy and the therapist. I'm not a happy mom. 120 days per insurance or not, Sissy is not welcome home if she isn't willing to change. And this momma isn't willing to travel 6 hours to visit her if she's going to look like a pig, be selfish, lie and refuse to acknowledge me in any meaningful way. Sissy just met the end of her rope. I know that RADishes have bad brain wiring. I get it. But that doesn't excuse Sissy from feigning ignorance and stupidity. Cause she's neither.
I called my friend that has a 19 year old RADish. "Tell me it's OK to not want my kid back." She's always sympathetic. "I've been there," she tells me, "and yes, it's OK to feel that way."
If you're reading this and praying for our family, please pray this pray with us:
Dear God, Please, PLEASE help Sissy see the need for change. Help Sissy face her giants. Give me (the Smith's) the strength to praise you if she changes and praise you if she doesn't. Nothing is impossible for you, not even RADs.
Amen
[1]I kept thinking about Katharine Leslie's "play" scenario - RADishes don't know the script to the play but we expect them to be the star. We have to coach them with the script until they can learn to improvise successfully based on patterning and practice. Leslie also says that RADishes don't know what is expected to them to show love, that parents need to personally assess what makes them feel like a relationship with their child is reciprocal. For me, Sissy being clean and greeting me with enthusiasm after I travel 3 hours to see her is MY need in the relationship. I've made that VERY clear to Sissy complete with lots of practice. At least MOM is doing her part. *pat self on back*
[2] dear man statment - "dear ---, I feel ---, when you ---, I want ---. How do you like my idea?"
(ie) Dear Mom, I feel happy and loved when you come to see me. I want you to do it more often. How do you like my idea?
Sissy and I actually rehearsed this one a couple of times before I gave her one more example and then asked her to make one on her own.
Facing the Giants linkeroo: http://www.facingthegiants.com/home.php
Friday, January 1, 2010
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