As Autism Awareness Month Comes to a Close

As Autism Awareness month comes to a close, I'm reminded that, for many, this past month will have just been a blip on their life's  radar screen: a 2-5 minute segment on the news; a check-out girl at the local store asking for donations to help autism awareness; a glance at a mother & child in a local Wal-Mart wondering if that child has autism because they see the child tantruming uncontrollably and mom looks frayed and frazzled; a stare at a little boy who's playing all  by himself without a care in the world, content, happy at the sandbox in the park, but when he skins his knee & tries to call out for his dad, no words come out of his mouth, only the sign language his father taught him because he is non-verbal. Yes, for many, Autism Awareness month comes and it goes. But, for 1 in 50 of us it stays every day, every month out of every year.

As many of you know, through my facebook page, I took a little break from Autism Awareness month. It was, how should I put this, rather stressful to say the least. I was desperately planning for a quiet month, focusing on having fun with our boy, raising a little money for a great Autism organization, reconnecting with my husband, and reading. . . a lot of mindless, go-away trashy novels. What I was dealt, was far from quiet & stress-free! But, I guess I shouldn't be surprised. Any one, who lives the lives we do knows that things typically don't go as planned. Here's a few "autism every day antics" that made me feel. . well. . in good company at least:

ON THE LIGHTER SIDE . . . 

From Bacon & Juice Boxes, April 20th:
 "I just fished a bicycle out of the pool with a skimmer. How's your freakin' day going?" (https://www.facebook.com/BaconandJuiceBoxes?hc_location=stream)

From MicahBoyGenius, April 26th:
"It's all fun and games and Autism acceptance, until your whole house smells like poop. GF pizza turned Poop pizza. True story.". . . "Just when I think I've been through everything with Micah and Autism I get a bucket of cold water to the face, so to speak. Jessica bought Micah a delicious glutton fee pizza and he was eating it up so good (yay!). Jessica said she thought he had pooped so I went to get him down. I noticed he only had half a piece left so I decided to go ahead and try some. It wasn't until I had chewed a good bit of it that I knew something had gone horribly wrong! (I mean I chewed for a while and realized something was really wrong!) I looked in disbelief as I could see Micah's fingers and face were brown and that yes in fact this nightmare was indeed happening! This pizza had a surprise ingredient and even after spitting it out it was still stuck in my mouth! So Jessica came to my rescue and cleaned him up while I took the baby and let him scream in his crib while I used toothpaste, floss and peroxide to sanitize my mouth and do my best not to vomit everywhere. The ONE time I don't put a onesie on him! I told my wife, "If anyone tries to one up me about being a parent I'll just ask, 'Have you ever eaten your kids poop? No? Then shut the #3!! up!'" JK! Anyone have any suggestions as to how to reset my pallet? Pop? Ice Cream? Something good to get my mind off it? Just thinking about it makes me queasy!  ~Daddy Genius"
(https://www.facebook.com/MicahBoyGenius?fref=pb&hc_location=profile_browser)

From All I Can Handle I'm No Mother Theresa, April 22nd:
"Ugh! It's a PUFF POOF! Mia sometimes likes two Hello Kitty shower puffs. Tonight she was carrying them around. And she has lost one. Somewhere in this house, that is NOT the Taj Mahal in size. She is weeping, "Where's the cat?" And I have looked everywhere for for the last 45 minutes - which means it is someplace completely obscure. Here Kitty Kitty Kitty PLEASE!!!!! This autism moment brought to you by - Kim".. . .April 24th. . "Really? Welcome to autism. Here is Hello Kitty. Lost the other night. Now jammed behind Bella's bureau. I happened to look there for the VCR cleaning cassette (yes, VCR) that is also lost. And the unit won't play tapes. So one problem solved and 9,567 to go and miles to go before I sleep."
(https://www.facebook.com/pages/All-I-Can-Handle-Im-No-Mother-Teresa/103886066340794?fref=pb&hc_location=profile_browser)

. . . AND ON THE NOT-SO LIGHT SIDE

From Through Zach's Eyes.Autism Awareness, April 24th:
"Everyday I wish I could type something is all "Butterflies and daisies" tonight is NOT that night. Zach is fully affected by the moon phases ( I believe he is....ask any other "autism mom" their child is too) tonight Zach has been totally uncontrollable. Very high energy, screaming, jumping, swearing (yes, this sweet little boy has a mouth of a sailor!) I am very thankful to daddy for playing a video game with him. I am utterly exhausted! Full moons are something we do mot look forward too! Full moon=Full Throttle!"
(https://www.facebook.com/pages/Through-Zachs-EyesAutism-Awareness/116307578558685?group_id=0)

From Stop Romanticizing Autism, April 6th:
"My brother has just broken the glass window of my room with his head for no apparent reason. Miraculously/fortunately his eyes are unharmed (as always) but has injured both his eyebrows and forehead. He was watching the TV, went outside, broke the window and came back ... relaxed ... smiling ... laughing ... and started watching TV again."
(https://www.facebook.com/pages/Stop-Romanticizing-Autism/373243612771420?fref=pb&hc_location=profile_browser)

From Autism Whispers After Twilight, April 23rd: (not published on FB status)
" I think all would agree that sooner or later this autism life we live will catch up with us one day. Maybe not the day your child receives his/her diagnosis and maybe not even through the horrendous years of fighting doctors who tell you institutionalization is your only hope, speech therapists who inform you that your son will not be reading above a 2nd or 3rd grade level, and neurologists and psychologist who insist upon you taking a course of action that has nothing to do with healing your child. No, IT will sneak up on you when all's relatively quiet and progressing nicely for your autistic child. IT will set you back like the day you found out your kid had autism. All the years, while you were dodging bullets, scraping together the funds for therapies & treatments, lying awake at night wondering, worrying, and researching your child's autism, your health was deteriorating to the point of hyper-critical. So you see my fellow autism warrior families, if I can pass along one piece of advice to all of you coming up the ranks in this journey. . . .fight for your own health right along side your kid's!"

There are, of course, thousands of autism antics and stories to tell from so many Mom's and Dad's raising autistic kids and their wonderful siblings who contribute so much to their brother's/sister's lives.   These families are the 1 in 50 that I so wish I could someday meet in person, share a cup of java, swap war stories, laugh a little, cry a little, and at the end of the day call friend.

And so as April's Autism Awareness 2013's Chapter ends, rest assured a new one will begin next year full of blue this and that.  Meanwhile, those of us who are members of the 1 in 50 Club will continue along our way writing our own journey's Chapters. For us there may be many new Beginnings, a few   Middle Chapters, but definitely no End to our stories. 

IT'S A FIELD OF DREAMS AND HOPE FOR THIS AUTISM FAMILY

I was cleaning out the garage yesterday getting our therapy gym organized and ready for yet one more piece of equipment. I came across a couple of pictures that swooshed me back in time to years I just soon forget. On the other hand, those years I soooo long to forget, are years that changed our lives FOREVER!
The first picture (below) is Mitri, age four at Central Citrus Little League T-ball. Our little guy is the frail lookin' dude, back row, first one on the right with his arms crossed in front of him looking scared to death.

The next attempt at baseball, and playing well with others, was the very next year. (See below) Dimitri, age five, Central Citrus Little League. Yup, our boy's still the frail looking little dude, front row 2nd from the right.

It's now 2013. Mitri's age 12 and on Central Citrus' Little League Challenger Division! This is what my husband had to say. . .

Barry Switzer once said ... “Some people are born on third base and go through life thinking they hit a triple.”
My son Dimitri never had it that easy. He's had to face far tougher pitching. Sometimes the umpires have been a bit unfair. He has had to run against strong winds all the way there... But as this photo metaphorically shows ... He is going to make it safely to third base too.
And with his All-Star Mom batting cleanup, he is sure to be crossing the proverbial plate one day soon.

God I love that kid!'

Me, I just keep on sayin' "knock that autism out of the park and bring 'er on home Mitri!

HERE WE GO AGAIN. . .

"AUTISM SPEAKS" IS LIGHTING IT ALL UP BLUE

Don't you just love the month of April? Spring is in the air. Flowers are starting to bloom. Trees are losing their bare winter limbs being replaced by lush green leaves. Kids are out riding their bikes, playing catch, doing kid things and just being kids. Neighbors are out walking their dogs or working in their yards. There's a sense of renewed life and hope swirling around the air. Ahhh, don't you just love April?  *screeeeeech* Wait a minute. . REWIND. . .bloody hell, this is not my reality!  I HATE the month of April. . .everything is soooooo BLUE in my reality!

 BLUE Empire State building  ~  BLUE Qingdao TV Towers in China  ~  BLUE Niagra Falls in Canada ~ BLUE  Christ the Reedeamer in Rio ~  BLUE Table Mountain, South Africa ~ BLUE  The Palace of Fine Arts - Mexico City, Mexico ~  BLUE  The Akashi Kaikyo Bridge - Japan ~ BLUE Sydney Opera House - Sydney, Australia ~ BLUE  Palace of Culture and Science - Warsaw, Poland ~  Even the Great Pyramids in Giza, Egypt are freakin' . . . BLUE!

Oh, then we have blue light bulbs, blue shirts, blue Coleman Lanterns, blue milkshakes (yuck), blue decorations for our houses. . BLUE, BLUE, BLUE. . EVERYTHING IS SOOOOO BLUE!

When we first moved to the sunny south from Massachusetts, when Mitri was around 2 & 1/2 yrs. old, we just loved the fact that come the 1st day of Spring everything was blooming like crazy. The grass was green, the black racer snakes were slithering about, (okay, I didn't like that so much), the Crape Myrtle trees were on their way to bloomin' like nobody's business. And the kids, well, they were all starting baseball, bike riding, golfing, swimming, and totally enjoying the 80-85 degree weather. Paradise! Simply paradise! No blue in our lives!

Fast forward about 10 years. April is upon us. It's still physcially paradise where we live, now, however, their is a curtain of  BLUE that's draped over everything. It's not even the tropical paradise blue of the Carribean. . . it's a stormy blue color. You know, the one where the Heavens open and it pours cats & dogs. The waters rage like it's gonna  gobble y'all up in one big fat stinkin' wave! You go under, deeper and deeper until your heart feels heavy, but your body is weightless, and you can't breathe. Yup,  it's April. . . Autism Awareness month AGAIN and everything is stinkin' BLUE! I think to myself,  "Really? We have to go through this again! I don't think I can take another BLUE April with more of the same propaganda! Makes me just want to bury my head in the sand until May!"

The "Light It Up Blue" campagin of Autism Speaks has been going on for 6 years now and I often wondered why the color blue? What the hell does the color blue have to do with autism? Why not red?  Or Yellow? Green or Pink? How about purple or black?  I think, those of  you who live with autism 24/7, would agree with me that one color does not quite capture the many facets of our autistic lives.

In our house, it’s a “BLUE” day when Mitri has a meltdown. . . screaming at the top of his lungs, smashing everthing within his reach, hurting Mommy with a big old fat BLUE bruise!

A “RED” day when I’ve had enough! When mommy is overworked from her daily duties: dishes, laundry, homeschooling, playing occupational therapist, speech therapist, behavioral therapist, cooking three different dietary meals, balancing check books for our business and home, appointment scheduler, seamstress for the clothes that don’t fit our sensory sensitive kid, and yada, yada, yada.

GREEN . . . .a perfect color for when the “GREEN-EYE-MONSTER” hits because all your friends (or use to be friends, but that’s a whole other post) are going out to dinner with their husbands on a weekly basis, getting mani-pedi’s, lunch and shopping with the girls and you can’t because, well, there’s no room in your life for such trivialities and you don’t have the money because it’s being spent on important things like DAN doctors, supplements, therapies, building a home  therapy gym and all the paraphernalia that goes along with that, special dietary foods that cost three times more than supermarket brands, non-toxic household cleaners, air purifiers, natural, sulfate & paraben free toiletries, & last but not least special educational teaching materials because there’s no school choice or tax breaks for home schoolers.

YELLOW. Oh, warm, sunny yellow for those days when happiness and hope snuggles our entire being because Mitri has made even the tiniest of improvements and is not screaming at the top his lungs because he's in pain and can't tell us.

Here's a little history on the significance of the multi-colored puzzle piece that has come to be known around the world as the symbol of Autism Awareness:  The puzzle piece logo was first created in 1963 by the National Autistic Society. They explain “The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’.” Since then, the interlocking, mutli-colored puzzle piece has become the international symbol of autism. Its significance has become multi-faceted. For some it represents the mystery and complexity of the disorder, for others it represents the mechanical nature of an autistics persons thought process. The bright colors are said to represent hope.

I'm not going to speculate as to why the world's largest organization for autism decided, six years ago, to unilaterally change the multi-colored symbol for autism awareness that has been in place for 50 years. Personally, I don't give a diddley why they did it! I am not a huge fan of this organization, or any other autism organization, that blatently and willfully disrepects those of us who's children have been affected by vaccine-induced regressive autism by NOT putting their financial resources toward conducting serious studies of vaccined vs. unvaccinated children as it relates to autism. Instead, they march down Medical Mainstreet, USA with the CDC, Eli Lilly, Pfizer, Roche, etc. touting vaccines don't cause autism and work hand-in-hand with pharma executive s on a “pre-competitive consortium” (some might call it a cartel) with Autism Speaks consisting of Pfizer, Roche, Lily, Novartis and Janssen to develop new medications for this large and potentially captive population. This group, in partnership with  Autism Speaks, can only benefit from swelling autism numbers (See AoA's article dated 3/29/13 - link below) http://www.ageofautism.com/2013/03/geraldines-land-of-opportunity-as-1-in-38-became-autism-speaks-new-normal.html

Ouch. . now ain't that a slap in the face to those of us who know different and are currently raising children who regressed into autism after vaccinations. Even the co-founders Bob and Suzanne Wright of Autism Speaks watched as their grandson regressed into autism: On NBC’s Today Show and MSNBC on Feb. 25, 2005 Wright explained how he and his wife “watched helplessly” as their grandson, an apparently normal toddler, rapidly deteriorated and lost his ability to interact with the outside world. “Suzanne likens it to a kidnapping, as if someone had taken away the life he was meant to live,” Wright said. Even on Autism Speaks web page under the  "About" section it states that they are ": . . .dedicated to funding research into the causes, prevention, treatments and a cure for autism. . ." (http://www.autismspeaks.org/about-us)

Let's pick the above statement apart just a little (indulge me here a minute):

DEDICATED TO FUNDING RESEARCH INTO:
1. the CAUSES,
(Plural, which means there are many - we've seen the genetic studies AS, where's vaccinated vs. unvaccinated children study. . you know apples to apples studies)

2. PREVENTION,
(Prevention means "the act of preventing or hindering". In this case autism. Where's your prevention treatment AS? Early intervention? Better diagnosis? Look how well that's turned out. Check your stats on the rising number of autistic children. Try again please!)

3. TREATMENTS,
(Oh, this a blog post or a book in and of itself! Let's see, you've got the therapies covered: SP, OT, PT, and ABA. But wait.  . . a lot of insurance companies don't cover these treatments, nor are all these treatments available in every area, especially rural areas. Are y'all workin' on that? How about the non-traditional treatments that HAVE helped so many of our children? You know the one's that the Mainstream Medical Profession calls "QUACKERY": biomedical treatments, hyperbaric oxygen treatments, M-B12 treatments, natural supplments and better nutrition including GFCF diets, Specific Carbohydrate diet, no GMO's etc. Yeah. . .I don't see y'all booking these families for stories about how these treatments have helped!)

4. and a CURE for autism.
(Naaahhh. . .not going here.)

Listen, all you "nay-sayers" and Face Book "un-likers", I'm truly not saying that AS doesn't do anything for our community. What I am saying is that their focus "AWARENESS" is not in keeping with their statements on what they are dedicated to. They need to widen their horizens, get out from under the CDC and pharaceutical companies umbrella and take a damn leap of faith and do some studies, listening, very closely  I might add, to what so many of us have experienced - VACCINE INDUCED REGRESSIVE AUTISM. It's not a dirty word for gosh-darn sake!


WAKE UP PEOPLE! The ANSWERS have been right in front of your face for a decade now! IT'S ACTION TIME NOW!

I am just so, SERIOUSLY, SERIOUSLY DISAPPOINTED with the most funded and highly recognizable autism organization in the world for their lack of due diligence concerning vaccine induced regressive autism studies. As I sit here pouring my heart and soul out to perfect strangers (and risking my FB likes decreasing, which BTW, so be it if that happens after this post, my darling husband and I didn't start the page up to win any popularity contests, but instead to help, counsel and give hope to those coming up the autism ranks behind us), my mild manner husband is embroiled in a Tet-a-Tet with perfect strangers too regarding the even newer news that the CDC has put out AGAIN that VACCINES DON'T CAUSE AUTISM. Moreover, I find it ABSOLUTELY APPALLING  that AUTISM SPEAKS backs the CDC without even conducting their own an apples-to-apples study on this subject. REALLY. . .AUTISM SPEAKS! You, who  started your organization as a result of a vaccine-induced regressive autistic grandchild, how hypocritical can y'all be!

Okay, so by now you've probably picked up on the fact that I typically never run  the streets of  Mainstream USA. I'm a rebel, plain and simple. I won't appologize for that. It's done me well, these many years.  I don't like injustice, especially when it comes to children. I don't like government or large organizations telling us what to do with regard to our children, our lives, etc. AND, I especially don't  like being lied to by the very government & organizations that are sworn to protect us and our personal liberties. AND YES, a life of autism for my child is a DEFINITE infringement on his personal liberty. Will our son be able to get a driver's licence at 16 like his neuro-typical peers? Probably not. Will he be physical and mentally capable of going to college? Don't know, time will tell. Will he be able to hold a job? Again, don't know. Will he marry & raise children of his own? Again, don't know. Now, I know these things are not definite yeses for our son's neuro-typical peers, but they have a better shot at it than our son does. And the kicker is, in my opinion, this could have all been avoided for my son and the millions of children around the world who suffered from vaccine-induced regressive autism IF there were equal parts ACTION and AWARENESS thirteen years ago.

SO, BACK TO THE BEGINNING . . . April is still coming, Autism Speaks will still  light the world up blue, the CDC will still be touting that vaccines don't cause autism, money will still be wasted on frivious studies and the autism rate will continue to rise, news outlets will continue reporting what MAINSTREAM tells them to (yea, this includes you too Fox News. . .we're so fair & balanced), and the ridiculousness of it all will go on and on and on, all while millions of autisic families are struggling daily taking care of their children that can't take care of themselves, working 24/7 to pay for their care, and hoping their child will have as happy and as productive a life as their non-austistic peers.

Me? How am I'm going to cope with APRIL - VACCINES DON'T CAUSE AUTISM AWARENESS MONTH? I will be taking a break from all the BS! (No news watching, only another go-around of Alias and some music listening) I'm going to watch our son and his new friends have fun at their baseball games (yes, I'll be posting pictures ad naseum). I'm going to read outrageous supernatural, paranormal, werewolf, vampire good vs. evil books on my Kindle and of course rooting for the good guys (oh yes, something that takes me far, far away). I'll also be enjoying some Orthodox Lenten & Bible readings for our Pascha season and teaching our son about it all.  I might even get my husband to take me out on a date! Lucky too? We shall see. . .LOL! I'm going to play, play, play with my boy in our garage therapy gym doing. . .well, sensory therapy stuff, of course!. And lastly, there is one thing I'm going to do, that I've been wanting to do for years now during  the month of April. . . RAISE MONEY FOR AUTISIC FAMILIES. What better way is there to spend Autism Awareness Month than to try to provide hope and help for those 1 in 50 children and their families!  I can't think of anything better to combat those April Blues, can you?