Saturday, March 29, 2014

Spring Cleaning

Spring is in the air and there are people cleaning and organizing everywhere...

A little known secret of how to snag invaluable, previously deemed "useless", items to use for therapy and play; whether it be sensory items or traditional toys that can be utilized with our children who have limited mobility or need extra encouragement:

Freecycle's mission is simple: The Freecycle Network™ is made up of 5,121 groups with 7,135,811 members around the world. It's a grassroots and entirely nonprofit movement of people who are giving (and getting) stuff for free in their own towns. It's all about reuse and keeping good stuff out of landfills. Each local group is moderated by local volunteers (them's good people). Membership is free. 

Not only have I received items that have given Brayden a greater quality of life: rope lights, sensory materials such as fur or sand paper, "simple" infant toys with lights and music, copper wire for adapting battery operated items, ball pit balls, scrap materials for play mats and bean bag covers, etc; but we have also received perfectly good furniture, kitchenware, bath items, yard essentials, and even FOOD from the immensely generous Freecycle community!

No, I have not received any sort of commission for sharing this global-wide mission with all of you. I am simply sharing from experience in several communities where we benefited from Freecycle members' generosity. 

If you're seeking specific items or need to unload some clutter, sign up with Freecycle or find your local group via Facebook; you'll be amazed at what you gain!

Monday, March 24, 2014

Bee-ography Monday: Carson

Thank you to Carson's mommy for sharing a synopsis of his amazing journey with us for his birthday on March 20th...

"4 months into my second pregnancy I was told by obstetricians that the baby growing inside me had a rare cephalic disorder called hydranencephaly. I was told I should have an abortion because he would be in a vegetative state if he lived..I do not believe in abortions. I told the doctors that was NOT an option...We were told his brain didn't develop because he had a stroke sometime during the past couple months of pregnancy.. My family and I was told that my baby MIGHT live a couple weeks to a couple months IF he made it through delivery..over the next 5 months We were given no hope that this tiny boy would ever have the chance to live a full life outside the safe haven of my womb...

This day 5 years ago my family and I drove to UK Hospital for the birth of my second son, Carson Thomas. At 8:37pm my son breathed his first breathe.He weighed in at 7lbs 4oz and 20in long..He was perfect! On the day he was released from the hospital the doctor told me before we left to take care of Carson the best I could and to go ahead and plan for his funeral..I have to say that I did part of what the doctor said I took the best care of my son that I could.. I bathed him, fed him, changed his diapers, and for the next 10 months of his life we were almost inseparable (only because he screamed and cried a lot and I was the one who could comfort him). I lived the first 10 months of his life thinking I was going to lose my baby to a disorder that not many people heard of..
After that 10 months I have looked at him as nothing short of a miracle and a blessing, living each day that I have with him to the fullest with no regrets! My family, friends and I prayed for this little boy everyday...

Today Carson is a healthy 5 yr old boy who is very conscious of who is around, loves his family, loves school, his teachers, therapists, being outside and rough housing like any other boy! This tiny boy has scared me more times than I care to count. There have been many trips to the ER that I thought he wouldn't be coming home with me...But this tiny boy who has never spoken a word has impacted and changed more hearts and lives than I know ( Especially mine). If anyone doesn't believe in God and miracles you need to look at the pics I have posted and remember doctors gave Carson no hope and no chance at any kind of life . I can not thank and praise God enough for letting me keep my angel in disguise a little longer! last but not least HAPPY 5th BIRTHDAY Carson! Your Momma and Alex loves you to the moon and back! I am blessed that I get to be your mommy! May God bless you with many more years baby boy!

Sunday, March 16, 2014

Brain Awareness Week: Believe in the Impossible!

"Without a brain, you're a shell. A vegetable. That's not up for debate. You need a brain to be human."

...why greater education efforts and awareness campaigns are crucial to families facing a diagnosis of hydranencephaly, or any condition deemed "incompatible with life"...

"Life is impossible without a brain..."

I hope more individuals learn to "Believe in the Impossible!"

While hydranencephaly is often misdiagnosed as several different cephalic conditions, depending on the medical professional to look at the brain scan images, there are a specific few that are most often confused. So, let me begin by briefly comparing those to clarify the differences between anencephaly, hydrocephalus, and the condition we represent, hydranencephaly. 

Anencephaly is the absence of a major portion of the brain (most often noted in definition as the absence of the telencephalon), as well as the skull and scalp, that occurs during embryonic development. This condition is most often the condition first to mind when a child is said to have "no brain." 

Hydrocephalus is the accumulation of excess cerebrospinal fluid (CSF) in the ventricles (cavities) of the brain. Often the brain itself can be affected due to the excess pressure that can accumulate if hydrocephalus goes without proper management; however, in several cases the affect on the brain itself is minimal. 

Hydranencephaly is the absence of the cerebral hemispheres which are replaced with cerebrospinal fluid (CSF). Coincidentally, another term for the cerebral hemispheres is the telencephalon (YES, the SAME portion of the brain that is absent in the presentation of anencephaly.. thus, the confusion). Not always, but often hydrocephalus occurs as well.

With those lines defined, here are some amazing instances of living without a brain:

~"I'm sorry to tell you, but you've been living without a brain for the last 40 years."

Imagine that you are a neuroradiologist looking at MRI scans of brains. You’re drinking your vanilla mocha frappuccino and flipping through images, making diagnoses. A tumor here, a stroke there, a normal brain here, encephalitis there.

Suddenly you come across a scan showing a giant hole where 75% of the brain should be. Mostly black space where important brain parts normally are.  

You'd think to yourself, "Surely this has to be someone in a severe coma who will never wake up again."
It turns out you’d be wrong.

This brain, in fact, belongs to a well adjusted and, more importantly, conscious man who to this day enjoys a comfortable middle class life.

Despite having dramatically enlarged ventricles (reservoirs of liquid that act as the sewer system of the brain) that squished out most of his normal neural tissue when he was young, this gentleman somehow managed to grow up normally, get an education, a middle class job, a wife and kids.

All of these seemingly normal accomplishments while having less than half of the brain volume that you or I might have in our skulls.

Although at this point who knows. We should get our heads scanned just to check." ~"Do We Really Need a Brain?"

~Back in 1980, an article appeared in Science, one of the world’s top journals, describing the work of John Lorber, a professor of pediatrics at University of Sheffield in England who had conducted a number of studies on individuals who were afflicted with hydrocephalus and came up with some remarkable findings. Lorber had subjected his patients to CAT scans and found that while most of them were mentally impaired, some, even when their brain filled no more than 5% of the cranial cavity led normal lives. In one documented case, a colleague referred a young man to Lorber because of his unusually large head which apparently was not causing him any difficulty. A CAT scan revealed a skull lined with about a millimeter thick layer of brain tissue and filled with cerebrospinal fluid. Of course the brain stem which sits at the bottom of the brain and connects to the spine was normal. The rest of the brain is obviously capable of some remarkable feats, with one part able to compensate for deficiencies in another. The thin layer of brain cells was certainly up to the task of providing the necessary brain power, he had a high IQ of 126 and had a first class honours degree in mathematics." ~"Is it true you can live without a brain?" Published by Alexandra Pires-Ménard

~The neurologist at the University of Marseille followed a 44-year old patient who had complained of a weakness in his left leg. He sent him for a brain scan. When the doctor saw the magnetic resonance image of the man’s brain, he was stunned. In fact there was not much of a brain to be seen. Most of the skull cavity was taken up by fluid, with a smattering of brain tissue lining the inside of the skull. The man should have been severely resulted, and yet he was not mentally disabled, holding down a job as a civil servant. Subsequent tests showed his IQ to be below normal which had not impaired his ability to carry out tasks at the local tax office where he was employed. The man’s head was filled with cerebrospinal fluid which normally bathes the brain and spinal cord and accumulates in cavities in the brain called ventricles. The French patient had been born with hydrocephalus and was surgically treated as an infant by implanting a shunt into the brain to drain away excess fluid into the blood. He had developed essentially normally oblivious of the fact that his head was essentially filled with fluid until the problem with his leg cropped up. A neurosurgeon inserted another shunt and within weeks the man’s neurological problems disappeared and he was back at work in the tax office. ~"Is it true you can live without a brain?" Published by Alexandra Pires-Ménard

~On February 19, 2009, an amazing little sweetie named Faith Hope Walker was born at 12:23... crying. Her incredible story, shared by her mommy after diagnosis with anencephaly in utero, was one of the first blogs I started following after having Brayden. Reading my way through her days gave me such inspiration, while motivating me to begin sharing our own journey with the goal of changing the many misconceptions that existed in regards to conditions like anencephaly and hydranencephaly. I was determined to open the minds of the people who were commenting on her heart felt posts so negatively; the people who were unable to see the possibilities that existed despite medical prognosis. "I am so thankful for the 53 weeks that she spent here on earth. That's right, 53 weeks: 40 weeks in my belly and 13 in my arms. One year and seven days.." ~mommy, Myah at The Story of baby Faith Hope "At my 19-week ultrasound, I was told that something was wrong with my baby's head. The doctor said that my baby had no brain. I'm sure most people wouldn't have even considered her to be alive. I was told that I could safely continue my pregnancy and allow her to die naturally, or I could induce labour and terminate the pregnancy. I chose to carry my baby to term for one simple reason: love."

Hard to believe that there is anything negative to say about a loving mother sharing the life of her child.. let alone verbally attacking a sweet, innocent little baby. Unfortunately, harsh debates are all over the internet and I have personally encountered several during my five years of involvement. Here are a few, just to give you all an idea of the crass adversity these families face:

~Is "lives" really the correct term?  
"Subsists" seems, sadly, more appropriate.

~Poll: Your baby is born without a brain, which would you do?
Raise it: 7.7% (53) Kill it: 92.2% (638)

~The correct medical term for the Baby's condition is Anencephaly. And we see it at the hospital infrequently. Philosophically, what is a person who cannot recognize themselves as alive or dead, awake or asleep and is powered only by a heartbeat and expensive medication? They look human on the outside but maybe that's enough for some people. Mothers are fascinating.

...deny care to that lifeform and channel funds towards children who have a chance isn't murder if it isn't human

Sometimes there is some welcomed logic found among the ignorance of those who just don't know:

~"...the child wasn't born fully without a brain. He still had a brain stem, which presumably controlled organ and bodily functions. The thing is, the fact that he has a brain stem means we cannot say decisively and with 100% certainty what he is and isn't capable of experiencing. We know less about the human brain than we do the recesses of outer space. We do know that people have suffered incredible, devastating trauma to the brain, and yet managed to continue carrying out some form of cognition. People caught in freak accidents, people injured in wars and conflicts, people we would by all rights expect to be brain-dead vegetables, but have somehow managed to carry on thinking in some manner. The brain seems to have some limited ability to rewire itself based on need and circumstance, to be able to bypass damaged neurological matter, and rewrite existing matter to be able to allow some form of cognition to continue. Therefore, we simply do not know to what extent the boy is unable to cogitate, because we do not know to what extent the brain stem has adapted to get by without the higher cortex. While it's obvious that there wouldn't be much chance for higher cognition, the fact that the boy seemed to exhibit some signs of response when stimulated by his parents means we cannot rule out that there may have been some simple form of awareness. We will never know, because we are unable to look inside other people's heads and see how they think, but the simple fact that it would be possible means that any talk of termination should be done with utter seriousness, after having thought through all the consequences, rather than being chucked out as a standard response."

~"What behavioural signs did he exhibit which to you suggested misery? If his brain stem is unable to carry out any form of cognitive function, how could he be expected to be capable of misery? And if it does show some signs of adapting to a basic form of cognition, how do we know that he isn't experiencing contentment instead of misery? He is essentially a baby being provided with all the things that any baby could desire: food, warmth, shelter, protection, love, attention... surely we should assume, given the evidence, that if he is capable of any form of cognition, it would tend towards contentment and satisfaction, rather than misery and suffering?"

So, you take the good with the bad... and fortunately the good far outweighs the bad! But we must keep working to encourage individuals to educate themselves before making such crass judgments on human lives. 

Saturday, March 15, 2014

BUZZ: Happy 6th Bee-Day!

We NEED Your Help: Pediatric Brain Mapping Project

Recently, we have developed a working relationship with Children's Neurobiological Solutions Foundation (CNS Foundation). For those unfamiliar with this amazing nonprofit organization, CNS ultimately provides a master key to our success: an established network to connect our organization with the individuals (leaders in medical research) who
can truly make the difference we are striving for. They "facilitate research on the developing brain, provide information and resources to impacted families, and work with other patient advocates to raise public awareness about the importance of pediatric neurological research to the discovery of treatments and cures."

The following request is an important one to not only Global Hydranencephaly Foundation, but other communities across the globe who benefit from continued pediatric neurology advancements and brain research! Please consider joining the latest efforts by our new friends at CNS Foundation in building the Pediatric Brain Mapping Project.

"There are more than 14 million children living in the US with one of more than 600 different neurological conditions. For members of Congress and other policymakers, numbers matter. Help CNS Foundation Shine A Light On An Invisible Population!"

Their goal is to add 10,000 new voices to the Pediatric Brain Mapping Project by the close of Brain Awareness Week on March 16! This project is "an initiative to identify the millions of children and young adults living with one of the more than 600 different pediatric neurological conditions and the organizations that support them. This population is invisible and underrepresented. It’s critical that we make their presence and our organizations known to policy makers, pharmaceutical companies, and all the other funders of science who often ignore the importance of studying the developing brain."

The Map creates a focal point for uniting and mobilizing patient advocacy efforts and will eventually lay the groundwork for a Natural History Database of Pediatric Neurological Diseases that scientists can use to find treatments and cures. 

With the addition of your information to the Map, GHF and other like-minded organizations will gain access to the latest in relevant scientific news and have the opportunity to participate in a virtual workshop series sponsored by CNS. This series will allow networked organizations the opportunity to discuss latest developments in pediatric neurology research and play an active role in working towards future necessary advancements.

So, please consider joining the Brain Mapping Project and being one of those 10,000 new voices needed to make an impact. You can also like CNS Foundation on Facebook or follow them on Twitter to learn more about their efforts! While you're there, follow +Global Hydranencephaly Foundation on Facebook & Twitter as well!

Thank you, in advance, for your support! 

Tuesday, March 11, 2014

BEE-AWARE: Brain Aware

Yesterday marked the start of this year's Brain Awareness Week...

At one of the following events is where I could have been:

Students unlock the mysteries of the brain with NIH scientists

NIH celebrates Brain Awareness Week 2014

Hundreds of middle school students from the Washington, D.C., area will visit the National Museum of Health and Medicine External Web Site Policy in Silver Spring, Md. this week for a special brain-bending experience. Alongside scientists from seven institutes of the National Institutes of Health, these students will become neuroscientists for a day as part of the 14th annual Brain Awareness Week celebration at the museum.

Brain Awareness Week (March 10 – 16) is an annual global public outreach partnership of government agencies, universities, hospitals, patient advocacy groups, scientific societies, service organizations, and schools. The event was started nearly two decades ago by the Dana Alliance for Brain Initiatives, a nonprofit organization of over 300 leading neuroscientists, as a campaign to increase public awareness of the progress and benefits of brain research.

“Brain Awareness Week is a great opportunity for young people to connect with NIH scientists and explore the human brain in a way that is truly hands-on,” said Thomas R. Insel, M.D., director of the National Institute of Mental Health (NIMH). “We hope to make this event a memorable experience that will inspire the next generation of brain pioneers.”

NIH activities will include:

NIMH: See YOUR BRAIN in Action, Students will see how the brain and spinal cord work together to control emotions and physical well-being. They will observe recordings of the electrical activity generated by muscles in their own arms and fingers and gain a deeper understanding of the human nervous system.
National Eye Institute (NEI): More than Meets the Eye, Students will learn how the brain and eyes work together to help us see. NEI scientists will then share the science behind optical illusions to reveal how the complex circuitry in the brain can sometimes fool us into seeing things that are not really there.
National Institute on Aging (NIA): Mysteries of the Brain, Students will investigate how we learn about human brains. NIA scientists will show a video of mice performing a memory task and then engage students in a discussion of how the brain can benefit from a healthy diet, mental stimulation and exercise—some of the interventions being tested today as potential means to delay or prevent memory disorders.
National Institute on Alcohol Abuse and Alcoholism: Cool Spot Carnival, Students will explore how alcohol interferes with brain development, sensory perception, movement, and balance. They will learn that even though teens may not feel alcohol’s effects as immediately as do older individuals, alcohol still affects their functioning and can put them at serious risk.
Eunice Kennedy Shriver National Institute of Child Health and Human Development: Bionics: Creating the “Six Million Dollar Man” Students will learn about the advancement of artificial limbs and assistive technology throughout history. They will interact with state of the art myoelectric control for prosthetic limbs and see how the power of the brain can be used to restore function to the human body after disease or injury.
National Institute on Drug Abuse: NIDA Brain Derby, Students will play an interactive computer-based game called Brain Derby. Teams of students will have the opportunity to earn Brain Scientist certificates by correctly answering questions related to how abused drugs act in the brain and body.
National Institute of Neurological Disorders and Stroke (NINDS): Brain Lobe-oratorium, Students will discover the unique features of each of the four lobes of the human brain by interacting with colorful life-size brain models. NINDS scientists will help students learn about how each lobe contributes to perception, thinking, personality and behavior.

Instead I spent my morning, noon, and night remembering my sweet little man, Brayden, and why this brain stuff is such a HUGE part of me... his big light is shining so very bright right now as we kick off the start of our efforts as an official nonprofit organization.

I spent my morning working with a little girl who is an example of why we need to bring greater awareness of the possibilities that exist for those living with neuro-disorders.. everyone should know how amazing she is!

I spent the afternoon and night working endless hours on some awareness campaign efforts, chatting with families who give me more reasons to "Believe in the Impossible!" and feeling motivated by my decision to continue on this crazy obsession with all things brain.

Bee-AWARE: BRAIN Aware! Visit our friends at The Dana Foundation:

Friday, March 7, 2014

Fact-BUZZ Friday: Finally!

996 days

that's 2 years, 8 months, and 20 days


a little over 142 weeks

which is a whopping 23,904 hours

or 1,434,240 minutes

and a seemingly never-ending 86,054,400 seconds.

After all this time spent:

watching big-time goals drop, 
discovering crucial paperwork lost in transit, 
deciphering instances of failed communication, 
smiling through the frustrations with ourselves and definitely others, 
making countless phone calls DAILY for weeks on end,
breathing calmly through several heated "discussions" which ended with, "Let me speak with your supervisor," or simply *click*
sob-sounding letters written,
chatting with legal professionals who would only help enough to make their help more of a hindrance before turning on the cash ticker,
shedding tears while battling the urge to just give up,

we finally found SUCCESS.

GHF became a nonprofit corporation on June 14, 2011; yesterday we received the letter we had been waiting all this time for...

"Dear Applicant, 
We are pleased to inform you that upon review of your application for tax exempt status we have determined that you are exempt from Federal income tax under section 501(c)(3) of the Internal Revenue Code. Contributions to you are deductible under section 170 of the code. You are also qualified to receive tax deductible bequests, devises, transfers or gifts under section 2055, 2106, or 2522 of the Code. We determined that you are a public charity under the Codes: 170(b)(1)(A)(vi). Sincerely, Director of Exempt Organizations"

What does this mean?

It means our mission is EXPLODING...

we  now are eligible to apply for large grants that will make it possible for GHF to provide the individualized support we have been financially restricted from providing.

we will better be able to support the families we continue to network with across the globe.

we now can make a greater impact within the medical community as a recognized charity.

we can initiate completion of our previous challenge to successfully rewrite the definition of hydranencephaly across the web, in magazines and professional journals, in medical textbooks, government agency descriptions, and the resource and information listings for already long-established organizations

and the efforts have no end in sight!

Helps us share the message to 
"Believe in the Impossible!"

Thursday, March 6, 2014

Thought-Filled Thursday: Humor & the Hospital

This great article, compliments of our friends at Complex Child E-Magazine and founder Susan Agrawal, has lapped the social media special needs circles a bit over the past couple of days. After reading this, be sure to head on over to the e-zine for more amazing articles full of information!

photo courtesy of Mommy Bags Blog

With this long winter season being the season of many "funks": respiratory complications like pneumonia or bronchitis, flu bugs, and various other cold-loving attack bugs; this is a worthy read.

by Susan Agrawal

We all know that hospitalizations seem to happen at the worst possible times.  In order to prevent these hospitalizations, we offer the following list of 10 {article says 10, however the title and list include 8... thought I'd make note since this initially threw me off for a moment} things you can do that will help you avoid virtually any hospitalization.

1.  Never schedule a date night or vacation.  Have you noticed that hospitalizations only occur when you have scheduled something really important and unusual, like a date night or vacation?  Yeah, just stop scheduling those.  They are like beacons on your calendar that scream, “hospital.”

2.  Always pack a bag.  Whenever you go to an appointment, pretend your child will be admitted and pack your bags.  As long as you have your bags with you, you will for sure avoid getting admitted.  If you want to be extra sure you will not be admitted, keep the bag packed and ready at all times, preferably in the car or van.

3.  Always have clean underwear available at all times for every member of your family.  Hospitalizations only occur when a member of your family runs out of clean underwear.  Just as long as you have clean underwear for everybody, you will be just fine at home.  The minute that all your underwear is crusty and too disgusting to see the light of day will be the minute you need to go to the hospital.

4.  Hit menopause or take the pill all the time.  Hospitalizations only happen during your period.  The only way to avoid them is to get rid of your monthly friend.  Period.

5.  Always catch up on your sleep.  Hospitalizations only occur when you haven’t slept for three days and are too incoherent to provide a decent medical history.  As long as you are caught up on sleep, you will never have to go to the hospital.  Note:  virtually no one is able to follow this particular guideline.

6.  Know your doctor’s off-day and vacation schedule.  Children only get sick when their doctors are out-of-town, on vacation, or out-of-work for some reason.  If you know the schedule of your child’s doctor, you can create a back-up doctor plan, thereby preventing a hospitalization!

7.  Never throw away any piece of equipment or the random supplies the home health agency accidentally stuck in your delivery.  As soon as you throw something away, that will be the one and only item you need to prevent your child from being hospitalized.  Yes, your friends may start calling you a hoarder, but when your baby suddenly starts wheezing and you have four neb masks in three different sizes, you will be ever so thankful that you became an official medical supply hoarder.

8.  Move to Uruguay.  Is it snowing?  A hurricane?  An earthquake?  Tidal wave?  Volcanic eruption?  Wildfire?  Not if you are in Uruguay, which Business Insider ranked as the country with the least natural disasters.  Hospitalizations are only needed during bad weather or natural disasters.  In order to prevent them, you must move to Uruguay.  Of course, we are not even sure Uruguay has a pediatric academic medical center, but you probably won’t need it anyway after following all the suggestions in this article.

Wednesday, March 5, 2014

Word-Filled Wednesday: Spread the Word

Grab yourselves a dictionary or perhaps you should invest in a thesaurus?

thesaurus: noun a book that lists words in groups of synonyms and related concepts.
Image by graphic artist, Alison Rowan
available for purchase HERE

By John C. McGinley, actor & ambassador to The Special Olympics "Spread the Word to End the Word" efforts and most valued as a father, one of his children greatly influencing this publication shared via The Huffington Post

We are free to express ourselves (in accordance with the law), just about any way that we choose to. I do not enjoy hearing the "R" word: "retard" and "retarded."

And I will tell you why...

As these two words are now commonly used? They are (at all times), meant as a euphemistic put-down. And the genesis of the "put-down" itself is based on disparaging a population of special needs individuals who have always been viewed as inferior to the person mouthing the words: "retard" and "retarded."

What does it mean if one's best friend is acting "retarded?" He or she is behaving like a crazy person. Or, conducting him- or herself like a whack job. Far, far afield of any recognizable vestige of that person's typical or acceptable comportment.

When a party is said to be "retarded?" That party is understood to be insane, stupid or just plain ridiculous. When a friend tells another friend to "stop being such a retard," the admonishment is targeting an unflattering or all too simple-minded behavior that is only marginally tolerable when exhibited even by "those" people -- who damn sure aren't like "us"!

When the suffix "-tard" is added on to any adjective or noun, the resulting conjunction is intended to render a word that will connote an inferior, idiotic or dumber-than-dirt, juxtaposed quantity.

As one looks more closely at the contemporary use of the words -- "retard," "retarded" and the suffix "-tard" -- the pattern that clearly starts to present is simply this: When employing this specific language, the objective is to separate and distinguish the "user" from those being "used." The user in this case, of course, is the person spewing the words: "retard," "retarded" and "-tard." Those being used are the original population of special needs individuals who served as the catalyst for this kind of disparaging vitriol in the first place. They are those kids who ride on the smaller school bus. The ones who have personal space, proximity issues. The ones who talk funny. The ones with flat faces. The ones who drool. The ones who talk to themselves. And most importantly, many of those with intellectual disabilities are defenseless to this word.

Other populations that have been used by the users have and do include: blacks, Jews, homosexuals, lesbians, Italians, Latins, the Irish and women, just to name a few.

Whenever any of these populations are denigrated or used by the users? It is wrong. And the used will take action to stop being used. But, because the casual use of the words: "retard," "retarded" and the suffix "-tard" have now become so deeply and passively ingrained in the contemporary vernacular? The insidious stigma that is perpetuated by the words indifferent application has been prosaically sanitized into a blasé "toss-off" in delivery and insensitive intent. And yet, however blithe the everyday practice of spicing up one's speech with the words "retard," "retarded" and the suffix "-tard" has become? The (presumably) unintended result is still the same. A population of people, who has never done anything to harm anyone, is circuitously targeted and suffers from a trickle-down discrimination that is very real and very painful.

There is an old saying that has been heard on playgrounds around this country for years and years. And it goes like this: "Sticks and stones will break my bones, but names will never hurt me!"

Even those of us with the very thickest of skin, the stiffest of upper lips and the strongest of will, have been hurt deeply by malicious language spoken in caustic and barbed tongue. Words hurt. They do. They always have. And they always will.

Even for those of us who are perfectly capable of defending ourselves and self-advocating, when we have suffered a verbal assault? The wounds that some words inflict on us are sometimes almost impossible to reconcile. Now try to imagine a world where you could not use any kind of reciprocal language to object to an absorbed verbal offense, because you simply did not have the tools to form the syllables required to defend yourself?

That would stink! And it would be a really, really hard way to live your life. I do not enjoy hearing the "R" word. "Retard" and "Retarded." And in the interest of tolerance and maybe all of us trying to get along a little better? I have a very low-maintenance suggestion. Perhaps next time you feel compelled to use the words "retard," "retarded" or the suffix "-tard?" Stop. Just for a second. And see if sprinkling your language with love and compassion, doesn't lead you to discovering a new, different and possibly better way of saying the exact same thing? And I am not talking about some hippy-dippy, woo-woo, West Coast, granola eating, new age, blah, blah, blah. Okay?

All I am suggesting is that an alternative to these hurtful words might be found in a greater reliance on love, compassion and grace.

This post is part of a series produced by The Huffington Post and the Special Olympics in conjunction with Spread the Word to End the Word awareness day on Wednesday, March 5. To find out more about the Spread the Word campaign, please visit the website. Join us in taking the pledge at

Follow John C. McGinley on Twitter: