Over at Autism.change.org, there's a lively debate about vaccines going on. As usual, there are a lot of people who don't know much about science but who appear to know everything about vaccines and autism. It's the usual. Nothing has changed. When will it? I don't know.
In the midst of the debate, I mentioned Andrew Wakefield's violation of scientific research ethics in taking blood at a children's birthday party. Utter creep factor aside, the practice of science is supposed to follow specific ethical rules. Touching a child--even asking a child a question--requires submission of your research protocol to your institute's ethical review board, approval from that board, written informed consent from the parent, and appropriate conditions under which the intervention, interview, or extraction of bodily fluids takes place.
Those consent forms also should--must--cover known risks of said intervention. And that takes me to the boy whose intestines were perforated a dozen times in what was an apparently unnecessary procedure that led to multiple, long-standing, serious health problems for the child. Guess who was involved? Yep, same fella.
I brought up these ethical lapses in the midst of that vaccine debate, and you know what? The folks who believe with almost reverent faith in the involvement of vaccines in autism etiology...dismissed these ethical defalcations out of hand. No. Big. Deal. One of them even said that she'd never had to learn about that kind of ethics or the ethics in the practice of science in her science classes. I think that was supposed to be an argument to support her point, but in my mind, it's just one more example of how science education in this country has, in many cases, been a dismal failure.
Yes, the same people who would point the finger at doctors/Big Pharma/WHO/CDC in a huge conspiracy that, according to the finger pointers, ends in the a priori expected deaths and permanent disability of millions of children just for the sake of money--the same people will shrug off as insignificant the established, known violations of scientific research ethics on the part of one of the deities of the MMR = Autism cult, violations that ended in harm. I won't even get into the incalculable harm that the initial MMR = autism paper has since caused, in spite of retractions of most of its authors, in spite of subsequent evidence--see above--of either willful ignorance or blind narcissism or both driving these ethical lapses.
Ethics matter. It matters that people who have anything to do with children have the appropriate protocols in place and approved, have the appropriate, fully informational consents, are in the right place at the right time for the intervention. No peer-reviewed journal will publish results of any work unless the authors guarantee institutional ethics approval and provide a signed statement to that effect with their submitted paper. That's how important ethics are. That's how important the appropriate conduct of scientific research is.
And I think it's telling that a certain group is completely willing to overlook such gross ethical oversights, such apparent willingness to dismiss ethics in the name of ambition, as something that is "OK" as long as it's in pursuit of the alleged "demons" that cause autism, or, better yet, in pursuit of a "cure," preferably while screaming out "mercury! toxins! heavy metals!" and dancing backwards around a fire in a hallucinogenic haze during the "treatment." From a DAN! practitioner who chelates a child to death to someone who countenances the perforation of a preschooler's intestines a dozen times in the name of science, this kind of harm is just A-OK because it's on the "right" side of the debate.
I don't know about you, but I have kind of an ethical problem with that.
A blog about parenting, working, worrying, science, writing, worrying, and autism.
Saturday, January 31, 2009
Friday, January 30, 2009
Oblivious?
Today, I had a conversation with someone I've known for two years. During that time, I've noted that this person doesn't seem to really register social cues and also seems to have an unusual, almost naive openness with others. She also happens to be quite bright and capable, with ambitions and drive that will lead to her success on what society considers "normal" terms.
And she's even talked to me before about her childhood, how tough it was, how she was "in trouble" a lot, how she didn't really seem to fit in. Even today, she's unusual, in an interesting way, and she seems to have moved past that whole "I got in trouble all the time because I was running with the wrong crowd" phase.
The entire time I've known this woman, I've thought of her as kind of unusual, possibly a little bit naive, maybe goofy or nerdy, maybe a little too open and honest, too vulnerable. I've also thought of her as an invariably kind, good-hearted person with a genuineness that you just don't meet with that much any more. The one thing--and I'm sure you've figured this out already--the one thing I didn't know about her was that she was diagnosed with Asperger's in high school. She just told me that today as we discussed the supports TH receives in his classes.
And now that I've written all of the above down in stark black on white, I realize how completely dull I've been. How could I have not recognized it? Even more important and more than a little embarrassing is how it's changed my perception of this woman. I thought of her before as socially naive and unaware, unable to read social cues to the point that she probably has annoyed people as a result. I've noted that when the two of us try to converse, it's almost like a ludicrous social skills practice between two socially impaired people--which, now that I know more, it really is.
The minute I found out that she has Asperger's, my entire impression of her shifted from slightly bemused and put off by our mutual awkwardness to total understanding and positivity. In that split second, I changed my attitude about her and about our interactions completely. I understood why we were so awkward when we talked, why her openness and ingenuousness seemed so out of sync with her obvious intelligence. My awareness of her traits is no different, but the difference in context has wrought a wholesale change in my attitude and understanding. It illustrates the power of knowledge, this transformation of mine. I've even had transient thoughts in the past that her unusualness seemed familiar. Yet, in my own, especially oblivious way, I never made the glaring connection.
It's odd, because I feel that when I see certain kids out in public, I recognize them as being like our son. Mr. DMFP and I will even lock eyes for a split second in mutual understanding that yes, that's one there. What's the tipoff? Often, it's physical, I think...flapping, toe walking, body posture that's all angles, a way of talking, the subject matter being talked about. The woman I learned to understand better today does none of these things. Yet her manifestations are really just as obvious--or should be--to anyone who knows what they're seeing, to anyone who understands.
And it leaves me wondering--with all of these obvious signs, why didn't I understand it a lot sooner?
And she's even talked to me before about her childhood, how tough it was, how she was "in trouble" a lot, how she didn't really seem to fit in. Even today, she's unusual, in an interesting way, and she seems to have moved past that whole "I got in trouble all the time because I was running with the wrong crowd" phase.
The entire time I've known this woman, I've thought of her as kind of unusual, possibly a little bit naive, maybe goofy or nerdy, maybe a little too open and honest, too vulnerable. I've also thought of her as an invariably kind, good-hearted person with a genuineness that you just don't meet with that much any more. The one thing--and I'm sure you've figured this out already--the one thing I didn't know about her was that she was diagnosed with Asperger's in high school. She just told me that today as we discussed the supports TH receives in his classes.
And now that I've written all of the above down in stark black on white, I realize how completely dull I've been. How could I have not recognized it? Even more important and more than a little embarrassing is how it's changed my perception of this woman. I thought of her before as socially naive and unaware, unable to read social cues to the point that she probably has annoyed people as a result. I've noted that when the two of us try to converse, it's almost like a ludicrous social skills practice between two socially impaired people--which, now that I know more, it really is.
The minute I found out that she has Asperger's, my entire impression of her shifted from slightly bemused and put off by our mutual awkwardness to total understanding and positivity. In that split second, I changed my attitude about her and about our interactions completely. I understood why we were so awkward when we talked, why her openness and ingenuousness seemed so out of sync with her obvious intelligence. My awareness of her traits is no different, but the difference in context has wrought a wholesale change in my attitude and understanding. It illustrates the power of knowledge, this transformation of mine. I've even had transient thoughts in the past that her unusualness seemed familiar. Yet, in my own, especially oblivious way, I never made the glaring connection.
It's odd, because I feel that when I see certain kids out in public, I recognize them as being like our son. Mr. DMFP and I will even lock eyes for a split second in mutual understanding that yes, that's one there. What's the tipoff? Often, it's physical, I think...flapping, toe walking, body posture that's all angles, a way of talking, the subject matter being talked about. The woman I learned to understand better today does none of these things. Yet her manifestations are really just as obvious--or should be--to anyone who knows what they're seeing, to anyone who understands.
And it leaves me wondering--with all of these obvious signs, why didn't I understand it a lot sooner?
Wednesday, January 28, 2009
Without my referral, I am nothing
Conversation today, probably one that millions of people suffering under HMO regimes across this great land of ours have experienced in the last 24 hours. Oh, for the balanced democracy of a PPO!:
Me: Hi, I got a message that I'm being referred to Dr. Urologia. I wanted to check to see if you all had sent the referral yet?
Nurse Perkypants: Yes! It's on Ms. I-Do-Referral's desk and should be processed. All you need to do is call and make the appointment!
Me: [to self: Mmmhmm, I'm sure it will be that easy]. [To Nurse PP]: OK! Thanks!
[Click]
Three hours later....
Me, after significant period on hold: Hi, I've been referred by my primary care physician to Dr. Urologia for an appointment.
Appt Dragon Lady: What ist thy insurance plan?
Me: The HMO from Hell, or HFrH, as we like to abbreviate it.
Appt. Dragon Lady: Well, hast thou a referral? If thou art on HFrH, we cans't make thy appointment without thy referral. [Translation: You do not exist to us unless your PCP confirms that you exist and, more important, that your bladder exists.]
Me: Yes, they said they've processed it. But just for the record, I technically do not need a referral because my insurance has a pay at point-of-service option.
Appt. Dragon Lady: Well, thou still needest thy referral. We shan't maketh thy appointment without thy referral in this, the kingdom of the urological speciality where Dr. Urologia reigns as queen.
Me: No. I do not. But anyway, I should.
Appt. Dragon Lady: [Pause. Pause. Pause.] I looketh. Dids't they at least giveth thee a referral number?
Me: No.
Appt. Dragon Lady: Well, I doth not see nary a referral for thee here!
[Dead silence. More dead silence. I feel my existence fading away, pending the transfer of said referral.]
Me: Well, I guess I'll just sit here and suffer until that it arrives! Hope I don't go septic! Thanks so much!
[Click]
I never had this kind of trouble in the Republic of PPO. Viva la Revolucion!
Me: Hi, I got a message that I'm being referred to Dr. Urologia. I wanted to check to see if you all had sent the referral yet?
Nurse Perkypants: Yes! It's on Ms. I-Do-Referral's desk and should be processed. All you need to do is call and make the appointment!
Me: [to self: Mmmhmm, I'm sure it will be that easy]. [To Nurse PP]: OK! Thanks!
[Click]
Three hours later....
Me, after significant period on hold: Hi, I've been referred by my primary care physician to Dr. Urologia for an appointment.
Appt Dragon Lady: What ist thy insurance plan?
Me: The HMO from Hell, or HFrH, as we like to abbreviate it.
Appt. Dragon Lady: Well, hast thou a referral? If thou art on HFrH, we cans't make thy appointment without thy referral. [Translation: You do not exist to us unless your PCP confirms that you exist and, more important, that your bladder exists.]
Me: Yes, they said they've processed it. But just for the record, I technically do not need a referral because my insurance has a pay at point-of-service option.
Appt. Dragon Lady: Well, thou still needest thy referral. We shan't maketh thy appointment without thy referral in this, the kingdom of the urological speciality where Dr. Urologia reigns as queen.
Me: No. I do not. But anyway, I should.
Appt. Dragon Lady: [Pause. Pause. Pause.] I looketh. Dids't they at least giveth thee a referral number?
Me: No.
Appt. Dragon Lady: Well, I doth not see nary a referral for thee here!
[Dead silence. More dead silence. I feel my existence fading away, pending the transfer of said referral.]
Me: Well, I guess I'll just sit here and suffer until that it arrives! Hope I don't go septic! Thanks so much!
[Click]
I never had this kind of trouble in the Republic of PPO. Viva la Revolucion!
Tuesday, January 27, 2009
How about I poke you in the eye?
There is a specials (e.g., art, music, or P.E.) teacher at a school near where we live who doesn't quite seem to understand or know how to handle special needs children. There have been incidents, one involving a child's dismissal from the specials class for two weeks without consultation with any of the adults involved in the child's general education, including the child's parents.
I now realize why this particular specials teacher is having such incidents. Her take on a recent situation involving a special needs child in her class was that she'd be on board only if the child in question would "look (her) in the eye" when telling her things or explaining that he was having a problem.
I'm sorry, but can someone please tell me what year this is? Is this 1989 or 2009? Didn't we leave "look me in the eye" at an abandoned rest stop somewhere on the road to enlightenment? Why is it OK to demand of a child something that we all know good and well can actually be physically painful for them?
In many societies, looking people in the eye is considered unutterably rude. Forcing a child to do that isn't a "general human communication" issue like moving your mouth when you speak, but a societal and cultural issue. It is something that is not required for appropriate and successful communication. It is not required to indicate respect and is considered offensive across large swaths of planet Earth.
This teacher is demanding that this child behave in a way that suits her cultural expectations, and she's asking for something that is extremely uncomfortable for this child. If her cultural background required people to hop on one foot for 15 minutes to indicate respect, would it be OK for her to require that of a child who cannot walk without pain? If not, why is it OK for her to apply this cultural expectation to a child who cannot look without pain?
Perhaps an illustration of how it feels to look someone in the eye when it hurts to do so would help. Where's a pointy stick when you need one?
I now realize why this particular specials teacher is having such incidents. Her take on a recent situation involving a special needs child in her class was that she'd be on board only if the child in question would "look (her) in the eye" when telling her things or explaining that he was having a problem.
I'm sorry, but can someone please tell me what year this is? Is this 1989 or 2009? Didn't we leave "look me in the eye" at an abandoned rest stop somewhere on the road to enlightenment? Why is it OK to demand of a child something that we all know good and well can actually be physically painful for them?
In many societies, looking people in the eye is considered unutterably rude. Forcing a child to do that isn't a "general human communication" issue like moving your mouth when you speak, but a societal and cultural issue. It is something that is not required for appropriate and successful communication. It is not required to indicate respect and is considered offensive across large swaths of planet Earth.
This teacher is demanding that this child behave in a way that suits her cultural expectations, and she's asking for something that is extremely uncomfortable for this child. If her cultural background required people to hop on one foot for 15 minutes to indicate respect, would it be OK for her to require that of a child who cannot walk without pain? If not, why is it OK for her to apply this cultural expectation to a child who cannot look without pain?
Perhaps an illustration of how it feels to look someone in the eye when it hurts to do so would help. Where's a pointy stick when you need one?
Monday, January 26, 2009
He's baaaaaaack
True confessions: When the developmental pediatrician who diagnosed TH was doing her evaluation, my biggest fear--I mean, real fear--was that somehow, what I knew was autism would be diagnosed as ADHD. It terrified me. She said the term "ADHD" in passing during one of our many diagnostic visits, and a flood of adrenaline swept over me, even though what she said was, "Well, it's certainly not ADHD."
Yes, even though autism is a "monster" that must be vanquished so that the "good kid" lying inside the monster can get out, even though autism is a "horrific disease" that burdens parents and society, I was sitting there, secretly praying that it would be an autism diagnosis over an ADHD diagnosis.
His diagnosis was Asperger's--not mild Asperger's, but way-on-the-scale Asperger's. At the time, he would have fit the criteria for "classic" autism except that he began talking--not communicating, really, but talking--"on schedule."
I realize that not everyone has it as easy as we do when it comes to autism. TH is consistently in a cheerful mood, hasn't had a meltdown in about three years, and is developing now by leaps and bounds. It's true that "developmental delay" doesn't mean "it's never going to happen," and for TH, plenty of things are happening now. A few years later than most, but they're still happening.
Yet, during that diagnostic period, he was having meltdowns, epic emotional dissolutions that only I, the TH Whisperer, seemed to be able to piece back together. And he fixated on self harm, talking about it all the time, wanting to die, punishing himself when he hadn't done anything wrong, hitting himself. Even in the face of that, even not realizing that eventually, these behaviors would pass, I still wanted "autism" over "ADHD."
And here's why: I've taught many kids with ADHD, and one thing they lack completely is a coping mechanism, a way to self calm, smooth their emotional waters. TH could--and still does--flap or rock or vocalize. The only coping mechanism anyone's found that really works on ADHD is medications. My crazy maternal reasoning was that with autism, no one would offer meds, no one would force the issue, no teachers would be sending notes home requesting that we consider it because there just aren't any to consider strictly for autism. ADHD is different. There are meds. They have side effects that I don't like. The kids who take them don't like them. Teachers want them. It sets up a struggle between what's going to make the child fit in and what is going to make the child feel like himself.
One thing that also seems effective in ameliorating ADHD is a tonsillectomy. Since his operation last Thursday, Dubya has been a quiet little fellow, pleasant to be around, silently building Legos, lying motionless during reading time and movies, drawing peacefully, behaving courteously. It was...heavenly. It was...like a child with ADHD who was on his meds.
And now, he's baaaaaack. Talking incessantly, even though we can't understand him because his voice is still post-T&A weird. Moving constantly, uncontrollably. Impulse control is a dream denied. We're back to Dubya in trouble, Dubya sent to his room, Dubya making all the useless noise just to be making noise, Dubya interrupting, Dubya doing what we just told him not to do, Dubya perseverating and annoying his brothers (yes, even TH), Dubya being Dubya.
Mr. DMFP doesn't know it yet, but I'm seriously considering medications. His teacher has been having problems with him all year. It's hard to get this across, but he really, truly is Out. Of. Control. Impulsive to the point of stupidity, of harming himself by accident. And of course, with all of this, all the negativity, the getting in trouble, the isolation from family during the troubled times...Dubya is unhappy. Already, in the past two days, we've had about a hundred crying explosions, loud, scratchy sobbing over minor incidents, the product of someone who has almost no emotional barrier, a fair match for his utter lack of impulse control. A boy who cannot integrate anything, so he turns to constant motion, only to find that his sole effort at solace gets him in trouble with the rest of the world.
And that's really why I never wanted anyone to tell me that one of my children has ADHD. The kids I've known with it have been, to a child, unhappy, edgy, agitated in their skins, uncomfortably square pegs forced into society's sometimes unnecessarily round holes. TH and his Asperger's? TH, right now, is happy. And since he doesn't have ADHD, his chances of staying that way are comparatively good. Dubya? I just don't know. The unhappiness of everyone around him, directed at him, can only be compounding his own monumental discomfort. I've asked it before, and I'm wondering about what now seems to be the inevitable: Is medicating him so that he becomes the "good boy" inside the ADHD monster the way to achieve 360-degree satisfaction?
Yes, even though autism is a "monster" that must be vanquished so that the "good kid" lying inside the monster can get out, even though autism is a "horrific disease" that burdens parents and society, I was sitting there, secretly praying that it would be an autism diagnosis over an ADHD diagnosis.
His diagnosis was Asperger's--not mild Asperger's, but way-on-the-scale Asperger's. At the time, he would have fit the criteria for "classic" autism except that he began talking--not communicating, really, but talking--"on schedule."
I realize that not everyone has it as easy as we do when it comes to autism. TH is consistently in a cheerful mood, hasn't had a meltdown in about three years, and is developing now by leaps and bounds. It's true that "developmental delay" doesn't mean "it's never going to happen," and for TH, plenty of things are happening now. A few years later than most, but they're still happening.
Yet, during that diagnostic period, he was having meltdowns, epic emotional dissolutions that only I, the TH Whisperer, seemed to be able to piece back together. And he fixated on self harm, talking about it all the time, wanting to die, punishing himself when he hadn't done anything wrong, hitting himself. Even in the face of that, even not realizing that eventually, these behaviors would pass, I still wanted "autism" over "ADHD."
And here's why: I've taught many kids with ADHD, and one thing they lack completely is a coping mechanism, a way to self calm, smooth their emotional waters. TH could--and still does--flap or rock or vocalize. The only coping mechanism anyone's found that really works on ADHD is medications. My crazy maternal reasoning was that with autism, no one would offer meds, no one would force the issue, no teachers would be sending notes home requesting that we consider it because there just aren't any to consider strictly for autism. ADHD is different. There are meds. They have side effects that I don't like. The kids who take them don't like them. Teachers want them. It sets up a struggle between what's going to make the child fit in and what is going to make the child feel like himself.
One thing that also seems effective in ameliorating ADHD is a tonsillectomy. Since his operation last Thursday, Dubya has been a quiet little fellow, pleasant to be around, silently building Legos, lying motionless during reading time and movies, drawing peacefully, behaving courteously. It was...heavenly. It was...like a child with ADHD who was on his meds.
And now, he's baaaaaack. Talking incessantly, even though we can't understand him because his voice is still post-T&A weird. Moving constantly, uncontrollably. Impulse control is a dream denied. We're back to Dubya in trouble, Dubya sent to his room, Dubya making all the useless noise just to be making noise, Dubya interrupting, Dubya doing what we just told him not to do, Dubya perseverating and annoying his brothers (yes, even TH), Dubya being Dubya.
Mr. DMFP doesn't know it yet, but I'm seriously considering medications. His teacher has been having problems with him all year. It's hard to get this across, but he really, truly is Out. Of. Control. Impulsive to the point of stupidity, of harming himself by accident. And of course, with all of this, all the negativity, the getting in trouble, the isolation from family during the troubled times...Dubya is unhappy. Already, in the past two days, we've had about a hundred crying explosions, loud, scratchy sobbing over minor incidents, the product of someone who has almost no emotional barrier, a fair match for his utter lack of impulse control. A boy who cannot integrate anything, so he turns to constant motion, only to find that his sole effort at solace gets him in trouble with the rest of the world.
And that's really why I never wanted anyone to tell me that one of my children has ADHD. The kids I've known with it have been, to a child, unhappy, edgy, agitated in their skins, uncomfortably square pegs forced into society's sometimes unnecessarily round holes. TH and his Asperger's? TH, right now, is happy. And since he doesn't have ADHD, his chances of staying that way are comparatively good. Dubya? I just don't know. The unhappiness of everyone around him, directed at him, can only be compounding his own monumental discomfort. I've asked it before, and I'm wondering about what now seems to be the inevitable: Is medicating him so that he becomes the "good boy" inside the ADHD monster the way to achieve 360-degree satisfaction?
Saturday, January 24, 2009
What a week
It started off on a high and ended with a few thuds.
Dubya is doing really well. No trauma, no hurling, and we're on post-op day 10, so I'm moving from cautiously optimistic to just plain old optimistic. An occasional complaint of ear pain (it gets referred from the throat), probably some weight loss, but he's happy as a six-year-old prone to emotional lability can be because he's gotten no fewer than five new Lego sets during his recuperation.
Now, we catch up on his homework. This brings out that abovementioned lability, but it must be done! That's one of the thuds.
And, as a sort of capper--ha...ha...ahem--to the week, the tooth I had crowned in December got "hot"--as in sensitive to hot and cold and pressure kind of hot--and, yep...ROOT CANAL. Went in yesterday, they poked around, and then said, "Well, let's do the root canal." Every time I have a tooth crisis, I have not eaten in hours. I don't know why that is, but then I get to sit through the five shots in the mouth and the incessant drilling and poking and scraping sounds (eek!) as they gouge around in four tooth roots to extract the nerves, all the time with the lowest possible blood sugar a woman can have. Seriously. When I get up, I'm staggering around like my blood alcohol level is 0.4, grabbing the walls for balance. The assistant was literally dancing around behind me, ready to catch me if I fell.
At least they saved the stupid crown. I paid $1200 for that thing, and I didn't want to buy a new one. That's another thud. On a slightly higher note, the endodontist actually said, "I'm gonna need a Hedstrom over here," which really made me laugh in the middle of a root canal. In spite of the dam and clamp having been installed, I almost tried to ask, "Does it have a teardrop cross section?" If you're like us and have watched 6 million iterations of Finding Nemo, that bit of dialogue is now playing out in your head in its entirety. If this does not describe you, you may consider yourself lucky.
So what was the high? Need you ask? During the inaugural, I was at home with Dubya (T&A boy), Little (reactive airway boy), and then, right as Obama moved to the podium for the swearing in, a nurse named Veronica. She was there to take my vitals and some fluids for my life insurance application. [As a side note, I'm almost 41 years old, but as I completed the phone interview about my medical history--which they promised would take 20 minutes and took almost an hour--I began to think that I sound more like a centenarian. ] Anyway, Veronica sat and took my blood pressure and blood and weighed me while we waited for the swearing in to begin.
And then, as the swearing in took place, and then as President Obama (PRESIDENT OBAMA) began his speech, Veronica stayed. She was finished with her work, she had another appointment to make, but she stayed. And she and I and my two younger sons stood and sat--I gave her a chair but my excitement kept me on my feet--and watched this moment happen, in its entirety. And it seemed like a fitting microcosm of what we were seeing on the screen, the four of us, some strangers to each other and some closely known, watching this breathtaking moment in history unfold.
That, my friends, was a high that no number of week-ending thuds could bring down. I'm still riding on it. That, and some Motrin, but I think it's the moment in history that really has me feeling no pain.
Dubya is doing really well. No trauma, no hurling, and we're on post-op day 10, so I'm moving from cautiously optimistic to just plain old optimistic. An occasional complaint of ear pain (it gets referred from the throat), probably some weight loss, but he's happy as a six-year-old prone to emotional lability can be because he's gotten no fewer than five new Lego sets during his recuperation.
Now, we catch up on his homework. This brings out that abovementioned lability, but it must be done! That's one of the thuds.
And, as a sort of capper--ha...ha...ahem--to the week, the tooth I had crowned in December got "hot"--as in sensitive to hot and cold and pressure kind of hot--and, yep...ROOT CANAL. Went in yesterday, they poked around, and then said, "Well, let's do the root canal." Every time I have a tooth crisis, I have not eaten in hours. I don't know why that is, but then I get to sit through the five shots in the mouth and the incessant drilling and poking and scraping sounds (eek!) as they gouge around in four tooth roots to extract the nerves, all the time with the lowest possible blood sugar a woman can have. Seriously. When I get up, I'm staggering around like my blood alcohol level is 0.4, grabbing the walls for balance. The assistant was literally dancing around behind me, ready to catch me if I fell.
At least they saved the stupid crown. I paid $1200 for that thing, and I didn't want to buy a new one. That's another thud. On a slightly higher note, the endodontist actually said, "I'm gonna need a Hedstrom over here," which really made me laugh in the middle of a root canal. In spite of the dam and clamp having been installed, I almost tried to ask, "Does it have a teardrop cross section?" If you're like us and have watched 6 million iterations of Finding Nemo, that bit of dialogue is now playing out in your head in its entirety. If this does not describe you, you may consider yourself lucky.
So what was the high? Need you ask? During the inaugural, I was at home with Dubya (T&A boy), Little (reactive airway boy), and then, right as Obama moved to the podium for the swearing in, a nurse named Veronica. She was there to take my vitals and some fluids for my life insurance application. [As a side note, I'm almost 41 years old, but as I completed the phone interview about my medical history--which they promised would take 20 minutes and took almost an hour--I began to think that I sound more like a centenarian. ] Anyway, Veronica sat and took my blood pressure and blood and weighed me while we waited for the swearing in to begin.
And then, as the swearing in took place, and then as President Obama (PRESIDENT OBAMA) began his speech, Veronica stayed. She was finished with her work, she had another appointment to make, but she stayed. And she and I and my two younger sons stood and sat--I gave her a chair but my excitement kept me on my feet--and watched this moment happen, in its entirety. And it seemed like a fitting microcosm of what we were seeing on the screen, the four of us, some strangers to each other and some closely known, watching this breathtaking moment in history unfold.
That, my friends, was a high that no number of week-ending thuds could bring down. I'm still riding on it. That, and some Motrin, but I think it's the moment in history that really has me feeling no pain.
Tuesday, January 20, 2009
Finding a common ground
This post isn't about Barack Obama, but it is about his chronicled behaviors. He's known as someone who reaches across the aisle, who chooses pragmatics over politics, who brushes off differences to find commonalities.
In that spirit and on a much smaller scale, I find myself, as a member of our school's Family Action Network, doing the same thing. My feelings about Thoughtful House, about Jenny McCarthy's writings about her "cured" but still autistic little boy--anyone who reads here knows what I think: Wakefield is a charlatan who draws blood for money, literally, from hapless children at birthday parties (there's something about autism studies that seems to make people abandon research ethics completely), and Jenny McCarthy should probably at least get some relevant eddymacation--and not from Google U--before she tries to write another book. And let's not get into her transformation from "Indigo mom" to "Warrior mom." As much as I like a good argument, I don't like the idea of fighting just to be fighting, and I don't believe in fighting against non-existent foes. I don't need to be a warrior for my children. I need to be their mother. Plain and simple.
So it was that I was sitting in our inaugural network meeting with four other moms. As a refresher, the Family Action Network is something we're establishing in our community as a resource and support network of families for families with special needs. It's easy to start one--just do it. Contact some parents you know and meet. We're planning events for our back-to-school and orientation days at our school, including tours of the facilities specific to special needs kids, and we're also putting together a resource library, information packet, and other resources for families who need them.
Three of the moms at our table were autism moms, as Kristina would say, all great moms dedicated to doing the best for their child. Of course, what "best" is varies considerably from person to person. And it was really only a matter of seconds before terms like "GFCF" and "vaccines" started flying around. I'm older now, and that has strangely made me more circumspect than I used to be. Plus, as I told myself, we're there not to argue about causation or about how we parent, but to help other parents and ourselves navigate the special needs waters at our school. So when one of the moms asked me if I'd ever been to Thoughtful House, instead of hurling all over the table at the very idea, I simply said, "No. We've not been there." And when one of the moms referred to us in a missive as "Warrior Moms," I reminded myself, channeling Barack Obama and practical people everywhere, the other 99% of the words in that missive were words of common ground, the places where we meet.
It will continue to happen. Thoughtful House is sited in our community. We're a "health aware" area packed with hypereducated people who are quite likely to pursue biomed, to eye standard medicine askance, to find comfort outside of the mainstream. Yes, I'm biting my tongue about some things, even though at the same meeting, I also recommended fish oil and a therapist we like. They may have been biting their own tongues as I did that, thinking "Fish oil!? Not!" And I'm glad we were all sitting around biting ourselves internally because right here, right now, it's not about who's doing what diet or buying into whose ideas, it's about what we can do for autistic kids and their families, where we live.
In that spirit and on a much smaller scale, I find myself, as a member of our school's Family Action Network, doing the same thing. My feelings about Thoughtful House, about Jenny McCarthy's writings about her "cured" but still autistic little boy--anyone who reads here knows what I think: Wakefield is a charlatan who draws blood for money, literally, from hapless children at birthday parties (there's something about autism studies that seems to make people abandon research ethics completely), and Jenny McCarthy should probably at least get some relevant eddymacation--and not from Google U--before she tries to write another book. And let's not get into her transformation from "Indigo mom" to "Warrior mom." As much as I like a good argument, I don't like the idea of fighting just to be fighting, and I don't believe in fighting against non-existent foes. I don't need to be a warrior for my children. I need to be their mother. Plain and simple.
So it was that I was sitting in our inaugural network meeting with four other moms. As a refresher, the Family Action Network is something we're establishing in our community as a resource and support network of families for families with special needs. It's easy to start one--just do it. Contact some parents you know and meet. We're planning events for our back-to-school and orientation days at our school, including tours of the facilities specific to special needs kids, and we're also putting together a resource library, information packet, and other resources for families who need them.
Three of the moms at our table were autism moms, as Kristina would say, all great moms dedicated to doing the best for their child. Of course, what "best" is varies considerably from person to person. And it was really only a matter of seconds before terms like "GFCF" and "vaccines" started flying around. I'm older now, and that has strangely made me more circumspect than I used to be. Plus, as I told myself, we're there not to argue about causation or about how we parent, but to help other parents and ourselves navigate the special needs waters at our school. So when one of the moms asked me if I'd ever been to Thoughtful House, instead of hurling all over the table at the very idea, I simply said, "No. We've not been there." And when one of the moms referred to us in a missive as "Warrior Moms," I reminded myself, channeling Barack Obama and practical people everywhere, the other 99% of the words in that missive were words of common ground, the places where we meet.
It will continue to happen. Thoughtful House is sited in our community. We're a "health aware" area packed with hypereducated people who are quite likely to pursue biomed, to eye standard medicine askance, to find comfort outside of the mainstream. Yes, I'm biting my tongue about some things, even though at the same meeting, I also recommended fish oil and a therapist we like. They may have been biting their own tongues as I did that, thinking "Fish oil!? Not!" And I'm glad we were all sitting around biting ourselves internally because right here, right now, it's not about who's doing what diet or buying into whose ideas, it's about what we can do for autistic kids and their families, where we live.
Monday, January 19, 2009
Post-T&A breath
Yikes.
Everything they say about the post-T&A dragon breath is absolutely true. TH, who has an olfactory sense to rival that of a young, ovulating female, sensed it two days ago. Now, even an olfactory-deficient post-menopausal woman would pick up on this. It permeates the living room. We feel for TH, who sleeps next to Dubya and already has a history of complaining about Dubya's morning breath. Now, he has to deal with Dubya's morning, afternoon, and evening breath. Luckily, tomorrow's a school day for TH, and he can escape the miasma.
While I have this bit of fun at the expense of my middle son, I have to add that he's been a real little trouper. Although he denies (as the MDs like to say) current pain, we can tell he's feeling draggy because...he's draggin'. This is our ADHD boy, the one who literally will bounce off of walls, furniture, floors, ceilings, who can't stop talking, even when you're sternly asking him to stop talking because you're on the phone with the cable repairman arguing fervently for a specific time rather than a day-long window that would require you to have your ageing in-laws sitting around your house for several hours or you to take off those hours from work, burdening the taxpayers of this nation.
That child has barely spoken a word since Thursday.
Honestly, it's been kind of nice and quiet around here even though we've all been together at home since Friday. There have been times when we've wished for an "off" switch for Dubya. I guess we've found a temporary one in the T&A.
The "bad" days--the scabs-falling-off-days--loom, maybe Thursday or Friday. After that, it's the healing road with more ice cream (which he's largely declining), more resting, more quiet. And then, as his kindergarten teacher so aptly described him, our "complicated little dynamo" will probably be back to his old, bouncing, whirling, incessantly chattering self. I'll take that over this dragon breathing, passive, pale little creature any old day. Plus, I sort of miss the multitasking challenge of arguing on the phone while arguing in real life, in both cases with an intractable opponent.
Everything they say about the post-T&A dragon breath is absolutely true. TH, who has an olfactory sense to rival that of a young, ovulating female, sensed it two days ago. Now, even an olfactory-deficient post-menopausal woman would pick up on this. It permeates the living room. We feel for TH, who sleeps next to Dubya and already has a history of complaining about Dubya's morning breath. Now, he has to deal with Dubya's morning, afternoon, and evening breath. Luckily, tomorrow's a school day for TH, and he can escape the miasma.
While I have this bit of fun at the expense of my middle son, I have to add that he's been a real little trouper. Although he denies (as the MDs like to say) current pain, we can tell he's feeling draggy because...he's draggin'. This is our ADHD boy, the one who literally will bounce off of walls, furniture, floors, ceilings, who can't stop talking, even when you're sternly asking him to stop talking because you're on the phone with the cable repairman arguing fervently for a specific time rather than a day-long window that would require you to have your ageing in-laws sitting around your house for several hours or you to take off those hours from work, burdening the taxpayers of this nation.
That child has barely spoken a word since Thursday.
Honestly, it's been kind of nice and quiet around here even though we've all been together at home since Friday. There have been times when we've wished for an "off" switch for Dubya. I guess we've found a temporary one in the T&A.
The "bad" days--the scabs-falling-off-days--loom, maybe Thursday or Friday. After that, it's the healing road with more ice cream (which he's largely declining), more resting, more quiet. And then, as his kindergarten teacher so aptly described him, our "complicated little dynamo" will probably be back to his old, bouncing, whirling, incessantly chattering self. I'll take that over this dragon breathing, passive, pale little creature any old day. Plus, I sort of miss the multitasking challenge of arguing on the phone while arguing in real life, in both cases with an intractable opponent.
Saturday, January 17, 2009
A post-T&A honeymoon period
We're in that phase post tonsillectomy in which the sun is shining, the ice cream's good, the pain is non-existent, and Dubya's building Lego sets. By all accounts, however, the sun will set in a couple of days, bringing darkness and pain and scabs that fall off bit by bit, radiating their painful essence to the ears and making people throw up. As a realistically optimistic pessimist, I cannot help but peer into the near future while still enjoying the moment.
In other news, the surgical wounds from tonsil removal are gross. And I say that as someone who, well... let's just say that even the word "maggots" does not gross me out much.
And in completely unrelated news, Mr. DMFP IM'd me this YouTube link the other day with the message, "The boys would like this." I played it for "the boys," and we watched several minutes of it as I exclaimed something to the effect of "WTF was your father thinking? This is totally inappropriate," except in more child-appropriate language. Turns out, he was right. The boys did like it. If you haven't seen it already--and 40 million-plus people have--you should watch it. The people commenting behind the camera are entertaining, especially the American, who makes several dazzling comments that demonstrate a definite flair for the obvious.
In other news, the surgical wounds from tonsil removal are gross. And I say that as someone who, well... let's just say that even the word "maggots" does not gross me out much.
And in completely unrelated news, Mr. DMFP IM'd me this YouTube link the other day with the message, "The boys would like this." I played it for "the boys," and we watched several minutes of it as I exclaimed something to the effect of "WTF was your father thinking? This is totally inappropriate," except in more child-appropriate language. Turns out, he was right. The boys did like it. If you haven't seen it already--and 40 million-plus people have--you should watch it. The people commenting behind the camera are entertaining, especially the American, who makes several dazzling comments that demonstrate a definite flair for the obvious.
Thursday, January 15, 2009
Dubya has now lost his T&A
Up at 5 a.m. this morning--well, and also at 1, 2, 3, and 4 a.m. because whenever I have to set an alarm, I stay alarmed about it all night and repeatedly wake up--anyway, up at 5 a.m. and...into the car, driving with my fearful 6 year old into the dark night of a not-yet-dawned day. I was mainlining caffeine, he was gripping his 6-year-old "fuzzy" and worrying.
"Mama," he asked me from the darkened back seat. We don't often drive around in the dark because some of us are quite young and keep the rest of us indoors during the dark times; thus, it was just plain weird to be driving around in the dark with him. "Mama, tell me again what is the worst I can expect?"
How to answer that? We'd (possibly stupidly) canvassed various parents for their horror stories of tonsillectomies and adenoidectomies--T&A in ENT parlance, and yes, they say that with a straight face--and their T&A horror stories ranged from "she didn't need a single pain med" to "he was hurling on day 7 because he was crying so hard from the pain." So, what's the worst he could expect?
I wiggled out of it by answering a different question: What's the most realistic you can expect? "Some pain," I said, "But we're getting narcotics for you. I'd say that the pain is the thing we have to be most careful about, just try to stay on top of it."
Strangely enough, he wasn't as worried about the pain as he was about the nosebleed that the tad-too-blunt nurse graphically described in his presence when we confirmed that he'd need a T&A. I have to add that at the same time, she handed us a booklet called something like, "Joey Gets a T&A." No lie.
He came through. He's apparently like me in that finding a vein to tap for the i.v. is harder than finding a functioning neuron in Sarah Palin's brain during a Katie Couric interview, and they had to do three or four tries before they got it in. Luckily, he was already out cold for that. Now, he's home, sampling various soft, cold treats, free of all T&A, a survivor of two small nosebleeds that "weren't that bad after all," and pretty damned unhappy about the way his throat feels. He also hasn't changed much since yesterday: After seeing a commercial for a Legos Star Wars set that he somehow does not yet own, he began arguing persuasively, croakily, that he had earned that for bravery in the line of surgical T&A duty.
I guess losing your T&A with open-eyed courage might warrant the purchase of some German-made, mind-teasing plastic. Me? I'd just be happy to have someone administering codeine to me every four hours.
"Mama," he asked me from the darkened back seat. We don't often drive around in the dark because some of us are quite young and keep the rest of us indoors during the dark times; thus, it was just plain weird to be driving around in the dark with him. "Mama, tell me again what is the worst I can expect?"
How to answer that? We'd (possibly stupidly) canvassed various parents for their horror stories of tonsillectomies and adenoidectomies--T&A in ENT parlance, and yes, they say that with a straight face--and their T&A horror stories ranged from "she didn't need a single pain med" to "he was hurling on day 7 because he was crying so hard from the pain." So, what's the worst he could expect?
I wiggled out of it by answering a different question: What's the most realistic you can expect? "Some pain," I said, "But we're getting narcotics for you. I'd say that the pain is the thing we have to be most careful about, just try to stay on top of it."
Strangely enough, he wasn't as worried about the pain as he was about the nosebleed that the tad-too-blunt nurse graphically described in his presence when we confirmed that he'd need a T&A. I have to add that at the same time, she handed us a booklet called something like, "Joey Gets a T&A." No lie.
He came through. He's apparently like me in that finding a vein to tap for the i.v. is harder than finding a functioning neuron in Sarah Palin's brain during a Katie Couric interview, and they had to do three or four tries before they got it in. Luckily, he was already out cold for that. Now, he's home, sampling various soft, cold treats, free of all T&A, a survivor of two small nosebleeds that "weren't that bad after all," and pretty damned unhappy about the way his throat feels. He also hasn't changed much since yesterday: After seeing a commercial for a Legos Star Wars set that he somehow does not yet own, he began arguing persuasively, croakily, that he had earned that for bravery in the line of surgical T&A duty.
I guess losing your T&A with open-eyed courage might warrant the purchase of some German-made, mind-teasing plastic. Me? I'd just be happy to have someone administering codeine to me every four hours.
Wednesday, January 14, 2009
Ambition
When TH grows up, he wants to be...
a paleontologist;
a rock star; and
a comics creator.
This is an improvement over what he wanted to be the last time I asked, which was, "Nothing." Now, thanks to dinosaurs, electric guitar, and Bill Waterston, he's developed some ambition. He will, he continues to assure us, live with us when he's grown. I have to say I'm looking forward to living with a comics-creating, paleontologically minded rock star, but we're going to have to add on to the house. Where will we put all the dinosaurs? The soundproof room? The light table?
Dubya wants to be "a police." End of story. He also still intends to reside with us as an adult, so the rock star will have built-in security.
Little has yet to express an opinion. But he does pretend to be a whale when he's in the bathtub and run around the house in imitation of Dubya, telling us all we're under arrest, and that's good enough for me. Around here, "playing pretend" is an ambition achieved.
a paleontologist;
a rock star; and
a comics creator.
This is an improvement over what he wanted to be the last time I asked, which was, "Nothing." Now, thanks to dinosaurs, electric guitar, and Bill Waterston, he's developed some ambition. He will, he continues to assure us, live with us when he's grown. I have to say I'm looking forward to living with a comics-creating, paleontologically minded rock star, but we're going to have to add on to the house. Where will we put all the dinosaurs? The soundproof room? The light table?
Dubya wants to be "a police." End of story. He also still intends to reside with us as an adult, so the rock star will have built-in security.
Little has yet to express an opinion. But he does pretend to be a whale when he's in the bathtub and run around the house in imitation of Dubya, telling us all we're under arrest, and that's good enough for me. Around here, "playing pretend" is an ambition achieved.
Sunday, January 11, 2009
On books and kindling
Over at Amazon.com these days, you'll find offers on a little gizmo called Kindle. It's an "amazing wireless reading device," and Amazon promises you "over" 200,000 titles and something that looks and reads like real paper. One big-time reviewer is blurbed as having said, "This is the future of book reading." It is currently sold out.
On the home front, my father-in-law, who is a major patron of libraries in big, monetary ways, has gone to conferences at which the warnings are dire. Paper books are coming to an end. It will all be electronic. It's good though! they assure us. It's saving trees!
I believe it. I believe it saves trees, although it is, still, electronics and electronics manufacturing on its own is a messy, polluting business.
I just don't believe any of the rest of it. I refuse.
I've already made clear on here how deeply I believe in the importance of reading. Even a logorrheic like me can find it hard to articulate all the reasons that reading is so essential. But lying in my bed on a rare lazy Sunday yesterday, looking around my bedroom at the many bookshelves, laden with hundreds of books that have comforted me like nothing else can during my worst times, turning my head to see the several stacks on my bedside table, the several stacks on my husband's bedside table, I suddenly became able to articulate quite clearly why Real. Books. Still. Matter.
Do you remember your childhood? Mine had many memorable aspects, but one that never changes with the perspective of age and time is the way I spent it looking at books. I would browse my parents bookshelves, sometimes for hours. It was a good time for book jackets in the 1970s--lurid, highly colored or abstractly bizarre--and it's no lie to say that I often would select a book based simply on its cover. Among the hundreds, probably thousands, of books my parents had--I never had to go to a library to research anything even in those pre-Internet days--there were titles I saw again and again, titles that stay with me to this day, playing like a visual record of book binding in my head.
Look Homeward Angel. Cien Años de Soledad. The World According to Garp. The Frogs. World Religions. The Agony and the Ecstasy. Les Miserables. Pride and Prejudice. Jude the Obscure. Ulysses. Robert and Elizabeth Browning. George Washington. A Latin primer. Shakespeare. Greek mythology. Books of history, biography, literature, science. And on and on. What a pleasure just to browse on a lonely, quiet day, to reach out and abstract an intriguing volume, to turn it over, feel its age, its woven binding, the crispiness of fragile yellowed paper, to see the type, turn a page, many pages, to get lost inside its world.
Had I not had those tangible, captivating book covers with their mysterious yet somehow meaningful titles there, literally at my fingertips, attracting my young mind, drawing me in and teasing my curiosity...well, I really do shudder when I think about the void that would have been without them. What if all my parents had lying there in that house, what if all I could see as I look around my bedroom today, what if all there were for me to reach for as my greatest comforters--what if it were all collated, coldly, electronically, invisibly, lying trapped within a grey, comfortless, handheld device called Kindle? Is this the chilly fate of future generations? Is this all they will have to ponder on a lonely, quiet Sunday afternoon?
It's a prospect that leaves me cold.
On the home front, my father-in-law, who is a major patron of libraries in big, monetary ways, has gone to conferences at which the warnings are dire. Paper books are coming to an end. It will all be electronic. It's good though! they assure us. It's saving trees!
I believe it. I believe it saves trees, although it is, still, electronics and electronics manufacturing on its own is a messy, polluting business.
I just don't believe any of the rest of it. I refuse.
I've already made clear on here how deeply I believe in the importance of reading. Even a logorrheic like me can find it hard to articulate all the reasons that reading is so essential. But lying in my bed on a rare lazy Sunday yesterday, looking around my bedroom at the many bookshelves, laden with hundreds of books that have comforted me like nothing else can during my worst times, turning my head to see the several stacks on my bedside table, the several stacks on my husband's bedside table, I suddenly became able to articulate quite clearly why Real. Books. Still. Matter.
Do you remember your childhood? Mine had many memorable aspects, but one that never changes with the perspective of age and time is the way I spent it looking at books. I would browse my parents bookshelves, sometimes for hours. It was a good time for book jackets in the 1970s--lurid, highly colored or abstractly bizarre--and it's no lie to say that I often would select a book based simply on its cover. Among the hundreds, probably thousands, of books my parents had--I never had to go to a library to research anything even in those pre-Internet days--there were titles I saw again and again, titles that stay with me to this day, playing like a visual record of book binding in my head.
Look Homeward Angel. Cien Años de Soledad. The World According to Garp. The Frogs. World Religions. The Agony and the Ecstasy. Les Miserables. Pride and Prejudice. Jude the Obscure. Ulysses. Robert and Elizabeth Browning. George Washington. A Latin primer. Shakespeare. Greek mythology. Books of history, biography, literature, science. And on and on. What a pleasure just to browse on a lonely, quiet day, to reach out and abstract an intriguing volume, to turn it over, feel its age, its woven binding, the crispiness of fragile yellowed paper, to see the type, turn a page, many pages, to get lost inside its world.
Had I not had those tangible, captivating book covers with their mysterious yet somehow meaningful titles there, literally at my fingertips, attracting my young mind, drawing me in and teasing my curiosity...well, I really do shudder when I think about the void that would have been without them. What if all my parents had lying there in that house, what if all I could see as I look around my bedroom today, what if all there were for me to reach for as my greatest comforters--what if it were all collated, coldly, electronically, invisibly, lying trapped within a grey, comfortless, handheld device called Kindle? Is this the chilly fate of future generations? Is this all they will have to ponder on a lonely, quiet Sunday afternoon?
It's a prospect that leaves me cold.
Under the knife
In the midst of our report card euphoria, there is one down note. Dubya, our kindergartner, has missed nine days of school since August. To put that in perspective, TH, now mid-way through second grade, has missed two days of school since he began kindergarten.
The culprit is a little single-celled organism that Dub just can't shake loose. He has had six strep infections since June. The standard is that if there are three in six months, surgery is warranted to remove the tonsils. Seems that some folks have tonsils that, Afghanistan-like, do not yield up the evil little buggers lurking in their unseen pockets. So every round of antibiotics has cleared the fever, temporarily; shrunken the little tonsils, temporarily; and made Dubya feel better, only to have it all return within a couple of weeks. In fact, a week after finishing his last round of antibiotics, he's started talking "headache," the usual harbinger of another oncoming infection.
Strep is supposed to be wildly contagious, but the rest of us--even though we all have tonsils--do not get it. Just Dubya.
The child's been problematic that way from the start. At birth, his lachrymal ducts were blocked with bone--yes, real, hard bone--instead of being open to drain his eyes. Result? An eye surgery that the pediatric ophthalmic surgeon--how's that for a subspecialty--said was the second worst she'd ever seen. I had that infant--age six months?--bleeding and in pain in the carseat, at the parking garage gate of the hospital, when the attendant informed me that, thanks to an eternally yammering discharge nurse, we were five minutes over the cutoff for cheap parking and "that would be $30 please."
Ever seen Fargo? You know the parking garage attendant who just can't seem to figure out that the person he's dealing with is completely insane and is going to shoot him? Well, this guy was slightly smarter than that and obligingly opened the gate after I asked him how much he thought it was worth since I was gonna drive through it to get my bleeding, screaming infant home and I wasn't paying someone $30 to do it.
We've also had two ear-tube surgeries, the first after several ear infections that led to major hearing loss for Dubya. In fact, we're getting his auditory processing assessed this summer because of suspicions about central auditory processing disorder. You can almost see his extended latency when you say something to him. There's the stare, uncomprehending. A beat. Another beat. And "ding!" The light goes on, and he responds. We'll see what the measurements say.
And then there's his tic. It's a little snort through his nose that he does, oh, every nanosecond or so. We had his adenoids scanned, but they're only slightly puffy. But they're coming out, too, along with the tonsils and the latter set of ear tubes, and we're hoping that this wholesale excision of all things bumpy and ENT related will (a) clear the strep permanently; (b) not lead to more ear infections now that the two-year-old tubes will be out; and (c) lead to a cessation of the second-by-second snort, which they ought to have co-opted for use at Gitmo years ago.
It all starts Thursday. Apparently, when tonsils are removed, the pain kicks in about week later when the scabs--ewwww--come off. Screaming pain. Pain that makes them vomit. The nurse held nothing back in describing it, even though Dubya was sitting there with me. And she mentioned, in passing, that with the adenoid removal, there might be a bit of a bloody nose that can easily be stanched with Afrin.
We bought loads of ice cream, popsicles, pudding, and other soft food items today. TH is desperately jealous and thinks that Dubya "is living the dream." He may feel a bit different about it when his little brother is crying with pain and hurling. We'll see.
The culprit is a little single-celled organism that Dub just can't shake loose. He has had six strep infections since June. The standard is that if there are three in six months, surgery is warranted to remove the tonsils. Seems that some folks have tonsils that, Afghanistan-like, do not yield up the evil little buggers lurking in their unseen pockets. So every round of antibiotics has cleared the fever, temporarily; shrunken the little tonsils, temporarily; and made Dubya feel better, only to have it all return within a couple of weeks. In fact, a week after finishing his last round of antibiotics, he's started talking "headache," the usual harbinger of another oncoming infection.
Strep is supposed to be wildly contagious, but the rest of us--even though we all have tonsils--do not get it. Just Dubya.
The child's been problematic that way from the start. At birth, his lachrymal ducts were blocked with bone--yes, real, hard bone--instead of being open to drain his eyes. Result? An eye surgery that the pediatric ophthalmic surgeon--how's that for a subspecialty--said was the second worst she'd ever seen. I had that infant--age six months?--bleeding and in pain in the carseat, at the parking garage gate of the hospital, when the attendant informed me that, thanks to an eternally yammering discharge nurse, we were five minutes over the cutoff for cheap parking and "that would be $30 please."
Ever seen Fargo? You know the parking garage attendant who just can't seem to figure out that the person he's dealing with is completely insane and is going to shoot him? Well, this guy was slightly smarter than that and obligingly opened the gate after I asked him how much he thought it was worth since I was gonna drive through it to get my bleeding, screaming infant home and I wasn't paying someone $30 to do it.
We've also had two ear-tube surgeries, the first after several ear infections that led to major hearing loss for Dubya. In fact, we're getting his auditory processing assessed this summer because of suspicions about central auditory processing disorder. You can almost see his extended latency when you say something to him. There's the stare, uncomprehending. A beat. Another beat. And "ding!" The light goes on, and he responds. We'll see what the measurements say.
And then there's his tic. It's a little snort through his nose that he does, oh, every nanosecond or so. We had his adenoids scanned, but they're only slightly puffy. But they're coming out, too, along with the tonsils and the latter set of ear tubes, and we're hoping that this wholesale excision of all things bumpy and ENT related will (a) clear the strep permanently; (b) not lead to more ear infections now that the two-year-old tubes will be out; and (c) lead to a cessation of the second-by-second snort, which they ought to have co-opted for use at Gitmo years ago.
It all starts Thursday. Apparently, when tonsils are removed, the pain kicks in about week later when the scabs--ewwww--come off. Screaming pain. Pain that makes them vomit. The nurse held nothing back in describing it, even though Dubya was sitting there with me. And she mentioned, in passing, that with the adenoid removal, there might be a bit of a bloody nose that can easily be stanched with Afrin.
We bought loads of ice cream, popsicles, pudding, and other soft food items today. TH is desperately jealous and thinks that Dubya "is living the dream." He may feel a bit different about it when his little brother is crying with pain and hurling. We'll see.
Friday, January 9, 2009
E for...everything
Yesterday, I picked up TH and Dubya a few minutes early. As I drove down the long, narrow drive that leads to their school, I had to steer around an abandoned BMW blocking the way. It was black, newish, sitting in the middle of the road, and completely empty. Extraordinary. I picked up the boys and headed back out, only to find the car still sitting there, empty. Other cars in the pickup line steered around it, eyeing it warily.What had happened? Had the driver just suddenly had enough and bailed into the nearby woodlands? Were they lying on the floor of the car, hiding from it all? Was it a micro-Rapture? I still don't know.
What I do know is that around here, we're enjoying a bit of rapture of our own because of the extraordinary performances both TH and Dubya produced on their report cards yesterday. Our grade code here is E (Excellent), S (Satisfactory), D (Developing, a nice way of saying, "Well, we're working on it), and N (ahem...needs improvement). For the first time since kindergarten, TH had several E grades on his report card. Dubya's was littered with them. They both have a few D or N grades--"Demonstrates self control" is apparently "developing" for our little Dubya (very, very slowly developing), and TH appears to need improvement in "Writing" and "Keeps materials organized" (duh). See image above for an example of both his writing and his organization. It almost defies description.
I'm proud to report that they both skipped up a notch to "E" for "Puts forth effort." It's cliche, I know, but we always tell them that the important thing is that they try, and we mean that. And this improvement shows that they are, in fact, trying. Yes, Virginia, there is an "E for Effort." As important is the fact that TH's teacher can read his very soul and knows exactly what to do for his potential, rather than for his limitations. Thanks to her, TH has an "E" in math. There's more to say about TH and math, but that's another post.
And now for the big news: TH, who last year was in the lowest reading group, who was receiving what is essentially remedial reading help at his school, who's spelling is so atrocious that even an Elizabethan couldn't figure it out--he's in the 98th percentile for reading! Placed at the 5th grade level! Wahoo! Better yet, the boy's obsessed with reading. He carries about six books around with him wherever he goes, reading at the table, in the car, during lunch, during recess, during break, at bedtime. He's recently figured out that he can actually also read while he's in the bathroom. Admit it. You know that's important to realize. And he has, at age seven, achieved the sole life goal I had for my children, that they be readers. Phew. I'm glad we got that taken care of.
But it gets even better. TH's teacher reports that since we presented Circle of Friends, TH is "working well with his peers in the classroom" and...drumroll please!..."is well liked." Well liked. The kids are lining up to play chess, checkers, and Connect 4 with him. She reports that the "social issues" have disappeared and attributes it to Circle of Friends. Throughout, she mentions continuing "environmental support" for his academics. You know those teachers you have, maybe two or three in your entire scholastic career, who make a huge difference, who open big, important doors and push you on through? TH has one of those teachers right now. Amazingly, it's his second one in three years.
This is a really good school.
Dubya's teacher describes him as a "thinker" who likes to ponder "deep questions." She also describes him as "quirky." Given that their surname simply ought to be "Quirky," that's not unexpected. She also describes him as a "phenomenal" artist and ends by designating him as our "very complicated little dynamo." And it's all true.
These developments of yesterday were so extraordinary that we, the DMFP family, did something a bit extraordinary of our own. We left the house, in the dark, after dinner, and heid ourselves to the nearest Ben and Jerry's where the younger members of our group partook of delightful, full-fat treats in celebration of a day full of "Es": for excellence, for effort, for exceptional, for extraordinary.
Wednesday, January 7, 2009
Homebodies
Lately, I've really been wanting to work from home--which I do most of the time anyway. I like home. I've got a comfortable chair, a great view out of my office window, and I can sit around in pajama pants with impunity. I don't think the university where I teach would like it if I showed up in pajama pants, although it probably would hardly faze the students.
So, it's no big surprise to me that my children want to be at home, too. Lots of kids probably get excited when their parents mention going "out to eat." Not ours. "Noooooo!" they'll wail. "Can't we just stay home and have a peanut butter sandwich?!" TH wants to be at home and has even sworn that when he's grown, he's still going to live with us. To add to the attraction, he's promised that "I'll never get married so you won't have to worry about that." Phew. That's a load off of my mind.
And Dubya always wants to go home. If he's staying with grandparents, he wants to go home. If we're out having a pretty good time, he hits some sort of saturation point and just wants to go home. Even Little, if we're out running errands, will fire up a little homeward bound mantra--"I...wha...go...home...now...I...wha...go...home...now."
Given this familial homebody tendency, the events of yesterday couldn't really be that shocking. It started when TH got into the car after school. "Mama," he announced, "today is my last day at this school. From now on, you can teach me at home." I, the "Mama" in the case, took issue. "But," he countered, "you said I could learn at home if I wanted to."
Ahhhhh. Yep. Last October, early in the month, when all that shit was going down with playground, bus, soccer, when we were deeply concerned that his anxiety and unhappiness were only increasing without amelioration, I had asked him, "Do you think you'd be better learning at home?" And he'd replied, "No! I don't want to be away from my friends at school." Of course, that was when he had no friends at school--Mario was busy doing sports during recess--and now, that these things have settled out nicely, now he decides he wants to home school. And to TH, last October is the same thing as yesterday morning, so in his mind, we just had that conversation minutes ago.
Then I got a phone call. It was Mario's mom. Mario had told her, with great anxiety, that TH had announced that this was his final day at that school, that from now on, he'd be learning at home. Mario insisted that his mother call me to check in this story. I explained to Mrs. Mario how it had all unfolded and assured her that TH would be at school today, as usual.
Then I opened his assignments folder, only to find a note from his special education teacher bearing the same story. "TH says he's not coming back to school, that you'd given him a choice of home schooling, and that today is his last day at school." Sigh. That little question was really coming back to bite me on the ass. I can't help it--I'm reflexively honest with my children and believe in including them in deliberations, and the question had just popped out.
Time for backpedaling. After some querying, I extracted from TH his reasons for not wanting to be at school. I'd already suspected that "this is our first day back after a two-plus week vacation" would be a major player. But he's also got high anxiety about math. He told me yesterday that "when the other kids are already on #6, I'm still on #1, and I just can't stay focused. You're the only person who can teach me that stuff the right way." Turns out, they're doing "ballpark estimation." Imagine how that could drive a concrete thinker completely insane. "Guesstimate"?! Why would you "guesstimate" 10 when the answer is obviously 11? It's hard for him.
And then there's the looming specter of third grade. Second grade, everyone says, is a practice year, a time for solidifying learning from first grade. Third grade, on the other hand, is a slog through tons of new information, new learning, new knowledge. It's hard, the rumors say. TH has decided that it's already begun, and he's terrified.
Like any young person, in his fear, he wants to run away. It's difficult, in a way, to send my anxiety-ridden, worried son back to school. But I know that the best lesson for him right now is the one that teaches facing up to fears and anxiety. From experience, I could tell him that it's the best way to make them shrink to nothing. I predict that by Friday, he'll be dramatically improved, and if I were dumb enough to ask him again if he'd like to learn at home, he'd respond, "No! I don't want to be away from my friends at school!" And this time, he really has some.
So, it's no big surprise to me that my children want to be at home, too. Lots of kids probably get excited when their parents mention going "out to eat." Not ours. "Noooooo!" they'll wail. "Can't we just stay home and have a peanut butter sandwich?!" TH wants to be at home and has even sworn that when he's grown, he's still going to live with us. To add to the attraction, he's promised that "I'll never get married so you won't have to worry about that." Phew. That's a load off of my mind.
And Dubya always wants to go home. If he's staying with grandparents, he wants to go home. If we're out having a pretty good time, he hits some sort of saturation point and just wants to go home. Even Little, if we're out running errands, will fire up a little homeward bound mantra--"I...wha...go...home...now...I...wha...go...home...now."
Given this familial homebody tendency, the events of yesterday couldn't really be that shocking. It started when TH got into the car after school. "Mama," he announced, "today is my last day at this school. From now on, you can teach me at home." I, the "Mama" in the case, took issue. "But," he countered, "you said I could learn at home if I wanted to."
Ahhhhh. Yep. Last October, early in the month, when all that shit was going down with playground, bus, soccer, when we were deeply concerned that his anxiety and unhappiness were only increasing without amelioration, I had asked him, "Do you think you'd be better learning at home?" And he'd replied, "No! I don't want to be away from my friends at school." Of course, that was when he had no friends at school--Mario was busy doing sports during recess--and now, that these things have settled out nicely, now he decides he wants to home school. And to TH, last October is the same thing as yesterday morning, so in his mind, we just had that conversation minutes ago.
Then I got a phone call. It was Mario's mom. Mario had told her, with great anxiety, that TH had announced that this was his final day at that school, that from now on, he'd be learning at home. Mario insisted that his mother call me to check in this story. I explained to Mrs. Mario how it had all unfolded and assured her that TH would be at school today, as usual.
Then I opened his assignments folder, only to find a note from his special education teacher bearing the same story. "TH says he's not coming back to school, that you'd given him a choice of home schooling, and that today is his last day at school." Sigh. That little question was really coming back to bite me on the ass. I can't help it--I'm reflexively honest with my children and believe in including them in deliberations, and the question had just popped out.
Time for backpedaling. After some querying, I extracted from TH his reasons for not wanting to be at school. I'd already suspected that "this is our first day back after a two-plus week vacation" would be a major player. But he's also got high anxiety about math. He told me yesterday that "when the other kids are already on #6, I'm still on #1, and I just can't stay focused. You're the only person who can teach me that stuff the right way." Turns out, they're doing "ballpark estimation." Imagine how that could drive a concrete thinker completely insane. "Guesstimate"?! Why would you "guesstimate" 10 when the answer is obviously 11? It's hard for him.
And then there's the looming specter of third grade. Second grade, everyone says, is a practice year, a time for solidifying learning from first grade. Third grade, on the other hand, is a slog through tons of new information, new learning, new knowledge. It's hard, the rumors say. TH has decided that it's already begun, and he's terrified.
Like any young person, in his fear, he wants to run away. It's difficult, in a way, to send my anxiety-ridden, worried son back to school. But I know that the best lesson for him right now is the one that teaches facing up to fears and anxiety. From experience, I could tell him that it's the best way to make them shrink to nothing. I predict that by Friday, he'll be dramatically improved, and if I were dumb enough to ask him again if he'd like to learn at home, he'd respond, "No! I don't want to be away from my friends at school!" And this time, he really has some.
Tuesday, January 6, 2009
Typical TH
Lunch mystery solved. Early last semester, TH was having some...issues...at lunch. These included what he perceived were hilarious behaviors such as painting his face with food, eating bizarre concoctions of what was on his plate (example: blue jello, macaroni, ketchup, broccoli--all together), and generally making kind of an ass of himself. The adult observers noted that the children were laughing, sure, but they were laughing at him, not with him. TH did not know that. He thought this behavior was bringing him friends. After all, laughter = friends, prima facie, right? And TH's depth of social understanding doesn't move past that "prima."
To address the situation, there were some adjustments. Each day, TH could choose a friend to sit with toward the end of the table where the aide sat with another boy in his class who has special needs. At first, all the other kids sort of sat nearby, too. But as time passed, they migrated away from the end of the table where the "authority" was, and edged to the opposite end of the table, where they were more free to be kids, away from the closely watchful eyes of adults.
TH, naturally, never bothered to ask if he could move down, too. He just continued to sit where he'd been told to sit weeks before. And as I mentioned, his best friend, Mario, sacrificed the communal fun of second-grade lunchtime to keep TH company.
It's so much like TH to just sit where he's told and never question it again. Once it's a "rule," it stays that way until some authority figure steps in and modifies it. He just passively rolls with whatever structure is in place, never thinking to request a change. So different from Dubya, who will fine tune a situation into oblivion if you let him. Now that the authorities are aware that the situation has shifted, literally, away from TH, some modifications are in the offing. He'll be able to sit with the other kids, but still at the end of the group.
And I've been lax. I need to get in touch with the counselor at the school about using lunchtime as a Circle of Friends opportunity for TH's Circle to tell him that people are laughing at him when he does those things, not with him. It's just one more thing that we hope TH learns when it comes to what friends can do for you. Yes, they can sit with you when you're alone at the end of the table. But friends also can help you learn.
To address the situation, there were some adjustments. Each day, TH could choose a friend to sit with toward the end of the table where the aide sat with another boy in his class who has special needs. At first, all the other kids sort of sat nearby, too. But as time passed, they migrated away from the end of the table where the "authority" was, and edged to the opposite end of the table, where they were more free to be kids, away from the closely watchful eyes of adults.
TH, naturally, never bothered to ask if he could move down, too. He just continued to sit where he'd been told to sit weeks before. And as I mentioned, his best friend, Mario, sacrificed the communal fun of second-grade lunchtime to keep TH company.
It's so much like TH to just sit where he's told and never question it again. Once it's a "rule," it stays that way until some authority figure steps in and modifies it. He just passively rolls with whatever structure is in place, never thinking to request a change. So different from Dubya, who will fine tune a situation into oblivion if you let him. Now that the authorities are aware that the situation has shifted, literally, away from TH, some modifications are in the offing. He'll be able to sit with the other kids, but still at the end of the group.
And I've been lax. I need to get in touch with the counselor at the school about using lunchtime as a Circle of Friends opportunity for TH's Circle to tell him that people are laughing at him when he does those things, not with him. It's just one more thing that we hope TH learns when it comes to what friends can do for you. Yes, they can sit with you when you're alone at the end of the table. But friends also can help you learn.
Monday, January 5, 2009
Walking
TH and I go on almost daily walks now, him on his bike and me on my aging feet. On our most recent walk, yesterday, he decided that he would slow down so that we could "talk." "That way," he explained, "we can be together more." He did so, rolling along next to me and controlling his speed admirably. "So," he said, "let's talk." "What do you want to talk about?" I asked him, thinking maybe he had something specific in mind. "I don't know," he replied. "We'll just chat."
So...we chatted. A few blocks later, in mid-chat, he commented, "This is fun! We should do this more often." We pretty much do it every day, but his saying that just about killed me, I thought it was so cute. TH, in his big red helmet, wobbly control over his bike, chatting away about the minutiae of something, and then deciding that it was so fun hanging out like this with me that we ought to do it again.
And I know that I should enjoy this time because it will go away someday, that enjoyment of being with your parent on a cold day, walking and rolling slowly along, chatting. TH and I have been a team now for more than seven years, walking and chatting, riding in the car and chatting, hanging out at home and chatting, lying in bed at his bedtime and chatting...and it seems like right now that there's nothing in that sweet little heart that I don't know intimately myself. And that someday, it won't be that way. This awareness hovered over that walk as I became almost teary over how open and trusting that little guy is right now with his mama and how even his getting slightly ahead of me was like watching a future unfold in which he would move away from me in more ways than that.
As we completed our walk, he offered another final little parental heart squeezer. "This was a great walk, Mama. The best walk ever!" Even though he was practically breaking my heart the whole time with his ingenuousness and open-hearted trust in me, yes, it was one of the best walks I've ever had.
So...we chatted. A few blocks later, in mid-chat, he commented, "This is fun! We should do this more often." We pretty much do it every day, but his saying that just about killed me, I thought it was so cute. TH, in his big red helmet, wobbly control over his bike, chatting away about the minutiae of something, and then deciding that it was so fun hanging out like this with me that we ought to do it again.
And I know that I should enjoy this time because it will go away someday, that enjoyment of being with your parent on a cold day, walking and rolling slowly along, chatting. TH and I have been a team now for more than seven years, walking and chatting, riding in the car and chatting, hanging out at home and chatting, lying in bed at his bedtime and chatting...and it seems like right now that there's nothing in that sweet little heart that I don't know intimately myself. And that someday, it won't be that way. This awareness hovered over that walk as I became almost teary over how open and trusting that little guy is right now with his mama and how even his getting slightly ahead of me was like watching a future unfold in which he would move away from me in more ways than that.
As we completed our walk, he offered another final little parental heart squeezer. "This was a great walk, Mama. The best walk ever!" Even though he was practically breaking my heart the whole time with his ingenuousness and open-hearted trust in me, yes, it was one of the best walks I've ever had.
At the end of the table
For the few weeks before school let out for the winter break, TH has been telling me that his lunchtime partner is his bestest friend, whom we used to call "Diamond" on this blog but whom I will now call "Mario" for reasons that will be clear to any of you who have an 7- or 8-year-old child. Mario has been TH's friend now since kindergarten began in August 2006. We love this child, not only because he genuinely likes our son and connects with him but also because he's a great kid.
So, it's not that we're not pleased to hear that TH eats with his best friend every day at lunch. But in the back of my mind, I'd been noting that it represented a change.
Every day, when my children get in the car as I pick them up from school, they know that they have to tell me three things. The first is what they had for lunch. Second is with whom they sat at lunch. And the last is what they did on the playground and with whom. As a bonus, I always ask, "Did you learn anything interesting today at school?" and usually, the answer to that is, "Um...not really." Also, Dubya will reflexively tell me if he got a "warning" or a "tally mark"--both "not good"--during school that day. He can't help it. He's just that honest.
I established this daily catechism for three reasons (there's a pattern of three here, isn't there?). The first is that I want my children to be in the habit of telling me things, good things and bad things and boring things and interesting things, so that they're comfortable doing so and they learn that they can trust me, even if it's a "bad" thing. It's why Dubya will tell me instantly about tally marks. I don't "go off" on him but discuss gravely with him what was happening when he got the warning or tally mark and then have him make suggestions about how to avoid that mistake the next time. And really, scout's honor, that child has been improving in that area since school started.
The second reason I elicit this litany is that I need to know how they both are spending their unstructured time. It's how we came to a dawning realization of TH's problems on the playground, and it's how I'm carefully monitoring and remain wary of Dubya's tendencies to lonerdome during his own playground time.
Which leads me to my third reason: I keep tabs on whom my children hang out with. If you want to know what your kids are doing, know your kids' friends.
And that takes me back to Mario. It's great that TH hangs with Mario, but mid-semester reports of lunch partners also regularly included a couple of other kids. Now, these two or three other boys have dropped off the roster, leaving only Mario as TH's daily lunchtime partner. Over break, Mario's mom asked me about that--turns out, she, too, obtains information about how her son spends his day and had noted the shift from several friends at lunch to TH only. And Mario told her that the "teacher" (the aide?) wanted TH to sit away from everyone else, at the end of the table with another child who is probably on the spectrum. Mario, as he told his mom, sat down there with TH, missing out on hanging with others during lunch, because "he didn't want TH to be alone down there." Bless the child.
I asked TH about this. It brought into focus my own building concern about the lunchtime feedback, how it had dwindled from five boys sitting together down to a consistent two. He reported in his convoluted way that the "teacher" wanted him, TH, to be friends with the other boy on the spectrum, and so had him sit there. That's great. But I need to find out how it came to pass that TH is isolated daily at lunchtime, away from the other boys in his class, and befriended during that period only because Mario is such a loyal and caring little boy.
So, it's not that we're not pleased to hear that TH eats with his best friend every day at lunch. But in the back of my mind, I'd been noting that it represented a change.
Every day, when my children get in the car as I pick them up from school, they know that they have to tell me three things. The first is what they had for lunch. Second is with whom they sat at lunch. And the last is what they did on the playground and with whom. As a bonus, I always ask, "Did you learn anything interesting today at school?" and usually, the answer to that is, "Um...not really." Also, Dubya will reflexively tell me if he got a "warning" or a "tally mark"--both "not good"--during school that day. He can't help it. He's just that honest.
I established this daily catechism for three reasons (there's a pattern of three here, isn't there?). The first is that I want my children to be in the habit of telling me things, good things and bad things and boring things and interesting things, so that they're comfortable doing so and they learn that they can trust me, even if it's a "bad" thing. It's why Dubya will tell me instantly about tally marks. I don't "go off" on him but discuss gravely with him what was happening when he got the warning or tally mark and then have him make suggestions about how to avoid that mistake the next time. And really, scout's honor, that child has been improving in that area since school started.
The second reason I elicit this litany is that I need to know how they both are spending their unstructured time. It's how we came to a dawning realization of TH's problems on the playground, and it's how I'm carefully monitoring and remain wary of Dubya's tendencies to lonerdome during his own playground time.
Which leads me to my third reason: I keep tabs on whom my children hang out with. If you want to know what your kids are doing, know your kids' friends.
And that takes me back to Mario. It's great that TH hangs with Mario, but mid-semester reports of lunch partners also regularly included a couple of other kids. Now, these two or three other boys have dropped off the roster, leaving only Mario as TH's daily lunchtime partner. Over break, Mario's mom asked me about that--turns out, she, too, obtains information about how her son spends his day and had noted the shift from several friends at lunch to TH only. And Mario told her that the "teacher" (the aide?) wanted TH to sit away from everyone else, at the end of the table with another child who is probably on the spectrum. Mario, as he told his mom, sat down there with TH, missing out on hanging with others during lunch, because "he didn't want TH to be alone down there." Bless the child.
I asked TH about this. It brought into focus my own building concern about the lunchtime feedback, how it had dwindled from five boys sitting together down to a consistent two. He reported in his convoluted way that the "teacher" wanted him, TH, to be friends with the other boy on the spectrum, and so had him sit there. That's great. But I need to find out how it came to pass that TH is isolated daily at lunchtime, away from the other boys in his class, and befriended during that period only because Mario is such a loyal and caring little boy.
Saturday, January 3, 2009
Change.org: Walk the walk
If you haven't already, get thee over to change.org and the new Autism blog. I have to give myself a pat on the back because when word got out that Change.org was looking for an autism blogger, all hell broke loose in the autism blogosphere. Much infighting, inarguing, and indisagreeing ensued. Some argued that Change.org should, in the spirit of change, hire an autistic blogger. Others argued that a parent or family member had just as much of a right to blog about autism as an autistic person.
I thought they were both right. I had applied to be the chosen blogger, but in the midst of the heated virtual discussions, I emailed Change.org and suggested that they split the position, hiring an autistic blogger and an autism family member so that both perspectives--which are both clearly important--had representation. Others may well have done the same. Change.org interviewed me for the position, and again, in that interview, I urged them to consider splitting the position. I felt very strongly that to be a power for change, Change.org would have to walk that walk and hire an autistic blogger. They would have to show people what many of us had long known: Yep. Autistic people can.
In fact, I had decided that I would not take the blogging position unless it were offered as a split. I did also feel that a parental blogger needed to be included, someone who could bring the perspective of the family member responsible for the first 18 years of life (and, in many cases, well beyond) of an autistic relative, usually their own child. Sadly for me--although I also have to admit to immense relief because it's going to be a tough, controversial job regardless--Change.org did not select me as their blogger. Happily for me and for the rest of us, they did select Kristina Chew, everyone's favorite (and now former) Autism Vox scribe, and Dora Raymaker, blogger on the autism spectrum and artist.
In every way, I believe that Change.org made exactly the right decision. So click on over and check it out. You'll find--as you might expect--that it's already knee deep in various controversies. I think that brutal directness--a hallmark of the world of autism--breeds these frank discussions. In my opinion, that's also a good thing. Walk on.
I thought they were both right. I had applied to be the chosen blogger, but in the midst of the heated virtual discussions, I emailed Change.org and suggested that they split the position, hiring an autistic blogger and an autism family member so that both perspectives--which are both clearly important--had representation. Others may well have done the same. Change.org interviewed me for the position, and again, in that interview, I urged them to consider splitting the position. I felt very strongly that to be a power for change, Change.org would have to walk that walk and hire an autistic blogger. They would have to show people what many of us had long known: Yep. Autistic people can.
In fact, I had decided that I would not take the blogging position unless it were offered as a split. I did also feel that a parental blogger needed to be included, someone who could bring the perspective of the family member responsible for the first 18 years of life (and, in many cases, well beyond) of an autistic relative, usually their own child. Sadly for me--although I also have to admit to immense relief because it's going to be a tough, controversial job regardless--Change.org did not select me as their blogger. Happily for me and for the rest of us, they did select Kristina Chew, everyone's favorite (and now former) Autism Vox scribe, and Dora Raymaker, blogger on the autism spectrum and artist.
In every way, I believe that Change.org made exactly the right decision. So click on over and check it out. You'll find--as you might expect--that it's already knee deep in various controversies. I think that brutal directness--a hallmark of the world of autism--breeds these frank discussions. In my opinion, that's also a good thing. Walk on.
Thursday, January 1, 2009
Oh, all right. Happy. New. Year.
I was sitting around today on the couch doing needlepoint and wondering if I lived in "real" America and if not, exactly where that might be if not where I am and also wondering when the day would come that even if we don't have peace on Earth we might at least learn from what have literally been millennia of lessons teaching us that forcing religion on people and mixing law and religion is simply not ever gonna work and leads to endless tragedy and really hoping, as I needlepointed away, that we would someday truly understand that anything we choose to apply to all people should be based in humanism rather than religion and then I got back to wondering about that whole "real" America thing. What a year it's been. Economy in the toilet, no roadmap detailing which of us are living in the "real" America, healthcare and health insurance barely on life support for millions of people in what was once a wealthy nation that now has a deficit so large that we can't even fit all of the numbers on the deficit clock, Santas who kill families, people in the Middle East who insist on killing each other, idiots in Texas who insist on stuffing their religion into our taxpayer-funded science textbooks, and there is really just no way in hell we're ever going to have peace on Earth or good will to men or women or children who need healthcare coverage and who consistently get left behind, plastic, ineffectual federal mandates notwithstanding.
Yep. I was feeling misanthropic. Hatin' the world. Wanting to build a steel barrier around my happy little home of cheerful nutty children and one quiet, reading husband. Lock 'em all out and only let in people delivering the carefully toxin-tested food. Happy New Year, indeed.
I have no idea what put me in that mood. Humanity? Neurotransmitters? Hormones? Dr Pepper?
A precious irony is that as I darkened my mind with these delightful offerings of the old year...and let's face it, they're reality, whether they're festive or not...I was, as I've mentioned, needlepointing. "What ho!" you may think. "Why doth this biologist and sarcastic, misanthropic mother of three needlepoint? Hath she nothing better to do than sit, wielding her needle in such a distaff-oriented pasttime? Isn't there something...biological...she could doeth?"
Yea, verily, likely there ith. But you have to enjoy the irony that as I indulged in these bitter recollections of a year passed and past, I threaded and wove a picture for a Christmas stocking, a jolly Santa on his sleigh, bringing his gifts to the sleeping children in the precious little homes warmly lit against a snowy, evergreen-dotted backdrop. I almost feel as though every bitter little stitch I added today wove into that stocking a little bit of the reality that persists even as we try, sometimes in vain, to enjoy the fruits and pleasures of the season. The Santa is precious, the houses are precious, the snow something we never experience around here, especially at Christmas. It's tough, sometimes, for me to decide whether or not living in a little fantasy land and wishing fervently for peace on Earth and at least a bare majority for the sensible people of the world is preferable to reaching out and embracing reality with open, exhausted arms.
Here's hoping that 2009 brings a little more agreement between our hopes and our reality. Or at least a bare majority for the sensible people of the world. And maybe tomorrow, I'll lay off the Dr Pepper.
Yep. I was feeling misanthropic. Hatin' the world. Wanting to build a steel barrier around my happy little home of cheerful nutty children and one quiet, reading husband. Lock 'em all out and only let in people delivering the carefully toxin-tested food. Happy New Year, indeed.
I have no idea what put me in that mood. Humanity? Neurotransmitters? Hormones? Dr Pepper?
A precious irony is that as I darkened my mind with these delightful offerings of the old year...and let's face it, they're reality, whether they're festive or not...I was, as I've mentioned, needlepointing. "What ho!" you may think. "Why doth this biologist and sarcastic, misanthropic mother of three needlepoint? Hath she nothing better to do than sit, wielding her needle in such a distaff-oriented pasttime? Isn't there something...biological...she could doeth?"
Yea, verily, likely there ith. But you have to enjoy the irony that as I indulged in these bitter recollections of a year passed and past, I threaded and wove a picture for a Christmas stocking, a jolly Santa on his sleigh, bringing his gifts to the sleeping children in the precious little homes warmly lit against a snowy, evergreen-dotted backdrop. I almost feel as though every bitter little stitch I added today wove into that stocking a little bit of the reality that persists even as we try, sometimes in vain, to enjoy the fruits and pleasures of the season. The Santa is precious, the houses are precious, the snow something we never experience around here, especially at Christmas. It's tough, sometimes, for me to decide whether or not living in a little fantasy land and wishing fervently for peace on Earth and at least a bare majority for the sensible people of the world is preferable to reaching out and embracing reality with open, exhausted arms.
Here's hoping that 2009 brings a little more agreement between our hopes and our reality. Or at least a bare majority for the sensible people of the world. And maybe tomorrow, I'll lay off the Dr Pepper.
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