Disneyland Resort
Took Jake to Disneyland again this year right before Christmas.. We are really mean parents because we took him on Tower of Terror A friend asked us if that might be considered a form of child abuse.. being that Jake can't actually speak to tell us that he REALLY doesn't want to plunge 13 stories.
You only need to be 40" (102cm) to ride by the way...
28 December, 2004
02 November, 2004
14 October, 2004
Bad Mothers Club
Bad Mothers Club
I haven't read much, but thus far the Bad Mothers Club appears to be just my style :)
I haven't read much, but thus far the Bad Mothers Club appears to be just my style :)
13 October, 2004
06 October, 2004
Education for Peace in Iraq Center > Blind into Baghdad by James Fallows
Education for Peace in Iraq Center > Blind into Baghdad by James Fallows ( DNN 2.0.3 )
I think this is an interesting article about Iraq. I found it by way of this other interesting blog
The above Blog is written by a former infantry officer and law school graduate living in Pasadena.
I think this is an interesting article about Iraq. I found it by way of this other interesting blog
The above Blog is written by a former infantry officer and law school graduate living in Pasadena.
29 September, 2004
Blog of a Bookslut
Blog of a Bookslut
I think I am becoming a cyberdork. I am actually looking at a)other people's blogs and b) blogs of those who do book reviews.
When did this happen? When did I become so strangely techno addicted that I would even venture to create a Blog, let alone continue writing here?
Is this like that whole "grown up " thing, where all of a sudden you realize that you are married, with a kid, and a mortgage, and two cars, and a vegetable garden, and life insurance on your head worth a million dollars, and you are making a dentist appointment for someone else under the age of 18.. who is your permanent responsibility. I own a piano. and a buffet table, and I get excited at the prospect of a new refrigerator.
These things creep up slowly upon us. Good thing I like most of the trappings.
I think I am becoming a cyberdork. I am actually looking at a)other people's blogs and b) blogs of those who do book reviews.
When did this happen? When did I become so strangely techno addicted that I would even venture to create a Blog, let alone continue writing here?
Is this like that whole "grown up " thing, where all of a sudden you realize that you are married, with a kid, and a mortgage, and two cars, and a vegetable garden, and life insurance on your head worth a million dollars, and you are making a dentist appointment for someone else under the age of 18.. who is your permanent responsibility. I own a piano. and a buffet table, and I get excited at the prospect of a new refrigerator.
These things creep up slowly upon us. Good thing I like most of the trappings.
28 September, 2004
12 frogs: The Comcast Digital Cable That Wasn't
12 frogs: The Comcast Digital Cable That Wasn't
Just got off the phone with Comcast cable AGAIN. I am so tired of paying nearly $90 a month and receiving ...uhm maybe all the channels for part of the day, or some the the channels all of the day. Apparently they must know that I am too lazy to switch to DISH Network.
Just got off the phone with Comcast cable AGAIN. I am so tired of paying nearly $90 a month and receiving ...uhm maybe all the channels for part of the day, or some the the channels all of the day. Apparently they must know that I am too lazy to switch to DISH Network.
I am an evil sister...
this is what my brother Gerard sent to me via email, a touching, lovely soliloquy:
I Wouldn’t Try To Be So Perfect
Anonymous
The following was written years ago by an 85 year old
man who learned he was dying.
If I had my life to live over again, I’d try to make
more mistakes next time. I wouldn’t try to be so
perfect. We all have perfection fetishes. What
difference does it make if you let people know you are
imperfect? They can identify with you then. Nobody can
identify with perfection.
I would relax more. I’d limber up. I’d be sillier than
I’ve been on this trip. In fact, I know few things
that I would take so seriously. I’d be crazier. I’d be
less hygienic. I’d take more chances. I’d take more
trips. I’d climb more mountains. I’d swim in more
rivers. I’d watch more sunsets. I’d go more places
I’ve never seen. I’d eat more ice cream and fewer
beans. I’d have more actual problems and fewer
imaginary ones.
You see, I was one of those people who lived sensibly
and sanely hour after hour and day after day. Oh, I’ve
had my moments, and if I had it to do all over again,
I’d have more of those moments. In fact, I’d try to
have nothing but beautiful moments, moment by moment
by moment. In case you didn’t know it, that’s the
stuff life is made of – only moments. Don’t miss the
now. I’ve been one of those people who never went
anywhere without a thermometer, a hot water bottle, a
gargle, a raincoat and a parachute. If I had to do it
all over again, I’d travel lighter next time.
If I had it to do all over again, I’d start barefoot
earlier in the spring and stay that way later in the
fall. I’d ride more merry-go-rounds, I’d watch more
sunrises, and I’d play with more children. If I had to
do it over again… but you see, I don’t…
Then this is what I wrote back to him:
This was written by your sister who has a sneaking suspicion that she is going
to die someday.
If I had to do it over again...
I would have snuck out of the window when I was 16 and gotten so drunk
that I threw up on the front porch.
I would have stayed up to watch the sunset from the back of that
patrol car, and probably not spit on that one burly dude.
I would have shown up for a few of my classes in high school, and
college, and not cheated on the SAT, the ACT and each of the 5 AP
tests I took.
I would have slept around A LOT, and danced like a skanky whore in
Tijuana. Maybe I would have even eaten those fish tacos from the
vendor on the corner when I was there.
I'd lie to my parents about how college was going, Spend my tuition
money on booze and sell my textbooks for admission to underground
dance clubs.
I would take long road trips with girlfriends, flashing truck drivers
and letting the wind blow through my blond hair without wearing a seat
belt.
If I had to do it over again, I'd stay up later and get up earlier to
do these kind of things each day
. If I had to do it all over again... I ...WAIT.... I don't have
to.... I did all of this.
(you know I'm kidding right?)
this is what my brother Gerard sent to me via email, a touching, lovely soliloquy:
I Wouldn’t Try To Be So Perfect
Anonymous
The following was written years ago by an 85 year old
man who learned he was dying.
If I had my life to live over again, I’d try to make
more mistakes next time. I wouldn’t try to be so
perfect. We all have perfection fetishes. What
difference does it make if you let people know you are
imperfect? They can identify with you then. Nobody can
identify with perfection.
I would relax more. I’d limber up. I’d be sillier than
I’ve been on this trip. In fact, I know few things
that I would take so seriously. I’d be crazier. I’d be
less hygienic. I’d take more chances. I’d take more
trips. I’d climb more mountains. I’d swim in more
rivers. I’d watch more sunsets. I’d go more places
I’ve never seen. I’d eat more ice cream and fewer
beans. I’d have more actual problems and fewer
imaginary ones.
You see, I was one of those people who lived sensibly
and sanely hour after hour and day after day. Oh, I’ve
had my moments, and if I had it to do all over again,
I’d have more of those moments. In fact, I’d try to
have nothing but beautiful moments, moment by moment
by moment. In case you didn’t know it, that’s the
stuff life is made of – only moments. Don’t miss the
now. I’ve been one of those people who never went
anywhere without a thermometer, a hot water bottle, a
gargle, a raincoat and a parachute. If I had to do it
all over again, I’d travel lighter next time.
If I had it to do all over again, I’d start barefoot
earlier in the spring and stay that way later in the
fall. I’d ride more merry-go-rounds, I’d watch more
sunrises, and I’d play with more children. If I had to
do it over again… but you see, I don’t…
Then this is what I wrote back to him:
This was written by your sister who has a sneaking suspicion that she is going
to die someday.
If I had to do it over again...
I would have snuck out of the window when I was 16 and gotten so drunk
that I threw up on the front porch.
I would have stayed up to watch the sunset from the back of that
patrol car, and probably not spit on that one burly dude.
I would have shown up for a few of my classes in high school, and
college, and not cheated on the SAT, the ACT and each of the 5 AP
tests I took.
I would have slept around A LOT, and danced like a skanky whore in
Tijuana. Maybe I would have even eaten those fish tacos from the
vendor on the corner when I was there.
I'd lie to my parents about how college was going, Spend my tuition
money on booze and sell my textbooks for admission to underground
dance clubs.
I would take long road trips with girlfriends, flashing truck drivers
and letting the wind blow through my blond hair without wearing a seat
belt.
If I had to do it over again, I'd stay up later and get up earlier to
do these kind of things each day
. If I had to do it all over again... I ...WAIT.... I don't have
to.... I did all of this.
(you know I'm kidding right?)
26 September, 2004
Room to Read
Room to Read
I just read an article in the San Francisco Chronicle's Sunday magazine and was very impressed by this organization. They have a position open for the fund development manager. I wish I had enough time ( and probably some more experience) so that I could do this job.
I think that is one of my long term goals. I really only have two things left I need to do...become a published author ( I really don't think this counts), and open a wine tasting bar. Somehow along the way I think I would be good at working in the development department of a charity. I had a taste of it when I did some work for Children's Health Council in Palo Alto. Jake was in therapy there at the time, so it was a good fit. Maybe you can't be a charity case and be the development manager; maybe a nut case, but not the actual beneficiary of the philanthropic work. I will have to think on that a bit
As for the published author part, I am working on my book, but it is hard to find the time to write about being a parent of a special needs kid when you actually are a parent of a special needs kid.
We celebrated Jake's birthday today at Four Seasons San Francisco Hotel. A lot of my family from Southern California was in town for the USC vs. Stanfurd game. USC defeated Stanfurd, and we all went to Bucca di Beppo for dinner in Palo Alto on Saturday night.
Today's lunch was held in the private dining room at Seasons restaurant. It was really lovely. Of course Jake got a bit too excited and got ice cream all over Grandma's new St. John's Knit oops. My in-laws made their way over from Berkeley, and a good time was had by all. I mean we did have lunch until 4pm.
Jake passed out on his Daddy's chest before the clock tolled 7pm, and is now happily in bed wearing dinosaur pajamas...I am sure there is still chocolate cake in his teeth, but we will just have to fix that in the morning.
I just read an article in the San Francisco Chronicle's Sunday magazine and was very impressed by this organization. They have a position open for the fund development manager. I wish I had enough time ( and probably some more experience) so that I could do this job.
I think that is one of my long term goals. I really only have two things left I need to do...become a published author ( I really don't think this counts), and open a wine tasting bar. Somehow along the way I think I would be good at working in the development department of a charity. I had a taste of it when I did some work for Children's Health Council in Palo Alto. Jake was in therapy there at the time, so it was a good fit. Maybe you can't be a charity case and be the development manager; maybe a nut case, but not the actual beneficiary of the philanthropic work. I will have to think on that a bit
As for the published author part, I am working on my book, but it is hard to find the time to write about being a parent of a special needs kid when you actually are a parent of a special needs kid.
We celebrated Jake's birthday today at Four Seasons San Francisco Hotel. A lot of my family from Southern California was in town for the USC vs. Stanfurd game. USC defeated Stanfurd, and we all went to Bucca di Beppo for dinner in Palo Alto on Saturday night.
Today's lunch was held in the private dining room at Seasons restaurant. It was really lovely. Of course Jake got a bit too excited and got ice cream all over Grandma's new St. John's Knit oops. My in-laws made their way over from Berkeley, and a good time was had by all. I mean we did have lunch until 4pm.
Jake passed out on his Daddy's chest before the clock tolled 7pm, and is now happily in bed wearing dinosaur pajamas...I am sure there is still chocolate cake in his teeth, but we will just have to fix that in the morning.
Labels:
Berkeley,
special needs,
teeth
21 September, 2004
I think I am an ENFJ
Body
I used to vary each time I took the Myers-Briggs test. ENFT, ENFJ I guess I have never been introverted, but it sure looks like I am settling down.
These are some of my favorite things...
The potential ways in which an ENFJ can irritate others include:
talking too much
assuming they know the needs of others - in trying to help them develop insight, the ENFJ can appear bossy
taking criticism personally
and if I'm not careful....I can:
be very critical and find fault with almost everything
do things to excess - e.g.: eating, drinking or exercising
hmmm sounds like someone I know. Ugh.
I used to vary each time I took the Myers-Briggs test. ENFT, ENFJ I guess I have never been introverted, but it sure looks like I am settling down.
These are some of my favorite things...
The potential ways in which an ENFJ can irritate others include:
talking too much
assuming they know the needs of others - in trying to help them develop insight, the ENFJ can appear bossy
taking criticism personally
and if I'm not careful....I can:
be very critical and find fault with almost everything
do things to excess - e.g.: eating, drinking or exercising
hmmm sounds like someone I know. Ugh.
12 September, 2004
06 September, 2004
Virtual Bubblewrap - Pop Now! Pop bubble wrap online - since 1996
Virtual Bubblewrap - Pop Now! Pop bubble wrap online - since 1996
I am sending my brother a page filled with crazy links.. he is always sending them to me.. try this if you need that OCD fix in the middle of the day.
I am sending my brother a page filled with crazy links.. he is always sending them to me.. try this if you need that OCD fix in the middle of the day.
29 August, 2004
One of Each: Music
One of Each: Music
Looks like one of the founders of the California Golden Overtones is singing with this group.... maybe we can link all of this together.
Looks like one of the founders of the California Golden Overtones is singing with this group.... maybe we can link all of this together.
Berkeleyan 10.03.2001 - Close Encounters
10.03.2001 - Close Encounters
Can it really be that I left college ten years ago? I remember auditioning for the California Golden Overtones like it was yesterday... it was really Spring of 1991...ten years after this article was written.
Some things don't change though... sound like the same old tune to me :)
Can it really be that I left college ten years ago? I remember auditioning for the California Golden Overtones like it was yesterday... it was really Spring of 1991...ten years after this article was written.
Some things don't change though... sound like the same old tune to me :)
27 August, 2004
Disney's Special Access Pass
bloggg: Kid Stuff Archives
We were actually at the park in Southern California the day they "changed the criteria". Our son rides in a stroller that is actually a wheel chair, but since I didn't want to push an extra twenty pounds, and he can't push it himself (and he can walk for short distances) we decided to get hima stroller. Now.... since he looksnormal, and he has a stroller(that was over $1000.00) He doesn't look like he needs a Special Access Pass.
Longer story later....
We were actually at the park in Southern California the day they "changed the criteria". Our son rides in a stroller that is actually a wheel chair, but since I didn't want to push an extra twenty pounds, and he can't push it himself (and he can walk for short distances) we decided to get hima stroller. Now.... since he looksnormal, and he has a stroller(that was over $1000.00) He doesn't look like he needs a Special Access Pass.
Longer story later....
Labels:
autism,
autism blog,
special needs
(Somewhat) Ed-yew-ma-cated Ramblings
TrueMajority
This is such a great explanation of budget etc. Of course, I don't know that it is all as simple as it appears, but it is a good starting point for thinking about it.
How do we keep our nation safe but our schools well-stocked? I think we can do both; can't we?
I actually think the two party system is failing us; it automatically pits one side against the other.
My husband laughs, but I still think the best way to run the country would be to have the winner be the president and the second-up guy be the vice president. Then no one would really be able to bad mouth each other, and the debates might be about something relevant rather than whether or not Bush was a wussy draft dodger and Kerry threw medals and ribbons, or just ribbons, or just medals, and if he was right to protest the war at all.
My brother Gerard just informed me that he is not going to vote. I think that's shameful, but didn't exactly use those words to tell him that. He is disenfranchised for sure... and is adamant that all politicians do is "lie to get your vote", then do "whatever they want" once they are in the White House. Yikes. I am not quite that cynical, but I suppose I am close.
I just can't imagine listening to Kerry's voice for four or eight years.. and I'm positive I can't stand anymore un-ed-yew-ma-cated (although remarkably well-lettered) George Dubbyew.
But politics is kind of like when my husband and I go to the movies:
After finding a babysitter, selecting a film, spending too much money for a cramped seat, we are invariably disappointed with the picture. We talk about it later , but what we always come to is... "What exactly, at this point, would please us?" We have low expectations of actually being thrilled by a movie, even then we are let down. Okay so how does that tie in? Well, I guess I just don't know who could meet my expectations for the White House.
I suppose I do want "The West Wing". Or at least the first couple of seasons. The best part about it? Well, when the audience doesn't like what it sees on the tele, the writers make adjustments to the president's actions.... hmmm now there's a thought...
Whatever... gotta get my kid dressed. We have no medical, physical, dental or auto appointments today, so we are staying in our jammies until noon.
Oops... it's almost 1pm.
This is such a great explanation of budget etc. Of course, I don't know that it is all as simple as it appears, but it is a good starting point for thinking about it.
How do we keep our nation safe but our schools well-stocked? I think we can do both; can't we?
I actually think the two party system is failing us; it automatically pits one side against the other.
My husband laughs, but I still think the best way to run the country would be to have the winner be the president and the second-up guy be the vice president. Then no one would really be able to bad mouth each other, and the debates might be about something relevant rather than whether or not Bush was a wussy draft dodger and Kerry threw medals and ribbons, or just ribbons, or just medals, and if he was right to protest the war at all.
My brother Gerard just informed me that he is not going to vote. I think that's shameful, but didn't exactly use those words to tell him that. He is disenfranchised for sure... and is adamant that all politicians do is "lie to get your vote", then do "whatever they want" once they are in the White House. Yikes. I am not quite that cynical, but I suppose I am close.
I just can't imagine listening to Kerry's voice for four or eight years.. and I'm positive I can't stand anymore un-ed-yew-ma-cated (although remarkably well-lettered) George Dubbyew.
But politics is kind of like when my husband and I go to the movies:
After finding a babysitter, selecting a film, spending too much money for a cramped seat, we are invariably disappointed with the picture. We talk about it later , but what we always come to is... "What exactly, at this point, would please us?" We have low expectations of actually being thrilled by a movie, even then we are let down. Okay so how does that tie in? Well, I guess I just don't know who could meet my expectations for the White House.
I suppose I do want "The West Wing". Or at least the first couple of seasons. The best part about it? Well, when the audience doesn't like what it sees on the tele, the writers make adjustments to the president's actions.... hmmm now there's a thought...
Whatever... gotta get my kid dressed. We have no medical, physical, dental or auto appointments today, so we are staying in our jammies until noon.
Oops... it's almost 1pm.
22 August, 2004
Camping in Carmel
www.saddlemountaincamping.com
well, we are off today to camp with the family in Carmel Valley. Hopefully Jake won't run off. At least the dogs will be at home... Normally I worry... we are going to lose a kid or a dog. I think this time I will just lose my mind. Jake didn't sleep last night, and he seemed a little overwhlemed by his cousins (both girls, both super smart, both very active)
Prayer is the only thing that is going to get us through camping.. oh, and valium. Yes valium. and wine... (but never together of course)
well, we are off today to camp with the family in Carmel Valley. Hopefully Jake won't run off. At least the dogs will be at home... Normally I worry... we are going to lose a kid or a dog. I think this time I will just lose my mind. Jake didn't sleep last night, and he seemed a little overwhlemed by his cousins (both girls, both super smart, both very active)
Prayer is the only thing that is going to get us through camping.. oh, and valium. Yes valium. and wine... (but never together of course)
Labels:
autism,
autism blog,
camping,
family,
medication,
Prayer
12 August, 2004
Special Child: Disorder Zone Archives - Angelman Syndrome
Special Child: Disorder Zone Archives - Angelman Syndrome
Hmmm I wonder if this is what Jack has? Angelman syndrome.
Angelman syndrome is a rare neuro-genetic disorder that is predominantly (70-75% of cases), caused by deletions on chromosome 15 given by the mother.
Other classes of AS that also lead to the typical clinical features of the syndrome are:
- unusual chromosome rearrangements (2%),
- inheritance of two paternal 15's and no maternal 15 present (4%),
- mutation in the imprinting center or UBE3A gene (3-5%)
- unknown causes (15%).
Currently, it is estimated that the incidence of AS is somewhere between 1 in 15,000 to 1 in 30,000, and the greatest majority of cases are of Caucasian origin. Males and females are affected equally.
Hmmm I wonder if this is what Jack has? Angelman syndrome.
Angelman syndrome is a rare neuro-genetic disorder that is predominantly (70-75% of cases), caused by deletions on chromosome 15 given by the mother.
Other classes of AS that also lead to the typical clinical features of the syndrome are:
- unusual chromosome rearrangements (2%),
- inheritance of two paternal 15's and no maternal 15 present (4%),
- mutation in the imprinting center or UBE3A gene (3-5%)
- unknown causes (15%).
Currently, it is estimated that the incidence of AS is somewhere between 1 in 15,000 to 1 in 30,000, and the greatest majority of cases are of Caucasian origin. Males and females are affected equally.
Labels:
autism,
autism blog
Lucile Packard Children's Hospital Gregory M. Enns, MD
Lucile Packard Children's Hospital Find a Physician
Well, we are going to go back to the drawing board with Jake... back to genetics. It is difficult to know whether we have ruled out everything we should, and while it doesn't really matter, and it won't affect what kind of services we offer him... it will help us decide whether we have another child.
Of course it will take forever to get back into the genetics clinic. I think it took six months last time.... But Gregory Enns is great. Terrific sense of humor, smart and honest. We felt very taken care of. Of course I wish we had waited a bit... so I could have known which questions to ask.
Well, we are going to go back to the drawing board with Jake... back to genetics. It is difficult to know whether we have ruled out everything we should, and while it doesn't really matter, and it won't affect what kind of services we offer him... it will help us decide whether we have another child.
Of course it will take forever to get back into the genetics clinic. I think it took six months last time.... But Gregory Enns is great. Terrific sense of humor, smart and honest. We felt very taken care of. Of course I wish we had waited a bit... so I could have known which questions to ask.
22 July, 2004
California Golden Overtones Website is live
California Golden Overtones
I know that this is really very silly, but I am trying to get a little bit of my life taken care of at a time. Next on the list is to finish my project at work, then put together the welcome back to school packets for the PTA for my kid's school. I would also like to clean out my hall closet...just a little bit at a time.
I know that this is really very silly, but I am trying to get a little bit of my life taken care of at a time. Next on the list is to finish my project at work, then put together the welcome back to school packets for the PTA for my kid's school. I would also like to clean out my hall closet...just a little bit at a time.
14 July, 2004
Senate Blocks Bush Move to Ban Same-Sex Marriage Reuters.com
Top News Article Reuters.com
Thank goodness. I am so embarrassed that our country could even contemplate legislating discrimination. What about the separation between church and state? If a church doesn't want to sanction a gay marriage fine, but the state? I don't understand. Isn't it better overall to have people making commitments to care for each other? What a nightmare.
I find it very interesting that the Far Right wants less government...Unless it comes to our bedrooms and our sexuality.. Then they are happy to waste bureaucratic dollars trying to legislate morality and dictate who we can love.
If I feel this way ( and I'm not even gay) how on earth must it feel to be gay and be so marginalized?
My husband keeps telling me that I am a republican. My mother tells me that "When she was young and stupid she voted as a democrat too". I admit that up until about 7 years ago I actually thought that if you received welfare, you actually had to DO something to get it. You know, sweep streets, fill potholes, babysit for someone... something. I was so embarrassed when my then boyfriend, now husband told me that actually, no you can just get the money.
How odd. I know it would be a bureaucratic mess to deal with, but isn't there a mess of things that need to get done around here?
Of course I know that I am completely insane because I also think that if your job is a grocery bagger, you should be the best grocery bagger you can be, because THAT IS YOUR JOB. Same goes if you are a CEO, a Comcast repair person, a mail carrier, a teacher, a waitress at the suckiest Johnny Rockets on the Planet. If you are there, and someone is paying you, no matter how little you are making... why not try really hard and do the best you can? I don't understand people who don't. Do they have parents or caretakers who taught them nothing? Do they lack a sense of pride, or a sense of shame? I guess they might look at it like "Well, all I am doing is serving fries so who cares?" Whereas I guess I look at it as "If you can't even get serving fries right, how are you ever going to do anything else but this?"
I don't think this makes me a Republican, in fact, I think it makes me a Socialist doesn't it? Each person using their skills to the best of their ability to serve the common good? Maybe I'm not that far. I just think if maybe we all tried just a little bit harder, to be good, to be nice to each other, to recycle and throw away our trash in a can and not out the windows of our cars, and we taught our children to read and play games and to respect their elders... if we bothered to learn a language other than English, and studied World religions, and we served our fries with a smile while they were hot.. it would be a better place. Really.
Thank goodness. I am so embarrassed that our country could even contemplate legislating discrimination. What about the separation between church and state? If a church doesn't want to sanction a gay marriage fine, but the state? I don't understand. Isn't it better overall to have people making commitments to care for each other? What a nightmare.
I find it very interesting that the Far Right wants less government...Unless it comes to our bedrooms and our sexuality.. Then they are happy to waste bureaucratic dollars trying to legislate morality and dictate who we can love.
If I feel this way ( and I'm not even gay) how on earth must it feel to be gay and be so marginalized?
My husband keeps telling me that I am a republican. My mother tells me that "When she was young and stupid she voted as a democrat too". I admit that up until about 7 years ago I actually thought that if you received welfare, you actually had to DO something to get it. You know, sweep streets, fill potholes, babysit for someone... something. I was so embarrassed when my then boyfriend, now husband told me that actually, no you can just get the money.
How odd. I know it would be a bureaucratic mess to deal with, but isn't there a mess of things that need to get done around here?
Of course I know that I am completely insane because I also think that if your job is a grocery bagger, you should be the best grocery bagger you can be, because THAT IS YOUR JOB. Same goes if you are a CEO, a Comcast repair person, a mail carrier, a teacher, a waitress at the suckiest Johnny Rockets on the Planet. If you are there, and someone is paying you, no matter how little you are making... why not try really hard and do the best you can? I don't understand people who don't. Do they have parents or caretakers who taught them nothing? Do they lack a sense of pride, or a sense of shame? I guess they might look at it like "Well, all I am doing is serving fries so who cares?" Whereas I guess I look at it as "If you can't even get serving fries right, how are you ever going to do anything else but this?"
I don't think this makes me a Republican, in fact, I think it makes me a Socialist doesn't it? Each person using their skills to the best of their ability to serve the common good? Maybe I'm not that far. I just think if maybe we all tried just a little bit harder, to be good, to be nice to each other, to recycle and throw away our trash in a can and not out the windows of our cars, and we taught our children to read and play games and to respect their elders... if we bothered to learn a language other than English, and studied World religions, and we served our fries with a smile while they were hot.. it would be a better place. Really.
13 July, 2004
Great Cause. Great Weekend?
Completed the AVON Walk for Breast Cancer this last weekend in San Francisco with my dear friend Bridquet. The good news is that the walking was not difficult at all for me. It was actually hanging out with all of the people. It was really quite like a sorority...all the tchotchke stuff and the pink and the special hats and t-shirts.
We made our shirts at Custon Ink I guess I got carried away... they said "Save the Boobies" with a pink ribbon. They really were very cute.... I thought it would put me more in the mood.
Basically I think that I would crew the event..or I would raise money for the event, but I just don't think I ever want to be on the receiving end of "GOOD JOB WALKERS!" EVER EVER again. I know they meant well....and perhaps if I were actually a breast cancer survivor I would have felt more 'proud' to be walking...but honestly I just don't think walking is all that hard for me. It was hard to raise $1910 dollars ( actually not that hard at all. I have very generous friends) AND I suppose it IS true that probably none of them would have just given me the money to donate if they didn't think I was working hard on something ( though many thought that it was a good cause whether I walked or not.) I just didn't think I was very remarkable for walking.
It was all just sort of weird and odd.
I am still glad I did it, but I am not glad that the woman in the tent next to me was so important that she had to manage 6 business calls in a loud voice from her tent at 3am. Apparently she works for Citibank...and she is very important....she must be very very important for people to call her at three in the morning about an alarm going off at a place where they are actually doing construction, so the alarm shouldn't even have been set. I know all of this because she did not exactly keep her voice down..despite being in the midst of about 1800 sleeping people. Oh and she answered the phone on the fourth ring of her cell phone..Oh and her cell phone was set on full loud super ring..Oh and it was a ring from hell..like DEEEEET deeeeeedle DEEEEEET deeeedle DEEEEEEEEEEEtDEEEET DETTTTTETETETETETTE
ARGHHH!
So yeah.. and did I mention that they ran out of food, served my vegetarian friend ( who had registered as a vegetarian) ONE pancake for breakfast ( though those in line before and after received more), they ran out of coffee, didn't set up most of the tents ( and those they did set up blew away because they were left un-staked), lost several bags... yeah that was the good stuff :)
Great cause...not a great weekend
We made our shirts at Custon Ink I guess I got carried away... they said "Save the Boobies" with a pink ribbon. They really were very cute.... I thought it would put me more in the mood.
Basically I think that I would crew the event..or I would raise money for the event, but I just don't think I ever want to be on the receiving end of "GOOD JOB WALKERS!" EVER EVER again. I know they meant well....and perhaps if I were actually a breast cancer survivor I would have felt more 'proud' to be walking...but honestly I just don't think walking is all that hard for me. It was hard to raise $1910 dollars ( actually not that hard at all. I have very generous friends) AND I suppose it IS true that probably none of them would have just given me the money to donate if they didn't think I was working hard on something ( though many thought that it was a good cause whether I walked or not.) I just didn't think I was very remarkable for walking.
It was all just sort of weird and odd.
I am still glad I did it, but I am not glad that the woman in the tent next to me was so important that she had to manage 6 business calls in a loud voice from her tent at 3am. Apparently she works for Citibank...and she is very important....she must be very very important for people to call her at three in the morning about an alarm going off at a place where they are actually doing construction, so the alarm shouldn't even have been set. I know all of this because she did not exactly keep her voice down..despite being in the midst of about 1800 sleeping people. Oh and she answered the phone on the fourth ring of her cell phone..Oh and her cell phone was set on full loud super ring..Oh and it was a ring from hell..like DEEEEET deeeeeedle DEEEEEET deeeedle DEEEEEEEEEEEtDEEEET DETTTTTETETETETETTE
ARGHHH!
So yeah.. and did I mention that they ran out of food, served my vegetarian friend ( who had registered as a vegetarian) ONE pancake for breakfast ( though those in line before and after received more), they ran out of coffee, didn't set up most of the tents ( and those they did set up blew away because they were left un-staked), lost several bags... yeah that was the good stuff :)
Great cause...not a great weekend
02 July, 2004
Netflix Fan
Netflix Fan
SO scary we were just talking today about this problem Netflixia. There are two discs in our house wandering around in a folder labeled "TO DO" uhm mark that not done. For the last three months I think.
SO scary we were just talking today about this problem Netflixia. There are two discs in our house wandering around in a folder labeled "TO DO" uhm mark that not done. For the last three months I think.
Listening in on a nation?
This is a wacky website of all things recorded. I thought I wouldn't get here until my mid nineties
What a relief
FireDispatch.com
It seems rather strange to be so happy that my house is not about to burn down, when possibly some else's house is... Jean Gonick has it right to feel unlucky in the land of the lucky just because I am not as lucky as the luckiest
It seems rather strange to be so happy that my house is not about to burn down, when possibly some else's house is... Jean Gonick has it right to feel unlucky in the land of the lucky just because I am not as lucky as the luckiest
18 June, 2004
10 June, 2004
MACLAREN MAJOR ELITE
MACLAREN MAJOR ELITE
Arghhh we want this stroller. It would make our life so much easier. It is amazing.. Even though we didn't get a wheelchair...therefore spending about $1200 bucks for a little Pixie instead of $10,000...we still can't seem to convince the powers that be that it would give our child more access to life (not to mention help out my back) if we could get something a bit more manageable. What a pain.
Arghhh we want this stroller. It would make our life so much easier. It is amazing.. Even though we didn't get a wheelchair...therefore spending about $1200 bucks for a little Pixie instead of $10,000...we still can't seem to convince the powers that be that it would give our child more access to life (not to mention help out my back) if we could get something a bit more manageable. What a pain.
Labels:
autism,
baby,
special needs
13 May, 2004
Taking the Curve too fast
Okay so I joined Curves www.curvesinternational.com. with a friend... i am a dork... walking is free, but I have decided to pay $39.00 a month to go somewhere and hear a lady say "change stations now", "step away from your station....and let's check your pulse in 3-2-1 okay"
I had a great time on my first visit. I was also very depressed. I want it all to happen now. I don't want to go 100 visits to get a great new body. I want a mind and body change NOW! Ahh it is great to be part of this instant gratification generation isn't it?
I spoke with my parents this morning, the football/Catholic/Orange County ones --I asked how they felt about John Kerry. I really wanted to know. Bad choice. I didn't say I liked John Kerry and they were all over me, with my mother saying " When I was young and stooopid, I voted democrat too." Ugh. I want Gavin Newsome for president. Wouldn't that be great?
I had a great time on my first visit. I was also very depressed. I want it all to happen now. I don't want to go 100 visits to get a great new body. I want a mind and body change NOW! Ahh it is great to be part of this instant gratification generation isn't it?
I spoke with my parents this morning, the football/Catholic/Orange County ones --I asked how they felt about John Kerry. I really wanted to know. Bad choice. I didn't say I liked John Kerry and they were all over me, with my mother saying " When I was young and stooopid, I voted democrat too." Ugh. I want Gavin Newsome for president. Wouldn't that be great?
Labels:
frustration,
health,
home improvement,
politics
06 May, 2004
Christmas Ducks
What a strange thing I just told my husband, and my friend Jodelle about this BLOG. I know that it is posted on the World Wide Web, but I don't think anyone else had ever read it...
***********************
My dad just called and wanted to know if I had seen the Christmas Ducks.
I said, "I have never seen any Christmas Ducks".
and he said, "Yes, you have, they come out every year for you. AND I had saved them for you. AND now when we open the box, we can't find the Christmas Ducks."
"Maybe Demanda took them." I say jokingly.
"No, Jennyalice. Demanda did NOT take the Christmas ducks." Demanda is my sister, and was prone to liberating items for her personal use from me as a teenager.
"Maybe Jaster?" Who is my sister's husband, and a pastor, and not prone to stealing things.
"No. Jennyalice, no one stole the Christmas ducks from you. Do you want a Noah's ark? It is filled with animals."
"Is it made of wood?", "Are the animals inside made of wood?" I ask, keenly, oddly, interested
"Yes, they are."
"Yes, please dad. That would be lovely. Wait, where on earth are you?" Is he out shopping? I don't need anyone to BUY me anything. Finding something fine, but buying, spending hard earned cash on me... not okay.
"I'm at home. I bought all of these things for my children. For Christmas, but we don't celebrate any more."
I think how sad this statement is. It is so true, we have such a hard time gathering as a group anymore. Toys stay in their original boxes, never even looked at before being stored in the attic. Perhaps later we'll find them and sell them on eBay for double there original price. He keeps buying things for us, for my son... but things are so distant, we don't even know these treasures exist.
"Demanda will bring you a Noah's ark." You will each have one, but yours will be better."
He says this seriously. I think he believes I really was hurt that my step-sister got his grandmother's old 1940's radio, art deco wicker chair and various sundry items. I guess I was hurt enough to notice, but not by the gesture that she would have the items. Not at all.
She is my sister in ways that blood would never confirm. Sisters by choice is a lot better than sisters by chance. No, I was hurt because I did not have the ability to visit his house and see his treasures... family treasures, family history. Cut off by distance, and time and lack of money and allergies and engine trouble and all sorts of stooopid things I have managed to withdraw from my life in Southern California so completely that I no longer even get the hand-me-down bed Gloria (my mom, the one who carried me) is giving to my little brother (the one by blood, Gerard), or the beautiful wicker rocker Demanda has in her guest room.
I am not more deserving than any of the other kids, more appreciative or even by a longshot, a better kid... it's just, well, I am not even offered the items anymore. This is kind of a weird thing when you are the oldest, and used to being the one who gets to pass on the first showcase. I wonder if I should get a name tag.
***********************
My dad just called and wanted to know if I had seen the Christmas Ducks.
I said, "I have never seen any Christmas Ducks".
and he said, "Yes, you have, they come out every year for you. AND I had saved them for you. AND now when we open the box, we can't find the Christmas Ducks."
"Maybe Demanda took them." I say jokingly.
"No, Jennyalice. Demanda did NOT take the Christmas ducks." Demanda is my sister, and was prone to liberating items for her personal use from me as a teenager.
"Maybe Jaster?" Who is my sister's husband, and a pastor, and not prone to stealing things.
"No. Jennyalice, no one stole the Christmas ducks from you. Do you want a Noah's ark? It is filled with animals."
"Is it made of wood?", "Are the animals inside made of wood?" I ask, keenly, oddly, interested
"Yes, they are."
"Yes, please dad. That would be lovely. Wait, where on earth are you?" Is he out shopping? I don't need anyone to BUY me anything. Finding something fine, but buying, spending hard earned cash on me... not okay.
"I'm at home. I bought all of these things for my children. For Christmas, but we don't celebrate any more."
I think how sad this statement is. It is so true, we have such a hard time gathering as a group anymore. Toys stay in their original boxes, never even looked at before being stored in the attic. Perhaps later we'll find them and sell them on eBay for double there original price. He keeps buying things for us, for my son... but things are so distant, we don't even know these treasures exist.
"Demanda will bring you a Noah's ark." You will each have one, but yours will be better."
He says this seriously. I think he believes I really was hurt that my step-sister got his grandmother's old 1940's radio, art deco wicker chair and various sundry items. I guess I was hurt enough to notice, but not by the gesture that she would have the items. Not at all.
She is my sister in ways that blood would never confirm. Sisters by choice is a lot better than sisters by chance. No, I was hurt because I did not have the ability to visit his house and see his treasures... family treasures, family history. Cut off by distance, and time and lack of money and allergies and engine trouble and all sorts of stooopid things I have managed to withdraw from my life in Southern California so completely that I no longer even get the hand-me-down bed Gloria (my mom, the one who carried me) is giving to my little brother (the one by blood, Gerard), or the beautiful wicker rocker Demanda has in her guest room.
I am not more deserving than any of the other kids, more appreciative or even by a longshot, a better kid... it's just, well, I am not even offered the items anymore. This is kind of a weird thing when you are the oldest, and used to being the one who gets to pass on the first showcase. I wonder if I should get a name tag.
19 April, 2004
We have your results...everything and nothing is okay
SO we got back the results from the kid's LP (that's lumbar puncture for the less cool of you). His brain juice is perfect..absolutely nothing out of the ordinary. Of course it is. Of course there's nothing wrong. That would be horrible, and so comforting, just to know.. to finally have an answer...but alas...no medication can help the tyke and we are back where we started with just a few more what-if's crossed off our list.
Labels:
autism,
autism blog
29 March, 2004
lumbar punctures and sprained ankles
sort of like raindrops on roses and whiskers on kittens but not quite.
Labels:
autism,
autism blog
24 February, 2004
Sitting on the dock of the eBay
My kid bit his teacher today. No blood, so I laughed and said "that's nothing, you should see my scars". Of course this really didn't make anyone feel better. It is a constant ache to have a child with a disability... always a drama with a doctor's appointment or a therapist or brush therapy or medications or health insurance or the lack of health insurance.
I have an education, from a good school even, I have had a great career at a Fortune 500 company. I have started my own consulting business, and yet, I am at a constant loss as to how best to go about this business of being my kid's mom. This project is so much larger than I could ever have imagined, and while I sometimes wonder why I took out all of those student loans, just so I would one day be a "stay-at-home-mom" I am so glad I did.. SO glad that I worked my mind and problem solved, and read great literature and met amazing people, that I traveled and have foreign language and worked while I did all of those things.. because I can be such a better advocate for my child...because I have worked with arrogant people before (I liken CEOs and neurologists to be of a similar breed) , I have dealt with financial aide to get through school (so similar to the medi-Cal office... except I really wish I had taken Spanish now).. and because I have had financial freedom, and world travel, I do not feel like I am stuck and have never had anything or been anywhere, like so many parents...especially parents of special needs kids feel. I have tasted that life, I know what it looks like and we will do all of those things again... we might wait until the kid can walk a bit better rather than take a wheelchair across cobblestone and up elevators too small to hold us and our packs, but we will do it again. We were good at it together then, the hubbins and I ... and we will be even better the kiddo.
Anyway, I can't seem to keep my head down and work. I am trying, but as a consultant I don't have the same time pressures, and because my time is my own... here in a little cubby at an office, I feel so fantastic, I hardly want to work on something so banal as a policy manual. So I find myself shopping eBay, googling old friends (like Nicole Eggert? jeesh what came over me?), and staring off into space before venturing off to the Company kitchen to get some HOT tea.... I even drank it while it was hot.
I have an education, from a good school even, I have had a great career at a Fortune 500 company. I have started my own consulting business, and yet, I am at a constant loss as to how best to go about this business of being my kid's mom. This project is so much larger than I could ever have imagined, and while I sometimes wonder why I took out all of those student loans, just so I would one day be a "stay-at-home-mom" I am so glad I did.. SO glad that I worked my mind and problem solved, and read great literature and met amazing people, that I traveled and have foreign language and worked while I did all of those things.. because I can be such a better advocate for my child...because I have worked with arrogant people before (I liken CEOs and neurologists to be of a similar breed) , I have dealt with financial aide to get through school (so similar to the medi-Cal office... except I really wish I had taken Spanish now).. and because I have had financial freedom, and world travel, I do not feel like I am stuck and have never had anything or been anywhere, like so many parents...especially parents of special needs kids feel. I have tasted that life, I know what it looks like and we will do all of those things again... we might wait until the kid can walk a bit better rather than take a wheelchair across cobblestone and up elevators too small to hold us and our packs, but we will do it again. We were good at it together then, the hubbins and I ... and we will be even better the kiddo.
Anyway, I can't seem to keep my head down and work. I am trying, but as a consultant I don't have the same time pressures, and because my time is my own... here in a little cubby at an office, I feel so fantastic, I hardly want to work on something so banal as a policy manual. So I find myself shopping eBay, googling old friends (like Nicole Eggert? jeesh what came over me?), and staring off into space before venturing off to the Company kitchen to get some HOT tea.... I even drank it while it was hot.
Labels:
Berkeley,
special needs
20 January, 2004
WHoo HOOOO! Jake had a good day at school.
Jake is out of the episode. He slept all night last night. I am so relieved.. He also had a great day at school. We had to rush for the bus again.. that kid can really be a cranky pants when he doesn't want to get dressed. Rush rush rush.. we were fine on time, but the bus was already there. I hate that, it makes me feel like I am late. I hate to make others wait for me. And of course our neighbor is sitting in his car, ready to start his " I'm cool, and hip 'cause I'm an artist" day...just watching me rush by with my Ataxic child in his bright yellow wheelchair/stroller and me in my Old Navy yoga pants and tennis shoes my mom bought me (because I can't afford to buy $125.00 tennis shoes for my self) and to think I thought I looked great five minutes ago.. before Jake and I had that spat about him getting dressed.. because I am going on another 3 mile walk, **all by my self**.... and now I am just another frazzled looking stay-at-home mom who is racing to the bus with her kid.
Of course, I walked and felt like a million bucks afterwards. Had some POM with tangerine. Some of the best stuff on the planet..almost worth the $4 a pop for a single serve (normally I save some and put it with club soda over ice... or worse yet, tastes great with vodka!but I drank up almost the entire thing!)
Got dressed and went to pick up Jake from school... GREAT DAY WHOOOOOO HOOOOOOO! What a relief! I am so sad when he is hard for the teacher to deal with. The last thing I ever wanted to have was a child who was disruptive in school... and now he's disruptive in the special class. great. isn't that special. but who cares, today was good!
So now he is at home and I am at work (obviously not working) and I miss him terribly. This whole thing about women of this generation having it all? well we don't.... I am no longer making over 100k and I am also not really a full-time stay at home mom. I have sacrificed a little of both here... sometimes it feels like a lot of both. And now I have a friend asking me to interview for a position at the company she works for in Cupertino... but that would mean traffic and real work... and a real salary, and real day-care, and a ugh I just don't know.
Of course, I walked and felt like a million bucks afterwards. Had some POM with tangerine. Some of the best stuff on the planet..almost worth the $4 a pop for a single serve (normally I save some and put it with club soda over ice... or worse yet, tastes great with vodka!but I drank up almost the entire thing!)
Got dressed and went to pick up Jake from school... GREAT DAY WHOOOOOO HOOOOOOO! What a relief! I am so sad when he is hard for the teacher to deal with. The last thing I ever wanted to have was a child who was disruptive in school... and now he's disruptive in the special class. great. isn't that special. but who cares, today was good!
So now he is at home and I am at work (obviously not working) and I miss him terribly. This whole thing about women of this generation having it all? well we don't.... I am no longer making over 100k and I am also not really a full-time stay at home mom. I have sacrificed a little of both here... sometimes it feels like a lot of both. And now I have a friend asking me to interview for a position at the company she works for in Cupertino... but that would mean traffic and real work... and a real salary, and real day-care, and a ugh I just don't know.
Labels:
autism,
autism blog
19 January, 2004
just getting started
Jake is coming out of an episode. It's hard to say if they are really getting better. It seems like they are farther apart, and last longer, but they aren't as drastic as they were before...no blood, no black eyes. Well, actually I guess he did break my nose during the last episode in November. I can't wait until he's a daddy and I can tell him that one when he is whining about some little parenting nightmare of his own. So far he's only three and he's given me a black eye, a broken nose, and bruised eye socket, permanent scars on my hand form his biting, and those are just the things I haven't blocked from my memory.
I have been thinking about writing a book "How to Really Survive with a Special-Needs Kid." Not only does no one tell you how hard parenting really is, but certainly no one knows how to prepare you for raising a special needs kid. Though I suppose, even if I wrote a book, and made it specific to the bay area, it still wouldn't capture the "how to's" for most of the people we know. My husband I and I use dark humor to get through most days, peppered with crying (me), swearing (me) drinking too much Charles Shaw (both of us) and watching mindless television (Descartes).
I have been thinking about writing a book "How to Really Survive with a Special-Needs Kid." Not only does no one tell you how hard parenting really is, but certainly no one knows how to prepare you for raising a special needs kid. Though I suppose, even if I wrote a book, and made it specific to the bay area, it still wouldn't capture the "how to's" for most of the people we know. My husband I and I use dark humor to get through most days, peppered with crying (me), swearing (me) drinking too much Charles Shaw (both of us) and watching mindless television (Descartes).
Labels:
autism,
episodes,
school,
special needs,
TV
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all writing by me © 2004-21 (unless otherwise noted)
The opinions on this blog are my own, and in no way represent the many groups, foundations and communities with whom my name may be associated.
The opinions on this blog are my own, and in no way represent the many groups, foundations and communities with whom my name may be associated.