Monday, April 30, 2007

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

Blogging Against Disablism Day, May 1st 2007A 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

Friday, April 27, 2007

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' 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

Thursday, April 12, 2007

Wednesday, April 11, 2007

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?

Monday, April 09, 2007

Mommy Swine

Joshua BellA 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. :)

Wednesday, April 04, 2007

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.