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

6 comments:

Sally's Life said...

Thank you for this post.

Karen said...

I had post-partum depression after my second child was born. Years later, I was looking at her baby pictures and I had no memory of how beautiful my daughter was, because the depression took all of the feelings away. Fortunately, my depression lasted a short time and I was able to get help. But there's very little support for moms going through it...

Philip. said...

Thank you for writing such a moving, thought provoking post!

Philip :-)

Ballastexistenz said...

Does anyone else find the wording "depression in mothers with autism" confusing? I thought they were talking about autistic women who were also mothers, not mothers of autistic children.

Thida said...

Thanks for your kind comments! I agree the headline is a bit confusing.

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