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.

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.

But there's a balance there somewhere. I think that pressure to strive needs to come from within. Too much pushing results in a child who develops that late or who strives in the wrong ways. I read that cheating is rampant in Palo Alto schools. I think a large part of that comes from the idea that winning at any cost is good. That is not a lesson I want to impart to my kids.

Anyway at a certain point, I won't be around to push them anymore. Nor will I be around to tell the teacher their rules are stupid. Sometimes one just have to follow stupid rules. That's life. A lesson my children need to learn. Ever dealt with the INS? I would rather my children figure out these important life lessons in grade school as my husband did, than in college as I did. My parents and grandparents imparted a love of learning through their own actions - their love of travel books and science.

My son has a September birthday. He has multiple delays at the moment due to spending the first 18 months of his life on steroids and going in and out of the hospital. I'm not sure if he'll be ready for kindergarten or not. He's only two, so it's a long way away. However it will based on if he is academically and socially ready.

I do agree that the cutoff date for Mountain View (Dec 2) is rather late and I wish the US had a more standardized educational system. I quite understand a parent choosing to delay a child who was born later than September if they're thinking about moving or if they simply aren't ready. However, when I hear about perfectly typical kids born in August or even July delaying Kindergarten, IMO it gets a bit silly.

I wonder if these kids are being taught the same lesson my parents unconsciously taught me. Getting along with your peers isn't important. Getting good grades is all that matters. I rebelled against this message by not getting the best grades I could. My parents upped the pressure. Yes I did fine. But I think I would have done fine anyway without the pressure and pushing. My parents now tell me this. I believe them.

Of course I do care a lot about my children's future. But as I learned from my son who is one of the hardest working people I know. Success in life ironically comes from failing. My son almost failed to live.

I feel like as a culture we're afraid of failure. We're afraid to let our kids fail lest it scar them. Parents either avoid competition altogether or push their children to always succeed. Parents tell me if my child doesn't get into X preschool or Y school they will fail in some way. My parents failed me in a sense. They weren't perfect. But I turned out just fine.

One of the great things about the US is that you get loads of second chances. You can go back to school and/or change careers. The apocryphal story about Einstein is he had speech delays etc. I think what's more interesting is that he dropped out of secondary school and also failed the entrance exam to go to college. He went to Switzerland to attend another secondary school.

Inadequate use of technology costs lives

With great sadness, I just read a news headline 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.

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.

Little T is talking now

Sorry for my long silence. I broke my toe. I take Vicodin at night. I'd love to be House but I can't pop it without water. I can also only handle one at a time. Otherwise the tale about my toe is pretty boring except that I broke it tripping over my daughter. I have borderline osteopinia. A lesson to take one's calcium.

Also several pregnancies of friends and family brought up painful issues for me. I'm not ready to discuss them here in "the open." and frankly some of it is not my tale to tell. I may discuss it at a later time when I can separate more and talk exclusively about myself.

In the meanwhile my life goes on.

My biggest news is I have two bonafide talking kids now. Little T says two word phrases all the time but he remains laconic. He says one word if one word will do and then brings out another word if the first word isn't clear enough. With one exception.

For example he says "Songs" C starts singing to him. He says "Songs phone." He wants C to play him songs on his phone/mp3 player.

He says two three phrases. "Where Daddy/Mama go?" and "I love you."

I used to be the one he talked to least but in the past week he's discovered that talking is the way to my heart. He always has greeted me with "mama!" with great enthusiasm. Now he says "Mama, bus" "Mama, woo woo (his word for train)." Anything to get my attention. Daddy is not addressed in this way. Daddy is sometimes called for plaintively when not there "Daddy!" But Daddy is used for exacting requests "Where woowoo(train) plate?" If Daddy doesn't produce said plate he screams

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.

Kind blog but not any kinder

After some thought, I decided to join Karen of Chookooloonks in designating this a I hope you find what I say occasionally insightful. I don't promise to be uplifting since my life is sometimes sad, and I also think that's a adjective others give to you rather than one you can give yourself, but the sign didn't say uplifting. It said "kind." I suppose I feel kind is also an adjective that others give to you as well.

On first impression, I don't think I come across as kind, so I'm not sure this blog comes aross as kind. I'm often preoccupied. I hvae a sharp wit. I'm slow to warm to people. But yes, I suppose I am kind. I help people. I used to do more when I could do more. I'm the sort of friend that people drop in or call when they're having a really bad day, even now. I sometimes say nice things, which are true, and always seems to startle people. But I'm the Elizabeth Bennett type. You'll have to read a fairly long way into the story to find my acts of kindness.

I've always been very careful in this public blog about what I say about other people, both those I know and don't know. Too many people have said cruel things to me either intentionally or unintentionally on my journey as a disabled person, especially, and sometimes as a woman of color for me to want to be cruel to others. Anyway, I find it's not very productive for me personally. It's more of a selfish thing. I'd rather devote my energy to people who are actually nice to me.

But still I'm English and I'm not entirely comfortable with the label 'kind'. So mushy. A part of me says stubbornly, "I absolutely refuse to blog any differently." But I don't think I have to. And the flower is very pretty.

Laughing in the hospital

Little T literally laughed in the ER. You'd never know from this picture that he was here in the hospital recovering from a life-threatening bacterial infection back in July 2005. He turned blue in my arms at home twice. He coded twice at the hospital. Teams of doctors rushed in and saved him.

But a few hours later my sister held him and he laughed again.

I no longer worry each day whether he'll still be here in a concrete sense. And I've been bogged down a lot by the constant grind of day to day care of a special needs kid. I've also been feeling depressed lately due to the medication I've been trying from my movement disorder. But this photo really lifted my spirits. It reminded me how far we've come and how he still laughs with that same wide open grin. I hope it lifts your spirits too.

She's Such a Geek now available in bookstores

She's Such a Geek is now available in stores. I just saw two copies in my local book store. It's also available on Amazon. 

My essay "Gimp Geek" appears in the second section of the book right before an essay by Violet Blue the sex writer for the Chronicle.

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 a photo with me in it launched our local paper's fashion section. 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?

Crossposted in Silicon Valley Moms Blog