Life with Autism

  • I am..... - I am… I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis of (child’s disability) - I looked at it...

Thursday, December 24, 2015

Celebrating HOPEISM

Talk About Curing Autism ( click here for TACA FB page ) has been featuring pictures of those who have autism on their FB page, along with something their family is celebrating about them or their accomplishments. It is really touching to read and sure puts "Christmas" and "Christmas Gifts" in perspective. The families featured - their Christmas wish lists so very different than typical families. The things they celebrate, so very humble. As much as I hate, hate, hate, LOATHE, autism, I love the things it has taught me about life. Christmas is the hardest time of year for us because of autism. Nothing about "Autism" can appreciate or tolerate "Christmas." My son has no imagination to believe in or watch all the classic Santa movies. Visiting Santa at the mall one year resulted in Santa most likely being forever infertile from the meltdown! Brandon has no concept of gift list and at present straws are the only toys that would even be listed if he could write.... Parties at other people's house? No thank you. Holiday treats? Only if GFCFSF, Paleo, non-GMO, no sugar, artificial anything, no preservatives, and it must comply with the ketogenic diet. Hence why we don't get out much at Christmas. Our life with "true autism" can tolerate nothing about Christmas. I worked very hard to even be able to have trees and decorations for this season. Typically my house is bare all year long. Yet despite all of those issues, this is the most wonderful time of year for me because of how Brandon has taught me how to cherish Christmas. The true meaning and spirit of Christmas. Which is found in none of those things listed above that Brandon cannot tolerate. It is found in the simplicity of Bob Cratchit's family sitting in their humble house that wasn't filled with gifts or food, but rather overflowing in love. It is found in little Tiny Tim, "the least of these", who toasted Scrooge with a smile on his face and who in church said these words that Mr. Cratchit shared with his family: "He hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see." When I saw what Talk About Curing Autism was doing, in highlighting the things parents are celebrating in their child this Christmas -- I knew which picture of Brandon I would pick. This one. Our "celebration" is very different than what you will read from others. In our particular brand of "Life with Autism, Seizures, and a side of Trauma" -- we celebrate not any one particular victory, but rather HOPEISM. Brandon still has significant daily struggles with autism, seizures, and the trauma they bring to his body. We have tried many things that have not healed him. We have gone through many doctors who have not helped him. What we do celebrate with him this Christmas and each day is how he survives. How despite all he must endure, he still smiles. Oh how we simply celebrate his smile this year! How finally after more than a year of searching, we found a dentist who would restore that smile that shines so brightly the rare times we see it. We celebrate our never quit warrior mentality in trying to help him that is driven by the fact that Brandon has no option to quit his autism. We celebrate how we are still standing despite how very many times autism and seizures and trauma have tried to knock us down for the count. We celebrate the one autism doctor we have who has not abandoned us when the going got tough. Who is still in it to win it for Brandon despite how many times we have lost. We celebrate the friends who have stood by us and who have not abandoned us. We celebrate all who work tirelessly and at great personal sacrifice to share the truth about autism. We celebrate all who continue to pray us through. And tonight, on Christmas Eve, we will celebrate those who make it a tradition to come to our home to sing Christmas Carols for us because it is simply too much for us to attempt a Christmas Eve service at church. Much like what little Tiny Tim was sharing about in going to church on Christmas -- we simply celebrate Brandon and how he teaches us the true meaning of Christmas, and we celebrate the HOPEISM that Christmas brings. How Jesus' Birth on Christmas Day gives us HOPEISM in knowing that even though we have not seen those prayers of healing answered, nor any one great accomplishment in Brandon this year other than surviving more seizures than we care to tally, --- that those prayers will be answered. Those accomplishments will come. Jesus can make the lame walk, the mute speak, and the blind see. He can heal autism and stop seizures. We celebrate that we will never quit believing that.

Friday, September 25, 2015

Run toward the Roar

My friend Laura has a blog titled, "Between the Sacred and Mundane."  I remember the first time I read those words being so very moved by them.  I had no idea what that phrase meant, but it seemed to have such great meaning.  In fact, on my "Life with Autism" blog, I blogged about the title of her blog and what it meant to me in my "Life with Autism."

Recently I read a book titled, "Through the Eyes of a Lion" by Levi Lusko.  It too moved me as no book has in a while.  I guess because his book was about loss.  The loss of his young daughter to heaven, the loss of my son to autism while still here on earth.  It wasn't a "feel good" book in the typical sense of the word. It was a real book, of real emotions, of real hurting.  A book my reality could relate to.

In reading his book, I have come to better understand the title of my friend's blog title.  In his book, he speaks of the "space between promise and fulfillment.  Living with your heart set on heaven but your feet still on earth is not easy."  
The sacred of heaven.

The mundane of this earth.

No matter how far from actual mundane to us our trials are, they are still simply mundane compared to the sacred of heaven.

I try to keep that in perspective, but this has really solidified that for me.  How that space between promise and fulfillment is not just an endless time of trials, of waiting, of wanting.  How that space between the sacred and mundane is not without purpose.

He speaks of that space as simply Saturday.

In the time between the brutal death on the cross on Friday...and the glorious resurrection of our Savior on Sunday.... there was Saturday.....  A day of "crushing disappointment when promises had been made but were not yet fulfilled."   I have been in that place quite often before reading this book and actually having a name for what I would just call, "wth?"  It's simply Saturday.  The day where Mary was in total dismay at what was done to her son, but who knew the ultimate ending of that very bad awful chapter of the book.  To me, Saturday is this time where we have prayed all the prayers we know to pray, but they have yet to be answered.  Friday gives us the faith and HOPEISM to pray them because we know Sunday will come when God promises to fulfill them.  Answer them.  But the waiting........the endless Saturday.   If the disappointments of Saturday were an endurance sport, I would be an Olympic Gold Medalist....  If the valor with which Brandon warriors through his Saturday's were recognized, he would be given the Medal of Honor.

The things I most love in Levi's book, are those simple sentences that seem to put our Saturday in perspective.

Things like --

"This is how God rolls.  He puts to use what he puts us through."

"Suffering isn't an obstacle to being used by God.  It is an opportunity to be used like never before."

He illustrates that with Acts 9:15-16 where he shares "There are two elements we must not miss:  (1) Paul would be used powerfully, and (2) Paul would suffer greatly.
Saturday is that in between.  Where if we would remain hopeful and steadfast, God promises to give us beauty for ashes, strength for fear, gladness for sorrow, and peace for despair.  Where  if  we choose to forge forward and not retreat, we can turn our mayhem into our Ministry.

In our "Life with Autism" we have suffered greatly.  All of us have.  But I do see from reading this book how we have also been used powerfully in sharing our HOPEISM, in running this race with peseverance.  Perhaps we've not run a very pretty, perfect, or graceful race, but we've never quit.  And I think that's what matters most.  We are crushed by the "Life with Autism, Seizures, and a side of Trauma" of Friday, we are weary of the disappointments and defeats of Saturday, but above all, we keep running to the roar of the HOPEISM Sunday brings.

I think that's why I was so moved by this picture I chose for this blog.

It represents the darkness of our Saturday.

And the light of Sunday to come.

In this picture is our son.  Our twenty-two year old son who has been living with autism since he regressed at two years old.  Our twenty-two year old son who has been living with seizures on and off since age nine.  Constantly with no significant reprieve since August 2010.  In this picture is our son who for sensory reasons needs to be in that familiar chair each time he is made to endure an unfamiliar situation.  In this picture is our son who cannot read, write, or speak.  Who has more ICD-10 codes than any human should ever have in their entire lifetime.  Who is going for yet another dental sedation procedure to have his teeth fixed yet again from yet another fall during yet another seizure.  Who at this very time is sitting in that stroller with a fractured in three places collarbone from one of those yet another seizures.

In this picture is a faithful father who has known the loss of a child.  Perhaps not to heaven, but to something possibly more hellish.  To every day love with the fierceness of a lion the boy he sees, but to know each and every moment of each and every day the boy who could have been.  To have to take him to an operating room for a procedure most children can do in a simple dental visit.  Taking that walk beside him down the hall of a hospital instead of ever walking with him down the aisle of his wedding.

As I stood there in the hall taking that picture of them going into the operating room, I couldn't help but be in total belief of that all too familiar scene before me.  Of all he has gone through, is going through at present, and watching him on his way to endure more.

I don't know if there are words to truly convey the impossible pain of that reality, which is another reason I love Levi's book so much.

This simple statement ---

"The more impossible your pain, the more incredible the power he will bring out of it."

This picture represents that to me.  Just knowing all our son in that picture must go through, must feel that we don't know about, and seeing how bravely he endures.  How deeply he trusts.  Just knowing how many times we've wanted to just quit, but didn't.  How many times we've had no choice but to trust, and how many times God has faithfully delivered.

"God always grants incredible power to those called to face impossible pain."

God has always been faithful.  That Brandon is even alive, is our greatest testimony in that.  There is purpose in his journey whether we understand it or not.   If we've learned anything at all in our Saturday, it has been that.

I don't know how long we'll have to continue to muddle our way through this mess, mayhem, and mundane of Saturday  --- but I know that it will not last forever.

The Sacred of Sunday will come.

When those small victories and miracles and precious moments of joy we have been blessed by in our Saturday - will pale in comparison to the celebration and healing of Sunday.

Until then --

"Run toward the roar with all your heart until you stand before him face-to-face." 

That is what this picture represents to me.

How no matter what we must face, Team Guppy will face it together.

We will run toward the roar.



Thursday, July 30, 2015


Today was a day of reflection.

I tossed and turned last night at one part of a conversation my husband had shared with me from the day before.  He was speaking with someone trying to work some things out, and in the middle of that conversation, the person said, "We have ambitions....".  Nothing more was said in explanation of what those ambitions were and what place they had in the conversation, and the conversation I guess resumed with the topic before that simple statement was shared.

But I've thought about it ever since.

"We have ambitions."

Knowing this person, I can say with a relatively secure confidence that those ambitions revolve around status, income, travel, and early retirement.   Heck, if I weren't in the position I am in, with "Life with Autism" -- those would have been my ambitions too.  So while I can't fault that person for that, I can reflect on what I have learned.  How I have been changed by my son Brandon and his severe vaccine injury.

It was sad to think though, what my husband might have thought if he could freeze the conversation after that remark.  At what he would think his ambitions were if not for our life with autism.  I'm sure he could have come up with many ambitions, none of them including carrying his limp son upstairs after a seizure, shaving that twenty-two year old son, or assisting him with toileting issues.  I'm sure they would be to work out for pleasure, and not for the sole purpose of living as long as he can to care for his son. Perhaps to have the money he earns go for Brandon's college and not lifelong care, eternal medical bills,  and a myriad of autism expenses.  To be able to use some of it for a vacation to the lake to kayak, let alone world travel.  Retirement at any point, now there's an elusive ambition!  

I can't even go there to think what my own ambitions might have been in another world....but I'm sure getting hate mail from vaccine trolls wasn't on the list.  I'm sure banging my head on my desk daily in total disgust at mainstream doctors wasn't on that list.  And I'm for darn sure missing most appointments I dare to schedule because of vaccine injury seizures wasn't on that list!

I woke up with all those thoughts of the day before and those three simple words that so moved me: we have ambitions.  My ambition on this day, was to get Brandon to school on time for us, which is an hour and a half late. Then I would go swim laps.  It's a luxury for me to get to do that.  Because of seizures, I don't get to very often.  But then as Brandon was standing at the kitchen counter eating a piece of his breakfast, I turned from making his lunch just in time to catch him as he was falling backwards.

And with that, sitting on the tile floor in the kitchen waiting for the seizure to subside, went my ambitions for the day.  Since he had fallen in the kitchen, I could only bring his gymnastics landing mat in there and make a bed for him to sleep off the seizure.  My office is upstairs, so every ten minutes or so I would go down the stairs to the landing where I could see him in the kitchen and make sure he was still sleeping, still breathing.

I was feeling pretty bummed that I would miss getting to lap swim, again, but then as I looked at him laying so innocently on the kitchen floor, I thought again about those words, we have ambitions.

I smiled.

Right there in the picture before me, was my ambition.

Where I once had worldly ambitions, I now have more grounded ones.  More purposeful ones.  I wake each day and do all I can to right the wrongs that have been done to my son.  Speak truth in a sea of lies.  Help others in my autism community, encourage them, inspire them, advocate with them.  Instill NDCQ in them!  Give hope through my HOPEISM!   I spend my time seeking ways within my means to help my son be the best he can be. The most independent he can be.  When I think that isn't enough, I look at where I was, who I was, and where I am now and who Brandon has forged me into becoming --- and how it is more than enough.

And I think that more than any ambition I have in helping my son have more good Brandon days than bad autism days -- is the thankfulness I have in the ambitions of others.  Those whose ambition it is to help those like me.  No great profit, no lofty titles, no recognition.  Just a desire to help others who need it most.  The desire to give selflessly of their time and money instead of working toward profit and prestige.  Sometimes in the enormity of autism, my appreciation of that gets lost.  I get so wrapped up in all the worldly ambitions I can't achieve, and forget what it really is that matters.

And on the days when my lofty ambitions of bringing down the vaccine industry and seeing the corruption of the CDC called out in Congressional Hearings and defeating Nazi-like vaccine bills fail, and I don't make it to lap swim or anything else I had planned, my greatest ambition will be to simply be there to catch my son should he fall.

I think Erma Bombeck said it best with one of her last quotes.  She was speaking of deeds, but I will insert the word ambition...

My ambition will be measured not by my youthful appearance, but by the concern lines on my forehead, the laugh lines around my mouth, and the chins from seeing what can be done for those smaller than me or who have fallen.

Those other ambitions I had, even if I could accomplish them, are but dust.

These ambitions, are forever.