Discomfort with my values

I've been communicating with a woman and now her boyfriend on my sex support site about her various medical conditions and my concern for their child. As her boyfriend gets more detailed about her various mental illnesses (she is an anorexic cutter with borderline personality disorder who is now in hospital with myocarditis) - I find myself saying things I feel need to be said to protect the child, but feel very unaccepting of the mom and who she is.

Can a woman with a mental illness be a good mom? Of course she can.

Is this still true if she refuses to get counseling or medication to help her, and facing serious medical complications, and is having suicidal thoughts? I'm not sure, but I think not.

If you support a person's right to refuse to be mediated or to get counseling when they have a mental illness (as I do) - then why is it different when she has a child? Does a seven month old child trump what a mom thinks is best for herself?

Is it the responsibility of a woman who is a mother to subject herself to medication and counseling if she becomes a mom? If she thought it was best for her before she became a mom why is it different after she becomes a mom?

Is it ok to take risks when you don't have another person to be responsible for? but what if what the medications do to you is an unacceptable risk and you think they will make you a bad mother?

Is it OK for a mom to feel suicidal? Is it OK to be a cutter or a have a diagnosis of some sort and refuse treatment, but once you feel suicidal that means you have to accept help?

If you have a history of feeling suicidal, should you not be allowed to have children? Does everyone have the right to conceive, to parent? Is it unfair to prevent a person who hasn't done anything wrong except to happen to have a mental illness from having a child? Isn't that like punishing someone for what you think they will do rather that what they have done?

But then there is the child.

Do we as a community of adults have the responsibility to take educated guesses about how fit a person is to parent? If that is the case then what other people should we make educated guesses about? - women who are poorly educated? women who are racist? women who are unmarried? women with labels of mental retardation?

How do we know who makes a fit parent? I am sure there are women who fit every "typical" label that exists and can still not be good at parenting. Or can anyone be a 'good enough' parent if we all surround our children in our communities with support? Is it too much to expect any mom to do it all?

So is the answer for this mom I am trying to help is to say - it is your choice not to get treatment, it is your choice to live with your mental illness without medication, but if that is your choice you have to accept help/ intervention from the community that is concerned with the welfare of your child? I wish I knew.

Blogger Tag

I read David Hingsburger's blog and today he posted " I haven't heard of blogger tag and was surprised to be 'it'. The rules, yes there are rules for everything ...

Here's the rules.

1. Let others know who tagged you. (David Hingsburger)

2. Players start with 8 random facts about themselves. (see below)

3. Those who are tagged should post these rules and their 8 random facts. (here they are)

4. Players should tag 8 other people and notify them they have been tagged. (hmmmm)

Random fact 1: I hate summer. It is too hot and I can't take off enough clothes. If I was a man I am sure I would like it better - that or lived in a nudist colony.

Random fact 2: For the first 18 years of my life my favorite color was yellow. I hated pink. I think I loved yellow because it was gender neutral. When I discovered it was good to be a woman I began to love pink - and still do.

Random fact 3: I have an enormously long gum wrapper chain I made when I was 14. Over time it has disintegrated, but I still have around fifty feet of gum chain. I try to throw it away periodically, but, but, but....!

Random fact 4: My son's real name is not Teddy - but everyone has always called him that. He was named, when adopted, after my beloved dalmation-sheepdog, who I named after a character in Winnie the Pooh.

Random fact 5: When I was very small I was a redhead, then my hair turned yellow blonde, then it turned what we called dirty dish water blonde, then brown, and in my twenties started to turn silver. So I dyed it red. I stopped when I adopted my son - it didn't seem important anymore what color my hair was.

Random fact 6: I still have the first article of clothing I ever bought myself with my own money without my mom. I took the bus downtown to J. L. Hudson's. I spent hours trying to decide what this first all important purchase was going to be. It was a dark blue dress with a flower print, shirt sleeves, round neck, empire waist, and hung to my ankles. I still love it. And wish I could still wear it.

Random fact 7: I have a fireplace in my house that has been lit only once. I like the look of it, but it just never occurs to me that I want it lit.

Random fact 8: When I eat a Hershey's kiss, I love to spread the foil out and flatten with my thumbnail so there are absolutely no creases in it.

Now to figure out who I will tag!!!!!!

So far..... Pipecleaner Dreams, Pitt Rehab, This is Not my Country , Can't Teach This, & Wheelie Catholic. I'm surprised by how many people have already been tagged.

I'm rich because of Rich

I have a wonderful son, but I also have another wonderful man in my life. His name is Rich and he is a most extraordinary man. He has loved me for about 8 years. He lives about 700 miles due east of Teddy and me, but he is a part of my life every second of every day.

Our relationship is not typical in many ways. We spend part of most days on the phone with each other, or IMing, or emailing each other. Rich travels a lot for work and when not on the road works. He works a lot. Too much as far as I am concerned. But he makes an amazing amount of time for me - including a few days with me here and there.

This works out well for us. It might not work forever, but right now it meets both of our needs exactly. I can prioritize my son's needs and he can prioritize work. Together I think his work would suffer and eventually my son would feel left out. when we are together we are inclined to forget about the rest of the universe.

I would tell you Rich is one of the smartest men I know, but then his head might swell. So let it suffice to say that Rich is a geek extraordinaire. I am a closet geek and he has helped me in countless ways to take a few steps outside my comfort zone. Rich is part of the reason I am writing this blog, because he keeps telling me I should. So Rich this is for you!

Is forcing a test for Down syndrome a form of genocide?

If every women who gets pregnant must have a test to determine if the fetus has Down syndrome and the stigma attached to Down syndrome is so extreme that 90% of women who know they are carrying a child with Down syndrome abort - isn't making it mandatory that all women get this test a form of genocide? I think so.

Children are not cookies made of dough that we get to shape and decorate anyway we like. We are given a gift to raise. And too many people just don't understand what a tremendously good gift a child with Down syndrome is until they've gotten over the shock and actually come to experience it.

I was listening to this Harvard professor discuss happiness on NPR. And one of the things that struck me was that he has found that there is a genetic predisposition to happiness. There is a part of the brain that exhibits a change when a person is happy. I was wondering if they could find that people with Down syndrome have a predisposition to greater happiness because their brains are different as there is substance to the idea that people with Down syndrome are happier people.

I won't say my son is never unhappy, or not even at one time been clinically depressed - but overall he is an exceedingly happy person and when crisis strikes he bounces back very quickly. And from observing kids with Down syndrome these past 23 years plus - I'd say it is a pretty universal way of being. Now how lucky is that?

So given the real struggles we face as a family including a member with Down syndrome, wouldn't I really rather not have had to deal with Down syndrome if given a choice? An uneducated choice yes. But the person Teddy is - is all wrapped up in Down syndrome. You can't separate out those parts of him - take them away- and leave behind the person who is Teddy. I think he has unique gifts to give to the world that we would no longer have. He would be just a shell of the person he is today.

So why wouldn't that be OK? He'd probably be just as extraordinary, just in different ways. But I think we need what he gives. He makes sure people remember what is important. His most extraordinary gift seems to be to help people feel good about themselves. It was a gift I saw when he was just a toddler, and became most apparent other parents requested their kids be in the same class as Teddy in elementary school. I'll always remember the mom who said that her daughter felt so much better about herself because of seeing how Teddy was happy being who he was.

Accepting everything life throws at you and still continuing on with a smile (after a few minutes of anger/sorrow) is something I wish I could do better. Teddy forgives more quickly and completely than I can ever imagine doing. I simmer and rage and rarely completely forget. He just has a momentary explosion and carries on.

Teddy is unique. He is not just about Down syndrome. But there are certain characteristics - positive characteristic that are so prevalent among people with Down syndrome that they cannot be denied - or can they - thru genocide?

Illegal assisted suicide...in Oregon

You might think that legalizing assisted suicide in Oregon would end illegal assisted suicide - but it hasn't. Two nurses in Portland decided to help a woman to die 2 years ago, but it is only recently that the family was told. They thought she had died as a natural progression of her cancer. http://www.portlandtribune.com/news/story.php?story_id=118367242275954900

These two nurses decided that they didn't need to follow the rules about having a period of notification before it was done, having counseling, and most importantly have a physician be involved (as it is physician assisted suicide, not nurse assisted suicide). They had access and knowledge how to do it- so they did.

Now perhaps you think people should have the right to assisted suicide, but there is also a question as to whether assisted suicide was even wanted. Yes, the person in question was in pain, and was receiving hospice care, but the children of Wendy Melcher don't believe this was anything requested by their father (Wendy is transgendered). They believe their father would have told them and he didn't.

So what happened to these nurses who essentially murdered Wendy Melcher? So far nothing as it was only reported to the state two weeks ago - even though the Nursing board has known about it all along.

How do we protect our most vulnerable citizens from people who are over zealous to do what they think is right and now live in a state that gives them easy access to the tools to do it?

Why?

Why am I starting yet another blog? Well I guess I have decided that this is a more popular place to blog than the other two places I have begun blogs at. And perhaps I will stick with it longer as I read so many blogs here. But why blog at all? I have trails of thought I want to write down. It is not enough to think and spin - I want to leave a mark.

So for those who are curious enough to read, I suppose you might be curious to know who I am . I think of myself as a disability activist. Most of what I do every single day of my life all day long relates to disability in some way or another. Some may think it is because I am disabled, but it is not. Some may think it is because my son is disabled, and while that may be closer to the truth, it also is not.

How I came to be a disability activist can be attributed to a set of books that my elementary school deemed so important that every classroom had a set. They had gray covers and were biographies of important people. I read and reread only a few of them: Helen Keller, Jane Addams, Dorothea Dix, and Susan B. Anthony. These women became my heroines and led me to read voraciously about women in history. So why not become a women's rights activist?

When I was 14, I decided to volunteer at the local institution for adults and children with disabilities. My guess is that Dorothea Dix led me there. She worked to create institutions that were separate for prisoners and people with disabilities and mental illness. She had seen unspeakable conditions that people lived in and thought that people should be treated humanely. People should be clothed, have beds to sleep in and not be chained. Early institutions for people with disabilities as awful as they were - were much better than the conditions people lived in when housed with prisoners.

But it was Helen Keller who led me to the Annie Sullivan ward. Ms. Sullivan was Helen Keller's teacher and this ward for children who were deaf and blind and otherwise disabled were named after her. The ward was painted bright colors, but was starkly bare, except for the oak cupboards that lined the walls.

The 60 or so children sat or laid on the cold linoleum floors or were stood in standing frames. It was important that each day the children were dressed and gotten out of bed. (Why? I guess this was why they were considered progressive.) 3 or 4 workers took care of the children. First they needed to be cleaned up and dressed. This was no small feat as many of they smeared their bodies with their shit over night. Some were put on toilets to sit and sit and sit. Sometimes they would be forgotten and would be found after breakfast or lunch smearing the walls.

Breakfast and all other meals were the same. Carts arrived with food in metal trays, pulverized beyond recognition. Sometimes something smelled remotely familiar, but most often nothing like food at all. All of the children had to be fed. It was a race to see how quickly the children could be fed. The only break the aides would get was when they finished up quickly. So they raced without talking to the children or even letting them properly swallow. As much food rolled down their faces as slid down their throats. Children who didn't want to eat didn't. Children who were too much trouble to feed would be fed only as much as patience allowed.

Meals were the only punctuations to the childrens' days. There were no toys to play with. There was no television roaring. There was no music to muffle the sounds of the perpetual cries and shrieks.

Children lay on the floor in their food stained clothing until lunch time. If there was time between the inevitable diaper changes and placement in standing frame or other seemingly forward thinking torture chambers a few might get their clothing changed.

Lunch was the same as breakfast and dinner more of the same. After dinner all the children needed to be washed and dressed for bed. It all had to be done before the night shift came on. I usually went home when the night shift aide came on - if they came. Only one person was there for the 60 children thru the night.

It was a horrid, smelly place and yet I went every Thursday until I went off to college. I don't really know why. I felt I made a difference. I did things with the children no one else did. Maybe the kids got 5 minutes of my singing them a song or reading them a book and their lives were a little better. My mother decades later told me she hated picking me up because I stunk so badly. She never told me and I didn't know.

I went off to college and explored ideas I never knew existed.