Special K's first loose tooth

Special K has a loose tooth. I'm afraid that C and my initial reaction was "Isn't she too young to have a loose tooth?" A little anxiety as I google "age lose teeth"

The first entry was alarming about a 5 year old losing her teeth and the answer was "Something's wrong with her teeth. Check with a dentist."

Second entry was more soothing and said kids lose their first tooth about 5-6. Special K turned 5 in April. And it's from Parents magazine which would seem a more reliable source.

So no need to panic.

But I still think she's too young.

For her first couple years I was in such a hurry for her to grow up. Now I'm constantly thinking "Slow down! It's too fast!" But of course she grows at her own pace.

First swimming lesson

Today Little T had his first swimming lesson along with Special K. He wanted me with him in the water. I forgot my bathing suit. So I just stepped in with my clothes. He kicked a lot and had a wonderful time. Special K had initial trouble with the kick board but the lessons from last summer seem to be coming back.

The pool was a warm 90 degrees. Outside was alternately warm and freezing when the wind blew.

I climbed out soggy and wet and a couple people stared. There wasn't really anything to stare at since I fortunately wore clothes that were not see-through when wet. Wet clothes are not a big deal since I was going right home. Slightly cold though.

Somehow this seems a strange metaphor for my life. I am never quite prepared and yet I plunge in anyway.

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".

Crossposted to Silicon Valley Moms Blog

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

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.

Crossposted to Silicon Valley Moms Blog

300 Calorie meal

After looking at photos of 300 calorie meals I think that's about how much I naturally eat at breakfast and lunch at home. That's about what my mother served me. Other than pregnancy the only time I've gained weight was when I dated someone who was fat and we ate out a lot. Then I figured out I didn't need to eat the entire portion of a huge American restaurant meal.

Eating a restaurant meal portion makes me feel horribly full but it often sneaks up on you. So I didn't feel extremely full until after the restaurant. I heard a fat person on Oprah say that she loves that feeling when you feel the need to loosen your pants and if you eat any more you might be sick. I really hate it.

Now at a restaurant I just tell myself as the plate is being put down "I can eat only half" of however much seems like a reasonable amount.

We have started eating out more because restaurants do serve higher calorie items that Little T likes like "burger fries." I eat less because the food has higher calories and therefore makes me feel more full.

Like today we ate at a deli. The bread is the same I would eat but a lot more salami and cheese and little mayo and mustard than I would eat on a sandwich at home. I ate half of the sandwich plus one bite. I also ate about 7 fat fries. I still feel full 2 hours later though not nauseatingly full. My husband ate the rest of my sandwich and part of his meal and some fries. He is gaining weight on this "new diet."

I have read research that people have a "set weight point." I think that's actually a simplistic answer. I think rather people have differing

• tolerance of fat - I just can't eat too much fat. It makes me feel full.
• the way foods taste aka food preferences - I can taste red no 5 and other artificial ingredients. They taste a little weird. I can't stand the taste of diet coke. I naturally prefer fresh meat and vegetables cooked simply. I hate preserved things. I have a friend who is the opposite and would choose diet coke and cheezits over stirfry any day of the week. I think McDonalds food tastes gross.
  
• amount of food needed to feel full - my husband clearly has a higher set point than I do
• feelings about being over full - my husband and I both hate it
• rate of conversion of excess calories to fat - I do not gain weight easily. I think this also varies by body part. Any weight I do gain goes to my belly first then my breasts and then my face. My arms and legs remain the same. To gain weight during pregnancy I had to force myself to eat several times a day. Not eating caused my nausea to be worse. In the first part of both pregnancies I actually dropped a few pounds.
  
• rate of conversion of fat to muscle/energy - In most areas of my body I am pretty static. I still have a fat belly from pregnancy. Otherwise I have dropped back down to my prepregnancy weight. I think I could work really hard to get rid of this belly fat but it would be very difficult. It has slowly gone down over time but very slowly.
  
• rate of metabolism - my metabolism is pretty high. It has slowed down since I was a teen and I think pregnancy slowed it down further.
• amount metabolism is affected by exercise and amount and type of exercise needed - I find I need to walk everyday to be happy. Faster exercise also makes me happy but I get "the runner's high" or feelings of well being just from walking. I walk fairly fast on my own but often I walk with kids. However when I can't walk due to injury I gain a few pounds which I drop after I start walking again. Oprah says she needs to work out an hour a day to keep her current weight. I just don't have time to do that.
• ability to do a task over time that has long-term benefits - My ability to do this is low if it's just for myself but I'll do anything for my family.
  

I think people who are fat most likely have the "gain fat" side of many if not all these factors. Both of my parents come from a long line of people who were well-fed their entire lives i.e they lived in prosperous farming communities. With a constant supply of food the body reacts differently and there are different selection pressures.

Few people except Jared Diamond talk about how a culture's access to food resources affects its ability to expand. I would say that coming from a heritage that includes low and inconsistent access to food promotes genes that all lead to being fat in a culture that has consistent access to very high calorie foods.

I guess what I'm saying is yes my observable weight point is set lower than many Americans and I exercise less than the recommended amount. I don't do a lot of hard exercise like going to the gm. In fact when I did the most time at the gym I was also gaining weight from restaurant food. My BP etc is all low. It's just from following my natural tendencies.

I think someone like Oprah who comes from a background of slaves and before that prolly hunter-gatherers has all the factors to make her fat. With a lot of hard work she overcame her natural tendencies to get to a lower weight. I think other fat people could do the same if they had the resources and time of Oprah. Some fat people do and some don't.

But I think saying "everyone has a set weight point" or "everyone can be an ideal body weight if they only followed my lifestyle changes" misses the point.

At this point in my life if I had to do what Oprah did to maintain my current weight I would be fat. I don't have the time to exercise an hour a day or rather I feel my family needs that hour more. I can often walk with my family. I just eat what I like when I like. I don't spend time craving foods that are bad for me. I don't deny myself much in the way of food. Yes I love chocolate but in moderation. But I also don't think I need to be worth a billion dollars to have Oprah's genes and not be fat. I just need the time and resources.

At my current socioeconomic level I guess I could force myself into weight loss lifestyle changes if both my children were functionally school-age. Not true for me now. I don't know if I would want to. I prolly might if I was convinced I would die too young. I dunno.

Becoming more like House MD

I want to live in the world of House MD where most medical mysteries are solved in an hour. I'd like to think of myself as Cameron. Though to be honest I'm more like Foreman. I'm a scrappy minority. I really do care but in a medical crisis I'm very detached. My exploits in high risk medical deduction and bizarre medical conditions are confined to my son. But that's enough for me.

But sadly my life resembles House more than any of the other doctors. I deal with constant pain every day although it's in my wrists and not my leg. I took Vicodin for a few months when I broke my toe. But I'm off it now. House says "antidepressants make me fuzzy." Vicodin makes me fuzzy.

But without Vicodin, it seems I must add a new way to identify myself as House. I must use a cane. I doubt I'll go for a cane with flames as House did. But my cane will be cool in some way. I'll show pictures when I've chosen it. Like House, I need a cane to help prevent myself from falling.

Prekids I sprained my ankle about once a year and limped around on crutches or a cane for several months. Annoying but manageable. My neurologists told me that "hypermobile ankles" are part of my rare movement disorder, myoclonic dystonia. I just figured it was something I was stuck with like the jerking.

Then my son started receiving regular physical therapy and then finally walking at 2 years old. And I noticed that like me, my son had moments of great balance and then he'd suddenly fall down. At first falling down involved "a lot of head hits ground". Any sort of hit on the head resulted in massive egg bruises on his forehead due to low platelets. His hematology doctor said he was okay falling down walking, but if he fell from any height he ran the risk of brain bleed. Needless to say I watched him very very carefully.

I developed a sort of safe distance to watch. If I hovered over him he got annoyed. I and his nanny noticed he fell more when tired. I also noticed he fell when distracted or when moving from one surface to another. That's exactly how I stumble and sprain my ankle.

Prekids I used to hike on rough terrain and occasionally ski. Never a sprained ankle. I was being careful. I sprained my ankle or torn liagments

• stepping down from my house to my garage
  
• walking onto fake rocks near the Stanford barn without noticing
• tripping over a gouge in the sidewalk shortly after receiving a flu shot
• stumbling while pregnant - okay I think being clumsy comes with being pregnant
  

I broke my toe tripping over my daughter while my ankle was still recovering from a sprain.
I stumble a lot less with my son, because I have to be a lot more conscious of where he's going. I have never once stumbled while holding my kids.

But Little T's rapidly moving out of the "must watch with constant vigilance or he will hurt himself" stage. His platelets are normal. He has perfected the trot. My body already knows I need to be less careful. Today I stumbled and knocked against him and he merely swayed a little. A few months ago he would have fallen on his head. I was so proud of him. And sad that he needs me less in that physical way.

So I need something new to watch out for. A new baby would solve the issue but has other costs. We're fine with two kids. A cane will do. It will "provide additional sensory input."

I'm on the waiting list for a service dog from Canine Companions for Independence. So at some point I will have another creature to look after. One that I will always need to keep track of. Then I can ditch the cane and I will be less like House again. Being a big fan of House, I know that House kept a dog for a couple episodes. A very poorly behaved dog that chewed up everything even his Vicodin. House could probably use a service dog, but I'm not sure which organization would take him.

Why I love American Idol: an embodiment of American values

I'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.

The week Sanjaya 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

Last 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.

Migraine bright burning spikes in my brain

Yesterday I experienced the worst migraine I have ever had. I explained a migraine to my husband as "super hangover combined with the nasty aspects of being drunk". At least I often feel and sound incoherent and it's hard for me to move without throwing up. Replax didn't seem to help much but Replax and Ibuprofen got me to the point where I could stand the voices of my children.

I put them in front of the tv downstairs and I moaned upstairs until my husband came home. I completely missed my daughter's potluck for incoming Kindergarteners. I'd been looking forward to it.

Little T expressed him so loudly to my migraine ears. I asked him to speak more softly. "No speak softly." he screamed at me and bright burning spikes flashed in my brain. I chuckled a little that he chose now to express himself now. That hurt my head too. The day before I'd half written a post about my concern about his lack of expression. Now I wanted him mute again.

I asked Special K to whisper and she was so sweet. I also asked her not turn the light in the bathroom that shone so brightly in my bedroom. My husband turned on the one further away. Even in the middle she remembered. She came and whispered and turned on the further away light.

Just now I saw a little shooting star on my computer screen. So pretty but a warning sign. So I must get off the computer now.

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

A 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 sufferedin 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?

Will be crossposted to Silicon Valley Moms Blog

Gratitude journal

I've been trying to think what to do with this blog. I have my LJ. It's where I started and where I feel most comfortable. I have a little community there. Here I don't...at least not yet.

But I realized this blog has a place. I tend to record more negative things than positive because I tend to focus on the positive. I record the negative so as to lay my burden down. I think this gives a skewed version of my life. I don't care so much about that since no blog can capture the complexity of a person's life. What I do care about though is that I don't have the greatest memory. I want to record the everyday things that make me happy.

I also find myself falling into the pattern of my parents. When people ask me about my kids I talk about problems or funny things. I find it hard to say to others that I really really really adore my kids although I tell them all the time. I guess it's a lot better than the other way around. So in this blog I will try to record the things I'm grateful for.

Thanks for Autism Awareness month

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 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.

Crossposted to Silicon Valley Moms Blog

Wow I got an award

Thanks Susan Ettinger! Susan of the Family Room gave me a Thinking Blogger award for my post on Silicon Valley Moms blog called Mommy Wars miss the point I link it because the comments are interesting.

Mini-vain and ashamed

This 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?

Mommy Swine

A 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 Silicon Valley Moms Blog

Sorry for the silence

Lots of things been going on difficult and good. My toe needed to heal. I can walk ten blocks now. Lots of changes with Little T that are mostly good, like growing up, but like many thing with a special needs child, they're different and unexpected and uneven.

So I stopped writing publicly. That meant blogging here since I consider this a public blog. But I'm back again. Hello! If anyone is out there, please introduce yourself, so I know I'm not just writing to myself. :)

What a difference a year makes

I wrote this for Silicon Valley Moms blog

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.

Here in the sand, nothing goes as planned

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.

The kindness of strangers

Yesterday 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.

Planet Earth needs a star

I'm really ticked off. This wonderful show called Planet Earth will air March 25 on the Discovery Channel. It's the American version of an English show 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.