On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
November 28, 2011
This is our "Life with Autism" Christmas Mantle decoration for the holidays. Well, the picture represents our "Christ-Giving" decorations. For all of November, I have Fall/Harvest/Thanksgiving decorations out. Then the week of Thanksgiving, we put up the Christmas decorations. Thus, our "Christ-Giving" week of family & fellowship at Thanksgiving. Then after Thanksgiving, all the "Give Thanks" and Fall/Harvest/Thanksgiving Turkey decorations go back in the attic.
I have to chuckle when I look at our mantle and that Nativity scene. When typical people look at their decorations, most likely the first sentiment they think of is the memory behind the object. A family heirloom, the child's first ornament, etc. But as an autism warrior-mom, when I look at a Christmas decoration in my house, I think of how many before have perished before I learned the fine art of velcro and super-glue. Now, all of our Nativity things are cemented to a board by super-glue and velcro, then triple velcroed to the actual mantle. No more Brandon helping the wise men reach their destination quicker by launching them through the air. No more migranes for Mary after she was thrown against the wall by a caught-red-handed Brandon as he ran off after ditching the evidence of messing with things he knows he's not to mess with. No more finding the little drummer boy swimming in the toilet. Gotta love decorating "Autism" style!
But back to the Nativity scene in the picture...
Today was the "back to reality" day after a wonderful week with family here for Thanksgiving. All the cooking done, all the leftovers eaten. All of the quiet after all of the laughter from game after game that was played. The teenagers upstairs on play-station, the children in our playroom/fort under the stairs that Todd built to resemble what a treehouse would be outside; and us "old folk" at the tables playing cards...
So yeah, that back to reality brought a tedious day of picking up where I left off before last week, - in trying to answer parent e-mails, trying to find a doctor to help Brandon, trying to track down some lab results, while faxing others to yet another doctor clear across the country.
In trying to determine when my world would start spinning again. As the mom of a Navy-man about to go off to Boot Camp, I feel like I'm in a time-warp. A black hole where while everything else goes on, my everything is in a stand-still. Wondering if Matt will leave next week as planned, next month, or the one after, etc. As a mom of course I want any extra moment with my son. As a mom I know that the sooner he goes, the sooner he comes back.
This trusting in God's timing thing has always quite frankly frustrated me. I believe in it. I know it to be true, but it's still hard. I haven't mastered patience.
God knows that. And that is why when Brandon's cup went missing yet again today, --- I was inadvertently blessed yet again by yet another dose of his perfectly balanced blessings.
(see link below for original writing on "Perfectly Balanced Blessings")
Brandon has this unbreakable habit of leaving his cup wherever he walked off to when he drank it. Always seeming to perfectly balance it in the oddest places. We've found it on a pillow on his bed. Perched on the edge of the couch. In a remote corner of the garage atop a tool. In the middle of the floor. On the banister. On the TV. On a chair.
Most often when we find it in such a precarious place, it's because we need a laugh.
But today, I found it in my Nativity scene.
Because I needed a lesson.
God knew that all I was thinking about and doing today, were things that are not in my control, but in His. So he directed Brandon to put that dadblasted cup in the only place in my house that so fully represents that.. Under the cross, in the Nativity scene, with Baby Jesus. By the Angel that was right next to the big "Give Thanks" Thanksgiving decoration.
As with each time, in each place I have found his cup, I could only smile and shake my head in total humbled amazement about how God uses such a boy as Brandon, to be such a Blessing to me. God doesn't need a perfect person to make his point. All he needs is a person willing to deliver a perfect message. Today God used the sweetest, simplest boy to direct me to the simplest answer to the most complex, perplexing thoughts I was having.
The answer to any problem, stumbling block, challenge, loss, need, -- anything that threatens to steal anyone's Christmas Joy this season, can be found where I found Brandon's cup today. Right there by Jesus. Right at the cross.
I don't know if I'll get any help with Brandon's medical needs. I don't know if his seizures will ever stop. I don't know if Matt will be here this Christmas or not...
But what I do know, what memory I will cherish this Christmas and every Christmas to come, is the finding of Brandon's cup. Having all the questions that haunted me, answered in finding a green cup. I found peace in finding that cup today. And that green cup will remain right where it is. Super-glued alongside the figurines.
Reminding me to...
Leave my burdens at the cross.
Give my worries to Jesus.
Know that Angels are watching over him.
When things don't go as planned, when people threaten to steal my Christmas joy, I will only have to look at my mantle, see Brandon's cup, and be reminded of how this child of mine, this boy who society treats as the least of these, who bullies laugh at and call stupid, this boy who doesn't even know what Christmas is, --- lead me to God's Perfectly Balanced Christmas Blessings.
Thank you Brandon....
Read the original "Perfectly Balanced Blessings" by clicking here
~ ~ ~
November 21, 2011
I think it's the Asperger's in me that dictates how sometimes I relate better to animals than people. So it's no wonder that my 40-something years of life on this earth have always been filled with animals.
I remember when we were looking for a family dog a few years ago after our previous dog had been hit by a car and needed to be put to sleep. Being an autism-family, you can't just go "pick a dog." It has to be right for Brandon. Good breed, good temperment, etc. I was searching online and found a website of a local breeder. Champion Labradors and other breeds. Right here in the same city where I live. I looked at the prices and quickly surmised that we could never afford that. But, something made me e-mail the owner, Kelli. I don't remember our conversation, but it centered around looking for a dog that would be a good fit for Brandon, our son with Autism. She invited me out there, she had a puppy needing a home and we might be able to work something out. The moment I saw that little Chocolate Labrador that had a cut on his head from unfortunately having his head in the line of fire of his brother's sharp little teeth -- I fell in love. He was exceptionally sweet and cuddly because Kelli had been holding him in her lap for a great portion of the day, with a warm compress on the cut. There was just one problem. When you have a child with autism, you have no extra money. I guess she shared that with the co-owner of the dog - and long story short, Brandon had a new puppy that was given to him out of the kindness of a stranger's heart who lived several states away.
Matt, my other son, named him Chevy. After his truck, a Chevy Silverado. (gawd I feel sorry for Matt's baby one day!)
Though Chevy comes from Champion lines -- a Champion mother and father -- he was never formally trained by us to do great things. Yet it will never escape me how great things have been done through him regardless.
I remember the time, in a moment of human normalcy (Autism parents can't have "human" moments, we must always be in Super-hero mode. Nor can we have "normal" lapses of memory like normal people do, like forgetting to lock one of the dozens of things we must keep locked in our house at all times, lest we want a flood, fire, or a flight risk) one of us left the yard gate unlocked. We each thought the other one had eagle-eyes on Brandon, so we weren't alarmed by the knock at the front door. We opened it to a neighbor we didn't know, but who apparently knew Brandon from seeing him out front with us on occasion. And knew enough about him that she shouldn't have seen him two blocks down the street on her way home. Todd was the first one to fly out the door in the direction she pointed. When I got there, I saw Todd coming up to Brandon. And there was Chevy. I guess Chevy thought Brandon was taking him for a walk, but knew enough about Brandon by instinct I suppose, that he should stay between him and anyone else. And that he did. When Todd got there some man was coming out of his house to see why a kid was hand-flapping in his front yard. Todd said by Chevy's stance between Brandon and the guy -- that the guy would never have gotten close enough to Brandon to ask him why he was hand flapping in his front yard.
And in yet another moment of human-normalcy that we aren't supposed to ever have in being parents of a child, youth, and now young-adult with autism -- Brandon escaped our radar again. I swear, Brandon can smell an unlocked gate or door from a mile away. I must find a way to cash in on this extraordinary skill of his! So we found ourselves frantically looking in all Brandon's hiding spots in the house, to no avail. I went in the back yard, only thing there was Chevy barking at the kids in the park. If I wasn't so busy looking for Brandon, I would have told Chevy to shut-up! Then it hit me. Chevy never barks with that pitch of bark. Chevy never frantically sniffs the air like he was doing. Chevy never barks like that, sniffs the air like that, nor shuffles nervously while looking over the fence like that. In the split-second I put all that together, I yelled in the house for Todd to go to the park. Brandon was there. Chevy knew he was over there and shouldn't be and he wasn't going to stop barking like that until we figured it out too.
Chevy, our sometimes psychopathic, annoying, loving, sweet, silly, hyperactive, smart dog. The dog who lays under my desk the entire time I'm at my desk working. The dog who can smell when Todd pulls in the drive way and is at the door waiting for him before I even know he's home yet. The dog who jumps on the trampoline with Brandon, puts up with his pinching and pulling. The dog who somehow understands that when Brandon does the sign for "more" that he must do "more" of whatever it was he was doing that amused Brandon. The dog who knows that when Brandon shoves him off the couch, it doesn't mean he's being mean, it means Brandon wants him to chase him. The dog who loves Brandon not for the affection he shows, but because of the food trail he leaves in his wake....that somehow makes it all worth it.
So imagine how I felt when I had to give up this dog. This dog who had become my therapy dog more than Brandon's.
The reason for that being as complicated as "Life with Autism" is itself. One that could never be fully fleshed out in one writing. One that has never been truthfully or accurately portrayed in any autism awareness campaign by anyone. Autism is merely sensationalized. Not even close to being accurately scrutinized in all the agonizing aspects of autism and just how far in a family the ripples of it extend.
Before August 2010 all our family had to deal with was autism, leaky gut, occasional cycles of seizures. Then after that date, it was all of that and the most relentless seizure cycle to date. Hundreds of myoclonic seizures a day (we didn't ever really count those, but they were there) as well as 3-4 Grand Mal seizures a day, every other day, every week. Not one break from any of it for over two weeks time since then.
It took a toll. A heavy toll. When my son wasn't having or recovering from a seizure, being picked up from school from a seizure or missing school from seizures, he was incessantly humming in some attempt to re-start his body systems no doubt. My husband and I were on constant alert that truly necessitated those super-hero powers all parents of autism must have. Again, no room for "normal human" behavior. No. Not with autism. Not for a second, not ever. Hence the toll autism takes. Add anything extra, and you have the very reason the stress of autism parents has been compared to the stress of combat soldiers. On the battlefield, combat soldiers can never be off guard. Nor can autism parents. The war for a combat soldier once home, never ends. Nor does it for an autism parent who must look in their child's eyes every single day and see the battlefield where they must continue their fight to reclaim what is still being taken by the enemy. No, normalcy has no place in "Life with Autism". When "normal" human behavior happens, their child wanders and most often drowns. When that happens their child has a seizure and falls down the stairs where they could potentially be killed. When normal happens, our kids get abused, neglected, or murdered.
While I have great Hopeism, choose Happy, and live Joyfully through all this, it still takes a toll. The few "me" moments I found myself with, all I wanted to do was go to the Nature Trails by myself. Not take a dog, not have to be responsible for anyone but me. The constant guilt became too much. My dog deserved better. He was still a puppy, he needed a lot of exercise. I could tell he was lonely, wanted to go for a walk too, but I had no time for multiple walks in a day. So I tried to find another dog to be a friend with him that he could romp with when autism got too busy and I wanted to just take myself for a walk. All that did was create two problems for me, instead of one.
Chevy was too active for the dog acquired to be his friend... So in desperation I contacted the breeder. A complete stranger to me in every sense of the word. Someone who owed me nothing. Someone who gave me everything in that free puppy a few years ago. And here I was essentially begging her to take him back because I just couldn't handle it anymore. If I couldn't save myself, at least I could save the dog that I loved so very much. I'll never forget the gut-wrenching feeling of driving him to her land. How horribly guilty I felt. Yet how wonderfully happy once there at how much he seemed to love running with the other dogs there. Room to run, new friends to run with, wrestle with, swim in a tub of water with. Thankfully a week or so later, Matt's girlfriend & family fell in love with the other dog. She was more a fit for their house than ours. They had just lost a dog, and the timing was perfect. I love how God works those things out.
And then I was alone.
No above and beyond the already above and beyond stress of having to care for one extra someone, albeit only a dog.
While the hole in my heart was trying to heal and I was getting some much needed "recovery" time, it did not ever escape me for one minute that the very reason I had to give up my beloved dog, is the very reason so very many autism parents find themselves in the position of having to give up their even more precious, even more worthy, even more beloved, - child with autism. I couldn't afford doggy-day care. I couldn't afford to pay someone to come run my dog.
Just like parents of children with autism.
All my dog needed was some friends to play with.
All our kids need are friends to play with.
All I needed was a place for my dog to go have fun, to get out of his stressful environment.
All parents want is a place for their children to go for recreation, to hang out, to have their own change of scenery.
All I needed was respite so I could refresh, recharge, renew.
That's all any parent of a child with autism needs as well.
It will never escape me how society doesn't get that. How churches don't get that. How autism organizations with millions of dollars to spend on respite that is desperately needed, don't get that.
But yet this stranger, this dog-breeder who knows nothing about autism, -- got that. She "got" that my dog just needed some time to run and play. She "got" that I just needed a guilt-free break. She "got" what my own autism community still doesn't "get".
Help. Real help. Tangible help. Free help. No waiting list help. Not ten-years-in-the-future-but-not-a-thing-now genetic kind of help. But rather someone being the right-here-right-now "hands" and "feet" of Jesus kind of help.
Something in her told her how desperate I was. Something in her told her to do that for me. Something in her told her I couldn't pay for the respite she was providing that I, and my dog, were so needing.
When I dropped off my dog, I had all his papers, to totally surrender him to her. I told her to find him a home with room to run and with kids to play with. She e-mailed me some time later. She asked if I was sure I wanted her to find another home for Chevy. But I just couldn't. I couldn't bear someone other than her, caring for him. She was Chevy's first mother. She cared for him when he had that cut on his head. Holding him in her lap, loving on him. But I knew she was too busy. So I told her I would come get him. My situation at home was still the same, but I'd had time to just care for me any spare moment I had. I felt I could better handle it all again. My super-hero powers were recharged.
I'll never forget the joy of having Chevy in my arms again. Of having above and beyond the already above and beyond chaos in our home again. Of my husband coming in our bedroom at night with the dog on his side of the bed looking at him like, "Where do you think you're going? This is my bed again!" (smile)
Kelli said that anytime I felt overwhelmed and needed a break, that I could bring Chevy back to her for some respite. For me, and for him. And that she wouldn't charge me.
I still can't comprehend that.
How autism organizations who have millions of dollars to spend just a portion of on funding respite programs that churches who have room to hold those events in -- don't. But yet how this woman, this stranger, who has no extra money, offered to help anyway.
And while we are all settled back into the crazy chaos that is our life with autism and my Chevy is back to standing guard beside me as I weed my garden, ready to pounce on any lizards, snakes, or bugs that may come out to attack me, I'll forever be grateful to that stranger, to Kelli, who saved this mom and her dog.
And I'll always wonder...
Who will be that person for Brandon one day?
When I can no longer care for him, who will offer to help?
Who will treat him like he was their own?
Who will be his Kelli?
Click below link to learn more about Kelli...
October 31, 2011
This cinder block has history...
And a few decades of sweat (and most likely vomit as well) permanently embedded in its pores from those brave enough to endure its relentless torture. As you can see it has the stain of the blood from those it has mockingly pierced as a testimony that there is no merciful day when it comes to this cinder block. This kind of old-school training. By this kind of old-school trainer.
Matt hates this cinder block.
He hates the pain it inflicts. He hates how it laughed at him and blatantly told him the first day that he lifted it, that he's not as strong as he thought he was. He hates how it taunts him and reminds him that while he is getting stronger, he's not as strong as he needs to be. As much as he resents this cinder block, he respects it. He brings it in the house each night he is home as a sign of reverence for what it represents. For what it will help him accomplish. He respects it for who its trainer is. For who it has trained. As much as he hates this cinder block, he loves it because he knows if he gives it the due respect it deserves, he can conquer it. And if he can conquer it, that means he is one step closer to conquering his dream.
He knows this cinder block means change. That he must change. That he must mentally become as hardened as the cinder block. Harder than its trainer. That he must become one with the cinder block. Yet somehow still retain all that has made him who he is.
And as I watched him come home from a hard night of training with it, then putting it on his already bloody shoulder to run with it some more after dinner with his Dad, I couldn't help but be proud of him. I couldn't help but think how much he deserves this dream he is chasing. But I know all too well because of autism, you don't get things you want because you deserve them, you get things you want because you chased them. And never stopped until you caught them. Treatment, Recovery, that elusive Cure. I can't help but be impatient in wanting to already know if this cinder block will get this son where he wants to be. Yet I know even if it doesn't, his journey will not have all been in vain. At all. Just like if I never get that recovery for Brandon, the journey will not have been wasted. We've learned too much. Grown too much.
Patience is taught by this cinder block. In pain. With blood. With sweat. With endless working. While endlessly waiting. In his training, Matt has seen another wannabe come and quickly go because of this cinder block. Much like with autism, you don't come to this cinder block tired expecting ease. In fact, you don't come to it expecting anything at all, except more work. And often pain. You pick up the cinder block tired and do not stop lifting it, carrying it, becoming one with it, until it is tired. And much like how autism never tires, cinder blocks don't tire. Which is precisely why SEALs aren't ordinary men. Autism parents aren't ordinary parents. And SEAL training isn't ordinary training. Life with Autism isn't an ordinary life.
I wondered what words others who have trained with this cinder block and who have gone on to realize that elite dream would use to describe it. I asked Matt what the cinder block means to him in training with it. He said words like "brotherhood". "Blood determination". Much like our "Life with Autism" has set our family apart from being "ordinary" to being transformed extraordinarily, he wants the set apart brotherhood of what training with this cinder block represents. Much like no one knows what living life with autism is like except those in that brotherhood, he wants to be one with each of his brothers who know exactly what he went through to be one of them.
Life with Autism has prepared us for this cinder block. It has been our cinder block. Nothing has been given to us. Nothing has come easy. Before our cinder block of autism we thought we knew all there was to know about life. Then when autism hit, we were starkly reminded how we really knew nothing at all about life. Nothing that matters anyway. Our autism-block changed us. Everything gained, has been gained by blood. Sweat. Tears. We've had to work harder for every victory. Wait longer for any accomplishment. We've been more deeply crushed by every defeat. Yet much like with Matt and the cinder block, we've developed callouses so that we could endure more and more, bear heavier and heavier loads, press on harder and harder. We've known that to get where we want to be, we have to over come more than most. Endure longer than most. Tolerate what most cannot. Do what most will not.
Though Matt is the only one who holds the cinder block, each of us are being further trained by it as well. And even though there is nothing funny about the cinder block, I like to find humor in what it's training Matt for. The Navy SEALS have a motto that they use in their training that says: "The Only Easy Day Was Yesterday". I like to think that with our "Life with Autism" motto of "There Are No Easy Days"... -- Matt will have a slight advantage going in...
But no.... I don't know the future... Every time I thought I did, it mocked me as the cinder block first mocked Matt, and reminded me that I know nothing.
I only know what I can see right here and right now through this blasted cinder block that sits by our front door...
And that is my son.
A man of faith. A man of determination. Of strength. Of indomitable will. And not of the ordinary kind of those things. Of the kind of those things that being a family living with Autism forges, which is much like what kind of warrior-spirit that cinder block forges for those who dare to pick it up..
This child who was raised by a Father and a Mother...who Never Quit. This boy who saw his brother with autism and seizures defeat death time after time...and who because of that will Never Quit... This teenager who excelled at all he did in part because of having a brother who couldn't do all he could do...and who because of that will Never Forget that and Never Quit. This man who will not be defeated by a bell at BUD/S... because he will Never Quit. This Christian who loves a God...whose plans to prosper him will Never Quit.
So much stands between my son and his dream.
He's come so very far.
He's got so much farther to go.
Only Matt knows how much he wants it.
Only God knows if he will get it.
All we know in the meantime, is of cinder blocks and sweat...
And prayers that will never quit.
October 24, 2011
I'm not sure what made me think of doing this... I guess for an escape from the heavy issues I've been facing lately my mind must have needed a bit of levity. Or lunacy. Knowing me, perhaps both.
Either way, I found myself thinking about my husband and how he has changed over the years since I first met him. As he casually remarked this past Sunday, "Nothing about our life is normal..... We're not normal, our kids are not normal... Our dog isn't even normal."
But I remember when we were. My husband especially. When I met him, he was pretty normal. Perhaps too normal. His family was, is, a very typical Bible-belt Church-going family. They are pretty routine, live simply, follow the rules, don't make a ruckus. They, like Todd, are really good people with good morals and good values.
Which when I consider what I and my free-spirited with attitude self had to bring to the table in our marriage, I could kinda see why his family got together and took up a collection in an attempt to bribe him not to marry me.
Coming from an Italian/German family - I was raised by Uncles who could have starring roles in any of the Godfather movies. And I mean that with utmost respect and admiration. I would always secretly tell my friends we had mafia connections and that anytime I wanted to I could send my Uncles after them. I think before I learned how to write my name in Kindergarten, I knew how to jew a vendor in English-town on the price of a piece of most likely stolen luggage. My Uncles made sure I knew the important things in life! Ha ha ha....
My family was big. Big fun, big laughs, big loud, and big 'if the food wasn't perfect at a restaurant, it went back and back until it was cooked right.'
Big opposite of Todd's quiet, to themselves, never complain about anything family. And I mean that with the utmost respect and admiration too.
It was just funny when we figured out how different our upbringings were. Ok so maybe not funny at first, but eventually!
I had bought Todd something that didn't fit. One day he was going to Wal-Mart and I gave him the bag and receipt and asked him to exchange whatever it was. He looked at me like I just asked him to kill his mother! He had never returned anything to Wal-Mart before that! While I, on the other hand, cannot count how many times while in Wal-Mart I had to stand beside my mother in horrified 'beam me away' shock as she would argue with a sales manager about why he wouldn't take ten extra dollars off a minutely scratched lawn chair (or any other item she wanted but didn't want to pay full price on) already on red-tag clearance.
Teaching Todd that he would not in fact die if he returned something to Wal-Mart was when my corruption of him formally began. Well, after the corruption of our Wedding reception. We had planned for everything, but not for the fact that my family drinks and his family doesn't. My family brought out the wine at the reception and it was like Moses had entered the room and parted the red sea. "Would all the hell-bound Catholic drinkers please go to the right of the room!" "Would all the heaven-bound Baptist non-drinkers please go to the left of the room!"
Todd and I still chuckle about that......
I like to think I brought a bit of insanity to his sane world.
And I know he's brought a bit of saneness to my insane world.
Life with Autism helped with that. It was hard for him to be serious when he walked in the front door and slid half a mile in a pile of poop I had missed during some tough "Leaky Gut" days my son with autism had.
He eventually quit turning red when Brandon would launch a glass jar of jelly out of the grocery cart and everyone would stop and stare at us like we were circus freaks begging for money on the corner of 5th and Main.
He eventually came to appreciate the fact that Brandon's humming, while mind-numbingly irritating, not to mention horribly embarrassing in public, did serve a purpose if we ever got lost in, you guessed it, Wal-Mart. We all knew to just follow the noise.
With the corruption of my poor husband came his sense of humor that I'm now sometimes jealous of. This man who was so serious, so proper, so reserved, was actually heard saying when we pulled up in yet another church parking lot to eventually not feel welcomed at -- "If someone says Good Morning to me, I think I'll punch them in the face!" This during a time when our son with autism refused to sit in a car seat and when made to would scream the entire way to wherever. During those years we lived one wrong look away from jail. Honestly, looking back, if we hadn't been corrupted into gaining a sense of humor and a deeper love of Christ, both at the same time, we wouldn't have survived. Our marriage sure wouldn't have. Who had money for marriage counseling? Who had time to read a marriage book? We had to learn to do things the old-fashioned way -- by digging deeper and dealing with it and not running away. By Hard Work. By Faith. By Prayer.
Recently my husband made me laugh so hard I thought I was going to die. He had just gotten out of the shower and was drying his hair. He paused. Brought the towel to his nose and smelled it. Sure enough, Brandon had somehow peed on it and he had just dried his hair with it. Now you know you've been totally corrupted when you don't immediately jump and freak out like normal people would. No... not my husband. Well, not my new and improved corrupted husband. He paused another moment. When I asked him about why the pause, he said he was trying to decide if it was a recoverable incident, or a non-recoverable incident. When he explained that, I just exploded in laughter. I mean some aerobic, calorie-burning get the ben-gay out for the muscle strain laughter. To him, a recoverable incident would just be where he can wipe pee or poop off his hands or something and go on. A non-recoverable incident would be something that you couldn't. Like having to get back in the shower so your hair doesn't smell like pee all day.
Hence the newly coined term in our house, "Well, that was non-recoverable!"
Ahhhh, I'm so proud of my husband. I've done him good over the years. Life with Autism is teaching him well.
And speaking of dying laughing... We even have our gravestones planned out. That's how corrupted we are. All of us.
All four of us will be in a row... I, being the Queen Corrupter of the House, will be first with my Gravestone reading: "Finally, no more poop!" Todd will be next with his Gravestone reading: "Well, that was Non-Recoverable!" Matt will be next with what he always says after a "Non-Recoverable": "You just can't make this stuff up!" And Brandon, our dear sweet Brandon who has corrupted us all so very much in the very best of ways, -- his will read: "And everyone always thought I was the weird one..."
Yes, I am very proud of how each of us has changed, has evolved, has learned to embrace life and enjoy it to its fullest despite all the things that try to empty it of happiness.
I'm proud of the ways the good crazy in me has rubbed off on him, and how the good sane in him has tried to rub off on me. Though I think I've fared better in corrupting him. One day when I received a copy of a magazine one of my stories was published in, with a serious look on my face I handed it to him telling him he should share it at the meeting he was going to at church. He looked at it, then looked at me, rolled his eyes and said, "You do realize I'm a Deacon, don't you?" I laughed so hard. I just couldn't help myself. The magazine was the "Brimstone Bulletin". I had been published in "Mother's from Hell".
I know. I am bad. And my husband is so very good. And so very corrupted. Where once he was mortified by my antics, he now says, "Give me the list of churches, time to move to another one after that...."
Why... I bet one day at work he'll even be brave enough to say to someone bragging about their kids triple-play or winning home run on the state playoff game, "Well, my kid can out poop your kid!"
And then walk off smiling.
Ahhh, it's a dog eat dog world out there...
And I'm so glad we're Guppy's.
Choosing Happy. Living Joyfully. Following Christ. Wearing Camo.
P.S. -- when I asked Todd for his permission to share this, he shook his head as a man knowing he had no choice, and replied: "You shouldn't be allowed on the internet!"
Ha ha ha .... I love you Todd! So very, very much...
October 21, 2011
This is Tonya.
She's awesome. She's real. She's really quite amazing for a biker chic. That's what I first thought of her when I very first met her. Er, judged her. I mean really, what kind of clue would a single mom of five children have? Surely no clue at all. How wrong I was. She is one of the most amazingly clueful people I know. And not only her, but her kids as well. They're almost as amazing as she is. Almost. I now belovingly call Tonya my "BBC" - Best Biker Chic. Her photogenic qualities are phenomenal. I mean really, look at that picture. Who could pull off a face like that and have it still reflect her beauty? Ahhh, I love her. When "Life with Autism" gets....weird, bizarre, too much, I just look at that picture and it shows the "WTH" that I feel, and then I feel better, and then I laugh hysterically.
Yep, that's a true best friend. One who has an expression just for you. One who brings a Girl's Night Out to your house when she knows you need a night of laughter and lunacy - topped off with some Punkin-Pie-Chunkin to her surprise, and pumpkin pie in her face demise! (smile)
One who knows I lovingly call her my biker chic friend and who when at a parade saw some actual biker chic's, and asked if she could have a picture taken with them!
One who unknowingly to me, came into my house when I wasn't home, stole my Pumpkin Tree, put it in her house, then took a picture of it in her house standing beside it, and put it as her facebook profile picture the next day. Where the next day when I sat down at my computer and saw her profile picture, I noticed the pumpkin tree. I thought to myself, "How nice that she finally got herself a Pumpkin Tree - I knew my trend would catch on!" Then the more I looked at the Pumpkin Tree, the more familiar it looked. "Naaaaaa... it couldn't be!" So I went downstairs where my Pumpkin Tree is - er was - and noticed.... nothing. My Pumpkin Tree was gone. I'd been punked by that sneaky, sneaky, biker chic punk! (smile)
But that's ok. See this picture below? That's the picture that was on my facebook wall after a ninja stalker visit to her house when she wasn't home. That's my house. My dining room. And my dining room table and Christmas plates. And all of her beloved Gingerbread Men seated around it. Eating Ginger Snaps.
This below picture was her Fall Family Picture - featuring my Pumpkin Tree:
And this below picture was my "Christmas Family Picture" featuring all her Gingerbread men and me wearing her apron and her elf hat that I snatched as well:
Ahhh... everyone needs to laugh. Everyone needs someone who will make them laugh. Life is way too hard and way too serious to not have some levity. Some laughter. Some lunacy. Everyone needs to be a friend who will steal a pumpkin tree from you. Who will hold your Gingerbread Men hostage and demand a ransom for their safe, crumb-free return.
Everyone needs a friend that is rock solid as a Christian, but yet down right crazy as friend.
Who is true to herself, who is herself, and who is a sailboat encouraging you to be yourself, instead of an anchor weighing you down because of all you are not or never will be.
A friend who is stark raving mad crazy fun.
A friend who is bonkers.
A friend like Tonya.
And just like in the movie "Alice in Wonderland" - all the very best people are just that.
Thank you Tonya.
I know this is early, but you know how my life goes.
It's do this now while I'm thinking about it or I'll forget that I wanted to do it!
October 19, 2011
Life with Autism - our "other son" Matt
Ok, so in this picture is my son, Matt. I was in my office minding my own business, and the picture shows what suddenly popped in from around my office door, scaring me about as much as the empty water bottle with a fire cracker in it that he rolled in my office a few weeks prior! Always a few more gray hairs popping up with this boy!
This boy who has "The Chronicles of Guppy: Parts 1-5" on a special shelf in the AP's office in Middle School. Not ever anything "bad" - just typical "Mischievous-Matt."
This teenager who despite all he went through in High School and friend betrayal and all the typical drama of High School life - still managed to stay true, stay focused on what mattered, and had a heck of a fun time doing it!
I credit Brandon with that. Because of him, because of our family's "Life with Autism," Matt matured faster than others his age. Not in an arrogant or better-than-you way, but in a "what really matters in life" kind of way. As a family we've struggled more, laughed more, cried more, endured more, - and thrived more. Because of all that, he has the mentality to do more. Be more. Achieve more.
This man who the Navy will be getting one day soon. Except if they see this picture.... ha ha ha. But in all reality, this picture is Matt. He is rock solid, not only book smart, but more importantly, life smart. He can figure out anything. He can get through anything. He knows how to laugh at anything and is embarrassed by nothing.
This son of mine who is serious in his attempt to be a ninja-stalking-scuba-mask-wearing-Navy man, but yet not so serious that he can't be silly and scare the s-poop out of his mother!
His mother who is so very proud of him, yet in a humbling way. In knowing that even with all my imperfections as his mother, - God has been perfect in protecting him, guiding him, giving him gifts that he has used well in Glorifying Him.
His mother who needs to learn to lock her office door when Matt's home!
Nah... what fun would that be?
October 18, 2011
Life with Autism -- in pictures...
This is my son Brandon. It had been two weeks since his last Grand Mal Seizure. But today, the day after I was bragging about that "seizure-free" factoid on Facebook, -- he had a hard seizure. It took three of us at school to get him in my van, and it took my neighbor and I to get him out of my van once home and into my bed. (Note to Self: Always be prepared when your male neighbor may have to help you carry your son in your bedroom by putting your bra's away and not leaving them on the bed)
Brandon and I laid there side by side, just chilling together for a couple hours. He just likes someone close.... Hence my love for Country Music now. For the past fourteen months, Brandon and I have spent a lot of time chilling together on the bed, watching the Country Music channel...
Then, after a couple hours of that, he wanted to get up. It was the first beautiful day in Houston since March, so we went in the backyard. Brandon's favorite thing to do is jump on the trampoline. He knew he couldn't jump, he was still weak, but he loves his trampoline. So he just sat there in the breeze, in the sun, content. He didn't need to jump to be content, he just needed to be where he loved to be.
As I took pictures of his sweet serenity, I couldn't help but marvel at that. All my plans for the day were derailed. Yet again. The first chilly morning in forever when I could walk and not sweat on the Nature Trails, I didn't even get to go enjoy it! Matt had truck issues I had to help him with. Then when I was done with that, I got a call from Brandon's school about the seizure.
A mosquito buzzed into my world, and I dared to let that irritate me.
My sweet son suffered yet another seizure that rendered him unable to jump on his beloved trampoline, yet he still found contentment in just sitting there.
Oh how I love you my Brandon...
How for someone completely non-verbal, you say so very, very much.
September 28, 2011
This is to you.
You, who are physicians, administrators, board members, etc -- of any hospital in the medical center of downtown Houston. You, who have abandoned a population you have never really thought of of the box long enough to properly serve. You, who have the finest medical equipment, the sharpest medical minds. You, who have used all that talent and technology to do what for the autism population of Houston?
And what's worse, you have let the only someone who was actually do something, leave to do it somewhere else, to benefit some other epidemic autism population in some other state.
Shame, shame, shame on you for not listening to parents who come to you begging you to help, to listen to them. Shame on you for seeing the evidence before you but choosing to ignore it in the face of being "politically correct" or possibly losing pharmaceutical funding or getting "spanked" by the AAdonothingfor autismP. Shame on you for putting your need to stay stuffed in your outdated comfortable box, before the needs of children you are doing harm to because of your lack of willingness to think outside that box.
I'm talking to you Texas Children's Hospital, where for a decade I brought my autistic son who had severe, chronic diarrhea, looked like he was a malnourished child from a concentration camp, and you did nothing but say "it's autism". Only one GI doctor in all those years dared do an Endoscopy, and when the biopsy results showed inflammation, it was written off as "nothing". No treatment. But when we finally got tired of hearing "nothing" yet seeing something very chronic and wrong in our son's leaky gut - we went to a specialist who knew about GI disease in children with autism - and he properly performed an Endoscopy and Colonoscopy, where very real medical diseases were found, and treated our son. Where in over a decade we got no treatment from a medical center thirty minutes from our home, we received treatment from a specialist who lives in New York. Within two years of that proper treatment our son gained weight, stopped having chronic diarrhea, and was happy, healthy, nourished. Finally to keep from not having to travel to see that specialist, one brave GI doctor would at least consult with this specialist. But I'm sure if word of that gets out, that person will be run off too. We wouldn't want to get caught properly diagnosing or treating bowel disease in children with autism. People might think we support Andrew Wakefield. The champion of uncovering GI Disease in Autism so it could be treated!
I'm talking to you in the Blue Bird Clinic for Child Neurology who seem to think the only treatment advice to give a parent of a child with autism and relentless seizures, is more medicine. Not once has anyone in that Blue Bird Clinic come to me with any latest research on autism and seizures. On kids with autism who have underlying viral issues that could lead to seizures. Not once, not with any neurologist have they been proactive. I have sent them research abstracts, I have begged them to do scans, do metabolic tests. Only one Neurologist in all those years actually knew about autism and some of the things, tests, that could be explored to help our son. And what a surprise that he quickly left and went back East where he came from. Leaving children and their parents abandoned, yet again.
And I'm talking to you in the Autism Clinic where Dr. Richard Frye worked.
Let's talk about what a stunning blow to the autism community his departure is and will be for a long while. Well, if I could come up with something worse than stunning blow that is. Devastated, Crushed, Abandoned. Those are words that somewhat describe our loss. Dr. Frye was the best hope a parent of a child with autism had. He attended autism conferences, he studied the abstracts from autism researchers. He understood that behaviors, GI issues, seizures, anything -- is SOMETHING, and not "just autism" where the only treatment is drug after drug after drug. He understood the biological complexities of autism. He understood there was a cause of behaviors. He understood how many body systems needed to be addressed with autism. He TREATED autism. He didn't just drug it. Whoever's brilliant idea it was to allow him to leave so he could start in another state, in another Children's Hospital, what OUR Children's Hospitals need, is beyond insanity.
Whoever didn't beg him to stay so he could do what he knew needed to be done here, is too stupid about autism to know how stupid they were in not begging him to stay here and start that multi-disciplinary clinic here.
Here, in Houston. In EACH Medical Center we have. HOUSTON needs a multi-disciplinary autism treatment center.
I don't care how many degrees you have or how many fancy initials trail after your name, if you are part of the autism center where Dr. Frye worked and allowed him to leave, you are an idiot, and you are responsible for the abandonment of all the children that man has helped. Would have helped.
Dr. Frye is the only physician in this town who has truly diagnosed and performed tests to help determine my son's exact issues, what is causing his behaviors, his seizures.
He has given so many, so much hope.
Where we had one person in that medical center to go to, we now have no one.
To understand this crisis called autism, this epidemic of autism that goes untreated with each tick of the clock, is to know that you need to get the hell out of your comfort zone and listen to the parents about what they need. You must listen to the doctors who take the time to research autism. And you must allow them to do what needs to be done!
Not cower or cringe at where the research leads. At how "unconventional" the treatment must seem. Autism is unconventional. Autism is new, the treatments for it not learned in medical school or outlined in any medical text book.
It will take forward thinking physicians who are dedicated and determined to think independently of the Pharma-industry and the AAP's closed-mindedness. It will take forward thinking physicians to attend the medical conferences on autism. It will take of all physicians the willingness to read the independent research and come to their own independent conclusions.
And until you, the Houston Medical Center, "Get Dat", you will over and over, "Blow Dat" in treating children with autism. Oh, you'll get better and better at being drug-pushers, but make no mistake, that's not treating a child with autism. That's simply another form of abandoning a child with autism.
Houston, we have an autism epidemic problem. And you let our best chance of a solution, of help, of effective treatment, move to Arkansas.
You.Blew.Dat --- big time.
And now the abandoned children who have autism must pay that price.
It's a good thing I have family in Arkansas....
Michelle M. Guppy
(Parents reading this, if your child was a patient of Dr. Frye's, please contact me by e-mail!!!!)
September 26, 2011
Some days autism gets to me.
Like this picture for example. It was taken yesterday, a Sunday, in the early afternoon. This picture bothers me for three reasons: 1) Brandon is seventeen years old, 2) Seventeen year-old boys should not be in bed on a Sunday early afternoon, and 3) We should be just getting back from church, we should be about to have a nice Sunday meal together talking about church, the week ahead, and so on.
But no, it's not often, if ever like that with "our kind" of life with autism. Brandon was found that morning under his bed jerking & twitching. We didn't get to go to church. He was in and out of bed the rest of the afternoon, barely eating, let alone sitting down for a family meal. Some days those horrors outweigh any heavenliness of how peaceful and Angelic he looks laying there with his hands tucked under his head just so. Just laying there. Not sleeping, just laying there. Not talking, not humming, not laughing, not crying. Just being. I don't know what he's thinking. I don't know what he might want. I don't know if he's sick or if he's hurting. I'm his mother. I gave birth to him, I nurtured him, I've done everything a mother knows to do for him. I've cared for him, I've spoken for him, I've fought for him. Hell, I've even traveled all the way to Washington, D.C. to attend rallies for him. Yet on days like today, I feel I don't know a thing about him.
Yet on days like today, even though I know I've spent every last dime I've had in doing everything I possibly could to help him, when I see him laying there like that, despite all I know I've done for him, I feel I've done nothing for him.
I wonder if any mother outside of my autism circle can comprehend what all that means. I doubt it. I barely comprehend it. But each day I must face it. Survive it. Thrive despite it.
And I do. We do. How? Hopeism.
That's a word I use a lot. A word I first heard from National Autism Association in their campaigns. Where every other group was making a business and comfy living in the name of speaking for and being the voice of autism - this group, NAA, they were actually doing what no one else was.
Helping. Giving Hopeism.
That word that didn't seem to exist when my son was diagnosed fifteen years ago. Armed with a new diagnosis of Autism, I was so naive about autism that I thought knowing a name for what my son had, was the cure. That all would be better because there would be treatments for it. Little did I know that innocent-enough word would have a lifetime of searching, struggling, isolation, discrimination, advocating, attached to it.
But even though I didn't know that word, I guess hopeism to me was just making it through another day, taking another breath.
Hopeism eventually got easier. It became not taking "it's just autism" for an answer about anything biological that was wrong with my son... be it diarrhea, seizures, behaviors, etc. It was the raw determination to find the doctor who would think outside the box. It was spending hours upon hours on the internet reading medical abstracts until I could graph blindfolded any metabolic pathway or cycle and win any medical terminology spelling bee despite never having been to medical school.
Though all the autism battles I've since fought, I've learned that while hopeism doesn't always win, it never, ever loses.
In the myriad of unsure things about autism, for that I'm sure.
Victory has been given a new meaning. Accomplishment a new look. Ones worth, a totally new concept.
Hopeism for many of my friends has meant a cure. The removal of that autism mask that their child has worn for so long to where they can now live and work independently. Hopeism for me has not meant a cure, but rather a progression of improvement in all the ways he is affected by autism, to where while he will always need supervision and direct care, he will be happy. He will still be making progress to reach the highest level of independence and potential he can. Hopeism for others lies somewhere in between.
Through the abundance of good days in life with autism, hopeism is simply hope. That faith, that belief, that all things happen for a reason. That love for our child that spurs us on, that fierce desire we have as parents to do more so they can achieve more. That joy that comes in our life and overshadows any hardship and obstacles our children must endure, that enriches us, grounds us, and betters us.
And on the days, weeks, months, -- for us this past year, that my own son has been going through trial after trial, laying in bed on a Sunday when he should be jumping on the trampoline, -- and people ask how I get through it; I reply that hopeism is sometimes simply hanging on to the hope that there is hope.
That things will get better. That prayers will be answered. And even when things don't get better and prayers aren't immediately answered, it's still hanging on to the hope that they will.
Hopeism is saying we'll try again tomorrow.
It's praying one more prayer.
Hopeism is never saying never.
It's never quitting.
Hopeism is my faith, my family, my friends.
It's all the positives that get me through all the negatives.
Hopeism is my Lord & Savior Jesus Christ.
It's my Brandon.
Michelle M. Guppy
September 19, 2011
Well, actually the stupid things people say, for a brief moment there I attempted to be politically correct.
I think it was my friend and her e-mail to me a week or so ago that got my mind on that train of thought. She shared with me how she struggles with how to handle when parents compare degree of difficulty in a child with a disability. Things like, "You don't know how hard my son with autism is to handle, your son with autism is much higher functioning..."
And all the false assumptions that go with that....about how "easy" it is if your child can talk. About how "easy" it is if your child can listen to you. About how "easy" their life as an adult will be.
I've even fallen victim to that mindset. I had a friend whose son needed to be in a wheelchair. She would always say Brandon was welcome to parties held for the holidays, and I was always thinking to myself, "Easy for you to say, your son won't be up and running around knocking over everyone's drinks and stealing their food..."
What an asshole'ish thing to think. Let alone say to someone.
Yet I thought it, and at times to others, said it.
I would imagine I'm not alone.
We've all done that in one form or another.
That's the bad thing about autism. It's such a spectrum with so many degree's of how the child, youth, or adult is affected that you cannot possibly cover all bases with one story or one aspect. You will never portray all it is with one generalization.
But yet we try.
A one-size autism awareness campaign will most definitely not fit all.
Pitting one degree of difficulty against another will most definitely not accomplish anything at all.
While I'm not going to party's because all my son would be doing is running all over the place, someone else has their son at a party in a wheelchair wishing he could run all over the place.
While my son is in a self-contained classroom oblivious to what his typical peers are thinking of him, there are other mother's sons who are higher-functioning in that typical classroom with those typical peers who are teasing him, taunting him, and bullying him, -- and he very much knows it.
Someone would dare compare and say one of those students are "luckier" than the other? I think not.
While my son will need constant supervision and guardianship so that he won't be taken advantage of; my friend's sons will be able to live pretty independently, yet open season to predator's who would take advantage of them sexually, criminally, or financially.
Someone would dare to think, let alone say that one of those mother's are "luckier" than the other? I think not.
While there is a common thread of "knowing" about each of our separate, yet equally challenging lives, when it comes to the autism melting pot we all together live in --- we best recognize that we cannot ever speak for any one of us individually and think we're speaking for all.
So to compare your child, your situation, with anyone else's, saying yours is better or worse than theirs, is irresponsible and demeaning.
You're not comparing apples to oranges...
You're comparing hell to hell.
Where both leave a parent with third-degree burns.
September 16, 2011
Tough advocacy issues to battle, tough prayers to pray, tough medical issues to sort through, and tough times to tackle. It sometimes seems too tough for even a tough warrior mom like myself to face.
But I must.
We must persevere, saving the pity-party for another day when there's time for it. And though many may view this as my pity party - it's not. We would do ourselves an injustice to not acknowledge when we're overwhelmed. We portray ourselves as anything but human when we only share the "Don't Worry Be Happy" stuff. Acknowledging the "other" stuff is how we sometimes cope. Not how we complain.
My son Brandon is seventeen years old. Born a happy, healthy child. Apgars 10 and 10. In newborn terms, that means perfect.
Now, today, he is vaccine damaged. Where he did have words as a toddler, he now has none.
Where he was once "a healthy newborn," his formal diagnoses over the years have become words like "non-verbal", "cognitively impaired", "autistic".
As if those weren't enough, after years of chronic diarrhea that the Children's Hospital where I live dismissed as nothing but "autism" -- I finally found a Pediatric Gastroenterology Specialist, from New York - (I live in Houston) - who properly evaluated him, properly scoped him, and properly diagnosed him with words like "colitis" and "inflammatory bowel disease". Real medical words that have very real medical treatments. It was that physician who first gave us new words to add to our vocabulary. Words like "proper diagnosis", "proper treatment", "hope", and the "promise" that in two years time if we did the diet other doctors said was not valid, we would see "healing".
From words we became all too familiar with over the years in the "broken trust"of vaccine policy, politicians who "sell out" to the highest contributor, and pediatricians who "refuse" to see autism as a biological disorder and not merely a mental one, - we could once again let out a breath of relief in savoring words like "promise kept," "integrity," and "truth," in the doctors/researchers who vowed to help my son no matter what the personal cost.
Other words I must experience daily are "atonic seizures," "myoclonic seizures," and "grand-mal seizures." But even among those thousands of seizures he's had over the years, one word has faithfully countered them, defeated them.
God has been the antidote to any and all insults to injury my son has experienced. And he's experienced a lot of them in his sweet, innocent, life. And as much as people like Brian Deer spread lies about how we parents as well as Dr. Wakefield are "wacko," - I will just as passionately share how God is so very true, so very sovereign, so very loving. So very much the only one who gets our family through this "Life with Autism."
In this "autism world" where "medical centers" designed to help instead practice prescription drug dealing more than medicine, and therefore, don't help, us parents have always had at least one person, one clinic, who did help that we could turn to. That is changing. Where "autism centers" that were designed specifically to address the growing epidemic of children with autism once helped, they don't anymore. Now, they only address autism issues to the point their pharma-funders allow. Any brave, courageous, actually-knowledgeable-about-autism physician who dares to actually think outside the box and who actually help uncover a biological basis and medical treatment -- is run off because "there is just no evidence that what they are doing or thinking is valid." It doesn't matter that many children are helped, treated, healed, or dare we say cured, in the process, --- that doesn't matter if someone doesn't like the "process".
Or where that process leads...
Which is were I find myself. Living thirty minutes from three major hospitals, two of them with Children's Hospital's as a specialty. All staffed with the world's bestest and brightest, -- yet I am abandoned. My son abandoned. As an autism advocate who gets dozens of calls or e-mails weekly from parents, parents who ask where to take their child, -- I have no one. No one to refer them to. Even though again, I live thirty minutes from three major Hospitals.
Autism Speaks, where are you in this? Where are your millions that you take from parents who desperately need help and who give you their last dime? Who walk for you, fundraise for you.... turn to you? Where are your offices in each medical center in each state, instead of an uptown office in New York?
Abandoned. That word again. That word that in every Children's Hospital when it comes to their "Autism Clinics" needs to be replaced with "help," "hope," "healing."
That word that is trumped instead in those very Medical Centers, by "cowardice," "money," "politics."
Some days things like that are just too much. Too many children wandering away and drowning because of autism. Too many deaths due to autism, too many divorces due to autism, too much corruption in organizations claiming to speak for those with autism, too many great physicians run off for defying the definition of autism, and too many dadblasted defeats in fighting autism.
But words like "found alive" balance it. And I must cling to that. For every ten Billy's, Bobby's, Michael's, and Matthew's who have wandered off and were found dead in a pool, pond, or river, -- there is a Joshua Robb who was found. Alive.
For every defeat there is a victory.
For every bit of bad news, there is good news.
For every idiotic Pat Robertson pseudo-Christian leader who says it's "Ok" to divorce a spouse who has a disease or disorder or injury that renders them "like a kind of death" --- there is a Joni Erickson Tada whose own marriage assures us of God's Grace, Blessings, and Purpose in sticking with those vows of "for better or for worse". Until "death" do us part. Not until "something like a death" becomes a burden and I'm off the hook.
For every satan's-spawn Paul "Pharma-Proffit" Offit who comes to town for a martini-mixer sponsored by a medical center, there is a group, no matter how small, of warrior moms who will not let that go unnoticed and unchallenged.
When it seems we're losing the battle of autism on all fronts, I must remember these things. That we only truly lose when we stop. That we're not weakened by admitting that our obstacles are heavy, but rather strengthened in allowing others to bear that load with us, if only through prayer.
All summer we've been going through yet another insult to Brandon's vaccine injuries. He had some tests done in seeking to find answers for the relentless seizures, and the results were not good. They didn't indicate anything to shed any light on the seizures, but instead, gave us a new diagnosis to deal with. A degenerative movement disorder that has no real treatment or cure. There are risky medicines to give that might slow progression, but nothing to stop it. But since he's been undiagnosed for so long, the very medication that could slow the progression, could actually cause it to speed up. If I wasn't already stark raving mad at just plain ol' autism, that might have tipped the scale in my sanity being non-recoverable. And while I should be crying at that, I can do nothing but laugh hysterically at the 12 vials of blood so far taken for the different genetic tests being done to figure out what caused that damage. I know why. The multiple vaccinations given while he was sick and on antibiotics damaged his basal ganglia, the part of Brandon's brain that is damaged according to these results. But yet everywhere around me are words like "vaccines are safe," "there is no evidence".
My son is evidence.
My son is the "Canary in the Coalmine" of vaccine policy gone wrong.
And I'll not hide that fact or run from that fact simply because those who caused that fact, are too cowardly to face those facts.
And on the days like lately when that, along with everything else our family is going through, - seems too much, I'll remember the hopeism we all felt when we read about how little Joshua Robb was found.
And out of the past ten or so news reports I've read this year about kids with autism wandering away and found dead, that one boy found alive is all the hope I need to balance what vaccine injury has taken from my son, with all the very good that God has given not only my son and my family, but all those whose lives have been touched by this angel with autism of mine.
I can be mad and hurt and betrayed all over again with this new medical blow my son who already has so very much to deal with, must deal with; - and I could allow it to render me hopeless, but I won't. I will not allow satan's slams to stop me from shouting to my Savior to save my son yet again.
That's simply not what autism moms or dads do.
When our kids or our kids health wander away, we search.
No matter how far. No matter how long. No matter what obstacle.
We search until we find them.
We fight until we recover them.
We never quit.
~ ~ ~
... and much like how so very many children with autism wander off and die, so too it seems has the truth behind the Pharmaceutical/Vaccine industry, the CDC, and our Government in acknowledging the blatant facts before them.
I promise you this Brandon. While you have been injured by vaccine policy gone wrong, I will not allow you to be insulted any longer by their lies and denial.
I will stand for you.
I will speak for you.
I will join others in the Canary Party to share the truth for you.
And the only thing that will drown and die, is the lies of the pathetic profiteering of Pharma.
September 7, 2011
This is a picture I took with my camera phone standing in the street in front of my house. There are wildfires burning around us, and though we are not in any immediate danger, we can still see and smell the smoke from those areas that are in danger.
I've felt hurt by some things lately, today. And for a fraction of an instant it seems, I let those trivial, humanly emotions allow satan to whisper what a fool I am, was, and no doubt will be again. I allowed myself to hear those evil whispers telling me I'll never measure up. I'll always be misunderstood. But then this picture was painted right there in front of my house as the "voice of truth" reminding me just the opposite. Of God's glory, and how it shines through any darkness, through any smoky, cloudy, haze. Through any trial, complication, bad news, betrayal, blazing fires or billowing smoke. Reminding me that God's Faith, Hope, and Love roars. And if we would allow it to, it will roar so loud that it drowns out satan's whispers before you ever have to hear them.
It reminds me of lyrics from the song by Casting Crowns, "The Voice of Truth".
But the waves are calling out my name
And they laugh at me
Reminding me of all the times
I've tried before and failed
The waves they keep on telling me
Time and time again. "Boy, you'll never win!"
"You'll never win!"
But the voice of truth tells me a different story
The voice of truth says, "Do not be afraid!"
The voice of truth says, "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth
And as this day ends and I look at this picture, listen to that song, and type these words, I know these things for certain:
I will make mistakes.
I will be misunderstood.
I will feel mocked.
But above all, I will always be captivated, amazed, and majestically mesmerized by my Messiah and how His Mercy and crazy love for me has always shone through any malady or mess up I have faced.
And in the end, that is all that really matters...that's all that has ever mattered.
Choosing to listen and believe the voice of truth,
Click here to listen to "The Voice of Truth" by Casting Crowns
August 29, 2011
In the early years of having one son who was diagnosed with autism, and a typical son only eighteen months older, I really talked to God.
Things like, "Lord, Really? You're killing me. One son you give me cannot talk. I've spent a fortune on therapy to try and get him to talk. I've begged him, pleaded with him, and bribed him to talk. But he won't talk. One son you give me will not shut up. I've begged him, pleaded with him, and bribed him to stop talking for just a few seconds to allow my ears to rest. But he won't stop talking.... Could you just share. Divide up the language between them both?" I think it was during that period of time when I realized God must have a sense of humor, and when my own sense of humor took a turn for the bizarre. But hey, laughing about it was better than alcohol, drugs, or smoking!
One son I had to start in school when he was three years old so that he might have a chance at adulthood. The other son I waited as long as possible to start school, until he was six years old, so he would have more time to be a child.
One son failed IQ test after IQ test in assessing his disabilities. The other son's scores through the roof on IQ test after IQ test in assessing his abilities.
One son had IEP's having to do with 'manding'. Which means he had to make a sound, any sound, to get a desired item. The other son had a behavior contract where he would be rewarded for only talking out loud 3 times out of every 15 minute period.
And so the extremes began. Both sons so very, very different. Both sons so very, very much loved.
One son the moon -- quiet, serene, gentle. Humbly being that light in the darkness that is autism. The other son the sun -- bright, shining, rambunctious. Joyfully being the laughter in the lunacy that would be our life.
One needing to be protected. The other, the protector.
It's been an emotional roller-coaster ride being the mom of both boys, that is one thing in this unsure world, that I am most sure of. And over the years I thought I had experienced every extreme emotion a mommy could. It's been a decade now of autism and all the ups and downs, twists and turns, joys and sorrows, tears and laughter that goes with that. And my oldest son, the "other" child as he is called because the child with autism consumes parenthood, -- has just graduated High School.
It's been a whirlwind. I've seen it all and I've been through it all.
Or so I thought.
The events of late have me revisiting that in contemplating which is harder as a mom. Having a child who does not know how to dream and therefore will never experience a dream being shattered, or having a child who does know how to dream, and him having that dream shattered?
Once again back to God in that never-ending conversation we've had over the years, in that once again I am experiencing such extremes in my children..... Which is harder? Not being able to dream, or being able to and having them crushed?
All hopeism aside for a moment -- knowing that the son with autism had that part of his life stolen by the very autism that consumes him at times. In that he's never played make-believe. Never had an imaginary friend. Has never shared his hopes and dreams with me. I'm not sure he knows what dreams are or what the future means. I know how stark raving mad that makes me feel inside. I know the pain of how that sword pierces my soul at times. But at least I know that he doesn't feel that. He can't mourn the loss of a dream he never had in the first place. To him, this day, this moment, is his dream. There is nothing more pleasurable than the moment he lives in. There is no anticipation of tomorrow, there is no regret of yesterday. For him, there is only the right here and right now. Any pain is only in this moment, any anger is only in this moment, any laughter is only in this moment. And then gone in the next moment. The heartbreak of him never having his heartbroken by a girl will only be mine. The heartbreak of him never getting to be something every fiber of his soul longs to be when he grows up, will only be mine.
I fear the possible day my other son has his heartbroken by something or someone. I've been grieving for my other son who might possibly have his dream crushed by something out of his control.
It's that cross-roads where you look both ways and think not knowing is better than knowing. I guess that's why God doesn't always reveal things to us. We just couldn't handle it I don't think. I know I couldn't. I can't.
All I can do is bump up my humor a notch to cope with those questions. Those extreme heartaches for my extreme children. And I must bump up my conversations with God, aka, my prayers. They need to be as extreme as my situation often is.
I just wish I had extreme patience to go with it all. But until that time, I'll have to settle for having extreme faith. Extreme hopeism. Extreme love for these two boys and the Savior who blessed me with them for a season, a reason and for a purpose.
And extreme thankfulness for the husband who has stood by and comforted me through the madness of my extreme mommy-hood.
August 25, 2011
Yes, this is Michelle being her perhaps to some, not so humorous self. But it's how I cope with things. How I help sort them out in my mind. How I not go mad in dealing with the maddening.
So back to my sin scanner. I think all churches should have one. It would make things much easier on those who want to serve, who have served, then find they're asked not to serve anymore because of some "sin" that has been scanned by some obvious "not-ever-have-sinned" sinner themselves.
While I have to put my spin of humor on this story, it is based on a true story shared to me by the person this happened to. No, not gonna say who. And no, not gonna say what church. And no, not gonna entertain speculation about who was right or wrong. I'm just going to say this is one of the many issues that keep sinners hesitant to go to churches for fear of them being judged by their sin. Oh, we may say we accept them, but we make them wear a scarlet letter so we can identify them, the sinners, from us, the apparent non-sinners. Or them the "really bad" sinners, from us, the "not so bad" sinners.
This person is a Christian who has made mistakes. To that end there is no doubt. But I've not personally seen God's hierarchy of sin to know where their particular sin falls, and yet I know it's not anywhere close to child abuse or murder. What I would consider the big 'en's on that nonexistant list. Either way, this person went to a Ministry meeting for this particular gender and opened their heart about their sin. Fully exposed themselves. Fully shared their sin and how they struggle with it. Not for any other purpose but to seek support. Encouragement. Accountability in overcoming that. And what this person thought, to actually maybe start a support Ministry for this particular struggle for this particular gender. After all, surely they're not the only one. Above all, they're most certainly not.
What this person got, was asked not to serve where they were serving because someone took one sin - and immediately blew it out of proportion to sins it never had anything whatsoever to do with. No, this person didn't get continued encouragement for having the guts it took to stand in front of a bunch of people and admit their sin. They didn't get encouraged to serve elsewhere, just asked not to serve because of someone's rampant imagination.
Wow. Talk about being crushed by the very place crushed people are supposed to go to get uncrushed! To find unconditional love. To find acceptance of them as a person.
At first I was angry. Then just sad. Then I laughed. And began thinking about inventing my sin scanner for churches. It would be just like a metal detector or body scanner in an airport. When the doors of church open on Sunday, it would be right there for everyone to walk through. The church could have it programmed for their list of sins they won't allow or accept - and when that person walks through meeting that criteria, flashing red lights go off along with an alarm and the bouncers would descend upon them like Baptists at a pot luck and escort them out. I guess to perhaps come back another time when they are less a sinner. Or when sufficient time has passed for us to not be embarrassed by their sin. Who knows.
We would have one for each Ministry too, and the criteria of sins you can't have to serve in that Ministry would be programmed in. I mean really. Not everyone wears their sin on the outside, and not everyone would be honest on any pre-screening sin-questionairre. But we have to know... We have to scan those sins that folks keep hidden! You've looked at porno? Well of course that means you could be a child molester and so the sin scanner will sound so we don't let you work anywhere near children. You stole a piece of gum as a child? Well, then the sin scanner will go off anytime you enter the church office or want to be an usher passing the offering plate. You had an abortion as a young teen? Yep, we've programmed our sin scanner to detect that so that even though you are a forgiven Christian now, your past sin might still smear onto our youth. You're divorced or an unwed mother and want to sing in the choir? No, we've found that only married people can truly make a joyful noise unto the Lord. No matter that often the most heartfelt songs are written by the most broken or the purest melodies sung by the most unpure. I would want one for each Adult Sunday School leader as well. I mean really, I wouldn't want a lustful leader who has ever had the human reaction of thinking momentarily "He looks good in those jeans" -- teaching a class with my hottie husband in it. So yep, "lustful thinking" would be programmed in that sin scanner as well. Doesn't matter that you've not committed adultery, but it starts with a thought you know... I wouldn't want a youth leader teaching youth moral principles if they've had premarital sex themselves. And oh my the scandal if we had one as Deacons enter a deacon meeting and anything on that "deacon to not do or have done" list had actually been done!
Many may think I'm going overboard with this, but am I? Do we not see that everywhere we go? In churches we've been in?
I know I've felt it whether it was intended or not. And I know I've used my own sin scanner to judge others as well. Maybe I'll donate mine to the church. I don't want it anymore. My dad-blasted son has called me on that a time or two. How dare he trample on my own self-righteousness so!
Rest assured, I'm not saying that we should let convicted child molesters serve in the Children's Ministry. That's where policies of background checks for volunteers come in. Let's start with that basic tool in judging others to see where they're fit to serve, or not serve. But for bloomin onion's sake, let's not immediately judge those who haven't even committed a crime. I mean really, do we as a church want to be in the business of judging one's sin, or in this case, taking one sin and relating it in our mind, in our judgement of their sin, to a level of sin it never was nor ever would be?
And I wonder, when we do that -- when we "scan" people's sin and judge them based on that -- what blessing are we missing? Who better to form bonds with men who are struggling with men issues - then the very men who have had to deal with and overcome those issues? How many teens can benefit from one teen's past mistake of pregnancy, or dare we allow them to admit, -- abortion? Who better to teach honesty than a thief who has found truth?
I wonder who is leading our Churches, our Ministries, or Sunday School classes now, who would not make it past that sin scanner? I know I wouldn't. I'm probably considered too radical. So I guess I should save myself the humiliation and just not ever volunteer to serve. I might corrupt people. But I wonder, if all it took was one radical woman who was an atheist to get prayer out of schools, what could be accomplished for the kingdom if we had 10 radical women on fire for the Lord, in the church, leading other women in how to get radical and thus help get God back?
I wonder who would be left to serve in our churches if we had such a scanner?
Who could ever hope to go through one without setting off the alarm?
I know who....
The very people most often shut out of churches.
Those with disabilities.
And that makes me laugh even harder.
That's more than a cliche' spin-off to me. It's been a very real lesson lately. In trust. In hope. In faith. In everything that as a Christian we must have, but often fall short and don't.
In simply "layin 'em down" when it comes to giving my prayers to God.
The lyrics to the song by that name go like this:
Come down to the river
Come and let yourself in
Make good on a promise
To never hurt again
If you're lost and lonely
You're Broken down
Bring all of your troubles
Come lay 'em down
All you sinners
And the weak at heart
All you helpless
On the boulevards
Wherever you are now
Whatever evil you've found
Bring all of your troubles
And come lay 'em down
We're all tied to the same old failing
Finding shelter in things we know
We're all dirty like corrupted small towns
We'll bring our troubles
We'll bring our troubles
Lay 'em down
All you rich men
And the high above
All of those with and without love
All you burdened broken down
Bring all of your troubles
Come lay 'em down
Singing that song often as I do, it seems so simple. Just lay em down. Pour your heart out to God, tell him the situation you are in, trust in Him to answer as only He can.
But it's not that easy. It's hard. To open our heart in that way, to tell God what it is we need to happen, and then to just let go. No, that would mean we have to totally trust. Totally surrender. Totally let go. And we are control freaks whether we admit it or not. If I just hold on to that by a pinky, I'll still have some control.... If I just sorta believe it won't hurt as bad if the answer isn't what I hoped.
We do that. Oh, we go to Him and "Lay em Down" all right, -- but we just don't ever walk away and "Leave 'em Be" or "Leave it to He".
We hold on as if our strength is greater than His and therefore don't let go.
We think we know better than He how we need the prayer to be answered and therefore don't totally trust.
We think surrender is a sign of weakness and therefore don't give God a chance to be in control of the situation.
We keep those thoughts and prayers to ourselves because we feel we'll be humiliated if we share the prayer request, it's not answered in the way we wanted, and then we're left feeling others think our faith wasn't great enough to warrant what we asked for, or our worth not high enough for answered prayer.
When really, it has nothing whatsoever to do with us. Not totally at least.
It's about God.
It's about what will bring HIM Glory.
It's about what HIS plan is for us.
That's the hardest part. I don't doubt God answers prayer. But I often doubt my ability to cope with that answer if it's not what I was expecting!
That's the lesson I'm learning lately. Fully trusting. Fully believing. What it really, truly means to "Lay the Prayer request down and walk away..." To not think about all the what if's... To not doubt. Not debate. Not have a panic attack. To not hang on just in case...
To just give it to God and walk away.