How safe are you?

Friday, Britton was out of school.  He's an early riser, and it was only 75 degrees, so we decided to go for a bike ride.  It was a really awesome ride, and we were enjoying ourselves.  I noticed that lots of people walking and riding were smiling and waving at us.  I can't really see what he's doing back there, but I figured he must have a huge smile on his face.  He was stimming with his left hand which looks very much like waving.  Hello fellow walkers and riders.  :)

I had a big plan for all the errands we were going to, all running through my head as we rode.
I was praying that Britton was up for it.  That we wouldn't go anywhere he couldn't handle.  That no where would be super crowded, and that I'd be able to handle whatever happened.  As I was riding along the bayou, I noticed this big white bird.  Now, I don't really know what it is, but I always see it and wonder.  It's a REALLY BIG bird.  I think it's some kind of bird that you normally see at the beach.  As that thought crossed my mind, I begin to hear a still small voice.

"Most these birds live at the ocean.  He'll never taste fresh fish, he'll never smell the ocean breeze, he will always eat bugs and catfish."  I thought, So why does he stay?  The answer was obvious, because he's safe, that's why.  No predators along the sewage filled bayou.

I was so stunned by the thoughts going through my head.  It took me a minute or two, but then I got the connection.  I struggle so hard with taking Britton into the public.  I never know what's going to happen, it's always like Russian Roulette.  Will he stay with me, will he run off?  Will people get angry, will they stare nonstop?  On and on the fearful questions pummel my subconscious.
But I realize, that I have a choice, just like the bird.  I can stay by the bayou... eating bugs, or I can take a huge giant leap of faith every single day, and smell the ocean breeze.  So today, we went to Costco, then to the car wash, then to the bank, and ate lunch at Willie's Icehouse.  Some people really rather not think about the disabled, they are really bothered by my "putting us out there" for them to have to see.  Others however are inspired and grateful and kind.  There will always be both kinds of people, there will always be those who Britton inspires, and those who cringe and stare.  But because I really want him to smell the ocean, to eat fresh fish, and soar on the ocean breeze.  I'll just keep praying for God to protect us from the "predators" that we will inevitably encounter.  There are so few of us willing to step out there with our disability for the world to "appraise."  I have to say that I am stunned by how rude and uneducated so many people are to the disabled.  For those of you who wonder, you shouldn't stare.  BUT... you should acknowledge.  If you are afraid to look, and you quickly look away, it can seem like  you're either disgusted or freaked out.  So, do what you do with ANY stranger.  Just look the person in the eyes, and smile.  It would okay to even say hello.  Britton has stunned me time and again, by speaking back and replyng, "Hi."  I do find that if I can convince him to wear his t-shirt that says, "Autistic Genius" that people are less fearful.  The fear of the unknown seems to be a huge part of it.  For Britton, he looks so normal, lots of people are just trying to figure out if he's "normal" or he's not?

I consider today a success.  We went, we saw lots of folks and we didn't cause anyone to run in fear.
It was a day of soaring on the currents, a day of eating only fresh fish.  I'm not always brave, some days I take him through the drive thru cause it's really busy inside and I'm not up for it.  Yep on those days we might as well eat bugs.  It can be after a difficult situation in the public, and I cower sometimes for weeks.  I'm not alone, many moms and dads have never taken their autistic children to the movies, grocery shopping or out to eat.  Some of them have spent their lives between home and school, and a school bus.  That's it.  More and more schools are refusing to take children out as well.  Insurance premiums are just too high.  So, if you've never seen someone with autism out shopping, don't be surprised.  Even though they are 1 in 54, they are pretty much sitting beside a sewage filled bayou, eating bugs and bottom feeders. (Mostly hiding in their homes, or schools)  It's a scary world out there.  I'll never see that bird again and think or feel the same way.  I'll hope he eventually disappears and I'll believe he finally woke up one day and decided that really living is worth far more than being safe.  What do you think?  Should we play it safe, just eat the mosquitoes and flies, safely scoop up the catfish out of the sewage filled water?  Or should we risk it all, by getting on a plane once a year and flying across an ocean to paradise?  Should we gamble that people will be kind, and even if autism has a melt down, it will be worth the risk?  You've seen my pictures, you know I'm a gambler at heart.  So here's to eating fresh fish, chasing the sun across the water, and here's to that white bird.  May he take flight.

Maybe in the next life it won't matter so much.  But here, and now... it's hard to imagine that it won't.  I don't seem to be able to help myself wondering why God intervenes sometimes, and seems to turn a deaf ear other times.  My soul feels bruised, mangled, worn.  I cry out day after day and wonder what I have done for God to ignore me.  So many families get reprieve.  At least enough healing to get language, have some hope, see a possible future.  Others, like us, just aren't as deserving, or needy, or perhaps God loves them more?  I know, I shouldn't go there, but the truth is, we all do.  When things get super hard, I begin to wonder why God ignores me.  I wonder what did I do this time.  He obviously owes me nothing, but my son could not have committed any sins, since this disease began to ravage him before he was even two.  I know it's not rational, I know it does not fit with God's word... it is just what I FEEL.  When I get this tired, it's hard to deal with what I know versus what I feel.  What I feel just comes boiling to the surface like some nasty oil well about to erupt.  It's not good.  I decided to be extremely transparent.  My hope is that if you are battling something equally difficult, that you will feel comforted to know you are not alone in your depravity.  No, no, not depravity.  Let's go with despair.  I had a friend tell me that you have to be prepared for the consequences of real honesty.  I have no idea if I'm prepared for it, seems insignificant in this battle.  I personally think honesty saves me.   If tragedy really exposes who we are, I must tell you I am the most depraved of all men.  I cry incessantly.  I beg God, I ask God, and eventually I blame God for not caring enough.  Again, all NOT GOOD!
There is a tiny light of good news in all this... it's that God listens and tolerates my despair.  He always leads me back to His word and attempts to encourage me.  I just have days where I do not feel it will be possible for me to hang on any longer.  How dare I blame God, for what I know God clearly opposes? It's a good question.  God definitely operates on a different timetable than impatient human beings expect.  From Abraham to Moses, David and so many others.  I learn that God moves in ways I would neither predict nor desire.  A record of God's faithfulness in the past combines with hope in a better future for one end:  TO EQUIP ME FOR TODAY!  Right now is my most important moment in this journey, because today is the only time when I have any power.

I watch my very brave husband battle this autism monster.  He seriously does it without many tears, with his face set like stone.  He is determined to eradicate this monster from his only son.  To somehow liberate his family from this living death of a life.  He just marches on, without complaint, with the most incredible resolve.  I've never known a better man.  He is God's man.  I know that God must be so proud of him, I am another story.  Yes I am that woman who feels sorry for Job's wife.  LOL  I recently went back to research to be sure he didn't ditch her for a new wife when God restored everything.  Sure enough, there she was.  Enjoying the fruits of her husband's faith.  That gives me some hope. (feel free to laugh)

This latest twist of autism fate I didn't see coming.  I knew something was wrong back in early Spring, but we battled away, the same way we always had.  I didn't know I was NOT HELPING.  Now, that he has been ravaged by this strep virus/bacteria that I didn't even know was there.  Just one more battle his body is attempting to fight.  I'm just praying his body is up for another assault.  He isn't able to sleep much because of it.  They say the strep inflams the brain and causes all kinds of awful things.  He hallucinates, he stares at things for long periods of time.  He cries out.  He has been attempting to reach over and close my eyes for about a month.  (It feels like he might poke my eyes out) So as long as I wear sunglasses, (even in the house) he's okay with it.  If I take them off, he will come and put them back on me, or incessantly try to put his hands over my eyelids.  I know, who knew autism could get any weirder?

When he finally crashed in exhaustion somewhere around 12:30am, I was looking at him, praying for him.  Thinking, if you had cancer, if you had some awful disease that people understood they would pray for you more.  They would feel concern for you and your family.  But, no, because this disease is created by a greedy pharmaceutical industry, with the backing of the whole government.  They spend millions of dollars on their propaganda, saying that autism is caused by any and everything.  (e.g. refrigerator moms, Genetics, what the mom ate during pregnancy, what the mom DID during pregnancy.  What the mom was exposed to during pregnancy.  Starting to see a pattern?)  A researcher that was recently interviewed said that "autism has been proven to be genetic."  I threw my rubbber glove at the television.  (THAT is a bald face lie)  It has been speculated.  But if you ever thought it through for even a second you'd realize that 1 in 54 children can't be a genetic problem.  We've never had a GENETIC pandemic.  There is no such thing.  They use the genetic thing because they want you to blame the parents.  THEN, YOU FEEL SAFE!  Get it?  That way you don't worry about those pesky autism rumors and vaccines.  You just slap your baby on the vaccine conveyor belt and not let those silly autism parents worry you.  We all know it's their faults and they're just looking for someone to blame.  Yeah, I wish.

I write a lot.  Journals, blogs, just all kinds of things.  I write poetry.  Yeah, I know hard to believe.  But I often find things I've written, in books, cries of lament penciled in my bible, in spirals, just laying around.  I recently found this one.  I was stunned by how I've felt the same for years and years.  As each new battle rages... it's really the same war isn't it?  But as I think of the battle that raged when I wrote this, I remember that I got through that battle, and what I felt and believed was changed by it.  Remembering my relationship with God takes effort and intention.  I cannot pull out a video and watch the history and growth of my relationship with God, there are no photo albums of living in faith.  Only God sees my heart, and my battle scars.  This is our relationship that is forever under assault.  By the same token, the "monster" is His enemy too.  After all, "if God be for us, who can be against us?"  Let's slay this monster and burn the debris.

My precious child is held a captive..

Imprisoned by a ravaging disease

The torture is constant and endless

And only God can set my boy free.

So I pick up my sword each morning,

I hold it up all through the night.

This monster rips and destroys

I must battle him, and relentlessly fight.

Somedays I sense the enemy weaken,

Somedays he drops back in retreat.

But most days he laughs at my efforts,

Knocking me back in defeat.

Is there no place to end this fighting?

The vigil I keep is ever long.

The weapons I wield are so heavy.

But deep in my heart there is a song--

It’s true it’s my child this time,

As you watch from your life of ease.

But the monster is not too selective.

It’s on your child he’s wanting to feed.

So I strap on my helmet each morning.

I lift my shield every single day.

I pray that someone will hear me

That God will show me the way.  

When the battle overwhelms and destroys

On days that I can’t hear the song.

I’m pleading for you to wake up.

To open your eyes and believe what’s wrong.,

It’s an army of families marching,

I think I heard the sound of their cries.

Forming a wall against the monster,

A fortress against the world’s lies.

Listen I’m sure you’ll hear it.

It’s a shout, a call to fight.

No longer will we suffer in silence.

No longer will we hide from the light.

The monster has taken some serious blows,

His wounds are swelling and sore.

His companions try desperately to shift your gaze.

But the pain is just too hard to ignore.

They pretend he isn’t really a monster.

They pretend they’ve taken his claws.

But they’ve lied as they’ve stolen our children.

Their greed is directing their cause.

Some children have crawled to the surface.

Some children are now running free.

But my child still battles the darkness.

Silenced by this ravaging disease.

So mothers don’t give up your vigil.

Don’t lower your shields to rest.

The monster is licking his wounds just now,

But he’s seeking your family next.

Oh God of all poisoned children!

Please stand and fight beside me now.

The monster continues to ravage and chew,

We must stop him, but we need to know how.

Hold me tight as I’m keeping watch,

Keep me awake when the battle grows long.

Lift my arms when they fall in weakness,

But most important let me hear your song.

Help me sing about hope and about longing.

Help me believe that he can some day be free.

Help me love in this black, evil battle.

Help me forgive those who aren’t willing to see.

I need to sing out loud and forever!

I need to be heard over the lying throng!

Please help me sing loud so my child can hear...

Please empower me as I sing your song.

Father of light and Father of kindness.

My hope and strength in this dark, foul place.

My eyes have have adjusted to the darkness,

My weary limbs seem to keep up the pace.

A crack of light has pierced this prison.

Showing truth everywhere it shines.

As the crack grows larger and larger

I know that victory will someday be mine.

One more time I lift up my shield,

One more time I look in Britton’s face.

The hope and trust that shines in his eyes.

Is enough, to make me pick up the pace.

Lift your shield we have monsters to slay!

Somedays you sure don't see it coming.  I had struggled through the morning, which is what usually happens.  Britton wakes up, runs down the stairs, and wakes us all up before the alarm goes off.  Man I'm tired.  It has been over a year now that he hasn't slept past 5, usually it's more like 4:30am.  Yes that includes Saturday and Sunday, autism doesn't care what day it is.

But today as I struggled, we did our usual routine.  Once out the door, we head to do some Mom and Britton time.  Sometimes we grocery shop, sometimes we walk at the park.  We spend about an hour and half together before I head to the school.  Today we stopped by Walgreens, because it is one of his favorite bathrooms.  Yep, I said bathrooms.  Britton is a bathroom connoisseur if there is such a thing.  He prefers them clean, and secluded.  That way he has it all to himself, and can use each stall, and each urinal separately with no interference.  It makes him happy, and calm.  Walgreens is always kind to us, and I always buy things.  He picks out snacks, and he opens the drink refridge repeatedly begging for a coke.  He rarely gets coke, and now that I know he can, he only gets a coke if he SAYS COKE!  Which is rare, as a matter of fact until today he had only said it once.

We stood at the snack/refridgerator aisle and he went back and forth.  This feels like and hour, but it takes about 15-20 minutes.  I rarely notice if anyone is watching, only if we get in their way.  Today there didn't seem to anyone in the store but us.  It was super early.  Britton blurted out "COKE!"  I was so stunned that I stopped what I was doing and hugged him and tears ran down my face and of course he did get a coke.  We took the coke, and all the things I buy, (e.g. light bulbs, dish soap, toilet bowl tablets) and went to check out.

The lady at the counter says to me, "You don't know how I look forward to when you come to the store."  I was busy watching Britton organize the gum and the candy at the check out.  He doesn't buy them, but he makes sure they are all in the right slots and neatly stacked.  I looked up and said, "Oh goodness, why is that?"  She says....

"When you come in here, I am always reminded of God's love for me."  Of course I was taken aback.  I said, "that's awesome, how do we do that?"  She said, "It's because you are so patient and kind.  Your love for your son radiates from you, to him.  No matter how difficult he is, you patiently redirect him, and help him do better.  So I know, that if there is a human on earth that can do that, that my heavenly Father will always do that for me.  He always whispers to me about you."

Well now, if that isn't some kind of morning I don't know what is.  It's only Wednesday and it's been a very hard week.  Britton is struggling with some physical ailment of which I can't seem to put a finger on.  (No surprise there)  So he is stimming and wild, and agitated.    My sons caregiver of nine years will be leaving us in less than 6 months.  I have no idea how to replace her.  The pressure, because I have to work more now...we have so many changes going on at work.  With Obamacare crashing down, we have so many overwhelming changes that don't even seem possible to make.  But you see, our clinic is not OUR clinic, it belongs to God.  Trying hard to remember that, and rest in my faith. Then there's all the employee changes as my office manager, (and daughter) heads off to Law School.  The grief I feel is overwhelming, because I know I will never see her.  (I know this because my oldest went to Medical School, and it's been ten long years and she is just NOW heading home, next month.  TEN YEARS!)  Not one birthday, very few holidays, every vacation, she missed it all... Now the 2nd daughter will miss it all for years to come.  sighhhh    God keeps reminding me, THERE ARE NO COINCIDENCES!  NONE, ZERO!  There's so much more, but you'd stop reading if I told it all to you.  :)

So here I am, standing in the Walgreens, crying like a baby.  Britton is stimming and jumping, and laughing.  The lady is saying, "I didn't mean to upset you.  I wanted you to know you are a blessing."
It's hard to believe that the struggle, the difficulties, the impossibilities of my life, matter.  You too?
Well I guess we never know what God has in mind.  We never know, who God is pointing us out to.
My mind shifts to Job, and I'm certain that he never had a clue that God had bragged about him.  Given the choice, none of us choose difficult situations.  But at that moment, the blessing that I felt come over me was worth it, at least for a moment.  I felt so loved, so bragged about... by God.  I can't imagine it.

I drove Britton to school, and he reached over and wiped a tear from my face and kissed me.  Then he grabbed his backpack and went hopping into school.  My God is an awesome God and He knows when we can't go any further without at least a word of encouragement.  This life, this horribly difficult life that we battle through, does matter.  If to no one else, it matters to God.  He watches, He brags about you and me.  He is apparently, at moments even proud of His Warrior families. So pick up your sword again, and "run quickly to the battle line" my friend.  God is watching, and he might just point you out to someone else.

Hiking the world with Autism

I know it's been a while since I blogged.  Not really but since I posted one.  Some are not fit for anyone's ears but the good Lord.  Besides that, I've been crazy busy with Britton being home since May.  Also, we got to go to Kauai, again.  I know what you're thinking, "those lucky dogs, they always get to go!"  Ahhhh the peaceful, wonderful, perfect weather, it's totally paradise. We are lucky, or rather blessed.  It's so amazing... we feel do feel lucky, grateful, amazed, blessed... every time we get to go.  God has given us this gift.  I am beyond grateful.  He knows this about me.  :)

The thing is even in paradise, autism is autism.  It's stimmy, and touchy, and refuses to sleep, and always demands it's own way, refuses to swim in the ocean for the entire vacation.  Demands to go to the bathroom in every place we go.  There's no relaxing on a beach, reading a book, walking down the beach hand in hand looking at the sunset.  No doing the kind of things that we and of course you would do on a vacation.  Nope, autism's needs, do not cease to drive my son, and subsequently us, completely batty no matter where we are.
We work all year, we save and save for that vacation.  We build it up in our minds and then... autism has its own plans for us.  But we have the good moments, the huge smiles, the words he is able to speak while we are there, his comprehension increases to almost a normal level it seems.  So, we take Britton to Kauai, for those understandable reasons, sadly autism has to come too.

I want to tell you about one of the hikes we did while we were there.  It was our last, long hike along the ridge line of the Napali Coast.  One of the most beautiful places I've ever seen.  It was an amazing, hike, in Kauai's perfect weather that feels like constant air conditioning.  Briton was enjoying this day, and I kept trying to get a picture of him, skipping, and smiling, and enjoying the hike.  He would skip, and hop along, (while we panted and climbed) he would bend every fifty feet or so,  and touch his knee to a rock or a tree.  I have no idea why, he just enjoyed it so much.  Super fun to watch him enjoy himself.  It is a rare thing on a daily basis.  Mainly because, Autism not only drives us to our wits end, it is a cruel master to Britton as well.  Taunting and tormenting him, all while he is trying to adapt to this world that rather ignores his existence.  sighhhhhhhhh  No vacation from autism for him either.  :(

As we hiked I began to think about how similar a difficult hike is to navigating a life with autism.  About how the trail is "unmaintained" and how the reality is, (for our family, and hundreds of others Britton's age) no one has gone down this trail before us.  Every time I came to a neon orange flag that was a reminder that "you're still on the trail"... I was thinking... oh how I wish for trail markers on this "hike" through life, but there are no markers, no one has been here to mark it.
That means I'm to tie the streamers and leave a path for the next family.  God and I talk a lot on these walks, I think and think, (like Wiennie the Pooh) and God and I "reason together."
Watching Britton, hike, and hop, and skip happily up the trail, I decided that I'd not done a horrific job with him.  I mean, how do I know if I've done really good or really bad?  I spend far too much time condemning myself for all I haven't been able to accomplish.  (Masters Degree in Self Condemnation)
I spend hours regretting when I've gotten angry with someone who definitely acted STUPID.  Somedays I default into the mentality of "pawns and puppets, and realize that I'm trying to decide whose victim I'm going to be."  I start telling myself how powerless I am, that God is going to do, what God is going to do...and hey being God's victim is better than being anyone elses, right?  But by the time I think it all the way through and try to imagine God being okay with me being even His victim, I realize that God always replaces victim, with victory and I look up and realize I've made it to the summit.  How fitting.

This past week we had a "fun" incident in the Hobby Lobby.  Britton's obession with bathrooms may be the end of me.  It seems he MUST go in EVERY bathroom, in every place we go... at least once.  TWICE is my absolute limit.  We had come from lunch and although I NEVER go when we are out together, I had no choice.  I told him if he came out and I was not there, I was in the Ladies Restroom, and would be right out.  He went in the mens.  I hurried into the Women's, and barely got in position, when WHAM he comes running in and scares an elderly woman as he whirls by to the last stall.  OH NO!!!  I hurry, and go out and get him to wash his hands and out we go.  The woman, has gone and gotten the manager.  They accost me as we exit, and the manager is very hateful.  He says that "If I can't control Britton, he should not be in his store."  Fabulous.  It makes me really sad, and then...really mad, so...I say, "well you have no "Handicap" restroom, where I can take him by myself?  I am sorry this woman was frightened.  BUT... he did not touch her, he did not hurt anyone, he only went in the wrong restroom."  I just kept standing there thinking,  "How many of us are faking that we aren't dying inside?"  I kept looking at the woman wondering what feelings prompted her to do this deed?  So many times I've wished I was invisible.  But do I really want to be swallowed alive and dropped down a cold, black hole and no one notice?"  Yep sometimes it's not a pretty place in my head.
 
So like hiking a really long, big incline, out we went with our tails tucked between our legs, heads down in yet more shame.  (Remember that cloak from last blog? )  Such is life with autism.  Talk about a square peg in a round hole... autism is a bizaare shaped peg that fits NO HOLES!  Where do we fit Britton?  I wish I knew.  I wish I was a better guide on this trail.  I don't know the way, and I don't know what's ahead.  I wish we weren't in complete darkness.  But we have to keep hiking cause we can't stop here, keep putting one foot in front of the other.  It's all I know to do.  I close my eyes, put my hands in Gods and I take another step, praying I'm not stepping off a cliff, believing that I'm on the right trail.  So far, only a few near death experiences. :)  It's at these moments I wonder if I should leave the outrageous faith to the Christians who haven't been beaten up by life yet.  I'm pretty sure that's not how this whole thing works though.

Autism is a condition NO ONE wants to deal with, heck no one really wants to even know it exists.  From it's extremely unpopular, controversial cause, to it's nearly impossible ability to manage, it really gets almost no sympathy, or understanding from the masses.  If you're thinking, "wow she's in a mood, throwing herself a pity party."  Maybe I am.  I'm just so worn down.  Let's be honest, I hate autism far more than you can imagine.  I hate watching autism ravish my son's brain and destroy his intestines.  I hate that the future that God planned for him is stolen.  I hate that no one on this planet gives one rats ass for all the suffering that the PHARM whores have caused so many families, and then allowed our courts to give them immunity for what they have done.  I hate that the "respectable mothers" just walk like sheep to the slaughter with their tiny bundles of joy in tow straight to the Pharm Slaughter.  All the while, they look at me with condescending eyes, not realizing they are one vaccine from crossing over to this relentless life.   Yep, trust me, I hate autism far more than you do.  Hate really isn't a strong enough word.  I'll go with loath.
Still with me?  Impressive.  Well then, I'd love to tell you about another hike, our favorite hike, the one we look forward to every trip back to Kauai.  We hike a trail called, Kalalau.  It's considered a "difficult hike" that requires proper foot wear, enough water, and that you should be in good physical condition.  Let's just say the first few times we did this hike, we were clueless as to what proper gear really was.  It's a hike around a volcano.  The first time we did it, we had no idea that you should not get caught up on the mountain after sundown.  Take the pitch black of night and compound that with the pitch black of volcanic sand, and you seriously can't see your hand in front of your face.  That's not a good idea, when staying on the trail is a difference between life and a 2000 foot plunge into a crater.
Yep, just like autism.  We walk that black trail, in the dark, wishing that someone, anyone could shed some light on our climb....  The first time we hiked it, we took our good sweet time, having no idea we would end up in pitch black at 5pm.  It's hard to navigate in the light, with the best hiking shoes.
It's an eleven mile hike with lots of climbing up for miles, only to have you lose all that elevation the next mile. The views a long the way are beyond spectacular.  Something that you almost have to see to believe.

Much like autism, you work and work and you think you're about to make a huge break thru, you get a behavior under control.  Maybe you even get a word or two...and bam, some physical illness surfaces, and your son's behaviors leave you on the floor crying again.  What to do next?  Keep on climbing?  Yep that's all there is to do.  Get back up and take the next few miles, hoping to gain back all the elevation you just lost.
This particular hike, is one of our favorites because after four miles, you end up at a beach.  So all the elevation, and then you descend into a valley that has a beach that is only accessible on foot, or by boat.  We walk down the large black lava rock, to the white sand beach.  The waves roll in and take our breath away.  It's hard to ever leave.  This year, we didn't continue the hike.  Britton sat down, right at the ocean edge, and watched the ocean for over two hours.  He had the biggest smile on his face.  Two hours, he doesn't do anything voluntarily for two hours.  This was one of those magic moments.  A moment when all our hopes for his future come soaring up and fill our hearts with hope and joy.  We allow ourselves for those few seconds to remember peace and happiness.  To remember that there is a "Hope" for our son's future too.  That the God who makes oceans and sky like these, can deal with autism with but a single bat of his eye.  ahhhh peace for a moment.

People crack me up about our trips to Kauai.  They will insinuate how rich we must be.  It's hard not to laugh, really hard.  We aren't even sort of rich.  We are desperate.  We just know, that taking him there helps him.  He loves to go.  He loves to hike.  He loves to sit and watch the waves.  Always, every time we go, we get some language.  Sadly, we look forward to those few words we get, every single year.  So, we are willing to sacrifice for it.  We sacrifice past good sense.  We go and it costs us more than can be imagined.  Picture yourself on an 8 hour flight with a young man with autism.  Now picture yourself, the caregiver of that young man.  YOU are responsible for his behaviors.  Scary isn't it?  If I've said it once, well you know the cliche', but autism is always a wild card at best.  You never know what might happen.  Worse than that, you never know how other people are going to respond to what he does.  Getting him there, has never been easy. This year however,  is the first time he had a meltdown on a plane.  It wasn't a wild, crazy, "Oh MY GOD,  this is nuts meltdown," but it involved growling, biting, and demanding for something we couldn't give him at that moment.  (bathroom during turbulence)  I think I should tell you that only one person stared nonstop.  Almost everyone, was kind, and caring.  The flight attendant tried everything she knew to help us.  God Bless you Alaska Airlines.  I will fly you every chance I get.  They were amazing to us.  It was a long flight, and I could've kissed the ground when it was over.  But that is a small price to pay to have him free of autism for a few hours.  Free to watch the waves with a big smile on his face.  Free from his damaged body for a brief moment.  I'm just willing to do whatever I can, to give that to him. 

People often ask us why we don't move there.  Goodness, if I could figure out a way to make a living, I'd leave skid marks in the drive way.   I may figure it out someday, and if I do, Aloha!

  

What do you see?

I know it's true... I'm socially impaired.  Oh no, don't go thinking I was born this way,  I wasn't.  It came from the twists and turns, and molding of life with Autism.  I use to be able to chit chat about, ohhhh the latest fashion, or someone's new hair style.  But no more.  I decided after attending a small party thrown in my brother's back yard, that I probably should not attend without a list I hand to anyone who would like to attempt small talk, they should be warned.  Like mutes I have encountered, who hand me a note about the item he is selling for $5 in a restaurant.  I'd hand out a list of possible topics of conversation.
This list would say something like this... I can engage in adult conversation, outside of using the PECS system, and/or the Proloquo on the IPAD.  However, my ability to stay on topic will be limited to the following subjects.  First and foremost, #1. Autism.  We can discuss it's many causes, treatments, controversies.  As long as Autism is the main topic, I'm good with that.  #2. Biomedical Interventions for Autism.  I realize that really falls into #1, but trust me, I can talk for hours on end on more than maybe a thousands choices for treatments.  So it warrants it's own number.  #3 Nutrition for autism, and those with various seemingly unrelated conditions, (e.g. ADD, ADHD, OCD, etc etc)  See, I'm branching out, not totally autism related?  #4.  Politics, and you guessed it, as related to Special Needs and/or Disabilities.  #5.Genetically modified foods and how they affect the physiology of most humans, specifically those who have been vaccinated and still have live measles living in their guts,  I know you guessed, those with autism.  #6.  Hormone Balancing, not specifically related to those with Autism, more for those caring for those with Autism, whose systems have burned away all their hormones from lack of sleep and proper nutrition for many year.  (But possibly for those with Autism if they are old enough to need that type of intervention.)  #7  I'm particularly proud that I can add this one, My Spiritual Journey because of.... (drum roll)  AUTISM!!  #8. Fitness - It only gets a nod because I had a whole life before Autism, although I hardly remember it.  I also hate mentioning that I know much about it, as my life with autism has certainly not been conducive to doing the things that keep ones body fit.  Something I gave up kicking and screaming, but eventually yielded and raised the white flag. Let's just say I'm NOT willing to discuss my body fat %.   #9.  Chiropractic - because I work at my husband's clinic about 20 hours a week so that I may still be capable of conversation and function apart from autism...(my eye twitched for almost a decade before I got out a little) and last but not least #10  Kauai - because my son LOVES this island beyond anything I've ever seen, and almost without fail, he talks a little when we take him there.  So although I can discuss at GREAT DEAL about Kauai, I have to say, I might have known very little of it, if Autism hadn't taken me there, again and again each year, praying for one word of communication from my son... He is imprisoned inside a body that just refuses to function well enough neurologically, to allow words to come out.  sighhhhh  And as you can see, I discuss Kauai as it relates to Autism.  I don't know if that will ever change.  I don't know if it's suppose to change.  Tragedy changes us all.  It carries us down a different channel that we never would have dared venture into if our life had not been changed so permanently.  So suddenly.
It's funny, today I sat in church and listened to a sermon about "Spiritual Eyes."  I couldn't help but think of how often I have compared having a child with autism, with waking up with a new pair of eyes.  Everything has changed!  It's not a choice that you see things you never saw before, you just do.  There is no changing what you see and how you see it.  Your "new eyes" see so many things you were blind to before.  How the disabled are "seen."  What their world is like.  How doctors view your opinion of things because so many of them assume you blame the vaccines.  Things seriously are a different color, shade, huge.  Who am I kidding, they are totally different.    Today my pastor talked of "spiritual eyes."  Eyes that see what God sees, what is real.  My new eyes are a lot like that.  they see things that God sees, or maybe has decided to show me.  There are those who like me, are given new eyes, following a tragedy, and then I have met others, who were just born with those eyes.  Truly amazing gift, or curse, depending on which eyes your currently looking through.  (I have also met others who experience tragedy and refuse the new eyes, the saddest condition of all.)  

As our pastor spoke of the story of Elisha saying, "there are more with us than are with them..."  I wondered when Elisha received his Spiritual eyes?  Was he born with them, or like me, did some tragedy happen, and he wake up seeing things he had never seen before?  Are mine "Autism eyes", or "Disability Eyes," or are they just Spiritual Eyes that need another tragedy to see yet even more?  I have journeyed through this life processing, dealing with, trying to understand so much of my experiences with autism.  Certainly not without complaint, but with unfailing perseverance that is not likely to change.  I have learned to love, to truly appreciate the gifts of a "normal" child's learning.  The kindness of strangers, who are just kind because they choose to be.  What angels they are, so important to those of us struggling each day.  The tolerance of extended family members, who just love us, although so very difficult at times. They don't understand really, but they love, and that's all we need.  
I see with these eyes, that love really MUST cover a multitude of imperfections.  I also know that unless one of those family members inherits these eyes before I leave this earth, that there will be no one left to SEE my son for who he really is.  A whole person, made in God's image, loved enough by my Savior to die just for him.  New eyes.  I never knew to pray for them before, I never truly SAW before.  I have not appreciated my new eyes much.  Not until recently.  I see so many things that I'd rather not see.  But, I can't UNSEE them.  Like Elisha, who knew what he saw, because w hat he saw, was truth.  I know what I see in this world of autism.  Others may not see it, may not wish to see it.  But it won't change the fact that my son is Vaccine damaged.  Go ahead and pretend it isn't true.  It's okay, it really is, I understand why you do it.  It's seems so much safer in the world with the old eyes.  I don't judge you for what you see, or rather what you can't see.  I use to have the same eyes.  It's hard not to feel old, worn, maybe even a tiny bit wiser.  I have finally learned to embrace my new eyes.  These eyes help me see my aging parents, and really SEE their suffering and realize that I am next.  I see other disabilities, children with cerebral palsy, who are so imprisoned inside their own bodies with not much more communication skills than my own son.  I see my niece with diabetes since she was 8 months old, saddled with a pump and a slave to the insulin that she must have in varying doses to keep her alive.  I see her mother, who also has new eyes, toiling away at a labor of love because she will give her child the best life possible at the cost of well, everything.
I don't know that anyone would volunteer for new eyes.  I recently read this quote...
"The real voyage of discovery consists not in seeking new landscapes, but in having new eyes."  
I decided that it may well be true, and yet "new landscapes" has a whole different meaning when looking with the new eyes.  Never did I know that my new landscape would involve showering, dressing, hair brushing, shaving, toe nail clipping and even occasionally cleaning the backside of an adult son.  Not something that my old eyes could've ever seen myself doing.  Not many of us could... but my new eyes, well they show me that I do what is necessary to make my sons life doable, livable, tolerable, and pretty much just possible.  
The real question is, what do my sons eyes see?  Does he see a world that resents his very presence?  Does he realize that so many see him as nothing more than a "leach on society".  (quoted from a member of the PTO when he was 6)  Does he know how many people just ignore his existence because they choose not to see him?  What does society look like to him?  
More importantly to me, what do I look like?  A mother who tries to stay awake all the nights that he can't sleep, but is now over 50 and it isn't possible anymore?  A small woman who can't possibly control him in public, and yet, I put on my game face and pretend.  (Sometimes he laughs at me.) Does he see the hours and hours I spend researching, preparing, planning, trying to find new hope from some doctor across the country who just might have finally unearthed that missing piece of the puzzle that will open the door to his mind?  Does he see a woman who takes constant verbal abuse from a school district who has attempted to do nothing more than groom him for a state school existence? Yes they pretend otherwise, but we both know the truth.  Please know that that's not his teachers, his aides, the ones that SEE him, the real him.  They see him FIRST, autism second. (thanks for that Michelle)
It seems I've spent my life trying to keep him from seeing what the world in general really sees when they look at him. 
The ultimate question is, what does God see?  What do you see?

A Cloak of Shame

Have you ever worn a cloak of shame?  I guess I didn't realize I did until recently.  I've always said that I've been hiding under my giant "autism rock."  But the real truth is, I've been wearing a cloak, and when anyone got too close, I'd yell in a loud voice, "UNCLEAN!"
Hard to believe after 22 years I'm just figuring this out.  Just a slow learner I suppose.  I had a pretty rough afternoon with Britton this week.  Oh not because he did anything unusual, it was just that a group of young girls wouldn't stop pointing and whispering, etc.  We had gone to the movies and he was super excited.  Jumping and flapping, and running back and forth.  Sometimes when he's super happy, and there is hardly anyone around, I just let him BE WHO HE IS.  Perhaps I shouldn't, but we all need moments of freedom.  He has so few.  Well these teenage girls were just excited to have someone else to gossip about.  Someone else to be the target of their pointless teenage drama.  BUT.. they followed us into the theater, and sat on the same row as us.  (The theater had TWO people in it besides us!)  I got up and asked Britton to move up a few rows not to bother them, and so they promptly got up and followed us.  NOT okay with this momma bear.  Britton is autistic, he is NOT STUPID.  He realized what they were up to, and so he tried to sit lower in the chair.  He eventually took off his sweat shirt and covered his head.  That's right, HE COVERED HIS HEAD!  This just gave these young ladies more fuel, and they laughed and pointed.  I was done.  Yep, here goes...
I slid down the aisle of chairs to them, and said,

"The truth is, YOU ALL should put your jackets over your heads!  The Shame you should feel for what you have done today is so sad, and so disappointing!  The hard part is, to believe that your parents haven't taught you better!  To believe that somehow abusing someone who cannot defend himself makes you laugh, and makes you happy.  Something is seriously wrong inside all your hearts!  Tonight, Britton and I will pray for you.  We both hope that Jesus has a long talk with each of you.  He could've been your brother, your best friends brother!  Then would you still make fun?"
Two of them jokingly put their sweatshirts over their heads and continued to giggle.  I hope the popcorn gave them all horrible belly aches.  :(

Yeah, I know... I'm sure it only made them laugh harder as we left the theater.  Britton wouldn't take his sweat shirt off his head all the way home.  ALL THE WAY HOME!  He went to his room and cried for about an hour.  I'm going to say for the millionth time, If only he was REALLY retarded we'd be so much better off!!!
 I opened my bible for some comfort only to read the story of the ten lepers.  "UNCLEAN" they had to yell, as they were always "outside the city."  They weren't allowed in.  They were required to wear a shawl over their heads and even wrap it around the lower half of their faces.  Cloaks of shame were required.  As I thought about their forced isolation, I thought about my life. It's exactly what I have done for so many years.  When you try to be part of our lives, I pick up my cloak and push you away.  "UNCLEAN" I scream, to keep you back, to keep you away, to keep you at a "safe distance."  But the real truth is... I'm protecting myself from your judgment, from your painful words.  If I keep you far enough away, you will never be able to really judge me.  When strangers judge, it's no big deal.  I chalk it up to ignorance and move on.  But when someone I care about, or wish was my friend judges, that requires the cloak.  I read in Leviticus 13:45 "The person with such an infectious disease must wear torn clothes, let his hair be unkempt, cover the lower part of his face and cry out, "Unclean, unclean!" I suppose I just scream, "Autism, stay back!"  As the years have past, I have become far more comfortable with everyone else who is also "Unclean" or at least have children with Autism.  Our tragic plight gives us far more in common than any of our other differences.  Like lepers in a colony it's the only place we feel truly safe.  I have had the privilege to be friends with many parents who deal with autism everyday, who never once felt unclean because of it.  God bless you my friends, you have taught me much!

When we judge each others disabilities, (even levels of disabilities) or perhaps each others sins, aren't we just like lepers counting spots?  I love that Jesus told them that they would be "made clean."  I know it's sad, and it's just how I feel, but it's also how many of us feel.  We feel unclean, unacceptable, unreachable, untouchable, unfixable.  As I talked to friends about the situation in the theater, about what the "proper response" should've been.  Each and everyone of them said to me, "There have been times in my life that I felt so unclean.  Times I would've given anything to be able to put my sweatshirt over my head, and yell, so everyone would go away and stop judging!"  Wow, so it's not just autism, it's life.  It's whatever your sin, disability, fear, worry is.  It's the thing that makes you want to put a sweat shirt over your head!
The good news is, none of us have to count our spots.  There's this amazing children's book called, "You Are Special" by Max Lucado.  It's one of Britton's favorites.
It's the story of these small wooden people who were made by Eli, the woodcarver.  All of the Wemmicks give each other stars for being beautiful, or smart, or talented. When you're covered with stars you parade around so everyone can admire you.  But, they also gave each other grey dots for being well, ugly, dumb, crippled, etc.  Then you cower in shame, and hide.  The story is of one small Wemmick, Punchinello, who is covered in grey spots.  He eventually meets a girl who has neither spots nor dots.  None of them stick to her.  She sends Punchinello to the Wood Carver, (their creator) for answers.  The woodcarver says, "Who are they to give stars or dots?  They are Wemmicks just like you.  What they think doesn't matter Punchinello.  All that matters is what I think.  And I think you are pretty special."

So back to the story of the ten lepers.  Remember how there was one leper who was running to the priest, and realized he was healed? He immediately turned around and ran back.  He dropped to Jesus feet and thanked him over and over again.  Jesus says, "Were not 10 cleansed?  Didn't any return to give glory to God except this foreigner?"  Where were the other nine?
The thing that keeps going over and over in my mind is... I wonder....if this leper, the only thankful one,  was HE the leper with the most spots?
After meeting Jesus, no dots, no stars should ever stick again... I don't think I'll put anymore sweatshirts over my head.  :)

Autism Awareness Month?

So here it comes ..... Autism Awareness Month.  One month encouraging all Americans to pause a moment and think about Autism. What is Autism like, or maybe even what would autism be like in their own families?  I don't know that people can really go there... But it's awareness month, and it might be something to consider.  What if YOU, or your child woke up tomorrow, and one of you were struck with autism?  What if? 

If you look at Britton at 5 months old.  Bright eyed, normal, happy child.  THEN,  If you look at the next photo at 11 months old, you see a confused, in pain, very frightened child.  A child
who has been injected with mercury.  A child whose immune system could not process the toxins.  I show you these pictures, so that you too can realize... he was NOT born with autism.  By the time you see the bottom picture he had quickly regressed to less than 10 words.  My beautiful, perfect son, is almost lost here.  I seriously hate that picture.  

I remember about 20 years ago, sitting in a medical library, trying to find just one case similar to what had happened to our son.  (There was no internet back then)  I would sit Britton in my lap, and while he did all this strange hand flapping, whinning and begging me to squeeze his elbows... I would scour every published medical study that even vaguely resembled our situation.  A perfectly normal child, who has a low grade fever for several months and then after his second MMR,  BAM a grand mal seizure and never the same again.  He stopped walking for a few months, and really rather quickly lost all of the language he had developed.  500 words, just gone!  What happened to my baby?  No one knew.  It would be almost four years before I found a doctor who had ever seen autism, and actually knew the word to diagnose him.  I was told it was 1 in 100,000 in 1994.

Twenty years ago, there was no awareness of autism at all.
As much as I hate being one of the first families affected, I am beyond grateful for all we've learned.
Doctors use to make fun of families who even talked about the possibility of recovery.  Now it happens all the time.  Not easy, and not with one magic pill.... but with perseverence and unrelenting dedication of parents who do all the things that just might be the key to breaking into their child's locked and poisoned mind.  Through combinations of detoxing, supplements, diet change, and behavioral therapies, there is a light at the end of this PIT that most of us were thrown into.  A pit made of greed, lies, and disregard for your child and mine.  The Big PHARM machine owns our Congress and money and power is their goal.  Call me bitter, that's certainly how I see it.

Most the children with autism we see now, are not nearly as severe as my son,  The reason?  We really KNOW what caused autism in the first place.  (Yes I'm pointing all my fingers at vaccines.)  Knowing the "enemy" gives us the right weapons to fight.  If your child is not autistic, you are perhaps rolling your eyes over my comment of what causes autism, but with my son, he was normal and then he wasn't.  One day normal, a vaccine, the next day not normal.  It's not rocket science.  Over the months of that fated moment when I felt my pediatrician twisted my arm and demanded that I "catch Britton up"on his vaccines (inspite of his low grade fever since the last vaccine,) I'd give anything if I'd even suspected what I'm telling you now.  AWARENESS!  I'm not trying to scare you, I'm trying to help you make an educated decision.  A choice, and awareness I didn't have.
We aren't the only family that it happened to.  There are thousands of us.  One in 50 children to be exact.  Now it seems, that everyone knows someone who has a child with autism.  Don't you?

If you've met one child with autism, you've met ONE CHILD with autism.  They are not that much alike.  They all certainly have varying degrees of disability, most self stim (that's things like hand flapping, humming noises, walking on tip toes, etc) Truly the list is endless.  I can only speak for my son and say he "looks normal." Unless you watch him more than a few seconds.  A second glance, and you're quick to realize something just isn't quite right.  "Looking almost normal"  can be a benefit and a huge detriment.  When he was small I sometimes was grateful, but there have certainly been moments that people didn't understand (because remember no autism awareness?) and they would tell me how I just needed to apply a little better "discipline."  I lost it once, and screamed, "I'd beat him to death if it would make any difference."  It worked, the person RAN from me.  (I shouldn't laugh, but it's funny NOW)  It was the first time he ever bit me.  We were in Sams Club.  A place I later learned not to take him.  He would duck at the high ceilings.  I have NO IDEAwhy.  Which tells us that there are visual disturbances as well as all the other strange sensations that his senses apparently torture him with.  Sams drove him crazy.  I just stopped taking him there for years and years.   I always say if there's anything common with autism, it is certainly that they all suffer from sensory disorders.  They don't really hear the same, feel the same, see the same...They truly are dealing with things we can only begin to imagine the difficulties of enduring.  I read once of a girl who could hear so well that she heard toilets flush for miles.  Can you imagine that?  Me neither...

Is is any wonder that so many parents have a trust issue with the CDC.  It took them years and years to remove thimerasol (mercury) from vaccines.  And it's a fact that it is POISON, even they don't deny that.  It destroys brain cells, and they admit it!  (Side note, it is NOT gone out of many vaccines.  It is in the largest quantities in the flu shot.)    Other countries removed it years ago, and the CDC can say they that they "voluntarily" removed it, but I'm pretty sure it had something to do with unrelenting pressure from so many parents, screaming and threatening in front of Congress.  But just to add insult to injury Big Pharm decided to leave all the vaccines out there that still contained thimerasol til they were all used up.  Knowing it would destroy more children, KNOWING it was poison.
It's despicable.
My son was not so lucky.  No one except the pharmaceutical company that makes the vaccine knew that mercury was in them back in 1990.  Maybe you're one of those parents who insist that there's a miniscule amount of mercury in each vaccine.  Let me just give you a CDC fact.  If your child receives all their vaccines on schedule til only just the age of 6 months old, he would get a mercury dose up to 87 times higher than the maximum daily consumption of fish that is allowed.
There's no doubt that lots of kids are able to handle this kind of assault to their immune systems and their cerebral anatomy.  (They may end up ADD, ADHD, etc.  But no one is counting them.)
But... 1 in 50 ARE NOT!  My son is one in 50.  How I pray for a test of some kind that will separate out the children who are not capable of handling such a giant toxic load.  It's VERY possible to do.  I bet every parent in America would be willing to pay to have their child tested. Better yet, I bet every insurance would be willing to pay as well.  It's so much cheaper than life long medical bills, for seizures, gastrointestinal diseases and behavior therapy, to name a few.  THAT is not rocket science.  Oh how I wish that some of the big Autism Organizations would research that!  Stop spending all your donated dollars on BLUE LIGHTS and tee shirts with blue lights, and do something that really HELPS all us warriors on the front lines?!  But alas, they too seem to have been bought by the Big Pharm and now spend all their time on genetic research.  (Attempting to prove it's the parent's faults)  The thing is, with it now being 1 in 50, you tell me how it can be genetic.  I guess it is, if you're human, you can't handle neuro toxins injected into your blood stream at two months old.  I guess we humans are just flawed that way.  pshhh
                                      This is Britton now.  Still nonverbal, but at least he has
       made a truce with the fact that he will never be what he could've been...what he was meant to be
                                              By the way, he definitely knows the difference.
                                                He is the bravest person I have ever known.
                       This picture was taken on his favorite hiking trail.  He had just SAID, "Hurry Up!"
                        Randy and I, both flipped out, and he KNEW that he had spoken.
He can't/doesn't talk, but once in a blue moon, all the swelling goes down, or the wires connect,
                         or God intervenes, we don't know.  But it's always a great moment.

One of the things about autism that I'd love for people to be AWARE of... autism parents are not against vaccines.  We are against injecting poisons, neurotoxins, fetal DNA, and various other forms of poisons into our babies.  I know that vaccines have saved lives.  But I also know that they have killed thousands, and maimed millions.  Perhaps that's just the "surplus population" to some, but to me, it's my only son.  Please don't placate me with your, "If I was you, I'd feel the same."  Well you aren't me, but keep vaccinating your child and you or someone you love might be.  Think I'm just trying to scare you?  Well, I am.  Scare you away from being ONE in FIFTY!!
I'd like you to be aware that we have lost almost an entire generation of young men.  Gifted, intelligent, strong, handsome, young men.  Men that God had other plans for.  We have injected future doctors, lawyers, writers, musicians, and preachers.  We have done our nation a horrible disservice by destroying much of our future, and for what?  Greed would be the answer.  With our eyes NOW wide open, with the truth accessible with a few clicks of a computer.  The truth is out there.  If you choose not to put in the effort to even research something so serious, or you choose to bury your head  in the sand because it's easier... you have a 1 in 50 chance...You should be aware of it.