No no no....

I could write a 10 page post about this, but I won't. I'm sure most of you have already seen many references to the story, witnessed much shaking of heads, seen the wheels turning in people's brains trying to understand how this could happen. I have no answers. I am sad beyond words - I am angry - I want to bring this young woman home with me. There is absolutely no way I can comprehend this happening...

Mom leaves disabled daughter at bar

Just pray that no other parent will see this story, reading that there will be no consequences for that mother and view this as an option. I don't want to read another story like this - ever.

Shame on Dr. Phil

Most of my readers already know how I feel about pity. Not much angers me more than people who feel sorry for my children, or anyone for that matter, with disabilities. However, there is one aspect of pity that does anger me more - when people pity me or other parents BECAUSE we have children with disabilities. And Dr. Phil McGraw of the Dr. Phil show is someone who does that frequently.

Several years back, Dr. Phil did a show about a family with three children who are deafblind. The entire focus of the show was about how difficult the girls' lives were and what saints the parents were. Now Dr. Phil has gone and done it again.

On April 13th of this year, his show titled "Deadly Consequences' aired. That particular show presented the idea that parents should be able to euthanize their children who have intellectual disabilities. Here's a short synopsis of the show:

The show centered on Annette Corriveau, who has two adult children who have a progressive genetic condition called Sanfilippo syndrome. The show opened with a brief introduction of Corriveau, followed by an interview of her conducted by one of the producers. Over the course of the opening which took more than half of the segment, viewers were shown and/or told the following:

•Video of Corriveau's two children from typical childhood to recent pictures as adults with disabilities;
•Depiction of intellectual and physical disabilities developed as a result of the condition;
•Discussion of the changes in their appearance as they got older, implying that their “not normal” appearance is tragic;
•The fact that Corriveau institutionalized both children when they were young.
•Video of one of Corriveau’s visits: she reported visiting them every two months, but doesn't touch them, because they don't react to her.

The second guest in the segment was attorney Geoffrey Fieger, who defended Jack Kevorkian, the assisted suicide and euthanasia advocate who claimed to have assisted the deaths of about 130 people. According to the New England Journal of Medicine, over two-thirds of Kevorkian’s victims were people with disabilities who were not terminally ill. During this recent segment, Fieger argued that a health care guardian’s right to consent to or refuse medical treatment should be extended to include active euthanasia such as a lethal injection. He asserted that what Corriveau wants is perfectly reasonable and merciful and that existing law against this is stupid.

On May29th, thirty disability rights organizations, led by Not Dead Yet, issued a letter to Dr. Phil criticizing the April 13th segment. A portion of that letter is shown below:

"This program was a horrific assault on people with intellectual and developmental disabilities. By conveying social acceptance and approval of active euthanasia of individuals with disabilities by their family members, the segment threatens their very lives. People with disabilities are reportedly twice as likely to be abused as their nondisabled peers. It is grossly irresponsible that the Dr. Phil Show aired a segment that further promotes any form of violence against a group already subject to discrimination, ridicule and gross devaluation. The idea that people with disabilities are “better off dead” is deeply offensive and cannot be tolerated."


The organizations supporting the letter have called for a public apology for the “Deadly Consequences” segment and for equal time to to be given to individuals with intellectual disabilities and organizations advocating their equal rights.

What are your thoughts? Is that enough? Do you think Dr. Phil will respond? I'm thinking not...

High and Low

She's a middle school teacher. Before that she worked for our state's TTAC, the Department of Education Training and Technical Assistance Center. TTAC's website says their staff will:

•Promote collaboration and teamwork with school teams families and community agencies, to build stronger educational communities.
•Promote access to educational opportunities for all children and youth with disabilities.
•Provide technical assistance that promotes evidence-based practices.
•Remain current in our knowledge of effective practices in the areas of education and technology.
•Deliver quality evidence-based training opportunities to meet the diverse needs of the adult learner.
•Foster a work environment that promotes healthy, human relationships.


The students in her classroom all have the label of severe disabilities. Some are deafblind, some with autism, some otherwise diagnosed.

Last week she directed one of the classroom aides to take the 'highs' to another classroom. It was clear that she meant the higher functioning students.

So now, besides having all the other labels assigned to them by the school district, these students have one of two other labels - High and Low.

You know what, Madame "Teacher", and I use that term loosely, I have a few labels for you....

Stay Strong, Jonah

Horror Come True

I wrote last week about my worries for Ashley's future, and here is a story about just such a nightmare come true...

Four Disabled Adults Found Chained in Basement

And here's an update:

IDs and Power of Attorney Paper work found

A Desecration of Life

Her sentence was handed down this week and it was a "lenient" 5 years in prison.

The judges at her trial felt sorry for her and believed she was "despairing of life."
A Chinese official connected to the case said what she did "caused only relatively small harm to society."

She was a mother who gave her twin 13 year old sons water laced with sleeping pills, and then she drowned them in a bathtub. After killing her sons, she dressed them in new pajamas.

The twin boys had been born prematurely and were diagnosed with cerebral palsy.

Even though Chinese courts usually deal harshly with murderers and sentence them to death or long prison terms, they felt sorry for this mother.

The mother had given up her job to care for the twins after finding it difficult to hire nannies. Her husband forgave her of the murders because after the death, they would no longer have to consider filing bankruptcy.

One of the judges is quoted as saying, "She deserved the lenient sentence. The murders resulted from years of mental burden."

The mother is quoted as saying, "I just wanted them to leave quietly."

But not to worry, this "caused only relatively small harm to society."

The $6500 Dishwasher

So I decided it was time to replace my dishwasher. It was 14 years old and wasn't doing the best job of cleaning the dishes. I shopped around, found the one I wanted, and set up the appointment to have it installed. That's when things took a turn for the worse.

Apparently the 14 year old dishwasher had been leaking for the entire 14 years. There was a hole big enough for a basketball to fit through in the back right corner of the subfloor under the dishwasher. Not only that, the wood parts that hold up the house (notice I do not know any technical terms...) were rotted also. Even the brick on the back of the house right behind the dishwasher was damaged.

I contacted my insurance company, and of course, they don't pay for 'rot', as they said. They would pay to have my kitchen floor replaced, but I don't think anything is wrong with my kitchen floor.

I received the estimate today for repairs - $6200!! I will get another estimate, but oh my goodness, what am I going to do??

All I can say is that this new dishwasher had better clean the hell out of my dishes.

Good - Not Good

GOOD

Katy at Bird on the Street has written a brilliant blog! Everyone - not just families of children with disabilities - needs to read this.

All I Ask


NOT GOOD

Monica at The Girl Who blog has written that she believes it is ok to drink while pregnant. She needs to meet my Ashley and every other child with Fetal Alcohol Syndrome caused purely by their birth mother's drinking while pregnant.

Monica, you can quote all the research you want, my research is a 16 year old girl who is deafblind, has seizures and Fetal Alcohol Syndrome - all because her birth mother thought it was ok to drink while pregnant.

I Drank While Pregnant

Robert Latimer, Murderer

On October 24, 1993, Canadian farmer Robert Latimer decided it was time to kill his twelve-year old daughter. Tracy had cerebral palsy; she had undergone three successful surgeries to improve her quality of life. A fourth surgery was planned to ease pain from a dislocated hip. Despite the remarkable success of previous surgeries, her parents were horrified at the prospect of the fourth, and Robert Latimer decided to take matters into his own hands.

Robert Latimer planned his daughter's murder for close to two weeks. He considered administering a drug overdose, or shooting Tracy in the head, but he finally settled on gassing her to death. On a bright sunny Sunday his wife, Laura, and their other children went to church, leaving Tracy at home with Robert. He murdered her with exhaust fumes from his truck.

He took Tracy's limp body, reeking of exhaust fumes, back to the farmhouse and put it in her bed (as though sleeping) for Laura or one of their other children to find when they got home. Everything worked according to plan: Laura discovered the corpse after coming home and preparing lunch. She cried that something was wrong with Tracy and called to her husband to phone for help. Robert called the Royal Canadian Mounted Police (RCMP), telling them Tracy had died in her sleep.

Robert Latimer was convicted in 1994 for second degree murder of his daughter.

Canada's National Parole Board has released the details of two special conditions its members set in granting the 57-year-old's Latimer's release from prison last week - Latimer must not have responsibility for, or make decisions for, any individuals who have a significant disability, and he must continue to participate in one-to-one psychological counselling.

Has justice been served? Absolutely not...

Not My Idea of Fun

In 2008, I wrote a blog post about Weston State Hospital in West Virginia, the hospital, though long closed, was bought and the owners were planning to use it for events such as “Psycho Path” dirt bike races, "Hospital of Horrors" haunting tours in October, and a "Nightmare Before Christmas" tour. They even renamed the hospital the Trans-Allegheny Lunatic Asylum.

Fast forward to 2010, and something very similar has happened.

Pennsylvania’s historic Pennhurst Center, once the focus of landmark litigation that sparked nationwide changes in treatment for people with intellectual disabilities, opened last night as a Halloween-themed haunted house attraction over the protests of disability rights advocates.

Advocates had unsuccessfully sought an injunction to prevent the opening of the “Pennhurst Asylum” show on the grounds of the property, once known as Eastern State Institution for the Feeble-Minded and Epileptic.

Even before the injunction was denied on Friday afternoon, advocates called for a boycott of the attraction, which references historic abuse and neglect of the institution’s patients and features a “registration nurse” who tells visitors what the asylum’s “doctor” has planned for them. Here is a video of what is in store for visitors:



The crumbling facility was closed in 1987 in the wake of a federal lawsuit alleging years of abuse and neglect. The suit, which spawned years of appeals and three U.S. Supreme Court rulings, alleged that residents had been beaten by nurses, strapped to beds, left naked or alone and drugged into stupors. At the time, the closure of the 600-acre facility was hailed as a civil rights victory.

Pennhurst property owner Richard Chakejian said said he and his crew are “just trying to pull off a fun, orderly event and we’re excited about that.”

Sorry, but none of this sounds like fun to me...

The Wrongest of the Wrong

I have crossed paths with way too many people who form an opinion about a person with severe disabilities based on what they see when looking at the person. The opinions usually center around pity and even more abhorrent, the belief that the person with the severe disability is incapable of learning, communicating, and loving, to name just a few things.

What is particular distressing is when that person forming the opinion is in a position of responsibility in a school system.

I’ve written many, many times in the past about not understanding how educators start their careers with the belief that all children can learn and are capable but after a few years, begin to ‘turn off’ those beliefs when it comes to students with severe disabilities. It seems to me (and this is based on my personal experiences and the personal experiences of other parents with whom I have spoken) that this switch to feeling differently about students with severe disabilities comes when the teachers move into administrator roles.

The administrator’s justification, again in my experience, is that the severely disabled student costs a whole lot to educate with very little return on the investment. When that attitude comes down from the administrator to the classroom, the results, as you may imagine are disastrous for our children with significant disabilities.

Let’s look at one example that happened just this week.

Brooke started middle school this year. Everyone in her school environment is new to her and she is new to them. Brooke’s mom did an excellent job of introducing her daughter to the new staff. She emphasized Brooke’s special skills and shared an immense amount of information about the progress Brooke has made in the past and is anticipated to make in the future. But Brooke does have severe disabilities.

Brooke uses a communication device – a very expensive communication device that her mother did not ask the school to provide. Brooke’s mother provided it herself and makes sure Brooke has it every day when heading off to school. This particular device has been a real boon to Brooke’s communication, and Brooke loves using it.

The assistive technology guru for Brooke’s school visited Brooke’s classroom this week and observed Brooke using her communication device. His comment? The device was way too complicated for Brooke and a waste of taxpayer money. (The device was provided by Medicaid after a long and difficult fight to justify it as the correct device for Brooke).

Mr. assistive technology guru made this comment in front of other school staff, the same school staff that Brooke’s mom had worked so hard to convince that Brooke was indeed capable. The pressure and opinions from above are again making their way into the classroom. Opinions and beliefs will be altered and Brooke will be the loser in this game of one-upsmanship.

This, in my opinion, is just one of the things that is so very wrong with our public school systems. However this one affects the most vulnerable of students – students who have to work incredibly hard every minute of every day just to prove their worth to people like Mr. assistive technology guru.

To say this is wrong is one of the biggest understatements I have ever made.

A Tale of Two - Part 1

Just two blocks from the house in which I grew up was a facility with ‘hospital’ in its name. But even as a teenager, I knew this place was different than the types of hospitals where kids visited emergency rooms and women had babies.

It was a frightening, dark place, the kind of place where neighborhood children would double dog dare their friends to run up and peak in the windows. And, there was a square cinder block building in the back that we kids convinced each other was a morgue. Long black cars that weren’t limousines could be seen leaving this ‘hospital’ at all hours of the day and night.

And I knew instinctively it was a place I never wanted to be.

The facility is still there today, over thirty years later, and I now know exactly what kind of place it is. It’s an institution. A place where both adults and children with the most severe disabilities reside. These are people, many of them children, with trachs and on vents. Children who receive school services as they lay in bed, children who never leave their beds for months on end. Some are placed there by the state or locality in whose custody they belong, and some are placed by parents, parents who have no other choice and no ability to care for their loved ones at home. I in no way blame the parents for the choices they were forced to make, but I do blame the operators of the facility for the horrible care, and I use that word loosely, that they provide.

Here is an example:

At 3am last Monday morning, a child who resided at this facility died. Of course the staff didn’t use that term. The term used by the staff is ‘expired’ – expired like a bad carton of milk, expired like a moldy loaf of bread. And then it gets worse.

The child’s body was removed and by 9am that morning, her bed had been stripped and all her possessions had been tossed into a pile in the middle of that bed.

While this might not seem like a significant action, to me it speaks volumes about the child’s treatment when she was alive, and the overall lack of respect the staff and the management of the facility have for the people who have been placed in their care.

This is one reason that I fight so hard to keep new institutions from being built and from existing institutions from remaining open. From my travels around my state and my knowledge of most of the facilities that exist, the situation I described is not unique. Rather, it is commonplace.

There is one place though that is different. Tomorrow I will contrast that place with the facility I described today. I know today’s story has not been pleasant to read, but come back tomorrow and things will be better. I promise.