Hey, this very meaningful website found me & I didn’t think I should keep it to myself!

http://sglead.wordpress.com/about/    (Contents below are not mine; cut-and-paste from their site. Go check out their blog too! )

sgLEAD is “A volunteer network for librarians, individuals and organisations interested in providing reading, learning and library services to people with disabilities in Singapore.”

singapore
Librarians for
Empowerment &
Advocacy for the
Disabled

Discussion Group http://sglead.wordpress.com/discussion-group/

“When Elizabeth was born with Down’s syndrome, my parents were told terrible things about her – that she would never live past the age of three and she wouldn’t be able to speak, walk, talk, laugh… nothing.

Well, the women in my family were having none of that.

My mother set to learning all she could about Elizabeth’s condition, and how she could best help her – she learned so much about it that she actually became a special education teacher herself. My aunts pulled together, and we had a lot of help from local community programmes.

As a result, Elizabeth, who is now 42, is a highly functional woman. She graduated from high school and has a job, catching the bus to work every day on her own.

She’s doing fine, and my family considers itself very fortunate to have her as part of our lives.”

Good day!

A 13-year-old (same age as Isabella) boy with Asperger’s left school and rode the subway — for 11 days. Just writing the sentence makes my heart sink. He was reprimanded in school and did not want to deal with further scolding at home, so he rode the subway until a transit worker spotted him. All parents worry about their children getting abducted, thanks to all the publicized incidents since Ethan Patz in Greenwich Village. I remember seeing his image on milk cartons. Parents of children with development disabilities have much greater worries. We worry that our kids will get distracted and watch something in a store window instead of coming home. We worry that out kids will forget the way home. We worry that our kids will decide that they want to go to the park instead of coming home. So we don’t send them out alone. How long can we do that? At some point, children need to become independent.

At a few days ago, Isabella went to the store to buy butter. She asked me how much it was. Good! She ran into a friend on the way home. She chatted for a short time and came home. She told me, without prodding, that she only spoke to Rose for a little while because she didn’t want me to think that she forgot the way back home. That’s more than good. Going to the store around the corner and crossing one street was a success. How do you decide how much independence to offer?

I don’t think we really think about this question often, unless a reason appears.

We just figure, hey! our child is eating, all is good!…right?  We sometimes don’t see the signs, and the ‘hidden’ signs that perhaps are indicating there may be an issue.

I am not a nutritionist, I am a Mom with a special needs child and this is my little story with some information I have found out as well.  My hope is that perhaps it may make you take a second look at your children and see that they indeed are getting the proper nutrients and calories to give them good growth.

I will start with a little information regarding my son and how this came about.

My son is 12yrs old.  He has a rare syndrome called Meckel Syndrome, as some of you have read on the ‘About Me’ page here on my blog.  We all have witnessed and are witnessing the growth of our children.  We have seen the growth spurts and plateaus over the years.  It’s almost as if one day you wake up, and wow! all of sudden they have grown out of everything they own, they have advanced in mind, body and spirit, and we wonder and realize…When did this happen? You just had that on the other day and now it won’t fit?  What did you say to me?  Where did you learn that word?  lol

Our ‘babies’ are growing!

My son had been on a plateau for so long.  Until a year ago, he had pretty much worn the same size clothes for about 3yrs, had some advances in communication, had no interest in trying to do some of the things I’d been trying to work with him on and really didn’t seem to care if he tried or did something himself, he was content to let/have someone else help him or do it for him.  Don’t misunderstand me, he is a happy boy and of course we didn’t ‘fold’ into him all the time.

As parents of special needs children, it’s frustrating at times with all the things we have/need/should do with our children.  We all have those days where we just don’t want the frustration and upset that sometimes goes with getting them to learn/do what they must.

This past year, my son has made leaps in a number of areas!  Communication, growth, drinking and much more.  He has always been small/short for his age, and is still considered small for his age, but he is now 4′ 1.5″!  He weighs between 60-65lbs, likely closer to 65lbs now.

Until this past summer, growth and nutrition seemed to still be on that plateau.  After a holiday out to Nova Scotia to visit family, most of them had only seen pictures of Patrick, not met him, he started to mention that he was tired all the time. (It was also his first plane ride)

I didn’t think to much of it at first, perhaps it was just the pace of the our first big holiday together and seeing everyone and keeping busy.  A little bit later, come mid to late afternoon, he’s looking pale and would rather lie down to watch TV or do whatever.

It still hadn’t dawned on me, that with his growth this past year, I should perhaps look at his food and calorie intake.

After returning from NS, I missed all the home cooking.  The great meals and the ‘way of cooking’ as well.  Getting back to basics again.  I started buying fresh meat again, veggies and the like, to provide good, nutritious home cooked meals.  It’s not always easy cooking for one.

As Patrick was only able to eat baby food, I decided to start seeing if I could get him to try suppers with me.  Stick with me here now.  Patrick has always had an issue with textures of things.  He has a lot of gum in his mouth and it covers a good portion of some of his teeth.  He doesn’t chew much at all.  Therefore, most of his food was close to pureed.  He was able to handle small ‘lumps’, as he could ‘break them down’.

I had a mini chopper that had been stored in the closet for many years, not using it much except the odd time when I didn’t want to physically do onions by hand I decided to give it a try.  Suppers I cooked, I would put in the chopper for him.  ‘Chop’ it down to a consistency that I felt he would tolerate and eat.  He loves it, doesn’t like the sound of the chopper, but he knows it’s supper lol

He now likes to have more choice and variety for his meals and everything has to have either ketchup or parmasan cheese on it!!

It’s better for him, more work for me, but he’s getting ‘better’ vitamins and that’s what’s important.  But…

He’s still tired!!  By mid afternoon he’s tired and some days pretty pale.  Call me slow, maybe it was a Monday…who knows, but I started thinking…  His diet has been the same for the past 3 years!! Pretty much exactly!!  He’s grown so much this past year, maybe he’s NOT getting enough calories in a day to get him through it without getting tired.

A trip to the Pediatrition, some bloodwork and a call to CCAC (Community Care Access Centre) to have a Dietition come out and review his nutrition and calorie intake had given us some answers that hopefully will relinquish the problem.

We are awaiting a return visit of the Dietition, she will be coming this Friday.  In the meantime, some information she has passed on to me, based on the information she had collected from me, was that his Vitamin C & E are not enough, neither is Fibre and he’s only getting 30% of his Iron requirements.  Ding, Ding, Ding!!  Tiredness, paleness can be symptoms of low iron.  Bloodwork has been faxed to the Nephrologist and the Dietition, I’m curious to see what it reads.

Tiredness and paleness doesn’t always mean low iron.  There are other symptoms that can be a result of not getting enough nutrition and/or calories.  Some you may not see so clearly.

Take a look at your children, think about how much they have grown, or haven’t grown in the recent past.  Look at their food intake, what are they eating?  Is it the good stuff?  Are they eating balanced meals?  Getting all the food groups covered.  It seems difficult to do, and may even seem like a lot of food, but it’s not.  Combine good, healthy food and exercise, you have the makings of a strong, healthy child in body and mind!  Good nutrition helps the mind as well, helps children learn and absorb much more.

I KNOW it’s going to be tough trying to get all the required nutrition and food groups into a days worth of meals in the beginning.  In the long run, it will be so much better for Patrick, and it’s good for us too.  He will be a healthy young boy ready to take on his teens next year and all the changes that will come with that!  It’s already started LOL

If you notice or are concerned about your childs(rens) nutrition and/or calorie intake, consult your family Dr. or Ped.  For older children, talk to them first about their meals, find out how they’re feeling over all, do they find they have enough energy to get through the day?  Do they find it hard to absorb things at school? Do they feel hungry all the time or not hungry at all?  Are they just eating, because they know they have to or should?  Sometimes there are underlying disorders that our children may try to hide as well (Anorexia, Bulimia etc).  There are many questions you can ask.  If you have good communication with your child(ren), that’s awesome, things should go well and easily.  If not, speak with your Dr. about your concerns and perhaps what you could/should do to help them.

It should be interesting over the next while with the changes coming for us here.  I’m looking forward to the visit this Friday.  I’ll keep you posted!

     I have long felt the frustration of knowing I need to teach C how to make it in this world while at the same time wanting to preserve and protect his unique personality. I’d like to think those two things don’t have to be mutually exclusive, but sometimes, unfortunately, they just are. Caught between wanting to help him not stand out in what is considered a bad way and wishing kids would just mind their own business has left me frustrated and angry with the way of the world.

     A member of C’s team pulled me aside last week and said he’d been holding hands with his friend “T,” the boy I consider his first real friend. A truer Mutt and Jeff there never has been; T outweighs C by probably 50 pounds and is as tall as C is short. They are quite the pair, drawn together by their mutual love for Mario and T’s uncanny ability to just be C’s friend. 

     So why shouldn’t C hold T’s hand? Who cares, really? Apparently, the other kids do. I’m not sure if it was directed at the boys or if C just overheard someone talking, but he now knows what he calls “the ’G’ word.” He knows “gay” is considered bad despite not really knowing what it means.

     I’m in a conundrum here, for many reasons. The first of which is that both Husband and I are fully supportive of gay rights, gay marriage, adoption by gay couples, you name it. That being said, we know it is not yet developmentally appropriate for C to know about sex and its relationship to the “G word.” So explaining what “gay” really means is something I don’t feel he’s ready for just yet. Quite frankly, if we even mentioned that men sometimes marry men, I’m pretty sure he’d ask T to marry him across his crowded classroom, and then there would be an entirely worse set of problems.

     Which brings me to my second conundrum. I am so tired of feeling as though we need to change C’s behavior and actions to match what other kids deem appropriate. His holding T’s hand is as innocent as it is sweet. Telling him holding hands with another boy is inappropriate makes me want to rebel against all that is deemed “normal” and “typical.” Yet at the same time, if we don’t help him with this, it will be just one more thing that makes him stand out from the crowd.

     I want C to stand out from the crowd – he always will no matter what he does, both in marvelous ways and in ways others find unsettling. The last thing I want to do is turn C into a generic clone, although I realize this will never be the case. And while there are some things I refuse to try to change about C, this is probably a situation where I should just go with the crowd. However, I’m hoping that down the road, we can go back to C and tell him that in fact some boys DO hold other boys’ hands, and that it is perfectly okay. But in the meantime, we’ll just have to go with that rule.

     I don’t like this new rule; I think it goes against not only my personal beliefs about people being allowed to love whomever they love, but it also takes away some of C’s innocence all for the sake of not standing out for something other kids say is wrong. So while Husband was back in C’s room tonight telling him that in 3rd grade, boys just don’t hold other boys’ hands, I was left feeling as though we have somehow sold out just a little bit.

Verbal Abuse of the Elderly

Verbal abuse may seem to be one of the lesser forms of elder abuse but it can be just as serious and just as harmful as physical abuse.

Verbal abuse can begin in an insignificant way and can escalate and lead to more serious abusive situations.  This type of abuse is generally from people known to the elderly person involved.  This can include family members, spouses, and caregivers.

The person being abused often has mixed feelings about the person abusing them.  Because it is often a family member, there are feelings of fear, worrying that the person abusing them may no longer support and assist them.  The person who is the object of abuse often feels guilty or somehow at fault for being treated the way they are treated.  They feel that they deserve it for some reason.  They resist reporting this situation because of fear, because of lack of self worth, because of the connection to the abuser.  They also worry that somehow they will bring trouble to their abuser by reporting the abuse.

Verbal abuse is generally intimidating to the victim.  Verbal abuse is very isolating and can often cause lower self esteem and feelings of depression.  Examples of verbal abuse are insults, swearing, ridiculing, yelling, humiliating and threats.

Chronic verbal aggression ranks as the second most prevalent form of abuse.  Most often people who are abusive to others have seen it as children, grown up surrounded by it, and are affected by this for their entire life, continuing the cycle by being abusive to those around them, parents, spouses, and others.

Repeated verbal abuse has a devastating effect on the victim.  The victim feels hopeless, blames themselves for the abuse they are given, and feel useless and worthless.  The victim will often be withdrawn, very quiet, nervous or uncomfortable around the person who is abusing them.

These are obvious signs of trouble and should be recognized as such.  Abuse in any form should not be tolerated.

Be aware of those you care for.  Be aware of signs of verbal abuse.

“The honeymoon is over. By now, it is clear to teachers and parents alike if a student is experiencing difficulties adjusting to the new demands of the school year.”

Whether those demands are related to a new school, new coursework, new teachers, new classmates or a combination, it is important not to take a ‘wait and see’ approach. If difficulties are not addressed in a proactive manner, student motivation for school can dwindle, and behavior problems may increase.

Parents and teachers should begin by talking about the issue and building a positive working relationship with the student. Discussions should focus on the student’s assets, strengths, and interests. Begin by trying to learn what the student dislikes and his/her reasons those dislikes. Are assignments too hard? Are long-term projects overwhelming? Is a new teacher’s style more challenging? Is the student being bullied or alienated by friends?”

You can read the rest at ASAH’s Parents’ Connection

This is another notice on special needs education, retrieved from Early Years Childcare Forum:

If you are interested in knowing more about dyslexia and related learning disability, the University of Nottingham (Malaysian Campus) in partnership with Hils Learning are organising the following:

“Falling Through the Cracks”
Conference (28 Nov 09, 9am – 4pm) Fee RM250.00
Workshop (29 Nov, 9am – 4pm) Fee RM450.00
Both sessions Fee RM650.00

Contact: Tel. 03-6203 0029 or 012-307 6590
Email: enquiry@hislearning.com

The Up close and Personal view of PSW Canada!

Two things I hate more than anything are math and exercise. No, I am not 500 lbs. I just don’t like exercise that is boring. I prefer to backpack and rock climb. Yes, I am a teacher, and I teach math and do a very good job at it. I have always struggled with math because I am dyslexic and learning disabled. I taught myself how to do math, and now God uses me to help children who need it. I don’t have to like math or exercise to know it is good for me. Being honest with my students helps them to learn that, too. I am also honest when I say that I groaned when I found out that the product I received free to review for the TOS Crew was an exercise DVD that incorporated math. And no, the vendor doesn’t control what I say about their product. However, I am fair, as well as, honest. This isn’t about me, but about helping my parents find products suitable for their students. If you read my blog regularly, you will know that once again I was pleasantly surprised at what I found.

The DVD, Gymathtics, created by Carrie Scheiner and her family through Suncheine World, LLC. Is well-produced and developed. Ms. Scheiner uses the premise that learning is enhanced by making as many connections in the brain as possible. Information from even seemingly different topics can be joined together and taught through activities to increase the connections leading to even stronger learning connections. In this case, math concepts are connected with physical exercise movements. Many students will find this odd, but this odd difference lends to its interest and fun. The program provides a warm-up section that has your body making lines, circles, and polygons that stretch your muscles preparing them for the more strenuous exercises to come. Your student will practice various ways to count as they do aerobic exercises, and then the intensity increases with pattern power as your student will do various pattern movement activities that strengthen the muscles and heart. On the screen there are diagrams with math information about polygons, circles, different kinds of visual patterns, and skip counting methods. Most are self-explanatory. During her exercise instruction, Ms. Scheiner also gives more math information verbally. The DVD finishes with the “Well-being Wind Down” section where she leads in relaxing stretches cooling down the body from the aerobic activity while explaining healthy lifestyle choices. These choices are placed on the screen as text at the end of the exercise program. The multisensory concept of math and exercise together is unique, but many students will find it delightful.

Being multisensory, many special needs students will be able to access it and benefit from its information such as those with autism, learning disabilities, dyslexia, attention deficit and attention deficit with hyperactivity, especially. Deaf students will be able to get a lot of detail from the math concepts as well as being able to follow the exercise steps pretty well visually. Ms. Scheiner often demonstrates the moves before the exercise begins. She could do this every time to be more beneficial. A Deaf student might benefit more from the math concepts if more of what Ms. Scheiner relates verbally is added to the diagrams on the screen or more diagrams were used during the exercise segments. Blind students will be able to access the music and dialogue of the DVD. Ms. Scheiner, trying not to overdo the verbal content for probably time purposes and interest of the student, may at times not give enough instruction of the movement of the exercise for a totally blind or mostly blind student to easily do the exercise. A little more specific instruction could probably be done to allow for more accessibility by a blind student. Math concepts could really use more verbal information added to allow for more benefit of the blind student, as well. Ms. Scheiner does a good job without probably even trying to provide accessibility. I am pretty certain that she could do an excellent job when aware that her DVD’s could be used by an even wider audience with just a little more thought and planning of verbal script and diagramming. You may think that there is no hope for the DeafBlind student. Well, I participated right along with my student helpers for this review. I, of course, could not get any information directly being DeafBlind. My students tactually explained to me the moves and the math concepts. I didn’t always do them perfectly, but it allowed us to giggle a lot. My readers know that I like lots of giggling during my lessons. Giggling equals fun, and fun equals better learning and longer remembering.

Gymathtics is a unique, but great way to get your students moving and possibly learning some math. They may not even realize they are” doing math”. This is their first DVD, $24.99,  but more are available and others being developed. Their website at http://www.exploramania.com has these DVD’s and other products like exercise mats and balls using math.  Check them out, and you may soon be giggling over doing polygons and parallelograms.

Cancer is a vicious killer, and one that hits home for me, having lost my dad at an early age, and several close friends to the dreaded disease. The good news about cancer though, is through innovation and research, by top scientists, survival rates have soared.

One of the really important developments that have lead directly to more cancer survivors is early detection through screenings. But if the communists in Congress, and Obama have their way, this will come to a grinding halt.

You see, screening costs money. Not only do those tests cost money, but so do the follow up tests as well treatments. Many cancer treatments are highly successful, but highly expensive, as well.

One thing we know, for sure, when the federal government unconstitutionally takes over health care, there will be a finite amount of money to be spent on caring for the sick. To make these dollars stretch, expensive treatments and many tests will have to be stopped, or postponed. Decisions to do this will be made by unelected and unaccountable boards of so-called experts, or as Sarah Palin has labeled them, death panels.

These “experts” won’t necessarily all be doctors, but they will be bean counters.

We’re seeing a couple of issues already, and ObamaCare hasn’t even passed. The first is in breast cancer screening. The U.S. Preventative Services Task Force has made the recommendation that we no longer do mammograms at age 40. It is their idea that 50 is the proper age to start, and those self exams? Forget about ‘em!

From Breast Cancer.com:

The standard schedule of starting screening mammograms at age 40 may soon change, and breast cancer prevention strategies would be improved, according to the U.S. Preventative Services Task Force. Women may not begin to have screening mammograms until they are 50, and they may cease doing breast self-exams altogether, if the newest guidelines for breast cancer screening from the USPSTF are widely adopted. In Canada and the United Kingdom, 50 is already the age at which screening mammography is begun. These new guidelines may have an impact on what health insurance providers will pay for.

The U.S. Preventative Services Task Force, a branch of the U.S. Department of Health and Human Services, has updated its recommendations for breast cancer screening. After using computer simulation models to project the results of different screening strategies, the task force said that they recommend the changes because they want to cut down on the “harms” and risks of testing, which they believe do not outweigh the benefits. They cite too many false positives, unnecessary biopsies, anxiety, or in short, overdiagnosis. Their November 2009 guidelines suggest:

* Women between 40 and 49 years old should not be having routine screening mammograms. Instead, they say that women should make an informed decision about screening mammography before 50, and weigh their potential risks and benefits with their doctors.

* Women who are 50 to 74 years old should be having a screening mammogram every other year, because the risk for breast cancer increases as you age.

* Women over 74 years old are not given specific guidelines about routine screening mammography – as their risk of death from heart disease and other ailments is greater than from breast cancer.

* Women of any age should not be taught to do breast self-exams, but BSE is not forbidden.

* Clinical breast exams will not be required before screening mammograms, because CBE appears to add no benefit to the information gained from a mammogram.

In 2002, the USPSTF guidelines for breast cancer screening stated that women 40 and older should have annual mammograms to screen for breast cancer. The American Cancer Society and the National Cancer Institute have also agreed on screening mammograms for women ages 40 to 70. The The American Cancer Society will maintain their recommendation to start screening mammograms at age 40.

Mammography is not a perfect tool and neither is a breast self-exam. But it seems odd to take away these two tools, which we have been told are important, for women aged 40 – 49. This same battle has been fought before, in the mid-1990s. It was resolved by 1997, when the National Cancer Institute agreed to support mammograms for women in their forties.

In an editorial published in Annals of Internal Medicine, Dr. Karla Kerlikowske says that the focus should shift from screening and early detection to breast cancer prevention interventions. But for this to be effective, Dr. Kerlikowske says that we need a better risk model, more research on prevention, and standards “for routinely assessing risk factors, calculating breast cancer risk, and reporting risk to women and providers in an easily understandable format.” Couldn’t we wait, until more research has been done, before we change screening guidelines? Won’t women be more at risk for ten years of their lives, if they are not having a mammogram and doing their self-exams?

This sentence hit me like a ton of bricks, just because of the wording:

Women of any age should not be taught to do breast self-exams, but BSE is not forbidden.

Are you kidding me? “BSE” stands for breast self examination. And this government death panel is telling women they shouldn’t learn how to do them, but are not “forbidden” from learning how and doing them. How generous of them.

That one word, “forbidden,” when talking about what one can and cannot do with their own body, in the privacy of their own home, tells you all you need to know about the entire process that is coming down the pike, and the mentality of those who will sit in judgement on these death panels.

You will notice too, that in making this recommendation, this death panel references the UK and Canada as their model of inspiration. Two counties that have such great health care, because of government control, that those who can, leave the country for treatment of anything more complex than a head cold.

From Deroy Murdock at National Review Online:

Compare America’s system with Canada’s and Great Britain’s. The latter are single-payer, universal health-care programs in which medical treatment is free at the point of service (Yay!), although citizens eventually pay for it through higher taxes (Boo!).

According to Organization for Economic Cooperation and Development data, there were 26.6 MRI machines in the U.S. per million people in 2004. In Canada, there were 4.9 such devices, while Britain enjoyed 5. For every 100,000 Americans, 2006 saw 436.8 receive angioplasties. Among Canadians, that figure was 135.9, while only 93.2 Britons per 100,000 got that cardiac procedure.

Maybe that’s why, among American men, heart-attack deaths in 2004 stood at 53.8 per 100,000. In Canada, 58.3 men per 100,000 died of cardiac arrest, while coronaries buried 69.5 of every 100,000 British males.

The fatality rate for breast cancer, according to the National Center for Policy Analysis and Lancet Oncology, is 25 percent in the U.S., 28 percent in Canada, and 46 percent in Great Britain.

Among those diagnosed with prostate cancer, 19 percent die of the disease in America. In Canada, 25 percent of such patients succumb to this disease. And in Great Britain — an Anglophone NATO member and America’s closest ally — prostate cancer kills 57 percent of those who contract it. That is triple the American fatality rate.

Here’s an interesting chart, for those who like charts:

………………………………………….US……… Canada………..UK…………..

CT Scanners.(per 1MIL)……………………32.2………..10.7…….…….7

MRI machhine(per 1MIL)…………………..26.6………….4.9……….….5

Angioplasties(per100K)……………………..436.8………135.9……….93.2

Bypasses(per100K)……………………………84.5………..72.7…..…..43.4

Male Heart MI death(per 100K)………………53.8…..…..58.3………..96.5

Female Heart MI death(per100K)……………29.5……….28.1.…..…..33.4

Breast Cancer fatality%)……………………..25…………28……………46

Prostate Cancer fatality(%)………………….19…..…….25….………..57

Male all cancer fatality(%)……………………33.7………47…………..56

Female all cancer fatality(%)…………………37.1……..42……………44.2

Notice, there is a serious lack of medical equipment in Canada and the UK, specifically, MRI machines and CT scanners, equipment that American hospitals use extensively on a daily basis to save lives.

You will also notice that breast cancer is slightly more likely to kill you in Canada, and probably will kill you in jolly old England. And if you are a guy, you really don’t want to live in either Canada or the UK. In the UK prostate cancer is death sentence for most.

Sarah has weighed in again on this craziness, as now the death panels are recommending changes in other screenings:

Cancer Screenings – Rational Advice or Rationed Care?

Today at 1:10am

It was a breath of fresh air to finally hear the Democrats admit to their health care bill as “a lot of show and tell and razzmatazz,” (see Democrat talking points, in reference to my book). At least now we’re all on the same page when discussing the problems with their monstrous government health care “reform” plan.

Now, tonight, more disconcerting news – the New York Times reports of new guidelines to scale back cervical cancer screenings. The recommendation from the American College of Obstetricians and Gynecologists comes on the heels of another recommendation to limit breast cancer screenings with mammograms. There are many questions unanswered for me, but one which immediately comes to mind is whether costs have anything to do with these recommendations. The current health care debate elicits great concern because of its introduction of socialized medicine in America and the inevitable rationed care. We need to carefully watch this debate as it coincides with Capitol Hill’s debate and determine whether we are witnessing the early stages of that rationed care before the Senate bill is rushed through as well.

Another question is why these women-focused cancers are seemingly receiving substandard attention at a time when proactive health and fitness should be the message. Every woman should encourage rigorous debate to ensure that our collective voices are heard. We are paying attention to Washington’s health care proposals, and we want to hear what helps patients the most.

We need answers: Is early screening not saving lives? Why do doctors’ groups disagree? Did costs play any role in these decisions to change the recommendations on breast and cervical cancer screenings? We need assurances that everything we’ve heard this week about fewer tests for women’s cancers is a result of patient-focused research and providing the best care for the right reasons, and not because of bureaucratic pressure to control costs.

Obviously the first thought that comes to mind when hearing of these new recommendations from bureaucratic panels is “rationed care.” It’s fair – and healthy – to ask if that’s what Washington has in mind with a government-controlled takeover of a health care system.

- Sarah Palin

The rationing of health care is the only way ObamaCare will work. Again, there will be a finite amount of money budgeted to the nation’s health care. Our “benevolent leaders” will “generously allow” only a certain amount of the money they confiscate from us to actually be used to keep us in good health.

I mean, look, some of this money is desperately needed for more important projects, like keeping ACORN and SEIU in the “community organizing” business. How else will the

democrat/communists keep the glorious people’s revolution alive?

I promised you more still on death panels. (Like this ain’t enough!) Here’s an alarming report from the BBC:

Liver cancer drug ‘too expensive’

A drug that can prolong the lives of patients with advanced liver cancer has been rejected for use in the NHS in England, Wales and Northern Ireland.

The National Institute for Health and Clinical Excellence (NICE) said the cost of Nexavar – about £3,000 a month – was “simply too high”.

But Macmillan Cancer Support said the decision was “a scandal”.

More than 3,000 people are diagnosed with liver cancer every year in the UK and their prognosis is generally poor.

Only about 20% of patients are alive one year after diagnosis, dropping to just 5% after five years.

‘Disappointed’

Campaigner Kate Spall, who won the right to have two months of treatment for her mother, Pamela Northcott, in 2007, said it had prolonged her life by four-and-a-half “precious” months.

It had allowed her 58-year-old mother, from Dyserth in Denbighshire, “closure” and “peace”, she told BBC Radio 4’s Today programme.

“The problem in Mum’s case is it took a year for me to fight for the treatment, so we’ll never know how well she could have done,” she said.

Prof Jonathan Waxman: “I’m very unhappy about the way these decisions are made”

“We had extra time, which was very precious to us all, her symptoms were helped greatly. And, more importantly, for Mum it was a case of getting some closure and peace.

“The psychological feeling when a group of people decide that you cannot have a treatment that can help you is really devastating.”

Cancer Research UK’s chief clinician Peter Johnson said the decision was “enormously frustrating” because there was no doubt about the drug’s effectiveness.

He said: “There’s no alternative treatment and there are no other places for people to go. It is expensive, but the only issue is cost and the number of patients affected are quite few – there’s probably only six or seven hundred patients a year.”

Nexavar – also known as sorafenib – had already been rejected in Scotland, despite studies showing it could extend the life of a liver cancer patient by up to six months.

‘Devastating disease’

The Scottish Medicines Consortium ruled that “the manufacturer’s justification of the treatment’s cost in relation to its benefit was not sufficient to gain acceptance”.

Andrew Dillon, chief executive of NICE, agreed: “The price being asked by [the manufacturer] Bayer is simply too high to justify using NHS money which could be spent on better value cancer treatments.”

And the group’s clinical and public health director, Peter Littlejohns, added the drug was considered “just too expensive” by its advisory committees.

Nexavar is routinely offered to cancer patients elsewhere in the world, and Mike Hobday, head of campaigns at Macmillan Cancer Support, said he was “extremely disappointed” at NICE’s decision.

“It is a scandal that the only licensed drug proven to significantly prolong the lives of people with this devastating disease has been rejected, leaving them with no treatment options,” he said.

Alison Rogers, chief executive of the British Liver Trust, said: “The decision to reject a treatment for advanced liver cancer is a huge blow for patients.

“This is a treatment to extend life for people where all other options have run out.

“It is particularly hard for people with liver cancer given that treatments for many other advanced cancers have been given the green light by NICE.

“People with liver disease often face stigma and discrimination and sadly this decision feels like a further disadvantage to them.”

Earlier this year, a government review of end-of-life treatment said NICE should give extra weight to drugs that could extend a patient’s life.

The Department of Health said NICE was not ignoring that recommendation, but the NHS could not just pay for any drug at any cost.

The UK is a very totalitarian system when it comes to patient care. The system also strips it’s citizens of many basic liberties and freedoms we take for granted in America. As I wrote in an earlier piece, not only do they have death panels in the UK, these government monstrosities have evolved into what I am calling “lifestyle panels.”

I had included this from the Brussels Journal:

Kerry Robertson, 17, and Mark McDougall, 25, haven’t broken any law. But they are on the run from the authorities, and from their home in Dunfermline, Scotland.

Less than eight weeks ago the couple were excitedly planning their wedding. They had booked church ceremony for the 5th of September, a Saturday. She had already chosen and bought her wedding dress. They had bought the rings, and invited 20 guests. Two days before the big day, however, social services told them that their wedding would have to be cancelled. Fife Council wrote a letter, objecting to the marriage, to Dunfermline Register Office, who consequently refused to marry the couple.

Social services claim Kerry cannot understand what marriage means, because she has learning difficulties. They are mild, it seems. She is able to read and write, and is going to college to “catch up.” Her partner Mark told the Daily Mail: “‘I didn’t even know she had learning difficulties until we’d been dating for two months.”

Kerry is 29 weeks pregnant – with a boy they have named Ben. “Although Ben isn’t born yet,” Kerry says, “I already love my baby and know I will be a good mum. Mark and I talk to him inside me every day and tell him we love him. We’ve already bought him clothes and my cousin, who recently had a baby, has handed down a beautiful crib for him.”

Social services say that Kerry – a college student – isn’t intelligent enough to bring up her child with Mark. They plan to allow the couple only a few hours with Ben after he is born. Then Ben will be taken from Kerry and Mark, and placed with foster parents.

I went on to add:

Let’s think about this for a minute.

Here are a couple of young kids in love. They were excited and planning a nice wedding, when all of a sudden, a Big Government drone steps in and through their own “expertise” decides they are not fit to be parents because the girl is a little “slow.”

Under those guidelines, if adopted in America, would Barack Obama be allowed to keep his kids? I mean this is the guy that thought he had traveled to 57 states on the campaign, and had 1 or 2 to go. Would that make Obama a little “slow” in the eyes of the almighty bureaucrat?

Can you imagine?

My point? Allowing the government control over anything can be dangerous, even for the most noble of reasons. It’s why our founders wrote a Constitution that was design to allow the several states and all citizens, great freedoms, while restraining the federal government. In the past 100 years we have seen a rapid shift to the exact opposite, as “progressives” both democrat/communists and Republicans have grabbed more control, and wrestled many freedoms from the several states, and the American citizen.

Freedom is never more than one generation away from extinction. We didn’t pass it to our children in the bloodstream. It must be fought for, protected, and handed on for them to do the same, or one day we will spend our sunset years telling our children and our children’s children what it was once like in the United States where men were free.

____Ronald Reagan

All of these new “recommendations” that are suddenly coming down from these faceless panels are the canary in the coal mine for what is to come if we allow Obama and his radical communist agenda to succeed., if we allow ObamaCare to become law.

This is can all be stopped, but you must be willing to put every single ounce of effort you can muster to achieve that goal. We are at war in this nation. Oh, it’s not a shooting war, but it is a war nonetheless. We are war with radical communists who want to “fundamentally change” America into something it was never meant to be.

It’s a failed prescription. Communism, socialism, Statism, whatever “ism” you want to call this evil, has destroyed nations world wide every time it has been tried. Just because this group of radicals think they are the ones smart enough to make it work doesn’t make it so!

The surest way to lose most, if not all, of your most fundamental freedoms and rights is to allow the Obama regime to continue along this path of certain destruction.

As I write this on an early Friday afternoon, I realize the U.S. Senate is about to vote on a 2000 plus page piece of liberty destroying garbage that absolutely no one has read, or understands.

This multi-trillion dollar affair will raise taxes, destroy our quality of health care, and give the government powers that will, for all practical purposes, void our Constitution, completely usurp it.

Speaking of the Constitution, it only took four sheets of paper to write the most significant and enduring political document in the history all mankind. Our Constitution is the envy of the world, and the absolute blueprint for the freedom of all mankind. Four sheets of paper.

By contrast, the lunacy that is our current radical communist controlled Congress, has produced bills in the House and Senate of a combined total of nearly 4100 pages. Incredible.

Here’s a good time to remind everyone the words of the Great Ronald Reagan on the dangers of allowing these radicals to take over our lives through health care. This is from the successful Operation Coffee Cup Campaign against socialized medicine in 1961:

Isn’t it time that all of America listens to one of our greatest leaders in history?

You can read more about the horrors in Canada and the United Kingdom here and here.

“Public Law 94-142 proved to be landmark legislation, requiring public schools to provide students with a broad range of disabilities – including physical handicaps, mental retardation, speech, vision and language problems, emotional and behavioral problems, and other learning disorders – with a “free appropriate public education.” Moreover, it called for school districts to provide such schooling in the “least restrictive environment” possible…

In more and more cases, special education students began spending time every day in regular classroom settings with their non-special education peers.” - post by Priscilla Pardini

I find it disturbing to learn that many of the students “labeled” special needs are not really too special after all.  

A few years back I taught at a public school where a lot of the neglected children were categorized as special needs by reason of neglect which caused emotional and behavioral problems.  In fact, little Johnny could read, write and learn just as any other average child, but his educational span reached as far as the classroom door.  And it’s not just the parents, it’s the schools too.  When I taught, eighth graders were expected to attend a total of four 90 minute classes with 20 minutes for lunch and 20 minutes for physical education.  No wonder so many of our students are restless.

I would much rather that they not be under such a label, but instead mandated to seek professional assistance or better yet reform the parents first.  An IEP (Individualized Education Program) doesn’t help this student, but rather makes loopholes for them to continue to misbehave and harbor the very emotion that is holding them back in the first place.  It should be a crime for me to allow the television or video games to nestle my child to sleep, rather than reading them a book, reviewing their homework or giving them brain puzzles.  I can’t believe that in 2009, Public Law 94-142 hasn’t been modified to address these obvious points. Thus “okaying” the cycle of abuse and neglect that has risen in our country. 

The United Kingdom offers a nurturing approach to address the issues associated with children with emotionally or behaviorally challenged students. (http://www.teachernet.gov.uk/_doc/12605/promoting%20mental%20health%20guidance%202001.pdf)  I wonder why most American schools eliminated the life-skills course from the curriculum…think about that. 

I truly believe that rather than labeling the emotionally and behaviorally challenged as “special needs” or with a “disability” they should be uplifted and nurtured back to health. Don’t you agree? If I were labeled disabled, I will do one of two things; prove that I’m not or act the role.  Why would we want our children to grow up using the shortcomings of their parents as a crutch on their education and lifestyle?

I wonder if the parents of truly special needs children can help amend this law? It’s far too easy for others to find a spot under Public Law 94-142. 

Yesterday, I left you right in the middle of a big decision time for Paul and me.  Today, I’ll finish up that journal entry for you.

Remember that we had said YES on the worksheet to many adoption scenarios.  Then our caseworker, Machele, had told us about 2 babies -soon to be born- who had family of history of mental illness.  She asked us to pray about them and to let her know what we decided.

Wow.  We were pretty overwhelmed.

Paul had said time and time again that he wanted to adopt a hard-to-place child, a child that perhaps wouldn’t have a home if we didn’t adopt him/her.  These two baby girls surely fit that category.  Is this what God wanted for us?  And what about the fact that the babies were white?  Wasn’t God calling us to non-white adoption?  Or was that just something we had decided on?

We thought, prayed, and worried about this decision for several days.  We researched bipolar and schizophrenia.

In the end, we decided to say NO to both of these adoption plans . . . .  It was a difficult phone call to make to Machele that Friday.  It felt weird to say NO.  One day we said an absolute YES to hypothetical situations.  Two days later when faced with two very real situations, we said NO.

What did that mean for us?  We decided to keep our general answer YES to mental illness — we would still consider babies coming from mentally ill birthmothers and families.  We also decided the timing was wrong.  Three weeks was too soon.  Also, we were reminded how specifically God seemed to direct us to non-white adoption.  But mostly, we lacked a peace about both of those babies.  After making the difficult decision — however hard it was — we felt a peace again.  We felt like God wanted us to say NO.

Machele was awesome and understanding.  She didn’t question us or condemn us for our decision.

We still feel confident that we made the right decision.  Perhaps that won’t be the last tough decision we make during this process.

Lord, I pray for these two baby girls.  I pray for their health that they would both be physically and mentally whole.  I pray that they would both be placed in loving adoptive homes at birth.  I pray for peace, comfort, and joy for the babies, their birthmothers, and the adoptive families.  Thank you for guiding us and for giving us peace.  I pray that this small emptiness and hurt that I feel for these two babies would be a reminder to pray for them and other special needs children in need of families.  Raise Your people up to adopt them, Lord!

Wow!  What an emotional time for us!

Again today, I pray for those two baby girls — now 8-years-old.  Lord, would you continue to prove Your love for them?  Would you protect their bodies and their minds?  Would you continue to make them whole, Lord?  And would you strengthen and bless the families that I hope adopted them.  Lord, love on those two girls real good!

Isn’t Autism .  .  . too concrete to understand abstract religious concept?

Probably AS tends to have more abstract ability than an autie. I’m happy to hear feedback on this. I am sure I have been able to wrap my mind around some abstract concepts, yet I need to understand ‘abstract’ in more concrete terms and can’t come up with an example now.

Religion is full of abstract concepts, yet religion is a construct of Man, not God. It is to glorify the organization and is socio-political more than faith/belief based. I have some constructs myself that help me understand the concept of a Creator and Higher Power. I do not dictate to any other person how to believe and will share my thoughts only if asked. Usually a mistake since askers are rarely seekers but fight-picking ‘my way is the only way’ types.

I read the Bible more than once in elementary school and have studied other Holy Books asking for guidance. My belief are between me and my concept of God. I dislike being forced to violate my beliefs because they are imputed other bases than belief. {“You don’t/can’t/quit belief in (speaker’s version of) God.} or I am ridiculous etc. I try to please, then feel guilt, while they have no appreciation.

I believe in Jesus as the Anointed one/Christ/Messiah Who was predicted and Who died for everyone’s sins if they accept His sacrifice. That makes me a Christian, right? And, I do all in my power to follow God’s teachings in every part of my life, so I am Muslimah, right?  I meditate to bring a calm I can carry with me so I am Hindu, right? I must be a Buddhist if I love life and don’t even want to kill fleas, right?

Jesus may have been back several times. His recorded words indicate planning to be back in His follower’s lifetimes. We probably fail the test every time. He certainly would not be accepted if He came as an Autistic! A bum, far more likely, so that is the example pastors always use. It is possible for society to see itself CLEANING up a bum and taking him to church. Could you take a vocalizing, rocking, bouncing, laughing, finger stimming autistic who wears sweats inside out, covers their ears and maybe smells, yet can’t be cleaned up? Would you see Jesus and show respect for the Glory of God?

I only bounce, but that offends and is inadequate for me to process auditory input. Why go to church and be told to leave every one? I try, but rarely get a chance to learn anyway. That was why I went- to learn about God, not socialize and show off clothes and face paint. I would still go if there were a place for me like the nursery for babies. And an understanding not to say more than ‘hello’ . . .

Wow — it’s getting so exciting to see how God was so carefully directing us toward adoption and toward Zachary!  Here’s another journal entry.  It is dated April 23, 2001.

Machele, our adoption case worker, has been great!  She is friendly, easy to talk to, funny, and encouraging.  Our meetings with her have been a blessing.

Our first meeting was a heap of papers and a long list of the documents to come.  We took about an hour to discuss the list and some of the process to come.

She mentioned the great need for black adoption.  Just that morning she had received an email from Indiana searching for a family that was open to adopting an African American baby.  She was thrilled that we wanted to adopt transracially.

We didn’t really get much new information from that first meeting since we had gone to the Bethany orientation earlier and got lots of information then.  But that first meeting made our upcoming adoption seem such a reality.  Adoption for years had been something we talked about, but now it was the reality.  We were really doing it!  It brought feelings mostly of excitement but also of nervousness — much the same feelings that a pregnancy brings.

That first meeting also acted as a confirmation for Paul and me.  It felt right.  We clicked with Machele. She talked of the need for adoption, especially of black children.  And it fueled our excitement to be there with her, discussing our adoption.

For homework before our next meeting, Paul and I had a list of possible birth parent scenarios and a place for us to check yes or no whether we would consider such an adoption plan.  The list included prenatal care, drug use, tobacco use, rape incidents, mental health, criminal background, HIV, etc.  We called Robert, my father-in-law who is an obstetrician, to get his professional opinion on the chances of each of these things affecting the baby.  After our discussion with him, we decided to say YES to all of the scenarios — we were open to considering a wide range of birth mothers, birth fathers, and lifestyle choices.  We felt confident in saying YES to them.

Our second meeting was the next week.  This meeting was mainly for us to go through the yes/no worksheet with Machele, qualifying any item that we wanted to.  We began to go through the list with Machele reading the scenario (“Twins?”)  and us answering (“Yes.”)

Rape?

Yes.

Learning disability in birthmother?

Yes.

Learning disability in extended family?

Yes.

No information on birthfather?

Yes.

Mental illness in birthmother?

Yes.

Okay.  Any limitations or qualifiers?

No.

Okay . . . Mental illness in extended family?

Yes.

Limitations or qualifiers?

No.

Machele stopped and was giddy with excitement.  ”I just have to stop right here and show you something!”

She turned in her chair and picked up a small stack of papers.  She then excitedly explained that these were two birthmom profiles for which she had no families who were interested.  They both included major mental illness — bipolar disorder and schizophrenia– in both the birthmothers and the birthmothers’ parents.  Both babies were girls and caucasian.  One of them was due to be born in only 3 weeks!  The other was due in June.  Machele told us that if we were interested in either one of them, she could rush our stuff through and get it going.  She was willing to do that since these babies were such a great need.  She told us to pray about them and to let her know what we decided.

Wow!!  Very exciting!  Don’t you love cliff hangers?  I am stopping right in the middle of this journal entry just to leave you hanging!  :)

I love it!

And I love adoption!

November is National Adoption Month!  Please pray for the orphans all over the world.  And pray for the people who are meant to adopt them!

Very cool.  They have all kinds of stuff here.  Many of these devices are compatible with the Mac.  Click here to find out more.

We spent about 20 min looking at old photos on the computer and some videos.  Most of them we looked at were either right before M was born or right after.  I’m seeing S through a different pair of eyes.  My goodness, she was round!  It’s funny looking back, especially the video, because you forget sometimes the essence of them back then.  Pictures just capture that moment.  But the video…oh my goodness.  I got teary just watching them.

S had dances for each of the musical pictures of this little Winnie the Pooh book.  She was showing them off.  Her chubby little legs bouncing around.  The round mullet haircut.  The proud smile she had when she finished.

S came out looking for our approval.  She made great eye contact.  She wanted to show us things, and would pull on our hands.  She would nod her head or say no to questions from a tv show.  She would try to tell us what things were.  Meh-wah for melon, sie-puh for Swiper, pwee-tee for pretty, etc.  We saw her coloring with one hand, shaking the other in the same motion when she colored, how she never crossed the midline of her body with her arms or legs, she always ran or jumped.

There are a lot of red flags I saw that I didn’t think were as off back then.  Seeing it now, the evidence is stark.  I’m so glad we got S help when we did.  But all this talk of S possibly having autism and other developmental disorders…there was plenty of evidence that ruled that out back then, too.  I finally can start putting to rest those doubts of what I missed or what others could be wrong about back then.  Maybe she is, maybe she isn’t….who knows.  But here are HOURS of different things that tell their own story.

Sometimes we really do have to go back to our instincts.  I can’t change whatever has happened or been missed, if anything, years ago.  I did what I thought we needed to do at that time, given the information we had at hand.  I really don’t think things could have changed for us back then.  I honestly don’t.  S should have gotten early intervention much sooner.  I should have consulted a speech pathologist long before we did.  But again, based on the information we had, our situation then, I don’t believe it could have been any different.  Looking at these videos, it only reaffirms that.

I’ve noticed a lot more children coming in to preschool classrooms with food allergies. My daughter was one of them. An article in Health Day News previews a new study put on by the US Centers for Disease Control and Prevention states that:

the number of children with food allergies has gone up 18 percent and the number seeking treatment for food allergy at emergency departments or hospitals has tripled since 1993.

As my daughter approached her first birthday we realized she had a severe dairy allergy. She developed hives just by touching food with even the slightest amount of milk in it. Even eating food encrusted with store-bought bread crumbs (which usually contain a small amount of buttermilk powder) would cause hives around her mouth. I was most terrified by the hives and swelling I might not be able to see in places like her tongue or throat.

Our entire household had to adjust our eating habits. Going out to dinner felt like playing Russian Roulette. Most of the wait-staff we encountered seemed annoyed by our in-depth questioning of the ingredients in each meal. It became clear that most people thought that a dairy allergy is the same as lactose intolerance, which may cause some indigestion or other less pleasant discomforts, but not any real harm. We learned to bring food with us where ever we went.

Then came time to put our daughter into child care. Again, I stressed the allergy issue, but only when I had to show the teachers how to use the epipen did they take the situation seriously.

My daughter was fortunate to have a very dedicated teacher who attended a workshop for early childhood educators on food allergies in children. She said the workshop completely opened her eyes to the severity of the situation and gave her a new appreciation for the issue. I immediately noticed changes. It was clear that all teachers were now carefully reading food labels. They were learning the hidden terms for dairy like casein and whey. I was able to sleep better at night.

Apparently I am not alone in my experience. This article goes on to state:

Although many people think of allergies as more of a nuisance than a serious health issue, food allergy in particular can be very serious, even life-threatening. The most common foods that people are allergic to include peanuts, tree nuts, milk, eggs, soy, shellfish, fish and wheat, according to the Food Allergy & Anaphylaxis Network.

By the time my daughter turned three, she had completely outgrown her dairy allergy, but her toddler teacher continues to be an advocate for children with food allergies in child care settings.

Here is a link to the Athsma and Allergy Foundation of America New England Chapter. In it you’ll find all kinds of information and tips for parent and child care providers on this important issue.

As a mother of a child with autism, I have found myself overwhelmed with the magnitude of information out in the universe.  My mind spins like the Earth orbitting on its axis.  At times you feel the same way, don’t you?  I know, there is so much research that you have to double check and triple check whether the information is valid or not.  You vascilate over whether you should try this proposed therapy or the other one.  You do all of this on top of the regular responsibilities that you have as a loving parent. 

Well one of my biggest issues in dealing with my son’s situation is advocating for him.  I find that his school district does not make it easy for parents to advocate for their child.  Many school administrators play on your ignorance, and then you find that your child is getting less than he or she deserves in the classroom.  Well, I am here to give you a helping hand on staying on top of what a school district can and cannot do when it comes to getting the services your child needs. 

1.  Talk to other parents who are already navigating the system.  Other special needs parents are a great source of information when it comes to dealing with the school system.

2.  Talk to special needs teachers.  You absolultely cannot go wrong here.  Teachers usually want what is best for the student.  Not only can a special needs teacher tell you how to get the services you child needs, but special needs teachers can give you a great insight on what exactly to do, and who to talk to get the ball rolling. 

3.  Check out reliable special needs websites.  Usually these websites speak to issues that are on a national level, it can still benefit you as you advocate for you child.  The more information  you have, the less the school system can discombobulate you.  Yes it does take time for you to navigate all the information that you find online, but isn’t your son/daughter worth it.  (Personally, I like www.wrightslaw.com).

If you are finding it difficult to advocate for your child, do not give up.  If you are not having any trouble navigating the special needs system in your school district, then great!  Not all schools administrators make it difficult for parents to advocate.  There are some really good school districts out here just as there are really bad ones.  I encourage you to move forward and do what is necessary to get the services your child needs.

This is a current account of a personal view inside a nursing home in 2009

Thanks for dropping by again.  I am glad that you came for this installment.

If you want the truth, it is here.  If you want to make a change please read and share with others.  Thanks for your time.

This is more than just my job.  This is more than just memories of times gone by and things that happened in the past, either distant or recent.  This is My Personal Story….read on.

I am a Personal Support Worker as you are well aware.  I am writing today about a very personal story, about a family member who is now in long term care.

I recently went to visit a family member who is now suffering from dementia.  I travelled a distance to visit.  I felt that I would be able to get a good grip on what kind of facility this was to live in, what kind of care was given, what kind of staff manned the shifts, and I went with a positive attitude.

I had already heard from another family member that this facility was old and not very appealing.  My response was…don’t tell me what the building looks like (although there are issues that do need addressing later in this blog) but instead…tell me what kind of people work there.  The people make the difference.  The PSWs, the foot solders, the front line health care workers…the people who will interact with my family member.

I arrived at my destination.  Yes, it was an older building, 50 or 60 years old.  Yes, it had small rooms, little space, and cramped bathrooms.  Yes, it had a stodgy old service elevator that had to bring residents up and down to meals on the main floor.  There were 5 floors of residents, the 6th was for storage.

Each floor had several rooms.  One or two were private, even having their own bathtub – nothing new and modern but yes, a bathtub.  Other rooms were semi private and one or two were three residents.

The look of the building was antiquated I grant you that.  Windows were the old fashioned sliding ones…but locked into place and still drafty when the wind blew…the whole setup was from years gone by but the staff had a good system for calling each other for help…and for answering the calls from residents.

The beds were ancient and not in the best shape, wheels not locked into place, (a safety hazard,) lumpy and curved mattresses, the side tables were old and scratched but at least clean.  The closets were tiny to say the least, and had bifold doors.  Everything looked like it needed a coat of paint, a bit of attention, but at least things were clean and tidy.

The room that my family member was in was very small and had a cheesecloth type curtain between the beds…I would hardly call it a “privacy curtain”.

The curtains on the window were from the era of “sleepytime motel” ugly sackcloth, looked kind of brown and unappealing, not to mention downright depressing.

There was one sink and a tiny ledge of space that is supposed to accomodate some personal items for two residents.  Not quite sure how that is going to work out for them as my family member was in this room alone and there was not an inch left for anyone else to put their toothbrush or soap.

Despite the problems I saw, despite the well worn building, I concentrated my focus on the staff.

I was right!  They made the difference.  The front line workers made me like this yawning old building and it’s bleak interior.  They smiled, they were helpful and they talked to you, they observed their residents at meals, noted their intake…they transported people back to their rooms when they began banging their cups on their table top trays and could not be dissuaded from that.  They spoke in a kind manner to their residents with smiles, soft words, a touch or hug of the shoulder, a reassurance that they would return to check on them.

The staff really paid attention to the residents.  They were sweet and kind.  They were like family.  I noted that they urged their residents to eat when they were not.  I noted that they Instantly changed the consistency of the food on the plate if the resident was struggling to get it down because it was not chopped enough, or needed to be pureed, by bringing it to the immediate attention of the charge nurse.  I noted that they had relationships with their residents.  I noted that the residents “liked” their caregivers and were treated like the important people they are.

I saw that the meals were tasty.  I ate them along with my family member.  They were a lot like meals served at home, warm, tasty, and plentiful.  I noticed that dietary staff came along and offered more food to those who wanted it.  That doesn’t happen everywhere or at every meal.  It was nice to see that bigger appetites were accommodated, or residents who eat poorly one day can make up for it another day.

I gave a note and some treats to the staff, thanking them for their personal touch, their caring way, congratulated them on doing a good job for their residents.

More than one member of the staff came up to me and said….how kind I was to have given them something, to have written a few words on a card.  They told me that they never hear that from their superiors,  and that the management has no idea of their work load, of how stressed they are, and how short their time is for the residents they care for.

Not only the Personal Support Workers, but the other departments in this facility were making a wonderful team effort to make sure residents got to their meals…remember, a huge elevator, that holds maybe 5 or 6 residents, having to go up and down every day for meals.  I was very pleased to see that all departments made sure these residents were transported…not just the PSWs, but the maintenance person, the laundry person, everyone did a little bit and it surely made a difference for the PSWs….and for the residents.

Not only did the dietary staff serve meals to residents, but they also extended themselves in a personal way, they noted those who weren’t eating, or gave a heads up to the charge nurse that someone needed checking for one reason or another.  It gave me hope that a lot of good and very positive things were happening in this facility.

But still, despite all the wonderful people I saw, the team work, even the activation department doing a great job for the residents….still there were problems.

It boils down to one serious issue.   TIME!
There is never enough TIME!   There just aren’t enough hands! This is the big problem!

During the few days I spent with the family member I visited….I noticed that she was left on her own a lot, that they thought she was independant, that she was able to take care of herself.  I watched each day when I arrived that she was alone in her room a lot, that occasionally a staff member came in to check, but because they knew I was visiting they didn’t check as often.  I was there so I helped her with her hair, fixed her makeup, made sure she was dressed nicely and escorted her to meals and activities.

I noticed my family member had the same clothes on day after day, although she was taking care of herself in a way, doing her own morning and evening care, and she presented well when dressed, I knew she was not getting the care she needed.

I noted that her clothing was squirreled away into various places in the room, nightgowns , blouses, other items balled up and thrown in the bottom of the neighbouring closet, bedside table, the bottom of her drawers, her closet, clothing that should have been put in laundry….

I noted that her socks were the same day after day.  I took her socks off, and saw that her skin was dry and flaking, that her ankles were swollen, that she was in a sense being neglected.

I creamed her legs, I changed her socks, I threw her clothing in the laundry.  I brought her skin and ankle concerns to the charge nurse, who told the PSW, who came to me and said they didn’t know!
WHY?

Not enough time.  Too many others to care for, too many lifts to do, too many transfers to accomplish, too many others who required 100% personal care. An assumtion that the resident was self sufficient.  There is another thing to know about being a good PSW.  Never assume that things are done unless you do it yourself.  Never assume that people know things until you share it with them.  We all know what assuming does for us.  It makes an  A** out of You and Me!
It is true.  Always ask questions, always share information, always make sure everything is taken care of.  Then you can go home with a good feeling about what you did today.

Issues like swollen ankles are important and can be serious signs of other conditions and problems that should be addressed, positioning, medication, are there problems, should the doctor be called to check her out?

I wasn’t angry.  I was nice about bringing this all to the charge nurse.  I was kind and understanding with the PSWs who were busy and never had enough time.

I also noticed that my family member was as content as she would ever be.  I knew that the staff were being nice to her.  I knew that this was the best I would get.  To have a family member at a distance and know that they are cared for by people with a heart….that meant a lot.

To have a realistic work load for a PSW would make such a difference for the residents.

To have to leave my family member in this LTC….was hard enough, but I knew that it was all I would get, it was all she would get.

To know that my family member could not operate the elevator herself, did not know where she was or who people around her were….to know that she was at the mercy of others….was made easy by seeing and meeting the people who worked there.  We have all had to leave our helpless little children with caregivers due to being working parents…..but try leaving an adult family member with people you don’t know….and don’t you and the resident deserve to know that your caregivers are trained, qualified, prepared, on guard, good people, compassionate and caring….and Regulated?

I have been a PSW who attended residents whose family live so far away that they can only come once a year or so….like me.  I know what it means when they say they appreciate me, they trust me to be as good to their family member or parent as I can be.  I know the responsibility and the trust they put in me.  I had to do the same.  I had to walk away and put trust in the staff that cared for my family member.

My family member, who now does not really know me.
Who saw me every day and it was like the first day I arrived.
Who no longer relates to the world and cannot carry on a conversation.
Whose teddy bear has become her best friend.
Who can no longer figure out if it is day or night.
Who cannot figure out why she cannot get the black marks off the 60 year old floor.
Who cannot remember if she ate, went to the bathroom or what season it is.
Who lives her life in a ten minute ever repeating loop.
Who hoards jams, peanut butter and crackers, margarine and plastic knives as if there is a shortage of food.
Who cannot know who her friends or enemies are.
Who doesn’t understand why she can’t have a needle and thread to fix the hole in the privacy curtain.
Who cannot remember her children, birthdays, friends, how to read, watch tv or listen to the radio
Who has no quality of life and wishes to go to her reward in heaven (despite her confusion she says this)
Who thinks that male PSWs are doctors and that she works with them.
Who is at the mercy of those who care for her around the clock.

I have to trust that she will be taken care of.
I have a mission to share with the world
Care for your elderly, your infirm, your loved ones.
Care as a PSW for your clients, residents as if they were your family….because in a way…You Are!

If this touches your heart – please pass it on.

This family member is my Mother.
Please take good care of her.
Thank you.

A True Story from a Real PSW