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.
February 26, 2018
I've been thinking about the "A Night to Shine" event a lot lately.
The Tim Tebow Foundation provides for an unforgettable prom night experience for thousands of individuals who have disabilities - and their volunteer escorts for the night who are the gracious and loving hands and feet of Jesus in making them feel like true Kings or Queens for a night.
I have seen many who I know participate in this and I've seen the pictures of pure joy on their faces in how much it meant to them, but at the same time, I found myself once again letting out the deep sigh of longing for something similar for those of us who have children of any age who cannot participate in the fun party-like atmosphere events.
Not because they don't want to do things others do - it's just that for a large population like my son, their "shine" needs to be more of a "glow" suited to their unique sensitivities...
Our "Life with Autism, Seizures, and a side of PANDAS" is something that significantly affects our son. He is non-verbal, an escape artist, and cannot handle large crowds, loud music, and overwhelming simultaneous sensory stimulation. Events like "A Night to Shine" would be more "A Nightmare on Elm Street" for him. He would be overstimulated, stressed, and a ticking time bomb of total meltdown waiting to happen.
For my son to shine, the atmosphere needs to be more of a glow...
Yet all these years later, all these "Autism Awareness Months" later, - society still doesn't understand that.
How for those who can participate and enjoy and look forward to "A Night to Shine" - there are dozens of opportunities for them out there - programs they can participate in.
But for those like my son whose needs are so different, there is nothing. Few to no programs, - so they, and their parents, are left in their eternal isolation.
Those like my son need "A Weekend to Glow" while their parents/caregivers get a much needed "Weekend to Remember" where both win. Where my son gets an opportunity to be away from us. A low key opportunity for him to glow in the peace and serenity of things he likes. Simply having a buddy who has fresh wind and fresh fire to chase him, tickle him, take walks with him, or simply sit on the couch and rub his hair as he so likes. The opportunity to be on the stage feeling the vibration of the music that is playing. The opportunity to be around others in his own low key way.
Where their parents get to have time to enjoy what others take for granted - a weekend of spontaneous.
I am blessed, thankful, grateful, and any such word that describes the absolute gift it was that someone "got it" with regard to the population of those who have disabilities as my son has. Those significantly affected by autism who cannot handle events like "A Night to Shine" but who still need the ability to "glow" for once. To get out of the confines of the four walls of their fortress from the world at home. To be the center of someone's attention in their own way - whether that means simply someone to play video games with them, listen to music with them, line up trains and cars with them, or simply take care of them and keep them safe.
Camp Blessing, TX "got it" this past weekend with their pilot respite weekend. And for once, I was able to let out a sigh of thankfulness and not one of longing.
No longer was I jealous of what the "A Night to Shine" had meant for others, because for once something was just right for us in a weekend for our son to simply glow and for us to relish in and remember. So many have asked what we did, where we went, and there too - is a lack of awareness. We didn't want or need to do anything special -- it is special just to have a weekend sans autism. Just to be able to complete a task without a hundred interruptions. To be able to get up and go somewhere and do something without the constant hum of autism tagging along. We don't need a vacation from our life, we need a vacation from autism in our life - and this past weekend we had that it was absolutely priceless.
And from the look on Brandon's face on the way home from Camp Blessing, TX, I think it was pretty priceless for him too.
Thank you, to all of you at Camp Blessing, TX who made that happen.
We will never forget how that one weekend to glow opportunity has allowed all of us to shine.
January 27, 2018
I used to think that it was politicians who need to spend a day in my "Life with Autism, Seizures, and a side of PANDAS"... But the older I get, or perhaps hopefully the wiser I get, I think it's actually young parents, or parents-to-be, who need to spend that day or week walking in my shoes.
In my old, tired, and nearly worn-out shoes...
In January, I quietly turned 50...
Brandon, who is the above-mentioned "Life with Autism, Seizures, and a side of PANDAS" crazy, mad, wonderful son of mine, --- is 24 years old.
I have spent about half my life so far, living a life few could imagine with a stress that is entirely unfathomable.
I have shared openly, transparently, and quite honestly about that life in my various blogs, each of which have a specific message from my journey:
From hell to HOPEISM
Journey through the Bible
Where HOPEISM Blooms
Life with Autism in Pictures
And the overriding message is this... while I have highlighted the very, very good, it is the very, very bad that is what leaves the bitter aftertaste at the end of the day.
I don't intend this to be a woe is me type post. I am stronger than that, and hopefully if you've read any of those blogs shared above, you would see that. It is more a woe will be to you if you don't heed this warning and pledge to be #AllIn.
And I don't necessarily mean this as a condemnation post to anyone reading this.
What I intend this to be, is more a call to conviction.
You must be convicted of something before you can fully understand why you must take action on it.
I'll put a spin on the saying, "Not my monkeys, not my circus" because I do not want to appear as if I'm equating children to monkeys - because I most definitely am not. But I do like that saying for how it applies to the point I wish to make.
If I could go back in time to April 2000 when a group of then rookie moms organized the first ever autism awareness rally and Congressional Hearings... We knew what caused our children's autism. We knew we needed to stop it. And we tried our very best to do just that. We begged fellow moms to join us, to hear us, to shout the truth with us.
Because if they had listened then, there would have been no need for a Texans for Vaccine Choice now.
Let that soberly sink in.
In fact, I'll say it again...
If parents, friends, relatives, co-workers, fellow voters, had been #AllIn then, there would be no need for me to beg each of you to be #AllIn now.
If nearly two decades ago everyone in our sphere of influence, in our "listserve" groups back then, would have been #AllIn -- we would have all been out of this mess by now.
Yet here we are.
Those veterans like me who are now 50 or older - still fighting the same fight. Still finding time, making time, stealing time for the cause even though we can never get back the time our children lost. Still hoping for the healing of our children's health that was stolen and may well forever be stolen.
As was the case then, many of us now veterans in this war look around and see the rookies among us wishing for change, yet not sacrificing a thing for that change. Content to know that someone else is out there doing or saying what they won't. Someone else out there sacrificing what they refuse to. Rookies today truly have no clue what their life will be like when they too, quietly turn 50 and are still in this circus of vaccine injury. When they wake up worn and weary yet still have to gear up to take care of their adult child with vaccine injury.
If the reality of vaccine injury has not sunk in, allow me to be your sledgehammer...
As hard as Brandon's toddler, child, and teen years were, -- I assure you his adult years have by far overshadowed all those years combined.
And the adult years will be longer.
It is you who need to see what it's like to have to lift, clean up after, and care for someone who weighs as much as you, or more.
It is you who need to see what it's like to still have the same expenses not covered by insurance that do not care if you are living on a retirement income.
It is you who need to experience what it's like to wake up and not have anywhere safe or appropriate for your adult to go.
I am tired.
I am way too busy.
I am financially broke.
But neither of those things are an excuse to not do what I can, give what I can.
As hard as it is, as vaccine-injured as your kids may be, -- if we don't succeed in stopping every vaccine mandate that comes through each session -- it will only get harder. You will be more exhausted. More financially ruined. And will have fewer options for help because there will be more and more the state must help.
And all who aren't in this vaccine-injury/autism circus -- these are very much your children because your taxes will be so high in caring for them for their life, that you will be as financially ruined as we are. Perhaps more so because there will be fewer and fewer actually able to work to contribute to taxes. We will all die, and you will be left with footing the bill for not only this entire generation of children who will have a normal life span but who will never be able to live or work independently, but the next one as well if we don't stop the vaccine mandate train now.
Those like me are fighting this war not for our children -- ours are already vaccine injured. We are fighting this war for your children one day so that you have the choices we didn't. The information we didn't. So that you can have the healthy children we didn't because of vaccination.
It is you who feel these aren't your children and this isn't your circus - who need to come spend a day in my home. It is you who need to see the terrible toll it takes. It is you who need to see the urgency to help fund Texans for Vaccine Choice and other like-minded organizations.
Because it is YOU who are voting for the candidates who will win the office who will then help mandate the further maiming of yet another generation of children by mandatory vaccinations.
YOU need to see the true picture of what vaccines do for health.
And to the current multitude of parents who do have vaccine-injured children, it is you who need to find something you can do or some amount to give - to TFVC. We veterans didn't have a dime to our name all those years ago when we were spending every waking moment planning and organizing and attending the rallies and hearings. While at the same time spending every penny we had in trying to heal our children from what we knew injured them -- vaccines. But we knew the urgency and importance and we did without. Without sleep, without a marriage, without money. We worked so hard to stop the madness then, so you wouldn't be where you are today with a vaccine-injured child.
Yet here we still are.
And here I am still pleading with you to think of all those in your circle, all those younger than you, - and all they will have to go through if you do not do all you can now.
Stop for a few moments and think about that.
Is the life you are living a life you want to pass down to anyone in your family who might have children one day?
Think of the milestones your child has missed -- do you want your children to miss out on those in their children should they be vaccinated to near death with no choice?
What is the ability for them to have that choice worth to you?
Don't be of the ignorant mindset that they won't be your children, it won't be your circus.
Because they will be.
It will be.
If you are fortunate enough to have a typical child - it is their children you must fight for so that they won't be left with vaccine mandates with no exceptions.
And no state left to hide in.
I was fortunate to have one non-vaccine injured son. He lives in California, they will most likely have a child while living there. They want to come to Texas one day when he is out of the Navy...
Don't allow our lawmakers to California our Texas!
Don't let all our work all those years ago be for nothing.
Do not think someone else is going to protect your child, your grandchild. It is your responsibility to do the thing you can do.
And everyone can do something.
These ARE your children, this is your circus.
And there is no choice but to be #AllIn
As for me, I absolutely detest having to give yet another dime yet again. I am at the age I should be enjoying empty nest and a life of traveling with my husband. Or at the very least be able to spend my money on whatever the hell I want to...
But yet again I will pledge to give that which I do not have to give, and trust that God will provide.
When fighting a war you don't get to stop when you're tired, old, burned-out, too busy, or too broke.
You get to stop when the enemy is tired.
When the war is won.
And it seems our enemies are getting their second wind.
And this war is far from being won.
So what will you give to help win it?
~ ~ ~
Be All In --
Click these links and take action however you can...
Texans for Vaccine Choice
Texans for Vaccine Choice Facebook Page
Texans for Vaccine Choice Twitter page
January 26, 2018
|Insert image of Brandon standing on that top rail...|
As I type this a few days out from "the incident" I can again feel that knot in my stomach. That feeling of having the wind knocked out of you... That horrified shock at what could happen. That thought of I'm 50 and too old for this shit...
Where there is nothing to hold on to?
Brandon was standing on that.
Standing on that top rail of the deck.
Not sitting on that rail....
But standing straight and tall on that top rail.
Did I mention that he was wearing socks?
And that they weren't slipper socks?
I mean, if I could pause for a minute and just state that when we "walk the plank" at obstacle course races, on a 2x4 that is like only a foot off the ground, I fall. The top of that rail in this picture is 7 feet 2 inches above ground level. I measured it. Brandon is 5 feet 10 inches tall. You do the math at how high above ground level he was...
When I went in the house to check on his food that was warming up, Brandon was merrily jumping on the trampoline. It couldn't have been more than 2-3 minutes when I went back outside to check on him and froze in shock at seeing him standing on that rail...
It's not like we are slothful parents... I mean for heaven's sake, we take every precaution we know to take, and can take... We live in a state of financial ruin in providing for his safety, treatment, and care.
There's a deck around the trampoline with rails in case he should have a seizure and fall while getting on or off the trampoline...
We have non-slip edging on the stairs of the deck to the trampoline...
Padding on the floor of the deck in case he has a seizure and falls...
Not to mention what we've done in our house for his safety...
Not only having to try and protect him from dangers you can think of, but having to have a crystal ball to see and prevent dangers that you could never even think of!
Obviously my crystal ball is broken in that respect.
And it's not like I could tell him to get down. The slightest agitation or fear in my voice would have startled him enough to slip or fall. So I had to ever quietly and cautiously moved toward him. As I got closer, my only lighthearted moment was in that by the expression on his face, I think even he was thinking this might not have been his brightest idea. He willingly reached for my hand and I essentially lifted him down...
God and his army of Angels were surely working overtime in protecting him that day.
I guess my next purchase is a security camera outside facing the trampoline so I can see if he begins to climb up there again...
Yay, more expenses......
It's all so unreal.
I wish society, our family, our friends, could get but an inkling of what this life is like. The constant... The ever so constant... I mean, what do we build next? A large net around the deck that extends 20 feet in the air with foam blocks filling the yard should he climb again.... and gawd-forbid, fall?
The stress of what could have happened....
Well, I guess if there is always a silver lining, I could look at it this way...
Next time I share that my son has "autism" and someone asks, "Oh, so what is his gift?" (Think Rainman and how everyone assumes that every "autistic" has an incredible ability that somehow overshadows that fact and makes it magically ok that they are severely affected by that "autism"...) I can answer that his is being fearless.
And that will make him having autism ok...
(Until while standing up there he suddenly has a seizure and falls and dies!)
January 12, 2018
|One cannot fully appreciate what they have accomplished until they look down and see just how far they've come...|
|The journey of a thousand curse words & complaints begins with a single selfie...|
This is my step.
And why that despite so very many thoughtful friends urging me to write a book, I could never. I am constantly growing, maturing, changing. On each of my blogs, I strive to be relevant - and in doing so that often means going back and reading what I shared - and adding to it wisdom learned - thoughts made clearer. As long as there is breath in me, there will never be a "the end" and a period. Nothing in my life is that definite. Finite.
These blogs, my facebook posts, are my ministry,
But I digress.
Back to my mountain...
My Navy-son took us to a remote training location used for teaching SERE students how to "Survive" "Evade" "Resist" and "Escape" enemy capture. When they say "Remote" - they really do mean "R-E-M-O-T-E" ---as in no trails in the mountain. No facilities, no help, no one anywhere near there, nothing. While he could not tell us anything about his training or experience in SERE as a student or now as an instructor, it was an awesome experience to see a glimpse of where he spent, and spends, his time in the Navy! Todd and I have loved that aspect of our son's Navy journey -- that we have made it a priority to at least be near, if not where, the most torturous parts of his journey occurred. We spent a week on the very beach and the very jetty and the very ocean that he endured BUD/S "Hell Week" on, over, and in. We spent an entire day on the very mountain he had to survive SERE school "finals week" on.
It's probably a good thing that I didn't fully comprehend what exactly Matt meant when he told us he was taking us to the mountains in the Navy remote training site for a hiking adventure. He wanted to take us to the peak where there is a rock and an American Flag and a book that the few who make it there sign their name in.
If you look at the pictures at the beginning of this writing, the last one is from where we began our journey. The highest of the peaks you see waaaayyyyy behind us was our destination. The flag, the book, was on that highest peak. But first we would have to follow a sandy riverbed that was challenging in itself. Walking a few miles in soft sand that slowly inclined was not the easiest way to begin an arduous hike up a mountain with no trail.
I guess to describe our little group hiking would be to say that Matt scaled the mountain like a "graceful gazelle" and I felt more like a heaving hippo having a heart attack with each step. Todd was in beast mode somewhere in between!
There was no shade on the path we were on. I can't say trail because there was no trail. We just had to literally forge our way there by following natural erosion openings in the brush and rocks. That there was no shade and that Todd was getting altitude sickness necessitated that we had to make the decision to go back down after we reached the first of many "false peaks" before reaching "the" peak. We were close, but no cigar. I asked Matt how much farther, and he would look at his gadget and assure us, "one mile...". I think though, that was more "as the crow flies" than "as the fish crawls!" Team Guppy is all for one and one for all. There would be no leaving anyone behind. While I do feel that eventually I would have made it with Matt being a "Suck it up buttercup!" drill sergeant, we would have had to have begun our journey much earlier to allow for my inch-worm crawling and clawing my way to the top. At my pace we would have reached the peak near sunset, and we had no flashlights to help guide our way back down!
While I was disappointed that we had to turn back - once I dared stand up at the peak we did make it to - the view around me was just breathtaking. The first two pictures above are the view from where we did make it.
I could be nothing but proud of making it that far. As hard as it was, as terrified as I was in climbing the steep parts, it was so worth it.
And I think that is the point that was so profound to me. That was such a personal "a-ha" moment for me in my "Life with Autism, Seizures, and a side of PANDAS."
When Brandon was diagnosed with all that he is diagnosed with because of his vaccine injury, it was like someone dropped us off at that remote training site. No trail, no map, no help, no nothing. With few exceptions, we were simply left to forge our own trail and painstakingly find a way to the peak of that mountain of healing, independence, -- whatever the goal may be for each vaccine-injured person.
As the title of my blog states, very much a journey from hell to HOPEISM.
So very often in this journey and the one that day on the mountain, I felt I could not go one more step. Endure one more moment. One more second, minute, day, week, month, year.
Yet like that day for me on the mountain, as hard as it was, as scared of heights as I am, I did manage to crawl one more step than I thought I could.
And I was so proud of that.
None of us on this journey give ourselves enough credit for that.
Most, like me, give ourselves no credit.
All we see is the climb.
Never the view.
I think for the first time in this life, that day on that mountain, I understood exactly how Brandon's life has forged my own.
Not that "we" in this life of vaccine injury are any better than anyone else - but we are deeper.
We are much deeper.
The realization of that seemed to take a world of inadequacy off my shoulders. It was no longer seeing all that I can't do or be because of the constraints of vaccine injury - it was look at how much we dare to do with the few precious moments we have free from the constraints of caring for someone with vaccine injury. We do more, feel more, embrace more, endure more, and are thankful for more.
A New Year's Devotional from Max Lucado was titled, "A View of Heaven" and described this personal discovery I had so perfectly. Those who do not live the life we must will be inspired by his words no doubt.
But to those who live the life that I live --
I hope it serves to bless you in knowing just how deep you are. How you already know and experience the last sentence in what I am about to share...with each skill learned, each new morning of hopeism you wake up with after each sleepless night of hell, each new treatment that works, each healing experienced...each day on your journey...
A View of Heaven...
I will make all things new. New hope. New faith. And most of all new love. The love before which all other loves pale. The love you have sought in a thousand ports in a thousand nights. This love of mine, will be yours...
Max Lucado reflects on those truths:
What a mountain!
Jesus will be there...
Believe me when I say that it will be worth it.
No cost is too high.
Whatever it takes, do it.
It will be worth it.
One view of the peak will justify the pain of the path.
I cannot put adequately into words what that day on that mountain and that morning reading those above words meant to me.
How it changed me and the view I had of the drudgery of my daily life.
All I could focus on in 2017 was the pain of the path.
Then on 12/27/17 at the very end of the year, that mountain, those words.
Finally, I could appreciate that one look at the view.
All the good that this "Life with Autism, Seizures, and a side of PANDAS" has brought to our life that truly counts...
And for but just a brief moment in time, forget about the pain of the path.
~ ~ ~
They don't know how to do it.
And above all - they never wanted to have to.
Unlike Team Guppy that day, they didn't choose to go to a remote training site and climb a mountain with no trail and no map and no help and no peak in sight.
They weren't given a choice.
They had to find a way up that mountain.
And no matter how long it takes, how many setbacks, quitting and going back down is never an option to reaching that peak.
That peak where each of our children's names are written in the blood, sweat, and tears of those who never left their child behind. Of those who carried them, albeit kicking and screaming, all the way from hell to HOPEISM.
And who do it each and every moment of each and every day.
What we attempted that day was good.
That our Navy-son Matt actually made it there was better.
But what each warrior parent does each and every day in caring for their child with vaccine injury, autism, --- is far GREATER.
|Few names are in this book at the peak of "SERE Mountain" at the Remote Navy Training Site. While I did not make it to do that, I can smile in that perhaps my name is written in a more important book: God's book of eternal life.|
|My Navy-son Matthew did make it to the peak.|
|I may not have made it to "the" peak, but the view from the peak I did make it to was pretty amazing...|
|Navy-Matt at the peak.|
June 28, 2017
It certainly isn't for those who "celebrate" National Autism Awareness Month.
It is for those who dare to take the time to read about the reality that is life with vaccine injury.
Life with autism...
(Which for the majority, is life with vaccine injury.)
Which for the majority of those I know, is very much the title of my blog in being a lifelong journey from hell to HOPEISM.
I want to share about a brief visit I had with one such warrior mom who I will not identify...
I have to share it because the reality of her life needs to be known because it represents the reality of so very many in this autism community. The reality of our lives that is rarely shown because if it were to be rated as a movie, it would have a "graphic violence" warning. The reality of our lives is so far from what is portrayed, how we actually live, it's pathetic. That so many like this mom are in every community, is a horrific tragedy of epic proportions.
And yes, I'll say it.
It's a tragedy that overshadows the holocaust.
I do realize that what I'm sharing here, is but the tip of a very large iceberg in how so many of us must live. As bad as what I've seen, experienced, or know of is, there are those who live with much worse. How much worse? That they would murder their children rather than live one more day with no help and no hope that help will ever come. That they would rather commit suicide because death is kinder than life. The iceberg of an entire generation of severely affected adults with autism (vaccine injury) will sink this country when the collision comes of when they are left to the state after their parents die or simply cannot care for them any longer.
I was just so moved by the stark reality of what I saw in how this warrior mom must live that I cried on and off the rest of the day. Not in pity of her, but for the situation she is in. She is a fighter. She deserves such enormous respect. It is the situation that moved me. The all-too-familiar situation of those who care for adults with autism who are bigger and stronger than they are.
I went to her house to pick up some supplies that she didn't need - and after a brief hello as I'm checking on my son in the car and she's checking on her son in the house - she showed me her new outfit.
Her son, like so very many, has behavior outbursts and meltdowns and at times pretty significant aggression. Like so many of us her house is adorned with patches from holes knocked in the walls. For some, it's from kicks or punches from innocent adults who have no communication. No way to express hurt, frustration, chronic inflammatory illness, or any number of things that vaccine injury or "autism" has triggered. My house is adorned with many such patches from holes in the walls from where my son fell because of violent seizures. A few weeks ago we were inaugurated with our "first". Our first hole in the wall that he actually kicked. It was late at night and instead of our son being able to read a book or watch tv if he wasn't tired - he laid there repeatedly kicking the wall.
(please ask us if we thought about disciplining him to not do that)
You see autism first hand even walking up to her house. The glass pane on her front door is covered in tape from a meltdown. I keep mentally thinking that I want to have my husband go replace the window for her, but then he's still got a few holes in our home to patch. What makes me so sad in that, is how I know we can't help her because we don't have the money to. There are so many things we need to do that we can't. It's always like that. It is us helping each other. Or at least wishing we could. With few exceptions, no one around us in our family, our church, our community seem to get that. Maybe if we wore dirty ragged torn clothes and lived on a street corner someone would finally notice our need for help. Too bad our need isn't that obvious. On the surface, we're just like any other typical family. The "disability" in our life nothing that at a quick glance stands out. Many, like this warrior friend of mine, live as I participate in my exercise class.... The "suffer in solitude and silence" mode in the back corner of the room.
For many, their suffering is very much silent. For fear. Fear that though they are doing everything in their power to help their child, someone will judge them and make them out to be the bad guy. Threaten to take their child away, as if there's a better place for them out there! Let's not blame an entire system that has failed our kids, let's blame the parent. I was a victim of that in how I dared to share bloody pictures of the aftermath of my sons seizures. Instead of anyone offering to help me figure out what caused them (or who - pharma) I was turned in to Adult Protective Services for sharing that reality of what vaccines did to my son so that others would know how to avoid that happening to their son.
Every time I go to her house and see her front door, I think how it is her church, her family, her neighbors who should rally to fix that door for her. But sadly, much like when my husband was abruptly laid off from his job, it is our very own community who rallies for us and who help us despite needing help themselves. In our case, a GoFundMe was set up where people who had no business giving anything because they were as broke as me - gave what they could.
Every.One.Of.Us. need a GoFundMe for something in our lives with autism.
(please suggest we seek state services/assistance for our loved one with autism)
How this friend keeps a sense of humor about her is beyond me. I admire her, and so many just like her so very much. Warriors living with such extremes in their children, never knowing if one moment will be a smile or a smack in the face. Never knowing if the day will be yet another trek through hell or the HOPEISM of as good a day as we can hope to get despite all our children must endure.
Like so many of my friends, this one is single. Her husband left her with a very significantly affected son who is taller and stronger than she is. Like so many of my friends, she's been in a crisis situation and has had to call the police or ambulance during yet another meltdown that our kids have that is triggered by who knows what... It can be as complicated as pain they can't communicate or that you did some sequence out of order and they just couldn't handle it. Whatever the cause, the outcome is always the same. Police arrive and the only help they can give is to handcuff a severely affected adult with autism. Which makes things worse, not better. Our kids have been tasered, and in a few instances, shot. Some suggest taking them to the hospital which is hilarious because there aren't even any hospitals that are properly equipped to handle the complex needs our kids have. There is no 9-1-1 for autism. There is no sensory friendly "hospital" for autism. There is simply no tangible, appropriate help for the brand of autism that most I know have.
For this mom, all there is, is bubble-wrap.
And a whole lot of faith.
When she showed me her new dress, for a split second I didn't know whether to laugh or cry.
I did laugh.
It was hysterical in a most horrific kind of way.
A grown woman, a dear friend, reduced to having to make a body shield out of bubble-wrap to protect herself. Bouncing off a wall would be much better than being obliterated by it. Her bubble-wrap dress was complete with duck-tape seams and velcro to attach her phone to it in case she needed to call the non-help 9-1-1 help.
She's pretty darn talented. This bubble-wrap dress had a crew neck opening, tank top straps, then went down to about her knees with duck tape side seams. I wanted to ask her if she could make me one with Camo-tape seams for one day if I need such protection.
And maybe some princess seams because, "Does this bubble-wrap make my butt look too big?"
If you don't live this life, I want you to read those last few paragraphs again.
I want you to fully digest that in a society where we have the technology and intelligence and resources to do most anything - we have left mothers like this one with no help, no resources, and very often no hope that things will ever change for them. Society has given her nothing except being reduced to making herself a bubble-wrap protective shield of a dress for in case her son has yet another meltdown and through no fault of his, takes it out on her.
With all of our American Red Cross and compassion and help for everyone in every other country or human situation, what we've told this mom is that all we can muster for her is bubble-wrap.
I told her she needs to patent that design because there are thousands of mothers out there who need that dress, or who will before they know it.
She could sell them online. Custom made with your choice color of duck tape for the seams.
With the epidemic numbers of autistic adults who have violent meltdowns, she would be rich.
Allow that to sink in.
This friend is pretty petite in size, so when I noticed before she modeled her bubble-wrap dress that her bottom half was a bit - bigger - I figured finally she was able to have time for herself and actually eat something.
But then she showed me her other design for everyday wear.
The bubble-wrap dress mainly for during a meltdown.
The shorts for daily wear in case her son shoves too hard or something. She took the waterproof pads that come with deliveries of incontinence supplies, and stuffed several layers in her pants all around her hips. If she was forcefully shoved, at least if she fell her hips wouldn't shatter. She would just bounce.
I want society to read that again.
What other parent in any other disability is reduced to bubble-wrap dresses and puffy pants?
We had a good laugh about her new wardrobe, but make no mistake, it isn't funny. We can laugh because we live it. It's the only defense we have against insanity.
When I left her house, I didn't think I had any room left in my heart for another scar, but that visit put one there. I cried all the way home for her, for so many others like her. I cried that one day it could be me being reduced to wearing bubble-wrap to protect against my son.
The worst I've experienced so far was a hand or arm too close to his teeth when he was mad about something or hurting. When trying to prevent him from hurting himself, at times I've been inadvertently slapped.
The injustice against us and our kids in these situations is nothing short of horrific.
I've had friends be out in public and suddenly their adult son went from happy to meltdown in a split-second. Instead of help from police called by perhaps well meaning bystanders to help them, they were punished, arrested. Absolutely no awareness from those whose job it is to help. Making a horrific situation become nothing short of a living nightmare.
I rarely take my son out in public because of the fear of what has happened to others, happening to me.
My friend shouldn't have had to even think about making a bubble-wrap dress and puffy pants making her look like the "Blueberry Girl" in Charlie and the Chocolate Factory.
She needed to have a list of phone numbers of people, of adult men who are trained in autism-care who she could call to come protect her and her son during a meltdown.
But where is the ambulance for that?
Where are the trained volunteers for that in each community?
Where are the short-term crisis centers where parents at the end of their rope could bring their children for behavioral intervention while they can catch their breath?
To even attempt to do that for every community would financially break cities.
Would financially collapse our country.
So who do we have to turn to?
Our families who give to most everything else except to the person in their own family who needs the help.
Our churches who send mission teams to every other country except for the autism community in their own back yard. Yes, they may "know about" Jesus, but perhaps we need to realize the equally important aspect of them actually "witnessing" the hands and feet of Jesus...
Our society who would rather pretend we aren't there or call the cops or CPS on us instead of taking the time to care, comfort, or collaborate with others in helping.
There are few exceptions, and for that we are thankful if we've been the recipient of such blessings.
But for most, help is few and far between.
If at all.
For the most part what I see is that this mom has a bubble-wrap dress, puffy-pants, and still a taped up front door window.
And as I laugh hysterically at the picture she sent me of her modeling her new wardrobe, with the smile that shows both grace and strength despite the adversity, -- all I can think of is what the helmet she'll make next will look like.
Because we all know, insurance or medicaid sure won't pay for a real one for her.
March 19, 2017
February 4, 2017
The Curious Incident of the Adult Protective Services visit during the day:
An Open Letter to politicians, policymakers, physicians, lobbyist groups, & passionate parents everywhere --
My name is Michelle Guppy. I am the mother of two boys. One of them is vaccine-injured. Significantly vaccine-injured. He is labeled as having "autism" but make no mistake it is very much vaccine-injury and I will not ever shy away from speaking the truth regarding that. One need only look through the twelve pages of medical office visit notes I painstakingly compiled to see that after each vaccination, I brought him in to the Pediatrician for an adverse event that was listed in the tiniest of prints on that package insert that comes with each vial of vaccines that I never ever got before I consented to the vaccine. But that's for another discussion…
Right now I would like to address another rampant epidemic that must be stopped.
The things of that nature that politicians, physicians, policymakers, and non-profit immunization groups that support them have declared "open season" to participate in lately.
The vaccine choice issue is not going away. Pandora's box has been opened and thanks to Dr. Thompson, the CDC Whistleblower, (and many others) the truth of vaccines has been freed and we mere parents will not stop speaking and sharing that truth. The lid on the truth will never again be nailed shut in the name of "the science has spoken" no matter how much those who profit from vaccines or whose campaigns are funded by vaccines wish it to be. The truth from the science that hasn't been allowed to speak is there for those brave enough to believe it. For those humble enough to do better because of learning it. Vaccines maimed my son, and hundreds of thousands of other children. As inconvenient and bothersome as that truth is, it still remains the truth. We've traded normal, acute, fully recoverable childhood ILLNESSES for chronic lifelong debilitating DISORDERS and DISEASES that are far worse than anything vaccinated against. Vaccines in the name of SIDS have murdered countless babies. These normal febrile illnesses being vaccinated against are not the plague of our time that will wipe out humanity. The plague of adverse vaccine reactions and the destruction of our children's brains is the plague of our time that IS and WILLforever alter humanity if we don't stop it.
When I did my own independent research and realized what I had allowed happen to my son in consenting to vaccines, I had a decision to make. I thought long and hard about that decision, because I knew the implications and what might come of it. I knew the risks of being transparent. I knew sharing our truth would make me a target. But as severely injured as my son was, I knew even more that I had to use his story, what happened to him, as a warning to other parents so they would not ever have to live through the hell my family has. Is. And so from very early on, I was transparent with the unpopular truth of what happened to him. When I heard over and over that "vaccines are safe" - I would share my sons story (that was really hundreds of other parents stories as well) about just how unsafe they actually are... When I would hear how parents were being told "vaccine injury is mild" and was portrayed as being as benign as "pain and swelling at the injection site" - I would share a picture or video of my son gasping and choking and seizing and convulsing his way through yet another vaccine induced Grand Mal Seizure. I did those things not to exploit him, but so the truth that was buried under the lies and corruption would be exposed. THAT, is the greater good.
Parents deserve to know both sides of the vaccine story and I believe with all that is in me, that my sons purpose in his injury is to leave a legacy of having shared that truth. Vaccine injury is not rare nor is it mild and if any good could come from the horror of him having to live through what he must each and every day of his life, it would be in sharing that truth as awful as it is to see, as horrific as it is to watch, or how painful that gasping for air is to listen to. My purpose is to share that truth to make vaccine injury "one less" nightmare another parent must endure.
Parents are not being fully informed of how more babies, children, and adults are being harmed or killed from the vaccine and not from the illness vaccinated against. They do not know the stark reality of trading a week-long inconvenience of illness for a lifelong reality of a child that could quite possibly miss every major milestone in life. As my son has. And in answer to the question "measles" or "autism" -- oh you bet measles. I'll take a strengthened immune system over a weakened one any day, - and any parent who is allowed to hear the fully informed truth of that, will choose that too.
It has been because of that truth that politicians, physicians, policymakers, immunization groups, and even some parents- have felt that it was open season to rapid-fire attack those who dare share that truth. Those parents whom I might add were like me, "Pro-Vax". For the record, I vaccinated my son on time every time. It was not until it was too late, that I realized I was fooled. Lied to. Deceived.
Politicians, physicians, policymakers, immunization groups, and fellow parents have called us such vile and filthy names it borders on criminal hate crimes. We've been threatened, yelled at, and made fun of, - all for merely sharing the truth as we witnessed it occurring in our own children.
Those who have differing views in supporting and believing in vaccines have said that if we don't vaccinate our children they should be taken away from us. That if our children die and they weren't vaccinated that we should be brought up on murder charges! So what then would be the charge we get to levy on the government when their mandated vaccines injure or kill our children? Because when you understand the toxic and carcinogenic sludge that is vaccines, vaccination is very much assault with a deadly weapon. Yet there is no recourse for us when our children are assaulted, injured, or killed. We are left to pay that price for the rest of our life, and our child's.
I respect that some parents do vaccinate. They have that right, just as I have the right in choosing to no longer vaccinate my son or myself because of the independent research I have done. Even though I disagree with their choice and try to share warnings and truth about what could go severely wrong and how vaccines are not needed to prevent normal, acute, fully-recoverable febrile illnesses that strengthen your immune system to better protect against things later in life that are deadly - I do it respectfully. I do not bully, name-call, curse at them, or threaten, or call in meritless complaints against them.
It is to that end that I say, "Houston, we have a problem."
Those of us who have done their research and who do not believe in vaccines (anymore) and who not vaccinate (anymore) are vilified in the most horrific fashion. Much of that coming directly or indirectly from legislators, physicians, and immunization lobbyist groups. That must stop. You cannot bully us into believing your position (your funded by Pharma campaign position) regarding vaccination. You will never convince us vaccines are safe. We believed you once, and our children paid the ultimate price of that deception with their health, and for some, with their life. To make this vaccine choice issue a war, is to create a war that neither side will win because of the carnage that will be left behind on the battlefield.
As I shared, I have dedicated my life to sharing my son's story for the purpose of sharing truth among all the lies. Vaccine injury is rampant and it is rapidly maiming the health of an entire generation. When Representatives are using their twitter accounts to call us "Anti-Vaxxers" (again, we did vaccinate our kids) "crazy as fuck" and "playboy bunnies" we have a huge ethics problem. That is hatred. That invites hatred and stirs up hatred, and no politician should ever be the one instigating such behavior. Yet time and time again, those behaviors are coming from those elected to public office. We are either called names, blocked, or any number of such tactics that are about winning, and winning only, at any cost. About hiding and blocking the truth at all cost. The truth that got lost somewhere in the puppet string entanglement of not serving the people who elected you, but rather the pharmaceutical-based campaign contributions that bought your election.
My son and I were the victims recently of that hatred, which brings me to the title of this letter…
The curious incident of the Adult Protective Services visit during the day.
I have done the advocacy I do in sharing my sons story for fifteen years. I was honored with receiving the Jefferson Award for my advocacy efforts and the contributions I have made in helping fellow parents navigate the minefield that is life with autism (vaccine injury). I share that only to illustrate that it has been my mission to help my son, fellow parents, and their children. I have been quite vocal in television interviews on Medicaid cuts, school issues for those with special needs, cameras in the classroom, community supports, and so on. I have been to Washington, D.C. to hearings and to rallies, and have given testimony in Austin on issues related to my sons vaccine injury.
Through all of that, not once has a complaint regarding the care I give my son or the manner in which I share the truth of his story been filed.
But this legislative session, mere days after I recently did a television interview opposing the bill that would allow minors to consent to the HPV vaccine, - my doorbell rings and when I answer it, it is an officer from Adult Protective Services who is there to follow-up on an anonymous complaint regarding the care of my son. I cannot begin to tell you how low that is. That just because of having opposing views, someone feels they can stoop to that level of meritless, baseless accusations using scare tactics to silence those who oppose their views.
Let me make crystal clear that I am not naming anyone by name and not accusing any one person, politician, or group. That complaint could have had everything to do with that interview against vaccines that I did, and it can have nothing to do with that interview I did. The person who lodged that complaint hid behind the ability to be able to call in anonymously. So I don't know who called that in. But I know when they did and I know why they did. And even if that complaint did not directly come from a legislator, their office, or a group that supports them, it most certainly came from the hatred stirred by them being so publicly vile against those who offer an opposing view. That creates an atmosphere of hate and invites people to stoop to such levels as what happened to me.
If the point of that baseless complaint was regarding the care of my son, allow me to assure every politician, every physician, every group, every person - of the care my vaccine injured son receives. My family has been forever altered by his vaccine injury. We have given up everything for him. We have spent thousands upon thousands of dollars in trying to recover him from those vaccine injuries that mainstream medicine refused to acknowledge let alone pay for. We sacrificed having a normal family relationship for the care of our son in that my "other" son only ever saw one parent at a time. He went on vacations with one of us, the other home caring for Brandon. At his sports events he heard the cheering from only one of us, the other home caring for Brandon. I gave up the pursuit of my education, my career, many of my hobbies, my everything for the care of my son. I gave up friendships, date nights, and even the ability to sleep in the same room as my husband so I could stay upstairs all night with my son should he have a seizure. We gave up our "other" sons college fund to put toward caring for our vaccine-injured son. We have given up everything to care for our son and it is a hideous thing for someone to hide behind a phone call to an agency for the sheer purpose of making our life that is harder than any of you could ever imagine, - that much harder. The only thing I can be accused of regarding the care of my vaccine-injured son is not having enough money to help him more than we already do. To pay for the things he needs and might greatly benefit from, that insurance won't cover and that we cannot afford.
Yes, whoever called in that complaint, succeeded. I was scared and shaken to the core. Check-mark duly placed in the win column for them. That visit happened during the week that was my son's last day to attend his therapy center because insurance denied our claims, during a week where my son was having numerous seizures, on a day where my son had two seizures. In having to cope with all of that hardship that is daily life with vaccine injury for so many of us, I had to also deal with a meritless agency visit questioning my care of my son. Making my burdens heavier. My stress greater. All because I dare to share the truth about vaccines. They succeeded in scaring me. They succeeded in adding to my stress in that now every time my door bell rings I'll wonder if it's another complaint, or worse. They succeeded in many ways, but they did not succeed in silencing me. My greatest advocacy and care for my son comes in sharing the truth of what happened to him and I will not be scared into silence. I owe him more than that no matter what it costs me. To do any less would be the very abuse and neglect I was accused of.
If whoever called in that complaint had taken the time they spent digging through my website, my blogs, my facebook, and my twitter account to piece together pictures and videos to try and find some way to incriminate and silence me; and instead actually read what I wrote that went along with those things or researched independent proof of how vaccines never saved us and how they are in fact maiming us, -- they would have actually accomplished something useful with their time in realizing the truth.
A Representative in a tweet recently called us "crazy as fuck."
She is actually partially correct.
I was crazy as fuck for ever consenting to vaccines for my son.
And make no mistake, I will never ever vaccinate myself, or him, again.
It is my body, my choice.
He is my child, and to vaccinate him or not is my choice.
I have read and have the ability to understand medical abstracts and studies. Most of all, I have this awesome superpower that allows me to follow the money trail of who is telling me vaccines are safe so I can truly know whose science to believe.
In closing, I deserve to know who called in that merit-less complaint. The politician who called parents like me "crazy as fuck" and the one who referred to those who are "anti-vax" as "Playboy Bunnies" and anyone else who while serving in public office posts such venom deserves to be reprimanded for instigating such division that leads to the kind of horrific experience that I just had to go through. That person who submitted that complaint against me did so through Adult Protective Services in Austin. I ask of legislators, when parents like me are the targets of those public slurs, what agency do we call to lodge a complaint of abuse? Who knocks on the doors of those politicians to investigate that and reprimand or remove them from public office? When we feel threatened as I do by baseless, merit-less complaints against us, who protects us from what those with more money and more power than us can make happen to us? Who investigates the person who called in that anonymous complaint now that it has been found to be without merit?
Texans, Americans, parents on either side of the vaccine issue, all deserve an honest, open, respectful, public debate on this issue.
Sadly, we are getting neither of those things.
~ ~ ~
And as for my son and that complaint?
Since vaccines have taken away his ability to speak, his story of what happened to him is shared through my words, videos, and pictures. In this society where what happened to him is ignored and our truth in sharing that dismissed, it's the only way I have to prove that he is here and this is what happened to him because of the callous disregard of those who make vaccines, approve vaccines, mandate vaccines, profit from vaccines, and who bear no liability for vaccines.
It is the CDC who should have received that knock on their door, not me.