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


Anonymous said...

Well said. I have a hard time with this. I have only one local friend who has a child with autism....everyone else, and there a lot of people we know,, just doesn't get it, and it's hard. Thankfully we don't have the seizures to deal with, but we have two (of our 5) children with autism, one is high functioning and the other is nonverbal and is also tubefed due to an issue with swallowing that started a year ago. My husband and I have been out alone together in 4.5 years, and theres nothing planned a time soon. He was just given a two day getaway by his work for us for 15 years of service and we both chuckled and said yeah right....I'm thankful for your blog, for real life, understanding, honest posts about life. A dream of ours is to someday go to Joni and friends camp, have you ever heard of that? Sounds like a wonderful time, just costs too much for us right now. How have you found out about the respite/vacation stuff you have? I don't even know how to find anything locally....feel free to email if you have time ;) I know time is not easy to come by.

Daisygirldesigns @ yahoo dot com

God bless you sister, let us remember not to grow weary in well doing! God has a plan for us and our children in all of this!


Anonymous said...

I am the mother of a 24 year old girl affected with autism and other disabilities. I know what it feels like to have post traumatic stress. She is very aggressive at times. When it is one or two days dealing with this is stressful, but by the third day my body reacts on its own self defense. If I here a noise in the middle of sleep, my body and mind start preparing to defend itself or run. Every little noise is telling my brain to get ready to defend itself. It is a 24 hours a day 7 days a week stress that never ends.

Erin said...

My four year old son has PTSD from dealing with the rages and stress from his two older siblings. To date there have been zero studies on the neurological effects that special needs siblings have on their neurotypical siblings.

I am quite sure I have PTSD as well and am currently looking into trauma therapy for myself. It's just all so exhausting.