This took me a while to finally post, but this has had me laughing for weeks now.
It's absolutely right on.
Showing posts with label medication. Show all posts
Showing posts with label medication. Show all posts
Saturday, February 14, 2009
Tuesday, December 23, 2008
How Not To Write a Christmas Letter
This time of year, mailboxes everywhere are filling up with letters from our friends and relatives recapping their years. To a parent of a kid with special needs, or any child struggling, or any family struggling, these letters can be as painful and annoying as sciatica. Maybe I should speak only for myself. I find them to occassionally be as painful and annoying as not just sciatica, but as heartburn, canker sores, and blisters.
I should stop here, or at least pause, to say I do share in the victories of my friends and their kids. I guess I have a hard time with the comparison. Were I to write a Christmas letter, this or any year, it comes out sad and tragic and just not right. Perhaps it's just my writing style, or my intense need to be honest (should anyone ever ask me about it later, I need consistency), but I'm just not one of those people who can paint things in a light that is more cheery than things really appear.
My Christmas Letter, had I actually written one this year, would read thusly:
To my dear friends and family,
Here's hoping 2008 really is coming to an end soon, and let's hope and pray for a fabulous 2009. I hope that the celebrations of Christ's birth in your home and community are filled with peace and love, and if you don't believe in Jesus, I hope you have abundant peace and love too.
We've had quite the life changing year this year! The year began and only 5 days in, my mom's eye went out. As you may know, she has been blind in her right eye for the last 7 years, due to a series of retinal detachments. On January 5, her left retina detached and the surgery to repair it ended up permanently damaging the back of her eye, rendering her almost completely blind. I had essentially moved in the day she had surgery, to help her recoup, but then made it permanent somewhere around March, when we knew that her vision would never recover. The rest of the year for her has been spent relearning how to negotiate the world, and with the help of my awesome sisters and my mom's generous friends, she is doing very well. I tell everyone who asks about her, she's exactly the same, her health is still fine, she just can't see you if you sneak into a room.
So, I moved back in to my childhood home. It's a nice home, I have no complaints. My cat certainly likes it more than she liked our old place, there are more windows and hiding places. I've always loved my bedroom, with its south and east facing windows.
The Kid had a comeback this year that would put Shatner to shame. He started the year in the throes of antipsychotic withdrawals, which lasted until the better part of April or May. I got sick of his weight gain, drooling, bedwetting and continued erratic behavior and told his psychiatrist he was going off of the meds. The Kid dropped from 15 mgs of Abilify to none in 9 months, dropped tenex and depakote without much down-titration (and without ill effects really, it's the abilify that was the bitch for him to lick). While going off of the meds, I tried to engage the help of the psychiatric community, but they all told me to put him back on the meds. I went completely against medical advice, and was right. After he had the meds leave his body, he dropped approximately 50 pounds, his violent and aggressive behavior generally stopped, his motor skills improved, he slept through the night, he engaged at home more willingly, he began to participate in academics more fully, he became capable of participating in group activities at school, he could make it through a day, then a week, then a month without aggression, without outward difficult behavior. We fought hard to add occupational therapy and assistive technology to his IEP, and won.
To anyone who has ever poo-pooed mother's intuition: Go suck it, I was right on every single point. Vindication is the word of my year. That, and eyeball.
So, The Kid was officially rediagnosed with Asperger's in April, bringing on the official autism spectrum disorder diagnosis I'd inexplicably put off for several years. With it comes a new slew of therapies that are on the slate for 2009, most notably occupational and vision therapy. He is getting more one on one work at school on social thinking processes, and my approach to helping him has grown in innumerable ways.
This fall he went back to school and has been an absolute success over last year. His problematic behaviors gone, we've been able to concentrate on a number of core issues and challenges, most notably sensory integration, handwriting, reading, and understanding other's social intent. He's making some progress, and our hope is that before the end of the school year, he will move into a less restrictive classroom environment inside of a general educational setting, so that maybe he can meet some kids who live nearby, and maybe he can begin to make some friends. It's exciting, and terrifying.
I spent a great deal of the year in career limbo. My boss quit his job, leaving me alone for a full 9 months before my company realized I was sitting there day after day with little to nothing to do. I've been reassigned and I'm busy and hassled and annoyed again, and with the economy the way it is, I've never been more grateful to say I have a job, even if it annoys the ever-living crap out of me 90% of the time.
Personally I've been in a deep dark hole and for the most part I've been inside my own head so much I barely recognize the outside world. I wouldn't say I was depressed, because I know people who get depressed and I just think I'm chemically incapable of being depressed. God knows I would have refused psychiatric medications anyway. I am held up by my family, my amazing and loving inspriration of a child, my sisters who are my best friends, my best friends who are like sisters (and brothers), and I guess, I world of hope and a deep-seeded belief that I'm at this for one reason or other, which will only be elucidated after a long life. I'm doing okay. You move back into your mom's house at 32 and tell me you would be all, "MY LIFE FUCKING ROCKS! I'M AWESOME!" you know?
Anyway, hope you get some good loot for the holidays, but more importantly, you get the opportunity to tell someone that you love them, and that you have the luck to be told that you are loved back.
Much love,
Molla
I should stop here, or at least pause, to say I do share in the victories of my friends and their kids. I guess I have a hard time with the comparison. Were I to write a Christmas letter, this or any year, it comes out sad and tragic and just not right. Perhaps it's just my writing style, or my intense need to be honest (should anyone ever ask me about it later, I need consistency), but I'm just not one of those people who can paint things in a light that is more cheery than things really appear.
My Christmas Letter, had I actually written one this year, would read thusly:
To my dear friends and family,
Here's hoping 2008 really is coming to an end soon, and let's hope and pray for a fabulous 2009. I hope that the celebrations of Christ's birth in your home and community are filled with peace and love, and if you don't believe in Jesus, I hope you have abundant peace and love too.
We've had quite the life changing year this year! The year began and only 5 days in, my mom's eye went out. As you may know, she has been blind in her right eye for the last 7 years, due to a series of retinal detachments. On January 5, her left retina detached and the surgery to repair it ended up permanently damaging the back of her eye, rendering her almost completely blind. I had essentially moved in the day she had surgery, to help her recoup, but then made it permanent somewhere around March, when we knew that her vision would never recover. The rest of the year for her has been spent relearning how to negotiate the world, and with the help of my awesome sisters and my mom's generous friends, she is doing very well. I tell everyone who asks about her, she's exactly the same, her health is still fine, she just can't see you if you sneak into a room.
So, I moved back in to my childhood home. It's a nice home, I have no complaints. My cat certainly likes it more than she liked our old place, there are more windows and hiding places. I've always loved my bedroom, with its south and east facing windows.
The Kid had a comeback this year that would put Shatner to shame. He started the year in the throes of antipsychotic withdrawals, which lasted until the better part of April or May. I got sick of his weight gain, drooling, bedwetting and continued erratic behavior and told his psychiatrist he was going off of the meds. The Kid dropped from 15 mgs of Abilify to none in 9 months, dropped tenex and depakote without much down-titration (and without ill effects really, it's the abilify that was the bitch for him to lick). While going off of the meds, I tried to engage the help of the psychiatric community, but they all told me to put him back on the meds. I went completely against medical advice, and was right. After he had the meds leave his body, he dropped approximately 50 pounds, his violent and aggressive behavior generally stopped, his motor skills improved, he slept through the night, he engaged at home more willingly, he began to participate in academics more fully, he became capable of participating in group activities at school, he could make it through a day, then a week, then a month without aggression, without outward difficult behavior. We fought hard to add occupational therapy and assistive technology to his IEP, and won.
To anyone who has ever poo-pooed mother's intuition: Go suck it, I was right on every single point. Vindication is the word of my year. That, and eyeball.
So, The Kid was officially rediagnosed with Asperger's in April, bringing on the official autism spectrum disorder diagnosis I'd inexplicably put off for several years. With it comes a new slew of therapies that are on the slate for 2009, most notably occupational and vision therapy. He is getting more one on one work at school on social thinking processes, and my approach to helping him has grown in innumerable ways.
This fall he went back to school and has been an absolute success over last year. His problematic behaviors gone, we've been able to concentrate on a number of core issues and challenges, most notably sensory integration, handwriting, reading, and understanding other's social intent. He's making some progress, and our hope is that before the end of the school year, he will move into a less restrictive classroom environment inside of a general educational setting, so that maybe he can meet some kids who live nearby, and maybe he can begin to make some friends. It's exciting, and terrifying.
I spent a great deal of the year in career limbo. My boss quit his job, leaving me alone for a full 9 months before my company realized I was sitting there day after day with little to nothing to do. I've been reassigned and I'm busy and hassled and annoyed again, and with the economy the way it is, I've never been more grateful to say I have a job, even if it annoys the ever-living crap out of me 90% of the time.
Personally I've been in a deep dark hole and for the most part I've been inside my own head so much I barely recognize the outside world. I wouldn't say I was depressed, because I know people who get depressed and I just think I'm chemically incapable of being depressed. God knows I would have refused psychiatric medications anyway. I am held up by my family, my amazing and loving inspriration of a child, my sisters who are my best friends, my best friends who are like sisters (and brothers), and I guess, I world of hope and a deep-seeded belief that I'm at this for one reason or other, which will only be elucidated after a long life. I'm doing okay. You move back into your mom's house at 32 and tell me you would be all, "MY LIFE FUCKING ROCKS! I'M AWESOME!" you know?
Anyway, hope you get some good loot for the holidays, but more importantly, you get the opportunity to tell someone that you love them, and that you have the luck to be told that you are loved back.
Much love,
Molla
Tuesday, December 02, 2008
Internal Debate
Me: I think I'm going to kill Soapy Water.
Me: But you love Soapy Water. You at least have to keep the archives!
Me: But the archives make me want to cringe. All that bloviating about the "idiots" at The Kid's schools, all the "thank God for psychiatric medications..." It's just a big emblem of the wrong path, the lost years...
Me: And yet, that's what got you and The Kid here.
Me: But where are we? Who wants to read about it?
Me: You know people will read it, the people who love you will.
Me: Yeah, we can't all be as famous as Mr. Lady. But the posts aren't coming out any more. I'm too self aware. I've lost that voice, I've certainly lost all semblance of hip-mom that seems to be prerequisite for mom-blogging.
Me: Dude, you were never "hip."
Me: True. But I thought I was. I have lost something. I can't describe it. And I'm suddenly gunshy. I can't be as opinionated as I once was, ever since every assertion I made about The Kid being bipolar turned out to be The Kid reacting poorly to the meds he was on, not at all bipolar.
Me: Yeah, and then the Asperger's Diagnosis.
Me: Autism Spectrum. I'm a newbie. I'm at a loss. I don't know anything, I'm fumbling around in the dark with what to do. And then there's the fear that just because the Asperger's fits today, it all makes some sense, I know in my heart of hearts I made bipolar fit, like a world view to help me fight. What if I'm wrong about this one too?
Me: But you read the books and you see those similarities. Your friends, all their stories. The years where he didn't sleep, even without meds screwing up his circadian rythyms, the hard times with haircuts and dentists, the vocal self-stimulatory behavior, the narrow interests, the hyper-focus, the social stuff, the sensory stuff. And don't forget the approach.
Me: The approach to Asperger's is the thing that makes me confident in his treatment, that's for sure. If the child is acting out, or seeking sensory stimuli, to what aim? What is the root cause of the behavior? Isn't that the best question ever?
Me: It's my favorite. After years and years of "if he's acting out, let's increase his dosage another .5 miligrams." I think you need to leave the old behind and start a new chapter. Part II of sorts, without moving the actual website, or so I hear...
Me: Part II. I guess it's worth a try. I can't promise anything.
Me: But you love Soapy Water. You at least have to keep the archives!
Me: But the archives make me want to cringe. All that bloviating about the "idiots" at The Kid's schools, all the "thank God for psychiatric medications..." It's just a big emblem of the wrong path, the lost years...
Me: And yet, that's what got you and The Kid here.
Me: But where are we? Who wants to read about it?
Me: You know people will read it, the people who love you will.
Me: Yeah, we can't all be as famous as Mr. Lady. But the posts aren't coming out any more. I'm too self aware. I've lost that voice, I've certainly lost all semblance of hip-mom that seems to be prerequisite for mom-blogging.
Me: Dude, you were never "hip."
Me: True. But I thought I was. I have lost something. I can't describe it. And I'm suddenly gunshy. I can't be as opinionated as I once was, ever since every assertion I made about The Kid being bipolar turned out to be The Kid reacting poorly to the meds he was on, not at all bipolar.
Me: Yeah, and then the Asperger's Diagnosis.
Me: Autism Spectrum. I'm a newbie. I'm at a loss. I don't know anything, I'm fumbling around in the dark with what to do. And then there's the fear that just because the Asperger's fits today, it all makes some sense, I know in my heart of hearts I made bipolar fit, like a world view to help me fight. What if I'm wrong about this one too?
Me: But you read the books and you see those similarities. Your friends, all their stories. The years where he didn't sleep, even without meds screwing up his circadian rythyms, the hard times with haircuts and dentists, the vocal self-stimulatory behavior, the narrow interests, the hyper-focus, the social stuff, the sensory stuff. And don't forget the approach.
Me: The approach to Asperger's is the thing that makes me confident in his treatment, that's for sure. If the child is acting out, or seeking sensory stimuli, to what aim? What is the root cause of the behavior? Isn't that the best question ever?
Me: It's my favorite. After years and years of "if he's acting out, let's increase his dosage another .5 miligrams." I think you need to leave the old behind and start a new chapter. Part II of sorts, without moving the actual website, or so I hear...
Me: Part II. I guess it's worth a try. I can't promise anything.
Sunday, June 22, 2008
Changing the Byline
I've been wrestling with a decision in regards to this blog. This post has been germinating since April, when The Kid was re-diagnosed: the bipolar diagnosis was dropped, Aspergers was added, and the ADHD, prominent as ever, remained. I've dreamed that this blog is a signpost for some mother, out there in the middle of the night, googling for answers to her questions about her little kid, who can't function in school, who has temper tantrums way beyond what she'd ever expect of a child before she experienced them, and had been given an indication that these troubles with her child were not from shitty parenting, but from something psychiatric, neurological, brain-based. I could never truly be a guide or an expert, but I've hoped to provide a comforting beacon, You aren't alone.
I don't want that beacon to stop shining, but I want so badly to erase The Kid's history of being considered bipolar from the face of the earth. He was so wronged by being given that diagnosis, and the medications that go with it. I want to irradicate the notion that my child was unrecoverable, as conventional wisdom considers bipolar a life-long struggle, one that is viewed by many as only treatable by medication. I took the advice, and gave him the meds, and we started a spiral of violent behavior and school struggle and weight gain, until the pictures I took of The Kid, his face swolen and heavy, his moody depression and way-too-early-cynicism rendered him almost unrecognizable. I couldn't believe this was it, that my boy was this person, was going to remain this person, and was going to grow into the teen and the adult that would constantly bring me trouble: spending too much, drinking or doing drugs, police reports: when I looked to the future, it was bleak.
I finally cocked my guns and went into the psychiatrist and told her I was done with medications. I wanted to see him off of them. It took so long to recover, it got worse before it got better, and if there is one thing I want my beacon to say to the late night googlers: Anti-psychotics cause withdrawals that make the withdraw-er psychotic. Bipolar. It takes months for the effects to go away. So next time you hear of someone crazy who's gone off of their meds recently, keep in mind that this is not necessarily proof that the person really is crazy and needs the medication, but proof that the drug is leaving the body. For us, it took about 45 ugly days from his last dose to see my baby again.
It sounds strange, but the official autism spectrum disorder diagnosis, the Asperger's, was greeted as good news to me. Autism, while horribly disabling and lifelong, comes with strategies we'd not tried before. There is recovery, and recovery that isn't entirely dependent upon medications. I know so many moms of kids with Autism that would think I'm nuts for saying that, but after being where we've been Asperger's is like a big glass of ice water on a hot day: not like we'd never be thirsty again, but refreshing for now.
And so, the byline to this blog is changing. The Kid is not Bipolar. He still hasn't come out of the cookie cutter, but now when I look into the future, it's just as foggy, and I still have concern, but it isn't as bleak.
I don't want that beacon to stop shining, but I want so badly to erase The Kid's history of being considered bipolar from the face of the earth. He was so wronged by being given that diagnosis, and the medications that go with it. I want to irradicate the notion that my child was unrecoverable, as conventional wisdom considers bipolar a life-long struggle, one that is viewed by many as only treatable by medication. I took the advice, and gave him the meds, and we started a spiral of violent behavior and school struggle and weight gain, until the pictures I took of The Kid, his face swolen and heavy, his moody depression and way-too-early-cynicism rendered him almost unrecognizable. I couldn't believe this was it, that my boy was this person, was going to remain this person, and was going to grow into the teen and the adult that would constantly bring me trouble: spending too much, drinking or doing drugs, police reports: when I looked to the future, it was bleak.
I finally cocked my guns and went into the psychiatrist and told her I was done with medications. I wanted to see him off of them. It took so long to recover, it got worse before it got better, and if there is one thing I want my beacon to say to the late night googlers: Anti-psychotics cause withdrawals that make the withdraw-er psychotic. Bipolar. It takes months for the effects to go away. So next time you hear of someone crazy who's gone off of their meds recently, keep in mind that this is not necessarily proof that the person really is crazy and needs the medication, but proof that the drug is leaving the body. For us, it took about 45 ugly days from his last dose to see my baby again.
It sounds strange, but the official autism spectrum disorder diagnosis, the Asperger's, was greeted as good news to me. Autism, while horribly disabling and lifelong, comes with strategies we'd not tried before. There is recovery, and recovery that isn't entirely dependent upon medications. I know so many moms of kids with Autism that would think I'm nuts for saying that, but after being where we've been Asperger's is like a big glass of ice water on a hot day: not like we'd never be thirsty again, but refreshing for now.
And so, the byline to this blog is changing. The Kid is not Bipolar. He still hasn't come out of the cookie cutter, but now when I look into the future, it's just as foggy, and I still have concern, but it isn't as bleak.
Tuesday, April 29, 2008
Atypical Nation: Soapy Water Version
I kind of feel like someone’s dropped by and I have curlers in my hair and my kitchen is a mess. All I’ve had up on this blog for the last month is a quickly written musing about The Kid's lovely nose-picking…
Today, Philip Dawdy of Furious Seasons has linked over to me. Philip is a journalist and mental health advocate who was instrumental in planting the seeds of skepticism in some of the advice I’d been receiving on how to help The Kid with his difficulties in school, primarily in the realm of the medications he was being prescribed, primarily the atypical anti-psychotics.
The Kid took his last dose of Abilify in January. Philip has shared our recent success, and my strong belief that The Kid’s so-called bipolar diagnosis was an effect of medication side effects and bad diagnostics more than actual baseline functioning by him; and a rush to react to his behavior (in school, mostly) rather than find the underlying causes.
The Kid has been doing really well. It took about two months to really lift the fog of rage and aggression at school. At this time I can confidently state that I do not see so-called “mood” issues, and neither does the school.
I am pissed about the damage that has been done to my son over the past two years, the atypical years, and the slew of bad advice that I’ve received since I first went to his pediatrician to tell them about my concerns about his development, his hypersensitivity to sound, environment and food. I am pissed that I am complicit. I am pissed that these years have engendered bad habits in my son, I’m pissed that even though we’ve ironed out this ‘bipolar’ thing that he remains challenged, disabled.
That’s the problem. And I’m scared of being linked to by Philip because many of his readers have grown so skeptical of psychiatry and psychology in general that they find it impossible to believe that any child can be disabled, have developmental delays, have a mental illness. I do not need that wrath right now.
If someone were to spend an afternoon with my son and I, they would see a really extraordinary child, but one who does not fit within anyone’s definition of a typically developed kid. Perhaps we will see further improvement over time as the atypicals slowly leave his fat cells (the last place that I understand they cling to… Which is ironic, because one main side effects of the atypical antipsychotic class of medication is severe weight gain… Talk about poisoning over poisoning, and then making it even harder to get off of these medications), his motor skills might improve, maybe we’ll see his social skills improve too. Only time will tell.
The Kid’s just gone through a new set of assessments, to cement his diagnosis of ADHD, and to further explore where he fits on the Autism spectrum. These things do exist, my son will need special education and constant support for the foreseeable future. I just think there are a lot of very careless practitioners out there, and parents, who are not entirely careless, but instead are overly trusting of these practitioners. I also think doctors would do well to spend more time to listen, truly listen, TRULY LISTEN to parents. I also wish schools didn’t suck so very much, but that’s a post for another day.
Anyway, thanks Philip. Your support has meant a lot to me.
Today, Philip Dawdy of Furious Seasons has linked over to me. Philip is a journalist and mental health advocate who was instrumental in planting the seeds of skepticism in some of the advice I’d been receiving on how to help The Kid with his difficulties in school, primarily in the realm of the medications he was being prescribed, primarily the atypical anti-psychotics.
The Kid took his last dose of Abilify in January. Philip has shared our recent success, and my strong belief that The Kid’s so-called bipolar diagnosis was an effect of medication side effects and bad diagnostics more than actual baseline functioning by him; and a rush to react to his behavior (in school, mostly) rather than find the underlying causes.
The Kid has been doing really well. It took about two months to really lift the fog of rage and aggression at school. At this time I can confidently state that I do not see so-called “mood” issues, and neither does the school.
I am pissed about the damage that has been done to my son over the past two years, the atypical years, and the slew of bad advice that I’ve received since I first went to his pediatrician to tell them about my concerns about his development, his hypersensitivity to sound, environment and food. I am pissed that I am complicit. I am pissed that these years have engendered bad habits in my son, I’m pissed that even though we’ve ironed out this ‘bipolar’ thing that he remains challenged, disabled.
That’s the problem. And I’m scared of being linked to by Philip because many of his readers have grown so skeptical of psychiatry and psychology in general that they find it impossible to believe that any child can be disabled, have developmental delays, have a mental illness. I do not need that wrath right now.
If someone were to spend an afternoon with my son and I, they would see a really extraordinary child, but one who does not fit within anyone’s definition of a typically developed kid. Perhaps we will see further improvement over time as the atypicals slowly leave his fat cells (the last place that I understand they cling to… Which is ironic, because one main side effects of the atypical antipsychotic class of medication is severe weight gain… Talk about poisoning over poisoning, and then making it even harder to get off of these medications), his motor skills might improve, maybe we’ll see his social skills improve too. Only time will tell.
The Kid’s just gone through a new set of assessments, to cement his diagnosis of ADHD, and to further explore where he fits on the Autism spectrum. These things do exist, my son will need special education and constant support for the foreseeable future. I just think there are a lot of very careless practitioners out there, and parents, who are not entirely careless, but instead are overly trusting of these practitioners. I also think doctors would do well to spend more time to listen, truly listen, TRULY LISTEN to parents. I also wish schools didn’t suck so very much, but that’s a post for another day.
Anyway, thanks Philip. Your support has meant a lot to me.
Sunday, January 27, 2008
In real life, I really do say Dude this often.
Question: Gee, Molly, you've been notably absent from the internets lately. I mean, you've been logging in to facebook to play scrabble and whatnot, but no blog posts. What gives?
Answer: Dude. So much is going on. Too much, in fact.
Question: Like what? A fabulous vacation? A new hunky love interest?
Answer: No, dude. It's like I've traveled back in time to that one time The Kid was going to hospital school and my mom had eye surgery. Remember? I'm saying this because these exact things are going on right now. Again.
Question: Dude.
Answer: I know! But, apart from my mom and her retinal detachment (which we believe is going to be fine, she's just not seeing all that well yet, so we've moved house and home and cat over to her house to make her coffee and clean her house and wrestle in her bathroom*), this is all ultimately for good, and will have good results.
Question: So, putting The Kid in the hospital for school is a good thing?
Answer: Absolutely! His school was just about up to their ears in The Kid's horrible, difficult mood that is a direct result of his withdrawal from the biggest mistake I've ever made as a parent, Abilify (a psychiatric drug which is supposed to make children with various psychiatric and developmental disabled diagnoses less self-injurous and labile, but in The Kid did, um, nothing except make him gain 50 pounds). So, he was slowly going off of this med, and believe me he is not a dream to be with those first 7 days after a lower dose, and the school is on their last nerve, and while I agree they had every right to complain, they were kind of out of ideas for new interventions... Or at least, they weren't taking my suggestions and don't want to shell out the money for a 1 to 1 paraeducator for The Kid. Also, the class is too big and the teachers are stressed. Yes, it's all true. However, The Kid was not in the classroom for more than 70% of his days, and I just decided that he needed to finish out his last withdrawal period (HE'S DONE WITH THE ABILIFY!) and he needs to be assessed by the best. We need some new recommendations for helping him with his social skills, we need some new recommendations for how to help him focus when he avoids doing his work (we need to figure out what's going on in head that makes him avoid doing his work, first of all), we need to figure out why he behaves like a holy terror in school but not at home, we need to meet with someone regarding diet and supplements, and/or other alternative therapies (yes, the hospital actually has a clinic specializing in these things ready to meet with us and make recommendations. I may just be gluten free shortly, dude.). Most importantly, we need to see what he's really like without being given atypical anti-psychotics.
Question: Will he look different?
Answer: Well, physically, he's already lost three pounds. I do suspect we'll see different behavior. What it will look like, and how we should deal with it now that I've made my decision regarding certain medications, I do not know.
Question: Anything else going on?
Answer: Not really. I'm taking care of my mom, who rocks, taking care of The Kid, who also rocks, driving a lot (because they moved the hospital 20 miles further from home), which sucks, taking partial FML to do all of this, which also sucks but also, secretly, kind of doesn't suck. Seriously, a 30 hour week is just about ideal for a working mother. I can work, cook AND clean. Anyway, this doesn't leave me much time to do much of anything else, short of scrabble on facebook. Oh, except that I met about 40 other moms like me and I joined a supersecret club, but really that's just my business and not the business of the internets. However, if any of them read this, Hi. I'm so glad I found you.
The End.
*That would be The Kid and I. My mom isn't so much into the wrastling these days. Or any days.
Answer: Dude. So much is going on. Too much, in fact.
Question: Like what? A fabulous vacation? A new hunky love interest?
Answer: No, dude. It's like I've traveled back in time to that one time The Kid was going to hospital school and my mom had eye surgery. Remember? I'm saying this because these exact things are going on right now. Again.
Question: Dude.
Answer: I know! But, apart from my mom and her retinal detachment (which we believe is going to be fine, she's just not seeing all that well yet, so we've moved house and home and cat over to her house to make her coffee and clean her house and wrestle in her bathroom*), this is all ultimately for good, and will have good results.
Question: So, putting The Kid in the hospital for school is a good thing?
Answer: Absolutely! His school was just about up to their ears in The Kid's horrible, difficult mood that is a direct result of his withdrawal from the biggest mistake I've ever made as a parent, Abilify (a psychiatric drug which is supposed to make children with various psychiatric and developmental disabled diagnoses less self-injurous and labile, but in The Kid did, um, nothing except make him gain 50 pounds). So, he was slowly going off of this med, and believe me he is not a dream to be with those first 7 days after a lower dose, and the school is on their last nerve, and while I agree they had every right to complain, they were kind of out of ideas for new interventions... Or at least, they weren't taking my suggestions and don't want to shell out the money for a 1 to 1 paraeducator for The Kid. Also, the class is too big and the teachers are stressed. Yes, it's all true. However, The Kid was not in the classroom for more than 70% of his days, and I just decided that he needed to finish out his last withdrawal period (HE'S DONE WITH THE ABILIFY!) and he needs to be assessed by the best. We need some new recommendations for helping him with his social skills, we need some new recommendations for how to help him focus when he avoids doing his work (we need to figure out what's going on in head that makes him avoid doing his work, first of all), we need to figure out why he behaves like a holy terror in school but not at home, we need to meet with someone regarding diet and supplements, and/or other alternative therapies (yes, the hospital actually has a clinic specializing in these things ready to meet with us and make recommendations. I may just be gluten free shortly, dude.). Most importantly, we need to see what he's really like without being given atypical anti-psychotics.
Question: Will he look different?
Answer: Well, physically, he's already lost three pounds. I do suspect we'll see different behavior. What it will look like, and how we should deal with it now that I've made my decision regarding certain medications, I do not know.
Question: Anything else going on?
Answer: Not really. I'm taking care of my mom, who rocks, taking care of The Kid, who also rocks, driving a lot (because they moved the hospital 20 miles further from home), which sucks, taking partial FML to do all of this, which also sucks but also, secretly, kind of doesn't suck. Seriously, a 30 hour week is just about ideal for a working mother. I can work, cook AND clean. Anyway, this doesn't leave me much time to do much of anything else, short of scrabble on facebook. Oh, except that I met about 40 other moms like me and I joined a supersecret club, but really that's just my business and not the business of the internets. However, if any of them read this, Hi. I'm so glad I found you.
The End.
*That would be The Kid and I. My mom isn't so much into the wrastling these days. Or any days.
Wednesday, January 09, 2008
All you need is an hour and an internet connection!
Please follow this link and watch the Frontline documentary, "The Medicated Child." I offer it without comment. Please do watch it and let me know what you think.
Friday, January 04, 2008
how could so many docs be soo wrong?
Quickly, and from work.
The NY Times has an article up today about how the use of antipsychotics is not proven to reduce irritability and aggressive and violent behavior in people with developmental disabilities and the elderly, as it has been widely, and off-label, prescribed. The study blows up the assumption that these drugs help, at all, not to mention their addition of troublesome side effects such as weight gain, diabetes, tardive dyskenesia. The drugs used in the study were Risperdal and Haldol, but the study concludes that the entire class of anti-psychotics can be brought to the same conclusions.
How could so many people get this so horribly wrong? Greed? Why were such studies not conducted before this? Before the Zyprexa lawsuits and my own son's 50 pound weight gain and absolutely no reduction in troublesome behavior? It kind of makes me sick.
The NY Times has an article up today about how the use of antipsychotics is not proven to reduce irritability and aggressive and violent behavior in people with developmental disabilities and the elderly, as it has been widely, and off-label, prescribed. The study blows up the assumption that these drugs help, at all, not to mention their addition of troublesome side effects such as weight gain, diabetes, tardive dyskenesia. The drugs used in the study were Risperdal and Haldol, but the study concludes that the entire class of anti-psychotics can be brought to the same conclusions.
But the routine prescription of the drugs for aggression, they concluded, “should no longer be regarded as a satisfactory form of care.”
How could so many people get this so horribly wrong? Greed? Why were such studies not conducted before this? Before the Zyprexa lawsuits and my own son's 50 pound weight gain and absolutely no reduction in troublesome behavior? It kind of makes me sick.
Wednesday, December 12, 2007
Okay, Okay, I'm done being done.
Kind of. I can't promise anything.
Because I'm a corporate drone, let's update with bullet points. I've been a citizen of a corporation so long, that when I am in a hurry, I just naturally gravitate towards the bullet point. This is officially the death of the grad student inside of me. Goodbye, longwinded narrative prose. Goodbye soul.
Because I'm a corporate drone, let's update with bullet points. I've been a citizen of a corporation so long, that when I am in a hurry, I just naturally gravitate towards the bullet point. This is officially the death of the grad student inside of me. Goodbye, longwinded narrative prose. Goodbye soul.
- Have you ever seen that Office where Michael tells the office that they are getting laid off, make fabulous plans for the future, are excited about the change, and then find out they aren't getting laid off in the end and feel totally deflated as a result? That was me last week. I still have my job. Whoopee.
- I fully realize how whiny that statement is. A lot of people would like to have jobs.
- My boss's last day, however, is December 31. I am incredibly sad about this fact. He is one of the few things I truly love about my job.
- The Kid's down-titration of meds is causing some major behavior issues. Or perhaps it is the fact that he's really obsessed with Christmas and isn't sleeping.
- The Kid's doctor is still certain that we drop meds without adding anything else. Issues will sort themselves out.
- I very reasonably and calmly informed the school of what's going on with the meds, and although they were initially very against the dropping of meds, I've gotten them to understand the impetus to do so, and how very vital it is to the health of The Kid to do so, although they still don't see that we had periods like this with the meds too, because we all think in frameworks and cause and effect of the easiest identifiable thing.
- We meet tomorrow afternoon to discuss how best to handle the behaviors we're seeing.
- They assure me they are not talking about a change of placement. I realize how fucked in the head I am still from the previous school's inability to create behavior plans and follow IEP's, because I find it hard to believe that they are this professional and willing to work with me to keep The Kid in school, to keep him safe, and to get him learning instead of spending time outside of the classroom calming down from anger.
Okay, I have to go to work. It also snowed like crazy this week and remained below freezing so driving sucks right now. I really hate snow. I'm not over last winter. I am dreaming of Hawaii.
Monday, November 19, 2007
Quickie News Roundup
There's been another explosion in our newspapers lately about the prevalence in ADHD in our kids. I read one staggering figure, that one in ten boys in the US is taking some kind of medication for ADHD symptoms. That's a lot of kids. That's a lot of medicine. That's a lot of money.
Anyway, I believe this was brought on by a recently released study showing the academic acheivement of children with ADHD, which is below the 'typical' child at the start of elementary school, generally catches up to the general population by 6th grade. This is interesting on so many levels, and encouraging for me on many others. Principally, it promotes the view that ADHD is not necessarily a mental illness, but a developmental delay. A maturity delay. For me, that worldview is a big deal. That the medical community is catching on to this and may change methods of treatment is exciting.
Reading around about the issue, I stumbled upon this op-ed/article in The Times out of the UK. The thesis, basically, is that we have forced our children into structure so early, that some are incapable of handling it, hence, ADHD. She comes at it from a kind of anthropologically Marxist kind of view, that as culture has become more technological, and as our culture has become an environment to excel and succeed in skyskrapers rather than as hunter-gatherers or even as farmers, we have alienated the boys of the world from access to what they need most: a good wrastle, risk-taking behaviors away from the eyes of overanxious moms, and a day spent less fearful and more exhuberant. It's an interesting way to see things, mostly because it is the antithesis of the message I get as a mom of one of these 'disturbed children' (you should be more stern with him, he needs more structure and discipline). Instead, her point of view says, boys will be boys. Let them be boys.
Anyway, I believe this was brought on by a recently released study showing the academic acheivement of children with ADHD, which is below the 'typical' child at the start of elementary school, generally catches up to the general population by 6th grade. This is interesting on so many levels, and encouraging for me on many others. Principally, it promotes the view that ADHD is not necessarily a mental illness, but a developmental delay. A maturity delay. For me, that worldview is a big deal. That the medical community is catching on to this and may change methods of treatment is exciting.
Reading around about the issue, I stumbled upon this op-ed/article in The Times out of the UK. The thesis, basically, is that we have forced our children into structure so early, that some are incapable of handling it, hence, ADHD. She comes at it from a kind of anthropologically Marxist kind of view, that as culture has become more technological, and as our culture has become an environment to excel and succeed in skyskrapers rather than as hunter-gatherers or even as farmers, we have alienated the boys of the world from access to what they need most: a good wrastle, risk-taking behaviors away from the eyes of overanxious moms, and a day spent less fearful and more exhuberant. It's an interesting way to see things, mostly because it is the antithesis of the message I get as a mom of one of these 'disturbed children' (you should be more stern with him, he needs more structure and discipline). Instead, her point of view says, boys will be boys. Let them be boys.
Saturday, November 17, 2007
How is The Kid doing, anyway?
So, this is supposed to be a blog about The Kid. My Kid. Because of the persistent blogging this month, and because I'm normally getting my post done at ten til midnight every night, I've not taken the time to update on The Kid in quite a while.
First, academically. Great. His reading is on par, he's a little easily distracted, so it's slow going, but he understands everything he reads. He rocks at math. I've never really had concerns about his academics because he's just so naturally bright. If he doesn't get it today, he'll get it pretty soon.
His behavior at school is a different story. He's had a rough go of it lately. He has such a hard time in the classroom. I don't know what is going on. He gets stuck on ideas and tasks most of the time, and then the class has to move on, and he's not willing to go with them. I think that, essentially, is the deal. His reactions are all over the place. Most of the time, he gets so frustrated and angry he has to take space to calm down again. I don't think he's missing too much school time, but he has to go through this 'leave the classroom' thing about three to eight times a day. It's been rough.
I don't know how to make it better. It's school. It's kind of outside of my realm, if you know what I mean. I will help them in any way, but when it comes to how he reacts to their structures, I can't do much from work or home. Or, more than we already do, which is talk about the day, every night, and do lots of work with doctors and therapists outside of school. So, it's not like I'm doing nothing, but in the moment? It's up to The Kid.
Medically, well. Oooph. Six weeks ago he had a blood draw at the doctors office. Everything was okay, but his cholesterol levels were high. Yeah, he's seven. We've cut back on fats, for him and for me, and the food I have been preparing for both of us has been more healthy. We went again last week and his numbers are better, now on the high side of 'normal.' The doc is worried that the real culprit, however, is the weight gain and his metabolism from his meds. We are cutting back on his atypical antipsychotic, Abilify, slowly but surely until we will be done with it, hopefully by the end of the year or at the very latest, January. This is all good news to me, as I've been asking for a good justification for his taking it for about three months now. So glad to get this drug out of his system.
The Kid's therapist let a bad 'by the by' comment slip to me on Monday, however. He said he'd talked to the school, and, his words, "they are really against dropping meds." Naturally, they would be against dropping meds that worked to relieve aggressive behaviors. I would too. But these meds are not working very well against his aggression and frustration (see above, he's been on them with these cycles of anger and difficulty remaining safe in the classroom), and they are making him gain weight in a gross way (8 pounds in six weeks, on a good diet). I really wish he hadn't told me that. I really don't want to know what the school thinks about The Kid's medical info.
Of course I updated the school on the status of The Kid's meds, and now I worry that they will be pointing toward his behavior as caused by his meds being dropped. We're all keeping a close eye on him, and he is definitely going to have some difficulty while we take them out of his system. It may take the rest of the school year, in fact, to truly see a Kid without Abilify. I just can't let it go on that we feed him with this med that is not proving to work, that is pretty much definitely causing damage to his body (weight gain). It would be immoral of me.
So, in the meantime, the only real effect of lowering the dosage of the med I've seen (we've only cut the dosage back by 1/3, and it's only been five days) is difficulty falling asleep. He has been pretty much the same, easily overstimulated but incredibly funny and smart kiddo. I can live with this kiddo. He's a great kid.
First, academically. Great. His reading is on par, he's a little easily distracted, so it's slow going, but he understands everything he reads. He rocks at math. I've never really had concerns about his academics because he's just so naturally bright. If he doesn't get it today, he'll get it pretty soon.
His behavior at school is a different story. He's had a rough go of it lately. He has such a hard time in the classroom. I don't know what is going on. He gets stuck on ideas and tasks most of the time, and then the class has to move on, and he's not willing to go with them. I think that, essentially, is the deal. His reactions are all over the place. Most of the time, he gets so frustrated and angry he has to take space to calm down again. I don't think he's missing too much school time, but he has to go through this 'leave the classroom' thing about three to eight times a day. It's been rough.
I don't know how to make it better. It's school. It's kind of outside of my realm, if you know what I mean. I will help them in any way, but when it comes to how he reacts to their structures, I can't do much from work or home. Or, more than we already do, which is talk about the day, every night, and do lots of work with doctors and therapists outside of school. So, it's not like I'm doing nothing, but in the moment? It's up to The Kid.
Medically, well. Oooph. Six weeks ago he had a blood draw at the doctors office. Everything was okay, but his cholesterol levels were high. Yeah, he's seven. We've cut back on fats, for him and for me, and the food I have been preparing for both of us has been more healthy. We went again last week and his numbers are better, now on the high side of 'normal.' The doc is worried that the real culprit, however, is the weight gain and his metabolism from his meds. We are cutting back on his atypical antipsychotic, Abilify, slowly but surely until we will be done with it, hopefully by the end of the year or at the very latest, January. This is all good news to me, as I've been asking for a good justification for his taking it for about three months now. So glad to get this drug out of his system.
The Kid's therapist let a bad 'by the by' comment slip to me on Monday, however. He said he'd talked to the school, and, his words, "they are really against dropping meds." Naturally, they would be against dropping meds that worked to relieve aggressive behaviors. I would too. But these meds are not working very well against his aggression and frustration (see above, he's been on them with these cycles of anger and difficulty remaining safe in the classroom), and they are making him gain weight in a gross way (8 pounds in six weeks, on a good diet). I really wish he hadn't told me that. I really don't want to know what the school thinks about The Kid's medical info.
Of course I updated the school on the status of The Kid's meds, and now I worry that they will be pointing toward his behavior as caused by his meds being dropped. We're all keeping a close eye on him, and he is definitely going to have some difficulty while we take them out of his system. It may take the rest of the school year, in fact, to truly see a Kid without Abilify. I just can't let it go on that we feed him with this med that is not proving to work, that is pretty much definitely causing damage to his body (weight gain). It would be immoral of me.
So, in the meantime, the only real effect of lowering the dosage of the med I've seen (we've only cut the dosage back by 1/3, and it's only been five days) is difficulty falling asleep. He has been pretty much the same, easily overstimulated but incredibly funny and smart kiddo. I can live with this kiddo. He's a great kid.
Thursday, October 25, 2007
Bipolar is so five minutes ago
PREFACE:
I've been writing this post for over a month now. See, the thing is, when I write about my feelings regarding diagnosis and psychiatry, my opinion changes constantly. If I don't publish as soon as I write? My mood, my opinion, my knowledge about the subject, will change. So. Here's a highly UNFINISHED post about how I feel about the high incidence of bipolar in children, which hit the airwaves in a big way about a month ago...
So. The diagnosis of bipolar disorder in children. Two weeks ago, I linked to only one of the many articles that have been appearing in many news outlets in the last couple of months, outlining a recent report on the increase in the bipolar diagnosis in children. I asked you to read it, and promised an opinion at the end of that day.
Um, well, you see... I've been distracted.
Nothing is going on, in any historic sense. I've been working on organizing my DVR for the fall TV season, doing homework with The Kid and getting attacked by my kitten. Lather, Rinse, Repeat. Also, my sister had a baby. And my best friend came to visit. And I find this difficult to get out because my mind changes often.
I've also had a difficult time organizing my thoughts in my response to all of this talk of childhood-onset bipolar disorder... Believe me, I think about this stuff as much as a 17-year-old boy thinks about sex (which is sad, I admit), but actually getting it all written down has been a feat lately.
See, I've come a long way on this 'coming to terms with having a child with difficulties' thing, and I've just realized that fact.
I've been blogging for two years now. I started right before The Kid started Kindergarten, when I knew the shit was just about to hit the fan. I knew public education and The Kid were going to bump heads. Sure enough, the first day, I went home in tears. Not because I could not believe my baby had gotten so big that he had started school, but because I knew that his personality, behavior and social skills were going to present issues. Two months later, I shelled out the money for the big neuropsychological testing and he was given a diagnosis of bipolar, more technically 'mood disorder, not otherwise specified, on the bipolar spectrum.'
I honestly didn't expect a bipolar diagnosis. I've written this before, but my boss's son is was diagnosed bipolar at 7 or so. I was conversant with it, but didn't think that was what was going on with The Kid. I wrote this post, then, terribly confused about the DSM-IV criteria. At that time, The Kid had certainly displayed every possible ADHD symptom. The 'mania' symptoms, however, we had not seen the majority of. The 'depression' symptoms, we had seen none of. But at the same time, my difficulties with my son had a name. We identified something, we could set a track and a plan. I was relieved with that. Over the intervening years, I've joined support groups and now moderate one online and see this reaction by parents all the time. A confirmation that it is not just your parenting skills, or the amount of TV you let your child watch, or the myriad ways parents of children with emotional/behavioral disabilities are made to feel inferior as parents, or, not just inferior, but to blame for every action their child makes. It is a huge weight off of one's shoulders.
I never thought I'd give The Kid medications for behavior at all, let alone at the age of 5. I had the sneaking suspicion of ADHD for many years, and believed that there were accomodations and diets and supplements I could give him before I moved to psychiatric medications. But here's a fact I can't shy away from, and that my e-friend Philip will find interesting: With the diagnosis of bipolar, it seemed as though he had more of a disease. A disease that nothing but meds would fix. And it would mean a lifetime of them. And at that time, that was okay, it was something that, if we just found the right combination of meds, we could solve, and The Kid would be alright.
I've been writing this post for over a month now. See, the thing is, when I write about my feelings regarding diagnosis and psychiatry, my opinion changes constantly. If I don't publish as soon as I write? My mood, my opinion, my knowledge about the subject, will change. So. Here's a highly UNFINISHED post about how I feel about the high incidence of bipolar in children, which hit the airwaves in a big way about a month ago...
So. The diagnosis of bipolar disorder in children. Two weeks ago, I linked to only one of the many articles that have been appearing in many news outlets in the last couple of months, outlining a recent report on the increase in the bipolar diagnosis in children. I asked you to read it, and promised an opinion at the end of that day.
Um, well, you see... I've been distracted.
Nothing is going on, in any historic sense. I've been working on organizing my DVR for the fall TV season, doing homework with The Kid and getting attacked by my kitten. Lather, Rinse, Repeat. Also, my sister had a baby. And my best friend came to visit. And I find this difficult to get out because my mind changes often.
I've also had a difficult time organizing my thoughts in my response to all of this talk of childhood-onset bipolar disorder... Believe me, I think about this stuff as much as a 17-year-old boy thinks about sex (which is sad, I admit), but actually getting it all written down has been a feat lately.
See, I've come a long way on this 'coming to terms with having a child with difficulties' thing, and I've just realized that fact.
I've been blogging for two years now. I started right before The Kid started Kindergarten, when I knew the shit was just about to hit the fan. I knew public education and The Kid were going to bump heads. Sure enough, the first day, I went home in tears. Not because I could not believe my baby had gotten so big that he had started school, but because I knew that his personality, behavior and social skills were going to present issues. Two months later, I shelled out the money for the big neuropsychological testing and he was given a diagnosis of bipolar, more technically 'mood disorder, not otherwise specified, on the bipolar spectrum.'
I honestly didn't expect a bipolar diagnosis. I've written this before, but my boss's son is was diagnosed bipolar at 7 or so. I was conversant with it, but didn't think that was what was going on with The Kid. I wrote this post, then, terribly confused about the DSM-IV criteria. At that time, The Kid had certainly displayed every possible ADHD symptom. The 'mania' symptoms, however, we had not seen the majority of. The 'depression' symptoms, we had seen none of. But at the same time, my difficulties with my son had a name. We identified something, we could set a track and a plan. I was relieved with that. Over the intervening years, I've joined support groups and now moderate one online and see this reaction by parents all the time. A confirmation that it is not just your parenting skills, or the amount of TV you let your child watch, or the myriad ways parents of children with emotional/behavioral disabilities are made to feel inferior as parents, or, not just inferior, but to blame for every action their child makes. It is a huge weight off of one's shoulders.
I never thought I'd give The Kid medications for behavior at all, let alone at the age of 5. I had the sneaking suspicion of ADHD for many years, and believed that there were accomodations and diets and supplements I could give him before I moved to psychiatric medications. But here's a fact I can't shy away from, and that my e-friend Philip will find interesting: With the diagnosis of bipolar, it seemed as though he had more of a disease. A disease that nothing but meds would fix. And it would mean a lifetime of them. And at that time, that was okay, it was something that, if we just found the right combination of meds, we could solve, and The Kid would be alright.
Then last year, he was given a cocktail of meds, Concerta and Risperdal and Depakote, that shot him straight into the most unstable mood and behavior I've ever seen. He developed tics, he didn't sleep, he was so physically violent I was scared for his safety, mine, my family's, the school staff's. He was kicked out of public school.
At the time, I thought, poor kid. He's SO sick with bipolar.
We hospitalized him. He was inpatient for 10 days, and in the hospital's day treatment school program for four months. During that time, the psychiatrists there started saying, it might not be bipolar. It might be autism.
The paradigm of moving from a mental illness to a developmental disorder is huge. It moved me out of a 'he's sick' frame of mind into a 'he needs skill development and therapy' one. It took me out of the thoughts of 'thank god for these meds' way of thinking and into one that questions his need for them, for the long term (he certainly needed something when he was in the hospital, if for no other reason than to reverse the effects of the risperdal and the concerta, which were horrible). His current psychiatrist, who I trust a great deal, supports us in this new way of thinking, and is helping taper him from the three highly active medications he's currently on.
And yet, I'm convinced that the autism thing, Pervasive Developmental Disorder and/or Ausperger's, is yet another misnomer for him. Some of his behaviors fit their categories, and many do not. He misses social cues but he is not un-sociable. He perseverates on things, but not in an overriding way (perseveration is concentration on one thing, and is typical of autism... An autistic person may know every fact possible to know about baseball, for example. The Kid does not do that in a universal way, but he does immediately perseverate: He wants to play with someone, or something, and must do it NOW!!!! and won't take no, or not now, as an answer, and this is not necessarily being bratty, it smells of obsession with the thought to do whatever it is he's perseverating about, if that is even the correct term, but I digress.)
But, read around the internet just a little bit, pay attention to the newspapers and the news broadcasts that continue to be on and around us all of the time, and you will see a change going on with the idea of what a bipolar child is. It is a misnomer. A bipolar child today may not grow up to be a classically bipolar adult, and therefore, it is not the right thing to call a child. It's a simple as that.
And so, doctors need a new diagnosis to name for these defiant and difficult children. In our case, it's shifting to autism. The funny thing is that I'm far more comfortable telling people that The Kid has a diagnosis of Autism than I ever did telling people about the bipolar or even ADHD. I think this has to do with all of the awareness campaigns and Jenny McCarthy, and even the gorgeous girl on America's Next Top Model. Autism is the thing to talk about now.
But I think it's another misnomer for The Kid specifically, but only time will tell.
Tuesday, September 04, 2007
What's in a name?
A bipolar child by any other name would still have trouble in school, would have sleepless nights and unspeakable rages. But still, academia debates on, and drug companies shove diagnoses down throats:
Check out the article. It's your 'day work' so to speak. I'll give you my take tonight...
“We are just inundated with stuff from drug companies, publications, throwaways, that tell us six ways from Sunday that, Oh my God, we’re missing bipolar,” said Dr. Gabrielle Carlson, a professor of psychiatry and pediatrics at the Stony Brook University School of Medicine on Long Island. “And if you’re a parent with a difficult child, you go online, and there’s a Web site for bipolar, and you think: ‘Thank God, I’ve found a diagnosis. I’ve found a home.’ ”
Check out the article. It's your 'day work' so to speak. I'll give you my take tonight...
Tuesday, March 20, 2007
The Grand Apologia: Why I Give The Kid Medication
This is one of the stickiest subjects ever... Should parents give their children psychiatric medications?
I don't think I have to tell you that I'm not arguing against a straw man here, or at least, a singular couch-jumping, Xenu-loving man. Many people are strongly against giving their children these meds. I've been one of them, until I've lived being The Kid's parent.
We hear stories about young children on psychiatric medications, with diagnoses we didn't know exist in children. There are horrible tragedies which pop these issues before us like the recent murder of Rebecca Riley, the four year old in the Boston area who was overdosed by her parents with a decongestant, an atypical antipsychotic, an anticonvulsant and an antihypertensive. We hear stories like Rebecca's and are quick to judge, and to be honest on this particular case I am among the judgmental--because really, this is a case of child abuse, isn't it? But when I first heard about it, I was able to quickly divorce the abuse issues from the mental illness issues. There is not a direct syllogism that if a) she was diagnosed bipolar so that b) she was given meds so that c) she died, therefore diagnosing children and giving them meds will lead to death. There was abuse, a questionable doctor and a horribly chaotic family situation mixed in there.
But I knew what was coming. I've been looking around the blogosphere in responses to this, and sure enough, there were many connections between giving her psychiatric meds and her death. I'll link a few, here and here, but there are more. There are not a lot of, "what horrible abusive parents" in these blogs, but there is a lot of "what are people thinking by giving children medication at all." Blogs were not alone in reporting in this fashion, most of the television reports that picked this story up were quick to segue into the “should you medicate your child” discussion, as if a malicious, premeditated murder is somehow a natural consequence of giving a child medications for a psychiatric condition.
Not all parents are the Rileys. Thank god. But reading around about this story made me feel like people do think that if you give your child psychiatric meds, you are the Rileys. But I say to the internet (and all 3 of you who read this blog--hi mom!): We are not. See, the Rileys, left to their devises, could have murdered their daughter in any number of ways, and given her circumstances, her father's history of sex crimes, the horrible abusive home, etc. Also, pretty much any prescription med could lead to death when given in excess, but for some reason... But I'm getting off of the point. This is a long lead-in for the meat of this post: why I'm compelled to tell you how I came to give The Kid psychiatric medications. So, let me frame the debate.
There's this assumption that children given meds are somehow similar to someone that a person grew up with. You will hear, "my cousin, growing up, was a spaz, but now he's an accomplished attorney and he never had to take ritalin" or something similar. You don't often hear about "that kid who came to my school in fifth grade, and everyone hated him because he got in fights all the time, cried until he slobbered that one day after he tried to throw an eraser at our teacher, and then in eighth grade he turned into a total dirty stoner guy... And I don't know what ever happened to that guy. Hmmm."
I'm not talking about your spazzy cousin. I'm talking about mentally ill children. Real mental illness in children exists, and there is a vast difference between the child who is often offered up as "energetic" or "creative" or "poorly disciplined" and one who suffers from debilitating anxiety, hears voices, cannot control his rage, does not sleep, masturbates at 5 years old, is compelled by the belief that were he not to count steps and hand washings he will hurt his family. But in most debates I hear on the subject, people stick with the familiar: highly active children vs. ADHD. ADHD is bandied about to the point that it sounds like every kid could be diagnosed with it. And while that's entirely possible that it is over diagnosed, it really does a great disservice to the kids who have it so severely that it hinders their ability to function.
I'm not the greatest fan of the diagnosis. I hate the figures cited that bipolar in children has increased 400% since 1990. An alarming figure, but it is a natural increase, actually, since juvenile onset bipolar disorder has only been included in the Diagnostic Statistical Manual-IV within the last 30 years. No mental health professional would say that the symptoms they list as consistent with bipolar didn't exist in children prior to 1990; it’s just that we didn't call it bipolar. A rose is still a rose by any other name. I would venture a guess and say that eventually, what we're calling bipolar in children today, will be split into different categories and/or called something completely different by future versions of the DSM.
So, if we take this discussion out of the realm of the "ADHD" vs. high energy child, the kids we all know, and into one of the child with serious issues of disability, allow me to describe why I believe The Kid fits into the latter category. Since he was born, he's been MORE. And I mean this literally, he is more of everything.
1. More wakeful: he slept no more than 1-2 hours at a time from infancy to age 12 months.
2. More stimuli-seeking: since he could walk and run, he has sought out deep-tissue contact (running from one end of a room to the other to ram into a couch, stool, person).
3. More distractible: certain environments (large rooms, crowded places--like a classroom) excite him to the point that I cannot get him to listen, speak clearly, or catch eye contact for more than 1 second, every time we are in one (as opposed to the odd time where he's been given caffeine or sugar or anything external that might cause excitability or distractibility).
4. More reckless and risk-taking: The Kid has always been a nightmare to keep safe: he’s been known to climb up tall bookshelves, stand on the edge of the kitchen counter like a diver (tippy toes only), and even once, on a vacation, he snuck out of our rented condo and was discovered on the outside of the railing of a third flood balcony.
5. More moody and sensitive: Prone to sudden swings of mood, this one is hard to describe. He will go from “I love you” to “I hate you and will attack you” in a moment. He will lose his temper, begin an inconsolable crying jag, or get so upset at himself for failing do something well that he hits and hurts himself at the slightest mention of bad news.
6-100. I could go on: more anxious, more easily frustrated, more suicidal and so on.
Now what you all need to know, see, is that The Kid I’ve described above is The Kid, at “typical” or “baseline” at home. He lives in a stable, loving home. He has never been abused or lived through any kind of trauma. I discipline him, set reasonable limits, provide a loving home with rules that he follows. I am a good parent, and his behavior is not based from the way that I parent, or the home that he lives in. I can say this with the utmost confidence because my parenting styles have been scrutinized by so many experts (social workers, psychologists, psychiatrists, teachers and even social services and police—the only people I’ve not had sniffing up my parenting butt are politicians and I suppose scientologists) in the past two years, and all of them have returned with answers of Wow, you do a really good job, mom. And while I’ve adopted suggestions from some of these experts (most notably using feedback from the schools to either allow or disallow certain privileges), I get a lot of support, and a lot of the comment, “Keep doing what you are doing.”
So, I described The Kid. But I described The Kid at “typical,” and at that, “typical at home.” We’ve not discussed “The Kid at School” Suffice it to say, he’s an entirely different child. If he’s “more” normally, he’s even “more-er” at school. At his worst at school, he is not teachable. When he was still in a general education classroom, they were flabbergasted by what they saw: a bright, quite possibly brilliant child, who could not sit down to even write his name. He is completely over stimulated in any environment with more than 6 children, he will not sit, he will not take direction or redirection. If he does not feel as though he can get help for his perceived problem at any given time, he will escalate to extreme violence, or he will run away. Truly, he resorts to fight or flight.
In September, when life really hit the fan for him, he was so anxious about what he would do wrong the next day in school, he would pace in his room, he would toss and turn, and at only 6 years old, try to function on less than three hours of sleep. He trusted no one. He thought that people hated him, that certain teachers and staff at his school were out to get him. He reached what under the constraints of ‘bipolar disorder’ is considered mania. He would speak in extremely fast, slurred spurts of unintelligible words; he would jump from action to action, unable to finish anything properly, but wanting desperately to do it all.
Seeing that behavioral changes were not working, or had not worked, after all of these years, I was at a complete loss, and turned to doctors. But before I turn my sights on the medical community, I want to finish up with schools.
I think schools have a great deal of responsibility in this debate, and while I agree that parents bear the greatest accountability to their children's health, there is enormous pressure on parents from schools, more so than from any other single institution.
And this, I think, is the ultimate double-edged sword. In the 1970's the Individuals with Disabilities in Education Act was passed into law. It was an awesome feat of civil rights, winning children with disabilities the entitlement to free public education, and at that, a free public education that catered to each child's unique needs. It also set in motion the procedural documentation that is now necessary in order provide those services: read this specifically as diagnoses.
What I think a lot of people don't realize in the boom of mental illness diagnoses in children is a direct result of parents and schools trying to cater to children’s educational needs under the constraints of their own system. In order to qualify for special education services, kids need a diagnosis. Schools cannot diagnose children. Do you see where I’m heading here? We have to go to doctors for these diagnoses.
I’ve tried to find a definitive source for the average age that ADHD and bipolar is diagnosed in children. Some studies I’ve found state 6, Kindergarten aged, and others state 8, or 2nd grade. Regardless, I don’t think I’m grasping at straws to suggest to correlation to the beginning of school and the diagnosis of mental illness in children.
Regular classrooms cannot handle children with special needs, let alone severe special needs, because of the pressure they have to perform. In this age of results-based teaching, when a school is pressured to prove their “accountability” to teaching their students to tests, special education is a key component to tease out kids that can cause poor scores. Perhaps I’m too cynical, but I see this happening all over the state of Colorado. I recently got a letter from The Kid’s school district listing the percentage of “acceptable” C-SAP scores from last year. The district received passing scores in all demographics except for ‘limited English proficient’ students and ‘IEP’ or special education students. It is nice that they can exempt these students from the rest of their results, is all I’m saying. And isn’t nicer to identify these kids before they gum up your scores?
That’s perhaps a little unkind to actual, classroom, day-to-day staff and teachers in our schools, but the movement exists, and for now it feels inexorable.
But let me get back to the pressure on parents to seek a diagnosis, and to whom parents must turn for these diagnoses: mental health workers. Oy. I live in a big city, with lots of mental health professionals and facilities, even for kids. And I’m lucky. But even with all of these folks out there, there are really very few choices. It is difficult to find a psychiatrist or psychologist at all, let alone one that you trust or that will grow a good, professional relationship with you and your child. Their practices are filled to exploding, and you are lucky to get an appointment in a timely fashion. When you do find one, you are generally at their mercy. You can take their prescriptions or leave them, sure. But you rarely go to a psychiatrist without first being at your wits end. And then, you try the medication.
If, like us, you are put through a slew of medications, some which cause side effects, some which only work for a while and then need to be up-titrated, work again until they need increasing again, etc…, you are still at the mercy of the doctor which prescribes you medication. When The Kid was in crisis last summer into fall, I spent three months attempting to find a psychiatrist who would see him at all. Once I found her, she plugged him full of drugs which caused him severe muscle stiffness, facial and somatic tics, drooling, confusion, and the horrible pair of sleeplessness and fatigue. By the time I realized it was imperative to find a second opinion, I was looking at one doctor who couldn’t see The Kid, even on an emergency basis, for six months, and many others who would not see The Kid at all.
The end result is that The Kid had to go into the hospital to be stabilized. And while I did change a few things about his home life (like disciplining at home for things that happened at school), the majority of positive changes that we saw come out of The Kid were due largely to the fact that he was finally put on the right medications. Medications allowed him to sit at a table and concentrate on a task long enough to complete it. Medications that allowed his body to slow down and obtain a healthy sleep pattern again. Medications that provide the stimulation in his brain that help him control his impulses and make socially acceptable choices with his actions.
The important thing is to note that The Kid's story is not in any way unique. There are families all over this country encountering this exact struggle, right now.
I don’t blame teachers. I don’t blame doctors. I certainly don’t blame parents, as I am so sympathetic to the struggle of parenting a severely troubled child. This is a broken system. Insurance companies tell us who we can see and when, not doctors. Doctors are so few and far between that their practices are jam-packed with kids that they barely know, and must make life-altering decisions on their behalf in a monthly 20 minute appointment. Teachers are wholly underpaid and are pressured to teach to tests, and are not adequately trained to deal with kids that need accommodations. It's broken.
Sad huh? Welcome to my world.
Wednesday, December 20, 2006
Snow Business
This post is brought to you by the BLIZZARD OF 2006. We're having a white Christmas in Denver, y'all.
See, I wouldn't normally have time to write this post. My life has been a flurry of errands, driving The Kid to and fro, and work. But Blizzards? They prevent us from running errands. Both of The Kid's schools are closed today (both of them, that's right. I'll get to that later...). My friend Shannon wrote today in her blog that this must be proof that God hates Christmas, because now the last minute shoppers (okay, I'm so included in this category) will not have time to purchase all that they need before Sunday. I think an alternative theory on this is that God hates last minute shoppers.
I take it to mean, however, that God really loves me, because I really really really needed a day where I stayed at home in my pajamas all day. So, well, aw shucks, God, you must really like me. Thanks a lot.
So. On to what I would post about had I the time.
The Kid.
He's really doing remarkably well. Something happened shortly after Thanksgiving. He honestly had a completely crap Thanksgiving weekend, and it was right about then that I noticed how chunky the boy had become. Like not fitting into his jeans. Like I could see chins, in the multiple, where in past months, it was hard to find anything chubby about The Kid ever, on any part of his body.
We made some notable changes to his medications, as in dropped completely the evils of the atypical antipsychotic (which, while it is as scary as it sounds, is a very normal prescription med for pediatric bipolar disorder) and switched back to Abilify, which is ultimately an antipsychotic med as well, but seemingly without these scary side effects. A "new generation" med for crazy kiddos.
He's also not taking as MUCH medicine, which is always cause for joy.
And you know what? He's loads better. We're still seeing some troublesome stuff, however, so we're not done. He gets really sleepy in the late afternoon, which, funny enough, is when he has the least amount of medication in his body. The doctors are confused, but they are committed to figuring it out at least.
We've also found a school placement for him after the holidays. It is a special classroom, a special school, in fact, for kids that can't quite handle all of the 'inclusion' of a regular SIED program. It is very much a "self-contained" program, which a lot of SIED programs call themselves as well, but it is truly "self-contained." The SIED classroom The Kid was in back in October when all of the hospital talk began spent a great deal of effort to get the kids to be in the general education classroom settings. So, the most sensory overloading parts of these children's days would be spent with the rest of the school: Art, Music, PE, Recess, Lunch. I've always assumed that this choice for 'gen ed' time was more because of scheduling issues than for "concern" to get the kids included in a general ed program, but that's kind of beside the point right now. Basically, The Kid can't handle a classroom of more than 10 kids. All of the good things that have happened to him, all of the strides he's made, they go out the door in large settings.
We've visited this school twice. Once, I drove him there and we all met with the staff and it was just them, me and The Kid. The second time, I did not go. The Kid will be taking the bus (an hour long drive!), so he tried that out, and spent the day with them on Monday. He was supposed to go today, but oops! Snow day.
The best news ever? I told The Kid this morning that he didn't need to wake up early, that we had a snow day today. Know what he said, "No! I wanted to go to school!"
Music. My ears totally heard music there.
See, I wouldn't normally have time to write this post. My life has been a flurry of errands, driving The Kid to and fro, and work. But Blizzards? They prevent us from running errands. Both of The Kid's schools are closed today (both of them, that's right. I'll get to that later...). My friend Shannon wrote today in her blog that this must be proof that God hates Christmas, because now the last minute shoppers (okay, I'm so included in this category) will not have time to purchase all that they need before Sunday. I think an alternative theory on this is that God hates last minute shoppers.
I take it to mean, however, that God really loves me, because I really really really needed a day where I stayed at home in my pajamas all day. So, well, aw shucks, God, you must really like me. Thanks a lot.
So. On to what I would post about had I the time.
The Kid.
He's really doing remarkably well. Something happened shortly after Thanksgiving. He honestly had a completely crap Thanksgiving weekend, and it was right about then that I noticed how chunky the boy had become. Like not fitting into his jeans. Like I could see chins, in the multiple, where in past months, it was hard to find anything chubby about The Kid ever, on any part of his body.
We made some notable changes to his medications, as in dropped completely the evils of the atypical antipsychotic (which, while it is as scary as it sounds, is a very normal prescription med for pediatric bipolar disorder) and switched back to Abilify, which is ultimately an antipsychotic med as well, but seemingly without these scary side effects. A "new generation" med for crazy kiddos.
He's also not taking as MUCH medicine, which is always cause for joy.
And you know what? He's loads better. We're still seeing some troublesome stuff, however, so we're not done. He gets really sleepy in the late afternoon, which, funny enough, is when he has the least amount of medication in his body. The doctors are confused, but they are committed to figuring it out at least.
We've also found a school placement for him after the holidays. It is a special classroom, a special school, in fact, for kids that can't quite handle all of the 'inclusion' of a regular SIED program. It is very much a "self-contained" program, which a lot of SIED programs call themselves as well, but it is truly "self-contained." The SIED classroom The Kid was in back in October when all of the hospital talk began spent a great deal of effort to get the kids to be in the general education classroom settings. So, the most sensory overloading parts of these children's days would be spent with the rest of the school: Art, Music, PE, Recess, Lunch. I've always assumed that this choice for 'gen ed' time was more because of scheduling issues than for "concern" to get the kids included in a general ed program, but that's kind of beside the point right now. Basically, The Kid can't handle a classroom of more than 10 kids. All of the good things that have happened to him, all of the strides he's made, they go out the door in large settings.
We've visited this school twice. Once, I drove him there and we all met with the staff and it was just them, me and The Kid. The second time, I did not go. The Kid will be taking the bus (an hour long drive!), so he tried that out, and spent the day with them on Monday. He was supposed to go today, but oops! Snow day.
The best news ever? I told The Kid this morning that he didn't need to wake up early, that we had a snow day today. Know what he said, "No! I wanted to go to school!"
Music. My ears totally heard music there.
Friday, November 10, 2006
Wherein I Write Haikus and Write About Really Sad Stuff
I'm in the strangest mood tonight, let's get that out of the way right here.
See, I've not been in the mood to write much lately. But fueled by creative cooking (I made really yummy pork chops brined in saltwater and maple syrup with a very inventive Fat Tire gravy... Did you know you could deglaze a pan with beer? It's great!), as well as a medicinal amount of beer while I cooked and ate, I find myself again in the mood to write a thing or two about the state I am in.
See, prior to the creative cooking experiment, this week has looked a lot like this: wake up, go to work, pick up The Kid, go home, work, feed self and Kid, attend to other random needs of Kid and self, bed. Repeat. See? No where in that previous description do you see "write pithy blogpost about heartbreaking struggle on internet." Nope, no place for it.
Instead, I've done a lot of thinking internally. There is plenty of room in the aforementioned schedule for navel gazing and self-doubt. I look back, I can say with all honesty that each week since somewhere in July has been progressively worse than the one prior to it. Prior to the start of first grade for The Kid, my biggest problem was that the daycare annoyed me.
Remember? Summer?
Bickering With Other Kids.
Damn. Good times, indeed.
Then, school started and The Kid started going slightly nutty with the running away from teachers and kicking chairs and breaking the really nice school secretary's pencil caddy. And I wanted to help them help him, and was playing the role of super involved parent, writing long emails and calling daily and setting meetings and stuff. But then I lost all faith in them because instead of working with me to help The Kid, they broke all kinds of laws and failed to do all of that 'parent notification' stuff that the pesky disability laws protect against. I can't lie and say I'm over all of it, but I can say that I've learned a little bit about being the obstinate party on the bad side of bad news. Sometimes you have to suck it up and take it.
Schools: Don't break the law
Bitches. Yea! The A.D.A!
You stick up for us!
or alternatively:
Should have known better.
The school couldn't handle it.
The Kid needed help.
So we tried another school, but then the hospital. The hospital which I tried to contact first, but we got talked out of it. Oh well, another missed opportunity to provide timely care to The Kid. It happens every day. But anyway, we DID end up at the hospital, in their school program, and damnit if they couldn't even handle it. He was admitted to the psych ward.
Bring on Sedation!
Drug him 'til his eyes water.
That will fix him, right?
Except, that was not it, not it at all:
Wow, the crazy kids
They're a lot like us. Cute, too!
The Kid belonged here.
The staff at this hospital was sooooo good. They did have to give him "extra" doses of certain meds to keep him safe for the first few days. After that, though, the non-extra doses of meds kicked in, and he began to function, he began to be my darling Kid again. See, he was a mess before that. He was anxious, and unsleeping. He was tirelessly angry, and itchy. Also restless and sad. He didn't function. Living with that was a lot harder than seeing him on psychiatric medicines in a hospital, believe me. After 10 days inpatient with significant gains in mood stabilization, he was discharged.
He came home Monday
pizza and macaroni
joyous reunion
But then, but then... Do you know how life has a way of letting you know that you are not the center of the universe?
We went to my mom's house for a family dinner when he came home. My mom and I were bitching about political solicitations via telephone, and her phone rang, so I answered it, expecting another of these November nuisances. Instead of a recording of Bill Clinton or John McCain, it was a real person. And not only that, something and someone much much more.
It was my aunt, and my uncle had died. Suddenly. Shockingly. No one was prepared for this. My uncle was a quiet guy. He loved his wife, his kids, and his dogs. He wrote out the Christmas cards and birthday greetings and all of the letters to the family for as long as I can remember. He was strong and silent, and good. Good as can be. The very definition of Good Man. He was a hunter, and trained black labs for hunting trials. He was a man of few words. Our last great and very typical conversation took place right around the time of the great Chaney-Shooting-His-Buddy-In-The-Face incident. I asked him if he could understand what happened there, to see if that was "something that could happen," like the stories you hear other random accidents that you think, 'that SO could have happened to me.' He said, "No. And I'm not saying that because I'm a democrat." I often thought of him as the kind of guy who preferred the kind of communication that exists between a man and his [extremely well trained and beautiful] dogs. Not complicated, lots of unspoken understanding and great amounts of peace.
Don, you and your dogs
are hunting in the duck blind
together, Heaven.
Other things have been going on, too. Midterm elections. Whoopee. I'm feeling so underwhelmed and cynical about it all. Perhaps it's because Colorado elected all sorts of blue in all sorts of places, but then still decided to put into our constitution an amendment defining marriage as between a man and a woman . I guess I'm an underrepresented extremely liberal democrat, and I want the sun and the moon and the stars and I've only been given the moon and I'd really like that sun and stars, too. Also, I read an article which cited the last time congress changed hands as dramatically, in the year of Gingrich's contract for America, 12 years ago.
12 years ago? For reals? I remember that Wednesday morning so well. Honor Scholar seminar, freshman year. DePauw University, where the students are 9814% more conservative than the professors, where the majority of the students come from affluent suburbs of Indianapolis, St. Louis and Chicago, where the majority of the students never saw diversity in color and ethnicity until Pell Grants and affirmative action made them see it (and they've probably not seen it since, for the most part). And the fucking gloating on my friend Kevin's face when he walked into seminar that morning. So, I freaked out quickly in thinking that that was only 12 years ago and holy shit I'm getting old that I was an "adult" 12 years ago (but that fixed the freak out, because I was exactly 18 years old in 1994, so yo, I'm really not very old at all), but then I returned to Kevin's gloating. I will not be a Kevin in the light of this change. I'm in Wait-And-See mode. But also, don't think for a minute that I've not done the math to figure out that we've got a woman third in line to the presidency. And a woman from San Fransisco, at that. Cheers, girls! (But I'm totally not gloating, it's just about the girl power. Oh, and Impeach Bush AND Chaney. Somehow)
Midterm Elections
Steering us toward center
I want to go left
I think this post has to end someday. I can't think of how to end this, but in Haiku:
Soapy Water, yo
The Kid, Dripping With Crazy
The Mom, Drinking Suds.
Friday, October 27, 2006
This is your kid NOT on drugs...
The Kid started going to the 'hospital school' on Tuesday this week, and I must say that after three days, I'm honestly starting to feel optimistic again. More good things have happened in the last three days than have happened for The Kid and his mental illness in the last year. Or shoot, ever.
That said, he's still had some tough days. They have a 'safe room' where kids can safely rage and completely lose it. He's spent a majority of his days in that room. His first day was disastrous. But we're seeing signs of hope, he's using his words to describe his feelings a little better. He's not dreading leaving the house in the morning, despite his bad days.
One of the benefits of a day treatment program for kids like The Kid is that school is completely centered around their needs. There is no, "I don't have time to ______" from the teacher. There is a fully accredited teacher in the classroom, at least two nurses, several social workers, and a team of psychologists and a team of doctors rotating around the classrooms like satellites. Well, satellites that would jump back to earth whenever they are needed to fix things. Okay, bad analogy I suppose. Anyway, there are academics taught and worked on, but a great deal of the day is spent working on the more expressive aspects of academics: art, music, playing games in the gym or on the lawn. Don't discount gym... The Kid has such a hard time with the disappointment of losing or the careful science of social interaction within sports, especially just being a good sport. That kind of social interaction is one of his biggest difficulties. He needs more training in sports than reading right now, probably. I can work on his reading, and while I can play games with him to teach him about losing and being a good sport, what he really needs is to learn how to do that with his peers. One of the most amazing things I've seen this week was a ball game the kids were playing on Wednesday, and when The Kid was "out," he simply went and sat on the concrete wall with the other kids that were "out."No fight. I was amazed. Normally, that would be a trigger for rage.
But it's all baby steps. He's still having a really difficult time in the classroom. Like, I said, he's having meltdowns about 6 to 10 times per day. That's hours and hours of the day. We're currently in a wait and see time to see if they want to hospitalize him, inpatient, for a few days before they spend much more time in the classroom. The hospitalization would act as a chance to really stabilize him and work with him more intensively (out of the school environment) to get him on the right meds, really investigate root causes, etc, before the continued attempt to get him to function better in the classroom. I understand. I don't want him hospitalized, but I'm also cynical enough to know that I've got thirty days per calendar year through my insurance for mental 'inpatient' services. Each day of day treatment is equal to 12 hours of inpatient. Each day he's there, my countdown clock of time at this hospital ticks down. If he needs to be inpatient for a few days to help the classroom setting be more effective, rather than the contstant struggle he's currently having in the 'safe room,' then I'll be happy to give it a try. Nothing would be worse than to struggle for the next 15 or more days with only a little improvement, only to THEN have him hospitalized, and eventually run out of options when my insurance company pulls the plug.
Other things that encourage me:
1. He is going to get a neurologic work up next week. This includes a sleep-deprived EEG, and probably an MRI. Because of his frequent vomiting and the physical tics that he's developed, they want to rule out a seizure disorder. A friend of my sister's brought this to my attention a while ago, and we actually have an appointment to meet with a neurologist in January (the first appointment available when I made the appointment in September!). Because of this program, we get to do this next week. The EEG is 'sleep deprived,' I have to keep him up until midnight the night before the test, and then wake him up at four the morning of. This means I get to go all fraternity pledge hazing on The Kid. We'll call the frat Mu Gamma. Just for fun, I was thinking about instituting other frat-house hazing staples, like running naked around the house, cleaning the bathroom with a toothbrush, speaking only to his pledge mom (me) and learning the greek alphabet. I suppose we'll refrain from obligitory shots of Jaegermeister. I'm totally kidding, you know. (we'll definitely be doing the jaeger)
2. Right before we started this program, our regular psychiatrist took The Kid off of all of the meds he'd been taking previously and started him on Depakote. Depakote is a med that only works if it has an optimum level in the blood stream. It takes a long time to adjust and lots of blood testing to know when that optimum or therapuetic level has been reached. Because of the start of day treatment, we never got that blood level taken. The hospital did take it yesterday. I guess the therapuetic level is between 75 and 100 [whatever units of whatever to whatever in his blood]. The Kid's blood profile from yesterday only showed 37 units. He's essentially unmedicated right now. I've basically known this without the blood test, but knowing how off the mark he is, this just shows me how un-mitigated by meds his behavior currently is.
3. He's in a great mood. He's doing better with his anxiety. He's talking about his feelings. Ultimately, I think The Kid is encouraged. Which is the best news of all.
That said, he's still had some tough days. They have a 'safe room' where kids can safely rage and completely lose it. He's spent a majority of his days in that room. His first day was disastrous. But we're seeing signs of hope, he's using his words to describe his feelings a little better. He's not dreading leaving the house in the morning, despite his bad days.
One of the benefits of a day treatment program for kids like The Kid is that school is completely centered around their needs. There is no, "I don't have time to ______" from the teacher. There is a fully accredited teacher in the classroom, at least two nurses, several social workers, and a team of psychologists and a team of doctors rotating around the classrooms like satellites. Well, satellites that would jump back to earth whenever they are needed to fix things. Okay, bad analogy I suppose. Anyway, there are academics taught and worked on, but a great deal of the day is spent working on the more expressive aspects of academics: art, music, playing games in the gym or on the lawn. Don't discount gym... The Kid has such a hard time with the disappointment of losing or the careful science of social interaction within sports, especially just being a good sport. That kind of social interaction is one of his biggest difficulties. He needs more training in sports than reading right now, probably. I can work on his reading, and while I can play games with him to teach him about losing and being a good sport, what he really needs is to learn how to do that with his peers. One of the most amazing things I've seen this week was a ball game the kids were playing on Wednesday, and when The Kid was "out," he simply went and sat on the concrete wall with the other kids that were "out."No fight. I was amazed. Normally, that would be a trigger for rage.
But it's all baby steps. He's still having a really difficult time in the classroom. Like, I said, he's having meltdowns about 6 to 10 times per day. That's hours and hours of the day. We're currently in a wait and see time to see if they want to hospitalize him, inpatient, for a few days before they spend much more time in the classroom. The hospitalization would act as a chance to really stabilize him and work with him more intensively (out of the school environment) to get him on the right meds, really investigate root causes, etc, before the continued attempt to get him to function better in the classroom. I understand. I don't want him hospitalized, but I'm also cynical enough to know that I've got thirty days per calendar year through my insurance for mental 'inpatient' services. Each day of day treatment is equal to 12 hours of inpatient. Each day he's there, my countdown clock of time at this hospital ticks down. If he needs to be inpatient for a few days to help the classroom setting be more effective, rather than the contstant struggle he's currently having in the 'safe room,' then I'll be happy to give it a try. Nothing would be worse than to struggle for the next 15 or more days with only a little improvement, only to THEN have him hospitalized, and eventually run out of options when my insurance company pulls the plug.
Other things that encourage me:
1. He is going to get a neurologic work up next week. This includes a sleep-deprived EEG, and probably an MRI. Because of his frequent vomiting and the physical tics that he's developed, they want to rule out a seizure disorder. A friend of my sister's brought this to my attention a while ago, and we actually have an appointment to meet with a neurologist in January (the first appointment available when I made the appointment in September!). Because of this program, we get to do this next week. The EEG is 'sleep deprived,' I have to keep him up until midnight the night before the test, and then wake him up at four the morning of. This means I get to go all fraternity pledge hazing on The Kid. We'll call the frat Mu Gamma. Just for fun, I was thinking about instituting other frat-house hazing staples, like running naked around the house, cleaning the bathroom with a toothbrush, speaking only to his pledge mom (me) and learning the greek alphabet. I suppose we'll refrain from obligitory shots of Jaegermeister. I'm totally kidding, you know. (we'll definitely be doing the jaeger)
2. Right before we started this program, our regular psychiatrist took The Kid off of all of the meds he'd been taking previously and started him on Depakote. Depakote is a med that only works if it has an optimum level in the blood stream. It takes a long time to adjust and lots of blood testing to know when that optimum or therapuetic level has been reached. Because of the start of day treatment, we never got that blood level taken. The hospital did take it yesterday. I guess the therapuetic level is between 75 and 100 [whatever units of whatever to whatever in his blood]. The Kid's blood profile from yesterday only showed 37 units. He's essentially unmedicated right now. I've basically known this without the blood test, but knowing how off the mark he is, this just shows me how un-mitigated by meds his behavior currently is.
3. He's in a great mood. He's doing better with his anxiety. He's talking about his feelings. Ultimately, I think The Kid is encouraged. Which is the best news of all.
Wednesday, September 27, 2006
My Child is Disabled.
I had to tell a client that today. Because I've been, well, unresponsive. I've been out of the office and not returning phone calls. My boss had already explained that I'd had a sick kid, and was out. When she talked to me, she said (I might be projecting here), forcefully and so not all that sincerely, I hope your child is over his cold. I had to correct her. No, Client, my son is disabled. And he's not better yet.
***
So, some updates. Because the school trampled on my rights as a parent, told me what I was signing was "informal" and "just a record that [I] attended this meeting," and that was a complete lie, I am currently shopping for an SIED classroom. Because he must be placed in an SIED classroom, as what I signed was as formal as the constitution, and their recommendations, however contentious, are currently the stone tablet of The Kid's current educational plan.
Now, before you go and find out what school The Kid attends so that you can throw eggs at it or whatever, I am going to go along with this decision. I'm willing to change his placement because it means that he will get the hell away from the Social Worker Pro Tem, who I'm fairly certain is the spawn of satan, and The Principal, whom I can no longer look in the eye directly because she so completely betrayed my trust. They don't want to teach The Kid anymore. How could I possibly want them to teach him, then? If The Kid's behavior necessitates it (like I think it might), I can request a formal review of the IEP at any time. It's a lot more tricky than that, but I'll not get into all the legal bull-oney quite yet.
But the SIED classroom. Sweet Jesus.
I went to the one that they chose for me. I have two major complaints that tell me this school is absolutely unacceptable for The Kid.
***
So, some updates. Because the school trampled on my rights as a parent, told me what I was signing was "informal" and "just a record that [I] attended this meeting," and that was a complete lie, I am currently shopping for an SIED classroom. Because he must be placed in an SIED classroom, as what I signed was as formal as the constitution, and their recommendations, however contentious, are currently the stone tablet of The Kid's current educational plan.
Now, before you go and find out what school The Kid attends so that you can throw eggs at it or whatever, I am going to go along with this decision. I'm willing to change his placement because it means that he will get the hell away from the Social Worker Pro Tem, who I'm fairly certain is the spawn of satan, and The Principal, whom I can no longer look in the eye directly because she so completely betrayed my trust. They don't want to teach The Kid anymore. How could I possibly want them to teach him, then? If The Kid's behavior necessitates it (like I think it might), I can request a formal review of the IEP at any time. It's a lot more tricky than that, but I'll not get into all the legal bull-oney quite yet.
But the SIED classroom. Sweet Jesus.
I went to the one that they chose for me. I have two major complaints that tell me this school is absolutely unacceptable for The Kid.
- They are using goddam fucking sticker charts. (Plusses and Minuses! Add Up Your Points At The End Of Each Day For Skittles!!! Motivate them to behave better! We're not just teachers, We're CHEERLEADERS!!!! If they're real good, we'll bake 'em cupcakes and hide 'em in their lockers!!!--Oh, seriously, sorry for that) I hate the sticker chart because we used this on The Kid for two years and it was only disastrous. It provided good data, but when he was involved in the "points," or "smiley/frowny faces," a 5 minute tantrum turned into a 30 minute tantrum, because he'd get upset all over again when time came to record the negative behavior. And in the end, that's not teaching better behavior. I hate the sticker chart thing because what these kids with psychiatric disorders that inhibit their ability to react to bad news or control their impulses when presented with frustrating situations don't need is to be set up for more tantrums. I thought that was one of the major reasons he was being put in SIED. When I expressed (kindly, for real) my distaste for this kind of charting because of bad results and further reading I've done [Greene, Ross; The Explosive Child], the SIED teacher said, "Well, all of the kids in this class do these, and don't you think if the other kids were doing it, he would want to do it too?" Um, The Kid will not be attending here. Peer pressure as behavior plan doesn't work for me. Especially since in 10 years, The Kid will still be bipolar and I'm already terrified of peer pressure then and the comorbidity of bipolar with substance abuse. Plus, I totally squandered an opportunity to say to this teacher, "Well, if all the kids wanted to jump of a bridge, do you think The Kid should do that too?"
- The kids. Six third-graders. A second-grader and first-grader each. That's the population. One of the kids pointed at me and said something rude. Another kept banging his head on tables and walls. This is so absolutely horrifying, I can't imagine these kids as The Kid's peers, even if they have the same diagnoses. Apart from the emotional reaction to seeing disturbed kids, the heavy weight of older kids in the classroom bothers me, legitimately, I think. Most of The Kid's problem is social, the last thing he needs is to be around bigger older kids with emotional disabilities (at least, when the bigger older ones are in the majority). There's got to be some learning of bad behaviors that would happen.
So, The SIED class was disappointing, to say the least. I think it will be a big fight to talk about a different placement, but shit, I will do anything to keep him out of that particular program. But, who am I to be judgemental of the behaviors of other children? My child is disabled too.
***
My child is disabled. Do you know what's worse? He looks it now. We've overmedicated him since last Friday. I went to the doctor today with major concerns about side effects from all of these new drugs he's on. He's drooling. He can't fall asleep. But most seriously, he's complaining of muscle stiffness and is doing this scary arm-stretch and back arch that looks postively palsy-ish. He does this back arch thing and the sticks him arms out at about 45 degree angles from his sides and then moves his thumbs and pinkies together, and sticks his other three fingers on each hand down toward the ground and stretches, showing of his double jointed elbows. It kind of makes him look like the typical "retard." And it makes me sick and sad and guilty and regretful and horrible. The doctor stepped back his meds, prescribed a drug to counter act these side effects, but the fact that he's so filled with little synthetic inhibitors and receptors and atypical anti-psychotics and stimulants just slays me. I can't even write about how that makes me feel.
***
I always think I've got this thing together, that I'm getting tough. But don't let that fool you. Every day, my lifelong dreams of being a parent to my very own baby die to the reality that we're facing. And I can lie and say I wouldn't have it any other way, but the truth is, I don't want to have a disabled child. I want a healthy, happy child. Right now, I don't really have either of those things in The Kid, and it hurts so much. It hurts the most because I know all he wants is to be happy and healthy, and I'm the only person on this earth equipped to fight for those things to happen. No matter how hard I fight, it might not happen. What if he can't get it together and he spends the rest of elementary school in SIED? And what if in 7th grade he and his SIED buddies find out that smoking pot and drinking vodka make you feel a lot better than the pills mom makes you pop every morning? What if he's in for a struggle for the rest of his life? The fear of those things can really suffocate a mother.
I'm in mourning tonight. I'll get better, and I know that The Kid will too, eventually. I truly, honestly hope so anyway.
Saturday, October 22, 2005
Psych Eval.
I can't seem to organize my thoughts from last Wednesday's meeting. I met with the DU psychologists to go over the results of The Kid's evaluation. The important things we found out boil down to the following bullet points (I get all technical when I don't know what to say):
- The Kid is really intelligent
- The Kid's behaviors are consistent (VERY consistent) with ADHD
- The Kid's behaviors and non-responsiveness to ADHD meds indicate a mood disorder like bipolar disorder
I'm not particularly frightened of the bipolar diagnosis, particularly because my boss has a bipolar son who is a STAR. It's not a death sentence. What scares me is the drugs. Lithium, anyone? YIKES! I haven't had the chance to talk to the Psychiatrist yet, but she had mentioned that our next step after Adderall would be mood disorder drugs. Because I didn't know The Kid's father for a very long time (about a month), I don't know his history. I do know that he was extremely charming, had a quick mind and was very high-energy and with hindsight can see either ADHD or bipolar attributes. I don't know about either of those things in my family history, although my dad's side has a history of alcoholism (hello, IRISH!), and who knows what they were self-medicating, although being a drinker doesn't mean that you have mental disorder other than being pre-disposed to addiction.
I need to read up about bipolar in children. I was skeptical at first, when they mentioned it. The Kid doesn't get depressed, so what I know of bipolar disorder is that there are periods of mania followed by periods of depression. Apparently, it isn't that simple when it presents in children. The one website I have counted on through this whole time, NIMH, lists attributes here. On the website, they list the manic behaviors:
- Severe changes in mood, either extremely irritable or overly silly and elated
- Overly-inflated self-esteem; grandiosity
- Increased energy
- Decreased need for sleep, ability to go with very little or no sleep for days without tiring
- Increased talking, talks too much, too fast; changes topics too quickly; cannot be interrupted
- Distractibility, attention moves constantly from one thing to the next
- Hypersexuality, increased sexual thoughts, feelings, or behaviors; use of explicit sexual language
- Increased goal-directed activity or physical agitation
- Disregard of risk, excessive involvement in risky behaviors or activities
I am not convinced. Maybe some of these things he is too young to even show (hypersexuality, for example), but I don't see the grandiosity... But yes, he gets angry. Yes, he had never been a sleeper until he passes out, and it has taken a great deal of work on my part to get bedtime down. Disregard of risk? Just ask my mom, who last year found him climbing on the outside of a third-floor balcony at a condo we had rented for a weekend-mountain getaway.
As far as the depression:
- Persistent sad or irritable mood
- Loss of interest in activities once enjoyed
- Significant change in appetite or body weight
- Difficulty sleeping or oversleeping
- Physical agitation or slowing
- Loss of energy
- Feelings of worthlessness or inappropriate guilt
- Difficulty concentrating
- Recurrent thoughts of death or suicide
I don't see these... He doesn't get sad. Irritable, I suppose, yes. I just don't know. My boss mentioned that when his son was first diagnosed, he didn't believe it. His mother had been a classic manic-depressive. My boss told me that what he hates more than anything is when furniture is moved in his house. His mom always rearranged the furniture at home when she would start on a manic kick. He knows bipolar disorder, was raised by it and is now raising it. His son is 18, has overcome considerable odds and by all accounts will be a successful adult. At any rate, my boss was skeptical that his son's behavior was being put under the same umbrella as his mother's. He described to me a few more things that his son showed early on:
- Need for "justice" and would lose it if he felt that something was "unfair"
- Inability to distinguish between adults and children, in realms of familiarity and in discipline (see above, it was unfair that adults could do something he couldn't)
- Moodiness, turning into volitile tantrums
- Upset over imperfection (beat himself up for messing up)
So, it's all very interesting. They had me fill out another behavior survey, and I suppose I'll be hearing more about their verdict as they complete the report, which I should get the week of Nov. 7th.
On a total other, and way fun, note: The Kid and I had a pumpkin extravaganza last night. I had a pie pumkin and as yesterday was relatively cool, I decided it was okay to have the oven on for a few hours. I baked the pumpkin so that I could make one of my favorite cookie recipes (yummy, cakey pumpkin cookies that are really good for breakfast!!). I looked on line to find a recipe for pumkin bread or something else I could make with pumpkin, and came across this recipe for eyeball cupcakes. I just HAD to make them, even though they have no pumpkin in them. I think they came out pretty well, although they look nothing like the pictures... The Kid and I had a blast making them and licking our fingers while icing the cupcakes! I then invented a truly amazing side dish, mashed pumpkin and potato, w/ butter, salt, pepper and real maple syrum. Oh. My. God. It was so unbelieveably delish. I really should cook with The Kid more often, we had a blast with the pumpkin, and now we get to enjoy our spoils!!!
Monday, October 03, 2005
Ugh. Must. Post. Update...
I don't know where to begin here, or how long I will last, I'm incredibly tired and feeling honestly worn out... I guess I shall start with Wednesday.
We started The Kid's assessment at the University of Denver Neuropsychology Lab last Wednesday morning. It was a good meeting, by all accounts. The Kid went with a grad student to start a round of testing, another IQ test, but based on a different scale (and with different tasks) than the one taken at the school. While the Kid did that, I sat with the professor who went through the Kid's history. She was very thorough, we must have spent an hour alone on The Kid's behavior and infancy, all before we got to what is vexing us today. It was good to just put it all out there, that this is a pattern of behavior, and a pattern that has been there since day one.
We go again on Wednesdays for three more weeks. Results on October 17th...
Thursday we went to see the Shrink again. We haven't seen a positive effect of the Ritalin on The Kid. She was really concerned about his behavior on the drug (did I tell you about the sad day? The day when he was just sad?) and kindly scolded me for not contacting her at once after that. I'll take a scolding, at least she cares, right? And she's put him on some other drug that I really do care to know the name of but always just want to call it Allegra, which it is definitely not. Um, [racking brain] oh, Adderall XR. The XR means extended release, so the effects should last throughout the day.
I really do care very much which drug I am putting into my child's body, so please don't read that last paragraph wrong. I'm tired. It's been a long day.
The weekend was pretty darn good, where I'm going to leave off tonight. I think I've said this about 14,000,000 times above, but I'm tired. This morning was The Kid's first IEP Staffing meeting, and while it went well, I'm chewing over a lot of information right now, too much to tackle in a exhausted-post. So, I took this picture of the Earthquakes, who triumped over some other group of 5-years olds being coached, again, by some overbearing father... Grrr. Anyway, GO EARTHQUAKES!!!
We started The Kid's assessment at the University of Denver Neuropsychology Lab last Wednesday morning. It was a good meeting, by all accounts. The Kid went with a grad student to start a round of testing, another IQ test, but based on a different scale (and with different tasks) than the one taken at the school. While the Kid did that, I sat with the professor who went through the Kid's history. She was very thorough, we must have spent an hour alone on The Kid's behavior and infancy, all before we got to what is vexing us today. It was good to just put it all out there, that this is a pattern of behavior, and a pattern that has been there since day one.
We go again on Wednesdays for three more weeks. Results on October 17th...
Thursday we went to see the Shrink again. We haven't seen a positive effect of the Ritalin on The Kid. She was really concerned about his behavior on the drug (did I tell you about the sad day? The day when he was just sad?) and kindly scolded me for not contacting her at once after that. I'll take a scolding, at least she cares, right? And she's put him on some other drug that I really do care to know the name of but always just want to call it Allegra, which it is definitely not. Um, [racking brain] oh, Adderall XR. The XR means extended release, so the effects should last throughout the day.
I really do care very much which drug I am putting into my child's body, so please don't read that last paragraph wrong. I'm tired. It's been a long day.
The weekend was pretty darn good, where I'm going to leave off tonight. I think I've said this about 14,000,000 times above, but I'm tired. This morning was The Kid's first IEP Staffing meeting, and while it went well, I'm chewing over a lot of information right now, too much to tackle in a exhausted-post. So, I took this picture of the Earthquakes, who triumped over some other group of 5-years olds being coached, again, by some overbearing father... Grrr. Anyway, GO EARTHQUAKES!!!
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