June 11, 2008

My daughter's first long summer and she doesn't want to go to camp

SwimmingMy daughter is "graduating" from Kindergarten on Wednesday and so will begin her first official summer.  Sure she's had summer breaks in preschool, but I always signed her up for summer preschool.  Before any type of school, she simply grew as the seasons passed and I needed to put her in slightly different clothes.   For the first time, she has three months of no school aka summer.

My daughter has opted only to sign up for swim lessons half an hour a week for the entire summer, three days of camp at Happy Hollow and one week of gym camp.  So far she's refused repeated offers of other camps and classes and the bay area offers a ton.  I'm not sure whether to be pleased that she recognizes that acres of free time shrink smaller and smaller as one ages until they're reduced to a precious commodity, or that she simply can't comprehend how long a (relatively) hot summer can be.  Her younger brother will be attending summer preschool part of the time, so it will be just me and her for some of the day.

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January 19, 2008

Stay-at-home server not appropriate for kids

Microsoft has hit back at the funny Mac/PC ads with its own web site

The ads are funny, but also touch on a few more important Mom issues like the decision to stay at home being wimpy.  I am a stay-at-home mother. Ironically we have a Microsoft work server at home.  My husband works one day a week at home.

However the ads and the website mention little about security, my chief concern.  Due to my concerns about my children's safety, the Microsoft Media Server sits in our bedroom.  This is not my place of choice.  It's rather noisy.  It turns on at random times in the night.  My husband talks about tuffing it out to the study where our other servers live, but I refuse.  Microsoft has always had a poor record of security and in its line of media it's awful. 

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January 03, 2008

Things I never thought I'd say or do as a parent

Mcj043480500001_3 "Stop reading and put on your shoes."
"Don't use the dark force on your brother." (while playing Lego Star Wars)
"Stop drinking vinegar."
"No thanks, I don't like strawberries, lettuce and vinaigrette dressing."
Check labels for the highest fat content. (My son's is being weaned off a feeding tube.)

What's your list?

December 06, 2007

Reluctant Lactivist

I found out sometime last year that I'm a lactivist or at least the NY Times told me so.

Ironically when the article came out, much of my breastfeeding was a very private affair.  You see, I was almost exclusively pumping due to my son's health problems.  And there's really no discreet way to pump in public. Only Madonna wears huge breastfeeding horns in public.

My son would breastfeed once a day but only in the most private of circumstances.  A dream (not a wet one) of those who would ban breastfeeding from public places.

But I never felt dirty or embarrassed breastfeeding. I've never received any comments or dirty looks or been asked to stop. Most of the time the world seemed oblivious to the fact that I was breastfeeding. With my daughter who has always been healthy and focused on food, we breastfeed anytime anywhere she was hungry.

Maybe it's living in Silicon Valley. Maybe it's because my Burmese mother taught me that breastfeeding was normal and natural and I watched both of my siblings breastfeed. Or maybe it's because I'm

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December 05, 2007

How do you take holiday photo cards?

I've blogged before about my photo phobia, and holiday cards are no exception.  Try to get two small children to look at the camera and smile at the same time.  For me, it involves me singing Christmas carols, bribes of candy.  Even then the photo comes out looking like I have two slightly deranged children (usually only mad when trying to get them ready for school or photos), instead of two adorable children (which they are most of the time).  As you can see, I have photographic proof that photos of my children looking adorable at the same time can be taken, but they aren't looking at the camera.  And the dear friend who took this photo has other things to do.  This was an entire afternoon of her time. Does anyone have tips for me? I took over 30 photos with the digital before patience gave way.  I'm not sure if it was me or the kids who were more sick of the whole process. 

And while I wish I could use this photo, my son has grown just a bit since then.  He was under two when this photo was taken and is now just over three.

September 29, 2007

Dear smiley face school bus driver

You signed your note with a smiley face instead of your name.  From how you wrote your note I presume you're the driver that will be taking my son to preschool. I still don't know what you look like but I at least know you don't look like this: since you're both female and I can't imagine him leaving a note like that.

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September 21, 2007

Chicago Mom Blogger banned from hospital

I can not read my friend and fellow Chicago Moms Blogger Mary Anne's blog from my son's hospital. Her blog now contains cute baby pictures,  but yes she does write porn. I'm amused by the idea of a hospital blocking cute baby photos and a bit sad since they do brighten my day.

I understand that the hospital doesn't want people even parents viewing photos of porn in what is essentially a public place.  Even in my son's room people walk in and out all the time.  I do agree that seeing a porn image without one's consent is sexual harassment and doesn't belong in a hospital,  especially a children's hospital.  But I read her mommy blog posts only. And I can read this blog and any other Mommy blog to my heart's content and some even talk about *gasp* sex. Ironically Mary Anne recently wrote a post Things I'm Scared to Blog About.

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When will a president care about the fat and sugar offered to kids every day by the US government?

I am worried that the school will make my daughter fat and unhealthy with bad food choices.  Is she going off to college?  No she's going to kindergarten.

I looked at the school lunch menu for the entire months of August and September.  I see items I might feed my child once in a while like hamburgers but not every day.  During the Reagan era ketchup was declared a vegetable but I thought perhaps naively that things had gotten better with all these drive to get healthy.  In fact at the bottom the menu declares in bold letters "Off to" (in an apple) A great Start"  I also thought I could control whether or not my daughter ate lunch at school by choosing to give her money.  No now they have a new convenient "card swipe system" so my child needs no money at all.  It's a heavy burden for a five year old to make healthy choices and I am disappointed but unsurprised that I see so few healthy choices to make.  The government rails that kids are fat and then offers them a host of fattening food subsided for $.40 to low income families. When will school meals actually become healthy instead of a victim of special interest groups?  When will one of the presidential candidates actually speak up about this issue? I am listening and waiting and I am angry at the hypocrisy.

Here's Monday's lunch menu:

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September 12, 2007

Mom I love Kindergarten but I want to go back to preschool

Thida_2My daughter is not just attending Kindergarten now, but a real person to her teacher among her class of 20.  No mean feat in a little under a week but I was not the one who named her Special K.  She is the proud recipient of two gold stars and a "Your daughter can read."  Why yes she can.

My younger child my son goes everyday and sits and reads with her so in his mind he's going to Kindergarten too.  Already at five my daughter sees growing up is a mixed bag.  That she has said goodbye to her beloved preschool and she can never go back. She tells me "I want to go back to being a baby and then back to preschool and then again to Kindergarten and round again."  I did not really learn this lesson until my daughter was half done being a baby and I realized the time had gone by so quickly and in my rush to get out of the sheer drudgery of her day-to-day care I had not appreciated enough her basic good health and just babyness.  I did appreciate her as a person and I did relax during breastfeeding. 

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September 10, 2007

Madeline L'Engle's time has passed and I regret I never wrote

Thida_1With the death of Luciano Pavarotti and Madeline L'Engle, two icons of my childhood have died one day apart. Madeline L'Engle was primarily famous for her children's books especially a Wrinkle In Time.

I read her books relatively late in my young reading life. I didn't move to the US until I was nine but I remember Meg well. A Wrinkle In Time was the first book I read about someone who was awkward and angry at a world who didn't accept her but lived in a quirky intellectual family that clearly loved her but didn't always understand her either. Like Meg's family my parents reacted with bafflement that the world didn't appreciate my wit and intellect and in fact teased and derided the very things my parents valued the most about me.

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August 17, 2007

Has Harry Potter lost its appeal or I have gotten too serious?

ThidaI bought the seventh Harry Potter book because my husband said "it would be a legacy for my kids." The purchase had its intended effect immediately. My five year old daughter Special K showed an immediate interest in reading the book but I suggested she started reading the first book so she started reading Harry Potter and the Sorcerer's Stone.

My recollection is that the Sorcerer's Stone is light fantasy and the first three Harry Potter books are all light stuff. We'll see how far Special K's interest extends versus her tolerance for the violence and death.

Special K has a high tolerance for fantasy violence and death. She used to play World of Warcraft and now she plays Guild Wars with her dad because the online community aspect is limited only to certain areas. She has a low tolerance for real violence and death.  She draws a sharp distinction between the two. Whoever said that kids don't understand the difference has not met my child.  Classic fairytales are also full of violence and death.  Some children are frightened by them and others are not.

I guess how far we'll let her read will depend on how "real" she thinks Harry Potter and his crew are. I'll ask her after the first book.  So far she says she "doesn't get" Harry Potter so I guess Harry Potter is still a little above her.

Meanwhile I found it hard to get into reading the seventh book. I skipped to the end and read the last few pages. Very bad I know. For a few days it sat there in all its largeness. I know Harry Potter has big problems but I feel like I have several Voldemorts to deal with and I'm on quest to destroy them before they destroy my son's chance at a good life. Okay overly dramatic but isn't that what the series is all about?

Now I've started reading it and I find it interesting but it doesn't have the same 'must it read' it feel the I had for the other books.   Has Harry Potter lost its appeal or am I have gotten too serious? Or is this book just a bit too grim?  What appeals to you about Harry Potter?  Do you think the last book was as good as the rest?  Which is your favorite Harry Potter book?  Why do you read seven books of such huge length?

July 06, 2007

Photo phobia

Thida_2Isn't he cute?  Well okay actually I want to share a different moment with you all but I can't because I'm the worst photo mom ever!

I have photo phobia.  I just don't take enough photos.  I know some moms snap happy away at all events.  Me I watch my kids.  I enjoy the moment.

My first problem was I kept losing the camera.  Well now we've figured out it belongs in the diaper bag so the camera gets taken to most events.

But then I have to remember to take out the camera before the photo event occurs.  During the photo event I can't tear myself away to get the camera. I don't want to miss a single moment!

It's my terrible childhood legacy!  A burden I find hard to overcome. Growing up my parents told me "Wouldn't you rather see the moment than capture it on film?" And yes that is true.  But then my parents learned to take photos when film was expensive and most shots were posed painful affairs.  You stand together awkwardly.  Your mom says "Stand together closer. Now smile."  She presses the button. Oops.  She forgot to wind the film.  So you have to wait a bit more.  You have to hold still.  You feel uncomfortable.   Your smile is very cheesy even when no one says "Cheese" 

In fact pictures taken by my parents still kinda turn out that way except my kids don't really obey.  They run off or look away and they are the worst photos of my kids ever.  There's probably some great aunt in England or Burma who secretly thinks my little darlings are badly behaved (or at least worse than average) or the worst photographic sin ever and I must say this in a hushed whisper...ugly.   I know I know.  All kids are supposed to be cute.  But every so often I look at a photo and my husband says "God that child is ugly!"  I tell him maybe their parents just aren't good photographers because when I look around at actual kids I don't see any ugly ones.

And actually I don't take the posed shot.  I run around digital camera in hand and snap away.  I feel fine knowing that some will be horrible blurred not even recognizable as human images.  I just hit the 'erase' button.  I feel comfortable.  In fact I take pretty good shots if comments from biased friends and family can be believed.  But the problem is getting that camera out.

Well that and then getting the shots out of the camera.  First there's getting the fiddly doo-hickey wire into the camera slot.  My movement disorder really doesn't help in this respect.  Usually it's a honey-do project for my husband and you know how that can delay things. 

Then once honey has put the shots on the computer I have to get them onto the Internet.  Maybe I am too much of a perfectionist or I just don't know the automagical program but I find this also timeconsuming.  Yes my program autosizes the photo but I need to crop the photo and balance the colors.  Well sometimes I don't balance the colors.  But you really don't want to be distracted by how messy my house is but rather gaze upon my gorgeous kids.  Trust me on this one.

As a result and this is a true confession.  The last uploaded shots including this shot above are from July and August of last year. I tell myself I'm doing the world a favor.  I mean you all might go blind from too much cuteness.  But my parents and my mother-in-law don't agree judging by their efforts to share newer photos.  But but.  He hasn't changed that much in a year....from almost two to almost three.   You have to believe me as you have no photographic evidence to the contrary!  And my parents come visit every month so they can see for themselves.

So now I have confessed my terrible photo sins.  Please help?  What should do?  Deduct five billion mothering points in the Pam and Tekla system and never blog again?  Is there some easy remedy for this photo phobia?

July 01, 2007

The night my world was poisoned

Thomas_trains The CPSC web site lists all these trains in this photo included in the recall.

My son cried for over three hours the night I took Skarloey away.

If my son could blog this is what he would write:

{lots of crying}  Mama took Skarloey.   Where Skarloey go?  I want Skarloey.  Skarloey sleeping (He usually sleeps with Skarloey). I want Skarloey.   Where Skarloey go? [repeat ad infinitum]

Then some kind mother trying to help called Costco to see if Costco trains were included in the recall.  The manager on the phone told her they weren't.  So she emailed on this info.   My son was still calling for Skarloey the next day so I let him play with Skarloey supervised for a short time.  I trusted this mom but I didn't trust the company. And really an extra couple hours after months of possible lead exposure probably meant nothing except a little added sanity for me.

Sure enough.  Yesterday on June 27 I received a letter from Costco about the recall.  The letter to Costco was dated June 13.   RC2 has been selling trains with lead based paints for over a year and half.

Now I know that the toys are supposed to be sold to kids over three and my son doesn't actually bite or chew on the toys.  But in actual fact RC2 also sold Lamaze toys with lead based paint to toddlers. 

And while it's true that the primary source of contamination from lead paint is swallowing the lead paint.  And I've never seen my son put the trains in his mouth.  You can also get contamination by handling a chipped train and then not washing hands before eating.  And unfortunately you can also get lead contamination by inhaling or touching (and of course eating) lead dust.  Perhaps unlikely but possibly I could see lead dust being created by being very rough with the toy.  Skarloey has certainly been thrown to the ground many times.  And ironically the reason I know is because I used to rent out an old house that MIGHT have lead paint because of when it was built and by law I had to give the full government disclosure about lead paint.

The insidious thing about all this is that unlike say salmonella which is also bad. You can stop worrying about salmonella after a few days when your child doesn't show any symptoms.  But my son slept with Skaloey every night for months.  I will never know if any number of my son's problems are caused by Skarloey or any other toy. 

That terrible night I wanted to just take every single toy away to protect my kids.  I did not because I told myself there is environmental pollution all around us.  It was not a comforting thought.  And I did not sleep well that night.  And neither did my son.  Meanwhile my husband emails me these articles that say that recalls for toys are at a record high this year and the Bush administration cut the consumer product safety commission by 10 percent.  But what really galls me is no one seems to care. RC2 earlier sold Lamaze toys with lead paint.  The RC2 stock price has not gone down so the company faces no real penalties for my son's night of sorrow or my worry that any painted toy could have lead based paint. "No one was injured or died" RC2 states.  They really have no way of knowing. Lead can take years to show its effects.

RC2 you have poisoned my world.  You can give my son another train but you can never give me back my trust.  Before I met you I had this basic trust that toys and things made for young children were not safe no.  But that any recalls were due to basic design flaws - errors in judgments since it's hard to anticipate how people will use the product in their home.  I actually had one of those infamous Baby Bjorns -- the ones where the infant could fall through the leg openings.  It never particularly bothered me since infants come in all shapes and sizes and while the carrier says handsfree I assume infants are pretty much hands on.  But everyone knows lead based paint is not safe.  Everyone.  This is shoddy manufacturing on a toy that charges a premium price.  If paying a huge premium doesn't buy at least basic safe manufacturing then what does?  This is the second time you have done this.

May 30, 2007

Reading is scary and unregulated

When my daughter turned four she asked begged me to learn to read.  I'm a big reader myself.  I had this inkling that maybe it was kinda young but she was really eager.  We started off kinda haltingly as I tried phonics without success.  Then we figured out she was more of a sight reader.  By the time she turned five she could pick up a picture book and read it. 

She also wanted to learn to write so I got her some writing workbooks.  Through writing she's learning phonics.  I found the workbooks vary a lot in quality.  Some have directions that *I* found hard to understand.  I recommend Spectrum which you can buy at Amazon or Borders.

Now she's a reader.  She reads to herself all the time.  She goes to the library and checks out tons of books.  She really prefers books "with a picture on every page" aka picture books.  As I've discovered the reading level on picture books varies a great deal and she can read all of them.

I've also discovered that I can no longer read my email in front of my daughter.  No I don't get porn or anything but the odd Cialis ad makes it through my spam filter.  Once my daughter walked up to the screen at just the right moment as I was deleting spam.  She asked  "Mommy why are you getting email about pills?"  Long pause while I try to think of a truthful answer that doesn't get into much detail.  "Well honey it's a commercial (we've talked about commercials before)  They think I might want those pills but I really don't need them."   "Oh" she said and walked away.  Now I don't read email in front of her unless I know who it's from and what it's about.

The other day I talked to a librarian about my daughter's sticking to picture books.   I wondered if it was okay.  She said "Sure.  Picture books go all the way from preschool to sixth grade in both reading level and content."  I nodded my head.  The librarian gave me a really serious look.  She said "You need to be careful with these early readers.  They can start reading subject matter that they have no idea how to deal with."  I nodded my head thinking of Cialis.  She looked even more serious.  "You need to read the book before you let her read it." 

I must have looked confused.  I do watch an episode of every show I allow my kids to watch.  I vetoed "Jon and Kate plus Eight" because those parents just snipe at each other constantly.  They just seem so stressed to have eight kids with no other help.  But picture books?  I mean they're just picture books.  Right?

The librarian walked me over to the picture book section.  She gave me this book called The Tin Heart.  The cover had a sweet picture of two girls and a tin heart with two pieces. I skimmed the beginning of the book.  It started out innocently enough.  Two girls in the Civil War.  The father of one made a tin heart and gave each of the girls half of the heart.  It talked a lot about their impending separation.  All sweet and sad.  Just at my daughter's level. 

Then suddenly with no warning in the middle of the book.....runaway slaves.  Now I understand slavery is part of the Civil War and part of our nation's history.  And someday I will explain slaves to my daughter.  And genocide.  And torture.  And Vietnam.  And Guantanamo.  But she's only five.  She's still having trouble with the concept of "I won't be your friend anymore."

To say I was shocked is compare slavery to "I won't be your friend anymore."  I was calling my husband on the phone as soon as I was home alone and babbling incoherently to him.  It's not that I think picture books must cover subject matter appropriate to a five year old.  It's that I expected there to be some warning.  Some indication that the content is other than for preschoolers. 

For example another book called Team Mates had on the cover an African American man in a baseball uniform and a white man in a baseball uniform.  On the back it contained words like "segregation" and the "Negro Baseball Leagues".  I skimmed that book and it talked about segregation and how there were two leagues and such.  Nothing about slavery.  As the sister of a special needs brother my daughter already unfortunately knows that sometimes people are mean to other people just because of the way they look or act.  I told her she could read that one with a grownup.

Anyway I want to thank that librarian for giving me an education.  You can bet that I'll be reading skimming all my daughter's books until I feel she's old enough to deal with any subject matter that might come up.

Even chapter books that feature sweet photos of a fluffy dog are not five-year-old safe.  The back merely said it was about a dog from the pound and some sort of mystery.  Midway through the book another dog dies.  I asked my daughter if she wanted to read a book about a dog that dies. "No" she said firmly.  That book went away too.

I'm also a little angry.  I ask myself why books for kids aren't rated.  I personally find reading and then imagining something to be infinitely more scary than anything I could watch or hear.  I think it's because books are undervalued.

Don't get me wrong.  I think the rating system for visual and aural media is far from perfect.  I still have to watch/hear it before I'll give it to my daughter.  However right there on the cover I have a good idea of what I might be getting into.  I don't have to go halfway through before I realize "not appropriate".

May 28, 2007

My daughter's stardom leaves me frazzled while American Idol makes me feel maternal

Blake_and_jordan A few weeks ago my daughter was proclaimed a star... at her preschool.  The whole thing filled me with anxiety. It combines all the mom things I totally suck at --producing crafts and baked goods.  Last year I at least got to do something I'm good at -- read a story.  But this year my daughter took over that role and read a book to the class.  Yes I'm really proud of her that she can read.  But let's talk about ME!

First and biggest anxiety was to produce a poster of my daughter's life.   I thought the first part will be easy.  I'm tech savvy like many Silimom and so I figure I can upload photos to Costco and get them printed.  I learned the hard way that printing photos yourself sucks up oodles of my time and produces worse photos.

But the Costco website wouldn't take my password and wouldn't email me my password. I felt doomed.  I can't even succeed at the one part I thought I could cover.  I panic and start to write this post.  As I'm writing FINALLY the password arrives.  I felt like a total idiot because my password is completely stupid.  I change my password to something less stupid.  Since I've just publicly announced I have an account at Costco.

The poster turned out to be pretty good.  It helps that my daughter can cut things herself now.  I actually can't cut properly.  Ironically using scissors to cut out shapes is one of the tests for Kindergarten Readiness.  Good thing neither Bryn Mawr nor Haas asked me for this test. :)

But another star moment for my daughter was when she sang in the Assembly at preschool.  She knew all the words and all the motions and she sang her little heart out.   But again I had the anxiety of trying to capture the moment on camera and not doing so well at that either.

Which brings me back to American Idol.  I already blogged about several reasons why the show appeals to me.  But I had forgotten that one big appeal for me is that I feel proud and maternal in a lesser but similar when "my idols" do well.  Maybe one of the reasons I like Sanjaya so much is that he sorta reminds me of my brother at the same age.  And Melinda just seemed so sweet.  Okay I'm not quite old enough to be Melinda's mother unless I had her as a young teen.  Even so.

During those weeks I got to be a proud stage mama with no real consequences and very little of the anxiety.  Yes I'm sad that neither Melinda nor Blake won.  But all I had to do was call a few times on the phone.  I did call for an hour and a half with Blake for the finale.  I knew it was a losing battle.  Jordin just outsang him that night.  But I did what I thought was right.  I'm sure they'll all do fine. 

I suspect I will buy Blake's album to hear what he does with his songs but I doubt I'll go to any top ten Idol's concert.  It would sorta ruin the illusion for me that they're my kids.  Yes I'm the Paula Abdul sort of watcher.  So sue me.  But please don't break my nose.

May 08, 2007

Why I love American Idol: an embodiment of American values

American_idol_mayI'm definitely what we'd call in Silicon Valley a "late adopter" to the whole American Idol thing. This is my first season ever watching any episode of the show. But I guess blogging about it several times and watching every single episode this season makes me a fan now.  I blame Jill for the blogging part.  Her hatred of Sanjaya prompted me to write my first blog about American Idol: Sanjaya makes me laugh.

Okay maybe blogging does not a fan make.  But what makes me a fan is American Idol embodies some American cultural values (both good and bad)

  • Absolute faith in the democratic process. The people decide who wins
  • Glorification of entertainment and the entertainment industry
  • Belief that individuals can make a difference not only by voting but in huge problems like poverty by voting and donating their money - Idol Gives Back
  • Like the idea that "anyone can be president" (some restrictions apply), "anybody can be the Next American Idol(TM)" (some restrictions apply)
  • Entertainment covering entertainment
  • The belief that you can know someone's heart from watching them on tv, even though you have never met them.

And since I'm a fan, I know the show started in the UK, but it has really taken off here.  I had shied away from American Idol for years, because I thought it was only about entertainment, and silly at that. And I still feel we get carefully packaged versions of these singers, but after all that's entertainment. It's the moral values that kept me coming back. And as an import from the UK myself, I think that makes me an American to believe that a show about entertainment can have morals. 

I know Jill and I have our fierce differences about Sanjaya, but actually the week he stopped being entertaining and I stopped voting for him, he got voted off.  Even my 5 year old daughter wouldn't watch him that week. I sorta miss Phil and his big blue soulful eyes, but he's not a good a singer as some of the others. And as for Chris, there's only so much Boy Band a girl can take.

I like the Final Four. I still want Melinda to win. She combines both a wonderful voice and a lot of heart and delivers it week after week. Plus my 2 year old son still screams like a groupie whenever he hears her sing. But Blake comes a close second.  He makes every single song his own. Jordin has a great voice and great potential, but sometimes does seem young and misses in her performances. And LaKisha sometimes just blows me away with those pipes of hers, but other weeks, her heart doesn't seem to be in her songs.

Baby Orange

GoldfishLast Saturday I foolishly agreed to let the kids toss their balls into goldfish bowls to win a goldfish.  I figured they'd never actually get the ball into the bowl so no goldfish.  I was right. The kids missed entirely.  I was wrong. They each got goldfish anyway. 

My son insisted on carrying his home and the fish had a very rough ride. My daughter somehow had two in the same plastic cup and asked Daddy to carry both home.

We put all three in a giant pickle jar with filtered water. My son's fish barely moved.  Within an hour it was floating on its side. My husband touched it lightly with a stick and it rallied briefly and swam a little.  Then it started floating again. My husband tried fish CPR which consists of flowing (filtered) water over the fish.  The fish just lay there.  So we sent it to the big white drain in the sky.   

Within twenty-four hours the other fish started floating and it too went to the big drain. My daughter rewrote history and said both were her brother's.  My son didn't seem to notice that two fish were gone. My daughter named the remaining fish Little Baby Orange.  She insists it's a she.

Baby Orange swam about vigorously and ate as much as she could.  After a week we decided that Baby Orange might make it.  So yesterday we bought Baby Orange stuff:

  • Baby Orange $1
  • 10-gallon tank $9.99
  • gravel $6.99
  • power filter $12.99
  • water conditioner $3.79
  • bacterial supplement $3.79 (adds good bacteria to break down fish wastes)
  • net $1.79
  • ornamental bridge that my son grabbed and broke $11.99
  • Fish pellets $6.99

Having Baby Orange is priceless. I don't know why this little fish makes me happy.  But I feel like I'm getting to know...a feeder fish.  She was clearly so excited to get into her new tank that she kept swimming against the bag. 

Over twenty years ago my sister brought home Edward a feeder goldfish from a fair. Edward is huge and too big for his tank.  His eyes are popped out and he can't see.  However he still lives on at my parents' house.

I'm a little concerned about our family's ability to feed a creature that doesn't ask for food.  We have killed many plants.  But unlike a plant, Baby Orange is very active.  She swims around a lot.  I think hope that's good.  I do like watching her.  Her resilient spirit reminds me of my son's.   Both have survived against the odds.  I also find the soft flow of the pump strangely soothing. 

Keeping a feeder goldfish won at a fair is an act of faith.  I make no predictions for Baby Orange's future, but I'm enjoying her while she's here.

Crossposted to Water Owl's Movements

May 01, 2007

Blogging Against Disabilism Day: Are you or have you ever been insane?

Bad_2A parent on my Special needs list sent a story about Depression in Mothers with Autism.  Perhaps some of these mothers are truly depressed.  But depression would make it very difficult to care for a child with autism.  Depression is a mental illness -- an incorrect biochemical neurological response to stresses in the environment. 

More than once, a friend who suffers from depression has said I'm depressed about my special needs son.  I am not...anymore.  I get sad sometimes.  That is different.  My life is stressful by any objective measure. And I think it is reasonable to be upset when you are the parent of a child has a debilitating disability, or deal with one yourself.

Unfortunately I've also been medically depressed twice in my life.  I had post-partum depression after the birth of both my kids. 

I can't speak for anyone else, but depression feels different from grief or sadness. When I was depressed, I actually felt very little except hopeless. My post-partum depression was actually worse the first time after my healthy daughter was born and lasted several months.  I felt I was the worst mother ever, not only disabled, but also just completely incompetent. At any moment, the state would discover I was "an unfit mother" and take my daughter away.  If I did something right, it was only because of some book or someone else.  If I did something wrong, it was the end of the world.  I can see how for a few mothers who go for a long time without help, the end of the world might mean killing their own children.  They are insane, but post-partum depression is a form of mental illness.

With my son, who was born so sick, being depressed meant feeling he was going to die (could be true) and I had killed him through my inaction (insane). Unlike with my daughter my situation was so dire that it was obvious I needed help.

I think this is the first time I have written this in public.  The day my son was born, I did seriously consider dying. Not actual suicide.  Just giving up. My son's birth had been very difficult and I was incredibly weak, so I felt I could just let go.  But within hours after my son was born, a nurse whose baby had died came to talk to me. She helped me realized that a) I might just survive the death of my son and b) I still had a daughter who needed me.  She didn't break the insanity --the feeling that I was completely to blame for everything wrong with my son took a while to fade. She did get me to promise to talk.  She told me I was not a bad person to feel the way I did.  That I didn't need to be ashamed.  I started talking with her and then my husband, and eventually when I had time, I talked to a therapist.  Day by day, issue by issue, I started to feel less to blame and eventually I could separate what was under my control, and what wasn't.

I still feel grief or sad when my son is very sick, or something else bad happens like my son gets denied a service or he or I suffers a setback. But depressed, no.  I don't just sit there and stare at a wall.  I cry and then I do something. 

My reactions are sane as can be expected, given insane circumstances.  My mothering body was designed to rally to protect my children from predators and try to treat them when they're sick for a few days.  It doesn't cope terribly well with continued prolonged almost dying (fortunately that phase seems behind us), a infancy that lasted a year and some aspects of babyhood that are still ongoing at 2.5 years old.  This is a wonderful and dreadful aspect of modern medicine.  I have to laugh a little at those who claim the body can heal itself from all things.  Left to his own device, or heck even left in a third world country, my son would have died at birth.  Terribly sad, some might say depressing in the nonmedical sense, but it is the truth.  Clinical depression is about untruth.

And no, I don't always feel things will get better.   Sometimes this is in fact a rational response.  The doctors tell me some things will never get better.  Depending on the day, I believe them or don't. But even in my darkest days, I feel small fleeting moments of happiness.  I walk outside in the sunshine.  My family hugs me.  I feel love.  I get frustrated.  Grief, even grief that lasts for a long time allows for fleeting moments of other feelings. Grief is harder than not feeling at all and inaction which characterized depression for me. I struggle every day to try to make things better.

And here's where I find our current approach to mental illness to be so twisted.  Our current approach is  focused on if people "pose a threat to self or others."  That is our requirement for locking people up.  That makes sense to me.  But how about the majority who are mentally ill, but not a threat i.e. need outpatient therapy?  The first time when my post-partum depression was worse and lasted a lot longer, I posed no threat to anyone.  Months went by and I suffered in silence.

A lot of hand wringing over Vtech is about how Cho didn't get help.  He did get help.  He was seen by an outpatient facility who let him go "because he didn't pose a threat to others."

Sadly I think the current atmosphere makes it LESS likely, folks will get help for mental illness.  People are watched closely for signs that they might "be a threat."   Meanwhile outpatient mental health services are cut all the time.  Most medical insurance drastically limit mental health benefits.

Unfortunately it's much harder to tell if someone is a threat than if someone is mentally ill.  Strangely as my psychiatrist dad will tell you, becoming a mass murderer requires a certain amount of sanity, Cho did a lot of preplanning.  He even sent off a tape before his second murder spree.  In our society, premeditation means that the person is sane to stand trial.  It requires an utter disregard of other people's lives to the point where you think you have the right to kill them.  I'm not sure if that is sane or not, and it may well be associated with other forms of insanity, but it is not depression or schizophrenia or any of the other common forms of mental illness.

Yes, a few moms with post-partum depression actually kill their own kids.  More likely are the moms who have fleeting thoughts about killing their own kids along with themselves and then feel awful about it, and the spiral down continues.  And I know a call to watch out for moms with post-partum depression, because they might kill their kids would be so effective at getting moms to speak up about it. NOT.

Sadly the usual face of mental illness is not Cho.  The face of mental illness is a homeless person talking to the air.  Many homeless people have mental illnesses.  A person who won't get out of bed for days because "there is no point".  A mom who says "I can't love my baby."  A mom who feels "I am the world's worst mother" and not for a moment as we all do sometimes, but for days and weeks.  A person who feels pleasure in nothing.  A person who honestly believes that there are strange faces peering out at from doorknobs and laughing.  A person who feels that everyone is plotting against them.  A person who is too scared of open spaces to leave the house.  With the current stigma against mental illness, many are too ashamed to admit they have a problem until things get very bad indeed.

I have only experienced mental illness for a brief time and I was ashamed about it.  I still feel a bit embarrassed to admit that I ever had this disability.  And yet having post-partum depression was no more my fault than my movement disorder is.  Both involve brain issues.  With post-partum depression my brain just got scrambled due to hormones. 

For me, a large part of that shame comes from "I'm not one of those who pose a threat." It's like admitting to having leftist tendencies while the McCarthy trials against Communism were going on. The huge association between mental illness and "being a threat".  I would like to say that I feel this is totally and utterly wrong for most people and especially for those who receive the proper treatment.  I'm not a doctor, but from what I read, it does not match the current medical understanding of mental illness either.

But yes, twice I've been truly insane.  My strong beliefs about the world, my children, and myself were in direct opposition to reality.  My insanity was only temporary, and I'm so grateful.  Are you or have you ever been insane too?

April 30, 2007

Blogging against Disability Discrimination Day May 1

I hope you'll join me on May 1st (tomorrow) for BLOGGING AGAINST DISABLISM DAY

BadEveryone is welcome to join in with Blogging Against Disablism day, disabled and non-disabled, as long as you wish to blog against the discrimination that disabled people experience.

.... pass along!

April 27, 2007

The gifts of Autism Awareness month and those who live with autism

Autism Awareness month ribbon

To the people and parents living with autism, thank you for the gifts you've given me and my son! 

My son and I don't have autism.   But we're part of the special community lovingly called special needs.  Your battles have give me several gifts.  And for Autism Awareness month, I wanted to thank you and all those who have fought alongside me.

1. Thank you for showing the world that just because you move or act differently from most of the world, you are still a human being with intelligence and feelings. 

I have a movement disorder.  When I was a young child, I was diagnosed as mentally retarded by top neurologists.  My parents knew otherwise.  Top neurologists told them "You're just overachievers who can't accept your child as she is."  Ironically my mom grew up with a sister who had Down Syndrome.  So she knew a face of mental retardation. And gazing into my eyes, she knew that I was smart and told me so.

At school, kids regularly called me "stupid" and "retard" and "spastic". Only two teachers told me I was smart.  I knew I was smart, but I also knew I perceived the world differently.  It was not until I was 16 that a neurologist said "Of course you're intelligent.  You have a movement disorder (a new exciting field at the time)."  It wasn't until high school that two kids told me I was smart and treated me that way. My dad just said "Wait until college."  Finally in college, everyone treated me as intelligent.  It was a novel experience.

But it's a different world for my son.  Lying in the NICU, extremely sick, I knew my son was intelligent and warm.  He made a real effort to gaze into my eyes, though I could tell he was a huge effort for him to focus through the extreme pain.  The day he was born, his nurse said "He's so engaging.  He's a smart one."  From that day, various nurses, doctors and therapists have all said similar things.  He has multiple delays including speech, gross motor and fine motor. 

He has come a long way, but no, he does not move or talk like a typical child.  He also wears a bright red wrist brace and his left arm usually hangs stiff at an awkward angle.  But he lives in a different world than I did. I'm amazed by my son's confidence and ability to engage people.  Yesterday in the park, he sat with two boys prolly 8 and 10 and played in the sand right next to them.  Everyone seemed comfortable.  That was something I never had.  Thank you boys, and thank you parents of those boys.  And thanks to all those who worked so hard to change the world to make this possible.

2.  Thank for you for teaching me and the rest of the world how to better talk about disabilities.  Thanks for standing up loud and proud.  My parents came from the old school where we didn't talk about my disability.  My parents still don't use that word.  They call it my "shake" (I don't shake).  I know it comes from a place of love.  A place where admitting disability means shame.  A place where they want me to live a normal a life as possible.  I knew this and I never told my parents about the teasing.  It was a pain I kept to myself.  And I have greatly exceeded the doctors' predictions, so my parents did many things right.  I know if they were parenting today, they would do things differently.  They treat my son differently.  We live in a different world.

3.  Thank for pointing out that there is both joy and pain in having a child with life-long disabilities.  You'd think that I'd have an easier time of it having an unrelated disability.  But I struggle sometimes to tell the truth.  I struggle because like my parents, I want so much for folks to see the joy, the intelligence, the incredible resilience of my son.  He has taught me so much.  But he also has his challenges.  I want to say like any other child, because every child has challenges.  But his challenges loom larger and are more serious than most children.

4. Thank you for sharing.  Thanks to you, I have learned so many things about myself and my son.  I have learned about a lot different resources in Silicon Valley.  Thanks to you, my son has lots of therapy that has drastically improved his life.  I take therapeutic riding which has improved my balance and wrist movement.  I'm also on the waiting list for a service dog. I have learned about the world of sensory issues which many kids on the autism spectrum deal with as well as my son and me. 

5. Thank you for the gift of hope and showing me a path to greater freedom.  I've had hope for my son since the day he was born.  But before I met you, I thought I was the way I was.  I could not change in my late thirties.  My wrists were degenerating every day.   I kept spraining my ankle every year. 

6.  Thanks for teaching me a whole new vocabulary and different ways of perceiving the world. I learned these words for my son, but they have actually helped me a lot more.  Thanks to you, I've been able to use the right words to talk about my issues.  Before I stumbled around literally and figuratively and therapists said "We can't help you."  Now they offer me exercises and suggestions.  I have noticed a small difference.  I jerk a little less.  I hurt myself less by thwacking my hand on things.  I stumble less.  I have not fallen down in a month.  It's a start to a long journey.  I'm so grateful that I know I can change.  And I'm still learning about myself.  Thank you so much.

April 23, 2007

Assembly bill 1634 neuters the hopes and dreams of those with disabilities

Dogs_and_catsTomorrow the California State Assembly votes on Assembly Bill 1634 aka California Healthy Pets Act.  Its goals are laudable i.e control the cat and dog overpopulation. The effect on the people with disabilities is to neuter their hopes and dreams of owning a cat or dog.

It's extremely ironic that this bill is being voted on during Autism Awareness month.  Many cats and assistance dogs work with kids and adults on the autism spectrum to help them understand the world better and cope with the stresses of having a mind that works differently than most people. 

Unfortunately as written the bill could severely negatively impact the breeding programs of assistance dogs, because it requires spaying/neutering at 4 months old, or an intact permit.

Two of the largest assistance dog organizations in the country are based in California including Canine Companions for Independence (CCI) in San Rafael.  Both are registered nonprofits that provide dogs to people with disabilities free of charge.  These dogs change people's lives.

It's extremely difficult to find dogs with the right temperament to become an assistance dog.  So many service dog organizations breed their own dogs. Whether a dog is fit to be a service dog or a breeder of service dogs is not something that can be determined at 4 months of age.  The CCI president has written a letter opposing the bill.

The bill had been amended to try to address this and other problems
, but it still requires the "owner" to have an intact permit for each dog that must be renewed annually.    CCI had 690 puppies this year.  So even if the cost of each intact permit fee was modest, for CCI to protect their breeding program could be prohibitively expensive.    

Also to even have an intact permit requires the dog being "in training" to be a service dog.  For most assistance dog organizations including CCI, puppy raisers raise the dog in their own home until the dog is of age to be trained usually about 18 months.  Yes the puppy raisers train the dog in basic commands, but the dog is not "in training". 

In his letter, the president of CCI states that CCI did a study of sterilization of dogs before they reach adulthood and found that it caused "significant increases" in behavioral and medical failure rates. And that the "research has been repeated elsewhere with the same results." 

Other studies on cats and dogs in typical households show no effect of early spaying/neutering.  As a person with disabilities who has a son with unrelated disabilities, I think the studies ignored those with disabilities. 

I have had two pairs of cats from three separate litters who all were spayed/neutered at 6 weeks of age.  That was the requirement for them to leave the shelter.  I thought it was too young, but I didn't feel I had much choice if I wanted to do the right thing and get cats from a shelter. I picked all my cats because I thought I could train them to cope with my movement disorder.  I am not a "trainer" but I do understand cats.  And none of my cats have ever bitten or scratched me on purpose.

Unfortunately my first two cats died at age five.  One was a runt and died of kidney failure.  The other died of a heart attack.  Both needed more time to develop before being neutered.  I got two other cats.  I thought these medical problems were just flukes and agreed to have them early spayed/neutered again as kittens at a different shelter.  But just last year our female cat developed severe behavioral issues in response to hyperthyroidism, and the stress of living with a medically needy child.  I can't help the stress, but I suspect the hyperthyroidism was probably due to being spayed too young. 

I don't think people understand how a pet with any kind of medical or temperament problem can find it very difficult to live with a person with disabilities.  And how having that little bit of extra time to reach maturity before being spayed/neutered can make a huge difference.  A screaming infant is one thing, but a toddler who screams in pain, because his g-tube site is inflamed and cleaning it really hurts is a whole other level of stress. 

Our other cat hides a lot and comes out when things are a bit calmer. He is an enormous cat at 15 pounds (and he's not fat).  He was the biggest cat in his litter so I think the early neutering affected his development less.

I'm on the waiting list for a service dog from CCI.  And I think we'll get a dog before the bill can affect me personally.  But even assuming our cats develop no other other health problems, in the next five to ten years, our cats will die of old age.  And our son will still be living with us.

Perhaps a cat in a typical household does just fine being "fixed" that early.   But I don't live in a typical household.  And I can't take that sort of risk again. Three out of four with significant problems is just very poor odds. It's clear to me I must wait to neuter/spay until the cat is fully mature, or not have a cat.  The thought of not being able to get another cat makes me very sad.  But that is what this bill will mean to me. has many testimonials from people with dogs who would be negatively impacted by this bill.

I think it's sad that the writers of this bill did not consult with appropriate experts in the field before writing this poorly crafted bill. 

I urge you to call your Assemblyperson and oppose the bill.

April 12, 2007

Oh Sanjaya Sanjaya

Sanjaya_sanjaya_2 This week was Latin week on American Idol and everyone disappointed me, except Jordin and Blake... and Sanjaya. Sorry, Jill. :) Latin is surprisingly hard to perform well. You need to have dance moves, sex appeal and as Jennifer Lopez said "make us feel the song."

Sanjaya with your "evil twin goatee", your heartfelt rendition of "Besame Mucho" wasn't the best performance of the night, but you came third. You actually sang in Spanish correctly and even better showed you could sing.  I know you can sing.  Even Simon had to admit, "You weren't horrible."

Continue reading "Oh Sanjaya Sanjaya" »

April 11, 2007

Mini-vain and ashamed

Minivan_thida_postThis is my dream car.  Only available in Japan.  The Toyota Estima minivan which first came out in 2001 and has been redesigned this year. I'm not ashamed to say it.  I am ashamed of how I got here.

When I was pregnant with our first child, we bought a Passat.  My husband tried to get me to buy a minivan, but I categorically refused.  I had this "eww!" reaction. It's funny, because I'm not really a car person.  I want quality and reliability. Stylishness and image are not really on my list. Or so I thought.

My previous car was a Honda Civic hatchback. When I used to work in middle management at an Internet company, the people that worked for me used to rib me about my car. I occasionally thought "maybe I should get a more 'managerial car'." but I never did. I count on my Civic to always work.  It fits five people and tons of stuff.  The only thing that makes it less kid friendly than the Passat is it has just two doors. So you have to push down the seats to get at the kids. Plus the doors are pretty heavy.

But somehow a minivan symbolized something awful to me back then. I've always wanted to be a mom.  But moms in minivans are a shamed group.

After child #2 , it became clear that the Passat was in fact antisocial, and very environmentally unfriendly. With today's car seats, it fits just our family of four...and a very skinny person who can squeeze between two car seats. So far we only know two people that can fit. But not another car seat. We don't want another child of our own. However as child #1 heads off to kindergarten this fall, we do want another child in our car, so we can carpool.  So later this year, we'll buy a minivan, a Toyota Sienna

I feel ashamed of the incredible waste. My Civic is 11 years old, and my husband still drives it to work everyday. But we'll give up our Passat after just six years. I know some folks buy a new car every two years, but the Civic is the first car I bought new and only the second I've ever owned.

I really wish the hybrid minivan was here already, so at least I could say that I was holding out for a hybrid minivan.

A hybrid SUV is pretty environmentally unfriendly too. They're actually lower MPG than say a Prius and hold as many people, though I do admit they hold more gear.

But even so the environmental costs of buying a new car usually far outweigh keeping your old one.  I feel ashamed that I listened to marketing and media instead of the common sense of my husband.

I share my shame with you in the hopes that someone reading this will learn from me as an example of what not to do.

But I'm also annoyed that every car maker under the sun is coming out with hybrid SUVs, but no minvans. Come on automakers. Surely, there's just as big if not bigger untapped market of environmentally conscious minivan mamas? Or is it just a weird artifact of the Bay Area and everyone else in the US is so minishamed that they'd rather buy an SUV?

April 10, 2007

Mommy Swine

SwineAn article entitled "Pearls before Breakfast" is bound to depict someone as swine. In this case, the swine are the people who didn't stop to listen to Joshua Bell busking in a Washington DC subway. The nauseatingly pretentious tone is supposed to show that people don't recognize beauty. The writer Gene asks, "Do you have time for beauty? Shouldn't you? What's the moral mathematics of the moment?"

No offense to Mr. Bell, who is a genius violinist.  And yes he certainly sounded better than the average busker. However the acoustics were awful. Gene disagrees and says "The acoustics proved surprisingly kind." I agree with him that "[the subway layout] caught the sound and bounced it back round and resonant." To me, it bounced the sound around and around like a bad reverb. The notes ran over one another.

The acoustics of music matters to me as well the player and the instrument. If that makes me swine, so be it. 

Also to answer his question, "Do I have time for beauty?" Yes, I have a lot more time than I used to being a SAHM and less. I'm no longer corporate swine. Though I do have to rush sometimes to get my son to his various appointments and my daughter to preschool, but otherwise yes, I have time to linger dawdle when I walk from point A to point B.wander over to where my kids want to go. I have no choice. I herd swine walk with young children.

My kids aged 4 and 2 both make our walk to the library, a multi-sensory journey. They notice and comment on every flower, pebbles, the beehives.  Every difference is noted and stared at, even once a dead rat. Okay, the dead rat was really gross.  On my own, I wouldn't have looked at it so closely as I did with my daughter who was both repulsed and fascinated by its squashed dessication. And it did have a kind of stark beauty.

My children have no idea what "moral mathematics of the moment" means. And I don't know if faced with Joshua Bell in a confined space, we would have hurried on -- "Too loud!" my son might have exclaimed. Or if the video distorted the experience, and we would have found Joshua's playing beautiful even in the subway. If so, we'd have stopped and I'd have had time to notice, "Hey that's Joshua Bell!" disguised both musically and physically.

Either way, as moms, I think most of us recognize there is no standard of beauty we all can agree on. My swine son finds his toy trains a constant source of joy and beauty, as well as his dayglo orange pants. My swine daughter loves her garish sparkly shoes decorated with Disney princesses.

Ironically one of my daughter's favorite games is to address me as "Mommy [insert name of animal here]."  I must respond with "Daughter [animal].  So calling her "daughter swine" would be great to her.

I think they're the most beautiful fascinating children in the world. I pity the mom who doesn't find constant joy and beauty in their own children in between bouts of finding them utter pains.  Even with all his medical issues and multiple delays, I'd still choose my son, quickly won over by his sweet cry of "Mummy!" and the way he laughs and laughs until he's totally breathless.

But no, I personally don't find all children are beautiful.  As an ideal, yes, and certainly I tend to find most children cute. Yet though it may be unPC, I think a few children are just plain ugly and a few more are constantly annoying. And I honestly and sincerely hope that their parents think otherwise.   

I also hope that if Joshua Bell's mom was in the subway, she found her son's performance utterly entrancing.

Crossposted to Thida's blog Water Owl's Movements.

April 06, 2007

Mommy wars miss the point

I find this whole SAHM v.s. working mom "debate" aka mommy wars painful and dumb.  It causes me pain, because I don't have a choice. You may be thinking she means "I need the money so I have to work."  No, I mean I have to stay at home because we can't afford financially, or in stress load, or time needed for childcare for me to work, at least for now.  The debate assumes all children have similar needs.  They do not.

We're lucky that despite our challenges, my husband earns enough to keep us here in Silicon Valley.   I used to earn a nice wage as middle management in an Internet company. I did choose to stay at home once I got pregnant.  That was my "choice".  I was in a high stress job, but I could have taken a lower stress job.  My typical daughter could have gone into daycare after she was 6 weeks old.  Many moms do this.  I know there's high quality day care here for typical kids. 

Then my special needs son was born.  Daycare was not an option for my son for his first 18 months.  He couldn't be exposed to other kids.  He has a complicated medical history and for months needed medication several times a day, numerous doctor's appointments and therapy appointments. I looked into what it would cost for what would be essentially a full-time nurse.  It would be about a wash with my salary.  And that doesn't include all the time I spend coordinating his appointments and getting various agencies to give him services.

My extended family either works full-time or has health problems. So that left me or my husband staying at home.  I was already not working, so I continued to stay home.  What would have done if I was a single mom you ask?  Probably gone on welfare.  Ahh, welfare moms.  Another maligned group.

And here's why I think it's dumb.  As a feminist, I believe that most women make the decision to work or stay at home in a way that makes sense for their families. 

Some say that SAHM childcare is inherently superior to any other type of childcare.  Studies come out pro and con.  I think they also miss the point.  No one loves my children more than me and my family. However I sent my typical daughter off to preschool and in September she'll go to Kindergarten.  So clearly I believe that my daughter needs other forms of childcare than just me.  If your child goes to school, you don't actually believe that SAHM childcare is inherently superior 24x7.  You have other agendas.  I know some believe SAHM are so superior that they homeschool.  That's another debate.

I think most women recognize there are financial penalties to not working.  But money isn't everything.  I understand needing to work, because your family needs the money.

But then there's the argument as argued in various books including Feminine Mistake that women should work so they "aren't financially dependent on their husband in case they get divorced" I know the divorce rate is high.  But I think that husbands and wives should share financial responsibilities regardless of who works and who doesn't, and especially if you have kids.   Legally in California, if you're married, you're financially a single entity unless you take specific steps not to be.  And once you're listed on the birth certificate, you're financially responsible for your children.  Yes, there are deadbeat dads, but most were not married to the mothers of their children in the first place-- media hysteria to the contrary.  And if you're worried that the father of your children will shirk his financial responsibilities to your children if you separate, then I think it's a bad idea to have children with him, but if you've already had kids with him, yes, absolutely you should work.

I can understand wanting to work, because either work satisfies you, or because not working affects your self-esteem, because not earning money and"just" being a mommy is still undervalued and/or because not earning money just worries you.  I sometimes long to go back to work for these reasons.  But these are not really financial considerations.  It's how society views motherhood and work.

What gets lost in the so-called "mommy wars" is that most workplace environments are very unfamily friendly.  This affects women disproportionately more than men, because women are still expected to be the primary caregivers.  Therefore to me, it's a feminist issue.  People forget history and assume that a) women working started with the industrial revolution and therefore b) working was always family unfriendly.

It's funny because the book The Feminine Mistake outlines a life of extreme privilege of non-working moms in the past.  In actuality, the idea of a "working mom" v.s. a "stay-at-home mom" is a relatively new concept for most women.  Before WWII, most moms worked in the US.  And in nonWestern countries, most moms still work.  Not working is only for the privileged few.  Moms work on the land, in shops or stalls, or at home producing income for their families.  Some work in factories or in other corporate entities.  They either bring their kids with them, or depend on extended family for childcare.

Here in the US, the extended family is gone for many families, and most workplaces do not allow you to bring your kids to work, or provide quality childcare.  I think this is the real issue for moms.  And one worth fighting about.  Not whether moms choose between a rock and a hard place.

April 04, 2007

What a difference a year makes

A year ago today I was not writing for the Silicon Valley Moms blog.  Instead I was blogging on my personal blog about my son's upcoming radiation therapy.  Three rounds of massive amounts of steroids, chemo and Interferon had not been enough.  His GI system was failing.  He wasn't growing.  It was time to move to the next step.

Right about now we were sitting in the doctor's office dreading and hoping.  At his previous appointment, his doctor urged us to try and postpone radiation therapy by two to three weeks.  His tumor wasn't small enough yet, but it might be.   

In my dreams, my son would avoid being irradiated.  But even postponing seemed impossible.  My son had been measured and fitted for a custom cast that would hold him in the exact position for the precise shooting of radiation rays.  If we pushed it back too far, they would have to make another cast.

When we got home, we got voice mail that his radiation had just gotten pushed back by three weeks, because of scheduling issues.  The maximum time before a new body cast.

A year ago today, radiation therapy was still up in the air.  I cried after his GI appointment, because he was still vomiting every single day and food was just sitting in his stomach undigested.  This was something I allowed myself to cry about, because radiation therapy was just too big.

Two days before the new radiation therapy deadline, his doctor said his tumor was small enough and radiation therapy was canceled.

In June, my son almost died from sepsis.  An everyday germ had gotten through the IV line to his heart and infected his blood stream.  He had bouts of septic shock.  He experienced it once at home before I took him to the doctors.  He turned blue and stopped breathing.  I was incredibly lucky that I was able to  tickle him and get him breathing again.  At the hospital the monitors beeped like crazy.  Loud blaring of "code blue" on the speaker.  Doctors and nurses would rush in filling the room.  Lots of equipment and bustle. I watched and prayed.  He'd come back again, all pink and smiling.  But it was clear the cure was killing him.  As the bacteria died it dumped tons of toxins into his bloodstream.

Then in walked an unlikely hero -- a young intern on her first couple of days on the job.  She stared at us like a deer caught in the headlights.  Her eyes got even bigger as she saw his enormous file as large as telephone book.  I  watched her face sink.  She said "I can't talk now." in a very flustered voice.  I could smell her fear.  Yet she saved his life by suggesting an alternative new antibiotic to the attending doctor.  I will never forget her and I doubt she'll forget my son.  A few months later, I saw her walking along with some fellow interns.  She asked about my son and sounded like a professional doctor kind caring and confident.  I felt as proud of her as if I had taught her.

If this all seems unreal to you, it is unreal to me now.  We have passed through that stage. At least several months have gone by without hospitalization.  Sure my son has plenty of medical issues, but they are more chronic and a lot less scary.  He still receives 500 calories a night through a tube in his stomach, but he's growing and walking and talking.  Save for his left arm that twists at weird angles and can't do a whole lot, and a tube in his abdomen, he looks like an extra small two-year old.

So why am I telling you this story?  Well three reasons.  One is to show the incredible resiliency of children.  I can't think of a worse crime than deliberately poisoning your child.  Okay, it was in the name of saving his life, but the drugs caused most of his medical problems.   But I've found repeating "Children are resilient.  Children are resilient." often helps me then and now when I feel like a terrible mom.

Another reason is to show that I've found on this journey that people help you in the most unexpected ways.

And finally I'm writing about it here.  A year ago, I just couldn't have.  Blogging about the medical drama of my son in a public forum didn't feel safe.  This is a special place.  I started out slowly in August with Where Everybody Knows Your Name about why I liked being a "frequent flyer" at Lucile Packard Children's Hospital.  I continued with Top Ten Signs of Your Kids Live in Silicon Valley, continued with Blogging The Tumor about my personal challenges of parenting a child with many medical needs, and stories about my son and my typical daughter.   I also wrote a few political blogs including the politics of health care

I sometimes received nudging emails from Jill, so I have definitely not been the most regular contributor.  My posts tend to wax and wane with my son.  His progress has been like that of a startup with its imminent failures and shaky triumphs.  I suppose I should have been prepared for this as I met my husband while his startup was in code blue.   

But again, Jill and blogging a counterpoint to her dislike of Sanjaya  has forced me to post again.  Well okay, I don't like Sanjaya that much.  But things are going better.  Still I don't want to jinx things too much and to those who don't know me, it might sound weird to be all proud that my son is finally on the very bottom of the height charts.  But I am.  It's taken a lot of hard work to get there.

This week is also my five year anniversary of blogging on Livejournal.  I remember a fellow blogger at one of our Silicon Valley blogger get-togethers telling me quite earnestly that Livejournal was a blogger ghetto.  Well maybe I'm a ghetto kid, but I've found a sense of community there and here.

I've met some amazing folks through blogging and reconnected with others.  Thank you for reading and writing.  You've helped more than I can explain.

April 03, 2007

My like for Sanjaya goes on and on

Don't worry, Jill and Stephania, I won't burst into song about Sanjaya.  But I found his rendition of "Dancing Cheek to Cheek" featuring a dance with Paula Abdul utterly charming.

But my favorite is still Melinda Dolittle.  Melinda, you make my heart sing.  “I’ve Got Rhythm” is a hard song to sing.  It's also hard to make it sound fresh and soulful.  But  Melinda, as usual "Who could ask for anything more?"  My 2.5 year old son went totally wild about Melinda.  He was screaming at the top of his lungs and bouncing with glee once she stopped singing.  He loves songs and I think my little guy has his first crush on a singer.

Blake Lewis
sang "Mac the Knife."  I'm sorry Blake, but the song wasn't scary to me.  It has a peppy beat, but it's about terrible things.  You're supposed to sound like a gangster.  You sounded cute.  You still have a problem interpreting the lyrics sometimes.  Even so, I voted for you again.  I loved the scatting and the dance moves.

I disagreed with the judges grading of Phil Stacey's "Night and Day".  Yeah he started off shaky, but as Randy would say "I was feeling it, dawg."  Something about those big blue eyes of his.  Though when he said "I was looking at my wife the whole time."  My husband asked "Wasn't he the one that missed the birth of his own daughter to audition?"  Yup.  So maybe that's why none of the judges felt it.

Again I disagreed with the judges on Chris Richardson's styling of "Don't Get Around Much Anymore” a song by Duke Ellington. They called it his best performance to date. First of all he sang out of tune in the first part.  In my eyes, a forgivable sin.  Bob Dylan can't carry a tune and IMO Madonna couldn't sing for the first part of her career. But what I couldn't get past was that the song starts out upbeat and happy and then tells the story of a guy who can't get out anymore because of love.  It has two distinct moods.  Chris sounded the same in both parts.   My husband said he also moved around a lot, which he found distracting.    It's a quieter song, so this doesn't work particularly well.

Jordin Sparks
bored me this week.  The judges raved about her.  Sure she can sing.  But I got no feeling from it.  I can never escape the feeling I'm watching a carefully orchestrated performance.  I know they're all orchestrated literally and figuratively, but the best of the lot make me feel they're telling me a story in song.

Gina Glocksen was the total opposite singing “Smile” a song written by Charlie Chaplin. She was as Randy would say "a little pitchy" in spots, but man I felt that song.  She sang it like it meant something personal to her.  She made it contemporary.  She took a risk not belting it out in her usual rocker style.   I was really sad she got voted off this week.

Haley wore a very short green dress showing lots of cleavage.  All I can write is what Simon said "You've got great legs."  Her performance was all wrong.  As Tony Bennett heavily implied, she misunderstood the song "Ain't Misbehavin'  It's about a fomer bad girl gone good due to love.  She was all bad girl.

Last but not least, LaKisha belted out "Stormy Weather."  Vocals excellent as always.  Sultry, hell yes.  Making me feel sad that her lover is gone.  No.  She got my vote, but it was mostly because I wanted to do my part to help her stay around another week.

March 31, 2007

Here by the sand, nothing goes as planned

Sand Although this picture makes it look easy and fun, my little guy had to be big enough and strong enough to get in and out of our own turtle sandbox on his own.  Ours is harder, because it's purple not green. Well okay, it's a bit bigger.  And "Sand not included" is in fact a big warning."

We had about half a bag of sand from our previous failed attempt at sandbox before my son was born. The failure involved no cover and cats. The reader can guess why.

This weekend, we put sand in the purple turtle sandbox.  Both my kids immediately climbed inside and started playing. Never mind they kept scraping the bottom of the sandbox. We had a hard time persuading them to leave to get more sand. No sand in the two stores we went to.

Over the next two days, I called several stores. "Not the right season" they tell me. Why do stores around here act like the bay area has seasons?

Finally after waiting on hold for 10 minutes, Home Despot says "We have play sand.  Lots of it." as every store should have sand. Of course they should. I call my husband and tell him.  He says "it's not exactly on my way home."  I tell him my travails. So he buys two bags of sand and puts it in the sandbox.

We have more sand, and it now covers the entire bottom, but it's still not quite enough sand for true digging.  My daughter shows little interest in deep digging.  She's all about making me "ice cream." For my son and his big plastic digger, it's only a matter of time before he's scraping the bottom again.

It's a strange metaphor for my life. Getting more sand seems like it should be so easy, but it becomes strangely hard. However, my kids seem satisfied with whatever sand we already have.  Both kids play in the sandbox every day.

March 29, 2007

Sanjaya makes me laugh

SanjayaI have a confession to make.  I like Sanjaya of American Idol.  No, I don't mean I like him in a fan girl way.  In a cutie boy way.  Look at that sweet smile.  Every week he does something different to make me laugh.  I think he knows he's the class clown.  That's fine with me.  He always seems to have a good time.  Some of the other contestants get up there and they don't seem to enjoy themselves.  I don't enjoy watching them.

Maybe it's because, thanks to my Windows Media Center, I can watch Sanjaya with my 4-year-old daughter.  She loves Sanjaya who's "a little bit funny and a little bit embarrassing."

I watch American Idol to be entertained.  Simon says "It's a vocal competition." I disagree.  It's an entertainment competition.  I buy a record or watch a concert to be entertained and/or to be emotionally moved.  The best pop vocalists do both.  Right now Sanjaya provides me consistent entertainment.  As long as he continue to do so, I'll vote for him.

I also have to confess it's my first season of American Idol.  Started by my daughter, I guess.  And I don't take it too seriously.  Yes, supposedly people's vocal careers are on the line, but like any reality show, it's all packaged.  They show you what they want you to see.

But here are my short and rather flip comments about the other contestants

My favorite to win is Melinda Dolittle.   I always vote for her faithfully when the phones aren't too busy.  I was sad to see the other former backup singer Brandon go.  She has a lot of soul and a lot of fun.  I love her surprise every single time the judges say good things about her.  Either she's a good actress or she's just that modest and sweet.  Either way it works for me.

LaKisha Jones is another judges' favorite, but while she always delivers vocally, sometimes it seems her heart isn't in her song.  I felt this the last two weeks and I didn't vote for her.  I hope she picks a song she believes in next week.  She often gets a few sympathy votes from me for being a single mother.

Every week Blake Lewis brings something fresh and original to the show.  I love his scatting.  He's less silly than Sanjaya and has a better voice. I'd definitely vote for Blake over Sanjaya if it came down to it.

I agree with Simon that Phil Stacey is a little weak vocally. But every week he sings soulfully with those big blue eyes of his. I'm not sure if it helps or hurts him that he missed the birth of his own daughter to audition for American Idol.

The judges are recently crazy over Jordin Sparks, and yeah she has a nice voice.  But only one performance has ever given me shivers down my spine.  Melinda delivers every week.  And at least as presented on the show, Jordin just seems like a bit of a diva.  At age 17. 

I agree with Simon that Chris Richardson sounds like he belongs in a boy band with his high and soft voice.   When he sings boy band type songs, I vote for him.  When he doesn't, I don't. 

Gina Glocksen tries to be a rad rocker.  When she gets into that rock groove, I vote for her.  This week, she delivered with a Pretender's song.  I'm a little concerned about her next week when it's Big Band time.

March 27, 2007

The tale of too much shopping and the lost purse

Target symbolYesterday my husband and my two kids tried to go shopping but emerged with literally nothing after 3 stores.  My healing broken toe throbbed, and I was starving.  The kids were too cranky to be put back in the car, so I hobbled to a noodle place in the same mall.  And I discovered I lost my purse.  Horror. 

I walked back to Target, but I was too worried to think about my toe.  I wandered the circuitous route we had taken around Target.  I could not find my purse.  No one had turned it in.   

I hobbled back to the noodle place to eat.  I had ordered the wrong noodle dish.  I was very sad.  Everything was going wrong. 

I had to try once more.  So we drove to Target.   I stood in the long Customer Service line.  I felt forlorn, and lost too.  I thought about how long it would take to replace my driver's license, credits cards, etc.  Time I did not have. I felt very very tired.

Then like a miracle, I saw my purse sitting behind the counter.  Thank you kind and honest person who returned my purse with everything inside!!! 

I was too tired to cry "Praise be!" but I must have looked very relieved.  The person behind the counter said "We paged you." in a kind voice.  I believe in miracles and the kindness of strangers.   

March 23, 2007

Planet Earth requires a movie star

Roaring Hippo from the Planet Earth website I'm really ticked off. This wonderful show called Planet Earth will be aired on March 25 on the Discovery Channel.  It was originally produced by the BBC and David Attenborough. In case you're not living on planet earth, or at least not a nature show lover, David Attenborough is a wonderful naturalist who has produced many amazing nature shows. He also has a rich plummy English accent, and when he talks about certain natural wonders or discoveries, he brims with joy and enthusiasm. He literally becomes breathless with excitement. It's absolutely infectious, and wonderful to watch and hear.

When I was a kid, my dream was to become the next David Attenborough. Unfortunately I discovered that much of his work consists of sitting around for literally hours and hours waiting for that perfect shot. So now I just live vicariously through him.

But do I get my David Attenborough? Noooo. The American version of the show is narrated by Sigourney Weaver.  Now I happen to like Sigourney Weaver as an actress. And yes she has spoken up about conservation. But she's no naturalist.  It's not her work.

I want my David Attenborough! I am extremely disappointed. I'm also insulted.  David Attenborough has produced several highly-rated and watched nature shows that have been aired by the Discovery Channel in his own voice. Why do Americans now need a famous actress to watch a nature show? Yes, David Attenborough is grey-haired, and even when young, his looks were not movie star quality. But he's the man. On the other hand, this is the first time I've heard about one of his shows on the Oprah show. Though no mention of his name was made there either. Hmph.

February 19, 2007

The merits of failure

Back when I was a kid, skipping grades was thought to be the ticket for the most concerned parents to achieve academic excellence.  When we moved here from England I skipped a grade.  My brother had a September birthday, and skipped two grades.  My husband had a September birthday and stayed on grade level.  He started taking college classes in high school.

Because I was born in November I was a ten year-old in a classroom of twelve year-olds.  Due to the age gap, making friends was very hard for me.  I think I missed out on a lot socially, because of that age difference.  Academically yes I did well on paper.  I went to a small private college.  I got an MBA from UC Berkeley.  But it took me almost flunking out of college to realise how to resolve my academic issues like how to study and how to compensate for my disability.

Now I understand the new trend is to hold children back from attending Kindergarten.  I certainly understand that some kids simply aren't ready for kindergarten.  But many of these parents have children who are ready, but hold them back to give them a better advantage.  I wonder if these kids like me will have a hard time in later grades fitting in, because of their age gap.

My husband and I both agree that we want our kids to make friends.  I don't want my kids to be bored, but my husband says "Learning how to cope with being bored isn't a bad thing."  My husband says "we can teach our kids anything they need to know."  I'm not so sure about that but I don't want to push my kids the way my parents did.  I don't want them to get the message that my grades were the be all and end of my school life.  I don't think that's what my parents intended but that's the message I received.

Our daughter is entering Kindergarten in the fall.  She has an April birthday.  She already knows how to read and write.  Neither my husband nor I speak Spanish fluently.  We both speak French, but we're too rusty to really teach her, and besides Spanish is much more useful. So we thought about the Dual Immersion program at Castro in Mountain View.  Spanish is one of the few things I can't really teach her. 

We were a bit concerned that the parents might not be involved at all, or too pushy.  Instead they seemed to have the right mixture.  I want my daughter to do her best, because she enjoys school.  I didn't do my best until midway through college.  I hated school for years.

Nobody at Harvard cares what grades my kids get until high school.  My kids will have from high school onwards to compete with their peers.  I hear some schools go to the other extreme and have no competition at all.  Winning or losing is not allowed.   

Continue reading "The merits of failure" »

February 11, 2007

A healthy birth is not a US birthright

I read a post that made me cry. It was about a child that died.  But what stunned me and made me feel both sad and angry was the fact the post implied that babies are safe in the US.  Unfortunately according to a CNN headline, the The U.S. has second worst newborn death rate in modern world

My baby was almost one of the newborns that died.  It took three hours to stabilize him, then he was whisked away to another hospital.  My husband frantically followed the ambulance in our car.   As I sat bereft in my maternity room, a doctor called and told me "We have to operate on him to save his life." and  "He probably won't make it." 

My son has faced death several times since then and surived.  I'm very thankful and I feel I must whisper this lest I jinx anything. --I start 2007 for the first time not worried he might die.

Like many newborns, a contributing cause of his problems was inadequate prenatal health care.  A simple prenatal ultrasound done at any point in the second trimester would have shown there was a problem.  And a vaginal birth was nearly impossible.  His left arm had a massive tumor of 24 cm.  Larger than the usual cervix dilation of 10cm.  No one knew until his arm got stuck as he was born, and he was deprived of oxgyen for three minutes.  In addition the strain of being squeezed during birth exacerbated his condition of low platelets and red blood cells.  He was completely depleted of clotting factors by the time he emerged and almost died at birth.

For a time I was very angry about this but at least in my case I realised that no one would have expected me to carry this child to term.  He with a blood tumor and me with a blood condition where half of my blood cells are smaller than others.  It's a miracle.  So much of pregnancy is still unknown.

But when I tell women from other industrialised countries about the lack of ultrasound, they're horrified.  Most routinely offer two ultrasounds - one at about 13 weeks, and another at 20 weeks to look for physical abnormalities.  At 13 weeks, my son's tumor was too small.  At 20 weeks, his left arm would have been visibly deformed.

We have good insurance.  My husband is a software engineer.  If my family was like millions of Americans, and my husband had the typical 80-20 insurance or no insurance, the costs of our son's medical care would have bankrupted our family, even with my husband's relatively high income.  The billed costs (not the costs the insurance paid) for my son's medical care are over a million dollars and are still ongoing.   He visits a specialist about once a month (down from 5-6 a month).  Billed cost:$300-500.  The insurance pays about $60 a visit. 

However the insurance company pays for very little of his care, because a dirty little secret is that while HMOs whine about the high cost of health care, they don't actually pay for their most expensive patients.  For very expensive patients like my son, the HMO has secondary insurance that pays for all of his care.

But we're the lucky ones.  The number one reason for bankruptcy is medical bills. The Washington Post states,"Most of the medically bankrupt were middle-class homeowners who had been to college and had responsible jobs -- until illness struck."

Before my daughter was born, I had this naive idea that "babies don't die anymore".  Unexamined, but I suppose due to our advanced health care.  Now I know several children who died as newborns.   In fact two babies died while my son was in the NICU. 

In all these cases, except one, there was a failure of our medical system. In all the cases I know about, the mom desperately tried and failed to get the help she needed.  But due to bureaucratic problems designed to "save hospitals money" or lack of insurance, the mother didn't get the medical help she needed in time. I dunno if getting help earlier would have prevented the baby's death.  I'm not a doctor.  I do know it caused the mom a great deal of unnecessary anguish.

In my darkest moments I can imagine what it feels like to experience the loss of a child.  But my experience was like gazing down at a huge abyss versus falling into it. 

But I can't imagine what life is like for the millions of expectant mothers who don't have insurance and literally can't afford to get adequate prenatal care.  I can't imagine what it must be like to have a child born with serious health problems and have to worry about money to pay for it all.  I can't imagine the anguish of wondering if my child would be healthier if only I had scraped enough money to go to the doctor earlier.  I can't imagine having to go into bankruptcy to pay for my family's medical bills.    

We have the latest and greatest neonatal intensive care, but do so little for most pregnant mothers. 

I'm thankful for the good birth, the healthy birth I had with my older daughter.  My daughter had jaundice,  a common problem. For most babies,  jandice is resolved easily if treated quickly.  In this country getting quick treatment for jaundice is a privilege I have due to my relative wealth, the fact that our family has health insurance unlike 13.4 of pregnant women.  Furthermore,  this March of Dimes article says the income thresholds for infants are often higher than for moms, so moms are denied health insurance as soon as their babies are born. 

Our health system is the most expensive in the world and it is the worst in providing basic health coverage. It ends up costing a lot more, because an ounce of prevention often costs a lot less than treating something after the fact.  The US spends billions of dollars treating NICU babies.  I wonder how many are there simply because the mom wasn't treated adequately during her pregnancy. It all makes me cry when I think about that.  It also makes me very angry.

I'm definitely not a socialist.  I believe in the free market.  However I also believe a few things are public goods.  For example most people accept the idea that everyone is entitled to a free education through high school, because it's a public good.  Everyone is worse off if education isn't provided to everyone. I don't understand why unlike the rest of the industrialised world, people in the US don't feel that health care is also a public good.  This country does accept health care is good for senior citizens and children in very low income families. 

I originally wrote "Will it take a national health crisis before the country wakes up?"  Then sadly I realised we already have one.  The rate of premature births is rapidly rising. 1 in 8 babies are born prematurely.  No one knows why.  Based on my experience, I'd have to say a contributing cause is inadequate prenatal care, even for women who have insurance.

I read recently that Assemblywoman Sally Lieber (sadly a representative of my town) and a Democrat wants to ban spanking.   Meanwhile our Republican governator is proposing state health insurance.  I will not vote for Sally Lieber ever again although I have voted for her every single time she ran for office and I could cast a vote.  Before this proposal I would never have voted for Arnie.  However I will if he gets this though.

January 19, 2007

Inadequate use of technology costs lives

James_kim_2With great sadness, I just read a news headline title Report: Frequent Confusion in Kim Case.  James Kim was the man who died of exposure while hiking out to save his family.  I don't know if a better search operation would have changed the outcome.  However, the "what if?" must be agony for his family. 

Unfortunately it reminds me of the reports I read about the rescue operations for Katrina.  Lack of communication, lack of coordination, and lack of appropriate use of technology cost lives.  We have the greatest software and networking companies in the world.  We spend billions of dollars on the "war to fight terrorism."  Our phone records can be tapped without our knowledge and consent?  How about spending some money on producing systems that work for saving people from natural disaster?  How about a system that tracks cell phone records for folks that are reported missing?

"Two Edge Wireless engineers acting on a hunch sifted cell phone records and found a text message for the Kims that had bounced off a cell phone tower near Glendale and had been received somewhere to the west of the tower. They notified authorities the night of Dec. 2, which focused the search."

Before this was done the authorities had a search area of 300 miles to search.  I don't understand why a cell phone search wasn't part of standard search and rescue procedure.  I also don't understand why this records search took so long when the family was reported missing on November 29.  I can search all the calls I've received or placed in a matter of moments.   But then it's not a manual process. 

It's just incredibly ironic to me that a man who advocated the latest and greatest portable technology may have died because people didn't use technology appropriately.

The government didn't even rescue the Kims stranded in the car.  A helicopter hired by the extended Kim family acted on a hunch.  The Kims were lucky and wealthy.  I applaud the Kims for using all the resources they had, but one's ability to be rescued shouldn't depend on wealth.  It's shameful in the richest country in the world.

I don't actually blame the sherrifs involved.  I myself have worked on disaster recovery, albeit for computer systems.  I know that in crisises people rely on procedures; procedures they've already rehearsed.  It's hard for people to think clearly. The procedures must involve using technology and coordination in ways that work.  Otherwise many people get confused under intense pressure. And if this occurs rescuing computer systems, I can imagine how much more confused people get trying to rescue people.  Much more pressure and also emotion.

I'm still very sad that James Kim died.  And getting a better search and rescue effort for Oregon after the fact is probably little consolation to Kim's family. However, I'm glad that a relatively wealthy and well known individual was involved to give the state a wake up call. 

Unfortunately I still feel that a failure in other states could still happen, because most of the individuals involved in Katrina were poor and uneducated.  We really need national procedures to deal with disasters.

I read many many articles and blogs that blamed the victims of Katrina and individual officials.  "They should have left when they heard the warnings."  Well, if you don't have car, or enough gas to get out far enough, you'te stuck waiting for the government.  Confusion also reigned and inadequate resources were deployed too late. It meant that pets or people in hospitals couldn't be transported.  People had to choose to leave loved ones behind.  Some people chose to stay.  James Kim chose to leave to find help.  It's easy to second guess after the fact.  Katrina victims should have left.  Kim should have stayed.  But the right answer at the time wasn't clear.  And these folks should never have had to face these terrible choices.

Another report states "The US is unprepared for another disaster."  I don't know if terrorists will strike our airports or airplanes.  I do know that people will get lost, and more major hurricanes will strike.  I wish our country had good plans to rescue our own before we try to rescue other countries like Iraq.

January 17, 2007

Silence about disabilities=shame

I thought that attitudes towards disabilities were changing.  I thought that what made things awkward, about talking my son was that for a time he was not only disabled but in danger of dying.  The infant death taboo is a whole other post.

But when I read this article "What's the greatest challenge of having a daughter with autism? Telling people about it. , It makes me sad.  As someone who grew up with a movement disorder, it's the same attitude my parents have.  My parents occasionally talk about "my shake" at home but they don't use the proper term or say I had a disability.  I don't actually shake at all.  I jerk. My parents very rarely talk about it to others.   Like the writer of this article, they're not ashamed of me but hope they can hide my disability from others.  That people will only notice my good qualities.

Unfortunately, the world notices differences. As a child other kids called me names and people stared.  They sometimes stare now.  I don't have any problems with speech like Paige, but as a child I didn't know the words to defend myself.  I grew up feeling ashamed of my disability.  My parents occasionally told me they were proud of me, but I interpreted their silence as shame about my disability. Some people felt awkward around me not necessarily because of my disability but because there was this elephant in the room that we never talked about.

Parents think they're protecting their children by not talking about their disabilities, but really they're leaving their child unprepared for the world.  For a time I was very angry with my parents.

Now with a son with an unrelated physical disability, I understand the awkward silences.  I understand the looks of horror.  Sometimes people's eyes fill with tears. Sometimes people spill their life story.  It creates odd moments sometimes tender and sometimes so awkward or maudlin I wish I could just leave.

My son has a giant vascular tumor in his left arm that is currently in remission.  The details are horrifying. He has multiple delays and his left arm barely moves.  But those are his problems.  I want people to see my son as the bright, social boy he is, and not his disabilities.  However, his arm is a part of him as surely as his sunny smile. 

For a time I stumbled around, lost in medical jargon.  I didn't have easy words because my son has a disease that no one has heard of.  No one understood me.  Later, I realized I needed to keep it simple and use easy words like "tumor" "speech delay".  Most people don't actually care about the details.   They just want to have some understanding of what they see right now. 

So I talk about it in a matter of fact way when things come up.  For example the other day I was talking with friends about first haircuts.  I said I put off cutting my son's hair for far longer than I prolly should have.  I was afraid he might go through another round of chemo and steroids, so why cut his hair when it would just fall out?  My friends have gotten used to this kind of talk and it's just part of the conversation.

I won't lie.  I have lost some friends.  Some friends who say "it's too hard." "why do I have to talk about this stuff?" aka my life or simply avoid me.  You don't know who can handle the truth and who doesn't.  It has surprised me who left and who stayed.  But I would rather have friends who truly accept and appreciate me and that includes my son.

Everyone has good days and bad days.  My bad days include trips to the ER.  My good days include one of the happiest people I know.  I wouldn't trade my son for anything.  And so every day I model for him what I wish I had when I was growing up.

December 08, 2006

The Kims could have been my family

Last night I saw the news that James Kim died of hypothermia.  With a sudden shock, I realised "I know that guy!"  I wracked my brain.  Then like a true geek, I used google.

James Kim was a senior CNET editor.  He appeared on my Tivo every week explaining the latest digital audio gadgets.  His eyes lit up and he smiled when he showed something he thought was particularly marvelous.   I will miss him.  I watched him both because I really want an IPod and because he was cute.

I had heard there was a family that was lost in the Pacific Northwest.  I didn't really pay much attention.  I broke my toe ten days ago and I've been craving more mindless entertainment.  I didn't expect to actually recognise the guy.

I know that James Kim left the car to help his family.  I could see that James Kim was clearly an intelligent man.  He and his family were very resourceful in their efforts to survive for a week with no food and no emergency supplies.

It made me realise that the only thing currently in my car is a basic first aid kit, a small water bottle and some jumper cables.  Before we drive in snow, I'll buy some space blankets (very small and cheap), some flares and a few emergency food rations (again they're small).  I already have my earthquake survival kit at home that fits in a backpack. 

It's hard to write a post like this without sounding like I'm blaming or criticizing James Kim.  I'm not.  In fact when I was about nine, my own family narrowly escaped Kim's fate of dying by hypothermia.  They hiked down Grand Canyon without correctly estimating how long it was until sunset.  My mom tripped on a rock and hurt her leg, which further slowed them down.   They wound up hiking on very narrow trails with no flashlight.  They too got lost.  They also got very cold.  Luck saved them.  Their wrong trail eventually led to a road.

I think that lesson didn't quite sink in because it had a happy ending.  I will learn from James Kim and be more prepared, because you never know when you may get stuck in a very bad situation.

Crossposted at her blog Water Owl's Movements

November 15, 2006

Bracing myself dorky for my kids

For want of this lace-up ankle brace, I couldn't go on a "leaf walk" with my daughter today, so I'm sitting here typing to you.  I sprained my ankle again.  A repeated pattern I have. 

This time, I was walking out from the flu shot clinic.  I felt a little woozy.  We were supposed to sit in this crowded room with other families.  I think I may have even said out loud "I don't want to stay in this cesspit of germs."  I meant no offence to other families.  My own family has their own germs.  My son has a perpetual cold and is still on a low dose of aspirin with no shots.  I'm still nervous from his long period of being immunocompromised.

Anyway, I paid for my sins.  We stepped outside and I stumbled on a gouge on the sidewalk probably carved out by the devil of germs.   

Yesterday a podiatrist gave me an ankle stress test.   This is where he yanks your ankle in a weird position and x-rays it.  He told me if the bones split apart I need an operation.  Yes, it's painful as it sounds.  My bones are okay.  I limped back to the exam room. 

The podiatrist said I have hyperflexible ankles.  Nothing to be done, except physical therapy to strengthen my weak muscles. I also need to wear a lace-up ankle brace when I walk on uneven surfaces, and especially when I go on a hike or play sports.  The hyperflexible ankles are supposed to be part of my movement disorder myoclonic dystonic.

Premotherhood, I might have just said the ankle brace is a bit too dorky for me to wear except when actually hiking or sporting, but now I have two young children.  In fact prekids, spraining my ankle was just somewhat annoying.  I'd hobble around.  It was painful, but life went on.

But the past two Halloweens I've not been able to go trick-or-treating with my kids, because I sprained my ankle.  So I will actually follow the doc's directions and wear the ankle braces on uneven surfaces.  Therefore my ankles will look dorky on many occasions.   

Now understand, I'm no fashionista despite the fact that I was part of photo of fashionable Silicon Valley Mom bloggers. But there's not being fashionable, and then there's looking like a dork.

I really can't think of a good shoe or fashion accessory to go with this brace.  It comes in black (above) and white.   They remind me of Victorian boots...sorta. If I were a man, I might try spats but that was the fashion for men not women.  What do you think?

November 06, 2006

I can't vote on my own anymore

For the past two elections, for the first time in my voting life, I couldn't vote on my own.  I had to ask my husband to help me use the touchscreen.  I  have a movement disorder, but I can use an ATM touchscreen on my own just fine.   However, the touch screen bubbles on the voting machine were placed so close together and the screen was so poorly designed that I could not pick the candidates on my own.  Just one of the many flaws of the touch screen voting machines.

Like the rest of the country I was really embarrassed about the voting shenanigans in Florida.  In response, the California politicians rushed in these touchscreen machines.  Many people don't trust them and rightly so.

More than terrorists hijacking airplanes, I worry about terrorists and other extremists hijacking our voting systems.  It is too easy to change the software of our current machines and therefore change people's votes.  The code is proprietary.  Under current law only certain groups are allowed to test the machines. 

Even with no malicious intent involved, computers crash.  Software has bugs.  You can not count on any computer system to work flawlessly.  Yet our current voting system is based on that assumption.  The error checking and auditing is laughable.  No business would stand for such a system.  I used to work for bank systems at credit unions.  Believe it or not, yes there's a paper trail for every single transaction you make, even at an ATM.  And occasionally the credit union must go back and audit every single transaction.  The incumbent Secretary of State only got the machines to produce a paper trail after massive protests.  The fact the machines weren't designed with a paper trail to begin with indicates the massive ignorance of the current Secretary of State about technology.

Some folks say "vote absentee."  That will not help you.  A human will merely use the same machines to put your vote into the same flawed machines.

Before my life as a mom, I help design and deploy the infrastructure of a major broadband ISP. I thought a lot about security issues.  I don't believe in government conspiracies.  I do believe that my vote counts if the machines work.  However I don't trust that computers will always work perfectly.   

We're at a crucial time in this whole voting machine process.  I actually haven't made up my mind who will get my vote for governor.  I still haven't made up my mind about the huge numbers of other ballot initiatives, except I'm pro choice so I'll vote no on 85.  I still have to sort through piles of information and actually read the text of all the initiatives. But I do know I'll vote for Debra Bowen for Secretary of State.

One of the first things she did as a rookie congressperson was to pass a bill to put the State Congress online.  She also passed a bill to prevent identity theft.  Her web site says sensible things about the voting machines.    If you care about the integrity of our voting system, I urge you to vote for Debra Bowen.

November 01, 2006

My baby can dance

My baby can dance.  Put some music on, and he dances as well as the proverbial white guy.  He's a quarter white and a quarter size of the average white guy.  He gets up and shakes his booty.   He shuffles and sways to the rhythm...sorta.He holds your hands and smiles into your eyes.  He likes music with a smooth steady beat.  Sometimes he stamps his feet.  He doesn't like it too fast or too slow.  He smacks me if I put the wrong music on.  Disco is good.  Hiphop, but not Death Cab for Cutie.

He also shakes his head a lot at random moments and smiles at you.  You have to shake your head back. He doesn't say anything, but maybe that's because I haven't given him a microphone.

You can sing him out of almost any bout of crying.  My daughter knocks him down...accidentally she says.  She also says, "He's not a baby anymore. He's a toddler."  But I mean baby like the rock and roll term, okay?  She sings "You are my sunshine" to him.  He stops crying.  Works everytime.

Well, except when it comes to pants and shoes.  Most of his temper tantrum involve pants.  He screams and yanks off the wrong pants. He's made it very clear you have to wear the right pair of pants.  Baggy blue nylon pants are his pants of choice. He doesn't care about other clothing, but pants matter.   He prefers them hanging low like any teenager.

Shoes are important too with a good bright color like pink.  Not girly shoes, mind, but Vans.  He picked them out at the shoe store.  Too bad they weren't his size.  He cried and cried.  He insisted on trying them on anyway and clomping about in them.

On our latest shopping expedition, he led us straight into Pac Sun, most definitely a store for teens.  I'm totally serious.   I thought sure, why not.  We're still in the 'walking is very novel' phase.  He tugged onto a t-shirt.  I told him he was too young, but he wouldn't listen.  He lay down, and cried.  We had to carry him out.  Bemused teenagers watched us go.

Now I don't let him watch MTV, but of course the media controls everything. So maybe he has dreams of being on MTV as the next toddler star.  They start younger and younger these days.

My mom tells me I sang songs at age eighteen months.  I rode on my dad's back and sang songs to him as they hiked across the world.  I also held my hairbrush as a microphone and danced in front of the tv to "Top of the Pops" a Top 40 show in England.  I also told my mom I was going to grow up and be a star. Sadly for the world, I decided not to pursue a career in music.  But who am I to crush my baby's boy dream?   I'm signing him up for a Music Together class.  We all have to start somewhere.

Thida's journal is at Water Owl's Movements where you can check out Little T's latest steps.

September 16, 2006

How many friends does a little boy need?

Lately I've been feeling bad because my  son has only three friends his age and two of them are twins.

I know that the term friend is stretching it a little for a two year old since he treats everyone about the same.  He smiles hugely at them.  He'll look them in the face and talk to them.  It's even odds whether the words will be English or his own special language.  Then later he grabs their stuff.

And then on top of that, he has an older sister who says she has "so many friends" (her words)
Of course we have to play with them, or she tells me "[X] isn't my friend anymore, because I never see her/him."  Yes my daughter knows the exact guilt-inducing words to get me out on a playdate.

But sometimes I feel my son could really use more playmates nearer to his own age.  Yesterday at a park he and an eight-year old boy were wrangling over a plastic spoon.  My son won, because the eight year old just felt too ridiculous fighting with a boy, the size of a one-year old, who was yelling loudly.  My son typically deals with older kids and this technique works for him almost always. 

I want my son to learn that while it's good to hold on to your stuff, but you can't win all the time with this technique, nor is this a good way to win friends.  His friends hold tight too and they just walk away holding the toy triumphantly.

I just realised I had the same concern about my son last year.  And then he had another relapse and secondary infections and even if he'd gotten more friends, he wouldn't have been able to see them since he was immunocompromised.  And I'm not sure where in the past three months of actually being able to see other people, I can  it all. And I thought maybe this is just a proxy for my worry that it's been so long since we've been out in the world that I've forgotten how to make friends.  And maybe my son actually doesn't care that much as long as we see people.

At age three he'll go to preschool (if he manages to stay off chemo and steroids long enough to get his shots).  I worry he'll get picked on, because he's small and grabby.  Maybe I just need to get out more and stop worrying so much.

September 14, 2006

Outsource your mom work

One of the many ironies of my life is that I decided I could "only handle two kids".  Then nature had the last laugh and gave me a kid who's so much work.  His list of medical needs, therapy appointments and developmental exercises take up hours a day.  And that doesn't include the fact that he's not walking at almost two and has various other delays, so we have all the typical baby stuff too. 

He's also the happiest person I know.  I laugh with him every single day.  I find myself drowning in cliches.  But he really is like the super sweet smiley cancer child you see on tv, bravely enduring chemo and other noxious procedures.  At least as long he gets his own way.

But while he makes it all worthwhile, it doesn't reduce the sheer amount of work. I dunno how I and my husband do it.  I dunno how any parents do it, except one thing at a time. Sometimes when I think of the sum total of what my son needs and what my daughter needs and what I can do, I start to panic, and feel totally bad and inadequate.  In fact in many ways I have battled and overcome these need to do it all and be the perfect mom at the same time as my son has battled his medical issues. It helps a lot that my son is so sweet about his illness.  But like my son, I have these little relapse and setbacks.

But the biggest lessons I've learned is outsourcing.  Yeah a Silicon Valley term.  This is Silicon Valley Moms blog.  Before my son I totally underestimated the value of outsourcing.  One of the best things a friend did for me in the midst of one of my son's medical crises was to say "Thida, you REALLY need a break." and take me out.

But before my son, I'd get stuck on guilt.  Sure I'd take time off.  But in my heart, I believed moms must do every aspect of motherhood, and never take any time off or I was a BAD MOM. Well okay if I had work, I could do a little less, but not really.   I had to be there for everything, do everything.   

I still encounter this attitude all the time.  I see moms who are totally stressed and overwhelmed to the point where they no longer enjoy their own children.  When I suggest they might want to take some time off, other moms chime in like I'm crazy for suggesting it.  In my experience, the more work your children are, the more necessary breaks are.  When I come back from a break, I come back refreshed and I appreciate my children ten times more.  My children also appreciate me for about five minutes, then they go back to taking me for granted again.

Sometimes outsourcing means hiring someone, but outsourcing can also mean old-fashioned swapping with other moms and babysitting from grandparents.  I do have a nanny because like I said before, my son is just too much work, and we can afford it.  I also swap child care of my daughter with a couple other moms.

According to my mom, a wise Burmese woman, this "need to do it all" is a)Western thing since most women outside the West don't raise their children in houses as a couple, but rather in an extended family and b) a phenomenon of the past century.  In the past, even in the West, people lived in extended families.  People other than moms help raised children. Everyone acknowledges single parents have a tough job, yet somehow the two-parent family is supposed to be sufficient.  With all my son's needs, I need more help than just my husband can provide.

Perhaps some moms never need a break, but that doesn't negate the fact that others do.  Nor does it mean that the parents who need breaks love their children any less.  This is not a question of love, but of parents' capacity to give and children's demands.  Some children are more demanding than others.  Some parents have more energy than others. 

Mom work is very undervalued and not paid at all, but it can be very hard.  Let's help each other.  I rally you all to outsource mom work!  Moms who have more energy and/or less demanding kids, if you see a mom that's stressed and overwhelmed, tell her it's okay to take breaks.  If you live close enough, offer to exchange babysitting.  Moms who are stressed and overwhelmed, please ask for help, so you can enjoy your kids again. You'll be a better mom if you do.

Thida blogs at her journal Water Owl's Movements.

September 05, 2006

How do I tell her Steve Irwin died?

I'm really bummed that Steve Irwin, Crocodile Hunter died. And I'm not sure how to break the news to my 4 year-old daughter. 

I have to admit that at first I wasn't a fan of the guy.  And I certainly wasn't going to expose my children to him. I heard he wrestled with crocodiles.  He sounded irresponsible and stupid.  His show with the Wiggles called Wiggly Safari won me over.  He seemed to have a genuine love and respect for all animals. I learned about his conservation work and his Australia Zoo.  He carefully explained to the children about dangerous animals. 

I watched a show in which he did wrestle a crocodile, but it was to save the crocodile.  Somehow the crocodile had gotten trapped in a tiny drainage ditch and the only way to get it out was to wrap it around in chains and haul it out.

My first reaction on hearing the news was "A stingray? How could he get killed by a stingray?"  Stingrays usually aren't that dangerous.  In fact while I've never wrestled a crocodile, my daughter and I have both petted stingrays at the Monterey Bay Aquarium. 

Steve was swimming with a much larger and clearly more aggressive stingray than the ones in the aquarium.  From the ABC story it sounds like a freak accident. 

And this is my dilemma.  My daughter is already afraid of bugs and other creatures that she deems scary.  It's an arbitrary list.  For example spiders are scary, but she loves reading and watching about lions and crocodiles and many other animals.   Steve was her hero.

How can I explain to her that her hero got killed by a creature that she herself has petted?  I will tell her that the barbs at the aquarium are clipped.  But sometimes people are just in the wrong place at the wrong time and they die.  I don't know to explain that to her without making her really scared.

As I was writing this post, my daughter came and asked me to read it to her, so I broke the news. Her only question was "What do stingrays eat?"  I think she's taking it better than I am.

Thida writes at Water Owl's Movements.

August 21, 2006

I celebrate my son's half shoe size successes

My son has grown half a shoe size. I know for many parents this isn't a cause to jump up and down and celebrate, but for us with a child who didn't grow for months, we're so thrilled. 

On Friday, we had my son's Individual Family Service Plan(IFSP) for Early Start. We discussed his progress for the past six months, or in our case the past nine months because his IFSP got delayed like everything else. ;) The report and the goals outline which services he receives.

His ISFP report outlines how my son had another relapse of his tumor, his third, and a secondary infection.  After he started chemo and massive amounts of steroids, he stopped talking if one word a day counts as talking and he stopped pulling up.  He started pulling up again a couple months later.  He didn't meet his goals to walk or to be weaned off his g-tube, but he's worked hard. 

He met these goals:

get up on his knees, cruise 90% of the time, reach up on his toes and walk with assistance of another parent or a walker - hooray

He can also stand independently if standing for 10 seconds counts. :) Okay it doesn't, but he's working on it.

He initiates conversations.  He says these words all the time "go", "ball" "bubble" "bye" "yum" "uh oh" "wow" "yeah" and "mama".   He says "backpack" "car" and "dada" maybe once a week. He'll say "mo" (more) "baba" (bottle) "fire truck" "bird" and "ca ca" (cracker) if you say the word first.  He understands quite a bit, but other words he won't repeat.

I list these individual words, because now I'm a parent, I no longer believe the quote "The limits of your language are the limits of your world."  But these words surely reflect his personality.  He's a "yeah" guy not "yes" and "wow" is actually "wowwwwwww", a term of great approval. "go" tells me to go outside where he wants to play all the time and rush around.  He's so active.  Backpack reflects his and his sister's passion for Dora the Explorer.

He made some progress towards feeding. He eats like a typical toddler now instead of examining each bite like an inspector.  He eats 3 tablespoons at each meal instead of 1-2.  He drinks 3 oz of formula a day instead of 1.

His goals for the next six months are to walk, talk more and to to eat more.

And to me, half a shoe size symbolizes where we are right now.  It's not the full shoe size of typical kids.  But when I think about where those little feet have been in the past nine months, I feel incredibly proud of what he's accomplished.

Thida's journal can be found at Water Owl's Movements.

August 16, 2006

Blogging the tumor

Blogging has saved my sanity in the darkest period of my life. I could not talk about it, though the problem was incredibly large and led to lots of staring when we did venture out in public. “My son has a life-threatening tumor.” It took me almost a year to be able to say that phrase. A year in which I flailed around swimming in medical jargon. I used terms like Kasabach Merritt Syndrome, hemangioma, and blood-clotting disorder. Nobody understood what the hell was going on and often they were afraid to ask, so they settled for staring or unfortunate misunderstandings of the problem. I’ll never forget how someone told me very sympathetically how her sister had bad eczema as a child, but she had gotten over it and my son would be fine too.

My son only added to the problem. I only brought him out in public when he was relatively healthy. When he was on massive doses of steroids or chemo, he had to avoid people, because his immune system was compromised. But the effects of steroids linger. Puffed up with steroids to a cherubic ideal of a fat baby, he laughed and smiled, so happy to see people. How could he not be healthy when he had such fat cheeks and a round belly? When people asked me, “How are you doing?”, I often said “Okay” or “Hanging in there.” I didn’t have any energy left to explain, not even to friends.

Finally my little ‘okay bubble’ burst when he had a relapse and his tumor regrew. It’s pretty obvious things are just not okay when your son is in the hospital receiving chemo. His fat belly remained, but his cheeks grew gaunt, his arms and legs whittled down to sticks. He looked the picture of a Third World starving baby shown on tv. The few times he ever went outside, people would stare and if I saw them staring would ask uncomfortably “How old is he?” When I’d reply, they’d look away. I wish then I’d be able to tell them I was not starving my own child. In fact at that time and up until now 600 calories pumps into his stomach every night through his G-tube, a small plug that connects directly to his stomach.

The chemo killed his appetite and destroyed the lining of his stomach. The steroids ruined his digestive system. He relapsed another time. He had infections. More hospital stays. His tumor has finally started shrinking, hopefully for good leaving in its wake lots of collateral damage. I’m still recovering.

But back to blogging. During that second relapse when I was so brokenhearted, one of my friends said  “Why don’t you blog about it?” I’d been blogging in a desultory way since 2002, back before it was even called blogging. But not regularly. I didn’t have a blog voice. Now I had something to blog about.  I blogged about what was happening with my son. But of course I discovered I had more to say than just a medical journal. I also disclosed more than I would have in person. This medical stuff is so hard to talk about. It makes people uncomfortable. And I have this very English tendency to just shut up when people look uncomfortable.

To say it was therapy both trivializes what I was doing and therapy which can be deep exploration. I’m learning to talk about a deeply taboo topic, infant illness. If you don’t think it’s taboo, ask yourself how many celebrities, except tough football players admit to having sick children. Now I can talk about it out loud. I no longer say “I’m okay” when I’m not. I no longer hide my son’s condition behind medical jargon. I’ve never spent a second feeling ashamed of my son or quailed from his long list of medical conditions. However for a long time I took other people’s reactions as shaming.

Last year I even put a link on dotmoms among the 600+. And I reached the point where I started to get a little traffic. Then spam arrived. I was struggling to feed my son. He was losing weight and vomiting. And I’d log into spam about diets. Now I could have complained to blogger about this outrage, but instead I ran back to more private blogging spheres.

A few folks found me anyway and commented on my posts about feeding tubes, the NICU, tumors, and other special needs stuff.

Then lately several nudges at once brought me back out. This blog.  Last week I met Badgermama at a social event unrelated to blogging. Lots of post about blogher. At our photo shoot,I talked to Glennia about how hard she tried to get parents to connect to parents in the hospital and largely failing due to the hospital not getting that parents can't do two months of training.  I gave Jill the Reader's Digest Summary of my son, because she asked, and I felt okay. Not comfortable because it's not a comfortable topic,  but not worrying that it's not comfortable. I've crossed a new threshold.

I listen when several things happen at once. I start to believe perhaps enduring spam is worth venturing forth into more public cyberspheres again. So here am I. I know how hard it is to have a child with serious medical condition/s. I welcome your comments, but not your spam. I've only gotten this far because other folks broke the silence.

Thida blogs about her life with a typical daughter & special needs son, writing, the San  Francisco opera, politics, organic food & sundry opinions at  Water Owl's Movements.

Walking the education balance beam

On Monday my daughter graduated from Mini Star 1 gymnastics.   I have mixed feelings about it.  On the one hand I'm proud of her. On the other hand she seemed happy to stay in Mini Star 1 forever until her friend Sylvia moved up to Mini Star 2.  I know it's the beginning of a long line of graduations and keeping up with her friends.

She's always loved gym.  However when she started, she was terrified of the balance beam.  She wouldn't walk across it unless someone held her hand.  Passing Mini Star 1 requires her not only to walk across the beam unassisted, but to tiptoe across it.

She used to laugh and giggle at gymnastics.  Now she looks more serious.  I don't want to push her, at least not about gymnastics. I've talked to parents around here who sneer at parents who say they won't push their kids.  I have a more nuanced view.  I think sometimes we all need a little encouragement, a little nudge to do better, strive more, at the right time, because the balance beam, life is scary and discouraging.  But I never want my kids to feel my love is conditional on their performance.  I also think kids need unstructured play time or they will grow up as adults unable to sit down and relax.

I personally was a product of parents who pushed me too much.  When we moved here from London, I was attending a boy's boarding school.  My parents thrust me into sixth grade at age ten.  I had a fair degree of social intelligence, but even the most socially saavy ten year old can't navigate the intriacies of twelve-year old social networks.  I was lost and they knew it.  It was also a small class of about fifteen girls.  I made one friend each year.  Then that friend's parents would notice she only had one friend and she's get transferred to a different school. Now my parents tell me not to worry about my children's education.  It's terribly ironic.

And here we reach the crux of the matter. Twenty five some years later and I worry I'm not recovered enough from my horrible educational experiences to make choices based on what my daughter needs.  Actually worry is too strong a term.  In the grand scheme of things that concern Thida, this is a 2 where 10 was serious worry that my son would die. I know my daughter will be fine and I'm conscious this is a land of plenty problem.  But nonetheless I want the very best for my daughter and my son.  And it's something I can endlessly discuss with my husband, because we're deluged with choices.

But you know gymnastics is part of my recovery process.  I'd never take it in a million years.  It's the type of thing I'm spectacularly bad at.  It requires eye hand coordination and good balance which I don't have due to my movement disorder.  Horrifying stories of my youth buried and forgotten surround gym.  The first time she was tested, I clenched my fists half convinced they'd flunk her.

Of course they didn't and it's all worked out beautifully.  We took it because her friends were taking it.  If I take that lesson to her education, we'd move to Los Altos.  All her friends were living in Mountain View, but almost all are moving to Los Altos school district.  Problem is Los Altos doesn't have as good special needs resources and I don't want to live in a town without sidewalks.  But still I'm trying to learn to walk the education balance beam without being so scared.  I'm not my parents.  And while school was a place of horror for years, I did eventually go to a wonderful college and get an MBA from UC Berkeley, so my parents did pretty well after all.

We've tentatively decided to put my daughter in Spanish Immersion in the local Mountain View district.  She's four this year and already doing Kindergarten math and learning to read.  She has asked us to learn both.  I hope learning Spanish will keep her interested enough that she won't get bored.  I think the mix of students will be enough of the achievers.  I think she'll do fine as long as she's not with girls who think it's good to be dumb and pretty.  You know the type of girls I mean.  I actually don't care about test scores so much as the social mix and not getting bored.

I have no idea what to do with my son who's almost two, but has multiple physical delays, speech delays but is socially advanced and seems bright.  I think he'll catch up with his speech in the next year, but he'll need occupational therapy for his arm for years and years. We think about moving to Palo Alto, but with the money we'd spend we could pay for so much therapy.  Plus we really love where we live.  It's walking distance to the library, park, shops. And two of the neighbors have boys my daughter's age.

Sometimes it sounds silly to me to be thinking of education now when the kids are in not even in kindergarten, but if we change our minds, the waiting lists are long and moving, well, that's a whole other nightmare.  How are you walking the education balance beam?

Thida's journal can be found at Water Owl's Movements.

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August 14, 2006

Tv my drug of choice

I confess tv is my drug of choice when life is stressful. When things are bad with Little T, I watch a lot of tv. In the hospital, at home holding him being human pillow, I watched a lot of tv. When life gets too overwhelming and talking about it just won't help, I watch tv.  Being a Silicon Valley mom, I have a Tivo, so I only watch tv of my choice.  The tv my kids watch is always educational.

As drugs go, tv is wonderful, the best. It lets you forget about life for a while. It relaxes you. It produces a trance like state similar to that found in a good narcotic. Then you can turn the thing off,and except for perhaps wasting some time, there are no side effects. And you might even learn something.

The righteous parents who decry how tv rots children's brains must have forgotten how much tv they watched as kids. The studies that show kids IQs dropping or speech delays with a few hours of tv a week seem extremely flawed to me. They are often based on self-reported data. Sure if you sit your child in front of the tv all damn day, their brain will rot. Not necessarily because of the tv watching, but because kids need stimulation besides tv.

Or maybe the parents of kids with problems sit them in front of tv because they don't know what else to do with them. These parents will probably not admit in a survey that their child watches tv all day. Instead they'll respond 'a few hours a week' like the rest of us.

Both my children watch tv as part of a balanced diet of activities. Special K also eats treats as part of a balanced diet of food. I feel sorry for those kids who never get to watch tv. I regard them the same as the child who never got to eat anything sweet growing up. She was always sneaking candy, because it was this forbidden treat. Once your kids go to school, you can not escape tv or sweet things, so you may as well teach your kids to be responsible consumers. 

We don't watch commercials, though sometimes we zip by them.  I've told my daughter how ads make things frequently look better than they are and people are trying to sell things.  She notices ads all the time anyway.  Ads are not restricted to the tv.  Step outside and billboards are everywhere. Another silly argument for avoiding tv, shot down.

The Tivo saved my breastfeeding.  Sure breastfeeding is magical for five minutes, but then your baby breastfeeds for another fifteen to twenty minutes.  I had limits to how long I could stare at my baby's guzzling mouth and the back of my baby's head.

The Baby Einstein video or any video has allowed me to regain my sanity during the midafternoon crazies when the kids are getting way too punchy and I'm too tired to wind them down myself.  The alternative is me yelling at them or putting them screaming in their crib or bed.  Instant calm. We all relax.

I'm not saying hand over the remote control to your toddler and let her watch hours of tv unsupervised, but this parent is really tired of reading about how tv or any technology is the cause of a host of ills and therefore should be avoided.  Cars accidents are a leading cause of death for children.  Nonetheless I drive my children in cars everyday.  No one suggests banning children from cars.

I believe my job as a parent is to use technology responsibly.  I use tv like any other parenting tool I have. I have no problems with tv rating systems.  I do have a problem with parents who expect the rating system to supervise their children when they use tv instead of themselves and then make it harder for me to have access to tv. Unlike a movie on the big screen, it costs nothing but time to watch a tv show.

I personally have watched every show my kids have watched, not every episode, but every show.  I plan to do this until my kids are old enough to be saavy media consumers.  I don't think any rating system can tell me what my child finds scary or disturbing.  My daughter doesn't find hospitals at all scary, so any medical drama is fine.  However arguing is scary to her, so Cinderella is scary.

If I had to do slogans for tv education, it would go like this: "TV's a powerful and useful drug, so please watch it responsibly."

Thida's journal is Waterowl's Movements

August 04, 2006

Top Ten Signs My Kids Live in Silicon Valley

10. My 4-year old daughter says, "I can speak Spanish" and says a Spanish word. We're not a bilingual family nor does she attend a bilingual preschool.
9. My daughter takes her own pictures with our digital camera.
8. My daughter asks me, "Why don't we order that on Amazon?"
7. My 2-year old son's playgroup is coordinated entirely via email.
6. My daughter asked, "Is the opposite of ok 'cancel'?"
5. When I asked "Do you know the recycling song?" on the playground, the kids knew several different recycling songs and sang them to me.
4. My daughter sent her first email at 3 years old and received her first email at that age too.
3. I first discovered my daughter could read when she read words on a video game.
2. My daughter says, "Let's go out for sushi."
1. My daughter says, "I need to go do my work" and goes and types on her own laptop (an old IBM Thinkpad) given to her by her dad.

August 03, 2006

Where everybody knows your name

Hello, my name is Thida and the place I've visited most often in the past two years is the

I find the place both very comforting and incredibly annoying. 

I find it comforting that many of the people there recognise my son (and sometimes me) and say hi.  Folks from the NICU which was two years ago still remember him. I love the people there.  Almost everyone seems to be kind and keep in mind how stressful it is to be there with a very sick child.

When my daughter was visiting there a lot at her insistence, because we didn't have reliable childcare at the time, but clearly half not wanting to be there, Child Life (a hospital service) gave her an enormous stuffed dog.  She named it 'Dell'.  Dell has an active life and still accompanies my daughter on adventures.  Never mind his size, though she can barely see over his head, my daughter lugs him around.  Sometimes when Dell is not around, she'll say "I have a dog named 'Dell'."  It will be a little while before the other person learns that Dell is in fact a stuffed dog.

I can't stand the parking garage.  Even after almost two years, I still don't know how to park there.  I often wind up parking in a compact space squashed between two SUVs.  Normally I'd grouse at the SUVs, but I can't really blame them since there's nowhere else to park.  About a year ago I backed out of a space in a hurry and completely scraped the side of my car on a pole, ripping off the side of my passenger mirror.  I replaced the mirror and kept the scrape.  I figured I would just do it again.  I haven't so far, but I believe the scrape wards off the poles.

I like the carpets.  Somehow they seem nicer than linoleum.  I like the art on the walls. My daughter comments to me about Babar.  Sometimes entire stories are told from those pictures.

I like how you can sit outside with your food, but I dislike how they are always doing construction.  All of Stanford is under construction for some reason all the time.  And I can't stand the constant noise.  The building was built what fifteen years ago, but it has the thinnest walls ever.  You can hear everything everywhere.  The construction, the people in the next room, the traffic outside.  My son sometimes manages to sleep when he stays there, but I never really managed much sleep there.

I love the kids' faces on the big posters that proclaim that Lucile Packard is the top hospital in the country.  It used to say top ten, but it slipped down to thirteen.  It's okay I don't hold it against you.  I've met a few of the kids on the posters.  Like all professional photos, the kids didn't look as good in person.  But they were still very cute.  It was both comforting to see them as real people and sad that we were there so often that we happened to meet them.

And I'm very glad we're visiting the place a lot less often.

What do you love and/or hate about Lucile Packard?