The Day We've Been Fearing Has Arrived
Two fearsome days, actually. Both about Iz.
One: I dropped off her Kindergarten reg. forms this A.M. If there's to be any up/down shuffling, we can address it later. For the six to eight weeks until we hear whether or not she got into Esperanza (the Spanish immersion public school), my job is done.
Two: Iz asked Seymour why we always stop what we're doing with her to go pay attention to Leelo. That cracking sound you hear is my husband's heart breaking.
Off to Fricking Phoenix for my brother's girlfriend's baby shower. No, I haven't bought a gift or packed yet. Back Monday.
2.27.2004
2.26.2004
Rrrraspberries!
(If there exists a more vile cinematic vision than Carol Channing in Thoroughly Modern Millie, I don't want to know about it.)
There is a reason we store Leelo's carefully rationed dried raspberries on top of the refrigerator. I left them on the counter for a few minutes yesterday, looked the other way, and Wham! He had the entire bag on the floor, somehow undid the wire twisty-tie (uh, doesn't he have fine-motor issues?) and was gorging on raspberries like Augustus Gloop slurping chocolate from the River Wonka. Dammit.
We're trying to keep his raspberry intake down because they seem to be a nuttiness trigger. Wow, maybe we can try the Feingold Diet next! Except it would be a major problem as our boy has for some reason started rejecting all foods except rice bread toast with almond or cashew butter, Whole Foods veggie chips, rice milk withOUT supplements, and raspberries. He's not pleased about his limited diet, either, and sometimes starts sobbing when he sees us eating something we're obviously enjoying. We are going to renew efforts to broaden his diet after we return from our weekend trip to Phoenix.
He has been having more of this heart-wrenching sobbing lately. I am done with wondering which supplement or diet change is causing what, but do need to note that he's not had K/Mag Aspartate for two weeks (ran out, only available through Dr. P and that's a fricking haul) nor DGST-P for one (also ran out, also solely supplied by Dr. P). The hopeful part of me thinks that it's indicative of a more developed emotional sense: he does it when he's denied, and he does it when Iz gets upset. A friend with an autistic nephew suggested that it might be delayed terrible twos, as his denial sadness is often accompanied by a big wailing "Nooooooooo!"
Nevertheless, our boy had lots of great language this past weekend. Really great. He's been greeting everyone by name, mostly without prompts, even those he sees only once or twice a month. He recognized the Dr. Seuss logo on his new Green Eggs and Ham book, in that when I asked him if he wanted to read GE & H, he said "Dr. Seuss's Green Eggs & Ham." I didn't tell him that. He's been asking for lots of things with big long sentences, such as "I want Mr. Salt and Mrs. Pepper!" Therapist T, who started yesterday, was impressed by his use of complete phrases. His crazies have been minimal, though he was a bit remote today. Yesterday when Iz came home, he gave her five minutes of attack hugs. He also attacked poor Scabby the Cat, pulling her off our ottoman because he wanted to be there. It's all interaction, right?
But there is still lots of suckiness. His chattering and singing is ongoing. It is loopy and town-idiot-like. Not mellow, and not the kind of behavior that will allow him to "pass" in public. All this language that we crow about is stilted and formal. You can ask him "Do you want to read The Ear Book?" and he will say yes, but if you hold up two books and ask him which one he wants to read, he will stare at you blankly. Bed time is back to sucking, big time. No matter how tired he is, one of us must man his bedroom door for at least an hour each night (it's not so bad as it's adjacent to this terminal, but still) as he becomes Crazy Room Trashing Boy the moment after you turn off the lights and tell him good night.
I worry that he's developing as many autistic symptoms as he's overcoming. Worry worry worry.
Some related good news on that front is that the Stanfford PDD/Autism Clinic called yesterday to say that they had a cancellation for next week, and did we want the appointment? Hell yes! It is a long evaluation--several hours over two days--and will at least quantify our worries into convenient categories. I hope and pray that Leelo will be having a reasonably good day--he was sick and completely non-compliant during his exit interview with the Regional Center in November.
Additional good news on the ABA program front. Supervisors M and Andil went to the local ABA conference last weekend. One of the presentations they attended was led by local autism biggywig Brina Seagull, who described an idealized integrated ABA therapy program incorporating approaches beyond pure discrete trials. Our two supervisors sat in the audience with deservedly smug grins, because Ms. Seagull was describing our Leelo's very program.
Which had a big change this week. Therapist F is already in Australia, and, as noted, Therapist T started yesterday. She is awesome. Therapist L is even more awesome in training her. These people are so amazing; it takes my last ounce of effort not to shower them with gold or adorn them with scented jewels after every session. Please stay, please keep making my boy better, and don't ever leave!
(If there exists a more vile cinematic vision than Carol Channing in Thoroughly Modern Millie, I don't want to know about it.)
There is a reason we store Leelo's carefully rationed dried raspberries on top of the refrigerator. I left them on the counter for a few minutes yesterday, looked the other way, and Wham! He had the entire bag on the floor, somehow undid the wire twisty-tie (uh, doesn't he have fine-motor issues?) and was gorging on raspberries like Augustus Gloop slurping chocolate from the River Wonka. Dammit.
We're trying to keep his raspberry intake down because they seem to be a nuttiness trigger. Wow, maybe we can try the Feingold Diet next! Except it would be a major problem as our boy has for some reason started rejecting all foods except rice bread toast with almond or cashew butter, Whole Foods veggie chips, rice milk withOUT supplements, and raspberries. He's not pleased about his limited diet, either, and sometimes starts sobbing when he sees us eating something we're obviously enjoying. We are going to renew efforts to broaden his diet after we return from our weekend trip to Phoenix.
He has been having more of this heart-wrenching sobbing lately. I am done with wondering which supplement or diet change is causing what, but do need to note that he's not had K/Mag Aspartate for two weeks (ran out, only available through Dr. P and that's a fricking haul) nor DGST-P for one (also ran out, also solely supplied by Dr. P). The hopeful part of me thinks that it's indicative of a more developed emotional sense: he does it when he's denied, and he does it when Iz gets upset. A friend with an autistic nephew suggested that it might be delayed terrible twos, as his denial sadness is often accompanied by a big wailing "Nooooooooo!"
Nevertheless, our boy had lots of great language this past weekend. Really great. He's been greeting everyone by name, mostly without prompts, even those he sees only once or twice a month. He recognized the Dr. Seuss logo on his new Green Eggs and Ham book, in that when I asked him if he wanted to read GE & H, he said "Dr. Seuss's Green Eggs & Ham." I didn't tell him that. He's been asking for lots of things with big long sentences, such as "I want Mr. Salt and Mrs. Pepper!" Therapist T, who started yesterday, was impressed by his use of complete phrases. His crazies have been minimal, though he was a bit remote today. Yesterday when Iz came home, he gave her five minutes of attack hugs. He also attacked poor Scabby the Cat, pulling her off our ottoman because he wanted to be there. It's all interaction, right?
But there is still lots of suckiness. His chattering and singing is ongoing. It is loopy and town-idiot-like. Not mellow, and not the kind of behavior that will allow him to "pass" in public. All this language that we crow about is stilted and formal. You can ask him "Do you want to read The Ear Book?" and he will say yes, but if you hold up two books and ask him which one he wants to read, he will stare at you blankly. Bed time is back to sucking, big time. No matter how tired he is, one of us must man his bedroom door for at least an hour each night (it's not so bad as it's adjacent to this terminal, but still) as he becomes Crazy Room Trashing Boy the moment after you turn off the lights and tell him good night.
I worry that he's developing as many autistic symptoms as he's overcoming. Worry worry worry.
Some related good news on that front is that the Stanfford PDD/Autism Clinic called yesterday to say that they had a cancellation for next week, and did we want the appointment? Hell yes! It is a long evaluation--several hours over two days--and will at least quantify our worries into convenient categories. I hope and pray that Leelo will be having a reasonably good day--he was sick and completely non-compliant during his exit interview with the Regional Center in November.
Additional good news on the ABA program front. Supervisors M and Andil went to the local ABA conference last weekend. One of the presentations they attended was led by local autism biggywig Brina Seagull, who described an idealized integrated ABA therapy program incorporating approaches beyond pure discrete trials. Our two supervisors sat in the audience with deservedly smug grins, because Ms. Seagull was describing our Leelo's very program.
Which had a big change this week. Therapist F is already in Australia, and, as noted, Therapist T started yesterday. She is awesome. Therapist L is even more awesome in training her. These people are so amazing; it takes my last ounce of effort not to shower them with gold or adorn them with scented jewels after every session. Please stay, please keep making my boy better, and don't ever leave!
A Thought or Two
If someone says your use of your own damn mug for to-go coffee is a real "Earth First" approach, and you joke about having given up tree spiking now that you've got kids, perhaps it would have been better to ascertain first that the said someone didn't come from a displaced Oregon logging family.
If a friend commends the politeness of your children, and you joke that "Yes, the beatings are finally working," perhaps it would have been better to ascertain first whether or not your friend had an abusive childhood.
Just a couple of thoughts.
(On review, a couple of really wordy thoughts. Elmore Leonard, I apologize.)
If someone says your use of your own damn mug for to-go coffee is a real "Earth First" approach, and you joke about having given up tree spiking now that you've got kids, perhaps it would have been better to ascertain first that the said someone didn't come from a displaced Oregon logging family.
If a friend commends the politeness of your children, and you joke that "Yes, the beatings are finally working," perhaps it would have been better to ascertain first whether or not your friend had an abusive childhood.
Just a couple of thoughts.
(On review, a couple of really wordy thoughts. Elmore Leonard, I apologize.)
2.25.2004
"I'm Sure Gays Are Nice People, But..."
I think a lot of people support Bushwad's proposed constitutional amendment in theory, largely because they have never known any families parented by same-sex couples and therefore think they're all freaks.
If you know some of these otherwise well-meaning dilweeds, have them read the letter below. It was passed on by the mom of one of Iz's Sunday School friends. It might as well have been written by that mom.
An Open Letter To The President From UU Rev. Meg Riley
February 24, 2004
Dear Mr. President,
This morning you felt compelled to introduce an amendment to the Constitution of the United States defining marriage as existing only between one man and one woman.
You say that this will create "clarity." I would like you to share this clarity with my first grade daughter on her school playground, when the children, imitating their role models as they always do, will take up the issue. Because I dread those conversations with every fiber of my being.
Challenged by another child, my daughter will declare forthrightly that of course her two moms are married. After all, we have wedding photos in our home, as any couple does. They show her two moms, fifteen years ago, in front of our Unitarian Universalist Congregation. Smiling, with many of our friends and family members around us...
Read More>>
I think a lot of people support Bushwad's proposed constitutional amendment in theory, largely because they have never known any families parented by same-sex couples and therefore think they're all freaks.
If you know some of these otherwise well-meaning dilweeds, have them read the letter below. It was passed on by the mom of one of Iz's Sunday School friends. It might as well have been written by that mom.
An Open Letter To The President From UU Rev. Meg Riley
February 24, 2004
Dear Mr. President,
This morning you felt compelled to introduce an amendment to the Constitution of the United States defining marriage as existing only between one man and one woman.
You say that this will create "clarity." I would like you to share this clarity with my first grade daughter on her school playground, when the children, imitating their role models as they always do, will take up the issue. Because I dread those conversations with every fiber of my being.
Challenged by another child, my daughter will declare forthrightly that of course her two moms are married. After all, we have wedding photos in our home, as any couple does. They show her two moms, fifteen years ago, in front of our Unitarian Universalist Congregation. Smiling, with many of our friends and family members around us...
Read More>>
2.24.2004
Anemic Humor
***boys, leave the room now***
I was supposed to go in for an ultrasound tomorrow, to figure out why my monthly express has switched tracks and become the crazy train. So of course, whoo whoo! Guess who came into the station a full five days early? Grrrrr.
I am definitely ready to find out what the fark is going on with my body. Seymour is probably readier than I to find out if there's a way to deactivate my unpredictable insta-psycho-bitch button.
Because I am a hypochondriac worrywort, I think it's ovarian cancer, PCOS, or yet another undiagnosed and statistically almost impossible tubal pregnancy. It will probably end up being the same quotidian, painful, draining thing that plagued my mom and her mom too. I will not follow their path, though--they put up with it for years and were chronically anemic and ended up having their wombs torn from their bodies (albeit surgically).
Two weeks and we'll see. I have definitely been reading too many Thomas stories.
***boys, leave the room now***
I was supposed to go in for an ultrasound tomorrow, to figure out why my monthly express has switched tracks and become the crazy train. So of course, whoo whoo! Guess who came into the station a full five days early? Grrrrr.
I am definitely ready to find out what the fark is going on with my body. Seymour is probably readier than I to find out if there's a way to deactivate my unpredictable insta-psycho-bitch button.
Because I am a hypochondriac worrywort, I think it's ovarian cancer, PCOS, or yet another undiagnosed and statistically almost impossible tubal pregnancy. It will probably end up being the same quotidian, painful, draining thing that plagued my mom and her mom too. I will not follow their path, though--they put up with it for years and were chronically anemic and ended up having their wombs torn from their bodies (albeit surgically).
Two weeks and we'll see. I have definitely been reading too many Thomas stories.
My Genes Have Been Spliced
But I don't think I'm going to take over the world today. Foiled yet again, this time by a stupid fucking broken labelmaker ribbon cassette. How could such a inoffensive, non-critical item derail my march toward global hegemony? Well, here's the thing. If I can't label my files legibly, then they'll be unusable. I will not be able to organize the five-year backlog of critical documents hiding in various piles throughout the office. Said office will remain a morass. I will remain depressed, demoralized, disorganized, and dis-, uh, useful. My plans will remain sketchy and unfocused, and Bushwad will remain on the throne. All because of a broken ribbon.
Anyhow, here's what's been going on lately.
First of all, thanks to Wampum for the daily critical reminders. The last two oh yeah, duh! zingers are 1) Thimerasol's continuing inclusion in Rhogam (I'm Rh negative), and 2) that there's never been any Thimerasol in the MMR vaccine since it contains live bugs. I can't always keep the details sorted, and am very grateful to those who can.
Last week's therapist hiring process was a cuthroat circus. We lost two candidates to other families before we'd even finished our week of interviews. One of them cancelled right before the interview, via email--rude! We were upstairs wondering why she was late. But we got a lot of intriguing information from her very kind and chatty reference so her candidacy was not a total wash.
This woman, Betty, has her five-year-old autistic son following Dr. Michael Goldberg's NIDS protocol. Dr. Goldberg believes that the autism epidemic is largely caused by virally-induced autoimmune disorders. From what I gathered, he has a three-pronged attack of anti-fungals, anti-virals, and low-dose anti-depressants. He is DAN- and chelation-skeptical. It merits further research. I'd heard little about it before.
Of course, Betty's son has been on a strict ABA program since just before he turned three.
Betty said they had tried the DAN route and weren't convinced, plus their DAN doctor was a disorganized fuckwad who charged several hundred dollars per hour for consultations. Betty remains uneasy about the anti-depressants, but her son's brain scan revealed multiple areas with no blood flow, and Dr. Goldberg told her the anti-depressants would help, so they put the boy on them. She said subsequent scans showed the areas disappearing due to increased blood flow. She also reports that previous to anti-depressants, her boy had no sense of self-preservation (typical autism trait) and now has a very strong one. I don't think this can be entirely explained by ABA.
She recommended the book Children With Starving Brains (which we have, in our stack of to-read materials), as Dr. Goldberg is cited in there. Rah, more reading!
Speaking of which, I got a double-kick out of a "reading party" that Iz and I had during Leelo's occupational therapy session this afternoon. Iz read Little Red Riding Hood out loud, at a volume that was not disturbing but which certainly caught the ear of an also-waiting proven snob mom with a same-aged non-reading child. (Take that and shove it up the asses of the parents at your sooo-wonderful school, bitch!) I was slyly reading some really excellent fantasy smut--made even more titillating given the shiny happy dancing bunnies and ducks gaping at me from all four walls.
My folks were kind enough to sit on the kids while Seymour and I stole out to a late movie Saturday night. The only thing not totally offensive was Cold Mountain, which was loooooong but okay. I liked the idea of a stupid useless decorative chick becoming a wily useful skilled woman, but two things made my teeth grind all night: 1) Horrific mass and individual battle scenes coupled with the complete devaluation of humanity (I cherish and am grateful for my suburban bubble and never pretend I'm not), and 2) for fuck's sake, it IS possible to tell a tale about a long harrowing journey without bellowing out references to the Odyssey. Jeez. People, make up your own damn stories!
This is getting long and rambly. I'll start a new entry.
But I don't think I'm going to take over the world today. Foiled yet again, this time by a stupid fucking broken labelmaker ribbon cassette. How could such a inoffensive, non-critical item derail my march toward global hegemony? Well, here's the thing. If I can't label my files legibly, then they'll be unusable. I will not be able to organize the five-year backlog of critical documents hiding in various piles throughout the office. Said office will remain a morass. I will remain depressed, demoralized, disorganized, and dis-, uh, useful. My plans will remain sketchy and unfocused, and Bushwad will remain on the throne. All because of a broken ribbon.
Anyhow, here's what's been going on lately.
First of all, thanks to Wampum for the daily critical reminders. The last two oh yeah, duh! zingers are 1) Thimerasol's continuing inclusion in Rhogam (I'm Rh negative), and 2) that there's never been any Thimerasol in the MMR vaccine since it contains live bugs. I can't always keep the details sorted, and am very grateful to those who can.
Last week's therapist hiring process was a cuthroat circus. We lost two candidates to other families before we'd even finished our week of interviews. One of them cancelled right before the interview, via email--rude! We were upstairs wondering why she was late. But we got a lot of intriguing information from her very kind and chatty reference so her candidacy was not a total wash.
This woman, Betty, has her five-year-old autistic son following Dr. Michael Goldberg's NIDS protocol. Dr. Goldberg believes that the autism epidemic is largely caused by virally-induced autoimmune disorders. From what I gathered, he has a three-pronged attack of anti-fungals, anti-virals, and low-dose anti-depressants. He is DAN- and chelation-skeptical. It merits further research. I'd heard little about it before.
Of course, Betty's son has been on a strict ABA program since just before he turned three.
Betty said they had tried the DAN route and weren't convinced, plus their DAN doctor was a disorganized fuckwad who charged several hundred dollars per hour for consultations. Betty remains uneasy about the anti-depressants, but her son's brain scan revealed multiple areas with no blood flow, and Dr. Goldberg told her the anti-depressants would help, so they put the boy on them. She said subsequent scans showed the areas disappearing due to increased blood flow. She also reports that previous to anti-depressants, her boy had no sense of self-preservation (typical autism trait) and now has a very strong one. I don't think this can be entirely explained by ABA.
She recommended the book Children With Starving Brains (which we have, in our stack of to-read materials), as Dr. Goldberg is cited in there. Rah, more reading!
Speaking of which, I got a double-kick out of a "reading party" that Iz and I had during Leelo's occupational therapy session this afternoon. Iz read Little Red Riding Hood out loud, at a volume that was not disturbing but which certainly caught the ear of an also-waiting proven snob mom with a same-aged non-reading child. (Take that and shove it up the asses of the parents at your sooo-wonderful school, bitch!) I was slyly reading some really excellent fantasy smut--made even more titillating given the shiny happy dancing bunnies and ducks gaping at me from all four walls.
My folks were kind enough to sit on the kids while Seymour and I stole out to a late movie Saturday night. The only thing not totally offensive was Cold Mountain, which was loooooong but okay. I liked the idea of a stupid useless decorative chick becoming a wily useful skilled woman, but two things made my teeth grind all night: 1) Horrific mass and individual battle scenes coupled with the complete devaluation of humanity (I cherish and am grateful for my suburban bubble and never pretend I'm not), and 2) for fuck's sake, it IS possible to tell a tale about a long harrowing journey without bellowing out references to the Odyssey. Jeez. People, make up your own damn stories!
This is getting long and rambly. I'll start a new entry.
Le Urp?
Twelve years ago, Seymour and I did the broken-down-goat-bus tour of Mali's Dogon region. We became friends with our guide, Tombou, despite the twin barriers of my low-rent pidgin French and his sketchy tourist-gleaned English. Ever since, Tombou and I have corresponded in French as best we can, more frequently now that he has email. Usually I have a vague idea of what he's saying, e.g., "I hope you are well and can you send me some size 40 Teva sandals," but today's is a stumper. I can't tell if he's saying that friendship is more important than money, or that he's mad at me and wants money now, dammit (which would be odd). Anyone have a clue?
hi squid je te fait ce message pour te dire jesuis
fache avec toi parceque je ne pas tourve mon carte de
bonne annee parce que je demende beucoup d'argent avec
vous pour nous l'argent ce pas inportant mais
l'amitiesmerci je salutles enfants es ton marie Seymour
Tombou
Twelve years ago, Seymour and I did the broken-down-goat-bus tour of Mali's Dogon region. We became friends with our guide, Tombou, despite the twin barriers of my low-rent pidgin French and his sketchy tourist-gleaned English. Ever since, Tombou and I have corresponded in French as best we can, more frequently now that he has email. Usually I have a vague idea of what he's saying, e.g., "I hope you are well and can you send me some size 40 Teva sandals," but today's is a stumper. I can't tell if he's saying that friendship is more important than money, or that he's mad at me and wants money now, dammit (which would be odd). Anyone have a clue?
hi squid je te fait ce message pour te dire jesuis
fache avec toi parceque je ne pas tourve mon carte de
bonne annee parce que je demende beucoup d'argent avec
vous pour nous l'argent ce pas inportant mais
l'amitiesmerci je salutles enfants es ton marie Seymour
Tombou
2.22.2004
Not Big on the Blog
Hey Folks, not much in a blogging mood today, so I'll leave you with today's biggest fucking found laugh ever. Possibly not work safe, if your workplace really sucks. Thanks, Eros Blog!
Hey Folks, not much in a blogging mood today, so I'll leave you with today's biggest fucking found laugh ever. Possibly not work safe, if your workplace really sucks. Thanks, Eros Blog!
2.21.2004
Iz Returns Today!
My parents are driving our girl back to us from San Diego as I type. They'll be here in two hours.
I do miss her, but Seymour and I have had a really fabulous, quiet, mellow week with the boy. It would have been more pleasant without therapist interviews all night every night, but hey.
We will now resume living at top volume.
My parents are driving our girl back to us from San Diego as I type. They'll be here in two hours.
I do miss her, but Seymour and I have had a really fabulous, quiet, mellow week with the boy. It would have been more pleasant without therapist interviews all night every night, but hey.
We will now resume living at top volume.
2.20.2004
Rah! Rah! Rah!
Rah for us! The therapist candidate who works for the Stanfford PDD/Autism clinic is going to be our substitute therapist!
Rah for Leelo! He had some amazing language amidst the crazies today. When Seymour got home from work, the boy couldn't stop exclaming "Daddy! Daddy! Daddy!" and then said "I want Daddy" and demanded to be picked up and hugged, then demanded "kiss." Woo! Also later he worked really hard at some descriptive language:
"I want water"
Squid: "Leelo, you have water"
"I want BLUE water"
Squid: urp? "You have water."
"I want...rice milk!" (Rice Dream comes in a blue box.) Go Leelo!
Rah for Seymour! I have had two sidecars and a Bailey's latte. Someone's getting lucky tonight.
Rah for us! The therapist candidate who works for the Stanfford PDD/Autism clinic is going to be our substitute therapist!
Rah for Leelo! He had some amazing language amidst the crazies today. When Seymour got home from work, the boy couldn't stop exclaming "Daddy! Daddy! Daddy!" and then said "I want Daddy" and demanded to be picked up and hugged, then demanded "kiss." Woo! Also later he worked really hard at some descriptive language:
"I want water"
Squid: "Leelo, you have water"
"I want BLUE water"
Squid: urp? "You have water."
"I want...rice milk!" (Rice Dream comes in a blue box.) Go Leelo!
Rah for Seymour! I have had two sidecars and a Bailey's latte. Someone's getting lucky tonight.
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