Let Me Cry

Tomorrow is our son's thirteenth birthday.

Today I learned I might have bladder cancer.

Today we suspect our son's seizures are back.

Last month we learned my father's cancer is back.

Four days from now is Mother's Day.

Life does go on . .  but for now, all I can do is cry.

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?

Hi-Ho, Hi-Ho, It's Off to Work I Go!

Tuesday, March 12, 2013

Today is baking, cooking & cleaning catch-up day #1. . yup all in one shot! Of course I couldn't pull this off without the help of my husband (who took Mitri to school this am & will pick him up after school) and my mom (who picked Mitri up for lunch and will be returning him back to school for his afternoon session). Sounds like an easy thing to coordinate, but it's not in our crazy family!

Husband's in real estate. When a customer calls & wants to list, buy, or sell, you drop everything & go! Monies at stake!  Mom, is well, Mom! She too is in real estate, except she's owns it & manages it. She's also in the travel business, she's owns that too. She's also on various boards, committees and writes for the local newspaper (travel articles). Needless to say, she's harder to book for Mitri-coverage than the President. 

Now I know as ASD moms & dads we all have a shit load of things to do & usually multitask like no body's business. But when my darling husband ask me this morning "what are you doing today?", I thought he was going to choke on his morning vitamins as I rattled off the list without thought. I usually don't do this and just say "oh, stuff & such", but today I guess I thought it was important to bring to light the fact that I work my ass off everyday, 24/7, even when Mitri isn't home! Now, in defense of my dh his question was perfectly normal. . .my reaction wasn't.  Seems I had already had my back up when my mom, a few days ago, ask the same question when I asked her if she could pitch in this week, so I might catch up on some things since I lost a few weeks or so with being sick myself, then Mitri was sick, then I sprained my wrist, then, then, then. . . 

I guess I've always been "sensitive" to the fact that I'm a SAHM by choice. I've been down the career road, been in the Board room, wore the high heals, stockings and designer suits. I've had ("had" being the operative word here) perfectly coiffed hair, meticulously manicured nails, and traveled the world. When our son came along, it was the choice I made to stay home & take care of my boys. It was the right choice then & still is the right choice for us. The only caveat I will add is this: IT ABSOLUTELY, POSITIVELY FROSTS MY FANNY WHEN PEOPLE THINK, BECAUSE I'M A SAHM, THAT I DO NOTHING ALL DAY BUT SIT ON MY ASS, EAT BON-BONS AND WATCH SOAP OPERAS. . . .MY LIFE IS A SOAP OPERA (super G rated of course). . .I'M A MOM OF AN AUTISTIC KID!

Moral of the Story:

     NEVER, NEVER, NEVER ASK AN ASD PARENT WHEN THEY ASK YOU FOR HELP WITH THEIR KIDS "WHY, WHAT DO YOU HAVE TO DO TODAY?" JUST DO IT! IT MIGHT JUST BE THE ONLY SPEC OF TIME THEY GET TO THEMSELVES TO CATCH UP ON THEIR ASD LIFE.

As for this ASD mom. . .who now wears the same chlorine stained sweat pants 3/4 days in a row, tank tops, no stockings only barefeet & Birkis, no manicured nails, no coiffed hair, and occassionally a little make-up. . .today is done: the GF raisin bread is made, as is the GF bluberry bread, the master bath shines like a new penny, laundry is done (for today anyway), phone calls are done, check book mostly caught up & bills are paid. Tomorrow. . .new To-Do-List. . .same chlorine stained sweat pants!

A Lonely Thing This Autism Can Be. . .

It's 7:30 p.m. and the house is quiet. Mitri is sleeping. Husband is in our living room recliner as quiet as his snoring will let him be. Me, I'm still up roaming about like a "child of the night" restless with my thoughts yet weary. 

Do I settle in bed and watch a t.v. show? Nah. . .not interested in neurotypical perfect people doing perfect neurotypical things. 

Do I read a book? Yeah, let's fall into a good book. . . let's see what's on my Kindle: "Adolescents on the Autism Spectrum: A Parent's guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders" or "The Child With Special Needs: Encouraging Intellectual and Emotional Growth". . .no, too much thinking required. Oh, how about "Breaking Dawn"? Nope. ..sooooo not in the mood for a love story even of the supernatural sort. Maybe, finishing where I left off in the Old Testament? Now, that's a good idea. . .always read the OT when your lonely and blue because you're life doesn't see so miserable in comparison. Oh. . .not tonight. . .too much, well. .  just too much! I know, let's really escape reality by falling into "City of Fallen Angels" or "Supernatural Witch's Canyon" or "Half Past Dead". Nothing like a good kickin' some bad guy demon ass to make you feel good . The good guys always win, right? I like to think so, but that's a whole other post for another night. No, really not up for ass-kickin' tonight. Wow, what's wrong with me tonight, I'm usually always up for some good ole butt-kickin', supernatural or otherwise!

Okay, how about some snugglin' & heart-to-heart chat with husband? Damn-it. . .he's in the chair sleeping. I can't really get mad at him, he's been pullin' a lot of Mitri duty lately including taking the brunt of the meltdowns lately. (Mitri usually comes after me when in a Dr. Jekyll & Mr. Hyde moment so my knight and shining armor usually gets between us so Mitri can't hurt me.) I know, sweet, I agree. I love that man!

So, here I am. . .a "child of the night" again with nothing tickling my fancy.

Oh, oh, maybe a chat with a friend? A little mom-to-mom commiserating? Let's see now, who should I call? Oh yeah. . .no freakin' friends. It's hard to keep a friendship going when you're raising an autistic child. A friendship is a give and take kind of thing. Your there for them.. . they're there for you & yada, yada, yada. But most ASD mom's I know don't have the energy nor the time to give a friendship what it deserves: a shoulder to lean-on, cry-on, laugh and be silly with a glass of Sangria together, girl's night dinner or shopping, date night with another couple. You think I'm kidding? I don't think so. . .who wants to constantly hear about how many times your kid went poop in a day, if he went poop at all. Or, how about what gluten-free foods your making that actually came out great because you're kid can't eat gluten or very little. Never mind bitching about how much more gluten-free foods cost and how exhausted you are making them from scratch. Oh better yet, the melt-down your kid just had over something most would consider trivial. Let me say this loud and clear my dear friends, CONVENTIONAL PARENTING DOES NOT APPLY, so don't even go there! Or, how you can't make it to a dinner engagement, even if you have a sitter, because your discretionary funds account had to go to specially compounded medicine that insurance won't pay for, but your kid needs because it's his lifeline. Not to mention the cost of vitamins and supplements that your kid needs to take for his compromised immune system, mitochondrial dysfunction and a whole host of other dysfunctions.

Or the fact you decided to spend money out of the general fund on building a therapy gym in your garage because of your kiddo's Sensory Integration Disorder. (Just in case your kid's insurance gets cancelled and  he can't go to OT anymore.) What's sensory integration disorder? REALLY? My dear friend, you've known for years that our kid has SID in addition to autism, GOOGLE IT!  Nope, no patience either to give toward friendships. Time is typically of the essence in an autistic household because anything could happen at any moment and like a solider in the field, y'all got to be prepared and on guard every minute of every day! Yes, my dear friends . . . IT'S EXHAUSTING! 

So you see, I have absolutely no time, nor the energy to cultivate a friendship. If I'm not monitoring poop, I'm  cooking GF, or helping our kid wade through the myriad of social bull that's out there, so he can calmly and independently some day be on his own, or I'm making schedule cards or reminder cards to help him daily keep track of our already busy life with therapies.  Schooling him on things that he's not learning in school.  In addition to regular household chores and keeping the books for my husband's business. Sad, I know. But don't feel bad for me. I've adjusted. And, guess what? As hard, lonely and crazy as my life has become, it's actually much nicer. Simpler. I see the world now uncomplicated as my son sees it. I don't always like what I see or encounter outside our four walls, but in the grand scheme of things, it's pretty damn good!

And when I can't sleep, get blue or lonely I simply kiss my sleeping jedi padawan goodnight on the cheek  and thank God for my little shining star that guides me through the darkness.

Daddy's Whispers of Golfing With Mitri. . .Little Did I Know Back Then.

Citrus Hills Golf Camp Summer of 2010. . . .(Mitri age 10)

Six years ago, when Dimitri was 6 yrs., we tried out the summer Golf Camp here at Citrus Hills. At that time we needed to get Mitri into some activity that involved other children for socialization purposes. My wife was home schooling Mitri and busy 24/7 trying to heal his body that had been overburdened with toxins. As a result, we thought it best to keep him home. This, of course, didn't lend itself to many opportunity for Mitri learn to play and get along with other. We tried little league, tennis, bowling and the like with some short term success. 'What about golf?", I thought. It's pretty much a play against yourself type of game, but at the same time you need to follow the rules and learn to be respectful of other plays and/or teammate. Well. . over the years, the progress has been unbelieveable!

In 2006, the first year of Golf Camp, Mitri & I attempted to play in the end of camp Father& Son Putting Tournament. That evening Mitri blocked three of my putts like a goalie defending his Stanley Cup Titleturning  1 foot tap ins into to 20 footer.  But, he was having fun ... and so was I.  Not a lot of golf ... but a ot of fun.

Fast forward to 2010. . .  Same Father Son Tournament ... Dimitri  made a 6 foot putt on the 2nd to last hole and an 8 footer on the last to. . .  secure ... THE WIN!!!

We actually beat all the other 72 teams and won the 1st place trophy. (See below as he is accepting our trophy ... and notice the shock in his Mom's voice as Dimitri proceeds to walk right up himself, in front of 200 people, to collect his prize.) Didn't see THAT coming!

Dimtri Win's 1st Place

http://www.youtube.com/watch?v=ZWXzH9zMjIE

With A Little Sunshine Some Rain Must Fall

     Yesterday was our son's first full day of school! May not seem like a big feat to you, but to us, who have been a home school family most of our son's life, it was a magnanemous step forward. But, with every step forward there are always steps back.

     We did our usual (but not usual for this day) late afternoon routine: 4:00: home & transition
4:30: start to prepare for homework
5:00: homework (late for us, but I figured if I could keep a similar routine we'd be out of the woods. . .ha,ha,ha, jokes on me)
5:30: dinner
6:00: shower (oh it looks like we're gonna be right back on schedule)
6:15: "Mama, can I have a little extra computer time?" "Sure", I said, thinking to myself, "oh Mitri's had a long day, he did great on his first full day, what could a little extra computer time hurt." Too late. . .mama's screwed now!
7:00: nighttime vitamins &  bedtime w/back rubs from dad (okay, somewhat back on schedule again albeit 30 minutes late. We should be fine.)
7:10: MB12 shot from mom, kisses & hugs goodnight.
Whew. . .we made it! He's in bed & I'm off to the showers, grab a bite to eat, check facebook & email, t.v. show/reading then lights out for mama!
8:30: "Mama, I'm having trouble falling asleep!" (Shit. . .no rest for the wicked) "No worries Mitri. It's been an exciting day I know. It's okay to be a little off our schedule. Let's go back to bed, mama will tuck you in again.okay."
9:30: "MAMA" (shouting & crying now) "I'm NEVER going to go to sleep! NEVER, NEVER, NEVER! My sheets are too hot" (Now, I'm pretty much close to comatose) "Mitri. . .come in & snuggle with mama. Mamma's sheets are cool. I'll turn on the fan too!" Snuggle for about 5 minutes then, "Mama, I'm going  back to my bed okay?" "Yes Mitri, of course it's okay". "I hope I get some sleep, mama. Can u tuck me in?" "Yes, Mitri, I'm coming."
10:30: All's quiet.
11:30: Mama's sleeping ZZZZZZZ
02:30: Mama's up to go to the little girls room, checks on Mitri, he's still awake! "Mitri have you been awake all night, honey?" "Yes, I'm never, never going to sleep." Snuggle, kiss on the forehead & a reassuring "Yes, you will, honey." "Nite mama, I love you." "Night Mitri, I love you too." (Oh boy, are we gonna pay for this!)
5:00: Don't really remember what happened after the crash, boom, banging of our bedroom door. I do know I dragged my ass out of my nice warm bed, showed my face to Mitri, turned around to go back to bed, closed the door & locked it. (Dad covers the 4:00am to 7:00am shift) It's now Thursday a.m.! Three hours sleep! Oh, it's gonna be one of those days. Extra strong coffee for me, please! Oh well, on the bright and sunny side of things, he made it through a full day of school and he loved it! We really couldn't ask for anything more! Yeah. . .few hours more sleep would be nice!

Shhh. . .Almost Whisper Time! Wahoo!

Less than two hours to go & this 'child of the night' can blog. Wahoo! That's if I can stay awake. . .LOL! It's only 6:00 pm here in the sunny south and I'm completely, utterly, & totally wiped-out!   Why? You ask. Oh for goodness sake, I'm the mother of an autistic child. Tired is in my job description! Isn't it in yours? Chat later. . .