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.

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

January 11, 2015

In the Light: Christmas in the Log Cabin...

I waited for the CD that would contain what I was hoping would be a glimpse of the magical, miraculous Christmas we had.  It's not like me to put my HOPEISM in things of this world, but I have to admit, as I stalked the photographer's page, I was really hoping the pictures would turn out good.  After all, the third time is a charm, right?  I rescheduled that photo shoot three times before it finally happened on the third try.

In our "Life with Autism" it takes much effort to do the smallest of tasks.  So I guess that's why these photo sessions are so important to me, we just have too few of them.  But the ones we have managed to do, seem to take on a theme centered around an event or season in our lives...

The one before Matt would leave to Boot Camp...the beginning of Matt's Navy journey, his marriage journey, and our "Camo" journey as proud Navy parents.

And this one that I call "Praising Him in the Storm" ----  the song by Hillsong, titled, "Stand."

You stood before creation
Eternity in your hand
You spoke the earth into motion
My soul now to stand

You stood before my failure
And carried the cross for my shame
My sin weighed upon your shoulders
My soul now to stand

So what could I say?
And what could I do?
But offer this heart, Oh God
Completely to you

So I'll walk upon salvation
Your spirit alive in me
This life to declare your promise
My soul now to stand

I'll stand
With arms high and heart abandoned
In awe of the one who gave it all

I'll stand
My soul Lord to you surrendered
All I am is yours

And I remember that indeed being a season of standing tall with arms high in awe of everything really, just completely surrendered to the one who gave his all for us.  Surrendered to knowing there is purpose and praise in all things....

Then this year... in Matt's Navy journey it's hard to plan anything, but we found ourselves blessed by Team Guppy 1.0, 2.0, 3.0, my mom, and my brother and his family all together for Christmas.  So I called the photographer and asked her to come to our Log Cabin and capture some of our chaos.   It almost didn't happen. It was so cold, and so rainy, and we rescheduled a couple times for weather and other reasons.  But on the last attempt, we finally did it.    I knew before any picture what the theme for me would be.....  Light.  It has been such a dark season for some of us, that I just wanted to capture light.  I wanted God's love to shine through satan's darkness.  That we were all together this particular Christmas was a miracle in itself.  It mean restitution for some of us.  The birth of "the finger" greatly contributed to restoration.  No, not that finger, but I'll leave the rest of that story to pique your curiosity for perhaps a blog to come.   Suffice it to say, it was one of the merriest of Christmases I can remember and I am so thankful that my mom was at the heart of it.

I wanted to capture this picture in this way as a reminder that in any darkness, there is still light.  In any hopeless situation, there is hope.  Through any brokenness, there can once again be wholeness.  In this picture represents many different people in our family, many who have gone through such struggle.  We have one beginning their Olympic journey, another giving all they have in pursuing their Navy journey.  We have someone just about to cross the finish line of their college journey.  We have Brandon and our "Life with Autism" journey.......   This picture represents so much in challenges and disappointments.  Some I have shared about, some very private.  But what I wanted this Christmas, this photo session to capture, is the light that is within each of us through Christ that can shine through any darkness.  The light that in Team Guppy --- will NEVER QUIT.
The chorus of the song by DC Talk, "In the Light" is what was running through my mind when I asked all of us to hold the lights for this picture.....

I wanna be in the light
As you are in the light
I wanna shine like the stars in the heavens
Oh, Lord be my light and be my salvation
Cause all I want is to be in the light

Oh it was cold and dreary and rainy that day, much like many days in my "Life with Autism."  But the HOPEISM I do my best to live by is that even in the darkest, deepest pit, there is still light if you choose to see it.  Christmas is my favorite time of year because of how I love all the lights and all that Christmas is about.  The magic in believing in Santa - and oh how I believe!  How God still performs miracles, and oh how I believe in that because of how we've seen them in how Brandon survives each seizure.  Because of our Savior and the Birth of HOPEISM and how if you reach out to embrace it and wrap yourself around it, you will never truly be in darkness.  And I think that's what has made this Christmas so very special to me.  There has been such darkness all around me.  So many seizures.  So many disappointments.  But at the same time my HOPEISM has brought such light.  Such joy.  Such peace.

It was a circus the day we did those pictures.  It was chaos.  We didn't get to go to that perfect spot I had planned, it was too wet and rainy and cold.  We didn't get the absolute perfect pictures that I imagined, though we came darn close.  But we captured the most important thing of all......light.  The light of love, of laughter, and of our lunacy.  Ok, my lunacy in making everyone wear Santa hats under protest.

What you can't see is the vice grip Todd has on Brandon's hands.

The moment Todd let go of Brandon's hands......

The light that is family, faith, and fellowship.  Because in the end, it's not about any one of us, who we are, how perfect we are, whether we've achieved our goals or not.   It's about the light that shines within us, and how we use our life, our light, to shine through our darkest of nights or in being a light to others through their darkest of days.  

I love how Jenifer captured this picture.  The light of the candles is what you see.  We are all there around that table, but all you see is the light from the candles.  We are merely shading in the background of God's canvass.  You don't see us, just the light.  And I guess if I were to have a HOPEISM for this New Year -- it would be just that...

That you don't see me, you see light.  His light.  His perfection.  His HOPEISM.

And at Christmas, especially for me for this Christmas,......oh what a gift that is.  To see light where there is none.  It's the legacy I want to leave behind for my son.

There is a candle in every soul
Some brightly burning, some dark and cold
And there is a spirit who brings a fire
Ignites a candle and makes his home
Carry your candle, and run to the darkness
Seek out the helpless, confused and torn
And hold out your candle for all to see it
Take your candle, and go light your world

Frustrated brother, see how he's tried to
Light his own candle some other way
See now your sister, she's been robbed and lied to
Still holds a candle without a flame
So carry your candle, and run to the darkness
Seek out the lonely, the tired and worn
And hold out your candle for all to see it
Take your candle, and go light your world

'Cause we are a family whose hearts are blazing
So let's raise our candles and light up the sky
Praying to our Father, in the name of Jesus
Make us a beacon in darkest times
Carry your candle, and run to the darkness
Seek out the helpless, deceived and poor
Hold out your candle for all to see it
Take your candle, and go light your world

Thank you Jenifer, of Jenilee Photography, for capturing our crazy, mad, wonderful Christmas.