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 quitfighting 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.



December 9, 2016

My Mighty Morphin' Power Moves...

So today an e-mail from Amazon came across my inbox.  It was an e-mail asking me to rate a recent purchase I made...  I was about to delete it, as thinking about why I ordered this particular gift for someone brought on negative vibes that I have been trying to put in the past...  But as I was about to hit "delete" I could hear that marvelously michevious grinchy-grinch humor rumbling from that sweet spot of sarcasm that often saves my sanity.

So I rated the item.  My reply too long to share there, so I shall share it here....

I gave it five stars.

I ordered this particular item in response to a twenty-something year old who in all his wisdom of those twenty-something sheltered years, thought he was justified in sending me an e-mail outlining how "no one likes me" and "nice power move" in response to me challenging a family member on blatant lies spoken against me.  Mind you the e-mail he was replying to was not addressed to him, but the master manipulative party it was addressed to, saw fit to send it to everyone for the purpose of getting people to "no one likes me".

I choose to polish the mental toughness I must have to survive vaccine injury and all the horrific seizures that come with that, -- by humor.

I was going to buy this "gift" for that particular person who I would have thought knew better than to do that to us, Todd and I, who have done nothing but love and support him...  Who we have included in family gatherings as if he were our own son.  Who we have shared our precious time with Matt with so that all could be with him --when all we wanted was to have our son all to ourselves.  So much for thinking of others.  What is that saying?  "No good deed goes unpunished?"  But I digress....   What an "power move" that was in loving and including someone who would turn on us for a baseless reason, a reason not his own, but of what others shared with him about us.

His words "nice power move" stuck in my head and made me think of Power Rangers.  So I went to Amazon in search of a "Power Ranger" to send to him for Christmas as a reminder of me and my many "power moves".  To give him one final "Power Move" because after all, if I'm going to be accused of these "power moves" then I might as well do one to deserve the accusation!  I even had a great caption for the gift tag, "Because I'm all about those Power Moves."  Yellow isn't really my color, but sometimes you have to go with what you've got, and it was either yellow or pink, and I do not do pink.  Shudder.

But, I'm not going to send it to him.

I think the realization one day of what he's done will be enough.  And even if he never realizes that and continues to ignore us for no reason, that is on him.  Not us.  This "Power Ranger" sitting on my desk has been great therapy in teaching me that.  Not a bad lesson for $18 and free prime two-day shipping.

Instead my "power move" will be to pray for him.
Pray that he never has to understand what it is to truly be ignored.  In having a son who was maimed by vaccines and who has been ignored by society, by doctors, by our government.  For us to have lived that for so very many isolated years - to have had so many needs ignored by insurance, by state services, for some by their very church - and then to have someone "ignore" us further?

It's hard to even be mad at someone who is that shallow.

I think the best test of your sanity is when you can look at an insane situation and laugh.  Truly realize it's not you, it's them.  When you can look at a situation and know that it's not about who is right or wrong, it is about what is best for you and your sanity.  And for us, and our sanity, it is best for us to move on believing in what Maya Angelou says, "When people show you who they really are, believe them."

Love them...

Forgive them...

But believe them...

It took a long time and many repeated hurts and manipulations to believe that in those who are supposed to be closest to us.  I believe we are better than that and that we have so many around us who love us and believe in us and who would be there for us through calm or conflict.  Those are the people who we choose to invest in.

I watched a movie recently that had a very profound line in it.  "You know you are over being hurt when you have an opportunity for revenge and do not take it."

This Power Ranger figurine was my opportunity for revenge.  I had it all wrapped and ready to mail...

But I didn't.

It sits on my desk as a reminder of my true "power moves" that he nor those who have manipulated him against us will ever be able to fathom.

The power moves of forgiveness.  Of truth.  Of understanding conflict and how to deal with it and work through it.  Of loyalty.  Of love.  Of what a true family is and how a real family should treat each other.  I don't say it often enough, but it is my husband and his parents who have taught me that.  There has been conflict but there has always been love and working through it.

Especially as a warrior mom, the power moves of enduring the unendurable.  Of having no choice but to bear the unbearable.  Oh how I wish I could quit on my son like they have quit on us!  But because my son cannot quit his autism and the life it forces him to live, we cannot and will not ever quit on him.  There are way too many out there who do not comprehend that in any way, shape, or form and that is the greatest tragedy of all.  To not truly know what unselfish love is.  To not truly understand what it means to not quit, but to stay, stand firm, and fight for what you love, for what you believe in.  It is so easy to quit and walk away and that is what he has done.  It is he who that "power move" will bite in the ass one day down the line.  Team Guppy has learned the hard way that life is measured by how you act and what you do during the not-so-easy times.  When those around us have long since gone, here we will remain, marching on.

Our "power moves" are measured by the words HOPEISMNot Dead Can't Quit, Be Brave, and Never Quit!

Our power moves are in how we pursue truth and have pursued a relationship despite all the roadblocks.

But I've come to realize that our greatest power move is in moving on.

In not letting that which we can't control, --influence us, consume us, change us, or define us.

In not continuing to expose ourselves to the bullets that continue to pierce.

So yes, Amazon review folks, I give this "Power Ranger" 5 stars and 2 Guppy fins way up.

I would highly recommend it to anyone who needs healing in the face of false persecution.

It will sit on my desk as a reminder to make each day a positive power move in being thankful for those in your life who love you so much they would pursue you from hell to HOPEISM and back again!


July 5, 2016

The Crazy, Mad, Wonderful...

The crazy, mad, wonderful world of being a warrior mom... That should be the title of the book so many tell me I must write about our "Life with Autism, Seizures, and a side of Chaos..." There have been many titles I've thought of using over the years. I think my favorite is still "There's Poop Floating in my Tub: and other Oddities of Life with Autism." We certainly have experienced enough of those oddities to fill an entire book series. But I digress --
The crazy, mad, wonderful world of being a warrior mom --- is that as I sit here -- I've waited an entire year for this year's opportunity for four nights and days of respite. Sweet, blissful, respite. Oh, we occasionally get a break - at least 3-4 days a week he goes to his therapy program. Once a quarter or slightly more often we actually get a few hours respite on an evening or weekend day. But for overnight respite. For 4 nights and 4 days. That is sheer luxury. It's like, well, what typical families can have anytime they want. Their typical kids going to another typical friends house for a sleepover. Going to Grandma's for a week. Luxuries. Those things are luxuries. The parents who can take advantage of those things are soiled rotten with extravagance. And for the next four nights and four days, I get to be them. I've longed for this day. Camp Day. I've counted down. I've wished it was sooner. More often. But as is always the case, on this day I am not filled with the sweet decadence of no worries, but rather the bitter taste of what if. I mean, when the phone rings with my typical son at someone's house or Grandma's it will be about those silly things typical boys do that a stern threat will thwart the continuation of. If the phone rings while Brandon is at camp -- he's either had a seizure and a bad fall, or they've lost him. Hence the "OMG-when-will-camp-start?" and then the "OMG-how-can-I-leave-him-there!" Just this morning - his incessant humming for the last two days has me at the point where Todd needs to hide the ice pick so I don't use it to gouge my ear drums out. I literally cannot will the clock to move fast enough forward to peel out of my driveway and be the first in line at the camp gate to honk the horn in cadence with Brandon's humming until they come get him and I can leave skid marks leaving camp. But as I feel the sweet relief of writing that - I know that once there I will linger. I will grill his counselor in testing him to make sure he read my twelve page "Caring for Brandon" document that is highlighted and referenced. (Ok, maybe not twelve pages and maybe not referenced, but it is four pages long and there are highlighted parts.) I will cry. I will regret wanting to leave him so badly. And I will cry some more as all of my fears will scroll through my mind. What if he wanders off. What if they don't feed him enough. What if they don't do his supplements right. What if he wanders off. What if he's cold at night. What if his counselor actually dares to sleep and Brandon is wet. He has a seizure. As much as I want to take him, I don't want to leave him. All of my hopes and fears in my life with autism and seizures summed up in that sentence. I think perhaps for me the only reason I can actually leave him and drive away with tears streaming down my face, is because I know I must. This camp each year, prepares me, and him, for what will come one day when I am no longer here. I will have to trust. Brandon will have to adapt. And it reminds me that all I truly have control over is my HOPEISM. In believing in prayer. HOPEISM that the heart of all who are part of Camp Blessing, TX is the heart of all who will be caring for him when I am no longer here. Prayer that his counselor, his caregiver for the week is someone who is given supernatural ability to endure. To understand Brandon. To persevere. Someone who is superhuman and needs no sleep for the next four nights. Prayer that God will give him an autism-free, seizure-free week. Prayer that he won't wander off or fall down. Peace to know that it will be ok. As I sit here with his bags packed, his supplement suitcase packed, the forms filled out and the car loaded as if we were moving out of the country - I'd like to think that this fifth year of Camp Blessing, TX for us will be easier. I mean, we are veterans at this. But it's not. It never gets easy. Autism doesn't give you that luxury. All I have is the fact that our life with autism is in fact a crazy, mad, sometimes wonderful life that has landed us somewhere between the sacred and mundane but always, always, right smack in the middle of where our faith that it will all be ok meets with God's faithfulness that it will indeed, be ok.

March 1, 2016

Through the Eyes of a Lion

I want to share with all of you a portion of our Team Guppy Christmas Letter (below) that we sent out this past year.  Each year I try to find a way to sum up what we've learned through that year -- and this picture I saw this morning while scrolling through Facebook made me think of that again, in light of what Todd and I are going through in his unemployment.

 I finally quit spontaneously crying at the enormity of it, but each morning when I wake up I must again face our reality and the vulnerability in that, and for a few moments just panic.  I'm a control freak.  I like my chaos controlled!   And this chaos is so totally out of my control!  Just when I think I can't get any further from my comfort zone, God redraws the boundaries and shows me I must.

Which is why I was drawn to this picture when I saw it.

In a way, (a very small way), I am thankful for these "evils" I have been forced to face because of how they have changed me.  I have had to confront life with autism, seizures, the trauma those things have brought upon our son; ---and now, a side of unemployment.  Through the course of our journey I have had to learn what true hardship is, and most importantly, what it's not.  But slowly, begrudgingly, albeit at times kicking and screaming in protest, -- we got through it.  Beaten, bruised, and scarred at times, but always we get through with a little help, prayers, encouragement, and now support from our warrior friends.  The battle is both enlightening and empowering.  It's odd to see it that way, but it's true.  If we were to have gone through nothing of what we have been made to go through, we would be the very people we see, perhaps know, that we definitely don't want to be.  That is the thankful part in all of this...in what we have learned, how we have grown.  Our whole attitude changed in exactly what this picture says --- knowing we are confronting what most people refuse to acknowledge.  The lies, corruption, and evil that brought us to this battlefield. Running toward the roar of our situation and not shying away from it.  Staying the course when everything in us screams to turn back and quit.

I sit here humbled by it all.  By the strength, courage, and determination of this warrior community we are a part of.

(With that said, I would very much like a season of boredom please.)

Through the Eyes of a Lion...

What has inspired us
this year were truths found in that book by Levi Lusko...

It speaks of how we live with our heart set on heaven but our feet still here on earth, and how we must learn to navigate that space between promise and fulfillment.  Jesus died on Friday, he rose on Sunday, in between is Saturday.  Saturday --- where each of us must reside.  The book is about how to keep going during those Saturdays where  it seems that our "greatest endurance sport is disappointment." 

We've certainly run that marathon this year. 

Each day for us is an indescribable challenge.  We must bear burdens few could ever fathom, the reality of that often taking our breath away.   But as he points out in the book, "God always grants incredible power to those called to face impossible pain." and "Suffering isn't an obstacle to being used by God.  It's an opportunity to be used like never before."    I do believe that.  I love his description of hope, which I call HOPEISM:  "HOPEISM is a joyful anticipation.  When you have hope, gale-force winds can blow and tsunami waves can smash into the hull of your life, but you are buoyed by the belief that the best is yet to come, that brighter days are ahead.  HOPEISM quietly tells your heart that all is not lost, even as storms rage."   He encourages us to "Run toward the Roar" meaning that most when they hear a lion roar they will run away.    He encourages us to run toward that which is challenging - run toward our fear -- run toward our faith -- and NEVER QUIT.   Turn your mess into a message.   Your pain into a platform.   Your trial into your testimony.   The trash that has come into your life into triumph.      

Together Todd & I savor each good moment and hang onto HOPEISM through the not so good ones.

We dream, dare, & do. 

We do not quit, we overcome.   

We run toward the Roar!   


January 4, 2016

What Brandon taught me about Birthday's...

Happy Birthday Brandon! I wanted to take him out to dinner for his Birthday today..... Instead we went out yesterday on my birthday. It was such a beautiful day and he was doing good - so in our "Life with Autism, Seizures, and a side of Trauma" we've learned to not plan ahead, but to instead go for it in the right here and right now. So we did. We took advantage of a good day and he was my Birthday date yesterday instead of me being his Birthday date today! I think I got the better deal! Team Guppy has learned the hard way to take advantage of what the moment allows, because if we wait for another moment to do it, seizures will prevent it. I'm glad we went out on our adventure to the Nature Trails then dinner yesterday - because early this morning - on his 22nd Birthday - he had a seizure. Perhaps it was early enough in the morning that maybe he'll be up for going out later - but even if not, I'm so glad we went yesterday. I am so glad we took advantage of the moments we were given instead of waiting for the moments to come. I think that lesson is perhaps one of the greatest Brandon's life has taught me. To live in the moment. It is only this moment, right here, right now, that we have to do what we must do. To witness to who needs to hear about Jesus. To live to the fullest. This moment to make a difference. This moment to speak truth. This moment to not waste worrying what others think. This moment to choose who and what our priorities will be. This moment to not squander on any thing or any one not a priority. That one is a hard one for me. I squander too many moments on those who don't have even a moment to be a part of our lives. I give too many thoughts to people who do not ever give us a thought. And speaking of thoughts.... I've thought a lot these last few years about "Birthday's" and what I've felt the true "gift" in them should be. For me it's not people giving Birthday gifts to that person, it's that person giving a Birthday gift to God. The former creates a "me-centered" existence and I've seen enough how that plays out in most teenagers and then in most adults. "Gifts to me, it's my birthday, give me..." To me that creates a lifetime of thinking the world owes you something. It is in that where I find such thankfulness in Brandon's life with autism. We were never a part of the "bigger and better" Birthday parties. Gifts and gift bags and whose party was more lavish and how do we top last years lavish. We lived simply. No way in our chaos we could ever compete with anyone else, so we never even tried. My thinking has shifted to that yes, it's your Birthday. You are loved. You are a blessing. Now what gift are you giving God for another year of life? His Birthday gift to you was life, what gift to him will you give back each year in return? Even children can be taught to understand that concept. What will you promise to do better as you blow out those candles on the cake? How will you be a better person this year? Who will you help more this year? Who will you befriend who has no friends? What gift to someone who truly needs your Birthday gift of money, help, things, encouragement will you give this year? I thought about that a lot yesterday... and I think for me it's that squandering thing. I waste so much time pursuing things or people who really don't matter. Not that they aren't loved or really don't matter, but for these precious moments I have so few of, I need to let God go after the one and me worry about the 99 right here in front of me. I worry too much what others think and let their lies and confusion muddle my world. Less of me and more of you God. Less of them and more of your word.
That is my Birthday gift to you, God. Thank you, --thank you for the gift of my life. I vow to use it to the fullest to bring you Glory. I want to give gifts to others. Inspirations and encouragements to people so they may know you, follow you. That it's you whom the gift of HOPEISM flows from, not me. That it's you who gives the strength of NDCQ, not me. Brandon's Birthday gift to God is how he draws me closer to Him. I can't think of any better Birthday celebration than that. Not healing, not even if Brandon's Birthday had been seizure free. Nothing.
Ok, well maybe..........

November 5, 2015

In the Shadow of a Lie

My written testimony for the IACC
               November 2015

My name is Michelle Guppy, parent of a severely affected adult with "autism" -which we all know is not autism at all, but vaccine injury.  Those responsible for causing it and those who do nothing about it in the medical industry - call it autism to avoid any awkward guilt of having been absolutely apathetic about causing it and too cowardly to admit it. "Pharma's profit and our political career protected at all cost!" is their secret motto!

My son is 22.  He cannot read, write, or speak.  He has autoimmune bowel disease, PANDAS, seizures, chronic yeast infections and a host of other illnesses that I guess I made up because no one in any medical center has ever been brave enough to acknowledge it.  Only those physicians who either have their own vaccine-injured child or who were brave enough to believe parents and left traditional medicine to actually rediscover what medicine was supposed to be about all along -- healing.  Healing, not prescribing.  Listening, not doubting because "it just can't be".

I testified before this very committee in November 2013.  You are welcome to view my blog where I shared about that experience.   At the bottom of that blog is a video of what my testimony was that day.  I encourage you to listen to it.  I have the same things to say for this meeting, plus these new remarks. 

Oral Testimony at IACC

Blog about IACC Strategic Planning

Not one thing has changed since I attended that meeting.  Not one thing has changed for any of our children since the very first IACC meeting. Except that they are now adults with even fewer options.  With even more exhausted parents.  Who are even more in debt because insurance still won't cover treatments that actually work.  Except that more are diagnosed with "autism" -- and more will have no doctor in their medical centers who know a thing about testing and treatment.  More doctors in mainstream medicine will refuse to attend biomedical conferences by other doctors who have been brave enough to listen to parents and who are successfully helping their patients overcome pain, make progress, and gasp! work toward healing!   More parents will have need for respite services that aren't there or that they cannot afford.  More "children" will age out of public school and not have been properly educated or prepared for vocational anything and will have nowhere to go.  Our children need "college" not institutions.  Lifelong assistance on working toward skills.

I sat at my desk with a blank document for a week now.  Simply paralyzed.   There is so much I need to share in this letter of testimony to each of you on the IACC that I have simply not been able to sort it out to begin.  But something happened last night that helped me.  Yet another crisis.  From yet another mom.  I will share snippets of our conversations, and those from other warrior parents.  I want all of you on this committee to read their words.  Their cries for help.  And never forget them.  These words reflect what is happening to parents all across America.  Warrior moms and dads and caregivers who have given their all for so long and who are simply exhausted.  Their "HOPEISM" and their "NDCQ" (Not Dead Can't Quit) mentality that has held them up for so long - cracking to the point of wanting to just surrender.  Wanting to just die.

Why is this happening?  Why are parents at their breaking point?  Because people like each of you on these committees will not listen to parents.  You will not go where the truth leads nor where the need lies.  For fear of what it might make you have to confront.  So instead, you study the same things over and over, things that have been asked and answered but no action ever taken.

And all the while parents like me are helping pull back parents who I am speaking of from the edge of despair.  I don't pity us parents and our trials.  I pity those of you who are made aware of our trials, our needs, yet do nothing.

This is not just one parent -- I hear these same vents, these same cries for help from many!  We parents who are overwhelmed with our own children and adults cannot physically help in these situations!  We need help ourselves!  We need crisis caregivers and a safe Prescription drug free place where they can get help and we can get sleep!  Respite!  Reprieve!  We need doctors who understand that autism is medical, NOT psychological!  We need healing, not prescription drugs!  We need treatments and testing, not restraints and more prescription drugs!  We need short term residential options that will honor and respect use of supplements, special diets, and individualized treatment plans.  Where?  Where is such a place that parents can afford and don't have to be on a waiting list?  Behavioral meltdowns and crisis' do not wait until the child's name comes up on a waiting list.

This from a parent:
Well ya know he seems okay, til he's not! We all cried ourselves to sleep around 1. Talked about family suicide, that's just so not normal. We r just going through so much.  I can't stop crying and I know I have to calm down but I'm not handling it all. Too many days without sleep! I'm scared, of so many things that I feel paralyzed.  I've got to help him somehow! I know that it's his stomach as well because it's happening right after food!  I'm teetering on the edge of despair!  Either God will intervene or.... Life will be not worth living!

This from a parent:

It's sad that other people don't have any idea the life we live. The despair, the constant struggle

This from a parent:
I don't know if I'm okay .... it's all just too much. It's so hard to have NO HELP so I can work.  I'm gonna call and get his teeth done, even though stupid insurance won't pay. I don't know what to do. Maybe his teeth hurt. THEN, I'm going to go to the neurologist and see about these crazy incidents being seizures? What else is there? I surrender.  Surely God cares, I just can't tell anymore

How many more similar messages must be shared with this committee for you to understand the emergency this epidemic of vaccine injury, excuse me, "autism" is?

The meeting I attended to give oral testimony was during a strategic planning.  There were items listed for people on the committee to "discuss" that any parent like me could have drawn out a treatment and action plan for in one day.  It took this committee a year to look into those things!  Things we've been begging organizations and committees to take action on for years.

Part of the problem is that the scope of this committee is too large.  There must be two separate committees to address the needs of both ends of this diverse spectrum.  Those who are higher functioning and who can speak for themselves, and those like the majority of our children who are non-verbal and significantly affected.  To have high functioning "Asperger" adults or professionals on a committee addressing the needs of those like my son is not appropriate.  They have no clue what our lives are like.  We need parents on this committee -- parents who know what is needed.  What it's like.   The entire first half of each of your meetings should be parent presenters or independent thinking professionals and physicians who actually help heal our children.  Then the second half of your meetings is making what they share that is needed -- happen.

In closing -- though I have much more to say -- I will say this...  If you want to truly know what the issues are for us, ask us.  Set up an online survey and ask.  Ask what are fears are, our needs are, what is working, what isn't.   And if you want to actually be the committee who does something about it -- believe what we say.  And act on it.

Back to my friends in crisis...

One of them has an adult son who is non-verbal.  He has a myriad of iatrogenic and epigenetic disorders that cause him to have periods of behavior issues because he is in pain and cannot communicate that.  He has aged out of public school, and his parents fear he will be dismissed from the private program because of medical based behavior manifestations that he cannot control.  His parents have gone to infinity and beyond for him and still cannot find consistent medical care nor can they afford to pay for things that might help that insurance won't cover or that are deemed illegal to medically use.  They both work just to care for him, and if he must leave this program, one of his parents will have to stay home with him until they can somehow find another place that will accept him.  He needs 24-hour supervision.  He needs highly trained staff.  State-based institutions are not an option.  Parents like me, like all I know, would rather die than send their child to such an abusive restrictive incompetent prison.  As if there were even enough to hold all our children if we had to resort to that.

So tell me - what do I tell her?  What do I tell all who message me long after each of you are sleeping soundly?  Where do they turn?  Where can their children go? 
Who will help them?

I sure can't.  While my friends are living their own brand of hell, I'm living mine with seizures in my son.  I've been to every top Neurologist in my mega-medical center.  No help.  None.  It is I who bring research to them, and they who look at me dazed and confused.  One replying with, "Well, what's your end game for him?"

The truth is a lion.  It is a powerful thing.  It is a scary thing for those living a lie.  When that truth roars in the jungle, many instinctively run away if they value their life.  Their career.  But few....only a few brave souls run toward that roar.  Pursuing truth at all cost is greater than any harm or death that might happen in its pursuit.  Dr. Wakefield was one such person.  Recently, RFK, Jr. another such.  Many parents and advocates and thinking organizations and physicians have run toward that roar.  Recently the Nation of Islam has joined the ranks of those brave souls running toward the roar of truth. 

What will this committee do?

Will you run toward the roar in pursuit of truth for what has happened to an entire generation of our children who are fast becoming adults, or will you remain in the safety of the shadow of a lie?

Your position, your influence on this committee means that you agree to be a pacesetter in addressing the epidemic of "autism" and all that goes with it.

If you do nothing, if you do not run toward that roar and do all it takes to help our children, you will still be a pacesetter.

You will have simply decided that there will be no pace.

June 8, 2015

I have 99 stressors

I recently wrote this as a Facebook post ---

I have 99 stressors and 102 of them could be solved by being able to take back all the vaccinations I allowed.
It's that kind of weekend.......
Autism sucks.
And all I see in my news feed is how they want to give Bruce Jenner some "courage" award. Bite me. Courage is what our kids do daily -- having to live with something they don't understand, are in pain because of, but cannot change with money or an operation. Courage is the parents whose lives have been uprooted, who can hardly find time to do or pursue any interest because of the never-ending relentless demands of autism. Courage is how they stay and face it each and every day. Finding a way to deal with what they cannot change. Courage is overcoming what defeats you no matter how many times it defeats you.

It seemed to strike a chord with many of my fellow autism warriors.  I can't pretend to know why or speak for them on why -- I just know why for me.

This past weekend was a particularly tough one.  Ok, it sucked.  Big time.  A wonderful consult with a wonderful autism doctor earlier that week led to a renewed commitment to following the ketogenic diet she has for my son.  She even shared recipes she uses which was a huge stumbling block for me - just figuring out what to cook, what ratio, etc.  Saturday I was to go shopping for all the ingredients and begin a cook-a-thon to have a bunch of meals for him ready to go.

I guess that was the beginning of it.  That yet another weekend would be consumed with yet more autism.  It's summer.  School's out.  We should be footloose and fancy free.  But no.  Lately autism has seemed like a huge solid mass sitting in the room that I could not move or escape seeing.  It was in every room.  In every aspect of life.  But it's more than a solid mass that bears a burden so heavy it breaks your back trying to move it - literally.  It's more a vapor.  It permeates every corner, crack, and crevice.  Saturday mornings are the mornings Todd gets up after sleeping in (for him) and gets Brandon, -- his bacon, his bath, etc. so that I can have a morning not doing those things.  But I guess when Todd got up, he went outside in the Log Cabin and I guess fell asleep in the chair in the remote corner you can't see from stepping outside the back door.  I got up, Brandon was up, and Todd was nowhere to be found.  I called, yelled, and literally called - his phone.  No answer.  I had no clue where he was....I did look out in the Log Cabin, but didn't see him.  I did call, he didn't hear.  I became more and more angry.  The one morning I get to not have "autism" I found myself doing autism.  Finally Todd came in the back door all leisurely, and of course every one of those "I have 99 stressors" were unleashed on him.

And it went downhill from there.

I try to be so hopeful with my HOPEISM.  I try to overcome autism as best I can for Brandon, for me, for my family.  I think most days I win in that.  But also, I try to be real in the process.  And I guess if I'm being totally real - one of the most courageous things one can do is admit not so much defeat, but an overpowering.  A suffocation.  An oppression.  A desire to raise a white flag and just quit.  Those are the sides of our lives with autism that hardly anyone sees in its true raw form.  It's too embarrassing.  Too open to judgement.  Too real.   Too ugly.  Too much.

The things we argued about, the things I yelled about that day, were very much directed to each other.  But it wasn't about us.  It was because of autism.  Autism had slowly crept in all around us for too long and we were suffocated.  With no one else around, we turned on each other.  The things he said about me, the things I said about him, -- were all a direct result of there being not only no more of "us" individually, but no more of "us" as a couple.  I think at one point when he was sharing things with me, I had totally tuned him out.  I admit that.  He knows that.  I was just beyond my limit.  I had nothing more to give or say. And I'm not one who has a lot out loud to say anyway.  He did at one point ask what I was thinking, and I simply said, "Nothing."  But that was a lie.   I was lusting.  Pure in the flesh lust.  No, not for another man and romantic escapades.  Just lusting for a weekend away from autism.  And not "a weekend" - but "weekends."  The kind of weekends you get when you can send the kids to the other spouse or to Grandma's.  Not a four hour teaser, not someone else in my house, but to just be in my house for a whole weekend with no autism.  To be able to plan to do something, and to actually be able to do it.  I was thinking that for us the only way that would ever happen is if we divorced and had two houses.  I imagined what it would be like to get to spend an entire weekend at the beach, or swimming laps and going to the Nature Trail.  Of going out to dinner after that. Of watching a movie (heck, going to the movies!) without humming and Brandon's head in the middle of the screen, or having to check on him, get something for him, take him to do his toileting routine.  I wasn't totally selfish in my lusting - I wanted that for Todd too.  He has no time at all in our house, by himself.  I imagined the years added to his life if he could just have every other weekend of peace and quiet and no indigestion.

 But --- back to reality in that the entire Saturday I went back and forth to grocery stores finding ingredients for autism.  Spending money on autism.  To spend the rest of the weekend cooking for autism while in between taking care of autism.  

I love my husband dearly -- our marriage will survive -- this is simply to show the reality, the enormity, of the toll autism takes.  At least for me.  I know Todd and I have a strong marriage, more credit for that to him than me, and I'm sure the reason why we've survived as long as we have is because God blesses our marriage.  We are committed to each other - but that's not to say that even the strongest marriages with the strongest of people are shatterproof.   I was shattered.  I wanted to run.  I wanted freedom not from marriage, but from autism.  And to show the depths of autism's root in every aspect of your life, I felt that the only way to break the suffocation of autism in my life would be to leave my marriage. What kind of a society are we in where to get help -- the only way we can is to live in two houses so at least we get every other weekend off?

Autism is lifelong.  Think about the strength and perseverance these families have to endure all they do for so long?  Teachers are insane by the end of the school year -- our school year has been 21 years now with no summer break in sight!  Not even a professional day.  A WEEKEND.  OR HOLIDAY!

Think about that.....

I can always tell when it's "Camp Blessing" time.  We hit the end of our rope.  Then we get 4 nights off. Which gives us just enough of a gulp of air to go back down only to slowly drown again until the next gulp of air comes around the next year.

These people -- these people who do these surveys about marriage and stress with autism - where are they when they get the same results every damn time but do nothing with those results?

Where are these autism organizations who know the number one need is not genetic research but direct help?  That help being respite.  Away from the home respite.

My gawd, we are married people cracking under the stress - at least there's two of us.  What do single parents of autism do?

I sat there on the couch looking at my husband sitting on the other one, and I saw him cry.  We were at the, "At least I get to be home for some time without Brandon when he finally can, or does, get to school" and he said, "When.....when do I get to be in my house without autism -- ever?"  Our Pastor had given him a book -- and he was like, "When........when can I even think about reading this book?  I go to work early to work out so autism doesn't kill me......I come home and try to help with Brandon.......then I go to bed.........."

He was right.

He has all this equipment to go repelling... "When?" he asked with tears in his eyes.....  When will he ever get the chance to pursue something for him?

When will April (Autism Awareness Month) ever mean something useful to thousands of families like ours?

I know how I long to be able to do what I want to do, but at least I do have a few hours humming free while Brandon is gone. One could say that I could do "all the things" I would like to do then, but consider that we are only talking about 4-5 hours a day, and researching how to better help Brandon consumes most of that before I even realize it.  But for Todd -- when for him does autism end?  When is there non-work, non-autism for him?  Retirement you say?  Nope, no prize for you -- retirement will never come to those who have autism in their lives.  At least not our kind of 100% dependent autism.

So in the scenario of our very bad awful weekend -- what is our solution?   Our quick fix?  Where is the self-help book for respite to magically appear?  Where is the marriage seminar/enriching weekend that we could even go to?  When in reality, the opportunity to go kayaking or have a weekend off is our marriage-seminar/enrichment weekend!  That is all the "therapy" we need.

That is what real courage is. Never quitting the fight even when you know you most likely will never win. No cure to change the situation, no regular help to make it more bearable.  Courage is continuing to fight when all you want to do is quit.

So the sun went down and still no solution for us.

All there is, is a new day, continued HOPEISM, and a God-sized resolve to do the best we can in the face of never-ending autism.  Sunday Todd woke up and did dishes and shop-vac'd our house and I cooked, and cooked, and cooked.  Then Sunday night we tried to watch a movie between Brandon humming and getting into things in the kitchen.  Our immediate solution is that since we both can't do things together - that at least one of us needs to be able to have some sort of life.  Todd must find some buddies he can go repelling with, shooting with, on weekends.  I need to cook dinner later so he can have some time after work to chill before leaving one job and jumping head first into sharing in another job -- autism.  I'd like to say that I could take Brandon and go somewhere leaving him time to have the house to himself - in peace and quiet - to read his book.  But where?  Where do I go with Brandon for a day? With his sensory limitations?  His toileting needs?  His diet needs?

It's these daily challenges in "Life with Autism" that leave so many of us deeply hurt and angered when we see words like "courage" and "Bruce Jenner" in the same sentence.  When we see celebrities portrayed as heroes.  It's not courageous at all to be rich and able to buy the change you want and it's insulting to no end to be a part of a society that idolizes everyone but the most deserving of respect among us.  When we're invited to a marriage seminar put on by people who have never had to endure what we have to for as long as we must and attended by married couples who have not a clue what real marital stress and hardship is. 

I feel proud that we as a society are finally understanding the need to honor and help our veterans with healing retreats for them and their families.

The time has come to recognize the rest of the battle-weary warriors as well.

Parents of children, youth, and adults with autism.

No, I don't know how that could happen.

But I know it must.

And it can.

Churches have empty buildings every Saturday.  There are EMT's who would volunteer time along with those churches that are full of servants of every age and ability.

Campgrounds have cabins - with funding help and volunteer help from all aspects of the community, weekend respites are a doable thing.

As much as our marriages or the parent needs the respite - our children/adults need the recreation.  They need somewhere to go.  Something fun that they can do.

I just wonder how many more marriages will crumble or shatter as ours did that weekend, how many more single parents will have a nervous breakdown, - before those who can be a part of doing something about it -- before those who should be doing something about it --

Do something about it.

And in the meantime, all we can do is the best we can.  We love each other and we love the Lord.  We live, laugh, and love.

We choose happy and face autism with the courage of a soldier in battle.

And hang on to the HOPEISM that eventually we'll win.

Or that reinforcements will come......

January 27, 2015

Autism, PTSD, and me...

I was recently asked by a news reporter my reaction to a study comparing the stress of caring for someone with autism to the stress experienced by combat soldiers returning from war.

Here is the study that compared the stress levels of both groups:

Click here to read article

I was asked if I agreed with the conclusions...

I do.

Here is the news report on that article and my reply:
Fox News Report on Autism and Stress

Now before all the combat veterans go hatin' on me, let me be clear that in no way do I compare our wars.  Though I very much do consider my "Life with Autism" a war I fight daily -- it is not to be compared with being on enemy ground with your life and the life of your brothers and sisters in the military on the line.  No way.   But I am saying, we both battle the same demon in terms of ongoing, traumatic stress, and the effect it has on us and on all those around us.  I may not be dodging sniper bullets, grenades, and bombs; but I am battling seizures, illness, aggression, and a lifetime of constant supervision and care, and so very much more.  I can't say what PTSD looks like in a combat veteran, but I know what it looks like in my life, and in the life of those I know.   It is traumatic.  It's ongoing. In fact, for those like me, I would say it's more, "Continual" Traumatic Stress Disorder.  There is no "Post" about it.  My son is 21 years old. I've been fighting autism for 18 of those years.  If we're comparing it to soldiers, which that article does, my tour, our tour, is a continual one.  There have been no reprieves.  We have no reinforcements to speak of.  It's hard to explain the toll that takes.  A soldier can leave the battlefield. The battlefield may never leave them, but they can walk away from that battlefield at some point.  I have yet to be able to do that.

Think about that toll.


Eighteen years now....

My son doesn't read, write, or speak.  He has seizures on average of every 3-4 days.  Often, more often than that.  Some weeks when he's not having a seizure, he's recovering from one.  With the gastrointestinal disorders he has, we constantly battle calories and nutrition.  Special diets, special school, special everything.  There is nothing normal about our life.  Autism does not take a break or give you one.  It is a state of continual stress that like with the PTSD of combat soldiers, is hard to describe unless you are living it.  Even on the rare days where we aren't in a state of chaos or having seizures and my son does sleep, I still wake up often thinking I hear him choking from a seizure. They happen that often that I hear that awful, hideous choking sound in my sleep.  In our house we have a rule, no one screams in excitement about anything.  No one makes any noise that might sound like Brandon having a seizure...  Even those tiniest of mishaps will send us running in panic to find Brandon to see if he's ok.  That's how conditioned we are from the constant stress we live with.  It makes us unable to relate to the "real world" out there.  We are just too far removed from it.  Too war torn and battle scarred to fit in with those who live a typical life with life's typical stresses or challenges.  We no longer relate to our "typical" friends and find our best support system in our community of others who are there and live that.  I would imagine that for a veteran returning from war, much of the stress is in trying to deprogram from that life to civilian life.  It has to be an incomprehensible shock.  That is the kind of shock it is for me in trying to make our "Life with Autism" somehow mesh with -- life.  We can do nothing normal.  Anything normal we try to do, takes ten times longer because of all the interruptions and distractions.  There is no, "Yay it's the weekend, time to have fun and do things!" For us it's more, "Oh gawd, how much longer until Monday!"   The things we would like to do, are not the things our son can do and so it's a constant, stressful battle trying to mesh our two worlds -- while keeping a marriage.  Gawd-forbid if one has an "other" child as we do.  A typical child who will always get the short end of a very short stick.  Stress upon guilt-ridden stress.

Another aspect to me in how you can compare the stress but not the war, is in the lasting effect.  I'm sure a big component of PTSD for soldiers is that while they may have left the battlefield, it is still very much with them mentally.  My son, unless he is miraculously cured, will be severely affected for the rest of his life.  He will need constant 24/7 care and supervision for the rest of his life.  There will be no "golden years" of empty-nest or retirement.  I won't get to fully leave my war unless it's in a casket.  Something society has failed to see for both of us as described in the article above.

And speaking of caskets, do not think for a minute that the stress for both isn't a deadly kind of stress. The suicide rate for veterans is astronomical.  It's more epidemic than the epidemic of autism.  And the epidemic of autism is huge.  In autism, that stress is not only killing the parents, it is causing parents to kill their children!  They kill themselves because it's the only escape from the constant demands they see, and they kill their child because they know there isn't, nor will be in their forseable future, any help for them!

The question was then asked, "What can society do?"

While our wars are very different, I feel that what we need is very much the same.  Help.  Not another study as to what our stress is, how bad it is, what kind it is, --just help.  Not a pill, not a pat on the head, and certainly not your pity.  Just help.   You can't wave a magic wand and make that soldier not hear those bullets, not re-live those battles, not un-bury his brother who was killed beside him in battle.  But you can ask him what he needs help with, house, car, medical treatment, medication, counseling if that's what they need.  You ask what they need and you help them get it. You give to those who help them if you can't help them directly.

Same with us.  You can't fight our battle for us, but you can fight it alongside us.  Help us in our advocacy of what we need.  What must be changed.  You can't make my war go away, but you can help provide an opportunity for me to leave it for just a little while. Donate to those like Happy Someday who provide vacation opportunities for parents like me.  Donate to programs that provide respite for parents and recreational activities for their loved ones.  Ask what they need and provide it however you can.  If you are blessed with money, help them with something they need.  If you are blessed with time, spend time with their loved one so the parents can have much needed time together.

We need people helping people and not psychologists doing studies about whether we need help.

We need Americans to help our heroes returning from war; and we need society to help our families living "Life with Autism" have an occasional break from their war.

Written by:


Donations to help those who help our heroes:
Chris Kyle Frog Foundation

Lone Survivor Foundation

Boot Campaign

Donations to help those who help Autism Families have respite:
Camp Blessing, TX

Happy Someday

Easter Seals Greater Houston