The Angry Family...

Today is Sunday.  Last night I was up all night waiting for and this day.  I sat at my desk all morning in anticipation of Brandon waking up.  Would he, or wouldn't he...

For the last four years my sweet son who is significantly affected by vaccine induced autism, gastrointestinal disease, immune dysfunction, and a host of other things, has also battled relentless non-stop seizures.  Four years we've lived through those with Brandon.  Four years of praying, crying, begging the medical community for the help it knows not how to give for this new man-made disorder called autism.

But today, Sunday, with the help of a doctor we pay out-of-pocket for, would be fifteen days seizure free.  We haven't had that in quite a while.  Once so far this year we've had 28 days, but not since March have been been able to get close to that mark again.  Brandon's immune system is just too weakened from numerous assaults and numerous years of neglect by the very medical community who created his autism with their vaccine spree equal only to our Governments spending spree.  I sat at my desk with Brandon asleep down the hall....waiting.  Typically his seizures occur upon waking, which is why for the past four years, we dared not wake him.  Not to be on time for school, to be at an appointment, to go to church, -- nothing.  He was having enough seizures other times of the day, we dared not do anything to increase that number.  We have added that as yet another thing autism demands that we must not argue about, because as we have learned, in those instances, autism wins, leaving Brandon to pay the price.

Then I heard it, his feet hitting the floor.  No, not in a seizure, but in waking up.  I grinned so wide.  I thanked God so greatly.  He did it.  Made it half a month seizure-free.  God did it, Brandon did it, his doctor who is 'in it to win it' did it.

This day was a day to rejoice.  Finally, tears of joy for however long they last.  Tomorrow, he can have a seizure. I can't worry about that.  I'm too excited about today's victory.  If we made 15 days, we can make 20.  If we make 20, we can equal that 28 day record.  If we can do that, we can do just two more days and make a month.   I live my "Life with Autism" seizure-free day by seizure-free day.  Seizure-free record by seizure-free record.

  Hopeism by Hopeism.

Which is why my jubilation of joy in today's record, today's hard fought record for Brandon, for his doctor, for us, was marred by having had the unfortunate displeasure of reading yet another blog trashing those in the autism community who have done, who do, some pretty darn good things for autism.  For my son.

After I read the blog, I was so crushed, so disappointed.  It was like the fourth or fifth such blog from this individual on a seeming vendetta in public.  I've read them and can make no sense of it, except that it creates further divide in a community with way too many divisions already.  I don't want to make sense of it either.  I am too busy working each second of each day trying to hit those seizure-free milestones.  Trying to reclaim what they took.  They who are outside the autism community, not they who are inside it.  I can't believe we've slain all the jabberwocky's there are to slay outside the autism community, to have time to behead anyone in the autism community.

I look back at my autism journey with my soon-to-be twenty year old son, and I think of all who have helped me get him to where he is today.  Who has helped me most.  And it's been the very people who have been trashed recently.  If it weren't for the editors of Age of Autism I would have never known about Dr. Wakefield's work and Thoughtful House Center for Children where I scraped my pennies for months to drive my son there for a scope. A scope that changed his life, and ours.  Finally, someone saw very real medical issues that weren't called, "It's just autism."  Finally someone treated our son medically.  Finally, after a decade, our son didn't live his days diarrhea episode by diarrhea episode.  If it weren't for Adventures in Autism I would have never known all the information I know about vaccine links.  I would have continued to blindly believe my doctors who said there was no link.

I don't care who didn't do what or who didn't play fair with who at the last hearings on autism.  They were hearings on autism that we so desperately needed.  I didn't get to speak on behalf of my son either, and I guarantee that what I would have had to say would be just as controversial as anyone,  but I'm not blaming anyone.  I made sure his voice was heard in the letters I wrote to those in that committee.  We all have that opportunity.  The opportunity to beg of them to hold more hearings, so more can have the opportunity to speak.   Not nit pick and blame and point fingers for whatever reason.  I sat glued to my computer screen all day watching those hearings.  I didn't see anything hijacked.  What I saw was a hearing on autism.  What I heard repeatedly was members of that committee asking about the autism/vaccine link.  Asking questions of the CDC that the CDC could not answer.  I whooped and hollered all day watching that.  I cried tears of joy that maybe, just maybe we were getting somewhere.  But ever since then instead of capitalizing on that momentum, I've unfortunately read negative blog after negative blog about it.  And let me tell you, if all of that makes those members of Congress not want to mess with it again, I'm going to be one very angry warrior mom.  How dare anyone do that to our kids.  My son needs these hearings to happen this November.  My son needs everyone in our community and who claims to write about it, serve it, investigate it, and speak for it, - to be on the same team of us versus them.  Not us versus us.  When we win that fight, then by all means fight each other.

I am a veteran in this "Life with Autism" who has seen it all so to speak, yet it still stuns me when I see us acting as "The Angry Family" as portrayed in a story written by a little boy in Everybody Loves Raymond.

That's how they'll see us.  Those in Congress who must help us.  Anyone really.  They'll only see us as the angry family and not want to be a part of that.

Watch this video clip below: 
 Click here for video 

That is us.  Today, when I should have been rejoicing all day, I was instead equally saddened by that blog.  That hurtful, hurtful blog against those who have done the most to help us.  And when you think at how few actually help us, it's even more heartbreaking.

After that clip, in that episode the family met with the Reverend of their church.  They all sat there and blamed each other for why the little boy wrote about the angry family.  That is us.  Everyone blaming each other, except for who is the true blame. Them.  Not us.

The Father sat there and listened to them all make fools of themselves, then very calmly said this:
"Nobody wins in this game.  Least of all the children, which is what I got out of this book - The Angry Family."  He then pointed to each adult in the room and said, "It's not about you or you or you or you, or even you.  It's about this little guy and his sweet simple way of giving you a message."

My son is that sweet little adult guy who is silently screaming that message.  Begging us to help them.  And how do we answer?  By hurting the few who actually have helped.  Who continue to help.  I'm reminded of a few lines of my favorite song, and how I've prayed all day long that our community has something better for my son while he's alive... That it's not only until this generation has died, drowned, or have been murdered by their mother's when people stop listening to their pride and start listenin' to the plight of the 1 in 50...

A penny for my thoughts, oh, no, I'll sell 'em for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'

Holding Unswervingly...

In church this past Sunday our Pastor was talking about Faith.  And as typically happens, I relate things to my "Life with Autism."  I found myself really inspired by one scripture in particular that he shared.  Hebrews 10:23 which says, "Let us hold unswervingly to the hope we profess, for he who promised is faithful."  
Hold unswervingly.  I really like those two words.  One of the most often asked questions I get in e-mails from parents when they find out how old my son who has autism is, and how much we've been through, -- is "How do you stay positive?  How have you coped so long?"  By holding unswervingly to the HOPEISM I believe in and profess because he who promised is faithful.  That verse, Hebrews 10:23 is my HOPEISM, it's the NDCQ I live by.  It promises that God will meet my needs if I stay the course and persevere.  It doesn't promise that it will be easy.  It doesn't promise fast results.  It simply promises that if I hold unswervingly to hope, he who promised will be faithful.

Do I get tired of waiting for those promises?  You bet.  I am tired.  I am weary.  I am simply worn out from life with autism.  But I don't see any other option than to hold unswervingly.  It was really interesting to me to hear our Pastor share how Noah waited 120 years for the flood to finally come.  He was preparing, building, waiting, for 120 years.  With my son, I've been praying, waiting, advocating, fighting, caring, sharing, appealing, writing, researching, treating, going broke, - for seventeen years which at times has seemed like a lifetime.  Until I heard about that 120 years!  Noah could have given up, but he didn't.  He held unswervingly.  When Jesus was in the desert sweating blood, knowing what was to come, he could have given up, but he didn't.  He held unswervingly.

My Brandon... I just can't comprehend the things he has felt these past seventeen years.  Pain, frustration, fear, sadness, confusion.  Yet he never quit.  No matter what he's been through, he is still happy.  He has yet to let those things defeat him.  When he feels pain, he gets frustrated, but then in the next moment we get a rare Kodak moment of a smile.  Me, when someone doesn't answer an e-mail or I feel betrayed by something or someone, I brood about it for hours or days.  But not Brandon.  He has no choice but to hold unswervingly whether he knows what that means or not.  He can't quit his autism, which is why I won't ever quit helping him overcome it.

When I'm tired, I will hold unswervingly.
When I'm frustrated by lack of progress, I will hold unswervingly.
When I'm heartbroken by seizures, I will hold unswervingly.
Through fear of the future, I will hold unswervingly.
Through obstacles, advocacy, challenges, and disappointments, I will hold unswervingly.
When my prayers aren't answered in the way or in the timing that I want them to be, I will hold unswervingly.
I will simply hold unswervingly to HOPEISM.

I liked the next few verses from the above scripture as well, which said, "And let us consider how we may spur one another on toward love and good deeds.  Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another -- and all the more as you see the Day approaching."
 
As it applies to "Life with Autism" -- let us also hold unswervingly to one another as we spur each other on in our autism advocacy. Let us never quit going to each other for fellowship and friendship.  Let us encourage one another -- and all the more as we see the day of reckoning of what was done to our children approach!

To holding unswervingly!
HOOYAH
&
HALLELUJAH

Finding strength in the suffering.

I love this picture and quote from Forged Clothing. 

Sometimes we're tested. Not to show our weaknesses, but to discover our strengths.

-Unknown

I'm not in the military, and I don't know what it's like to do log PT as in the picture,  but I love to apply the principles and beliefs of those who created Forged and who their clothing is in honor of and helps support --to my everyday life as a "Warrior Mom of Autism."

I had occasion to visit with a friend over dinner recently, and something she said has really been tugging on my heart.  When I saw the above picture and quote on my FB news feed, I was reminded of what she had said....  (I love Christian friends who make you think deep thoughts..... Well, deep to me.)  She said something to the effect of, "We want to be like Christ, but we don't think it means we might have to suffer like Christ did...."   I didn't quote that exactly, I don't remember her exact wording.  I just remember being very moved by the implication.  We want to be like Christ -- but not the suffering Christ.  We would rather be like the "Don't Worry Be Happy" Christ as the world tends to portray him at times.  Again, I'm no theologian, but I don't recall God ever saying he came so life would be easy, or that if we did good, the world's fortune and prosperity would come to us; but rather that by following him we would receive faith, hope, love, grace, and mercy.  And that he would see us through --- to eternity.  Many days our "Life with Autism" has been nothing short of suffering for my son, for me, for our family.  Some days the HOPEISM of God's promises is all that has (and does) see me through. 

I'm currently going through Experiencing God Bible study.  One of the pivotal points of the study is coming to a "crisis of belief."  I remember vividly what mine was from the last time I went through this study....  It was during a horrific seizure cycle when Brandon would have atonic seizures. He was falling all the time.  Once when he fell he broke his ankle.  We didn't know that he broke his ankle until I saw him on the trampoline jumping with an ankle the size of a softball.  You've never lived as an autism parent until you have naively allowed a cast to be put on your son who has severe sensory dysfunction.  By the second night, on a Sunday when the doctor's office was closed, my husband and I found ourselves sawing the cast off with a pocket knife and pliers, chip by chip, using anything that would get it off our screaming son who could not handle it being on not one second longer.  During that seizure cycle he was falling against counters, once hard enough to need stitches in his eyebrow.  I know I'm not supposed to swear, but I do swear that the emergency room doctor that morning was an Angel.  How he got eight stitches in Brandon's eyebrow without his eye ending up as a pin cushion, I'll never understand.  During another fall he broke his clavicle.  The third doctor visit and x-ray was the charm in figuring that out.  I kept telling the doctor something was wrong, he was leaning funny getting in bed, but we couldn't figure out what it was.  Arm not broken.  Shoulder not broken.  Ahhh, the joy of having a child who can't even tell you where it hurts...   Finally, clavicle x-ray...bingo! We prayed and prayed.  Oh, how we prayed for those seizures to stop.  For them to not take from our son what was his best and brightest most perfect asset -- his smile.  His perfect white teeth.  Oh, how we prayed for him to not have a seizure, fall, and break his teeth.  For the one thing on his body that could not heal -- to be spared.  I guess I in particular prayed the hardest for that to not happen...  His smile was the only thing that could shatter his autism.  The rare times he would smile, oh my goodness, those were the times you couldn't see autism.  The times I simply saw my Brandon.  And that meant everything to me in our world that was slowing being torn apart by autism.

Then it happened.  I knew what happened the moment I heard the sound.  We lived an arm's length from Brandon, if not an arm locked around Brandon in case a seizure hit.  The one time I wasn't holding him or within arms reach to catch him, a seizure hit and he went face first on my tile floor.  I still have post-traumatic-stress from that.  The sound, the sight, the shock. Neither will go away.  I can't imagine how much more profoundly multiplied that is for those who have been in military combat...  Oh sweet Jesus, be with each of our military men and women who go through that... That was my crisis of belief.   Through my tears I screamed over and over, "Why God, why?  Why would you do that?" Oh, I was angry at God.  Livid.  I hated God in those moments and I didn't understand how he could do that to my son.  How he could let satan win like that!?  But even in that, I remember another question I knew I had to ask, and answer, before I let the anger of my flesh penetrate to my soul.  I had to ask myself, "If the thing that I prayed for the most to not happen, happens, will God still be God?"

I could barely hear myself choke out a whisper of a .......yes. God is still God even if the thing you prayed for the most to not happen, happens.  God is still God when prayers aren't answered in the way we asked them to be.  God is still God in the suffering, the betrayal, the challenges, the silence, the autism, the anything.

When we make the choice to give our lives to Christ, we need to understand and accept that it might also mean we have to suffer as He did.  Perhaps not in the way he did, but still experience some level of suffering.  Like the quote, I don't think He allows those times to expose our weaknesses, but for us to realize what strength we can find in Him. That gives me such joy. And it's that joy that I respond with when satan snickers and sneers at me with each time Brandon has a seizure, each of the times his teeth were shattered and his smile ruined.  Joy in knowing that even though I do not understand it at all, nothing happens without God knowing. There is a purpose and reason in everything.

While I would like "Life with Autism" to be a bit easier -- I do realize that I am who I am more from suffering I've been through than from the good times I've enjoyed.  Brandon is the warrior he is because of the battles he's survived.  If suffering draws me closer to God, then that's where I want to be.  Gulp.  I don't want to live in ease which leads to complacency.  I don't want to just get by.  I don't become stronger there.  I become stronger through the things that draw me closer to Christ.  And if that means suffering...... Aye...

That's where your faith is tested.  I don't speak for anyone who has gone through the training that picture portrays, but I would imagine those who made it through, didn't do so without a bit of suffering.  A whole heap of suffering.  But to get what they wanted, to pursue their "prize" so to speak, they had no choice but to go through it, and be all the better for it.  That's where I want to be.  In the pursuit of the prize of drawing closer to Christ.  And I just don't think you can get there, truly there, without a bit of hands on suffering.  In that picture above they are doing "Log PT."  I was reading online about that, and there is a famous log they used (not sure if they still do) that was named Old Misery.  She's a 300 pound beast.  It seems those who fail to work together as a team in lifting the "lighter" logs, are sent to Old Misery to work together lifting that as punishment.  It says that carved in Old Misery are the words, "Misery Loves Company."  I guess the "company" is in who misery defeated or who defeated it!  In who passed the testing of resolve.  Who was made weaker by Old Misery in perhaps quitting, or who discovered strength they never thought they had, in surviving it.

Some days there are many aspects of my son's autism that illustrate that.  His "Old Misery" - not in punishment but in terms of "cross to bear" is his seizures, his GI Disease, his communication barriers, being non-verbal, his immune disorder, methylation issues, etc.  Yet what those things bring out in him, and us, are determination, courage, strength, endurance, perseverance, patience.  Those men doing that training in the picture, don't get to become what they're training to become without great cost.  Without great suffering.  But I bet if you would ask each one who endured, who maybe survived Old Misery and much, much, more, if it was worth it, if they were changed for the better, made stronger, and for some who are Christians, stronger in their faith --- they would agree they were.  They may have hated every exhausted, cold, wet, sandy, blistering minute of it, but they were made stronger for it.  There is no way they could be prepared to do what they might have to one day do -- if they didn't go through the suffering in training first.  I'll never know what having to lift Old Misery or any of those logs felt like, but I do know that at times it's felt like I was made to carry my own 300 pound beast of a cross.  My Christianity is no different in that respect. I am training to be more like Christ and it isn't going to always be easy or fair or without suffering.  But it will be worth it.  God promises that.

I'm not sure what my crisis of belief will be this time around in Experiencing God.  Perhaps it will be in resolving how much I hate the suffering parts of "Life with Autism" with how much I love the joy and HOPEISM parts I've experienced in "Life with Autism." Whatever it will be, all I can do is each morning keep on singing the song, "10,000 Reasons" by Matt Redman....

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes
You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

And as far as "Misery loves Company" part?  For me I am so very thankful that in my "Life with Autism" --- through any suffering I must endure, I have the most awesome sisterhood of Warrior Mom's (and a few Dad's) one could ask for.  To laugh with, cry with, be my snarky self with, pray with --- and grow stronger through the trials with.  The men in that picture, those who endured, who got through it, are brothers for life because of the suffering they went through together.  Equally strong yet in a different way, is that sisterhood of Warrior Mom's and Dad's.

To any of my sisters (and brothers) in Christ going through times of suffering, the lyrics of this song are for you...

The Servant Song, by Marantha Singers

Brother, let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too.

We are pilgrims on a journey
We are brothers on the road
We are here to help each other
Walk the mile and bear the load.

I will weep when you are weeping
When you laugh I'll laugh with you
I will share your joy and sorrow
Until we've seen this journey through.

When we sing to God in heaven
We shall find such harmony
Born of all we've known together
Of Christ's love and agony.

Brother, let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too.

When suffering is unavoidable, the joy of the Lord becomes my strength.

I just love the HOPEISM of that.

HOOYAH!