I've moved!

Over to Wordpress I go! It was nice here, but I decided I can do much more with a Wordpress site. So come see! http://www.katrinadisability.info/wordpress/

Another Terri Schiavo

My friend who I have written here now must be named. Sylvia Huttel. She has been in and out of a coma for 3 months. She has had moments - as late as last week where she has squeezed the hand of her former fiance and smiled when told about the antics of her 9 month old daughter.

Up until last week, Sylvia ex-fiance has been making all the medical decisions about her care. He has approved several brain surgeries, heart surgery, and leg reconstruction. He was told last week that the time had come to consider removing the machines that kept her alive. He has been struggling with what to do. No decision had been reached.

But this past weekend Sylvia's parents said that he would no longer be making any medical decisions. He would also no longer be able to visit her. They claimed he was a detriment to her. They washed their hands of their child many years ago - and suddenly now they have provided legal documents that they will be making all future medical decisions.

Today he was told to say goodbye as the machines are going to be turned off and her feeding tube removed.

I am now going from a sort of passive supporter of him doing what he thinks is best to deciding I must fight for the right of my friend Sylvia not to die of starvation and torture.

I don't know what I can do. But I am going to do my damnedest to prevent her from being tortured to death. Please contact me if you have any ideas for support. Please contact me if you are fluent in German and would help me research her rights under German law.

Sign the letter to the APA - next post down

You can if you prefer, just post a post here, if you would like to sign onto the letter. Please include your name and your affiliation to the disability community, if any. I signed it!

A Call for Ethical and Unprejudiced Leadership and Practice in the Field

A Call for Ethical and Unprejudiced Leadership and Practice in the Field of Psychology

An Autism & Mental Health Community Letter
October 10, 2007

This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 "Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment" (hereafter referred to as 2006 Resolution), and the 2007 "Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment and Its Application to Individuals Defined in the United States Code as "Enemy Combatants"" (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged "Enemy Combatants," or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.

Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.

The use of the phrase "effective treatment," does not make such techniques humane or acceptable. Furthermore, attempting to justify them as "treatments" of "last resort" may not be completely accurate. It has been clearly demonstrated that positive behavioral approaches, based on a careful analysis of the functions dangerous or disruptive behaviors may be serving are as effective and more enduring than behavior change techniques based on pain and fear. JRC uses a device that they call the Graduated Electronic Decelerator (GED), to deliver painful electric shocks. Reporters, legislators and others who have experienced the 2-second shock from this device describe it as incredibly painful. A report from the New York State Educational Department noted that JRC was not only using electric shock for dangerous and self-injurious behaviors but also for behaviors that are benign or idiosyncratic such as "nagging, swearing and failure to maintain a neat appearance," or "slouching in a chair." The director of the Judge Rotenberg Center testified at a legislative hearing that one student received 5,300 electric shocks in one day. In his testimony, he stated that over a 24-hour period, this student, a teenager who weighed only 52 pounds, was subjected to an average of one shock every 16 seconds. During some periods, the student was automatically shocked every second if he lifted his hand off a paddle. A copy of the New York State Report can be found here: http://boston.com/news/daily/15/school_report.pdf and a myriad of additional information on the school and its practices can be found by googling the Judge Rotenberg Center.

Proponents of behaviorism have voiced their opposition to these practices. Although the Director of the Judge Rotenberg Center often defends his practices by stating that he was trained by B. F. Skinner, Dr. Skinner made it very clear that he did not condone such practices. At the age of 83, he was interviewed by Daniel Goleman of the New York Times. In an article published August 25^th, 1987, titled, "Embattled Giant Of Psychology Speaks His Mind," his view is stated.

“The use of punishment is another issue Dr. Skinner still feels impassioned about. He is an ardent opponent of the use of punishment, such as spanking, or using ''aversives'' -such as pinches and shocks - with autistic children. ''What's wrong with punishments is that they work immediately, but give no long-term results,'' Dr. Skinner said. ''The responses to punishment are either the urge to escape, to counterattack or a stubborn apathy. These are the bad effects you get in prisons or schools, or wherever punishments are used.'' The complete article can be viewed here:

http://query.nytimes.com/gst/fullpage.html?res=9B0DE3D6143CF936A1575BC0A961948260&sec=health&spon=&pagewanted=print

The 1965 experimental research of O. Ivar Lovaas, Benson Schaeffer, and James Q. Simmons, conducted at the University of California, Los Angeles, concluded that electric shock applications did not have enduring effectiveness. In conclusion, they questioned the need for shocking children with Autism by stating, “A basic question, then, is whether it is necessary to employ shock in accomplishing such an end or whether less drastic methods might suffice.” (Journal Of Experimental Research in Personality 1, 99-109 (1965))

A recent Mother Jones article about this institution began like this, “Rob Santana awoke terrified. He'd had that dream again, the one where silver wires ran under his shirt and into his pants, connecting to electrodes attached to his limbs and torso. Adults armed with surveillance cameras and remote-control activators watched his every move. One press of a button, and there was no telling where the shock would hit—his arm or leg or, worse, his stomach. All Rob knew was that the pain would be intense.”(Mother Jones, August 20, 2007). A horror from the Abu Ghraib prison scandal? No, torture carried out in the name of treatment, right here in the State of Massachusetts, against the most vulnerable of our young people -- and designed and implemented by Psychologists.

It is additionally noted that programs that are built around scientific knowledge and principles will generally welcome peer review and a continual improvement process. Currently and historically, JRC practices are remarkably deficient in these areas. As leaders in the field of psychology, and as professionals who are intolerant of torture, APA has an opportunity, if not an obligation, to demonstrate leadership in this matter. Please consider the following facts and arguments.

Section 1 of the American Psychological Association Code of Ethics, creates a standard of excellence in regards to the personal accountability of psychologists to their Code of Ethics. It also establishes a means for resolving professional ethical issues between psychologists and with organizations with which Psychologists may be affiliated.

Sub-Section 1.05 of the Code of Ethics covers the topic of Reporting Ethical Violations. This sub-section related to reporting, places a grave responsibility upon APA members to report apparent ethical violations that have "substantially harmed or are likely to substantially harm a person or organization." This reporting "may include referral to state or national committees on professional ethics, to state licensing boards, or to the appropriate institutional authorities."

Within the 2007 Reaffirmation, reference is made to the 2006 Resolution, stating emphatically that it is "a comprehensive and foundational position applicable to all individuals, in all settings and in all contexts without exception." We are in agreement with this position.

We are pleading with APA psychologists, and all psychologists who independently and voluntarily follow the APA Code of Ethics, to consider that the 2006 Resolution is inclusive of all human beings. We ask that it be applied toward those who are receiving treatment/services related to symptoms associated with autism, developmental differences, and mental health challenges, including such that may cause or contribute to self-injurious behavior. This letter is an earnest appeal to APA leadership and all professionals in the field of psychology to demonstrate ethical practices and adhere to the principles of the 2006 Resolution and the 2007 Reaffirmation in opposing the use of skin-shock and food deprivation that are currently being administered as "treatment" for self-injurious behavior, aggressive behavior, and other behaviors that are being considered as precursors. Skin-shock or food deprivation under any other context, or being administered to any other population segment would be considered an inhumane form of punishment that in reality is truly torture. According to the 2006 Resolution, there can be no exception for this type of degrading treatment.

Although there are some within this mental health population segment who are able to communicate how they have been "substantially harmed by a person or organization," there are many others who are unable to do so. Even those young people with the ability to communicate how they are being harmed are virtually unheard. Regardless of the individual’s ability to communicate and describe torture and its physical, mental and emotional effect upon them, this type of "treatment," is still inherently wrong. Is it not the responsibility of a professional or any human being to take action when they personally are aware of acts that are inhumane and degrading forms of torture?

At the JRC this "treatment" is being authorized under court order. While Judges may have extensive expertise within the framework of law, they are reliant upon the testimony of experts (in these cases, Psychologists) to assist them in making decisions. Experts within the field of psychology need to see an example of leadership from organizations such as APA. Good leadership provides guidance and constraints in all areas that are conducive to professionalism and best practices.

In conclusion, we are respectfully appealing to APA members and leadership on the basis of professionalism and unprejudiced application of your own code of ethics, and consistent with your 2006 Resolution and 2007 Reaffirmation, to formally and specifically declare your position regarding the use of skin-shock "treatments," food deprivation, and any other aversives that inflict pain or deprive basic human rights at JRC or elsewhere. We are calling upon APA members to apply the Code which condemns the treatment that is currently taking place at JRC.

We respectfully request that the APA send this letter to its members, post it on their website and/or publish it in a newsletter or other publication that reaches its full membership. We request that the APA as a professional organization, and as professional individuals actively and vociferously advocate for best practices while opposing that which is torture. We furthermore request that the APA, as an organization, make a formal and specific declaration of its stance in this matter and exercise appropriate discipline, thereby demonstrating that the Code of Ethics will be applied without prejudice. Your example in this will be a voice of hope for those who have been locked away, subjected to daily torture and unseen and unheard for too long.


Written and Presented by:

Derrick Jeffries

Person with Asperger’s Syndrome

Nancy Weiss

Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for

Disabilities Studies, University of Delaware

The following individuals and organizations endorse this message:

To be added to this list, please submit your name and/or the name of your organization to Derrick_Jeffries@Bestmail.us . Individual submittals should include an identifying title, such as parent, person with autism, Ph.D., concerned citizen, etc. For organizations, information must be submitted by an officer of the organization. Posting this letter on websites is encouraged; however, we do ask that you send us an e-mail address where updated copies can be received. It is our intent to update this section of the letter on a monthly basis for a reasonable length of time. Updated copies will also be sent to the APA.

For those interested in contacting APA directly, please consider sending mail or e-mail to:

Lynn F. Bufka, Ph.D.
Assistant Executive Director, Practice Research and Policy
American Psychological Association
750 First St., NE
Washington, DC 20002

E-mail: LBufka@apa.org

Desperation

I am so scared and worried today. My friend in Germany is back in her coma and the doctors aren't very positive about the outcome now. And her boyfriend, who I have become very close to is giving up - not on her - but himself. He has dropped out of school. He is talking to counselors about giving up his daughter for adoption. And he talking about fixing all his problems for good. He hasn't said the word suicide yet, but I hear it none-the-less.

He isn't disabled, but his baby's mother is. He is so desperately in need of help. He is 22 and alone in making life and death decisions about his girlfriend. He isn't handling it well. Right now the only things that keeps his girlfriend alive are his decisions to keep providing the machines that keep her alive, and the medication and his holding her hand that keeps her lucid when she awakes. Without him, she will die. Because of her, he may choose to die. A little girl may lose both her parents because we don't offer enough support to people who are in desperate need of support.

I feel so helpless. There is nothing I can do but wait for the next email and hope I have something helpful to say.

Prego!

My friend is out of the coma ever so slightly. She has come out of it and gone back in. She has refused medication she was getting while in her coma and then become paranoid and hysterical. When they calmed her down she went back into the coma. They have turned off all the machines that have been keeping her alive. I never thought I would be for doing this, but I am. The doctors said it was time to find out whether she wanted to fight to live or not. It's not clear yet what is going to happen. She seems to be living in limbo. Sometimes I wish one thing would happen and others times I wish the other. I wish she could be who she was before, but since I don't think she will, maybe it is best if....oh I can't even write the words.

In the meantime her daughter has spoken her first word. I am so excited. Her first word was prego - which is please in Italian. Her dad is Italian. I think it is such a wonderful first word. My first word was cookie. Prego is such a polite word - a sign of good breeding - a sign that she has a father who truly respects her as a person. Please let her have the wonderful life she deserves!

New family members

In our house live Teddy and me. Teddy lives downstairs in his own apartment. Opal and Jack also live with us. They are 2 rabbits. They were supposed to live with Teddy, but I wasn't sure they were being kept clean- so they live upstairs with me.

Opal and Jack are supposed to be siblings. We got them from a rabbit rescue. Don't trust a rabbit rescue to know what they are talking about. Our twins were the same size when we brought them home. But Jack started to grow and grow and is now about 3 times the size as Opal. It turns out they are the same breed - just one is full-size and the other is dwarf.

Well now we have two more family members: 2 ringneck doves. I'm not sure their names might not change - but they are Irma and Flora at the moment. Named after my grandma and her sister. My son adored them both and think that the doves are from heaven.

So the doves are exploring the house and we are trying to figure out where in the house they will live- what they eat - etc. We are also wondering what the rabbits think of them and if they might turn out to be friends.

Update: they have been with us for less than 18 hours and we have eggs. I can only assume the eggs were made before they came to live with us and these are truly 2 girls.....but just like rabbit rescues can be wrong - so can dove owners.

Update: They are ignoring the egg. There is only 1 now.
Opal, our rabbit has died. Old age maybe. Shock from seeing the birds? Teddy is heartbroken. Jack seems sad. We introduced Irma to Jack. They didn't seem to mind each other. But Jack couldn't get in his cage fast enough when the introductions were complete.

Bad Mom

I know we all have our days and today I had mine. Teddy was going to a football game and was supposed to bring 2 bottles of Mt. Dew and 2 of Pepsi as his contribution.

I had been to the grocery store the night before on my own - and the big bottles were up high in a new contraption that I couldn't reach. So I just figured we would get them today. So we went to Kmart because Mt. Dew was on sale - but we went to a Kmart that had just one scooter and it was in use - so we kept going. I sent him into the Kroger's on his own with strict instructions as to what he was to buy.

So he came out with 2 Vernor's , 3 Pepsi, and 2 Mt. Dew. So I screamed and hollered about buying 4 not 7 and what was he doing. Couldn't he count to 4? Well he said he bought the 2 Vernor's for me because he knew I didn't feel well. Well I said I didn't ask you to buy that I said 4. Why did you buy the extra Pepsi. He said I wanted one.

Well I talk all this talk about a self-determined life for him - and he was very much thinking his own mind when he bought all this pop. SO why did I lose it?

Teddy knows.

One day a month the mother from hell appears. So, he just listened and ignored me. A few hours later I apologized and said I didn't feel good, but it was no excuse. He said it was OK and did I want some Vernor's? I said yes please - and after 15 minutes he appeared with warm chocolate chip cookies (thank goodness for premade cookies dough) and a big glass of cold Vernor's.

My sweet angel.

Hanging on

My friend is still in a coma. Her fiance is struggling with what to do about her life. It is hard to be a support person to help a person make their own decision when you have very very definite ideas about the choice you think they should make. Or at least you did for awhile.

She has two doctors - one which says pull the plug, she will never recover and the other who says it is too early to tell, she is still improving. He says in one minute he is so tired of waiting and not knowing and having her not react to him at all - and then he says he will hold her hand forever waiting for her to wake-up.

His life is on hold while he waits for her to wake up. I want to help him move on with his life without feeling as if he is abandoning her. He worries if he is not there everyday by her bedside it will be his fault if she dies. But he is 22 and college is important. He needs to make money to support himself and his daughter. He can't be there everyday and give their 8 month old the attention she needs.

So does a point come where because her quality of life has to be set aside because two other people - the only other two people who truly care if she lives or dies - can't spend much time with her- so she shouldn't live anymore? We don't know what, if any, awareness she has - perhaps it doesn't matter to her that no one visits her for several days. Perhaps she is healing and has no sense of time. Is her life any less valuable because she spends days of it alone?

But I also wonder if the reason she doesn't wake up from her coma is that she doesn't want to. She, after all, attempted suicide. Could living be torture for her? She can't get the therapy she needs now to want to live. If she could - would she say pull the plug? We all have the right to refuse treatment, but she can't refuse it. Is it wrong to give life sustaining treatment to a person who has attempted suicide and failed?

I don't know anymore. I was sure before that she should be given as much time as she needed to recover. Months, years, whatever it took. But now I wonder. Is she hanging on or is she being tortured by being forced to live?

We can only guess.

Note: Everytime I post about these friends - something new happens. Well about the time I was writing this she woke up again. Still not communicating, but her eyes are open and she is tracking things.

End of day - she is moving a little, talking a little - things are looking good.

Where will he be?

Where will my son be when I am gone. I've thought about that for 24 years and hopefully will think about it for 24 more. I have tried to put everything in place so that he can live a life as independently as possible. But he will still need support - a lot of support. Who will give it? Will he end up in a horror of an institution like where I worked when I was young? Will he lose all his freedom and be forced to live in a group home that does not respect his individuality? Will he have as I have planned a caring person in his life who will live in what is now my part of the house and be my replacement? But can I be replaced? Can any parent be replaced?

It would certainly be much easier to replace a person with the skills necessary to do the things I do if the Community Choices Act was passed. The passage of this act is absolutely essential to the youth of today as they will in the future be those who need support and have lived a fully included life and don't want that to end - ever. But the way we fund health care now - that can certainly not be guaranteed. It doesn't matter that if in my son's case and in most, but not all others, it would be far more financially efficient to provide the services he needs to live at home.

I need to feel that his future is secure. That he will have the life he wants. The life he deserves.

Does a worthy punishment exist?

Workers at a trucking company in East Butler discovered a body inside a burned out dumpster Friday evening. Police say the condition of the body is such that they can't even tell if it is a man or a woman. Police are asking anyone with information about a missing person in the area to call them at 724-284-8100.
_________________________

Ritzert was forced to wear the lighter fluid-soaked T-shirt and was set on fire as he lay in a bathtub, police said. After Ritzert lost consciousness, Caldwell kicked him and put his foot on Ritzert's chest and neck for five to 10 minutes. The defendants (Tim Caldwell and Melissa Adams) then took Ritzert's body to a trash bin, where they set it on fire, police said.
http://www.yorkdispatch.com/pennsylvania/ci_6870623

___________________

Who does things like this? Where is the outcry when they do?

I read about this some time ago - 3 people began to live in the apartment paid for by social services with Ritzert about a year before the murder and refused to leave. Jason Michael Ritzert was a part of what we desperately want with the Community Care Choices Act. We want the right to live in the community. But we want that right with the support services we need we live our lives in freedom and safety.

Things equally horrible happen in institutions. They happen under the watchful eye of the same people who ignored Jason.
_______________________
Summary of Rosewood Center Deficiencies Cited in OHCQ Survey
Released September 12, 2007 (a few excerpts) http://www.mdlcbalto.org/pdfs/RosewoodReport.pdf

• Rosewood is not ensuring that complaints and allegations of abuse, neglect, mistreatment and injuries of unknown origin are promptly detected and reported and had documentation of thorough investigation for only 50 of 183 reported incidents reviewed by OHCQ.

• When an individual experienced numerous broken ribs on several occasions, Rosewood did not inform his guardian. An x-ray showed two fractured ribs after a Heimlich maneuver was performed while the individual was choking. Three weeks later, another x-ray revealed 9 possible fractured ribs that may have been of different ages. The resident again choked on food
about 6 weeks later, and again experienced four broken ribs. The family and guardian were not informed about any of these injuries.

• Staff who was supposed to provide 1:1 support for an individual with frequent seizures was found sleeping, too far away from the individual to be of assistance.

• Water drips out of equipment and onto food, including vegetables. Mold was found growing in the moist conditions, and water leaking onto floors poses a slip and fall risk.

____________________________________

So absolutely we need the Community Choices Act, but we also need the COMMUNITY TO CARE. How do we get the community at large to feel a responsibility that our most vulnerable citizens are not exposed to the horrors other people inflict upon them by their neglect or abuse? How do we recover the time when I was a child when everyone in the neighborhood knew everyone's business and everyone looked out after each other?

When I was 4 my mom became a widow. I remember feeling as if I had a whole load of people looking after me. We took in Sandra who was a foster child of 16 to help with the babysitting of me and my brother. I have good memories of that time because I was so surrounded with love.

My son is gregarious and well-liked. I imagine that if something happened to me - he too would be surrounded with love. But I worry. I have worried for all of his 24 years what will happen to him without me to protect him? I know all too well what places like Rosewood are like. And sadly I have become all too conscious of the hate crimes committed against people with disabilities in our communities when people live alone and in isolation.

How do we as people with disabilities stop being perceived as outsiders - as aliens - as people unworthy of life? How do we become an integral fabric of our communities?

How do we ferret out the people who are willing to abuse us? When 2 people burn a man to death they get punished, but what of all the people responsible for the atrocities at Rosewood - what punishment do they get? Does our society send a message that it is OK to treat us this way when we continue to refuse to close the institutions that continue to abuse us?

We need to live in our communities where people learn to be with us and us with them. We need to be a community of interdependent people who learn from each other the value of living. The Community Choices Act offers us that opportunity.

You're inconvenienced for a day - We're Inconvenienced for a lifetime

I was in Chicago all week with ADAPT. Unlike most of the protesters I stood my ground on the street corners just beyond where the police held vigil keeping the public away. So I handed out leaflets and talked to the people who had questions. Most people took a flyer. I don't know that they all read it, but many did right, then, and there.

Some would stop and ask me questions on their way back in the opposite direction an hour later. Some would read a bit that then come back to ask questions. Nearly everyone I talked to - whether they originally agreed with what we were doing or not agreed by the time they walked away.

What made the angriest stop and think was when I said that yes, I sympathized with the fact that they were inconvenienced - that they were forced to go where they did not want to go - but tomorrow they could go where they wanted to go, but how many people with disabilities had a lifetime of not being allowed to go where they wanted to go.

I was surprised by how many people had stories to tell me. Stories about a grandparent forced to go to a nursing home because they could not get any funds for care at home, about a sister who wanted nothing more than to die in her own bed but ended up dying 2 days after being placed in a nursing home, a parent who cried when they told me about the institution her child had lived in and how horrible it was but at the time she felt she had no other choice, the direct care worker who wanted to work in the community because she hated the institution but she couldn't live on the wages she would get working in a home, and the older man who told me about the days he worked in an institution and remembers it as filthy and not fit for humans.

The people do get it. Why don't the people who make policy get it?

No one who doesn't want to live their life in a nursing home should. Everyone in this country should have access to affordable, accessible, integrated housing. It's that simple.

Want to read more about it? http://www.notdeadyet.org

Jerry Lewis

I've read so much about Jerry Lewis, but what I haven't read is what pissed me off the most. JL called out "illiterate fag" and all of the hullabaloo has been about the word fag. What about the word illiterate? Not that illiterate is a bad word, but it was used as a word to demean.

People who are illiterate are often people who are disabled, and often cognitively disabled. So is what he said that much different than calling out retarded fag?

Why do so many people continue to give a man with such little respect for people with disabilities so many accolades? He apologized for saying fag, but I heard no apology for the rest of the spew of hatred.

And no one demanded he do either.

Love Penalty

Gay marriage isn't legal. Same sex couples want the right to the benefits of a contractual marriage. They want to be able to adopt children together, to make medical decisions for each other, and to pay less in taxes.

On the other hand marriage between two people with disabilities can cause financial hardship. Benefits two people receive can be adequate to live on, but if they marry it can be too little. Some types of disability housing is restricted to people who are single. Some people because of having guardians are not allowed to marry.

In both situations we make people's lives difficult because they have fallen in love. We don't allow gay people to marry and we make disabled people suffer if they do.

If we provide a penalty to people who have long term relationships - are we discouraging people from becoming strong and more unified?

Why is the government involved in our private lives? Why are there benefits to abled-bodied heterosexual couples who marry and none to homosexual couples who desire to and penalties to disabled people who choose to. This is unfairness at its core.

http://www.twincities.com/allheadlines/ci_6836410?nclick_check=1

Mattel Toy Recall

How many recalls must there be before Mattel says they have to raise the prices of their toys because they are going to have ALL their toys manufactured in the US where these laws are more seriously enforced.

Clearly China does not care about who dies as a result of their lack of quality control.

We insist on low prices. This is what we get.

It is next to impossible to refuse to buy anything from China. At Walmart virtually everything comes from China (so they say.)

We must be willing to pay more and have less things in our life.

I know this presents the greatest hardship to people on disabilities who live on a measley fixed income as it is. So we also have to insist on spending more of our taxes on programs such as SSI and SSDI.

We in the US have the right to believe that the goods we buy in our stores are safe. Where is the quality control?

I cannot boycott all goods made in China, but I sure am going to try to boycott them to the best of my ability.

More sunshine

Today my friend said her first words since going into her coma 3 weeks ago. She said the name of her fiance. She doesn't remember she has a baby daughter. She doesn't remember the days of the week, and she can't feel her legs. And she has no idea what happened to her to get her in the hospital. But she is responsive. She feels pain. And she is getting better, albeit slowly.

Depression is a scary thing and should not be ignored. If a person says there life is too hard and they are doing things like not eating and cutting themselves and getting so drunk they don't remember what they did - those are warning signs to pay attention to. Don't be like my friend who decided one day that driving her car into a tree was easier than the life she was living. It isn't now and I doubt it ever will be. She has a very long road to whatever recovery she accomplishes.

Today was good.....

Silly day. Did mostly nothing. But did it without a schedule. Without consideration for anyone else. Did not feel once I should be a good example. Felt no guilt for talking on the phone to my friend for several hours. And now I am going to read - perhaps read all night - and tomorrow sleep all morning. A life alone. It feels good.... for a few days.

Lonely until

Yesterday my son went to camp. This morning my lover left for home. Today I am lonely. SO I will blog.

I won't miss Teddy tomorrow or the day after - as I will have settled into my solitary life. But today the house seems so quiet. No TV set on. No questions about what we are going to have for dinner or do tomorrow. No unnecessary lights on. No announcements of where he is going or that he is back. No one to feed the rabbits. No one to remind me to eat. Just me.

I don't get the chance to be lonely often. I sometimes think of Teddy and me being attached at the hip. I support him in the work he does. He supports me in the work I do. We enjoy doing the same things. I have to know where he is at all times. I never get to stop being responsible - no matter how independent he becomes.

I do get breaks from him. 4-5 hours in the summer when he goes to the pool or during the school year when he goes ot school. But the only time we are away from each other for more than a few hours is when he goes to camp for a week in August and December.

Rich is here when he leaves - so the first day Teddy is gone is rather blissful. A day where Rich and I can be alone with each other. We make love for hours on end without any concerns. We go to a wonderful romantic restaurant and I don't have to feel a bit of guilt for leaving Teddy home alone with his pizza. I feel more free than almost any other day of the year.

But than as is typical, Rich leaves and the silence without Teddy gets so loud. Today I miss Teddy. Today I feel a loss. Today I worry if he is having a good time and if he is fitting in. Today all my fears about a young man with Down syndrome going to a camp for teenagers without disabilities being OK are on alert. Today I worry. Today I miss the men I love. Today I blog.

Tomorrow I read uninterrupted. Tomorrow I play music all day. Tomorrow I cook with ingredients Teddy doesn't like. Tomorrow is mine and mine alone. Tomorrow will be wonderful!

To my friend Peaches!

H A P P Y ---- B I R T H D A Y !

A bit of sunshine...

A person I met thru my message board has had a very very hard time of things lately. His girlfriend inspired my post about the whether people with psychiatric labels like Borderline Personality disorder should parent. Since that post things with her got much worse.

This young woman drove her car into a tree. She has been in a coma now for over 2 weeks. She broke many bones - some so badly they were removed. There is no way of knowing if she will recover and if she does what she will be like.

But this post is not about her, it is about her 7 month old daughter and her daughter's Dad. I have become very close to him. Worrying with him. Fearing the worst, wondering what the best could be. I have tried to help him help his daughter - who of course has no way of understanding why her life has been turned upside down. I have tried to support him wherever it is he needs to be as it fluctuates from moment to moment. He says he thinks of me like a mother - and I think of him like a son.

So when social services picked up their baby last week because he had no proof he was the father I cried. It was as if they snatched my son out of my arms. I remember all too well when my son was my foster child the tenuous hold I felt I had on him. I lived in fear that one day the foster care agency would say they had decided he needed a 2 parent home. I wanted what was best for him - but I felt in my heart I was what was best.

Today I also cried. Today she was returned to her father. They apologized and said they made a mistake. The midwife contacted them and evidently said the magic words. I feel as if my granddaughter is back home where she belongs. Sometimes there is a bit of sunshine where before there seemed to be none.