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.
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