Light It Up Blue

April is Autism Awareness Month.  Many countries around the world are trying to bring awareness to this developmental disorder by "celebrating" this cause during April.  Kindof an odd way to put it I suppose, but at least it shows that humankind is making the effort to recognize that autism affects so many, and a greater understanding is needed all around.  Doesn't matter to me what word is used, as long as people become more aware.

Autism is a very complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing by 10-17 percent annually. There is not an established explanation for this increase, although improved early diagnosis and environmental influences are two reasons that often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.   (Check out Autism Speaks for more information.  There is no known single cause for autism, but increased awareness and funding can help families today.)

A couple of years ago I had the privilege of spending a lot of time with an awesome little guy.  He was diagnosed as being on the "spectrum", a term often used to describe those who have some sort of Pervasive Developmental Disorder, or Autism Spectrum Disorder.  It is called a "spectrum disorder" because it affects individuals differently and to varying degrees. There are such a wide range of issues, that it is extremely difficult to categorize and pigeon-hole each person, so sometimes the label "autistic" is used as the more generic term.  Not my decision, just seems to be the way it goes.  His issues were more severe than many, but less severe than others.  The "spectrum" ranges from kids with mild language delays and social difficulties, to kids who have no language capability whatsoever and spend their days locked in their own little world.  SUCH a wide array of symptoms that vary between each and every individual, which really makes this such a tricky disorder to diagnose, treat and manage.

Anyway, his mom and dad needed someone with educational experience to hang out with him, tutor him, and just basically converse and socialize with him.  I spent almost a year, 3-4 afternoons a week, working and playing with him.  What a challenge.  This was a kid who could count to 100 in English, German AND Japanese, but would literally poop on the floor of the bathroom if he didn't feel like getting up on the toilet.  He could kick my butt in I Spy, but rarely met my own eyes.  He could read about 500 words (he was 4 at the time), but wouldn't use a fork/spoon to eat.  Sometimes he would laugh and giggle, but rarely at appropriate times, and on the rare occasion when he would meet my eye, or laugh WITH me, it was like the world would stand still it was so amazing.  It was like a little gift each time it happened, and it just made me more determined to see that gorgeous set of blue eyes looking AT me, not through me.  We had a great time most days, and I always had a real feeling of satisfaction when we'd do something different and he'd respond positively. 

I probably learned more from him than he learned from me.  For example, I learned that my bruised feelings, when the "talking" Thomas book I bought irritated him more than pleased him, were incidental and insignificant.  I never realized how grating and loud the book was until he clapped his hands over his ears and started to wail.  My own kids had liked it, or at least tolerated it, but he quickly showed me that everyone has their own threshold and it was up to me to work within HIS parameters.  I think most parents learn to be unselfish, and put the needs of their kids first, but parents of kids who have any type of issue learn this lesson all the more quickly. 

The most important thing that he taught me was to celebrate his passions, large and small.  He had SUCH an intense passion for everything he loved.  Right before I stopped going over there regularly, because he was getting ready to be in full-day kindergarten, his most favorite thing was a book of flags from countries around the world.  He could name EVERY SINGLE FLAG AND COUNTRY, and we'd spend hours examining each one.  There were hundreds of different flags, and I swear, some of them were nearly identical to those from other countries.  Didn't phase him, though.  His singleminded focus was a powerful thing to behold and his parents and I tried to channel that toward other more mundane tasks.  I'd like to think it was working, and I am sure he's continuing to astonish his parents and teachers each day.

The admiration I have for his mom and dad knows no bounds.  Their advocacy for their son knows no limits.  Their extraordinary patience, gentleness of spirit AND steadfast demand that he do all of the things any other boy his age would do, is going to help him for the rest of his life.  He goes to school, church, plays soccer and takes music lessons.  Just like many other little guys his age.  He also has intense speech therapy, occupational and physical therapy, is in special classes, and needs alot of TLC, but all of these things wrapped up in one package are going to help him to be a part of our society at large, just like anyone else. SO many people around the world are affected by Autism.  Not just those who are diagnosed, but their parents, siblings, teachers, classmates.   It can take much patience and love sometimes, but don't we all need that?

Many children with Autism Spectrum Disorders need that special attention, and it is our job as a society to make sure that they, and the adults that they eventually become, get all of the help that they deserve.  Autism is treatable. Children do not necessarily "outgrow" autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes. Currently, the Autism Society estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, and that the United States is facing almost $90 billion annually in costs for autism (this figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, in addition to related therapeutic services and caregiver costs).

There are several important bills moving through Congress that will have important effects on the autism community – safer educational settings (Keeping All Students Safe Act), better autism services (Autism Treatment Acceleration Act), greater financial independence (Achieving a Better Life Experience Act), better protection against toxic chemicals (Toxic Substances Control Act Reform, introduction anticipated soon), and more. For more information about this legislation and to take action to support it, visit Vote 4 Autism.

Below is text from the United Nations Secretary-General Mr. Ban Ki-moon's Message for World Autism Awareness Day.  I think it SO perfectly states what we should all keep in our hearts and minds when thinking about those in our world with ANY disability. 

"Autism is a complex and inadequately understood disability with a wide range of manifestations. Children and adults with autism – and, indeed, those living with disabilities in general – have a double burden. In addition to the daily challenges of their disability, they must also cope with the negative attitudes of society, inadequate support for their needs and, in some cases, blatant discrimination.

The UN Convention on the Rights of Persons with Disabilities, which entered into force in May 2008, is a powerful tool to redress such situations. It aims to promote equal enjoyment of all human rights and fundamental freedoms by persons with disabilities. As of today, 144 countries have signed the Convention and 83 have ratified it.

World Autism Awareness Day is dedicated to creating greater understanding about autism and promoting universal adherence to the UN Convention. By combining research and awareness-raising efforts, we can provide adults and children with disabilities such as autism the protection, support and full membership of an inclusive society.

As we commemorate World Autism Awareness Day 2010, let us remember that each of us can take on that responsibility. Let us join persons with autism, their families and their advocates in a community of voices for greater awareness and understanding. Let us also look within, and re-evaluate our attitudes and those of our societies so we can remove the prejudices that discriminate against persons with disabilities. Let us dedicate ourselves to creating a fair and caring society that affords true dignity and rights for all."

I am moved each and every time I read that statement and I am proud and happy to be participating in the "Light it Up Blue" campaign being used to promote Autism Awareness Month. It is a unique global initiative designed to help raise recognition and to shine a bright light on autism as a growing public health issue. On April 1, the eve of World Autism Awareness Day, the Empire State Building joined in and blue lights lit up the evening sky! The launch of this inaugural "Light It Up Blue" campaign was a success. Iconic landmarks around the globe joined the Empire State Building in New York City. The Willis Tower in Chicago, the CN Tower in Toronto and Kingdom Tower in Saudi Arabia – as well as airports, bridges, museums, concert halls, restaurants, and retail stores - were among the more than 100 structures in over 16 U.S. cities and nine countries around the world that were lit up in bright blue on the evening of April 1 – the first night of Autism Awareness Month and the eve of World Autism Awareness Day (WAAD), April 2nd. 

To show your support you can wear a blue bracelet, purchase a rainbow Autism Awareness ribbon, wear lots of blue, change your Facebook profile pic, use a blue font, post about it on your blog or twitter.......But mostly, you can just become more AWARE.  That would be the biggest way to support those with autism.

Thanks for reading today and allowing me to use my blog as a forum to talk about a cause that I really believe in.   Some days plain ole silliness abounds, but some days it's awesome to have a blog where you can get on your soapbox, just for a brief moment, and "shine a light" on something truly worthwhile.

relief

sheesh, what a day.  pouring rain, car making a funny noise, AAAAANNNDDDD a trip to the vet for the Dog.

must be Monday.

The Dog, a 10 year old miniature dachshund, has been acting kindof funny for about the last 10 days.  lethargic, not playing with her toys, laying in her bed, and worst of all she's been having trouble getting up and down the steps when she needs to go out.

then, beginning on Friday night of course, because the vet is only open for a few hours on Saturday morning for appointments that cost a small fortune and really is Saturday that precious of a commodity, and if it is then why are you a doctor.  oh.....sorry....i digress.

anyway, on Friday night her symptoms got worse.  her little tiny back legs were buckling a bit and she started walking like a crab.  NOT good.  i can tell this, and i'm not even a vet.

called first thing this morning and got her an appointment.   wrapped her up in her bed, thus protecting myself from her gigantic and ominous teeth, so that i could walk through the monsoon to the car.  actually, her teeth aren't really all that gigantic.  but they still hurt when they pierce your skin, let me tell you.

she cried all the way to the vet, this being a dog who does not enjoy car rides in the slightest.  so, again trudging through the raging typhoon, i get her inside, where she proceeds to behave like she is a 2 year old puppy with nary a symptom to be seen.  those of you with children are very familiar with this phenomenon.  child is barfing, feverish, hallucinating, speaking in tongues, hacking up a lung UNTIL you get into the exam room at the pediatrician's office, where they make a miraculous recovery, exhibit no signs of illness whatsoever and proceed to make you look like a red-faced bumbling idiot.  this is the one time in your life when you actually WANT to hear the doctor say that your child has scarlet fever, hanta virus or ebola, just so that you are justified in being in their office.

actually, once the adrenaline wore off, The Dog did make an effort to ACT like she might be hurting or that something was wrong.  she did drag her back legs a bit, and it was obvious to the vet that she was suffering from a typical dachshund malady, problems with her spine - long and weiner-like that it is.

i left her there in the office, or as the vet calls it, *in-house hospitalization* (i think mostly so that she can charge me more for 5 hours in their back room than you'd pay at a 4-star hotel).  i authorized x-rays, blood work and a pain med injection (i considered asking for one myself at this point, believe me) so that we could rule out other issues.

got the call a few hours later that The Dog did have some inflammation in her back/spine and that she'd be coming home with some anti-inflammatory meds and a prescription for reduced activity.

big sigh of relief.

i have lost sleep over the past few nights as i contemplated telling my 12 year old daughter that her beloved Dog might be not long for this world.  i can't tell you how thankful i am that i can put that off for a while.

we've had the "The Dog is getting older, and we need to remember that pets don't live as long as people" talk a few times lately, but this ailment really popped up out of nowhere and i was feeling woefully unprepared to have this conversation FOR REAL.

so, $440 later, The Dog is sleeping in her bed, snoring loudly and peacefully, and my little girl is smiling and happy.

that makes it all worthwhile.

stymied

woe.

i've had a day where i said the wrong thing to Everyone, and Everyone said the wrong thing to me.

why is it that some days things roll right off, and other days things stick like burrs you can't get out of your hair? 

maybe because it's been a LONG week.  that's my story, anyway, and i'm sticking to it.  truthfully though, it has been stressful, busy, hectic, and packed full of the little moments that leave a mark.  and not in a good way.  i feel like i have welts all over from the little slights and snarks.

most of the time i'm pretty impervious to things like this and thick-skinned.  not today.  actually, not for the last few days.  feeling put-upon (taken for granted, taken advantage of.....the list goes on) has left me headed for martyrdom.  oh the drama.

and lo, venting is required in order for a modicum of maturity to be regained. 

let it begin.

i think the worst thing is when someone in a position of authority and responsibility continually falls down on the job, and isn't held accountable for it.  everyone else mops up the mess, picks up the pieces, and keeps things rolling.  but because they are adept at covering themselves, it doesn't come to light as quickly as it might otherwise.

i personally think it's time for the buck to stop.  while it is not particularly my job to point out these egregious grievous awful embarrassing constant stupid unacceptable errors, we are well into double digits (!) over the last two weeks.   big things too, not little things.  big things that really affect others.......this someone is in a position senior to me, but when the work/product overall is suffering and morale is sinking, what is the solution.

these little fissures of resentment breed bitterness...............then respect starts to erode and your whole perspective begins to change.  i think you're more likely to distrust an opinion when your internal radar is pinging, don't you?  when you are thinking to yourself, "this person is continually dropping the ball, how can i support them and their decisions, as fully and totally as before".

we all make mistakes, get distracted, lose focus every now and then.  but when it becomes habitual and almost EXPECTED for this person to make these types of blunders, i think action is required.

so, Heads Will Roll.  let the Face Punching commence!

nah, i just said that to get it out of my system.  after verbalizing my frustrations, i feel a bit better already!

now if i can just stop letting these frustrations get the best of me........

maybe i'll be less like Cruella deVille tomorrow and nobody will want to throw me out a window.

while i might lose her personality, the white streak stays.

sister

friend supporter champion gift true confidante familiar collaborator treasure inspiration motivator idol forever believer ally advisor bond giver comrade advocate distinctive solace challenger savior extraordinary teacher

heroine

i have sisters.  each unique and matchless in their charm and in what they bring to the world at large.  witty, smart, generous, elegant, kind, thoughtful, classy, selfless, funny, beautiful.  they are so exceptional and i admire them all more than i can really articulate.  that they are so fabulous shouldn't be surprising, as they have Our Mom as an example.  it's certainly no secret that we worship the water she walks on.

sisters are easily taken for granted as they are always THERE.  when you need them and when you don't, but mostly when you don't think you need them, but deep down inside, you really do.  that's actually when you need them most of all. 

the camaraderie, the solidarity, the unity.....can lift you when you are down, and hold you there until you can manage on your own. 

you are never alone as she is there in spirit, if not in flesh, and the connection that exists is the strongest, and sweetest, of all friendships.

sisters are there to revel in your success, to share in your joy and happiness.  to appreciate and empathize...............and mostly, to Understand.

how lucky am i to have that four times over.

these people say it better than i ever could....................

A sister can be seen as someone who is both ourselves and very much not ourselves - a special kind of double.

-- Toni Morrison
 
A ministering angel shall my sister be.

-- William Shakespeare
 
A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life.

-- Isadora James

Sweet is the voice of a sister in the season of sorrow.

-- Benjamin Disraeli

A sister is a little bit of childhood that can never be lost.

-- Marion C. Garretty
 
We know one another's faults, virtues, catastrophes, mortifications, triumphs, rivalries, desires, and how long we can each hang by our hands to a bar. We have been banded together under pack codes and tribal laws.

-- Rose Macaulay

Just Do It

i often dream that i am running.............weightlessly gliding across the terrain, heartbeat in my ears, effortless. i breathe easily, my stride is long and comfortable.  it feels better than i could ever imagine.

then i wake.

if only i could translate that feeling into my normal day, when i'm actually awake and could use some peace and serenity. i have never LOVED running, but used to do it regularly for exercise and for the quiet it brought to my mind. few things top the feeling when you have finished a long run. the endorphin high lasts forever............

sadly, that endorphin high is akin to the feeling gained after consumption of copious amounts of chocolate. or pizza. or BBQ potato chips. or genoa salami by the handful.......all of which completely counteract most of the benefits from the exercise to begin with.

at any rate, going to the gym and running were a part of my daily routine for years. then came knee surgeries, professional demands, children...........it seemed that the hours of the day became less plentiful as each year went by, and the excuses multiplied faster and faster.

what to do, what to do. how to re-motivate. how to make the time. how to grab that desire again.

honestly, Motivation is all around me. i have friends in abundance, and sisters, who work out regularly, run, go to the gym. they are all so fit and look amazing. if that isn't Motivation, nothing is..............

but there are always excuses. my latest one was The Snow. hard to run when it's freezing, snowy, windy, right? well, those excuses were pathetic this week as the weather actually improved, and much of the snow melted.  to make matters worse, i really can't even use the weather as an exuse.  i own a treadmill.  YES, i do.  it's in my office.  currently its being used as storage for some files boxes, and some clothes that needed to dry.  pathetic actually isn't even the word.  appalling might come closer?

i had to search elsewhere for some of that all-important Motivation.

as is often the case:  SHOPPING!!!!!!  it becomes the cure for all that ails. seriously. i figured that if i had a new pair of running shoes, and some other miscellaneous running THINGS, well certainly i'd feel it necessary to put all to good use. 

sadly, when i started going through all of my "workout gear", and i use those two words very loosely, i discovered these items.

yep.  brand new, tags still attached on all....................

then to make matters worse, much worse actually,  i TOTALLY forgot that i had gotten these when i was supposed to be Christmas shopping for others!

yay for me, i had actually taken them out of the box but, so far, they've only been used for walking into Starbucks and the grocery store (candy aisle of course), as i tried to maintain my strength to get gifts purchased and shipped over the holidays.  hardly the thing that Olympic dreams are made of.  

so, it's back to the drawing board. 

soon i won't have the winter layer of sweaters, vests, and long-sleeves to camouflage the parts that have become...........fleshy.  roundish.  jiggly.

and let's not even venture into swimsuit territory. 

oh.  wait.  I MAY HAVE JUST FOUND THE LAST SLIVER OF MOTIVATION. i really do not want to be mistaken for something mammalian that lives in the ocean.

so.  after i go out and buy some more cool, comfortable and fun things to wear, the workout regime begins in earnest.

really.

superlatives

well, SnoTorious B.I.G. is now past.  there almost aren't any words to describe the magnitude of snowfall, so i guess HUGE, GINORMOUS, RECORD-BREAKING will have to do.  we got just a hair under 29" here in alexandria, and it was pure hell trying to dig out.  while i tried to stay ahead of the snow by shoveling throughout the blizzard, it was still quite the task.  losing power after the snow had ended was just the icing on the cake, to be perfectly honest.  it got mighty chilly by morning with no electricity, that's for sure. and the loss of cable/internet/phone was absolute torture.  i was feeling like laura ingalls wilder with candles and huge down comforters everywhere...........(now all i need is some fresh maple syrup to make candy and the picture will be complete).  supposedly we're going to be hit with another significant "snow event" on Tuesday into Wednesday, but so far the newscasters are playing it down.  i think it's so they won't be tarred and feathered in the streets of public outrage.

i know that everyone can read all about The Historic Snowstorm on the internets, and newspapers, etc..........so i won't bore you with any more of that bunk.

here are a few shots, though, for all of you out-of-towners, to give you an idea of just how much Fun we have (not) been having.  i guess the fun starts after the shoveling ends?

notice that the tree in my front yard is again featured prominently (and probably annoyingly, to most of you), but it helps to give me perspective......

more photos can be found on my flickr photostream to the right, under "a day in the life" tab......

the snowstorm was scary, cold, windy, icy, loud, and absolutely stunning in its power.  Mother Nature sure does wash away the yuck, and leaves skies of cerulean blue that cannot be matched.............

the air has never been this crisp and clean.

la nieve

snow:  Snow is frozen water that falls from the sky. All snow flakes have six sides, but no two snow flakes are the same.  Snow is precipitation in the form of small white ice crystals. Snow is formed from the water vapor in the air at a temperature of less than 32 degrees Fahrenheit.

blizzard:  A blizzard is a severe storm condition characterized by low temperatures, strong winds, and heavy blowing snow. By definition, the difference between blizzard and a snowstorm is the strength of the wind. Ground blizzards are a variation on the traditional blizzard, in that ground blizzards require high winds to stir up snow that has already fallen, rather than fresh snowfall. Regardless of the variety of blizzard, they can bring near-whiteout conditions, which restrict visibility to near zero. Blizzards have a negative impact on local economies, and can paralyze regions where snowfall is unusual or rare for days at a time.  (duh.  see also: Northern Virginia and Washington, D.C.)

those are the Real and Official definitions. 

i prefer these, myself: 

blizzkrieg, blizzardpalooza, snowmageddon, snotorious B.I.G, snowpocalypse, feblizzard, snOMG, (or, in this case, snOMFG), the big snowbowski, snowtastrophe, shovelation, shoveltastic, snowgasm, snowzilla, snowbliteration, keyser snowze, snownami, oblizzarated,.............TAKE. YOUR. PICK.  all monikers for our latest venture into Winter Wonderland..........

and It Begins: 

not too bad yet, but we'll see how it goes overnight, as we are expected to get 3" per hour at the height of the storm, with 24" on the ground by 11 a.m. 

hot toddy anyone?