(not so) Common Sense

Generally speaking, humans are highly evolved.  As far as brains go, we are at the top of the evolutionary ladder.

As such, one would assume that it would be very difficult to fool us.  We would never fall for media trickery, pseudo-science, or political dishonesty. Right?

(Awkward pause…)

Well, I don’t know about you, but I’m feeling slightly red-faced right now.

The somewhat embarrassing truth is, for such a highly evolved species, we are quite gullible.  We accept things as fact with very little context.  Headlines and memes are used to support our opinions as opposed to genuine research and inquiry. We accept reporting from obviously biased news sources.

Worst of all, we put our faith in our government, and its agencies, thinking they have our best interests in mind when creating policies and regulations.

Spoiler alert: they don’t.

I live in West Virginia, a beautiful state full of good -hearted people.  It is also a state full of poor, unemployed, struggling people.  Our primary industry, coal, is dying, if not dead.  Most unfortunately, we are leading the nation in the opioid epidemic.

This beautiful state has been poisoned.  First is was Oxycontin and all of its cousins. Now, because pills became so expensive, heroin has made a comeback. The most infuriating aspect of all of this is that the drugs made their way into West Virginia on a prescription form.

We all sat here and watched it happen.  We enabled.  We participated.  Why? Because these were FDA approved drugs.  The government, in other words, told us to go ahead and take these drugs.  They handed us that scary paper with all of the warnings and indications and sent us on our way.

We see how that turned out.

I’m not writing about the opioid epidemic, although I certainly could.  I’m really not even writing about government corruption or the prescription pill pandemic in this country.

I’m writing because “we the people” are swallowing something infinitely worse than a prescription painkiller.

We are swallowing a load of crap.

We are swallowing the belief that the FDA is acting in the best interest of the people of this state and, indeed, this entire country.  We have convinced ourselves the government knows what is best for us.  We are errant schoolchildren who need Big Daddy to correct us upon our path and set us right.

Is that what this country was founded upon? The need of constant government interference? Think about it–they tell us what to feed our children, what to let them watch, they tell us what to eat and what to think and, of course, how to medicate ourselves.  They even tell us where we can and cannot buy our milk.  (Think I’m kidding? Do a little research into legislation concerning raw milk.)

I’m as guilty as everyone else.  Like us all, I didn’t so much agree to these things as just passively let them happen, but at the end of the road, the mode of travel is somewhat irrelevant, wouldn’t you say?

And so here we are.

Now my interest is slightly more than passive.  We are fighting epilepsy in this house, and when I say fighting it, baby, I mean fighting. We knock it down, it gets back up, more determined and sadistic than before.  I’m afraid we’re losing.  I don’t know what comes next.  Every day I feel like I’m running out of options.

Can I count on my government to help me? Another spoiler: no.

The sad fact is just the opposite.  My government is opposing me.  It is trying to keep me down and keep me from fighting for my daughter.  It seems to want epilepsy to win.  Of course no individual member of any government would admit to such a thing, but The Grandparents taught me that truth lies in the actions of a person, not the words.

The actions of the people in the government of my state and the whole country tell me a story that makes me sick.

It’s a story of men and women in positions of power groveling to big business, particularly Big Pharma, and I mean groveling, practically licking the soles of their filthy shoes, just to keep the dollars rolling in.  Our government is run by lobbyists and money.  All intentions of those first Americans who fled from tyranny are gone.

And we have allowed it to happen.

It isn’t too late to start changing things.  Passivity needs to come to an end.  That’s it in a nutshell.  We need to vote, we need to call, we need to write, we need to speak!!  We need to stop sitting back and waiting for other people to fight our fights and fix our problems.  We need to have our own backs.

I’m going to keep fighting for my daughter.  I’m going to fight for the right to treat her epilepsy with a plant if need be, regardless of the stigma that plant has gained because of a media campaign so many years ago.  I’m going to use my highly evolved brain and science and logic rather than the media and government to make my decisions.  I should have that right.  So many fought and died to give me that right, and I intend to make sure their sacrifice was not in vain.

Won’t you join me?


 

 

This is the first in my series about medical marijuana.  It started as one post, but I found that there is just too much information to share in a single shot.  Consider this as the introduction.  Please share, and stay tuned! 

 

 

 

(not so) Super Hero

When you’re a teenager, you spend a lot of time figuring out exactly the path you want your life to take. You’re going to be married (or not), have kids (or not), have such and such career, live here, work there–on and on.

Life sure is funny sometimes, isn’t it?

I think one of the biggest rites of passage from the teen years into actual adulthood is when you start to realize that the things you wanted and the things you actually have really have nothing to do with each other.

Me? I wanted to be a marine biologist. I was going to work and live between Alaska and Hawaii, studying marine mammals. I would become a leading expert in the field, maybe appearing in National Geographic occasionally just for variety. I didn’t much care if I was married or not, and I certainly didn’t want any kids to slow me down.

I am not a marine biologist, incidentally. I am a caregiver.

What happened? Life, that’s all.

This isn’t a biography. I hold no delusions that the boring tale of my transformation into the ultimate soccer mom I am today is of any interest to anyone. It will suffice to say I am married with two children. Also, and the full time caregiver to my sister. Oh, and my 14 year old daughter is also permanently disabled, and I’m her caregiver, too.

My sister and my daughter’s disabilities are very different. My sister has CP, and my daughter has an undiagnosed neuromuscular disease. Sister is non ambulatory. Daughter ambulates a little, but poorly, and is a fall risk because of seizures.

So, you may be asking, what’s my point?

As with most of my writing, there is little point. (Sorry.) But I heard something the other day that seemed insignificant at first, then began to gnaw at my mind and churn around in there (along with the lyrics to hundreds of songs and a vast library of movie quotes) until I finally had to write about it.

Someone called me a superhero.

Let me start by saying I wouldn’t be caught dead in tights or a unitard or anything else that is the going fashion among the superhero community (you should be grateful–trust me.)

Mostly, though, the comment left me feeling a little disappointed in the way caregivers are viewed in our society.

As a full time, total care caregiver for two people with disabilities, I can assure you I am many, many things, some good and some (not so) good, but a superhero isn’t one of them. I’m not even side-kick material.

Superheroes don’t get tired. They are strong and fearless and they always save the day and solve the problem. They always beat the bad guy. Superheroes swoop in, set everything right, and fly away to do whatever it is superheroes do when they aren’t superhero-ing.

I am painfully non-super.

Tired doesn’t even begin to describe the level of physical and mental exhaustion I can experience. I’m physically strong (I like to think I have a dependable, pack-mule type build), and I act fearlessly when necessary, but I am afraid almost all of the time. Sometimes I feel like a total emotional weakling.

The biggest difference is that I can’t really set things right or beat the bad guy. Oh, I can manage day-to-day life pretty well. Everyone is clean and fed and warm and (hopefully) happy. I can change a diaper with one hand. I can administer meds in all sorts of fun ways, and I can load, strap, unstrap and unload a wheelchair in Olympic-gold-medal-worthy fashion.

What I can’t do, though, is beat the real bad guy.

I can’t make Sister or Daughter’s disabilities go away. We manage symptoms. We fight fires and try to prevent new ones, but I can’t make Sister walk, or Daughter talk, and I surely can’t make their lives “normal.” I can’t swoop in and destroy all the things that are basically just mean–things that take and tighten and weaken and hurt and sting and crush. Hell, I can’t swoop at all.

I would also be willing to bet that superheroes never have days when they are almost drowning in self-pity. They probably never sit morosely on the side of the bed and think, “why does everything have to be so hard?” They never have secret, hateful moments when they wonder what happened to those dreams and plans they had when they were teenagers. They certainly never have weak moments when they wonder if their lives will ever be anything more than an endless cycle of cleaning and feeding and medicating and entertaining. Obviously, I don’t have super powers.

I’ll tell you what I do have, though: a very important job.

My job is far more important than any role I could have ever played in the marine mammal world. I don’t think I’ll every make it into National Geographic, but I’m okay with that. Sister and Daughter rely on me to take care of their physical needs–that’s obvious. That’s what caregivers do, right? Provide physical care? Yes, but we do so much more.

I am the link between my people and the rest of the world. I make them aware of the world, and, more importantly, I make the world aware of them. I advocate for them, and I make sure others treat them fairly. I work very hard to make others see Sister and Daughter for what they are–a 36 year old woman and 14 year old girl. Each unique. Each wonderful in their own way, just as we all are.

In short, I am their voice.

Somehow, this seems infinitely more important than wiping a bottom or administering a pill. It is the heart of what we do, the very essence of caregiving, and we are doing it with plain, boring, every day skills. We aren’t superheroes. We are sisters, and brothers, and mothers, and fathers, and wives, and husbands, and children, and so many more. We are caregivers.

And, if you ask me, that’s pretty super.

anxietygirl

(not so) High Times

Below is the body of a recent letter I wrote to our Senator.  I wanted to post it so everyone could be aware of what is available out there for those who think they are running out of options.  I’d love to hear your thoughts on this!

 

I am writing to you from Fayette County. I write concerning my daughter, a fourteen-year-old with profound special needs.

This letter is not meant to be a medical documentation, so I will spare you the details of her lifelong struggles. For the purpose of this letter, suffice it to say that she has severe epilepsy. Further, she has drug resistant epilepsy. She has anywhere from one to ten or more seizure per day. If she is standing when they strike, she falls, the result being that she is frequently bruised and bumped. The situation has degenerated over the past year to the point where she is required to wear a helmet and a gait belt while at school. She also has to be in her stroller or an adaptive chair for a large part of her day. Although this is for her safety, it is discouraging, because she has limited mobility as it is, and she needs to be walking as much as possible.

There is, however, hope. In the past months, I have studied the benefits of medical marijuana to individuals with various forms of drug resistant epilepsy (also called intractable, or refractory epilepsy.) I have also learned, with some disappointment, that West Virginia has not yet joined the more than twenty states who have put some sort of medical marijuana bill into place.

Must West Virginia always be at the back of the class? With the current administration’s insistence that healthcare for all is of the utmost importance, how can such an opportunity be overlooked? I have to sit here and watch as states all around us, even the Commonwealth of Virginia, put even the most basic laws into effect regarding medical marijuana use. Meanwhile, my daughter’s quality of life continues to diminish while I wait for everyone to get over the archaic notion that using marijuana medically, even in alternative forms such as oil and under the supervision of a physician, is “using drugs.”

I can tell you all about “using drugs.” My daughter, though just fourteen, uses more drugs than the Whites of Boone County. She has to have routine blood work to make sure the drugs aren’t reaching toxic levels in her body. What differentiates her, of course, is that her drugs are “legal.” Or, to put it another way, her drugs have gone through all the appropriate channels to line all of the appropriate pockets. What’s worse, even with all the drugs, she still has daily seizures.

Senator, what can we do about this? I don’t know your position yet on this issue. From what I can tell, it is just now coming to the forefront of our thinking in West Virginia, as I myself have only come by this knowledge over the past few months. Still, I say it’s well past time that we start looking into the future of caring for our most vulnerable citizens. My daughter, though limited, is as entitled to her dignity and quality of life as everyone. Our beautiful state should work in partnership with other states, not to mention the federal government, to make these types of options available to people in need.

I know there are no guarantees. Perhaps CBD oil (a form of medical marijuana) will not help my daughter’s seizures. Perhaps it will be like so many of the drugs that she has tried over the years, and will work for only a short while. However, I would like to be given the opportunity to find out, without having to break the law to do so.

I know you are but one man, but every forward movement requires that first push. Please, Senator Laird, consider helping make that first push. I am willing and able to help in any way possible. I hope to hear from you soon.

 

Sincerely,

Janice F. Bostic


 

 

Into the Pit

In the short story “The Pit and the Pendulum,” horror master Edgar Allen Poe spins a yarn about a man imprisoned during the Spanish Inquisition.  I won’t re-write the whole story here.  The part that serves my purpose is when the unlucky fellow finds himself strapped to a board in the middle of his cell.  Suspended above him, hanging from a picture of Father Time, is a giant pendulum that has been sharpened into a deadly scythe.  With each pass, it drops closer and closer to our helpless victim, its goal to cause him to spill his guts, in a very literal sense.  The sound of it torments him with each dreaded pass–will this be the one?

SSSSWOOOOOSH

It may not be the best story every written, even by Poe, but it is stark and thrilling.  The senses are aroused.  When he first goes into his cell, he is in total blackness, and long story short, there is ALSO a big pit right in the middle of unknown depth and, as it turns out, unknown contents.  Here’s a spoiler–the guy does not want to fall into the pit.

But back to that pendulum thing.

SSSSWOOOOOSH

Imagine being strapped there, helpless to move, knowing that with each passing moment, disaster is coming closer to cut you in half.  You are trapped–lost.

My little girl is having surgery tomorrow.  Not a heart transplant or anything like that, but major surgery just the same.

SSSSWOOOOOSH

What I’m learning from this experience is that fear really has no  basis in reality.  Oh, don’t get me wrong–the feelings that come from being afraid of something are as real as it gets.  But the fear itself is a phantom, a black ghost that whispers through the recesses of your mind and imagination at odd times, like when you are laying quietly in the dark, hoping for sleep.  It murmurs unbearable thoughts into your ear when you aren’t expecting it, planting a seed which will, with the right care and tending, grow into a poisonous vine that twists around every thought.  It’s the fear of what if, the unknowable maybe, the surrender of our already delusional control.  Here’s the worst part: these fears aren’t for myself.  That, at least, would be tolerable.  But this isn’t.

SSSSWOOOOOSH

When your personality tends to the extreme side, it’s no big deal.  A little too fearful, maybe.  A little too anxious.  A tiny bit obsessive and compulsive.  Nothing therapy-worthy, just material for a blog and a good laugh from time to time.  But when the gears are already slipping a little, real fear shows up, and all hell breaks loose.

SSSSWOOOOOSH

I am terrified.  The surgery is tomorrow.  The pendulum is almost here, but here’s the crux–it isn’t swinging over me, but my sweet little girl.  And I’m stuck in one of those dreams where I can see the action happening, but am powerless to do anything to stop it.

SSSSWOOOOOSH

 

This fear has pushed me to the limits of my sanity.  Yesterday, I was driving, and  I had to pull over on the side of the road.  There was an intersection ahead, both in reality and metaphorically speaking.  The fear was there with me, as it always is, a black, pulsating thing that doesn’t kill but only squeezes, tighter and tighter around my heart and my lungs and even my throat.  It squeezes so hard that tears sometimes leak down my face from eyes that look starey and strange to their owner.  I had a wonderful vision.  I took the other road, the road away from home.  My daughter was with me.  My van was full of gas.  We just had a payday.  I stopped and bought the few things we would need to get past the surgery date.  Then, we just drove. We drove southeast, headed for the sea.  My sweet little girl saw all of that water and jumped in her seat because she was so excited.  She loves the beach so much.  We held hands as we drew closer, and when we parked, I got her out and just squeezed and squeezed and squeezed her, and the fear was gone, because I had left it back in the mountains.  There was no pendulum down there, no pit, no darkness.  Just us.  Just me and my little girl, safe and sound.  My little girl whose hair always smells so nice, who puts her hand so trustingly in mine and just knows that I am never going to let anything bad happen to her.

My little girl.

Of course, what I really did was take the road that went home, just as I always do.  Because responsibility comes with a price, a high one.  Pray for us.  Pray for my little girl.

SSSSWOOOOOSH


 

There May Be Hope

This may be the shortest post I’ve ever written.  I just want all of you, my good and faithful readers, to watch this video.

There may be hope for the human race after all.

The Other Brother

There are volumes written about special needs kids.  We talk about them on the news, on television shows, and on blogs.  There are speculations about what causes Autism, and stories about the lives of families who live with various challenges.

There is another population, though, that we don’t hear much about.  In my mind, I’ve always thought of them (us) as “the others.”

These are the kids who don’t have special needs.  They are “typical,” or “normal,” or whatever word is the PC norm these days.  They are the brothers and sisters of the special needs kids that we hear about on the news.

They are part of the background.

I think I have an unusual perspective.  I am both a sibling and a parent of a special needs individual.  I know the demands–emotionally, physically, and time-wise–of parenting a special needs child.  I also know what it’s like to be the “normal” part of the special needs equation.

It’s tough.

Now I have a son who is in the same position I was as a child, so I know.  I know a lot of how he feels, and how hard it can be.

Even though you know your parents love you, and you know they provide for all of your needs, it is hard sometimes to deal with the fact that your sister needs so much more.  It isn’t anyone’s fault, or choice, but the situation remains the same.  Looking back as an adult, especially since I have a special needs daughter now, it is very clear.  But I remember what it was like as a kid.  I remember how it seemed like I wasn’t as important as my sister, how everyone was fighting for her educational needs, and how I felt like everyone just assumed I was okay.

Here’s the kicker: I was okay.  I just didn’t think so at the time.

Like I said, now I can see that I was wrong to feel that way.  The simple fact is, my sister’s needs were greater.  She couldn’t fight for herself, so someone else had to.  If I hadn’t been such a selfish shit, I could have fought for her, too.

My son is so much better than me.  Already he is very defensive of his sister.  Don’t get me wrong–they have their moments, just like my sister and I still have our moments.  I’ve written before about how our relationship was a very typical sister relationship.  My kids are the same–she’s in his room, he changes her TV channel, she’s touching his stuff, she hits him on the head with a spoon–you get it.  But I digress.  My point was that he is very understanding of his sister, and he watches out for her.  He told me a while back that she was going to live with him when he got older, so I could have a break.

Yeah, I know.

I have tried very, VERY hard over the years to make sure my son always knew that he was just as important as his sister.  I have fought tooth and nail for his education.  We load up just like the Beverly Hillbillies and head off to soccer games.  We camp, and go to the beach, and the zoo, and anywhere else we want to go.  Sure, it would be easier to stay home.  It’s very tempting, especially as the years go by and I’m getting a little older and a little slower.  But it isn’t just my son who gets to experience all of these wonderful things–it’s all of us.  And so it’s worth it.  It’s important for ALL of us to do things besides run to the doctor or the therapist.

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This is all of us, with the exception of my husband taking the picture, walking back from a sort-of local nature center.  That’s my daughter riding on my sister’s lap, and my son riding on the back of her wheelchair.  I’m driving.  My sister’s sight line was impaired by the large child in her face.

Even though it can be challenging to be one of these “other” siblings, there are benefits, too.

We others have little or no difficulty accepting people with various levels of challenges.  It’s no big deal to us.  We can talk to people with special needs without discomfort or doubt.  We like to look at various wheelchairs people are riding and chat with them about speed and handling.  We can see beyond what is on the surface, and realize the beautiful people who lie within.  These other, (not so) normal siblings are more kind-hearted, and courageous, and understanding.  They despise bullies, and most aren’t afraid to stand up to them.

My son is all of these things and more.  He has the capacity for amazing kindness, and a tolerance that outshines most adults I now.  He has cornered the market on compassion.  I would have a much more difficult time making it through my day if it wasn’t for my son.  We would all do well to learn from these other siblings, the ones who stand in the background.

Do these others have special needs?  No.  But can we call them normal? Ordinary?

No way.

 


 

Welcome to the Short Bus: No Jerks Allowed

I’ve been thinking a lot lately about people, and how they think, and what they think about others.

I’ve also been thinking about the short bus.

Over the past couple of weeks, I’ve been reminded that being told you “ride the short bus” is an insult.  It means you are stupid or crazy.  But my daughter rides the short bus, and my sister always rode the short bus, and neither one of them is stupid or crazy.

So I started thinking, as I was standing outside and waiting on the aforementioned short bus with my daughter, that riding that diminutive mode of transportation is awesome.  Way more awesome than, say, riding a regular bus.  As proof, I have compiled a highly scientific and accurate list of reasons why the short bus is the coolest bus in the fleet.

  • The short bus has adult supervision.  My elementary age daughter is being watched over by qualified adults, not high school kids with piercings and dirty mouths.
  • My daughter wears an actual seat belt.  If the regular bus has an accident, your kid is going to be bouncing around like a pea in a can.  Sorry!
  • In general, the short bus drivers are kinder, more patient, and far more accommodating than regular bus drivers.  Sorry again!
  • Sure, the kids on the short bus have problems, but I’ve met the regular ed kids on the regular bus.  I think you’d better be more worried than me!
  • Yeah, some of them might lick the windows.  At least they aren’t making out with each other and “experimenting!”
  • Lots of them still color with crayons.  But they aren’t smoking cigarettes. Or drinking.  Good luck!
  • Most of the kids are dressed pretty conservatively, but I’d take that over the “gangsta” look, male skinny jeans, or the little girls who look like they got their clothing out of the discount bin at Hal’s House of Hookers.
  • The kids on the short bus have lots of issues, but my daughter will never tell me she hates me, hit me, roll her eyes at me, or call me a bitch.
  • Also, I don’t ever have to worry about my daughter coming home with a guy who looks like he just escaped from work release, telling me they are in LOVE and they are going to have a BABY!
  • Likewise, I don’t have to worry about her becoming the most “popular” girl in school, if you get my meaning.
  • I ALSO don’t have to worry about naked pictures of my daughter popping up on the Internet because of “sexting.”
  • My daughter and her peers on the short bus don’t judge people.  They don’t make fun of others because they are different, or use them as the butt of a joke.  They aren’t racists, bigots, or just general assholes.  They aren’t bullies.  In short (get it?), they aren’t jerks.

See, riding the short bus isn’t so bad.  It doesn’t make you stupid, or crazy.  You won’t catch a disease from riding it.  In fact, I’d take the short bus any day.  I’d climb on, and sit in the back, and as we passed the regular bus, I’d hold up a sign:

 

SEE YOU LATER, LOSERS!

middle-finger-retro

 

 

 

 


 

Mainstream Consequences

Have a look at this recent story on Nightline.  Even if you’ve already seen it, watch it again.  Please.

Since you hopefully just watched that, I won’t waste our time by going over all of it.  But I will recap.  Concerns are arising over some of the disciplinary measures being taken in public schools when dealing with kids who have various behavioral problems, usually kids on the Autism Spectrum.  The word “barbaric” gets used a few times, as you might have noticed.

As I was watching this, I was shocked.  And since I try to always be as honest with you as possible, I’ll tell you something else: nothing good could come from a teacher, or anyone else, using those methods on my daughter.  If someone shocked her as a punishment, I would have no choice but to do the whole Terminator thing and drive my f****** van right through the front of the school.  That’s all. Ditto on tying her to a table.

I try very, very hard to be an open minded person.  I know how difficult it can be to deal with behavior problems.  I know how impossible it can be to control these kids.  Some of them are big kids.  They try to hurt others, and they try to hurt themselves.  Even Evelyn, limited though she is, can really kick up hell when she wants to.  I know sometimes the only way to deal with her is just to not deal with her, if you follow.  She has to just sort of let it out, and I know the more I try to intervene, the worse it makes her.  You know how, when you are trying not to cry, and someone pats you or talks to you in a soothing voice, it makes you cry even more?  Same thing.

Anyway, as I said, I am trying to understand the thinking behind these extreme measures, and I always treat everything reported by the media with great suspicion.  I know a story can be twisted in many ways, and I know that we don’t know the back stories to these situations.

But they shocked that kid.  They shocked him.

I’ll tell you another one that got me: when the man was holding the little boy, and the boy’s mother was trying to get the man to let the boy go.  Ha, ha.  The man would have let my child go.  Oh yes.  Don’t get me wrong–I’m not one of those people who think I can whip everyone’s ass.  Far from it.  I’m getting older and squishy and I’m getting arthritis in my fingers.  If I punched someone it would probably hurt me more than them.  But make no mistake–I’m not pushover, either.  I would get my child out of the arms of anyone restraining her against our will, or die in the attempt.

So, what is my point?  Good question.  After my initial emotional response passes, I don’t think those people using those methods are intending to be barbarians.  It seems to me like they are uneducated and inexperienced. They lack the knowledge, patience, and understanding required to deal with these kids.  Did you see the other school?  The Centennial School?  The one with all the kids with behavior problems?  Did you see how good the teachers were at dealing with the kids, and how caring and informed the administrator was?  If you missed it, watch the video again.  Pay attention.

Has anyone caught up with me yet?

Want to know how we go to this situation?  Want to know how things got this far out of control?

Mainstreaming.

They even mentioned it in the video, though they never addressed it directly.  But it’s there.  I’ve talked about this before, but I think it bears repeating.  Let me make it as clear as I can: this is the kind of shit that happens when you put special needs kids in a “regular” education environment! Regular ed teachers cannot provide the attention needed for a special ed kid and the other fifty kids they have to teach to take tests.  It’s not possible, and I don’t care how fabulous the teacher is.

You know what it is?  It’s babysitting.  That’s all it is.  Glorified, really expensive baby sitting.  A bunch of politically correct bullshit that makes everyone feel “good” that these kids aren’t being segregated or made to feel different.

Here’s a frickin’ news flash, which I have flashed previously: they ARE different! All of the wishing in the world won’t change it.  I can put Evelyn in the regular ed classroom until the end of time, and she still won’t be a regular ed student.  What could she possibly get out of a regular ed classroom?

From what I can tell, about 60 volts.  Or maybe tied to a table.

I find it amazing that my own state of West Virginia is among the seventeen that have laws in place to protect children from this type of extreme discipline.  Maybe there is hope for us after all.  Otherwise, there are no federal guidelines.  I guess it’s a sort of “anything goes” type situation.

But the bottom line is this:  it will only get worse.  The increase in behavioral disorders is astronomical.  Where do we go?  What do we do?  I don’t know the answers to those questions, and I don’t pretend to, but I do know one thing.  The answers will not be found inside a mainstream classroom.

And remember, if you hear a news story about some parent parking her van in the principle’s office, send me a prayer.


 

(not so) Sorry

Apologies are funny things.

 

 

 

 

 

Remember this guy? This was Jimmy Swaggart’s tearful apology for his prostitute habit.  He was so sad.  He was so sorry.

Right.

As a result of the mild backlash from her insensitive remarks, Margaret Cho has written a heart-felt apology on her blog.  I encourage you to hop on over there and read it, and be sure to read the comments.  They make excellent food for thought.

I don’t really care all that much about the apology itself.  I mean, I don’t know Cho, she doesn’t know me, and she doesn’t owe me any apology.  She can be a jerk if she wants, and I can slam her for it if I want. (Freedom of speech, baby!)  The thing that rubs me wrong is how typical this “heart-felt” apology is.  Some celebrity is guilty of a fantastic boob, then they issue a sappy, crappy, “oh-I-didn’t-mean-to-hurt-anyone” apology.

Whatever.

I always wonder about apologies.  I sometimes ask my son, when he gets in trouble, if he is really sorry for what he did, or if he’s just sorry he got caught.  The phrase that comes to mind is “damage control.”

A lot of the comments on Cho’s blog suggest that people are just looking to be offended, and that it isn’t that big of a deal.  I guess, from a certain perspective, that right.  Ultimately, what a minor celebrity says during a cable television interview isn’t all that important, compared to, say, the President, the Pope, or Stephen King.  People say jerky things all the time.  The world is consumed by jerkiness.  Bygones.

But here’s the thing–Cho promotes herself as a great human rights activist, standing up for minorities of all kinds.  More than that, while it may not make any difference about what a person says, it certainly reveals their character, doesn’t it?

Take those comments–a lot of the commentators remarked that it was an “accident,” or that Cho “slipped up.”  “Humans make errors.”  Hey, you don’t have to tell me that.  I’ve made enough mistakes in my time to fill this blog and ten more.  You know what though?  I have never called anyone a retard.  Ever.  I’m sure I’ve hurt people along the way, but there are no excuses, and no apologies.  Those people can hate me, and rightly so.

And while I’m at it, that whole “accident” and “slip-up” thing really got me thinking.  An accident is when you step on someone’s toe, then say, “Oh, I’m sorry!”  Or maybe when you back your car into a parking meter. (Just an example.)  Those are accidents.  You might even “accidentally” hurt someone’s feelings by something you say.  I personally am very familiar with the taste of my foot.

However, when you set out to do or say something that you know is going to be hurtful and hateful, well, that’s not an accident.  That’s not a slip-up.  Cho was giving a little comedy routine right there on live television.  She’s promoting her new comedy tour, and she was giving everyone a preview.  Part of her repertoire is being crude and pushing the envelope.   That’s who she is.  No sense in apologizing for it now, I guess.

Don’t get me wrong–I do believe in apologizing when you hurt someone. Here’s the catch–being sorry for something doesn’t fix it.  Apologies aren’t a license to do or say anything you want.  Everyone would do well to remember that they while they absolutely do have the freedom to say what they want, others also have the freedom to react.  People who were Margaret Cho fans before probably still are.  I would go so far as to say that a lot of people she offended had never even heard of her until now.

(Can you say, “publicity?”)

One last thing–it is possible to be funny and racy and edgy without tearing others down.  You can even poke fun at others without hurting them.  There is a line there, and when you cross it, don’t be surprised by the consequences, and screw your apologies.

Oh, and make sure you have a good publicist.

read to be read at yeahwrite.me

 

 

Proud Parent of a “Retard”

Usually, I’m one of those people who are sitting at home, shaking their heads ruefully, when I hear about how everyone is mad because some pea-brained celebrity made some inappropriate comment during an interview.

You know what I’m talking about–someone uses a racial slur, or slams homosexuality, and the media feeding frenzy begins.  It’s played over and over and over and over and over on every network in the universe.  Aliens on the planet Zoobork hear about it.  Sometimes, it blows over, and sometimes a career can be shaken. (Remember Imus?)

I always sit around and say how the media makes it worse, let it drop, etc, etc.

Well, I’m a hypocrite, in case any of my regular readers haven’t figured it out, and I’m about to prove it to the tenth degree.

Recently, Margaret Cho, a comedienne, did an interview in which she declared she didn’t “necessarily want to have a retard” baby.  She’s older, and I assume she’s talking about the increased risk for birth defects as a woman moves along in her childbearing years.

This comment is possibly one of the stupidest things I have ever heard anyone say, and that, my friends, is saying a lot.  I refuse to believe anyone could be this ignorant.  She said it with intent–period.  Was it for the publicity, or is this really the depth of her mind?  Obviously, having a retarded baby is the least of her problems.

I hate that word–retard.  I hate it.  Hate, hate, hate.  Is has a real definition, and until very recently was commonly used in medical circles.  But that doesn’t matter–I hate it.  People use it, and they sure as hell aren’t using it medically.  They use it to imply someone is stupid or ridiculous.

In other words, they think my daughter is stupid and ridiculous.

In other words, Margaret Cho thinks my daughter is stupid and ridiculous.

I wonder if this little slur from this big idiot will get as much negative attention as, say, Imus’ referring to some black women’s basketball players as “nappy-headed ho’s?”  I sort of doubt it.  I guess the only ripples will be from people like me who have very personal feelings about these retarded babies, kids and adults.

I mean, purely hypothetically, if someone were to write something about Margaret Cho, and they were to use a racial slur, like Slant-eye or Buckethead, why, that would be very offensive, wouldn’t it?  Lot’s of people would be offended, and maybe whoever said those things would be dragged over the coals.  So of course, you would never want to use those types of racial slurs.  If you did, it would all just be in good fun, just a little joke, just pushing the boundaries to prove your edginess, right?  No harm done–no need to get upset, right?

In reality, I know I’m supposed to take the high road here, and that comments from such a small mind should just roll right off my back.  Oh, but it’s hard.  When I sit here and look at my daughter, and I think of how much I love her and how beautiful she is, I just want to snatch that bitch Margaret Cho bald.

Maybe there are lots of people who feel like her.  I understand that everyone wants to have a healthy baby, and no one would wish to have a child with any type of problem.  But if there’s one thing I’ve learned in this life, it’s that there are no guarantees, and let me go one step more–I would not trade my retarded daughter for ten “normal” kids. Here’s why:

  • She lives every day in the moment–no worries about yesterday or tomorrow.
  • She gets mad, but she gets over it.  No grudge holding for her.
  • She loves who she loves, unconditionally.  She has no prejudice, no bias, no preconceived notions about anyone.  (If only Margaret Cho could be so fortunate.)
  • She gives affection freely.
  • She has taught me what a gift life is, how important it is to be thankful for each thing we are given, no matter how small.
  • When she’s excited, she jumps and laughs and squeals.  She lives her joy with childlike abandon.  We’re all too hung-up with ourselves to ever really give ourselves over to happiness and joy.  We’re the ones missing out.
  • It’s hard sometimes, but it’s my privilege to take care of her.  She depends totally on me–what an awesome responsibility!
  • She is satisfied with so little.  It takes almost nothing to make her happy, where as all of us are never satisfied.

If all of these things come with being retarded, maybe we should all be so fortunate as to be counted among that number.  There are obviously worse things to be.

A narrow-minded idiot, for example.

 

P.S. In case you missed the message: Suck it, Margaret Cho.  You don’t deserve a “retarded” child. 

 

This is Evelyn when she was three.  Who knew being retarded was so frickin’ cute?

r-word.org

 

 

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